SCI Psychosocial Process 21 - Academy of Spinal Cord Injury

Transcription

Volume 21 Number 1
SCI Psychosocial Process
The Official Journal of the American Association of
Spinal Cord Injury Psychologists and Social Workers
Inside This Issue
Skin Wounds Do Not Live in a
Vacuum: The Mind and Body
Relationship to the World
Decontamination of People
With Spinal Cord Injury: Best
Practices and Lessons
The RAP in Rehabilitation:
The Family Conference in
Practice
Posttraumatic Growth
Following Spinal Cord Injury
Conquering SCI Challenges
Through Self-Empowerment
And Self-Advocacy
Advanced Care Planning
www.aascipsw.org
The Official Journal of the American Association of Spinal Cord Injury Psychologists and Social Workers
Editorial Board
Jim Angelo
Director of Publications
Paralyzed Veterans of America
Lester Butt, PhD (President)
Director
Craig Hospital
Jeff Canar, PhD
Spinal Cord Injury Service
Hines VA Hospital
Sam Gontkovsky, PsyD
Methodist Rehabilitation Center
Center for Neuroscience and Neurological Recovery
Marylou Guihan, PhD
Research Service (151H)
Hines VA Hospital
Lance Harris, PhD (Assoc. Editor)
Private Practice
Tacoma, WA
Jayne J. Kleinman, MS, CRC
Kleinman Consulting, LLC
Irmo Marini, PhD
University of Texas-Pan American
Rehab Counseling Department
Jason Mask, LCSW (Editor)
VA Hines Hospital
Eva Miller, PhD
University of Texas Pan Am
Rehab Counseling Dept
Jeanine Penzo, LICSW
Heather Russel, PhD
Shriners Hospital for Children
Marcia Scherer, PhD
Director, Institute for Matching Person & Tech
Tom Scott (Managing Editor)
United Spinal Association
SCI Psychosocial Process Volume. 21, No. 1 www.aascipsw.org
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Inside This Issue
Feature Articles
Skin Wounds Do Not Live in a Vacuum: The Mind and Body Relationship to the World
Sigmund Hough, PhD, ABPP......................................................................................................................................5
Decontamination of People with Spinal Cord Injury: Best Practices and Lessons Learned
Kimberly M. Taylor, MA; Kristin Balfanz-Veritz, MSW; Rob Humrickhouse;
and Anjali Truitt, BS–
Sinai Health System ................................................................................................................15
The RAP in Rehabilitation: The Family Conference in Practice
Patricia Fronek ........................................................................................................................................................26
President’
s Message
A New Beginning
Lester Butt, PhD.......................................................................................................................................................36
News Briefs
Irmo Marini .............................................................................................................................................................38
Commentary
Posttraumatic Growth Following Spinal Cord Injury
Shenell D. Evans, BS; and Samuel T. Gontkovsky, PsyD ...........................................................................................40
Selected Abstracts From the 2007 Conference...........................................................................................................47
Clinical Issues
Pediatric SCI:An Update
Eva Miller, PhD .......................................................................................................................................................55
News Clips From Mathers Lifeways & Other News .................................................................................................61
Assistive Technology
Conquering SCI Challenges through Self-Empowerment and Self-Advocacy
Kimberly A. Walters .................................................................................................................................................66
Person Profile
Sigmund Hough, PhD
Jeanine Penzo,MSW, LISCW ....................................................................................................................................71
Pediatric SCI
What Family Factors Relate to Posttraumatic Stress Following Pediatric-Onset SCI?
Roseanne K. Cantor, PsyD; and Bret A. Boyer, PhD.................................................................................................74
Spinal Cord Disorders
Jeff Canar, PhD .......................................................................................................................................................80
Clinically Focused Research
Understanding More About Long-Term Care Insurance
Shirley Jackson, LICSW............................................................................................................................................83
Events and Announcements......................................................................................................................................86
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Reserve your seat now!
Join us at the 2008 Congress
of Spinal Cord Medicine &
Rehabilitation,August 11-13,
Gaylord Palms Resort &
Convention Center, Kissimmee,
Florida.
www.spinalcordcongress.org
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Feature Article
Skin Wounds Do Not Live in a Vacuum: The Mind and Body Relationship to the World
Sigmund Hough, PhD, ABPP
Introduction
Let’
s travel to a place where the idea of relationships between people, events, and even professional disciplines and
activities across cultures are acknowledged and appreciated. The important work and accomplishments within Medicine
are equally incorporated into the important work and accomplishments within Mental Health. More importantly, the
focus is on the individual. More than just words, the individual comes to be viewed with understood and respected
similarities and differences. Yet, there remain unknowns found within the individual and within our practice. Here lies
the challenge and reward in the work that lies ahead.
The integration of Mind and Body within a social system of health care and life factors is extremely important
as professionals tackle the potential life-threatening and significant quality of lifestyle change related to severe skin
wounds that can be found in individuals with spinal cord injuries and disorders (SCI/D). In addition to medical and
physical factors such as infections, pressure or pressure in combination with shearing or friction associated with such
skin conditions, there is the cognitive, behavioral, developmental, cultural/ethnicity, socioeconomic, and emotional
functioning of the individual that contributes to the condition and outcome, as well.
Pressure ulcers are wounds of the skin and in deeper soft tissue that happen in locations of bony prominence in
individuals who are immobile [1, 2]. Occurrence can be found in nursing-medical intensive acute and long-term
facilities, as well as at home and in the community [3, 4]. Severe and chronic pressure ulcers are associated with
decreased quality of life, prolonged hospitalization, and death [5, 6, 7, 8]. The estimated cost for health care related to
pressure ulcers in the United States is $11 billion per year [9]. Since the costs of skin conditions such as pressure sores
can be costly in terms of financial expense and life, emphasis has shifted towards prevention as a focus to reduce
occurrence. Research and health care practice have targeted this area as a first line of defense. Progress in medical
intervention continues to target areas of infection control, nutrition improvement, consistency in pressure relief, and
enhanced surgical management [10].
Select Demographics
The Model Spinal Cord Injury System Program established in the early 1970s, comprise 14 systems and 3 subcontractors
sponsored by the National Institute on Disability and Rehabilitation Research, Office of Special Education and
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Rehabilitative Services, U.S. Department of Education. Spinal Cord Injury Facts & Figures [11] is prepared by the
National Spinal Cord Injury Statistical Center, Birmingham, Alabama.
The estimated incidence of spinal cord injury (SCI) annually, not including those who die at the scene of the
accident, is approximately 40 cases per million population in the U.S. or roughly 12,000 new cases annually. The
prevalence of individuals in the U.S. who are alive in 2007 who have SCI is projected to be approximately 255,702
persons, ranging from 227,080 to 300,938. These specific statistics are estimates from several studies, and not from the
National SCI Database.
Although there are individual differences and specific breakdowns not reviewed, researched or made available; The
National Spinal Cord Injury Database and Model Systems comprising approximately 25,415 persons found the following
statistics:
Starting from 2005, motor vehicle crashes accounted for 42% of reported injuries. After that the frequent cause
of SCI is falls, followed by acts of violence (mostly gunshot wounds), and recreational sporting activities. The
proportion of sport injuries has been reduced while the percentage of injuries due to falls has increased. Violence
events caused 13.3% of SCI before 1980, and spiked between 1990 and 1999 at 24.8% before dropping to 15.3%
since 2005. From 1973 to 1979, the average age at injury was 28.7 years, and nearly all injuries were between 16
and 30 years of age. Since 2005, the average age at injury has increased to 39.5 years. Similarly, people over 60
years of age at injury have increased from 4.7% prior to 1980 to 11.5% since 2000. Since 2000, 77.8% of SCIs
have been males. Before 1980, 81.8% of new SCIs were males. In terms of ethnicity, persons injured between 1973
and 1979: 76.8% were Caucasian, 14.2% were African American, 6% were Hispanic, and 3% were from other
racial/ethnic groups. Since 2000, 63.0% are Caucasian, 22.7% are African American, 11.8% are Hispanic, and
2.4% are from other racial/ethnic groups. Overall, 52.5% are single when injured. Married individuals at the time of
injury and people married after injury found the probability that their marriage would remain intact to be slightly
lower when compared to the uninjured population.
Education
Educational guides [12, 13] are now available which highlight efforts to limit risk and to promote and maintain healing.
Examples include frequently changing position when sitting or lying down, exercising frequently, inspection of skin and
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keeping pressure off any red or discolored areas, the use of pressure decreasing bed and wheelchair cushions, and
drinking plenty of water daily. Education is clearly a significant part of prevention and is available through printed
guides, group classes and individualized instruction conducted by knowledgeable professionals.
Beyond Education
But knowledge is not always the answer in terms of successful outcome. Being stressed and depressed may interfere with
paying attention and follow through with recommendations such as skin checks and pressure relief. Beyond the
straightforward issue of emotional adjustment to injury, however, is perhaps a more complex appreciation for brainbehavior interaction.
The communication between the brain and other parts of the body is disrupted during SCI, and messages may
not travel pass the damaged area effectively or at all depending upon severity and location of damage. Along with
communication is the messages sent from the individual as a person in relation to the reality of the world around him or
herself.
Begrudgingly for some, rehabilitation health care is a lifelong process and is not finished when you leave the
hospital. Medical injury includes an emotional side to the event and to the aftermath. Life embraces relationships with
others to varying degrees. The mind and body travel together in life’
s journey, and not in isolation. Where there is loss,
there is feeling. “
For a second, a minute, an hour, a day, a week, a month, or years, there must, in fact, be an expression
of absence if there was ever an expression of experience. The energy and feeling associated with “
what is,”must now be
transferred to “
what was”[14]. The impact from SCI can be devastating in terms of possible effects on bowel and
bladder function, sensation and movement, spasticity, emotional well-being, lifestyle functioning, and sexuality. The
once independent and self-sufficient person who is use to being in control, is now extremely susceptible to developing
pressure sores related to multiple etiologies, including sitting or lying on one position for a long time.
Components of Comprehensive Intervention
We must be prepared to address psychosocial and mental health issues through evidence-based practice along with
utilization of the individual’
s strengths to maximize rehabilitation outcome.
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First, to address potential issues associated with specific medical and mental health care needs, there should be a
comprehensive and knowledgeable interdisciplinary team ideally consisting of:
 Administration
 Case Management
 Client/Patient/Person
 Consultants (e.g., Psychiatry, Wound Care Team, Respiratory)
 Family/Significant Other (s)
 Kineseotherapy
 Medicine
 Nursing
 Nutrition
 Occupational Therapy
 Physical Therapy
 Psychology
 Recreation Therapy
 Rehabilitation Therapy
 Social Work
 Speech and Language Pathology
 Vocational Services
 Others (e.g. Educational Services)
Second, have a professional awareness and appreciation for the potential impact of medical and mental health.
 Stress
 Mood
 Self-esteem, body image
 Expectations and fears from within the individual and outside
 Listening ability which impacts upon awareness, understanding, and concern
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 Awareness- denial and acceptance
 Compliance and follow through ability
 Decision-making ability and capacity
 Alcohol and Substance abuse and use
 Abuse history and experience
 Psychiatric history and current status
 Neurological history and current status
 Learning style, ability and function
 Experience of trauma, exposure and witnessed
Third, consistently review the efficacy of clinical practice and allow for programmatic review, revising as needed to
maximize outcome for the individual.
 Establish an environment of approachability and accessibility
 Establish an environment of open communication maximizing skills of engagement, listening, providing
support but not sympathy, providing education but not being lectured to, and solicit mutual agreement rather
than threatening consequences
 Establish an environment where the priority is comprehensive assessment of the individual before intervention
 Establish an environment where all questions raise by patients and staff are viewed not as challenges or
resistance to authority, but rather as seeking optimal care and outcome, empowerment of different opinions, and
the ongoing need to reassess one’
s knowledge base and be open to hear differences
Fourth, educate and promote the best practice during training opportunities.
 Assessment before intervention
 Supervision and consultation (new and senior staff, comprehensive education, openness, supportive feedback,
foster comfort and professional identity) [15]
 Skill in communication (active listening, purposeful, respectful)
 Skill in interpersonal interactions (client, family, significant others, staff)
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Fifth, review the possible dynamics inherent in the prevention, promotion of treatment adherence and management of
pressure ulcer and wound care.
Factors
 Age
 Cognitive Functioning
 Ethnicity, Culture and Diversity [16] (values and belief system; roles, rules, social and family systems; history
and current peer group; religious and spiritual expression; sexual orientation; life choice /preference,
expectations).
 Individuality and self-determination (“
just me, being me”
)
 Personality Characteristics and Personality Disorders [17, 18]
 Smoking Behavior (negative impact upon heart and vascular disease, stroke, chronic lung disease, variety of
cancers, and wound healing) [19, 20]
 Pain Experience
 Our Filters as Professionals
(“
I know what I know, I know what I have been taught, I know what I have taught to
others, I know or think I know what I have been allowed to learn, and I know what I
will allow”
)
 Readiness for Change
 Facilitating Change
 Motivation Level
 Motivational Interviewing
 Readiness for Change (Five Stages of Readiness for Change: precontemplation, contemplation, preparation,
action, and maintenance) [21]
 Locus of Control [22]
Six, address impact behaviors to promote and maximize rehabilitation outcome.
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What to do
 Empathy, not sympathy
 Education and ensure comprehension and retention
 Promote and reinforce independence: Empowerment
 Goals and objectives must be established for success
 Promote wellness
 Promote appropriate assertiveness
 Normalize feelings and coping strategies
 Identify the why?
 Annual/Routine Comprehensive evaluations
 Specific assessment (e.g., wound care teams)
 Educational, psychoeducation, monitoring, feedback and correction
 Intervention (e.g., pressure mapping)
 Internet and Telehealth (e.g., education, information, support, networking)
 Supportive Environment during and after rehabilitation hospital care (e.g., the challenge for continuation of
care needs when one is homeless after months of 24/7 structure supportive hospital care)
 Learning, developing and utilization of relaxation techniques
 Adding new enjoyable activities and experiences within one’
s lifestyle
 Promote good health behaviors, time management and planning, and organizational skills to optimize efficiency
of abilities.
 Humor and laughter, still the best medicine and the best mental health!
Conclusion
Most of the main ingredients have been placed on the table for the cook(s) to examine, to
be aware of the type, amount, and sequence to promote the best possible outcome. Feel free to add ingredients with
vigilance. Not all ingredients will be equal, not all meals will be satisfying, not all customers will partake in the eight
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course meal, and not all dining experiences will be memorable. But there will be times when the richness and success of
the result will overshadow the darkest of days and the bitterness of competing tastes. Remember earlier I mentioned the
challenge and reward in the work that lies in front of us related to wound care. The nice thing about the complexity of the
human existence is that knowledge and possible directions are always being developed and coming into our awareness.
The challenge is to ensure we access and utilize what is available around us, in spite of our filters. Some believe that life
is based upon an intermittent reinforcement schedule. If this is true, then perhaps here lies the reward and reason for why
some of us do what we do. To enjoy, learn, contribute, and strive to make a difference.
References
1.
Margolis, D. L. (1995). Definition of a pressure ulcer. Advanced Wound Care, 8, 8-10.
2.
Kanj, L. F., Wilking, S. V., & Phillips, T. J. (1998). Pressure Ulcers. Journal of American Academy of
Dermatology, 38, 517-36.
3.
Allman, R. M., Goode, P. S., Patrick, M. M., Burst, N., & Bartolucci, A. A. (1995). Pressure ulcer risk factors
among hospitalized patients with activity limitation. Journal of the American Medical Association, 273, 86570.
4.
Ferrell, B. A., Josephson, K., Norvid, P., & Alcorn, H. ((2000). Pressure ulcers among patients admitted to
home care. Journal of American Geriatric Society, 48, 1042-7.
5.
Bergstrom, N., Allman, R. M., Carlson, C. E., et al. (1992). Ulcers in Adults: Prediction and Prevention.
Rockville, MD: Agency for Health Care Policy and Research.
6.
Lazarus, G. S., Cooper, D. M., Knighton, D. R., Margolis, D.J., Pecoraro, R. E., Rodeheaver, G., et al. (1994).
Definitions and guidelines for assessment of wounds and evaluation of healing. Archives of Dermatology,
130, 489-93.
7.
Margolis, D. J., Bilker, W. B., Knauss, J., Baumgarten, M., & Strom, B. L. (2002). The incidence and
prevalence of pressure ulcers among elderly patients in general medical practice. Annals of Epidemiology, 12,
231-5.
8.
Xakellis, G. C., Frantz, R. A., Lewis, A., & Harvey, P. (1998). The cost-effectiveness of an intensive pressure
ulcer prevention protocol in long-term care. Advance Wound Care, 11, 22-29.
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9.
Reddy, M., Gill, S.S., & Rochon, P.A. (2006). Preventing pressure ulcers: A systematic review. JAMA, 296,
974-984.
10. Bansal, C., Scott, R. Stewart, D., & Cockerell, C. (2005). Decubitus ulcers: A review of the literature.
International Journal of Dermatology, 44, 805-810.
11. National Spinal Cord Injury Statistical Center, Birmingham, Alabama
(May 5, 2008) www.spinalcord.iab.edu
12. Paralyzed Veterans of America. (2000). Yes, You Can! A Guide to Self-care for Persons with Spinal Cord
Injury. M.C. Hammond and S. C. Burns (Eds.). Washington, DC: Paralyzed Veterans of America.
13. Consortium for Spinal Cord Medicine (2000). Pressure ulcer treatment and prevention: A clinical practice
guideline for healthcare professional. Washington, DC: Paralyzed Veterans of America, vii-vii, 1-4, and 9-12.
14. Jackson, S.A., & Hough, S. (2004). Adjustment to the process of grief following spinal cord
injury/dysfunction. SCI Psychosocial Process, 17(3), 145-155.
15. Dunn, M., Mask, J., Goldberg, J., & Tharp-Graham, S. (2003). Philosophy, goals, and processes in training
psychology and social work students in spinal cord injury settings. SCI Psychosocial Process, 16(2), 78-84.
16. Resnick, B., Vogel, A., & Luisi, D. (2006). Motivating minority older adults to exercise. Cultural Diversity &
Ethnic Minority Psychology, 12(1), 17-29.
17. Bockian, N. R. (2002). Effective interventions for personality disorders in spinal cord injury rehabilitation:
Focus on Borderline. SCI Psychosocial Process, 15(1), 30-36.
