Roadmap to Seclusion and Restraint Free Mental Health
Transcription
Roadmap to Seclusion and Restraint Free Mental Health
Roadmap to Seclusion and Restraint Free Mental Health Services Scott (from Minnesota) Grade 8 Children’s Mental Health Poster Contest – 2000 Minnesota Association for Children’s Mental Health Roadmap to Seclusion and Restraint Free Mental Health Services U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Substance Abuse and Mental Health Services Administration Center for Mental Health Services www.samhsa.gov 1 Roadmap to Seclusion and Restraint Free Mental Health Services ACKNOWLEDGMENTS Numerous people contributed to the development of this training manual (see Project Steering Committee). The document was prepared by the National Association of Consumer/Survivor Mental Health Administrators for the Substance Abuse and Mental Health Services Administration (SAMHSA) under Task Order #OMB No. 0990-0115 with SAMHSA, U.S. Department of Health and Human Services (DHHS). Paolo del Vecchio and Carole Schauer served as the Government Project Officers. Disclaimer The views, opinions, and content of this publication are those of the authors and contributors and do not necessarily reflect the views, opinions, or policies of CMHS, SAMHSA, or DHHS. Public Domain Notice All material appearing in this document is in the public domain and may be reproduced without permission from SAMHSA. Citation of the source is appreciated. However, this publication may not be reproduced or distributed for a fee without the specific, written authorization of the Office of Communications, SAMHSA, DHHS. Electronic Access and Copies of Publication This publication may be accessed electronically through the following Internet World Wide Web connection: www.samhsa.gov. For additional free copies of this document, please call SAMHSA’s National Mental Health Information Center at 1-800-789-2647 or 1-866-8892647 (TDD). Recommended Citation Roadmap to Seclusion and Restraint Free Mental Health Services. DHHS Pub. No. (SMA) 05-4055. Rockville, MD: Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, 2005. Originating Office Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, 1 Choke Cherry Road, Rockville, MD 20857. DHHS Publication No. (SMA) 05-4055 2005 2 Roadmap to Seclusion and Restraint Free Mental Health Services FOREWORD In 2003, the Substance Abuse and Mental Health Services Administration (SAMHSA) set forth a bold vision to reduce and ultimately eliminate the use of seclusion and restraint in behavioral healthcare settings. These practices are detrimental to the recovery of persons with mental illnesses. Too often, the use of seclusion and restraint results in trauma, injury, and even death. We can and must do better to protect the lives and well-being of those whom we serve. SAMHSA has established seclusion and restraint as a priority area and has developed a National Action Plan to reach our vision of seclusion and restraint free mental health services. Roadmap to Seclusion and Restraint Free Mental Health Services represents a key component of this National Action Plan. It will increase the knowledge and skills of mental health service direct care staff, administrators, and consumers on alternatives to the use of seclusion and restraint. We also see this training as a tool to assist you with mental health system transformation—creating mental health services and supports that facilitate recovery and promote resiliency. Many training manuals exist, but this curriculum is unique. The President’s New Freedom Commission on Mental Health called for consumer- and family-driven approaches that support recovery. The material in this manual is recovery based and developed by consumers. It draws on the published writings and research of the leaders in the recovery movement— consumers. It was developed with the assistance of the National Association of Consumer/ Survivor Mental Health Administrators, and consumers from around the country were asked to provide insight derived from their experiences of seclusion and restraint and offer their guidance for the elimination of these practices. The expert opinion of direct care staff was also gathered and current literature on the topic was reviewed so that references could be provided. A Steering Committee, comprised of representatives from nearly every stakeholder organization within the mental health system, provided technical assistance and insight. Finally, the training was pilot tested with direct care staff and administration at two hospitals. We welcome you to join us in our collective efforts to find and use creative approaches and strategies to ensure that we help and not harm those whom we serve. Charles G. Curie, M.A., A.C.S.W. Administrator Substance Abuse and Mental Health Services Administration 3 Roadmap to Seclusion and Restraint Free Mental Health Services PREFACE The past decade has yielded many divergent views on the practice of seclusion and restraint. It is an area rife with tension, disagreement, and fear. One consumer recently said that he thought restraint was “too polite” a term for what he had experienced. He went on to say (NAC/SMHA In Our Own Voices Survey, 2001): “I was tied up and tied down. It was terrifying, dehumanizing, degrading, and painful. Along with the restraint was the forced injection of Haldol. Not only was the leather biting into my wrists, my body had been invaded by a substance that caused a feeling of intense internal violation.” In 1999, landmark national legislation led to tighter controls on the use of restraints in psychiatric hospitals. Federal and State mental health authorities furthered the development and implementation of policy change and the active pursuit of a reduction and ultimate elimination of seclusion and restraint. The National Association of State Mental Health Program Directors (NASMHPD) publication, Creating Violence and Coercion Free Mental Health Environments: A National Initiative and Call to Action, identifies mandatory systemic changes that must occur when reducing the use of seclusion and restraint. The State of Pennsylvania demonstrated successfully that commitment to reform does indeed make a difference with their Leading the Way Seclusion and Restraint Initiative. External monitoring holds the key to eliminating seclusion and restraint according to some leaders. Others suggest strong administrative leadership. Some suggest a legislative solution. Some suggest better behavioral intervention strategies. However, virtually every constituent group involved in meaningful systems reform recognizes the need for ongoing training and education efforts. Roadmap to Seclusion and Restraint Free Mental Health Services explores sustainable solutions and strategies towards supporting the belief in the elimination of seclusion and restraint in the treatment of people with serious mental illness or children with serious emotional disturbance. “It is not possible to solve a problem with the same consciousness that created it” (Albert Einstein). This manual is intended to build bridges and increase respect and understanding between consumers and direct care staff. All stakeholders must be present at the table and engage in the dialogue to develop seclusion and restraint free environments. It is the underlying premise of this manual that the role of the direct care staff is critical to meaningful system change. Together, we are partners and champions in the reduction and elimination of seclusion and restraint. 4 Roadmap to Seclusion and Restraint Free Mental Health Services HOW TO USE THIS MANUAL The goal of this curriculum is to provide direct care staff the tools and knowledge needed to improve their skills in preventing and ultimately eliminating the use of seclusion and restraint. “Direct care staff” refers to individuals who work directly with consumers, such as nurses, psychiatric technicians, therapists, psychologists, and many others. Administrators will also find this training helpful. The curriculum is unique in that it is written from consumer perspectives, and thus helps direct care staff work from a consumer-based philosophy. It can be used in a variety of settings, such as State institutions, hospitals, or outpatient centers, for staff development, training, and in-service education. This training package provides all the background material, lecture points, and PowerPoint slides necessary for a facilitator to implement the seven training modules that demonstrate how to eliminate the use of seclusion and restraint. All the handouts for the participants are included. This is a valuable resource in places where facilitators cannot obtain needed and up-to-date information. Instructions on how to obtain optional resources, such as videos, are included. Prior training for facilitators is not necessary; however, facilitators must be familiar with consumer perspectives of the mental health system to be effective in teaching this curriculum. Co-facilitating with a consumer/survivor, family member, or direct care staff helps bring more than one perspective to the training. To get the maximum benefit, it is recommended that at least one facilitator be a mental health consumer. Training formats that have proven particularly effective include teams of staff and former consumers working together as trainers. This team approach ensures that the perspectives of both parties are reflected. It also provides a model of clear and direct communication between the parties involved. The team approach can be used regardless of setting or population. Teams involving children and youth or individuals with developmental disabilities can be particularly powerful as an illustration of how people with diverse skills and experiences can work together. Curriculum content is based on the concept that recovery and wellness are essential in providing alternatives to the use of seclusion and restraint. Individuals must be treated with respect. The use of seclusion and restraint strips a person of dignity, privacy, and potentially, safety. When a person is put in restraints, it implies that he or she is less than human. Everyone’s human rights are cheapened when the dignity of a vulnerable person in society is ignored. The use of seclusion or restraints does nothing to advance an individual’s recovery, resilience, or self-determination, but has the opposite effect. 5 Roadmap to Seclusion and Restraint Free Mental Health Services Several States that have adopted comprehensive approaches to reducing the use of seclusion and restraint have found that staff training is a critical component of their initiatives. Training interventions have reduced the use of seclusion and restraint, helped staff understand the experience from the perspective of the individuals involved, and improved communication and problem-solving skills. Training that includes a dialogue between staff and consumers about their experiences addresses the impact that seclusion and restraint has on the individuals involved, and is a powerful tool for creating a safe and respectful milieu. Training programs that focus on early identification and intervention in conflict situations are also essential for achieving this result. Note about terms used: Many terms have been used to refer to individuals who have personal experience with psychiatric disabilities. The words client, patient, and consumer, are common, as are the words ex-patient and survivor. Some people use the term consumer/ survivor/ex-patient, or c/s/x for short. The language of people first continues to evolve. Not everyone agrees on using the same terms. Thus, the training modules use a variety of these terms throughout. The language you decide to use must denote respect for the individual and his/her firsthand experience. The training is divided into seven modules plus a resources section: • Module 1, through the perspectives of mental health consumers and direct care staff at State hospitals, increases the understanding of the participants of the personal experience of seclusion and restraint. • Module 2 discusses the impact of trauma on consumers and on direct care staff. • Module 3 explores the change needed to ensure cultural change within an institution. The role that staff play is discussed. Survey results from consumers across the country are reviewed. A model for reform is also reviewed. • Module 4 explores the concepts of resiliency and recovery from the consumer perspective. • Module 5 identifies, from the consumer and staff perspectives, strategies that will lead to the reduction and elimination of seclusion and restraint. • Module 6 discusses sustainable change through both consumer and staff involvement. • Module 7 presents a review of the first six modules and the development of both personal and workplace action plans to reduce and eliminate the use of seclusion and restraint. • The Resources section contains Web sites and policy and position statements of various organizations. The entire training takes approximately 21-24 hours to complete. The facilitators can determine the schedule of the training. It can be done in 3 full days, 6 half days, or in some other arrangement. Each module requires approximately 3 hours, but can be shortened or lengthened to meet the needs of the training group. Modules are freestanding and can be presented individually, although each module builds on the preceding one and the course should be presented in its entirety. 6 Roadmap to Seclusion and Restraint Free Mental Health Services Participants should be provided with ring binders with blank pages for notes and writing assignments. They will be asked to write on Journal topics and Take Action Challenges during the training to integrate their learning with their work and develop action plans. Upper management must be present and supportive when the participants are developing their Workplace Action Plans. We suggest printing out the required number of copies of the handouts that you choose to use with your class before the training begins. You can also print out the background reading (Background for the Facilitators pages) and lecture notes (Presentation pages) for yourself and any other facilitators. See the table of contents page for the list of handouts. In addition to the pages marked “Handout,” you may also wish to print out items from the Resources section and slides from the PowerPoint presentation (these include the learning objectives for each module). To print the Power Point slides in the most readable format, select “Print,” “Handouts,” and “Pure Black and White.” The ring binders should be large enough to accommodate all of these handouts. The following is a list of materials, other than handouts, that are needed for each training module. Please note that in some cases, the facilitators will need to obtain materials such as videos and permission to use articles in advance. For all sessions, have the following materials on hand: • • • • • • • Nametags or name tents Chalkboard/chalk/white board/flip chart Paper/pens/markers Scissors Tape Overhead projector or LCD projector/screen Ring binders with blank pages for participants Special arrangements are needed for the following: Module 1 • Arrange for panel of consumers and direct care staff o Microphones for panel participants as needed o Table/chairs for panel participants o Water/glasses for panel participants o Stipends for consumer participants • Apply for permission to use Hartford Courant articles 7 Roadmap to Seclusion and Restraint Free Mental Health Services Module 3 • Obtain Pennsylvania Model video • TV/VCR • 3 x 5 index cards Module 4 • Obtain Pat Deegan video • TV/VCR Module 5 • Make designs for communication exercise Module 6 • Obtain Advance Crisis Planning video from University of Illinois, Chicago • TV/VCR Module 7 • Jana Stanfield CD, If I Were Brave • Boom box 8 Roadmap to Seclusion and Restraint Free Mental Health Services ROADMAP TO SECLUSION AND RESTRAINT FREE MENTAL HEALTH SERVICES TRAINING MANUAL PROJECT STEERING COMMITTEE American Psychiatric Association David Fassler, M.D. Attorney and Advocate J. Rock Johnson, J.D. National Association of Protection and Advocacy Systems Gary Gross Sister Witness International Laura Prescott Center for Mental Health Services, Substance Abuse and Mental Health Services Administration Paolo del Vecchio Carole Schauer Bazelon Center for Mental Health Law Robert Bernstein, Ph.D. National Mental Health Association Brian Coopper Joint Commission on Accreditation of Healthcare Organizations Mary Cesare–Murphy, Ph.D. National Association of Consumer/ Survivor Mental Health Administrators John Allen Susan Kadis Karen Kangas, Ed.D. Nancy Kunak Dan Powers Joyce Jorgenson Erica Buffington Health Care Financing Administration Catherine Hayes University of Pennsylvania Wanda K. Mohr, Ph.D., R.N., FAAN The Federation of Families For Children’s Mental Health Gail Daniels National Council for Community Behavioral Healthcare Charles Ray Tom Liebfried (alternate) Pennsylvania Department of Public Welfare Charles G. Curie Child Welfare League of America Lloyd Bullard National Association of State Mental Health Program Directors Bob Glover Rupert R. Goetz, M.D. Jennifer Urff American Psychiatric Nurses Association Melissa Reese Department of Children and Families Hartford, CT Gary M. Blau, Ph.D. American Psychological Association Richard H. Hunter, Ph.D. 9 Roadmap to Seclusion and Restraint Free Mental Health Services CONTENTS MODULE 1: The Personal Experience of Seclusion and Restraint Background for the Facilitators Presentation Overview Exercise: Getting to Know You (15 minutes) Challenge Assumptions Consumer Complaints Lack of Uniform National Standards Lack of Adequate Staff Training Safety Inappropriate Uses of Seclusion and Restraint Treatment Approaches to Reduce Seclusion and Restraint Special Needs Populations Consumer Panel (1 hour) Exercise: Hartford Courant articles (20 minutes) Exercise: Personal Perspective: Consumers (15 minutes) Exercise: Personal Perspective: Direct Care Staff (20 minutes) Handouts for Participants Preventing, Reducing, and Eliminating Seclusion and Restraint with Special Needs Populations Deadly Restraint—Hartford Courant series Consumer Quotes Direct Care Staff Quotes References MODULE 2: Understanding the Impact of Trauma Background for the Facilitators Presentation Overview Exercise: Trauma Background (25 minutes) Definitions Related to Trauma 10 Roadmap to Seclusion and Restraint Free Mental Health Services Common Reactions to Trauma Exercise: Common Reactions to Trauma (20 minutes) Effects of Trauma on the Brain Differential Response to Threats Assessment of Trauma Exercise: Assessment of Trauma (20 minutes) Retraumatization via Hospitalization De-Escalation Preferences Exercise: De-Escalation Preferences (20 minutes) What Survivors Want in Times of Crisis Staff Trauma (Secondary Traumatization) Healing from Trauma Grounding Techniques Exercise: Grounding Techniques (10 minutes) Journal/Take Action Challenge (15 minutes) Handouts for Participants Journal Topics and Take Action Challenges for Modules 1 & 2 National Association of State Mental Health Program Directors (NASMHPD) Position Statement on Services and Supports to Trauma Survivors Excerpts from Kate Reed’s Speech Position Paper on Trauma and Abuse Histories What Can Happen to Abused Children Some Common Reactions to Trauma Trauma Assessment for Department of Mental Health Facilities/ Vendors Guidelines for De-Escalation Preference Form De-Escalation Form for Department of Mental Health Facilities/ Vendors Excerpts from Dealing With the Effects of Trauma: A Self-Help Guide Grounding Techniques Web Sites Related to Trauma Resources on Secondary Trauma References MODULE 3: Creating Cultural Change Background for the Facilitators 11 Roadmap to Seclusion and Restraint Free Mental Health Services Presentation Exercise: “Flowers Are Red” (10 minutes) Overview Pennsylvania: A Model for Reform Video: Leading the Way: Toward a Seclusion and Restraint Free Environment (17.5 minutes) Cultural Change Exercise: “My Organizational Culture Currently Is…” (30 minutes) Exercise: “People With a Mental Health Diagnosis Are…” (15 minutes) In Our Own Voices Exercise: What Would Have Been Helpful to Hear (15 minutes) Handouts for Participants “Flowers Are Red” “My Organizational Culture Currently Is…” NASMHPD Review of Literature Related to Safety and Use of Seclusion and Restraint What Would Have Been Helpful in Preventing the Use of Seclusion and Restraints for You? What Would Have Been Helpful for You to Hear? What Other Options May Have Been Beneficial? References MODULE 4: Understanding Resilience and Recovery from the Consumer Perspective Background for the Facilitators Presentation Overview Resilience Exercise: Someone Who Believed in Them (20 minutes) Recovery Exercise: Recovery as a Journey of the Heart (35 minutes) Exercise: What Are We Recovering From? (15 minutes) Journal/Take Action Challenge (20 minutes) Handouts for Participants Journal Topics and Take Action Challenges for Modules 3 & 4 Someone Who Believed in Them Helped Them to Recover 12 Roadmap to Seclusion and Restraint Free Mental Health Services Recovery as a Journey of the Heart Recovery From Mental Illness—Guiding Vision Resources: Self-Help Guides References MODULE 5: Strategies to Prevent Seclusion and Restraint Background for the Facilitators Presentation Overview Wellness Recovery Action Plan (WRAP) Exercise: Developing a Wellness Recovery Action Plan (30 minutes) Drop-In Centers Recovery Through the Arts Comfort Rooms Service Animals Psychiatric Advance Directives Exercise: Creating My Own Psychiatric Advance Directive (30 minutes) Prime Directives Communication Strategies Exercise: How Hard Can Communication Be? (15 minutes) Alternative Dispute Resolution/Mediation Technical Assistance Centers Handouts for Participants Examples of Consumer WRAPs Developing a WRAP How to Set Up a Comfort Room Why Should I Fill Out a Psychiatric Advance Directive? Ten Tips for Completing an Effective Advance Directive Psychiatric Advance Directive Practice Worksheet Six Essential Steps for Prime Directives Anticipated Benefits of Prime Directives Children’s and Adolescents’ Mental Health Services Technical Assistance and Research Centers Research, Training, and Technical Assistance Centers References 13 Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 6: Sustaining Change Through Consumer and Staff Involvement Background for the Facilitators Presentation Overview Leadership Exercise: National Technical Assistance Center Networks (15 minutes) Exercise: Direct Care Staff Leadership (15 minutes) Debriefing Exercise: Debriefing Role Play (25 minutes) Advance Crisis Planning Video: Increasing Self-Determination: Advance Crisis Planning (13 minutes) Data Collection External Monitoring Role of the Champion Journal/Take Action Challenge (20 minutes) Handouts for Participants Journal Topics and Take Action Challenges for Modules 5 & 6 Protection and Advocacy List National Technical Assistance Center Networks Newsletter Debriefing Survey for Consumers References MODULE 7: Review and Action Plan Background for the Facilitators Presentation Review Personal Action Plan Exercise: Personal Action Plan (1 hour) Workplace Action Plan Exercise: Workplace Action Plan (1 hour) Certificates of Completion Wrap Up and Evaluation 14 Roadmap to Seclusion and Restraint Free Mental Health Services Handouts for Participants Personal Action Plan Workplace Action Plan Certificate of Completion Evaluation RESOURCES Web Sites Policies and Position Statements 1. American Nurses Association 2. American Psychiatric Nurses Association 3. Federation of Families for Children’s Mental Health 4. NAMI 5. National Association of State Mental Health Program Directors 6. National Mental Health Association 7. Pennsylvania: Restraints, Seclusion and Exclusion in State Mental Hospitals and Restoration Center 15 Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 1 The Personal Experience of Seclusion and Restraint 1 Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 1 The Personal Experience of Seclusion and Restraint “When I participated in my first restraint experience I vomited.” —Mental health worker Learning Objectives Upon completion of this module the participant will be able to: • Outline the issues and concerns regarding the practice of seclusion and restraint. • Describe the use of seclusion and restraint with special needs populations. • Understand the personal experience of seclusion and restraint for people diagnosed with a mental illness. • Understand the personal experience of seclusion and restraint for direct care staff. Module 1 The Personal Experience of Seclusion and Restraint 2 Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 1: THE PERSONAL EXPERIENCE OF SECLUSION AND RESTRAINT Background for the Facilitators. . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Presentation (3 hours) . . . . . . . . . . . . . . . . . . . . . . . . . . . Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Exercise: Getting to Know You (15 minutes) . . . . . . . . . . Challenge Assumptions. . . . . . . . . . . . . . . . . . . . . . . . . . . Consumer Complaints . . . . . . . . . . . . . . . . . . . . . . . . . . . Lack of Uniform National Standards . . . . . . . . . . . . . . . . . . Lack of Adequate Staff Training . . . . . . . . . . . . . . . . . . . . . Safety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Inappropriate Uses of Seclusion and Restraint . . . . . . . . . . . Treatment Approaches to Reduce Seclusion and Restraint. . . Special Needs Populations. . . . . . . . . . . . . . . . . . . . . . . . . Consumer Panel (1 hour) . . . . . . . . . . . . . . . . . . . . . . . . . Exercise: Hartford Courant articles (20 minutes). . . . . . . Exercise: Personal Perspective: Consumers (15 minutes) . Exercise: Personal Perspective: Direct Care Staff . . . . . . (20 minutes) Handouts for Participants . . . . . . . . . . . . . . . . Preventing, Reducing, and Eliminating Seclusion and Restraint with Special Needs Populations Deadly Restraint—Hartford Courant series . . . . Consumer Quotes . . . . . . . . . . . . . . . . . . . . . Direct Care Staff Quotes . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . Module 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7 . .8 . 10 . 11 . 12 . 13 . 14 . 14 . 16 . 16 . 17 . 18 . 19 . 20 . 21 . . . . . . . . . . . . . . 22 . . . . . . . . . . . . . . 22 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 . 52 . 55 . 57 The Personal Experience of Seclusion and Restraint 3 Roadmap to Seclusion and Restraint Free Mental Health Services Overview This module covers three areas: (1) a brief overview of concerns and issues associated with the practice of seclusion and restraint; (2) providing staff an opportunity to hear from people diagnosed with a mental illness about what it is like to be secluded and restrained; and (3) providing direct care staff an opportunity to hear from each other about the personal effects of putting people in seclusion and restraints. Module 1 is designed to enhance awareness of the personal experience of restraints and the devastating and dehumanizing reality that such traumatic experience brings to the lives of individuals. Direct care staff and consumers live with many assumptions about people diagnosed with mental illnesses. But each of these assumptions (e.g., “They are chronics,” “Seriously and persistent mental illness (SPMI’s),” “They are crazy and do not need to be listened to,” “We must decide what is best for them) is a cliché that could be discarded if there were openness to alternative ways of understanding. This is the first step in changing a culture. It is not easy. In general, people are not comfortable with change. But we all must begin to really understand the effect of the practice of restraints and challenge long held perceptions. It is about really hearing someone else—hearing the voice of the consumer. When we truly understand the experience, changes can begin within ourselves, as well as within the culture of the system. Various requirements regarding seclusion and restraint continue to be issued. The Federal Government, Joint Accreditation Commission of Hospital Organizations (JACHO), consumer and family organizations, professional organizations, and State mental health authorities are all invested in the reduction and elimination of seclusion and restraint as a practice within treatment settings. Although regulations are critically important, in order for sustainable change to occur a shared vision must be present. In order for a shared vision and commitment to occur, we must begin by listening. Key issues related to seclusion and restraints include deaths, physical injuries, lack of reporting, consumer complaints, use of seclusion and restraint with high-risk populations, and overuse of restraints. In addition, lack of uniform national standards, lack of adequate staff training, and fears related to staff safety also impact the practice of seclusion and restraint. Module 1 The Personal Experience of Seclusion and Restraint 4 BACKGROUND BACKGROUND FOR THE FACILITATORS: THE PERSONAL EXPERIENCE OF SECLUSION AND RESTRAINT Roadmap to Seclusion and Restraint Free Mental Health Services In mental health treatment settings, it is very common for consumers and providers to see the world through different lenses and to have different meanings for common words. Much of the conflict that arises in these settings results from people operating from their own worldview without acknowledging that of another. Definitions of safety depend, quite often, on who is doing the defining. The information in this section comes directly from the National Technical Assistance Center’s report on managing conflict cooperatively (National Association of State Mental Health Program Directors [NASMHPD], 2002). Special Needs Populations The use of seclusion and restraint with special needs populations needs to be critically examined. Children are twice as likely as adults to be restrained (Weiss, 1998). More than 26 percent of deaths reported in the Hartford Courant series in 1998 were children — almost twice the proportion of their population in psychiatric hospitals. A large percentage of women receiving treatment have a past history of trauma and/or abuse, and seclusion and restraint can cause further damage (NYS OMH, 1994; MA DMH, 1996). In one study, Caucasian hospital staff physically restrained non-Caucasian consumers nearly four times as often as they restrained Caucasian consumers (Bond et al., 1988). Persons who are hospitalized on an involuntary basis are more likely to be subject to seclusion and restraint than those hospitalized on a voluntary basis (Solof et al., 1989). The National Association of State Mental Health Program Directors (NASMHPD) has made several recommendations regarding special needs populations. Personal Perspective: Consumers A New York study indicated that 94 percent of consumers who had been restrained had at least one complaint with 50 percent complaining of unnecessary force and 40 percent indicating psychological abuse (Weiss, 1998). Research analyses by Ray and colleagues (1996) also indicated that consumers (1) had predominately negative reactions to seclusion and restraint, (2) did not know the reason for their seclusion, (3) felt that it was humiliating, punishing, and depressing, and (4) thought that staff control was a primary factor. Module 1 The Personal Experience of Seclusion and Restraint 5 BACKGROUND Safety New and emerging treatment approaches and services make it possible to treat people with severe symptoms without resorting to coercive strategies. There is a significant gap between what we know about preventing violence and creating a safe clinical environment and what is practiced in many mental health settings. Roadmap to Seclusion and Restraint Free Mental Health Services Consumer Panel—Highlight of This Module One of the activities in this module includes a panel presentation by consumers who have experienced either seclusion and/or restraint. This panel presentation is part of the uniqueness of this training, which is based on the consumer perspective. Consumers bring a wealth of knowledge through lived experience. Four panel members are strongly recommended: two adults who have experienced seclusion and/or restraint and two adults who as adolescents, experienced seclusion and/or restraint. It must be made clear that they cannot and do not represent all consumers. Your local Office of Consumer Affairs in the Department of Human Services should be able to help you locate panel members. Another good resource would be local or State consumer organizations. Compensation or a stipend for panel members is strongly recommended. This further validates the consumer experience and is a sign of respect. Personal Perspective: Direct Care Staff Participants will have an opportunity to hear their colleagues talk about the experience of putting people in seclusion and restraint. Most direct care staff members are dedicated, hard working people who have no malicious intent toward the individual people with whom they work. Direct care staffs are often shorthanded, underpaid and undervalued. They are professionals with minds, hearts and souls. Promising practices indicate that training direct care staff is a key to eliminating the use of seclusion and restraint. Direct care staffs possess the informal power to contribute to system changes that eliminate the use of seclusion and restraint. Module 1 The Personal Experience of Seclusion and Restraint 6 BACKGROUND A powerful way to understand the personal experience of seclusion and restraint is to hear from people who have had this experience. Consumers and members of the professional mental health community are beginning to realize the importance of establishing and maintaining rapport as an effective means of developing productive communication. This increases the likelihood of understanding each other, promotes beneficial treatment outcomes, and decreases and/or eliminates the use of seclusion and restraint. Developing trust, mutual understanding, and respect are essential in building needed rapport and creating alliances for eliminating the use of seclusion and restraint. Roadmap to Seclusion and Restraint Free Mental Health Services As facilitators, you will set the tone for the entire training in this first session. Welcome participants and introduce yourselves as facilitators, including who you are and how you became interested in this work. The participants will get a chance to introduce themselves in the first exercise. It is important to create a respectful learning atmosphere where disagreement is welcomed and various viewpoints are heard. Also, the norms you set for coming back on time from breaks and participating in class will carry on throughout the training. Always make sure everyone has a nametag or name tent. Begin by going over the learning objectives. Learning Objectives Upon completion of this module the participant will be able to: Module 1 • Outline the issues and concerns regarding the practice of restraint and seclusion • Describe the use of restraint and seclusion with special needs populations • Understand the personal experience of restraint and seclusion for people diagnosed with a mental illness • Understand the personal experience of restraint and seclusion for front line staff The Personal Experience of Seclusion and Restraint 7 PRESENTATION PRESENTATION Roadmap to Seclusion and Restraint Free Mental Health Services Overview The issue of reducing/eliminating the use of seclusion and restraint is about a total shift to a recovery-based model. • For a shared vision and commitment to occur, we must begin by listening. Some of the things you hear may be difficult and feel challenging. Some of the things you have to say may be hard to say. This training was designed to implement change—so please hear and say the difficult things. • The goal is to create an environment where all viewpoints are heard, including ones that are not in agreement with the philosophy of this manual. • What we are asking from each participant is a commitment to really listen and hear each other. • As we conduct this training, we want to be sensitive to the language we use because it sends a message. Language can set up a barrier between people. We are trying to build bridges between people. • In this manual, we have chosen to use “direct care staff” instead of “front line staff”. “Front line staff” suggests the experience of war. We are trying to create a healing environment, not a war zone. • We have also chosen to use the word “consumer” or “person diagnosed with a mental illness” rather than “patient.” We will cover language more extensively later on. Put up the Power Point of the “Listen” poem, and either read the poem yourself or ask different participants to read each section. Module 1 The Personal Experience of Seclusion and Restraint 8 PRESENTATION “The initiative to reduce the use of seclusion and restraint is part of a broader effort to reorient the State mental health system toward a consumer focused philosophy that emphasizes recovery and independence…Seclusion and restraint with its inherent physical force, chemical or physical bodily immobilization and isolation do not alleviate human suffering. It does not change behavior.” Charles Curie, Administrator SAMSHA Roadmap to Seclusion and Restraint Free Mental Health Services When I ask you to listen to me and You start giving me advice, You have not done what I have asked. When I ask you to listen to me and You begin to tell me why I shouldn’t feel that way, You are trampling on my feelings. When I ask you to listen to me and You feel you have to do something to solve my problem, You have failed me. Strange as that may seem. Listen: All that I ask you to do is listen. Not talk or do—just hear me. When you do something for me That I can and need to do for myself You contribute to my fear and inadequacy. But when you accept as a simple fact That I feel what I feel, no matter how irrational Then I can quit trying to convince you And get about this business of understanding what’s behind them. So please listen and just hear me. And, if you want to talk, wait a minute for your turn And I’ll listen to you. —Anonymous Module 1 The Personal Experience of Seclusion and Restraint 9 PRESENTATION Listen Roadmap to Seclusion and Restraint Free Mental Health Services Getting to Know You OBJECTIVE: Give an opportunity for participants to get to know one another and begin discussing their own experiences related to seclusion and restraint. PROCESS: Ask participants to pair up with a person they don’t know very well. Have them introduce themselves to each other and share their first experience with seclusion and restraint. If time allows, also have them tell their most difficult seclusion and restraint experience. What was their most recent experience with seclusion and restraint? Have each participant introduce their partner and at least one feeling word (e.g., sad, elated, scared, frightened, powerful, repulsed) to describe their experience. On the chalkboard or dry erase board, keep a list of feelings expressed. DISCUSSION QUESTIONS: What are the similarities you heard about first experiences of seclusion and restraint? Which feelings were most common? How has your experience of seclusion and restraint changed/stayed the same over time? MATERIALS REQUIRED: Chalkboard or dry erase board and writing utensil APPROXIMATE TIME REQUIRED: 15 minutes Module 1 The Personal Experience of Seclusion and Restraint 10 PRESENTATION Exercise/Discussion—Module 1 Roadmap to Seclusion and Restraint Free Mental Health Services Assumptions to be Challenged • Seclusion and restraints are therapeutic • Seclusion and restraints keep people safe • Seclusion and restraints are not meant to be punishment • Staff know how to recognize potentially violent situations • Seclusion and restraints are not therapeutic. There is actually no evidence-based research that supports the idea that restraints are therapeutic. • Seclusion and restraints do not keep people safe. The harm is well documented; not only the physical harm, but also the emotional and mental harm. Restraints actually harm and can cause death. Broken bones and cardiopulmonary complications are associated with the use of seclusion and restraint (FDA, 1992; NYS OMH, 1994). • Even though most staff would say that seclusion and restraints are not used as punishment, 60-75 percent of consumers view it as punishment for refusal to take meds or participate in programs. • Holzworth and Wills, 1999, conducted research on nurses’ decisions based on clinical cues with respect to patients’ agitation, self-harm, inclinations to assault others, and destruction of property. Nurses agreed only 22 percent of the time on what constituted a violent situation. The longer nurses have worked in mental health positively correlates with greater consistency in determining potentially violent situations. • In 1998, the Hartford Courant completed a series of investigative reports concerning the use of seclusion and restraints and found an alarming number of deaths. The majority of deaths related to seclusion and restraint are a result of asphyxiation or cardiac-related issues. Module 1 The Personal Experience of Seclusion and Restraint 11 PRESENTATION Challenge Assumptions • This training challenges the following assumptions that are often present in mental health: Roadmap to Seclusion and Restraint Free Mental Health Services Consumer Complaints A New York study indicated that 94% of consumers who had been restrained had at least one complaint with one-half complaining of unnecessary force and 40% indicating psychological abuse (Weiss, 1998). • In prison, seclusion is seen as one of the worse punishments possible. Is it any different in a mental health facility? Module 1 The Personal Experience of Seclusion and Restraint 12 PRESENTATION • Even more disturbing was that many of the deaths were unreported. Few States require the reporting and investigation of a death in a private or State psychiatric facility. The Harvard Center for Risk Analysis at the Harvard School of Public Health estimated that the annual number of deaths range from 50 to 150 per year—which translates into one to three deaths every week (Weiss, 1998). Roadmap to Seclusion and Restraint Free Mental Health Services Consumers who have been restrained or secluded indicate: • Predominately negative reactions • Did not know the reason for the restraint/seclusion • It was humiliating, punishing, and depressing • Staff control was a primary factor Lack of Uniform National Standards Lack of national standards has reportedly generated wide variability in the use of restraint and seclusion – including potentially dangerous and unsafe practices. Module 1 The Personal Experience of Seclusion and Restraint 13 PRESENTATION Consumer Complaints Ray & Rappaport, 1993 Roadmap to Seclusion and Restraint Free Mental Health Services Lack of Adequate Staff Training • A lack of adequate staff training has been cited as contributing significantly to deaths, injuries, and other abuses (Weiss, 1998). • Currently, there are no national uniform minimum training standards for the use of seclusion and restraint. • Three States– California, Colorado, and Kansas – license aides in psychiatric facilities with required training. • Decreases in staffing patterns may increase risk factors. Safety • The rate of injuries among mental health workers in hospitals is higher than the number of workers injured in the construction and lumber industries. • Often times, one of the staff fears about eliminating seclusion and restraint is that there will be more staff injuries. Research indicates that the opposite happens. As the rate of seclusion and restraints decreases, so does the rate of staff injuries. • In mental health treatment settings, it is very common for consumers and providers to see the world through different lenses and to have different meanings for common words. • Much of the conflict that arises in these settings results from people operating from their own worldview without acknowledging that of another. • “Safety” is often used in hospitals to justify the use of procedures such as seclusion and restraint and may mean very different things to consumers and staff. Laura Prescott initially developed the following chart and it was adapted at the National Technical Assistance Center for State Mental Health Planning (NTAC) Expert’s meeting. Module 1 The Personal Experience of Seclusion and Restraint 14 PRESENTATION • National standards continue to evolve. However, there are no uniform national standards governing how and when to use seclusion and restraint in psychiatric facilities. • The Joint Commission on Accreditation of Hospital Organizations (JCAHO) and the American Psychiatric Association (APA) have guidelines on this topic – but neither of these are mandated. • Landmark patients’ rights legal findings (Wyatt v. Stickney, 1972; Younberg v. Romeo, 1982) set forth minimum legal requirements regarding seclusion and restraint, but do not address issues surrounding clinical standards. Roadmap to Seclusion and Restraint Free Mental Health Services SERVICE RECIPIENTS SERVICE PROVIDERS Safety = minimizing loss of control Safety = minimizing loss of control over their lives over the environment and risk Safety Means •Maximizing choice •Authentic relationships •Exploring limits •Defining self •Defining experiences without judgment •Receiving consistent information ahead of time •Freedom from force, coercion, threats, punishment, and harm •Owning and expressing feelings without fear Safety Means: •Maximizing routine and predictability •Assigning staff based on availability •Setting limits •Designating diagnoses •Judging experiences to determine competence •Rotating staff and providing information as time allows •Use of force (medication, restraint, seclusion) to prevent potentially dangerous behavior •Reducing expressions of strong emotion Source: The Critical Step: Seeing Different Perspectives (from the National Technical Assistance Center’s report on managing conflict cooperatively [NASMHPD, 2002]) • The chart illustrates how the word “safety,” which is often used in hospitals to justify the use of procedures such as seclusion and restraint, may mean very different things to consumers and staff. • Understanding these different definitions is critical to seclusion and restraint reduction. • New and emerging treatment and service approaches make it possible to treat people with severe symptoms without resorting to coercive strategies. • There is a significant gap between what we know about preventing violence and creating a safe clinical environment and what is practiced in many mental health settings. • In 2002, the National Association of State Mental Health Program Directors and the National Technical Assistance Center for State Mental Health Planning (NTAC) sponsored a national experts’ meeting on Managing Conflict Cooperatively: Making a Commitment to Nonviolence and Recovery in Mental Health Treatment Settings. The following section on safety is taken directly from their report. Module 1 The Personal Experience of Seclusion and Restraint 15 PRESENTATION Conflicting Definitions of Safety Roadmap to Seclusion and Restraint Free Mental Health Services Inappropriate Uses of Seclusion and Restraint • Control the Environment • Coercion • Punishment Treatment Approaches to Reduce Seclusion and Restraint • The Medical Directors of the National Association of State Mental Health Program Directors reviewed the literature and identified factors in their report (NASMHPD, 1999) that contribute to a safe environment in which the use of seclusion and restraint is minimized and factors that are present when seclusion and restraint are more likely to be used. • The Medical Directors of the National Association of State Mental Health Program Directors report on restraint and seclusion (NASMHPD, 1999) indicates the following well-documented, effective practices exist to reduce violence and simultaneously reduce or eliminate the use of restrictive measures such as seclusion and restraint: Module 1 The Personal Experience of Seclusion and Restraint 16 PRESENTATION Inappropriate Uses of Seclusion and Restraint • Seclusion and restraint practices are sometimes used to: ° Control the environment – to curtail a consumer’s movement to compensate for having inadequate staff on the ward, or to avoid providing appropriate clinical interventions. ° Coerce – to force a consumer to comply with the staff’s wishes. ° Punish – to impose penalties on consumer behaviors. Roadmap to Seclusion and Restraint Free Mental Health Services • Peer-delivered services • Self-help techniques • New medications • Emphasis on recovery • Understanding the relationship between trauma and mental illness Special Needs Populations Distribute participant handout on Preventing, Reducing, and Eliminating Seclusion and Restraint with Special Needs Populations. Children • More than 26 percent of deaths reported in the Hartford Courant series were children — almost twice the proportion of their population in psychiatric hospitals. • Children are twice as likely as adults to be restrained (Weiss, 1998; Cooper, 1998; Milliken, 1998). • Children are further traumatized by being restrained and most see this as a form of punishment (Mohr, 1999). Women • At least 70 percent of women in psychiatric facilities have a past history of trauma and or abuse, and seclusion or restraint can cause further damage (Craine et al., 1988). People of color • In one study, Caucasian hospital staff physically restrained non-Caucasian consumers nearly four times as often as they restrained Caucasians (Bond et al., 1988). Other studies have had similar results. Module 1 The Personal Experience of Seclusion and Restraint 17 PRESENTATION Treatment Approaches to Reduce Seclusion & Restraint Roadmap to Seclusion and Restraint Free Mental Health Services Involuntary hospitalizations • Persons who are hospitalized on an involuntary basis are more likely to be subject to seclusion and restraint (Solof et al., 1989). CONSUMER PANEL (1 hour) Please refer to Background for the Facilitators for advice on selecting the Consumer Panel. Panel members should be asked to speak about seclusion and restraint from their experience. They should tell more than just what happened, but how it happened. What was the personal impact of seclusion and/or restraint upon each? What would have prevented the use of seclusion and restraint? Sample ground rules for panelists and the audience • Listen to others and try to be open to their ideas. • Share your ideas in order to learn from each other. • Show respect for each other by not carrying on secondary conversations when someone else is talking. • Respect one another by letting the other person have their say without interruption. • Stay within predetermined time limit. Checklist of supplies for the panel • Table/chairs • Microphones if needed (check to make sure they work) • Water/glasses • Paper/pens If possible conduct a rehearsal to predetermine and inform speakers of the following: • Time allowed for each speaker • Subject matter • Order of speaking • Question-and-answer period at the end Module 1 The Personal Experience of Seclusion and Restraint 18 PRESENTATION Geriatric mental health • Geriatric mental health is defined as specialized services for individuals 65 years old or older • Aging may cause changes in the ability to communicate. Individuals who are unable to communicate will be more likely to experience seclusion and restraint (NASMHPD, 1999). Roadmap to Seclusion and Restraint Free Mental Health Services Hartford Courant Articles The Hartford Courant articles highlight the fact that 142 people, many of them children, died in one year as a result of improper or excessive use of restraints. These articles illustrate the need for the elimination of the use of seclusion and restraint. It often takes articles such as these to get systems and the general public to sit up and take notice. OBJECTIVE: To review the information in The Hartford Courant articles concerning seclusion and restraint. PROCESS: Permission to reprint or copy these articles must be obtained from The Hartford Courant at www.tmsreprints.com/forms/reprints/ hartford.html or call (800) 661-2511. Divide participants into six groups. Give each group a different Hartford Courant article and have them read it. Ask each group to develop some creative way to relay the information to the large group. They can talk, use the chalkboard, etc. Encourage creativity. DISCUSSION QUESTIONS: MATERIALS REQUIRED: APPROXIMATE TIME REQUIRED: How many of you had heard this information previously? What did you learn from the articles? Copies of The Hartford Courant articles Chalkboard, whiteboard, or flip chart and writing utensil 20 minutes Module 1 Presentation 19 PRESENTATION Exercise/Discussion—Module 1 Roadmap to Seclusion and Restraint Free Mental Health Services Personal Perspective: Consumers OBJECTIVE: To give an opportunity for participants to discuss consumer experiences and feelings around the practice of seclusion and restraint. PROCESS: Groups of no more than six participants each. Distribute the handout Consumer Quotes. Have each group facilitate a discussion about the quotes. DISCUSSION QUESTIONS: What are the common themes among consumer experiences? How are consumer experiences similar/different to the experiences of people diagnosed with a mental illness on the panel? MATERIALS REQUIRED: Consumer Quotes handout APPROXIMATE TIME REQUIRED: 15 minutes Module 1 The Personal Experience of Seclusion and Restraint 20 PRESENTATION Exercise/Discussion—Module 1 Roadmap to Seclusion and Restraint Free Mental Health Services Personal Perspective: Direct Care Staff OBJECTIVE: To give an opportunity for participants to discuss direct care staff experiences and feelings around the practice of seclusion and restraint. PROCESS: Groups of no more than 6 participants each. Distribute the handout Direct Care Staff Quotes. Have each group facilitate a discussion about the quotes. Are their personal experiences similar or different to those of the people quoted? Why or why not? DISCUSSION QUESTIONS: What are the common themes among direct care staff experiences? How are direct care staff experiences similar or different to the experiences of people who were on the consumer panel? MATERIALS REQUIRED: Direct Care Staff Quotes handout APPROXIMATE TIME REQUIRED: 20 minutes Module 1 The Personal Experience of Seclusion and Restraint 21 PRESENTATION Exercise/Discussion—Module 1 Roadmap to Seclusion and Restraint Free Mental Health Services Preventing, Reducing, and Eliminating Seclusion and Restraint with Special Needs Populations Participants in the August 2000 meeting hosted by the National Association of State Mental Health Program Directors (NASMHPD) Medical Directors Council focused on five special needs populations: (1) children and adolescents; (2) older individuals; (3) individuals with mental illness and a co-occurring disorder of mental retardation and/or developmental disability; (4) individuals with co-occurring mental illness and substance abuse or dependence; and (5) individuals being served in forensic programs. These populations offer valuable lessons for achieving NASMHPD’s goal of preventing, reducing, and eliminating seclusion and restraint. Children and adolescents teach us that seclusion and restraint decisions must take into account the child’s physical and cognitive development, rather than just his or her chronological age. Older individuals may be fragile and present with complex medical, psychological, and physical conditions best served from a multidisciplinary perspective (e.g., physicians, nurses, pharmacists). Individuals with co-occurring disorders of mental illness and mental retardation and/or developmental disability often communicate by means of behavior which must be assessed in context when considering the use of seclusion or restraint. Individuals with co-occurring disorders of mental illness and substance abuse or dependence must be assessed to determine their capacity for exercising self-control and taking personal responsibility in weighing the use of seclusion and restraint. Treatment of individuals in forensic psychiatric programs must balance public safety against therapeutic issues in the use of seclusion and restraint. Many issues and recommendations identified in this report apply equally to all special needs populations, while others may apply only to one or more, but not all. Children and Adolescents Findings Treatment settings for children and adolescents are diverse. More children are served in residential and group treatment programs than in State hospitals or other inpatient settings. Others receive mental health services in detention centers and secure facilities for those adjudicated delinquent. Standards of the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) and Health Care Financing Administration (HCFA) regarding seclusion and restraint apply to hospitals, including State psychiatric hospitals, serving children and adolescents. In addition, HCFA has developed regulations to address the use of seclusion and restraint in child and adolescent residential settings. Promising practices to reduce and eliminate seclusion and restraint may differ between hospital and residential settings. Page 1 of 4 Module 1 Reducing the Use of Seclusion and Restraint Handout 22 HANDOUT Reducing the Use of Seclusion and Restraint: Part II Findings, Principles, and Recommendations for Special Needs Populations Roadmap to Seclusion and Restraint Free Mental Health Services Special Needs Populations (continued) Staff of child and adolescent programs are at risk, in an especially immediate way, of confusing their own childhood experiences and child-rearing practices in their own families with their duties as professionals to the children they serve. Training and supervision that recognizes and addresses these tensions are important for maintaining clear professional boundaries. Recommendations • Families, custodians, and/or guardians should be informed of a program’s seclusion and restraint policies and procedures when their children are admitted. Programs should provide timely notification to these parties if their children are secluded or restrained and give them an opportunity to participate in debriefing each event. • Mental health programs should develop standardized assessment protocols to identify children who have experienced physical, psychological, or sexual trauma, including abuse, and those at high risk for seclusion and restraint events for any reason. Physical and psychological risk assessments should be completed within 24 hours of admission, and before any seclusion or restraint is used. • Assessment should include a review of the child’s medical condition and disability, if any. Substance abuse or dependence should be evaluated in the assessment process for individuals of all ages. • Initial treatment plans should include positive interventions to avoid the use of seclusion and restraint, especially for children most likely to lose self-control. • In the event a child is restrained, he or she must be continually observed to prevent physical harm. These observations should be included in debriefing the event with the child and with staff. • Children who have experienced seclusion and restraint and who can articulate the effects of these experiences should be involved in shaping program policies and procedures and in training staff. • Child and adolescent programs should involve consumers, families, and other advocates to improve all treatment services, and specifically to reduce and eliminate seclusion and restraint. • Many State mental health agencies currently do not have Offices of Consumer Affairs specifically for child and adolescent treatment services. States should be encouraged to develop or support specialized advocacy programs for children and adolescents. Page 2 of 4 Module 1 Reducing the Use of Seclusion and Restraint Handout 23 HANDOUT Seclusion and restraint decisions for children and adolescents must be made using a developmental model, and not be based solely on chronological age. Such decisions must take into account children’s physical, cognitive, and developmental age. For example, in any use of seclusion and restraint, program staff must take special care to avoid damaging the formative growth plates in children’s long bones. Children’s level of cognitive development governs the accuracy of their understanding of social interactions and situations. Children’s sexual development also must be considered so as to avoid or minimize trauma when staff respond to crisis situations. Roadmap to Seclusion and Restraint Free Mental Health Services Special Needs Populations (continued) Aging may cause changes in the ability to communicate, some obvious, others subtle. Dementia and delirium may profoundly compound loss of thinking and speaking ability. The effects of depression may be less dramatic, but may also seriously impair the ability to communicate. An individual unable to communicate will be more likely to experience seclusion and restraint. Aging may lead to sensory impairments, incontinence, falls, and cognitive disabilities. Older individuals affected by degenerative brain disease may be unusually loud, may become combative when approached or touched, or may intrude upon others. In addition, older individuals served in combined, general adult mental health programs may be vulnerable to stronger, more aggressive younger individuals. The design of treatment spaces should contribute to safety and support. Cultural and generational factors of staff and the individuals served may determine if and how programs use seclusion and restraint. Family dynamics also play a role in how older individuals are treated in mental health programs. Some research indicates that seclusion and restraint events with older individuals increase following family visits. Adult children who place elderly parents in treatment may react with grief or guilt and those placed may feel anger toward their adult children for being placed in unfamiliar situations. Recommendations • Individuals, families, custodians, or guardians should be informed of program policies and procedures for use of seclusion and restraint at the time older individuals are admitted. Programs should provide these parties timely notification and an opportunity to participate in debriefing sessions if their relatives or wards are secluded or restrained. • A biological/psychological assessment should be conducted within 24 hours of an individual’s being admitted to a mental health program. The assessment should pay special attention to the individual’s medical condition and unusual fragility (e.g., possible swallowing difficulties). Restraints or PRN medications should not be administered until assessment is completed. Page 3 of 4 Module 1 The Personal Experience of Seclusion and Restraint 24 HANDOUT Older Individuals Findings Geriatric mental health is defined as specialized services for individuals 65 years old or older; this definition is found both in law and Federal and State funding decisions. However, age is not necessarily proportionally related to an individual’s functional status and the kinds of interventions that may be therapeutic. Despite this, an older individual’s functional level is often not a large factor in determining services or settings. Older individuals may present multiple, complex diagnostic issues, including medical, psychological, and physical needs calling for attention by a multidisciplinary team of physicians, nurses, and pharmacists. Roadmap to Seclusion and Restraint Free Mental Health Services Special Needs Populations (continued) Children and Adolescents • Mental health programs for children and adolescents appear qualitatively different from other mental health settings. How is physical contact with children and adolescents distinguished from restraint? Can contact to prompt, guide, or console a child be clearly distinguished from restraint? Can “time-out” in the child’s room be defined and practiced so as not to constitute seclusion? • Children and adolescents, as well as others, rely on learned behavior to cope with difficult situations. If children learn early to rely on seclusion and restraint imposed by others to help control their behavior, can they later learn other less restrictive and coercive means of regaining control? Can critical components of developmentally acceptable seclusion and restraint be identified and provided in staff training? Source: National Association of State Mental Health Program Directors. (2001). Reducing the use of seclusion and restraint. Part II: Findings, principles, and recommendations for special needs populations. Alexandria, VA: National Technical Assistance Center. Page 4 of 4 Module 1 The Personal Experience of Seclusion and Restraint 25 HANDOUT • Staff should be trained to recognize and treat chronic and acute diseases, to understand the dynamics of control issues, and the effect of these issues on interactions with older individuals. Staff training should not be compromised by high employee turnover rates. • Physicians and nurses should consult with qualified pharmacists to assess the effects medications may have on individuals (e.g., gait problems, incontinence), including the use of PRNs, psychotropic medications, and polypharmacy considerations. • An older individual should never be restrained on his or her back due to risk of choking on aspirated material. • Only soft restraints should be used with older individuals. Leather restraints should never be used as these may cause lesions or fractures, especially in cases of osteoporosis. • Programs should encourage individuals and families to use advance mental health directives when feasible. Advance directives spell out treatment preferences and may include alternatives to seclusion and restraint that individuals believe are safer, more effective, and humane. • Many States have ombudsmen for older individuals. Mental health programs should be open to working with older consumers, ombudsmen, and other advocates, particularly to reduce and eliminate seclusion and restraint. Roadmap to Seclusion and Restraint Free Mental Health Services A Nationwide Pattern of Death By ERIC M. WEISS With reporting by Dave Altimari, Dwight F. Blint and Kathleen Megan This story ran in The Courant on October 11, 1998 R oshelle Clayborne pleaded for her life. Slammed face-down on the floor, Clayborne’s arms were yanked across her chest, her wrists gripped from behind by a mental health aide. I can’t breathe, the 16-year-old gasped. Her last words were ignored. A syringe delivered 50 milligrams of Thorazine into her body and, with eight staffers watching, Clayborne became, suddenly, still. Blood trickled from the corner of her mouth as she lost control of her bodily functions. Her limp body was rolled into a blanket and dumped in an 8-by-10-foot room used to seclude dangerous patients at the Laurel Ridge Residential Treatment Center in San Antonio, Texas. The door clicked behind her. No one watched her die. But Roshelle Clayborne is not alone. Across the country, hundreds of patients have died after being restrained in psychiatric and mental retardation facilities, many of them in strikingly similar circumstances, a Courant investigation has found. They died pinned down on the floor by hospital aides until the breath of life was crushed from their lungs. They died strapped to beds and chairs with thick leather belts, ignored until they strangled or their hearts gave out. Those who died were disproportionately young. They entered our health care system as troubled children. They left in coffins. All of them died at the hands of those who are supposed to protect, in places intended to give sanctuary. If Roshelle Clayborne’s death last summer was not an isolated incident, neither were the recent deaths of Connecticut’s Andrew McClain or Robert Rollins. A 50-state survey by The Courant, the first of its kind ever conducted, has confirmed 142 deaths during or shortly after restraint or seclusion in the past decade. The survey focused on mental health and mental retardation facilities and group homes nationwide. But because many of these cases go unreported, the actual number of deaths during or after restraint is many times higher. Between 50 and 150 such deaths occur every year across the country, according to a statistical estimate commissioned by The Courant and conducted by a research specialist at the Harvard Center for Risk Analysis. That’s one to three deaths every week, 500 to 1,500 in the past decade, the study shows. “It’s going on all around the country,” said Page 1 of 5 Module 1 The Personal Experience of Seclusion and Restraint 26 HANDOUT Deadly Restraint — Day One A Hartford Courant Investigative Report Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day One (continued) The regulators don’t ask, and the hospitals don’t tell. As more patients with mental disabilities are moved from public institutions into smaller, mostly private facilities, the need for stronger oversight and uniform standards is greater than ever. “Patients increasingly are not in hospitals but in contract facilities where no one has the vaguest idea of what is going on,” said Dr. E. Fuller Torrey, a nationally prominent psychiatrist, author and critic of the mental health care system. Because nobody is tracking these tragedies, many restraint-related deaths go unreported not only to the government, but sometimes to the families themselves. “There is always some reticence on reporting problems because of the litigious nature of society,” acknowledged Dr. Donald M. Nielsen, a senior vice president of the American Hospital Association. “I think the question is not one of reporting, but making sure there are systems in place to prevent these deaths.” Typically, though, hospitals dismiss restraint-related deaths as unfortunate flukes, not as a systemic issue. After all, they say, these patients are troubled, ill and sometimes violent. The facility where Roshelle Clayborne died insists her death had nothing to do with the restraint. Officials there say it was a heart condition that killed the 16-year-old on Aug. 18, 1997. Bexar County Medical Examiner Vincent DiMaio ruled that Clayborne died of natural causes, saying that restraint use was a separate “clinical issue.” But that, too, is Page 2 of 5 Module 1 The Personal Experience of Seclusion and Restraint 27 HANDOUT Dr. Jack Zusman, a psychiatrist and author of a book on restraint policy. The nationwide trail of death leads from a 6-year-old boy in California to a 45-year-old mother of four in Utah, from a private treatment center in the deserts of Arizona to a public psychiatric hospital in the pastures of Wisconsin. In some cases, patients died in ways and for reasons that defy common sense: a towel wrapped around the mouth of a 16-yearold boy; a 15-year-old girl wrestled to the ground after she wouldn’t give up a family photograph. Many of the actions would land a parent in jail, yet staffers and facilities were rarely punished. “I raised my child for 17 years and I never had to restrain her, so I don’t know what gave them the right to do it,” said Barbara Young, whose daughter Kelly died in the Brisbane Child Treatment Center in New Jersey. The pattern revealed by The Courant has gone either unobserved or willfully ignored by regulators, by health officials, by the legal system. The Federal government—which closely monitors the size of eggs—does not collect data on how many patients are killed by a procedure that is used every day in psychiatric and mental retardation facilities across the country. Neither do State regulators, academics or accreditation agencies. “Right now we don’t have those numbers,” said Ken August of the California Department of Health Services, “and we don’t have a way to get at them.” Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day One (continued) Yet the great tragedy is that many of the deaths could have been prevented by setting standards that are neither costly nor difficult: better training in restraint use; constant or frequent monitoring of patients in restraints; the banning of dangerous techniques such as face-down floor holds; CPR training for all direct-care workers. “When you look at the statistics and realize there’s a pattern, you need to start finding out why,” said Dr. Rod Munoz, president of the American Psychiatric Association, when told of The Courant’s findings. “We have to take action.” Mental health providers, who treat more than 9 million patients a year at an annual cost of more than $30 billion, judge themselves by the humanity of their care. So the misuse of restraints—and the contributing factors, such as poor training and staffing— offers a disturbing window into the overall quality of the nation’s mental health system. For their part, health care officials say restraints are used less frequently and more compassionately than ever before. “When it comes to restraints, the public has a picture of medieval things, chains and dungeons,” said Dr. Kenneth Marcus, psychiatrist in chief at Connecticut Valley Hospital in Middletown. “But it really isn’t. Restraints are used to physically stabilize patients, to prevent them from being assaultive or hurting themselves.” But in case after case reviewed by The Courant, court and medical documents show that restraints are still used far too often and for all the wrong reasons: for discipline, for punishment, for the convenience of staff. Page 3 of 5 Module 1 The Personal Experience of Seclusion and Restraint 28 HANDOUT typical in restraint cases. Medical examiners rarely connect the circumstances of the restraint to the physical cause of death, making these cases impossible to track through death certificates. The explanations don’t wash with Clayborne’s grandmother. “I’ll picture her lying on that floor until the day I die,” Charlene Miles said. “Roshelle had her share of problems, but good God, no one deserves to die like that.” With nobody tracking, nobody telling, nobody watching, the same deadly errors are allowed to occur again and again. Of the 142 restraint-related deaths confirmed by The Courant’s investigation: Twenty-three people died after being restrained in face-down floor holds. Another 20 died after they were tied up in leather wrist and ankle cuffs or vests, and ignored for hours. Causes of death could be confirmed in 125 cases. Of those patients, 33 percent died of asphyxia, another 26 percent died of cardiacrelated causes. Ages could be confirmed in 114 cases. More than 26 percent of those were children—nearly twice the proportion they constitute in mental health institutions. Many of the victims were so mentally or physically impaired they could not fend for themselves. Others had to be restrained after they erupted violently, without warning and for little reason. Caring for these patients is a difficult and dangerous job, even for the best-trained workers. Staffers can suddenly find themselves the target of a thrown chair, a punch, a bite from an HIV-positive patient. Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day One (continued) After she was restrained, Roshelle Clayborne lay in her own waste and vomit for five minutes before anyone noticed she hadn’t moved. Three staffers tried in vain to find a pulse. Two went looking for a ventilation mask and oxygen bag, emergency equipment they never found. During all this time, no one started CPR. “It wouldn’t have worked anyway,” Vanessa Lewis, the licensed vocational nurse on duty, later declared to State regulators. By the time a registered nurse arrived and began CPR, it was too late. Clayborne never revived. In their final report on Clayborne’s death, Texas State regulators cited Laurel Ridge for five serious violations and found staff failed to protect her health and safety during the restraint. They recommended Laurel Ridge be closed. Instead, the State placed Laurel Ridge on a one-year probation in February and the center remains open for business. In a prepared statement, Laurel Ridge said it has complied with the State’s concerns—and it pointed out the difficulty in treating someone with Clayborne’s background. “Roshelle Clayborne, a ward of the State, had a very troubled and extensive psychiatric history, which is why Laurel Ridge was chosen to treat her,” the statement said. “Roshelle’s death was a tragic event and we empathize with the family.” With no criminal prosecution and little regulatory action, the Clayborne family is now suing in civil court. The Austin chapter of the NAACP and the private watchdog group Citizens Human Rights Commission of Texas are asking for a Federal civil rights Page 4 of 5 Module 1 The Personal Experience of Seclusion and Restraint 29 HANDOUT “As a nation we get all up in arms reading about human rights issues on the other side of the world, but there are some basic human rights issues that need attention right here at our back door,” said Jean Allen, the adoptive mother of Tristan Sovern, a North Carolina teen who died after aides wrapped a towel and bed sheet around his head. Others have a simple explanation for the lack of attention paid to deaths in mental health facilities. “These are the most devalued, disenfranchised people that you can imagine,” said Ron Honberg, director of legal affairs for the National Alliance of the Mentally Ill. “They are so out of sight, so out of mind, so devoid of rights, really. Who cares about them anyway?” Few seemed to care much about Roshelle Clayborne at Laurel Ridge, where she was known as a “hell raiser.” But Clayborne had made one close friendship—with her roommate, Lisa Allen. Allen remembers showing Clayborne how to throw a football during afternoon recess on that summer afternoon in 1997. “She just couldn’t seem to get it right and she was getting more and more frustrated. But I told her it was OK, we’d try again tomorrow,” said Allen, who has since rejoined her family in Indiana. Within three hours, Clayborne was dead. She had attacked staff members with pencils. And staffers had a routine for hell raisers. “This is the way we do it with Roshelle,” a worker later told State regulators. “Boom, boom, boom: [medications] and restraints and seclusion.” Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day One (continued) The same aide had pinned her arms across her chest. Thorazine was pumped into her system. She was deposited in the seclusion room. “It felt like my lungs were being squished together,” Allen said. But Lisa Allen was one of the lucky ones. She survived. Additional research was contributed by Sandy Mehlhorn, Jerry LePore and John Springer Copyright © 1998 The Hartford Courant Co. Page 5 of 5 Module 1 The Personal Experience of Seclusion and Restraint 30 HANDOUT investigation into the death of Clayborne. Medications and restraint and seclusion. Clayborne’s friend, Lisa Allen, knew the routine well, too. For six years, Allen, now 18, lived in mental health facilities in Indiana and Texas, where her explosive personality would often boil over and land her in trouble. By her own estimate, Allen was restrained “thousands” of times and she bears the scars to prove it: a mark on her knee from a rug burn when she was restrained on a carpet; the loss of part of a birthmark on her forehead when she was slammed against a concrete wall. Exactly two weeks after Roshelle Clayborne’s death, Lisa Allen found herself in the same position as her friend. Roadmap to Seclusion and Restraint Free Mental Health Services Little Training, Few Standards, Poor Staffing Put Lives at Risk By KATHLEEN MEGAN and DWIGHT F. BLINT With reporting by Dave Altimari This story ran in The Courant on October 12, 1998 S he was a 15-year-old patient, alone in a new and frightening place, clutching a comforting picture from home. He was a 200-pound mental health aide bent on enforcing the rules, and the rules said no pictures. She defied him; the dispute escalated. And for that, Edith Campos died. She was crushed face down on the floor in a “therapeutic hold” applied by a man twice her size. Shy and well-behaved as a girl growing up in Southern California, Edith had problems as a teen. She ran away, took drugs, hung with the wrong crowd. Her family hoped treatment at the Desert Hills psychiatric center in Tucson, Ariz., would help. But Edith Campos died—as did Andrew McClain and Roshelle Clayborne and countless others—when a trivial transgression spiraled into violence. Too often, it’s a reaction built right into our system that cares for people with psychiatric problems and mental retardation. The people who make and execute the critical decisions to use physical force or strap a patient to a bed or chair are often aides, the leasttrained and lowest-paid workers in the field. They must make instantaneous decisions affecting patients’ physical and psychological well-being against a backdrop of staffing cuts that result more in crowd control than in patient therapy. “I can’t understand why patients don’t die more often with all the things that happen on a daily basis,” said Wesley B. Crenshaw, a psychologist who has conducted one of the few national surveys on restraint use. “You have people who are ‘cowboying’ it,” Crenshaw said, “people who really want to get in there and show they’re the boss.” Yet only three States-- California, Colorado and Kansas—actively license aides in psychiatric facilities. Licensing of aides is nearly non-existent in the mental retardation field as well, although a handful of States do certify aides. So, while individual States and facilities may set their own standards, there is no uniform, minimum training for psychiatric or mental retardation aides nationwide—even in life-saving techniques such as CPR. In the Edith Campos case, aide Daniel Thomas Walsh successfully fought negligent homicide charges by arguing he had followed Page 1 of 5 Module 1 The Personal Experience of Seclusion and Restraint 31 HANDOUT Deadly Restraint — Day Two A Hartford Courant Investigative Report Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day Two (continued) Yet children are both a vulnerable and challenging population. Firm diagnoses often cannot be made until late adolescence or early adulthood, so providers are less sure how to treat children. And many troubled children enter the mental health system with histories of physical or sexual abuse—so even the threat of physical force can be traumatizing. For their part, many patients say improper or frequent use of restraints hurts their recovery and defeats the very reason they were admitted. In interviews with more than a dozen children and adults, The Courant’s investigation found these patients were left confused, angry and afraid. They rarely felt better. Researchers are finding the same. In a 1994 New York study, 94 percent of patients restrained or placed in seclusion had at least one complaint about the process. Half complained of unnecessary force, 40 percent cited psychological abuse. In a study published this year, Mohr interviewed children after their hospital stays and found many were further traumatized when they were restrained or secluded—or even watching others undergo the procedure. Usually, she found, children saw such treatment as punishment. The leader of the nation’s psychiatric association acknowledged the problem. “It must be especially frightening for a child,” said Dr. Rod Munoz, president of the American Psychiatric Association. “It’s a struggle of wills where the most powerful win.” And troubled children are the ones who lose. Page 2 of 5 Module 1 The Personal Experience of Seclusion and Restraint 32 HANDOUT hospital guidelines. And the guidelines didn’t say he needed to watch Edith’s face for signs of distress, the judge found. “It was a tragedy that this girl died in our care,” said Kirke Cooper, director of business development for Desert Hills. “But I don’t feel there was any wrongdoing on the part of our staff. They are all welltrained in physical control and seclusion.” Done correctly, a restraint can protect a patient and worker from harm. Done under the right circumstances, patients say, it can be beneficial. Yet too often, it is done badly and for the wrong reasons. Nowhere is this tragedy more apparent than in the deaths of children. A Courant investigation has found more than 26 percent of restraint-related deaths over the past decade involved patients 17 and under. Yet children make up less than 15 percent of the population in psychiatric and mental retardation facilities, according to federal statistics. The death rate should come as no surprise. “You can’t believe how many times a kid gets slammed into restraints because an argument will ensue after calling a staff member a name,” said Wanda Mohr, director of psychiatric mental health nursing at the University of Pennsylvania. She and other analysts say children disproportionately bear the brunt of the misuse and overuse of restraints. A 1995 New York study, for instance, found children almost twice as likely as adults to be restrained. “It’s socially acceptable to spank and punish children,” said Mohr, reflecting the responses of other experts who say our culture tolerates a physical response to unruly children. Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day Two (continued) control and ought to exercise their authority.” Yet in certain facilities, physicians give staffers virtual carte blanche by issuing an order to restrain as needed. “It’s a go-ahead to slap restraints on a person without evaluating why the patient was acting up in the first place,” said Dr. Moira Dolan, a medical consultant in Texas, where standing restraint orders are allowed in certain facilities. “There’s no guidance on when to restrain someone.” Despite such responsibility, minimum hiring standards are few and pay is typically low for aides. A survey by The Courant last spring, for example, found aides were paid as little as $10 per hour in Connecticut. When federal investigators began looking into the quality of care at Western State Hospital in Staunton, Va., last summer they found the $15,000 starting pay was less than what an employee could make at the nearby department store. “When you can make $10 an hour working at the new Target,” asked union representative Allen Layman, “what incentive is there to come here?” Especially when the work can be demanding and dangerous. For every 100 mental health aides, 26 injuries were reported in a three-state survey done in 1996. The injury rate was higher than what was found among workers in the lumber, construction and mining industries. “Depending on the situation, it’s scary, it’s violent,” said David Lucier, a veteran mental health worker at Natchaug Hospital in Mansfield, Conn. “Oftentimes, patients are kicking and punching and spitting and verbally abusive.” Over a 19-year career, Lucier said, he has developed communication skills that allow Page 3 of 5 Module 1 The Personal Experience of Seclusion and Restraint 33 HANDOUT Elaina Huckin, 17, of Granby, Conn., is still so disturbed by a restraint five years ago that she can barely speak about it. She was put in a “body bag,” a sort of neck-totoe straitjacket. “They tie you in it. They pull it tighter and tighter. I couldn’t move to breathe,” Huckin said. “I was screaming and pleading, ‘Somebody, please, somebody take me out.’ “It made you so much more suicidal,” she said. As mental health aides take this step that can do such physical and psychological harm, they are poorly monitored much of the time. Although most institutions require a supervisor to oversee a physical restraint, The Courant found such rules are often ignored. When 11-year-old Andrew McClain was restrained last March at Elmcrest psychiatric hospital in Portland, Conn., the duty nurse sat nearby eating breakfast. She ignored the initial cries of distress from Andrew, whose chest was crushed during the restraint. The decision to strap a patient to a bed or chair, or cuff their hands, must be cleared by a doctor, according to many hospital and State policies. If a doctor is not available, efforts must be made to contact one as soon as possible. But in more than a dozen cases reviewed by The Courant, patients were tied to their bed or chair for several hours at a time without regular review by a physician. Mental health advocates say doctors must keep a closer eye on how long their patients are restrained. “The ultimate responsibility falls to the doctors, who are supposedly the kings in these places,” said Curtis L. Decker, executive director of an organization representing patient advocates nationwide. “They’re in Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day Two (continued) institutions, they end up with only two people doing the work of four people,” said Tom Gallagher of the Indiana Protection & Advocacy Services office. “That’s when problems occur.” At least six of 23 recent deaths reviewed in depth by The Courant occurred during a restraint executed by only one or two people. Another six patients died in seclusion or mechanical restraints after being left, unmonitored, for several minutes or more. “Hospitals have cut their staffing to a bare minimum,” said Dr. David Fassler, a psychiatrist, author and chairman of the Council on Children, Adolescents and Their Families. The same fiscal pressures, he said, have led institutions to reduce training as well. All this at a time when patients particularly need skilled help. As managed care limits access to hospitals, most analysts say patients are entering the system in more troubled conditions than ever before. In the wards, staffers feel the pressure. Pausing during a recent double shift at Western State Hospital in Virginia, a 375-bed facility for adults, nurse Judy Cook talked about the need to devote time to patients. “Every time we’ve had a downsizing of staff we’ve had an increase in restraints and seclusions,” said Cook, who has seen 23 years of trends at Western. “When you have more staff you can intercede better and you don’t have to just place someone in restraints to calm them down.” But reducing the use of restraints requires a financial and philosophical commitment—a commitment to use force only as a last resort, and only by well-trained staff who care about the patient. Page 4 of 5 Module 1 The Personal Experience of Seclusion and Restraint 34 HANDOUT him to rarely touch patients. The skills described by Lucier are gained by training and by understanding the patients. At some hospitals, though, staff are moved about like pawns in a chess game, leaving them little chance to know their patients. To fill less-desirable shifts such as weekends, institutions use less-trained, part-time workers. When faced with wide fluctuations in the numbers of patients, they resort to shuffling workers from one unit to another. A staff shortage landed aide Spero Parasco on Andrew McClain’s unit March 22. Parasco, who usually worked with adults, had never met Andrew before that morning at breakfast and had not read the child’s medical chart. Indeed, Andrew’s ward that Sunday was staffed largely with part-time workers. So when Andrew defied Parasco’s instructions to move to another table at breakfast, the dispute escalated into a “power struggle.” Had workers known more about Andrew, had Parasco been better-versed in ways to calm him, the boy would not have died, a State investigation concluded. Better staffing also reduces the risk of a restraint, like the face-down floor hold in which Andrew died. The American Psychiatric Association recommends at least five people—one for each limb, plus someone to watch—be involved in any physical restraint. That would have been nearly impossible in Andrew’s case. A total of five staffers were on duty in the unit that Sunday morning, overseeing 26 children. As it was, just two aides were involved in Andrew’s restraint. “A takedown requires four staff members and, with staff cuts being made at many Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day Two (continued) HANDOUT Across the nation, the commitment is too often absent. Last summer, a staff shortage at Western State forced nurses to call on security guards to help perform restraints. One guard, who didn’t want his name used, showed little interest in the patients he might forcibly restrain. Or much interest in doing it correctly. “I didn’t get hired,” he said, “for all this bull-crap interacting with people or tackling psychotic patients.” Courant Staff Writer Eric M. Weiss contributed to this story. Copyright © 1998 The Hartford Courant Co. Page 5 of 5 Module 1 The Personal Experience of Seclusion and Restraint 35 Roadmap to Seclusion and Restraint Free Mental Health Services Patients Suffer in a System Without Oversight By ERIC M. WEISS and DAVE ALTIMARI This story ran in The Courant on October 13, 1998 H ad Gloria Huntley been able to move, had she not been bound to her bed with leather straps for days on end, perhaps she would have tried to draw the attention of the inspectors who were conducting a three-day tour of Central State Hospital. Had she been able to move, had she not been pinned down by the wrists and ankles, she might have held up a sign, as she had done before when a visitor came through Ward 7. Her handwritten plea was simple: “Pray for me. I’m dying.” But the inspection team from the nation’s leading accreditation agency never noticed Gloria Huntley before leaving the Petersburg, Va., psychiatric hospital. The three inspectors from the Joint Commission on the Accreditation of Healthcare Organizations issued Central State a glowing report card—92 out of 100 points. They also bestowed the commission’s highest ranking for patients’ rights and care when they concluded their review on June 28, 1996. The next day, Gloria Huntley died. She was 31. Her heart, fatally weakened by the constant use of restraints, had inflamed to 1 1/2 times its normal size. In her last two months, she’d been restrained 558 hours—the equivalent of 23 full days. Nine months later, the Joint Commission gave Central State an even better score in a follow-up review—even though Huntley’s treatment would ultimately be labeled “inhumane” by the Commonwealth of Virginia and condemned by the U.S. Justice Department. “How could JCAHO give Central State the highest rating in human rights when they were killing people?” asked Val Marsh, director of the Virginia Alliance for the Mentally Ill. The way the country’s health care system works, how could it not? The Courant’s nationwide investigation of restraint-related deaths underscores just how faulty—how rife with conflicts of interest, how self-protective, how ultimately ineffective—the system of industry oversight and government regulation really is. The health care industry is left to police itself, but often doesn’t. Time and again, The Courant found, when it comes to the quality and safety of patient care, the interests of the industry far outweigh the public interest. “One reason you have overuse and misuse of restraints is because oversight is practically nonexistent,” said Dr. E. Fuller Torrey, a nationally prominent psychiatrist and author of several books critical of the nation’s mental health system. Page 1 of 4 Module 1 The Personal Experience of Seclusion and Restraint 36 HANDOUT Deadly Restraint — Day Three A Hartford Courant Investigative Report Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day Three (continued) spected were found to have shortcomings that needed to be addressed. “Joint Commission accreditation is intended to say to the patient: This is a place that does things well and is constantly working to improve things,” said Dr. Paul M. Schyve, a psychiatrist and senior vice president of the Joint Commission. If the industry is not adequately watching itself, neither is the government. The nation’s top mental health official says he has little latitude when it comes to tougher regulation and oversight. “Most rules governing health care have been left to the States,” said Dr. Bernard S. Arons, director of the U.S. Center for Mental Health Services. When it comes to mental retardation facilities, in fact, inspection is left largely to the States. But their record is not much better. The General Accounting Office, the investigative arm of Congress, has found that State regulators are loath to punish State-run facilities. In a study of State mental retardation centers, the GAO found “instances in which State surveyors were pressured by officials in their own and in other State agencies to overlook problems or downplay the seriousness of deficient care in large State institutions.” When State regulators do show up, their inspections are scheduled with such predictability that facilities can beef up staff, improve services and even apply fresh coats of paint. Often, only the new paint remains after the inspectors leave. “These visits provide only a snapshot,” said William J. Scanlon, director of health care studies for the GAO. “And it may be a doctored snapshot.” It is only when the system utterly collapses, as in the Gloria Huntley case, that the Page 2 of 4 Module 1 The Personal Experience of Seclusion and Restraint 37 HANDOUT “And the health industry doesn’t want oversight.” The chain of agencies, boards and advocates that is supposed to provide oversight—the kind of oversight that might have prevented Huntley’s death and hundreds like it—often breaks down in multiple places. But the heavy reliance on the Joint Commission—an industry group that acts as the nation’s de facto regulator—lies at the core of the problem. The federal government relies on the private nonprofit agency’s seal of approval for a psychiatric hospital’s acceptance into Medicare and Medicaid programs. And 43 States, including Connecticut, accept it as meeting most or all of its licensing requirements. But the Joint Commission doesn’t answer to Congress or the public. It answers to the health care industry. The Joint Commission was founded in 1951 by hospital and medical organizations, whose members still dominate the commission’s board of directors. The commission is funded by the same hospitals it inspects. How tough are its inspections? Of the more than 5,000 general and psychiatric hospitals that the Joint Commission inspected between 1995 and 1997, none lost its accreditation as a result of the agency’s regular inspections. None. When extraordinary circumstances arise— a questionable death, for instance—the Joint Commission may conduct additional inspections. Even then, less than 1 percent of facilities overall lost accreditation. Central State was not among them. Joint Commission officials are the first to say they are not regulators. Participation is voluntary, and 83 percent of hospitals in- Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day Three (continued) Even if the Joint Commission inspectors had missed Huntley in particular, there were other cases at Central State that should have raised red flags. One patient was restrained for 1,727 hours over an eight-month period, yet another for 720 hours over a four-month period, according to a U.S. Justice Department report. So, in many respects, the investigation into Huntley’s death is most remarkable in that it happened at all. When she died on June 29, 1996, the police were never called. It took a hospital employee’s anonymous call to a citizens watchdog group, days after Huntley’s death, to tip off the outside world that she died while being restrained—and not in her sleep as hospital officials told family members. The Courant’s investigation found at least six cases in which facilities, wary of lawsuits and negative publicity, tried to cover up or obscure the circumstances of a restraint-related death. “It’s sort of a secretive thing,” said Dr. Rod Munoz, president of the American Psychiatric Association. “Every hospital tries to protect itself.” “The incentive is to settle with the family, fix it internally and move on,” said Dr. Thomas Garthwaite, deputy undersecretary of health for the U.S. Department of Veterans Affairs. Many States, including Connecticut, have laws that shield discussions among doctors that explore what went wrong. The laws are designed to promote candid discussions, but the solutions often don’t leave the closed hospital conference room. Garthwaite and other experts said hospitals need to share problems and solutions to prevent deadly errors from being repeated. Just a year ago, the Page 3 of 4 Module 1 The Personal Experience of Seclusion and Restraint 38 HANDOUT federal government intervenes to set rules for patient care. Justice Department abuse investigators, who have authority to intercede when civil rights violations are suspected in publicly run facilities, often find these same facilities were recently given clean bills of health by licensing agencies or the Joint Commission. “The use of restraints is clearly a very big problem and a very significant issue in nearly all of the institutions we investigate,” said Robinsue Froehboese, the top abuse investigator at the Justice Department. But with a staff of 22 attorneys, Froehboese’s office can undertake only a handful of major investigations each year. “Nineteenth-century England had a better oversight system than we have now,” said Torrey, describing an English system that used full-time government inspectors to check every psychiatric facility without prior notice. At Central State, the warning signs should have been apparent. But Joint Commission inspectors review just a sampling of patient records—a sampling that may not include problem cases like Gloria Huntley’s. Anyone who did look at Huntley’s records would have known her health was failing—and that heavy use of restraints was a primary reason. Two years before Huntley’s death, a doctor warned officials at Central State that she would die if they didn’t change her restraint plan. “Staff members should watch their conscience, and those in charge must always remember that following physical struggle and emotional strain, the patient may die in restraints,” stated the ominously titled “duty to warn” letter. Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day Three (continued) Advocates say they have too little funding for their broad charge, and are fought every step of the way by hospitals and doctor groups. Scarce money and staffing are used just to secure basic information. “It’s a David and Goliath battle,” said Curtis L. Decker, executive director of the group representing advocacy organizations nationwide. “And Goliath is winning.” Hospitals see no need for drastic change, let alone more government intervention. “Given the speed of government, it is often better to allow the private market to work issues out,” said Nielsen of the AHA. “Joint Commission standards have been revised recently and are continually being improved.” Huntley’s family might take issue with that assessment. They have filed a civil rights lawsuit in federal court seeking $2 million, and a wrongful death lawsuit in State court seeking $450,000. “We knew from the get-go things weren’t right when they told us she died in her sleep,” said Paige Griggs, Huntley’s sister-in-law. “We thought she was being taken care of.” Courant Staff Writers Kathleen Megan and Dwight F. Blint contributed to this story. Copyright © 1998 The Hartford Courant Co. Page 4 of 4 Module 1 The Personal Experience of Seclusion and Restraint 39 HANDOUT VA began a comprehensive system to track all deaths and mistakes. But a plan by the Joint Commission to do the same all across the nation has been stymied so far by the powerful American Hospital Association. The AHA notified the Joint Commission in January that the proposal had created a “firestorm” among its members, who worried that they would have to turn over “self-incriminating” documents. “We’ve tried to make the program workable, so people would not be afraid to report on a voluntary basis,” said Dr. Donald M. Nielsen, a senior vice president of the American Hospital Association. He said the two groups agreed last month on some ground rules regarding the issue. With the industry failing to monitor itself, with government regulators unwilling to challenge the industry, uncovering abuse is left to “protection and advocacy” agencies established by Congress in each State. Despite $22 million in federal funding this year and broad authority to root out and litigate cases of abuse, even some advocates turn a blind eye to investigating deaths. Desperate for help, Gloria Huntley turned to one of these organizations in her last months of life. Not only was her complaint not investigated, but three weeks after her death Huntley was sent a letter saying the advocacy agency was dropping her case because it hadn’t heard from her in 90 days. The letter ends: “It was a pleasure working with you to resolve your complaint. I wish you the best of luck in your future endeavors.” Roadmap to Seclusion and Restraint Free Mental Health Services “People Die and Nothing Is Done” By DAVE ALTIMARI With reporting by Dwight F. Blint and John Springer This story ran in The Courant on October 14, 1998 S heriff Geno D’Angelo remembers the first time staffers at the Broome Developmental Center in Binghamton, N.Y., called his office for help last year. A deer had been killed by a car in front of the center the evening of Nov. 24. The staff wanted it removed. But no one from the State mental health facility had called D’Angelo four months earlier when William Roberts fell to his side, vomited and died after being ALVINA GAUTHIER and her family fought for a thorough investigation of the death of her daughter Sandra Gordon at the Rosewood Terrace Care Center in Salt Lake City in January. After an autopsy, the 45-year-old woman’s death—originally deemed an accident—was ruled a homicide. The State of Utah eventually closed the facility. restrained in a timeout room. “I wonder how many of these deaths occur at that facility or others in this State that [police] never know about,” said D’Angelo, who first learned about the death from a Courant reporter. The Courant’s investigation has found the nation’s legal system falters time and again when it comes to restraint-related deaths. Just as the medical establishment fails to provide the kind of internal oversight that might prevent patients from dying, the legal system offers little hope for justice after they are dead. Law enforcement officials, lawyers and mental health advocates say it isn’t always easy, or appropriate, to place blame on the ill-trained mental health aides who typically execute restraints. But without thorough investigation, the system too often fails to determine whether a death is a tragic accident or an act of criminal negligence. And whatever the circumstances, they say, patients’ families are entitled to answers. Yet the normal investigative process falls apart at each step, The Courant found. Hospital workers cover up or obscure the circumstances of a death. Autopsies are not automatically performed. Police are not routinely summoned. Investigators often defer to the explanations offered by the institutions Page 1 of 4 Module 1 The Personal Experience of Seclusion and Restraint 40 HANDOUT Deadly Restraint — Day Four A Hartford Courant Investigative Report Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day Four (continued) making it hard to prove criminal intent. Others have found staffers reluctant to blow the whistle on colleagues. “Despite the legal and ethical obligations to report and protect patients from abuse, a strong code of silence among direct care staff still exists,” California investigators found last year after an investigation into restraint abuses at Napa State Hospital. Two people have died in restraint-related incidents at Napa State in the past six years. The California report found a system rotting from within. It cited a survey in which two-thirds of psychiatric aides statewide believe there to be a “code of silence.” Workers, the report said, consider themselves victims of a bad and abusive system. In Pennsylvania, Costen intends to propose legislation to put the system, corporations and administrators, on trial—and not simply the low-paid aides who work for them. “We have to make it possible to attack the corporate structure and hold them accountable for criminal actions,” Costen said. His proposal would carry no prison sentence, instead fining corporations or, in the worst cases, putting them out of business. But punishment can only follow investigation. Police and prosecutors typically rely on medical examiners to trigger a criminal case by issuing a homicide ruling. The trigger is infrequently pulled. In 23 recent deaths examined in depth by The Courant, only three were ruled homicides. In the other cases, including the Binghamton death, medical examiners ruled the deaths to be accidental or attributed them to the patient’s existing medical problems. Page 2 of 4 Module 1 The Personal Experience of Seclusion and Restraint 41 HANDOUT involved. “It’s easier to just say it was an accident and forget about it,” said Michael Baden, a former New York State medical examiner who now serves on a State board that investigates deaths in institutions. Thus, few are ever punished. Prosecutors rarely pursue arrests in restraint deaths and, when they do, they typically accept plea bargains to minor charges. “The way the system runs, people die and then nothing is done about it,” said Raul Campos, whose 15-year-old daughter, Edith, died while restrained in a dispute over a photograph. Hers was a rare case in which criminal charges were filed. But an Arizona judge found restraint deaths are such a “rarity” that it would have been unreasonable to expect the aide to notice Edith’s distress. He tossed the case out. Families of dead patients, angry with the lack of accountability in the criminal justice system, then turn to civil court where they face one last obstacle to justice: jurors who must place a monetary worth on people at the bottom rung of society. “The law is not disability-friendly. If you’re disabled or mentally retarded, you don’t have any value,” said Pennsylvania attorney Ron Costen, who represents families in abuse cases. A former prosecutor, Costen is familiar with the flaws of criminal investigations into restraint deaths. Among the common problems he cited: Scenes are not preserved because staff immediately clean up the room where the restraint occurred. Staffers develop a story emphasizing the patient’s existing physical problems. And workers say they were just protecting themselves or others from harm, Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day Four (continued) shy away. “There’s enormous variability from State to State and even county to county on what the district attorney feels is a prosecutable offense,” said Robinsue Froehboese, the U.S. Justice Department’s top abuse investigator. “Unfortunately,” she said, “the jurisdictions that don’t prosecute these cases far outweigh those who do.” Take the case of Melissa Neyman of Tacoma, Wash. Gerald A. Horne, a Pierce County prosecutor, would not pursue charges in Neyman’s death—even though the State attorney general’s office urged criminal prosecution against the owner and a worker at the Judith Young Adult Family Home. Tied to her bed in a makeshift restraint on the night of July 23, 1997, Neyman managed to climb out a window before becoming entangled in the straps. The 19-year-old autistic woman had been dead six hours before workers finally noticed her—hanging from the window about 3 or 4 feet from the ground. “We don’t charge persons who had goodwill and were doing the best job they could,” Horne said. “They didn’t have any intent to hurt anybody.” But the staffer did put Neyman in a restraint without a physician’s permission— a direct violation of Washington State law. The same staffer was not authorized to care for clients, did not check on Neyman for several hours, and lied to investigators about the circumstances of the death, the attorney general’s office found. When prosecutors do press charges or get indictments from grand juries, they rarely follow through and go to trial. More often Page 3 of 4 Module 1 The Personal Experience of Seclusion and Restraint 42 HANDOUT Baden, of New York, said these rulings fail to take into account the full context in which the patient died. “Positional asphyxiation has this very nice ring to it,” said Baden, referring to a common cause of death in restraint cases. “Like maybe somebody did it to themselves instead of their chests being compressed.” Most medical examiners say they struggle with restraint cases, but ultimately cannot issue a homicide ruling if staffers are working within the scope of their jobs. “It’s difficult to say whether a hold put on a person has any role in their death unless it’s clear-cut they were doing the hold wrong,” said Vincent DiMaio, the Texas medical examiner who ruled that Roshelle Clayborne died of natural causes after being restrained in a San Antonio, Texas, facility. Such clarity is nearly impossible. Across the country, The Courant has found, there are no clear, uniform standards on restraint use, and no minimum training standards for staffers. So prosecution is rare, too. “If a medical examiner rules a death accidental or by natural causes, it does make getting a criminal indictment more unlikely than not,” said John Loughrey, a prosecutor in Monmouth County, N.J. In June, Loughrey presented to a grand jury his case against two staffers at the Brisbane Child Treatment Center. Staffers said 17year-old Kelly Young’s hair was hiding her face during a restraint—so they didn’t notice that her lips were turning blue. But the grand jury refused to issue indictments after hearing the death had been ruled accidental. Faced with unfamiliar cases that are difficult to prove, most prosecutors simply Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day Four (continued) In fact, few lawsuits involving restraint victims ever make it before a jury because they are settled quietly and out of court. In the mere handful of jury verdicts over the past two decades, awards typically fell under a half-million dollars, according to legal experts and a national tracking service. When a case does go to trial, families face a final, common hurdle. Take the case of Roshelle Clayborne. “What’s the life of a poor, black, mentally ill girl who has been institutionalized for several years going to mean to a jury?” said Martin Cirkiel, the Texas attorney who represents Clayborne’s family. “I think the answer,” Cirkiel said, “is not much.” Courant Staff Writers Colin Poitras, Kathleen Megan and Eric M. Weiss contributed to this story. Copyright © 1998 The Hartford Courant Co. Page 4 of 4 Module 1 The Personal Experience of Seclusion and Restraint 43 HANDOUT they settle for a plea bargain that calls for no jail time. Kimberlye Montgomery was originally charged with involuntary manslaughter and gross negligence, a felony with a maximum 15-year sentence, in the restraint death of 9-year-old Earl Smith in Detroit in November 1995. Montgomery, a child-care worker at the Methodist Children’s Home Society, sat on Smith and ignored his pleas for air because it was “typical of the ruses used by children to get themselves released from restraints,” she said in a court deposition. Montgomery eventually pleaded guilty to a misdemeanor and received an 18-month suspended sentence and 100 hours of community service. Nancy Diehl, the Wayne County prosecutor who handled the Smith case, said she had little choice because many of the witnesses were other troubled children. “We gave her a great plea because we felt we might have some problems convincing a jury of the original charge,” Diehl said. “It certainly isn’t easy because your witnesses are other young kids who have various problems. That’s why they are in the home.” After navigating the criminal justice system and ending up empty-handed, the Smith family ended where many aggrieved families do—in civil court. Detroit attorney Julie Gibson, who represented the Smiths, said her clients eventually realized it was best to settle the case. Roadmap to Seclusion and Restraint Free Mental Health Services From “Enforcer” to Counselor By ERIC M. WEISS This story ran in The Courant on October 15, 1998 W ill Overton used to be called “The Enforcer.” With 280 pounds of solid Tennessee muscle wrapped around a 6-foot-3 frame, the aide at the Harold W. Jordan Center was called in to help “shuffle” patients— slamming them to the ground face-down if they acted up or disobeyed. And the 30 mentally retarded and mentally ill patients— people accused of murder, rape and other crimes—often disobeyed. “I used to be a bad boy,” said Robert Hall, a short, wiry patient with the energy of a wound rubber band. “I was shuffled about every day.” Not anymore. Behind the Nashville center’s locked gates and razor wire a radical turnaround has occurred in the last year. Shuffling is now forbidden, staff has been increased and given intensive training. Tennessee’s example shows that, with strong leadership, the physical restraint of patients can be minimized—indeed, nearly eliminated—safely and without exorbitant cost. “If we could do it here,” said Frances Washburn, deputy superintendent of Clover Bottom Development Center, which includes the Jordan unit, “it can be done anywhere.” But the routine and frequently dangerous use of restraints persists elsewhere, even though the solutions are often simple and straightforward: better training, stronger oversight, uniform standards and the collection and sharing of information. Federal officials and health groups say they are working on it. The U.S. Center for Mental Health Services has begun a five-state pilot program to collect restraint and seclusion data. The U.S. Department of Veterans Affairs is tracking deaths more closely. The Joint Commission, the nation’s leading hospital accreditation organization, has strengthened its guidelines on restraint and seclusion. And the American Medical Association has begun studying the use of restraints on children. “Those steps sound pretty inadequate to me,” said Dr. Joseph Woolston, medical director for children’s psychiatric services at Yale-New Haven Hospital. “This sort of halfhearted patchwork approach will probably do more harm than good by giving an illusion that something is happening when it is not.” So for now, it is left to individual hospitals to find their own way. Those committed to the task illustrate what can be done. Riverview Hospital for Children and Youth, a State-run psychiatric hospital in Page 1 of 4 Module 1 The Personal Experience of Seclusion and Restraint 44 HANDOUT Deadly Restraint — Day Five A Hartford Courant Investigative Report Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day Five (continued) share more information and learn from the mistakes of others. Techniques found to be dangerous, such as face-down floor holds and mouth coverings, have been outlawed in certain places as a result. But tough lessons learned by individual hospitals typically aren’t shared with facilities on the other side of town or 10 States away. Each hospital is left to reinvent procedures or learn the hard way—through the death of a patient. It doesn’t have to be that way. New York State has reduced restraint use and the number of related deaths by requiring the reporting of usage rates and by investigating all deaths. After New York required all mental health facilities to say how often they use restraints—and published the numbers— the top three users revamped their policies and brought their numbers down. When it came to deaths, the State used to allow each hospital to decide which ones were questionable enough to report. It was notified of 150 cases over three years. Once mandatory reporting of every death was instituted 20 years ago, the number of deaths requiring further investigation rose to 400 a year. “When people have a choice in classifying deaths—with one choice resulting in tremendous scrutiny, the other resulting in none, what do you think they’re going to do?” said Clarence Sundram, the former chairman of the independent New York agency that tracks and investigates deaths. Accountability has produced results. Restraint-related deaths in the past five years have been cut nearly in half as compared with the preceding five years, New York State records show. Nationwide accountability could accomplish the same. Page 2 of 4 Module 1 The Personal Experience of Seclusion and Restraint 45 HANDOUT Middletown, Conn., uses an intensive training program that emphasizes non-physical intervention when a patient loses control. “These situations are often chaotic and unpredictable, and without proper training, staffers are just winging it,” says Linda Steiger, executive director of Wisconsin-based Crisis Prevention Institute. CPI, a leading private training company, provides instruction to Riverview workers. The cost is minimal: $895 per person for a four-day program to teach a small number of designated staffers, who then instruct their peers. Tighter procedures also emphasize that every restraint is a major step—literally, a matter of life and death. At Riverview, a staffer is required to constantly monitor anyone in mechanical restraints. That ensures a patient’s vital signs remain strong, and provides an incentive to end the intervention as soon as the patient regains control. At Tennessee’s Jordan Center, patient treatment plans that include the use of restraint are, for the most part, rejected. And every use of emergency restraint is investigated and must be defended. “When forced to go through the self-analysis and justifications, they solve it at a lower level the next time and without restraints,” said Thomas J. Sullivan, who heads Tennessee’s Division of Mental Retardation Services. “Of course, this requires staff to give up total control.” Emergency restraints are so infrequent now that Sullivan gets an e-mail message every time they are used. He’s gotten an average of just two to three e-mails per month since January. Accountability means staffers Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day Five (continued) More than money, though, many analysts say a culture in which restraints are used too soon, too frequently and for the wrong reasons must be changed. “The single biggest prevention method is the avoidance of restraints to begin with,” Sundram said. “It is often the training and opinions of staff that dictate restraints, rather than patient behavior.” In Tennessee, “the changes were topdown, bottom-up and a hard sell everywhere,” Sullivan said. Before taking the top Tennessee job, Sullivan spent 27 years as an official in Connecticut’s Department of Mental Retardation. Reducing restraint use was just one of many changes forced on Tennessee by two lawsuits filed by the U.S. Department of Justice and by patient advocates. “It was a system that was disintegrating,” said Ruthie Beckwith of People First of Tennessee, a patient advocacy organization that sued the State. The State responded with new leadership, more money and staff and an intensive training regimen emphasizing calming words instead of brute force. The total cost for the Jordan Center: $12,665 for training in restraint use and alternative methods; $255,372 annually in additional staffing to address not only restraint issues but massive deficiencies in overall patient care. The changes in technique weren’t easy on staff. About a halfdozen aides quit. Others groused. But most stayed and changed. “It was a rough couple of months,” said Robert Zavala, an aide at Jordan. “At first, they just told us we couldn’t put our hands on them. Everyone was like, ‘Oh, so all I can do now is run away?’ “ Page 3 of 4 Module 1 The Personal Experience of Seclusion and Restraint 46 HANDOUT “There needs to be some kind of Stateby-State evaluation to gather comparative statistics and give an annual report to Congress,” said Dr. E. Fuller Torrey, a prominent psychiatrist and author. “Until you embarrass the individual States,” Torrey said, “nothing will be done.” The federal government has shown a willingness to intercede on this very issue—in response to charges that the elderly were being abused. When the U.S. Food and Drug Administration estimated in 1992 that more than 100 people annually were killed through the use of mechanical restraints in nursing homes, the agency tightened rules on their use. “We also thought these cases were flukes,” said the FDA’s Carol Herman, “until we started digging.” The FDA now considers lap and wheelchair belts, fabric body holders and restraint vests to be prescription devices. Manufacturers are subject to FDA inspections to ensure quality control. Such steps, advocates say, have both reduced and improved the use of restraints. In the mental health field, strong and independent government oversight can weed out bad practices and bad facilities as well, they say. “We can’t do it alone,” said Curtis L. Decker of the National Association of Protection and Advocacy Systems. “The only way to truly protect patients is through a large, comprehensive monitoring program.” That means a system where government regulators, not the industry, are charged with oversight, he said. An internal patient grievance system would be bolstered by a well-funded network of independent advocates trained in death investigations. Roadmap to Seclusion and Restraint Free Mental Health Services Deadly Restraint—Day Five (continued) more of a counselor or big brother than an enforcer,” Overton said. Like a Cold War relic, he now uses skills other than just his brawn, such as his woodworking knowledge, which he passes on to patients in a new class he teaches. “I used to get shuffled a whole lot of times when I would go off and hit someone,” said David Holland, 24, who has been at the Jordan Center for 2 1/2 years. “Now, they give us a lot more time to chill out, calm down. It’s getting better each day.” Copyright © 1998 The Hartford Courant Co. Page 4 of 4 Module 1 The Personal Experience of Seclusion and Restraint 47 HANDOUT Bernard Simons, the Clover Bottom superintendent who oversaw the transition, remembers a defining moment. He received a frantic call from staffers at Jordan saying a patient was smashing furniture and asking whether they could restrain him. “I said, ‘Let him break it,’ “ Simons said. “So you’re going to risk hurting yourself or the patient for a $100 coffee table? The State will buy a new one.” The changes are both profound and surprising to staff and patients who remember the old ways. “Before, we weren’t earning their respect, it was just fear,” said Overton, the burly aide who still wears a belt that says “Boss.” “Now, I’m Roadmap to Seclusion and Restraint Free Mental Health Services T he death of 11-year-old Andrew McClain in a Connecticut psychiatric hospital in March prompted a team of Hartford Courant reporters and researchers to investigate the use of restraints and seclusion. The investigation began in May and concluded five months later. The team ultimately pored through thousands of pages of policy reports and academic studies, traveled to 10 States, surveyed federal databases and electronic news archives, and spoke to hundreds of regulators, industry officials, analysts, workers and patients. As its first step, the reporting team conducted a 50-state survey to document deaths that occurred during or shortly after restraint or seclusion. The team concentrated on the period from 1988 to the present. The reporters contacted officials in health care and licensing agencies, child fatality review boards and patient advocates in each State. In most States, many more calls were made to public officials and others. As part of its investigation, the team compiled a database of 142 patient deaths in psychiatric hospitals, psychiatric wards of general hospitals, group homes and residential facilities for troubled youths, and mental retardation centers and group homes. Deaths that were confirmed and fact-checked by Courant researchers were compiled in a database now available on our Internet site at www.courant.com. Throughout the report- ing, though, it became clear that many deaths go unreported. For example, only New York State requires the reporting and investigation of every death in a private or State facility to an independent State agency. New York found that 64 people died during or shortly after restraint or seclusion in targeted institutions from 1988 through 1997. In contrast, only 12 confirmed cases could be uncovered in California in the same period—because the State simply does not collect the data. “I hope [your story] doesn’t reflect that these are the only deaths in California,” said Colette Hughes, the State’s top abuse investigator for a patient advocacy group. “There is no doubt that this is the tip of a huge iceberg.” To better determine the national death rate, The Courant hired statistician Roberta J. Glass. Glass is a research specialist for the Harvard Center for Risk Analysis at the Harvard School of Public Health. She has 14 years’ experience in the field of statistical projections. In her projection, Glass used data from the State of New York, the U.S. Department of Health and Human Services and earlier academic studies on restraint use, among other sources. If facilities throughout the rest of the country used restraints as often as those in New York State, Glass found, there would be 50 deaths annually nationwide. But Glass noted the rest of the country was not necessarily like New York State. New Page 1 of 2 Module 1 The Personal Experience of Seclusion and Restraint 48 HANDOUT How The Courant Conducted Its Investigation Roadmap to Seclusion and Restraint Free Mental Health Services HANDOUT How The Courant Conducted Its Investigation (continued) York monitors restraint use more closely, and facilities in New York use restraints at a lower rate than national surveys have found elsewhere in the country. Thus, Glass projected the annual number of deaths could range as high as 150. “Admittedly, the estimates are only rough approximations,” Glass said. “The data needed for precise estimation are not collected in a systematic way nationwide. “But it is clear that greater attention should be paid to this issue, especially in light of the fact that it affects a particularly vulnerable patient population.” Project reporters: Eric M. Weiss, Dave Altimari, Dwight F. Blint and Kathleen Megan. Additional reporting: John Springer, Colin Poitras and Hilary Waldman. Project researchers: Jerry LePore and Sandy Mehlhorn. Copyright © 1998 The Hartford Courant Co. Page 2 of 2 Module 1 The Personal Experience of Seclusion and Restraint 49 Roadmap to Seclusion and Restraint Free Mental Health Services HOSPITAL CITED IN RESTRAINT MISUSE The Hartford Courant (CT) Author: COLIN POITRAS; Courant Staff Writer February 16, 2002 F ederal inspectors have found that Connecticut’s largest psychiatric hospital has been improperly restraining patients, even after the State led a national movement to restrict such techniques. The findings forced Gov. John G. Rowland last week to propose spending $1.8 million for training and additional staff to prevent the loss of $50 million in federal aid. Staff members at Connecticut Valley Hospital routinely violated patients’ rights by tying them to their beds and placing them in seclusion to control their behavior, inspectors found during tours of the hospital and its Whiting Forensic Division last October. Such measures are supposed to be used only in emergencies when patients pose a serious threat. In one instance, inspectors noted, a potentially dangerous 22-year-old male patient was placed in four-point bed restraint at Whiting for an entire month. Other Whiting patients were placed in mechanical restraints for days and weeks at a time and remained in restraints even while sleeping, according to the inspectors’ report. The inspection was conducted by the U.S. Department of Health and Human Services’ Centers for Medicare and Medicaid Services, formerly known as the federal Health Care Financing Administration. It was the first time that the hospital had undergone such a com- prehensive federal inspection in six years. If the State didn’t take immediate corrective action, the agency warned that it would no longer provide the hospital with millions in Medicare reimbursements. Connecticut Valley Hospital’s chief operating officer, Garrell S. Mullaney, said this week that the hospital has already changed its restraint and seclusion practices and that the $50 million in federal reimbursement is once again ensured. Rowland included $1.8 million to address the issue in his amended budget proposal presented to legislators last week. The money will be used to hire 13 additional staff members, train existing staff in the new rules for restraint and create a special eight-bed housing unit for particularly difficult patients, officials said. But the inspection’s conclusions were potentially embarrassing for the State, whose two U.S. senators—Christopher J. Dodd and Joseph I. Lieberman—sponsored the landmark national legislation that led to tighter controls on the use of restraints in psychiatric hospitals two years ago. Dodd and Lieberman sponsored the bill after an investigation by The Courant documented that 142 people, many of them children, had died in psychiatric facilities throughout the country as a result of improper or excessive restraints. Mullaney said that Connecticut Valley was Page 1 of 2 Module 1 The Personal Experience of Seclusion and Restraint 50 HANDOUT PSYCHIATRIC FACILITY BROKE NEW RULES Roadmap to Seclusion and Restraint Free Mental Health Services Hospital Cited in Restraint Misuse (continued) Instead of placing inmates in seclusion or restraints when they pose a threat, staff is now being training in “de-escalation’’ techniques to help them recognize and address potential problems before they turn serious. The hospital has also started using a “patient preference form’’ that asks patients what they feel will work best to help them calm down when their behavior becomes a concern. In more serious instances in which restraints may have once been used, Mullaney said the hospital now relies on intense patient supervision—one-to-one, two-to-one and sometimes even three-to-one staff observations—to ensure both the patients’ and staff’s safety. Carole Burgess, a forensic treatment specialist at Whiting, said the new requirements for supervision are driving up overtime costs and forcing staff to often work double shifts. “We’re really working hard to keep within the guidelines,’’ Burgess said. “But it’s very demanding to work with people in that way. And when people are understaffed and overtired, it’s very difficult for them to do their best work.’’ Copyright © 2002 The Hartford Courant Co. Page 2 of 2 Module 1 The Personal Experience of Seclusion and Restraint 51 HANDOUT proud of the fact that it had reduced restraint use by about 40 percent in the past two years. Yet he and others were not anticipating the strict interpretation of the new federal guidelines adopted by the inspectors from the Centers for Medicare and Medicaid Services, or CMS, during their unannounced visit on Oct. 4. Mullaney said the national Joint Commission on Accreditation of Healthcare Organizations, as well as State law, allows psychiatric hospitals to use restraints if a patient poses an “imminent’’ threat to himself or others. But the guidelines adopted by CMS permit mechanical restraints only in the most severe situations and require them to be removed as soon as a patient calms down. Any impression that Connecticut Valley is an archaic facility that punishes its patients by placing them in restraints would be wrong, Mullaney said. “This is a very, very progressive facility,’’ Mullaney said. Mullaney said the 22-year-old patient who was restrained to his bed for a month was particularly aggressive and injured 44 staff members over the past year, Mullaney said. Mullaney said the hospital immediately adopted CMS’ interpretation of restraint guidelines after the inspection and is in the process of creating a new behavior management program that complies with federal rules. Inspectors returned to the hospital in late January and found no additional evidence of improprieties, federal authorities said. Roadmap to Seclusion and Restraint Free Mental Health Services Consumer Quotes As an adolescent, age 12, I was put in a psychiatric unit for adolescents. I was there for abuse situations and the duration of my stay I was put into seclusion, which we called the padded room. I was put in there and stripped down, to nothing, and I was forced to stay there for 5 hours because I refused to watch a sexual assault video. Instead of letting me stay in my room and talk to my nurse at that time, they said if I don’t follow the rules this is where I have to go. —Female in seclusion and restraint as an adolescent I think they should talk to you when you want them to talk to you. Basically you are a human being, not an animal. Even an animal being strapped down flat on the floor the Humane Society would have a fit with that. —Male They say act like an adult. If they want me to act like an adult, they should treat me like one. The way I should be treated and the way you would want to be treated. —Female I have been in seclusion about seven times. I’ve had experiences where I’ve had 7 or 8 people take me down and I’ve had experiences where I have had less. It’s very degrading because when they put you there even as a girl or woman, all you’re left is your underwear and a paper gown and a mattress that has nothing on it. —Female Fear basically is a big thing. You’re vulnerable. Seclusion room is sometimes used as a punishment not as a therapy. I don’t think treating someone like an animal is really a therapy. I think a lot of the staff are scared of the patients. And they react to that fear by controlling the patients and not trying to treat the patients. —Male Page 1 of 3 Module 1 The Personal Experience of Seclusion and Restraint 52 HANDOUT The big problem I have with restraints is that you start feeling vulnerable and you start thinking imaginary things like the people are going to hurt you, especially like the staff. Since they are required by law to always chart you, you are always seeing them staring at you through the window while you are lying there like, you know and it’s scary. Very scary. —Male Roadmap to Seclusion and Restraint Free Mental Health Services Consumer Quotes (continued) Then they have these restraints; they really are kind of sadistic in a way. You are spread-eagled so you really can’t move. You can’t have any circulation. You can’t do anything. And they do and when they do it on your stomach lying down, you really can’t even breathe. And the human instinct when you are spread-eagled is to get up so you are constantly fighting these things. —Male I’ve heard about people trying to pull their feet out of restraints and getting hurt. I’ve never tried that, my feet are too big and I was afraid I might lose them. —Male I usually would end up hurting myself more because of what they had done, instead of less. —Female It’s the fear factor. I get paranoid and that’s why I sign myself into a place like that. I get more paranoid while I go through the process cause basically because of my energy level I scare people. I’m not a mean person. I don’t hurt people. I don’t pull wings off flies. I’m a nice guy; I don’t even hunt or fish. I don’t even put worms on hooks; it’s not my thing. But I am very loud and very energetic and it does frighten people. And I am fairly big and that also frightens people. But unless I want to go on a starvation diet and get my vocal chords cut, lose my legs just so they can treat me well at a State hospital when I am paranoid. —Male They said as soon as I stopped being angry, they would let me out. Meanwhile you are naked on your bed, strapped down with your door open and they wondered why you weren’t mellowing out. —Female as an adolescent in restraint and seclusion Seclusion room, same thing with the people viewing you. They are always looking at you with them beady eyes. It’s very frightening; it’s very frightening. —Male Page 2 of 3 Module 1 The Personal Experience of Seclusion and Restraint 53 HANDOUT The only way to survive in there is to turn inward and that just made me more angry. —Female in seclusion and restraint as an adolescent Roadmap to Seclusion and Restraint Free Mental Health Services Consumer Quotes (continued) When you’re like this (head back, arms straight out) you want something to prop your head up. A little kindness. There was nurse that is now a doctor that talked to me once when I was really paranoid. If the staff is paranoid of you, what’s the difference if the patient is paranoid? There are more staff than there are of you. They got you outnumbered and they got the keys. And if they are scared, why can’t I be scared? I mean, isn’t that fair? —Male I know it deepened my fear. I was in there to get help so I wouldn’t injure myself anymore and become a better person. It just made me more angry and didn’t help nothing. —Female in seclusion and restraint as an adolescent You are spread-eagled and on the floor and can’t move. They are much happier. It’s more convenient to restrain a patient or put him in the seclusion room. —Male From interviews with consumers in Minnesota. Page 3 of 3 Module 1 The Personal Experience of Seclusion and Restraint 54 HANDOUT After they unlocked the door and they dragged me in there, they said, well you can’t keep your clothes for danger issues. And they made strip me down. They kept a video on me the whole time. For a girl who is awkward and is in there for issues of abuse at home, all that did was extend my hate. —Female in seclusion and restraint as an adolescent Roadmap to Seclusion and Restraint Free Mental Health Services Direct Care Staff Quotes I feel that it is overused and could be prevented a great deal of the time. I think that we got to train staff to avoid it where it’s at all possible. The first time that I helped with a restraint, a four-point restraint, I walked out of the room in tears because I thought it was one of the most horrible things I had ever seen. A lot of staff are really inflexible as to, I feel like they need to have the last word and then if the kid doesn’t do exactly what they say, where they say, their alternative is that they need to go into seclusion. I’ve had my peers report to me on particular event. I remember she had been monitoring a seclusion and I don’t remember if the patient had cut himself or had a bloody nose or what and had smeared the blood all over and she said, “I smelled that, I smelled that all the time.” The problem I’ve seen through the years in this setting is depending on what staff is working. Sometimes it becomes more of a control issue than an issue of the best outcome or avoiding a seclusion. I’ve been injured from time to time. Bruises, nothing severe. Yeah, sometimes I get headaches. I get shaky. When you get to that point you feel as though you have failed. It seems like you’ve missed something when you could have prevented it beforehand. I never liked doing that (restraints), but it’s about maintaining safety and you just never want that to happen. You feel like you have failed. There’s always something you could have seen earlier if you had been there a little sooner, if you had know the client a little better. You could have prevented the situation. Page 1 of 2 Module 1 The Personal Experience of Seclusion and Restraint 55 HANDOUT One of the things that doesn’t get talked about very much is the trauma of the staff. We talk about the trauma paradigm for our clients or people in recovery. But not very often in my 20 years of work in the field of mental health have I heard much about what happens to us, the workers, and I think that’s an area where we need to do some work. I’ve seen some pretty traumatic things from when I first started 20 years ago. Some of those things still haunt me. Roadmap to Seclusion and Restraint Free Mental Health Services Direct Care Staff Quotes (continued) Often what leads up to that is a manual escort. We frequently ask kids to go to a quiet area to calm down which in not too restrictive, just an area away from the group where they can take time to calm down and get back on track and re-join the activity. However, what I see a lot of the time is a kid will refuse to go to the quiet area or a kid will refuse to go to the quiet room and the staff will think, OK, if I don’t follow up on this the other kids will see they don’t have to listen to me and my authority will be challenged. So what they will do is manually escort them to the quiet room or area. At that point the kids will resist three-fourths of the time. When the kids resist they might end up just struggling and trying to get away and inadvertently bumping or hitting or shoving staff or they might actually bite or kick them or something like that which aggression toward staff is usually a justification for seclusion and they will end up in that seclusion whereas if that hands on escort to the quiet area or quiet room wasn’t initiated that seclusion wouldn’t happen. So that’s my big beef. I know that after a couple of difficult incidents on a unit, I certainly felt like I had symptoms of PTSD, about being hyper-aware when I walked to my car because some of the things I say and that I was involved with were very traumatic. And I think consumers talk about what it is like to be in restraints, it is also traumatizing to put people in restraints in the same way that I think it is traumatizing for soldiers to go to war and kill other people. We don’t often talk about the impact of that either. From interviews with direct care staff in Minnesota. Page 2 of 2 Module 1 The Personal Experience of Seclusion and Restraint 56 HANDOUT I had an altercation in the past week with a patient that left some scratching on my face. The next day I woke up and was sick to my stomach and I couldn’t come back to work. Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 1 - REFERENCES Angold, A. (1989). Seclusion. British Journal of Psychiatry, 154, 437-444. Betemps, E., Buncher, C., & Oden, M. (1992). Length of time spent in seclusion and restraint by patients at 82 VA medical centers. Hospital and Community Psychiatry, 43, 912-914. Betemps, E., Somoza, E., & Buncher. (1993). Hospital characteristics, diagnoses and staff reasons associated with use of seclusion and restraint. Hospital and Community, 44, 367-371. Bond, C.F., DiCandia, C., & MacKinnon, J. (1988). Response to violence in a psychiatric setting. Personality and Social Psychology Bulletin, 44, 448-458. Busch, A.B., & Shore, M.F. (2000) Seclusion and restraint: A review of the literature. Harvard Review of Psychology, 8, 261-270. Campbell, J. (1989). People say I’m crazy. San Francisco: Department of Mental Health. Cooper, W. (1998. November 21) Mentally ill teen girl dies after being restrained. The Palm Beach Post. Craine L.S., Henson, C.E., Colliver, J.A., et al. (1988). Prevalence of a history of sexual abuse among female psychiatric patients in a State hospital system. Hospital and Community Psychiatry, 39, 300-304. Daar, M., & Nelson, T. (1992). Reforming seclusion and restraint practices: An advocacy manual. Sacramento, CA: Protection and Advocacy, Inc. Davidson, L., & Stayner, D. (1997). Loss, loneliness, and the desire for love: Perspectives on the social lives of people with schizophrenia. Psychiatric Rehabilitation Journal, 19(3), 3-12. Fisher, W. (1964). Restraint and seclusion: A review of the literature. American Journal of Psychiatry. 151, 1584-1591. Food and Drug Administration. (1992). Safe use of physical restraint devices. FDA Backgrounder. Rockville, MD: Author. Hersen, M., Ammerman, R.T., & Sisson, L.A. (1994). Handbook of aggressive and destructive behavior in psychiatric patients. New York: Plenum Press. Holzworth, R., & Wills, C. (1999). Nurses’ judgments regarding seclusion and restraint of psychiatric patients: A social judgment analysis. Research in Nursing and Health, 22, 189-201. Leghmann, L.S., et al. (1983). Training for the prevention of assaultive behavior in a psychiatric setting: St. Thomas Hospital. Hospital and Community Psychiatry, 34, 40-43. Martinez, R., Grimm, M., & Adamson, M. (1999). From the other side of the door: Patient views of seclusion. Journal of Psychosocial Nursing, 73(3), 3-22. Massachusetts Department of Mental Health. (1996). Report and recommendations of the task force on the restraint and seclusion of persons who have been physically or sexually abused. Boston: Author. Megan, K., & Blint, D.F., (1998, October 12). Little training, few standards, poor staffing put lives at risk. Hartford Courant. Page 1 of 3 Module 1 The Personal Experience of Seclusion and Restraint 57 HANDOUT Altimari, D. (1998, October 14). People die and nothing is done. Hartford Courant. Roadmap to Seclusion and Restraint Free Mental Health Services Module 1 - References (continued) Milliken, D. (1998). Death by restraint. Canadian Medical Association Journal, 158, 1611-1612. Mohr, W.K. (1999, April 13). Statement of Wanda K. Mohr on behalf of NAMI, the National Alliance for the Mentally Ill, before the Labor, Health and Human Services, and Education Subcommittee, Senate Committee on Appropriations. National Association of Consumer/Survivor Mental Health Administrators. (2000). In Our Own Voices Survey. An unpublished survey. National Association of State Mental Health Program Directors. (1999). Reducing the use of seclusion and restraint: Findings, strategies, and recommendations. Alexandria, VA: National Technical Assistance Center. National Association of State Mental Health Program Directors. (2001). Reducing the use of seclusion and restraint. Part II: Findings, principles, and recommendations for special needs populations. Alexandria, VA: National Technical Assistance Center. National Association of State Mental Health Program Directors. (2002). Managing conflict cooperatively: Making a commitment to nonviolence and recovery in mental health treatment settings. Alexandria, VA. National Technical Assistance Center. Norris, M., & Kennedy, C. (1992). The view from within: How patients perceive the seclusion process. Journal of Psychosocial Nursing and Mental Health Services, 30, 7-13. Nelson, T., Daar, M., & Chandler, D. (1993). Seclusion and restraint practices in eight California counties. Sacramento, CA: Protection and Advocacy, Inc. New York State Office of Mental Health. (1994). Final recommendations on the use of restraint and seclusion. Albany, NY: Author. Poitras, C. (2002, February 16). Hospital cited in restraint misuse: Psychiatric facility broke new rules. Hartford Courant. Ray, N., & Rappaport, M. (1993). Fluctuating odds: Estimating one’s chances of being restrained or secluded in New York’s psychiatric hospitals. Albany: NY State Commission on Quality of Care for the Mentally Disabled. Ray, N.K., Myers, K.J., & Rapport, M.E. (1996). Patient perspectives on restraint and seclusion experiences: A survey of former patients of New York State psychiatric facilities. Psychiatric Rehabilitation Journal 20(1), 11-18. Solof, P.H., Gutheil, T., & Wexler, D. (1985). Seclusion and restraint in 1985: A review and update. Hospital and Community Psychiatry, 36, 652-657. Solof, P.H., McEnvoy, J., Ganguli, R., & Ganguli, M. (1989). Controversies in psychiatry: Is seclusion therapeutic? Psychiatric Annals, 19(1). Walsh, E., & Randell, B. (1995) Seclusion and restraint: What we need to know. Journal of Child and Adolescent Psychiatric Nursing, 8, 28-40. Page 2 of 3 Module 1 The Personal Experience of Seclusion and Restraint 58 HANDOUT Miles, S., & Meyers, R. (1994). Untying the elderly: 1989 to 1993 update. Clinics in Geriatric Medicine, 10, 513-525. Roadmap to Seclusion and Restraint Free Mental Health Services Module 1 - References (continued) Weiss, E.M. (1998, October 15). From “enforcer” to counselor. Hartford Courant. Weiss, E.M. (1998, October 11). Deadly restraint. Hartford Courant. Wheeler, E., Barron, D., & Anthony, S. (1994). Violence in our schools, hospitals, and public places: A prevention and management guide. CA: Pathfinder Publishing. Page 3 of 3 Module 1 The Personal Experience of Seclusion and Restraint 59 HANDOUT Weiss, E.M., & Altimari, D. (1998, October 13). Patients suffer in a system without oversight. Hartford Courant. Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 2 Understanding the Impact of Trauma 1 Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 2 Understanding the Impact of Trauma “What helps me (deal with trauma) is professionals who have the ability to take care of themselves, be centered, and not take on what comes out of me—not hurt by what I say—sit, be calm and centered and not personally take on my issues.” —Survivor from Maine “Traumatic experiences shake the foundations of our beliefs about safety and shatter our assumptions of trust.” —David Baldwin Learning Objectives Upon completion of this module the participant will be able to: • Define trauma and describe how it can impact consumers in mental health settings. • List common reactions to trauma and identify how trauma affects the brain. • Understand how hospitalization/seclusion/restraint can be retraumatizing for consumers. • Incorporate trauma assessment and de-escalation forms into current practices. • Recognize and utilize positive coping mechanisms to deal with secondary traumatization. Module 2 Understanding the Impact of Trauma 2 Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 2: UNDERSTANDING THE IMPACT OF TRAUMA Background for the Facilitators. . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Presentation (3 hours) . . . . . . . . . . . . . . . . . . . . . . . . Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Exercise: Trauma Background (25 minutes) . . . . . . . Definitions Related to Trauma . . . . . . . . . . . . . . . . . . Common Reactions to Trauma . . . . . . . . . . . . . . . . . . Exercise: Common Reactions to Trauma (20 minutes) Effects of Trauma on the Brain . . . . . . . . . . . . . . . . . Differential Response to Threat . . . . . . . . . . . . . . . . . Assessment of Trauma . . . . . . . . . . . . . . . . . . . . . . . Exercise: Assessment of Trauma (20 minutes) . . . . . Retraumatization via Hospitalization . . . . . . . . . . . . . De-Escalation Preferences . . . . . . . . . . . . . . . . . . . . Exercise: De-Escalation Preferences (20 minutes) . . . What Survivors Want in Times of Crisis . . . . . . . . . . . Staff Trauma (Secondary Traumatization) . . . . . . . . . . Healing from Trauma . . . . . . . . . . . . . . . . . . . . . . . . Grounding Techniques . . . . . . . . . . . . . . . . . . . . . . . Exercise: Grounding Techniques (10 minutes) . . . . . . Journal/Take Action Challenge (15 minutes) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Handouts for Participants . . . . . . . . . . . . . . . . . . . . . . . . Journal Topics and Take Action Challenges for . . . . . . . . . Modules 1 and 2 National Association of State Mental Health Program . . . . Directors (NASMHPD) Position Statement on Services and Supports to Trauma Survivors Excerpts from Kate Reed’s Speech . . . . . . . . . . . . . . . . . NAC/SMHA Position Paper on Trauma and Abuse Histories What Can Happen to Abused Children . . . . . . . . . . . . . . Some Common Reactions to Trauma . . . . . . . . . . . . . . . Trauma Assessment for Department of Mental Health . . . Facilities/Vendors Guidelines for De-Escalation Preference Form . . . . . . . . . De-Escalation Form for Department of Mental Health . . . . Facilities/Vendors Module 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9 .9 11 12 14 14 15 16 17 20 21 22 23 24 25 25 26 27 . . . . . . 28 . . . . . . 28 . . . . . . 29 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 35 41 50 51 . . . . . . 54 . . . . . . 55 Understanding the Impact of Trauma 3 Roadmap to Seclusion and Restraint Free Mental Health Services Excerpts from Dealing With the Effects of Trauma: A Self-Help Guide Grounding Techniques . . . . . . . . . . . . . . . . . . . . Web Sites Related to Trauma. . . . . . . . . . . . . . . . Resources on Secondary Trauma . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . Module 2 . . . . . . . . . . . 59 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62 64 65 67 Understanding the Impact of Trauma 4 Roadmap to Seclusion and Restraint Free Mental Health Services Overview A useful resource you may wish to read is In Their Own Words: Trauma Survivors and Professionals They Trust Tell What Hurts, What Helps, and What Is Needed for Trauma Services (Maine Trauma Advisory Groups Report, 1997). All of the consumer quotes used in this module are from this source. For copies, please call the Maine Department of Mental Health, Mental Retardation and Substance Abuse Services, Office of Trauma Services at (207) 287-4250. Adult survivors of trauma are disproportionately represented in the mental health system. Research suggests that at least half of all women and a substantial number of men who are diagnosed with a mental illness have a history of physical or sexual abuse or both (Brennan, 1997). Data on children and adolescents suggest even higher percentages (Massachusetts Department of Mental Health, 1995). Traditional treatment modalities, including the use of seclusion and restraint, are not always appropriate for trauma survivors, and may in fact be retraumatizing. “Any intervention that recreates aspects of previous traumatic experiences or that uses power to punish is harmful to the individual involved” (NASMHPD, 1998). It is important for staff to recognize the impact trauma can have on people diagnosed with a mental illness. Understanding how seclusion and restraint can in fact retraumatize and further abuse individuals who are already coping with a number of issues is vital to the elimination of the practice of seclusion and restraint. Definitions Related to Trauma (Source: www.childtraumaacademy.com) Trauma can be defined as extreme stress that overwhelms a person’s ability to cope. Some of the behaviors that developed in response to the initial trauma were survival strategies that no longer work. Many factors affect how any one person responds to trauma, including life experiences before and after the trauma, the age at which the trauma first occurred, the length and frequency of the trauma, the coping skills developed to deal with the trauma, who caused the trauma, and what help was provided after the trauma. Symptoms of trauma can include self-injury, assaultiveness, suicidality, substance abuse, impaired interpersonal relationships, repeated victimization, flashbacks, dissociation, and disturbances of mood and self-esteem. Flashbacks are reoccurring memories, feelings, or perceptual experiences of a past event. Most times, flashbacks are traumatic and the person may lose awareness of present reality. The person re-experiences the past as if it were happening right now. Module 2 Understanding the Impact of Trauma 5 BACKGROUND BACKGROUND FOR THE FACILITATORS: UNDERSTANDING THE IMPACT OF TRAUMA Roadmap to Seclusion and Restraint Free Mental Health Services Triggers are clues that remind a person of the trauma (often unconsciously) and start the response of re-experiencing or avoiding the trauma. Identifying triggers and realizing they are a normal response to trauma is part of the healing process. People who have experienced trauma often refer to themselves as “survivors.” Common Reactions to Trauma Common reactions to trauma can include physical reactions such as nervous energy, muscle tension, grinding one’s teeth, and upset stomach. Mental reactions to trauma may vary from a heightened sense of awareness of surroundings to a lessened sense of awareness or even disconnection from oneself. Difficulty making decisions and difficulty concentrating are also common. Fear, inability to feel safe, loss of trust and self-esteem, and feeling chronically empty are common emotional reactions. Finally, behavioral reactions include changes in eating habits, an increase or decrease in sexual activity, becoming withdrawn or isolated from others, and becoming confrontational. Effects of Trauma on the Brain (Source: www.childtraumaacademy.com) We are just beginning to understand and recognize the physiological, neurological, and cognitive responses to trauma. Trauma in childhood can permanently alter neuron response and cognitive pathways in the brain. Trauma also affects the autonomic nervous system, which reaches into every major organ of the body. Trauma may be associated with abnormal activation of the amygdala, abnormal levels of cortisol, epinephrine, and norepinephrine, and structural changes to the hippocampus. All of these brain structures and neurochemicals play key roles in regulating our emotional, behavioral, physical, and mental health. Finally, the incidence of other serious illnesses, including chronic pain with no medical basis and cardiovascular and digestive problems, is higher among people who have experienced severe trauma. They are also more likely to have high blood pressure, atherosclerotic heart disease, abnormal thyroid and other hormone functions, and to be more susceptible to infections and other immune system disorders. Differential Response to Threat (Source: www.childtraumaacademy.com) Research indicates that people generally respond in one of two ways to a perceived threat: dissociation or hyperarousal (Perry, www.ChildTrauma Academy.com). People who dissociate become detached, numb, compliant, have a decreased heart rate, and experience a suspension of time, de-realization, “mini-psychoses,” and fainting. People who respond with hyperarousal may become hypervigilant, have anxiety, be reactive and have an alarm response, have an increased heart rate, and experience either fight (terror) or flight (panic). Module 2 Understanding the Impact of Trauma 6 BACKGROUND Dissociations are a wide range of responses that are usually some form of numbing or “tuning out.” The person is disconnected from full awareness of self, time, and or/external circumstances. Roadmap to Seclusion and Restraint Free Mental Health Services A trauma paradigm helps both staff and persons with a mental illness understand and change behaviors that no longer work. For all people who have a background of experiencing trauma, a clinical assessment of specific circumstances that elicit potentially harmful behaviors and what responses may help de-escalate problem behaviors is necessary and required by Joint Commission on Accreditation of Healthcare Organizations standards (JCAHO, 1995). Assessment of Trauma Accurately diagnosing trauma early on in hospitalization can significantly decrease the use of seclusion and restraint. Misdiagnosis is common and can lead to inappropriate medication, and wrong or ineffective treatment. Consumers are often reluctant to disclose a history of trauma because they are fearful of being judged, invalidated, or not believed. It is important for staff to recognize that how they ask about a history of trauma can significantly influence how a consumer responds. It is recommended that trauma history questions be asked routinely as part of a standard interviewing process, and the information, once obtained, be used to help guide treatment choices and recovery. In addition, staff needs to be trained in understanding behavior from a trauma paradigm. Gayle Bluebird, a nurse and a consumer, developed tools for assessing trauma and de-escalation preferences for consumers with trauma histories. Similar forms have been developed by the Massachusetts Department of Mental Health Services and are available as handouts. We strongly encourage participants to take these forms back to their facilities and adapt them for their own use. An essential step to include is how this information will be used on a daily basis once it has been gathered. Retraumatization via Hospitalization Consumers often view hospitalization itself as retraumatizing, not to mention the use of seclusion and restraints. “You are terrified and you try to get away from them and you strike out to protect yourself. Then they call you ‘assaultive’ and that follows you to the next hospital and they say to you, ‘I hear you hit someone.’” Unfortunately, people who are labeled as the most difficult clients often end up getting restrained or secluded. It is important to recognize the secondary traumatization of seclusion and restraint for both consumers and staff. Module 2 Understanding the Impact of Trauma 7 BACKGROUND Understanding and using a trauma paradigm can be significant in creating and sustaining cultural change on a unit. A trauma paradigm includes examining how a person with a mental illness might be retraumatized, particularly by the use of seclusion and restraint. People who have been sexually assaulted have said repeatedly that the retraumatization of being stripped and strapped down by staff was unbearable and caused further harm. “After they unlocked the door and they dragged me in there, they said, well you can’t keep your clothes for danger issues. And they made me strip down. They kept a video on me the whole time. For a girl who is awkward and is in there for issues of abuse at home, all that did was extend my hate.” Roadmap to Seclusion and Restraint Free Mental Health Services What Survivors Want in Times of Crisis In general, if staff thinks about what they would want in times of crisis, the same would hold true for consumers. It is often the simple things. For example, “I want someone who can BE with me when I am in distress; be present with me when I am in pain.” “I want someone who will acknowledge my pain without trying to ‘fix’ it. This takes someone who knows his/her own pain and is not afraid of it or of yours.” Staff Trauma (Secondary Traumatization) Staff members can experience both primary and secondary traumatization in their work environment. We know that 60 percent of all direct care staff are injured at some point in their work, which is a type of primary traumatization (JCAHO, 1999, George Blake testimony). Secondary traumatization is known by many names: compassion fatigue, secondary or vicarious traumatization, and burn out. The symptoms of secondary traumatization are usually less severe, but can affect the livelihoods and careers of mental health workers. It is important for staff to examine their own trauma, recognize their own symptoms and triggers, and develop their own plan of self-care in this demanding line of work. Finally, we cannot forget secondary traumatization that may occur for consumers and staff as they witness the violence (seclusion and restraint) that may happen on a unit. This is an area that needs much more exploration in the literature. Healing From Trauma Sue Coates from Turning Points, an agency in Grand Rapids, MI, in a presentation listed the following five elements necessary for healing from trauma: safety, empowerment, creation or restoration of positive self-regard, reconnecting to the world, and intimacy. Grounding Techniques Grounding refers to methods for stopping the re-experiencing of a trauma, or related symptoms, and getting back to the here and now. When a consumer reports/appears unusually anxious or vulnerable, is nonresponsive, or is reacting in other ways suggestive of re-experiencing trauma, try to help him or her focus on something in the present using one or more of the five senses: sight, smell, hearing, taste, or touch. For example, looking at a calendar with a current date on it may be helpful. Module 2 Understanding the Impact of Trauma 8 BACKGROUND De-Escalation Preferences Gathering information, in advance, from consumers about what helps and what hurts during times of crisis is key. Consumers can often tell staff specifically what works for them and what triggers them in advance of a crisis. This information needs to be readily accessible for staff and discussed well in advance of any crisis. An example of a de-escalation preference form that can be used as a template is included in the handouts. Roadmap to Seclusion and Restraint Free Mental Health Services Welcome participants and review names. Make sure everyone has a nametag or name tent. It may be helpful to provide a quick review of Module 1: The Personal Experience of Seclusion and Restraint. Then go over the learning objectives. Learning Objectives Upon completion of this module the participant will be able to: • Define trauma and describe how it can impact consumers in mental health settings • List common reactions to trauma, and identify how trauma affects the brain • Understand how hospitalization/seclusion/restraint can be retraumatizing for consumers • Incorporate trauma assessment and de-escalation forms into current practices • Recognize and utilize positive coping mechanism to deal with secondary traumatization Overview • This module is an overview of trauma and how trauma can impact working with consumers and direct care staff. Included is how hospitalizations, seclusion, and restraint can be retraumatizing to consumers and/or direct care staff that have a history of abuse or trauma. • Adult survivors of trauma are disproportionately represented in the mental health system. Depending on how the research was conducted, it appears consistently that approximately 70 to 80 percent of consumers diagnosed with a mental illness also have a history of trauma. Trauma is often underdiagnosed. Little research is available on the rates of direct care staff with histories of trauma. • Early childhood trauma actually physiologically impacts brain development. Many of the behaviors associated with trauma may be a result of this altered brain functioning. • “Any intervention that recreates aspects of previous traumatic experiences or that uses power to punish is harmful to the individual involved” (NASMHPD, 1998). • When working from a trauma paradigm, difficult behaviors are not pathologized, but rather are seen as brilliant coping mechanisms developed as a response to previous trauma. • Ideally, trauma would be assessed and included in the treatment plan for all consumers/ survivors, and direct care staff would be aware of and trained in issues of trauma. Module 2 Understanding the Impact of Trauma 9 PRESENTATION PRESENTATION Roadmap to Seclusion and Restraint Free Mental Health Services “Being a survivor is feeling isolated, not daring to share that part of my life (trauma) with people for fear of being rejected, feeling defective, feeling powerless, lack of understanding from professionals that whatever behaviors we took on was our way of calling for help even if it doesn’t fit society’s view of what is ‘normal’ behavior.” Survivor from Maine • For consumers, there is a real fear of sharing trauma histories with direct care staff, because oftentimes it negatively impacts how they are treated. “What helps me (deal with trauma) is professionals who have the ability to take care of themselves, be centered, and not take on what comes out of me – not hurt by what I say – sit, be calm and centered and not personally take on my issues.” Survivor from Maine • Consumers are really asking for direct care staff to be present with them—not to fix the trauma or its outcome, but to really listen and be present. • Trauma often feels like a loss of control. For consumers, being in the hospital also feels like loss of control. Being secluded or restrained really feels like loss of control. Module 2 Understanding the Impact of Trauma 10 PRESENTATION • The quotes and information from consumers in this module come from In Their Own Words: Trauma Survivors and Professionals They Trust Tell What Hurts, What Helps, and What Is Needed for Trauma Services. The Maine Trauma Advisory Groups compiled this report in 1997. Roadmap to Seclusion and Restraint Free Mental Health Services Trauma Background OBJECTIVE: Familiarize participants with trauma paradigms. PROCESS: Divide the class into four groups. Assign each group a different one of the four articles listed below and distribute copies to each participant. Have each group report to the large group on the article they read. They should tell the group who wrote the article and which stakeholder groups the author(s) represents. Then they should share three key points they think are the most important things to know about the information in the article they read. Facilitate a discussion. DISCUSSION QUESTIONS: MATERIALS REQUIRED: APPROXIMATE TIME REQUIRED: What was most compelling to you about these articles? What do you disagree with? What has your experience been dealing with trauma survivors? Copies of each article for each participant to take home: • National Association of State Mental Health Program Directors— Position Statement on Services and Supports to Trauma Survivors • Excerpts from Kate Reed’s speech • National Association of Consumer/Survivor Mental Health Administrators—Position Paper on Trauma and Abuse Histories: The Prevalence of Abuse Histories in the Mental Health System • What Can Happen to Abused Children When They Grow Up— If No One Notices, Listens, or Helps? (Maine Office of Trauma Services, 2001) 25 minutes Module 2 Understanding the Impact of Trauma 11 PRESENTATION Exercise/Discussion—Module 2 Roadmap to Seclusion and Restraint Free Mental Health Services Definition of Trauma: Extreme stress that overwhelms someone’s ability to cope. Flashback A recurring memory, feeling or perceptual experience of a past event, usually traumatic, including losing awareness of present reality. The person feels like they are reexperiencing the past as if it were happening right now. Module 2 Understanding the Impact of Trauma 12 PRESENTATION Definitions Related to Trauma It is important to be on the same page using the same language about trauma. This training will use the following definitions related to trauma: Roadmap to Seclusion and Restraint Free Mental Health Services A wide range of responses that are usually some form of numbing or “tuning out.” The person is disconnected from full awareness of self, time, and/or external circumstances. Triggers Cues that remind a person of the trauma (often unconsciously) and start the response of reexperiencing or avoiding the trauma. Identifying triggers and realizing they are a normal response to trauma is part of the healing process. Module 2 Understanding the Impact of Trauma 13 PRESENTATION Dissociations Roadmap to Seclusion and Restraint Free Mental Health Services Common Reactions to Trauma OBJECTIVE: Familiarize participants with common reactions to trauma. PROCESS: Ask participants to think of people they have worked with who are trauma survivors and then ask them to brainstorm common reactions to trauma. Keep track of the list on the overhead/chalkboard/ paper. Once they have listed as many as they can think of, hand out the Some Common Reactions to Trauma article. DISCUSSION QUESTIONS: Which common reactions to trauma did we miss? Which common reactions to trauma do you most frequently deal with on the unit? Which common reactions to trauma are the most difficult to deal with and why? MATERIALS REQUIRED: Some Common Reactions to Trauma by Mary S. Gilbert, Ph.D. APPROXIMATE TIME REQUIRED: 20 minutes Module 2 Understanding the Impact of Trauma 14 PRESENTATION Exercise/Discussion—Module 2 Roadmap to Seclusion and Restraint Free Mental Health Services Science is just beginning to understand the physiological, neurological, and cognitive responses to trauma. The following information is from www.childtraumaacademy.com. Effects of Trauma on the Brain • Trauma can activate various systems in the brain that actually change neuron response and cognitive pathways. • Children can develop systems in their brains that cause them to be constantly hyperaroused and hypervigilant or dissociate. • Trauma affects the autonomic nervous system. • Trauma may be associated with abnormal activation of the amygdala, abnormal levels of cortisol, epinephrine, and norepinephrine, and structural changes to the hippocampus. • The incidence of other serious illness, including chronic pain with no medical basis, cardiovascular and digestive problems, is higher among people who have experienced severe trauma. Effects of Trauma on the Brain www.ChildTrauma.org • “These images illustrate the negative impact of neglect on the developing brain. In the CT scan on the left is an image from a healthy 3-year-old with an average head size. The image on the right is from a 3-year-old child suffering from severe sensory-deprivation neglect. Module 2 Understanding the Impact of Trauma 15 PRESENTATION Effects of Trauma on the Brain Roadmap to Seclusion and Restraint Free Mental Health Services Differential Response to Threat (Source: www.childtraumaacademy.com) • Many factors affect one’s response to trauma, including life experiences before and after the trauma, age at which the trauma occurred, length and frequency of the trauma, coping skills, who caused the trauma, and help that was available after the trauma. • Responses to threat vary greatly from individual to individual. • The flight (panic) or fight (terror) response is a well-documented reaction to danger. Our bodies have the same physiological reactions to dangers, whether it is a charging tiger or an episode of restraint. • Other responses to trauma include dissociation and hyperarousal or a combination of the two. • Children may not be able to fight or flee during times of threat—and may therefore use dissociation as a coping mechanism. • We all use dissociative mental mechanisms even when we are not threatened— for example, daydreaming. Differential Response to Threat Dissociation Hyperarousal Detached Numb Compliant Decreased Heart Rate Suspension of Time De-realization Mini-psychoses Fainting Hypervigilance Anxious Reactive Alarm Response Increased Heart Rate Freeze: Fear Flight: Panic Fight: Terror Source: Perry, M.D., Ph.D. www.childtraumaacedemy.com Module 2 Understanding the Impact of Trauma 16 PRESENTATION This child’s brain is significantly smaller than average and has abnormal development of cortex.” These images are from studies conducted by a team of researchers from the Child Trauma Academy (www.ChildTrauma.org) led by Bruce D. Perry, M.D., Ph.D. Roadmap to Seclusion and Restraint Free Mental Health Services Assessment of Trauma • Mental health professionals cannot develop appropriate treatment plans or interventions for clients in the absence of knowledge about their histories of physical or sexual abuse (JCAHO, Accreditation Manual for Mental Health, 1995). • All clients need to be asked about their history of sexual, physical, and verbal abuse in all clinical settings. • When doing an assessment, it is important to gather accurate information. At the same time, it is important not to reopen a traumatic event without having the resources available to adequately deal with it. This can be a source of tension on short stay units. However, it is important to ask the questions about trauma directly. “Never being asked about trauma is like the abuse as a child.” Survivor from Maine • The following material and quotes were taken from In Their Own Words, a work of over 200 women and men in the State of Maine who hope that the truth and wisdom of their work will be heard by those who are in power. Module 2 Understanding the Impact of Trauma 17 PRESENTATION Assessment of Trauma • Misdiagnosis of trauma may lead to ineffective treatment. Roadmap to Seclusion and Restraint Free Mental Health Services Survivors and Trusted Professionals Speak About Recognizing (or Avoiding) the Prevalence, Indicators, and Impact of Trauma: What Hurts • The way questions were asked was impersonal, cold, and intimidating. (Survivor) • It is fearful to disclose the abuse. “You risk being judged, being penalized, being discredited, invalidated, and having your feelings minimized.” (Survivor) “When you get a mental illness label, you lose all credibility.” (Survivor) • The consequences of misdiagnosis include wrongful medication, overmedication, tardive dyskinesia and other reactions to medications, inappropriate and ineffective treatment. (Professional) • Stigma in the mental health field is a problem. It takes a longer time for men to disclose abuse than women. • “Men do not disclose their histories of sexual and physical abuse because of the stigma attached to being a male survivor.” (Professional) Survivors and Trusted Professionals Speak About Recognizing (or Avoiding) the Prevalence, Indicators, and Impact of Trauma: What Helps • Staff who are calm, who will sit and listen in a relaxed manner, are essential. (Survivor) • The person doing the intake should understand the fear (of disclosing abuse). “Threats from the past are still present. If you tell, you will die, your sister will die.” (Survivor) • Training is needed in looking for, identifying, assessing, and treating mental health clients in the framework of trauma. (Professional) • Training is needed in putting aside one’s own beliefs and expectations, and meeting clients where they are at, rather than where I think they may be. (Professional) Module 2 Understanding the Impact of Trauma 18 PRESENTATION • Both survivors of abuse and professionals they trust gave voice to their experiences with the individuals, organizations, and systems that have been shaped and influenced in such a way that they frequently harm, instead of help, consumers. Roadmap to Seclusion and Restraint Free Mental Health Services Module 2 Understanding the Impact of Trauma 19 PRESENTATION • Massachusetts has worked extensively in this area and has developed a Trauma Assessment Form that can be used as a guideline for obtaining trauma histories. • Once the information has been collected, it is critical to do the next step of designing treatment plans using the trauma information. • It is also critical to obtain information from the consumer on what strategies have been effective to reduce or avoid the use of seclusion and restraint. This includes identifying interventions that might further traumatize them. • Massachusetts has developed a Restraint Reduction Form that is also included in the intake session with a consumer. • It is important to know the gender of the perpetrator and give consumers a choice about who will be with them during and after a restraint episode. • In summary, it is critical to obtain information relevant to (1) history or abuse, (2) de-escalation strategies that have worked, and (3) what forms of seclusion/restraint are most helpful and least traumatic. Roadmap to Seclusion and Restraint Free Mental Health Services Assessment of Trauma OBJECTIVE: Familiarize participants with one method of assessing trauma. PROCESS: Direct participants to pair up. One person will role-play a consumer. It may be helpful for staff to think of a specific consumer to use as a model for this role-play. Have the person role-playing the consumer think of what kind of trauma (known or unknown) might be present for the consumer. The consumer is not allowed to look at the form as the staff person is filling it out. Use the Trauma Assessment for Department of Mental Health Facilities/Vendors and have the person role-playing a staff person fill out the form. Facilitate a discussion. DISCUSSION QUESTIONS: MATERIALS REQUIRED: APPROXIMATE TIME REQUIRED: What worked well about this kind of assessment form? What concerns do you have about using this type of form? How is this similar or different from intakes you currently do on your unit? Trauma Assessment for Department of Mental Health Facilities/ Vendors handout 20 minutes Module 2 Understanding the Impact of Trauma 20 PRESENTATION Exercise/Discussion—Module 2 Roadmap to Seclusion and Restraint Free Mental Health Services Survivors Speak About Retraumatization via Hospitalization - Creating Safe Places for Healing: What Hurts – pg 1 • There is a lack of knowledge/training for survivors and staff regarding therapeutic approaches and the link between trauma histories and the presenting symptoms causing the need for hospitalization. (Survivor) • There is a general disrespect for patients as human beings that should be valued as full partners in the treatment and recovery process. • “They take your clothes away and watch you take showers.” (Survivor) • Insurance payments control the length of hospitalization. Survivors Speak About Retraumatization via Hospitalization - Creating Safe Places for Healing: What Hurts – pg 2 • “You’re sick enough to stay when you have insurance. You’re suddenly improved enough to leave as soon as your insurance runs out.” • Seclusion and restraint techniques are retraumatizing and inhumane approaches to managing symptoms. • “I would rather die than go back to the hospital.” • “It involves 5-6 guys chasing you down, holding you down – just like rape. So you are terrified and you try to get away from them and you strike out to protect yourself. Then they call you ’assaultive’ and that follows you to the next hospital and they say to you, ‘I hear you hit someone.’” (Survivor) Module 2 Understanding the Impact of Trauma 21 PRESENTATION Retraumatization via Hospitalization Roadmap to Seclusion and Restraint Free Mental Health Services • Training needs to be offered that addresses all the aspects of trauma recovery (staff and client issues). • “Training needs to be done in (1) how the staff can avoid being reactive; (2) recognizing when the staff or the client is in a state when they cannot receive information, for example because of high anxiety; and (3) when the staff should be interactive.” (Professional) • Survivors need training also. • “When asking survivors about seclusion and restraint, ask them about what responsibility they have in the situation. Do not automatically put the person in a victim role.” (Survivor) De-Escalation Preferences • Gathering information about what helps and what hurts consumers during times of crisis is useful. • Consumers can often tell staff specifically what works for them and what triggers them in advance of a crisis. • If this information is gathered in advance, and all staff are aware of the information, it can be very helpful in defusing a crisis situation. Module 2 Understanding the Impact of Trauma 22 PRESENTATION Survivors and Trusted Professionals Speak About Retraumatization via Hospitalization - Creating Safe Places for Healing: What Helps Roadmap to Seclusion and Restraint Free Mental Health Services De-Escalation Preferences OBJECTIVE: Familiarize participants with one method of determining de-escalation preferences. PROCESS: Direct participants to pair up in the same pairs as in the previous exercise. This time, switch roles; one person will play a consumer and the other will play a staff member. Hand out the Guidelines for De-Escalation Form. Have the person role-playing a staff person fill out the De-Escalation Preference Form. Facilitate a discussion. DISCUSSION QUESTIONS: MATERIALS REQUIRED: APPROXIMATE TIME REQUIRED: What worked well about this kind of preference form? What concerns do you have about using this type of form? What do you see as the pros and cons of asking consumers these types of questions? Guidelines for De-Escalation Form handout De-Escalation Preference Form handout 20 minutes Module 2 Understanding the Impact of Trauma 23 PRESENTATION Exercise/Discussion—Module 2 Roadmap to Seclusion and Restraint Free Mental Health Services Survivors: When I am in crisis, I need persons: • “Who can BE with me when I am in distress; be present with me when I am in pain.” • “Who will acknowledge my pain without trying to ‘fix’ it. This takes someone who knows his/her own pain and is not afraid of it or of yours.” • “Who is not afraid of my sexual abuse. I don’t need someone else’s fear.” • “Who has worked with their own sexual abuse – another survivor can do this.” Survivors: When I am in crisis, I need persons: (pg 2) • “Who will ask what would help and trust I know whether or not I need hospitalization.” • “Who understands the coping role of suicidal thoughts, as a relief, and end to the pain, as giving a sense of some control.” • “Who knows the difference between “I want to die” (despair, hopelessness) and “I want to kill myself” (anger, defiance).” • “Who will understand, control, and prevent me from hurting myself when I am in danger, but still give me options and choices, and respect me in a way that doesn’t treat me like an animal.” • What consumers and direct care staff want in times of crisis is universal. We all want the same things. Module 2 Understanding the Impact of Trauma 24 PRESENTATION What Survivors Want in Times of Crisis • Think about a time you were in crisis. What did you want? Have the group brainstorm ideas out loud. Roadmap to Seclusion and Restraint Free Mental Health Services Healing From Trauma • Sue Coates, from Turning Points, an agency in Grand Rapids, MI, in a presentation listed five necessary elements for healing from trauma. (See slide.) Five Necessary Elements for Healing From Trauma - “Turning Points” by Sue Coates Safety Empowerment Creation or Restoration of Positive Self Regard Reconnecting to the World Intimacy Module 2 Understanding the Impact of Trauma 25 PRESENTATION Staff Trauma (Secondary Traumatization) • Working in mental health is a demanding career that impacts all of us. Whatever happens on the units, impacts direct care staff and consumers. • Secondary traumatization is known by many names: compassion fatigue, secondary or vicarious traumatization, absenteeism, and “burn out.” • Secondary traumatization affects primarily the workers who help trauma and disaster victims—including mental health staff. • The symptoms of secondary traumatization are usually less severe than Post-Traumatic Stress Disorder like symptoms (e.g., hypervigilance, flashbacks to previous trauma, difficulty concentrating), but they can affect the livelihoods and careers of mental health workers. • Secondary traumatization can also occur when one is a witness to violence. For example, other consumers watching a forceful escort to the seclusion room might experience secondary traumatization. Staff members watching another staff member get hurt in a take down could also experience secondary trauma. Roadmap to Seclusion and Restraint Free Mental Health Services Grounding Techniques Distribute the handout Grounding Techniques by Mary Gilbert and take 10 minutes to do the exercise on grounding techniques. Journal/Take Action Challenge Give participants time to write on one to two Journal topics and at least one of the Personal Take Action Challenges and one of the Workplace Take Action Challenges. They will use these Take Action Challenges extensively on the last day of the training. Module 2 Understanding the Impact of Trauma 26 PRESENTATION • Safety includes physical needs such as food, clothing, and shelter. It also includes feeling psychologically and emotionally safe with those around you—knowing you will not be abused or harmed. If consumers are witnesses to other consumers’ seclusion and restraint, this may impair their feelings of safety. • Empowerment restores the hope that one has the potential and ability to recover. Consumer-driven supports, such as the Wellness Recovery Action Plan, the advance psychiatric directive, and peer mentoring are examples of empowerment. • Creation or restoration of positive self-esteem naturally flows from empowerment. As consumers learn to rely on their own abilities and skills, their outlook on their lives and future improves and enhances their positive self-esteem. • Reconnecting to the world gives consumers a sense of normalcy. • All human beings need intimacy or closeness with another human being. Establishing positive relationships adds to a consumer’s ability to heal from trauma. • The Center for Mental Health Services, within the Substance Abuse and Mental Health Services Administration, published a booklet, Dealing With the Effects of Trauma: A Self-Help Guide. To see the complete publication, go to the Web at www.mentalhealth.org/publications/allpubs/SMA-3717/default.asp. • Assisting consumers to develop their own coping mechanisms around trauma can be very empowering. Roadmap to Seclusion and Restraint Free Mental Health Services Grounding Techniques OBJECTIVE: Familiarize participants with grounding techniques. PROCESS: Have two volunteers do a role-play. One person will play the role of the consumer who is having flashbacks and/or dissociating. If possible, pick a person to play the role of the direct care staff member who has experience in grounding techniques. Facilitate a discussion. DISCUSSION QUESTIONS: What types of things were most helpful in this role-play for grounding techniques? What concerns do you have about using these types of techniques? Which of these techniques do you typically use on a regular basis on your unit? MATERIALS REQUIRED: Grounding Techniques by Mary S. Gilbert, Ph.D. APPROXIMATE TIME REQUIRED: 10 minutes Module 2 Understanding the Impact of Trauma 27 PRESENTATION Exercise/Discussion—Module 2 Roadmap to Seclusion and Restraint Free Mental Health Services Journal Topics Pick one or two questions and respond. Your responses are confidential. 1. Consider the impact that using seclusion and restraints has had on you as a staff member. Write about your first experience with seclusion and restraint. Describe the incident in as much detail as possible and how it made you feel. 2. How have you personally changed as a result of secluding and restraining others? 3. What do you see as the pros and cons of using seclusion and restraints? 4. Write about your own trauma or secondary trauma. 5. How could you incorporate stress management skills into your life and/or your workplace? 6. How would your daily work change if the mental health system wholeheartedly adopted the underpinnings of a trauma model? Personal Take Action Challenges Pick one topic and develop a plan. You will use this plan on the last day of training. 1. Make a list of three things that you personally can commit to every day at work to prevent the use of seclusion and restraint. Make a detailed plan of how you will implement these changes. 2. Find one area in your life where you could work recovering from trauma. Make a list of two things you can personally commit to in your daily life to move you forward in your own journey of recovery from trauma. Workplace Take Action Challenges Pick one topic and develop a plan. You will use this plan on the last day of training. 1. Make a list of three things that you can personally commit to doing when you get back to work to help change the system to eliminate seclusion and restraint. 2. Who has the power to eliminate seclusion and restraint in your facility? How could you design an alliance with them? 3. How could you utilize the trauma assessment form and/or de-escalation preference form in your workplace? Module 2 Understanding the Impact of Trauma 28 HANDOUT JOURNAL TOPICS AND TAKE ACTION CHALLENGES FOR MODULES 1 & 2 Roadmap to Seclusion and Restraint Free Mental Health Services National Association of State Mental Health Program Directors The National Association of State Mental Health Program Directors (NASMHPD) recognizes that the psychological effects of violence and trauma in our society are pervasive, highly disabling, yet largely ignored. NASMHPD believes that responding to the behavioral health care needs of women, men, and children who have experienced trauma from violence is crucial to their treatment and recovery and should be a priority of State mental health programs. The goal of recovery from trauma is a fundamental value held by NASMHPD and its individual members, State mental health authorities. Toward this goal, it is important to develop an understanding of the resiliency factors, and the kinds of treatment, services, and supports that contribute to recovery. The experience of violence and trauma can result in serious negative consequences for an individual’s mental health, self-esteem, use of substances, and involvement with the criminal justice system. Indeed, trauma survivors can be among the people least well served by the mental health system as they are sometimes referred to as “difficult to treat” —they often have co-occurring mental health and substance use disorders, can be suicidal or self-injuring and are frequent users of emergency and inpatient services. Trauma is an issue that crosses service systems and requires specialized knowledge, staff training, and collaboration among policymakers, providers, and survivors. Study findings indicate that adults in psychiatric hospitals have experienced high rates of physical and/or sexual abuse, ranging from 43 to 81 percent. Other research recently has found that 92 percent of homeless women and 81 percent of non-homeless women in poverty had been physically and/or sexually abused. Trauma is also frequently experienced as highly stigmatizing and often can create a reluctance to seek help. There is reason to believe that men may significantly under-report childhood abuse. Services for trauma survivors must be based on concepts, policies, and procedures that provide safety, voice, and choice as defined by consumers/survivors. Trauma services must focus first and foremost on an individual’s physical and psychological safety. Services to trauma survivors must also be flexible, individualized, culturally competent, and promote respect and dignity. Innovations in trauma services are becoming a focus of increased discussion and change within the public mental health system. A number of State mental health authorities have begun to address the needs of trauma survivors in the mental health system by revising seclusion and restraint guidelines to prevent the repetition of the experience of trauma, adopting clinical guidelines for people with serious mental illnesses who have histories of trauma, Page 1 of 2 Module 2 Understanding the Impact of Trauma 29 HANDOUT Position Statement on Services and Supports to Trauma Survivors Roadmap to Seclusion and Restraint Free Mental Health Services NASMHPD Statement (continued) NASMHPD is dedicated to furthering the understanding of the effects of physical and/or sexual abuse and increasing its treatment within the public mental health system. State mental health authorities are committed to recognizing and responding to the needs of trauma survivors with mental illnesses and their families. It should be a matter of best practice to ask persons who enter mental health systems, at an appropriate time, if they are experiencing or have experienced trauma in their lives. NASMHPD recognizes that some policies and practices in public and private mental health systems and hospitals, including seclusion and restraint, may unintentionally result in the revictimization of trauma survivors, and therefore need to be changed. NASMHPD is committed to working with States, consumers/survivors, and experienced professionals in the trauma field to explore ways to improve services and supports for trauma survivors. These efforts may include, but are not limited to, developing improved methods for reducing stigmas related to trauma; developing and disseminating information and technical assistance on best practices; providing forums for a national dialogue on the needs of trauma survivors; and cooperating with other State and national organizations to develop prevention and education initiatives to address the issue of trauma. Passed unanimously by the NASMHPD membership on December 7, 1998. Page 2 of 2 Module 2 Understanding the Impact of Trauma 30 HANDOUT developing statewide strategic action plans, producing training materials, and empowering statewide committees to develop and improve trauma services. Roadmap to Seclusion and Restraint Free Mental Health Services Excerpts from Kate Reed’s Speech I’m very moved by being here. I feel teary. There’s a lot of emotion because this is something that I lived with in silence for 35 years of my life. To be sitting here and seeing other women and men share their experiences, and know that it takes an enormous amount of courage to live in terror on a daily basis and just put your feet on the floor every morning. But there are many people who are not here who did not live through it and I want to say that I hold them in memory now, too…. I was incested at the age of 2 ½ and it lasted until the time I was 8. It was by my paternal grandfather who lived right next door. It lasted for approximately 8 years and the incest progressively got worse and later on it involved bodily penetration. Those are the criteria that sort of set people up for having long-term psychological problems. Judith Hermann, an incredible feminist psychiatrist who writes about trauma issues, says that a single source of trauma like rape of an adult with an existing healthy personality can abrade that personality, can start eroding the health. But for women who have multiple traumas throughout childhood, the trauma itself both forms and deforms the personality. What we are hearing from women talking about their experiences is the amount of reconstruction work you have to do. This is not the walking wounded. I was lucky to come out with my life. I had multiple suicide attempts. I overdosed and wound up in intensive care. To me, suicide held out a hope that the terror, the pain, all of it would stop. I had some control. If that’s the only control I had I knew at some point I would say I’m not going to commit suicide today, maybe I will tomorrow. That’s the reality. I had emotional problems right from the start. I struggled with depression. I struggled with low self-esteem that was off the charts. I mean low self-esteem is putting it mildly when you think of yourself as evil, as bad, as holding some energy that is incredibly dark. I think I lived with just an enormous amount of terror. I was victimized again and again by my grandfather and I lived in terror. I didn’t know when he was going to start again. I didn’t know where. I was always on the lookout for what was coming; what was going to broadside me, and my body remembers that terror. I could forget. I could say that my childhood was fine, but my body remembered in a way that I could not forget, and my body reminds me frequently that it’s still in charge. The post-traumatic stress is for me the hyperarousal level where your arousal level, your base line of anxiety level might hover around a 4 or 5. So that anything that happens can spike me into panic in an instant. Page 1 of 4 Module 2 Understanding the Impact of Trauma 31 HANDOUT Feeling safe is really hard….and this is the one place where I feel really unsafe because I work in the system. I can sit up here and share my experience, but in the back of my mind I wonder if I approach one of you in the Department for a job, you might take that and hold it against me….. Roadmap to Seclusion and Restraint Free Mental Health Services Kate Reed’s Speech (continued) When I say I have made multiple suicide attempts and been hospitalized many times, I worry about what some of you do with that in your head. Because I think that what happens in the system that has historically happened – is that they look at me or any of us who spoke and said what’s wrong with you; what is wrong with you! I want to say it takes an enormous amount of courage to do what we have all done and I’m really grateful to be in the presence of women who have been creative and survived by hook or by crook in whatever way we could. When I look at myself, I think today I can be an incredibly compassionate judge of myself and others. I can be very nurturing; I have nurturing skills. I have an incredible ability to figure out how to heal myself in the face of a system that only retraumatized me, and I’ve hooked up with other people who were healing. I have wonderful people in my life today. I’m in a graduate program; I hope to have a private practice where I will treat incest survivors. My life to me is very hopeful today. I want to talk a little bit about how I got here. I think one of the things that helped me to heal was to not label myself, because I needed to be a human being with human feelings, even if they were in the kind of extreme range of intense emotions. When my divorce was happening and I was getting a lot of incest memories, I had always had a few picture memories but I never had the affect. Then, it was like strap your seat belt; put your crash helmet on and hold on because now here come the pictures WITH the affect. There was an enormous amount of rage; there was an enormous amount of grief; there was an enormous amount of terror, and that went on for 3 or 4 years while I was getting the memories. What helped for me is my husband and I had built a house on the backside of Peaks Island. It was oceanside and it was a beautiful, beautiful setting and I had the backside of the island pretty much to myself. I would be flooded with grief and I would be on the floor in a fetal position just sobbing for hours and then in the middle I’d sort of stop and kind of try to regroup. Then I had my way of a rage that would go on and this process went on for a long, a long time. I had two Escort wagons where the dashboard was broken on both of them because I would be in the car and the rage would just be…like it was too much to contain the intensity of the emotion of the Page 2 of 4 Module 2 Understanding the Impact of Trauma 32 HANDOUT I lost most of my life to trauma. I made choices out of the lie that I was forced to live, and my marriage was a victim of my healing process. I was hospitalized at the age of 21 and it took me 3 or 4 years to come out of that bout. What happened is that I got triggered into a string of post-traumatic stress where it was like getting tumbled over and over again in a wave; every time I tried to come out something else would hit me and I’d go back into the terror and I’d come back out and I’d go back into the terror and I lived that way pretty much daily, suicidal, in an enormous amount of pain and shame for probably 3 years at the first round. Then I managed to crawl out kind of like by the skin of your teeth and your nails to a place where I got married, had children. That was sort of a quiet period for a while and then my marriage was unraveling and I got incest memories at the same time. Roadmap to Seclusion and Restraint Free Mental Health Services Kate Reed’s Speech (continued) What I did was I got a therapist who was herself a survivor and she believed very simply that the baseline was that we can heal ourselves; that we have an internal healer and given the proper environment, we can initiate a healing process that will take us to where we need to go. It didn’t take any fancy technology; for me it didn’t take any medication; it didn’t take any psychiatric diagnoses. I want to put in perspective how the psychiatric community can come to use and try to help us; try to be of service to us. I got rid of as many of the system pieces in my life as I could because I realized that for the last 3 years I’ve been healing from the “help” that I got. I was thrown into restraints when I was suicidal; I was thrown into a straight jacket. I was coming out of an overdose and somebody said to me “What do you want do” and I said, “I want to go out to dinner” and they said “No.” I was in a State hospital for a while and I’ve been in the fashionable Institute of Living in Hartford, Connecticut. What really worked for me was to frame my experience not in a diagnosis but in a spiritual experience. It became a spiritual journey for me. I just let the feelings go. I tried to learn to trust my process and trust my inner healer and that worked for me. I danced a lot; just a dance that would sort of ground the enormous energies that were moving through me. I did a lot of externalization of the internal energy. I did Elizabeth Kübler Ross work where you basically get in a room with 80 people and they throw mattresses on the floor and it’s like being in Dante’s Inferno, but it’s all of that dark stuff that we hold on to. It’s all of the rage; it’s all of the grief; it’s all of the stuff that’s actually very fertile because I think if you mind those emotions that what you come out with is an incredible gift, and I do believe that there are gifts in the experience of healing from incest, for me, I will say. I think you have to be in a certain place in a certain time in your recovery to acknowledge that, and some people may never want to and that’s their choice, but for me there have been an enormous amount of gifts in the process. too. I went to a 12-step program. I had a lot of shame and what worked for me was for somebody else to listen to me talk and to just accept who I was at that moment. To look back at me as another human being and to say, by the way they were holding me with their expression, that I was okay. So I guess what I want to say is there’s no technique stuff that’s really the total answer. To me the people who were most powerful in my life were other people who could be with me in the intensity of my pain and just acknowledge that they were there. They didn’t necessarily Page 3 of 4 Module 2 Understanding the Impact of Trauma 33 HANDOUT experience that I was going through; just to try to have it tip all the scales of what I could possibly cope with. Roadmap to Seclusion and Restraint Free Mental Health Services Kate Reed’s Speech (continued) I also had trouble getting a therapist. I also had trouble paying for my therapist because she was not reimbursable and she was my therapist of choice. I worked with her for 5 years and I had to pay out of pocket. I just want to say I’m glad that everyone is here; I’m glad that the topic is on the table. I think it kills people all of the time and it’s time to start ending the silence around it. Thank you. This selection is excerpts from a speech by Kate Reed, Maine, trauma survivor and mental health professional, from In Their Own Words: Trauma Survivors and Professionals They Trust Tell What Hurts, What Helps, and What Is Needed for Trauma Services, Maine Trauma Advisory Groups Report, 1997. Page 4 of 4 Module 2 Understanding the Impact of Trauma 34 HANDOUT know how to help me sometimes but that they were there with me and I didn’t have to be in terrified place alone. Roadmap to Seclusion and Restraint Free Mental Health Services National Association of Consumer/Survivor Mental Health Administrators The Prevalence of Abuse Histories in the Mental Health System In the last decade, the mental health system has begun to demonstrate some awareness of the prevalence of abuse histories among its clientele. Studies consistently confirm a 50-80 percent prevalence rate of sexual and physical abuse among persons who later acquire diagnoses of mental illness (Breyer, 1987; Beck & Van der Kolk, 1987; Rose et al, 1992; Craine et al, 1988; Stefan, 1996). While many professionals in the field still deny the validity of work documenting these histories, the mental health system is beginning to catch up with groups that have addressed violence toward women, child abuse, and runaway adolescents in realizing the connections between abuse and later difficulties (Alexander & Muenzenmaier, 1998; Smith, 1995; Harris, 1994; New York State Office of Mental Health, 1993; Mental Health Association in New York State & New York State Office of Mental Health, 1994). Among consumers/survivors/ex-patients (C/S/Xs) themselves, the commonality of abuse histories has begun to be acknowledged. With that acknowledgment, the irrelevance of much of their “treatment” in the mental health system has begun to make sense in a new way. Many whose treatment focus has changed from medical model interventions to trauma-oriented therapies, whether professional or peer-run, have recovered in ways once considered impossible. It would seem, therefore, that the mental health system’s recognition of abuse histories would be welcome news among C/S/Xs. However, for many who know the system well, the news is greeted with deep ambivalence. For some, it is somewhat ironic, given the history of silence among most mental health professionals about abusive treatment that is often routine in mental health settings. Others are deeply relieved by professionals’ long-overdue recognition of trauma as a primary issue to be addressed therapeutically, but fear that a system so entrenched in punitive ways will not be able to incorporate the kind of work necessary to heal from trauma (Kalinowski & Penney, 1998). Some C/S/Xs have learned that the abuse in their histories has been the primary formative factor in what was called their “mental illness.” Others see abuse or trauma as part of what affected them, but also believe that their symptoms had a variety of origins, including socioeconomic, spiritual, and/or biological causes. Whatever view individuals hold concerning the role of trauma and abuse in the etiology of their problems, their experiences in the mental health system may color their reaction to the system’s new-found interest in trauma and abuse. Many people have spent years in the system without being asked about their trauma Page 1 of 6 Module 2 Understanding the Impact of Trauma 35 HANDOUT Position Paper on Trauma and Abuse Histories Roadmap to Seclusion and Restraint Free Mental Health Services NAC/SMHA Position Paper (continued) Until recently, the term “survivor,” as used within the C/S/X movement, meant one who survived the irrelevance and frequently the harm of psychiatric interventions. Commonly, individuals have needed to recover from the effects of being labeled and institutionalized in order to begin addressing the issues that led to their encounter with psychiatry. Now that the term means “survivor of abuse” to many practitioners, C/S/Xs seek evidence that the abuse perpetrated by the mental health system itself is also recognized. They are deeply skeptical of trusting clinicians who have never questioned the criteria for involuntary commitment and deprivation of civil rights for so many diagnosed persons. People who have experienced trauma and abuse perpetrated by the very system which purports to help them may have a hard time believing that this same system is now willing and able to assist them in overcoming the effects of trauma. Thus, C/S/Xs who advocate against forced and punitive treatment as traumatizing violations of their humanity, now point out that the majority of diagnosed individuals are actually being retraumatized in psychiatric settings (New York State Office of Mental Health, 1993). In the words of one C/S/X, if one was not a trauma survivor before entering the mental health system, one is sure to become one once labeled and locked up. In other words, no matter what theory an intervention is based on, unless the coercive culture of psychiatry is radically altered, many persons will continue to be traumatized, whether or not such experience is repetitious of their pasts. In regard to the theory itself, some C/S/Xs are relieved by the long-overdue recognition of trauma and abuse as primary factors in the development of symptoms that were once adaptive coping strategies. Believing that this recognition must preclude further violations, they want to do therapeutic work on the issues that trauma and abuse created. Their choice might be to work on this and only this in individual or group work with professionals and/or peers. Others see the traumatic aspect of their histories as part of what affected them, but also believe they have biological or socioeconomic reasons for “symptoms” as well. Thus, they see multifaceted approaches as the only viable way to work. Regardless of what C/S/Xs believe about the etiology of their difficulties, they want what they have always stated to be important: to be heard and treated as individuals and to have Page 2 of 6 Module 2 Understanding the Impact of Trauma 36 HANDOUT history or other aspects of their personal stories; their behavior, rather than their experience, has been the focus of treatment. Many have also felt constantly threatened with the loss of autonomy and civil rights (Blanch & Parrish, 1993). For these individuals, it may be difficult to appreciate the professional world’s “discovery” of a new theory of mental illness, regardless of its relevance to the majority of people caught up in the mental health system. Roadmap to Seclusion and Restraint Free Mental Health Services NAC/SMHA Position Paper (continued) C/S/Xs frequently report that they were never asked about trauma or abuse, and if they were, divulging such history did not yield a specifically responsive result. Most believe the relevance of abuse and trauma should be communicated sensitively, early, and consistently throughout encounters with the system. However, it must be understood that such an approach is still only theory until chosen as useful by the individual consumer/survivor. Given the documentation that the majority of people with psychiatric diagnoses are abuse survivors, many C/S/Xs think the most effective way to address trauma and abuse histories is to assume that all C/S/Xs are potentially abuse survivors. It should be considered integrally important to one’s development up to assessment/admission, and the process of encountering the mental health system can be assumed as potentially retraumatizing or at least “triggering” of previous experience. If trauma were presumed, anyone entering the system would be subject to a more humane, considerate, and relevant approach. Importantly, this would eliminate the need for separate units for “trauma survivors” as if they were different people from those called “mentally ill.” Interventions such as restraint and seclusion would be deemed too traumatizing for anyone in crisis, not only for one whose trauma history is known. This becomes more of an issue as mental health professionals begin to address how to treat abuse survivors, particularly on an inpatient basis. Indeed, the “trauma models” they use often appear much more humane and respectful of the person than do traditional approaches to people with psychiatric diagnoses, and some who specialize in this area believe the new paradigm should dominate the field, regardless of what has brought a person to a mental health crisis. However, as psychiatry gains a foothold in the area, a new division of “patients” can be seen: trauma survivors, with diagnoses like Dissociative Identity Disorder (DID) and Post-Traumatic Stress Disorder (PTSD) vs. (and sometimes co-occurring with) more standard diagnoses of mental illness. In this context, the system continues to employ inhumane methods, such as forced medications or restraints, with some diagnosed persons, while an effort is made to avoid “retraumatizing” others. This division is disturbing to C/S/Xs who see a new hierarchy of oppression forming before their eyes after years of fighting for the full human rights of all who cross the path of the Page 3 of 6 Module 2 Understanding the Impact of Trauma 37 HANDOUT their subjective experience and self-perception respected. Also consistent with C/S/Xs’ stated wishes over the years is the desire to be perceived and treated with hope (Zinman, Harp. & Bead, 1987; Campbell, 1989; Chamberlin, 1990; Knight, 1991; Fisher, 1994; Penney, 1995). It is difficult to count on a system that has routinely dashed hope to now operate from a belief that recovery is possible. But this is essential to any therapeutic plan and one seldom emphasized in professional training. Roadmap to Seclusion and Restraint Free Mental Health Services NAC/SMHA Position Paper (continued) The issue of power differentials is crucial here. Abuse is about one person subjugating another—the violent assertion of one’s will over another. Traumatic experiences, while not always interpersonal, similarly leave people feeling as helpless victims whose control was usurped by a more powerful condition or event. The risk for anyone entering the mental health system is fundamentally a loss of power. Even voluntary admissions to in- or out-patient services are governed by the coercive power held by psychiatry. The loss of power over one’s life, which usually accompanies a diagnosis, is traumatizing for all people, whatever their past history of trauma or abuse. Most C/S/Xs want to believe that practitioners care about outcomes beyond cost efficiency and behavior control. Thus, it is crucial in their opinion that practitioners be aware of the often dramatic improvements in the lives of C/S/Xs that result from being listened to and treated as individuals. This also means not forcing a trauma-related diagnosis or traumamodel services on individuals who are not comfortable with that approach. Again, individuals need to be listened to; while it might be useful to have theories suggested, no success is possible when one is imposed. Mental health professionals would do well to consider how survivors managed all the years their abuse histories remained hidden. The strengths of individuals, peer support, and selfhelp gain new respect when it is recognized that for many, these have been the only avenues that have been available to them for support. The incorporation of trauma theories into the design and delivery of mental health services can provide a new opportunity to consider the integration of peer-run and other community resources as equally important to professional interventions. Possibly the most important area being explored in services specific to trauma is one that C/S/Xs have also been exploring and advocating for years—that of advance directives (Backlar & McFarland, 1996; Sherman, 1994). Out of efforts to avoid retraumatizing survivors of abuse, some mental health assessments now include questions about what triggers difficulty for individuals and what they find most helpful in especially troubled moments. Perhaps this is because trauma survivors are seen as more capable of knowing themselves and what helps them, but it is a way of planning in partnership with professionals that C/S/Xs have long been aware of and supported. Many would go so far as to say that recovery is only possible where this kind of partnership is built and honored. Page 4 of 6 Module 2 Understanding the Impact of Trauma 38 HANDOUT mental health system. They do not wish to see two groups of diagnosed individuals set up in opposition to each other, one treated with concern and compassion because of their trauma histories, the other treated in coercive, inhumane ways because they are thought to have a biological illness. Roadmap to Seclusion and Restraint Free Mental Health Services NAC/SMHA Position Paper (continued) References Alexander, M.J., & Muenzenmaier, K. (1998). Trauma, addiction and recovery: Addressing public health epidemics among women with severe mental illness. In Levin, B., Blanch, A., & Jennings, A. (Eds.), Women’s mental health services: A public health perspective. Thousand Oaks, CA: Sage. Backlar, P., & McFarland, B. (1996). A survey on use of advance directives for mental health treatment in Oregon. Psychiatric Services, 47, 12. Beck, J., & Van der Kolk, B. (1987). Reports of childhood incest and current behavior of chronically hospitalized women. American Journal of Psychiatry, 144, 1474. Blanch, A., & Parrish, J. (1993). Alternatives to involuntary treatment: Results of three roundtable discussions. Rockville, MD: Center for Mental Health Services, Community Support Program. Breyer, J., et al. (1987). Childhood sexual abuse as factors in adult psychiatric illness, American Journal of Psychiatry, 144, 1426-1427. Campbell, J. (1989). In pursuit of wellness: The Well-Being Project. Sacramento, CA: California Network of Mental Health Clients. Chamberlin, J. (1990). The ex-patients’ movement: where we’ve been and where we’re going. Journal of Mind and Behavior, 11(3-4), 323-336. Craine, L., Henson, C., Colliver, J., & MacLean, D. (1988). Prevalence of a history of sexual abuse among female psychiatric patients in a State hospital system. Hospital and Community Psychiatry, 39 (3), 300- 304. Fisher, D. (1994). A new vision of healing as constructed by people with psychiatric disabilities working as mental health providers. Psychosocial Rehabilitation Journal, 19(3), 67-81. Harris, M. (1994) Modifications in service delivery and clinical treatment for women diagnosed with severe mental illness who are also survivors of sexual abuse trauma. Journal of Mental Health Administration, 21, 4. Kalinowski, C., & Penney, D. (1998). Empowerment and women’s mental health services. In Levin, B., Blanch, A., & Jennings, A. (Eds.), Women’s mental health services: A public health perspective. Thousand Oaks, CA: Sage. Page 5 of 6 Module 2 Understanding the Impact of Trauma 39 HANDOUT Given the dominance of the medical or biological model of mental illness in the field at this time, C/S/Xs are eager to use what is effective from the framework of trauma survival. A great deal of difference could be made in the lives of individuals if this growing body of information were used to support holistic and hopeful views of what is happening to them and what is possible for their futures. As one C/S/X put it, perhaps the “Decade of the Brain” could give way to the “Decade of Recovery”—recovery only being possible when all aspects of a person’s development in context are given equal value, and a spectrum of healing possibilities are offered as real choices. Roadmap to Seclusion and Restraint Free Mental Health Services NAC/SMHA Position Paper (continued) Mental Health Association in New York State & New York State Office of Mental Health. (1994). Proceedings from the forum on sexual abuse survivors in the mental health system. Albany, NY: Office of Mental Health. New York State Office of Mental Health (1993). Report of the task force on restraint and seclusion. Albany, NY: Author. Penney, D.J. (1995). Essential elements of case management in managed care settings: A service recipient perspective. In L.J. Giesler (Ed.), Case management for behavioral managed care (pp. 97-113). Cincinnati, OH: National Association of Case Management. Rose, S., Peabody, C., & Stratigeas, B. (1991). Undetected abuse among intensive case management clients. Hospital and Community Psychiatry, 42, 5. Sherman, P. (1994). Advance directives for involuntary psychiatric care. Evergreen, CO: Resources for Human Services Managers. Smith, S. (1995). Restraints: Retraumatization for rape victims? Journal of Psychosocial Nursing, 33, 7. Stefan, S. (1996). Reforming the provision of mental health treatment. In Moss, K. (Ed.), Man-made medicine: Women’s health, public policy, and reform (pp. 195-218). Durham, NC: Duke University Press. Zinman, S., Harp, H., & Bead, S. (Eds.). (1987). Reaching across: Mental health clients helping each other. Sacramento, CA: California Network of Mental Health Clients. Page 6 of 6 Module 2 Understanding the Impact of Trauma 40 HANDOUT Knight, E. (1991). Self-directed rehabilitation. Empowerment, 2(7), 1-4. Roadmap to Seclusion and Restraint Free Mental Health Services Some Statistics from the Research For purposes of this document, “abuse” and “trauma” are defined as interpersonal violence in the form of sexual abuse, physical abuse, severe neglect, loss, and /or the witnessing of violence. If no one notices, listens, or helps, childhood abuse can lead in adult years to— SERIOUS MENTAL HEALTH PROBLEMS The mental health system is filled with survivors of prolonged, repeated childhood trauma. • Fifty to 70 percent of all women and a substantial number of men treated in psychiatric settings have histories of sexual or physical abuse, or both. (Carmen et al., 1984; Bryer et al., 1987; Craine et al., 1988) • As high as 81 percent of men and women in psychiatric hospitals with a variety of major mental illness diagnoses have experienced physical and/or sexual abuse. Sixty-seven percent of these men and women were abused as children. (Jacobson & Richardson, 1987) • Seventy-four percent of Maine’s Augusta Mental Health Institute patients, interviewed as class members, report histories of sexual and physical abuse. (Maine BDS, 1998) • The majority of adults diagnosed with Borderline Personality Disorder (81 percent) or Dissociative Identity Disorder (90 percent) were sexually and/or physically abused as children. (Herman et al., 1989; Ross et al., 1990) • Women molested as children are four times more at risk for Major Depression as those with no such history. They are significantly more likely to develop bulimia and chronic PTSD. (Stein et al., 1988; Root & Fallon, 1988; Sloane, 1986; Craine, 1990) • Childhood abuse can result in adult experience of shame, flashbacks, nightmares, severe anxiety, depression, alcohol and drug use, feelings of humiliation and unworthiness, ugliness, and profound terror. (Harris & Landis, 1997; Rieker & Carmen, 1986; Herman, 1992; Janoff-Bulman & Frieze, 1983; van der Kolk, 1987; Brown & Finkelhor, 1986; Rimsza, 1988) • Adults abused during childhood are: o more than twice as likely to have at least one lifetime psychiatric diagnosis o almost three times as likely to have an affective disorder o almost three times as likely to have an anxiety disorder o almost two and a half times as likely to have phobias o over ten times as likely to have a panic disorder Page 1 of 9 Module 2 Understanding the Impact of Trauma 41 HANDOUT What Can Happen to Abused Children When They Grow Up—If No One Notices, Listens, or Helps? Roadmap to Seclusion and Restraint Free Mental Health Services SUICIDE AND SELF-INJURY • There is a highly significant relationship between childhood sexual abuse and various forms of self-harm later in life, i.e., suicide attempts, cutting, and self-starving, particularly. (van der Kolk et al., 1991) • For adults and adolescents with childhood abuse histories, the risk of suicide is increased 4- to 12-fold. (Felitti et al., 1998) • Most self-injurers have childhood histories of physical or sexual abuse. Forty percent of persons who self-injure are men. (Graff & Mallin, 1967; Pattison & Kahan, 1983; Briere & Runtz, 1988) ALCOHOL AND DRUG ABUSE • Nearly 90 percent of alcoholic women were sexually abused as children or suffered severe violence at the hands of a parent. (Miller & Downs, 1993) • Up to two-thirds of both men and women in substance abuse treatment report childhood abuse or neglect. (SAMHSA CSAT, 2000) • Teenagers with alcohol problems are 21 times more likely to have been sexually abused than those without such problems. (Clark et al., 1997) • Seventy-one to 90 percent of adolescent and teenage girls and 23 to 42 percent of adolescent and teenage boys in a Maine inpatient substance abuse treatment program reported histories of childhood sexual abuse. (Rohsenow et al., 1988) • HMO adult members who had experienced multiple childhood exposures to abuse and violence had a 4- to 12-fold increased risk of alcoholism and drug abuse, and a 2- to 4fold increase in smoking. (Felitti et al., 1998) • Adults abused during childhood are more than twice as likely as those not abused during childhood to have serious substance abuse problems. (Stein et al., 1988) • Fifty-five percent of Augusta Mental Health Institute class members with a dual diagnosis of mental illness and substance abuse report histories of physical and/or sexual abuse. (Maine BDS, 1998) SERIOUS MEDICAL PROBLEMS AND HEALTH RISKS • Medical impacts of childhood abuse include head trauma, brain injury, sexually transmitted diseases, unwanted pregnancy, HIV infection, physical disabilities (back injury, orthopedic, neck, etc.) chronic pelvic pain, headaches, stomach pain, nausea, sleep disturbance, eating disorder, asthma, shortness of breath, chronic muscle tension, muscle Page 2 of 9 Module 2 Understanding the Impact of Trauma 42 HANDOUT What Can Happen (continued) o almost four times as likely to have an antisocial personality disorder (Stein et al., 1988) • Ninety-seven percent of mentally ill homeless women have experienced severe physical and/or sexual abuse. Eighty-seven percent experienced this abuse both as children and as adults. (Goodman, Johnson, Dutton, & Harris, 1997) Roadmap to Seclusion and Restraint Free Mental Health Services What Can Happen (continued) DELINQUENCY, VIOLENCE, AND CRIMINAL BEHAVIOR Reenactment of childhood victimization is the major cause of violence in our society. • Numerous-studies have documented that most violent criminals were physically or sexually abused as children. (Groth, 1979; Seghorn et al., 1987) • Over 95 percent of perpetrators who sexually abuse female children and over 80 percent of those who abuse male children, are men. Most of these men were abused themselves in childhood. (Fergusson & Mullen, 1999) • Children from violent homes are 24 times more likely to commit sexual assault than their counterparts from nonviolent homes. (Dinzinger, 1996) • Of 14 juveniles condemned to death for murder in the United States in 1987, 12 had been brutally physically abused and 5 had been sodomized by relatives as children. (Lewis et al., 1998) • A study of convicted killers reports 83.8 percent suffered severe physical and emotional abuse and 32.2 percent were sexually violated as children. (Blake et al., 1995) • Eighty-five percent of boys and girls committed to the Maine Youth Center report a history of childhood trauma. (MAYSI: Massachusetts Assessment Youth Screening Inventory Assessment, Sept. 1999) • Over 75 percent of juvenile girls identified as delinquent by courts have been sexually abused. When they run away from the abuse at home, they are often labeled as delinquent. (Calhoun et al., 1993) • Eighty percent of women in prison and jails have been victims of sexual and physical abuse. These women are far more likely to be abused while in prison. (Smith, 1998) • Without help, one-third of those abused in childhood may abuse or neglect their own children, perpetuating an intergenerational cycle of abuse. (Kaufman & Zigler, 1987) Page 3 of 9 Module 2 Understanding the Impact of Trauma 43 HANDOUT spasms, elevated blood pressure. (Prescott, 1998; Cunningham et al., 1988, Morrison, 1989; Springs & Friedrich, 1992; Walker et al., 1988) • Adults who had experienced multiple types of abuse and violence in childhood compared to those who had not, had a 2- to 4-fold increase in smoking, poor self-rated health, 50+ sexual intercourse partners, sexually transmitted disease, a higher rate of physical inactivity, and severe obesity. (Felitti et al., 1998) • A major HMO study reports adverse childhood exposures showed a relationship with the presence of adult diseases, including ischemic heart disease, cancer, chronic lung disease, skeletal fractures, and liver disease. (Felitti et al., 1998) • Research reveals severe and prolonged childhood sexual abuse to underlie damage to the brain structure, resulting in impaired memory, dissociation, and symptoms of PTSD. (Briere, 1997; van der Kolk, 1996; Perry, 1994) Roadmap to Seclusion and Restraint Free Mental Health Services What Can Happen (continued) SEVERE SOCIAL PROBLEMS Homelessness • Seventy percent of women living on the streets or in shelters report abuse in childhood. Over 70 percent of girls on the streets have run away to flee violence in their homes. (Goodman, 1991; Chesney-Lind & Shelden, 1998) Prostitution • Victims of child sexual abuse are at high risk of becoming prostitutes in adolescence or as adults. More than 50 percent of prostitutes were sexually abused as children. (Silbert & Pines, 1981; Bagley & Young, 1987) Poverty and Welfare • More than 40 percent of women on welfare with multiple persistent problems in leaving the welfare roles were sexually abused as children. (DeParle, 1999) • Sixty percent of housed, low-income mothers on AFDC, experienced severe childhood physical abuse and 42 percent were sexually molested as children. (Bassuk et al., 1998) Truancy, Running Away, Risky Sexual Behavior • Childhood abuse has been correlated with increased adolescent and young adult truancy, running away, and risky sexual behavior. (Briere, 1997) REVICTIMIZATION Predators look for weak or vulnerable people. Having been abused as a child—especially having been sexually abused, makes one vulnerable to being revictimized. • Women who are sexually abused during childhood were 2.4 times more likely to be revictimized as adults as women who were not sexually abused. (Wyatt et al., 1992) • Sixty-eight percent of women with childhood history of incest reported incidents of rape or attempted rape after age 14 compared to 38 percent of a random sample. (Russell, 1986) • Girls who experience violence in childhood are three to four times as likely to be victims of rape. (Browne, 1992) • Childhood sexual assaults are associated with increased risk of adult assaults of both a physical and sexual nature, whereas childhood physical assaults, by contrast, were not related to adult victimization experiences. (Newman et al., 1998) Page 4 of 9 Module 2 Understanding the Impact of Trauma 44 HANDOUT DEVELOPMENTAL OR PHYSICAL DISABILITIES • Violence is a significant causal factor in 10 to 25 percent of all developmental disabilities. (Sobsey, 1994; Valenti-Hein & Schwartz, 1995) • Three to 6 percent of all children will have some degree of permanent disability as a result of abuse. (Sobsey, 1994; Valenti-Hein & Schwartz, 1995) • Between 20 and 50 percent of abused children suffer mild to severe brain damage. (Rose & Hardman, 1981) Roadmap to Seclusion and Restraint Free Mental Health Services What Can Happen (continued) References SERIOUS MENTAL HEALTH PROBLEMS Bryer, J.B., Nelson, B., Miller, J.B., & Krol, P. (1987). Childhood sexual and physical abuse as factors in adult psychiatric illness. American Journal of Psychiatry, 144, 1426-1430. Carmen, E., Rieker, P., & Mills, T. (1984). Victims of violence and psychiatric illness. American Journal of Psychiatry, 141(3). Craine, L.S., Henson, C.E., Colliver, J.A., et al. (1988). Prevalence of a history of sexual abuse among female psychiatric patients in a State hospital system. Hospital and Community Psychiatry, 39, 300-304. Jacobson, A., & Richardson, B. (1987). Assault experiences of 100 psychiatric inpatients: Evidence of the need for routine inquiry. American Journal of Psychiatry, 144, 908-913. Augusta Mental Health Institute. (1988). Consent decree class member assessment. Augusta: Maine Department of Mental Health, Mental Retardation and Substance Abuse Services. Herman, J, Perry, C., & van der Kolk, B. (1989). Childhood trauma in Borderline Personality Disorder. American Journal of Psychiatry, 164, 490-495. Ross, C., Miller, S., Reagor, P., Bjornson, L., Fraser, G., & Anderson, G. (1990). Structured interview data on 102 cases of Multiple Personality Disorder from four centers. Journal of Psychiatry, 147, 596-601. Stein, J.A., Golding, J.M., Siegel, J.M., Burnam, M.A., & Sorenson, S.B. (1988). Long-term psychological sequelae of child sexual abuse: The Los Angeles Epidemiologic Catchment Area Study. In G.E. Wyatt & G.J. Powell (Eds.), Lasting effects of child sexual abuse. (Sage Focus Ed., Vol. 100, pp.135-154). Newbury Park, CA; Sage. Root, M,, & Fallon. (1989). The Incidence of victimization experiences in a bulimic sample. Journal of Interpersonal Violence, 4, 90-100. Sloane, G., & Leichner, P. (1986). Is there a relationship between sexual abuse or incest and eating disorders? Canadian Journal of Psychiatry, 31, 656-660. Craine, P. Cited by Gondolf, E.W. (1990). Psychiatric responses to family violence: Identifying and confronting neglected danger. Lexington, MA: Lexington Books. Harris, M., & Landis. (Eds.). (1997). Sexual abuse in the lives of women diagnosed with serious mental illness. Netherlands: Harwood Academic Publishers. Page 5 of 9 Module 2 Understanding the Impact of Trauma 45 HANDOUT • Twice as many women with a history of incest as women without such a history are victims of domestic violence, and twice as many also report unwanted sexual advances by an unrelated authority figure. (Russell, 1986) • Victims of father-daughter incest are four times more likely than non-incest victims to be asked to pose for pornography. (Russell, 1986) Roadmap to Seclusion and Restraint Free Mental Health Services What Can Happen (continued) Herman, J. (1992). Trauma and recovery: The aftermath of violence—From domestic abuse to political terror. New York: Basic Books. Janoff-Bulman, R., & Frieze, I.H. (1983). A theoretical perspective for understanding reactions to victimization. Journal of Social Issues, 39(2), 1-17. van der Kolk, B.A. (Ed.). (1987). Psychological trauma. Washington, DC: American Psychiatric Press. Brown, A., & Finkelhor, D. (1986). Impact of child sexual abuse: A review of the literature. Psychological Bulletin, 99, 66-77. Rimsza, M.E., Berg, R.A., & Locke, C. (1988). Sexual abuse: Somatic and emotional reactions. Child Abuse and Neglect, 12(2), 201-8. Goodman, L., Johnson, M., Dutton, M.A., & Harris, M. (1997). Prevalence and impact of sexual and physical abuse. In M. Harris & Landis. (Eds.), Sexual abuse in the lives of women diagnosed with serious mental illness. Netherlands: Harwood Academic Publishers. SUICIDE AND SELF-INJURY van der Kolk, B.A., Perry, J.C., & Herman, J.L. (1991). Childhood origins of self-destructive behavior. American Journal of Psychiatry. 148, 1665-1671. Felitti, V.J., Anda, R.F., Nordenberg, D., Williamson, D.F., Spitz, A.M., Edwards, V., Koss, M.P., & Marks, J.S. (1998). Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: The Adverse Childhood Experiences (ACE) Study. American Journal of Preventive Medicine, 14, 245-258. Graff, H., & Mallin, R. (1967). The syndrome of the wrist cutter. American Journal of Psychiatry, 12A(1), 36-42. Pattison, E.M., & Kahan, J. (1983). The deliberate self-harm syndrome. American Journal of Psychiatry, 140(7), 867-872. Briere, J., & Runtz, M. (1988). Post sexual abuse trauma. In G.E. Wyatt & G.J. Powell (Eds.), Lasting effects of child sexual abuse. Newbury Park, CA: Sage. ALCOHOL AND DRUG ABUSE Miller, B., & Downs, W. (1993). Journal of Studies in Alcohol, Suppl. No. 11:109-117. Center for Substance Abuse Treatment. (2000). Substance abuse treatment for persons with child abuse and neglect issues. Treatment Improvement Protocol (TIP) Series, No. 36. (DHHS Publication No. (SMA) 00-3357). Washington, DC: U.S. Government Printing Office Clark, H.W., McClanahan, T.M., & Sees, K.L. (1997). Cultural aspects of adolescent addiction and treatment. Valparaaiso University Law Review, 31(2). Page 6 of 9 Module 2 Understanding the Impact of Trauma 46 HANDOUT Rieker, P.P., & Carmen, E.H. (1986). The victim-to-patient process: The disconfirmation and transformation of abuse. American Journal of Orthopsychiatry, 56(3). Roadmap to Seclusion and Restraint Free Mental Health Services What Can Happen (continued) Felitti, V.J., Anda, R.F., Nordenberg, D., Williamson, D.F., Spitz, A.M., Edwards, V., Koss, M.P., & Marks, J.S. (1998). Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: The Adverse Childhood Experiences (ACE) Study. American Journal of Preventive Medicine, 14, 245-258. Stein, J.A., Golding, J.M., Siegel, J.M., Burnam, M.A., & Sorenson, S.B. (1988). Long-term psychological sequelae of child sexual abuse: The Los Angeles Epidemiologic Catchment Area Study. In G.E. Wyatt & G.J. Powell (Eds.), Lasting effects of child sexual abuse. (Sage Focus Ed., Vol. 100, pp.135-154). Newbury Park, CA; Sage. Augusta Mental Health Institute. (1988). Consent decree class member assessment. Augusta: Maine Department of Mental Health, Mental Retardation and Substance Abuse Services. SERIOUS MEDICAL PROBLEMS Prescott, L. (1988). Women emerging in the wake of violence. Los Angeles: Prototype Systems Change Center. Cunningham, J., Pearce, T., & Pearce, P. (1988). Childhood sexual abuse and medical complaints in adult women. Journal of Interpersonal Violence, 3, 131-144. Morrison, J. (1989). Childhood sexual histories of women with somatization disorder. American Journal of Psychiatry, 146, 239-241. Springs, F., & Friedrich, W. (1993). Health risk behaviors and medical sequelae of childhood sexual abuse. Mayo Clinic Proceedings. Walker, E., Katon, W., Harrop-Griffiths, J., Holm, I., Russo, J., & Hickok, L (1988). Relationship of chronic pelvic pain to psychiatric diagnosis and childhood sexual abuse. American Journal of Psychiatry, 145, 75-80. Felitti, V.J., Anda, R.F., Nordenberg, D., Williamson, D.F., Spitz, A.M., Edwards, V., Koss, M.P., & Marks, J.S. (1998). Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: The Adverse Childhood Experiences (ACE) Study. American Journal of Preventive Medicine, 14, 245-258. Briere, J. (1997). Child abuse trauma: Theory and tTreatment of the lasting effects. Newbury Park, CA: Sage. van der Kolk, B. (1996). The body keeps the score: Approaches to the psychobiology of posttraumatic stress disorder. In Van der Kolk et al. (Eds.), Traumatic stress: The effects of overwhelming experience on mind, body, and dociety. Guilford Press. Perry. (1994). Biological and neurobehavioral studies of Borderline Personality Disorder. In K. Silk (Ed.) Progress in psychiatry, No. 45. American Psychiatric Press. Page 7 of 9 Module 2 Understanding the Impact of Trauma 47 HANDOUT Rohsenow, D.J., Corbett, R., & Devine, D. (1988). Chemical Dependency Treatment Program, Mid-Maine Medical Center, Waterville, ME: Molested as children: A hidden contribution to substance abuse? Journal of Substance Abuse Treatment, 5, 13-18. Roadmap to Seclusion and Restraint Free Mental Health Services What Can Happen (continued) Groth, A.N. (1979). Men who rape: The psychology of the offender. New York: Plenum. Seghorn, T.K., Prentky, R.A., & Boucher, R.J. (1987). Childhood sexual abuse in the lives of sexually aggressive offenders. Journal of American Academy of Child and Adolescent Psychiatry, 26(2):262-267. Fergusson, D., & Mullen, P. (1999). Childhood sexual abuse: An evidence-based perspective. Newbury Park, CA: Sage. Dinzinger, S. (1996). The real war on crime: The report of the National Criminal Justice Commission. New York: Harper. Lewis, D., Pincus, J., Bard, B., et al. (1988). Neuropsychiatric psychoeducational and family characteristics of 14 juveniles condemned to death in the United States. American Journal of Psychiatry, 145, 584-589. Blake, B., Pincus, J.H., & Buckner, C. (1995). Neurologic abnormalities in murderers. Neurology, 45, 1641-1647. MAYSI Massachusetts Assessment Youth Screening Inventory Assessment. September 1999 Calhoun, G., Jurgens,J., & Chen, F. (1993). The neophyte female delinquent: A review of the literature. Adolescence, 28, 461-471. Smith, B. (1998). An end to silence: Women prisoners’ handbook on identifying and addressing sexual misconduct. National Women’s Law Center. Kaufman. J., & Zigler, E. (1987). Do abused children become abusive parents? American Journal of Orthopsychiatry, 57(2). DEVELOPMENTAL OR PHYSICAL DISABILITIES Sobsey, D. (1994). Violence and abuse in the lives of people with disabilities: The end of silent acceptance? Baltimore: Paul Brookes. Valenti-Hein, D., & Schwartz, L. (1995). The sexual abuse interview for those with developmental disabilities. Santa Barbara, CA: James Stanfield. Rose, E., & Hardman, M.L. (1981). The abused mentally retarded child. Education and Training of the Mentally Retarded, 16(2), 114-118. SEVERE SOCIAL PROBLEMS Homelessness Goodman, L.A. (1991). The prevalence of abuse among homeless and housed poor mothers: A comparison study. American Journal of Orthopsychiatry, 61(4), 489-500. Chesney-Lind & Shelden. (1998, December). What to do about girls? Promising perspectives and effective programs. ICCA Journal. Page 8 of 9 Module 2 Understanding the Impact of Trauma 48 HANDOUT DELINQUENCY, VIOLENCE, AND CRIMINAL BEHAVIOR Roadmap to Seclusion and Restraint Free Mental Health Services What Can Happen (continued) Silbert, M.H. & Pines, A.M. (1981). Sexual child abuse as an antecedent to prostitution. Child Abuse and Neglect, 5(4), 407-411. Bagley, C., & Young, L. (1987). Juvenile prostitution and child sexual abuse: A controlled study. Canadian Journal of Community Mental Health, 6, 5-26. Poverty and Welfare DeParle, J. (1999, November 28). Life after welfare. The New York Times. Bassuk, E.L., Buckner, J.C., Perloff, J.N., & Bassuk, S.S. (1998). Prevalence of mental health and substance use disorders among homeless and low-income housed mothers. American Journal of Psychiatry, 155(11), 11. Truancy, Running Away, Risky Sexual Behavior Briere, J. (1997). Child abuse trauma: Theory and treatment of the lasting effects. Newbury Park, CA: Sage. REVICTIMIZATION Wyatt, G.E., Guthrie, D., & Notgrass, C.M. (1992). Differential effects of women’s child sexual abuse and subsequent sexual revictimization. Journal of Consulting and Clinical Psychology, 60, 167-173. Russell, D.E.H. (1986). The secret trauma: Incest in the lives of girls and women. New York: Basic Books. Browne, A. (1992). Violence against women: Relevance for medical practitioners. Council on Scientific Affairs, American Medical Association report. Journal of American Medical Association, 257, 23. Newmann, J.P., Greenley, D., Sweeney, J.K., & Van Dien, G. (1998). Abuse histories, severe mental illness, and the cost of care. In B.L. Levin, A.K. Blanch, & A. Jennings (Eds.), Women’s mental health services: A public health perspective (pp. 279-308). Newbury Park, CA:Sage. These references were prepared by the Office of Trauma Services, Department of Behavioral and Developmental Services, 40 State House Station, Augusta, ME 04333. Phone: 207-287-4250 TTY: 207-287-2000 Fax: 207-287-7571 E-mail: Ann.Jennings@state.me.us January, 2001 Page 9 of 9 Module 2 Understanding the Impact of Trauma 49 HANDOUT Prostitution Roadmap to Seclusion and Restraint Free Mental Health Services Some Common Reactions to Trauma Physical Reactions Nervous energy, jitters, muscle tension Mental Reactions Emotional Reactions Changes in the way you think about yourself Fear, inability to feel safe Upset stomach Rapid heart rate Dizziness Lack of energy, fatigue Teeth grinding Sadness, grief, depression Changes in the way you think about the world Guilt Inability to enjoy anything Becoming confrontational and aggressive Change in eating habits Loss or gain in weight Loss of trust Restlessness Lessened awareness, disconnection from yourself (dissociation) Loss of self-esteem Feeling helpless Difficulty concentrating Intrusive images Easily startled Avoiding places or situations Numbness, lack of feelings Heightened awareness of your surroundings (hypervigilance) Difficulty making decisions Becoming withdrawn or isolated from others Anger, irritability Changes in the way you think about other people Poor attention or memory problems Behavioral Reactions Increase or decrease in sexual activity Emotional distance from others Intense or extreme feelings Feeling chronically empty Blunted, then extreme, feelings Module 2 Understanding the Impact of Trauma 50 HANDOUT by Mary S. Gilbert, Ph.D. Roadmap to Seclusion and Restraint Free Mental Health Services Trauma Assessment for DMH Facilities/Vendors This form is a guide to gathering information with clients about a possible trauma history. It is recommended for use as part of the intake assessment for all DMH clients in all settings (inpatient, outpatient, emergency/crisis, day treatment, etc.). It should be used in conjunction with the De-Escalation Form. After clinical review, information obtained should be incorporated into the client’s treatment plan. 1. Do you have a history of physical abuse (e.g., hit, punched, slapped, kicked, strangled, burned, threatened with object or weapon, etc.)? Yes___ No___ Don’t Know ___ If yes, in childhood? ___ adolescence? ___ adulthood? ___ at present? ___ By whom? stranger ___ acquaintance ___ partner/spouse ___ parents ___ other family member ___ ritual abuse ___ 2. Do you have a history of sexual abuse (e.g., unwanted kissing, hugging, touching, nudity, attempted or completed intercourse)? Yes___ No___ Don’t Know ___ If yes, in childhood? ___ adolescence? ___ adulthood? ___ at present? ___ Page 1 of 3 51 HANDOUT Commonwealth of Massachusetts Department of Mental Health Roadmap to Seclusion and Restraint Free Mental Health Services Trauma Assessment (continued) stranger ___ acquaintance ___ parents ___ other family member ___ partner/spouse ___ 3. Have you ever been raped? Yes___ No___ Don’t Know ___ If yes, in childhood? ___ adolescence? ___ adulthood? ___ recently? ___ By whom? stranger ___ acquaintance ___ partner/spouse ___ parents ___ other family member ___ ritual abuse ___ 4. Have you experienced an acute trauma such as a natural disaster, severe accident, or threat to life, or have you witnessed a death or violence to someone else, or been a victim of a crime? Yes__ No __ Don’t Know ___ If yes, at what age and circumstances? ________________________________________________________________________ ________________________________________________________________________ Page 2 of 3 52 HANDOUT By whom? Roadmap to Seclusion and Restraint Free Mental Health Services Trauma Assessment (continued) Yes ___ No___ If yes, describe. ________________________________________________________________________ ________________________________________________________________________ Please incorporate the information obtained in the trauma assessment into the treatment plan for this client. Page 3 of 3 53 HANDOUT 5. If yes to any of the above, are you experiencing flashbacks, nightmares, insomnia, numbness, confusion, memory loss, self injury, extreme fearfulness or terror, etc., related to the trauma? Roadmap to Seclusion and Restraint Free Mental Health Services Guidelines for De-Escalation Preference Form 1. The De-Escalation Preference Form should be completed within 24 to 72 hours of admission. 2. It is preferable that this form not be included in the admission packet or completed along with admission forms because most clients are not emotionally prepared to focus on these questions during that time. 3. The form may be administered during an individual interview or a group session. Even though the material is sensitive, it is often helpful to administer it in a group session. Persons sitting together at a table may feel more comfortable talking about the information while they answer the questions and may also encourage others to complete the form more thoughtfully. A group setting offers a more informational-type gathering as opposed to a clinical setting. If given during a group session, there should be several staff members present to help individuals who need support or assistance with reading, understanding, or answering the questions. 4. Careful consideration should be given as to who will administer the form. Ideally, it should always be the same person, someone who is both familiar and comfortable with the material. A consumer advocate employed by the hospital would be ideal, because peers are often less threatening than professional staff. It must be understood by the person administering the form that the form is not presented as treatment or therapy, but as helpful information that can be included in the treatment plan. 5. To effectively provide information, persons administering the form should be knowledgeable about the material. For example, it is helpful for a person to learn about additional efforts that are being made at the hospital to reduce seclusion and restraint and how this information will be used as part of that process. These persons should be able to answer questions about the request for sensitive information. For example, it is important that the information about touching at the hospital be presented as promoting appropriate, not inappropriate, touching. 6. When patients are not communicative enough to answer a question, they may be provided an opportunity to answer the question at another time, if they so desire. 7. Patients must always be given the option to decline answering a question. 8. The form, when completed, should be placed in the patient’s file where it is known and used effectively by staff. 9. Persons served should be told how the form is to be used. They should be given a copy of the form to keep. It may be helpful for the hospital to collect data on answers to these questions to 54 HANDOUT by Gayle Bluebird Roadmap to Seclusion and Restraint Free Mental Health Services identify patterns and trends that are important to patients. De-Escalation Form for DMH Facilities/Vendors This form is a guide to gathering information with clients for the development of strategies to de-escalate agitation and distress so that restraint and seclusion can be averted. It should be used in conjunction with the Trauma Assessment Form. It is recommended for use in all inpatient facilities, psychiatric emergency rooms, crisis stabilization and other diversion units, when clinically indicated. Indications include a past history or likelihood of loss of control of aggressive impulses. After clinical review, the information obtained should be incorporated into the treatment plan for this client. 1. It is helpful for us to be aware of the things that can help you feel better when you’re having a hard time. Have any of the following ever worked for you? We may not be able to offer all these alternatives, but I’d like us to work together to figure out how we can best help you while you’re here. o voluntary time out in your room o exercise o listening to music o using ice on your body o voluntary time out in quiet room o deep breathing exercises o reading a newspaper/book o putting hands under cold water o sitting by the nurses station o going for a walk with staff o watching TV o lying down with cold facecloth o talking with another consumer o taking a hot shower o pacing the halls o wrapping up in a blanket o talking with staff o other (please list) o writing in a diary/journal o calling a friend _________________________________ o having your hand held _________________________________ o calling your therapist _________________________________ o having a hug o pounding some clay o punching a pillow Page 1 of 4 55 HANDOUT Commonwealth of Massachusetts Department of Mental Health Roadmap to Seclusion and Restraint Free Mental Health Services De-Escalation Form (continued) Would you like them to come and visit you? (Y/N) Can we assist in this process? (Y/N) If you are in a position where you are not able to give us information to further your treatment, do we have your permission to call and speak to ______________________________ (name) _________________ (phone)? (Y/N) If you agree that we can call to get information, sign below: Client signature _______________________ Date ______________ Witness _____________________________ Date ______________ 3. What are some of the things that make it more difficult for you when you’re already upset? Are there particular “triggers” that you know will cause you to escalate? o being touched o being isolated o bedroom door open o people in uniform o particular time of day (when?) o time of the year (when?) o loud noise o yelling o not having control/input (explain) o other (please list) Page 2 of 4 56 HANDOUT 2. Is there a person who has been helpful to you when you’re upset? (Y/N) Roadmap to Seclusion and Restraint Free Mental Health Services De-Escalation Form (continued) Physically/Mechanically Chemically When? Where? What happened? 5. If you are escalating or in danger of hurting yourself or someone else, we may need to use a physical, mechanical, or chemical restraint. We may not be able to offer you all of these alternatives, but if it becomes necessary, we’d like to know your preferences. o Quiet room o Seclusion o Physical hold o Safety coat o Papoose board o 3-point restraint Face up? ____ Face down? ____ o 4-point restraint Face up? ____ Face down? ____ o Chemical restraint 6. Do you have a preference regarding the gender of staff assigned to you during and immediately after a restraint? o Women staff o Men staff o No preference 7. Is there anything that would be helpful to you during a restraint? Please describe. _______________________________________________________________________ _______________________________________________________________________ Page 3 of 4 57 HANDOUT 4. Have you ever been restrained in a hospital or other setting—for example, in a crisis stabilization unit or at home? Roadmap to Seclusion and Restraint Free Mental Health Services De-Escalation Form (continued) ________________________________________________________________________ ________________________________________________________________________ 9. We do room checks here to make sure you are okay at night. We are trying to make these room checks as nonintrusive as possible. Is there anything that would make room checks more comfortable for you? _______________________________________________________________________ _______________________________________________________________________ Please incorporate the information obtained in the de-escalation form into the treatment plan for this client. Page 4 of 4 Module 2 Understanding the Impact of Trauma 58 HANDOUT 8. We may be required to administer medication if physical restraints aren’t calming you down. In this case, we would like to know what medications have been especially helpful to you. Please describe. Roadmap to Seclusion and Restraint Free Mental Health Services Things You Can Do Every Day to Help Yourself Feel Better There are many things that happen every day that can cause you to feel ill, uncomfortable, upset, anxious, or irritated. You will want to do things to help yourself feel better as quickly as possible, without doing anything that has negative consequences, for example, drinking, committing crimes, hurting yourself, risking your life, or eating lots of junk food. • Read through the following list. Check off the ideas that appeal to you and give each of them a try when you need to help yourself feel better. Make a list of the ones you find to be most useful, along with those you have successfully used in the past, and hang the list in a prominent place—like on your refrigerator door—as a reminder at times when you need to comfort yourself. Use these techniques whenever you are having a hard time or as a special treat to yourself. • Do something fun or creative, something you really enjoy, like crafts, needlework, painting, drawing, woodworking, making a sculpture, reading fiction, comics, mystery novels, or inspirational writings, doing crossword or jigsaw puzzles, playing a game, taking some photographs, going fishing, going to a movie or other community event, or gardening. • Get some exercise. Exercise is a great way to help yourself feel better while improving your overall stamina and health. The right exercise can even be fun. • Write something. Writing can help you feel better. You can keep lists, record dreams, respond to questions, and explore your feelings. All ways are correct. Don’t worry about how well you write. It’s not important. It is only for you. Writing about the trauma or traumatic events also helps a lot. It allows you to safely process the emotions you are experiencing. It tells your mind that you are taking care of the situation and helps to relieve the difficult symptoms you may be experiencing. Keep your writings in a safe place where others cannot read them. Share them only with people you feel comfortable with. You may even want to write a letter to the person or people who have treated you badly, telling them how it affected you, and not send the letter. • Use your spiritual resources. Spiritual resources and making use of these resources vary from person to person. For some people it means praying, going to church, or reaching out to a member of the clergy. For others it is meditating or reading affirmations and other kinds of inspirational materials. It may include rituals and ceremonies—whatever feels right to you. Spiritual work does not necessarily occur within the bounds of an organized religion. Remember, you can be spiritual without being religious. • Do something routine. When you don’t feel well, it helps to do something “normal”— the kind of thing you do every day or often, things that are part of your routine, like Page 1 of 3 Module 2 Understanding the Impact of Trauma 59 HANDOUT Excerpt from Dealing With the Effects of Trauma: A Self-Help Guide Roadmap to Seclusion and Restraint Free Mental Health Services Things You Can Do (continued) • Wear something that makes you feel good. Everybody has certain clothes or jewelry that they enjoy wearing. These are the things to wear when you need to comfort yourself. • Get some little things done. It always helps you feel better if you accomplish something, even if it is a very small thing. Think of some easy things to do that don’t take much time. Then do them. Here are some ideas: clean out one drawer, put five pictures in a photo album, dust a book case, read a page in a favorite book, do a load of laundry, cook yourself something healthful, send someone a card. • Learn something new. Think about a topic that you are interested in but have never explored. Find some information on it in the library. Check it out on the Internet. Go to a class. Look at something in a new way. Read a favorite saying, poem, or piece of scripture, and see if you can find new meaning in it. • Do a reality check. Checking in on what is really going on rather than responding to your initial “gut reaction” can be very helpful. For instance, if you come in the house and loud music is playing, it may trigger the thinking that someone is playing the music just to annoy you. The initial reaction is to get really angry with them. That would make both of you feel awful. A reality check gives the person playing the loud music a chance to look at what is really going on. Perhaps the person playing the music thought you wouldn’t be in until later and took advantage of the opportunity to play loud music. If you would call upstairs and ask him to turn down the music so you could rest, he probably would say, “Sure!” It helps if you can stop yourself from jumping to conclusions before you check the facts. • Be present in the moment. This is often referred to as mindfulness. Many of us spend so much time focusing on the future or thinking about the past that we miss out on fully experiencing what is going on in the present. Making a conscious effort to focus your attention on what you are doing right now and what is happening around you can help you feel better. Look around at nature. Feel the weather. Look at the sky when it is filled with stars. • Stare at something pretty or something that has special meaning for you. Stop what you are doing and take a long, close look at a flower, a leaf, a plant, the sky, a work of art, a souvenir from an adventure, a picture of a loved one, or a picture of yourself. Notice how much better you feel after doing this. • Play with children in your family or with a pet. Romping in the grass with a dog, petting a kitten, reading a story to a child, rocking a baby, and similar activities have a calming effect which translates into feeling better. Page 2 of 3 Module 2 Understanding the Impact of Trauma 60 HANDOUT taking a shower, washing your hair, making yourself a sandwich, calling a friend or family member, making your bed, walking the dog, or getting gas in the car. Roadmap to Seclusion and Restraint Free Mental Health Services Things You Can Do (continued) • Expose yourself to something that smells good to you. Many people have discovered fragrances that help them feel good. Sometimes a bouquet of fragrant flowers or the smell of fresh baked bread will help you feel better. • Listen to music. Pay attention to your sense of hearing by pampering yourself with delightful music you really enjoy. Libraries often have records and tapes available for loan. If you enjoy music, make it an essential part of every day. • Make music. Making music is also a good way to help yourself feel better. Drums and other kinds of musical instruments are popular ways of relieving tension and increasing well-being. Perhaps you have an instrument that you enjoy playing, like a harmonica, kazoo, penny whistle, or guitar. • Sing. Singing helps. It fills your lungs with fresh air and makes you feel better. Sing to yourself. Sing at the top of your lungs. Sing when you are driving your car. Sing when you are in the shower. Sing for the fun of it. Sing along with favorite records, tapes, compact discs, or the radio. Sing the favorite songs you remember from your childhood. Perhaps you can think of some other things you could do that would help you feel better. Source: U.S. Department of Health and Human Services. (2002). Dealing With the Effects of Trauma: A Self-Help Guide. DHHS Pub. No. SMA-3717. Rockville, MD: Center for Mental Health Services, Substance Abuse and Mental Health Services Administration. www.mentalhealth.org/ publications/allpubs/SMA-3717/things.asp Page 3 of 3 Module 2 Understanding the Impact of Trauma 61 HANDOUT • Do a relaxation exercise. There are many good books available that describe relaxation exercises. Try them to discover which ones you prefer. Practice them daily. Use them whenever you need to help yourself feel better. Relaxation tapes that feature relaxing music or nature sounds are available. Just listening for 10 minutes can help you feel better. • Take a warm bath. This may sound simplistic, but it helps. If you are lucky enough to have access to a Jacuzzi or hot tub, it’s even better. Warm water is relaxing and healing. Roadmap to Seclusion and Restraint Free Mental Health Services Grounding Techniques Grounding refers to methods for stopping the re-experiencing of a trauma, or related symptom, and getting back to the here and now. Often those with a trauma history experience such symptoms as flashbacks (a sudden, vivid memory of the event) or dissociation (various ways of disconnecting with traumatic experiences mentally, emotionally, or both by disconnecting in current reality). These symptoms happen against the consumer’s will and feel out of control. A staff member can often help ground consumers by asking questions or directing them based on the suggestions below. Learning and applying grounding techniques are very important parts of consumers gaining some control over these symptoms. When a consumer reports/appears unusually anxious or vulnerable, is nonresponsive, or is reacting in other ways suggestive of re-experiencing a trauma: As an overall guide, mainly try to help the consumer focus on something in one or more of the five senses in the present: sight, smell, hearing, taste, or touch. • Crucial to maintain visual contact with environmental cues. o Make sure the consumer is in a well-lit area—stay out of dark or dim areas, or turn on the lights. Recommend a night-light. (Beware of nighttime—darkness, fatigue, and a history of evening sexual abuse are often problems.) o Don’t allow hiding in dark or confined places, even if s/he feels frightened or disorganized. Make sure eyes remain open. o Assist the consumer in looking at and focusing on things around her/him. For example, describe the color of the walls or carpet. Or, if s/he has a favorite object, like a stuffed animal, give that to her/him and assist the person in noticing how it looks, feels, and smells. (Focusing on familiar, comforting objects helps the consumer remain in or return to the present.) o Present previously developed flashcards that assist the consumer in recognizing s/he is only experiencing a flashback, not reality. (Statements on the cards need to come from the consumer.) These can also be placed on a mirror, for example, so you can direct the consumer’s attention to them when necessary. • Maintain personal contact with the consumer. o Say that person’s name and identify yourself. Tell him/her where s/he is and the full date. Keep repeating this in reassuring, but normal voice tones (not soft or rhythmic). Tell the consumer you know s/he is frightened, but s/he is safe. Ask the consumer to look at your face and try to make direct, focused eye contact with the consumer. If frightened by eye contact, redirect to a different part of your body, like hair or shirt. Ask the consumer to move her/his eyes so as not to go into a daze. Be firm and direct. Page 1 of 2 Module 2 Understanding the Impact of Trauma 62 HANDOUT by Mary S. Gilbert, Ph.D. Roadmap to Seclusion and Restraint Free Mental Health Services Grounding Techniques (continued) Source: Mary S. Gilbert, 2001. Partially adapted from Rebuilding Shattered Lives by Chu; and Courtois & Briere. Page 2 of 2 Module 2 Understanding the Impact of Trauma 63 HANDOUT o Remind the consumer of significant others, such as a child or partner, if appropriate. (These interpersonal connections can be very grounding.) • Direct the consumer to focus on a physical sensation. o Ask the consumer to start naming what s/he sees in the room, or what color her/his shirt is, etc. o Suggest s/he feels own weight, or the chair s/he is sitting on, or notices how his/her feet feel on the floor. Help the consumer take a walk (try stamping feet) around the room and notice all that s/he sees and feels. (These help remind the consumer that s/he is in reality here and now, not a part of a memory or reliving the event.) o Recommend the consumer get in the “in control” body posture. • Focus on the present. o If not alarmed by it, help consumer look in the mirror and see that s/he is an adult, not a child in a traumatic situation. o Call the consumer’s attention to a calendar and/or a clock and help him/her figure out what day and time it is. (Again, this can help the consumer realize s/he is not back in the midst of the trauma and return to the present.) o Ask the consumer questions about the present, like what TV shows s/he likes, or plans for the weekend, or the first thing s/he wants to do when s/he gets home. o Ask the consumer about her/his interests or activities, such as recreational activities or a pet. Don’t choose anything emotionally charged or related to his/her trauma. o Direct and assist in writing or drawing about something positive. (These activities can often be soothing.) • After a period of loss of control: o Help reassure consumer and normalize event/current situation. o If consumer is able, assist with relaxation techniques to help consumer further calm down. o Try to identify what causes the consumer’s symptoms. Attempt to determine any possible external triggers. Help the consumer identify preceding internal emotional events or states. When possible and reasonable, help the consumer work out how to avoid their triggers until better able to ground her/himself and cope more effectively. o Determine body postures that accompany feelings of being flooded and/or overwhelmed, as well as in control/adult body postures. Help the consumer describe and practice the “in control” posture. o Plan new ways to attempt to cope with stress in the future (e.g., redirecting, transitional object, relaxation, etc.). o Develop a crisis response plan for the next occurrence. Plan a simple strategy and note what techniques worked best with consumer. Roadmap to Seclusion and Restraint Free Mental Health Services WEB SITES RELATED TO TRAUMA www.childtrauma.org The Child Trauma Academy is a nonprofit organization based in Houston, TX. The mission of the Academy is to help improve the lives of traumatized and maltreated children and their families. The Academy encourages innovations in clinical practice, program development, and public policy. Many individuals and organizations share the Academy’s vision and hopes for children; it is a central operating principle of the Academy to seek out, support, and work side by side with these individuals and organizations—both public and private. www.sidran.org The Sidran Institute is a leading provider of traumatic stress education, publications, and resources. It is a national nonprofit organization dedicated to supporting people with traumatic stress conditions, providing education and training on treating and managing traumatic stress, providing trauma-related advocacy, and informing the public on issues related to traumatic stress. Sidran is also a leading publisher of books about traumatic stress. David Baldwin’s Trauma Information Pages—www.trauma-pages.com These pages focus primarily on emotional trauma and traumatic stress, including PTSD (Post-Traumatic Stress Disorder), whether following individual traumatic experience(s) or a large-scale disaster. New information is added to this site about once a month. The purpose of this site is to provide information for clinicians and researchers in the traumatic stress field. Baldwin’s interests include both clinical and research aspects of trauma responses and their resolution. For example, 1. What goes on biologically in the brain during traumatic experience and its resolution? 2. Which psychotherapeutic procedures are most effective for which patients with traumatic symptoms, and why? 3. How can we best measure clinical efficacy and treatment outcome for trauma survivor populations? Supportive resources supplement the more academic or research information of interest to clinicians, researchers, and students. Module 2 Understanding the Impact of Trauma 64 HANDOUT www.rossinst.com The Colin A. Ross Institute was formed to further the understanding of psychological trauma and its consequences by providing educational services, research, and clinical treatment of trauma-based disorders. Roadmap to Seclusion and Restraint Free Mental Health Services RESOURCES ON SECONDARY TRAUMA Located in South Windsor, CT, the Traumatic Stress Institute has a dual mission: (1) to promote understanding and improve treatment of traumatic stress and (2) to promote psychology as a discipline and profession. This Institute has developed some very useful resources for professionals struggling with secondary traumatic stress. The Traumatic Stress Institute Center for Adult and Adolescent Psychotherapy 22 Morgan Farms Drive South Windsor, CT 06074 (860) 644-2541 www.tsicaap.com The Traumatology Institute The Traumatology Institute is the home of psychologist Dr. Charles Figley, a pioneer in the field of compassion fatigue or secondary trauma. Dr. Figley is the founding editor of the Journal of Traumatic Stress and has written many articles and books on compassion fatigue or secondary traumatic stress. The Traumatology Institute School of Social Work Florida State University 2407C University Center Tallahassee, FL 32306-2570 (850) 644-4751 mailer.fsu.edu/~cfigley/TraumatologyInstitute.html International Society for Traumatic Stress Studies (ISTSS) ISTSS, founded in 1985, provides a forum for the sharing of research, clinical strategies, public policy concerns, and theoretical formulations on trauma in the United States and around the world. ISTSS is dedicated to the discovery and dissemination of knowledge and to the stimulation of policy, program, and service initiatives that seek to reduce traumatic stressors and their immediate and long-term consequences. ISTSS 60 Revere Drive, Suite 500 Northbrook, IL 60062 (847) 480-9028 Fax: (847) 480-9282 www.istss.org Page 1 of 2 Module 2 Understanding the Impact of Trauma 65 HANDOUT The Traumatic Stress Institute/Center for Adult and Adolescent Psychotherapy Roadmap to Seclusion and Restraint Free Mental Health Services Resources on Secondary Trauma (continued) APSAC’s mission is to ensure that everyone affected by child maltreatment receives the best possible professional response. This organization has many useful scholarly and clinical materials focused primarily at the professional audience. Nonetheless, caregivers working with abused or maltreated children may find this a useful resource. APSAC P.O. Box 30669 Charleston, SC 29417 (843) 764-2905 Toll-free: (877) 402-7722 Fax: (803) 753-9823 www.apsac.org The National Center for PTSD The National Center for PTSD is a program of the U.S. Department of Veterans Affairs and carries out a broad range of activities in research, training, and public information. The primary focus of the Center has been combat veterans and their families. Over the last few years, however, this focus has been expanded. The Center has many useful programs, activities, and resources for anyone interested in the effects of traumatic stressors. The PILOTS database is an electronic index to the worldwide literature on PTSD and other mental health sequelae of exposure to traumatic events. It is available to Internet users through the courtesy of Dartmouth College, whose computer facilities serve as host to the database. No account or password is required, and there is no charge for using the PILOTS database. The National Center for PTSD www.ncptsd.org Page 2 of 2 Module 2 Understanding the Impact of Trauma 66 HANDOUT American Professional Society on the Abuse of Children (APSAC) Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 2 - REFERENCES Blanch, A., & Parrish, J. (1993). Alternatives to involuntary treatment: Results of three roundtable discussions. Bethesda, MD: National Institute of Mental Health. Bolen, J.D. (1993). The impact of sexual abuse on women’s health. Psychiatric Annals, 23(8), 446-453. Brennen, K. (1997). Adult survivors of childhood sexual abuse in the mental health system: Involuntary intervention, retraumatization and staff training. Tampa, FL: Department of Community Health. Cahill, C., Stuart, G., Laraia, M., & Arana, G. (1991). Inpatient management of violent behavior: Nursing prevention and intervention. Issues in Mental Health Nursing, 12, 239-252. Chu, J.A. (1998). Rebuilding shattered lives: Treating complex post-traumatic and dissociative disorders. New York: Wiley. Copeland, M.E. (2002). Dealing with the effects of trauma. DHHS Publication No. SMA-3717. Rockville, MD: U.S. Department of Health and Human Services. Doob, D. (1992). Female sexual abuse survivors as patients: Avoiding retraumatization. Archives of Psychiatric Nursing, 6, 245-251. Flynn, H. (1996, July). Mental health policy issues related to the use of seclusion and restraint with adult survivors of childhood sexual abuse. Paper presented at the Florida Mental Health Institute, Tampa, FL. Gilbert, M.S. (2002). Materials from presentation at Pine Rest Hospital, Grand Rapids, MI. Goren, S., Abraham, I., & Doyle, N. (1996) Reducing violence in a child psychiatric hospital through planned organizational change. Journal of Child and Adolescent Psychiatric Nursing, 9(2), 27-36. Hammond, W. (1996. January 7). Facing sexual abuse: State mental health system changing treatment methods. Gazette Reporter. Harris, D., & Morrison, E. (1995). Managing violence without coercion. Archives of Psychiatric Nursing, 9(2), 203-210. Jennings, A. (1994). Imposing stigma from within: Retraumatizing the victim. Resources, 6(3) 11-15. Joint Commission on Accreditation of Healthcare Organizations (JCAHO). (1995). Accreditation manual for mental health, chemical dependency, and mental retardation/developmental disability services. Vol.1, Standards; Vol. 2, Scoring guidelines. Oakbrook Terrace, IL: Author. Joint Commission on Accreditation of Healthcare Organizations (JCAHO). (1999). Testimony at Senate hearings. Page 1 of 2 Module 2 Understanding the Impact of Trauma 67 HANDOUT Bills, L. (1996). Abuse: Connecting the past with present symptoms. Office of Mental Health Quarterly, 2, 13-15. Roadmap to Seclusion and Restraint Free Mental Health Services Module 2 - References (continued) Maine Office of Trauma Services. (2001). What can happen to abused children when they grow up if no one notices, listens, or helps? Augusta, ME: Maine Department of Mental Health, Mental Retardation, and Substance Abuse Services. Maine Trauma Advisory Groups. (1997). In their own words: Trauma survivors and professionals they trust tell what hurts, what helps, and what is needed for trauma services. Augusta, ME: Maine Department of Mental Health, Mental Retardation, and Substance Abuse Services. Massachusetts Department of Mental Health. (1995). Trauma assessment for Department of Mental Health facilities/vendors. Boston: Author. Massachusetts Department of Mental Health (1996) Clinical guidelines: Department of Mental Health clients with a history of trauma. Boston: Author. National Association of Consumer/Survivor Mental Health Administrators. (1998). Trauma and abuse histories: Connections to diagnosis of mental illness, implications for policy and service delivery. Unpublished position paper. National Association of Consumer/Survivor Mental Health Administrators. (2000). In Our Own Voices Survey. Unpublished. National Association of State Mental Health Program Directors (NASMHPD). (1998). Position statement on services and supports to trauma survivors. Alexandria, VA: Author. Ridgely, S., & Van den Berg, P. (1997. April). Women and coercion: Commitment, involuntary treatment, and restraint. Tampa, FL: Louis de la Parte Florida Mental Health Institute, Department of Mental Health Law and Policy. U.S. Department of Health and Human Services (DHHS). (2002). Dealing with the effects of trauma: A self-help guide. Rockville, MD: Author. Online at www.mentalhealth.samhsa.gov. Page 2 of 2 Module 2 Understanding the Impact of Trauma 68 HANDOUT Kabat-Zinn, J. (1991). Full catastrophe living: Using the wisdom of your body and mind to face stress, pain, and illness. New York: Delta. Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 3 Creating Cultural Change 1 Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 3 Creating Cultural Change “The hospital’s culture dictates whether, in what circumstances, and how often seclusion and restraint interventions are used.” —Ira Burnim, Bazelon Center for Mental Health Law (Networks, Summer 1999) “It’s not possible to solve a problem with the same consciousness that created it.” —Albert Einstein Learning Objectives Upon completion of this module the participant will be able to: • Understand seclusion and restraint from a primary, secondary, and tertiary public health prevention model. • Identify key components of successful programs that are eliminating seclusion and restraint. • Outline the key elements of cultural change, including intrapersonal change, interpersonal change, and system change. • Define safety from both a service recipient perspective and service provider perspective. • Describe what consumers say would be helpful in preventing the use of seclusion and restraint. Module 3 Creating Cultural Change 2 Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 3: CREATING CULTURAL CHANGE Background for the Facilitators. . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Presentation (3 hours) . . . . . . . . . . . . . . . . . . . . . . . . . . Exercise: “Flowers Are Red” (10 minutes). . . . . . . . . . . Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Pennsylvania: A Model for Reform. . . . . . . . . . . . . . . . . . Video: Leading the Way: Toward a Seclusion and . . . . . Restraint Free Environment (17.5 minutes) Cultural Change. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Exercise: “My Organizational Culture Currently Is…” . . . (30 minutes) Exercise: “People With a Mental Health Diagnosis Are…” (15 minutes) In Our Own Voices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Exercise: What Would Have Been Helpful to Hear . . . . . (15 minutes) Handouts for Participants . . . . . . . . . . . . . . . . . . . . . . . “Flowers Are Red” . . . . . . . . . . . . . . . . . . . . . . . . . . . . “My Organizational Culture Currently Is…”. . . . . . . . . . . . NASMHPD Review of Literature Related to Safety and Use of Seclusion and Restraint What Would Have Been Helpful in Preventing the Use . . . of Seclusion and Restraints for You? What Would Have Been Helpful for You to Hear? . . . . . . . What Other Options May Have Been Beneficial?. . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Module 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 . 11 . 12 . 16 . 16 . . . . . . 23 . . . . . . 27 . . . . . . 29 . . . . . . 30 . . . . . . 31 . . . . . . . . . . . . . . . . . . . . . 35 . 35 . 37 . 38 . . . . . . . 40 . . . . . . . 41 . . . . . . . 42 . . . . . . . 43 Creating Cultural Change 3 Roadmap to Seclusion and Restraint Free Mental Health Services Overview “Seclusion and restraint are not treatment; they reflect treatment failure.” —Charles Curie, former Pennsylvania Deputy Secretary for Mental Health and Substance Abuse (Pennsylvania Department of Public Welfare, 2001) Changing the culture of violence and coercion in mental health settings is crucial to the elimination of seclusion and restraint. A working definition of cultural change is • Lasting structural and social changes (within an organization or set of linked organizations), PLUS • Lasting changes to the shared ways of thinking, beliefs, values, procedures, and relationships of the stakeholders (Allison Scammel, 1997) An organization’s culture is determined by its policies and rules, both written and unwritten, and by the acceptance of these policies and rules by key stakeholders. Cultural change often requires a re-examination not only of the organization’s policies and rules, but of values, beliefs, and the relationships between all stakeholders (administrators, direct care staff, and consumers). This re-examination is often difficult because of the long-standing stigma and discrimination associated with mental illness. The National Association of State Mental Health Program Directors (NASMHPD) has issued a report on the issue of the use of seclusion and restraint. It states in part, “this issue is about how mental health systems treat the people they serve. If the goals of the public mental health system are to treat people with dignity, respect, and mutuality, to protect people’s rights, to provide the best quality care possible, and to assist people in their recovery, any use of seclusion and restraint must be rigorously scrutinized...In addition, using power to control people’s behavior or to resolve arguments can lead to escalation of conflict and can ultimately result in serious injury or even death.” (NASMHPD, 1999) Rodney Copeland, former Vermont Commissioner, also has expressed strong views on the need for cultural change within the mental health system. According to Copeland, “Recent national exposés revealed alarming numbers of youth and adults with emotional disorders, mental illnesses, and/or developmental disabilities dying as a result of seclusion and restraint in treatment programs…I believe a major part of the answer lies in the overemphasis, even dependency, in our treatment and rehabilitation practices on power, control, paternalism, and ultimately coercion. Put another way, the mental health and developmental disabilities fields have not clearly offered alternative practices to old styles of control, which can often lead to significant levels of coercion. Deliberate examination of coercive practices viewed through Module 3 Creating Cultural Change 4 BACKGROUND BACKGROUND FOR THE FACILITATORS: CREATING CULTURAL CHANGE Roadmap to Seclusion and Restraint Free Mental Health Services Will Pflueger, a consumer from Minnesota, sums it up perfectly. “The terror of confinement, the pain of restraint and the wound to my soul made me want to stay as far away from the mental health system as possible.” Ideas for Eliminating Coercion (Source: Vermont’s Vision of a Public System for Developmental and Mental Health Services Without Coercion by Rodney E. Copeland, Ph.D., Commissioner, Vermont Department of Developmental and Mental Health Services, Fall/Winter 1999-2000) • It is important that consumers have control over their own treatment and recovery. • Educate providers and hospitals on the importance of the “partnership concept” with consumers. • Separate the issues around medications that “control behavior” versus the ones that “make people feel better.” • One size does not fit all—there are unique paths to recovery. • Make full use of self-determination principles that allow citizens to take control of their system of care and support. • Make better use of each consumer’s knowledge of himself or herself. • Make full use of informal alternatives, natural supports, and family/consumer-run supports. • Emphasize prevention and public health approaches. • Adults with severe mental illness and developmental disabilities could benefit from a prevention approach. • Encourage ambitious public involvement and education for the community at large regarding natural supports. • Develop informal and, if necessary, formal systems to engage early on with citizens who have previously experienced very coercive situations in our formal systems of care. This early intervention and engagement would have the goal of preventing individuals from experiencing the formal system as they had in the past. • Once involved with the formal system, have more choice and chance to do the consumer’s own work toward recovery. • Positively address the culture of agencies regarding professional control. • Develop grievance procedures that have a strong procedural justice base. • Encourage the employment of consumers at all levels, including involuntary care settings. • Have the option of peer support and self-advocacy support coming into the formal system. Module 3 Creating Cultural Change 5 BACKGROUND the lenses of consumers in addition to scientific and clinical knowledge can assist us in the shift away from coercion to positive practices. Consumer stories of experiencing coercion are very powerful. One only has to listen briefly to hear the pervasive chilling and, in reality, killing effect coercion has on the human spirit. None of us like coercion in any of its forms applied to us. All coercion, regardless of its forms, damages and hurts.” (Copeland, 19992000, Fall-Winter) Roadmap to Seclusion and Restraint Free Mental Health Services Pennsylvania: A Model for Reform (Source: www.power2u.org/downloads/Pennsylvania_S&R_Initiative.pdf) In 1997, the Pennsylvania Department of Public Welfare instituted an aggressive program to reduce and ultimately eliminate seclusion and restraints in its nine State hospitals. Charles Curie, former Deputy Secretary of Mental Health and Substance Abuse Services, articulated the philosophy behind the change in policy: “Most of our patients are already the victims of trauma. There is no need to reinforce that trauma, or to retraumatize.” Three years later, Pennsylvania had reduced incidents of seclusion and restraint in its nine State hospitals by 74 percent, and reduced the number of hours consumers spent in seclusion and restraints by 96 percent. Its program, which includes both forensic and civil commitments, has the highest standards for seclusion and restraint in the Nation. Pennsylvania’s hospitals experienced no increase in staff injuries. In addition, its changes were implemented without any additional funds, using only existing staff and resources. Charles Curie noted that preliminary data indicates that the number of both consumer and staff injuries has decreased. By July 2000, Pennsylvania reported that one State mental hospital had not used seclusion for over 20 months. Another had used neither seclusion nor restraints for 8 of the previous 12 months. Three hospitals had been seclusion and restraint free for one or more consecutive months and others were approaching zero use. In October 2000, Pennsylvania’s Seclusion and Restraint Reduction Initiative received the prestigious Harvard University Innovations in American Government Award. Pennsylvania began its reform project by carefully tracking the use of seclusion and restraint, and then used that 1997 data as its baseline to measure improvements. A workgroup of practicing hospital clinicians set about developing new policies and procedures, goals, strategies, and monitoring systems to design and implement the new approach. Key among these goals was developing a new philosophy of care, one that identified seclusion and restraint as treatment failure and restricted it to emergency use only. Module 3 Creating Cultural Change 6 BACKGROUND • Train staff on the importance and value of communication skills and recovery. • Encourage self-advocates to articulate clearly where and when paternalism and control take place. • Find examples in agencies where best practices are being followed and actively disseminate those findings to others. • Follow the strengths-based approach with children and give children a real voice in individualized plans. Roadmap to Seclusion and Restraint Free Mental Health Services Also critical was changing the culture of State hospitals. Pennsylvania did this by requiring open public access to seclusion and restraint data, by creating competition among hospitals to reduce seclusion and restraint, and by giving awards and acknowledgments for improvement. Key elements of Pennsylvania’s seclusion and restraint reduction policy: • Seclusion and restraints must be the intervention of last resort. • Seclusion and restraint are exceptional and extreme practices for any consumer. They are not to be used as a substitute for treatment, nor as punishment, nor for the convenience of the staff. • Seclusion and restraint are safety measures, not therapeutic techniques, which should be implemented in a careful manner. • Staff shall include consumer strengths and cultural competence to prevent incidents of seclusion and restraint. • Staff must work with the consumer to end seclusion and restraint as quickly as possible. • A physician must order seclusion and restraint. • Orders are limited to 1 hour and require a physician to physically assess the consumer within 30 minutes. • The consumer and family are considered part of the treatment team. • The consumer advocate is the spokesperson for the consumer (if the consumer desires it) and is involved in care and treatment. • Consumers being restrained cannot be left alone. • Chemical restraints are prohibited. • The treatment plan includes specific interventions to avoid seclusion and restraint. • Consumers and staff must be debriefed after every incident, and treatment plans must be revised. • Staff must be trained in de-escalation techniques. • Consumer status must be reviewed prior to utilizing seclusion and restraint. Voluntary patients who did not agree to these procedures must be involuntarily committed before these procedures may be initiated. Module 3 Creating Cultural Change 7 BACKGROUND Mental health officials cite a number of innovations that were critical to the success of the program. Among them were the following: • Computerized data collection and analysis • Strategies for organizational change • Staff training in crisis prevention and intervention • Risk assessment and treatment planning tools • Consumer debriefing methods • Recovery-based treatment models • Adequate number of staff Roadmap to Seclusion and Restraint Free Mental Health Services For more information, please contact: Office of Mental Health and Substance Abuse Services Bureau of Hospital Operations Beechmont Building, First Floor Harrisburg, PA 17110 (717) 705-8152 Cultural Change In order for sustainable cultural change to occur around the issue of seclusion and restraint, all of the stakeholders must be present at the table for the discussion. No component or subset of a system IS the system…the parts interact to give it life. No one is blaming anyone for how things have been. Consumers and staff are hoping to create new ways of being together, which requires both consumers and staff to change how they interact with each other. This manual approaches cultural change from three levels: intrapersonal, interpersonal, and system change. Intrapersonal change occurs within the individual mind or self and is reinforced by the Personal Take Action Challenges. Interpersonal change involves relationships between persons, e.g., consumers and staff. System change focuses on structural changes by addressing issues of policy, of local, State, and Federal legislation, and by implementing Workplace Take Action Challenges. In Our Own Voices In December 2000, the National Association of Consumer/Survivor Mental Health Administrators (NAC/SMHA) developed and sent out a survey to people diagnosed with mental illnesses to better understand the experience of people who had been secluded and/or restrained. The results from the survey laid the groundwork for this training manual. People diagnosed with mental illnesses were asked to respond to four questions. 1. Have you ever been in seclusion or restraints? 