18. Perkel, S., & Bailey, A. (2005). Dialectical behavior therapy: Application of DBT principles in rehabilitation
and treatment processes for individuals with spinal cord injuries or diseases. SCI Psychosocial Process, 18(3),
134-43.
19. Whiteford, L. (2003). Nicotine, CO and CHN: the detrimental effects of smoking on wound healing. British
Journal of Community Nursing, 8(12), S22-6.
20. Lamid, S., & El Ghatit, A.Z. (1983). Smoking, spasticity and pressure sores in spinal cord injured patients.
American Journal of Physical Medicine, 62, 300-6.
21. Hough, S. (2007, March). The relationship between psychosocial factors and skin breakdowns: Prevention
and Intervention. Paper presented at Contemporary Forums: Spinal Cord Injuries, Boston, MA.
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22. Miller, E. (2003). Locus of control and adjustment to Spinal Cord Injury. SCI Psychosocial Process, 16(1),
50-52.
Sigmund Hough, PhD, ABPP, is a clinical neuropsychologist at Spinal Cord Injury Service and Psychology Service, VA
Boston Healthcare System. He is assistant professor at Harvard Medical School and adjunct assistant professor at
Boston University School of Medicine.
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Feature Article
Decontamination of People with Spinal Cord Injury: Best Practices and Lessons Learned
Kimberly M. Taylor, MA; Kristin Balfanz-Vertiz, MSW; Rob Humrickhouse; and Anjali Truitt, BS––
Sinai Health System
Abstract
Despite increased vulnerability, people with spinal cord injury (SCI) are often
excluded from emergency preparedness planning. In August 2007, Sinai Health
System conducted a decontamination drill that incorporated people with SCI in
both the planning stages and the actual drill. Participants then provided feedback
on their experiences through focus groups. Lessons learned and recommendations
for future planning are described.
Recent events, both within the United States and internationally, highlight
the importance of having procedures in place regarding decontamination of
hazardous materials. (See, for example, Horton, Berkowitz, & Kaye, 2003;
Macintyre et al., 2000; Nocera, Levitin, & Hilton, 2000; Okumura et al., 1998.) Particularly since the events of 2001,
A participant with quadriplegia is transferred
to a rolling shower chair in order to begin
decontamination.
U.S. medical facilities and governmental organizations have developed plans to
deal with emergencies and disasters (McLaughlin, 2006). The majority of these
plans, however, are created for individuals who can hear, speak, and understand English, and who have the ability to
walk, run, or drive as directed (White, Fox, Rowland, Rooney, & Aldana, 2004). Despite
their increased vulnerability, the needs of people with disabilities and of people with limited English proficiency are
often not considered in disaster planning. This is particularly true for people with spinal cord injury (SCI).
As stated by the National Council on Disability (2005), it is essential that emergency preparedness plans
account for the full range of individuals who may be part of an actual disaster. Based on this recommendation, as well as
our own commitment to provide excellent service, Sinai Health System conducted a Hazardous Material (‘
Haz Mat’
)
drill on August 1, 2007. The scenario in this drill was the release of anthrax within a contained area. Forty-five people
participated in the drill, including ten individuals with SCI. The data presented in this article thus comes from a larger
study regarding the inclusion of “
vulnerable populations”in a Haz Mat drill.
Following the drill, participants engaged in individual interviews and focus groups with research staff. Data
collection occurred in both Spanish and English, based on the preferred language of the research participants. This article
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describes how the Haz Mat plan was modified pre-drill to accommodate people with SCI, the feedback received from
these participants, and suggestions for others on how to adapt their emergency preparedness plans to include people with
SCI.
Background
As was apparent in the emergency responses to Hurricanes Rita and Katrina, a “
one-size-fits-all”approach is not
sufficient for much of the population (Fox, White, Rooney, & Rowland, 2007). This is not a new phenomenon.
According to the National Council on Disability (2005), people with disabilities have reported difficulties receiving
emergency services for decades, yet the lessons learned from one disaster are not incorporated into the plans for the next
one. As stated by John Hagar, assistant secretary of the Office of Special Education and Rehabilitation Services
(OSERS), “
So much of emergency preparedness for people with disabilities depends upon changing the way people
think about preparing for an emergency or disaster. It is about underlying attitudes and getting the mainstream public to
take into account the considerations of people with disabilities”(U.S. Department of Homeland Security, 2006, p. 2).
Unfortunately, the majority of emergency managers do not receive any training regarding the needs of people
with physical disabilities (Fox et al., 2007). They may not even think to include special populations into their
preparedness plans, or they may feel overwhelmed by the diversity of needs that people may have (Davis & Mincin,
2007). For example, a 2002 poll conducted by the Texas Governor’
s Committee on People with Disabilities found that
less than 50% of emergency managers had any training or procedures for the use of mobility equipment (e.g.,
wheelchairs, canes, etc.) in their disaster plans (Pound, 2002).
Including special populations into emergency preparedness plans is essential. Organizations such as the
National Council on Disability and the Research and Training Center on Independent Living outline steps for
organizations that wish to incorporate people with disabilities into their emergency preparedness plans. The first
recommendation is to consider the wide range of needs participants may have, and to consider options for integrating
those needs into the disaster plan (National Center on Disability, 2005). Second, people with disabilities need to be
included in both the planning process and the drills (Davis & Mincin, 2007). Davis and Sutherland (2005) also note the
universal benefit of this inclusion, for by addressing the needs of people with disabilities, the entire system is often made
better. Additionally, Kallies (2005a, 2005b) emphasizes the need for “
disability specific advisors.”These are individuals
who have disabilities as well as the ability to think through issues not just from their own lens, but also from a “
disability
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perspective.”That is, they have a user’
s perspective but are also knowledgeable about accessibility issues for a widerange of disabilities. Like Davis and Sutherland, Kallies stresses the problem-solving abilities of people with disabilities,
and reminds us to embrace the maxim of people with disabilities over the last few decades: “
Nothing about us without
us!”
Purpose
The general purpose of this study was two-fold: to gather information on how well Sinai Health System’
s current
decontamination plan worked for people with SCI, and to determine how the plan could be improved for the future. In
accordance with best practices, we included disability-specific advisors in the planning of the drill; the planning team
included staff with SCI. One of the responsibilities of the drill planning team was to make adaptations to the
decontamination plan in order to increase accessibility for people with limited mobility. Three key adaptations to the
standard Haz Mat plan were implemented for this drill:
 The inclusion of two physical therapists in the decontamination team, in order to help people with physical
disabilities move through the decontamination process as effectively and efficiently as possible.
 The use of shower chairs in the decontamination process. Standard practice in decontamination has been to
place non-ambulatory persons onto backboards and then to place the backboard on sawhorses or to use a roller
system platform (Occupational Safety and Health Administration [OSHA], 2005). This is an efficient means of
transporting a non-ambulatory individual through the decontamination process. However, the decontamination
planning team believed that, as appropriate to the individual, the substitution of shower chairs for backboards
would increase the self-efficacy of participants who can ambulate with the assistance of mobility devices.
Furthermore, they felt that this drill was an ideal test situation for this new method. (Please see Figure 1.)
 The addition of Spanish interpreters to the decontamination team, in order to increase communication between
the decon team and participants with limited English proficiency.
Setting
Sinai Health System includes Mount Sinai Hospital and Schwab Rehabilitation Hospital. Mount Sinai Hospital is a Level
1 Trauma Center and teaching hospital. Schwab Rehabilitation Hospital is a physical rehabilitation hospital that serves
persons with disabilities. Both are located on the west side of Chicago and set in an inner-city community whose
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residents experience a host of poverty-related problems, including high unemployment, low educational attainment, and
substandard housing. Services are provided primarily to patients of African-American and/or Hispanic/Latino origins.
Participants
In order to find participants with SCI to participate in the decontamination drill, fliers were posted throughout Schwab
Rehabilitation Hospital. Research staff also passed out fliers to individuals they knew who fit the criteria for
participation. Additionally, snowball sampling was utilized; participants personally invited by research staff were
encouraged to bring family or friends who also met the inclusion criteria. People with SCI who speak either English or
Spanish and were at least 18 years-old were encouraged to participate. Additionally, a group of eight participants who
speak English and do not have a disability served as a control group.
Participants in this study were not current inpatients of Sinai Health System, although many had previously
received services. Of the ten participants with SCI, seven identified themselves as “
Hispanic or Latino”
, one person as
“
African American or Black”
, one person as both “
Hispanic or Latino”and “
African American or Black”
, and one
person as “
White”
. Nine were male and one was female. Eight participants identified themselves as fluent in English and
two as monolingual Spanish. Three people had quadriplegia and seven people had paraplegia. In regards to equipment,
one person used a Foley catheter, one had a tube in his trachea, and one had a colostomy bag.
Methods and Measures
For this drill, participants were asked to report to Mount Sinai Hospital with their swimsuits under their clothes. After all
paperwork has been completed, research staff escorted participants outside and to the entrance of the drill area, the
“
Contaminated Holding Area.”This entrance served as the Decon Corridor. When participants first entered the Decon
Corridor, they were in the Hot Zone. This was the most contaminated area of the Corridor. The Haz Mat Team was
inside this corridor and consisted of several trained Sinai caregivers. The Team Leader instructed the participant on
decontamination procedures; as appropriate, an interpreter was available to communicate these directions to participants.
Participants were directed to strip off their “
contaminated”clothes (i.e., down to their swimsuits). They put all of their
clothes and belongings into a bag and medical staff took this away. Participants were then directed to the shower area.
People with SCI transferred to a shower chair and were given dishwashing detergent and a brush. They were directed to
shower for approximately three minutes, starting at their head. (Please note that this is the standard protocol for anthrax
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contamination.) Participants were directed to avoid getting “
contaminated”water in their eyes, nose, and mouth. As
needed, they were given assistance with removal of clothing and showering. Physical therapists were part of the
decontamination team and were to assist with transferring to and from the shower chair. After showering, participants
received a towel and a Mylar blanket. Participants were then directed to the Cold Zone (i.e., the area free of contaminant)
and out of the Decon Corridor.
Methods
Following the drill, participants were given an opportunity to retrieve their belongings and get dressed. Each participant
was then asked to participate in a brief demographic survey in his/her primary language. Following lunch, separate focus
groups were facilitated in English and Spanish. These were recorded using a cassette tape recorder. Research staff also
took notes to ensure accuracy. At the end of the session, each participant received $75.00 for his participation in the drill
and focus group.
The focus group facilitators asked the participants to describe their experiences during the decontamination
drill. Specific questions asked them to explain their perceptions on communication, safety, and pain. They were also
asked what was good and bad about the drill, and how procedures could be improved in the future. (See Figure 2 for the
questions asked during the focus group.)
Within two weeks of the drill, the conversations from the focus groups were transcribed, using both the notes
and audio recordings. The staff who originally took notes reviewed the transcripts and recordings to ensure accuracy.
Additionally, the translation of the Spanish transcript to English was reviewed by two bilingual staff members to create
the highest degree of accuracy. After the transcripts had been created, the process of open coding began. Researchers
first reviewed each transcript separately and looked for emergent themes. We also compared data between the people
with SCI and members of the control group. A constant comparative analysis was utilized for this, in that research staff
analyzed and compared each response to previous ones in order to find common theme categories. Responses within and
between categories could then be compared as well (Glaser, 1965). In the spirit of Rooney and White (2007), we used
this approach to compare how participants described an occurrence, a lesson learned, or a recommendation for future
action.
- 19 -
Results
Several themes arose from the group discussion. The participants believed that the greatest strength of this drill was the
speed with which the team was able to pass individuals through the decontamination process. They had many
suggestions on how to improve the Haz Mat plan for the future:
·
Communication regarding how to decontaminate: Although eight of the ten participants stated that they knew
what was expected of them throughout the decontamination process, many people offered suggestions for improving
communication in the future. They stated that the Decon Corridor was loud and that the personal protective
equipment worn by staff made it difficult both to hear their words (‘
Because they couldn’
t hear each other. One
guy’
s doing one thing, and the other is doing another thing.’
) and to see their faces for visual cues. Multiple
participants suggested using hand signals or some other type of body language to communicate (‘
So I thought there
needed to be some kind of hand signals. Some easy, simple hand signals that would be visible, like sign language’
),
and one person also recommended creating simple signs.
·
Communication regarding if the contaminant was removed: Several participants believed that if there had been a
real hazardous material on their bodies, the decontamination process would not have fully removed the dangerous
chemical. Some were concerned about the detergent used (‘
Go to a store and get some soap. Instead of dishwashing
soap. That’
s to clean dishes.’
); others were worried about the lack of water pressure (‘
It kind of trickles out. Doesn’
t
seem like it could really wash the contaminant off.’
); a few people did not feel safe because of the sharing of
sponges (‘
They had like three or four different sponges. We all got the same sponge.’
)
·
Transferring: Several participants stated that staff tried to transfer them to/from their wheelchairs to the shower
chair, and that they would have preferred to transfer themselves. (‘
Let us transfer to the shower chair from our
personal chairs. Made it seem like we couldn’
t understand anything ourselves. We should be able to handle
ourselves.’
) Some felt that the lack of understanding regarding transfers created unsafe situations. (‘
Yeah, everyone
here [i.e., in this focus group, which was all people with physical disabilities] knows, if I’
m transferring and I put
my arm here, then my weight is on it. But I guess she wasn’
t paying attention to what I was doing; I was transferring
off of the seat, and she just grabbed my arm, takes me off. I was like, oh my god! Just gotta know.’
) One participant
with quadriplegia added that, while he cannot transfer himself, staff should have asked him about the best way to
transfer because “
they just struggled with everything.”
- 20 -
·
Water: Several participants mentioned that water was unexpectedly cold (‘
I’
m sorry, them showers were COLD!’
),
and one person stressed the physical effects of this cold water on people with SCI (‘
Ah! Cold water causes spasms!’
)
Participants also reported that despite discomfort from the cold water, the majority did not feel pain during the drill.
One person stated that he had moderate pain from sitting on the shower chair without a cushion. All participants stated
that, in an actual emergency, they would go through the decontamination process, even if the contaminant was not lifethreatening and they would have to give up their wheelchairs, which cannot be decontaminated. (‘
I’
d rather be safe than
sorry,’
;‘
I agree, I would give up my chair.’
) This included the individuals who use power chairs, even when staff
provided them with the hypothetical that only manual chairs would be available after decontamination, thereby limiting
their independence for an unknown amount of time. (‘
My life is more important than a chair.’
)
Discussion
The drill planning team was surprised to hear that decontamination staff was transferring participants who were capable
of transferring themselves. They had hoped that the inclusion of physical therapists on the decontamination team would
mitigate this problem. However, only one of the two physical therapists was available at any given time, as the
decontamination staff needed to rotate in and out of the decontamination corridor. (Note: There are several reasons for
this rotation. The most important reason for this particular drill, given the 90-degree weather, was to prevent overheating
of staff members, due to the heavy protective suits they must wear.) Therefore, there were times when the therapist was
working with another participant and not available as an individual entered the Hot Zone. This left some of the
participants with staff who were not familiar with the transfer process. As described above, many participants felt safer
when transferring themselves, and insulted when they were not allowed to do so. Additionally, we believe that this
emphasis on independence and self-efficacy by the participants with SCI underscores the importance of using shower
chairs over backboards whenever possible.
Many of the suggestions provided by the participants have been incorporated into Sinai Health System’
s plan for
future decontamination, including:
·
Training ALL staff (not just therapists) to ask the participant if s/he is capable of transferring by him/herself and/or
the best way to assist him/her in transferring.
·
Developing communication skills that use gross body language, making verbal communication less necessary.
- 21 -
·
Teaching staff to take the time to explain the decontamination process to participants, and to assure them that it is
effective. While staff followed standard procedures (i.e., the dishwashing detergent is the recommended solvent for
the ‘
chemical’used during the drill; sharing sponges is safe), the planning team now realizes that in an actual
emergency, the perception of risk of recontamination in the Cold Zone could be dangerous. In order to avoid
confusion after decontamination, participants need to know that they are safe.
·
Ensuring that all equipment is functioning fully so that water temperature will be fully regulated. (Note: The water at
the drill was not supposed to be cold, but the heater broke early in the drill. Staff did not realize that this was not just
uncomfortable for participants, but could actually cause painful muscle spasms for people with SCI.)
Limitations of this Study
One limitation of this study is the sample size; only ten individuals with SCI participated. Second, the majority of these
participants were male, of Hispanic descent and living in an urban area. Other demographic groups may have differing
needs. More research needs to be conducted in order to develop a plan that meets the needs of everyone. Third, this is
just one scenario, and a variety of external conditions can impact the decontamination process. For example, as it was
August, the weather was warm and the process of showering in swimsuits (even in cold water) was not overly difficult.
Particularly for people with quadriplegia, going through this process in colder weather could lead to serious health
problems for individuals with impaired thermal regulation. Lastly, if an actual emergency were to occur, the Haz Mat
team would be managing the general population as well, and there could be many more people who need to be
decontaminated. In a real decontamination scenario, it is questionable if people with SCI would get the attention they
received during this drill.
Conclusions
Historically, decontamination plans have been designed to meet OSHA and safety standards. The findings of this study
call for a paradigm shift. Plan designs should meet not only requirements for the safety of the decontamination staff, but
should also consider the needs of the participants. By including people with SCI in our planning and drill procedures, we
have gained a “
user’
s perspective,”as well as been able to take advantage of their problem-solving skills. This has
allowed us to enhance our service delivery. We have learned that simple adaptations, through training and equipment,
vastly improve the quality of service offered to patients in disaster situations.
- 22 -
The data we have collected from this project has allowed Sinai Health System to build our capacity to deliver
decontamination procedures to individuals with SCI. Furthermore, the enhancements we are making to our emergency
preparedness plans have a universal benefit; they enhance our existing plans and make them more suitable for all
individuals. We encourage other hospitals and organizations to include people with SCI in their emergency preparedness
planning and drills.
Acknowledgements: We would like to thank the Chicago Department of Public Health and the Office of the Assistant
Secretary for Preparedness and Response for the funding of this project. We are also grateful for the participation of, and
feedback from, the individuals with SCI; this drill would not have been possible without them.
For more information regarding this study, please contact Kimberly Taylor, Manager of Program Development,
Evaluation and Research, Extended Services and Deaf Access Program, Schwab Rehabilitation Hospital, at
taykim@sinai.org or 773.522.2010.