2. What would have been helpful in preventing the use of seclusion or restraints for you? 3. Some people suggest that “talking to them” helps. What would you have wanted to hear? 4. What other options may have been beneficial? Module 3 Creating Cultural Change 8 BACKGROUND • Leaders of the hospital, clinical department heads, and ward leaders are accountable at all times for every phase of a seclusion and restraint procedure. Accountability is demonstrated as a component of the hospital's "performance improvement" index and in staff competency evaluations. • Data regarding the use of seclusion and restraint are made available to consumer and family organizations and government officials. Roadmap to Seclusion and Restraint Free Mental Health Services What would have been helpful in preventing the use of seclusion or restraints for you? “I don’t know what caused me being put in seclusion. I have asked for 26 years because I NEVER want to cause that again.” What would have been helpful? “Not being processed like cattle.” What would you have wanted to hear? “What was happening to me would end soon. It would not last forever—hope—some explaining what was happening would be helpful.” What other options may have been beneficial? “To be able to cry, chemical restraints often prevent this.” “Have someone sit with me for a while.” The results from the survey may elicit a wide array of strong responses from staff members. Be sure to allow plenty of time for processing all feelings—including defensiveness, anger, sadness, and guilt. Remember, putting people diagnosed with mental illnesses in seclusion or restraints is traumatic for the staff as well. This section provides an opportunity for staff to hear the consumer’s perspective and process their own trauma around seclusion and restraint. Module 3 Creating Cultural Change 9 BACKGROUND Seventy-two percent of those responding reported being secluded or restrained. Here are a few of the responses, some of which are heart wrenching. “I think…putting a patient in restraints makes them feel like an animal or trapped bear in a trap.” Roadmap to Seclusion and Restraint Free Mental Health Services Welcome participants, review names, and make sure everyone has a nametag or name tent. It may be helpful to provide a quick review of Module 2: Understanding the Impact of Trauma. Ask each participant to share one of the Take Action Challenges from Module 2 and report on their progress. Go over the learning objectives. Learning Objectives Upon completion of this module the participant will be able to : • Understand seclusion and restraint from a primary, secondary, and tertiary public health prevention model • Identify key components of successful programs that are eliminating seclusion and restraint • Outline the key elements of cultural change, including intrapersonal change, interpersonal change, and system change • Define safety from both a service recipient perspective and service provider perspective • Describe what consumers say would be helpful in preventing the use of seclusion and restraint Module 3 Creating Cultural Change 10 PRESENTATION PRESENTATION Roadmap to Seclusion and Restraint Free Mental Health Services “Flowers Are Red” OBJECTIVE: Identify how behaviors in a culture become established. PROCESS: Distribute the handout “Flowers are Red.” Give the participants time to read the poem. Facilitate a discussion. DISCUSSION QUESTIONS: Think about what it might take to change this little boy’s image of flowers at this point in his life. • What would he have to change? • How would the system have to change? • What would the teacher have to understand to help the little boy? MATERIALS REQUIRED: “Flowers Are Red” handout APPROXIMATE TIME REQUIRED: 10 minutes Module 3 Creating Cultural Change 11 PRESENTATION Exercise/Discussion—Module 3 Roadmap to Seclusion and Restraint Free Mental Health Services A working definition of cultural change • Lasting structural and social changes (within an organization or set of linked organizations), PLUS • Lasting changes to the shared ways of thinking, beliefs, values, procedures, and relationships of the stakeholders Treatment of Consumers In a fundamental way, the issue of seclusion and restraint is about how mental health systems treat the people they serve. (National Association of State Mental Health Program Directors) • Any intervention that recreates aspects of previous traumatic experiences or that uses Module 3 Creating Cultural Change 12 PRESENTATION Overview • If the goals of the public mental health system are to treat people with dignity, respect, and mutuality, to protect people’s rights, to provide the best quality care possible, and to assist people in their recovery, any use of seclusion and restraint must be rigorously scrutinized (NASMHPD, 1999). • Historically, seclusion and restraint techniques have been a part of inpatient psychiatric care since the Middle Ages and are ingrained in the habits, organization, and culture of mental health facilities (Pennsylvania Department of Public Welfare, 2001). Roadmap to Seclusion and Restraint Free Mental Health Services Seclusion and Restraint are not evidence-based practices • The research on the use of seclusion and restraint with children or adults provides evidence that the experience may actually cause additional trauma and harm (Finke, 2001). • There is no research to support a theoretical foundation for the use of seclusion with children (Finke, 2001). • 30 years of evidence demonstrates that seclusion does not add to therapeutic goals and is in fact a method to control the environment instead of a therapeutic intervention (Finke, 2001). • “Seclusion and restraint are persistent national issues, even though we have known with certainty since the 1960s that their use is harmful, indeed life threatening at times.” Rodney Copeland – former Vermont Commissioner Seclusion and Restraint are not evidence-based practices – pg 2 • Most episodes of seclusion and restraint occur within the first few days after admission, and the majority of incidents occur with a very small number of individuals (NASMHPD). • Our goal is to improve the system, rather than placing blame on any one group for how it currently exists. • Using a Public Health Model of Prevention may be helpful for thinking about eliminating the use of seclusion and restraint. Module 3 Creating Cultural Change 13 PRESENTATION power to punish or is harmful to the individual involved is unacceptable. Roadmap to Seclusion and Restraint Free Mental Health Services 1. The selection and use of the least possible restriction consistent with the purpose of the intervention 2. Establishing a culture that minimizes the occurrence of events that might lead to the use of seclusion and restraint 3. A culture that emphasizes the importance of valuing what consumers say about what contributes to a safe environment 4. Identifying and resolving conflicts early, before they escalate A Public Health Model that eliminates the use of seclusion and restraint would support: 5. Training in techniques of early intervention for all staff 6. Policies and procedures that only allow safe use of seclusion and restraint on those rare occasions when it is required to maintain safety 7. Staff and consumers being fully debriefed after any use of seclusion and restraint and the information obtained would be used to prevent further episodes • Depending on the context in which a particular tool is used, it may fit into more than one category. For example, a Wellness Recovery Action Plan (WRAP) could be used as primary, secondary, or tertiary prevention. Module 3 Creating Cultural Change 14 PRESENTATION A Public Health Model that eliminates the use of seclusion and restraint would support: Roadmap to Seclusion and Restraint Free Mental Health Services Preventing and reducing the need for seclusion and restraint • In the context of seclusion and restraint, primary prevention would include consumer empowerment, utilizing resiliency and strengths-based models, changing physical environments, an organizational philosophy that articulates nonviolence in policy, procedures, and practice, etc. Secondary Prevention Using the least restrictive methods possible • In the context of seclusion and restraint, secondary prevention would include use of a comfort room, a consumer referring to their WRAP, de-escalation techniques, consumer support groups, etc. Module 3 Creating Cultural Change 15 PRESENTATION Primary Prevention Roadmap to Seclusion and Restraint Free Mental Health Services Intervention to reverse or prevent negative consequences • In the context of seclusion and restraint, tertiary prevention would include exploring the precipitating factors that caused the seclusion or restraint, facilitating a debriefing session with changes to the treatment plan, using only face up restraints if they are necessary at all, and never leaving a consumer alone while she/he is in seclusion or restraint, etc. Pennsylvania: A Model for Reform For this segment, you may wish to use the videotape Leading the Way: Toward a Seclusion and Restraint Free Environment by the Pennsylvania Office of Mental Health and Substance Abuse. It is 17.5 minutes long. To obtain this video, please contact Robert Davis, M.D. at robedavis@state.pa.us or at Department of Public Welfare, Commonwealth of Pennsylvania, 502 Health and Welfare Building, Harrisburg, PA 17105. The information for this segment was obtained from Pennsylvania’s Web site, www.dpw.state. pa.us. It is also available in Leading the Way Toward a Seclusion and Restraint Free Environment: Pennsylvania’s Success Story by Bonnie Hardenstine, Director of Performance Improvement and Forensic Services, Bureau of Hospital Operations, Office of Mental Health and Substance Abuse Services, Department of Public Welfare, Commonwealth of Pennsylvania, 2001. Module 3 Creating Cultural Change 16 PRESENTATION Tertiary Prevention Roadmap to Seclusion and Restraint Free Mental Health Services 1997 – Pennsylvania Department of Public Welfare’s Office of Mental Health and Substance Abuse Services (OMHSAS) announced that all nine State mental hospitals would actively pursue the elimination of seclusion and restraint. Treatment Failure Seclusion and restraint reflects treatment failure Module 3 Creating Cultural Change 17 PRESENTATION Pennsylvania Model Roadmap to Seclusion and Restraint Free Mental Health Services Pennsylvania Model Success • Computerized data collection and analysis • Organizational change strategies • Medications that target aggressive behavior • Staff crisis prevention and intervention training • Risk assessment and treatment planning tools • Debriefing methods • Recovery-based treatment models • Adequate number of staff • Essential to the initiative's success were computerized data collection and analysis, organizational change strategies, medications that target aggressive behavior, staff crisis prevention and intervention training programs, risk assessment and treatment planning tools, consumer debriefing methods, recovery-based treatment models, and an adequate number of trained staff. • Today, Pennsylvania has a seclusion and restraint policy that exceeds all national standards. The policy enhanced physician involvement and accountability, increased consumer safety, and limited use of seclusion and restraint to use as a last resort in situations involving imminent serious harm. The policy includes the following requirements: Module 3 Creating Cultural Change 18 PRESENTATION • Stressing that seclusion and restraint techniques reflect treatment failure, the Office of Mental Health and Substance Abuse Services (OMHSAS) first tracked the use of these methods throughout the State mental hospital system. With data in hand, a workgroup composed of practicing hospital clinicians developed a new policy that limited seclusion and restraint use to emergency situations only. • The Pennsylvania model policy established clear goals, policies, strategies, and monitoring systems to reduce the use of these dangerous and restrictive measures. Roadmap to Seclusion and Restraint Free Mental Health Services • A physician must order seclusion or restraint. • Orders are limited to one hour and require a physician to physically assess the consumer within 30 minutes. • Consumers being restrained cannot be left alone. • Chemical restraints are prohibited. • Consumers and staff must be debriefed after every incident, and treatment plans must be revised. • Data regarding use of seclusion and restraint are made available to consumer and family organizations and government officials. Staff Involvement Staff members encourage consumers to creatively resolve or avoid factors that cause or escalate aggressive and selfinjurious behavior • Staff members are encouraged to pay close attention to the factors that cause or escalate aggressive and self-injurious behavior. They encourage consumers to creatively resolve or avoid these factors and to develop alternative coping strategies that reinforce consumer dignity and self-control and foster recovery and successful community reintegration. Module 3 Creating Cultural Change 19 PRESENTATION Pennsylvania Model Policy Roadmap to Seclusion and Restraint Free Mental Health Services Entire initiative used current staff and had no increased costs associated with it • Pennsylvania's reduction initiative relied solely on existing staff and resources—without increased cost to taxpayers. Outcomes of the Pennsylvania Model • Since 1997, the combined incidents of seclusion and restraint were reduced by 90 percent, and the hours of use fell by 95 percent. (See PowerPoint charts below.) By July 2000, one State mental hospital had not used seclusion for over 20 months. Restraint Usage per 1000 Patient Days through 2/28/01 Module 3 Creating Cultural Change 20 PRESENTATION Cost Effective Roadmap to Seclusion and Restraint Free Mental Health Services Public Access to Data Public access to data created healthy competition among State hospitals to continue further reduction of seclusion and restraint • This proactive initiative has fostered healthy competition among State hospitals to aggressively continue further reduction of seclusion and restraint use. • “The rate of work-related injuries is higher in mental health than in the construction industry, and more staff injuries occur during the implementation of seclusion and restraint than occur from unexpected assaults” (NASMHPD, 1999). Module 3 Creating Cultural Change 21 PRESENTATION Seclusion Usage per 1000 Patient Days to 2/28/01 Roadmap to Seclusion and Restraint Free Mental Health Services DECREASED STAFF INJURIES! • The new policy has not put staff at greater risk. In fact, injury rates due to consumer assaults decreased with seclusion and restraint reduction. • The initiative has produced a cultural change conducive to expedited consumer recovery, hospital discharge, and community reintegration. Seclusion and restraint are no longer considered the acceptable response to aggressive or self-injurious consumer behavior. Cultural Change and Consumer Recovery Cultural changes created quicker consumer recovery, hospital discharges, and community reintegration. • Since the policy actively involves consumers in their overall treatment, it has encouraged much stronger partnerships among consumers and caregivers. Module 3 Creating Cultural Change 22 PRESENTATION Decreased Staff Injuries Roadmap to Seclusion and Restraint Free Mental Health Services Stronger partnerships among consumers and caregivers Cultural Change • No component or subset of a system IS the system…the parts interact to give it life. No one is blaming anyone for how things have been. Consumers and staff are hoping to create new ways of being together, which requires both consumers and staff to change how they interact with each other. • Thinking about systems is important to understand the context of the whole. • To understand the system completely, all voices, including consumers, family members, facility management, and direct care staff need to be present • The challenge before all of us is how to create sustainable cultural changes in the mental health system. • Francis Meehan (1982) outlined a social justice movement model that identifies three levels of change that we will use as a framework for thinking about overall systems change. Social Justice Levels of Change Intrapersonal – occurring within the individual mind or self Interpersonal – involving relationships between persons Systems/Cultural Change Module 3 Creating Cultural Change 23 PRESENTATION Partnerships Among Consumers and Caregivers Roadmap to Seclusion and Restraint Free Mental Health Services Gandhi Quote “Be the change you want to see in others.” Mahatma Gandhi Interpersonal Change • Webster’s Dictionary defines this type of change as “involving relationships between persons.” • This training focuses on interpersonal change by offering you many opportunities to build bridges between consumers and staff, change your day-to-day work practices, and implement your Take Action Challenges. Module 3 Creating Cultural Change 24 PRESENTATION Intrapersonal Change • Webster’s Dictionary defines this type of change as “occurring within the individual mind or self.” • This training focuses on intrapersonal change by asking you to respond in your journal so that you become even more aware of your attitudes, gifts, and blind spots. • The following quote from Gandhi illustrates intrapersonal change. Roadmap to Seclusion and Restraint Free Mental Health Services Defining Culture Culture: Who we are and how we do things Module 3 Creating Cultural Change 25 PRESENTATION Systems/Cultural Change • Webster’s Dictionary defines this type of change as “something arranged in a definite pattern of organization.” • This training focuses on how to make structural/system changes by addressing issues of policy; addressing local, State, and Federal legislation; and implementing Workplace Take Action Challenges. • The primary interest is in making cultural changes that are sustainable and are adopted at every level in the institution. Roadmap to Seclusion and Restraint Free Mental Health Services • Norms • Climate • Organizational Support • Values • Norms—expected and accepted behavior for both staff and consumers. • Climate—includes a sense of community, shared vision, and positive outlook. These social atmosphere factors enable constructive individual and collective change. • Organizational support—the system of informal and formal structures, policies, and procedures that maintain the culture. • Values—heartfelt beliefs about the appropriate way to approach mental health issues. • To create a change in culture, it is necessary to first identify the limiting beliefs that are holding the group back. Then identify some more positive and enhancing beliefs and start building and reinforcing those. • The following exercise will assist in identifying underlying beliefs. o Let’s first start with a picture of where your organization is right now—before proposing any changes. o Remember, all organizations have things they do well and things they could improve on. Module 3 Creating Cultural Change 26 PRESENTATION Cultural Building Blocks Roadmap to Seclusion and Restraint Free Mental Health Services “My Organizational Culture Currently Is…” OBJECTIVE: Participants will identify current ecology, relationships, and leadership in their organization. PROCESS: Divide the class into groups of six. Assign one group ecology, one group relationships, and one group leadership. If there are more than three groups, two groups can work separately on the same topic. All administrators need to have their own group so others can share freely. Ask them to do an evaluation (positive and negative) of how their organization currently functions around these issues as it relates to the reduction of seclusion and restraint. Have each group report back their findings. The groups may want to write key points on the board or on a flip chart. Ecology • Physical surroundings • Formal policies and rules • Resources • The unit culture • Attitudes • Cultural norms Relationships • Direct care staff peer relationships • Direct care staff to administration relationships • Direct care staff to consumer relationships • Administrative staff to consumer relationships Leadership • Inspire others to see their own potential • Foster relationship building among all • Challenge process, not people • Teach “there could be a better way” attitude • Remove barriers to possibility thinking • Be a learning organization Page 1 of 2 Module 3 Creating Cultural Change 27 PRESENTATION Exercise/Discussion—Module 3 Roadmap to Seclusion and Restraint Free Mental Health Services “My Organizational Culture Currently Is…” (continued) DISCUSSION QUESTIONS: MATERIALS REQUIRED: APPROXIMATE TIME REQUIRED: • Which of the three areas—ecology, relationships, and leadership —is most likely to support the reduction of seclusion and restraint at your facility? • Which of the three areas might struggle with these changes and why? • What works well and what is a problem related to seclusion and restraint? “My Organizational Culture Currently Is…” handout Chalk board or flip chart 30 minutes Page 2 of 2 Module 3 Creating Cultural Change 28 PRESENTATION Exercise/Discussion—Module 3 Roadmap to Seclusion and Restraint Free Mental Health Services “People With a Mental Health Diagnosis Are…” OBJECTIVE: To recognize the biases and stereotypes that impact work with consumers. PROCESS: Divide the group into pairs. In each pair, assign one person to be A and one person to be B. Person A will simply listen to B and after each response say “thank you.” Person B will say “People with a mental health diagnosis are _________” and fill in the blank. This sentence is repeated over and over. If B cannot think of anything to say, B can say the word “blank” and start over with the sentence. After a few minutes, have A and B switch roles. Facilitate a discussion. DISCUSSION QUESTIONS: • What were the common themes? • How do you think these biases and stereotypes impact working with consumers? • What was difficult about this exercise and why? MATERIALS REQUIRED: None APPROXIMATE TIME REQUIRED: 15 minutes Module 3 Creating Cultural Change 29 PRESENTATION Exercise/Discussion—Module 3 Roadmap to Seclusion and Restraint Free Mental Health Services Survey Questions 1. Have you ever been in seclusion or restraints? 2. What would have been helpful in preventing the use of seclusion or restraints for you? 3. Some people suggest that “talking to them” helps. What would you have wanted to hear? 4. What other options may be have been beneficial? • Seventy-two percent of people diagnosed with a mental illness who responded stated they had experienced seclusion or restraint. Distribute handout on “What would have been helpful in preventing the use of seclusion or restraints for you?” and discuss. • The second question asked on the NAC/SMHA survey was “What would have been helpful for you to hear?” • The following exercise will illustrate the consumer responses of what they would have liked to have heard during a stressful time. Module 3 Creating Cultural Change 30 PRESENTATION In Our Own Voices • To end this session, we want to share with you responses from consumers regarding seclusion and restraint. • The National Association of Consumer/Survivor Mental Health Administrators developed a survey to better understand the experience of seclusion and restraint. • The survey was a paper and pencil mail questionnaire that asked four questions. Roadmap to Seclusion and Restraint Free Mental Health Services What Would Have Been Helpful to Hear OBJECTIVE: Identify words and phrases that consumers would like to hear during stressful times. PROCESS: Before this module, prepare a 3x5 note card for each of the following quotes from consumers: • Let’s sit down and talk about the problem. • It’s your choice to discuss, I only have to restrain if you start hurting someone. • You are going to be OK. • We are here to help you. • Can we call someone for you? • That someone was not going to hurt me • Something gentle and kind • I’m here to listen, I’m here for you. • It will get better. • This will pass. • I won’t leave you. • What I wanted to hear was that I can get better • I would have wanted to hear I would soon feel calmer. • How can we help? • Your parents are coming. • You are all right, but your behavior is inappropriate. • I’m a person too and allowed to make mistakes • All feelings are normal. • I’m here to listen, I’m here with you. • That I was OK, that I was safe • Description of where I was and what was going on • Do you want to talk about what you are feeling? • Humor • Could I get you something? • Are you comfortable? • I can see that you are hurting. Can we talk? Page 1 of 2 Module 3 Creating Cultural Change 31 PRESENTATION Exercise/Discussion—Module 3 Roadmap to Seclusion and Restraint Free Mental Health Services What Would Have Been Helpful to Hear (continued) • I’m not sure it’s the exact words that are most important, but rather the tone of voice, body language, and the physical environment of the verbalization. The words need to be firm but kind, spoken by someone with whom the patient has had prior positive experiences. The words should include references to experiences and people that the staff has determined ahead of time will help the patient become grounded. Have participants sit in a circle. Pass out cards to participants. Have participants read their cards to the group. Discuss what feelings this exercise raised. DISCUSSION QUESTIONS: MATERIALS REQUIRED: APPROXIMATE TIME REQUIRED: • Which of these words/phrases do you currently use with consumers? • What other words/phrases have you said that have been helpful? • What are some things you have heard staff say that are not helpful? 3x5 note cards with quotes written on them Optional—PowerPoint slide with the quotes given above “What would have been helpful for you to hear?” handout 15 minutes Page 2 of 2 Module 3 Creating Cultural Change 32 PRESENTATION Exercise/Discussion—Module 3 Roadmap to Seclusion and Restraint Free Mental Health Services What Other Options May Have Been Beneficial? • • • • • • • • • • Taking a walk Physical exercise Read my Wellness Recovery Action Plan (WRAP) To be able to cry; chemical restraints often prevent this Have someone sit with me for a while Sometimes just to be heard helps Take shower or bath Draw Being able to yell A homey setting – soft chairs, drapes, pictures What Other Options May Have Been Beneficial? • • • • • • With permission, a hand on a hand, an arm around a shoulder – it is important to make contact EARLY on with someone about to “lose touch” Being allowed to have something of my own to comfort me Take time to review the file and ask questions Getting everyone’s attention off of the misbehavior and onto what caused it to happen in the first place Talking to the doctor more about the medications A big overstuffed, vibrating, heated chair with a blanket, headphones, and gentle soft music Module 3 Creating Cultural Change 33 PRESENTATION As a group, review the handout “What other options may have been beneficial?” Roadmap to Seclusion and Restraint Free Mental Health Services “…my son was to be committed to the State hospital. When the sheriff came to take him, Mark said, “I’m not going.” Instead of the sheriff putting restraints on Mark, he said, “Can I come in?” He sat down and talked to Mark for an hour. Mark finally said, “If I have to go, I’ll go.” He walked out to the car and rode in the front seat with the sheriff 250 miles to the closest State hospital. Talking, time, and patience does work.” Module 3 Creating Cultural Change 34 PRESENTATION • One survey respondent wrote the following story: Roadmap to Seclusion and Restraint Free Mental Health Services The little boy went to the first day of school He got some crayons and started to draw He put colors all over the paper For colors was what he saw And the teacher said…what are you doing young man? I’m paintin’ flowers he said She said…it’s not the time for art young man And anyway flowers are green and red There’s a time for everything young man And a way it should be done You’ve got to show concern for everyone else For you’re not the only one And she said…flowers are red young man Green leaves are green There’s no need to see flowers any other way Than the way they always have been seen But the little boy said…there are so many colors in the rainbow So many colors in the mornin’ sun So many colors in a flower and I see every one Well the teacher said… you’re sassy And you’ll paint flowers the way they are So repeat after me… And she said…Flowers are red young man Green leaves are green there’s no need to see flowers any other way Than the way they always have been seen But the little boy said… There are so many colors in the rainbow So many colors in the morning sun So many colors in a flower And I see every one Page 1 of 2 Module 3 Creating Cultural Change 35 HANDOUT Flowers Are Red Roadmap to Seclusion and Restraint Free Mental Health Services Flowers Are Red (continued) —Anonymous Page 2 of 2 Module 3 Creating Cultural Change 36 HANDOUT The teacher put him in a corner She said…it’s for your own good And you won’t come out Til you get it right And all responding like you should Well finally he got lonely Frightened thoughts filled his head And he went up to the teacher And this is what he said…and he said Flowers are red, green leaves are green There’s no need to see flowers any other way Than the way they always have been seen Time went by like it always does and they moved to another town And the little boy went to another school And this is what he found The teacher there was smilin’ She said…painting should be fun And there are so many colors in a flower So let’s use every one But that little boy painted flowers In neat rows of green and red And when the teachers asked him why This is what he said…and he said Flowers are red, green leaves are green There’s no need to see flowers any other way Than the way they always have been seen Roadmap to Seclusion and Restraint Free Mental Health Services My Organizational Culture Currently Is… Gaps Ecology Physical surroundings Formal policies and rules Resources Unit culture Attitudes Cultural norms Relationships Direct care staff peer relationships Direct care staff to administration relationships Direct care staff to consumer relationships Administrative staff to consumer relationships Leadership Inspire others to see their own potential Foster relationship building among all Challenge the process, not people Teach “there could be a better way” attitude Remove barriers to possibility thinking Be a learning organization Module 3 Creating Cultural Change 37 HANDOUT Strengths Roadmap to Seclusion and Restraint Free Mental Health Services Factors Related to Reducing the Use of Seclusion and Restraint • Employing a public health model that stresses prevention and early intervention. • Sensitizing staff to the power differential that exists between themselves and the people they serve in order to prevent the misuse of power. Experiential training and training that involves service recipients can be particularly useful in this regard. • Implementing individualized treatment plans that are mutually determined by service recipients and staff, and that effectively emphasize the individual recipient's assessment of what works and what doesn't. • Using clearly defined clinical interventions, including clinical algorithms. • Making sure that multiple treatment options are available at all times. • Involving families and others (with permission of the service recipient) who have helpful information about what has worked and what hasn't in the past. • Teaching skills of self-monitoring and self-control as part of the rehabilitation/recovery process. • Ensuring that both staff and service recipients have access to mechanisms for resolving disputes without resorting to force. • Creating a physical environment that minimizes the overstimulating conditions that may lead to conflict or agitation, particularly (but not exclusively) for elderly individuals. • Developing a clinical paradigm that addresses past trauma as part of the clinical picture. • Considering the use of seclusion or restraint to reflect a failure to intervene earlier, and aiming for the goal of using these interventions as close to "zero use" as possible. • Ensuring adequate ongoing staff training specific to the situation and consumers being served. Similarly, many factors were identified that contribute to an environment in which safety concerns are likely to emerge, and in which seclusion and restraint are likely to be misused. These factors include • Lack of adequate attention to safety issues and risk factors at intake. Most episodes of seclusion and restraint occur within the first few days after admission, and the majority of incidents occur with a very small number of individuals. • Lack of an organizational culture of respect. • Not believing what service recipients say; labeling people as "manipulative." • Lack of adequate attention to language accessibility and cultural uniqueness (e.g., race, gender, sexual orientation, and trauma history). • Inadequate staffing, in quantity, training or both. Inexperienced staffs are assaulted more frequently; short staffing and the use of temporary staff also increase the likelihood of violence. Page 1 of 2 Module 3 Creating Cultural Change 38 HANDOUT From NASMHPD’s 1999 Report on Reducing the Use of Seclusion and Restraint Roadmap to Seclusion and Restraint Free Mental Health Services NASMHPD’s 1999 Report (continued) Page 2 of 2 Module 3 Creating Cultural Change 39 HANDOUT • The assumption that “compliance” in and of itself is important for recovery. A culture that permits misuse or display of power, even in "small" ways (e.g., using keys to intimidate). • The assumption that “structure” and/or rules for behavior are in and of themselves therapeutic, or that they are the only mechanisms for maintaining a therapeutic milieu. • Responding to violence with violence. • Inadequate monitoring and debriefing; a culture of secrecy. • A culture in which direct care staff feel disrespected and "pass on" that disrespect to service recipients. Roadmap to Seclusion and Restraint Free Mental Health Services • • • • • • • • • • • • • • • Listening Finding good qualities and mentioning them Teaching stress management exercises Good ongoing relationship with treatment staff that involved trust and cooperation If families were regularly included in treatment teams—and really considered to be valuable sources of insight into their ill family members, then situations leading to restraints might be defused If they had given me a stick of gum to chew or something to drink If they had given me some paper and a pencil, I would have written out my thoughts Naming and hearing what you’re doing that’s inappropriate and why Stopping inside jokes that confuse people Being allowed to listen to music Snuggle in blankets If the nurses had talked to me and offered alternatives first, like applying a warm washcloth to my forehead, like holding my hands or offering reassurance, such as “you are in a safe place now.” “We are here to help you feel safe, to get away from the bad thoughts, voices, or visions.” I’m afraid of closed-in places and this is in my files. No one took time to look or even read it. All it would have taken was for someone to talk to me and HEAR what I had to say To put it in simplistic terms: knowing the patient and educating the staff. All staff members need to know the patient’s personal history, diagnosis, treatment experiences, and approaches which have been helpful in the past to avoid seclusion and restraints, i.e., avoid a one-size-fits-all response. This will necessitate a system which can more quickly involve family members and past treatment providers. Module 3 Creating Cultural Change 40 HANDOUT What would have been helpful in preventing the use of seclusion or restraints for you? Roadmap to Seclusion and Restraint Free Mental Health Services What would have been helpful for you to hear? Let’s sit down and talk about the problem It’s your choice to discuss, I only have to restrain if you start hurting someone You are going to be OK We are here to help you Can we call someone for you? That someone was not going to hurt me Something gentle and kind I’m here to listen, I’m here for you It will get better This will pass I won’t leave you What I wanted to hear was that I can get better I would have wanted to hear I would soon feel calmer How can we help? Your parents are coming You are all right, but your behavior is inappropriate I’m a person too and allowed to make mistakes All feelings are normal I’m here to listen, I’m here with you That I was OK, that I was safe Description of where I was and what was going on Do you want to talk about what you are feeling? Humor Could I get you something? Are you comfortable? I can see that you are hurting. Can we talk? I’m not sure it’s the exact words that are most important, but rather, the tone of voice, body language and the physical environment of the verbalization. The words need to be firm but kind, spoken by someone with whom the patient has had prior positive experiences. The words should include references to experiences and people that the staff has determined ahead of time will help the patient become grounded. Module 3 Creating Cultural Change 41 HANDOUT • • • • • • • • • • • • • • • • • • • • • • • • • • • Roadmap to Seclusion and Restraint Free Mental Health Services What other options may have been beneficial? • • • • • Taking a walk Physical exercise Read my WRAP plan To be able to cry; chemical restraints often prevent this Have someone sit with me for a while Sometimes just to be heard helps Take shower or bath Draw Being able to yell A homey setting—soft chairs, drapes, pictures With permission, a hand on a hand, an arm around a shoulder—it is important to make contact EARLY on with someone about to “lose touch” Being allowed to have something of my own to comfort me Take time to review the file and ask questions Getting everyone’s attention off of the misbehavior and onto what caused it to happen in the first place Talking to the doctor more about the medications A big overstuffed, vibrating, heated chair with a blanket, headphones, and gentle soft music Module 3 Creating Cultural Change 42 HANDOUT • • • • • • • • • • • Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 3 - REFERENCES Bloom, S. (1997). Creating sanctuary: Toward the evolution of sane societies. New York: Routledge. Brown, J., & Tooke, S. (1992). On the seclusion of psychiatric patients. Social Science and Medicine, 35, 711-721. Canatsey, K., & Roper, J. (1997). Removal from stimuli for crisis intervention: Using least restrictive methods to improve the quality of patient care. Issues in Mental Health Nursing, 18, 35-44. Chandler, D. & Francis, P.S. (1995). A national survey on seclusion and restraint in State psychiatric hospitals. Psychiatric Services, 46, 1026-1031. Copeland, R.E. (1999-2000, Fall/Winter). Vermont’s vision of a public system for developmental and mental health services without coercion. Burlington: Vermont Department of Developmental and Mental Health Services. Online at www.ddmhs.state.vt.us/archives/rod.pdf. Coursey, R.D., Alford, J., & Safarjan, B. (1997). Significant advances in understanding and treating serious mental illness. Professional Psychology Research and Practice, 28, 205-216. Delaney, K. (1994). Calming an escalated psychiatric milieu. Journal of Child and Adolescent Psychiatric Nursing, 7(3), 5-13. Davis, S. (2002). Autonomy versus coercion: Reconciling competing perspectives in community mental health. Community Mental Health Journal, 38, 239-250. Farber, S. (1993). Madness, heresy, and the rumor of angels: The revolt against the mental health system. Chicago: Open Court Publishing. Finke, L.M. (2001). The use of seclusion is not evidence-based practice. Journal of Child and Adolescent Psychiatric Nursing, 14(4), 186-190. Goren, S., Abraham, I., & Doyle, N. (1996). Reducing violence in a child psychiatric hospital through planned organizational change. Journal of Child and Adolescent Psychiatric Nursing, 9(2), 27-36. Holzworth, R., & Wills, C. (1999). Nurses’ judgments regarding seclusion and restraint of psychiatric patients: A social judgment analysis. Research in Nursing and Health, 22, 189-201. Johnson, M. (1998). A study of power and powerlessness. Issues in Mental Health Nursing, 19, 191-206. Lehane, M. & Rees, C. (1996). Alternatives to seclusion in psychiatric care. British Journal of Nursing, 5, 97-99. Meehan, F.X. (1982). A contemporary social spirituality. San Francisco, CA: Orbis. Page 1 of 2 Module 3 Creating Cultural Change 43 HANDOUT Blanch, A., & Parrish, J. (1990, September). Report on round table on alternatives to involuntary treatment. Bethesda, MD: National Institute of Mental Health. Roadmap to Seclusion and Restraint Free Mental Health Services Module 3 - References (continued) Mohr, W., Mahon, M., & Noone, M., (1998). A restraint on restraints: The need to reconsider the use of restrictive interventions. Archives of Psychiatric Nursing, 12, 95-106. Morrissey, J.P., & Monahan, J. (1999). Coercion mental health services: International perspectives. Research in Community Mental Health, 10, 25-27. National Association of Consumer/Survivor Mental Health Administrators. (2000). In Our Own Voices Survey. An unpublished survey. National Association of State Mental Health Program Directors (NASMHPD). (1999). Reducing the use of seclusion and restraint: Findings, strategies, and recommendations. Alexandria, VA: National Technical Assistance Center. National Association of State Mental Health Program Directors (NASMHPD). (2002). Managing conflict cooperatively: Making a commitment to nonviolence and recovery in mental health treatment settings. Alexandria, VA: National Technical Assistance Center. Pennsylvania Department of Public Welfare, Office of Mental Health and Substance Abuse Services. (2001). Leading the way toward a seclusion and restraint free environment: Pennsylvania’s success story. Harrisburg, PA: Author Ringwald, C. (1997, March 6). Patient-restraint issues prompt call for reform. Times Union. Scammel, A. (1997). Online at www.ukoln.ac.uk/services/elib/papers/tavistock/cultural-change/ intro.htm. Taxis, C.J. (2002). Ethics and praxis: Alternative strategies to physical restraint and seclusion in a psychiatric setting. Issues in Mental Health Nursing, 23, 157-170. Page 2 of 2 Module 3 Creating Cultural Change 44 HANDOUT Morales, E., & Duphorne, P. (1995). Least restrictive measures: Alternatives to four-point restraints and seclusion. Journal of Psychosocial Nursing and Mental Health Services, 33, 13-16; 42-43. Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 4 Understanding Resilience and Recovery From the Consumer Perspective 1 Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 4 Understanding Resilience and Recovery From the Consumer Perspective “…the initiative [Pennsylvania’s] to reduce the use of seclusion and restraint is part of a broader effort to reorient the State mental health system toward a consumer-focused philosophy that emphasizes recovery and independence.” —Charles G. Curie, Administrator, SAMHSA Learning Objectives Upon completion of this module the participant will be able to: • Define resilience. • List characteristics of resilient people. • Define recovery and list the eight assumptions of recovery. • Effectively implement recovery and resilience strategies that lead to the elimination of seclusion and restraint. Module 4 Understanding Resilience and Recovery from the Consumer Perspective 2 Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 4: UNDERSTANDING RESILIENCE AND RECOVERY FROM THE CONSUMER PERSPECTIVE Background for the Facilitators . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Presentation (2 hours, 45 minutes) . . . . . . . . . . . . . . . . . . . . . . . . 6 Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Resilience . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Exercise: Someone Who Believed in Them (20 minutes) . . . . . . . 9 Recovery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 Exercise: “Recovery as a Journey of the Heart” (35 minutes) . . . 13 Exercise: “What Are We Recovering From?” (15 minutes) . . . . . . 16 Journal/Take Action Challenge (20 minutes) . . . . . . . . . . . . . . . . . 18 Handouts for Participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 Journal and Take Action Challenges for Modules 3 & 4 . . . . . . . . . . 19 Someone Who Believed in Them Helped Them to Recover . . . . . . . 20 Recovery as a Journey of the Heart . . . . . . . . . . . . . . . . . . . . . . . 23 Recovery From Mental Illness—Guiding Vision . . . . . . . . . . . . . . . . 30 Resources: Self-Help Guides . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 3 Roadmap to Seclusion and Restraint Free Mental Health Services Overview This module will explain the concepts of resilience and recovery and how they relate to the elimination of seclusion and restraint. Resilience and recovery inspire hope. Both are empowering. Direct care staff and consumers working together can “beat the odds,” and develop healthy lifestyles that do not include the use of seclusion and restraint. A shift from deficit to strength-based assets of consumers can also lend itself to the reduction and elimination of seclusion and restraint. Perhaps Dr. Pat Deegan (2001) says it best: “Professionals who learn to collaborate with the active, resilient, adaptive self of the client will find themselves collaborating in new and rewarding ways with people who may have been viewed as hopeless by others.” Resilience In the 1980s, researchers examined risk factors underlying issues such as substance abuse, mental illness, teenage pregnancy, suicide, and problem behaviors. However, identifying risk factors does not provide enough information nor does it account for success stories. The term “resilience” was originally borrowed from the engineering field and adapted for use in social services. The engineering term refers to how much volume and weight (risk) a bridge can sustain before incurring damage. In the mental health field, no agreement on a single definition of resilience has been reached. However, it generally means the ability to bounce back after adversity (Resnick, 2000). The stories are countless of people who, in spite of all expectations and overwhelming odds against them, are healthy and are contributing positively to society. The common variable in increasing resilience is a positive connection with another human being. Oftentimes, people who have overcome enormous adversity in their lives can pinpoint a single person who made the difference for them. It is a person who took the time to listen, who believed in them and offered them hope. The person may not have even been trying to increase the other person’s resilience—it just happened. Other science-based factors which contribute to resilience include caring relationships, high expectations, adequate support, and opportunities to contribute. These factors might seem quite obvious and based on common sense. Indeed, they are. As humans, we all want opportunities to belong, to be supported, and to contribute. Module 4 Understanding Resilience and Recovery from the Consumer Perspective 4 BACKGROUND BACKGROUND FOR THE FACILITATORS: RESILIENCE AND RECOVERY FROM THE CONSUMER PERSPECTIVE Roadmap to Seclusion and Restraint Free Mental Health Services Recovery Since the 1980s much has been written about recovery from the consumer’s, family member’s, and mental health worker’s perspectives. Recovery is based on the assumption that people diagnosed with mental illnesses can and do become healthy and live meaningful lives. The emergence of recovery as a philosophy in mental health came from the writings and practices of the consumer movement. People diagnosed with mental illnesses challenged the myth that the most they could hope for was stability. Mental health workers initially dismissed the idea of recovery until Yale researchers did a study of “chronic schizophrenics” who were deinstitutionalized from Vermont State hospitals. The hospital staff had deemed these “patients” hopeless and helpless—they could not even dress themselves. The researchers asked the “patients” what they would need to get out of the hospital and they told them— jobs, friends, and a decent place to live. Almost 25 years later, one-half to two-thirds of the “patients” showed no signs of schizophrenia (DeSisto et al., 1995). Many have adopted recovery as a viable model. Empirical evidence has supported the positive outcomes of an individualized recovery process that includes hope, personal responsibility, education, advocacy, empowerment, and respect (Anthony, 1993; Deegan, 1988; Leete, 1989; Unzicker, 1989). “All services for those with a mental disorder should be consumer oriented and focused on promoting recovery” (Mental Health: A Report of the Surgeon General, 1999, p. 455). It is important for mental health workers to communicate that recovery is possible and to verbalize hope. “Hearing from a mental health professional that recovery is an achievable goal can make a tremendous difference in a person’s approach to treatment and success” (Courtenay Harding, Ph.D., Director of the Institute for the Study of Human Resilience, Boston University, 2001). We all have our own processes of recovery, whether we are people diagnosed with a mental illness, a family member, or a mental health worker. Recovery may include the use of the following tools: building and sustaining a strong support system; developing an individualized plan to monitor and respond to symptoms; accessing good medical care and treatment which may or may not include medication; and developing and maintaining positive coping mechanisms to support everyday life that enhance wellness. Recovery is a self-empowering concept and critical to the successful collaboration between people diagnosed with mental illnesses and mental health workers. This section includes a personal story of recovery, definitions of recovery, assumptions of recovery, identification of what people are recovering from, and principles on which psychosocial rehabilitation is based. We encourage you to add your own stories of recovery when applicable. Module 4 Understanding Resilience and Recovery from the Consumer Perspective 5 BACKGROUND We all have the capacity to increase resilience for people diagnosed with mental illnesses, their families, and caregivers. This section on resilience is meant to inspire and encourage all of us to internalize hope and pass it on to others. Included in this section are definitions of resilience, a personal story of resilience, and characteristics of resilient people. Roadmap to Seclusion and Restraint Free Mental Health Services Welcome participants, review names, and make sure everyone has a nametag or name tent. It may be helpful to provide a quick review of Module 3: Creating Cultural Change. Allot time to complete Journal/Take Action Challenges covering Modules 3 and 4. Learning Objectives Upon completion of this module the participant will be able to: • Define resilience • List characteristics of resilient people • Define recovery and list the eight assumptions of recovery • Effectively implement recovery and resilience strategies that lead to the elimination of seclusion and restraint. Overview • This module will explain the concepts of resilience and recovery and how they are related to the elimination of seclusion and restraint. • Words are so powerful. They can hurt or they can help. Choosing words that help— like recovery, resilience, and hope—are useful. • Recovery and resilience inspire hope. • Resilience and recovery empower people diagnosed with a mental illness. Module 4 Understanding Resilience and Recovery from the Consumer Perspective 6 PRESENTATION PRESENTATION Roadmap to Seclusion and Restraint Free Mental Health Services Resilience • There is no one definition of resilience in the literature. • It is a difficult concept to describe. • Following are some examples of resilience definitions. Resilient People Beat the Odds ”Resilient people are those who ‘beat the odds.’ They have good healthy outcomes, even in the presence of enormous adversities in their lives.” Michael Resnick, Ph.D., 2000 • Dr. Resnick is a well-known researcher in the area of adolescent health. His work has been influential in looking at what individuals, schools, and communities can do to promote resilience. • Researchers used to study what risk factors made it more likely for someone to have health-related problems. Now our focus has changed to what keeps people, particularly young people, from ever developing health-related problems, including mental illness. These characteristics have also been called assets. • One of the key outcomes of resiliency research has been shifting from a deficit frame of mind to a resilient frame of mind. Module 4 Understanding Resilience and Recovery from the Consumer Perspective 7 PRESENTATION • Using resilience and recovery means a paradigm shift from deficit to strength-based approaches. • Assets of consumers assist in reducing and eliminating seclusion and restraint. • There is no agreement on the definition of resilience in the mental health field. Generally, it means the ability to bounce back after adversity. • There are countless stories of people diagnosed with mental illnesses who, in spite of all expectations and overwhelming odds, are healthy and contributing positively to society. • One common variable in increasing resilience is a positive connection with another human being. Very often a person who has overcome adversity can pinpoint a single person who made a difference for them. Roadmap to Seclusion and Restraint Free Mental Health Services Resilience is….. • “… the power of the human spirit to sustain grief and loss and to renew itself with hope and courage defies all description.” Dr. Daniel Gottlieb, 1991 • “…when success occurs despite major challenge” Ann Masten, Ph.D. • “…self-righting capacities – the strengths people, families, schools, and communities call upon to promote health and healing.” SAMHSA • As you can see, there are many definitions of resilience. What is important to know is that you, as direct care staff, can foster resiliency in consumers diagnosed with mental illnesses. Module 4 Understanding Resilience and Recovery from the Consumer Perspective 8 PRESENTATION • Here are a few definitions of resilience. Roadmap to Seclusion and Restraint Free Mental Health Services Someone Who Believed in Them OBJECTIVE: Participants will identify key concepts of human connection and its role in fostering resilience. PROCESS: Distribute the handout Someone Who Believed in Them Helped Them to Recover and give the participants time to read the article in class. Ask each participant to think of someone who believed in him or her and inspired him or her with hope during a difficult time. Have them write down three things that the person said or did that were helpful. Ask for volunteers to share their experiences. Facilitate a discussion. DISCUSSION QUESTIONS: What kinds of relationships help foster resilience? What characteristics of direct care staff could help consumers to be more resilient? MATERIALS REQUIRED: Someone Who Believed in Them Helped Them to Recover handout APPROXIMATE TIME REQUIRED: 20 minutes Module 4 Understanding Resilience and Recovery from the Consumer Perspective 9 PRESENTATION Exercise/Discussion—Module 4 Roadmap to Seclusion and Restraint Free Mental Health Services End this section on some kind of positive, inspirational note. You may use the Starfish poem or some of your own materials. • The following poem is an example of resiliency and how one person can make a difference. As the old man walked along the beach at dawn, he noticed a young woman ahead of him picking up starfish and flinging them back into the sea. Finally, catching up with her, he asked why she was doing this. The answer was that the starfish would die if left until the morning sun. “But the beach goes on for miles and there must be millions of starfish,” said the old man. “How can your effort possibly make a difference?” The young woman looked at the starfish in her hand, Threw it to safety in the waves and said, “It makes a difference to this one!” Module 4 Understanding Resilience and Recovery from the Consumer Perspective 10 PRESENTATION • Resilience is an interaction of changing the external environment as well as inspiring hope in individuals. • Research shows the following foster resilience: o Caring relationships o High expectations o Adequate support o Opportunities to contribute • People who are resilient have some common characteristics. Roadmap to Seclusion and Restraint Free Mental Health Services Recovery is… …a common human experience and a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills or roles toward our understanding of mental illness (Anthony, 1993). Module 4 Understanding Resilience and Recovery from the Consumer Perspective 11 PRESENTATION Recovery • Recovery is based on the assumption that people diagnosed with mental illnesses can and do improve, become healthy, and live meaningful lives. • Recovery initially emerged from the consumer movement in the 1980s. • Science-based evidence supports a philosophy of recovery. • The Surgeon General said in 1999, “All services for those with a mental disorder should be consumer oriented and focused on promoting recovery” (US DHHS, 1999). • The Resources handout has information on how to access Self-Help Guides for Recovering Your Mental Health. • Just as there are many definitions of resilience, there are many definitions of recovery. Here are a few examples: Roadmap to Seclusion and Restraint Free Mental Health Services …“a process, an outcome, and a vision. We all experience recovery at some point in our lives from injury, from illness, from loss, or from trauma. Recovery involves creating a new personal vision for one’s self. (Spaniol, Gagne, & Koehler, 1997). • Pat Deegan, Ph.D., has written and spoken extensively about recovery. • Dr. Deegan is associated with Boston University’s Institute for the Study of Resilience. • For those of you who are interested, you may want to visit her Web site at www.patdeegan.com. Many of her articles and speeches are available online and serve as an excellent resource for consumers as well as staff. • We recommend using the video Recovery as a Journey of the Heart by Pat Deegan. To obtain a copy of the video, contact Dr. Deegan at pat@patdeegan.com or at Pat Deegan, Ph.D., & Associates, LLC, P.O. Box 208, Bayfield, MA, 01922. Module 4 Understanding Resilience and Recovery from the Consumer Perspective 12 PRESENTATION Recovery is… Roadmap to Seclusion and Restraint Free Mental Health Services “Recovery as a Journey of the Heart” OBJECTIVE: Participants will identify key concepts of recovery from a personal recovery story. Participants will uncover their own biases about the recovery process for people diagnosed with mental illnesses. PROCESS: Distribute the handout Recovery as a Journey of the Heart. Play the 13-minute excerpt from Recovery as a Journey of the Heart video. Ask each participant to write down three things that promote and three things that hinder recovery. Divide the group into four or five smaller groups and have each person share their findings. Tell each group to pick a recorder to keep track of the responses and a reporter who will report the major themes back to the larger group. Have each group report to the larger group. If time allows, facilitate a large group discussion. DISCUSSION QUESTIONS: • What were the similarities among all the groups? • We are all recovering from something. What have your own experiences of recovery been like? MATERIALS REQUIRED: • Video—Recovery as a Journey of the Heart • A copy of the Recovery as a Journey of the Heart article for each participant. APPROXIMATE TIME REQUIRED: Module 4 35 minutes Understanding Resilience and Recovery from the Consumer Perspective 13 PRESENTATION Exercise/Discussion—Module 4 Roadmap to Seclusion and Restraint Free Mental Health Services Distribute the article by Bill Anthony, Recovery from Mental Illness: The Guiding Vision of the Mental Health Service System in the 1990s. (Please read the article so you as the facilitator can discuss each of these assumptions. Instruct participants to read it on their own time. ) Recovery Assumptions Recovery can occur without professional intervention. 2. A common denominator of recovery is the presence of people who believe in and stand by the person in need of recovery. 3. A recovery vision is not a function of one’s theory about the causes of mental illness. 4. Recovery can occur even though symptoms reoccur. 1. • #1 – Professionals do not hold the key to recovery; consumers do. The task of professionals is to facility recovery. The task of consumers is to recover. What prompts recovery is not just an array of mental health services. It is essential to have adult education, sports, clubs, churches, self-help groups, families, and friends. • #2 – Individuals need people who believe in them and can be there in time of need. • #3 – The cause of the mental illness does not matter. • #4 – Mental illness is episodic in nature. Just because an individual has an episode does not mean he or she is not in recovery. Module 4 Understanding Resilience and Recovery from the Consumer Perspective 14 PRESENTATION • We are all recovering from something. • Bill Anthony, Ph.D., has also written extensively about recovery. Dr. Anthony is associated with Boston University’s Center for Psychiatric Rehabilitation. • For those of you who may be unfamiliar with his work, you may want to visit his Web site at www.bu.edu/cpr. Several of his articles and speeches are available online and are great resources for both consumers and staff. • In 1993, he wrote a seminal article outlining the assumptions of recovery. Roadmap to Seclusion and Restraint Free Mental Health Services Recovery changes the frequency and direction of symptoms. 6. Recovery does not feel like a linear process. 7. Recovery from the consequences of the illness is sometimes more difficult than recovering from the illness itself. 8. Recovery from a mental illness does not mean that one was not “really mentally ill”. 5. • #5 – Even though symptoms may reoccur, they are most often less severe and last for a shorter amount of time. • #6 – Recovery does not feel systematic and planned. Often there are steps forward, then back, and then forward again. • #7 – The barriers faced when one is categorized as “mentally Ill” can be overwhelming. The discrimination in employment and housing and lack of opportunities is disempowering. • #8 – At times, people who have successfully recovered have been discounted as not having “really” been mentally ill. Individuals in recovery are often not seen as a model, but rather as an aberration or even a fraud. • All have their own recovery process, whether they are consumers, direct care staff, or family members. • Even if you have never personally experienced mental illness, you still have a recovery process. • Because we all have a recovery process, it is important to look at what exactly we are recovering from. Module 4 Understanding Resilience and Recovery from the Consumer Perspective 15 PRESENTATION Recovery Assumptions Roadmap to Seclusion and Restraint Free Mental Health Services “What Are We Recovering From?” OBJECTIVE: To increase participants’ awareness that consumers, caregivers, and families each have a recovery process. PROCESS: On either a chalk board or flip chart, write the question, “What are people diagnosed with a mental illness recovering from?” Have the group brainstorm as many responses as possible. What Are Consumers Recovering From? • • • • • • • • • • • Major losses of people and opportunities The catastrophe of mental illness Trauma from mistreatment Negative professional attitudes Lack of recovery skills of professionals Devaluing and disempowering programs, practices, and environments Lack of enriching opportunities Stigma and discrimination from society Lack of opportunities for self-determination Crushed dreams Lack of a sense of self, valued roles, and hope On either a chalk board or flip chart, write the question, “What are direct care staff and/or families recovering from?” Have the group brainstorm as many responses as possible. Page 1 of 2 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 16 PRESENTATION Exercise/Discussion—Module 4 Roadmap to Seclusion and Restraint Free Mental Health Services “What Are We Recovering From?” (continued) What Do Direct Care Staff and/or Families Recover From? • • • • • • • • Worn out beliefs Hopelessness and helplessness Need to be in control An unbalanced relationship Disbelief in consumer’s ability Fear of mental illness Discrimination Hopes and expectations DISCUSSION QUESTIONS: • • • • What are the similarities between the two lists? What helps/hinders people in recovery? How can you as a professional best assist recovery? What advice would you give to a person in the first stages of recovery? • How do you think professionals view the process of recovery? • What do you think about individuals speaking out about their mental illness? • Have you had personal experience(s) with stigma concerning mental illness? How does stigma affect recovery? APPROXIMATE TIME REQUIRED: 15 minutes SOURCE: Recovery material from Spaniol, Gagne, & Koehler (1997) Page 2 of 2 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 17 PRESENTATION Exercise/Discussion—Module 4 Roadmap to Seclusion and Restraint Free Mental Health Services Give participants time to respond to one to two questions from the Journal section and at least one question from each of the Personal Take Action Challenges and the Workplace Take Action Challenges. They will use these Take Action Challenges extensively on the last day of the training. Module 4 Understanding Resilience and Recovery from the Consumer Perspective 18 PRESENTATION JOURNAL/TAKE ACTION CHALLENGE Roadmap to Seclusion and Restraint Free Mental Health Services Journal Topics Pick one or two questions and write your responses. Your responses are confidential. • What do you like/dislike about cultural change theory? • When you have been in a stressful situation in the past, what has been helpful for you to hear? What has not been helpful? • What are words or phrases that you use that might be helpful/hurtful to consumers? • How do the concepts of recovery relate to you personally? • What scares and inspires you most about people diagnosed with a mental illness working in the mental health field? • How could you implement programs based on models of resiliency and recovery? • How would your daily work change if the mental health system wholeheartedly adopted the underpinnings of resilience and recovery? • Where do you feel empowered to make changes? Where do you feel disempowered to make changes? What can you do about it? • What are the unwritten and/or unspoken rules or beliefs about seclusion or restraint in your work environment? Do you agree or disagree with these rules/beliefs? How do these rules/beliefs get perpetuated and what would it take to change them? Personal Take Action Challenges Pick one topic and develop a plan. You will use this plan on the last day of training. • Find one area in your life where you could work on fostering your own resilience or recovery. How would your life look different if you adopted these philosophies? • Make a list of two things you can personally commit to in your daily life to move you forward in your own resilience and recovery. Workplace Take Action Challenges Pick one topic and develop a plan. You will use this plan on the last day of training. • What do you see as your professional responsibility in changing the culture at work as it pertains to eliminating seclusions and restraint? • Find one area where you could expand on the philosophy of resilience and recovery philosophy in your daily work. How would it change how you currently interact with consumers? How would things stay the same? • Make a list of two things that you personally can commit to every day to incorporate resilience and recovery into your work. Make a detailed plan of how you will implement these changes. Module 4 Understanding Resilience and Recovery from the Consumer Perspective 19 HANDOUT JOURNAL TOPICS AND TAKE ACTION CHALLENGES FOR MODULES 3 & 4 Roadmap to Seclusion and Restraint Free Mental Health Services Someone Who Believed in Them Helped Them to Recover People who have significantly recovered from mental illness frequently say they were greatly helped by someone who believed in them. One woman stated that there was a doctor who “Believed in me. She never gave up. She was the only one who didn’t give up as far as [my] being in the hospital.” Another woman stated that for her it was a caring therapist. She said, “He was the first person I encountered out of the ordeal that actually had some sort of feeling. He was sympathetic at least and was understanding. He was really helping me out and motivating. Motivating me to keep on fighting, don’t give up...Don’t let them get their way, just keep on fighting.” A nurse working with me reflected that the most important elements to her recovery were “Having a mentor, a connection and a relationship...someone I made a strong connection to and they made one to me and they believed in me and I knew it...There was a knowing in their eyes that I saw that said I see you and I really believe in you. Someone that carried me. Somehow that encouraged me to not fall backwards.” Another woman in describing the residential counselor as the most important person in her recovery stated, “She believed in me...She sent me a card that said, ‘keep up the good work.’ She saw a spark in me. She told me from the start I had a good deal going for me. She helped encourage me and put courage in me. She gave me incentive.” The people who work in residential services are often the ones whose belief made a difference in someone’s recovery. Jim is an example of such a worker. For 8 years he has patiently and respectably offered his heart and hand to consumer/survivors. Recently he described a priceless moment with a consumer/survivor, Eric, whom everyone else had written off. During a walk with Eric, Jim commented on the beauty of the sky. Eric replied, “It is of no importance to me now; why are you telling me about it.” Jim was delighted. It was one of the first times that Eric had expressed a strong emotion directly to another person. It was also one of the first times that he stated that his needs were different from those of others. Jim thinks that Eric now feels safe enough to express strong feeling within their relationship. Over several years, Jim has carefully won Eric’s trust through listening to his deepest requests. For instance, Eric has bitterly complained that he has not felt alive on his major tranquilizer. Jim has been able to help Eric to negotiate a much lower dose. Though in the past Eric suffered increased paranoia when his medication was lowered, he has not done so this time. I am sure this is because of his close relationship with Jim which has allowed him to feel safe with greater feelings. Eric has also started to listen to different music. For many years he Page 1 of 3 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 20 HANDOUT by Dan B. Fisher, M.D., Ph.D., National Empowerment Center Roadmap to Seclusion and Restraint Free Mental Health Services Someone Who Believed in Them (continued) When I asked other staff about Jim they said he reminds them of Yoda, the wise being from Star Wars. When he walks into a room everyone feels a sense of calm and peace, yet he can be firm. A consumer called and was abusive to him on the phone. He calmly said, “I won’t talk with you when you treat me that way. When you can have a civil conversation call me back.” In a few minutes she did and they had a productive conversation. He has a sense of humor. One day a consumer was getting very angry on the bus. Others felt threatened, but Jim suddenly burst out laughing and so did the consumer. When I asked Jim what he felt was most important in his relating with consumer-survivors, he said, “I just accept them, the real person. Then they will present more and more of themselves to you.” Such an elusively simple description of the beauty he weaves. Jim’s manner reminds me deeply of the contact I yearned for and occasionally found in my own journey to recover my own lost self. After a year with an emotionally remote analyst, I sought a different kind of therapist, one that was more human and showed more of himself to me. I made one request at the start of our therapy. “Could you please be a real person with me?” He said he would try to and the combination of his acceptance of my request and his humility planted the roots of trust. There were many tests of our relationship, but he was consistent in his support of me at a deep level. When I told him I wanted to become a psychiatrist he said he would be there for my graduation and he was, even though I was no longer in therapy with him. When I would thank him for an insight he would insist that I had done the work and the healing. He said he had merely provided the setting. When I asked how he felt about my attending a group with another therapist. He said he trusted that I knew what I needed to heal. Equally compelling is the centering and spiritual renewal coming for the person who does the believing in another. Whether it is for our children, lover, pet, or person in need of help, there is deep meaning for the person who can step outside their world to support another’s. A client I had seen through many hospitalizations recently had a long period free of such episodes. She clearly had a new light in her eye. When I asked what had changed she said now that she was working as a provider she had a sense of meaning and purpose in her life. Helping others gave her sufficient meaning that she felt her life was worth living. These observations recall the research of Carl Rogers into the nature of the helping relationships. He stated that “the safety of being liked and prized as a person seems a highly important element in a helping relationship” (On Becoming a Person, 1961). Martin Buber Page 2 of 3 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 21 HANDOUT would only listen to heavy metal which Jim felt he needed to listen to because it was needed to drown out his painful thoughts. Now Eric is able to listen to soft rock and folk. Roadmap to Seclusion and Restraint Free Mental Health Services Someone Who Believed in Them (continued) These descriptions, however, were mostly for people with moderate emotional problems. When someone is labeled with mental illness, it is as if all that has been learned to be helpful in therapy is thrown out. Medical students are taught to medicate, not to converse with mental patients. They are told that people labeled with mental illness have a brain disease and you cannot talk to a disease. Our lived experiences speak otherwise. Our lives show that people labeled with mental illness need a therapist and other people who believe in them. We, who have been labeled with mental illness, remain just as human if not more so than others who are temporarily not labeled. Our needs are human needs of which the most basic is to enter into trusting, loving, and caring relationships. These relationships need to be nurtured and cultivated for us to find the compass of our true self to guide our recovery. Any system of care which disturbs or interferes with these relationships is preventing, not promoting, recovery. Reprinted by permission of NEC. Copyright ©1999, National Empowerment Center, Inc. All rights reserved. www.namiscc.org Page 3 of 3 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 22 HANDOUT also describes the importance of having someone believe in you. He calls this characteristic “confirming the other...Confirming means accepting the whole potentiality of the other. I can recognize in him the person he has been created to become.” Rogers goes on to State that “if I accept the other person as something fixed, already diagnosed and classified...then I am doing my part to confirm this limited hypothesis. If I accept him as a process of becoming, then I am doing what I can to confirm or make real his potential. Roadmap to Seclusion and Restraint Free Mental Health Services Recovery as a Journey of the Heart …We pass on knowledge about mental illness. Students emerge from school with knowledge about neurotransmitters and schizophrenics and bipolars and borderlines and multiples and OCDs. They become experts in recognizing illness and disease. But this is where we so often fail them. We fail them because we have not taught them to seek wisdom—to move beyond mere recognition in order to seek the essence of what is. We have failed to teach them to reverence the human being who exists prior to and in spite of the diagnosis we have placed upon them. Just as the generic, anatomical heart does not exist, neither does “the schizophrenic” or “the multiple” or the “bipolar” exist outside of a generic textbook. What exists, in the truly existential sense, is not an illness or disease. What exists is a human being, and wisdom demands that we see and reverence this human being before all else. Wisdom demands that we wholeheartedly enter into a relationship with human beings in order to understand them and their experience. Only then are we able to help in a way that is experienced as helpful. Those of us who have been labeled with mental illness are first and foremost human beings. We are more than the sum of the electrochemical activity of our brains. Our hearts are not merely pumps. Our hearts are as real and as vulnerable and valuable as yours are. We are people. We are people who have experienced great distress and who face the challenge of recovery. The concept of recovery is rooted in the simple yet profound realization that people who have been diagnosed with mental illness are human beings. Like a pebble tossed into the center of a still pool, this simple fact radiates in ever larger ripples until every corner of the academic and applied mental health science and clinical practice are affected. Those of us who have been diagnosed are not objects to be acted upon. We are fully human subjects who can act and in acting, change our situation. We are human beings and we can speak for ourselves. We have become self-determining. We can take a stand toward what is distressing to us and need not be passive victims of an illness. We can become experts in our own journey of recovery. The goal of recovery is not to get mainstreamed. We don’t want to be mainstreamed. We say let the mainstream become a wide stream that has room for all of us and leaves no one stranded on the fringes. The goal of the recovery process is not to become normal. The goal is to embrace our human vocation of becoming more deeply, more fully human. The goal is not normalization. The goal is to become the unique, awesome, never to be repeated human being that we are called to be. The philosopher Martin Heidegger said that to be human means to be a question in search of an answer. Those of us who have been labeled with mental illness are not de facto Page 1 of 7 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 23 HANDOUT by Patricia E. Deegan Ph.D. Roadmap to Seclusion and Restraint Free Mental Health Services Recovery as a Journey of the Heart (continued) To be human means to be a question in search of an answer. However, many of us who have been psychiatrically labeled have received powerful messages from professionals who in effect tell us that by virtue of our diagnosis the question of our being has already been answered and our futures are already sealed. For instance, I can remember such a time during my third hospitalization. I was 18 years old. I asked the psychiatrist I was working with, “What’s wrong with me?” He said, “You have a disease called chronic schizophrenia. It is a disease that is like diabetes. If you take medications for the rest of your life and avoid stress, then maybe you can cope.” And as he spoke these words I could feel the weight of them crushing my already fragile hopes and dreams and aspirations for my life. Even some 22 years later those words still echo like a haunting memory that does not fade. Today I understand why this experience was so damaging to me. In essence the psychiatrist was telling me that my life, by virtue of being labeled with schizophrenia, was already a closed book. He was saying that my future had already been written. The goals and dreams that I aspired to were mere fantasies according to his prognosis of doom. When the future has been closed off in this way, then the present loses its orientation and becomes nothing but a succession of unrelated moments. Today I know that this psychiatrist had little wisdom at that time. He merely had some knowledge and recognized me as “the schizophrenic” who had been handed down through the generations by Kraeplin and Bleuler. He did not see me. He saw an illness. We must urge our students to seek wisdom, to move beyond mere recognition of illness and to wholeheartedly encounter the human being who comes for help. It is imperative that we teach students that relationship is the most powerful tool they have in working with people. Beyond the goals of recovery, there is the question of the process of recovery. How does one enter into the journey of recovery? Today I would like to begin a conceptualization of recovery as a journey of the heart. We will begin in that place where many people find themselves—in that place of being hard of heart and not caring anymore. Prior to becoming active participants in our own recovery process, many of us find ourselves in a time of great apathy and indifference. It is a time of having a hardened heart. Of not caring anymore. It is a time when we feel ourselves to be among the living dead: alone, abandoned, and adrift on a dead and silent sea without course or bearing. If I turn my gaze back Page 2 of 7 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 24 HANDOUT excused from this most fundamental task of becoming human. In fact, because many of us have experienced our lives and dreams shattering in the wake of mental illness, one of the most essential challenges that faces us is to ask, “Who can I become and why should I say ‘yes’ to life?” Roadmap to Seclusion and Restraint Free Mental Health Services Recovery as a Journey of the Heart (continued) …During this time people would try to motivate me. I remember people trying to make me participate in food shopping on Wednesday or to help bake bread or to go on a boat ride. But nothing anyone did touched me or moved me or mattered to me. I had given up. Giving up was a solution for me. The fact that I was “unmotivated” was seen as a problem by the people who worked with me. But for me, giving up was not a problem, it was a solution. It was a solution because it protected me from wanting anything. If I didn’t want anything, then it couldn’t be taken away. If I didn’t try, then I wouldn’t have to undergo another failure. If I didn’t care, then nothing could hurt me again. My heart became hardened. The springs came and went and I didn’t care. Holidays came and went and I didn’t care. My friends went off to college and started new lives and I didn’t care. I remember sitting and smoking and saying almost nothing. And as soon as the clock struck 8, I remember interrupting my friend in midsentence and telling her to go home because I was going to bed. Without even saying goodbye, I headed for my bed. My heart was hard. I didn’t care about anything. I trust that the picture I am painting here is familiar to many of us. We recognize this picture of apathy, withdrawal, isolation, and lack of motivation. But if we go beyond mere recognition in search of wisdom we must dig deeper. What is this apathy, indifference, hardness of heart which keeps so many people in a mode of survival and prevents them from actively entering into their own journey of recovery? Is it merely the negative symptoms of schizophrenia? I think not. I believe that becoming hard of heart and not caring anymore is a strategy that desperate people, who are at the brink of losing hope, adopt in order to remain alive. Hope is not just a nice sounding euphemism. Hope and biological life are inextricably intertwined. Martin Seligman’s (1975) work in the field of learned helpless offers us great insight into the chiasmic intertwining of hope and biological life. …I would say that when those of us with psychiatric disabilities come to believe that all of our efforts are futile. When we experience that we have no control over our environment; when nothing we do seems to matter or to make the situation better; when we follow the treatment team’s instructions and achieve their treatment goals for us and still no placement opens up in the community for us; when staff decide where we will live, with whom we will live, under what rules we will live, how we will spend our money, if we will be allowed to spend our money, when we will have to leave the group home, and at what time we will be Page 3 of 7 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 25 HANDOUT I can see myself at 17 years old, diagnosed with chronic schizophrenia, drugged on Haldol and sitting in a chair. As I conjure the image, the first thing I can see are the girl’s yellow, nicotine-stained fingers. I can see her shuffled, stiff, drugged walk. Her eyes do not dance. The dancer has collapsed and her eyes are dark and they stare endlessly into nowhere. Roadmap to Seclusion and Restraint Free Mental Health Services Recovery as a Journey of the Heart (continued) Of course, the great danger is that staff will fail to recognize the intensity of the existential struggle that the person who is hard of heart is struggling with. The danger is that the staff will simply say, “Oh, this person just has a lot of negative signs and symptoms and that’s a poor prognosis and we mustn’t expect much from this person.” Or staff may become judgmental and dismiss us as simply being lazy and unmotivated. Or the staff may succumb to their own despair and simply write us off as being “low functioning.” …However the staff must not fall into despair, feel like their efforts are futile, grow hard of heart, and stop caring themselves. If they do this, then they are doing exactly what the person with a psychiatric disability is doing. Staff must avoid this trap. They must do what the person cannot yet do. Staff must role model hope and continue to offer options and choices even if they are rejected over and over again. Additionally, environments must include opportunities for people to have accurate information. Information is power and information sharing is power sharing. People who feel powerless can increase their sense of self-efficacy by having access to information. People who feel powerless also feel that what they say does not matter. Taking the time to listen to people and to help them find their own unique voice is important. Having a voice in developing rules as well as having a say in the hiring and evaluation of staff are important ways of exercising a voice that for too long has been silenced. Finally, it is important to have other people with psychiatric disabilities working as paid staff. Role models provide hope that maybe I, too, can break out of this hardened heart and begin to care again. People who are defending themselves against the possibly lethal effects of profound hopelessness must see that there is a way out and that actions they take can inch them ever closer to their desired goal. They need to see that the quality of life can get better for people who have been similarly diagnosed. They need to see that there are opportunities for improving their situation. That is why hiring people with psychiatric disabilities as mental health professionals and staff is so important. It is also why exposure to peer support, self help, and mutual support are so important. Choice, options, information, role models, being heard, developing and exercising a voice, opportunities for bettering one’s life: these are the features of a human interactive environment which support the transition from not caring to caring, from surviving to becoming an Page 4 of 7 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 26 HANDOUT allowed back into it, then a deep sense of hopelessness, of despair, begins to settle over the human heart. And in an effort to avoid the biologically disastrous effects of profound hopelessness, people with psychiatric disabilities do what other people do. We grow hard of heart and attempt to stop caring. It is safer to become helpless then to become hopeless. Roadmap to Seclusion and Restraint Free Mental Health Services Recovery as a Journey of the Heart (continued) As for myself, I cannot remember a specific moment when I turned that corner from surviving to becoming an active participant in my own recovery process. My efforts to protect my breaking heart by becoming hard of heart and not caring about anything lasted for a long time. One thing I can recall is that the people around me did not give up on me. They kept inviting me to do things. I remember one day, for no particular reason, saying “yes” to helping with food shopping. All I would do was push the cart. But it was a beginning. And truly, it was through small steps like these that I slowly began to discover that I could take a stand toward what was distressing to me. I know that anger, especially angry indignation, played a big role in that transition. When that psychiatrist told me the best I could hope for was to take my medications, avoid stress, and cope, I became enraged. (However, I was not smart enough to keep my angry indignation to myself because the #1 rule is never get enraged in a psychiatrist’s office if you’re being labeled with chronic schizophrenia!) I also remember that just after that visit I made up my mind to become “a doctor.” I was so outraged at the things that had been done to me against my will in the hospital as well as the things I saw happen to other people, that I decided that I wanted to get a powerful degree and have enough credentials to run a healing place myself. In effect I had a survivor mission that I felt passionately about. I was also careful not to share my newfound aspiration with anyone. Imagine what my psychiatrist would have said to me if I had announced at age 18, having virtually flunked out of high school, with a combined GRE score of under 800, with a diagnosis of chronic schizophrenia, that I was planning on getting my Ph.D. in clinical psychology. “Delusions of grandeur!” But in essence that is precisely what I did. Starting with one course in English Composition at the local community college, I slowly made my way. Dragging my textbooks into the mental hospital with me or trying to read with double vision due to Prolixin, I inched my way forward. I had a strong spirituality that really helped. I had a strong therapeutic alliance with a psychotherapist. I lived with latter-day hippies who had tolerance for lots of weird behavior, including my psychotic episodes. After some experimenting in my early teens, I somehow intuited that drugs and alcohol were bad news for me and I did not use them even though the people around me did. In retrospect, I know this was a wise decision. I read books about healing and psychopathology and personality theory in an effort to understand myself and my situation. I was always trying new ways of coping with symptoms, including my relentless auditory hallucinations. And perhaps most importantly of all, when I got out of bed in the morning, I always knew the reason why—I had a purpose in life, I had been called, I had Page 5 of 7 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 27 HANDOUT active participant in one’s own recovery process. Creating such environments are the skills which tomorrow’s mental health professionals must master. Roadmap to Seclusion and Restraint Free Mental Health Services Recovery as a Journey of the Heart (continued) My journey of recovery is still ongoing. I still struggle with symptoms, grieve the losses that I have sustained, and have had to get involved in treatment for the sequel child abuse. I am also involved in self help and mutual support and I still use professional services including medications, psychotherapy, and hospitals. However, now I do not just take medication or go to the hospital. I have learned to use medications and to use the hospital. This is the active stance that is the hallmark of the recovery process. There is more to the recovery process than simply recovering from mental illness. We must also recover from the effects of poverty and second class citizenship. We must learn to raise our consciousness and find our collective pride in order to overcome internalized stigma. Finally, many of us emerge from mental health treatment settings with traumatic stress disorders related to having sustained or witnessed physical, sexual, and/or emotional abuse at the hands of staff. “Sometimes I scream at night because I dream about the hospital I was raped in or some other hospital I’ve been in” (LaLime, 1990). Sometimes recovering from mental illness is the easy part. Recovering from these deep wounds to the human heart takes longer. Recovery does not mean “cure.” It does not mean stabilization or maintenance. Rather recovery is an attitude, a stance, and a way of approaching the day’s challenges. It is not a perfectly linear journey. There are times of rapid gains and disappointing relapses. There are times of just living, just staying quiet, resting, and regrouping. Each person’s journey of recovery is unique. Each person must find what works for them. This means that we must have the opportunity to try and to fail and to try again. In order to support the recovery process, mental health professionals must not rob us of the opportunity to fail. Professionals must embrace the concept of the dignity of risk and the right to failure if they are to be supportive of us. A new age is upon us. …Understanding that people with psychiatric disabilities are first and foremost people who are in process, growing, and changing is the cornerstone of understanding the concept of recovery. We must not let our hearts grow hard and callused toward people with psychiatric disabilities. Our role is not to judge who will and will not recover. Our job is to create environments in which opportunities for recovery and empowerment exist. Our job is to establish strong, supportive relationships with those we work with. And perhaps most of all, our greatest challenge is to find a way to refuse to be dehumanized in the age of managed profit and to be bold and brave and daring enough to remain human hearted while working in the human services. Page 6 of 7 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 28 HANDOUT a vocation, and I kept saying yes to it. Even in the present I must make a daily affirmation of my vocation in order to keep going. The temptation to give up is still strong sometimes. Roadmap to Seclusion and Restraint Free Mental Health Services Recovery as a Journey of the Heart (continued) LaLime, W. (1990). Untitled speech used as part of Lowell M-POWER’s anti-stigma workshop, Lowell. MA. Cited in Deegan, P. (1990). Spirit breaking: When the helping professions hurt. The Humanistic Psychologist, 18(3), 301-313. Lefcourt, H.M. (1973). The function of the illusions of control and freedom. American Psychologist, 28, 417-425. Seligman, M.E.P. (1975). Helplessness: On depression, development, and death. San Francisco: Freeman. Page 7 of 7 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 29 HANDOUT References Roadmap to Seclusion and Restraint Free Mental Health Services by William A. Anthony William A. Anthony, Ph.D., is Executive Director of the Center for Psychiatric Rehabilitation at Boston University, Boston, Massachusetts Abstract: The implementation of deinstitutionalization in the 1960s and I970s, and the increasing ascendance of the community support system concept and the practice of psychiatric rehabilitation in the 1980s, have laid the foundation for a new 1990s vision of service delivery for people who have mental illness. Recovery from mental illness is the vision that will guide the mental health system in this decade. This article outlines the fundamental services and assumptions of a recovery-oriented mental health system. As the recovery concept becomes better understood, it could have major implications for how future mental health systems are designed. The seeds of the recovery vision were sown in the aftermath of the era of deinstitutionalization. The failures in the implementation of the policy of deinstitutionalization confronted us with the fact that a person with severe mental illness wants and needs more than just symptom relief. People with severe mental illnesses may have multiple residential, vocational, educational, and social needs and wants. Deinstitutionalization radically changed how the service system attempts to meet these wants and needs. No longer does the State hospital attempt to meet these multiple wants and needs; a great number of alternative community-based settings and alternative inpatient settings have sprung up since deinstitutionalization. This diversity has required new conceptualizations both of how services for people with severe mental illnesses should be organized and delivered, and of the wants and needs of people with severe mental illness. This new way of thinking about services and about the people served has laid the foundation for the gradual emergence of the recovery vision in the 1990s. As a prelude to a discussion of the recovery vision, the present paper briefly describes the community support system (CSS) concept and the basic services integral to a comprehensive community support system. Next, the more thorough understanding of the total impact of severe mental illness, as conceptualized in the rehabilitation model, is succinctly overviewed. With the CSS service configuration and the rehabilitation model providing the historical and conceptual base, the recovery concept, as we currently understand it, is then presented. Page 1 of 13 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 30 HANDOUT Recovery From Mental Illness: The Guiding Vision of the Mental Health Service System in the 1990s Roadmap to Seclusion and Restraint Free Mental Health Services Recovery From Mental Illness—Guiding Vision (continued) The essential components of a CSS have been demonstrated and evaluated since its inception. Test (1984) concluded from her review that programs providing more CSS functions seem to be more effective (with fewer rehospitalizations and improved social adjustment in some cases) than programs that provide fewer CSS functions. More recently, Anthony and Blanch (1989) reviewed data relevant to CSS and concluded that research in the 1980s documented the need for the array of services and supports originally posited by the CSS concept. It appears that the need for the component services of CSS has a base in empiricism as well as in logic. Most comprehensive mental health system initiatives in the 1980s can be traced to the CSS conceptualization (National Institute of Mental Health, 1987). Based on the CSS framework, the Center for Psychiatric Rehabilitation has refined and defined the services fundamental to meeting the wants and needs of persons with long-term mental illness. Table 1 presents these essential client services. The Impact of Severe Mental Illness This new understanding of the importance of a comprehensive, community-based service system is based on a more thorough and clear understanding of that system’s clients. The field of psychiatric rehabilitation, with its emphasis on treating the consequences of the illness rather than just the illness per se, has helped bring to this new service system configuration a more complete understanding of the total impact of severe mental illness. The psychiatric rehabilitation field relied on the World Health Organization’s 1980 classification of the consequences of disease to provide the conceptual framework for describing the impact of severe mental illness (Frey, 1984). Page 2 of 13 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 31 HANDOUT The Community Support System In the mid-1970s, a series of meetings at the National Institute of Mental Health (NIMH) gave birth to the idea of a community support system (CSS), a concept of how services should be provided to help persons with long-term psychiatric disabilities (Turner & TenHoor, 1978). Recognizing that post-deinstitutionalization services were unacceptable, the CSS described the array of services that the mental health system needed for persons with severe psychiatric disabilities (Stroul, 1989). The CSS filled the conceptual vacuum resulting from the aftermath of deinstitutionalization (Test, 1984). The CSS was defined (Turner & Schifren, 1979, p. 2) as “a network of caring and responsible people committed to assisting a vulnerable population meet their needs and develop their potentials without being unnecessarily isolated or excluded from the community.” The CSS concept identifies the essential components needed by a community to provide adequate services and support to persons who are psychiatrically disabled. Roadmap to Seclusion and Restraint Free Mental Health Services Recovery From Mental Illness—Guiding Vision (continued) Service Category Description Consumer Outcome Treatment Alleviating symptoms and distress Symptom relief Crisis intervention Controlling and resolving critical or dangerous problems Personal safety assured Case management Obtaining the services client needs and wants Services accessed Rehabilitation Developing clients’ skills and support related to client’s goals Role functioning Enrichment Engaging clients in fulfilling and satisfying activities Self-development Rights protection Advocating to uphold one’s rights Equal opportunity Basic support Providing the people, places, and things client needs to survive (e.g., shelter, meals, health care) Personal survival assured Self-help Exercising a voice and a choice in one’s life Empowerment Adapted from Cohen, A B., Nemec, P.B., Farkas, M.D., & Forbess, R, (1990). Psychiatric rehabilitation training technology. Case management (trainer package). Boston: Boston University, Center for Psychiatric Rehabilitation. In the 1980s, proponents of psychiatric rehabilitation emphasized that mental illness not only causes mental impairments or symptoms but also causes the person significant functional limitations, disabilities, and handicaps (Anthony, 1982; Anthony & Liberman, 1986; Anthony, Cohen, & Farkas, 1990; Cohen & Anthony, 1984). The World Health Organization (Wood, 1980), unlike mental health policymakers, had already developed a model of illness which incorporated not only the illness or impairment but also the consequences of the illness (disability and handicap). As depicted in Table 2, these terms can be reconfigured as impairment, dysfunction, disability, and disadvantage. This conceptualization of the impact of severe mental illness has come to be known as the rehabilitation model (Anthony, Cohen, & Farkas, 1990). Page 3 of 13 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 32 HANDOUT Table 1 Essential Client Services in a Caring System Roadmap to Seclusion and Restraint Free Mental Health Services Recovery From Mental Illness—Guiding Vision (continued) Table 2 The Negative Impact of Severe Mental Illness Stages I. Impairment II. Dysfunction III. Disability IV. Disadvantage Definitions Any loss or abnormality of psychological, physiological, or anatomical structure or function Any restriction or lack of ability to perform an activity or task in the manner or within the range considered normal for a human being Any restriction or lack of ability to perform a role in the manner or within the range considered normal for a human being A lack of opportunity for an individual that limits or prevents the performance of an activity or the fulfillment of a role that is normal (depending on age, sex, social, cultural factors) for that individual Examples Hallucinations, delusions, depression Lack of work adjustment skills, social skills, ADL skills Unemployment, homelessness Discrimination and poverty Adapted from Anthony, W.A, Cohen, M.R., & Farkas, M.D. (1990). Psychiatric rehabilitation. Boston: Boston University, Center for Psychiatric Rehabilitation. Recovery: The Concept The concept of recovery, while quite common in the field of physical illness and disability (Wright, 1983), has heretofore received little attention in both practice and research with people who have a severe and persistent mental illness (Spaniol, 1991). The concept of recovery from physical illness and disability does not mean that the suffering has disappeared, all the symptoms removed, and/or the functioning completely restored (Harrison, 1984). For example, a person with paraplegia can recover even though the spinal cord has not. Similarly, a person with mental illness can recover even though the illness is not “cured.” Page 4 of 13 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 33 HANDOUT The development of the concept of a comprehensive community support system, combined with the rehabilitation model’s more comprehensive understanding of the impact of severe mental illness, has laid the conceptual groundwork for a new vision for the mental health service system of the 1990s. Based on the insights of the 1970s and 1980s, service delivery promoting recovery from programs and systems will be guided by a vision of promoting recovery from mental illness (Anthony, 1991). Roadmap to Seclusion and Restraint Free Mental Health Services Recovery From Mental Illness—Guiding Vision (continued) Recovery from mental illness involves much more than recovery from the illness itself. People with mental illness may have to recover from the stigma they have incorporated into their very being, from the iatrogenic effects of treatment settings; from lack of recent opportunities for self-determination; from the negative side effects of unemployment; and from crushed dreams. Recovery is often a complex, time-consuming process. Recovery is what people with disabilities do. Treatment, case management, and rehabilitation are what helpers do to facilitate recovery (Anthony, 1991). Interestingly, the recovery experience is not an experience that is foreign to services personnel. Recovery transcends illness and the disability field itself. Recovery is a truly unifying human experience. Because all people (helpers included) experience the catastrophes of life (death of a loved one, divorce, the threat of severe physical illness, and disability), the challenge of recovery must be faced. Successful recovery from a catastrophe does not change the fact that the experience has occurred, that the effects are still present, and that one’s life has changed forever. Successful recovery does mean that the person has changed, and that the meaning of these facts to the person has therefore changed. They are no longer the primary focus of one’s life. The person moves on to other interests and activities. Recovery: The Outcome Recovery may seem like an illusory concept. We still know very little about what this process is like for people with severe mental illness. Yet many recent intervention studies have in fact measured elements of recovery, even though the recovery process went unmentioned. Recovery is a multi-dimensional concept: there is no single measure of recovery, but many different measures that estimate various aspects of it. The recovery vision expands our concept of service outcome to include such dimensions as self-esteem, adjustment to disability, empowerment, and self-determination. However, it is the concept of recovery, and not the many ways to measure it, that ties the various components of the field into a single vision. For service providers, recovery from mental illness is a vision commensurate with researchers’ vision of curing and preventing mental illness. Recovery is a simple yet powerful vision (Anthony, 1991). Page 5 of 13 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 34 HANDOUT In the mental health field, the emerging concept of recovery has been introduced and is most often discussed in the writings of consumers/survivors/clients (Anonymous, 1989; Deegan, 1988; Houghton, 1982; Leete, 1989; McDermott, 1990; Unzicker, 1989). Recovery is described as a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills, and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with limitations caused by illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness. Roadmap to Seclusion and Restraint Free Mental Health Services Recovery From Mental Illness—Guiding Vision (continued) Table 3 provides an overview of the major consumer outcome focus of the essential community support system of services. The services mainly directed at the impairment are the traditional “clinical” services, which in a recovery-oriented system deal with only a part of the impact of severe mental illness (i.e., the symptoms). Major recovery may occur without complete symptom relief. That is, a person may still experience major episodes of symptom exacerbation, yet have significantly restored task and role performance and/or removed significant opportunity barriers. From a recovery perspective, those successful outcomes may have led to the growth of new meaning and purpose in the person’s life. Recovery-oriented system planners see the mental health system as greater than the sum of its parts. There is the possibility that efforts to affect the impact of severe mental illness positively can do more than leave the person less impaired, less dysfunctional, less disabled, and less disadvantaged. These interventions can leave a person not only with “less,” but with “more”—more meaning, more purpose, more success, and more satisfaction with one’s life. The possibility exists that the outcomes can be more than the specific service outcomes of, for example, symptom management and relief, role functioning, services accessed, entitlements assured, etc. While these outcomes are the raison d’etre of each service, each may also contribute in unknown ways to recovery from mental illness. A provider of specific services recognizes, for example, that symptoms are alleviated not only to reduce discomfort, but also because symptoms may inhibit recovery; that crises are controlled not only to assure personal safety, but also because crises may destroy opportunities for recovery; that rights protection not only assures legal entitlements, but also that entitlements can support recovery. As mentioned previously, recovery outcomes include more subjective outcomes such as self-esteem, empowerment, and self-determination. Basic Assumptions of a Recovery-Focused Mental Health System The process of recovery has not been researched. The vagaries of recovery make it a mysterious process, a mostly subjective process begging to be attended to and understood. People with severe disabilities (including psychiatric disabilities) have helped us glimpse the process through their words and actions (Weisburd, 1992). In addition, all of us have directly experienced the recovery process in reaction to life’s catastrophes. Based on information gained from the above, a series of assumptions about recovery can be identified. Page 6 of 13 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 35 HANDOUT A Recovery-Oriented Mental Health System A mental health service system that is guided by the recovery vision incorporates the critical services of a community support system organized around the rehabilitation model’s description of the impact of severe mental illness—all under the umbrella of the recovery vision. In a recovery-oriented mental health system, each essential service is analyzed with respect to its capacity to ameliorate people’s impairment, dysfunction, disability, and disadvantage (see Table 3). Roadmap to Seclusion and Restraint Free Mental Health Services Recovery From Mental Illness—Guiding Vision (continued) Recovery development of new meaning and purpose as one grows beyond the catastrophic effects of mental illness. Impact of Severe Mental Illness Mental Health Services (and Outcomes) Treatment Impairment (Disorder in thought, feelings, and behavior) Dysfunction (Task performance limited) Disability (Role performance limited) Disadvantage (Opportunity restrictions) X X X X X X X X X X (Symptom relief) Crises Intervention X (Safety) Case Management X (Access) Rehabilitation (Role functioning) Enrichment (Self-development) Rights Protection X (Equal opportunity) Basic Support X (Survival) Self-Help X X (Empowerment) 1. Recovery can occur without professional intervention. Professionals do not hold the key to recovery; consumers do. The task of professionals is to facilitate recovery; the task of consumers is to recover. Recovery may be facilitated by the consumer’s natural support system. After all, if recovery is a common human condition experienced by us all, then Page 7 of 13 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 36 HANDOUT Table 3 Focus of Mental Health Services Roadmap to Seclusion and Restraint Free Mental Health Services Recovery From Mental Illness—Guiding Vision (continued) It is important for mental health providers to recognize that what promotes recovery is not simply the array of mental health services. Also essential to recovery are non-mental health activities and organizations, e.g., sports, clubs, adult education, and churches. There are many paths to recovery, including choosing not to be involved in the mental health system. 