References
Davis, E. & Mincin, J. (2007). Nobody Left Behind: Incorporating Special Needs Populations into Emergency Planning
and Exercises. Retrieved June 13, 2007 from http://www.nobodyleftbehind2.org.
Davis, E. & Sutherland, D. (2005). It’
s the Law: Preparedness and People with Disabilities. International Association of
Emergency Managers Bulletin, 22, 13-14.
Fox, M. H., White, G. W., Rooney, C., & Rowland, J. L. (2007). “
Disaster Preparedness and Response for Persons with
Mobility Impairments: Results from the University of Kansas Nobody Left Behind Study,”Journal of Disability
Policy Studies, 17, 196-205.
Glaser, B. G. (1965). The Constant Comparative Method of Qualitative Analysis. Social Problems, 12, 436-45.
Horton D. K., Berkowitz, Z., & Kaye, W. E. (2003). Secondary Contamination of Emergency Department Personnel
from Hazardous Materials Events, 1995-2001. American Journal of Emergency Medicine, 21, 28-33.
United States Department of Homeland Security, Interagency Coordinating Council on Emergency Preparedness and
Individuals with Disabilities. (2006). Emergency Preparedness NOW Spotlight Interview –John Hager, U.S.
- 23 -
Department of Education, Assistant Secretary. Emergency Preparedness NOW, 2. Retrieved February 29, 2008 from
http://ems-mx4.sradev.com/ dhs/test/spring2006/ interview.htm.
Kallies, J. I. (2005). Disaster Services and “Special Needs”: Term of Art or Meaningless Term? Retrieved February 28,
2008 from http://www2.ku.edu/%7Errtcpbs/findings/pdfs/ SpecialsNeeds.pdf.
Kallies, J. I. (2005) Nobody Left Behind: Why and How to Include People with Disabilities in Your Emergency Planning
Process? Retrieved January 7, 2008 from
http://www.nobodyleftbehind2.org/findings/why_and_how_to_include_all.shtml.
Kendall-Tackett, K. & Mona, L. (2005). The Impact of 9/11 on People with Disabilities: Committee on Disability Issues
in Psychology. Presentation at the American Psychological Association Conference, Washington, D.C., 2005.
Macintyre, A. G., Christopher, G. W., Eitzen, E., Gum, R., Weir, S., & DeAtley, C. et al. (2000). Weapons of Mass
Destruction Events with Contaminated Casualties. Journal of the American Medical Association, 4, 261-68.
McLaughlin, S. (2006). Getting Ready: New JCAHO Standard Aims to Test Hospital Emergency Response. Health
Facilities Management, 19, 49-52.
National Council on Disability. (2005). Saving Lives: Including People with Disabilities in Emergency Planning.
Retrieved June 13, 2007 from http://www.ncd.gov/newsroom/ publications/ 2005/ saving_lives.htm.
Nocera, A., Levitin, H. W., & Hilton, J. M. N. (2000). Dangerous Bodies: A Case of Fatal Aluminum Phosphide
Poisoning. Medical Journal of Australia, 173, 133-35.
Occupational Safety and Health Administration. (2005). OSHA Best Practices for Hospital-Based First Receivers of
Victims from Mass Casualty Incidents Involving the Release of Hazardous Substances. Retrieved February 28, 2008
from http://www.osha.gov/dts/osta/bestpractices/ firstreceivers_hospital.pdf.
Okumura, T., K. Suzuki, Fukuda, A., Kohama, A., Takaus, N. & Ishimatsu, S. (1998). The Tokyo Subway Sarin Attack:
Disaster Management, Part 2: Healthcare Facility Response. Academy of Emergency Medicine, 5, 618-24.
Pound, P. (2002). Governor’
s Committee Survey: Emergency Preparedness for People with Disabilities. Retrieved June
18, 2007 from http://www.governor.state.tx.us/ divisions/disabilities/resources/ada/emergency_preparedness.
Rooney, C. & White, G. W. (2007). Consumer Perspective: Narrative Analysis of a Disaster Preparedness and
Emergency Response Survey from Persons with Mobility Impairments. Journal of Disability Policy Studies, 17,
206-15.
Sinai Health System. (2006). Hazardous Material Casualty Response Plan. Chicago, IL.
- 24 -
White, G., Fox, M., Rowland, J., Rooney, C., & Aldana, S. (2004). Nobody Left Behind: Investigating Disaster
Preparedness and Response for People with Disabilities. Power Point presentation at the National Advisory Board
Meeting, Lawrence, Kansas, May 24. Retrieved June 18, 2007, from http://www.rtcil.org/resources.htm.
Kimberly Taylor, MA, is the Manager of Program Development, Evaluation & Research for Extended Services and the
Deaf Access Program at Schwab Rehabilitation Hospital in Chicago, Illinois.
Kristin Balfanz-Vertiz, MSW, is the Director of Extended Services and the Deaf Access Program at Schwab
Rehabilitation Hospital in Chicago, Illinois.
Rob Humrickhouse is the Assistant Vice President, Risk Management and Regulatory Compliance, and the Chief Safety
Officer for Sinai Health System in Chicago, IL.
Anjali Truitt is the Coordinator of Health Education for Extended Services at Schwab Rehabilitation Hospital in
Chicago, Illinois.
- 25 -
Feature Article
The RAP in Rehabilitation: The Family Conference in Practice
Patricia Fronek
Abstract
The family conference is a common occurrence in many medical and community settings, yet there is limited literature
concerning its practice particularly in relation to rehabilitation. The function and process of conferences are often based
on practice wisdom and tradition and are informed by the particular medical condition or disability the conference
attempts to address. There are mixed reports concerning the level of participation and satisfaction of participants, that is,
the client, family members and professionals, in conferences, and few related to the capacity of conferences to meet
intended goals. The purpose of this paper is to review the current literature concerning family conferences and discuss its
application to one practice setting.
In one spinal injuries unit, a quality review that drew on available evidence concerning the purpose and
functions of family conferences has prompted a number of practice improvements in two stages. Most recently the
“
family conference”has been renamed “
RAP”(Rehabilitation and Planning) Conference that more properly reflects its
purpose and functions. Preparatory and education strategies have been developed for participating professionals and
improved client preparation has been supported through the provision of complementary information provision methods.
The Literature
The Family Conference
The family conference is used as a means of facilitating communication and planning between professionals, clients and
their families in a variety of clinical and community settings (Fineberg, 2005; Fronek, 2005; Hansen, Cornish, & Kaysar,
1998; Kushner & Meyer, 1988; Kushner, Meyer, & Hansen, 1989; Kushner et al., 1986; Meyer, Schneid, & Craigie,
1989). The way family conferences are conducted tend to be informed by philosophies espoused in the specialty areas in
which they are set (Doherty & Baird, 1986; Neto & Trindade, 2007). Family conferences conducted in primary care,
child protection, mental health, and medical settings such as intensive and palliative care, dominate the literature (Curtis
et al., 2002; Curtis, Engleberg, Wenrich, & Shannin, 2005; McDonagh et al., 2004; Neto & Trindade, 2007; Revans,
- 26 -
2007; Stapleton, Engleberg, Wenrich, Goss, & Curtis, 2006). There is little agreement, however, across sectors as to
what constitutes a family conference, its purpose and whose needs these conferences seek to meet (Fineberg, 2005;
Fronek, 2005). In some settings, the family conference is considered a therapeutic intervention while in others it seems
to serve the purpose of communicating information from treating teams to family members in the absence of the person
being treated (Hansen et al., 1998; L'Abate, 1981; Marchand & Kushner, 1997). This is particularly the case when
conducted in intensive care units in relation to end of life planning (Lautrette, Ciroldi, Ksibi, & Azouley, 2006; Stapleton
et al., 2006). Other functions identified in the literature include clarifying misinformation, gaining an understanding of
family interrelationships, forming relationships with family members, airing concerns, delivering bad news, problemsolving, negotiation, decision-making, and discharge planning (Fineberg, 2005; Hansen et al., 1998).
There is a paucity of evidence-based information regarding the best way to conduct family conferences (Curtis
et al., 2002; Efraimsson, Sandman, Hyden, & Rasmussen, 2004; Moneymaker, 2005; Stapleton et al., 2006). At the
coalface, however, the purpose and process of the family conference is often linked to practice grounded in tradition
rather than best practice evidence and clarity of purpose. It is therefore understandable that what is written in the
literature about family conferences often does so from particular perspectives such as the general medical practitioner or
intensivist and rarely compares the experiences of different professionals, clients, and family members in family
conferences. When comparisons are made, varying levels of satisfaction between clients, families, and professionals are
reported (Hansen et al., 1998; Stapleton et al., 2006). Hansen et al. (1998) found in a study of family conferences
conducted in a tertiary teaching hospital that participating professionals were generally more satisfied with family
conference processes than were family members. The perspective of the person actually undergoing treatment and about
whom the conference is about is often not reported, at times attributable to the health status of clients in particular health
settings such as intensive care. Very little is actually known about the benefits of the family conference to individuals
and how it is operationalized in practice.
Barriers
Issues of Power
Family conferences are often promoted as spaces where barriers to communication are minimised and clients and their
families are free to voice, hopes, opinions, and concerns. Little is known about how this actually translates into practice.
It is reported on one hand that family conferences empower people and enhance their autonomy while on the other
- 27 -
individuals struggle with group settings, distressing emotions, are described as having “
a tendency towards denial”and
do not understand jargon or complex medical information (Azouley, 2005; Azouley et al., 2000; Hansen et al., 1998;
Lautrette et al., 2006, p 364). In rehabilitation settings, people with spinal cord injuries (SCI) may receive more
education and are therefore more familiar with jargon and technical terms than members of their families (Fronek, 2005).
This familiarity may also be related to the length of rehabilitation. A family conference held closer to admission may
hold more challenges than one held prior to discharge from rehabilitation.
There often appears to be little recognition of the power disparities between professional team members and
clients and families participating in conferences in relation to knowledge, comfort, and the personal crises in which they
find themselves. This imbalance is likely to influence the full participation of clients and their families in family
conference communications. Adherence to theoretical and philosophical concepts such as client participation and the
provision of supportive environments can mask the power disparity that exists in reality and make full participation
difficult for some clients despite the good intentions of the professionals involved (Crisp, 1989; Efraimsson et al., 2004;
Fronek, 2005). Structural barriers and organizational demands such as length of stay, limited options and time pressures
can exacerbate existing power imbalances inherent in health settings (Clemens, 1995; Hansen et al., 1998).
Practitioner Skills
Likewise, assumptions exist regarding participating professionals. It is often assumed that professionals involved in
family conferences possess the skills required to participate effectively in family conferences. It has been suggested that
the type of exchanges that occur in family conferences is sometimes considered “
routine and not demanding a high level
of skill”(Hansen et al., 1998). In reality clients, families, and professionals hold different values, goals, and
expectations (Hansen et al., 1998) which can create tensions and miscommunication. A high level of skill in facilitation,
negotiation, and goal-setting, and practitioner self-awareness is therefore required. Conflict in family conferences is not
uncommon, therefore additional skills of conflict resolution and complaint management is required (Hansen et al., 1998).
Fineberg (2005) highlights that the improvisational nature of participation requires a level of skill not always
taught in the undergraduate education of many disciplines. Professionals from a diverse range of disciplinary
backgrounds and experience frequently receive no specific training or orientation to the family conference process and
the role they are expected to take, nor is the purpose and process necessarily well defined (Curtis et al., 2001; Fineberg,
2005; Marchand & Kushner, 1997). Orientation and training is further constrained by organizational issues such as staff
- 28 -
rotations, attrition, and recruitment. Fineberg (2005) found that an interdisciplinary approach to the education of medical
and social work students specifically in relation to facilitating family conferences in palliative care showed a marked
increase in student confidence in the facilitation role. She highlighted, however, that future research on the impact of
training on clinical practice behaviours, satisfaction with communication and collaboration, and client and family
perceptions of quality of care was required (Fineberg, 2005).
The Family Conference in Rehabilitation
Little is written about the family conference in rehabilitation, particularly in relation to the experiences of people with
SCI, their families, and caregivers. Effective communication with clients with disabilities and their family members is
considered a cornerstone of contemporary rehabilitation. The family conference is therefore a key event. It has been
previously reported that people with SCI who participated in one small observational study appeared to engage in family
conferences as equal and participatory members of the rehabilitation team despite acknowledged power differences and
some negative aspects of team interactions (Fronek, 2005). This was attributed to the recognition and promotion of the
person with a disability as a participatory team member in his or her rehabilitation and education strategies. Participating
persons with a disability understood jargon and other terminology used and, in this study, appeared to accept ownership
of their rehabilitation planning. Family members, in contrast, were reported to be more passive in their family conference
participation. It was concluded that the needs of family members were not necessarily met in the same way during the
family conference. These conclusions, however, are not generalizable and further research is required. The importance
of the behaviour of practitioners in the family conference and the language they used was important in facilitating
communication and creating an environment conducive to the tasks at hand (Fronek, 2005).
The focus of the family conference in rehabilitation differs in a number of ways from family conferences
conducted in other settings. Notably, the philosophical approach on which rehabilitation is based is different; the long
term goal is community reintegration; and relationships between the person with a disability, their families, and
professionals are longer term. In rehabilitation, the focus is on client self-determination where the client is placed in the
central position and promoted as the drivers of their own rehabilitation and decision-making processes. This contrasts to
the medical model, where the expert position of professionals is more pronounced. In medical models, illness,
incapacity, and disease management is the focus with significant attention on the family members who often speak on
behalf of the person receiving treatment. Due to the focus on the person themselves and the varying degrees of
- 29 -
involvement family members have in decision making processes, it has been suggested that the term “
family conference”
as applied to the rehabilitation of people with SCI is perhaps a misnomer and should be renamed to more accurately
reflect the purpose and functions of conferences in rehabilitation settings (Fronek, 2005).
A Practice Example
The way family conferences are conducted in the Queensland Spinal Cord Injuries Service (QSCIS) in Brisbane,
Australia, was reviewed as a quality activity in two stages. In stage one, an extensive literature review was conducted
highlighting a paucity of published literature relating to the family conference in rehabilitation settings and none relating
to people with SCI. A participatory observation study was conducted which informed local practices and quality
improvements were made relating to family conference processes at that time (Fronek, 2005). These included training
for professionals on how to participate effectively in family conferences and feedback relating to the findings of the
study. A number of issues identified in the review were supported by the limited literature available. These were
professional confidence; training and preparedness of participating professionals; and recognition that the purpose and
processes of the family conference were not necessarily mutually understood by professionals, people with SCI and their
family members.
More recently new issues emerged relating to family conferences. Informal feedback from clients undergoing
primary rehabilitation indicated confusion over the purpose and need for family conferences such as “
I don’
t have any
family why do I need a family conference?”
,“
My family do not live in Brisbane so they can’
t come. I don’
t need a
family conference”
. As identified in the earlier research, the name “
family conference”was in discordance with its
functions and was an issue for some clients. These perceptions created barriers to communication and ownership of
overall planning for particular clients. Informal client feedback indicating confusion regarding the purpose and process
of family conferences precipitated action regarding the issues identified (stage two), but not acted on, in the earlier
review. The following actions took place after reviewing the latest literature, the findings of the initial study, and client
feedback.
RAP (Rehabilitation and Planning)
Alternative titles to the ‘
family conference’were explored with clients and practitioners. It was felt the name
‘
Rehabilitation and Planning’conference, providing the acronym RAP, reflected the true purpose and process of
- 30 -
conferences conducted in the rehabilitation setting and would be easy for clients and practitioners to remember. It also
provided an additional layer of meaning as ‘
rap’in a colloquial sense means to talk. The moniker was tested with those
clients who had initially objected to attending a family conference. The same purpose and process was explained to the
clients, however with the new title. Each client had no objections to attending a RAP conference and felt it held personal
relevance for them.
Client Information and Conference Preparation
Client and family member preparation for conferences are delivered verbally. To complement oral information, written
client centred information was developed to assist a person’
s understanding of RAP and to provide concrete ways to
prepare for participation. It has long been recognized that information is better received if delivered in a variety of ways.
Information that is presented verbally is reinforced by information provided in written form (Hoffman & Worral, 2004).
Written material can reduce misinformation, can be shared amongst family members and peers, and reread for
clarification (Bernier, 1993).
The information was provided in pamphlet form and written according to client centred principles. Feedback
from people with spinal cord injuries, their families and professionals was sought to ensure readability and coherence of
the material. This information defined RAP and its goals, outlined expectations and provided concrete ways a person
could prepare for his or her RAP conference encouraging full participation.
Meeting the Needs of Family Members
It appears that family members may not participate in conferences to the same degree as the person with SCI. Further
research is required to ascertain if lesser participation indicates reduced satisfaction, unmet need, and is problematic or
whether it is a reflection of family members’comfort with the injured person taking the lead position in conference
settings. Families experience different adjustment processes and their needs are not necessarily convergent with those of
the person with SCI. Though a range of psychosocial interventions usually take place with family members additional
strategies may be required.
- 31 -
Meeting the Information and Training Needs of Practitioners
The first task in relation to preparing professionals for meaningful family conference engagement was to ensure the core
tenets were understood. The Family Conference Procedure was reviewed and rewritten as a RAP Conference Procedure
based on the literature review and best practice principles. The procedure provided clarity of purpose, process, roles,
responsibilities and expectations of participating practitioners. The purpose of RAP was defined as:
“…for the benefit of people with spinal cord injuries…and their families. The primary purpose of RAP is to allow the
person to review, goal set and lead his or her individualized rehabilitation program as a participatory team member.”
Processes outlined included the facilitation role, expectations of participating professionals, and communication
strategies. Specific communication skills and strategies required for conference participation were outlined in the
procedure. Core competencies of group facilitation skills deemed necessary for the facilitation role, undertaken in this
unit by the social worker in the team, was also detailed. As with Hansen’
s et al (1998) pre- and post-conference
activities were considered as important as activities that occurred within the conference itself, that is, preparation of the
person and his or her family for RAP participation and follow up and review post RAP.
Written orientation material was developed for multidisciplinary practitioners expected to participate in the
RAP Conferences. These guidelines defined RAP and its goals, described the procedure and process and provided
guidance to help practitioners prepare for RAP. These ranged from strategies such as talking to the person not about the
person, differentiating between case presentations for which many practitioners are trained, and dialogue, to the impact
of cultural issues and the use of interpreters on the RAP process.
Training for participation in RAP based on adult learning principles was introduced to the formal inservice
education program. There are benefits to interdisciplinary learning and training must be relevant to practice experience.
There is room for the development of in-depth training strategies that focus on the development of specific skills such as
micro communication skills, goal setting, motivational interviewing techniques, conflict resolution, and group work
skills.
- 32 -
Conclusion
The family conference is a dynamic intervention that is multifocal and complex if the needs of all participants are fully
considered. The family conference is little researched particularly in the area of rehabilitation and practice can be based
on a number of assumptions. A client-centred approach is essential yet this creates opportunities for diverse opinions
and conflicting goals. Practitioners need a range of skills that are not necessarily provided in undergraduate training to
manage this effectively.
In this practice setting, a quality review provided important information regarding how family conferences were
conducted revealing the need for clarity of purpose, practitioner skill development, complementary educational material,
and appropriate naming of the family conference to reflect its purpose. Regular practice-based reviews of family
conference functioning would be useful to prevent complacency and to ensure practitioners new to rehabilitation gain an
understanding of the purpose and processes of family conferences and have opportunity for skill development.
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Azouley, E., Chevret, S., Leleu, G., Pochard, F., Barboteu, M., Adrie, C., et al. (2000). Half the families of intensive care
unit patients experience inadequate communication with physicians. Critical Care Medicine, 28(8), 3044-3049.
Bernier, M. J. (1993). Developing and evaluating printed education materials: A prescriptive model for quality.
Orthopaedic Nursing, 12, 39-46.
Clemens, E. (1995). Multiple perceptions of discharge planning in one urban hospital. Health and Social Work, 24, 254261.
Crisp, R. (1989). Consumer participation in rehabilitation: An unresolved issue. Australian Social Work, 42(1), 39-42.
Curtis, J., Donald, P., Shannon, S., Treece, P., Engleberg, R., & Rubenfield, G. (2001). The family conference as a focus
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Fineberg, I. C. (2005). Preparing professionals for family conferences in palliative care: Evaluation results of an
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Fronek, P. (2005). Insights from the family conference: Observations in rehabilitation. Australian Social Work, 58(4),
395-406.
Hansen, P., Cornish, P., & Kaysar, K. (1998). Family conferences as forums for decision making in hospital settings.
Social Work in Health Care, 27(3), 57-74.
Hoffman, T., & Worral, L. (2004). Designing effective written health education materials: Considerations for health
professionals. Disability & Rehabilitation, 26(19), 1166-1173.
Kushner, K., & Meyer, D. (1988). Family physicians' perceptions of the family conference. The Hournal of Family
Practice, 28(1), 65-68.
Kushner, K., Meyer, D., & Hansen, J. P. (1989). Patients' attitudes towards physician involvement in family conferences.
The Journal of Family Practice, 28(1), 73-78.
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want? The Journal of Family Practice, 23(5), 463-467.
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Lautrette, A., Ciroldi, M., Ksibi, H., & Azouley, E. (2006). End-of-life family conferences: Rooted in the evidence.
Critical Care Medicine, 34(11), 364-372.
Marchand, L., & Kushner, K. (1997). Getting to the heart of the family conference: The residents' perspective. Family
Systems and Health, 15(3), 305-319.
McDonagh, J., Elliott, T., Engleberg, R., Treece, P., Shannon, S., Rubenfield, G., et al. (2004). Family satisfaction with
family conferences about end of life care in the intensive care unit: Increased proportion of family speech is
associated with increased satisfaction. Critical Care Medicine, 32(7), 1484-1488.
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Meyer, D. L., Schneid, J. A., & Craigie, F. C. (1989). Family conferences: reasons, level of involvement and perceived
usefulness. Journal of Family Practice, 29(4), 401-405.
Moneymaker, K. (2005). The Family Conference. Journal of Palliative Medicine, 8(1), 157.
Neto, I. G., & Trindade, N. (2007). Family meetings as a means of support for patients. European Journal of Palliative
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Patricia Fronek, Queensland Spinal Cord Injuries Service, Princess Alexandra Hospital, Woolloongabba
Qld, Australia.
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President’
s Message
A New Beginning
Lester Butt, PhD
As I end my final term as President of AASCIPSW, I find myself with markedly
mixed feelings. . .a combination of excitement mixed with sadness. As always, I have
been extraordinarily privileged to have had the opportunity to again serve the
membership.
This term has been fraught with significant challenges, struggles, time commitment, and
energy. As most of you are undoubtedly aware, four representatives from AASCIPSW have been
involved in the Strategic Planning Council (SPC), which is comprised of equal numbers from the American Association
of Spinal Cord Injury Nurses, American Paraplegia Society, and the Therapy Leadership Council. Our representatives
have included Terrie Price, Helen Bosshart, Jason Mask, and myself. All 16 members of the SPC are fiercely committed
to the longevity of our collective mission of serving those with spinal cord injury through education, research, and
provision of the highest quality Annual Conference. The SPC has faced unprecedented decisions in light of the changing
landscape of financial support by United Spinal Association. Since our modest beginning in 1986, Eastern Paralyzed
Association, with its metamorphosis into United Spinal Association, has provided unique and unparalleled support, both
financial and administratively to the Tri-Associations (AASCIPSW, APS, and AASCIN). Our gratitude to United Spinal
Association is boundless in that no Association has had the magnitude and luxury of such support. Our warmest feelings
and thanks are extended to Jim Peters, our founding benefactor; Stephen Sofer, our long-time association manager; Sara
Lerman, our present association manager; Paul J. Tobin, United Spinal Association’
s president and CEO; and, of course,
Vivian Beyda, United Spinal Association senior vice president of Research and Education. As all are poignantly aware,
our longest standing relationship has been with Dr. Beyda. She has served us tirelessly from our inception. Her
devotion and unbounded energy for our Association has been peerless.
The next chapter in our Association’
s history is intricately connected to Paralyzed Veterans of America.
Through the work, generosity, and support of PVA personnel, Homer Townsend, executive director; Maurice Jordan,
associate executive director; Thomas Stripling, director of Education and Research; our security and health are
preserved. PVA assistance with both the intricacies of the Annual Conference as well as initial administrative support is
in tact. This transition will commence 10.1.08. It is the hope of the SPC and PVA that will be ultimately be in a position
to hire an independent management company while still allowing PVA to assist in the support of our conference. This
will allow us heightened autonomy and self-direction. Additionally, it has been decided by the SPC that we will have a
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fully merged Academy of Spinal Cord Injury Professionals (ASCIP) no later than 10.1.09. The SPC is in the process,
with the assistance of pro bono attorneys with expertise in non-profit corporations in Washington, D.C. and San
Francisco, to further develop and refine the details of the Academy’
s Bylaws. It is our desire to have an overall
Governance Board of the Academy of Spinal Cord Injury Professionals that will have equal representation from our
present disciplines, (e.g., AASCIPSW, AASCIN, APS, and the TLC). In order to ensure that the specialized needs of
each of the aforementioned groups will possess a distinct voice, the ASCIP will possess respective Councils that will
provide input to the Governance Board. To the best of my knowledge, when this configuration is complete, it will
evidence the only SCI group of its type. Specifically the Academy of Spinal Cord Injury Professionals will reflect a
truly multidisciplinary cadre of professionals with an overall Governance Board that mandates equality in terms of
discipline numbers.
As previously stated, this is a dramatic and exciting time of change. That said, I adamantly hold that it is
impossible to welcome this new chapter for AASCIPSW until we genuinely say goodbye to our past. It is in this spirit
that we honor and demonstrate ultimate gratitude toward United Spinal Association. Without their vision, support, and
devotion, we would never be in the position to contemporarily grow and thrive.
Again, thank you for the opportunity to give back to this wonderful organization comprised of such a fabulous
collection of professionals. Some of my best friends have come from my involvement with AASCIPSW. As a result,
my world is all the richer.
Fond regards,
Lester Butt, PhD, ABPP
Director of the Department of Psychology, Craig Hospital
President, American Association of Spinal Cord Injury Psychologists and Social Workers
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News Briefs
Irmo Marini, PhD
State Budgets Cut Disability Funding
The Associated Press recently reviewed the intended state budget cuts for various programs
and predicts that hundreds of thousands of people with disabilities who rely on state health
care will be negatively impacted. Over 10 million persons are predicted to lose access to
prescription brand-name drugs, medical specialists, and dental care. California alone is
expected to cut more than $1 billion in payments to physicians who care for the more than 6.5
million Medicaid patients. Andrew Imperato, president and CEO of the American Association of People with Disabilities
noted how a number of governors in recent years have essentially gutted their state Medicaid programs. Imperato stated
that “
when there is a fiscal crunch, it gives governors, state legislatures, Congress, and presidents an excuse to do stuff
they may have wanted to do anyway.”
Underground Railroad of the 21st Century
In the May issue of New Mobility, Richard Holicky’
s article, “
Escaping the Nursing Home”
, describes the difficulty
persons with disabilities have in attempting to leave nursing homes for re-entry into the community. He writes that the
main reasons people end up in nursing homes include the inability to find accessible housing, difficulty in finding
affordable and reliable home health care services, and convalescence after surgery with no family support to take the
individual home. The Underground Railroad is a small group who assist persons with physical disabilities in nursing
homes in Tennessee to get out and into accessible housing with personal care assistance in the Denver, Colorado area.
The Tennessee nursing home industry and its lobbyists are described as having a “
death grip”on service provisions for
persons with physical impairments who are unable to care for themselves, eating up 98% of all state funding and leaving
little to go toward the provision of personal care assistance in the home.
Holicky cites the hurdles people experience trying to get established outside of the nursing home once they have
been admitted. Nursing homes are not set up to transition people out, therefore, getting out is something that must be
initiated and coordinated by others. In Memphis, the Center for Independent Living (MCIL) has been instrumental in
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assisting numerous persons with physical disabilities to transition out of Tennessee and into Colorado. Holicky cites
only 24 subsidized accessible wheelchair apartment units in the entire Memphis area.
Devoe Mack’
s story is typical one. His C-5 spinal cord injury and home healthcare that steadily became worse
in frequency and reliability, left him with no choice but to go into a nursing home. Instrumental in getting Mack and
others in his situation out of the nursing homes is Randy Alexander of MCIL, and in Denver, Barry Rosenberg, who runs
a home health agency. MCIL paid Mack’
s airfare and gave him a couple hundred dollars, while Rosenberg assisted in
setting up a place to stay, food stamps, and personal assistance services until Medicaid in Colorado was initiated.
Rosenberg owns 12 apartments, and its renters all share personal care assistance. MCIL also coordinates with Latonya
Reeves at the Atlantis CIL in Denver. Reeves was the first Underground Railroad passenger years ago.
Other instrumental people in the underground are Bill Bass who works for the Disability Center for Independent
Living in Denver, and his counterpart Rick Famiglietti of West Haven, Connecticut, who coordinate the services and set
up for individuals in nursing homes to transition into the community. Bass, Alexander, and Famiglietti have developed
checklist transition guidelines for consumers in preparation for successfully leaving a nursing home. It’
s unfortunate that
most state legislatures still bend to the will of the nursing home lobbyists to what many disability advocates call
“
enslaving”persons with disabilities in nursing homes. Further information may be obtained by contacting the MCIL.
Irmo Marini, PhD, is an assistant professor with the Rehabilitation Counseling Department at the
University of Texas–
Pan American in Edinburg, Texas.
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Commentary
Posttraumatic Growth Following Spinal Cord Injury
Shenell D. Evans, BS––Jackson State University; and Samuel T. Gontkovsky, PsyD––Methodist
Rehabilitation Center
Individuals face a host of physiological and psychological sequelae following spinal cord injury (SCI). One major
challenge involves adjusting and adapting to life as an individual living with the disability. Individuals with SCI are at
risk for substance abuse, depression, anxiety, posttraumatic stress symptoms, and suicide. Although recovery from SCI
can be very stressful, even traumatic, individuals may report psychological growth as well as distress (Pollard &
Kennedy, 2007; McMillen & Cook, 2003). Empirical investigations of the perception of benefits and meaning following
trauma and adversity have burgeoned over the past decade. Labels applied to such outcomes include posttraumatic
growth, perceived benefits, positive by-products, thriving, stress-related growth, benefit-finding, and adversarial growth.
Posttraumatic growth and benefit-finding are used interchangeably in this review.
Posttraumatic Growth
Posttraumatic growth (PTG; Tedeschi & Calhoun, 1996, Calhoun & Tedeschi, 2006) refers to positive psychological
change individuals may experience in the aftermath of challenging or traumatic events. Extending beyond successful
recovery to pre-trauma functioning (i.e., resilience; Tedeschi & Kilmer, 2005; Calhoun & Tedeschi, 2006), posttraumatic
growth occurs as an individual struggles through the process of evaluating, modifying, and constructing basic
assumptions about life and the world in the aftermath of traumatic experiences (Calhoun & Tedeschi, 1998; Calhoun &
Tedeschi, 2006). According to Tedeschi and Kilmer (2005), posttraumatic growth “
emphasizes that transformative
positive changes (a) occur most distinctively in the aftermath of trauma rather than during lower level stress, (b) appear
to go beyond illusion, (c) are experienced as an outcome rather than a coping mechanism, and (d) require a shattering of
basic assumptions about one’
s life that traumas provide but lower level stress does not”(p. 233). The process of PTG
involves rumination and cognitive engagement of the event (Calhoun & Tedeschi, 2006). While rumination may involve
intrusive thoughts, the kind of rumination linked with PTG is reflective and represents deliberate attempts to cope, find
meaning, or gain an understanding of life and the world.
The most commonly used standardized instrument for assessing this change is the 21-item Posttraumatic
Growth Inventory (PTGI; Tedeschi & Calhoun, 1996). It was developed to examine benefit-finding by men and women
- 40 -
of different ages who have experienced diverse traumatic events in various contexts. With items derived from three
broad domains of growth: changes in self, in relating to others, and in philosophy of life, the PTGI evaluates changes
across five factors including Personal Strength, Relating to Others, Appreciation of Life, Spiritual Change, and New
Possibilities. Statistically, the instrument (α= .90), as well as the factors, showed good internal consistency (Personal
Strength, α= .72; Relating to Others, α= .85; Appreciation of Life, α= .67; New Possibilities, α= .84; Spiritual Change,
α= .85). Among the initial validation sample of university students who experienced various traumatic events, the PTGI
was generally unrelated to social desirability, neuroticism, and amount of time since trauma (range = 6 months to 4
years). Women tended to report more growth than men, a trend that has persisted in subsequent research. Also, the
personality variables of extraversion, openness to experience, agreeableness, conscientiousness, and optimism were
consistently associated with reports of benefit-finding (Tedeschi & Calhoun, 1996).
The PTGI has been criticized for lacking negatively-worded responses. Participants indicate the extent to which
they have experienced the change associated with each item. The 6-point Likert scale ranges from 0 = no change to 5 =
a great degree, for example, “
I did not experience this change as a result of my crisis,”through, “
I experienced this
change to a very great degree as a result of my crisis”
. Criticisms of the scale also encompass the potential for reports of
“
pseudo-growth”(Lechner & Antoni, 2004, p. 39) or positive response bias, that is, the self-protective endorsement of
changes the respondent has not experienced. Indeed, clinicians should be cognizant that reports of growth might be more
representative of denial or positively biased self-presentation than growth. Empirical research, however, does not
support this view, as the PTGI is unrelated to social desirability (Tedeschi & Calhoun, 1996), PTG is often reported in
addition to distress symptoms (Calhoun & Tedeschi, 2006; Linley & Joseph, 2004), growth reports appear to be
underreported (Smith & Cook, 2004), and proxy reports of growth are correlated with survivor reports (McMillen &
Cook, 2003). Moreover, the PTGI was developed for the specific purpose of investigating the possibility of experiencing
positive life changes after trauma.
There are many correlates and predictors of PTG. Linley and Joseph (2004) conducted a meta-analytic review
of empirical research studies that utilized various measures, both closed and open-ended, of adversarial, or posttraumatic,
growth. Several variables were shown to be significantly associated with posttraumatic growth: sociodemographic
variables (age [positive and negative], education, gender [female], and income); coping (emotion-focused, negative
religious, positive religious, problem focused); religion (existential openness, intrinsic religiousness, religious
participation); social support (received and satisfaction); personality (agreeableness, conscientiousness, extraversion,
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hardiness, neuroticism [negative], openness to experience, optimism, self-efficacy, self-esteem); cognitive appraisal
(awareness, control, harm, threat); cognitive processing; and affect (positive and negative [negative]). Posttraumatic
growth is a plausible, though not inevitable outcome that may assist in adjustment and adaptation to life after trauma
(Tedeschi & Calhoun, 2004). Individuals who have survived highly challenging events may experience distress such as
depression and anxiety, growth, or both (Cordova et al., 2007; Tedeschi & Calhoun, 1996; Linley & Joseph, 2004).
Tedeschi and Calhoun (1996) noted that, “
when people perceive benefits, they do not appear to deny the difficulties”(p.
468).
Posttraumatic Growth in Various Medical Contexts
Stanton, Bower, and Low (2006) examined the body of literature investigating the correlates of benefit-finding among
individuals with cancer. Correlates of PTG among cancer patients include many categories of variables:
sociodemographic (i.e., higher socioeconomic status, ethnic minority status, and younger age), coping (i.e., approachoriented, problem solving, emotional expression, and seeking social support), social (i.e., disclosure of cancer experience
with others), and personality (i.e., self-esteem, self-efficacy, and incentive sensitivity) variables, as well as characteristics
of the stressor (i.e., perceived threat, mortality salience, and more severe disease). Also, psychological factors (i.e.,
positive affect, psychological well-being) and biomedical markers (i.e., reduced serum cortisol level, increased
lymphocyte proliferation, and decreased pain; Lechner & Antoni, 2004; Stanton et al., 2006) were correlated with
benefit-finding. Gender differences (i.e., women tend to report more growth) were not supported. Recently diagnosed
patients, as well as those with advanced disease, are less likely to report growth than long-term survivors. The evidence
was inconclusive with regard to the relationship between PTG and psychological distress. Overall, Stanton et al. (2006)
concluded that greater perceived stressfulness of cancer and intentional engagement with the stressor are significant
prerequisite conditions for benefit-finding among cancer patients.