2. A common denominator of recovery is the presence of people who believe in and stand by the person in need of recovery. Seemingly universal in the recovery concept is the notion that critical to one’s recovery is a person or persons in whom one can trust to “be there” in times of need. People who are recovering talk about the people who believed in them when they did not even believe in themselves, who encouraged their recovery but did not force it, who tried to listen and understand when nothing seemed to be making sense. Recovery is a deeply human experience, facilitated by the deeply human responses of others. Recovery can be facilitated by any one person. Recovery can be everybody’s business. 3. A recovery vision is not a function of one’s theory about the causes of mental illness. Whether the causes of mental illness are viewed as biological and/or psychosocial generates considerable controversy among professionals, advocates, and consumers. Adopting a recovery vision does not commit one to either position on this debate, nor on the use or nonuse of medical interventions. Recovery may occur whether one views the illness as biological or not. People with adverse physical abnormalities (e.g., blindness, quadriplegia) can recover even though the physical nature of the illness is unchanged or even worsens. 4. Recovery can occur even though symptoms reoccur. The episodic nature of severe mental illness does not prevent recovery. People with other illnesses that might be episodic (e.g., rheumatoid arthritis, multiple sclerosis) can still recover. Individuals who experience intense psychiatric symptoms episodically can also recover. 5. Recovery changes the frequency and duration of symptoms. People who are recovering and experience symptom exacerbation may have a level of symptom intensity as bad as or even worse than previously experienced. As one recovers, the symptom frequency and duration appear to have been changed for the better. That is, symptoms interfere with functioning less often and for briefer periods of time. More of one’s life is lived symptom-free. Symptom recurrence becomes less of a threat to one’s recovery, and return to previous function occurs more quickly after exacerbation. 6. Recovery does not feel like a linear process. Recovery involves growth and setbacks, Page 8 of 13 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 37 HANDOUT people who are in touch with their own recovery can help others through the process. Self-help groups, families, and friends are the best examples of this phenomenon. Roadmap to Seclusion and Restraint Free Mental Health Services Recovery From Mental Illness—Guiding Vision (continued) 7. Recovery from the consequences of the illness is sometimes more difficult than recovering from the illness itself. Issues of dysfunction, disability, and disadvantage are often more difficult than impairment issues. An inability to perform valued tasks and roles, and the resultant loss of self-esteem, are significant barriers to recovery. The barriers brought about by being placed in the category of “mentally ill” can be overwhelming. These disadvantages include loss of rights and equal opportunities, and discrimination in employment and housing, as well as barriers created by the system’s attempts at helping, e.g., lack of opportunities for self-determination, disempowering treatment practices. These disabilities and disadvantages can combine to limit a person’s recovery even though one has become predominantly asymptomatic. 8. Recovery from mental illness does not mean that one was not “really mentally ill.” At times people who have successfully recovered from severe mental illness have been discounted as not “really” mentally ill. Their successful recovery is not seen as a model, as a beacon of hope for those beginning the recovery process, but rather as an aberration, or worse yet as a fraud. It is as if we said that someone who has quadriplegia but recovered did not “really” have a damaged spinal cord! People who have or are recovering from mental illness are sources of knowledge about the recovery process and how people can be helpful to those who are recovering. Implications for the Design of Mental Health Systems Recovery as a concept is by no means fully understood. Much research, both qualitative and quantitative, still needs to be done, Paramount to the recovery concept are the attempts to understand the experience of recovery from mental illness from those who are experiencing it themselves. Qualitative research would seem particularly important in this regard. However, it is not too early for system planners to begin to incorporate what we currently think we know about recovery, For example, most first-person accounts of recovery from catastrophe (including mental illness) recount the critical nature of personal support (recovery assumption #2). The questions of system planners are: Should personal support be provided by the mental health system? And if so, how can this personal support be provided? Should intensive care managers fill this role? What about self-help organizations? Should they be expanded and asked to perform even more of this function? Page 9 of 13 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 38 HANDOUT periods of rapid change and little change. While the overall trend may be upward, the moment-to-moment experience does not feel so “directionful.” Intense feelings may overwhelm one unexpectedly. Periods of insight or growth happen unexpectedly. The recovery process feels anything but systematic and planned. Roadmap to Seclusion and Restraint Free Mental Health Services Recovery From Mental Illness—Guiding Vision (continued) Recovery, as we currently understand it, involves the development of new meaning and purposes in one’s life as one grows beyond the catastrophic effects of mental illness. Does the mental health system help in the search for this new meaning? Does it actively seek to provide opportunities that might trigger the development of new life purposes? Is this the type of service professionals and survivors talk about when the value of “supportive psychotherapy” is mentioned? Is there the support of therapists trained to help persons with mental illness control their lives once again—even without fully controlling their mental illness? There are a number of possible stimulants to recovery. These may include other consumers who are recovering effectively. Books, films, and groups may cause serendipitous insights to occur about possible life options. Visiting new places and talking to various people are other ways in which the recovery process might be triggered. Critical to recovery is regaining the belief that there are options from which one can choose—a belief perhaps even more important to recovery than the particular option one initially chooses. Recovery-oriented mental health systems must structure their settings so that recovery “triggers” are present. Boring day treatment programs and inactive inpatient programs are characterized by a dearth of recovery stimulants. The mental health system must help sow and nurture the seeds of recovery through creative programming. There is an important caveat to this notion of recovery triggers. At times the information provided through people, places, things, and activities can be overwhelming. Different amounts of information are useful at different times in one’s recovery. At times denial is needed when a recovering person perceives the information as too overwhelming. At particular points in one’s recovery, denial of information prevents the person from becoming overwhelmed. Information can be perceived as a bomb or a blanket—harsh and hostile or warm and welcome. Helpers in the mental health system must allow for this variation in the time frame of information they are providing—and not routinely and simply characterize denial as nonfunctional. Similarly, the range of emotions one experiences as one recovers cannot simply be diagnosed as abnormal or pathological. All recovering people, whether mentally ill or not, experience strong emotions and a wide range of emotions. Such emotions include depression, guilt, isolation, suspiciousness, and anger. For many persons who are recovering from catastrophes other than mental illness, these intense emotions are seen as a normal part of the recovery Page 10 of 13 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 39 HANDOUT If personal support is characterized as support that is trusting and empathic, do human resource development staff members need to train helpers in the interpersonal skills necessary to facilitate this personal relationship? Quality assurance personnel would need to understand the time it takes to develop such a relationship and figure out ways to assess and document this process. Roadmap to Seclusion and Restraint Free Mental Health Services Recovery From Mental Illness—Guiding Vision (continued) Concluding Comments Many new questions and new issues are stimulated for system planners by a recovery-oriented perspective. While we are nowhere near understanding the recovery concept nor routinely able to help people achieve it, a recovery vision for the 1990s is extremely valuable. A vision pulls the field of services into the future. A vision is not reflective of what we are currently achieving, but of what we hope for and dream of achieving. Visionary thinking does not raise unrealistic expectations. A vision begets not false promises but a passion for what we are doing (Anthony, Cohen, & Farkas, 1990). Previous “visions” that guided the mental health system were not consumer-based. They did not describe how the consumer would ultimately benefit. For example, the deinstitutionalization “vision” described how buildings would function and not how service recipients would function. Similarly, the CSS “vision” described how the service system would function and not the functioning of the service recipients. In contrast, a recovery vision speaks to how the recipients of services would function. Changes in buildings and services are seen in the context of how they might benefit the recovery vision. In contrast to the field of services, biomedical and neuroscience researchers have a vision. They speak regularly of curing and preventing severe mental illness. They have helped to declare the 1990s “the decade of the brain.” Recovery from mental illness is a similarly potent vision. It speaks to the heretofore unmentioned and perhaps heretical belief that any person with severe mental illness can grow beyond the limits imposed by his or her illness. Recovery is a concept that can open our eyes to new possibilities for those we serve and how we can go about serving them. The 1990s might also turn out to be the “decade of recovery.” The author acknowledges contributions from the personnel of the Center for Psychiatric Rehabilitation in the development of this paper. Page 11 of 13 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 40 HANDOUT process. For persons recovering from mental illness, these emotions are too quickly and routinely considered a part of the illness rather than a part of the recovery. The mental health system must allow these emotions to be experienced in a nonstigmatizing and understanding environment. Helpers must have a better understanding of the recovery concept in order for this recovery-facilitating environment to occur Roadmap to Seclusion and Restraint Free Mental Health Services Recovery From Mental Illness—Guiding Vision (continued) Anonymous (1989). How I’ve managed chronic mental illness. Schizophrenia Bulletin, 15, 635-640. Anthony, W.A. (1982). Explaining “psychiatric rehabilitation” by an analogy to “physical rehabilitation.” Psychosocial Rehabilitation Journal, 5(l), 61-65. Anthony, W.A. (1991). Recovery from mental illness: The new vision of services researchers. Innovations and Research, 1(1), 13-14. Anthony, W.A., & Blanch, A.K. (1989). Research on community support services: What have we learned? Psychosocial Rehabilitation Journal, 12(3), 55-81. Anthony, W.A., & Liberman, R.P. (1986). The practice of psychiatric rehabilitation: Historical, conceptual, and research base. Schizophrenia Bulletin, 12, 542-559. Anthony, W.A., Cohen, M.R., & Farkas, M.D. (1990). Psychiatric rehabilitation. Boston: Boston University, Center for Psychiatric Rehabilitation. Cohen, B.F., & Anthony, W.A. (1984). Functional assessment in psychiatric rehabilitation. In A. S. Halpern & M.J. Fuhrer (Eds.), Functional assessment in rehabilitation (pp. 79-100). Baltimore: Paul Brookes. Cohen, K R., Nerner, P.B., Farkas, A.D., & Forbess, R. (1990). Psychiatric rehabilitation training technology; Case management (trainer package). Boston: Boston University, Center for Psychiatric Rehabilitation. Deegan, P. (1988). Recovery: The lived experience of rehabilitation. Psychosocial Rehabilitation Journal, 11(4), 11-19. Frey, W.D. Functional assessment in the ‘80s. A conceptual enigma, a technical challenge. In A. S. Halpern & M.J. Fuhrer (Eds.), Functional assessment in rehabilitation (pp- 11-43). Baltimore: Paul Brookes. Harrison, V. (1984). A biologist’s view of pain suffering and marginal life. In F. Dougherty (Ed.), The depraved, the disabled, and the fullness of life. Delaware: Michael Glazier. Houghton, J.F. (1982). Maintaining mental health in a turbulent world. Schizophrenia Bulletin, 8, 548-551 Leete, E. (1989). How I perceive and manage my illness. Schizophrenia Bulletin, 15, 197-200. McDermott, B. (1990). Transforming depression. The Journal, 1(4), 13-14. National Institute of Mental Health. (1987). Toward a model plan for a comprehensive, community-based mental health system. Rockville, MD: Author. Spaniol, L. (1991). Editorial. Psychosocial Rehabilitation Journal, 14(4), 1. Stroul, B. (1989). Community support systems for persons with long-term mental illness: A conceptual framework. Psychosocial Rehabilitation Journal, 12, 9-26. Page 12 of 13 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 41 HANDOUT References Roadmap to Seclusion and Restraint Free Mental Health Services Recovery From Mental Illness—Guiding Vision (continued) Turner, J.E., & Shifren, I. (1979). Community support systems: How comprehensive? New Directions for Mental Health Services, 2, 1-23. Turner, J.E., & TenHoor, W.J. (1979). The NIMH Community Support Program: Pilot approach to a needed social reform. Schizophrenia Bulletin, 4, 319-348. Unzicker, R. (1989). On my own! A personal journey through madness and re-emergence. Psychosocial Rehabilitation Journal, 13(1), 71-77. Weisburd, D. (Ed.). (1992). The Journal, 3, 2 (entire issue). Wood, P.H. (1980). Appreciating the consequence of disease: The classification of impairments, disability, and handicaps. The WHO Chronicle, 34, 376-380. Wright, B. (1993). Physical disability: A psychosocial approach. New York: Harper Row. Source: Anthony, W. (1993). Recovery from mental illness: The guiding vision of the mental health service system in the 1990s. Psychosocial Rehabilitation Journal, 16(4), 11-23. Page 13 of 13 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 42 HANDOUT Test, M.A. (1984). Community support programs. In A.S. Bellack (Ed.), Schizophrenia treatment, management and rehabilitation (pp. 347-373). Orlando, FL: Grune & Stratton. Roadmap to Seclusion and Restraint Free Mental Health Services RESOURCES Recovering Your Mental Health Consumer Information Series, Volume 4 SMA-3504 Printed 2002 Building Self-Esteem Consumer Information Series, Volume 5 SMA-3715 Printed 2002 Making and Keeping Friends Consumer Information Series, Volume 6 SMA-3716 Printed 2002 Dealing with the Effects of Trauma Consumer Information Series, Volume 7 SMA-3717 Printed 2002 Developing a Recovery and Wellness Lifestyle Consumer Information Series, Volume 8 SMA-3718 Printed 2002 Speaking Out for Yourself Consumer Information Series, Volume 9 SMA-3719 Printed 2002 Action Planning for Prevention and Recovery Consumer Information Series,Volume 10 SMA-3720 Printed 2002 These publications can be accessed electronically at www.samhsa.gov. For copies of the publications, please call SAMHSA’s National Mental Health Services Information Center at 800-789-2647. Module 4 Understanding Resilience and Recovery from the Consumer Perspective 43 HANDOUT Recovering Your Mental Health Self-Help Guides Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 4 - REFERENCES Anthony, W. (1993). Recovey from mental illness: The guiding vision of the mental health service system in the 1990’s. Psychosocial Rehabilitation Journal, 16(4), 11-23. Bernard, B. (1992). Fostering resilience in kids: Protective factors in the family, school. and community. Prevention Forum, 12(3), 1-2, 12-14. Byrne, C.M., Woodside, H., Landeen, J., Kirkpatrick, H., Bernardo, A., & Pawlick, J. (1994). The importance of relationships in fostering hopes. Journal of Psychosocial Nursing, 32(9), 31-34. Davis, N.J. (1999). Resilience: Status of the research and research-based programs. Rockville, MD: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services. Davidson, L., & Strauss, J.S. (1992). Sense of self in recovery from severe mental illness. British Journal of Medical Psychology, 65, 131-145. Deegan, P. (1988). Recovery: The lived experience of rehabilitation. Psychosocial Rehabilitation Journal, 11(4), 11-19. Deegan, P. (1993). Recovering our sense of value after being labeled mentally ill. Journal of Psychosocial Nursing and Mental Health Services, 31(4), 7-11. Deegan, P. (1996). Recovery as a journey of the heart. Psychiatric Rehabilitation Journal, 19(3), 91-98. Deegan, P. (2001). Recovery as a self-directed process of healing and transformation. Online at http://intentionalcare.org/articles/articles_trans.pdf. DeSisto, M., Harding, C.M., McCormick, R.V., Ashikaga, T. & Brooks, G.W. (1995). The Maine and Vermont three-decade studies of serious mental health illness. II. Longitudinal course comparisons. British Journal of Psychiatry, 167, 338-342 Farber, S. (1993). Madness, heresy, and the rumor of angels: The revolt against the mental health system. Chicago: Open Court Publishing. Fisher, D. (1999). Someone who believed in them helped them to recover. Lawrence, MA: National Empowerment Center. Francell, Jr., E.G. (1994). Medication: The foundation of recovery. Innovations and Research, 3(4), 31-40. Freese, F.J., & Davis, W.W. (1997). The consumer-survivor movement, recovery, and consumer-professionals. Professional Psychology: Research and Practice, 28(3), 243-245. Gottlieb, D. (1991). Voices in the family. New York: Signet. Harding, C.M., (2001). Quoted in New depression and anxiety treatment goals defined. Online at www.thestressoflife.com/new_depression_and_anxiety_treat.htm. Page 1 of 2 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 44 HANDOUT Anthony, W. (1991). Recovering from mental illness: The new vision of services researchers. Innovations and Research 1(1), 13-14. Roadmap to Seclusion and Restraint Free Mental Health Services Module 4 - References (continued) Jennings, A. (1994). Imposing stigma from within: Retraumatizing the victim. Resources 6(3), 11-15. LaLime, W. (1990). Untitled speech used as part of Lowell M-POWER’s anti-stigma workshop. Lowell, MA. Cited in Deegan, P. (1990). Spirit breaking: When the helping professions hurt. The Humanistic Psychologist, 18(3), 301-313. Leete, E. (1989). How I perceive and manage my illness. Schizophrenia Bulletin, 15, 197-200. Lefcourt, H.M. (1973). The function of the illusions of control and freedom. American Psychologist, 28, 417-425. Marsh, D.T., & Johnson, D.L. (1997). The family experience of mental illness: Implications for intervention. Professional Psychology: Research and Practice, 28(3), 229-237. Masten, A.A., & Powell, J.L. (2003). A resilience framework for research, policy, and practice. In S.S. Luthar (Ed.), Resilience and vulnerabilities: Adaptation in the context of childhood adversities (pp. 1-25). New York: Cambridge University Press. National Association of Consumer/Survivor Mental Health Administrators. (2000). In Our Own Voices Survey. An unpublished survey. Ralph, R.O. (2000). A synthesis of a sample of recovery literature 2000. Alexandria, VA: National Technical Assistance Center for State Mental Health Planning, National Association for State Mental Health Program Directors. Resnick, M.D, (2000). Protective factors, resiliency, and healthy youth development. Adolescent Medicine, 11 (1) 157-165. Resnick, M.D, Bearman, P.S., Blum, R.W., Bauman, K.E., Harris, K.M., Jones, J., Tabor, J., Beuhring, T., Sieving, R.E., Shew, M., Ireland, M., Bearinger, L.H., & Udry, R. (1997). Protecting adolescents from harm: Findings from the national longitudinal study on adolescent health. Journal of the American Medical Association, 278(10), 823-832. Rogers, J. (1995). Work is key to recovery. Psychosocial Rehabilitation Journal, 184(4), 5-10. Seligman, M.E.P. (1992). Helplessness: On depression, development, and death (2nd ed.). New York: Freeman. Small, R.D., & Sudar, M. (1995). Islands of brilliance. Psychosocial Rehabilitation Journal, 18(3), 37-50. Spaniol, L., Gagne, C., & Koehler, M. (1997). Recovery from serious mental illness: What it is and how to assist people in their recovery. Continuum 4(4), 3-15. Sullivan, W.P. (1994). A long and winding road: The process of recovery from severe mental illness. Innovations and Research, 3(3), 11-19. U.S. Department of Health and Human Services. (1999). Mental health: A report of the Surgeon General, Rockville, MD: Author. Unzicker, R. (1989). On my own: A personal journey through madness and re-emergence. Psychosocial Rehabilitation Journal, 13(1), 71-77. Page 2 of 2 Module 4 Understanding Resilience and Recovery from the Consumer Perspective 45 HANDOUT Harding, C.M., Zubin, J., & Strauss, J.S. (1992). Chronicity in schizophrenia revisited. British Journal of Psychiatry, 161(Suppl.18), 27-37. Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 5 Strategies to Prevent Seclusion and Restraint 1 Roadmap to Seclusion and Restraint Free Mental Health Services Module 5 Strategies to Prevent Seclusion and Restraint “It is rather impressive how creative people can be when restraint is simply not a part of the treatment culture.” —John N. Follansbee, M.D. JCAHO testimony,1999 Learning Objectives Upon completion of this module the participant will be able to: • Define and outline the benefits, underlying values, and key elements of consumer-driven supports. • Develop and apply a Wellness Recovery Action Plan (WRAP). • Identify benefits of drop-in centers, recovery through the arts, technical assistance centers, and service animals. • Name key elements to implement a comfort room and describe what staff can do to support these consumer-driven supports. • Guide a consumer in developing a Psychiatric Advance Directive/Prime Directive. • Identify and implement effective communication strategies that prevent the use of seclusion and restraints, including Alternative Dispute Resolution and Mediation. Module 5 Strategies to Prevent Seclusion and Restraint 2 Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 5: STRATEGIES TO PREVENT SECLUSION AND RESTRAINT Background for the Facilitators. . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Presentation (4 hours, 45 minutes) . . . . . . . . . . . . . . . . . . Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Wellness Recovery Action Plan (WRAP) . . . . . . . . . . . . . . . . . Exercise: Developing a Wellness Recovery Action Plan . . . (30 minutes) Drop-In Centers. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Recovery Through the Arts . . . . . . . . . . . . . . . . . . . . . . . . . Comfort Rooms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Service Animals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Psychiatric Advance Directives. . . . . . . . . . . . . . . . . . . . . . . Exercise: Creating My Own Psychiatric Advance Directive . (30 minutes) Prime Directives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Communication Strategies . . . . . . . . . . . . . . . . . . . . . . . . . Exercise: How Hard Can Communication Be? (15 minutes) . Alternative Dispute Resolution/Mediation . . . . . . . . . . . . . . . Technical Assistance Centers . . . . . . . . . . . . . . . . . . . . . . . . Handouts for Participants . . . . . . . . . . . . . . . . . . . . . . . . . Examples of Consumer WRAPs . . . . . . . . . . . . . . . . . . . . . Developing a WRAP . . . . . . . . . . . . . . . . . . . . . . . . . . . . . How to Set Up a Comfort Room . . . . . . . . . . . . . . . . . . . . . Why Should I Fill Out a Psychiatric Advance Directive? . . . . . Ten Tips for Completing an Effective Advance Directive . . . . Psychiatric Advance Directive Practice Worksheet . . . . . . . . Six Essential Steps for Prime Directives . . . . . . . . . . . . . . . Anticipated Benefits of Prime Directives . . . . . . . . . . . . . . . Children’s and Adolescents’ Mental Health Services Technical Assistance and Research Centers Research, Training, and Technical Assistance Centers . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Module 5 . . . . . . . . . . . . . . . . . . . . . . . 13 . 13 . 16 . 20 . . . . . . . . . . . . . . . . . . . . . . . . 21 23 23 26 27 29 . . . . . . . . . . . . . . . . . . . . 30 37 38 46 49 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50 . 50 . 55 . 57 . 58 . 59 . 61 . 64 . 65 . 66 . . . . . 67 . . . . . 72 Strategies to Prevent Seclusion and Restraint 3 Roadmap to Seclusion and Restraint Free Mental Health Services Overview “Consumer/survivor operated self-help programs are a relatively recent phenomenon. Over the last twenty years, consumers/survivors have shifted from passive recipients of mental health services to become increasingly involved in planning, providing, and evaluating mental health services. The U.S. Department of Health and Human Services cites the following benefits of self-help groups: peer support, coping strategies, role models, affordability, education, advocacy, non-stigmatizing, and “helper’s principle.” In addition, several other features distinguish self-help from other forms of professional services: non-reliance on professionals, voluntary participation, egalitarian and peer-based, non-judgmental, and informality” (U.S. Department of Health and Human Services, 2001). Self-help is a concept, not a single program model. Self-help is a way in which people become empowered, begin to think of themselves as competent individuals and present themselves in new ways to the world. Self-help, by its very nature, combats stigma and discrimination. The negative images of mental health consumers as needy and helpless ultimately must give way to the reality of consumers managing their own programs and taking on increased responsibility for their own lives. Consumer-run programs that develop independently differ from those that grew directly out of mental health system initiatives to promote self-help. Members of mental health consumer movement programs tend to be skeptical about the value of the mental health system and traditional psychiatric treatment. Individuals usually gravitate to consumer movement programs because they have had negative experiences in the mental health system. Often they are angry and the program members see their anger as healthy. At the same time, members, despite their distrust of the system, may simultaneously be involved in professionally run programs. Members of consumer-run services are free to combine their participation in selfhelp groups with professionally run services, in whatever proportion and combination each member determines. There is no question that self-help programs foster autonomy. Members are encouraged to look to themselves and to one another for support and understanding, and to see themselves as having strengths and abilities. The experience of being a helper is empowering. Encouraging group members to turn to one another develops and strengthens natural support networks. This helps to end the isolation that is characteristic of many who have a mental illness. Similar to other kinds of groups and organizations, consumer-run programs may experience problems and difficulties. This can be discouraging to group members and may serve to confirm some of the negative beliefs about themselves. These experiences also have a positive aspect since they can be used to help members see that problems and difficulties are normal events Module 5 Strategies to Prevent Seclusion and Restraint 4 BACKGROUND BACKGROUND FOR THE FACILITATORS: CONSUMER STRATEGIES TO PREVENT SECLUSION AND RESTRAINT Roadmap to Seclusion and Restraint Free Mental Health Services Successfully functioning self-help groups also serve indirectly to educate clinicians and family members who initially may have been doubtful of a group’s ability to manage itself. Either by direct observance of a group’s activities, or through hearing group members make presentations about their work, many former skeptics have become convinced of the value of self-help and have come to see the strength and abilities of psychiatrically labeled people, not just their deficits and needs. Through successes experienced in self-help groups, members are enabled to take a stronger role in advocating for their own needs within the larger mental health system. Empowerment within the groups leads to a sense that members should have a say in mental health matters generally and a rejection of the role of passive service recipient. Group members find themselves moving naturally into the role of advocate and representing the needs of consumers through membership on panels, boards, committees. and the like. This may require some accommodation on the part of other members, such as administrators, policymakers, legislators, family members, and others who typically have listened to everyone but consumers about consumer needs. Direct care staff, such as psych techs, nurses, and therapists, play a critical role in the elimination of seclusion and restraint. This module explores how communication that includes listening as well as speaking can be an effective tool, especially in times of crisis. This module also explores environmental factors and the role they can play in behavior and mood. Establishing “comfort rooms” is one tool that can add to the efforts to eliminate seclusion and restraint. And finally, Alternative Dispute Resolution and mediation are more formalized strategies that staff can employ. Although both Alternative Dispute Resolution and mediation do require special training beyond the scope of this manual, it is well worth the effort. Consumers, once given the opportunity, learn to speak for themselves. Staff learns new techniques that minimize the need for adversarial techniques. Mediation promotes dialogue and fosters a less confrontational atmosphere. On the national level, all staffs are being urged to reduce and/or eliminate the use of seclusion and restraint. Charles Curie, SAMHSA Administrator, sets his agenda as follows. “Reducing use of seclusion and restraint of individuals in mental health treatment is one of my major priorities. Seclusion and restraint—with their inherent physical force, chemical or physical bodily immobilization and isolation—do not alleviate human suffering. They do not change behavior. And they do not help people with serious mental illness better manage the Module 5 Strategies to Prevent Seclusion and Restraint 5 BACKGROUND as people work together and that the group has the ability to solve problems in the same way that other groups do. In this way power struggles, personality conflicts, or differences in organizational style become recognized as “normal problems” rather than being specific to people who have been psychiatrically labeled. Solving these problems becomes a confirmation that group members have resources to cope with life’s ups and downs. Roadmap to Seclusion and Restraint Free Mental Health Services Wellness Recovery Action Plan (WRAP) Literature on the WRAP is found in the works of Mary Ellen Copeland, the developer of the plan and a mental health educator/consumer from Vermont. The WRAP appears in her books Wellness Recovery Action Plan (2000) and Winning Against Relapse (1999). Portions of the WRAP and the use of the Wellness Toolbox also appear in her books Living Without Depression and Manic Depression: A Workbook for Maintaining Mood Stability (1994) and The Depression Workbook (2001). The WRAP can be used by anyone who wants to create positive changes in the way they feel, or increase their enjoyment in life. WRAP is a structured system for monitoring symptoms through: • Planned responses, that reduce, modify, or eliminate symptoms • Planned responses from others when you need help to make a decision, take care of yourself, or keep yourself safe The WRAP is divided into six sections: • Daily Maintenance Plan • Triggers • Early Warning Signs • Symptoms that Occur When the Situation is Worse • Crisis Plan • Post Crisis Plan Mary Ellen Copeland’s resources are available through her Web site: www.mentalhealth recovery.com or by checking your local bookstore. In addition to books and workbooks, audio and videotapes are available. The booklet, Recovering Your Mental Health: A Self-Help Guide is available for free from the Center for Mental Health Services. This booklet was developed with the assistance of a focus group of ten people from around the country, people who are working on their own recovery. You can get free copies from SAMHSA’s National Mental Health Information Center at 1-800-789-2647 or www.mentalhealth.samhsa.gov. Refer to booklet SMA#3504. We strongly recommend that facilitators read this resource and have a copy on hand for the training. Module 5 Strategies to Prevent Seclusion and Restraint 6 BACKGROUND thoughts and emotions that can trigger behaviors that can injure them or others. Seclusion and restraint are safety measures of last resort. They can serve to retraumatize people who already have had far too much trauma in their lives. It is my hope that we can create a single, unified policy—a set of primary principles that will govern how the Federal Government approaches the issue of seclusion and restraint for people with mental and addictive disorders” (Curie, 2002). Roadmap to Seclusion and Restraint Free Mental Health Services (Source: www.mhselfhelp.org) A consumer run drop-in center is a central place for consumer self-help, advocacy, and education about mental health issues and resources. Through a drop-in center, consumers develop their own program to supplement existing mental health services or provide an alternative to those services. “My concept of a drop-in center is a self-help clubhouse that serves as a meeting place for socialization and advocacy efforts. It’s an opportunity to empower consumers through involvement in these activities.” —Brian Disher Consumers are often socially isolated and lonely. They may not have the emotional support they need to help them deal with their problems. At a drop-in center, consumers can come together to make friends and socialize. The drop-in center offers a non-judgmental atmosphere, acceptance, and true empathy from people who have “been there.” It can be hard for consumers to find these qualities in programs managed by mental health professionals, in their families, and in the community. Instead of focusing on whether people are sick and in need of treatment, drop-in center activities focus on the wellness, capabilities, and talents of their participants. Through joining in a variety of meaningful activities, consumers build their self-confidence, self-esteem, and employment skills. Drop-in center activities vary depending on the particular wishes and needs of the consumers involved. These activities may include self-help group meetings (also called mutual support or rap sessions); weekly or monthly socials or parties; guest speakers; a consumer speakers’ bureau or “mental health players” group as a community-education project; individual and systems advocacy to protect people’s rights, help people get services and/or financial benefits, and improve mental health services; a referral bank for mental health services; and assistance with employment or housing searches, such as a roommate referral network. A drop-in center may also simply be a place to come and talk over a free cup of coffee. Recovery Through the Arts (Source: Reaching Across with the Arts: A Self-Help Manual for Mental Health Consumers, edited by Gayle Bluebird) We strongly encourage you to read Reaching Across with the Arts: A Self-Help Manual for Mental Health Consumers as background for teaching this section. To order, write to Blue Bird Consultants, Gayle Bluebird, 110 Charley Ave., Ft. Lauderdale, FL 33312, call (954) 967-1493, or e-mail gayleb@advocacycenter.org. The manual provides a wonderful overview of the many modalities of arts that can be used as empowerment tools and offers excellent examples of artwork. Module 5 Strategies to Prevent Seclusion and Restraint 7 BACKGROUND Drop-In Centers Roadmap to Seclusion and Restraint Free Mental Health Services The mental health system is beginning to recognize the importance of art. Art therapy has been a part of the hospital environment, but many art therapists have been interpreters of art instead of helpful art instructors. A self-help approach to art encourages consumers to do their work without being scrutinized for pathology. Artists must feel that anything they create is acceptable. There are many modalities that can be used in recovery through the arts including journal writing, poetry, music, and alternative healing methods. Susan Spaniol, arts professor at Lesley College in Massachusetts, writes extensively on the subject of art therapy. Her Web site is www.lesley.edu/faculty/estrella/spaniol.html. Comfort Rooms Our environment impacts our mood and behavior. Health care has been using the concept of “comfort rooms” in a variety of settings for many years. For example, some hospitals have special rooms for family members while they are waiting for their loved ones during surgery. Often, oncology units have rooms furnished with couches, fish tanks, and reading materials. Birthing centers market a “home-like atmosphere.” The Mayo Clinic even has a room filled with reclining chairs and soft lighting for consumers and families to use at their leisure. Most inpatient psychiatric facilities do not convey a warm and welcoming environment. The walls are often stark white with few home-like decorations. The sparse furnishings are often outdated. Gayle Bluebird has used her innovative work in using comfort rooms as a preventive tool to reduce the need for seclusion and restraint at Atlantic Shores Hospital in Florida. Comfort rooms were one part of an overall task force plan that successfully reduced the use of seclusion and restraints. Gayle Bluebird originally developed the material on comfort rooms. Please give her credit as you are presenting this material. As people diagnosed with mental illnesses are empowered in their recovery process, we must listen to what they have to say about their surroundings and environment. We as staff, get to go home to our own “comfort rooms” at the end of the shift. Let’s provide the same opportunities for the people we serve. Module 5 Strategies to Prevent Seclusion and Restraint 8 BACKGROUND The arts can serve as a vehicle for creative self-expression, social change, and personal empowerment. They enable people who have been labeled with stigmatizing diagnoses to convey their personal experiences of madness and recovery to others. Arts can be used as a means of self-healing and spiritual growth—for connecting mind, body, and spirit. The ability to experiment and explore one’s inner self through a variety of mediums helps to build self-confidence and self-worth. Roadmap to Seclusion and Restraint Free Mental Health Services Service Animals Mental health service providers are increasingly recognizing that service animals are an excellent resource for consumers. Service animals can provide companionship, physical assistance, and often help develop therapeutic bonds that provide psychological, emotional, and social benefits. Scientific research has begun to validate the role of service animals/ service dogs for people with disabilities. A 1996 study by Allen and colleagues found that people with disabilities that had service dogs scored higher for psychological well-being, self-esteem, community integration, and the amount of control they could exert over their environment. The same study also found that the number of human care hours decreased by an average of 78 percent—which represents a significant savings in health care costs (Allen, 1996). Other documented research benefits include improved self-esteem, independence, social acceptance, lowered blood pressure, moderation of stress, improved motivation, decreased serum cholesterol, and mitigation of the effects of loneliness. The Americans with Disabilities Act (ADA Title III, 28 Code of Federal Regulations Sect. 36.104) states that a service animal is any animal that is individually trained to help a person with a disability. By law, service animals are not pets and they may be of any breed or size. Service animals can do mobility, hearing, guide, seizure alert, emotional support, and other work needed by the person because of their disability (Federal ADA 28 CFR Sect. 38.302). State laws protect the rights of individuals with disabilities to be accompanied by their trained service animals in taxis, buses, stores, restaurants, doctors’ offices, school, parks, housing, and other public places. If you are not familiar with service animals, please look them up on the Web before presenting this section. One place to start is www.deltasociety.org. If possible, find a local consumer to come in and talk about his or her service animal. Psychiatric Advance Directive (PAD) (Adapted from www.nmha.org and www.bazelon.org) In the past 30 years, thinking in the field of medicine has shifted significantly. Years ago, the physician made all of the decisions related to health care. Today, the “patient” has a much stronger voice and is a partner in making decisions about his or her own health care. Module 5 Strategies to Prevent Seclusion and Restraint 9 BACKGROUND This section includes a definition of a comfort room, items that might be included in a comfort room, guidelines for using a comfort room, an exercise to identify characteristics of calming rooms, the importance of input and feedback from people diagnosed with mental illnesses, and a step-by-step plan for establishing a comfort room. If the participants you are working with already use the concept of a comfort room, you may want to skim over this material. Roadmap to Seclusion and Restraint Free Mental Health Services Psychiatric advance directives offer several key benefits. Correctly implemented and executed, they can: • Promote individual autonomy and empowerment in the recovery from mental illness; • Enhance communication between individuals and their families, friends, healthcare providers, and other professionals; • Protect individuals from being subjected to ineffective, unwanted, or possibly harmful treatments or actions; and • Help in preventing crises and the resulting use of involuntary treatment or safety interventions such as restraint or seclusion. Anyone creating an advance directive must be able to do so without coercion, with choices regarding implementation and revocability, and with full knowledge and understanding of the implications of his or her decisions. Most States require the appointment of an agent or proxy in order for an advance directive to be valid. The agent can be authorized to make decisions about the person’s health care that may or may not be in a PAD. It is critical that the agent be someone who can be trusted and who understands the wishes of the person diagnosed with a mental illness. In nearly every State, PADs are irrevocable after the loss of capacity to make informed decisions. Reasons why a PAD may be overridden include (1) a court order to prevent physical injury; (2) after a specified period of time if a particular treatment choice is unsuccessful; (3) “emergency” situations, and (4) a civil commitment. In most States, the agent cannot make decisions unless the person diagnosed with a mental illness is determined unable to make decisions. Prime Directive The prime directive for young people under the age of 18 is based on the advance directive. My Prime Directive and its companion, My Prime Directive Journal (Tenney, 2001) are selfhelp tools for young people and were developed by Lauren Tenney of the New York State Office of Mental Health, Bureau of Children and Families. Their purpose is to open the lines of communication between young people and the professionals who are serving them. It gives young people a voice about the services they are receiving. The young person can choose to share or not to share their directive and journal. My Prime Directive Journal was designed to offer young people hope for the future, educate them about alternative coping mechanisms, and outline a concrete way for them to start planning for the rest of their lives. The first part of the journal includes notes that include insights Module 5 Strategies to Prevent Seclusion and Restraint 10 BACKGROUND A psychiatric advance directive offers a clear written statement of an individual’s medical treatment preferences or other expressed wishes or instructions. It can also be used to assign decision-making authority to another person who can act on that person’s behalf during times of incapacitation. Roadmap to Seclusion and Restraint Free Mental Health Services The journal also encourages young people to think about things such as “I feel my best/worst when...” “The real me is…” “Someday I’d like to…” “Ten years from now I’d like my life to be or not to be…” and “For my life to look like that in 10 years, I would have to do the following things in the next 5 years…” Young people can poignantly articulate what it is they think they need from the mental health system. These self-help tools give them an opportunity to express their wishes in an organized manner. Communication Strategies Most mental health workers have extensive training in active listening. The goal of this section is not necessarily to teach new skills, but to provide an opportunity to hear things in new ways. Communication is especially critical in times of crises. As leaders, it is important not only to communicate the viewpoint of people diagnosed with a mental illness, but also to carefully listen to the perspectives of mental health workers. They, too, have experienced trauma and are struggling in their own ways within the system. By creating a dialogue, this section sets the tone for more the complicated issues that follow. This section includes issues of power and control, the use of respectful language, types of listening and necessary conditions for listening, ways of verbally responding, things people diagnosed with a mental illness would like to hear, humor, and roadblocks to active listening. Alternative Dispute Resolution/Mediation Alternative dispute resolution (ADR) techniques have been widely used in a variety of settings such as education, employment, and family disputes. Mental health settings have been slow to adopt these techniques. These techniques include mediation, negotiation, facilitation, conciliation, and dialogue. The Center for Conflict Management in Mental Health, based at the University of South Florida, is working to change this. One major difference in the mental health setting is that there is unequal power between providers and consumers. The Center for Conflict Management in Mental Health provides different services. Some of these include product development and testing, research and evaluation, consultation and technical assistance, information sharing, and conflict management skills training. This training is for consumers, family members, mental health providers, and mental health administrators. They also sponsor national and regional conferences and provide workshops in mediation skills. Module 5 Strategies to Prevent Seclusion and Restraint 11 BACKGROUND such as “It’s okay to be different,” “No matter where you have been or what you have been through, you can move on,” and “Don’t let people’s judgments affect you. Be confident who you are and accept yourself.” Roadmap to Seclusion and Restraint Free Mental Health Services Judi Higgenbotham, Human Rights Coordinator at Arizona State Hospital in Phoenix, states, “It almost always boils down to a communication issue—the doctor or treatment team either hasn’t listened to what the consumer is saying or hasn’t explained things well”(Blanch, 2000). The Center for Conflict Management in Mental Health believes that alternative conflict resolution strategies can minimize the need for and the consequences of adversarial techniques. This preserves dignity, enhances empowerment, and promotes recovery. Mediation is a process where parties distance themselves from their positions and discover the underlying reason or interest in their positions. It is a process for people to discover their own solutions. Mediation promotes dialogue. Consumers and family members have been trained as mediators in some States. Ohio has taken the lead. It has revised its consumers’ rights regulations to include mediation at any stage. An Associate Professor of Nursing and Psychiatry at the Ohio State University notes, “This is the beginning of a cultural change in the mental health field. Conflict resolution is so compatible with the recovery movement—they mesh together completely. Consumers learn to speak for themselves and have control over their lives” (Blanch, 2000). Mediation fosters a less confrontational atmosphere. Technical Assistance Centers The Substance Abuse and Mental Health Services Administration, Center for Mental Health Services supports technical assistance centers and the National Institute on Disability and Rehabilitation Research. Services may include technical assistance, information and referrals, on-site consultation, training, library services, publications, annotated bibliographies, and other resources. Many services are available free of charge, but in some cases, charges may apply. The technical assistance centers can be used as a resource for up-to-date information relating to the elimination of seclusion and restraint. Module 5 Strategies to Prevent Seclusion and Restraint 12 BACKGROUND Laurie Curtis, a co-author of a curriculum on managing conflict in mental health systems, points out, “Most mental health professionals support consumer choice, as long as everyone agrees” (Blanch, 2000). She emphasizes that conflict management can help mental health professionals and consumers understand concepts such as consumer directed services in new ways. Roadmap to Seclusion and Restraint Free Mental Health Services Welcome participants, review names, and make sure everyone has a nametag or name tent. It may be helpful to provide a quick review of Module 4: Understanding Resilience and Recovery from the Consumer Perspective. Begin Module 5 by going over the learning objectives. Learning Objectives Upon completion of this module the participant will: • Define and outline the benefits, underlying values, and key elements of consumer-driven supports • Develop and apply a Wellness Recovery Action Plan (WRAP) • Identify benefits of drop-in centers, recovery through the arts, research and technical assistance centers, and service animals. • Name key elements to implement a comfort room and describe what staff can do to support these consumer-driven supports. • Guide a consumer in developing a Psychiatric Advance Directive/Prime Directive • Identify and implement effective communication strategies that prevent the use of seclusion and restraints, including Alternative Dispute Resolution and Mediation Overview • Over the past 20 years, consumers have shifted from being passive recipients of mental health treatment to becoming increasingly involved in planning, providing, and evaluating mental health services. • Direct care staff, such as psych techs, nurses, and therapists, play a critical role in the elimination of seclusion and restraint. • On the national level, all staff are being called on to reduce and/or eliminate the use of seclusion and restraint. • Charles Curie, SAMHSA Administrator, sets his agenda as follows. Module 5 Strategies to Prevent Seclusion and Restraint 13 PRESENTATION PRESENTATION Roadmap to Seclusion and Restraint Free Mental Health Services Charles Curie • Consumer-driven supports can be divided into two categories: ○ Support systems which consumers develop, run, evaluate, and maintain on their own, such as drop-in centers, crisis teams, art co-ops, and peer support. ○ Contributions consumers make to traditional mental health systems by being involved in program development, policy formation, program evaluation, quality assurance, system designs, education of mental health service providers, and provision of direct services. • “In order to maximize their potential contributions, their involvement should be supported in ways that promote dignity, respect, acceptance, integration, and choice. Support provided should include whatever financial, educational, or social assistance is required to enable their participation” (Position Statement on Consumer Contributions to Mental Health Service Delivery Systems from the National Association of State Mental Health Program Directors, 1998). • This training will focus primarily on support systems that consumers develop, run, evaluate, and maintain. • First, let’s look at the research-based evidence related to consumer-driven supports. • The U.S. Department of Health and Human Services cites the following General Benefits of Consumer-Driven Supports (DHHS, 2001): Module 5 Strategies to Prevent Seclusion and Restraint 14 PRESENTATION “Reducing use of restraint and seclusion of individuals in mental health treatment is one of my major priorities. Seclusion and restraint - with their inherent physical force, chemical or physical bodily immobilization and isolation - do not alleviate human suffering. They do not change behavior. And they do not help people with serious mental illness better manage the thoughts and emotions that can trigger behaviors that can injure them or others. Seclusion and restraint are safety measures of last resort. They can serve to retraumatize people who already have had far too much trauma in their lives. It is my hope that we can create a single, unified policy a set of primary principles that will govern how the Federal government approaches the issue of seclusion and restraint for people with mental disorders.” Roadmap to Seclusion and Restraint Free Mental Health Services • Self-help is a way in which people become empowered and begin to think of themselves as competent individuals and present themselves in new ways to the world. • Fosters self-advocacy • Fosters autonomy • Ends isolation • Educates family and providers Underlying Values of Consumer Self-Help Include: Module 5 • Empowerment • Independence • Responsibility • Choice • Respect & Dignity • Social Action Strategies to Prevent Seclusion and Restraint 15 PRESENTATION General Benefits of Consumer-Driven Supports (CDS) Roadmap to Seclusion and Restraint Free Mental Health Services • Peer Support • Hope • Recovery Wellness Recovery Action Plan • Wellness Recovery Action Plan = WRAP. • Mary Ellen Copeland is the developer of the WRAP and is a mental health educator/ consumer from Vermont. • She has written several books, including Wellness Recovery Action Plan (1997). If possible, please have a copy of this book to pass around. • Her Web site, www.mentalhealthrecovery.com, is a great resource. • One can develop a WRAP for work, using the same categories. It would revolve around a work plan environment. • A teen WRAP is also available and is modeled after the original WRAP. • The WRAP can be used by anyone who wants to create positive changes in the way they feel or increase their enjoyment in life, including those who do not have a mental illness. It works well for those dealing with chronic physical illnesses as well. Module 5 Strategies to Prevent Seclusion and Restraint 16 PRESENTATION Key Elements for Consumer/Survivor Self-Help: Roadmap to Seclusion and Restraint Free Mental Health Services • Planned responses that reduce, modify, or eliminate symptoms • Planned responses from others when you need help to make a decision, take care of yourself, or keep yourself safe • The WRAP stems from a self-care paradigm—which places the emphasis for health on the consumer, not the medical system. • The WRAP assumes it is the responsibility of each individual to do self-care to maintain optimum health. Module 5 Strategies to Prevent Seclusion and Restraint 17 PRESENTATION The Wellness Recovery Action Plan (WRAP) is a structured system for monitoring symptoms through Roadmap to Seclusion and Restraint Free Mental Health Services • Daily Maintenance Plan (including Wellness Toolbox) • Triggers • Early Warning Signs • Symptoms that Occur When the Situation is Worse • Crisis Plan • Post Crisis Plan • The Daily Maintenance Plan includes writing down and reminding ourselves of the things we all need to do every day to maintain our wellness. • On the surface, the Daily Maintenance Plan may seem simple; however, it is a good reminder of what “being well” feels like. • The Wellness Toolbox is a list of things that help us stay healthy and on track. • Triggers are external events or circumstances that, if they happen, may produce symptoms that are or may be very uncomfortable. We talked about some of these in Module 2: Understanding the Impact of Trauma. • It’s important to recognize triggers and respond to them so symptoms don’t get worse. • Early warning signs are internal, subtle signs of change that may be unrelated to reactions to stressful situations. • Again, being aware of early warning signs helps prevent symptoms from worsening. • Symptoms may progress to the point where they are very uncomfortable, serious, even dangerous, and where the situation has gotten much worse but has not yet reached a crisis. • At this point, it is necessary to take immediate action to prevent a crisis. • Crisis situations mean that others will need to take responsibility for our care. • This section is often the most difficult section to develop and needs to be done when you are feeling well. • The Post Crisis Plan is a new addition to the WRAP and is different from other parts of the WRAP. It changes as you heal. • It may be helpful to refer to your Wellness Toolbox. • WRAP assists in keeping one well after release from the hospital. Module 5 Strategies to Prevent Seclusion and Restraint 18 PRESENTATION The WRAP is divided into six sections: Roadmap to Seclusion and Restraint Free Mental Health Services Distribute the handout Examples of Consumer WRAPs, which includes three actual WRAPs from consumers in Minnesota. Take a minute to look these over. Module 5 Strategies to Prevent Seclusion and Restraint 19 PRESENTATION “I remember coming home from the hospital, feeling great and as soon as I got there I was bombarded with loneliness, other peoples’ problems and all the stuff that probably helped put me in the hospital to begin with……” L. Belcher, Consumer Roadmap to Seclusion and Restraint Free Mental Health Services Developing a Wellness Recovery Action Plan (WRAP) OBJECTIVE: Participants will understand how to develop a WRAP for themselves and will be able to transfer these skills to their work with consumers. PROCESS: Refer participants to the handout Examples of Consumer WRAPs and give them time to review the WRAPS in class. Give each participant a copy of the handout Developing a WRAP, which gives instructions on how to complete a WRAP. Ask each participant to develop one section of a WRAP. Remember, a recovery plan does not have to be for psychiatric symptoms. It can be for any physical condition or for recovery from a difficult or traumatic life experience. Divide the group into four or five smaller groups and have each person share one part of his or her WRAP. Reconvene as a large group and facilitate a discussion. DISCUSSION QUESTIONS: MATERIALS REQUIRED: • What are the similarities between consumer and staff WRAPs? • What are the differences between consumer and staff WRAPs? • How could you use this tool in your work environment? Paper and a writing utensil for each participant Examples of Consumer WRAPs handout Developing a WRAP handout APPROXIMATE TIME REQUIRED: 30 minutes SOURCE: WRAP materials from Mary Ellen Copeland Module 5 Strategies to Prevent Seclusion and Restraint 20 PRESENTATION Exercise/Discussion—Module 5 Roadmap to Seclusion and Restraint Free Mental Health Services “Ex-patients have similar feelings and experiences and they can understand and support each other in a way that’s different from family or professional services. We can do mutual support and understand the way we were treated. There’s nothing else out there on the weekends and evenings.” Peg Sullivan • Drop-in activities vary depending on the particular wishes and needs of the consumers involved. Module 5 Strategies to Prevent Seclusion and Restraint 21 PRESENTATION Drop-In Centers • Drop-in centers are a central place for consumer self-help, advocacy, and education about mental health issues and resources. • Through a drop-in center, consumers develop their own programs to supplement existing mental health service or provide an alternative to those services. • Consumers come together to make friends and socialize—which helps combat the isolation and loneliness often associated with mental illnesses. • A drop-in center could be a snack bar or canteen within a hospital setting. It can be a place to gather and socialize. • Drop-in center activities focus on the wellness, capabilities, and talents of their participants. Roadmap to Seclusion and Restraint Free Mental Health Services • Rap sessions (self-help group meetings) • Socials or parties • Guest speakers • Individual and systems advocacy • Serve as a referral bank for mental health services • Assist with employment or housing searches How can mental health workers support consumer run, consumer-driven drop-in centers? Module 5 • Advocate for space, financial support, zoning • Make referrals • Provide materials and resources, if asked • Offer to be a guest speaker • Referral bank for mental health services • Assistance with housing or employment searches Strategies to Prevent Seclusion and Restraint 22 PRESENTATION Drop-In Centers Activities Roadmap to Seclusion and Restraint Free Mental Health Services Comfort Rooms Distribute the handout How to Set Up a Comfort Room by Gayle Bluebird. • Our environment significantly impacts our mood and behavior. • Health care uses the concept of a “comfort room” in other aspects of the hospital environment. Examples include surgery waiting rooms, oncology family units, and birthing centers. • Typically, inpatient psychiatric facilities do not portray a warm and welcoming environment. • Gayle Bluebird, R.N., has does innovative work in using the comfort room concept as a preventive tool to reduce the need for seclusion and restraint in Florida. • Gayle’s Web site is www.contac.org/bluebird. • As people diagnosed with a mental illness are empowered in their recovery process, we must listen to what they have to say about their surroundings and environment. • Consumers clearly indicated in the National Association of Consumer/Survivor Mental Health Administrators survey (2000) that having a comfortable environment would help prevent the need for seclusion and restraint. Here are some direct quotes from the survey. Module 5 Strategies to Prevent Seclusion and Restraint 23 PRESENTATION Recovery Through the Arts • The arts can serve as a vehicle for creative self-expression, social change, and personal empowerment. • The arts enable people who have been labeled with a stigmatizing diagnosis to convey their personal experiences of madness and recovery to others. • Arts can be used as a means of self-healing and spiritual growth—for connecting mind, body, and spirit. • The ability to experiment and explore one’s inner self through a variety of mediums helps to build self-confidence and self-worth. • Art therapy has been a part of the hospital environment, but many art therapists have been interpreters of art instead of helpful art instructors. • A self-help approach to art encourages consumers to do their work without being scrutinized for pathology. Artists must feel that anything they create is acceptable. • There are many modalities that can be used in recovery through the arts including journal writing, poetry, music, alternative healing methods, painting, and sculpting. • Please add local resources related to recovery through the arts and/or show examples of consumer artwork. Roadmap to Seclusion and Restraint Free Mental Health Services • A homey setting – soft chairs, drapes, pictures • A big overstuffed, vibrating, heated chair with a blanket, headphones, and gentle soft music Comfort Room Definition: The Comfort Room is a room that provides sanctuary from stress and/or can be a place for persons to experience feelings within acceptable boundaries. (Gayle Bluebird) Module 5 Strategies to Prevent Seclusion and Restraint 24 PRESENTATION What would have been helpful in preventing the use of seclusion or restraints for you? Roadmap to Seclusion and Restraint Free Mental Health Services Comfort Room Door Sign A special place where you may spend some time alone. You may ask any staff member to use this room. There are items that you can sign-out to help you calm down and relax (stuffed animals, soft blanket, music, magazines, and more). Persons who wish to use the room will be asked to first sign their names in the sign-in book and talk to a staff member before entering. Module 5 Strategies to Prevent Seclusion and Restraint 25 PRESENTATION • The comfort room is not an alternative to seclusion and restraint; it is a preventive tool that may help reduce the need for seclusion and restraint. • It is critical that people diagnosed with mental illnesses be made an integral part of decision making for the development and policymaking of the comfort room. • Consumers should ask to make comments and rate their degree of personal satisfaction with the comfort room and make suggestions for improvement. • The comfort room is to be used voluntarily, although staff members might suggest its use and may be present if the person desires it. • The comfort room is set up to be physically comfortable and pleasing to the eye. It may include a recliner chair, walls with soft colors, murals (images to be the choice of persons served on each unit), and colorful curtains. • Comfort items can be made available to persons wishing to use the room. ○ Stuffed animals ○ Soft blanket ○ Headphones ○ Quiet meditative audio tapes ○ Bright colored pillow cases ○ Journaling materials ○ Reading materials • Persons who wish to use the room will be asked to first sign their names in the sign-in book and talk to a staff member before entering. • A sign on the door may look like this: Roadmap to Seclusion and Restraint Free Mental Health Services Module 5 Strategies to Prevent Seclusion and Restraint 26 PRESENTATION Service Animals • Service animals can provide companionship and physical assistance, and often help humans develop therapeutic bonds that provide psychological, emotional, and social benefits. • Scientific research has begun to validate the role of service animals/service dogs for people with disabilities. • A 1996 study by Allen and colleagues found that people with disabilities that had service dogs scored higher for psychological well-being, self-esteem, community integration, and the amount of control they could exert over their environment. • The same study also found that the number of human care hours decreased by an average of 78 percent—which represent a significant savings in health care costs (Allen et al., 1996). • Other documented research benefits include improved self-esteem, independence, social acceptance, lowered blood pressure, moderation of stress, improved motivation, decreased serum cholesterol, and mitigation of the effects of loneliness (DHHS, 2001). • The Americans with Disabilities Act (ADA Title III, 28 Code of Federal Regulations Sect. 36.104) states that a service animal is any animal that is individually trained to help a person with a disability. • By law, service animals are not pets, and they may be of any breed or size. • Service animals can do mobility, hearing, guide, seizure alert, emotional support, and other work needed by the person because of their disability. • Federal (ADA 28 CFR Sect.38.302) and State laws protect the rights of individuals with disabilities to be accompanied by their trained service animals in taxis, buses, stores, restaurants, doctors’ offices, school, parks, housing, and other public places. • Encourage participants to look up service animals on the Web. One place to start is www.deltasociety.org. Roadmap to Seclusion and Restraint Free Mental Health Services “What is a Psychiatric Advance Directive (PAD)?” A PAD is a legal document that becomes part of the medical chart that provides the following information: Treatment preferences, including seclusion, restraint, and medications Naming an “agent” or proxy who will make decisions about mental health care when the person with a mental illness is not capable of informed decision-making Psychiatric Advance Directive Module 5 • Instructional – refers to a person’s treatment wishes (i.e., what you want in the way of treatment or services and also what you don’t want.) Also known as a “living will.” • Agent Driven – gives another individual the power to make decisions for you when you are deemed incapable of making decisions for yourself (i.e., who you would want to make decisions for you. Also called durable power of attorney, surrogate decision maker, or a proxy.) Strategies to Prevent Seclusion and Restraint 27 PRESENTATION Psychiatric Advance Directives (PADs) • Psychiatric Advance Directives are similar to other types of health advance directives. Roadmap to Seclusion and Restraint Free Mental Health Services Why Should I Fill Out a Psychiatric Advance Directive? (Or, sometimes the best defense is a good offense) It is very important to work with the provider(s) and your proxy in developing the PAD and to make sure significant people have copies of the PAD. Module 5 Maintain choice and control in treatment Increase continuity of care Decrease possibility of involuntary treatment If hospitalized, PAD may affect kind/type treatment received Provides opportunity to discuss crisis plan with family and friends Establishes clear boundaries for release of information Provides an effective alternative to court appointed guardian Establishes plans for caring for family, finances, and pets Restores self-confidence Strategies to Prevent Seclusion and Restraint 28 PRESENTATION The handout Why Should I Fill Out a Psychiatric Advance Directive? is a more detailed version of the PowerPoint Slide. Roadmap to Seclusion and Restraint Free Mental Health Services Creating My Own Psychiatric Advance Directive OBJECTIVE: Each participant will fill out a Psychiatric Advance Directive practice worksheet. PROCESS: Refer participants to the handouts Ten Tips for Completing an Effective Advance Directive and Psychiatric Advance Directive Practice Worksheet. Divide the participants into small groups of 4 to 5 each. Ask each participant to review the list of Ten Tips. Ask each participant to think of their own “mental health,” whether it is stress or a diagnosed mental illness, and ask them to fill out the worksheet as completely as possible. DISCUSSION QUESTIONS: MATERIALS REQUIRED: APPROXIMATE TIME REQUIRED: Module 5 • Why do you think a psychiatric advance directive is important? How would you compare it to a living will, if at all? What are the differences? • When is the most appropriate time to write such a directive? • What type of assistance, if any, should be offered? Cite some reasons why this might be important. • What do you believe are the goals or outcome of having such a directive? Handouts of Ten Tips for Completing an Advance Directive and the Psychiatric Advance Directive Practice Worksheet. 30 minutes Strategies to Prevent Seclusion and Restraint 29 PRESENTATION Exercise/Discussion—Module 5 Roadmap to Seclusion and Restraint Free Mental Health Services • National Mental Health Association www.nmha.org or 800-969-6642 • The Bazelon Center for Mental Health Law www.bazelon.org/advdir.html or 202-467-5730 • National Association of Protection and Advocacy Systems www.napas.org or 202-408-9514 • • Peer Education Project 518-463-9242 Centers for Medicare & Medicaid Services (CMS) www.cms.hhs.gov Prime Directives • The idea behind the Prime Directive is similar to the Advance Directive. • In January 2000, the Prime Directive Initiative in New York State began with the vision of former consumers of children’s mental health services who are now advocates. • A group of young people, family members, professionals, and policymakers developed a draft of My Prime Directive Journal (Tenney, 2001). • This document was then presented at focus groups around New York State. These focus groups were composed of young people, family members, and professionals. • A final draft was then edited and made available for distribution. • Pass around a copy of My Prime Directive Journal (Tenney, 2001). Module 5 Strategies to Prevent Seclusion and Restraint 30 PRESENTATION Advance Directive Resources Roadmap to Seclusion and Restraint Free Mental Health Services Prime Directives are self-help tools and DO NOT replace a treatment plan. Module 5 Strategies to Prevent Seclusion and Restraint 31 PRESENTATION Use of My Prime Directive Journal and My Prime Directive is completely voluntary and is NEVER to be mandatory Roadmap to Seclusion and Restraint Free Mental Health Services Distribute the handout Six Essential Steps for Prime Directives. SIX ESSENTIAL STEPS FOR PRIME DIRECTIVES Module 5 1. Getting the “buy-in” of the facility or program that will pilot the project. 2. Meeting with the core group of staff and reviewing the materials and goals. 3. Meeting with the staff of the facility/program and review the materials and goals. Strategies to Prevent Seclusion and Restraint 32 PRESENTATION • Six essential steps are seen as necessary to bring both the Prime Directive and Prime Directive Journal to young people. Roadmap to Seclusion and Restraint Free Mental Health Services 4. Meeting with the young people, filling in a survey, reviewing the materials and goals, answering questions and developing a working relationship with the young people. 5. Ongoing technical assistance through the pilot process. 6. In three months, re-administer the surveys and see if there was a notable difference. What Young People Are Saying About Involving Youth In Their Services and Systems Module 5 • “We are young, but need to be treated as human beings and not as a problem or disorder.” • “We are prototypes, not to be treated as stereotypes.” • You can do all the research you want, but if you forget who we are and what we need as people, and if you don’t respond to our needs in the system and in individual treatment, you will fail, the system will fail, and we will bear the burden as we do now. You must involve youth, bring us to the table, and when we show up, you must listen. LISTEN.” Strategies to Prevent Seclusion and Restraint 33 PRESENTATION SIX ESSENTIAL STEPS FOR PRIME DIRECTIVES Roadmap to Seclusion and Restraint Free Mental Health Services • “Another step is being taken when individual young people are able to speak with a powerful voice in planning their own services….” • “Involving youth during treatment and service planning….Proactively solicit treatment ideas and therapeutic activities from the individual youth…Offer more treatment options. True informed consent is really about more treatment options.” (Juliet K. Chol, consultant on children’s mental health programs, Fall 2000) • Both the Prime Directive and the Journal have anticipated benefits for the three groups most affected: young people, their family members, and programs (professionals). Distribute the handout Anticipated Benefits of Prime Directives. Module 5 Strategies to Prevent Seclusion and Restraint 34 PRESENTATION What Professionals Are Saying About Involving Youth In Their Services and Systems Roadmap to Seclusion and Restraint Free Mental Health Services • A concrete voice in treatment and service planning, including wishes and concerns. • Opportunities to ask questions that are difficult to ask. • A concrete plan for goals for future life. • Increased self-esteem, hope and trust as they begin on the road to recovery. ANTICIPATED BENEFITS/ OUTCOMES FOR PARENTS • A forum to hear from their children what has been difficult to hear in the past. • An intermediary when communication is difficult. • Insight to their children’s wants and needs. • An active role in understanding their children’s goals for recovery. Module 5 Strategies to Prevent Seclusion and Restraint 35 PRESENTATION ANTICIPATED BENEFITS/OUTCOMES FOR YOUNG PEOPLE Roadmap to Seclusion and Restraint Free Mental Health Services • Better informed recipients of services. • More aware/responsible program staff. • Provides a quality assurance mechanism. • Uses a recovery oriented model. • Reduction of seclusion, restraint, and coercion. • Better understanding of recipients wants and needs. • The underlying goal of using consumer-driven supports such as prime directives and psychiatric advance directives is to create partnerships between consumers and staff. Module 5 Strategies to Prevent Seclusion and Restraint 36 PRESENTATION ANTICIPATED BENEFITS/ OUTCOMES FOR PROGRAMS Roadmap to Seclusion and Restraint Free Mental Health Services Cheryl Villiness Devereux Georgia Treatment Network Focal Point, Fall 2000 Communication Strategies • Many direct care staff have already been trained extensively in communication strategies. • The purpose of this session is not necessarily to teach new skills, but provide opportunities to hear things in new ways. • Direct care staffs have lots of valuable and important information about the practice of seclusion and restraint—it affects you, too! So it’s important for us to hear what you have to say. • Communication is very complicated, even though it may appear to be simple. This next exercise demonstrates this. • Excellent communication is essential in times of crisis. It’s important to know who is in charge, who makes decisions, and how this process will take place before a situation escalates. Module 5 Strategies to Prevent Seclusion and Restraint 37 PRESENTATION “An important shift occurs when we begin to work with our clients as partners in their treatment, instead of working on them.” Roadmap to Seclusion and Restraint Free Mental Health Services How Hard Can Communication Be? OBJECTIVE: To demonstrate the complexity of communication. PROCESS: Have participants get in pairs and sit back to back so they can’t see each other. Have them choose who will be the talker and who will be the listener. Before the session, develop several designs on 8.5 X 11 paper using markers. Use general shapes such as squares, circles, triangles, stars, straight lines, squiggly lines, etc. Give the talker a copy of one of the designs. Give the listener a blank sheet of paper and a pencil. The one with the design begins to give directions on what to draw. The goal is to have the design and the drawing turn out as similar as possible. The participant who is drawing cannot ask questions or talk at all. Give 3 minutes to complete the task. As participants finish, have them compare their drawings with the original designs. Tape each pair’s results together as a visual reminder during the rest of this module. Facilitate a discussion around communication skills. DISCUSSION QUESTIONS: • • • • What was it like to be the person giving directions? What was it like to be the person drawing? How does this exercise relate to the work environment? How does this exercise relate to working with people diagnosed with a mental illness? MATERIALS REQUIRED: Blank paper, writing utensils, designs to hand out, and tape APPROXIMATE TIME REQUIRED: 15 minutes Module 5 Strategies to Prevent Seclusion and Restraint 38 PRESENTATION Exercise/Discussion—Module 5 Roadmap to Seclusion and Restraint Free Mental Health Services • There has been a great deal of debate in the field of mental health around terminology. • For example, the word “patient” it is often associated with a lack of power, someone who is “ill,” needs professional help to get better, and depends on the system to take care of him or her, etc. • Using the word “client” still puts the person in a one down position, but is a better choice than the word “patient.” • The word “consumer” may still be associated with a power differential, but it adds a piece of power because it reminds us of the business strategy to listen to the “consumer” or “customer.” • What is our cultural attitude about “customers”? • Among consumers, some prefer to be referred to as “people diagnosed with mental illnesses.” This may mean they do not accept the diagnosis, but a medical professional has given it to them. • Mental health has its own language and words that are used on a routine basis. Module 5 Strategies to Prevent Seclusion and Restraint 39 PRESENTATION Communication Strategies: Issues of Power and Control • The words we all use to communicate are powerful and do indeed make a difference • A consumer from Minnesota named David created the following cartoon. • The cartoon is a good example of how sometimes everyday words and symbols may be confusing and have multiple meanings. Roadmap to Seclusion and Restraint Free Mental Health Services OUT WITH THE OLD IN WITH THE NEW Resistant families Families with unmet needs Dysfunctional families Overwhelmed and underserved Case management Service coordinator We offer this What do you need? Make it up as we go Staff a case Families and professionals creating intervention plans together The chronics People with mental illnesses (person-first language) Disturbed child Child with emotional disturbance The mentally ill People with mental illnesses and consumers Old & New Language OUT WITH THE OLD IN WITH THE NEW Professionals as providers Families as preferred providers Module 5 Schizophrenics People with schizophrenia We need placement for this child; where to next? Let’s develop a community plan with this child and family That’s your job Match each other’s offers SED, SMI Say the words: Seriously Emotionally Disturbed, Severe Mental Illness Do an assessment on Do an assessment with Do treatment on Do treatment with Talk about Talk with Develop services for Develop services with Strategies to Prevent Seclusion and Restraint 40 PRESENTATION Old & New Language Roadmap to Seclusion and Restraint Free Mental Health Services You and I by Elaine Popovich, adapted by Laurie Curtis From the Consumer Network News, Autumn 1995 I I I I I I I I I I I I I I I I I am a resident. You reside. live in a program. You live in a home. am placed. You move in. am learning daily living skills. You hate housework. get monitored for tooth brushing. You never floss. have to be engaged in “meaningful activity” every day. You take mental health days. am learning leisure skills. Your shirt says I am a “couch potato.” am aggressive. You are assertive. am aggressive. You are angry. am depressed. You are sad. am depressed. You grieve. am depressed. You try to cope with stress. am manic. You are excited. am manic. You are thrilled. am manic. You charge the limit on your credit card. am non-compliant. You don’t like being told what to do. am treatment-resistant because I stop taking medication when I feel better. You never complete a ten-day course of antibiotics. I am in denial. You don’t agree with how others define your experience. I am manipulative. You act strategically to get your needs met. My case manager, therapist, R.N., doctor, rehabilitation counselor, residential counselor, and vocational counselor all set goals for me for next year. You haven’t decided what you want out of life. Someday I will be discharged…maybe. You will move onward and upward, perhaps even out of the mental health system. I have problems called chronic; people around me have given up hope. You are in a recovery process and get support to take it one day at a time. Module 5 Strategies to Prevent Seclusion and Restraint 41 PRESENTATION • The following poem by Elaine Popovich clearly demonstrates the use of language Roadmap to Seclusion and Restraint Free Mental Health Services “I’m not sure it’s the exact words that are most important, but rather, the tone of voice, body language and the physical environment of the verbalization. The words need to be firm but kind, spoken by someone with whom the ‘patient’ has had prior positive experiences. The words should include references to experiences and people that the staff has determined ahead of time will help the ‘patient’ become grounded.” What makes up the meaning of an interaction? • Words: 7% • Facial expression: 55% • Tone of voice: 38% • So, not only the words we all use, but how we say them is critical and conveys our underlying feelings, assumptions, and beliefs. Module 5 Strategies to Prevent Seclusion and Restraint 42 PRESENTATION Communication Strategies: Listening Roadmap to Seclusion and Restraint Free Mental Health Services PRESENTATION • At a recent training, people diagnosed with mental illnesses developed the following list. This list was taken from Mary Ellen Copeland’s Mental Health Recovery Newsletter (2002, February). What Consumers Want to Hear From Staff • • • • • • • Module 5 You’re doing well How can I help you? I’m here for you We can work together through this It’s OK to feel like that I accept you and love you the way you are What do you need at this time? Strategies to Prevent Seclusion and Restraint 43 Roadmap to Seclusion and Restraint Free Mental Health Services • • • • • • • Module 5 You’ve come a long way You’re’ a strong person I admire your courage in dealing with this pain I encourage you Don’t give up I can’t promise, but I’d do my best to help I don’t understand. Please tell me what you mean Strategies to Prevent Seclusion and Restraint 44 PRESENTATION What Consumers Want to Hear From Staff Roadmap to Seclusion and Restraint Free Mental Health Services ROADBLOCKS TO ACTIVE LISTENING • • • • • • • • • Attraction Physical condition Concerns Overeagerness Similarity of problems Prejudice Differences Defensiveness Anger • Attraction. You find a person either attractive or unattractive. You pay more attention to what you are feeling than to what the person is saying. • Physical condition. You may be tired or sick. Without realizing it, you tune out some of the things the person is saying. • Concerns. You may be preoccupied with your own concerns. For instance, you keep thinking about the argument you’ve just had with your partner. • Overeagerness. You may be so eager to respond that you listen to only a part of what the person has to say. You become preoccupied with your responses rather than with the person’s revelations. • Similarity of problems. The problems the person is dealing with are similar to your own. While the person talks, your mind wanders to the ways in which what is being said applies to you and your situation. • Prejudice. You may harbor some kind of prejudice toward the person. You pigeonhole him or her because of race, sexual orientation, nationality, social status, religious persuasion, political preferences, lifestyle, or some other characteristic. Module 5 Strategies to Prevent Seclusion and Restraint 45 PRESENTATION Communication Strategies: Roadblocks to Active Listening • It is easy to become preoccupied with ourselves and our own needs in such ways that we are kept from listening clearly to those needing assistance. • Everyone experiences roadblocks—the key is to recognize when it’s happening for you. Roadmap to Seclusion and Restraint Free Mental Health Services Alternative Dispute Resolution/Mediation • Traditionally, conflict has been viewed as being destructive and divisive. However, conflict can be managed effectively when recognized as an opportunity for growth. • Conflict is the natural and unavoidable response to change. Every time we are asked to do something differently, think of something differently, or encounter a new situation, we experience change and conflict. • Conflict encourages us to accept new roles and responsibilities. By embracing conflict, individuals can learn to manage their way through turmoil while maintaining individual respect, integrity, and team participation. • With the help of a neutral party, those experiencing conflict with one another can enter into creative solutions to their clearly defined problems. • This training is not intended to teach how to do Alternative Dispute Resolution or Mediation, but will just give a spoonful of information about these topics. • If staff is interested in further training in this area, please seek out experts for this type of training. Alternative Dispute Resolution Definition: The term Alternative Dispute Resolution applies to the creative solving process that does not engage in litigation through the courts. Module 5 Strategies to Prevent Seclusion and Restraint 46 PRESENTATION • Differences. The person and his or her experience are very different from you and your experience. The lack of commonalities is distracting. • Defensiveness. A person takes another’s difference of opinion as an attack upon him/herself. • Anger. Anger in a person or within a group may distort communications. Roadmap to Seclusion and Restraint Free Mental Health Services Mediation Definition: Mediation is not the practice of law; it is the art and science of bringing disputing parties to mutual agreement in resolving issues. Mediation does not find fault or blame. Another definition of Mediation: Mediation is a dispute resolution process in which a neutral third party assists the participants to reach a voluntary and informed settlement. Module 5 Strategies to Prevent Seclusion and Restraint 47 PRESENTATION • There are several forms of alternative dispute resolution. The most common form is mediation. Roadmap to Seclusion and Restraint Free Mental Health Services • The issues, • The needs of the disputants with respect to the issues, • A range of possible solutions, and • A solution agreeable to all parties involved. • A key component to any mediation process is letting each person tell his or her own story and then feel as if someone understands his/her perspective. Just knowing someone understands reduces the tension level in the conflict. The following are the usual steps in the mediation process: • Those in dispute agree to mediation. • Those in dispute agree upon a mediator. • Those in dispute agree upon the ground rules. • Each person tells his/her own story. Module 5 Strategies to Prevent Seclusion and Restraint 48 PRESENTATION In mediation the goal is to clearly identify: Roadmap to Seclusion and Restraint Free Mental Health Services • Solve the problem • Tell the truth • Listen without interrupting • Be respectful • Take responsibility for carrying out the agreement • Keep the situation confidential • Mediation provides a problem-solving approach to disputes, focusing on the needs and interests of the participants, with consideration to fairness, privacy, self-determination, and the best interest of all. Technical Assistance Centers • The Substance Abuse and Mental Health Services Administration, Center for Mental Health Services supports technical assistance centers, including consumer and consumer supporter technical assistance centers. • Services may include technical assistance, information and referrals, on-site consultation, research, training, library services, publications, annotated bibliographies, and other resources. • Many services are available free of charge, but in some cases, charges may apply. • Many times consumers may not be aware of these resources. You can help by making sure consumers know about these resources. • If you are not familiar with these resources, we strongly encourage you to check out several of the Web sites in the handouts. Distribute the handouts Research, Training, and Technical Assistance Centers and Children’s and Adolescents’ Mental Health Services Technical Assistance and Research Centers. Module 5 Strategies to Prevent Seclusion and Restraint 49 PRESENTATION In order for mediation to be successful participants should be willing to: Roadmap to Seclusion and Restraint Free Mental Health Services Examples of Consumer WRAPs Wellness Toolbox Listen to soothing music, talk to my parrot, read, talk to a support person, go for a walk, play on the computer, e-mail, watch TV Daily Maintenance Plan Things I must do: feed my parrot, eat regular meals, take medications, bathe regularly. Triggers TV news, anniversaries of hospitalizations and episodes, being overtired and stressed, family friction, being judged, self-blame, being around abuse or someone who reminds me of past abuse Early Warning Signs Anxiety, feeling slowed down, overeating, compulsive behavior, secretiveness, feelings of abandonment and rejection, beginning irrational thought patterns Things I must do during Early Warning Signs Do daily maintenance whether I like it or not, talk to a support person about what’s going on, check in with a friend once a day, spend extra time with my parrot, listen to soothing music and sing with it, spend time in nurturing places like Barnes and Noble and The Good Earth When Things Are Breaking Down Feeling very needy, feeling fragile, irrational responses, racing thoughts, risktaking behaviors, bizarre behaviors, dissociation, suicidal thoughts, paranoia Crisis Plan None Module 5 Strategies to Prevent Seclusion and Restraint 50 HANDOUT Consumer WRAP #1 Roadmap to Seclusion and Restraint Free Mental Health Services Examples of Consumer WRAPs Wellness Toolbox Crochet, bake/cook, treadmill, attend support group, take a nap, connect with therapist, play computer games, talk to therapist, talk to a friend, listen to music, journaling, wear makeup, work on genealogy, go fishing Daily Maintenance Plan What I’m like when I’m well Calm, capable, confident, content, organized, reliable, focused, reserved, competent, neat/clean, productive, flexible, intelligent, articulate, professional, analytical, determined, positive What keeps me feeling well: things I do every day Use treadmill 30 minutes a day, eat regular meals, get 7½ hours sleep a night, have time alone, take medications, regular schedule/routine Extra things to do to stay well (weekly/monthly): Bake, spend time with kids, crochet, shop, socialize, intellectual conversation, clean house, play computer games, watch a movie with spouse, play cards, visit family, take a bike ride, meet with job coach Triggers Being judged/criticized, anniversary of traumatic event, overstimulation, spending time with family (mother) on holidays, someone else’s anger, stress, financial problems, feeling left out, medication changes that are not effective Triggers Action Plan Check in with therapist or psychiatrist, positive self talk, take a nap, vigorous exercise, be assertive, verbally express my feelings, take a break/time out/go home, journaling, ask others for support, follow daily maintenance plan Early Warning Signs Helplessness/hopelessness, negative thinking/talk, apathetic, lack of motivation, avoiding daily maintenance routine, isolating/withdrawing, back pain/ pressure, short tempered/irritated, crying, increased appetite, irrational fear of abandonment Early Warning Signs Action Plan Check daily maintenance plan and follow it, contact therapist, ask for help from people around me, attend a support group, take a nap, exercise, express feelings When Things Are Breaking Down Suicidal thoughts/wanting to die, no appetite, racing thoughts, intense feelings, waking up between 3 and 6 AM, not feeling, respond as a victim, inability to follow through with commitments, not wanting to leave home, doing things in excess Breaking Down Action Plan Talk to a support person, make appointment with therapist, readdress/focus on wellness plan, avoid outside stimulation, take time for self, exercise, journaling, follow daily maintenance plan Page 1 of 2 Module 5 Strategies to Prevent Seclusion and Restraint 51 HANDOUT Consumer WRAP #2 Roadmap to Seclusion and Restraint Free Mental Health Services Consumer WRAP #2 (continued) Crisis Plan When feel out of control: Supporters: spouse, sister, therapist, coworker Don’t want: mother, father (no understanding of mental illness) Medications: prozac Don’t want: serzone, wellbutrin, generic prozac works, not currently taking: lithium, nortriptyline Don’t want: depakote, paxil Treatments: day treatment at mental health center Facilities: St. Cloud Hospital Help from others: spouse: hold me while I cry ALL: don’t talk about my problems Spouse: take care of financial responsibilities Things that make it worse: Pushing me to do things I’m not ready to do. Being angry or aggressive. Criticism. If I am in danger, take me to the community hospital. Page 2 of 2 Module 5 Strategies to Prevent Seclusion and Restraint 52 HANDOUT Not able to get out of bed after 10 AM, quitting job, missing appointments, isolating, staying in bed, crying and rocking, neglecting personal hygiene, not getting dressed, not taking shower, staring into space, not responding to anyone around me Roadmap to Seclusion and Restraint Free Mental Health Services Examples of Consumer WRAPs Wellness Toolbox Attend support group, take a nap, do crossword puzzles, play cards, play computer games, pool therapy, take a warm bath, listen to classical music, read, journaling, deep breathing/focusing, call a friend, put picture albums together, meditate, creative activity like quilting or crocheting. Daily Maintenance Plan What I’m like when I’m well Natural leader, happy/content, endearing, responsible, reliable, calm, persistent, optimistic, capable, spontaneous, confident, competent, supportive, kind What keeps me feeling well Taking medications, eat 3 healthy meals, quiet time before bed, 30 minutes of meditation, cup of herbal tea, shower/wash hair, get up by 8 AM, go to bed at same time—11 PM, avoid junk food, keep a routine, drink 8 glasses of water a day, take Vitamin C, brush my teeth Extra things to do to stay well Plan something fun for weekend, spend time with grandchildren, read, play games, cards with family and friends, plan a vacation Triggers Dad’s death—April, movies about abuse, overtired, being interrupted, relationship ending, too many needy people, excessive stress, overstimulation, car problems, loud noises, arguing—especially family holidays and especially Christmas Triggers Action Plan Do everything on daily maintenance list, screen phone calls, get feedback from supporters, listen to classical music, take time off for myself, on holidays take care of my emotions and express what I’m feeling Early Warning Signs Forgetfulness, anxiety, anger, irritable, physical problems, obsession with something, negative thinking, impulsive, irrational thought patterns, feeling inadequate/worthless Early Warning Signs Action Plan Do everything on daily maintenance list whether I want to or not, call supporter/therapist, readjust schedule/slow down, do one hour of something fun from the Toolbox, relaxation exercises, ask someone to do housework—especially the dishes Things I would choose to do Make an appointment with doctor, read a good book, listen to good music, ask friends who are positive to spend time with me Page 1 of 2 Module 5 Strategies to Prevent Seclusion and Restraint 53 HANDOUT Consumer WRAP #3 Roadmap to Seclusion and Restraint Free Mental Health Services Consumer WRAP #3 (continued) Unable to sleep for 2 days, increased physical pain—back and neck, avoid eating, wanting to be totally alone, racing thoughts, pacing, spacing out, not feeling, obsessed with negative thoughts that can’t be controlled, paranoid, defensiveness Breaking Down Action Plan Call psychiatrist, call physical doctor, do everything on daily maintenance list, take time off from work, journal, ask daughter to come over and stay with me, give medications, checkbook, car keys to adult children, do 3 deep breathing exercises, do 2 focusing exercises Other things I may choose Do a creative activity—crocheting & crafts, ask doctor to check my medications Crisis Plan Symptoms when supporters take responsibility: Not sleeping for one week, excessive pacing, can’t stay still, anger and weeping within 5 minutes time, poor decision making, severe pain, agitated depression, flat affect, not doing any home responsibilities for one month, extreme guilt, disconnected sentences, anger that people don’t understand Supporters: Son: pick up mail, pay bills Son: keep car running Daughter: visit me, cancel appointments, bring clothes and personal items Daughter-in-law: clean house before coming home, feed cat, change litter Daughter-in-law: visit me, bring grandchild Son-in-law: mow lawn, shovel snow, visit me Coworker: cancel any trainings or appointments, handle messages Medications: Currently use: depakote, zoloft, vioxx, lipitor Medications to use if necessary: ativan Avoid: antihistamines, sulfa Treatments: massage therapy, pool therapy, cognitive therapy Treatment to Avoid: ECT Facilities: St. Cloud Hospital Avoid: Regional Treatment Center (State hospital): increases symptoms Help from others: Listen to me, let me pace, encourage me, validate my feelings, let me rest, feed me good food, check on me, call me, stay overnight Don’t: Talk constantly Page 2 of 2 Module 5 Strategies to Prevent Seclusion and Restraint 54 HANDOUT When Things Are Breaking Down Roadmap to Seclusion and Restraint Free Mental Health Services Developing a WRAP Daily Maintenance Plan • Describe yourself when you are feeling well. Make a list of descriptive words. • Make a list of things you know you need to do for yourself every day to keep yourself feeling all right. • Make a list of things it would be good to do. Triggers • Make a list of those things that, if they happened, might cause an increase in your symptoms. They may have triggered or increased symptoms in the past. • Make a list of what you will do if triggers occur. • Make a list of additional things you could do that would be helpful. Early Warning Signs • Make a list of Early Warning Signs for you. • Make a list of things you must do when you experience Early Warning Signs. • Make a list of things you could choose to do if they feel right. Symptoms • Make a list of the symptoms which, for you, mean that things have worsened and are close to the crisis stage. Crisis • Make a list of what you are like when you are well. • Make a list of symptoms that would indicate to others that they need to take over responsibility for your care and make decisions in your behalf. • Make a list of people who you want to take over for you when the symptoms you list come up. They can be family members, friends, or health care professionals. Have at least five people on your list of supporters. You may want to name some people for certain tasks like taking care of the children or paying the bills. For each person, list his or her name, connection/role, and phone number. Also make a list of people that you do not want involved in your care and why you do not want them involved. • Medication. Make a list of the medications you are currently using and why you are taking them. List those medications you would prefer to take if medications or additional medications became necessary and why you would choose those. List those medications Page 1 of 2 Module 5 Strategies to Prevent Seclusion and Restraint 55 HANDOUT In your Seclusion and Restraint Journal, please complete the following information for a WRAP. Remember, a WRAP does not have to be related to psychiatric symptoms—it could be for any physical condition or recovery from a difficult or traumatic life experience. Roadmap to Seclusion and Restraint Free Mental Health Services Developing a WRAP (continued) Post-Crisis Planning • Describe how you would like to feel when you have recovered from this crisis. • List post recovery support people. • List things you must do after returning home, things others can do for you, things that can wait until you feel better. • List things you must do for yourself every day. • List people and things to avoid. • List signs that may be the beginning to feeling worse and list Wellness Tools to use to help you. • Issues to consider: ○ People to thank ○ People to apologize to ○ People with whom you need to make amends ○ Medical, legal, financial issues that need to be resolved ○ Things you need to do to prevent further loss (i.e., canceling credit cards, getting official leave from work, etc.) • Develop a reasonable timeline for resuming responsibilities. • Consider whether any changes are needed in your WRAP. Page 2 of 2 Module 5 Strategies to Prevent Seclusion and Restraint 56 HANDOUT that would be acceptable to you if medications became necessary and why you would choose those. List those medications that should be avoided and give the reasons. • Treatments. List the particular treatments that you would like in a crisis situation and some that you would want to avoid. • Home/Community Care/Respite Center. Many people are setting up plans so that they can stay at home and still get the care they need if they are in a crisis by having around-theclock care from supporters and regular visits with health care professionals. List what you have planned for this. • Treatment Facilities. Using your personal experience and information you have learned through your own research or though talking with others, list those treatment facilities where you would prefer to be hospitalized if that became necessary, and list those you with to avoid. • Help from others. List those things that others can do for you that would help reduce your symptoms or make you more comfortable. • Describe the symptoms, lack of symptoms, or actions that indicate supporters no longer need to use this plan. Roadmap to Seclusion and Restraint Free Mental Health Services How to Set Up a Comfort Room 1. Establish a plan for comfort room and submit it to the hospital administration. Approval from top-level administration is necessary including attendance at planning meetings and memoranda to support the effort. 2. Organize a planning committee which includes all levels of staffing. Two coordinators are helpful, one whom will work directly with staff and clients. 3. Involve people diagnosed with a mental illness in every aspect of planning. Allow them to actively participate in decorating the room with their input regarding preferences in design. 4. Conduct research regarding all furnishings and equipment that will be used in the comfort room for safety as well as comfort. 5. Create a comfort box with items that can be used in the comfort room including stuffed animals, headphones, reading materials, and other requested items. 6. Conduct training with staff and people diagnosed with a mental illness regarding the guidelines for usage. 7. Develop the room in graduated steps, introducing each new item and testing for efficiency, safety, and satisfaction. 8. Have sign-up book for each person to sign before and after using the comfort room. 9. Make sure a de-escalation preference form is filled out and placed on the record for helping to insure individual preferences about what is helpful and what is not in times of stress. 10. Keep an accurate record of progress. 11. Inform total staff with regular progress reports. 12. Congratulate direct care staff for participating in the implementation of the comfort room. Allow staff to participate in presentations or tours. Encourage their feedback or suggestions for improvement. 13. Collect data regarding use of and feedback for research purposes. Module 5 Strategies to Prevent Seclusion and Restraint 57 HANDOUT by Gayle Bluebird Roadmap to Seclusion and Restraint Free Mental Health Services Why Should I Fill Out A Psychiatric Advance Directive? An advance directive spells out what you want done in a time of crisis as a result of your mental illness. It also enables you to choose who you want to make medical decisions for you. It can also let others know your plans for the care of your children, pets, or home. This directive does not “activate” unless your capacity to make rational decisions becomes impaired. You can also use this document to describe those behaviors which are “indicators” of impaired capacity and which you think ought to activate the advance directive. An advance directive helps you maintain control in a time of mental health crisis and may prevent the crisis from worsening. Here are a number of important reasons why consumers should consider completing advance directives for mental health care: 1. An advance directive helps you maintain choice and control in the treatment you receive, according to your knowledge of what works best for you in managing your mental health care. This includes medication and treatment you do and do not want. 2. An advance directive increases the possibility that there will be continuity of care in times of crisis, including place, type, and personnel involved in treatment. 3. An advance directive may decrease the possibility of involuntary treatment. 4. If involuntary treatment does occur, a mental health care directive may have a direct impact on the treatment you do receive, including time in the hospital, the use of medications, place of treatment, and treatment plan upon release. 5. Preparing a mental health care directive affords an excellent opportunity to develop an effective crisis intervention plan and to discuss it with family, friends, and others before the crisis arises. This includes the opportunity to discuss approaches that are effective and those that hinder rather than help in times of crisis. 6. An advance directive allows you to authorize the release of information at a time when your capacity to make authorization is clear, and it enables you to state whom you do and do not want notified at the time of hospitalization. 7. An advance directive, particularly the appointment of a proxy whom you trust, can be an effective alternative to the court-appointed guardian. 8. An advance directive can include how you want your family, pets, and finances cared for while you are receiving treatment. 9. The implementation of an advance directive can help restore self-confidence and allay fears and panic in a time of crisis. This helps in terms of stabilization and recovery. Module 5 Strategies to Prevent Seclusion and Restraint 58 HANDOUT (or, sometimes the best defense is a good offense) Roadmap to Seclusion and Restraint Free Mental Health Services Ten Tips for Completing an Effective Advance Directive 2. Write your advance directive at a time when your illness is not severe enough to impair your judgment or to raise questions about the validity of the document. You probably do not want to fill out an advance directive while you are in the hospital or under commitment; unless the professionals treating you agree that your capacity is presently not impaired. If this is the case, consider asking them to witness your document. 3. Sit down and discuss the directive with people you trust and who can give you good feedback about your concerns and problems in times of crisis. Ask them what they would include in the directive if they were you. You do not have to include their suggestions, but shared wisdom may produce a stronger document with others invested in making it work. 4. Discuss your treatment concerns and the instructions you are thinking of putting in the directive with those who will be involved in your treatment and care. This should include your doctor, case manager, therapist, personal care assistant, and others directly involved in your care. Do this before you write your directive. 5. Discuss the contents of your advance directive with the person who will be your proxy before you finalize the directive. Can that person carry out the instructions as you wish and be a good advocate for you? If not, can you live with whatever limits that person may have? 6. Although it is important to get the opinions, thoughts, and ideas of those involved in your life and care, you, of your own free will, must decide what goes into the directive. If you are not comfortable with the directive, if it reflects pressure from others rather than your own choices, then it is more likely that you will reject the directive at a time when you are in crisis. Therefore, family, friends, and providers must be careful not to pressure you into choices that are not really yours. 7. Include your knowledge of what works for you based on your own experiences. While this is a legal document, you do not need to write it in legalese. Use your own words to describe your needs in time of crisis; what has worked and not worked for you; and what has caused negative reactions or actually hindered progress. You can use a story format, but do not make it too long. Page 1 of 2 Module 5 Strategies to Prevent Seclusion and Restraint 59 HANDOUT 1. Think of your directive as a relapse prevention plan or crisis intervention plan. Who do you need to be involved in your plan to make it work? Roadmap to Seclusion and Restraint Free Mental Health Services Ten Tips (continued) 9. Think about the following things that may need to be put into your directive: • What is the best way to describe my mental health problem? • What triggers my crisis, in particular, the point at which I would like to be hospitalized or given medications? Answering this question gives you an idea of when your directive should kick in. • What are your experiences, wishes, and concerns about medications and ECT? Would you prefer seclusion to the use of emergency medications? Are seclusion and restraints out of the question because they are contraindicated by your personal history? • What other concerns do you have about the way you might be treated? • What else has worked well for you in the past? Individual or group therapy? Time to be alone? Regular visits from particular family members or friends? Assurances that the rent is paid or your family is being cared for? • If you are a smoker, think about how your need to smoke may be addressed, particularly if there are hospital limitations on smoking. • If you want to be treated in the hospital by a particular doctor, make sure that doctor has hospital privileges. 10. Be reasonable in what you put in the directive. Do not include treatment or services that you know that you will not be able to get, particularly while in the hospital. Also, if your directive is not reasonable, you may be raising questions about the validity of your directive. Page 2 of 2 Module 5 Strategies to Prevent Seclusion and Restraint 60 HANDOUT 8. Read over the form until you understand it and do drafts of your directive before you actually write up your final document. Do not be afraid to ask for help figuring out the parts you do not understand. If you fill out the directive without really understanding it, you may end up writing a directive that is not valid. Roadmap to Seclusion and Restraint Free Mental Health Services Psychiatric Advance Directive Practice Worksheet Advance directives are based on the principles of personal choice and self-determination. The preferences you express regarding future treatment or services, a person you authorize to make decisions for you, the ability to revoke your advance directive, or any other issues are for you to decide, without anyone exerting any control or coercion over you. You also have the right to change your mind and change your advance directive at any time, but it is your responsibility to make sure that all copies of the advance directive are kept up to date and copies are shared with the appropriate people. This practice worksheet is not a legal document, but is designed to help you start thinking about what you want to include in your own advance directive. It can also help you start gathering the information you will need when you write one that is legally binding. More detailed information about psychiatric advance directives is available from the National Mental Health Association. Your “Expressed Wishes” An advance directive is your opportunity to express what treatments or services you choose to have, or not to have, during a psychiatric crisis. These statements are known as your expressed wishes. If you have ever been hospitalized before, think back about those things that were helpful to you, and those things that were not. What types of treatments or services are helpful to you during a crisis? This can include medications (and dosages), what facilities or healthcare professionals you want to be involved in your care, what helps you calm down if you’re feeling overly agitated, who can help you in other ways (such as taking care of children, pets, plants, or paying bills), people you want as visitors if you’re hospitalized, etc. Try to be as specific as possible. You may need to use additional sheets of paper: Page 1 of 3 Module 5 Strategies to Prevent Seclusion and Restraint 61 HANDOUT (Source: www.nmha.org) Roadmap to Seclusion and Restraint Free Mental Health Services Practice Worksheet (continued) Your Choice of Agent(s) An agent is someone who you authorize to make decisions for you at a time when you have been determined unable to make decisions for yourself. It’s important that you choose someone you trust and who you think will do a good job as your advocate. You may wish to choose one person as the primary agent, and choose a second person as a backup in case the first person is no longer able or willing to serve as your agent. 1st Agent’s Name: Address: City, State, and Zip: Daytime phone: Evening phone: Mobile phone: E-mail address: ______________________________ ______________________________ ______________________________ ______________________________ ______________________________ ______________________________ ______________________________ 2nd Agent’s Name: Address: City, State, and Zip: Daytime phone: Evening phone: Mobile phone: E-mail address: ______________________________ ______________________________ ______________________________ ______________________________ ______________________________ ______________________________ ______________________________ Page 2 of 3 Module 5 Strategies to Prevent Seclusion and Restraint 62 HANDOUT What types of treatments or services are NOT helpful to you during a crisis? This can include medications (and dosages) that you know will not be helpful, what facilities or health care professionals you wish to avoid, ways that people treat you that make you upset or angry, people who you don’t want to see if you are hospitalized, etc. Again try to be as specific as possible: Roadmap to Seclusion and Restraint Free Mental Health Services Practice Worksheet (continued) If it is determined you are unable to make your own decisions, and you choose to revoke your advance directive at that time, your agent will no longer be able to advocate for your expressed wishes, you will lose the benefits of having an advance directive, and it will be as though you never had one. You may wish to discuss this issue with your friends, relatives, and/or healthcare providers before you decide whether or not your advance directive should be revocable. Please circle the answer that’s right for you: Even if I were in the middle of a psychiatric crisis, I (would) (would not) want to be able to revoke my advance directive. Explanation of your choice of revocability, if you choose to give one: Summary Hopefully this worksheet helped you to get started thinking about what you want in your own psychiatric advance directive. Some States require that advance directives be done in a particular way for them to be considered legal documents. You should consult with an attorney or someone from your State’s Protection and Advocacy (P&A) program (www. napas.org or 202-408-9514) for legal information specific to your State. For more information on psychiatric advance directives issues and for a listing of additional resources, see the National Mental Health Association’s Psychiatric Advance Directives Toolkit, available by calling 800-969-6642 or visiting www.nmha.org Page 3 of 3 Module 5 Strategies to Prevent Seclusion and Restraint 63 HANDOUT Your Choice of Revocability Revocability is a controversial issue. Some individuals want to be able to revoke their advance directive even while they’re in crisis, possibly because they may change their minds about their expressed wishes or because they may become dissatisfied with the decisions their agent was making. Other people know that they don’t make good decisions when they are in crisis, want the decisions they made ahead of time to apply throughout a crisis, and therefore want their advance directive to be irrevocable. Laws around revocability vary from State to State. Therefore, you will need to consult your State law before drafting these provisions. Roadmap to Seclusion and Restraint Free Mental Health Services Six Essential Steps for Advance Directives 2. Meet with the core group of staff, review the materials and goals. 3. Meet with the staff of the facility/program, review the materials and goals. 4. Meet with the young people, fill in a survey, review the materials and goals, answer questions, and develop a working relationship with the young people. 5. Get ongoing technical assistance through the pilot process. 6. In three months, readminister the surveys that were given earlier to the young people and see if there is a notable difference. Module 5 Strategies to Prevent Seclusion and Restraint 64 HANDOUT 1. Get the “buy-in” of the facility or program that will pilot the project. Roadmap to Seclusion and Restraint Free Mental Health Services Anticipated Benefits of Prime Directives Anticipated benefits/outcomes for parents • A forum to hear from their children what has been difficult to hear in the past. • An intermediary when communication is difficult. • Insight into their children’s wants and needs. • An active role in understanding their children’s goals for recovery. Anticipated benefits/outcomes for programs • Better informed recipients of services. • More aware/responsible program staff. • Quality assurance mechanism. • Recovery-oriented model. • Reduction of seclusion, restraint, and coercion. • Better understanding of recipients’ wants and needs. Module 5 Strategies to Prevent Seclusion and Restraint 65 HANDOUT Anticipated benefits/outcomes for young people • A concrete voice in treatment and service planning, including wishes and concerns. • The opportunity to ask questions that are difficult to ask. • A concrete plan for goals for future life. • Increased self-esteem, hope, and trust as they begin on the road to recovery. Roadmap to Seclusion and Restraint Free Mental Health Services The Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, support the following Technical Assistance, Research, and Training Centers and Clearinghouses. Services may include technical assistance, information and referral, on-site consultation, training, library services, publications, annotated bibliographies, etc. Many services are available free of charge, but in some cases, charges are applicable. Center National Indian Child Welfare Association 5100 SW Macadam Ave. Suite 300 Portland, OR 97239 Phone: (503) 222-4044 Fax: (503) 222-4007 www.nicwa.org Services Provided • Technical assistance for community development • Public policy development • Information exchange • Technical assistance and training for Tribal grantees of the Child, Adolescent and Family Branch of the Center for Mental Health Services Technical Assistance Partnership for Child and Family Mental Health • Education, family involvement and advocacy 1000 Thomas Jefferson Street, NW Suite 400 Washington, DC 20007-3835 Phone: (202) 403-5600 Fax: (202) 403-5007 E-mail: tapartnership@air.org www.air.org/tapartnership • Peer mentors Center for Evaluation of Child Mental Health Systems • On-site consultation on management information systems Judge Baker Children’s Center 53 Parker Hill Avenue Boston, MA 02120 Phone: (617) 232-8390; (800) 779-8390 Fax: (617) 232-8399 • Meetings and conferences Research and Training Center on Family Support and Children’s Mental Health • Research and training focused on family support issues, family/professional collaboration, and diverse cultural groups Regional Research Institute of Portland State University P.O. Box 751 Portland, OR 97207-0741 Phone: (503) 725-4040 Fax: (503) 725-4180 E-mail: frieseb@rri.pdx.edu Module 5 • Child welfare • Youth coordinators • Topic-based conference training modules • Networking and organization collaborations • Annual research conference on family support issues • Information on publications and events through an electronic bulletin board Strategies to Prevent Seclusion and Restraint 66 HANDOUT Children’s and Adolescents’ Mental Health Services Technical Assistance and Research Centers Roadmap to Seclusion and Restraint Free Mental Health Services Research, Training, and Technical Assistance Centers Center Services Provided • Psychiatric rehabilitation research and training in 9 major areas: peer support and consumer service delivery, treatment models, vocational rehabilitation, managed care, women’s issues, HIV/AIDS, familial experience, diversity issues, and transition-age youth National Research and Training Center on Psychiatric Disability 104 South Michigan Avenue Suite 900 Chicago, IL 60603 Phone: (312) 422-8180 Fax: (312) 422-0740 www.psych.uic.edu/uicnrtc • Extensive dissemination and technical assistance at replacement cost or no cost • Workshops, seminars, academic courses, and training to providers • Technical assistance to Federal, State, and local agencies for public policy initiatives The Evaluation Center Human Services Research Institute • Consultation program through site visits or telephone/e-mail 2269 Massachusetts Avenue Cambridge, MA 02140 Phone: (617) 876-0426 Fax: (617) 497-1762 www.tecathsri.org • Topical evaluation network program • Tool kits to provide evaluators with tested methodologies and instruments • Evaluation materials program • Mini-grant program for system-of-change evaluation projects • Training program on evaluation-related skills • Multicultural issues in evaluation Page 1 of 5 Module 5 Strategies to Prevent Seclusion and Restraint 67 HANDOUT The Substance Abuse and Mental Health Services Administration, Center for Mental Health Services supports these Research, Training, and Technical Assistance Centers. Services may include technical assistance, information and referrals, on-site consultation, training, library services, publications, annotated bibliographies, and other resources. Many services are available free of charge, but in some cases, charges may apply. Roadmap to Seclusion and Restraint Free Mental Health Services Research, Training, and Technical Assistance Centers (continued) • Consultation and training using psychiatric rehabilitation technologies and topics related to rehabilitation and recovery Boston University 940 Commonwealth Avenue West Boston, MA 02215 Phone: (617) 353-3549 Fax: (617) 353-7700 E-mail: w.anthony@bu.edu www.bu.edu/sarpsych • Workshops, conferences, professional development programs, and academic degree programs • Service demonstration programs for consumer/survivor rehabilitation and recovery • Information dissemination via a newsletter, journal, Web site, and catalog • Research on psychiatric rehabilitation and related topics National Mental Health Consumers’ Self-Help Clearinghouse • Consumer information and referrals 1211 Chestnut Street Suite 1207 Philadelphia, PA 19107 Phone: (800) 553-4539 Fax: (215) 636-6312 E-mail: info@mhselfhelp.org www.mhselfhelp.org • Training events Center for Support of Mental Health Services in Isolated Rural Areas • Knowledge synthesis Frontier Mental Health Services Resource Network Western Interstate Commission for Higher Education Mental Health P.O. Box 9752 Boulder, CO 80301 Phone: (303) 541-0256 Fax: (303) 541-0291 E-mail: dmohatt@wiche.edu www.wiche.edu/MentalHealth/Frontier • Human resource development National Resource Center on Homelessness and Mental Illness • On-site technical assistance to demonstration grantees on topics related to service delivery, program organization, research design, and instrumentation • On-site consultation • Teleconferences and national conferences • Consumer library • Newsletter • Consumer and consumer-supported nationwide database • Technical assistance to organizations Policy Research Associates, Inc. 345 Delaware Avenue Delmar, NY 12054 Phone: (518) 439-7415 Fax: (518) 439-7612 Email: pra@prainc.com www.prainc.com • Conferences and workshops • Demonstrations and evaluations • Workshops, training institutes, and substantive papers on issues related to service delivery to homeless persons with serious mental illnesses • Database of 4000+ articles, annotated bibliographies on topic clusters, and specialized database searches Page 2 of 5 Module 5 Strategies to Prevent Seclusion and Restraint 68 HANDOUT Center for Psychiatric Rehabilitation Sargent College of Health and Rehabilitation Sciences Roadmap to Seclusion and Restraint Free Mental Health Services Research, Training, and Technical Assistance Centers (continued) • Special topic technical assistance and training National Association of State Mental Health Program Directors 66 Canal Center Plaza Suite 302 Alexandria, VA 22314 Phone: (703) 739-9333 Fax: (703) 548-9517 www.nasmhpd.org/ntac.cfm • Consensus development conferences and teleconferences • Consultant database • Publications and reports • Model service system standards review and analysis • Centralized repository for training and technical assistance information and coordination for federally mandated Protection and Advocacy (P&A) programs Training and Advocacy Support Center (TASC) National Association of Protection and Advocacy Systems 900 Second Street, NE Suite 211 Washington, DC 20002 Phone: (202) 408-9514 Fax: (202) 408-9520 TTY: (202) 408-9521 E-mail: info@napas.org www.napas.org • Information dissemination via a Web page, online interactive library, publications, and public service announcements • Technical assistance with expertise rosters/brokering and P&A legal backup centers • On-site peer consultation, development of model policies and procedures, and outcome measures to increase P&A effectiveness • On-site training, conferences, tapes and other visual or auditory training tools, and development of competency-based curriculum systems Projects for Assistance in Transition from Homelessness (PATH) Technical Assistance Center • Training curricula in topic areas identified through a comprehensive needs assessment of State PATH contacts Advocates for Human Potential, Inc. 490-B Boston Post Road, Suite 200 Sudbury, MA 01776 Phone: (978) 443-0055 Fax: (978) 443-4722 E-mail: info@ahpnet.com www.ahpnet.com • Ad hoc technical assistance to State and local PATH programs in response to special requests Page 3 of 5 Module 5 Strategies to Prevent Seclusion and Restraint 69 HANDOUT • State, regional, and national consultation National Technical Assistance Center (NTAC) for State Mental Health Planning Roadmap to Seclusion and Restraint Free Mental Health Services Research, Training, and Technical Assistance Centers (continued) • Integrated technical assistance network for knowledge development • Analysis of state-of-the-art practices and synthesis documents Policy Research Associates, Inc. The GAINS Center 345 Delaware Avenue Delmar, NY 12054 Phone: (800) 311-4246 Fax: (518) 439-7612 Email: Gains@prainc.com www.prainc.com • Targeted fact sheets, briefs, and brochures • Specially designed training sessions and workshops delivered on-site and via e-mail • Resource center for consumers/survivors/ ex-patients and consumer-run organizations across the United States Consumer Organization and Networking Technical Assistance Center (CONTAC) West Virginia Mental Health Consumers Association P.O. Box 11000 Charleston, WV 25339 Phone: (888) 825-TECH (8324) (304) 345-7312 Fax: 304-345-7303 www.contac.org • Services include materials development and dissemination, training, skill development, interactive communication opportunities, networking, and other activities to promote self-help, recovery, and empowerment • Technical assistance to organizations in identifying and exemplifying points of entry into consumer programs • Outcome orientation for non-traditional services • Leadership and organizational development • Information sharing through a national Web network • Information and referrals National Consumer Supporter Technical Assistance Center • Technical assistance on site and by phone 2001 N. Beauregard Street, 12th Floor Alexandria, VA 22311 Phone: (800) 969-6642 Fax: (703) 684-5968 E-mail: consumerTA@nmha.org www.ncstac.org • Resource library • Coordination of local coalitions • Training conference Page 4 of 5 Module 5 Strategies to Prevent Seclusion and Restraint 70 HANDOUT The National GAINS Center for People with Co-Occurring Disorders in the Criminal Justice System Roadmap to Seclusion and Restraint Free Mental Health Services Research, Training, and Technical Assistance Centers (continued) • Technical assistance in developing programs of assertive community treatment Colonial Place Three 2107 Wilson Boulevard Suite 300 Arlington, VA22201 Phone: (703) 524-7600 (800) 950-NAMI (6264) TDD: (703) 516-7227 Fax: (703) 524-9094 E-mail: Elizabeth@nami.org www.nami.org/about/pact.htm • Teleconferences on various aspects of PACT program planning and implementation • Information dissemination via mail and a Web site National Center for American Indian and Alaska Native Mental Health Research • Research, research training, University of Colorado Health Sciences Center Department of Psychiatry Nighthorse Campbell Native Health Building P.O. Box 6508, Mail Stop F800 Aurora, CO 80045-0508 Phone: (303) 724-1448 Fax: (303) 724-1474 www.uchsc.edu/ai/ncaianmhr • Technical assistance provided on American Indian and Alaska Native populations. National Empowerment Center • Consumer/survivor ex-patient TA 599 Canal Street Lawrence, MA 01840 Phone: (800) 769-3728 Fax: (978) 681-6426 www.power2u.org • Information and referrals • Information dissemination • Cross site evaluation of 9 sites in the Circles of Care grant program. • Technical assistance on site and by phone Page 5 of 5 Module 5 Strategies to Prevent Seclusion and Restraint 71 HANDOUT National Alliance for the Mentally Ill Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 5 - REFERENCES Alty, A. (1997). Nurses’ learned experience and expressed opinions regarding seclusion practices within one NHS Trust. Journal of Advanced Nursing, 25, 786-793. Blackwell, B. (Ed.) (1997). Treatment compliance and the therapeutic alliance. Amsterdam: Harwood Academic Publishers. Blanch, A. (2000, Fall). Mental health systems try new approaches to conflict resolution. Networks. Online at www.nasmhpd.org/ntac. Blanch, A., Glover, R., Mazade, N.. & Petrila, J. (1995). Enhancing problem-solving in the public mental health system through mediation: Final report to the Center for Mental Health Services. Alexandria, VA: National Association of State Mental Health Program Directors; Tampa, FL: The Florida Mental Health Institute, University of South Florida. Bluebird, G. Comfort rooms. Presentation materials used with permission. www.contact.org/bluebird Bluebird, G. (2001). Reaching across with the arts: A self-help manual for mental health consumers. Rockville, MD: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services. Campbell, J. (1989) People say I’m crazy. San Francisco: California Department of Mental Health. Canatsey, K., & Roper, J. (1997). Removal from stimuli for crisis intervention: Using least restrictive methods to improve the quality of patient care. Issues in Mental Health Nursing, 18, 35-44. Cassou, M., & Cubley, S. (1996). Life, paint, and passion: Reclaiming the magic of spontaneous expression. New York: G.P. Putnam. Clay, S. (Ed.). (1982). Take horses for instance: A poetry book. Portland Coalition of the Psychiatrically Labeled. Out of Print. Clement, J.A., & Schwebel, A.I. (1997). Mediation: An intervention to facilitate empowerment of mental health consumers. In E. Kruk (Ed.), Mediation and conflict resolution in social work and human services (pp. 195-210). Chicago, IL: Nelson-Hall. Copeland, M.E. (1994). Living without depression and manic depression. Oakland, CA: New Harbinger Publications. Copeland, M.E. (1997). Wellness Recovery Action Plan. W. Dummerston, VT: Peach Press. Copeland, M.E. (1999). Winning against relapse. Oakland, CA: New Harbinger Publications. Copeland, M.E. (2001). The depression workbook (2nd ed.). Oakland, CA: New Harbinger Publications. Copeland, M.E. (2002, February). Mental Health Recovery Newsletter. W. Dummerston, VT. Cousins, N. (1981). Anatomy of an illness as perceived by the patient: Reflections on healing and regeneration. New York: Norton. Page 1 of 4 Module 5 Strategies to Prevent Seclusion and Restraint 72 HANDOUT Allen, K. (1996). The role of pets in health and illness. In C. Klug (Ed.), Studies in health and human services: Vol. 25. Suicide: The constructive/ destructive self. Lewiston, Ontario: Edwin Mellen Press. Roadmap to Seclusion and Restraint Free Mental Health Services Module 5 - References (continued) Darby, M. (1996). Use it or lose it: Humor and the treatment of mental illness. Omaha, NE: Surprise!!! Publishing. Davidson, L., & Strauss, J.S. (1992). Sense of self in recovery from severe mental illness. British Journal of Medical Psychology, 65, 131-145. Fleischner, R.D. (1998). Advance directives for mental health care: An analysis of State statutes. Psychology, Public Policy, and Law, 4(3), 788-804. Harding, C.M., & Zahniser, J.H. (1994). Empirical correction of seven myths about schizophrenia with implications for treatment. Acta Scandinavica, 90, 140-146. Harding, C.M., Zubin, J.,& Strauss, J.S. (1992). Chronicity in schizophrenia: Revisited. British Journal of Psychiatry, 161 (Supp.18), 27-37. Holzworth, R., & Wills, C. (1999). Nurses’ judgments regarding seclusion and restraint of psychiatric patients: A social judgment analysis. Research in Nursing and Health, 22, 189-201. Jamison, K.R. (1993). Touched with fire: Manic depressive illness and the artistic temperament. New York: Simon & Schuster. Jennings, A. (1994). Imposing stigma from within: Retraumatizing the victim. Resources, 6(3), 11-15. Johnson, M. (1998). A study of power and powerlessness. Issues in Mental Health Nursing, 19, 191-206. Joint Commission on Accreditation of Healthcare Organizations (JCAHO). (1999). Testimony at Senate hearings. Katz, A.H., et al. (Eds.). (1992). Self-help concepts and applications. Philadelphia, PA: Charles Press. Lehane, M., & Rees, C. (1996). Alternatives to seclusion in psychiatric care. British Journal of Nursing, 5, 97-99. Ludwig, A.M. (1996). The price of greatness: Resolving the creativity and madness controversy. New York: Guilford Press. Martinez, R., Grimm, M., & Adamson, M. (1999). From the other side of the door: Patient views of seclusion. Journal of Psychosocial Nursing, 73(3),13-22. Maier, G. (1996). Managing threatening behavior. The role of talk down and talk up. Journal of Psychosocial Nursing, 9, 25-30. Mazade, N., Blanch, A., & Petrila, J. (1994). Mediation as a new technique for resolving disputes in the mental health system. Administration and Policy in Mental Health 21(5), 431-445. Morales, E., & Duphome, P. (1995). Least restrictive measures: Alternatives to four-point restraints and seclusion. Journal of Psychosocial Nursing and Mental Health Services, 33, 13-16; 42-43. Page 2 of 4 Module 5 Strategies to Prevent Seclusion and Restraint 73 HANDOUT Curie C. (2002) A conversation with Charles Curie, SAMHSA Administrator. Online at http://www. omh.state.ny.us/omhweb/omhq/q1202/SAMSHA.htm. Roadmap to Seclusion and Restraint Free Mental Health Services Module 5 - References (continued) National Association of Consumer/Survivor Mental Health Administrators. (2000). In Our Own Voices Survey. An unpublished survey. National Association of State Mental Health Program Directors (MASMHPD). (1998). Position statement on consumer contributions to mental health service delivery systems. Alexandria, VA: Author. National Mental Health Association. (2004). Psychiatric advance directive practice worksheet. Accessed online at www.nmha.org/position/advance directives/PAD/Worksheet.pdf Petrilla, J., Mazade, N., Blanch, A., & Glover, R. (1997). Mediation: An alternative for dispute resolution in managed behavioral healthcare. Behavioral Healthcare Tomorrow, 6(1), 26-32. Retzinger, S. (1990). Mental illness and labeling. Mediation Quarterly, 8, 151-159. Ridgely, S., & van den Berg, P. (1997, April). Women and coercion: Commitment, involuntary treatment, and restraint. Tampa, FL: Louis de la Parte Florida Mental Health Institute, Department of Mental Health Law and Policy. Rogers, J. (1995). Work is key to recovery. Psychosocial Rehabilitation Journal, 18(4), 5-10. Rooney, R.H. (1992). Strategies for work with involuntary clients. New York: Columbia University Press. Schmitz, S.J. (1998). Mediation and the elderly: What mediators need to know. Mediation Quarterly 16(1), 71-84. Schwebel, A.I., & Clement, J.A. (1996). Mediation as a mental health service: Consumers’ and family members’ perspectives. Psychiatric Rehabilitation Journal, 20(1), 55-58. Shore, S.E., & Curtis, L.C. (1997). Managing workplace conflict: A skills training manual for mental health consumers and supervisors. Chicago, IL: University of Illinois at Chicago, National Research and Training Center on Psychiatric Disability. Smith, M.K., & Ford, J. (1986). Client involvement: Practical advice for professionals. Psychosocial Rehabilitation Journal, 9(3), 25-34. Spaniol, L., Gagne, C., & Koehler, M. (1997). Recovery from serious mental illness: What it is and how to assist people in their recovery. Continuum, 4(4), 3-15. Spaniol, S.E. (1990). Exhibiting art by people with mental illness: Issues, process, and principles. Art Therapy, 7(2), 70-78. Spaniol, S.E. (1993). An exploratory study of the perception of artists who have experienced mental illness. Unpublished doctoral dissertation, Boston University, Boston, MA. Stevenson, S. (1991). Heading off violence with verbal de-escalation. Journal of Psychosocial Nursing, 29, 6-10. Sullivan, A., Nicolellis, D.L., Danley, K.S., & MacDonald-Wilson, K. (1993). Choose-get-keep: A psychiatric rehabilitation approach to supported education. Psychosocial Rehabilitation Journal, 17(1), 55-68. Page 3 of 4 Module 5 Strategies to Prevent Seclusion and Restraint 74 HANDOUT Morrison, E. (1992). A coercive interactional style as an antecedent to aggression in psychiatric patients. Research in Nursing and Health, 15, 421-431. Roadmap to Seclusion and Restraint Free Mental Health Services Module 5 - References (continued) Tenney, L. (2001). My prime directive. Albany, NY: New York State Office of Mental Health. U.S. Department of Health and Human Services (DHHS). (2001). Consumer/Survivor-Operated Self-Help Programs: A Technical Report. Rockville, MD: Substance Abuse and Mental Health Services Administration, Center for Mental Health Services. U.S. Department of Health and Human Services. (2001). Consumer/survivor-operated self-help programs: A technical report. Rockville, MD: Author. U.S. Department of Health and Human Services. (2002). Action planning for prevention and recovery: A self-help guide. DHHS Pub. No. SMA-3720. Rockville, MD: Author. U.S. Department of Health and Human Services. (2002). Building self-esteem: A self-help guide. DHHS Pub. No. SMA-3715. Rockville, MD: Author. U.S. Department of Health and Human Services. (2002). Developing a recovery and wellness lifestyle: A self-help guide. DHHS Pub. No. SMA-3718. Rockville, MD: Author. U.S. Department of Health and Human Services. (2002). Making and keeping friends: A self-help guide. DHHS Pub. No. SMA-3716. Rockville, MD: Author. U.S. Department of Health and Human Services. (2002). Recovering your mental health: A self-help guide. DHHS Pub. No. SMA-3504. Rockville, MD: Author. U.S. Department of Health and Human Services. (2002). Speaking out for yourself: A self-help guide. DHHS Pub. No. SMA-3719. Rockville, MD: Author. White, B.J., & Madera, E.J. (1998). The self-help source book: Finding and forming mutual aid self-help groups. Cedar Knolls, NJ: American Self-Help Clearinghouse. Wooldridge, S.G. (1996). Poemcrazy. New York: Three Rivers Press. Page 4 of 4 Module 5 Strategies to Prevent Seclusion and Restraint 75 HANDOUT Tenney, L. (2001). My prime directive journal. Albany, NY: New York State Office of Mental Health. Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 6 Sustaining Change Through Consumer and Staff Involvement 1 Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 6 Sustaining Change Through Consumer and Staff Involvement “The terror of confinement, the pain of restraint, and the wound to my soul made me want to stay as far away from the mental health system as possible. It didn’t matter that it might offer me something helpful; I didn’t want any of it if that horrible experience was going to be a part of the package.” —Will Pflueger, Consumer “I encourage you to make meaningful changes regarding physical restraint standards in psychiatric facilities by seeking the help of Psychiatric Technicians as change agents and champions of the cause.” —George Blake, Ph.D., American Association of Psychiatric Technicians Learning Objectives Upon completion of this module, the participant will be able to: • Recognize leadership roles for administration, staff, and consumers in the elimination of seclusion and restraint. • Describe the role of the Office of Consumer Affairs/Consumer Advocate and the role they play in eliminating the use of seclusion and restraint. • Outline key elements of debriefing, advance crisis management, and data collection. • Outline the pros and cons of having an external monitoring system related to seclusion and restraint. • Identify key characteristics of the role of the champion. Module 6 Sustaining Change Through Consumer and Staff Involvement 2 Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 6: SUSTAINING CHANGE THROUGH CONSUMER AND STAFF INVOLVEMENT Background for the Facilitators. . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Presentation (3 hours) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Leadership . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Exercise: National Technical Assistance Center Networks . . . . (15 minutes) Exercise: Direct Care Staff Leadership (15 minutes) . . . . . . . Debriefing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Exercise: Debriefing Role Play (25 minutes) . . . . . . . . . . . . . Advance Crisis Planning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Video: Increasing Self-Determination: Advance Crisis Planning (13 minutes) Data Collection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . External Monitoring . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Role of the Champion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Journal/Take Action Challenge (20 minutes) . . . . . . . . . . . . . . . . . . . . 10 . 11 . 12 . 20 . . . . . . . . 21 22 26 28 . . . . . . . . 29 30 33 34 Handouts for Participants . . . . . . . . . . . . . . . . . . . . . . . . . Journal Topics and Take Action Challenges for Modules 5 & 6 Protection and Advocacy Offices . . . . . . . . . . . . . . . . . . . . National Technical Assistance Center Networks Newsletter . . Debriefing Survey for Consumers. . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 . 35 . 37 . 51 . 53 . 54 Module 6 . . . . . . . . . . . . . . . . . . Sustaining Change Through Consumer and Staff Involvement 3 Roadmap to Seclusion and Restraint Free Mental Health Services Overview Change is hard work. Once change has begun, it is necessary to sustain positive changes through consumer and staff involvement if the goal of eliminating seclusion and restraint is to be reached. Various strategies for sustaining change are addressed in this module. Leadership Every group within the mental health system has a leadership role. Each should take responsibility for making sustainable changes in the system. Administrative/Management Leadership The administration/management has the most power to make structural changes within the system. Administrative/management staff sets the stage in creating a culture that minimizes the use of seclusion and restraint while promoting a safe environment for clients and staff. First, administrators/management must carefully examine their own beliefs and assumptions about seclusion and restraint in order to wholeheartedly buy into a respectful treatment system without the use of seclusion and restraints. The administration/management controls the policies and the overall climate of the system. Mission statements, formal policies, and everyday practices need to be examined. The administration/management provides the leadership, vision, and planning for moving to a restraintfree environment. On a practical level, when top administration/management is involved with every post-seclusion/restraint debriefing in a supportive and problem-solving manner, (not a fault-finding manner), the use of seclusion and restraint decreases. It is administration/management’s job to provide for ample staffing, staff training, and continuing in-service trainings. In order to maintain a level of consciousness about seclusion and restraint, administration has the responsibility to ensure the issue of seclusion and restraint is on the agenda in every facility, from the housekeeping department to the board of directors. Leadership at this level is critical in developing the atmosphere of respect and concern for consumers that is necessary to minimize the use of seclusion and restraint. Consumer Leadership Consumers bring a unique perspective; their experiential knowledge is vital to any discussion about cultural change. All persons deserve to participate in decisions that affect their lives; no one can speak for consumers. Multiple perspectives from all stakeholders are keys to good decisionmaking. Module 6 Sustaining Change Through Consumer and Staff Involvement 4 BACKGROUND BACKGROUND FOR THE FACILITATORS: SUSTAINING CHANGE THROUGH CONSUMER AND STAFF INVOVLEMENT Roadmap to Seclusion and Restraint Free Mental Health Services Office of Consumer Affairs/Consumer Advocates In January 2005, 45 States had Office of Consumer Affairs (OCA) positions within State mental health agencies. An OCA is a vehicle to ensure that a variety of consumer/survivor voices are heard within meaningful system change initiatives, at local, regional, and statewide meetings, forums, legislative hearings, and workgroups that focus on policy and regulations. OCAs support ongoing training to all stakeholders and agencies providing services to people using mental health services on the principles of recovery, self-determination, advance crisis planning, etc. OCA positions strategically placed within State hospitals and on executive teams demonstrate commitment to the principles of equality and inclusion of consumers and advocates in changing the culture that tolerates seclusion and restraint. For further information on establishing an OCA position within State hospital settings, go to the National Association of Consumer/ Survivor Mental Health Administrators Web page at www.nasmhpd.org. The goal of a consumer advocate is to represent consumers/families/guardians from their perspective, and to promote the highest standard of care for people receiving treatment for mental illnesses. The job of a consumer advocate is to ensure that consumer rights are protected. This may include receiving and assessing complaints regarding a consumer’s rights, dignity, care, and treatment. On a local or regional level, a consumer advocate provides education, advice, or consultation on issues, standards, and policies to promote the highest standard of care and treatment for persons diagnosed with a mental illness. This means meeting with families, guardians, consumers, and staff to provide training and consultation on consumer rights. The consumer advocate may review and monitor facility policies and procedures that impact consumer rights. The consumer advocate also reviews and responds to all incident reports and makes recommendations as needed. The Protection and Advocacy (P&A) System and Client Assistance Program (CAP) comprise the nationwide network of congressionally mandated legally based disability rights agencies. P&A employees encourage a nonadversarial approach and strive for a partnership perspective in their work. P&A Offices were established to address the public outcry in response to the abuse, neglect, and lack of programming in institutions for persons with disabilities. P&A agencies have the authority to provide legal representation and other advocacy services, under all Federal and State laws, to all people with disabilities (based on a system of priori- Module 6 Sustaining Change Through Consumer and Staff Involvement 5 BACKGROUND The term “meaningful involvement” is frequently heard. What does this mean? According to Darby Penney (1999), meaningful involvement is: • Beyond tokenism: Involved in sufficient numbers to have real influence. • Beyond review and comment: Involved in framing the issues and setting the agenda. • Beyond advice: Participating in governance and policymaking. • Beyond sign-off: Directing one’s own recovery. Roadmap to Seclusion and Restraint Free Mental Health Services Direct Care Staff Leadership Leadership qualities are important to individuals who are responsible for the safety of consumers as well as their own safety. Direct care staff can play many roles. Examples include being an advocate, a whistle blower, or assisting with the tracking of data. The exercise in this section empowers staff to acknowledge and develop their own skill set. Debriefing Debriefing should always be done after an incident of seclusion or restraint. Debriefing can be used for different purposes, such as risk management, quality improvement, or staff support. For example, if the purpose of a debriefing is risk management, then it will be important to conduct a root cause analysis, including a behavioral and physical assessment, observation procedures, care planning process, staffing, training, competency, supervision, communication, etc. However, if the purpose of the debriefing is to assist quality improvement, it would be important to look at what part of the system failed and how the incident could be prevented in the future. And finally, if the purpose of the debriefing is staff support, it would be important to focus on the physical, psychological, and emotional needs of the staff involved in the traumatic incident. The purpose of the debriefing will help determine who should be present, e.g., staff, consumer/survivor, family members, or advocates. One staff member, trained in the debriefing process, sets the stage for the debriefing. This person explains the situation and the purpose of the meeting and establishes ground rules. Examples of ground rules include confidentiality, no one is forced to talk, and only respectful communication is allowed to promote emotional safety. One debriefing model (adapted from Rupert Goetz, M.D., Medical Director, Hawaii State Hospital, 2002) has four distinct sections: facts, feelings, education, and planning. The facts section reviews what is known to be true. Rumors, hearsay, and speculation are labeled as such. In the next phase, feelings are explored. It is important to separate the facts from the feelings. During the feelings section, each person has an opportunity to express his or her own feelings about the situation. Often, a wide variety of feelings are expressed and it is important to validate all of them. During the education section, it is often helpful to review normal adaptive responses to stress as well as maladaptive responses. It is often helpful for staff and consumers to be reminded of common reactions to stress and trauma. Finally, in the planning section, the facilitator discusses any follow-up and recommends steps for members of the debriefing team to take. Module 6 Sustaining Change Through Consumer and Staff Involvement 6 BACKGROUND ties for services). These agencies also devote considerable resources to ensuring full access to inclusive educational programs, financial entitlements, health care, accessible housing, and productive employment opportunities. A listing of P&A Offices by State is included in the handouts for this module. For more information on Protection and Advocacy, please visit www.napas.org. Roadmap to Seclusion and Restraint Free Mental Health Services The University of Illinois at Chicago National Research and Training Center on Psychiatric Disability (phone: 312-422-8180) has developed a toolkit and training manual, Increasing Self-Determination Through Advance Crisis Management in Inpatient and Community Settings: How to Design, Implement, and Evaluate Your Own Program. As a facilitator, you may find it useful to use this toolkit. The fundamental values underlying the Advance Crisis Management initiative is the belief that people’s crises would be addressed more humanely if they were allowed to specify in advance actions to be taken during times when they are too distressed to make decisions. Another resource is the Wellness Recovery Action Plan (WRAP) developed by educator/consumer Mary Ellen Copeland. One section in the WRAP specifically addresses the need for advance crisis planning. Data Collection The Bazelon Law Center for Mental Health Web site at www.bazelon.org suggests the following regarding reporting of seclusion and restraint use: Facilities are required to report any serious occurrence, such as death, serious injury, or a suicide attempt to the State Medicaid agency and the State protection and advocacy agency, unless prohibited by State law. This reporting must occur by the close of business of the next business day after the occurrence and include the name of the resident; a description of the occurrence; and the name, street address, and telephone number of the facility. Staff must document in the resident’s record that this report was made and keep a copy of the report in the resident’s record. Reporting of the death of any resident must also be made to the Centers for Medicare and Medicaid Services (CMS) regional office. In addition, every incident of seclusion and restraint should be documented and reported in a systematic way so trends can be analyzed and improvements made. Pennsylvania found that making data publicly accessible was one of the key components to decreasing the use of seclusion and restraint in their State hospitals (Pennsylvania Department of Public Welfare, 2001). Making data public fostered a healthy competition between hospitals to decrease the incidences of seclusion and restraint. A performance improvement and monitoring program designed to continuously review, assess, and analyze the facility’s use of seclusion and restraints should also be in place. Module 6 Sustaining Change Through Consumer and Staff Involvement 7 BACKGROUND Advance Crisis Planning Individual treatment plans have goals and interventions jointly defined by the consumer, family, and treatment team to eliminate the need for seclusion and restraints. When an incident of seclusion or restraint occurs, it is important to document all forms of de-escalation that were attempted to prevent seclusion and restraint and their effects. Input from the consumer about what worked and what didn’t should also be included. Finally, treatment plans need to be easily accessible and readily available to staff. Roadmap to Seclusion and Restraint Free Mental Health Services Monitors are allowed to visit, unannounced at any time—24 hours a day, 7 days a week. Monitors document items such as time of day, number of consumers on the census, number of consumers currently on the unit (and where they are if not on the unit), activities, amount of interaction between staff and consumers, physical surroundings, overall appearance and cleanliness of the facility, how consumers are dressed, supplies available to consumers, quality and choice of food, etc. Monitors file a written report within an agreed upon time period—typically 2 to 5 days after their visit. The facility coordinator responds to the report in a timely manner. In order to make sure the monitoring system is functioning smoothly, it is important for key staff (e.g., CEO, Director of Nursing, and Facility Coordinator) and monitors to meet on an ongoing basis. Often this is done quarterly. External monitors can raise the consciousness of key State and local policymakers, educate the public about the needs and problems of consumers, and encourage the development of effective community-based alternatives. A successful example of this type of program is the Child Watch Visitation Program, an initiative of the Children’s Defense Fund. A document on this program, Checking Up on Juvenile Justice Facilities: A Best Practices Guide, released by the National Mental Health Association (www.nmha.org/children/justjuv/checking UpOnJJFacilities.cfm), could be used as a guide for developing external monitoring programs (Siegfried, 1999). Initially, hospital staff may be resistant to having outsiders evaluate the physical surroundings and milieu. Over time, however, external monitors and staff often see the advantages of working together and they join forces to improve the overall experience for consumers. Typically, a staff person is designated as the facility coordinator for the external monitoring group. The facility coordinator also helps train both monitors and staff. Monitors go through an extensive training that covers topics such as confidentiality, what to look for on a site visit, how to accurately document, how to write a report, how to follow up on issues, and how to report emergency issues. Included in the training is a clear understanding that monitors are not there to evaluate clinical issues—they are there to evaluate milieu issues. Staff are also trained in these issues so there is no misunderstanding about the purpose and parameters of external monitoring. Module 6 Sustaining Change Through Consumer and Staff Involvement 8 BACKGROUND External Monitoring External monitoring groups may consist of consumer advocates, family members, and concerned citizens. The overall goal of citizen monitoring groups is to improve and enhance the quality of life for consumers while they are receiving mental health treatment. In addition, external monitoring groups promote effective communication between consumers, staff, and families. According to NAMI, “Some State hospital systems and some facilities such as Delaware, Massachusetts, New Hampshire, New Jersey, and Pennsylvania, have reduced the use of seclusion and restraints by using third party citizen, consumer, and family monitoring groups” (see www.nami.org). Roadmap to Seclusion and Restraint Free Mental Health Services The role of the champion is a difficult and sometimes lonely role. If someone chooses to accept this role, the rewards are many. Change is up to the individual. Nobody can make someone else change. All we can do is offer suggestions and increase awareness. The privilege and responsibility is up to the individual. Shared vision is rooted in personal vision. Mandates attempt to establish visions from the top. But real vision comes from within. It is about solving the day-to-day problems by keeping that personal vision in mind. It is our hope that people who participate in this training will, with a personal commitment, join in establishing a treatment culture dedicated to eliminating seclusion and restraint within psychiatric treatment settings for all people of all ages. Module 6 Sustaining Change Through Consumer and Staff Involvement 9 BACKGROUND Role of the Champion Given the magnitude and complexities of the mental health system and its bureaucracy, many roles are open for systems change agents. Some are in administration. Some are in the legislature and consumer and family organizations. However, each one of us here has a personal and professional role to play—the role of champion. It is our personal commitment to making a difference wherever we are and in whatever capacity we find ourselves. For example, if someone were using language that is stigmatizing or telling a joke at the expense of another, what would a champion do? If one were asked to serve on a committee to look at policies within the unit or facility, what would a champion do? How does a champion implement or suggest to his or her supervisor that a philosophy of recovery be implemented on the unit? Roadmap to Seclusion and Restraint Free Mental Health Services Welcome participants, review names, and make sure everyone has a nametag or name tent. It may be helpful to provide a quick review of Module 5: Strategies to Prevent Seclusion and Restraint. Ask each participant to share one of the Take Action Challenges from Module 5 and report on their progress. Then go over the learning objectives for this module. Learning Objectives Upon completion of this module the participant will be able to: Module 6 • Recognize leadership roles for administration, staff, and consumers as they relate to the elimination of seclusion and restraint • Describe the role of the Office of Consumer Affairs/Consumer Advocate in eliminating the use of seclusion and restraint • Identify key elements of debriefing, advance crisis management, and data collection and analysis • Outline the pros and cons of having an external monitoring system related to seclusion and restraint • Identify key characteristics of the role of the champion Sustaining Change Through Consumer and Staff Involvement 10 PRESENTATION PRESENTATION Roadmap to Seclusion and Restraint Free Mental Health Services Overview • In an ideal world, there would be no use of seclusion or restraint. • However, we understand we do not always live in an ideal world and recognize that sometimes seclusion and restraints are used. • This module will explore ways of sustaining change through consumer and staff involvement in eliminating the use of seclusion and restraint via leadership, Office of Consumer Affairs, debriefing, updating treatment plans, data collection, and external monitoring. • Staff and consumers have important leadership roles in eliminating the use of seclusion and restraint. • In the unfortunate event that seclusion and restraint do occur, several key things need to happen. • All consumers, family members, or identified significant others need to be informed immediately about any use of seclusion and/or restraint. • Consumer advocates need to be included in debriefing sessions and their knowledge utilized for preventing future seclusion and restraint. • The Office of Consumer Affairs can ensure that a variety of consumer/survivor voices are heard within meaningful system change initiatives and can provide ongoing training for all stakeholders. • Following any use of seclusion and/or restraint, consumers should participate in debriefing sessions with their primary caregivers using clear words that consumers can understand. This helps with symptom recognition and earlier de-escalation, and promotes problemsolving and conflict resolution skills. Module 6 Sustaining Change Through Consumer and Staff Involvement 11 PRESENTATION “The terror of confinement, the pain of restraint, and the wound to my soul made me want to stay as far away from the mental health system as possible. It didn’t matter that it might offer me something helpful; I didn’t want any of it if that horrible experience was going to be a part of the package.” Will Pflueger, Consumer Roadmap to Seclusion and Restraint Free Mental Health Services Leadership • Every group within the mental health system has a leadership role. This includes administrators/managers, direct care staff, consumers, and families. • Each group should take responsibility for making sustainable changes in the system. Administrative/Management Leadership • Administrative staff sets the stage in creating a culture that minimizes the use of seclusion or restraint while promoting a safe environment for clients and staff. • Administrators must carefully examine their own beliefs and assumptions about seclusion and restraint in order to wholeheartedly buy into a respectful treatment system without the use of seclusion and restraints. • Administrators and leaders from all levels of the organization need to make highly visible statements and actions in support of change. Administrators can sustain change by providing: Module 6 • Policies and procedures that move toward a seclusion and restraint free environment • Adequate staffing • Staff training and continuous in-service training • Placing seclusion and restraint training on all meeting agendas from the housekeeping department to the board of directors • Personal involvement in debriefing after every incident of seclusion or restraint in a supportive and problem-solving manner Sustaining Change Through Consumer and Staff Involvement 12 PRESENTATION • Staff also needs to debrief on their own involvement in the seclusion and restraint. • Advance crisis management needs to take place, including updating treatment plans. • It is critical to collect data and make it readily available. Data is particularly helpful in looking at trends over time and understanding potential underlying reasons for the use of seclusion and restraint. • External monitoring can improve communication between staff, consumers, and families and can help to improve the overall quality of life for consumers. Roadmap to Seclusion and Restraint Free Mental Health Services Meaningful Consumer Involvement means: • Beyond tokenism • Beyond review and comment • Beyond advice • Beyond sign-off • • • • Beyond tokenism: Involved in sufficient numbers to have real influence. Beyond review and comment: Involved in framing the issues and setting the agenda. Beyond advice: Participating in governance and policymaking. Beyond sign-off: Directing one’s own recovery through self-management (e.g., advance directives, WRAP). • Educating consumers and nonconsumers through articles, lectures, and workshops as exemplified in the exercise using the Networks newsletter article. • As of January 2005, 45 States have Offices of Consumer Affairs (OCAs). Module 6 Sustaining Change Through Consumer and Staff Involvement 13 PRESENTATION Consumer Leadership • Consumers bring a unique perspective; their experiential knowledge is vital to any discussion about sustaining cultural change. • According to Darby Penney, past president of NAC/SMHA, “Consumers need meaningful involvement” (Penney, 1999). Roadmap to Seclusion and Restraint Free Mental Health Services • An OCA is an element of empowerment for people who have been diagnosed with mental illness or psychiatric disability. • Although an Office of Consumer Affairs is representative of consumer concerns and issues, it must take into consideration other stakeholders’ opinions as well if the office is to ensure that the consumer voice is heard and considered in policy, planning, and practice development. • The OCA is a focal point for consumer/survivor/ex-patient concerns and information. • The Director advocates for the consumer perspective within the mental health authority and works to increase consumer participation in a variety of areas to produce change in types of services and how they are provided. Module 6 Sustaining Change Through Consumer and Staff Involvement 14 PRESENTATION An Office of Consumer Affairs (OCA) is a vehicle to ensure that a variety of consumer/survivor voices are heard within meaningful system change initiatives. Roadmap to Seclusion and Restraint Free Mental Health Services • De-stigmatizing people diagnosed with mental illness or psychiatric disability • Ongoing process of consumer participation • Recognizing the civil and human rights of people diagnosed with mental illness/psychiatric disabilities OCA Areas of Responsibility Module 6 • Policy and Regulation Development • Program Planning • Evaluation and Monitoring • Training • Finance and Contract Management • Complaints and Grievances Sustaining Change Through Consumer and Staff Involvement 15 PRESENTATION Benefits of an Office of Consumer Affairs Roadmap to Seclusion and Restraint Free Mental Health Services Goals of Consumer Advocates • Represent consumers/families/ guardians from their perspective • Promote highest standard of care for people receiving treatment for a mental illness • The job of a consumer advocate is to ensure that consumer rights are protected. Module 6 Sustaining Change Through Consumer and Staff Involvement 16 PRESENTATION • The OCA serves as a system change agent. As a change agent within government, the OCA is responsible for raising tough issues. • Some of the issues are protection of consumer rights, the coerciveness of forced treatment, and any other topics that consumers raise as important issues to shape future policy, reshape services, or change priorities where other stakeholders may not be in agreement with consumers. ○ The goal of a consumer advocate is to represent consumers, families, and guardians from their perspective and to promote the highest standard of care for people receiving treatment for a mental illness. Roadmap to Seclusion and Restraint Free Mental Health Services Protect Consumer Rights! • Protecting consumer rights might include receiving and assessing complaints regarding a consumer’s rights, dignity, care, and treatment. • On a local or regional level, a consumer advocate provides education, advice, or consultation on issues, standards, and policies. • Consumer advocates meet with families, guardians, consumers, and staff to provide training and consultation on consumer rights. • The consumer advocate may also review and monitor facility policies and procedures that impact consumer rights. • In relation to seclusion and restraint, a consumer advocate reviews and responds to all reports and makes recommendations as needed. • Other responsibilities of a consumer advocate may include those shown on this slide: Module 6 Sustaining Change Through Consumer and Staff Involvement 17 PRESENTATION Job of Consumer Advocate Roadmap to Seclusion and Restraint Free Mental Health Services • Administering de-escalation form • Making regular rounds on units • Being part of policymaking and new initiatives (e.g., comfort rooms, special programs, recognition, festivities) • Being present at team meetings • Being the “eyes and ears” for the administrator • Protection and Advocacy (P&A) Offices were established to address the public outcry in response to the abuse, neglect, and lack of programming in institutions for persons with disabilities. P&A Nationwide Network Protection and Advocacy is a nationwide network of congressionally mandated, legally based disability rights agencies Module 6 Sustaining Change Through Consumer and Staff Involvement 18 PRESENTATION Consumer Advocate Roles Roadmap to Seclusion and Restraint Free Mental Health Services • Provide legal representation • Maintain a presence in facilities, if possible • Monitor, investigate, and attempt to remedy adverse conditions Distribute handout Protection and Advocacy Offices. Tell participants to visit www.napas.org for the latest information. Module 6 Sustaining Change Through Consumer and Staff Involvement 19 PRESENTATION P&A Responsibilities: Roadmap to Seclusion and Restraint Free Mental Health Services National Technical Assistance Center Networks OBJECTIVE: Participants will explore personal feelings related to seclusion and restraint inspired by the essay of a consumer leader. Participants will be familiar with resources available (e.g., National Technical Assistance Center (NTAC) Networks newsletter). PROCESS: Ask each participant to read a copy of the National Technical Assistance Center Summer/Fall 2002 Networks newsletter article by Will Pflueger, “Consumer View: Restraint Is Not Therapeutic.” Read the discussion questions out loud. Direct participants to spend 5 minutes writing in their journal about any feelings they may have experienced as they participated in seclusion and restraint. Ask participants if anyone is willing to share their feelings with the group. DISCUSSION QUESTIONS: MATERIALS REQUIRED: • What kinds of feelings have you experienced as a result of using seclusion and restraint? • What is the personal impact on you when you use seclusion and restraint? • How accurate do you think this consumer is about the shame? National Technical Assistance Center Summer/Fall 2002 Networks newsletter article by Will Pflueger APPROXIMATE TIME REQUIRED: 15 minutes SOURCE: NTAC Networks newsletter Module 6 Sustaining Change Through Consumer and Staff Involvement 20 PRESENTATION Exercise/Discussion—Module 6 Roadmap to Seclusion and Restraint Free Mental Health Services Direct Care Staff Leadership OBJECTIVE: Identify how direct care staff can use their leadership skills to eliminate seclusion and restraint. PROCESS: Lead a brainstorming session, asking participants to list things they can do as leaders to change the culture within their workplace environment to move towards the elimination of seclusion and restraint. Write all ideas on the board. Highlight themes. DISCUSSION QUESTIONS: How can you take what you have learned from this training back to the unit? MATERIALS REQUIRED: Chalkboard/dry erase board, chalk/markers APPROXIMATE TIME REQUIRED: 15 minutes Module 6 Sustaining Change Through Consumer and Staff Involvement 21 PRESENTATION Exercise/Discussion—Module 6 Roadmap to Seclusion and Restraint Free Mental Health Services “I don’t know what caused me being put in seclusion. I have asked for 26 years because I NEVER want to cause that again.” Consumer, NAC/SMHA Survey • If seclusion and/or restraint does occur, it is important to discuss what happened and how to prevent it from happening again. • The following information on debriefing has been adapted from Rupert Goetz, M.D., Medical Director, Hawaii State Hospital, an expert on seclusion and restraint (Goetz, 2002). • Debriefing is always done after an incident of seclusion or restraint. • Debriefing can be used for different purposes, such as risk management, quality improvement, or staff support. Module 6 Sustaining Change Through Consumer and Staff Involvement 22 PRESENTATION Debriefing Roadmap to Seclusion and Restraint Free Mental Health Services • Risk Management • Quality Improvement • Staff Support • Depending on the purpose of the debriefing, it may look different from time to time. • Some facilities recommend doing two separate debriefings. The first one is a face-to-face discussion between the consumer and all staff involved, and discusses the circumstances that led to the use of seclusion or restraint and strategies that could be used to prevent future use. Parents or legal guardians may participate when appropriate. • A second debriefing is held among all staff members involved in the emergency safety situation and appropriate supervisory and administrative staff. These sessions include a discussion of the emergency safety situation that led to the use of seclusion or restraint, alternative techniques, any staff procedures that may be used to prevent the reoccurrence, and the outcomes. • It is important that the debriefing not be a “blame game.” This type of attitude will make debriefing ineffective. Module 6 Sustaining Change Through Consumer and Staff Involvement 23 PRESENTATION Debriefing can be used for different purposes: Roadmap to Seclusion and Restraint Free Mental Health Services • Discussion of the emergency safety situation that led to the use of seclusion or restraint • Alternative techniques • Staff procedures that may be used to prevent the reoccurrence • Outcomes • A staff member who is trained in the debriefing process sets the stage for the meeting. This person explains the situation and the purpose of the meeting and establishes ground rules. • Examples of ground rules include confidentiality, no one is forced to talk, and only respectful communication is allowed to promote emotional safety. • One model of debriefing, adapted from Rupert Goetz, M.D. (2002) has four distinct sections: facts, feelings, education, and planning. Module 6 Sustaining Change Through Consumer and Staff Involvement 24 PRESENTATION Staff Debriefing Sessions include the following: Roadmap to Seclusion and Restraint Free Mental Health Services Rupert Goetz, M.D. • Facts • Feelings • Education • Planning • The facts section reviews what is known to be true. Rumors, hearsay, and speculation are labeled as such. • During the feelings section, all feelings are explored. Each person has an opportunity to express his or her feelings. It is important for the leader to validate all feelings. • During the education section, it is helpful to review normal adaptive responses to stress as well as maladaptive responses. It is often helpful for staff and consumers to be reminded of common reactions to stress and trauma. • In the planning section, the facilitator discusses any follow-up that is going to happen and recommends steps for members of the debriefing team to take. • One useful tool, original source unknown, has been a survey for consumers. It can be given to the consumer/survivor to fill out before a debriefing session. Distribute handout Debriefing Survey for Consumers. Module 6 Sustaining Change Through Consumer and Staff Involvement 25 PRESENTATION Debriefing Model - Roadmap to Seclusion and Restraint Free Mental Health Services Debriefing Role Play OBJECTIVE: Understand the different roles for implementing an effective debriefing session. PROCESS: Invite the participants to volunteer for the following roles: Consumer Advocate, Director of the Office of Consumer Affairs, Consumer, two Direct Care Staff who restrained the consumer, one Consumer Family Member, Director of Nursing, Administrative Supervisor, Medical Director, and the Physician who ordered seclusion and restraint. You may adjust these roles as necessary, given the size of the class. If possible, have several people role play the role of the consumer—they can switch on and off with each other. Set the stage by reading out loud the following scenario: The consumer was admitted on an inpatient psychiatric locked unit early this morning. Initially, the consumer was cooperative with the admission procedure. When the admitting nurse began asking questions related to past trauma, the consumer became agitated and began to rock back and forth on the chair. The admitting nurse stopped asking questions about trauma and asked the consumer what would be helpful. The consumer said that all that would be helpful would be to “get out of here.” When the response from the nurse was, “No, that’s not possible at this time,” the consumer began to raise her/his voice, stand up, and look for a way out. The admitting nurse called for security which further agitated the consumer, who began looking for ways to protect her/himself. As the security staff approached the consumer, he/she began kicking, screaming, making threats, and attempted to bite two direct care staff. The consumer was subdued and forcefully taken down and removed to the seclusion/restraint room. The consumer continued to “struggle” and was subsequently put in four-point restraints face up. The consumer regained control and was released after 25 minutes in restraints. A debriefing session was set up for later that afternoon. Page 1 of 2 Module 6 Sustaining Change Through Consumer and Staff Involvement 26 PRESENTATION Exercise/Discussion—Module 6 Roadmap to Seclusion and Restraint Free Mental Health Services Debriefing Role Play (continued) Each person assumes a role and attempts to act out an effective debriefing session based on the above scenario. First, the staff will debrief by themselves. Next, the consumer and staff will jointly debrief the session. The audience is to listen and observe both the verbal and nonverbal language of all participants. Once the role play is completed, each actor gets to briefly discuss what it was like for him or her to be in that role. Finally, ask the audience to provide feedback along with the actors on what went well and what could have been done differently. DISCUSSION QUESTIONS: • • • • • What did staff do well in this debriefing? What did the consumer do well in this debriefing? How did the consumer advocate help? How did the Office of Consumer Affairs help? What could have been done to make this debriefing more useful for both staff and the consumer? MATERIALS REQUIRED: None APPROXIMATE TIME REQUIRED: 25 minutes Page 2 of 2 Module 6 Sustaining Change Through Consumer and Staff Involvement 27 PRESENTATION Exercise/Discussion—Module 6 Roadmap to Seclusion and Restraint Free Mental Health Services Show the first 13 minutes of the video Increasing Self-Determination: Advance Crisis Planning with Mental Health Consumers in Inpatient and Other Settings. Module 6 Sustaining Change Through Consumer and Staff Involvement 28 PRESENTATION Advance Crisis Planning • Advance crisis management is essential to preventing further use of seclusion and restraint. • The fundamental value underlying the Advance Crisis Management initiative is the belief that a person’s crisis would be addressed more humanely if he or she were allowed to specify in advance actions to be taken during times when he or she is too distressed to make decisions. • One of the important aspects of debriefing and updating treatment plans is to identify any triggers or precursors that might lead to the use of seclusion and restraint. • Individual treatment plans have goals and interventions jointly defined by the consumer, family, and treatment team to eliminate the need for seclusion or restraints. • Information for the individual treatment plan can be obtained from the initial assessment from the consumer when he or she entered the hospital. (Modules 2 and 5 addressed this issue.) • In Mary Ellen Copeland’s WRAP, there is a section on crisis planning which is covered in Module 5. Refer back to it if needed. • Documentation of all forms of de-escalation that were attempted to prevent seclusion and restraint and their effect should be included in the treatment plan. • Input from the consumer about what worked and what didn’t should also be in the treatment plan. • We recommend using the video Increasing Self-Determination: Advance Crisis Planning with Mental Health Consumers in Inpatient and Other Settings developed by the University of Illinois at Chicago, National Research and Training Center on Psychiatric Disability. The video may be obtained in one of the following ways: (1) calling Jeff Parks at (312) 422-8180, ext. 10 or Tina Carter, ext. 11; (2) writing to the National Research and Training Center on Psychiatric Disability, Attn: Dissemination Coordinator, 104 South Michigan Avenue, Suite 900, Chicago, IL 60603, or (3) visiting the Web site at www. psych.uic.edu/mhsrp. Roadmap to Seclusion and Restraint Free Mental Health Services • Information from the treatment plan needs to be accessible. Some hospitals have been very creative with this. One example is having