Some patients may not perceive their experiences as traumatic. Cordova et al. (2007) reported that 52% of their
sample of breast cancer survivors described their experiences as traumatic. These individuals also reported more
posttraumatic stress symptoms and PTG. The results support previous findings showing that greater perceived threat or
severity is associated with more reports of benefit-finding.
- 42 -
Lechner and Antoni’
s (2004) randomized trial among women with early-stage breast cancer indicated that
women in a 10-week cognitive-behavioral stress management (CBSM) intervention reported and maintained increases in
PTG post-intervention and over two follow-up assessments. The CBSM intervention was designed to improve
participants’understanding and awareness of stress, coping strategies, relaxation strategies, emotional expression, social
support, self-image, and understanding of their illness. There were no significant changes in benefit-finding for the
control group, who attended a 1-day stress management seminar. This was the first randomized clinical trial that
reported increases in PTG.
Within a sample of predominantly Caucasian sexually active men diagnosed with HIV/AIDS, fifty-nine percent
(59%) reported experiencing changes in the following areas since diagnosis: changes in health behaviors, belief in an
afterlife, altruistic behavior, feeling of control, sense of community and belonging, and focus on the here-and-now
(Milam, 2004). Negative associations (higher PTG associated with lower distress) were found between posttraumatic
growth and measures of psychological distress. Higher PTGI scores were associated with lower levels of cigarette,
alcohol, and illicit drug use. Benefit-finding was also associated with physical activity/exercise and eating a healthy diet.
Posttraumatic Growth & Spinal Cord Injury
McMillen and Cook (2003) investigated whether individuals with SCI report perceived benefits along eight factors of the
Perceived Benefit Scales (PBS; McMillen & Fisher, 1998): increased self-efficacy, increased faith in people, increased
compassion, increased spirituality, increased community closeness, increased family closeness, lifestyle changes, and
material gain. The sample included 42 adults (34 men, 8 women; Mean age of 43.29 years, SD = 13.86) who were
interviewed 18-36 months after their injury. The predominantly Caucasian subjects (n = 30) were mostly injured via
motor vehicle accidents (n = 26) followed by gunshots (n = 8) and falls (n = 8). Proxy or collaborator reports were
obtained from one source per participant who was familiar with the respondent prior to injury (n = 42; 11 spouses, 12
relatives, 19 friends).
Seventy-nine percent of the participants with SCI reported a positive outcome from their injury, endorsing
increased family closeness and increased compassion more often than material gains and increased community
closeness. Proxy and participant reports were positively correlated on increased spirituality, material gain, and increased
community closeness, although proxy ratings of community closeness were greater than those ratings from the
- 43 -
respondents. Gains were reported in emotional intimacy with partner among individuals who were married pre- and
post-injury (8; 44%). The majority of the participants reported decreases in the following behaviors post-injury: drinking
alcohol (11; 70%), using illicit drugs (11; 60%), and partner conflict (10; 56%). Considering the risk and rates of alcohol
use found among individuals with SCI, McMillen and Cook (2003) suggested that the post-injury adjustment period
might be an advantageous time to change substance abuse patterns.
A longitudinal analysis of individuals with SCI examined the predictive relationship between emotional impact,
coping strategies, and posttraumatic growth 12-weeks and 10-years post-injury (Pollard & Kennedy, 2007). Participants
(n = 37, 30 men and 7 women; mean age of 40.9, range 25-73 years) were recruited for this extended analysis after
completing the initial two-year investigation of the same constructs (Kennedy et al., 2000). Pollard and Kennedy (2007)
reported that emotional distress remained relatively consistent over time with those clinically significant symptoms
found at week 12 more likely to be displayed at year 10. Maladaptive coping strategies such as denial, substance abuse
ideation, and behavioral disengagement, were also relatively stable over time as were adaptive strategies. Acceptance,
problem-focused and adaptive coping strategies were frequently used. With regard to PTG, the range of scores varied
greatly, with more positive changes reported on the Personal Strength factor and fewer changes on the Spiritual Change
factor. Pollard and Kennedy (2007) stressed the importance of early treatment of clinically significant distress symptoms
because they usually persist over time if left untreated.
Other factors contributing to the benefit-finding and growth include the continuous or intermittent experience of
pain. Budh and Osteraker (2007) reported that patients with SCI and continuous pain had lower rates of satisfaction with
their life, family, financial condition, and social contacts and functioning. Intermittent pain was associated with
perceived negative impact on finances and social functioning. Furthermore, individuals might experience both pain and
mood problems, that is, severe anxiety and depression, as well as sleep disturbances.
Implications for Research and Practice
Although individuals with spinal cord injuries are at risk for many negative psychological, physical, and social problems,
some individuals are able to concurrently engage in the process of benefit-finding post-injury. This process involves
deliberate reflective rumination and cognitive engagement with the event and helps people with SCI create meaning in
- 44 -
the aftermath of trauma (Calhoun & Tedeschi, 2006; Calhoun & Tedeschi, 1998). Promising results have been found
among other clinical populations such as cancer and HIV/AIDS infections. Among patients with SCI, studies indicate
that early psychological distress and maladaptive coping strategies, if left untreated, are likely to persist over time. On
the positive side, adaptive, approach-oriented strategies are also likely to remain stable when displayed soon after injury.
Interventions designed for trauma survivors should aim to decrease distress and facilitate posttraumatic growth.
Linley and Joseph (2004) suggested that clinical interventions designed to decrease distress might not facilitate growth,
whereas interventions designed to facilitate growth may alleviate distress. Such facilitation requires a willingness to
engage and explore with the injured person spiritual or religious issues, treatment of their reports of growth as valid
rather than illusions, and sensitivity to their readiness to consider possible growth that might have occurred as a result of
their struggle with the event (Calhoun & Tedeschi, 1998). The clinician’
s role primarily involves guiding patients
through the process of re-evaluating, modifying, and reconstructing their basic assumptions of the world (Calhoun &
Tedeschi, 1998; Linley & Joseph, 2004), and our greater understanding of positive outcomes after SCI will facilitate the
development of clinical interventions in promoting safe health practices and psychological well-being among survivors.
References
Budh, C. N., & Osteraker, A. L. (2007) Life satisfaction in individuals with spinal cord injury
and pain. Clinical Rehabilitation, 21, 89-96.
Calhoun, L.G., & Tedeschi, R. G. (1998). Beyond recovery from trauma: Implications for clinical practice and research.
Journal of Social Work Issues, 54, 357-371.
Calhoun, L.G., & Tedeschi, R. G. (2006). The foundations of posttraumatic growth: An expanded framework. In L. G.
Calhoun, & R. G. Tedeschi (Eds.), Handbook of posttraumatic growth: Research and practice (pp. 138–
175).
Mahwah, NJ: Lawrence Erlbaum Associates Publishers.
Cordova, M. J., Davis, J. G., Golant, M., Kronenwetter, C., Chang, V., & Spiegel, D. (2007). Breast cancer as trauma:
Posttraumatic stress and posttraumatic growth. Journal of Clinical Psychology in Medical Settings, 14, 308319.
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Kennedy, P., Marsh, N., Lowe, R., Grey, N., Short, E., & Rogers, B. (2000). A longitudinal analysis of psychological
impact and coping strategies following spinal cord injury. British Journal of Health Psychology, 5, 157–
172.
Lechner, S. C., & Antoni, M. H. (2004). Posttraumatic growth and group-based interventions for persons dealing with
cancer: What have we learned so far? Psychological Inquiry, 15, 35-41.
Linley, P. A., & Joseph, S. (2004). Positive change following trauma and adversity: A review. Journal of Traumatic
Stress, 17, 11-21.
McMillen, J. C., & Cook, C. L. (2003). The positive by-products of spinal cord injury and their correlates. Rehabilitation
Psychology, 48, 77-85.
McMillen, J. C., & Fisher, R. (1998). The Perceived Benefit Scales: Measuring perceived positive life changes following
negative life events, Social Work Research, 22, 173–
187.
Milam, J. E. (2004). Posttraumatic growth among HIV/AIDS patients. Journal of Applied Social Psychology, 34, 23532376.
Pollard, C., & Kennedy, P. (2007). A longitudinal analysis of emotional impact, coping strategies and post-traumatic
psychological growth following spinal cord injury: A 10-year review. British Journal of Health Psychology,
12, 347-362.
Smith, S. G., & Cook, S. L. (2004). Are reports of posttraumatic growth positively biased? Journal of Traumatic Stress,
17, 353-358.
Stanton, A. L., Bower, J. E., & Low, C. A. (2006). Posttraumatic growth after cancer. In L. G. Calhoun, & R. G.
Tedeschi (Eds.), Handbook of posttraumatic growth: Research and practice (pp. 138–175). Mahwah, NJ:
Lawrence Erlbaum Associates Publishers
Tedeschi, R. G., & Calhoun, L. G. (1996). The Posttraumatic growth inventory: Measuring the positive legacy of
trauma. Journal of Traumatic Stress, 9, 455-471.
Tedeschi, R. G., & Calhoun, L. G. (2004). Posttraumatic growth: Conceptual foundations and empirical evidence.
Psychological Inquiry, 15, 1-18.
Tedeschi, R. G., & Kilmer, R. P. (2005). Assessing strengths, resilience, and growth to guide clinical
interventions. Professional Psychology: Research & Practice, 36, 260-237.
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Selected Abstracts from the 2007 AASCIPSW Conference
207 Traumatic Grief as a Result of Pediatric Spinal Cord Injury
Heather F. Russell, PhD
Pediatric spinal cord injury can result in childhood traumatic grief, a condition that can affect children’
s development,
relationships, achievement and later effectiveness in life if not treated or otherwise resolved. Children who experience a
spinal cord injury under very unexpected, frightening, traumatic circumstances may develop symptoms of posttraumatic
stress and other trauma symptoms that can interfere with their ability to progress through the typical grief tasks because
they are stuck on the traumatic aspects of the loss of function and/or mode of injury. A child who receives a spinal cord
injury may experience a grief reaction and a traumatic reaction as a result and each of these reactions requires its own
treatment approach. The goals of treatment for the trauma reaction are to decrease the child’
s trauma focused word view
and to teach the child ways to cope with scary thoughts so that he or she can move through the grief process. These goals
are met by guiding the child through the following steps: psychoeducation, affect expression, stress management skills,
cognitive affect regulation, trauma narrative and cognitive reprocessing. After this process is completed, the grief
symptoms are addressed through communicating about the loss, mourning the loss, acknowledging ambivalent feelings,
preserving positive memories, redefining behavior, committing to new behaviors, making meaning, reviewing the
evolution of grief and termination. It is also important to note that the caregivers and other family members may be
experiencing their own reactions to this traumatic event and therefore may also require some support/treatment. In
summary, there are effective treatments for children and their families who are experiencing traumatic grief, therefore it
is essential for professionals who are working with these individuals to recognize its signs and symptoms and to provide
treatment/referrals as appropriate.
Objectives
•To understand the concept of traumatic grief
•To recognize signs and symptoms of traumatic grief
•To be familiar with a form of treatment of traumatic grief as it applies to children
with a spinal cord injury
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P7 The Effect of Nicotine Use on Spinal Cord Injury Pain: A Pilot Study
Elizabeth J. Richardson, MA; J. Scott Richards, PhD, ABPP; T. J. Ness, MD, PhD; Christina V.
Oleson, MD; Beth L. Dinoff, PhD; and James F. Roper, MD
Background & Objective: Chronic pain is a frequently occurring secondary condition of spinal cord injury that can
negatively impact day-to-day functioning in a variety of life domains. Clinical observations of behavioral factors
associated with both pain exacerbation and relief may lead to increased understanding of mechanisms influencing pain
severity and more effective treatments. One such clinical observation is pain exacerbation by smoking. The aim of the
present pilot study was to investigate, in a controlled fashion, the possible pain exacerbating effects of nicotine on
chronic SCI-related neuropathic pain.
Design: Double-blind, placebo controlled cross-over design. Setting: University of Alabama at Birmingham Model SCI
System.
Participants: Three males (ages 40, 42 & 47) with SCI-related chronic pain and who were smokers.
Outcome Measure: Numeric Rating Scale (0-10) pain ratings for usual day-to-day pain levels, 24-hours after
abstinence, and in ten minute intervals across 80 minutes of nicotine and placebo exposure.
Methods: Subjects were asked to refrain from smoking 24 hours prior to initiation of the trial. For each trial, subjects
were given nicotine or placebo gum, randomized by order. Pain ratings were assessed in ten minute intervals.
Results: Average pain for the three subjects at all time points revealed a reduction in pain intensity following 24 hour
abstinence and greater pain intensity in the nicotine condition compared to placebo.
Conclusions: In conjunction with clinical observations, these findings implicate the exacerbating effects of nicotine on
SCI-related neuropathic pain. Helping persons with SCI reduce or stop nicotine use or smoking may aid in pain
reductions or alleviation.
Objectives
•Share research results regarding effects of nicotine use on SCI-related neuropathic pain.
•Aid in elucidating possible factors influencing pain severity among persons with SCI.
•Promote awareness and interest in further examination of possible benefits of helping those with SCI neuropathic pain
to stop or reduce smoking/nicotine use.
Funding Source: Supported by grant #H133N000016 from the National Institute of Disability
and Rehabilitation Research, Office of Special Education and Rehabilitation Services
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P13 Educational Achievement of Adults with Pediatriconset Spinal Cord Injuries
Caroline J. Anderson, PhD; Lawrence C. Vogel, MD; Kathleen M. Chlan, BA; Randal R Betz, MD;
and Craig M McDonald, MD
Objective: One of the goals of initial rehabilitation of children and adolescents who sustain spinal cord injuries (SCI) is
to assure that they return to school as quickly as possible and are able to participate fully. The objective of this study is to
determine the long-term educational achievements of these individuals as they reach adulthood and to determine the
impact that their education has on other adult outcomes.
Design: Cross-sectional follow-up questionnaire
Setting: Community
Methods: Subjects were individuals with SCI sustained at 18 years of age or younger and interviewed at age 24 years or
older. A telephone interview, including a structured questionnaire and standardized measures, was administered. The
primary standardized measures included the Craig Handicap Assessment and Reporting Technique (CHART), the ShortForm-12 (SF-12) measure of perceived health-related quality of life, and the Satisfaction with Life Scale (SWLS).
Results: 353 participants with mean age at injury of 14 years (0-18) and mean age at interview of 27 years (24-37); 64%
male, 56% with tetraplegia. The mean number of years of education was 14 (8-21). 97% had at least a high school degree
and 31% had at least a college degree. There was not a significant difference between males and females in educational
achievement, but those with tetraplegia had a larger percentage (39%) of college graduates than did those with paraplegia
(25%) (p = .016). For both those with tetraplegia and those with paraplegia, higher education was significantly
associated (p < .05) with greater employment, income, and community participation. For those with tetraplegia, but not
paraplegia, higher education was also associated with greater life satisfaction. Age at injury was not associated with
educational achievement for either group.
Conclusions: Education is an important aspect of preparing children and adolescents with SCI for adulthood. Higher
levels of education are positively associated with many other adult goals.
Objectives
•Learn the average education level of adults with pediatric-onset SCI.
•Learn injury-related factors associated with higher education levels.
•Learn other outcomes associated with education level.
Funding Source: Shriners Hospitals for Children grant #9190
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P16 The Rural Woman Veteran with Spinal Cord Injury: A Case Study
Elizabeth Letsch, PhD
Demographics: This 38 year-old Caucasian woman incurred C6-7 ASIA B tetraplegia in a single vehicle MVA 15 years
ago. She also incurred a mild brain injury at that time. Never married, she lives alone in a rural Florida community, does
not drive, and is unemployed.
Clinical Issues and Unique Characteristics: Ongoing difficulties with emotional adjustment to SCI include guilt over
incurring her SCI, belief that she will not marry or have children, and desire to work but limited opportunities. History of
alcohol dependence, recurrent panic attacks, and major depressive episodes. In recent years, the depression became
chronic and severe with hallucinations and suicidal thoughts. Her only social contact was weekly church attendance and
the monthly Meals on Wheels volunteer. After a fall in church, she was asked not to return for fear of liability and
grocery shopping assistance stopped. Caustic interactions with her only living relative continued due to financial ties and
her strong desire for relationships. Her poodle, her primary companion, died. Years of prejudice by local residents
increased her sense of differentness, self/SCI-loathing, and social isolation.
Treatment/Interventions: Over 10 years, the SCI’
s mental health providers referred her to her local CMHC where she
received medication management. Due to their insensitivity to her reactions to SCI, she did not ask for additional
counseling or psychotherapy. SCIPsychology began providing regular telephone contact for emotional support, and she
initiated calls during times of heightened distress. Her suspiciousness toward non-SCIspecific providers resulted in
refusal to accept treatment from a nearby VA outpatient clinic.
Results/Outcome: Regular contact enhanced her trust in mental health providers generally, and her SCI-psychologist
specifically. Her sense of hope about the future continued to waiver but she noted feeling validated and understood. After
two years of interactions by telephone, the veteran developed enough trust in her psychologist to accept advice to
transfer her MHC to the clinic closer to her home. She now keeps in-person appointments for supportive psychotherapy
and has had a decrease in symptoms including suicidal ideation. Unfortunately, other social factors and quality of life
have not yet improved.
Objectives
•Increase understanding of the unique and common psychosocial challenges faced by rural women with SCI.
•Describe the challenges to providing distance mental health care while highlighting the role of trust and therapeutic
alliance.
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•Make explicit how unmet needs and limited resources negatively affect the quality of life of underserved persons with
SCI.
P17 Rehabilitation Intervention for an Individual with Brain/Spinal Cord Injury and Visual
Impairment
John W. DenBoer, MA and Sigmund Hough, PhD, ABPP
Background: Case study explores the challenge of using verbal feedback with an individual following simultaneous
traumatic brain injury and spinal cord injury (TBI/SCI). A male in his late-20’
s received a TBI/SCI secondary to a
motorcycle accident in which he was not wearing a helmet. He sustained a T5 ASIA B ischemic spinal cord injury and
severe open head injury. Length of coma was 12 weeks. He experienced legal blindness in both eyes as a result of
ischemic optic neuropathy. He presented to an urban veterans affairs medical center for rehabilitation in preparation for a
blind rehabilitation program. Symptom presentation included persistent delayed memory loss (particularly for details)
and problems with rehabilitative skill acquisition. Due to his visual and memory decrements, he experienced difficulty
achieving functional rehabilitation gains.