an index card easily accessible to staff that lists de-escalation techniques that the staff and consumer have jointly agreed upon. Data Collection • Every incident of seclusion and restraint needs to be documented and reported in a systematic way so trends can be analyzed and improvements made. • Facilities should maintain documentation for each use of seclusion and restraint (Public Law 106-310, Children’s Health Act of 2000, Parts H and I, sections 591 through 595B of the Public Health Service Act (42 U.S.C. 290jj-290jj 2)). • There is no mandatory, consistent, and publicly accessible system of reporting on seclusion/restraint uses, serious injuries, or deaths. • When a minor is involved, the parent or legal guardian should be notified as soon as possible, but not later than 24 hours after the occurrence. • Among States that have succeeded in lowering their use of seclusion and restraint, mandatory reporting has been a critical tool for improving outcomes. • Such reporting should include consumer deaths and serious injuries, the number of seclusion/restraint incidents, the duration of the use of seclusion, medication errors, falls, staff injuries, and airway obstructions (California Senate Office of Research, 2002). • A performance improvement and monitoring program designed to continuously review, assess, and analyze the facility’s use of seclusion and restraints is vital. Module 6 Sustaining Change Through Consumer and Staff Involvement 29 PRESENTATION “I’m afraid of closed in places and this is in my files. No one took time to look at it or even read it.” Consumer, NAC/SMHA Survey Roadmap to Seclusion and Restraint Free Mental Health Services Goals of External Monitoring • Improve and enhance the quality of life for consumers • Promote effective communication between consumers, staff, and families • External monitors can be used to raise the consciousness of key State and local policy makers, educate the public about the needs and problems of consumers, and encourage the development of effective community-based alternatives. A successful example of this type of program is the Child Watch Visitation Program, an initiative of the Children’s Defense Fund. E-mail: cdfinfo@childrensdefense.org. Phone: (202) 628-8787. Web: www.childrensdefense.org. Module 6 Sustaining Change Through Consumer and Staff Involvement 30 PRESENTATION External Monitoring • Some State hospital systems and some facilities in Delaware, Massachusetts, New Hampshire, New Jersey, and Pennsylvania, have reduced the use of seclusion and restraints by using third party citizen, consumer, and family monitoring groups (www.nami.org). • External monitoring groups can consist of family members, consumer advocates, and citizens. • The goals of external monitoring are to (1) improve and enhance the quality of life for consumers and (2) promote effective communication between consumers, staff, and families. Roadmap to Seclusion and Restraint Free Mental Health Services • Overall appearance and cleanliness of unit • Census, number of staff, number of consumers on the unit • Interaction between consumers and staff • Activities currently available • Number of consumers sleeping or in their rooms • Quality and choices of food • Number of incidents of seclusion and restraint • Supplies/equipment available to consumers • Typically the facility designates a Facility Coordinator to work with the monitoring group. • The Facility Coordinator and the Monitoring Chairperson work together to provide training for monitors and staff. • Training for monitors is extensive and includes the following: Module 6 Sustaining Change Through Consumer and Staff Involvement 31 PRESENTATION What Monitors Are Looking For Roadmap to Seclusion and Restraint Free Mental Health Services • • • • • • • • • Confidentiality What to look for on a site visit How often to visit When to visit How to accurately document How to write a report How to follow up on issues reported How to report emergency issues How to evaluate milieu issues (not clinical issues) • The Facility Coordinator and the Monitoring Chairperson train staff in these same issues. • Training staff and having clear expectations of how the monitoring system works in advance help to avoid misunderstandings and mistrust. • Several key issues ensure an effective monitoring program. • Monitors are allowed to visit at any time—24 hours a day, 7 days a week. • Typically, a staff person accompanies monitors on their rounds so both parties can see exactly what is being monitored. The monitor is allowed to go anywhere in the facility that has been previously agreed upon by all involved parties. • Oftentimes, staff will ask monitors to report certain things that they have not been able to change through their own channels of communication. • In general, monitors are looking at the overall milieu of the unit—not clinical issues. • The monitors file a written report after their visit. A copy of this report goes to the Facility Coordinator, the CEO, and the Director of Nursing. • The Facility Coordinator responds, in writing, to the report within a specified period of time, such as 2 weeks. • A copy of the original report and the response then gets forwarded to the appropriate personnel at the State level, for example, the Office of Consumer Affairs and the Commissioner. • To ensure the monitoring system is working properly, a meeting between key facility personnel and monitors is held periodically. Module 6 Sustaining Change Through Consumer and Staff Involvement 32 PRESENTATION Monitors are typically trained in the following areas: Roadmap to Seclusion and Restraint Free Mental Health Services “Cowardice asks the question – is it safe? Expediency asks the question – is it politic? Vanity asks the question – is it popular? But conscience asks the question – is it right? And there comes a time when one must take a position that is neither safe, nor politic, nor popular, but one must take it BECAUSE it is right.” Dr. Martin Luther King, Jr. • Seclusion and restraint is no longer “right.” • Seclusion and restraint do not change behavior. • Seclusion and restraint do not help people with serious mental illnesses better manage the thoughts and emotions that can trigger behaviors that can injure them or others. • Seclusion and restraint can retraumatize people who have already had far too much trauma in their lives. • Seclusion and restraint is traumatizing to staff. Module 6 Sustaining Change Through Consumer and Staff Involvement 33 PRESENTATION Role of the Champion • The role of the champion is a difficult and sometimes lonely one. If someone chooses to accept this role, the rewards are many. • Change is up to the individual. • No one can make someone else change. • Shared vision is rooted in personal vision. Real vision comes from within. • There are many roles for systems change agents. • Dr. Martin Luther King eloquently outlined the role of the champion in the following quote: Roadmap to Seclusion and Restraint Free Mental Health Services Give participants time to respond to one or two questions from the Journal section and at least one question from each of the Personal Take Action Challenges and the Workplace Take Action Challenges for Modules 5 and 6. They will use these Take Action Challenges extensively on the last day of the training. Module 6 Sustaining Change Through Consumer and Staff Involvement 34 PRESENTATION JOURNAL/TAKE ACTION CHALLENGE Roadmap to Seclusion and Restraint Free Mental Health Services Journal Topics Pick one or two questions and respond in writing. Your responses are confidential. • Which consumer-driven supports would you like to learn more about and why? • Why do you think consumers feel it is important to have a place that is not run by mental health professionals? • What ideas do you have about ways to prevent emergency situations that might lead to seclusion and restraint? • What are your communication strengths and weaknesses? What could you do to improve on your weaknesses? • What language do you hear at work that might be hurtful to consumers? • Write about your own ideal “comfort room.” What kinds of things make you feel more comfortable (e.g., music, soft lighting, taking a bubble bath, going for a walk, sitting outside, meditating, essential oils, being held, watching your favorite movie, reading a book)? • Which of the ideas from your own personal “comfort room” could be incorporated into your workplace? • What do you personally need to do to take care of yourself after an incident of seclusion or restraint? How can you make sure this happens? What do you find helpful about the debriefing process? What do you dislike about the debriefing process? What do you see as the administration's role in the debriefing process? How do you think data collection about seclusion and restraints should be gathered and who should have access to this information? Personal Take Action Challenges Pick one topic and develop a plan. You will use this plan on the last day of training. • Create a wellness plan for your own mental health based on the WRAP outline. Include the following: What are you like when you feel your best? How much of your time is spent feeling your best? What changes in your life would you have to consider accomplishing to maintain your wellness plan every day? Name at least three things you need to do on a daily basis to keep yourself healthy. List at least five things that help you when you are feeling stressed. • Find a place in your personal life that could improve from using the information from Communication Strategies, Comfort Rooms, or Alternative Dispute Resolution/Mediation. Make a list of two things you can personally commit to in your daily life to move forward in one of these areas. Page 1 of 2 Module 6 Sustaining Change Through Consumer and Staff Involvement 35 HANDOUT JOURNAL TOPICS AND TAKE ACTION CHALLENGES FOR MODULES 5 & 6 Roadmap to Seclusion and Restraint Free Mental Health Services Journal Topics/Take Action Challenges (continued) Workplace Take Action Challenges Pick one topic and develop a plan. You will use this plan on the last day of training. • Look up consumer-driven supports on the Internet and make a list of Web sites that would be helpful for staff and consumers to know about. • Find one area in your work setting where you could implement the strategies from Communication Strategies, Comfort Rooms, or Alternative Dispute Resolution/Mediation. Make a list of two things that you can personally commit to every day at work to move your workplace forward in one of these areas. Make a detailed plan of how you will implement these changes. • Do you have access to the information you need in the treatment plan? If not, how could this information be made more readily available to you? • How does a seclusion/restraint incident affect the treatment milieu? What could be done to help the other residents and staff on the unit cope with an incident of seclusion/ restraint? • How are family members and/or friends involved in treatment planning and debriefings of seclusion and restraints? How would you like to see them involved? • What do you think is the best way to balance the rights of people diagnosed with a mental illness with the rights of the staff? What would need to change if these are out of balance? How could you make that change happen? Page 2 of 2 Module 6 Sustaining Change Through Consumer and Staff Involvement 36 HANDOUT • Do you have access to the information you need in the treatment plan? If not, how could this information be made more readily available to you? How does a seclusion/restraint incident affect the treatment milieu? What could be done to help the other residents on the unit cope with a seclusion/restraint incident? Roadmap to Seclusion and Restraint Free Mental Health Services PROTECTION AND ADVOCACY OFFICES State Protection and Advocacy Agencies for Persons with Developmental Disabilities and Mental Illness, and the Client Assistance Program ALABAMA ALASKA CAP Jerry Norsworthy, CAP Director Division of Rehabilitation Services and Children’s Rehabilitation Services 2125 East South Boulevard Montgomery, AL 36116 Phone: 1-800-228-3231 Voice/TDD (in-State only) 1-800-441-7607 (out-of-State) Fax: 334-288-1104 E-mail: jnorsworthy@sacap.org Web site: www.sacap.org CAP Pam Stratton, CAP Director ASIST, Inc. 2900 Boniface Parkway, #100 Anchorage, AK 99504-3195 Phone: 907-333-2211; 1-800-478-0047 Fax: 907-333-1186 E-mail: akcap@alaska.com PADD/PAIMI/PAIR/PABSS/TBI/PAVA Ellen Gillespie, Interim Director Alabama Disabilities Advocacy Program The University of Alabama Box 870395 Tuscaloosa, AL 35487-0395 Phone: 205-348-4928; 1-800-826-1675 (in-State only) TDD: 205-348-9484 Fax: 205-348-3909 E-mail: adap@adap.ua.edu egillespie@adap.ua.edu Web site: www.adap.net PADD/PAIMI/PAIR/PABSS/TBI/PAVA Dave Fleurant, Executive Director Disability Law Center of Alaska 3330 Arctic Boulevard, Suite 103 Anchorage, AK 99503 Phone: 907-565-1002 voice/TDD; 1-800-478-1234 (in-State only) Fax: 907-565-1000 E-mail: dfleurant@dlcak.org Web site: www.dlcak.org AMERICAN SAMOA CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Marie Ma’o, Executive Director Client Assistance Program and Protection & Advocacy P. O. Box 3937 Pago Pago, American Samoa 96799 Phone: 011-684-633-2441 Fax: 011-684-633-7286 E-mail: marie@samoatelco.com Page 1 of 14 Module 6 Sustaining Change Through Consumer and Staff Involvement 37 HANDOUT For more information please visit www.napas.org. Roadmap to Seclusion and Restraint Free Mental Health Services Protection and Advocacy Offices (continued) CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Leslie Cohen, Executive Director Arizona Center for Disability Law 100 North Stone Avenue, Suite 305 Tucson, AZ 85701 Phone: 520-327-9547 voice/TTY; 1-800-922-1447 voice/TTY (nationwide) Fax: 520-884-0992 E-mail: lcohen@acdl.com Web site: www.acdl.com PADD/PAIMI/PAIR/PABSS/TBI/PAVA Catherine Blakemore, Executive Director Protection & Advocacy, Inc. 100 Howe Avenue, Suite 185N Sacramento, CA 95825 Phone: 916-488-9955 Admin. Office; 916-488-9950 Legal Office 1-800-776-5746 (nationwide) Fax: 916-488-2635 or 9962 E-mail: legalmail@pai-ca.org catherine.blakemore@pai-ca.org Web site: www.pai-ca.org COLORADO ARKANSAS CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Nan Ellen East, Executive Director Disability Rights Center 1100 North University Ave., Suite 201 Little Rock, AR 72207 Phone: 501-296-1775 voice/TTD; 1-800-482-1174 voice/TTD (nationwide) Fax: 501-296-1779 E-mail: panda@arkdisabilityrights.org nanelleneast@arkdisabilityrights.org Web site: www.arkdisabilityrights.org CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Mary Anne Harvey, Executive Director The Legal Center 455 Sherman Street, Suite 130 Denver, CO 80203 Phone: 303-722-0300 voice/TDD; 1-800-288-1376 (nationwide) Fax: 303-722-0720 E-mail: tlcmail@thelegalcenter.org maharvey@thelegalcenter.org Web site www.thelegalcenter.org CONNECTICUT CALIFORNIA CAP Sheila Conlon-Mentkowski, Chief Client Assistance Program Department of Rehabilitation 2000 Evergreen Street Sacramento, CA 95815 Phone: 916-263-7372; 1-800-952-5544 TTY: 916-263-7465; 1-866-712-1085 Fax: 916-263-7464 E-mail: smentkow@dor.ca.gov Web site: www.rehab.cahwnet.gov CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Jim McGaughey, Executive Director Office of P&A for Persons with Disabilities 60B Weston Street Hartford, CT 06120-1551 Phone: 860-297-4300; 1-800-842-7303 (inState only) TDD: 860-566-2102 Fax: 860-566-8714 E-mail: james.mcgaughey@po.state.ct.us Web site: www.state.ct.us/opapd/ Page 2 of 14 Module 6 Sustaining Change Through Consumer and Staff Involvement 38 HANDOUT ARIZONA Roadmap to Seclusion and Restraint Free Mental Health Services Protection and Advocacy Offices (continued) FLORIDA CAP Melissa H. Shahan, CAP Director Client Assistance Program United Cerebral Palsy, Inc. 254 East Camden-Wyoming Avenue Camden, DE 19934 Phone: 302-698-9336; 1-800-640-9336 Fax: 302-698-9338 E-mail: capucp@magpage.com CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Hubert A. Grissom, Interim Executive Director Advocacy Center for Persons with Disabilities The Times Building, Suite 513 1000 N. Ashley Drive Tampa, FL 33602 Phone: 813-233-2920; 1-866-875-1794 TDD: 1-866-875-1837 Fax: 813-233-2917 E-mail: info@advocacycenter.org, h.grissom@advocacycenter.org Web site: www.advocacycenter.org PADD/PAIMI/PAIR/PABSS/ TBI/TBI/PAVA James McGiffin, Executive Director / Brian Hartman, Administrator Community Legal Aid Society, Inc. Community Services Building, Suite 801 100 W. 10th Street Wilmington, DE 19801 Phone: 302-575-0660 voice/TDD Fax: 302-575-0840 E-mail: bhartman@declasi.org DISTRICT OF COLUMBIA CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Jane Brown, Executive Director University Legal Services 220 I Street, NE, Suite 130 Washington, DC 20002 Phone: 202-547-0198 Fax: 202-547-2083 E-mail: jbrown@uls-dc.com Web site: www.dcpanda.org GEORGIA CAP * Charles L. Martin, CAP Director Georgia Client Assistance Program 123 N. McDonough Decatur, GA 30030 Phone: 404-373-3116 Fax: 404-373-4110 E-mail: GaCAPDirector@theOmbudsman.com Web site: www.theOmbudsman.com PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Ruby Moore, Executive Director Georgia Advocacy Office, Inc. One Decatur Town Center 150 E. Ponce de Leon Avenue, Suite 430 Decatur, GA 30030 Phone: 404-885-1234 voice/TDD; 1-800-537-2329 (nationwide) Fax: 404-378-0031 E-mail: info@thegao.org rubymoore@thegao.org Web site: www.thegao.org Page 3 of 14 Module 6 Sustaining Change Through Consumer and Staff Involvement 39 HANDOUT DELAWARE Roadmap to Seclusion and Restraint Free Mental Health Services Protection and Advocacy Offices (continued) IDAHO CAP Edmund Cruz, Executive Director Parent-Agencies Network, CAP J. Madarang Dental Building 2238 Route 16, Suite 1-B P.O. Box 23474 GMF, Guam 96921 Phone: 1-671-637-4227 Fax: 1-671-637-4211 E-mail: capguam@ite.net CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Jim Baugh, Executive Director Co-Ad, Inc. 4477 Emerald Street, Suite B-100 Boise, ID 83706-2066 Phone: 208-336-5353 voice/TDD; 1-866-262-3462 (nationwide) Fax: 208-336-5396 E-mail: coadinc@cableone.net jbaugh@cableone.net Web site: users.moscow.com/co-ad PADD/PAIMI/PAIR/PABSS/TBI/PAVA Daniel Somerfleck, Executive Director Guam Legal Services 113 Bradley Place Hagatna, Guam 96910 Phone: 1-671-477-9811 Fax: 1-671-477-1320 E-mail: glsc@netpci.com HAWAII CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Gary Smith, Executive Director Hawaii Disability Rights Center 900 Fort Street Mall, Suite 1040 Honolulu, HI 96813 Phone: 808-949-2922 voice/TDD Fax: 808-949-2928 E-mail: info@hawaiidisabilityrights.org gary@hawaiidisabilityrights.org Web site: www.hawaiidisabilityrights.org ILLINOIS CAP * Kathy Meadows, CAP Director Illinois Client Assistance Program 100 N. First Street, 1st Floor Springfield, IL 62702 Phone: 217-782-5374 Fax: 217-524-1790 E-mail: DHSHRLOL@dsh.state.il PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Zena Naiditch, Executive Director Equip for Equality, Inc. 20 N. Michigan Avenue, Suite 300 Chicago, IL 60602 Phone: 312-341-0022; 1-800-537-2632 (nationwide) TTY: 1-800-610-2779 Fax: 312-341-0295 E-mail: contactus@equipforequality.org Web site: www.equipforequality.org Page 4 of 14 Module 6 Sustaining Change Through Consumer and Staff Involvement 40 HANDOUT GUAM Roadmap to Seclusion and Restraint Free Mental Health Services Protection and Advocacy Offices (continued) KANSAS CAP/PADD/PAIMI/PAIR/PABSS/TBI/ PAVA Tom Gallagher, Executive Director Indiana Protection and Advocacy Services 4701 N. Keystone Avenue, Suite 222 Indianapolis, IN 46204 Phone: 317-722-5555 voice/TDD; 1-800-622-4845 (nationwide) Fax: 317-722-5564 E-mail: tgallagher@ipas.state.in.us Web site: www.IN.gov/ipas CAP Sharon Kearse, CAP Director Client Assistance Program 3640 SW Topeka Boulevard, Suite 150 Topeka, KS 66611 Phone: 785-266-8193; 1-800-432-2326 Fax: 785-266-8574 E-mail: slzk@srskansas.org Web site: www.ink.org/public/srs/CAP PADD/PAIMI/PAIR/PABSS/TBI/PAVA Rocky Nichols, Executive Director Kansas Advocacy & Protective Services 3745 SW Wanamaker Road Topeka, KS 66610 Phone: 785-273-9661 Fax: 785-273-9414 E-mail: rocky@ksadv.org IOWA CAP Harlietta Helland, CAP Director Client Assistance Program Division on Persons with Disabilities Lucas State Office Building Des Moines, IA 50310 Phone: 515-281-3957; 1-800-652-4298 Fax: 515-242-6119 E-mail: harlietta.helland@iowa.gov KENTUCKY PADD/PAIMI/PAIR/PABSS/TBI/PAVA Sylvia Piper, Executive Director Iowa P&A Services, Inc. 950 Office Park Road, Suite #221 West Des Moines, IA 50265 Phone: 515-278-2502; 1-800-779-2502 (nationwide) TTY: 515-278-0571; 1-866-483-3342 Fax: 515-278-0539 E-mail: info@ipna.org spiper@ipna.org Web site: www.ipna.org CAP Gerry Gordon-Brown, CAP Director Client Assistance Program 209 St. Clair, 5th Floor Frankfort, KY 40601 Phone: 502-564-8035; 1-800-633-6283 Fax: 502-564-2951 E-mail: VickiL.Staggs@ky.gov Web site: kycap.ky.gov PADD/PAIMI/PAIR/PABSS/TBI/PAVA Maureen Fitzgerald, Executive Director Kentucky Protection and Advocacy 100 Fair Oaks Lane, 3rd Floor Frankfort, KY 40601 Phone: 502-564-2967; 1-800-372-2988 TDD (nationwide) Fax: 502-564-0848 E-mail: Maureen.Fitzgerald@ky.gov Web site: www.kypa.net Page 5 of 14 Module 6 Sustaining Change Through Consumer and Staff Involvement 41 HANDOUT INDIANA Roadmap to Seclusion and Restraint Free Mental Health Services Protection and Advocacy Offices (continued) MARYLAND CAP/PADD/PAIMI/PAIR/PABSS/TBI/ PAVA Lois Simpson, Executive Director Advocacy Center 225 Baronne Street, Suite 2112 New Orleans, LA 70112-2112 Phone: 504-522-2337 Voice/TDD; 1-800-960-7705 (nationwide) Fax: 504-522-5507 E-mail: lsimpson@advocacyla.org Web site: www.advocacyla.org CAP Beth Lash, CAP Director Client Assistance Program Maryland State Department of Education Division of Rehabilitation Services/MD Rehabilitation Center 2301 Argonne Drive Baltimore, MD 21218-1696 Phone: 410-554-9359; 1-800-638-6243 Fax: 410-554-9362 E-mail: cap@dors.state.md.us MAINE PADD/PAIMI/PAIR/PABSS/TBI/PAVA Gary Weston, Executive Director Maryland Disability Law Center The Walbert Building, Suite 400 1800 N. Charles Street Baltimore, MD 21201 Phone: 410-727-6352; 1-800-233-7201 (in-State only) TDD: 410-727-6387 Fax: 410-727-6389; 410-234-2711 E-mail: garyw@mdlcbalto.org Web site: www.mdlcbalto.org CAP* Steve Beam, Program Director CARES, Inc. 47 Water Street, Suite 104 Hallowell, ME 04347 Phone: 207-622-7055; 1-800-773-7055 Fax: 207-621-1869 E-mail: capsite@aol.com Web site: www.caresinc.org PADD/PAIMI/PAIR/PABSS/TBI/PAVA Kim Moody, Executive Director Disability Rights Center 24 Stone Street P.O. Box 2007 Augusta, ME 04338 Phone: 207-626-2774; 1-800-452-1948 TDD (in-State only) Fax: 207-621-1419 E-mail: advocate@drcme.org kamoody@drcme.org Web site: www.drcme.org MASSACHUSETTS CAP * Barbara Lybarger, CAP Director Massachusetts Office on Disability Client Assistance Program One Ashburton Place, Room 1305 Boston, MA 02108 Phone: 617-727-7440 Fax: 617-727-0965 E-mail: Barbara.Lybarger@modi.state.ma.us Web site: www.state.ma.us/mod/MSCAPBRO. html Page 6 of 14 Module 6 Sustaining Change Through Consumer and Staff Involvement 42 HANDOUT LOUISIANA Roadmap to Seclusion and Restraint Free Mental Health Services Protection and Advocacy Offices (continued) MICHIGAN CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Elmer Cerano, Executive Director Michigan P&A Services 4095 Legacy Parkway, Suite 500 Lansing, MI 48911-4263 Phone: 517-487-1755 voice/TDD 1-800-288-5923 (in-State only) CAP only: 1-800-292-5896 Fax: 517-487-0827 E-mail: ecerano@mpas.org Web site: www.mpas.org MINNESOTA CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Brenda Jursik, Administrator Minnesota Disability Law Center 430 First Avenue North, Suite 300 Minneapolis, MN 55401-1780 Phone: 612-332-1441; 1-800-292-4150 (in-State only) Fax: 612-334-5755 E-mail: bjursik@midmnlegal.org Web site: www.mndlc.org MISSISSIPPI CAP Presley Posey, CAP Director Client Assistance Program Easter Seal Society 3226 N. State Street Jackson, MS 39216 Phone: 601-982-7051 Fax: 601-982-1951 E-mail: pposey8803@aol.com PADD/PAIMI/PAIR/PABSS/TBI/PAVA Rebecca Floyd, Executive Director Mississippi P&A System for DD, Inc. 5305 Executive Place, Suite A Jackson, MS 39206 Phone: 601-981-8207 Voice/TDD; 1-800-772-4057 Fax: 601-981-8313 E-mail: info@mspas.com Web site: www.mspas.com-ms MISSOURI CAP/PADD/PAIMI/PAIR/PABSS/TBI/ PAVA Shawn de Loyola, Executive Director Missouri P&A Services 925 S. Country Club Drive, Unit B-1 Jefferson City, MO 65109 Phone: 573-893-3333; 1-800-392-8667 (nationwide) MO Relay TDD: 1-800-735-2966 Fax: 573-893-4231 E-mail: mopasjc@earthlink.net Web site: www.moadvocacy.org Page 7 of 14 Module 6 Sustaining Change Through Consumer and Staff Involvement 43 HANDOUT PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Christine Griffin, Executive Director Disability Law Center, Inc. 11 Beacon Street, Suite 925 Boston, MA 02108 Phone: 617-723-8455; 1-800-872-9992 TTY: 617-227-9464; 1-800-381-0577 Fax: 617-723-9125 E-mail: cgriffin@dlc-ma.org Web site: www.dlc-ma.org/ Roadmap to Seclusion and Restraint Free Mental Health Services Protection and Advocacy Offices (continued) CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Bernadette Franks-Ongoy, Executive Director Montana Advocacy Program 400 North Park, 2nd Floor P.O. Box 1681 Helena, MT 59624 Phone: 406-449-2344 voice/TDD; 1-800-245-4743 (nationwide) Fax: 406-449-2418 E-mail: bernie@mtadv.org Web site: www.mtadv.org NATIVE AMERICAN PADD/PAIMI/PAIR/PABSS/TBI Therese Yanan, Executive Director Native American Protection & Advocacy Project 3535 East 30th Street, Suite 201 Farmington, NM 87402 Phone: 505-566-5880; 1-800-862-7271 (intakes & clients only) Fax: 505-566-5889 E-mail: tyanan@dnalegalservices.org NEBRASKA CAP Victoria Rasmussen, CAP Director Client Assistance Program P.O. Box 94987 Lincoln, NE 68509 Phone: 402-471-3656; 1-800-742-7594 Fax: 402-471-0117 E-mail: victoria@cap.state.ne.us PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Timothy Shaw, Executive Director Nebraska Advocacy Services, Inc. 134 South 13th Street, Suite 600 Lincoln, NE 68508 Phone: 402-474-3183 voice/TDD; 1-800-422-6691 Fax: 402-474-3274 E-mail: nas@nas-pa.org NEVADA CAP * Margaret Moroun, CAP Director Client Assistance Program 1820 E. Sahara Avenue, Suite 109 Las Vegas, NV 89104 Phone: 702-486-6688 Fax: 702-486-6691 E-mail: mjmoroun@nvdetr.org Web site: members.delphi.com/nvcap/index. html PADD/PAIMI/PAIR/PABSS/TBI/PAVA Jack Mayes, Executive Director Nevada Advocacy & Law Center, Inc. 6039 Eldora Avenue, Suite C-3 Las Vegas, NV 89146 Phone: 702-257-8150; 1-888-349-3843 (nationwide) TTY: 702-257-8160 Fax: 702-257-8170 E-mail: ndalc@earthlink.net for Las Vegas Office JMayes9524@aol.com reno@ndalc.org for Reno office Web site: www.ndalc.org Page 8 of 14 Module 6 Sustaining Change Through Consumer and Staff Involvement 44 HANDOUT MONTANA Roadmap to Seclusion and Restraint Free Mental Health Services Protection and Advocacy Offices (continued) NEW MEXICO CAP* Bill Hagy, Ombudsman Client Assistance Program Governor’s Commission on Disability 57 Regional Drive Concord, NH 03301-9686 Phone: 603-271-2773 Fax: 603-271-2837 E-mail: bhagy@gov.state.nh.us Web site: www.state.nh.us/disability/ caphomepage.html CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA James Jackson, Executive Director Protection & Advocacy, Inc 1720 Louisiana Boulevard, NE, Suite 204 Albuquerque, NM 87110 Phone: 505-256-3100 voice/TDD; 1-800-432-4682 (in-State only) Fax: 505-256-3184 E-mail: info@nmpanda.org Web site: www.nmpanda.org PADD/PAIMI/PAIR/PABSS/TBI/PAVA Richard Cohen, Executive Director Disabilities Rights Center 18 Low Avenue Concord, NH 03302-4971 Phone: 603-228-0432 TDD: 1-800-834-1721 Fax: 603-225-2077 E-mail: advocacy@drcnh.org Richard C@drcnh.org Web site: www.drcnh.org NEW YORK NEW JERSEY CAP/PADD/PAIMI/PAIR/PABSS/TBI/ PAVA Sarah Wiggins-Mitchell, Executive Director New Jersey P&A, Inc. 210 S. Broad Street, 3rd Floor Trenton, NJ 08608 Phone: 609-292-9742; 1-800-922-7233 (in-State only) TTY: 609-633-7106 Fax: 609-777-0187 E-mail: advocate@njpanda.org smitchell@njpanda.org Web site: www.njpanda.org CAP/PADD/PAIMI/PAIR/PABSS/TBI/ PAVA Gary O’Brien, Executive Director New York State Commission on Quality of Care for the Mentally Disabled 401 State Street Schenectady, NY 12305-2397 Phone: 518-388-2892; 1-800-624-4143 TDD (nationwide) Fax: 518-388-2890 E-mail: marcelc@cqc.state.ny.us garyo@cqc.state.ny.us Web site: www.cqc.state.ny.us NORTH CAROLINA CAP Kathy Brack, CAP Director North Carolina Department of Health and Human Services Client Assistance Program 2806 Mail Service Center Raleigh, NC 27699-2806 Phone: 919-855-3600; 1-800-215-7227 Fax: 919-715-2456 E-mail: Kathy.Brack@ncmail.net Page 9 of 14 Module 6 Sustaining Change Through Consumer and Staff Involvement 45 HANDOUT NEW HAMPSHIRE Roadmap to Seclusion and Restraint Free Mental Health Services Protection and Advocacy Offices (continued) N. MARIANAS ISLANDS CAP/PADD/PAIMI/PAIR/PABSS/TBI Lydia Fujihira Barcinas, Executive Director Northern Marianas Protection and Advocacy System, Inc. P.O. Box 503529 Saipan, MP 96950-3529 Phone: 1-670-235-7274/3 Fax: 1-670-235-7275 E-mail: nmpasi@vzpacifica.net Web site: www.NMPASI.com OHIO NORTH DAKOTA CAP Dennis Lyon, CAP Director North Dakota Client Assistance Program 600 South 2nd Street, Suite 1B Bismarck, ND 58504-4038 Phone: 701-328-8947; 1-800-207-6122 CAP only Fax: 701-328-8969 E-mail: CAP@state.nd.us Web site: www.state.nd.us/cap/ PADD/PAIMI/PAIR/PABSS/TBI/PAVA Teresa Larsen, Executive Director North Dakota Protection & Advocacy Project 400 E. Broadway, Suite 409 Bismarck, ND 58501 Phone: 701-328-2950; 1-800-472-2670 1-800-642-6694 (24-hour line) (in-State only) TDD: 1-800-366-6888 Fax: 701-328-3934 E-mail: tlarsen@state.nd.us Web site: www.ndpanda.org CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Carolyn Knight, Executive Director Ohio Legal Rights Service 8 E. Long Street, 5th Floor Columbus, OH 43215 Phone: 614-466-7264; 1-800-282-9181 (inState only) TTY: 614-728-2553; 1-800-858-3542 Fax: 614-644-1888 E-mail: CKnight@olrs.state.oh.us Web site: olrs.ohio.gov/ASP/HomePage. asproper OKLAHOMA CAP James Sirmans, CAP Director Client Assistance Program Oklahoma Office of Handicapped Concerns 2401 NW 23rd, Suite 90 Oklahoma City, OK 73107 Phone: 405-521-3756; 1-800-522-8224 Fax: 405-522-6695 E-mail: James.Sirmans@ohc.state.ok.us Web site: www.ohc.state.ok.us Page 10 of 14 Module 6 Sustaining Change Through Consumer and Staff Involvement 46 HANDOUT PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Allison Bowen, Acting Executive Director Governor’s Advocacy Council for Persons with Disabilities 1314 Mail Service Center Raleigh, NC 27699-1314 Phone: 919-733-9250 Voice/TDD; 1-800-821-6922 (in-State only) Fax: 919-733-9173 E-mail: allison.bowen@ncmail.net Web site: www.Gacpd.com Roadmap to Seclusion and Restraint Free Mental Health Services Protection and Advocacy Offices (continued) PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Ilene Shane, Executive Director Pennsylvania P&A, Inc. 1414 N. Cameron Street, Suite C Harrisburg, PA 17103 Phone: 717-236-8110; 1-800-692-7443 (nationwide) TTY: 717-346-0293; 1-877-375-7139 Fax: 717-236-0192 E-mail: ppa@ppainc.org Web site: www.ppainc.org OREGON PUERTO RICO CAP/PADD/PAIMI/PAIR/PABSS/TBI/ PAVA Robert Joondeph, Executive Director Oregon Advocacy Center 620 SW Fifth Avenue, 5th Floor Portland, OR 97204-1428 Phone: 503-243-2081; 1-800-452-1694 (nationwide) TDD: 1-800-556-5351 Fax: 503-243-1738 E-mail: welcome@oradvocacy.org bob@oradvocacy.org Web site: www.oradvocacy.org CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Jose Raul Ocasio, Executive Director Office of the Governor Ombudsman for the Disabled P.O. Box 41309 San Juan, PR 00940-1309 Phone: 787-721-4299; 787-725-2333; 1-800-981-4125 (in-State only) TTY: 787-4014 Fax: 787-721-2455 E-mail: mmorales@oppi.gobierno.pr jrocasio@oppi.gobierno.pr Web site: www.oppi.gobierno.pr PENNSYLVANIA CAP Stephen Pennington, CAP Director Center for Disability Law and Policy 1617 JFK Boulevard, Suite 800 Philadelphia, PA 19103 Phone: 215-557-7112; 1-888-745-2357 Fax: 215-557-7602 E-mail: info@equalemployment.org RHODE ISLAND CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Ray Bandusky, Executive Director Rhode Island Disability Law Center, Inc. 349 Eddy Street Providence, RI 02903 Phone: 401-831-3150; 1-800-733-5332 (in-State only) TDD: 401-831-5335 Fax: 401-274-5568 E-mail: rbandusky@ridlc.org Page 11 of 14 Module 6 Sustaining Change Through Consumer and Staff Involvement 47 HANDOUT PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Kayla Bower, Executive Director Oklahoma Disability Law Center, Inc. 2915 Classen Boulevard, Suite 300 Oklahoma City, OK 73106 Phone: 405-525-7755; 1-800-880-7755 (in-State only) Fax: 405-525-7759 E-mail: odlcokc@flash.net kbower1@flash.net Web site: www.oklahomadisabilitylaw.org Roadmap to Seclusion and Restraint Free Mental Health Services Protection and Advocacy Offices (continued) TENNESSEE CAP Dr. Larry Barker, CAP Director Office of the Governor Division of Ombudsman and Citizen Services 1205 Pendleton Street Columbia, SC 29211 Phone: 803-734-0285; 1-800-868-0040 Fax: 803-734-0546 E-mail: mbutler@govoepp.state.sc.us lbarker@govoepp.state.sc.us Web site: www.govoepp.state.sc.us/cap/ CAP/PADD/PAIMI/PAIR/PABSS/TBI/ PAVA Shirley Shea, Executive Director Tennessee P&A, Inc. P.O. Box 121257 Nashville, TN 37212 Phone: 615-298-1080 voice; 615-298-2471 TTY; 1-800-287-9636 (nationwide) Intake Unit: 901-458-6013; 901-343-4241 TTY; 1-800-342-1660 (nationwide) TTY: 1-888-852-2852 (nationwide) Fax: 615-298-2046 E-mail: gethelp@tpainc.org; shirleys@tpainc. org Web site: www.tpainc.org PADD/PAIMI/PAIR/PABSS/TBI/PAVA Gloria Prevost, Executive Director Protection & Advocacy for People with Disabilities, Inc. 3710 Landmark Drive, Suite 208 Columbia, SC 29204 Phone: 803-782-0639 voice/TDD; 1-866-275-7273 (in-State only) Fax: 803-790-1946 E-mail: info@protectionandadvocacy-sc.org prevost@protectionandadvocacy-sc.org Web site: www.protectionandadvocacy-sc.org SOUTH DAKOTA CAP/PADD/PAIMI/PAIR/PABSS/TBI/ PAVA Robert Kean, Executive Director South Dakota Advocacy Services 221 S. Central Avenue Pierre, SD 57501 Phone: 605-224-8294 voice/TDD; 1-800-658-4782 (in-State only) Fax: 605-224-5125 E-mail: keanr@sdadvocacy.com Web site: www.sdadvocacy.com TEXAS CAP/PADD/PAIMI/PAIR/PABSS/TBI/ PAVA Mary S. Faithfull, Executive Director Advocacy, Inc. 7800 Shoal Creek Boulevard, Suite 171-E Austin, TX 78757 Phone: 512-454-4816 voice/TDD; Intake 1-800-315-3876 1-800-252-9108 (nationwide) Fax: 512-323-0902 E-mail: infoai@advocacyinc.org mfaithfull@advocacyinc.org Web site: www.advocacyinc.org Page 12 of 14 Module 6 Sustaining Change Through Consumer and Staff Involvement 48 HANDOUT SOUTH CAROLINA Roadmap to Seclusion and Restraint Free Mental Health Services Protection and Advocacy Offices (continued) VIRGIN ISLANDS CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Fraser Nelson, Executive Director Disability Law Center The Community Legal Center 205 North 400 West Salt Lake City, UT 84103 Phone: 801-363-1347; 1-800-662-9080 (nationwide) TTY: 801-924-3185 Fax: 801-363-1437 E-mail: fnelson@disabilitylawcenter.org Web site: www.disabilitylawcenter.org CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Amelia Headley LaMont, Executive Director Virgin Islands Advocacy, Inc. 63 Estate Cane Carlton Frederiksted, VI 00840 Phone: 340-772-1200 TDD: 340-772-4641 Fax: 340-772-0609 E-mail: info@viadvocacy.org alamont@justice.com Web site: www.viadvocacy.org VIRGINIA VERMONT CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA V. Colleen Miller, Executive Director Virginia Office for Protection & Advocacy 1910 Byrd Avenue, Suite 5 Richmond, VA 23230 Phone: 804-225-2042 Voice/TDD; 1-800-552-3962 (in southern VA only) Fax: 804-662-7057 E-mail: colleen.miller@vopa.virginia.gov Web site: www.vopa.state.va.us CAP Nancy Breiden, CAP Director Vermont Disability Law Project 57 N. Main Street, Suite 2 Rutland, VT 05701 Phone: 802-775-0021; 1-800-769-7459 Fax: 802-775-0022 E-mail: nbreiden@vtlegalaid.org PADD/PAIMI/PAIR/PABSS/TBI/PAVA Edward Paquin, Executive Director Vermont Protection & Advocacy, Inc. 141 Main Street, Suite 7 Montpelier, VT 05602 Phone: 802-229-1355; 1-800-834-7890 (nationwide) Fax: 802-229-1359 E-mail: info@vtpa.org epaquin@vtpa.org Web site: www.vtpa.org WASHINGTON CAP Jerry Johnsen, CAP Director Client Assistance Program 2531 Rainier Avenue South Seattle, WA 98144 Phone: 206-721-5999; 1-800-544-2121 Fax: 206-721-4537 E-mail: capseattle@att.net Page 13 of 14 Module 6 Sustaining Change Through Consumer and Staff Involvement 49 HANDOUT UTAH Roadmap to Seclusion and Restraint Free Mental Health Services Protection and Advocacy Offices (continued) PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Lynn Breedlove, Executive Director Wisconsin Coalition for Advocacy 16 N. Carroll Street, Suite 400 Madison, WI 53703 Phone: 608-267-0214; 1-800-928-8778 TTY Fax: 608-267-0368 E-mail (Madison): wcamsn@w-c-a.org lynnb@w-c-a.org (Milwaukee): wcamke@w-c-a.org Web site: www.w-c-a.org WEST VIRGINIA WYOMING CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Edward W. Rugeley, Jr., Interim Executive Director West Virginia Advocates, Inc. Litton Building, 4th Floor 1207 Quarrier Street Charleston, WV 25301 Phone: 304-346-0847 voice/TDD; 1-800-950-5250 (nationwide) Fax: 304-346-0867 E-mail: wvainfo@wvadvocates.org erugeley@wvadvocates.org Web site: www.wvadvocates.org CAP/PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Jeanne Thobro, Executive Director Wyoming Protection & Advocacy System, Inc. 320 West 25th Street, 2nd Floor Cheyenne, WY 82001 Phone: 307-632-3496 1-800-624-7648 (in-State only) Fax: 307-632-3496 E-mail: wypanda@vcn.com Web site: wypanda.vcn.com WISCONSIN CAP Linda Vegoe, CAP Director Department of Agriculture Trade and Consumer Protection 2811 Agriculture Drive P.O. Box 8911 Madison, WI 53708-8911 Phone: 608-224-5070; 1-800-392-1290 Fax: 608-224-5069 E-mail: linda.vegoe@datcp.state.wi.us Page 14 of 14 Module 6 Sustaining Change Through Consumer and Staff Involvement 50 HANDOUT PADD/PAIMI/PAIR/PABSS/ TBI/PAVA Mark Stroh, Executive Director Washington P&A System 315 Fifth Avenue South, Suite 850 Seattle, WA 98104 Phone: 206-324-1521; 1-800-562-2702 (nationwide) TTY: 206-957-0728; 1-800-905-0209 Fax: 206-957-0729 E-mail: wpas@wpas-rights.org Mstroh@wpas-rights.org Web site: www.wpas-rights.org Roadmap to Seclusion and Restraint Free Mental Health Services NTAC Summer/Fall 2002 Networks Newsletter by William Pflueger* It is difficult to write about my experiences with seclusion and restraint. Someone who has experienced it wouldn’t want to read any further, and for someone who hasn’t, how can it be explained? A comparison that comes to mind is describing the practice of whipping as a control and conditioning mechanism for slaves to an audience from the 1850s. Depending on the sympathies of the reader, possible reactions could be, “How ghastly! How wrong! This practice must be ended!” or, “Understandably upsetting to the squeamish, but a necessary, albeit unpleasant treatment to maintain control and safety for all involved.” Fortunately for me, it has been a number of years since I was locked up and tied down. It always seemed like overkill. Here I am in a locked facility and I get put in a locked room and then strapped and locked to a bed. I was expecting that next a canvas bag would be put over me and I would be dropped into a river. I can’t bring myself to describe the moment-by-moment struggles and shear gut-wrenching terror of being put into five-point restraint. Tears well up in my eyes and I feel a dark hole opening below me. I don’t feel comfortable wearing watches any more and for a long time belts were out of the question. Just the smell of leather and jingle of the hardware were enough to trigger memories of those horrible times. The faces of the people who put me in restraints are stamped in my mind as indelibly as members of my family. The whole experience made me feel ashamed and that my soul had been dishonored. I sense that some of the shame rubbed off on the people who were ordered to do that to me. The terror of confinement, the pain of restraint, and the wound to my soul made me want to stay as far away from the mental health system as possible. It didn’t matter that it might offer me something helpful; I didn’t want any of it if that horrible experience was going to be a part of the package. So then where does one go with the feelings that are swirling around in the aftermath of that experience? The trauma of the treatment is not something that can be discussed with the person who ordered it. How can a doctor acknowledge that the first tenet of the Hippocratic Oath has been violated at his or her own hand? The standard professional response is, “unfortunate but necessary. Let’s not dwell on the past.” Page 1 of 2 Module 6 Sustaining Change Through Consumer and Staff Involvement 51 HANDOUT Perspectives From the Field Consumer View: Restraint Is Not Therapeutic Roadmap to Seclusion and Restraint Free Mental Health Services Perspectives From the Field (continued) If we could all just recognize and acknowledge that the ordeal of seclusion and restraint is harmful, it would be a wonderful beginning for creating a mental health system that is truly about recovery, wellness, and helping the whole person. *Mr. Pflueger is the Treasurer of the Statewide Mental Health Consumer/Survivor Network of Minnesota. Page 2 of 2 Module 6 Sustaining Change Through Consumer and Staff Involvement 52 HANDOUT The techniques normally don’t leave any permanent physical scars, but if the practitioners could see the psychological damage done they would know that the treatment causes more harm than good. It is like amputating someone’s leg to deal with a broken ankle. The mental condition that you leave with shouldn’t be worse than the one you arrived with, but when a human being is treated like a non-human, that insult and injury is added on to the diagnosis that you already have. However it is not acknowledged by anyone but the person who experienced it. Roadmap to Seclusion and Restraint Free Mental Health Services Debriefing Survey for Consumers 1. I was acting in a manner that could have been dangerous to myself or others. 2. Someone tried to calm me down or resolve my problem. 3. The reasons why I was restrained or secluded were explained to me. 4. Staff said my behavior was inappropriate, however, my behavior was not dangerous. 5. I was given medication. While in seclusion or restraint… 1. I was allowed to take a drink of water and/or eat at mealtime. 2. I was released every two hours and given an opportunity to move about and exercise. 3. Hospital staff checked on me every 30 minutes to see if I was okay. 4. I was examined by a physician. 5. I was allowed to use the bathroom at least every hour. 6. Unnecessary force was used. 7. I was physically injured. 8. I was physically abused. 9. I was sexually abused. 10. I was psychologically abused, ridiculed, or threatened. Module 6 Sustaining Change Through Consumer and Staff Involvement 53 HANDOUT Before staff put me in seclusion or restraint….. Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 6 - REFERENCES Campbell, J. (1997). How consumer/survivors are evaluating the quality of psychiatric care. Evaluation Review, 23(3), 357-363. Copeland. M.E. (2002). Wellness Recovery Action Plan. West Dummerston, VT: Peach Press. Flynn, H. (1996, July). Mental health policy issues related to the use of seclusion and restraint with adult survivors of childhood sexual abuse. Paper presented at the Florida Mental Health Institute, Tampa, FL Goetz, R.R. (2002). Debriefing critical incidents: A basic model. Presentation materials used with permission. Clackamas County Mental Health, Oregon. Harris, D., & Morrison, E., (1995). Managing violence without coercion. Archives of Psychiatric Nursing, 9(2), 203-210. Jennings, A. (1997). Strategic action plan for creating a system of care responsive to the needs of trauma survivors. Augusta: Maine Department of Mental Health, Retardation and Substance Abuse Services. Joint Commission on Accreditation of Healthcare Organizations. (1996, January/February). Standards for restraint and seclusion. Joint Commission Perspectives, RS1-RS8. Kiesler, C.A. (1992). U.S. mental health policy: Doomed to fail. American Psychologist, 47(9), 1077-1082. Martin, K. (1995). Improving staff safety through an aggression management program. Archives of Psychiatric Nursing, 9, 211-215. Mohr, W., Mahon, M., & Noone, M. (1998). A restraint on restraints: The need to reconsider the use of restrictive interventions. Archives of Psychiatric Nursing, 12, 95-106. NAMI. The Citizen’s Mental Health Monitoring Project [Video]. East Longmeadow, MA: Veritech Corporation. National Association of Consumer/Survivor Mental Health Administrators. (2000). In Our Own Voices Survey. An unpublished survey. National Association of Consumer/Survivor Mental Health Administrators. (1999). An unpublished presentation by Darby Penny. National Technical Assistance Center. (1999, Summer) Seclusion and restraint: Debate gains momentum. Networks. National Technical Assistance Center. (2002, Summer/Fall). Violence and coercion in mental health settings: Eliminating the use of seclusion and restraint. Networks (Special Edition). Online at www.nasmhpd.org/general_files/publications/ntac_pubs/networks/SummerFall2002.pdf Page 1 of 2 Module 6 Sustaining Change Through Consumer and Staff Involvement 54 HANDOUT California Senate Office of Research. (2002). Seclusion and restraints: A failure, not a treatment. Online at www.sen.ca.gov/sor/reports/REPORTS_BY_SUBJ/HEALTH/RESTRAINTS.HTP. Roadmap to Seclusion and Restraint Free Mental Health Services Module 6 - References (continued) Penney, D. (1999). Unpublished presentation. Pennsylvania Department of Public Welfare, Office of Mental Health and Substance Abuse Services. (2001). Leading the way toward a seclusion and restraint free environment: Pennsylvania’s success story. Harrisburg, PA: Author Pflueger, W. (2002, Summer/Fall). Perspectives from the field: Consumer view: Restraint is not therapeutic. National Technical Assistance Center Networks Newsletter. Ray, M,, & Myers, K. (1994). Lowering restraint and seclusion use: The leader may make a difference. Quality of Care. Albany, NY: New York State Commission on Quality of Care for the Mentally Disabled. Reith, K.A., & Bennett, C.C. (1998). Restraint-free care. Part 1: Legal and regulatory mandates. Part 2: Creating a restraint-free environment. Nursing Management, 29(5), 36-39. Siegfried, C. (1999). Checking up on juvenile justice facilties: A handbook for child mental health advocates. Alexandria, VA: National Mental Health Association. Online at www.nmha.org/children/justjuv/checkingup.pdf Siegfried, C. (1999). Checking up on juvenile justice facilities: A best practices guide. Alexandria, VA: National Mental Health Association. Online at www.nmha.org/children/justjuv/checkingUpOnJJFacilities.cfm. Steele, E. (1999). Seclusion and restraint practice standards: A review and analysis, 1999. Alexandria, VA: National Mental Health Association, Consumer Supporter Technical Center. University of Illinois at Chicago National Research and Training Center on Psychiatric Disability. (2002) Increasing self-determination through advance crisis management in inpatient and community settings: How to design, implement, and evaluate your own program. Phone: 312-422-8180. Web site: www.psych.uic.edu/mhsrp. Page 2 of 2 Module 6 Sustaining Change Through Consumer and Staff Involvement 55 HANDOUT Palmer, L., Abrams, F., Carter, D., & Schluter, W. (1999). Reducing inappropriate restraint use in Colorado’s long-term care facilities. Journal of Quality Improvement of the Joint Commission on Accreditation of Healthcare Organizations, 25(2), 78-94. Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 7 Review and Action Plan 1 Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 7 Review and Action Plan “Cowardice asks the question – Is it safe? Expediency asks the question – Is it politic? Vanity asks the question – Is it popular? But conscience asks the question – Is it right? And there comes a time when one must take a position that is neither safe, nor politic, nor popular, but one must take it BECAUSE it is right.” —Dr. Martin Luther King, Jr. Learning Objectives Upon completion of this module the participant will be able to: • Identify key concepts from Modules 1–6. • Develop a personal action plan for reducing seclusion and restraint. • Develop a workplace action plan for reducing seclusion and restraint. Module 7 Review and Action Plan 2 Roadmap to Seclusion and Restraint Free Mental Health Services MODULE 7: REVIEW AND ACTION PLAN Background for the Facilitators. . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Presentation (4 hours) . . . . . . . . . . . . . . . . Review . . . . . . . . . . . . . . . . . . . . . . . . . . Personal Action Plan. . . . . . . . . . . . . . . . . Exercise: Personal Action Plan (1 hour) . Workplace Action Plan . . . . . . . . . . . . . . . Exercise: Workplace Action Plan (1 hour) Certificates of Completion . . . . . . . . . . . . . Wrap Up and Evaluation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5 .6 14 15 16 17 18 18 Handouts for Participants . Personal Action Plan. . . . Workplace Action Plan . . Certificate of Completion Evaluation. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 19 21 23 24 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Module 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Review and Action Plan 3 Roadmap to Seclusion and Restraint Free Mental Health Services Overview This is the last module in this curriculum and the final time to work together as a group. Discussion questions are provided to help stimulate conversation. It is important to remind people of the confidential nature of these sessions. Review The precedingt six modules have provided participants with many opportunities to increase their understanding and explore a consumer-directed philosophy. In the first part of this session, you will review highlights from each module. Personal Action Plan Give the participants time to review all of their personal action plans and journal entries from the first six modules and develop an overall action plan for eliminating the use of seclusion and restraint. Workplace Action Plan Give the participants time to come together as a group and develop a strategic plan for the elimination of seclusion and restraint in their facility. The participants will set several goals and devise action plans for achieving these goals. Discussion questions are provided to help you stimulate the conversation. Closure Play the If I Were Brave CD for one final moment of reflection and then present the Certificates of Completion and say goodbyes. As always, please be sure to thank everyone in the group for their active participation. Module 7 Review and Action Plan 4 BACKGROUND BACKGROUND FOR THE FACILITATORS: REVIEW AND ACTION PLAN Roadmap to Seclusion and Restraint Free Mental Health Services Welcome participants, review names, and make sure everyone has a nametag or name tent. It may be helpful to provide a quick review of Module 6: Sustaining Change Through Consumer and Staff Involvement. Set aside a minimum of 2 hours to develop personal and workplace action plans. Begin by going over the learning objectives. Learning Objectives Upon completion of this module the participant will be able to: • Identify key concepts from Modules 1-6 • Develop a personal action plan for reducing seclusion and restraint • Develop a workplace action plan for reducing seclusion and restraint Module 7 Review and Action Plan 5 PRESENTATION PRESENTATION Roadmap to Seclusion and Restraint Free Mental Health Services Overview • This training has covered an enormous amount of material. • You have been given a sample of many different resources that are available to you for eliminating the use of seclusion and restraint. • We hope you have learned a little bit about many things and will pursue further information on your own. • We will do a brief review of each module, highlighting the key points. Module 7 Review and Action Plan 6 PRESENTATION “Cowardice asks the question – is it safe? Expediency asks the question – is it politic? Vanity asks the question – is it popular? But conscience asks the question – is it right? And there comes a time when one must take a position that is neither safe, nor politic, nor popular, but one must take it BECAUSE it is right.” Dr. Martin Luther King, Jr. Roadmap to Seclusion and Restraint Free Mental Health Services “When I participated in my first restraint experience I vomited.” (interview with direct care staff from Minnesota) • The most powerful way of understanding the personal experience of seclusion and restraint is to hear from people who have had this experience. • Consumers and members of the professional mental health community are beginning to realize the importance of establishing and maintaining rapport as an effective means of developing productive communications. • Promising practices indicate that training direct care staff is a key to eliminating the use of seclusion and restraint. • Direct care staff possess the informal power to contribute to system changes that eliminate the use of seclusion and restraint. Module 7 Review and Action Plan 7 PRESENTATION Module 1: The Personal Experience of Seclusion and Restraint Roadmap to Seclusion and Restraint Free Mental Health Services “What helps me (deal with trauma) is professionals who have the ability to take care of themselves, are centered, and not take on what comes out of me – not hurt by what I say – sit, be calm and centered and not personally take on my issues.” Survivor from Maine “Traumatic experiences shake the foundations of our beliefs about safety, and shatter our assumptions of trust.” David Baldwin Module 7 Review and Action Plan 8 PRESENTATION Module 2: Understanding the Impact of Trauma Roadmap to Seclusion and Restraint Free Mental Health Services Module 3: Creating Cultural Change “The hospital’s culture dictates whether, in what circumstances, and how often seclusion and restraint interventions are used.” Ira Burnim, Bazelon Center for Mental Health Law Module 7 Review and Action Plan 9 PRESENTATION • Adult survivors of trauma are disproportionately represented in the mental health system. • Data on children and adolescents suggest even higher percentages of traumatization. • Traditional treatment modalities, including the use of seclusion and restraint, are not always appropriate for trauma survivors and may in fact be retraumatizing. • Accurately diagnosing trauma early on will significantly decrease the use of seclusion and restraint. • Secondary traumatization can occur for consumers who witness coercive techniques and staff who administer it. • It is important for staff to examine their own trauma, recognize their symptoms, recognize triggers, and develop their own plan of self-care. Roadmap to Seclusion and Restraint Free Mental Health Services • Changing the culture of coercion in mental health settings is crucial to eliminating the use of seclusion and restraint. • In 1997, the Pennsylvania Department of Public Welfare instituted an aggressive program to reduce and eliminate seclusion and restraint in its nine State hospitals. • In three years, Pennsylvania had reduced incidents of seclusion and restraint by 74 percent. • All stakeholders must be present at the table. Module 7 Review and Action Plan 10 PRESENTATION “It is not possible to solve a problem with the same consciousness that created it.” Albert Einstein Roadmap to Seclusion and Restraint Free Mental Health Services “…the initiative (Pennsylvania’s) to reduce the use of seclusion and restraint is part of a broader effort to reorient the State mental health system toward a consumer-focused philosophy that emphasizes recovery and independence.” Charles Curie, Administrator, SAMHSA • Original recovery work as a philosophy in mental health emerged from the writings and practices of the consumer movement. • It is important for mental health workers to communicate that recovery is possible and to verbalize hope. • Resiliency is that characteristic that gives someone the ability to bounce back after adversity. • Often people who have overcome adversities can pinpoint a single person who made a difference to them. It is a person who took the time to listen, who believed in them, and offered hope. Module 7 Review and Action Plan 11 PRESENTATION Module 4: Understanding Resilience and Recovery From the Consumer Perspective Roadmap to Seclusion and Restraint Free Mental Health Services “Ex-patients have similar feelings and experiences and they can understand and support each other in a way that’s different from family or professional services. We can do mutual support and understand the way we were treated. Peg Sullivan, Consumer • Self-help is a concept, not a single program model. • A consumer-run drop-in center is a center for consumer self-help, advocacy, and education. • Mental health service providers are increasingly recognizing service animals as an excellent resource for consumers. • The Wellness Recovery Action Plan (WRAP) is a consumer-based structured system for monitoring symptoms. • Psychiatric advance directives and prime directives support a partnership in making decisions about mental health issues. Module 7 Review and Action Plan 12 PRESENTATION Module 5: Strategies to Prevent Seclusion and Restraint Roadmap to Seclusion and Restraint Free Mental Health Services John N. Follansbee, M.D., JCAHO testimony, 1999 • Gayle Bluebird used her innovative work in comfort rooms as a preventive tool to reduce the need for seclusion and restraint. • The Center for Conflict Management for Mental Health believes that alternative resolution (including mediation) strategies can minimize the need for and the consequences of adversarial strategies. • “It almost always boils down to a communication issue, the doctor or the treatment team hasn’t really listened to what the patient is saying or hasn’t explained things well” (Judi Higginbotham, Human Rights Coordinator, Arizona State Hospital, Phoenix). Module 7 Review and Action Plan 13 PRESENTATION “It is rather impressive how creative people can be when restraint is simply not part of the treatment culture.” Roadmap to Seclusion and Restraint Free Mental Health Services “The terror of confinement, the pain of restraint, and the wound to my soul made me want to stay as far away from the mental health system as possible. It didn’t matter that it might offer me something helpful; I didn’t want any of it if that horrible experience was going to be a part of the package.” Will Pflueger, Consumer • Focus on the role of personal and professional responsibility for change in the lives of people. • Change is hard work. Personal Action Plan • You will be given time to develop a personal action plan that relates to the elimination of seclusion and restraint in your workplace. • By the end of this session, you should have a workable plan, with concrete action steps and a timeline. Module 7 Review and Action Plan 14 PRESENTATION Module 6: Sustaining Change Through Consumer and Staff Involvement Roadmap to Seclusion and Restraint Free Mental Health Services Personal Action Plan OBJECTIVE: Participants will commit to personal action to eliminate seclusion and restraint. PROCESS: Distribute the handout Personal Action Plan. Have participants review all of their personal action plans from Modules 1 through 6. Give them time to develop four or five realistic goals for themselves for the next 6 months. Once participants have finished, divide them into groups of three or four and have them share the parts of their plans that they feel comfortable sharing with the small group. Instruct participants to ask for help from their colleagues on following through with their personal action plans. Specifically, what kind of help would they like from their colleagues? DISCUSSION QUESTIONS: How can you support each other as a team in carrying out your personal action plans? MATERIALS REQUIRED: Personal Action Plan handout APPROXIMATE TIME REQUIRED: 1 hour Module 7 Review and Action Plan 15 PRESENTATION Exercise/Discussion—Module 7 Roadmap to Seclusion and Restraint Free Mental Health Services Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has. Margaret Mead • You will be given time as a group to develop a workplace action plan that relates to the elimination of seclusion and restraint in your workplace. • By the end of this session, you should have a workable plan, with concrete action steps and a timeline. • Organize yourselves in whatever way you think will work best, given your organization. • Pick one or two areas to concentrate on. Areas could include trauma, recovery, resilience, data, debriefing, staff training, and consumer support. Module 7 Review and Action Plan 16 PRESENTATION Workplace Action Plan Roadmap to Seclusion and Restraint Free Mental Health Services Workplace Action Plan OBJECTIVE: Participants will commit to workplace action to eliminate seclusion and restraint PROCESS: Distribute the handout Workplace Action Plan. Have participants review all of their workplace action plans from Modules 1 through 6. As a group, have them define the following goals: In the next year, we want to decrease the number of restraints by _____; the number of seclusions by ____; the hours of restraints by _____; and the hours of seclusion by _____. Have the participants focus on two or three overarching goals. Goals might include incorporating a trauma paradigm, supporting resilience and recovery with consumers, enhancing a debriefing session, creating a comfort room, establishing an external monitoring system, incorporating service animals on the unit, etc. Each of the two or three overarching goals should have four or five action steps, including dates and who will be responsible for implementing these steps. An evaluation component also is needed. Finally, make a plan for educating other staff members who have not gone through the training. It is important that management representatives participate in and support this process. DISCUSSION QUESTIONS: MATERIALS REQUIRED: APPROXIMATE TIME REQUIRED: • What kind of support/help will the staff need to ensure all of these goals are met? • How will you know if you are on track throughout the year? Workplace Action Plan handout Restraint and seclusion data from the past year 1 hour Module 7 Review and Action Plan 17 PRESENTATION Exercise/Discussion—Module 7 Roadmap to Seclusion and Restraint Free Mental Health Services • All trainers sign the Certificate of Completion. If possible the name on the Certificate should be done in calligraphy. • Hand participants a Certificate of Completion and personally thank them for completing the training. • As a facilitator, you may want to outline what you see as the specific strengths and challenges for this particular organization as they move forward in eliminating seclusion and restraint. Wrap Up and Evaluation • Hand out evaluation forms. Encourage participants to be as descriptive as they can be. Evaluations are anonymous. Module 7 Review and Action Plan 18 PRESENTATION Certificate of Completion Roadmap to Seclusion and Restraint Free Mental Health Services Personal Action Plan Personal Action Plan Goal Action Steps Date What Kind of Support Would I Like? Example: • Be aware of when I use “patient” by tracking myself for two weeks • March 15 • Gentle reminders from my colleagues • Ask the people I work with what they would like to be called • Daily • Gentle reminders from the people I serve • Ask my colleagues to tell me if they hear me using the word “patient” • March 10 • Other staff members to be working on the same issue Change my language Page 1 of 2 Module 7 Review and Action Plan 19 HANDOUT Review your Personal Take Action Plans from the entire training. Pick four or five goals that you are personally willing to work on to eliminate/reduce seclusion and restraint. Make the goals realistic, measurable, and doable! Roadmap to Seclusion and Restraint Free Mental Health Services Personal Action Plan (continued) Action Steps Date What Kind of Support Would I Like? Page 2 of 2 Module 7 Review and Action Plan 20 HANDOUT Goal Roadmap to Seclusion and Restraint Free Mental Health Services Workplace Action Plan Previous Year Year to Date GOAL for 12 months from now # of Seclusions # of Restraints Hours of Seclusion Hours of Restraints Workplace Action Plan Goal Example: Have peer-run support groups meeting in-house once a week Action Steps Who is Responsible Date • Contact outside consumer organization for facilitating peer support groups. • Nancy Jones, Therapist • March 1 • Coordinate meeting between outside facilitators and staff. • Nancy Jones, Therapist • March 15 • Reserve space. • Kim Sung, Therapist • March 15 • Notify consumers on units of peer support group opportunities. • Ferdinand Lopez, Nurse Manager • March 30 • Order refreshments. • Sam Smith, Nutritionist • March 30 Page 1 of 2 Module 7 Review and Action Plan 21 HANDOUT Seclusion/Restraint Rates Roadmap to Seclusion and Restraint Free Mental Health Services Workplace Action Plan (continued) Action Steps Who is Responsible Date Page 2 of 2 Module 7 Review and Action Plan 22 HANDOUT Goal Certificate of Completion This certifies that has successfully completed the training for Roadmap to Seclusion and Restraint Free Mental Health Services _________________ Date _________________ Trainer Signature _________________ Trainer Signature _________________ Trainer Signature Roadmap to Seclusion and Restraint Free Mental Health Services Evaluation Please list the four most important things you learned from the training and how you will use the information. What did I learn? How will I use it? A. A. B. B. C. C. D. D. Page 1 of 2 Module 7 Review and Action Plan 24 Roadmap to Seclusion and Restraint Free Mental Health Services Evaluation (continued) 2. The content presented during the training was useful to me: 1 Not at all 2 Not really 3 So so 4 Definitely 5 Extremely 3. What did you learn that will help you the most in your work? 4. Other comments, suggestions, etc. Page 2 of 2 Module 7 Review and Action Plan 25 Roadmap to Seclusion and Restraint Free Mental Health Services RESOURCES Resources 1 Roadmap to Seclusion and Restraint Free Mental Health Services RESOURCES Web Sites . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Policies and Position Statements . . . . . . . . . . . . . . . 1. American Nurses Association . . . . . . . . . . . . . . . . 2. American Psychiatric Nurses Association . . . . . . . . 3. Federation of Families for Children’s Mental Health . 4. NAMI . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5. National Association of State Mental Health. . . . . . Program Directors 6. National Mental Health Association . . . . . . . . . . . . 7. Pennsylvania: Restraints, Seclusion, and Exclusion. in State Mental Hospitals and Restoration Center . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .3 10 10 15 22 24 28 . . . . . . . . . . 30 . . . . . . . . . . 35 Resources 2 Roadmap to Seclusion and Restraint Free Mental Health Services WEB SITES This list of Web sites is a selected sampling. It is not intended to be all-inclusive. Advocates, Inc. Advocates mission is to help people with psychiatric illness, chemical dependency, developmental disabilities, or other problems in living. They provide community-centered services that empower people to deal effectively with their difficulties, to pursue their own individual aspirations, and to realize satisfaction in their relationships, their work, and their communities. 27 Hollis Street Framingham, MA Phone: 508-620-0024 Fax: 508-626-0356 www.advocatesinc.org American Academy of Child and Adolescent Psychiatry (AACAP) 3615 Wisconsin Avenue, NW Washington DC 20016-3007 Phone: 202-966-7300 Fax: 202-966-2891 AACAP assists parents and families in understanding developmental, behavioral, emotional, and mental disorders affecting children and adolescents. www.aacap.org ANA is the only full-service professional organization representing the Nation’s entire registered nurse population. From the halls of Congress and Federal agencies to board rooms, hospitals, and other health care facilities, ANA is the strongest voice for the nursing profession and for workplace advocacy. American Nurses Association (ANA) 8515 Georgia Avenue Suite 400 Silver Spring, MD 20910 1-800-274-4ANA www.ana.org The American Psychiatric Association is an organization of psychiatrists working together to ensure humane care and effective treatment for all persons with mental illnesses, including substance use disorders. It is the voice and conscience of modern psychiatry. Its vision is a society that has available, accessible quality psychiatric diagnosis and treatment. American Psychiatric Association 1000 Wilson Boulevard Suite 1825 Arlington, VA 23209-3901 Phone: 703-907-7300 E-mail: apa@psych.org www.psych.org APNA provides leadership to advance psychiatric-mental health nursing practice, improves mental health care for culturally diverse individuals, families, groups, and communities, and shapes health policy for the delivery of mental health services. The American Psychiatric Nurses Association (APNA) 1555 Wilson Boulevard, Suite 602 Arlington, VA 22209 Phone: 703-243-2443 Fax: 703-243-3390 www.apna.org The American Psychological Association is a scientific and professional organization that advances psychology as a science and profession and as a means of promoting health and human welfare. American Psychological Association 750 First Street, NE Washington, DC 20002-4242 Phone: 800-74-2721 or 202-336-5500 www.apa.org Page 1 of 7 Resources 3 Roadmap to Seclusion and Restraint Free Mental Health Services Resources (continued) Bazelon Center for Mental Health Law The Judge David L. Bazelon Center for Mental Health Law is a nonprofit legal advocacy organization based in Washington, DC. The Center’s name honors the Federal appeals court judge whose landmark decisions pioneered the field of mental health law, and its advocacy is based on the principle that every individual is entitled to choice and dignity. 1101 15th Street, NW Suite 1212 Washington, DC 20005-5002 Phone: 202-467-5730 Fax: 202-223-0409 TDD: 202-467-4232 www.bazelon.org Bluebird Consultants Bluebird Consultants, an innovative “traveling technical assistance program,” comes to you with years of expertise in the mental health field. Each program is designed to your specific needs providing a diverse array of services, such as the development of new consumerrun programs, troubleshooting, trainings for professionals as well as consumers, conference planning, or assistance with the development of policies and procedures. Gayle Bluebird, R.N. 110 SW 8th Avenue Fort Lauderdale, FL 33312 Phone: 954-467-1431 www.contac.org/bluebird The Centers for Medicare and Medicaid Services (CMS) is a Federal agency within the U.S. Department of Health and Human Services. CMS runs the Medicare and Medicaid programs. In partnership with the Health Resources and Services Administration, CMS runs the State Children’s Health Insurance Program (SCHIP). Centers for Medicare & Medicaid Services (formerly Health Care Financing Administration) 7500 Security Boulevard Baltimore, MD 21244-1850 Phone: 877-267-2323 or 410-786-3000 www.cms.hhs.gov The Center for Mental Health Services within the Substance Abuse and Mental Health Services Administration is charged with leading the national system that delivers mental health services. The goal of this system is to provide the treatment and support services needed by adults with mental disorders and children with serious emotional problems. Center for Mental Health Services Office of Consumer Affairs 1 Choke Cherry Road Rockville, MD 20857 Phone: 800-789-2647 Fax: 240-276-1340 www.mentalhealth.samhsa.gov This Center is a research, training, and service organization dedicated to improving the lives of persons who have psychiatric disabilities by improving the effectiveness of people, programs, and service systems. Center for Psychiatric Rehabilitation at Boston University 930 Commonwealth Avenue, W Boston, MA 02215 Phone: 617-353-3549 Fax: 617-353-7700 www.bu.edu/cpr Page 2 of 7 Resources 4 Roadmap to Seclusion and Restraint Free Mental Health Services Resources (continued) Child Welfare League of America The Child Welfare League of America is the oldest and largest national nonprofit organization developing and promoting policies and programs to protect America’s children and strengthen America’s families. The League is committed to engaging people everywhere in promoting the well-being of children, youth, and their families, and protecting every child from harm. Headquarters— 440 First Street NW, 3rd Floor Washington, DC 20001-2085 Program Office— 50 F Street NW, 6th Floor Washington, DC 20001-2085 Phone: 202-638-2952 Fax: 202-638-4004 www.cwla.org Consumer Organization and Networking Technical Assistance Center (CONTAC) A national technical assistance center, CONTAC serves as a resource center for consumers/survivors/ex-patients and consumer-run organizations across the United States, promoting self-help, recovery, and empowerment. CONTAC was developed utilizing research on ideal consumer self-help programs, successful consumer-run programs, community support service philosophy about service delivery, descriptions of mature mental health systems, and management and leadership skills. P.O. Box 11000 Charleston, WV 25339 Phone: 888-825-Tech or 304-346-9992 Fax: 304-345-7303 http://contac.org The mission of the Connecticut Department of Children and Families is to protect children, strengthen families, and help children and youth reach their fullest potential. Connecticut Department of Children and Families Office of Public Relations 505 Hudson Street Hartford, CT 06106 www.state.ct.us/dcf Federation of Families for Children’s Mental Health 1101 King Street, Suite 420 Alexandria, VA 22314 Phone: 703-684-7710 Fax: 703-836-1040 The Federation is a parent-run organization focused on the needs of children and youth with emotional, behavioral, or mental disorders and their families. www.ffcmh.org Joint Commission on Accreditation of Healthcare Organizations (JCAHO) The Joint Commission, an independent, nonprofit organization, evaluates and accredits health care organizations and programs in the United States. JCAHO’s mission is to continuously improve the safety and quality of care provided to the public through the provision of health care accreditation and related services that support performance improvement in health care organizations. One Renaissance Boulevard Oakbrook Terrace, IL 60181 Phone: 630-792-5000 Fax: 630-792-5005 www.jcaho.org Page 3 of 7 Resources 5 Roadmap to Seclusion and Restraint Free Mental Health Services Resources (continued) Mental Health Recovery Self-Help Strategies Mary Ellen Copeland is a mental health recovery educator and author. Her focus is on self-help. She has learned the concepts, skills, and strategies she teaches from her own personal experience with extreme mood swings and from her ongoing studies with people who experience psychiatric symptoms. Mary Ellen Copeland, M.S.,M.A. P.O. Box 301 West Dummerston, VT 05357 Phone: 802-254-2092 Fax: 802-257-7499 www.mentalhealthrecovery.com National Alliance for the Mentally Ill (NAMI) NAMI is a nonprofit, grassroots, self-help, support and advocacy organization of consumers, families, and friends of people with severe mental illnesses, such as schizophrenia, major depression, bipolar disorder, obsessive-compulsive disorder, and anxiety disorders. Colonial Place Three 2107 Wilson Boulevard Suite 300 Arlington, VA 22201 Phone: 703-524-7600; NAMI Help Line: 1-800-950-NAMI [6264] www.nami.org National Association of Consumer/Survivor Mental Health Administrators (NAC/SMHA) Karen Kangas, President CT Department of Mental Health and Addiction Services 410 Capitol Avenue P.O. Box 341431, MS 14CED Hartford, CT 06134-1431 Phone: 860-418-6948 Fax: 860-418-6786 E-mail: Karen.kangas@po.state.ct.us Dan Powers, Vice President Consumer Liaison Office of Community Mental Health Division of Health and Wellbeing Department of Health and Human Services POP Box 94728 Lincoln, NE 68509-4728 Phone: 402-479-5193 Fax: 402-479-5162 NACS/MHA represents State mental health department senior managers who are current or former recipients of mental health services. The Association provides a forum for members to develop strategies for balancing the often disparate demands and expectations of the two constituencies they serve: consumers/ survivors and mental health bureaucracies. The organization serves as a vehicle for networking and peer support, and is committed to expanding the participation of consumers/survivors in all aspects of the public mental health system. The Association offers technical assistance to State mental health departments who are interested in developing offices of consumer/ ex-patient relations. E-mail: Dan.Powers@hhss.state.ne.us www.nasmhpd.org Page 4 of 7 Resources 6 Roadmap to Seclusion and Restraint Free Mental Health Services Resources (continued) National Association of Protection and Advocacy, Inc. The Protection and Advocacy (P&A) System and Client Assistance Program (CAP) comprise the nationwide network of congressionally mandated, legally based disability rights agencies. P&A agencies have the authority to provide legal representation and other advocacy services, under all Federal and State laws, to all people with disabilities (based on a system of priorities for services). All P&As maintain a presence in facilities that care for people with disabilities, where they monitor, investigate, and attempt to remedy adverse conditions. These agencies also devote considerable resources to ensuring full access to inclusive educational programs, financial entitlements, health care, accessible housing, and productive employment opportunities. 900 Second Street, NE, Suite 211 Washington, DC 20002 Phone: 202-408-9514 Fax: 202-408-9520 E-mail: napas@earthlink.net www.napas.org National Association of State Mental Health Program Directors (NASMHPD) 66 Canal Center Plaza Suite 302 Alexandria, VA 22314 Phone: 703-739-9333 Fax: 703-548-9517 www.nasmhpd.org National Council for Community Behavioral Healthcare 12300 Twinbrook Parkway Suite 320 Rockville, MD 20852 Phone: 301-984-6200 Fax: 301-881-7159 NASMHPD organizes to reflect and advocate for the collective interests of State Mental Health Authorities and their directors at the national level. NASMHPD analyzes trends in the delivery and financing of mental health services and builds and disseminates knowledge and experience reflecting the integration of public mental health programming in evolving healthcare environments. The National Council for Community Behavioral Healthcare, a nonprofit trade association, is the Nation’s oldest and largest membership organization dedicated to ensuring that appropriate and affordable community-based mental health and substance abuse services are available for all individuals. www.nccbh.org National Empowerment Center, Inc. The mission of the National Empowerment Center (NEC) is to carry a message of recovery, empowerment, hope, and healing to people who have been diagnosed with mental illnesses. NEC carries the message with authority because it is a consumer/survivor/expatient-run organization. Each member is living a personal journey of recovery and empowerment that is not just the privilege of a few, but possible for each person who has been diagnosed with a mental illness. 599 Canal Street Lawrence, MA 01840 Phone: 800-769-3728 or 978-685-1494 Fax: 978-6816426 www.power2U.org Page 5 of 7 Resources 7 Roadmap to Seclusion and Restraint Free Mental Health Services Resources (continued) National Institute of Mental Health The mission of the National Institute of Mental Health (NIMH) is to diminish the burden of mental illness through research. This public health mandate demands that powerful scientific tools be harnessed to achieve better understanding, treatment, and, eventually, prevention of mental illness. 6001 Executive Boulevard, Room 8184, MSC 9663 Bethesda, MD 20892-9663 Phone: 301-443-4513 or 866-615-6464 Fax: 301-443-4279 TTY: 301-443-8431 www.nimh.nih.gov National Mental Health Association The National Mental Health Association (NMHA) is the country’s oldest and largest nonprofit organization addressing all aspects of mental health and mental illness. NMHA works to improve the mental health of all Americans, especially the 54 million individuals with mental disorders, through advocacy, education, research, and service. 2001 N. Beauregard Street 12th Floor Alexandria, VA 22314-2971 Phone: 703-684-7722 Fax: 703-684-5968 Resource center: 800-969-NMHA TTY: 800-433-5959 www.nmha.org National Mental Health Consumers’ Self-Help Clearinghouse The National Mental Health Consumers’ SelfHelp Clearinghouse provides consumer information and referrals, on-site consultation, training events, teleconferences and national conferences, a consumer library, a newsletter, and a consumer and consumer-supported nationwide database. 1211 Chestnut Street Suite 1207 Philadelphia, PA 19107 Phone: 800-553-4539 Fax: 215-636-6312 E-mail: info@mhselfhelp.org www.mhselfhelp.org PACER (Parent Advocacy Coalition for Educational Rights) The mission of PACER is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents. With assistance to individual families, workshops, and materials for parents and professionals, and leadership in securing a free and appropriate public education for all children, PACER’s work affects and encourages families in Minnesota and across the Nation. 8161 Normandale Boulevard Minneapolis, MN 55435 Phone: 952-838-9000 Fax: 952- 838-0199 www.pacer.org Pennsylvania Department of Public Welfare – Office of Mental Health and Substance Abuse Services Health and Welfare Building Room 502, P.O. Box 2675 Harrisburg, PA 17105-2675 Phone: 717-787-6443 Fax: 717-787-5394 www.dpw.state.pa.us Pennsylvania’s mental health services range from community to hospital programs with emphasis on helping people to remain in their communities. Community services are emphasized, with the aim to develop more services to help people who have serious mental illnesses break the cycle of repeated hospital admissions. Page 6 of 7 Resources 8 Roadmap to Seclusion and Restraint Free Mental Health Services Resources (continued) Research and Training Center on Family Support and Children’s Mental Health The Center’s activities focus on improving services to children and youth who have mental, emotional, or behavioral disorders and their families. Portland State University Portland, OR 97207 Phone: 503-725-3000 www.rtc.pdx.edu U.S. Psychiatric Rehabilitation Association This organization is dedicated to promoting, supporting, and strengthening communityoriented rehabilitation services and resources for persons with psychiatric disability. 601 N. Hammonds Ferry Road Suite A Linthicum, MD 21090 Phone: 410-789-7054 www.iapsrs.org Page 7 of 7 Resources 9 Roadmap to Seclusion and Restraint Free Mental Health Services POLICIES AND POSITION STATEMENTS American Nurses Association Position Statement Reduction of Patient Restraint and Seclusion in Health Care Settings Summary Dilemmas in patient care situations are an inevitable consequence of professional accountability. With regard to use of restraints, nurses struggle with conflicts stemming from patients’ rights of freedom, nurses’ feelings of obligation to “protect” patients, and family and peer pressure to use restraints. ANA believes only when no other viable option is available should restraint be employed. In those instances where restraint, seclusion, or therapeutic holding is determined to be “clinically appropriate and adequately justified,” registered nurses, who possess the necessary knowledge and skills to effectively manage the situation, must be actively involved in the assessment, implementation, and evaluation of the selected intervention. Background Nursing has a history of being involved with attempts at reduction in the use of restraint going back well over one hundred years. Frequently, when restraint was employed it was in the belief that such action would promote patient safety. It was this belief, in part, which led to the increase in restraint use in the nursing home population. As concern about the quality of patient care in that setting rose, the Nursing Home Reform Act (a part of the Omnibus Reconciliation Act of 1987) was adopted into law. The results of this law, which greatly affected the quality of care received through increased assessment of and care planning for the patient as well as through reduction of both physical and chemical restraint, have implications for individuals with mental illness as well. The patient populations affected are the elderly, psychiatric patients (adults and children), and disoriented or physically aggressive patients. The settings of restraint use include psychiatric facilities and residential sites for those with mental illness, developmental or behavioral problems; general hospitals, emergency departments, and nursing homes (Sullivan-Marx & Strumpf, 1996). Resources 10 Roadmap to Seclusion and Restraint Free Mental Health Services Definitions Restraint is... any involuntary method (chemical or physical) of restricting an individual’s freedom of movement, physical activity, or normal access to the body. Chemical restraint is… the use of a sedating psychotropic drug to manage or control behavior. Psychoactive medication used in this manner is an inappropriate use of medication. Physical restraint is… the direct application of physical force to a patient, without the patient’s permission, to restrict his or her freedom of movement (JCAHO, 2000). The physical force may be human, mechanical devices, or a combination thereof. This definition does not apply to (1) interactions with patients that are brief and focus on redirection or assistance in activities of daily living, such as hygiene, and (2) the use of any psychoactive medication that is a usual or customary part of a medical diagnostic or treatment procedure, and that is used to restrict a patient’s freedom of movement (JCAHO, 2000). Seclusion refers to… the involuntary confinement of a person in a locked room (JCAHO, 2000). Therapeutic holding is… the physical restraint of a child by at least two people to assist the child who has lost control of behavior to regain control of strong emotions (American Academy of Pediatrics, 1997). In the past, when restraint was employed, it was in the belief that such action would promote patient safety and without effective restraint and seclusion practices, patients were considered to be in danger of injuring themselves or others, including nursing staff, or being injured by other assaultive patients. The danger of employing such restraint, however, has been demonstrated to be problematic. There is a need for additional research to explore patient safety factors related to restraint and seclusion and the role of the registered nurse in their elimination. A 50-State survey by a Connecticut newspaper (Hartford Courant 1998), revealed at least 142 deaths related to the use of physical restraint or seclusion since 1988. The report also noted that the true number of deaths is much higher since data about many such deaths is not public information. In one case, a patient at Virginia’s Central State Hospital died after being restrained for 300 hours, including two intervals of approximately 110 hours each. Young men in a residential treatment facility in Pennsylvania and at a private psychiatric hospital in North Carolina died shortly after being physically restrained by personnel who were caring for them. According to statistical projections commissioned by The Courant and conducted Resources 11 Roadmap to Seclusion and Restraint Free Mental Health Services by the Harvard Center for Risk Analysis, between 50 and 150 such deaths occur every year across the country due to improper restraint procedures. The National Alliance for the Mentally Ill (NAMI, 1999) has received reports from 15 States about 24 incidents related to the use of restraints and/or seclusion, ranging from a 16-year-old in California who died while restrained by four staff members to an Ohio man who died in restraints running a temperature of 108 degrees. Situations such as these can not be allowed to continue. There is a critical need for mandated monitoring of the use (frequency, methods, etc.) of restraint and seclusion. ANA supports the rights of patients of all ages and in all settings to be treated with dignity and concern, and to receive safe, quality care. Developmentally appropriate methods of restraint must be used in the least restrictive manner. The family members, guardians, or significant others of individuals placed in restraint must be informed immediately. ANA recognizes that seclusion and/or restraint may be more likely to be employed inappropriately—that is, for nonemergency situations and/or for circumstances where no significant risk of harm exists—when hospital unit staffing is inadequate or staff is inappropriately trained to provide less restrictive interventions. Where the hospital cannot provide for an assessment by a physician or other appropriately licensed health care professional within an hour, ANA supports that all the following requirements should apply: (1) a registered nurse shall confer by telephone with a physician or other health care professional permitted by the State and hospital to order restraint or seclusion within an hour after the restraint or seclusion is initiated. (This requirement is also consistent with ANA’s proposal on obtaining telephone orders within an hour after instituting the procedure if an order cannot be obtained beforehand). (2) The reasons for a patient not being seen within the hour shall be documented in the patient record. (3) The patient must be physically assessed by a registered nurse hourly until a physician or other appropriately licensed health care professional arrives to see the patient. (4) The patient must be seen by an R.N. or physician or other health care professional permitted by the State and hospital to order restraint or seclusion within one hour after being placed in restraint or seclusion. Adding such language to the current requirements assures that the patients’ safety is not compromised by delay in assessment. To achieve reduced restraint care, formal mission statements and policies that clearly state the intent to promote a reduced restraint environment for patients must be adopted. Such statements must include a focus on (1) intention to comply with policy standards; (2) environmental designs to facilitate restraint reduction; and (3) implementation of an individualized approach grounded in the following principles: 1) all behavior has meaning; 2) patient needs are best met when behavior is understood; and 3) a systematic approach of assessment, intervention, and evaluation is the best means to respond to behavior. When instituting change toward reduced restraint care, initial educational efforts must address fundamental components of such care. Open communication and dialogue at board Resources 12 Roadmap to Seclusion and Restraint Free Mental Health Services and highest administrative levels, and including staff from all disciplines, as well as community representatives, are essential to implementing change. Early success with less complex problems, such as eliminating restraints for positional support with substitution of wedge or roll cushions, fosters confidence for handling more difficult situations. If systems lack internal resources to provide education and specialist intervention, independent nursing consultation services can be contracted to provide for these needs. Targeting specific units or groups of patients, such as all new admissions, and then identifying those who are restrained (and why) lays the groundwork for interventions aimed at eliminating restraints. Interventions may take the form of actions categorized as pharmacologic, physiologic, psychosocial, activity, or environment. Physiologic approaches include such efforts as pain relief, comfort measures, or investigating symptoms indicative of developing complications, such as hypoxia or fever. Psychosocial interventions focus on the meaning of patient behavior and address that need, e.g., is the agitated patient fearful of impending surgery? Activities can include talking with the patient, physical exercise/therapy, involvement in activities, meaningful distraction, or contact with familiar persons or places, even by telephone. Environmental adjustments may range from simple use of light to facilitate vision or relocation of the patient to another bed or room, to specifically designed units that reduce the hazards of falling. To foster transition to reduced restraint care and sustain lasting change, beliefs must be altered and knowledgeable practice enhanced through education, intensive clinical evaluation, and consistent reinforcement of standards and policy (Sullivan-Marx & Strumpf, 1996). Finally, it must be recognized that psychotropic medications are not merely “chemical restraints” but treatment strategies which can result in a decreased need for therapeutic holding and/or physical restraint. However, there must be an adequate number of professional nurses available to provide the necessary care. Staff must be educated in the use of alternatives to restraint, and such alternatives must be made available to them both through organizational policy and in fact. Only then can the safety and quality of patient care be assured. There is a critical need to provide educational opportunities for nurses to assist them to develop the necessary assessment and intervention skills to prevent the need for restraint and seclusion. ANA is concerned that lack of personnel to provide adequate monitoring of patients and less restrictive approaches to behavior management may place patients at greater risk of violation of their rights and of harm caused by being placed in seclusion and/or restraints. Resources 13 Roadmap to Seclusion and Restraint Free Mental Health Services References American Academy of Pediatrics, Committee on Pediatric Emergency Medicine (1997). The use of physical restraint interventions for children and adolescents in the acute care setting (RE9713). Pediatrics, 99(3). American Nurses Association. (2001). Code of ethics for nurses with interpretive statements. Washington, DC: American Nurses Publishing. American Psychiatric Nurses Association. (2000). Position statement on the use of seclusion and restraint. Washington, DC: Author. Health Care Financing Administration. (2000, January). Quality standards: Patients’ rights conditions of participation. www.hcfa.gov/quality/4b.htm. International Society of Psychiatric-Mental Health Nurses. (1999). A position statement on the use of restraint and seclusion. Philadelphia: Author. Joint Commission on the Accreditation of Healthcare Organizations. (2000). Automated comprehensive accreditation manual for behavioral health care. Oakbrook Terrace, IL: Author. Maier, G. (1996). Managing threatening behavior: The role of talk down and talk up. Journal of Psychosocial Nursing, 34, 25-30. National Alliance for the Mentally Ill. (1999, October). Cries of anguish: A summary of reports of restraints and seclusion abuse received since the October 1998 investigation by The Hartford Courant. www.nami.org/update/hartford.html. Occupational Safety and Health Administration. (1998). Guidelines for preventing workplace violence for health care and social service workers (OSHA Publication No.3148). Washington, DC: Author. Strumpf, N., & Tomes, N. (1993). Restraining the troublesome patient: A historical perspective on a contemporary debate. Nursing History Review, 1, 3-24. Sullivan-Marx, E.M., & Strumpf, N.E. (1996). Restraint-free care for acutely ill patients in the h ospital. AACN Clinical Issues: Advanced Practice in Acute and Critical Care. 7(4), 572-573. Weiss, E. (1998, October). Deadly Restraint: A nationwide pattern of death. The Hartford Courant. Effective Date: October 17, 2001 Status: Position Statement Originated By: Congress on Nursing Practice and Economics Adopted By: ANA Board of Directors Related Past Actions: 1. 