Research Design: Case study is AB in nature, with A = the baseline period prior to verbal feedback and B = verbal
feedback.
Methods: Neuropsychological testing revealed moderate-to-severe deficits in the area of delayed memory. Psychology
consulted with interdisciplinary team, asking staff to provide clear and constant expectations regarding his progress in all
rehabilitation modalities. Psychology worked with the person to generate strategies for information retention, including
using a tape recorder to play information and presenting information in a straightforward manner; information was also
presented in both tactile and verbal modalities. Additionally, a structured daily schedule with goals and expectancies was
used, with this information communicated throughout the day.
Results: This individual demonstrated difficulty in making functional gains, which were related to difficulty
remembering new information. Without the ability to carryover information, he lacked a cognitive benchmark from
which to base his rehabilitation progress. At the conclusion of cognitive rehabilitation, he was able to demonstrate
capacity to make functional rehabilitation gains via consistent verbal cues and reinforcement.
Conclusions: The use of verbal feedback with a person with TBI/SCI and visual impairment proved to be quite
challenging. However, through interdisciplinary team communication and efficient staff interventions, he was able to
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demonstrate significant functional gains, ultimately improving his functional independence and personally-defined
quality of life. Specific details of interventions used and recommendations offered are presented.
Objectives
•To gain increased knowledge concerning the impact of visual impairment and traumatic brain injury on rehabilitation
with a person with SCI
•To learn more about dual-diagnosis TBI/SCI
•To learn how to use verbal feedback and psychotherapy for individuals with SCI that are blind and have cognitive
difficulties
P20 Family Intervention Utilizing the Functional Independence Measure: A Marine’
s Acute
Polytrauma Rehabilitation
Kristi S.Van Sickle, PsyD; Nancy McGee-Hernandez, OTR/L; Elizabeth Letsch,
PhD; and James Hughes, PTMS
Introduction: Given the young age of many injured active duty personnel, a high level of parental involvement during
rehabilitation has been noted. Providers have been challenged to formulate ways to productively include family members
in the rehabilitation process that maximize patient and family well-being and satisfaction.
Demographics: The patient was a 21 year-old single, Caucasian, active duty Marine. While serving in Iraq, he sustained
a gunshot wound resulting in T4 ASIA A paraplegia and a brachial plexus injury resulting in limited use of his right
upper extremity. He entered acute inpatient rehabilitation within a VA SCI/ Polytrauma Center two months post-injury.
Clinical Issues: The Marine identified his father as his primary social support and his father was present daily on the
unit. A generally healthy father-son relationship was observed, and the Marine enjoyed his father’
s support throughout
his rehabilitation activities. The father was observed to provide more assistance than was necessary to his son, and the
Marine acknowledged his own tendency toward “
laziness.”They both maintained an expectation that he would walk
again.
Unique Intervention: After providing consent, the Marine and his father were educated about the Functional
Independence Measure (FIM) with the goal of providing a structured approach for communicating expectations about
and reactions to rehab. They participated in a 90-minute training session conducted by the psychology resident who
instructed them on the FIM scoring system and decision trees, and explained the team’
s assessment of his:
•Functional abilities at admission
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•Goals for functioning at discharge
•Functional abilities each week during rehab
Then, they met weekly with Psychology, Occupational Therapy, and Physical Therapy, after documenting their estimates
of his FIM scores, to compare with the team’
s and discuss any discrepancies.
Results: FIM training and monitoring proved to be an effective family intervention by reducing ambiguity and
enhancing patient and family understanding of rehabilitation goals and progress. It also served as a positive mechanism
for family participation in rehabilitation and elicited the father's support in encouraging and facilitating increased patient
independence. Further studies should assess the utility of this intervention with a variety of patients and their families.
Objectives
•To highlight some of the patient-family dynamics unique to young adult active duty military personnel participating in
acute polytrauma/SCI rehabilitation
•To describe a multidisciplinary intervention using the Functional Independence Measure as a means of increasing
patient-family-team communication while enhancing family satisfaction and appropriate participation
•Discuss the outcomes of this intervention used with one Marine and his father, and the possible benefits of use with
other rehab participants.
P27 Depression and Pressure Ulcers in Veterans with Spinal Cord Injuries and Disorders
Bridget M. Smith, PhD; Maylou Guihan, PhD; Sherri L. LaVela, MPH/OTR, MBA; and Susan L.
Garber, MA
Background: Pressure ulcers are a major cause of morbidity for veterans with spinal cord injury/disorder (SCI&D). The
objective of this study was to examine the relationship between depressive symptoms, health behaviors, and other patient
characteristics and the risk of having one or more pressure ulcers.
Research Design: A cross-sectional survey incorporating questions from the CDC’
s Behavioral Risk Surveillance
System was mailed to Paralyzed Veterans of America members in October 2003. The outcome measure was having zero,
one, or more than one self-reported pressure ulcers during the previous year.
Methods: Mental health measures were based on components of the CDC’
s HRQoL module, and included having
frequent (14 or more) days of depressive days. Multivariable partial proportional odds ordinal logistic regression was
used to examine the association between depressive symptoms, patient characteristics, health behaviors, and having one
or more pressure ulcers.
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Results: Respondents who reported having frequent days with depressive symptoms were more likely than respondents
with fewer days of symptoms to report one or more pressure ulcers (OR=1.61, CI: 1.31 –1.98, p = 0.000). Other patient
characteristics significantly associated with having one or more pressure ulcers included having diabetes (OR=1.68, CI:
1.34 –2.10, p = 0.000), being a current smoker (OR=1.31, CI: 1.06 –1.62, p = 0.012), and injury duration >30 years
(OR=1.50, CI: 1.17 –1.94, p = 0.002. Veterans service connected for their SCI (OR=0.56, CI: 0.46 –0.68, p = 0.000) or
who only received care at the VA (OR=0.81, CI: 0.69 –0.95, p = 0.012) were less likely than other veterans to report one
or more pressure ulcers.
Conclusion: Veterans with spinal cord injury and disorders who had frequent depressive symptoms, smoke, had
diabetes, and longer durations of injury were more likely to have pressure ulcers, but less likely to have pressure ulcers if
they received their care exclusively at the VA or if they had a service connected injury. These results highlight the
importance of focusing on mental health, smoking cessation, and chronic diseases for the prevention and treatment of
pressure ulcers.
Objectives
•Describe association between depressive symptoms and risk of pressure ulcers
•Describe the mental health sections of the CDC’
s HRQoL measures
•Describe association between health behaviors (smoking and drinking) and report of pressure ulcers
Funding Source: VA Health Services Research and Development
Heather F. Russell, PhD, works at Shriners Hospital for Children in Philadelphia, Pennsylvania.
- 54 -
Clinical Issues
Pediatric SCI: An Update
Eva Miller, PhD
Of the nearly 11,000 spinal cord injuries (SCI) which occur each year, approximately 20% are accounted for by
individuals younger than 20 years of age, with children less than age 15 comprising 3 % to 5% of all SCI (National SCI
Statistical Center, 2006). Motor vehicle accidents are the most common cause of SCI in children and adolescents.
Additional causes include lap-belt injuries, birth-related injuries, child abuse, juvenile rheumatoid arthritis, transverse
myelitis, sports injuries, diving injuries, and, less frequently, falls (Gorski, Slifer, Townsend, Kelly-Suttka, & Amari
(2005). Violence is also associated with SCI in younger individuals across all age groups, especially in Hispanics and
African Americans (Vogel & DeVivo, 1997). Males comprise 80% of all SCI in children; however, the preponderance of
males becomes less marked as age of injury decreases, with females equaling males in those ages 5 and younger (Vogel
& DeVivo). The severity of SCI varies as a function of age, with younger children more likely to sustain paraplegia or
complete injuries. The purpose of this article is to provide an overview of the major medical and psychosocial issues
associated with pediatric SCI and to identify treatment recommendations and resources which have been shown to be
effective in addressing SCI in children and adolescents, including transition to adult care and independence.
Medical Complications
The care of persons with SCI involves numerous issues, including bowel and bladder management, skin care, pressure
sore prevention, and management and prevention of autonomic dysreflexia. Secondary complications such as spasticity,
hypercalcemia, pulmonary complications, and deep vein thrombosis can also be as disabling as the underlying SCI
(Vogel, Hickey, Klaas, & Anderson, 2004). Thus, developmentally appropriate education and family-centered care are
essential in caring for an adolescent or child with SCI.
The complications of a neurogenic bladder include the loss of sensation of fullness and the inability to
voluntarily urinate or completely empty the bladder. An intermittent catheterization program is usually initiated at
around three years of age. The parent or guardian should be taught how to perform catheterization care until the child
reaches age 5 to 7 years and can be taught self-catheterization. Similarly, neurogenic bowel management programs may
be initiated with timed toileting simply by placing the child on a commode and encouraging him or her to “
bear down”
(Vogel et al., 2004). Adolescents should be proficient at performing and directing both their bowel and bladder
- 55 -
programs; however, as with younger children, they may need to be closely monitored to ensure programs are carried out
properly and timely.
Prevention of skin ulcers is also a key factor in pediatric SCI. Positioning and repositioning as well as daily skin
checks and avoiding hot car heaters, radiators, hair dryers, curling irons, and hot cups and plates placed in the child’
s lap
are also methods of reducing the likelihood of developing pressure ulcers. As the child grows older, parents and
guardians are also advised to encourage increased self-care.
Autonomic dysreflexia is a life-threatening complication associated with SCI and is most commonly seen in
individuals with T-6 or higher lesions. The clinical manifestations in adults and children include elevated blood pressure,
headaches, bradycardia (tachycardia in young children), profuse sweating, blurred vision, nasal congestion, and anxiety
(Vogel et al., 2004). Common causes of autonomic dysreflexia are bladder irritation, bowel problems, pressure ulcers,
tight clothing, burns, menses, and fractures. Parents and guardians are cautioned to learn to recognize these symptoms to
avoid complications in children and adolescents with SCI.
Spasticity, hypercalcemia, pulmonary complications, and deep vein thrombosis are among the many secondary
conditions that can occur in persons with SCI. As a result, proper education, close monitoring, and frequent consultation
with medical personnel is necessary, especially with newly acquired injuries and children who have a history of
complications. Use of the Internet and other sources such as community guides and resource supports can also help in the
prevention of medical problems in youth with SCI.
Psychosocial Factors
A number of demographic, environmental, and personal characteristics have been correlated with adjustment to pediatric
SCI including age of onset, gender, severity, and social support (Antle, 2004; Potgieter & Khan, 2005); transportation,
job opportunities, and recreational and dating opportunities (Anderson & Vogel, 2003); and education about one’
s
disability (Dorsey, 2005). For example, in a study designed to assess self-worth in 85 youth with disabilities (mean age
15), it was hypothesized that the subjects who were born with a disability (spina bifida) would have higher self-worth
than those who acquired a disability (SCI) (Antle, 2004). There was no significant difference between the two groups,
however, on their perceptions of self-worth. In addition, gender and severity of the disability did not significantly affect
self-worth scores. Older individuals had lower self-worth scores than the younger participants and those who felt they
had social support from close friends had significantly higher scores on self-worth than those who did not perceive they
- 56 -
had this support. Support from parents yielded the highest scores on self-worth. This research suggests that young
individuals with physical disabilities have perceptions of self-worth similar to those of their nondisabled peers. Having
close friends is an important factor in facilitating adjustment to disability during critical phases of childhood and
adolescent development. With regard to parenting, it should be noted that although Western society suggests that young
people should be separating from their families and launching out on their own, this research indicates that with injured
children, parents may need to remain involved in their child’
s life well into adulthood in order to foster healthy
adjustment across the developmental spectrum.
Anderson and Vogel (2003) examined domain-specific levels of satisfaction among adults with pediatric-onset
SCI. Participants in the study sustained a SCI at age 18 or younger (mean age 14) and were at least 24 years of age at the
time of the interview (mean age 29). Of the 216 people interviewed, dating opportunities, job opportunities, and income
were the three areas in which the participants were the least satisfied. The highest satisfaction ratings were in the
domains of transportation, education, and social/recreational opportunities. There were no significant differences
between males and females in any of the domains. There were also no differences between persons with tetraplegia and
paraplegia, and age at injury and race were not predictive factors of satisfaction in any of the areas assessed. Sexual
satisfaction fell in the middle of the spectrum for both males and females. Thus, although dating and employment issues
were ranked as unsatisfactory, these data suggest that individuals with severe SCI are able to exert control over their
lives and function similarly to persons with less physical impairment in terms of their psychosocial adjustment to
disability.
Recommendations and Resources
As you can see, there are a myriad of medical and psychosocial factors that influence young individuals’ability to adjust
to their SCI. The following overview by Vogel et al. (2004) provides specific recommendations to enhance their
adjustment to their disabilities as they progress through the major life stage transitions:
 Talk with young children about their condition and abilities;
 Encourage toddlers to begin assisting in activities associated with their care;
 Teach children about their specific health care needs;
 Continue to assess children’
s knowledge of their disability and provide additional information as they
grow older;
- 57 -
 Allow children to express their experiences about their disabilities;
 Encourage children to participate in decision-making by offering them choices;
 Assign household duties and responsibilities that affect the child and the entire family;
 Encourage participation in hobbies and make time for fun;
 Facilitate discussions between children and their health care providers by allowing them to speak
directly to doctors, nurses, therapists, and others;
 Help adolescents develop self-awareness by focusing on interests, talents, and abilities;
 Discuss sexuality and other related issues with adolescents;
 Obtain information about state vocational and rehabilitation programs and school transition programs;
 Encourage adolescents to do volunteer work or obtain part-time employment;
 Apply for SSI and Medicaid, if appropriate, at age 18 if previously denied for financial reasons;
 Begin to identify adult care providers as adolescents near adulthood;
 Assist young adults with finalizing health care financing and insurance options; and
 Remain as a resource and support system for young adults as they transition to work and independent
living.
Educating families about SCI is also important. This is especially true when preparing for a child’
s initial
discharge from formal rehabilitative services. According to Dorsey (2005), the formal feedback from patients and
families was that they were initially satisfied with the education they got while receiving inpatient services; however,
follow-up phone calls and clinic visits showed that many families were not confident about their abilities to manage their
child’
s care at home. As a result, several strategies were developed to enhance education for families dealing with
pediatric SCI. These methods included developing handouts and teaching materials, using formal published materials,
and providing a list of SCI resources. Some of the helpful Web sites identified were (a) the Spinal Cord Injury
Information Network (www.spinalcord.uab.edu), (b) National Spinal Cord Injury Association (www.spinalcord.org),
and (c) the American Spinal Cord injury Association (www.asia-spinalinjury.org). Dorsey and her colleagues also
reviewed a number of published books pertaining to SCI and have recommended: Yes You Can: A Guide to Self-Care for
Persons with Spinal Cord Injury (Hammond & Burns, 2000). Among other things, this book provides information about
what the spinal cord does, what is involved in SCI, recovery expectations, skin care, respiratory care, bowel and bladder
- 58 -
management, medications, home modifications and equipment, psychosocial adjustment, sexuality, and community
resources.
Summary and Conclusions
Young individuals who sustain SCI have complex medical and psychosocial issues that will affect their adjustment to the
disability. Parents and guardians have numerous resources available to them to assist in the facilitation of their child’
s
adjustment through the developmental spectrum. Educating children about their SCI and encouraging active decisionmaking and participation in their care from an early age, establishing a balance between independence and providing
long-term support, and understanding that all children and adolescents have unique needs and these needs will change as
they progress developmentally are but a few recommendations that should be used to support their ability to living and
growing older with a disability.
References
Anderson, C. J., & Vogel, L. C. (2003). Domain-specific satisfaction in adults with pediatric-onset spinal cord injuries.
Spinal Cord, 41, 684-691.
Antle, B. J. (2004). Factors associated with self-worth in young people with physical disabilities. Health and Social
Work, 29(3), 167-175.
Dorsey, L. (2005). Spinal cord injury interdisciplinary education. JSPN, 10(2), 86-89.
Gorski, A. A., Slifer, K. J., Townsend, V., Kelly-Suttka, & Amari, A. (2005). Behavioral treatment of non-compliance in
adolescents with newly acquired spinal cord injuries. Pediatric Rehabilitation, 8(3), 187-198.
Hammond, M., & Burns, S. (2000). Yes you can: A guide to self-care for persons with spinal cord injury. (3rd ed.).
Washington, DC: Paralyzed Veterans of America.
National Spinal Cord Injury Statistical Center (2006). University of Alabama at Birmingham Annual Statistical Report.
http://www.spinalcord.uab.edu/show.asp?durki=116891
Potgieter, C. A., & Khan, G. (2005). Sexual self-esteem and body image of South African spinal cord injured
adolescents. Sexuality and Disability, 23(1), 1-20.
Vogel, L. C., & De Vivo, M. J. (1997). Etiology and demographics. In R.R. Betz & M. J. Mulcahey (Eds.). The child
with a spinal cord injury (pp. 3-12). Rosemont, IL: American
- 59 -
Academy of Orthopedic Surgeons.
Vogel, L. C., Hickey, K. J., Klaas, S.J., & Anderson, C. J. (2004). Unique issues in pediatric spinal cord injury.
Orthopedic Nursing, 23(5), 300-308).
Eva Miller, PhD, works at the University of Texas Pan Am in Edinburg, Texas.
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News Clips From Mather Lifeways
Why are Disability Rates Dropping among Older Americans?
The Milbank Quarterly (March 2008)
This article seeks to explain why the disability rate among older Americans has dropped in the past couple
of decades. The authors review the available research evidence and analyze national data trends on the need
for Activities of Daily Living (ADLs). They conclude that medical technology advances and
socioeconomic changes are responsible for the drop in disability rates. For more information, see abstract
at http://www.milbank.org.
Eating Blueberries May Enhance Memory
Free Radical Biology and Medicine (Forthcoming, 2008)
Researchers in the UK have discovered that Phytochemical-rich foods, like blueberries, are an effective
way to reduce memory deficits. This study points toward possible diet-based memory-loss prevention
strategies. For more information, see press release at http://www.pms.ac.uk.
Debunking Old Age Myths about Aging and Belief
American Sociological Review (October 2007)
A recent analysis of the General Social Survey examined the political beliefs of more than 46,000
Americans. The analysts focused on changes in attitudes occurring within birth cohorts at different stages
in their life from the period of 1972 to 2004. Findings suggest that although all cohorts moved toward a
general increased tolerance, the oldest birth cohorts showed greater changes toward political tolerance. For
more information, see abstract at http://www.ingentaconnect.com.
Online Fracture Risk Calculator Published
BGarvan Institute (March 2008)
Australian researchers have published an online fracture-risk calculator that allows individuals to assess
their personal risk of bone fracture. The calculator is based on over 17 years of research and takes into
account an individual’
s bone density, age, sex, and history of fractures. To use the calculator, see
www.fractureriskcalculator.com.
- 61 -
A Series on Long-Distance Caregiving
Circulation (January 2008)
This article is the second in a three-part series that focuses on long-distance care offer older parents. It
discusses ways to overcome communication barriers, and specifically suggests that caregivers base their
relationships on respectful communication that is tailored to family history. The series promotes creating a
care plan, communication strategies, and the importance of self-care for the caregiver. For more
information, see: http://www.craigdailypress.com.
New Study Demonstrates that Modest Improvements Can Reduce Disability Risks for
Older Adults
The Milbank Quarterly (March 2008)
This study examines the relationship between government programs and disability patterns in older adults. The authors
sought to examine whether economic and social policies impact rates of disability. They confirmed their hypothesis that
more generous payments from the federal cash program to poor elderly, Supplemental Security Income (SSI), would
reduce disability. Interestingly, an increase in benefits as small as $100 per month was shown to decrease the risk of
disability significantly. These reductions have the potential to significantly reduce medical costs. For more information,
see: http://www.milbank.org.
Caregivers Ability to Cope with End-of-Life Care
Cancer Nursing (March 2008)
This qualitative study identifies five factors that influence a family’
s ability to cope with end-of-life care. They are: the
caregiver’
s approach to life, the patient's illness experience, the patient's recognition of the caregiver’
s contribution to his
or her care, the quality of the relationship between the caregiver and the dying person, and the caregiver's sense of
security. For more information, see article by clicking here.
Family Caregiving Support Locator Made Available Nationwide
Journal of American Geriatrics Society (January, 2008)
- 62 -
The National Center on Caregiving has launched the web-based Family Care Navigator. This online tool provides
comprehensive guidance to family caregivers in all 50 states by helping them learn about local support programs. For
more information, see the Navigator webpage by clicking here.
In Other News. . .
SAGE Launches Society Relations Newsletter
Los Angeles, London, New Delhi and Singapore (May 2, 2008) –SAGE, the world’
s fifth largest journal publisher, has
launched a newsletter for societies and associations. The publishing industry is experiencing unprecedented change and
it can be hard for societies to keep up. SAGE Connection, the bi-annual newsletter, highlights both challenges and
opportunities in publishing and shares SAGE's experiences.
For four decades SAGE has been forging strong partnerships with societies. More than half of SAGE’
s 500+
journals are published on behalf of professional associations and societies, including world-leading organizations
such as the American Orthopaedic Society for Sports Medicine, American Association of Diabetes Educators, and
American Educational Research Association. SAGE has seen significant growth in its society publishing program,
including 22 new partnerships so far in 2008, making it even more important to provide this community with
information and resources to support their organizations and membership.
Readers can now access the inaugural issue of SAGE Connection on SAGE’
s Society Relations website at:
www.sagepub.com/societies, or they can sign up to receive a complimentary version via email at:
https://secured.sagepub.com/societyrelations_signup.htm. Regular thought-provoking sections and columns of the
newsletter will include:
·
·
·
·
Industry news
Interviews and case studies
Corporate news highlights
“
How to”advice columns
“
The first issue of SAGE Connection contains key information on industry awards, going green, social
bookmarking, corporation news, and other vital announcements for societies and their members,”said Sara Michel,
SAGE Society Relations Manager and editor of the newsletter. “
It is our mission to truly make SAGE a natural home
for societies, and this newsletter is one of our key initiatives.”
- 63 -
Message from the Tri-Association Presidents
Dear Tri-Association Members:
The Presidents of the Tri-Associations wish to provide you with the most recent information regarding changes that are
transpiring. As you are well aware, a Strategic Planning Council (SPC) has been formed with four representatives from
each of the three Associations, in addition to the Therapy Leadership Council (TLC), the latter composed of PTs and
OTs. There have been a myriad of teleconferences and several face-to-face meetings of this group with the charge to
look at governance, finances, the annual conference, and membership areas.
As a result of these ongoing meetings, the following information needs to be relayed to all members:
 The 2008 Annual Conference, August 11-13 in the Orlando area at the Gaylord Palms, has been well organized
by the Joint Program Committee and looks to have exceptional quality .
 As you as aware, Paralyzed Veterans of America (PVA), has generously provided the membership with
conference funds to help defray costs. A previously sent email defines the parameters of these funds (e.g., a
first-come, first-serve basis up to a ceiling of $500/member with submission of the PVA reimbursement form
and associated receipts). We urge all members who plan to attend the 2008 Annual Conference to take
advantage of this kind offer.
 The 2009 Annual Conference will occur conjointly with the American Spinal Injury Association (ASIA) in
Dallas, September 23-25. More details of this exciting joint venture will be forthcoming.
 After much deliberation by the SPC, it has been determined that commencing October 1, 2008, Tri-Association
and TLC annual conference details, organizational management, and primary fiscal support will transfer from
United Spinal Association to PVA. Given our history with EPVA/United Spinal Association, this was an
extraordinarily difficult decision. The initial roots of several of the Associations, overall fiscal support (totaling
over $22,500,000 over our collective histories), encouragement, pro bono organizational structure, as well as
our Annual Conference grant structure has been peerless. While we are changing our primary benefactor, we
will never forget our robust past. Additionally, we are very appreciative of PVA’
s past support and their
ongoing commitment to our productive future.
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 Lastly, the SPC has committed to a more integrated, unified Association by 10.1.09. The SPC is actively
involved in determining the finer details of governance and organizational structure. It is our collective hope
that in the future, we will be totally independent from an organizational perspective. This will then allow us to
partner with a myriad of external groups that only serve to enhance our mission.
Please speak to your respective BOD members for additional information as questions arise. While these times are
challenging, it is held that these changes will lead to another fruitful chapter in the evolution of our Association.
Look forward to seeing each of you in Orlando in August.
Best regards,
Diane Reinhard, RN, MBA
President, AASCIN
Larry Vogel, MD
President, APS
Lester Butt, PhD, ABPP
President, AASCIPSW
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Assistive Technology
Conquering SCI Challenges through Self-Empowerment and Self-Advocacy
Kimberly A. Walters
As a spinal cord injury (SCI) survivor, you will experience a plethora of emotions
early post-injury, and at times, several months and/or years post-injury these
emotions will arise again. The degree of emotionality will vary for each individual,
but the one thing that will remain constant with the majority of SCI survivors is the
common ground of emotions.
For most novice SCI survivors, denial, sadness,
depression, anger, fear, thoughts of suicide, helplessness, and seeking the answer to
the infamous question, “
why did this happen to me”
, will consume a person’
s thoughts. Coupled with the financial
devastation, loss of gainful employment, independence, friends, high cost of hospitalization, and the introduction to
Assistive Technology Devices (ATDs), you will become inundated and overwhelmed beyond words.
I, Kimberly A. Walters, T-5 Complete SCI survivor since June 1993, as a result of an automobile accident,
experienced these emotions daily and for many, many weeks post-injury. Within days I learned first-hand the
importance of self-advocacy and I discovered this through, self-empowerment. As human beings, we all have choices.
It is through our choices that we as human beings grow, learn, experience setbacks and achievements, and find the
courage and strength to be strong advocates for ourselves or remain idle and allow our environment to make choices
for us.
In the last AT column, Dr. Marcia J. Scherer, stated the individual empowerment model views both
environmental modification and “
equipping the individual”as necessary. The environment is seen as presenting barriers
and challenges, but also as stimulating and offering opportunities for accomplishments. ATDs can lead to living a selfsufficient, independent life that will enhance self-esteem, allow an individual the opportunity to become gainfully
employed, and educate society that persons with disabilities are more than capable individuals, if given the opportunity.
Unfortunately, many SCI survivors and persons with disabilities are not properly aligned with the ATDs that
will be for the betterment of their well-being. Reasons for this are the medical model philosophy where providers and
doctors’believe they know what will work best for the person with no interaction with the patient or family; and people
with disabilities lack of knowledge about their rights, their inability to self-advocate, as a result of feeling helpless and
the “
fear”of voicing their emotions to the medical profession.
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I believe self-empowerment, self-advocacy, and the personal goal to live an independent, self-sufficient daily
life with a disability is the equation that differentiates people with disabilities from being over achievers versus “
settling”
within the scope of their disability. In addition, succumbing to the medical model philosophy, our environment, and the
peer pressure as to what AT device will work best. It’
s these factors that allow oneself to be stereotyped by society as an
incapable person. Outcome of these factors is many persons with disabilities bestow limitations on themselves and
become resilient in overcoming the challenges a disability can bring to an individual, therefore, the disability becomes
the controlling factor—not the person. Without my own self-empowerment, my innate ability to self-advocate
efficiently and wanting to live a productive life post-injury, I, too, would have been a person with a disability who
“
settled.”The challenges a disability brings to an individual would become much more difficult to handle on a daily
basis and secondary problems could arise—severe depression, helplessness, and a pessimistic outlook on the future. It’
s
imperative that people with disabilities make the choice to take control of their life through their own self-empowerment
and self-advocacy–
–not let the disability control them!
Since my SCI, I learned early on that if I didn’
t advocate for the betterment of myself, I would have been
another person who surrendered to the medical model philosophy. The steps that I took to take control of my paralysis
were to address issues with the medical profession that I wasn’
t in agreement with. Issues range from transferring onto a
shower bench instead of having a roll-in-shower in my home to being assertive with my state’
s vocational rehabilitation
services so I can live an independent life in my own home with ATD’
s. My self-empowerment early post-injury allowed
me to regain my driver’
s license 4 months after being discharged from the hospital and maintain a highly independent
life with no assistance from a personal caregiver the last 14-plus years. It’
s the fear of losing my self-empowerment,
independence, and the inability to overcome various challenges a disability brings to an individual, which has allowed
me to have control over my life—not my paralysis. This was accomplished through my ability to self-advocate and not
allowing others to be my voice.
If you remain silent, you will lose your own self-empowerment, the freedom to make choices for yourself, and
the possibility of living an independent, self-sufficient life. It shouldn’
t take a person’
s highest level of determination to
be treated equally in our society. When the Americans with Disabilities Act (ADA) was signed into legislation, July 26,
1990, there were 6 million businesses that were non-ADA compliant. As of July 2007, there is 5.5 million businesses
still non-ADA compliant (source: University of Alabama). Without optimism and interdependence, persons with
disabilities will be faced with the continuous daily challenge to proving themselves as capable individuals to society.
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I believe to have an inclusive society its imperative that each person with a disability, their family, friends, and
peers educate society on the capabilities of persons with disabilities. Knowledge is power only if it’
s applied. Therefore,
self-empowerment, self-advocacy, and continually educating society are the keys to breaking down barriers for people
with disabilities today and in future generations.
Steps to take are:
 Know your rights under the ADA
 Avoid using negative connotation (handicap, disabled) when referring to one self. These words express broken
and/or put at a disadvantage). People with disabilities are not broken or are they disadvantaged individuals.
 Self-Advocating for one self and educating others on the barriers you may encounter daily
 Take training courses on self-advocacy (contact local Independent Living Centers,
research the internet and contact your state rehabilitation services)
 Remain positive, active, and healthy
 Set personal goals to achieve
 Believe in your abilities
 Never state, “
I can’
t!”Instead, “
I can, I am, and I will!”
As noted in Dr. Marcia Scherer, author, “
Living In the State of Stuck,”and her last article, It’
s Not About the
Medical vs. Social Models–
–It’
s About Empowerment, she placed great emphasis on the medical profession to
understand, manage, respect, and educate family and friends the importance of the SCI survivor’
s plethora of emotions
they will experience during their hospital rehabilitation. I can attest to the fact that all of these factors are crucial to an
individual’
s rehabilitation.
Due to the severity of my injuries––
neck was broken at C-5–
C-6 and fractured all the way up to C-1, spine was
broken in 32 countable breaks, every rib was broken but two, pelvis was fractured, left lung bruised, spinal cord severed
at T-5, and massive internal bleeding–
–my rehabilitation was 17 weeks-long. The first 9 weeks I was unable to sit-up no
higher than a 45-degree angle. It was during these 9 weeks that the medical profession allowed me to experience a
“
safety zone”within the hospital environment. Safety zone did not allow me to experience the barriers that wheelchair
users encounter daily. Inaccessible curb cuts, restrooms, accessible aisles in establishments, accessible parking, and the
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constant stare of society members outside of the hospital environment. It wasn’
t until my 10th week during my
rehabilitation stay that I was taken outside of hospital grounds to a local McDonald’
s restaurant. This first encounter was
an educational experience for me. Curb cuts weren’
t near the restaurant entrance, instead my nurse and I had to wheel a
block to find a curb cut and then back track to the restaurant. Once inside, I felt the “
disability laser stare”by patrons in
the restaurant. When ordering our food, the cashier would look at my nurse and ask her what I would like to order. After
receiving our food it was extremely difficult for me to maneuver around to find a table to sit at, as a result of narrow aisle
space. Needless to say, I didn’
t enjoy my first encounter outside of hospital grounds and I was eager to get back to my
“
safety zone.”Little did I know that these encounters upon discharge from rehabilitation would happen often and
frequent. It was this experience at the local McDonald’
s that I discovered my own self-empowerment, self-advocacy,
and I have refused to let go of it ever since. Instead, my self-empowerment and self-advocacy skills strengthen daily, as a
result of my choice to strengthen it.
It’
s imperative that the medical team, social workers, family, and friends encourage and support the SCI
survivor to venture outside of the hospital grounds early and often post-injury. Social activities such as eating out at
restaurants, attending a movie theater, visiting malls, riding a transportation bus, visiting local parks, is important to the
person’
s rehabilitation recovery. Remaining in a hospital environment for days on end is not healthy for anyone and can
lead to severe depression early post-injury. Social experiences will provide the person with SCI with knowledge,
confidence, and the opportunity to educate their family and friends on the barriers that are still existent in our society. I
believe more social interaction outside of hospital grounds coupled with their own self-empowerment and self-advocacy
is one of many key factors for a SCI survivor to live an independent and meaningful life post-injury. Without selfempowerment, self-advocacy, and the determination to never quit, the challenges a SCI survivor will encounter
throughout their lifetime will only be more challenging, at times, very debilitating, and lead to a life of “
settling”within
the scope of your paralysis and/or disability.
When we as a society realize that people with disabilities are capable of anything, then we tend to create
opportunities that are universally inclusive. Negative thinking holds that life with a disability is not worth living, but in
an inclusive society, people who find themselves with a disability are equipped with the knowledge that the opportunity
to live a positive and meaningful life awaits them! Self-Empowerment and self-advocacy are the keys to society realizing
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that persons with disabilities are capable individuals and the for persons with disabilities to achieve their future goals and
live a meaningful and productive life.
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Person Profile: Sigmund Hough, PhD
Jeanine Penzo, MSW, LISCW
Dr. Sigmund Hough, clinical neuropsychologist at the VA Boston Healthcare System in Spinal
Cord Injury and Mental Health Services, has been a member of the AASCIPSW since 1995. He
has been a very involved member of the association as noted by Heather Russell, an
AASCIPSW colleague and fellow committee member. “
(Sigmund’
s) dedication to this
association is easy to see as he has progressed from committee member, to committee chair, and
now to the Board of Directors,”Russell said.
As a fellow VA health care provider, I see how he encourages all new SCI psychology
and social work staff in Boston to join AASCIPSW, reminds us all of the benefits of serving on its various committees
and was discovered to have recently suggested a name of a Boston VA colleague for this column. In my tireless pursuit
of irony, I felt it was most appropriate to highlight Sigmund instead.
Sigmund resides in Marblehead, Massachusetts with his wife, Michelle, and son, Brian. Marblehead is a quaint
coastal town north of Boston, known both as the Yachting Capital of America as well as the Birthplace of the American
Navy. How appropriate for a psychologist serving veterans! Sigmund earned both his BA and MA in Developmental
Psychology at Columbia University and his Doctorate in Clinical Psychology at Boston University. He moved to
Massachusetts to attend Boston University, was Psychology Intern at VAMC West Roxbury/Brockton through Harvard
Medical School and has made his home here in Massachusetts
When I asked Sigmund for a copy of his Curriculum Vitae, a 14-page document appeared in my mailbox. It
constitutes an impressive list of professional achievements which includes numerous academic and hospital affiliations,
professional society and editorial board memberships as well several awards and honors. His areas of professional
expertise include clinical neuropsychology, rehabilitation psychology, pain management, and sex therapy. Friend and
colleague, Lester Butt, has known Sigmund for several years through AASCIPSW, but also added, “
I have had the
opportunity to serve as his mentor during his successful completion of the Diplomate Certification in Rehabilitation from
the American Board of Professional Psychology. As a result, Dr. Hough is now one of the 125 individuals in the United
States with this designation…I see him as one of the stars of the next generation within Rehabilitation Psychology.”
In addition to being well respected by his professional friends and colleagues, Sigmund gains the respect and
admiration of the post-doctoral psychology fellows and psychology interns from Harvard Medical School/Boston
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University School of Medicine that he mentors on a yearly basis. Shaun Burns, a 2008 fellow, said, “
His integrity,
unconditional positive regard for patients, love of learning, and commitment to personal growth combined with his
clinical, supervisory, and pedagogical skills serve to establish him as the most rewarding mentor I have had the privilege
of working with.”
Let’
s not be fooled into thinking that Sigmund is always serious and without a sense of humor. To the contrary,
Boston VA and association colleague, Phil Kleespies, shares the following anecdote about Sigmund. “
If he’
s ever shown
you the power point collage he presents to the groups of psychology internship candidates who visit our facility, you’
ll
see him in full regalia as a Jedi knight out of Star Wars complete with his light beam saber. But I guess that’
s Sigmund
fighting the Evil Empire, standing up for the cause of the good and less fortunate, especially those with handicaps or
injuries,”Kleespies said. Having the office next door to Sigmund’
s, I can also attest to the fact that he has been known to
provide some comic relief with his dry sense of humor, especially on a Friday afternoon.