2000 HOD Reduction of Patient Restraint and Seclusion in Health Care Settings (Action Report) Resources 14 Roadmap to Seclusion and Restraint Free Mental Health Services American Psychiatric Nurses Association Position Statement on the Use of Seclusion and Restraint Introduction Psychiatric-mental health nursing has a 100-year history of caring for patients in psychiatric facilities. Currently, nurses serve as frontline workers as well as unit-based and executive level administrators in virtually every organization providing inpatient psychiatric treatment. Therefore, as the professional organization for psychiatric-mental health nurses, the American Psychiatric Nurses Association (APNA) recognizes that the ultimate responsibility for maintaining the safety of those in the treatment environment and for maintaining standards of care in the day-to-day treatment of these clients rests with nursing and the hospital or behavioral health care organization that supports the unit. Thus, APNA supports a sustained commitment to the reduction of seclusion and restraint and advocates for continued research to support evidence-based practice for the prevention and management of behavioral emergencies. Furthermore, we recognize the need for and are committed to working together with physicians, clients and families, advocacy groups, other health providers, and our nursing colleagues in order to achieve the vision of eliminating seclusion and restraint. Background In the mid-1800s proponents of “moral treatment” of psychiatric patients advocated the elimination of the practice of restraining patients. Despite the relative success of this movement in England and Europe, psychiatrists in the United States concluded that restraints could never be eliminated in the United States (Bockoven, 1963; Deutsch, 1949; Freedman, Kaplan, & Sadock, 1975; Strumpf & Tomes, 1993). To this day, belief in the necessity for continuing the practice of secluding and restraining patients persists. Fisher (1994) concludes from his review of the literature that not only is it “nearly impossible to operate a program for severely symptomatic individuals without some form of seclusion or physical or mechanical restraint” (p. 1584) but that these methods are effective in preventing injury and reducing agitation. However, the determination of the efficacy of the use of seclusion and restraint is not grounded in research that supports the therapeutic efficacy of this intervention, but upon the observation that the intervention interrupts and controls the patient’s behavior (Walsh & Randell, 1995). Recent research has prompted psychiatric-mental health nurses to question the therapeutic benefit of secluding and restraining psychiatric patients. Some of these studies underscore the potential negative impact of this practice on patients. These studies bring to the fore the ethical dilemmas inherent in the use of seclusion and restraints (Binder & McCoy, 1983; Browne & Tooke, 1992; Johnson, 1998; Mohr, Mahon, & Noone, 1998; Norris & Kennedy, 1992). On the one hand, this practice has the potential for physically and/or psychologically Resources 15 Roadmap to Seclusion and Restraint Free Mental Health Services harming patients (Brown & Tooke, 1992; Fisher, 1994; Martinez, Grimm, & Adamson, 1999) and for violating the patient’s right to autonomy and self-determination (Moss & La Puma, 1991; Stilling, 1992). On the other hand, studies of violence on inpatient units underscore the reality that violence cannot be predicted. Since the nursing staff are held responsible for maintaining the safety of all of the patients, they often see seclusion and restraint as a necessary last-resort intervention to maintain that safety (Alty, 1997; Steele, 1993). Furthermore, studies of the impact of assault on those who care for patients must be taken into consideration when developing standards for practice and when addressing organizational strategies to assure equal commitment to worker as well as patient safety (OSHA, 1998; Lanza, 1992; Poster & Ryan, 1989; Ryan & Poster, 1989). Other studies have highlighted the influence of unit philosophy and culture, treatment philosophy, staff attitudes, staff availability, staff training, ratios of patients to staff, and location in the United States on either the disparity in the incidence of seclusion and restraint or the perpetuation of the practice of secluding and restraining psychiatric patients (Browne & Tooke, 1992; Holzworth & Wills, 1999; Kirkpatrick, 1989; Harris & Morrison, 1995; Johnson & Morrison, 1993; Morrison, 1990, 1992, 1993, 1994). From the research, it appears that the key to seclusion and restraint reduction is prevention of aggression by (1) assessing the patient and intervening early with less restrictive measures such as verbal and nonverbal communication, reduced stimulation, active listening, diversionary techniques, limit setting and prn medication (Canatsey & Roper, 1997; Lehane & Rees, 1996; Maier, 1996; Martin, 1995; Morales & Duphorne, 1995; Richmond et al., 1996; Stevenson, 1991) and (2) changing aspects of the unit to promote a culture of structure, calmness, negotiation, and collaboration rather than control (Cahill, Stuart, Laraia, & Arana, 1991; Delaney, 1994; Harris & Morrison, 1995; Johnson & Morrison, 1993; Whittington & Patterson, 1996). To date, there is some evidence that changes in a unit’s treatment philosophy can lead to changes in patient behavior that will ultimately impact the incidence of the use of seclusion and/or restraints (Goren, Abraham, & Doyle, 1996). Despite the best efforts at preventing the use of seclusion and restraint, there may be times that these interventions are necessary. Thus, it is important to be cognizant of the vulnerability of clients who are secluded or restrained and the risks involved in using these interventions (Weiss, 1998). Moreover, the dangers inherent in the use of seclusion and restraint include the possibility that the client’s behavior is a manifestation of an organic or physiological problem that requires medical intervention and may therefore predispose the client to increased physiological risk during the time the individual is secluded or restrained. Therefore, skilled assessments of clients who are restrained or secluded will not only ensure the safety of clients in these vulnerable conditions but also ensure that the intervention is discontinued as soon as the client is able to be safely released. Resources 16 Roadmap to Seclusion and Restraint Free Mental Health Services Position Statement APNA believes that psychiatric-mental health nurses play a critical role in the provision of care to clients in psychiatric settings. Therefore, • We take responsibility for providing ongoing opportunities for professional growth and learning for the psychiatric-mental health nurse whose treatment promotes client safety as well as autonomy and a sense of personal control. • We promulgate professional standards that apply to all populations and in all settings where behavioral emergencies occur and that provide the framework for quality care for all individuals whose behaviors constitute a risk for safety to themselves or others. • We advocate and support evidence-based practice through research directed toward examining the variables associated with the prevention of and safe management of behavioral emergencies. • We articulate the following fundamental principles to guide action on the issue of seclusion and restraint: ○ Clients have the right to be treated with respect and dignity and in a safe, humane, culturally sensitive, and developmentally appropriate manner that respects client choice and maximizes self determination. ○ Seclusion or restraint must never be used for staff convenience or to punish or coerce patients. ○ Seclusion or restraint must be used for the minimal amount of time necessary and only to ensure the physical safety of the individual, other patients, or staff members and when less restrictive measures have proven ineffective. ○ Clients who are restrained must be afforded maximum freedom of movement while assuring the physical safety of the client and others. The least number of restraint points must be utilized and the client must be continuously observed. ○ Seclusion and restraint reduction requires preventative interventions at both the individual and milieu management levels using evidence-based practice. ○ Seclusion and restraint use is influenced by the organizational culture of a setting that develops norms for how patients are treated. Seclusion and restraint reduction efforts must include a focus on necessary culture change. ○ Hospital and behavioral healthcare organizations and their nursing leadership groups must make commitments of adequate professional staffing levels, staff time and resources to assure that staff are adequately trained and currently competent to perform treatment processes, milieu management, de-escalation techniques, and seclusion or restraint. ○ Oversight of seclusion and restraint must be an integral part of an organization’s performance improvement effort and these data must be open for inspection by internal and external regulatory agencies. Reporting requirements must be based on a common definition of seclusion and restraint. Specific data requirements must be consistent across regulatory agencies. Resources 17 Roadmap to Seclusion and Restraint Free Mental Health Services Acknowledgments APNA Seclusion and Restraints Task Force: Lynn DeLacy (Chair), Terri Chapman, Sue Ciarmiello, Kathleen Delaney, Germaine Edinger, Carole Farley-Toombs, Mary Johnson, Lyn Marshall, Marlene Nadler-Moodie, Marilyn Nendza, Pamela Nold, Linda Ovitt, Brenda Shostrom, Mary Thomas, Linda Wolff Approved by APNA Board of Directors, May 15, 2000 Resources 18 Roadmap to Seclusion and Restraint Free Mental Health Services References Alty, A. (1997). Nurses’ learning experience and expressed opinions regarding seclusion practice within one NHS trust. Journal of Advanced Nursing, 25, 786-793. Binder, R., & McCoy, S. (1983). A study of patients’ attitudes toward placement in seclusion. Hospital and Community Psychiatry, 34, 1052-1054. Bockoven, J.S. (1963). Moral treatment in American psychiatry. New York: Springer. Brown, J., & Tooke, S. (1992). On the seclusion of psychiatric patients. Social Science and Medicine, 35, 711-721. Cahill, C., Stuart, G., Laraia, M., & Arana, G. (1991). Inpatient management of violent behavior: Nursing prevention and intervention. Issues in Mental Health Nursing, 12, 239-252. Canatsey, K., & Roper, J. (1997). Removal from stimuli for crisis intervention: Using least restrictive methods to improve the quality of patient care. Issues in Mental Health Nursing, 18, 35-44. Delaney, K. (1994). Calming an escalated psychiatric milieu. Journal of Child and Adolescent Psychiatric Nursing, 7(3), 5-13. Deutsch, A. (1949). The mentally ill in America. New York: Columbia University Press. Fisher, W. (1994). Restraint and seclusion: A review of the literature. American Journal of Psychiatry, 151, 1584-1591. Freedman, A., Kaplan, H., & Sadock, B. (1975). Comprehensive textbook of psychiatry-II. Baltimore, MD: Williams & Wilkins. Goren, S., Abraham, I., & Doyle, N. (1996). Reducing violence in a child psychiatric hospital through planned organizational change. Journal of Child and Adolescent Psychiatric Nursing, 9(2), 27-36. Harris, D., & Morrison, E. (1995). Managing violence without coercion. Archives of Psychiatric Nursing, 9, 203-210. Holzworth, R. & Wills, C. (1999). Nurses’ judgments regarding seclusion and restraint of psychiatric patients: A social judgment analysis. Research in Nursing and Health, 22, 189-201. Johnson, K., & Morrison, E. (1993). Control or negotiation: A health care challenge. Nursing Administration Quarterly, 17, 27-33. Johnson, M. (1998). A study of power and powerlessness. Issues in Mental Health Nursing, 19, 191-206. Kirkpatrick, H. (1989). A descriptive study of seclusion: The unit environment, patient behavior, and nursing interventions. Archives of Psychiatric Nursing, 3, 3-9. Lehane, M., & Rees, C. (1996). Alternatives to seclusion in psychiatric care. British Journal of Nursing, 5, 974, 976-979. Lanza, M. (1992). Nurses as patient assault victims: An update, synthesis, and recommendations. Archives of Psychiatric Nursing, 6, 163-171. Maier, G. (1996). Managing threatening behavior. The role of talk down and talk up. Journal of Psychosocial Nursing, 34, 25-30. Resources 19 Roadmap to Seclusion and Restraint Free Mental Health Services Martin, K. (1995). Improving staff safety through an aggression management program. Archives of Psychiatric Nursing, 9, 211-215. Martinez, R., Grimm, M., & Adamson, M. (1999). From the other side of the door: Patient views of seclusion. Journal of Psychosocial Nursing, 73 (3), 13-22. Mason, T. (1997). An ethnomethodological analysis of the use of seclusion. Journal of Advanced Nursing, 26, 780-789. Morales, E., & Duphorne, P. (1995). Least restrictive measures: Alternatives to four-point restraints and seclusion. Journal of Psychosocial Nursing and Mental Health Services, 33, 13-16; 42-43. Morrison, E.F. (1990). The tradition of toughness: A study of nonprofessional nursing care in psychiatric settings. Image: Journal of Nursing Scholarship, 22, 32-38. Morrison, E. (1992). A coercive interactional style as an antecedent to aggression in psychiatric patients. Research in Nursing and Health, 15, 421-431. Morrison, E. (1993). Toward a better understanding of violence in psychiatric settings: debunking the myths. Archives of Psychiatric Nursing, 7, 328-335. Morrison, E. (1994). The evolution of a concept: Aggression and violence in psychiatric settings. Archives of Psychiatric Nursing, 8, 245-253. Moss, R., & La Puma, J. (1991). The ethics of mechanical restraints. Hastings Center Report, January-February, 22-25. Mohr, W., Mahon, M., & Noone, M. (1998). A restraint on restraints: The need to reconsider the use of restrictive interventions. Archives of Psychiatric Nursing, 12, 95-106. Norris, M. & Kennedy, C. (1992). The view from within: How patients perceive the seclusion process. Journal of Psychosocial Nursing and Mental Health Services, 30, 7-13. Occupational Safety and Health Administration. (1998). Guidelines for preventing workplace violence for health care and social service workers (OSHA Publication No. 3148). Washington, DC: Author. Poster, E., & Ryan, J. (1989). Nurses’ attitudes toward physical assaults by patients. Archives of Psychiatric Nursing, 3, 315-322. Richmond, I., Trujillo, D., Schmelzer, J. Phillips, S., & Davis, D. (1996). Least restrictive alternatives: Do they really work? Journal of Nursing Care Quality, 11, 29-37. Ryan, J., & Poster, E. (1989). The assaulted nurse: Short-term and long-term responses. Archives of Psychiatric Nursing, 3, 323-331. Steele, R. (1993). Staff attitudes toward seclusion and restraint: Anything new? Perspectives in Psychiatric Care, 29(3), 23-28. Stevenson, S. (1991). Heading off violence with verbal de-escalation. Journal of Psychosocial Nursing, 29, 6-10. Stilling, L. (1992). The pros and cons of physical restraints and behavior controls. Journal of Psychosocial Nursing and Mental Health Services, 30(3), 18-20; 33-34. Strumpf, N., & Tomes, N. (1993). Restraining the troublesome patient. A historical perspective on a contemporary debate. Nursing History Review, 1, 3-24. Resources 20 Roadmap to Seclusion and Restraint Free Mental Health Services Walsh E., & Randell, B. (1995). Seclusion and restraint: What we need to know. Journal of Child and Adolescent Psychiatric Nursing, 8, 28-40. Weiss, E. (1998, October 11-15). Deadly restraint: A nationwide pattern of death. The Hartford Courant. Whittington, R., & Patterson, P. (1996). Verbal and non-verbal behavior immediately prior to aggression by mentally disordered people: Enhancing the assessment of risk. Journal of Psychiatric and Mental Health Nursing, 3(1), 47-54. Resources 21 Roadmap to Seclusion and Restraint Free Mental Health Services Federation of Families For Children’s Mental Health Position on the Use of Seclusion and Restraints The Federation is strongly opposed to the use of physical, chemical, or mechanical restraints and seclusion with any child but especially for children and youth who have mental, emotional, or behavioral disorders or children and youth who have been exposed to violence. We view restraint and seclusion as inhumane, cruel, and ineffective. These techniques, at best, may temporarily relieve stress for the adults in charge and always increase stress for the child or youth. There is no evidence that the use of restraints or seclusion has any therapeutic benefit whatsoever. Restraint and seclusion are not appropriate forms of treatment. Children and youth who are “out of control” need services, supports, and highly specialized attention—not seclusion. When implementation of an IEP, service, or treatment plan fails to achieve the desired or appropriate behavior, there must be a review and revision of the plan. Subjecting a child or youth to restraints and seclusion in such situations is equivalent to punishing the victim. No service or treatment plan should EVER include provisions for the routine use of seclusion or restraints. Seclusion or “time out” or any form of restraint are punishments that should be eliminated from the behavioral contracting and discipline protocols of schools, day and residential treatment centers, group homes, hospitals, and juvenile detention and correctional facilities. Holding children should be a loving act, not a violent one. Restraining children teaches them that it is acceptable to treat others with physical force when they do things you don’t like. This is a very bad message. Children and youth, whose behavior is (or appears to be) very difficult for them and those who care for them to control, need first and foremost a comprehensive assessment to learn what is causing this behavior and also figure out what function(s) it is serving. A specific and individualized service plan consisting of effective therapeutic, medical, social, educational, and rehabilitative supports and services can then be drawn up by the family and youth along with their team of service providers and advisors. Such a plan must build on the child’s and family’s strengths and address the behavioral issues of greatest concern to them first. The overarching goal of any service plan should be to support the child and family so the child can live safely at home (or as close to home as possible), go to school and be successful in the general curriculum, and fully participate in the cultural, spiritual, and recreational life of the community. Time out must be distinguished from seclusion. We would define time out as giving the child or youth the opportunity to temporarily and VOLUNTARILY remove her or himself from a Resources 22 Roadmap to Seclusion and Restraint Free Mental Health Services situation to PREVENT further escalation of stress or anxiety. Time out must also be supervised and the child should be allowed to talk to a professional or supportive and trusted adult if she or he so wishes. Time out should end when the child feels ready to return to the group. There may be rare instances where safety makes it necessary to use seclusion or restraints, such as in a life-threatening situation where there is absolutely no other way to safely protect a child whose behavior is violent or insure the safety of others who are in danger from that behavior. In such cases, only the responsible chief administrator or attending physician should authorize the procedure and • the child should NEVER be left alone—professional staff (not child care attendants or peers) trained in de-escalation and conflict resolution should be working with the child throughout the episode; • seclusion should be ended or restraints be removed as soon as the behavior begins to subside AND an effective therapeutic intervention should be initiated within no more than 15 minutes of the onset of the incident; • the child’s parents or family should be notified as soon as the seclusion or restraint is initiated; • the IEP, service, or treatment plan should be reviewed within 24 hours and revised if necessary. There should be no instances of seclusion or restraints that last more than a few minutes (i.e., 15 minutes). If they do, the child should have ready (on demand) access to food, water, bathroom facilities, and be allowed to make a phone call to a predetermined, trusted, family member, professional, or support person. Any child who is secluded for more than 15 minutes should be provided with appropriate and safe learning materials and instruction. Denial of contact with family members should never be used as tool to control or manipulate behavior. All uses of restraints, seclusion, or physical intervention should be immediately documented in the child’s file and a copy of the report should be provided to the child’s parent or guardian within 24 hours of the incident. The child’s family should be allowed to insist that restraints and seclusion not be used for their child under any circumstances and this should not jeopardize the child’s admission to or treatment at the facility. Resources 23 Roadmap to Seclusion and Restraint Free Mental Health Services NAMI Seclusion and Restraint Position Paper (Summarized from the NAMI Policy Platform) The use of involuntary mechanical or human restraints or involuntary seclusion is only justified as an emergency safety measure in response to imminent danger to a patient or others. These extreme measures can be justified only so long as, and to the extent that, an individual cannot commit to the safety of him or herself and others. Restraint and seclusion have no therapeutic value and should be used only for emergency safety by order of a physician with competency in psychiatry or a licensed independent mental health professional (LIP). A physician trained in psychiatry or a LIP should see the patient within one hour after restraints are initiated. Restraints should be continued only for periods of up to one hour at a time, and a face-to-face examination of the patient by the physician or LIP must occur prior to each time a restraint order is renewed. Alternatives to the use of restraint and seclusion should be used. De-escalation techniques and debriefings should be used after each restraint and seclusion incident. A Clear Pattern of Abuse Exposed In October 1998, The Hartford Courant published a five-part investigative series that revealed an alarming number of deaths resulting from the inappropriate use of physical restraints in psychiatric treatment facilities across the United States. A 50-state survey conducted by the newspaper documented at least 142 deaths in the past decade connected to the use of physical restraints or to the practice of seclusion. The report also suggested that the actual number of deaths is many times higher because many incidents go unreported. According to a separate statistical estimate commissioned by The Courant and conducted by the Harvard Center for Risk Analysis, between 50 and 150 restraint- or seclusion-related deaths occur every year across the country. As a result of The Hartford Courant series and NAMI’s communications with its members, NAMI members have shared their horror stories of abuse and death. These are compiled in NAMI’s report, Cries of Anguish. More than 60 personal stories of incidents from 24 States and the District of Columbia were reported as of August 2000. Resources 24 Roadmap to Seclusion and Restraint Free Mental Health Services Understanding the Issue Restraints are human or mechanical actions that restrict freedom of movement or normal access to one’s body. Since the development of more effective psychotropic medications, emergency situations have become increasingly rare. In fact, some hospitals have moved to restraint-free policies. In current practice, physical restraints are sometimes imposed on a patient involuntarily for control of the environment (curtailing individual behavior to avoid the necessity for adequate staffing or clinical interventions); coercion (forcing the patient to comply with the staff’s wishes); or punishment (staff punishing or penalizing patients). NAMI rejects these as legitimate reasons to impose restraints. Federal Protections Enacted in 2000 In October 2000, President Clinton signed the Children’s Health Act of 2000, P.L. 106-310. This significant new law established national standards that restrict the use of restraint and seclusion in all psychiatric facilities that receive Federal funds and in “non-medical community-based facilities for children and youth.” NAMI will be following the implementation of key provisions under the general requirements, which include: Restraints and involuntary seclusion (R/S) may only be imposed to ensure the physical safety of a patient. They cannot be used as punishment or for staff convenience. R/S may be imposed only under the written order of a physician or other licensed practitioner permitted to issue such orders under State law. Orders must specify the duration of and circumstances for the R/S. Although no timeframe is specified for conducting face-to-face evaluations of patients who have been or will be restrained or placed in seclusion, the legislation declares that the lack of a specified timeframe should not be interpreted as offsetting or impeding any Federal or State regulations that provide greater protections for patients. This declaration then affirms hospital rules promulgated last year by the Health Care Financing Administration (HCFA), including the “one-hour rule” that requires face to-face evaluations by licensed professional practitioners within one hour of initiating R/S. Facilities must report every death that occurs within 24 hours after a patient has been removed from R/S or where it is reasonable to assume that a death is the result of R/S. Reports must be made to agencies determined appropriate by the Department of Health and Human Services (HHS), which most likely will include State protection and advocacy agencies. Resources 25 Roadmap to Seclusion and Restraint Free Mental Health Services Within 12 months, HHS also must issue regulations specifying adequate numbers of staff for facilities and appropriate training for the use of R/S and its alternatives. For children’s non-medical community programs: R/S may be used with children in community programs only in emergencies and to ensure immediate physical safety for the child or others. Mechanical restraints are prohibited. Seclusion is allowed only when a staff member continuously monitors a child face-to-face. Time outs, however, are not considered seclusion, and physical escorts are not considered physical restraints. Only individuals trained and certified by a State-recognized body may impose R/S. Until a State certification process is in place, R/S can be used only when a supervisory or senior staff person with skills and competencies specifically listed in the legislation conducts a face-toface assessment of the child within an hour after R/S is imposed. The use of R/S must then be monitored by the supervisory or senior staff person. Required skills and competencies include an understanding of the needs and behaviors of the populations served, relationship-building, avoiding power struggles, de-escalation methods, alternatives to R/S, time limits, monitoring signs of physical distress, position asphyxia, obtaining medical assistance, and familiarity with relevant legal issues. Within 6 months, States (which license such facilities) must develop licensing and monitoring rules and HHS will begin to develop national staffing standards and guidelines. These R/S standards apply only to psychiatric treatment facilities that receive Federal funding. They do not affect use of restraint and seclusion in schools, wilderness camps, jails, or prisons. P.L. 106-310 also does not impede any Federal or State laws or regulations that provide greater protections than written in the Children’s Health Act of 2000. Thus, rules issued by the Health Care Financing Administration in 1999 that included a requirement for face-to-face evaluations by mental health professionals within one hour of initiating restraint are affirmed. NAMI’s Advocacy Goals and Strategies NAMI strongly supports full implementation of the restraint and seclusion provisions included in P.L 310-106. NAMI will monitor the progress of the Department of Health and Human Services in issuing national guidelines and regulations specifying adequate number of staff in facilities and appropriate training in the use of R/S and their alternatives. Resources 26 Roadmap to Seclusion and Restraint Free Mental Health Services NAMI will also advocate for a national standard in schools, wilderness camps, jails, and prisons. What Should You Do If You Experience Restraint and Seclusion Abuse? If you or your family member has experienced abuse of R/S in a treatment facility, you should take the following action: • Contact your State’s Protection and Advocacy program. For the phone number of your State’s program, call the National Association of Protection and Advocacy Systems (NAPAS) at 202-408-9514. If a P & A does not assist you, let NAMI know by contacting Kim Encarnation at 703-312-7895 or by E-mail at kim@nami.org. • File a complaint with the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) hotline at 1-800-994-6610 and/or complaint@jcaho.org • File a complaint with your State’s health and hospital-licensing agency. • File a complaint with your U.S. Health Care Financing Administration (HCFA) regional office. There are 10 regional offices in the United States. To find yours, call the HCFA Medicare Hotline at 1-800-638-6833. You can also call the HCFA Office of Medicare Customer Assistance, 410-786-7413. • Share your story in writing and submit it to be included in NAMI’s Cries of Anguish report. Contact Kim Encarnation at 703-312-7895 or kim@nami.org • Consider sharing your story with your local media. • Consider retaining an attorney if you believe your legal rights have been violated. Resources 27 Roadmap to Seclusion and Restraint Free Mental Health Services National Association of State Mental Health Program Directors (NASMHPD) Position Statement on Seclusion and Restraint The members of the National Association of State Mental Health Program Directors (NASMHPD) believe that seclusion and restraint, including “chemical restraints,” are safety interventions of last resort and are not treatment interventions. Seclusion and restraint should never be used for the purposes of discipline, coercion, or staff convenience, or as a replacement for adequate levels of staff or active treatment. The use of seclusion and restraint creates significant risks for people with psychiatric disabilities. These risks include serious injury or death, retraumatization of people who have a history of trauma, and loss of dignity and other psychological harm. In light of these potential serious consequences, seclusion and restraint should be used only when there exists an imminent risk of danger to the individual or others and no other safe and effective intervention is possible. It is NASMHPD’s goal to prevent, reduce, and ultimately eliminate the use of seclusion and restraint and to ensure that, when such interventions are necessary, they are administered in as safe and humane a manner as possible by appropriately trained personnel. This goal can best be achieved by (1) early identification and assessment of individuals who may be at risk of receiving these interventions; (2) high quality, active treatment programs (including, for example, peer-delivered services) operated by trained and competent staff who effectively employ individualized alternative strategies to prevent and defuse escalating situations; (3) policies and procedures that clearly State that seclusion and restraint will be used only as emergency safety measures; and (4) effective quality assurance programs to ensure this goal is met and to provide a methodology for continuous quality improvement. These approaches help to maintain an environment and culture of caring that will minimize the need for the use of seclusion and restraint. In the event that the use of seclusion or restraint becomes necessary, the following standards should apply to each episode: • The dignity, privacy, and safety of individuals who are restrained or secluded should be preserved to the greatest extent possible at all times during the use of these interventions. • Seclusion and restraint should be initiated only in those individual situations in which an emergency safety need is identified, and these interventions should be implemented only by competent, trained staff. Resources 28 Roadmap to Seclusion and Restraint Free Mental Health Services As part of the intake and ongoing assessment process, staff should assess whether or not an individual has a history of being sexually, physically, or emotionally abused or has experienced other trauma, including trauma related to seclusion and restraint or other prior psychiatric treatment. Staff should discuss with each individual strategies to reduce agitation which might lead to the use of seclusion and restraint. Discussion could include what kind of treatment or intervention would be most helpful and least traumatic for the individual. • Only licensed practitioners who are specially trained and qualified to assess and monitor the individual’s safety and the significant medical and behavioral risks inherent in the use of seclusion and restraint should order these interventions. • The least restrictive seclusion and restraint method that is safe and effective should be administered. • Individuals placed in seclusion or restraints should be communicated with verbally and monitored at frequent, appropriate intervals consistent with principles of quality care. • All seclusion and restraint orders should be limited to a specific period of time. However, these interventions usually should be ended as soon as it becomes safe to do so, even if the time-limited order has not expired. • Individuals who have been secluded or restrained and staff who have participated in these interventions usually should participate in debriefings following each episode in order to review the experience and to plan for earlier, alternative interventions. States should have a mechanism to report deaths and serious injuries related to seclusion and restraint, to ensure that these incidents are investigated, and to track patterns of seclusion and restraint use. NASMHPD also encourages facilities to conduct the following internal reviews: (1) quality assurance reviews to identify trends in seclusion and restraint use within the facility, improve the quality of care and patient outcomes, and help reduce the use of seclusion and restraint; (2) clinical reviews of individual cases where there is a high rate of use of these interventions; and (3) extensive root cause analyses in the event of a death or serious injury related to seclusion and restraint. To encourage frank and complete assessments and to ensure the individual’s confidentiality, these internal reviews should be protected from disclosure. NASMHPD is committed to achieving its goals of safely preventing, reducing, and ultimately eliminating the use of seclusion and restraint by (1) encouraging the development of policies and facility guidelines on the use of seclusion and restraint; (2) continuing to involve consumers, families, treatment professionals, facility staff, and advocacy groups in collaborative efforts; (3) supporting technical assistance, staff training, and consumer/peer-delivered training and involvement to effectively improve and/or implement policies and guidelines; (4) promoting and facilitating research regarding seclusion and restraint; and (5) identifying and disseminating information on “best practices” and model programs. In addition, NASMHPD supports further review and clarification of developmental considerations (for example, youthful and aging populations) which may impact clinical and policy issues related to these interventions. Approved by the NASMHPD membership on July 13, 1999. Resources 29 Roadmap to Seclusion and Restraint Free Mental Health Services The National Mental Health Association Position Paper The Rights of Persons with Mental Illness Purpose and Summary This statement expresses the convictions of the National Mental Health Association (NMHA) with regard to the rights of persons involved with the mental health system and/or who are recovering from mental illness (including children, adolescents, and their families). The NMHA is committed to promoting adherence by all treatment systems to the policies and principles set forth herein and to assisting our State and local affiliates in working with their State and local governments to do likewise. This pledge also includes adherence to the ADA, IDEA, the Rehabilitation Services Act, the Fair Housing Act, and other legislation that protects the rights of citizens, especially those recovering from mental illness. This statement consolidates prior policies that addressed rights issues. Background Equal justice under the law is a fundamental concept in American jurisprudence. Yet persons with mental illness are often denied equal justice in virtually every part of our country. Too often discriminatory practices proceed from the misconception that people who are in the mental health treatment system are incapable of exercising the rights of citizenship. In fact, the decision to institutionalize people or treat them against their will may be based upon the assumption that to resist treatment recommendations is evidence that one is incapable of making such a judgment. This completely ignores the principle that a person is competent unless legally proven otherwise. While major strides have been made, people with mental illness continue to be denied rights as citizens, dignity as human beings, and a life free from stigma. The NMHA recognizes that myths and misinformation prohibit the full participation of individuals recovering from mental illness in their communities. For example, despite common misperceptions, persons with mental illness are not more violent than people without mental illness. NMHA has worked to educate the public, as well as legal and medical advisors, providers, educators, and the media about laws protecting rights and to provide information that counteracts stigmatizing attitudes, language, and behavior. Specific Rights The NMHA reaffirms its commitment to equal justice and protection of legal rights for all persons with mental illness, including children, adolescents, and their families. To carry out this principle, NMHA pledges itself to protecting the civil rights of persons who are recovering from mental illness. The following rights are specifically identified because they are most likely to be abridged: Resources 30 Roadmap to Seclusion and Restraint Free Mental Health Services Rights Regarding Benefits and Service Delivery • The right to receive timely, culturally appropriate, and complete information about rights upon enrollment in a health plan, upon entering the treatment system, and at any time upon request. This information must include benefits and services, as well as information about how to access available services, appeal a decision, lodge a complaint, and/or get help to navigate a service delivery system. • The right to be fully informed of all beneficial treatment options covered and not covered, including related costs. • The right to have advance directives about treatment preferences—and the right to have them honored. • The right to insurance parity, including freedom from limits based on annual and lifetime expenditures, days or visits, co-payments, or diagnosis. • The right to the least restrictive and least intrusive response to a need for mental health services. • The right to sue the health plan for authorization denials that result in harm to the consumer. • The right to expedited reviews and appeals from one's health plan when the situation is emergent or urgent. • The right to access services in one's own community, including but not limited to crisis intervention, emergency, diversion, rehabilitation, outreach, housing, employment, and mobile services, including the right to seek care from a provider who does not participate in the health plan if the provider network is insufficient. • The right to be fully involved in treatment, referral, and discharge plans as they are developed, implemented, and revised. Parents and guardians have the right to meaningful involvement in developing and implementing the treatment plan for their children who are still minors, as well as for their adult children if consent is given by the adult consumer. • The right to be fully informed of treatment side effects and treatment alternatives in order to make informed decisions without coercion or the threat of discontinued services. • The right to selectively refuse undesired treatment services without the loss of desired services. • The right to receive services from providers who have appropriate language skills and linguistic support services. • The right to be directed to treatment modalities that are culturally competent according to ethnicity, sexual orientation, religious beliefs, and disability. • The right to access medically necessary and effective medications without being subjected to "fail first" policies, discriminatory or excessive co-payments, or timeconsuming prior authorization paperwork. • The right to receive appropriate, specialized, and individually tailored education as a component of treatment for youths. Resources 31 Roadmap to Seclusion and Restraint Free Mental Health Services • The right to receive treatment services in one’s own community, with reasonable efforts to serve children and adolescents while they remain in their homes. • The right to be transported to treatment facilities by medical personnel, rather than law enforcement agents. Rights Related to Preservation of Liberty and Personal Autonomy • The right to receive treatment services in a setting and under conditions that are the most supportive of personal liberty, with restrictions of that liberty only as needed to preserve safety. • The right to easy access to any available rights protection service and other qualified advocates, including federally funded protection and advocacy systems. • The right to assert grievances and to have them addressed in a timely manner, as well as with an external reviewer upon request, with no negative repercussions. • The right to the use of voluntary admission procedures wherever possible. • The right to receive treatment and services only with informed consent, except as overridden by a court. • The right to establish advance directives and living wills and to appoint surrogate decisionmakers (with durable power of attorney), specifying how one wishes to be treated in an emergency or if s/he is incapacitated, as permitted by law. • The right to be free from any form of corporal punishment. • The right to a humane treatment environment affording appropriate privacy and personal dignity and protection from harm. • The right to converse with others privately, to have convenient access to the telephone and mail, and to see visitors during regularly scheduled hours in inpatient or residential facilities. Rights Related to Competency • The right to be deemed competent to exercise all constitutional, statutory, and common law rights and privileges and to manage one's own affairs unless restricted or limited through appropriate due process procedures. • The right to inexpensive, stigma-free guardianship procedures that are the least intrusive necessary to accomplish the provision of appropriate services and which include a delineation of the duties of the guardian. • The right to have all restrictions explicitly enumerated in the court order and to have copies provided to the interested parties. • The right to legal counsel for every threat of loss of a privilege or right. • The right to easy access to a person's attorney or legal representative while under a commitment order. Resources 32 Roadmap to Seclusion and Restraint Free Mental Health Services • Where involuntary commitment to an inpatient facility is deemed necessary, the following rights should apply (at a minimum): o due process hearing, provision of counsel, o minimum burden of proof of “clear and convincing” evidence, o a jury trial (at their election), o presentation of witnesses and opportunity for cross examination, o clear standards for commitment based upon constitutional principles, and o commitment based on proof that: 1. the person requires the confinement being sought by the petitioner, 2. the place of confinement can provide the treatment being sought by the petitioner, 3. there are no less restrictive but suitable alternatives to the placement being sought, and 4. A specific overt act of dangerousness (including a stated threat). Rights Related to Seclusion and Restraint • Seclusion and restraint should be used only after other less restrictive techniques have been tried and failed, and only in response to violent behavior that creates extreme threats to life and safety. • Seclusion and restraint procedures should not be used on individuals with medical conditions that would render this dangerous. • Facilities should have written procedures governing the use of seclusion, restraints, and restraining procedures. These procedures should require the documentation of alternative, less intrusive intervention approaches that were tried and the rationale why these failed or were not appropriate. • Facilities should never use seclusion or restraint as punishment or for the convenience of staff. • Use of restraints and seclusion should always be implemented by experienced and trained staff, overseen by senior medical staff, approved by a physician, and be well-documented and justified in a consumer's file. • Seclusion and restraining procedures should be used only for the amount of time needed to restore safety and security of the consumer and others. • People in seclusion and restraints should be monitored on a continuous basis. • Facilities should be sufficiently staffed to reduce the need for physical and chemical restraints and the use of seclusion. • All staff should be trained and demonstrate competence in non-physical intervention techniques and in safe use of restraining procedures. • Facilities must be held accountable for all uses of seclusion and restraints, collect data, and report it to the appropriate State agency or regulatory bodies. Failure to produce appropriate data or adhere to clinical guidelines should result in sanctions. o Facilities should apply the use of advance directives, where they exist, that address the use of seclusion and restraint. Resources 33 Roadmap to Seclusion and Restraint Free Mental Health Services • Consumers should be informed that specific behaviors may result in the use of restraining procedures or seclusion. Cooperation of the consumer with the procedure should be sought. • An individual's age, developmental needs, gender issues, ethnicity, and history of sexual or physical abuse should be taken into account when implementing seclusion and restraining procedures. Rights Related to Privacy and Information Management • The right to access and supplement one's own mental health record. • The right of parents or guardians to access their minor children's mental health records, except where such information is protected by law. • The right to receive information about confidentiality protocols when consumers join a new health plan or begin treatment with a new clinician, as well as on request on an ongoing basis. • The right to withdraw, narrow, or otherwise modify terms of consent for information to be released. • Consumers have the right to be informed of: o the type(s) of information that will be disclosed (nature and extent); o who has the authority to disclose information; o to whom the information will be disclosed; and o for what purpose(s) the information is needed. Approved by the NMHA Board of Directors June 11th, 2000 Expires on December 31st, 2005 Resources 34 Roadmap to Seclusion and Restraint Free Mental Health Services Pennsylvania: Use of Restraints, Seclusion, and Exclusion in State Mental Hospitals and Restoration Center Mental Health and Substance Abuse Services Bulletin Commonwealth of Pennsylvania * Department of Public Welfare DATE OF ISSUE June 1, 2001 EFFECTIVE DATE July 1, 2001 NUMBER: SMH-01-02 SUBJECT Use of Restraints, Seclusion and Exclusion in State Mental Hospitals and Restoration Center BY: Deputy Secretary for Mental Health and Substance Abuse Services SCOPE: State Mental Hospitals and Restoration Center PURPOSE: To update and synthesize statewide policies and procedures for the use and monitoring of Restraint, Seclusion and Exclusion in OMHSAS operated facilities. POLICY: State mental hospitals and South Mountain Restoration Center shall adopt and implement the attached procedures and practices relating to the use and monitoring of Seclusion/Restraint and Exclusion, and shall revise local policies and procedures, staff training requirements and monitoring practices accordingly. BACKGROUND: It is the Office of Mental Health Substance and Abuse Services’ belief that Seclusion and Restraint are not treatment but reflect treatment failure. Since 1999, OMHSAS has become a recognized national leader in an emerging national movement to substantially reduce and ultimately eliminate these dangerous, emergency practices. The attached policies reflect the substantial reduction in OMHSAS’s use of these modalities since the first standardized policy was released in 1999, and take further steps toward the goal of ultimate elimination of their use. Resources 35 Roadmap to Seclusion and Restraint Free Mental Health Services This Bulletin synthesizes OMHSAS policies relating to seclusion and restraint developed since 1999, establishes additional controls on the use of restraint as a so-called protective device, integrates recent changes in HFCA and JCAHO requirements and adds evidence based best practices regarding seclusion and restraint safety and reduction. OBSOLETE BULLETINS: OMHSAS 99-01 Use of Restraints, Seclusion and Exclusion in State Mental Hospitals; SMH-00-01 Use of Physical Restraint in State Mental Hospitals COMMENTS AND QUESTIONS REGARDING THIS BULLETIN SHOULD BE DIRECTED TO: The Medical Director’s Office at 717-772-2351 or Bureau of Hospital Operations 705-8159 Resources 36 Roadmap to Seclusion and Restraint Free Mental Health Services USE OF RESTRAINTS, SECLUSION, AND EXCLUSION IN STATE MENTAL HOSPITALS I. Philosophy of Care The use of restraints, seclusion, and exclusion in a treatment setting must be directed by the values of the organization providing treatment. In order to affirm why and how restraint/seclusion/exclusion procedures are used, it is necessary to establish organizational values that guide and direct all administrative oversight and team involvement in providing treatment, while maintaining the safety of each individual patient. Each facility/treatment setting under the scope of this document establishes and adheres to the following value statements: ___ Restraint/seclusion/exclusion procedures may only be used as an intervention of last resort following a series of efforts by staff to promote less restrictive problem-solving by the patient and used only in emergency situations to prevent patients/residents from seriously harming themselves or others; ___ Use of a restraint/seclusion/exclusion procedure is viewed as an exceptional or extreme practice for any patient; ___ Once a restraint/seclusion/exclusion procedure is initiated, it shall be as limited in time as possible. Staff and the patients need to work together to lessen the incidence and duration of these procedures; ___ All clinical staff with a role in implementation of restraint/seclusion/exclusion procedures must be trained and demonstrate competency in their prevention and proper and safe usage; ___ Leaders of the hospital, leaders of clinical departments, and leaders of wards/units are held accountable at all times for the initiation, usage, and termination of restraint/seclusion/exclusion procedures. This accountability is demonstrated as a component of the hospital’s Performance Improvement efforts and staff competency evaluations; ___ The patient and family, as appropriate, are recognized members of the treatment team; as appropriate, family members shall be notified of each seclusion and restraint incident and of the department’s policy regarding seclusion/restraint use. Resources 37 Roadmap to Seclusion and Restraint Free Mental Health Services ___ The Client Representative or Patient Advocate is recognized as a spokesperson for the patient and shall be involved in care and treatment, if the patient so desires (within the parameters of current law/regulation); ___ The treatment plan shall address specific interventions to be used to avoid restraint/ seclusion/exclusion procedures and shall address patient strengths and cultural issues; ___ All decisions to initiate restraint/seclusion/exclusion procedures shall be based on assessment of the patient; assessments shall address history of sexual or physical abuse, violence history, and medical/psychiatric issues that may be pertinent to seclusion or restraint practices. ___ Patient/staff involvement in a post-procedure debriefing and discussion is essential to determine how future situations may be prevented or de-escalated by employing alternative problem-solving measures; ___ Patient dignity shall be maintained to the extent possible during these procedures; ___ Restraint/seclusion/exclusion procedures shall not be initiated or maintained as a substitute for treatment, as punishment, or for the convenience of staff; ___ Restraint and seclusion are emergency safety interventions, not therapeutic techniques, but shall be implemented in a manner designed to protect the patient’s safety, dignity, and emotional well being. ___ In administering restraints and seclusion, as well as in attempting to prevent its use and the necessity for subsequent/recurrent use, staff shall recognize and use the strengths of the patient, and remain sensitive to issues of cultural competence; and ___ The commitment status of the patient requiring seclusion/restraint/exclusion shall be reviewed prior to initiating any of these procedures. 1. Patients who are involuntarily committed may be placed in seclusion, restraint, or exclusion if indicated, but only when less restrictive measures and techniques have proven ineffective. 2. If a patient in voluntary treatment (Legal Section 201) requires seclusion, restraint, or exclusion, it is possible to utilize such measures if this has been agreed upon in the initial evaluation signed by the patient as part of the voluntary commitment procedure or via an advance directive. However, if the patient retracts or denies this agreement concerning Resources 38 Roadmap to Seclusion and Restraint Free Mental Health Services possible restrictions and restraints, and refuses their use, an involuntary commitment must be obtained as soon as possible under the criteria, standards, and procedures of Legal Section 302 or 304C if seclusion, restraint, or exclusion is ordered. 3. Residents of the State Restoration Center are not subject to the provision of seclusion, restraints, or exclusion. Should a resident require the use of one of these modalities for psychiatric reasons, commitment to a psychiatric treatment facility shall be initiated. ___ The specific methods of implementing and monitoring these values are detailed in the following sections. II. Family Notification On admission of the patient, the patient’s family shall be informed of the hospital’s policies/procedures regarding the use of seclusion, restraint, and exclusion. With the patient’s informed consent, as documented in the medical record, designated family members shall be informed of their opportunity to be notified of each incident of seclusion/restraint within a time frame agreed to by the family and to participate in the patient debriefing, as appropriate. III. Staff Training It is the Office of Mental Health and Substance Abuse’s philosophy and policy that restrictive interventions may only be used as a last resort to protect patients and other persons from physical injury. Consequently, staff training shall focus upon the development of skills and abilities needed to assess risk, identify escalating behaviors, and effectively assist patients to maintain control and learn safer ways of dealing with stress, anger, fear, and frustration. Training of staff shall focus upon identifying the earliest precipitant of aggression for patients with a known, suspected, or present history of aggressiveness, and on developing treatment strategies to prevent exacerbation or escalation of these behaviors. Patient involvement in the identification of precipitants is paramount. Training shall encompass the primary importance of patient safety, at all times, during the eclusion or restraint process. This shall include the time preceding the placement of a patient into seclusion or restraint as well as the time spent in seclusion or restraint. Training shall be provided to all direct-care staff during employment orientation and on an annual basis. Staff training in seclusion and restraint techniques and policies shall result in initial certification/demonstration of competency for each staff person who will be authorized to employ them. Retraining, re-certification, and demonstration of competency in the use of physical restraint shall occur annually. Resources 39 Roadmap to Seclusion and Restraint Free Mental Health Services Training in safe physical intervention techniques shall be provided only by approval/ certified instructors using methodologies approved by OMHSAS. Specific training components shall include: 1. hospital and OMHSAS policies and procedures relating to the use of, Documentation, and monitoring of seclusion and restraint; 2. assessment skills needed to identify those persons who are at risk of violence to self or others; 3. treatment interventions that will reduce the risk of violence and increase the patient’s capacity to benefit from psychosocial rehabilitation and educational programs; 4. skills in developing patient education programs that will assist patients in learning more adaptive ways of handling the stress, frustration, or anger that precipitates aggressive behavior; 5. treatment planning skills that will enable staff to better plan and coordinate treatment activities that will reduce the incidence of assaultive behaviors; 6. conflict resolution, mediation, therapeutic communication, de-escalation, and verbal violence prevention skills that will assist staff to diffuse and safely resolve emerging crisis situations; 7. the nature and identification of the possible negative psychological effects these measures may have upon some individuals, and positive therapeutic strategies to combat such effects; 8. medical precipitants to aggressive behavior; 9. understanding of how age, gender, cultural background, history of abuse or Trauma, and other personal experiences may affect a patient’s response to physical contact, holds, mechanical restraints, seclusion, or exclusion. 10. use of verbal de-escalation and crisis management techniques; 11. identification and use of less restrictive alternatives; 12. first aid and CPR; 13. use of safe physical intervention techniques and restraint techniques and devises; 14. use of alternative adaptive support or assistive devises and care strategies in lieu of protective restraints for body positioning and falls prevention; Resources 40 Roadmap to Seclusion and Restraint Free Mental Health Services 15. recognition and management of signs of patient physical and psychological distress during seclusion and restraint, and appropriate follow-up;. 16. recognition of the behavioral and psychological indicators that restraint/seclusion may be safely terminated; 17. participation in debriefings; and, 18. expectations for documentation in the patient’s medical record, the SI-815, and other PI data collection systems. IV. Patient and Staff Debriefing After each incident of seclusion, restraint or exclusion, a mental health professional and members of the treatment team shall meet with the patient for the purpose of: 1. assisting the patient to develop an understanding of the precipitants which may have evoked the behaviors necessitating the use of the restrictive technique; 2. assisting the patient to develop appropriate coping mechanisms or alternate behaviors that could be effectively utilized should similar situations/emotions/thoughts present themselves again; 3. developing and documenting a specific plan of interventions for inclusion in the Comprehensive Individualized Treatment Plan, with the intent to avert future need for restrictive techniques; and, 4. evaluating whether alternate staff responses and interventions could be more effectively used in the future. The team member shall document the debriefing process in the patient’s medical record. Findings from the staff debriefing and proposed administrative changes or strategies to prevent recurrence shall also be documented on the SI-815 incident report to facilitate hospital internal review. The debriefing processes shall be initiated within 24 hours of the end of each incident of seclusion, restraint, or exclusion, unless further delay is clinically indicated. V. CONTINUOUS PERFORMANCE IMPROVEMENT MONITORING The leadership staff of each State mental hospital shall maintain a performance improvement program designed to continuously review, monitor, and analyze the use of seclusion, restraint, and exclusion and issues related to these processes. Ongoing efforts to reduce utilization of these measures shall be employed. Resources 41 Roadmap to Seclusion and Restraint Free Mental Health Services The facility Chief Executive Officer and Assistant Superintendent for Clinical Services of each State mental hospital are responsible for assuring that ongoing documentation and monitoring of patients placed in seclusion, restraint, or exclusion are maintained. Monitoring shall consist of reviewing the necessity for use or continuation of these measures based upon documentation of unsuccessful, less restrictive alternatives, and appropriate rationale and justification. Patient “debriefing,” health teaching, clinical response to seclusion, treatment plan revisions, and incidents where the physician involved does not see the patient within thirty (30) minutes of the initiation of seclusion shall also be monitored. Seclusion or restraint incidents in excess of 12 continuous hours, or more than one seclusion/ restraint incident within 12 hours, shall be reported to the ASCS or his/her designee. Thereafter, the leadership is notified every 24 hours if either of the above circumstances continues. Events triggering notification of the ASCS noted in “c” above shall prompt ASCS review of the patient record, and consultation with the patient’s psychiatrist and other treatment team members regarding alternatives to seclusion and restraint. All incidents of seclusion, exclusion, and restraint, regardless of type, shall be documented on the State’s Risk Management Incident Reporting form (SI-815). VI. Seclusion A. Definition A brief, time-limited placement of a patient into a safe, well ventilated, furniture free, visually observable locked room for the purpose of assisting the individual to regain emotional and physical control over his/her dangerous, destructive behaviors. NOTE: Seclusion is not a modality utilized in the State Restoration Center. B. Indications Prior to the use of seclusion, the following criteria must be met: 1. All less restrictive options/interventions, including changes in pharmacological interventions, have been considered and attempted and have failed to diminish the patient’s immediate danger to self and/or others. Documentation of all such efforts shall be entered into the patient’s medical record, in addition to rationale and justification of the need for seclusion; 2. Unless clinically contraindicated, prior to the use of seclusion the patient shall be given a choice of treatment options that may assist with limiting the environmental stimuli and their consequent effects on the patient’s emotional status. The reason/justification for seclusion shall be communicated clearly to the patient. Treatment expectations and the outcomes which should occur within brief, time-limited intervals shall be carefully explained. Resources 42 Roadmap to Seclusion and Restraint Free Mental Health Services C. Contraindications Seclusion shall not be used for patients who exhibit suicidal or self-injurious behaviors or who have any known medical condition which precludes the safe application of this modality (such situations shall be determined by the attending/on-call physician on a case-bycase basis). D. Procedures 1. Each patient shall be made aware of the specific behaviors that necessitated the use of seclusion and those behaviors and mental status components which will terminate seclusion; 2. Individual treatment plans shall have goals and interventions established to change the behaviors precipitating the need for seclusion; 3. Seclusion shall be used only with a physician’s order. In emergency situations, a registered nurse may initiate the use of seclusion for the protection of the patient and/or others. The physician on duty/on-call shall be contacted immediately, and a verbal order may be obtained. The physician’s order shall not exceed one (1) hour. Orders shall specify “up to” one (1) hour, rather than a predetermined amount of time. The physician involved shall see the patient within thirty (30) minutes of the initiation of seclusion (barring extenuating circumstances), and then shall write/countersign the order for the seclusion and document his/her assessment of the patient in the medical record. Specific behavioral criteria written by the physician shall specify when the seclusion may be discontinued, to insure minimum usage. When a physician’s order has expired, the patient must be seen by a physician and his/her assessment of the patient documented before seclusion can be reordered; 4. Patients in seclusion shall be continuously monitored, face to face, through the seclusion room window or in the room itself. 5. Patients are to be removed immediately from the seclusion room once the danger to self or others is no longer imminent; 6. During the seclusion process, each patient’s dignity and need for physical care shall be carefully monitored and addressed. Each patient’s safety is of paramount concern and, as such, potentially dangerous clothing and objects shall be removed from the patient and the seclusion area. This, however, does not prohibit the use of appropriate non-dangerous attire or such things as may be therapeutically indicated (i.e., soft inanimate objects, magazines, etc.); Resources 43 Roadmap to Seclusion and Restraint Free Mental Health Services 7. Patient physical needs shall be met promptly. Opportunity for personal care, including fluids, bathroom use, exercise, meals, and hygiene, shall be provided, and the patient’s physical condition assessed and documented at no less than 15-minute intervals during the seclusion incident. VII. Restraint A. Restraint for Emergency Behavior Control 1. DEFINITION The use of manual holds or mechanical devices used to restrict movement of all or part of a patient’s body in emergency situations in which the patient’s violent behavior presents an immediate risk of physical harm to self or others, and less restrictive interventions have failed. 2. EXPECTATIONS a. All members of the treatment planning team shall be involved in preventing and reducing the need for restraints by resolving the underlying problem which necessitates restraint. b. Prior to the use of physical or mechanical restraint for aggressive behavior which presents an immediate danger to self and/or others, the patient (unless clinically contraindicated) will be given a choice of treatment options to enable him/her to regain self-control over the injurious behavior. The reason for restraint shall be communicated clearly to the patient. Behavioral expectations shall be clearly explained as conditions for release from restraint. Restraint shall never be used as substitute for treatment, as punishment, or for convenience of staff. c. Only restraint devises and techniques approved by OMHSAS may be used according to manufacturer’s instructions and for the purpose intended. See Attachment #A. d. Staff shall demonstrate competence in recognizing signs of escalating behavior that could potentially lead to physically aggressive behavior, by intervening in a therapeutic manner to prevent escalation, and to assisting persons to learn alternative ways of dealing with stress and/or anger. e. The patient’s Comprehensive Individualized Treatment Plan shall describe the therapeutic interventions to be used by staff when a patient’s behavior is starting to escalate. f. Behaviors necessitating the use of restraints must be addressed on the patient’s treatment plan. The overall goal is to eliminate the use of restrictive interventions. In doing so, it is essential that the patient’s treatment plan clearly describe the dangerous behaviors necessitating treatment, identify the antecedents or causes of such behavior and prescribe Resources 44 Roadmap to Seclusion and Restraint Free Mental Health Services coordinated and integrated treatment approaches that reduce or eliminate the dangerous behaviors. The treatment plan should also include treatment goals for the patient that will provide positive alternatives to behavior that is physically harmful to self or others. g. Individual treatment plans shall have goals and interventions written to eliminate the need for restraints. Plans shall also include behavioral indicators of impending violent behavior and positive, constructive crisis interventions. 3. PROCEDURES FOR THE USE OF MECHANICAL RESTRAINT DEVICES a. Restraints are prescription devices and shall be used only with a physician’s order. In emergency situations, a registered nurse may initiate the use of restraints for the protection of the patient and/or others. The physician on duty/on-call shall be contacted immediately and a verbal order may be obtained. The physician’s order shall not exceed one (1) hour. Orders shall specify “up to” one (1) hour, rather than a predetermined amount of time. The physician involved shall see the patient within thirty (30) minutes of the initiation of the restraints (barring extenuating circumstances), and then shall write/countersign the order for the restraints and document his/her assessment of the patient in the medical record. Specific behavioral criteria written by the physician shall specify under what conditions the restraints may be discontinued, to insure minimum usage. When a physician’s order has expired, the patient must be seen by a physician and his/her assessment of the patient documented before restraints can be reordered; b. Patients in mechanical restraint devises shall be placed on constant 1:1 observation (at arm’s length), and this action is to be documented by attending staff; c. Physical needs shall be met promptly. The patient’s physical condition shall be assessed, and the opportunity for personal care, including fluids, bathroom use, exercise, meals and hygiene, shall be provided and documented throughout each restraint incident at no less than 15-minute intervals. 4. PROCEDURES GOVERNING THE USE OF PHYSICAL RESTRAINT/HUMAN HOLDS a. Physical Restraint(PR) will only be used in situations where the person’s behavior presents a clear threat of harm to self or others and it is necessary to use approved physical restraint techniques to prevent injury to self or others; this includes restraint necessary to apprehend an involuntary patient attempting to go AWOL. Staff shall always attempt to assist the person to regain control without the use of physical restraint or any other restrictive intervention. Resources 45 Roadmap to Seclusion and Restraint Free Mental Health Services b. PR may only be used as long as absolutely necessary to protect the patient from injuring self or others. However, use of PR shall not exceed 10 minutes. If the patient has not gained control within this time period, the patient shall be transitioned to seclusion or mechanical restraint. c. The deliberate use of floor restraint techniques shall be avoided whenever possible. However, if floor techniques are used either inadvertently or by necessity, a minimum of two staff shall be involved in the restraint application, with a third staff person observing the patient for duress throughout the use of floor restraint. If insufficient staff are vailable to meet this condition, staff shall attempt to disengage from the floor hold, and wait for the patient to rise before reapplying restraint, if physical restraint continues to be needed. d. Use of physical restraint requires a physician’s order. Physician’s orders for physical restraint shall not exceed 10 minutes. The physician shall conduct a face to face evaluation of the patient within 30 minutes of initiation. e. Whenever physical restraint is used on a living area, or any area under the supervision of nursing staff, the Registered Nurse in charge of the patient’s living area shall ensure that a Registered Nurse assesses the patient’s mental and physical status within 10 minutes of PR initiation, the physician is notified, and a physician’s order obtained. f. If the incident necessitating PR occurs on grounds, in an area not under the direct supervision of nursing staff, the following procedures are to be followed: It is the responsibility of the supervisor of the staff who utilized PR to ensure that: the nursing supervisor responsible for the patient’s ward is immediately notified and provided with the following information: • a description of what happened and why it was necessary to employ PR; • any injuries to the patient or staff involved; • the current physical and behavioral status of the patient; • the immediate need for additional staff assistance, if indicated. • The incident is properly documented and the SI-815 is initiated by the person applying or observing the application of the restraint; • The patient is safely returned to the ward, as soon as possible after the incident; • Debriefing is provided to all staff involved in the incident. It is the Nursing Supervisor’s responsibility to ensure that: • a Registered Nurse notifies the physician and obtains a verbal order, • a Registered Nurse is promptly dispatched to the site of the restraint to assess and monitor the patient and determine next steps, and, Resources 46 Roadmap to Seclusion and Restraint Free Mental Health Services • additional staff are sent to the site to ensure staff and patient safety and to assist in the patient’s safe return to the ward, if necessary. • Physical restraint use may continue only so long as is needed to return the patient to his living area. g. If an incident requiring the use of physical restraint occurs off grounds, and a Registered Nurse is unavailable, the person applying or observing application of the restraint shall: • attempt to ensure the safety of the patient, staff, and the public in a manner affording the patient the most privacy and dignity possible; • contact the hospital nursing department for assistance and direction, following local policy and procedure, as soon as it is safe to do so; • provide the hospital contact person with the following information: ○ a description of what happened and why it was necessary to employ PR; ○ any injuries to the patient or staff involved; ○ the current physical and behavioral status of the patient; ○ the immediate need for additional staff assistance, if indicated. The Nursing Supervisor shall: • designate a nurse assigned to the patient’s ward to assess the emotional and physical status of the patient immediately upon return to the hospital, and • ensure that the attending psychiatrist or on-site physician is notified and a physician’s verbal order for use of the restraint is obtained. h. A physician’s order for any use of physical restraint must be obtained and the physician shall examine the patient within 30 minutes. If the incident occurs off grounds, the Registered Nurse shall notify the physician promptly when the patient is returned to the hospital and the physician examination shall occur within 30 minutes of the patient’s return. i. Physical restraint shall only be used by staff with demonstrated competency in its use. j. Physical restraint used in an off grounds emergency may be used only so long as necessary to return the patient to his hospital living area. k. It is recognized that there may be emergency situations that require an individual to act quickly to prevent harm to the patient or others. Individual staff members should refrain from attempting to use physical management techniques alone unless absolutely essential. The following guidelines should be followed in a psychiatric emergency that involves violent behavior or the potential for violent behavior: • Attempt to establish rapport with the patient. Speak to the person in a calm manner. • Acknowledge the patient’s emotions and offer to help. • At the first sign of escalating behavior, staff shall immediately summon help Resources 47 Roadmap to Seclusion and Restraint Free Mental Health Services • If other patients or visitors could be placed in danger due to the escalating behavior, remove them from the area as soon as possible. • Keep other patients from entering to the area. • Unless absolutely necessary to protect the patient, self or others, do not attempt to employ PR techniques alone. Wait for help to arrive. If physical restraints are essential, only approved interventions in which the employee has demonstrated competency, may be employed. Before and during use of any physical restraint technique, staff applying or observing the technique shall explain to the patient what is happening, why the restraint is being used, and what the patient must do to obtain release. l. Documentation requirements: At least one staff person directly involved in the administration or observation of the physical restraint episode must document the incident in the patient’s medical record; The RN who assessed the patient must also record the findings of the assessment, along with any follow-up actions recommended. The physician order and assessment shall all be documented in the medical record, as well as any ordered or recommended treatment changes. m. Documentation shall provide at least the following information: • when and where the incident occurred; • a clear description of the behaviors that necessitated use of PR; • a description of prior interventions tried and patient response; • a description of the PR techniques used and their duration; • a description of the patient’s physical and emotional response during and subsequent to the restraint episode; • a description of how the patient’s physical and emotional response was monitored during the incident; • a description of any injuries observed or suspected by staff, or reported by the patient; • the time and location of the nursing assessment; • the name of the physician notified , time of notification, name/title of employee notified, and any instructions or orders received from the physician upon notification; • the time of physician examination and physician findings and orders. Resources 48 Roadmap to Seclusion and Restraint Free Mental Health Services B. Protective Restraint 1. DEFINITION The use of restraint devices to restrict the movement of a person with a medical condition to prevent falls, achieve maximum body functioning, or promote normal body positioning, when the patient is unable to remove the restraining device without assistance. 2. INDICATIONS Protective restraint involving the use of Geri chairs, chairs with trays, bed rails, straps or cloth devices used to position the patient, restrict freedom of movement or access to one’s body, prevent falls, maintain posture and for other medical purposes shall only be used as a last resort, when: a. adaptive or assistive devices or environmental changes have failed to prevent patient injury, b. assessment of the patient’s history and condition indicates the strong probability that substantial harm to the patient will occur in absence of temporary restraint; c. the risks of potential injury exceeds the known risks of injury and death associated with use of protective restraint. 3. EXPECTATIONS a. As with restraint used for behavioral control in emergency situations, it is the goal of the OMHSAS to ultimately eliminate the use of protective restraint. b. Use of alternative interventions shall be added to the treatment plan to reduce the need for protective restraint. Such alternatives include physical therapy, ambulatory assertive devises, recliner chairs, alarms, perimeter beds, non-slip cushions or shoes, beds with shortened legs and safety belts removable by the patient. c. Use of protective restraint requires the written time limited order of the physician. d. The patient in protective restraint must be continually monitored and reassessed and the restraint removed as soon as the alternative measures for safety are feasible. 4. PROCEDURES FOR THE USE OF PROTECTIVE RESTRAINT a. Restraints are prescription devices and shall be used only with a physician’s order. In emergency situations, a registered nurse may initiate the use of restraints for the protection of the patient and/or others. The physician on duty/on-call shall be contacted immediately and a verbal order may be obtained. The physician’s order shall not exceed one (1) hour. Orders shall specify “up to” one (1) hour, rather than a predetermined amount of time. The Resources 49 Roadmap to Seclusion and Restraint Free Mental Health Services physician involved shall see the patient within thirty (30) minutes of the initiation of the restraints (barring extenuating circumstances), and then shall write/countersign the order for the restraints and document his/her assessment of the patient in the medical record. Specific behavioral criteria written by the physician shall specify under what conditions the restraints may be discontinued, to insure minimum usage. When a physician’s order has expired, the patient must be seen by a physician and his/her assessment of the patient documented before restraints can be ordered; b. Patients in restraint devises shall be placed on constant 1:1 observation (at arm’s length), and this action is to be documented by attending staff; c. Physical needs shall be met promptly. The patient’s physical condition shall be assessed, and the opportunity for personal care, including fluids, bathroom use, exercise, meals and hygiene, shall be provided and documented throughout each restraint incident at no less than 15 minute intervals. 5. PROTECTIVE RESTRAINT DOES NOT INCLUDE: a. use of adaptive, assistive, or positioning devices that can be moved or removed by the patient; b. helmets used to prevent head injury; c. wheelchairs, Geri chairs or trays, safety belts, postural supports, orthopedic devices, or bed rails, if the patient can remove these devices, and, d. alarmed chairs, beds, or doorways. e. Family notification, patient/staff debriefing, continuous quality improvement and staff training requirements contained in sections II through V of this bulletin shall also be applicable to the use of protective restraint. C. Restraint for the Purpose of Administering Necessary Medication or Medical Treatment 1. INDICATIONS Physical or mechanical restraints may be applied briefly to enable clinical staff to administer necessary medication or medical treatment consistent with established protocol in the following situations: a. To facilitate necessary medical treatment of a resisting or uncooperative patient who is adjudicated to be incompetent to make informed decisions about medical care, when a substitute decision-maker has given permission for the necessary treatment, under the provisions of Mental Health Bulletin 99-83-26; Resources 50 Roadmap to Seclusion and Restraint Free Mental Health Services b. To permit administration of prescribed psychoactive medication or facilitate veni-puncture for laboratory studies required by the use of psychoactive medication to a physically resisting patient, in accord with Mental Health Bulletin 99-85-10. 2. EXPECTATIONS a. Every effort to gain patient cooperation for essential medical procedures has occurred but failed. b. The restraint will be used only so long as is necessary to successfully complete the procedure. c. A time-limited physician’s order for the restraint procedure is obtained reflecting the anticipated length of the procedure. PRN’s and standing orders may not be used. d. The treatment plan shall be modified to address the patient’s need for restraint. e. Provisions for patient debriefing, staff training, and continuous quality improvement contained in this bulletin are met. f. Procedures for mechanical or physical restraint use described in this bulletin are followed, depending on the type of restraint used. (SectionVII, A3 or Section VII 4d). D. Contraindications and Conditions for Use ff Physical Holds and Mechanical Restraints 1. Physical restraint may not be used on persons who have known medical or physical conditions where there is reason to believe that such use would endanger their lives or exacerbate a medical condition, e.g. fractures, back injury, pregnancy, etc. See Attachment B. 2. Choice of mechanical restraint devises and positioning of the body within shall be designated by a physician based on assessment of the patient’s physical and psychiatric condition. See Attachment B. E. Human Holds or Mechanical Devises Used to Restrict Movement of All or Part of The Patient’s Body Do Not Constitute Restraint Under the Following Circumstances: 1. Physical prompting, escorting or guiding of a person to assist in development or use of ADL’s; 2. Physically holding a cooperative person in a manner that is necessary to administer needed medical, dental or nursing care; Resources 51 Roadmap to Seclusion and Restraint Free Mental Health Services 3. Physically redirecting a nonresistant person to avoid a physical confrontation with another person; 4. Locked areas or wards for security or safety purposes; 5. Use of mechanical restraints for security purposes on forensic patients subject to criminal detention, outside of the forensic center’s secure perimeter or in security emergencies, as required by law and Bulletin SMH 97-04. F. Chemical Restraint 1. DEFINITION Chemical restraint shall mean the use of drugs or chemicals for the specific and exclusive purpose of controlling aggressive patient behavior, which restricts the patient’s freedom of movement by rendering the patient semi-stuperous or unable to attend to personal needs. Drugs administered on a regular basis, as part of the individualized treatment plan, and for the purpose of treating the symptoms of mental, emotional, or behavioral disorders, and for assisting the patient in gaining progressive self-control over his/her impulses, are not considered chemical restraints. 2. POLICY It shall be the policy of the Department of Public Welfare and the Office of Mental Health and Substance Abuse Services that chemical restraints are not utilized at any State mental hospital or the Restoration Center. 3. CONTINUOUS PERFORMANCE IMPROVEMENT MONITORING The Chief Executive Officer of each State mental hospital and the Restoration Center, in conjunction with the Medical Staff, is responsible for assuring that ongoing drug utilization monitoring of patients/residents is maintained to ensure that chemical restraints are not prescribed. Leadership staff (including Nursing, Pharmacy, and Quality Improvement) and the facility Pharmacy and Therapeutics Committee shall maintain compliance with the provisions of this policy through the institution of performance improvement programs designed to continuously review, monitor, and analyze drug utilization. VIII. Exclusion A. Definition The therapeutic removal of a patient from his/her immediate environment and the restriction of this individual to an unlocked (quiet) room for a brief, time-limited period not to exceed 30 minutes, for the purpose of assisting the individual to regain emotional control. Exclusion involves the patient’s cooperation in leaving the immediate environment and in remaining in Resources 52 Roadmap to Seclusion and Restraint Free Mental Health Services another, specified area (e.g., unlocked seclusion room) with the door open and unlocked for a specified period of time. Each facility shall designate rooms/areas to be utilized for exclusion. B. The Following Events Are Not Considered Exclusion: 1. A patient’s request to spend time in a private, unlocked room is not considered exclusion and should be granted where feasible and not clinically or therapeutically contraindicated; 2. Quarantine or other preventive health measures are not considered exclusion; and Exclusion is not a modality utilized in the State Restoration Center. C. Indications Prior to the use of exclusion, the following criteria must be met: 1. All lesser restrictive treatment options/interventions, including the use of alternative pharmaceutical interventions have been considered and attempted and have failed to diminish the patient’s escalating behavior. Documentation of all such efforts shall be entered into the patient’s medical record as well as the necessary rationale and justification of the exclusion need; 2. Unless clinically contraindicated, prior to the use of exclusion the patient shall be given a choice of treatment options that may assist with limiting the environmental stimuli and their consequent effects on the patient’s emotional status. The reason/justification for exclusion shall be communicated clearly to the patient. Treatment expectations shall be carefully explained, including the outcomes which should occur within brief, time-limited intervals; and 3. Exclusion is an adjunct to treatment with defined clinical parameters of expected care and, therefore, shall never be used in a punitive or otherwise non-therapeutic manner. D. Contraindications Exclusion shall not be utilized for patients who exhibit suicidal or self-injurious behaviors for who have a known seizure disorder or any other medical condition, which precludes the safe application of this modality (such situations shall be determined by the attending/on-call physician on a case-by-case basis). E. Procedures 1. Each patient shall be made aware of the specific behaviors that necessitated the use of exclusion and those behaviors and mental status components which will terminate the exclusion; 2. Individual treatment plans shall have goals and interventions established to eliminate the need for exclusion; Resources 53 Roadmap to Seclusion and Restraint Free Mental Health Services 3. Exclusion shall be used only with a physician’s order. In emergency situations, a registered nurse may initiate the use of exclusion. Immediately the physician on duty/on-call shall be contacted and a verbal order may be obtained. The physician’s order shall not exceed 30 minutes. Orders shall specify “up to” thirty (30) minutes, rather than a predetermined amount of time. The physician involved shall see the patient within thirty (30) minutes of the initiation of exclusion (barring extenuating circumstances) and then shall write/countersign the order for the exclusion, and document his/her assessment of the patient in the medical record. Specific behavioral criteria written by the physician shall specify when the exclusion may be discontinued, to insure minimum usage. When a physician’s order has expired, the patient must be seen by a physician and his/her assessment of the patient documented before exclusion can be reordered; 4. Patients in exclusion shall be monitored/checked at routine intervals not to exceed fifteen (15) minutes; 5. Exclusion shall not affect the rights of an individual to basic sustenance, clothing, or communication with appropriate or responsible persons (i.e., family, attorneys, physicians, patient advocates, or clergy); however, any person wishing to visit the patient in exclusion must gain authorization from the attending/on-call physician; 6. Patient physical needs shall be met promptly. Opportunity for personal care, including fluids, bathroom use. Resources 54 Roadmap to Seclusion and Restraint Free Mental Health Services Commonwealth of Pennsylvania Department of Public Welfare Office of Mental Health and Substance Abuse Services February 3, 1999 SUBJECT: Guidelines for the use of physical management and mechanical restraint techniques TO: CEOs, State Mental Health Facilities and Assistant Superintendents for Clinical Services FROM: Steven Karp, D.O., Medical Director In recent months national attention has been directed toward the techniques used to restrain and physically contain persons hospitalized for psychiatric treatment, living in residential treatment settings, residing in nursing homes and even those who are incarcerated, during crisis in which their behavior poses a danger of harm to self or others. Following press reports of the death of persons subject to physical or mechanical restraint, the National Alliance for the Mentally Ill called upon the federal government to investigate and provide oversight into patient deaths in restraint. Pennsylvania Protection and Advocacy has requested we officially ban restraint practices which may have adverse medical consequences, and JCAHO had published a summary and analysis of sentinel event restraint death root causes, with recommendations for safer practice. We have subsequently affirmed that each hospital’s use of physical and mechanical restraint application techniques is based on a variety of private sector training and certification programs. These programs usually include verbal and nonverbal crisis de-escalation techniques, self-defense and physical containment strategies to promote safe physical management of the patient. Training in these certified programs is required at the time of employment, usually for all staff in patient contact assignments, and annually for all direct care staff engaged in actual physical management of patients (i.e. nursing). Internal hospital policies were subsequently developed to require use of the techniques taught in these programs. Safe physical management technique training was originally mandated for all direct care staff in State mental hospitals over 15 years ago, using a copyrighted training program provided by OMH through a private vendor. During subsequent years, some hospitals have updated the curricula, or contracted with new vendors for this service. Consequently, the systems in place across the State are no longer consistent. Although none of these systems Resources 55 Roadmap to Seclusion and Restraint Free Mental Health Services appears to teach techniques that are now known to increase risk of harm during the physical management or restraint of patients, they may not explicitly prohibit the methods and techniques that are more likely to incur a risk to patient safety nor describe the reasons for such risk. The purpose of this memorandum is to apprise all Superintendents and Assistance Superintendents for Clinical Services of the following risk factors and guidelines for the prevention of restraint deaths. They shall ensure that hospital policy and direct care staff training reflect these guidelines. A. Factors Contributing to Risk of Asphyxia During Physical Management and Restraint ___ Cocaine induced excited delirium (impaired thinking, disorientation, visual hallucinations, etc.) may increase the heart rate to a critical level when the patient is being restrained or is confined to restraints. ___ Drug or alcohol intoxication reduce respiratory drive, diminishing the individual’s realization that suffocation is occurring. ___ The patient who engages in extreme violent activity and struggles may be more vulnerable to subsequent respiratory failure during physical intervention and restraint. ___ Sudden unresponsiveness or limpness during or immediately after a struggle may indicate cardiopulmonary events that warrant immediate medical attention. ___ Preexisting risk factors combined with body position can compound the risk of sudden death, particularly following a struggle. These risk factors include: ___ Obesity ___ Alcohol and drug use ___ An enlarged heart (stress and low blood oxygen enhance the susceptibility to cardiac arrest) ___ Smoking ___ Deformities that preclude proper restraint positioning ___ Emphysema, bronchitis, asthma, colds, and other respiratory conditions enhance risk, especially if the patient is placed face down. Resources 56 Roadmap to Seclusion and Restraint Free Mental Health Services B. Procedural Factors That Increase Risk During the Restraint Process ___ All of the above preexisting risk factors are exacerbated when the patient is placed in a face down position and/or when “hands are held behind the back” holds or restraints are employed. ___ When the patient is held or restrained in a face down (prone) position, lungs are compressed and breathing may become labored. The more pressure that is applied to the person’s torso, the more compression is increased. ___ Restraint in a supine (face up) position may predispose the patient to aspiration. ___ Inadequate numbers of staff to safely manage mechanical restraint application may increase the likelihood that staff will place their body weight across the patient’s back, or use other unsafe practices which enhance the danger of patient injury. ___ Failure to search the patient for contraband when placed in mechanical restraints can result in fire from attempted use smoking materials, or other self-harm. ___ Placing a pillow, blanket, or other item under or over the patient’s face as part of a restraint or holding process, especially when the patient is in a prone position, may result in suffocation. ___ Use of high neck vests are blamed for strangulation deaths in geriatric patients, as are use of unprotected split side bed rails. ___ Incorrect application of a mechanical restraint device enhances strangulation potential. ___ Techniques which pull the patient’s or employee’s arms across the neck contribute to risk of asphyxiation. ___ Leaving a patient in mechanical restraints without continuous staff observation precluded timely corrective action in response to physical distress. C. Guidelines for Safe Physical Management and Restraint Effective immediately, the following practices shall be adopted and incorporated into staff training curricula: 1. No fewer than 3 staff persons shall be present to apply mechanical restraints. If insufficient staff are available to safely control and restrain a patient in a psychiatric crisis, staff should remove others from harm’s way and get help before attempting physical management or restraint. Resources 57 Roadmap to Seclusion and Restraint Free Mental Health Services 2. At no time is pressure to be placed upon the patient’s back while the patient is in the prone position in a floor control situation. Patient arms, shoulders, and legs are to be immobilized. Staff body weight is not to be applied to the torso or above the upper thighs. 3. Patients in restraints must be placed under a physician’s order for constant staff observation for the duration of the restraint. 4. Patients placed in seclusion or restraint must always be promptly searched for contraband. 5. High neck vests or waist restraints are not to be used for body positioning in geriatric or long term care settings, nor is any patient to be restrained to a bed with unprotected split side rails. 6. Never place a towel, bag, blanket, or other cover over a patient’s face during the physical management process. 7. If a patient is placed under floor control in a prone position for the purpose of administering an injection or application of mechanical restraint, the patient shall be rolled/turned to the supine (face up) position as soon as the procedure is completed, unless the risk or act of vomiting is present. 8. When restraining patients in a supine position, ensure that the head is free to rotate. The head of the bed should be elevated to minimize the risk of aspiration, unless clinically contraindicated. 9. Physicians writing initial and renewed orders for restraint shall assess, consider, and document the patient’s preexisting physical condition when ordering the body position, number and manner of mechanical restraints. Deviation from the above guidelines for clinical reasons in individual cases must be documented and approved by the Assistant Superintendent for Clinical Services. In the coming months, I will be reviewing available physical management technologies and training programs with the Assistant Superintendent for Clinical Services and the Statewide Risk Management Committee to select a statewide training curriculum. Until then, please be sure that your staff are made aware of the aforementioned risk factors and policy guidelines. cc: Mr. Curie Mr. Kopchick Ms. Hardenstine Resources 58 Roadmap to Seclusion and Restraint Free Mental Health Services Commonwealth of Pennsylvania Department of Public Welfare Office of Mental Health and Substance Abuse Services May 15, 2000 SUBJECT: Mechanical Restraint Devises TO: CEOs, State Mental Health Facilities FROM: Steven Karp, D.O, Medical Director, OMHSAS, and George A. Kopchick, Jr., Director, Bureau of Hospital Operations The purpose of this memorandum is to revise OMHSAS 99-01, specifically the section entitled Restraints: Treatment Expectations, Section B, located on p.8 of that Bulletin, which describes the mechanical restraint devises which are acceptable for use for psychiatric purposes in the State mental hospital system. This memorandum is also intended to delete obsolete devises currently listed in the ERPS Manual, Appendix B. Effective immediately, restraint devises which can be legitimately used for psychiatric purposes are limited to those found in the following list. The two-letter code adjacent to the devise is the ERPS code for the devise, which will be incorporated into the SI-815 in the very near future. Permitted Devises: Soft Velcro Leather Restraint a a one point b c two point a b two point b i three point a c three point b i four point a d four point a f soft mitts All body restraints listed in the OMHS 99-01 and/or the ERPS Bulletin, Appendix B are henceforth prohibited for psychiatric purposes. The category of “Psychological Restraint” coded on Appendix B, code sheet 3, of the E/R/P/S Manual is also abolished. Resources 59 Roadmap to Seclusion and Restraint Free Mental Health Services Items (c b) helmets and (d b) geri chair may continue to be used as “protective or adaptive devises” under the conditions listed on p. 7 of OMHSAS 99-01, under the section entitled “Excluded from the Definition of Restraint,” but are not to be used as restraint devises to control acute or episodic aggressive behavior. Metal restraints may be used only in forensic units, for security purposes, and only during the transport of such patients outside of the forensic unit’s secure perimeter as described in Bulletin SMH-95-02. Metal restraints may not be used to control acute or episodic aggressive behavior or as a substitute for other restraint devises for any purpose described in Bulletin OMHSAS-99-01. Any mechanical restraint not included in the list of approved devises listed above is prohibited. Requests to introduce new or additional devises to the above list must be approved in writing by the OMHSAS Chief of Clinical Services and the Director, Bureau of Hospital Operations. cc: Mr. Curie Assistant Superintendents for Clinical Services Performance Improvement Directors Assistant Superintendents for Nursing Services Resources 60