It is difficult to imagine that Sigmund has time for anything other than his professional responsibilities, yet he is
a devoted husband and father as well as an active member of his church. Family time is important to Sigmund, and he
truly enjoys time with Michelle and Brian, whether at home chatting, or attempting to beat one another on their Wii
gaming system. They also share a love of baseball and enjoy supporting their favorite team, the Boston Red Sox.
(Although Sigmund admitted that he was once a Mets fan prior to moving to Massachusetts).
Sigmund works with a cadre of Red Sox fan colleagues at VA Boston, but it was on his office door that the
“
magic number”tally was updated daily during the playoffs. We were all envious of Sigmund and his family when they
attended a World Series playoff game at Fenway Park in both 2004 and 2007. He identifies Boston’
s rookie outfielder,
Jacoby Ellsbury, as his favorite Red Sox Player, not only because of his hitting ability, but because they both share
Native American heritage. Sigmund is already predicting that Ellsbury will be the American League’
s 2008 Rookie of
the Year. Sigmund has a favorite amateur baseball player as well: Brian Hough, and he proudly says that one of his best
baseball memories is his son’
s Little League Team winning a championship on Father’
s Day!
In addition to sharing a common interest in baseball, video games, and technology, Sigmund and his son have
worked on a special project together. While Sigmund excels at writing, his son, Brain, is a talented artist and they
combined their abilities to publish a book in 2006, entitled “
Wisdom of a Parent through the Eyes of a Child”. Sigmund
was inspired after reading that Piaget was first published while still an early teenager. While it was too late for this to be
one of Sigmund’
s personal goals, it was not too late for his son, and their work together commenced.
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Sigmund Hough: husband, father, psychologist, teacher, researcher, author, member of several VA committees,
and member of the AASCIPSW Board of Directors is a highly respected colleague and professional. Shaun Burns
summarized Sigmund well, saying, “
His personality and interpersonal skills provide him with the ability to assess the
climate and determine his ‘
fit’within academic, social, and professional contexts. He is able to connect with colleagues
on a professional level, but is still very comfortable working with individuals outside of the therapeutic enclave.” Lester
Butt reflected, “
Sigmund is a cherished and valued colleague and friend.”
Jeanine Penzo, MSW, LISCW, is a social worker at the VA Spinal Cord Injury Service in West Roxbury,
Massachusetts.
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Pediatric SCI
What Family Factors Relate to Posttraumatic Stress Following Pediatric Functional-Onset
SCI?
Roseanne K. Cantor, PsyD & Bret A. Boyer, PhD
Previous research has investigated posttraumatic stress (PTS) among individuals with pediatric-onset spinal cord injury
(SCI) (Boyer Tollen & Kafkalas, 1998; Boyer, Knolls, Kafkalas, Tollen & Swartz, 2000; Boyer Ware, Knolls, &
Kafkalas, 2003), as well as how PTS is related to poorer functional independence after pediatric SCI (Boyer, Knolls,
Kafkalas, & Tollen, 2000). Moreover, earlier investigations have demonstrated the importance of family factors in
functional independence outcomes, showing that PTS appears to mediate the relationship between family functioning
and functional independence (Boyer, Hitelman, Knolls, & Kafkalas, 2003). In short, it appears that within families who
have experienced a pediatric-onset SCI, problems in functioning are more likely to develop that will maintain PTS
symptoms, and these symptoms in turn appear to reduce improvements in functional independence following the SCI.
These studies have emphasized the need for active screening of family functioning and PTS. They also argue for the
application of family focused interventions in clinical settings designed to improve family functioning while reducing or
preventing the development of PTS following pediatric SCI.
In spite of prior research, however, questions regarding which aspects of family function are most related to
PTS remain largely unanswered.
This study reports on further analyses regarding how family functioning and PTS are interrelated following
pediatric-onset SCI (Cantor, 2007), with a focus on the particular aspects of family interaction that are most closely
linked with the development of PTS. This data set utilized the Family Assessment Device (FAD), a 60-item self report
measure covering six domains of family functioning: Problem Solving, Communication, Roles, Affective
Responsiveness, Affective Involvement, Behavior Control, and Overall Family Functioning. While one might expect
that the family functions measured by the subscales of the FAD, such as Communication, Affective Involvement or
Affective Responsiveness would affect PTS by interfering with more affective emotional processing (Foa & Kozak,
1986), the data indicated that the Roles subscale showed the strongest relationship to the patients’
, mothers’
, and fathers’
severity of PTS. In multiple regression equations, the Roles subscale showed partial correlations ranging from .23 to .42,
depending upon which PTS symptom cluster and which Family Members’PTS symptomatology was predicted (see
Table 1).
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The Communication subscale contributed to prediction of mothers’avoidance PTS symptoms, but for all other
PTS symptom clusters, the Roles subscale was the only significant relationship.
Table 1. Partial Correlations for FAD Subscales in Regression Equations
Roles
PTSD Total
Patient
.33 p.<.001
.23 p.<.02
.37 p.<.02
.32 p.<.02
Mother
.37 p.<.001
.28 p.<.02
.25 p.<.02
.41 p.<.02
Father
.42 p.<.001
.31 p.<.02
.31 p.<.02
.39 p.<.02
Communication
Avoidance
Mother
.21 p.<.05
Avoidance
Reexperiencing
Hyperarousal
Consideration of the exact domains of family behaviors measured by the Roles subscale, however, makes this
finding less surprising. Roles are defined as the repetitive patterns of family behavior that fulfill family functions. Ryan
and colleagues (2005) identify five necessary family functions measured by this Roles subscale: Provision of resources,
Nurturing and support, Adult sexual gratification, Personal development, and Maintenance and management of the
family system. Included within the maintenance and management of family systems function is Health Related
Functions, which will increase in their relevance following a pediatric-onset SCI. Furthermore, across the family Role
domain, all these functions contain a mixture of instrumental and affective components. Imperative for the effectiveness
of all these functions are the concepts of allocation and accountability. That is, does the family know who accomplishes
what tasks, and can you rely upon them to do so? Is there flexibility such that multiple family members can provide
certain functions? With the changes in family functioning following Pediatric-onset SCI, the crucial questions become:
 Who is accountable for providing care regarding tasks and activities for which the patient requires
help?
 Is this one person, or a flexible assortment of varied family members?
Can the patient count on these individuals following-through on the provision of such assistance?
 Can family members who are care-providers count on other family members to accomplish these
functions when they are not present and able to?
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Ideally, when multiple family members are flexible in their contribution to patient care, the patient and other family
members can rely on the others to perform the tasks when needed, and these tasks are collaboratively performed with
reliability, support and care, then the patient and other family members appears less likely to develop and maintain PTS.
In short, it appears that families that are accountable and flexible in their allocation of responsibilities surrounding
pediatric SCI are less likely to experience PTS. Feelings of control over the present and future can add to a sense of
stability and certainty, and have been associated with increased psychological adjustment in patients with SCI
(Shanmugham, Elliott, and Palmatier, 2004).
There may be two mechanisms at work regarding this relationship. When families ensure that tasks are completed,
and there is certainty regarding who is responsible for completing tasks, there is a greater degree of certainty that family
members’needs will be met, with data reflecting that family members appear to feel less traumatized. Additionally,
when families are able to collaborate and engage in the execution of tasks related to rehabilitation, caregiving, and ongoing life events following pediatric SCI, it most likely prevents family members from avoiding activities that serve as
triggers of PTS reactivity, thereby increasing the chances that they will emotionally process the life-changes that have
resulted from the SCI.
So what exactly does this mean clinically? Results of this investigation point toward using interventions that
are designed to increase communication between family members regarding accountability and flexibility in the
execution of tasks related to pediatric SCI. In the rehabilitation setting, issues related to accountability and flexibility
should be a focus of clinical attention. Because rehabilitation is inter-disciplinary, it is important for professionals from
each specialty to attend to these factors. This can be facilitated by way of teaching and practicing collaborative family
problem-solving of the dilemmas that arise around functional independence activities. It is crucial for parents to be
involved in physical therapy and occupational therapy activities so that they have a chance to practice and learn these
skills. In this way, everyone can be assured that multiple family members can accomplish these tasks.
Clinicians should have the opportunity in the rehabilitation setting to observe family members in the process of
practicing these skills. This would enable the professional to respond to any signs of intrusive ideation, anxiety, or
avoidance regarding functional independence activities.
Another important focus of clinical attention should be the facilitation of collaborative warmth, comfort, and
reassurance relevant to functional independence activities as well as ongoing life events following pediatric SCI.
Clinical activities aimed at enhancing these factors might include psycho-education, role-play, modeling, peer support,
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and family therapy. While some practitioners, especially those in integrated interdisciplinary rehabilitation settings,
may observe that most of these clinical elements are already in place, clinicians should always actively assess whether
the clinical resources are producing improvements in family functioning and PTS, and thereby protecting optimal
medical outcomes.
Toward this goal, an important clinical focus is screening. Given the demonstrated relationships between PTS,
family functioning, and clinical outcomes, patients with pediatric SCI as well as their families should be routinely
screened for problems with family functioning and PTS symptomatology. The Posttraumatic Diagnostic Scale (PDS)
(Foa, 1995; Foa, Cashman, Jaycox, & Perry, 1997).) is a 49-item self-report measure for adults. The PDS is appropriate
for individuals over 18 years of age to assess posttraumatic stress reactions corresponding to DSM-IV criteria. The PDS
provides both dichotomous and continuous (symptom severity) data for each DSM-IV symptom cluster. A
corresponding self-report measure for children 8 years of age and older is the Child PTSD Symptom Scale (CPSS) (Foa,
Johnson, Feeny, & Treadwell, 2001). Both the PDS and the CPSS can be easily administered to patients and their
families and can be utilized over the course of treatment to monitor symptoms, thereby reducing staff burden and
allowing direct evaluation of symptom change. Since the PDS and the CPSS represent parallel measures for all ages,
they offer an opportunity to measure PTS symptomatology across all family members, a benefit not offered by other
interview or self-report PTS/PTSD instruments.
Monitoring family functioning in the rehabilitation setting is another important factor in assuring optimal
rehabilitation outcomes. By utilizing a standardized and valid measure of family functioning, clinicians can be better
informed regarding family adjustment and patterns of family interaction. The Family Assessment Device (FAD), briefly
described above, is available in forms for parents and children. Because the FAD is tied to the family systems model of
treatment intervention (Miller et al., 2000), it is particularly well suited for families negotiating changes subsequent to a
pediatric-onset SCI. Clinical attention can then be focused on the processes occurring in the family, rather than on
problem origin. Both of these measures can be administered easily at various times in the treatment in order to assess
and monitor clients and their families.
When care providers are able to assess and monitor, they are better equipped to tailor interventions to the needs
of their clients. In light of research findings that highlight the importance of PTS and family factors in adjustment, and
their relationships to rehabilitation outcomes, family focused interventions aimed at reducing avoidance are indicated.
Results of the analyses presented in this article suggest that there is a high symptom specificity regarding family
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functions in the Roles domain and directly centering on SCI-related activities, that show a significant relationship to the
development, or the prevention of PTS. Since PTS appears to impede functional independence, the screening and
treatment of family functioning, PTS, and gains in functional independence appear imperative, and need to be considered
in an integrated fashion in order to maximize psychological and medical outcomes.
References
Boyer, B. A., Ware, C. J., Knolls, M. L., & Kafkalas, C. M. (2003). Posttraumatic Stress in Families with Pediatric
Spinal Cord Injury: A Replication. SCI Psychosocial Process, 16, 85-94.
Boyer, B. A., Hitelman, J. S., Knolls, M. L., & Kafkalas., (2003). Posttraumatic stress and family functioning in pediatric
spinal cord injuries: Moderation or mediation? American Journal of Family Therapy, 31, 23-37.
Boyer, B. A., Knolls, M. L., Kafkalas, C., Tollen, L. G., & Swartz, M. (2000). Prevalence and relationships of
posttraumatic stress in families experiencing pediatric spinal cord injury. Rehabilitation Psychology, 45, 339–
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Boyer, B. A., Knolls, M. L., Kafkalas, C. M., & Tollen, L. G. (2000). Prevalence of Posttraumatic Stress Disorder in
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Boyer, B. A., Tollen, L., & Kafkalas, C. (1998). A pilot study of posttraumatic stress disorder in children and adolescents
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Cantor, R. K. (2007). Posttraumatic Stress in Pediatric-onset Spinal Cord Injury; Relationships among PTSD Symptom
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Ryan, C. E., Epstein, N. B., Gabor, I. K., Miller, I. W., & Bishop, D. S. (2005). Evaluating and treating families: The
McMaster Approach. New York: Routledge, Taylor & Francis Group.
Shanmugham, K., Elliott, T. R., & Palmatier, A. (2004). Social Problem solving abilities and psychosocial impairment
among individuals recuperating from surgical repair for severe pressure sores. Neurorehabilitation, 19, 259269.
Roseanne K. Cantor, PsyD is Psychotherapist at Philadelphia Fight, in Philadelphia, PA.
Bret A. Boyer, PhD is Assistant Professor and Coordinator of Health Psychology Concentration at Widener University’
s
Institute for Graduate Clinical Psychology; Founder and Director of The Family Health Psychology Center;
and Director of Behavioral Medicine for Mercy Catholic Medical Center.
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Spinal Cord Disorders
Jeff Canar, PhD
Advance care planning is especially important when facing a degenerative condition that can affect cognitive status,
which could require the involvement of surrogate decision makers. Those living with non-relapsing, progressive
multiple sclerosis (MS) are particularly vulnerable to the loss of physical and cognitive function over time, and advanced
care planning can be particularly critical for them. Cognitive and communication changes associated with progressive
MS can make it difficult for the person to participate in health care decision-making towards the end-of-life. Once the
disease has progressed to the point where cognition and communication have been compromised, it becomes necessary
for someone to make decisions on behalf of the person with MS. Without any advanced care planning, the entire burden
falls on the medical provider and family to make decisions at a time when decision-making can be difficult.
Should a person experience a progressive decline in their physical and cognitive functioning, advanced care
planning can create a roadmap for some of the crucial issues that must be weighed at a time when a person’
s needs are
most critical. Historically, end of life decision-making started at the time a decision had to be made. It was more
reactive than proactive. Today, advanced care planning is proactive and recognizes that a thoughtful dialogue about endof-life care can, and should, take place before the individual or the family is in crisis. Advanced care planning can also
be seen as one form of preventive health care. Perceived susceptibility is one of the strongest predictors of a person’
s
willingness to practice preventive health behavior, and people with MS, particularly progressive, non-remitting MS, may
be more motivated to discuss advanced care plans because their vulnerability to complications secondary to their
condition is so high. In recognition of the importance of advanced care planning, JCHO requires hospitals to “
addresses
the wishes of the patient relating to end-of-life decisions”including policies specific to advanced directives. In the VA,
patients are asked about advanced directives upon admission to the hospital, and are provided with information and
counseling about advanced directives if they request it. It is important to note that advanced care planning is an ongoing
process. Patients and providers should be aware that choices about care can change over time, and discussions about
advanced care planning should be ongoing.
Advanced care planning involves setting treatment goals that can include any, or all, of the following: disease
treatment, pain management, and the need for mechanical ventilation, nutrition, and hydration. More broadly, advanced
care planning allows persons to preserve self-determination, express their values regarding how they would like their
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lives to end, protect against maltreatment, relieve anxiety by facilitating choice, decrease risk of litigation, and protect
financial resources. It is also a way to empower the person and their family to be more involved in care at a time when
decision-making by medical staff can become pre-emptive. In a time of crisis when decisions need to be made, careful
and thoughtful discussions can be difficult. By engaging in a dialog about advanced care planning early on, the strain
associated with these decisions may be lessened. Similarly, it may be easier to clarify the patient’
s wants and desires
when they are well. Finally, advanced care planning helps define roles for family members, and can serve to reduce
familial conflict. For example, two family members may feel differently about how care should proceed. This conflict
may have been avoidable if the person had sat down with family beforehand to address issues before they arose.
Advanced care planning can include a living will, a durable power of attorney for health care, and a DNR or
(‘
No-CPR’
) order. All three serve an important purpose and providers should check with their state statues governing
advanced care planning.
Living Wills specify the medical care a person would like to receive should they not be able to speak for
themselves and thus unable to direct their own care. For example, if independent breathing capacity is lost, whether or
not the implementation of a mechanical ventilator will be allowed can be specified in the Living Will. A Durable Power
of Attorney for Healthcare allows people to designate a surrogate decision maker who will make treatment decisions for
them in the event they cannot make those decisions for themselves. In this case, a person might designate a spouse or
parent to direct their care. DNR orders specify that should the patient experience cardiac arrest, cardiopulmonary
resuscitation (CPR) is not to be employed. All three of these procedures are important parts of the process of Advance
Care planning, and serve to document any decisions made.
Social service staff can be helpful in the discussion about advanced care planning because many physicians are
reluctant to discuss the issue with their patients. Physicians may believe that discussion about Advanced Directives
conveys a message that the person is dying and are concerned about their patient’
s reaction. They may also not want to
discuss advanced directives because they feel it limits their ability to treat their patients. Finally, physicians may fear
that the patient’
s wishes may conflict with their own values, thus placing the physician in a bind. Such a conflict can
occur when the physician believes that more can be done to treat their patient, but the person instead decides that the
recommended care would too greatly compromise their quality of life, and refuses the recommended treatment. In a
sense, avoiding the Advanced Care discussion altogether frees the physician from winding up in such a position since an
Advanced Care Directive would be in place to make the same decision for the patient long after that conversation could
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have occurred. As a result, persons with advanced MS may be denied the ability to make advanced care plans simply
because that discussion about advanced care planning was never initiated.
Social service providers can also be helpful in facilitating the communication between the patient and provider
in the event the patient is having difficulty understanding their conditions and the options available to them. With
modern medicine and the complex situations that can arise, patient’
s can become confused as to what their options are,
and the personal and financial costs and benefits of the alternatives presented them. Having a social service provider
available to facilitate communication can help ensure a better understanding between the patient and their physician.
Discussions about end-of-life can be difficult. Placing these discussions in the context of advanced care
planning provides a less threatening structure and affords a mental health care professional the opportunity to mediate
the discussion and show that even difficult topics can be discussed.
The following online resources are available to aid the provider and patient in advanced care planning:
“
Your Life, Your Choices. Planning for Future Medical Decisions: How to Prepare a Personalized Living Will”
http://www.qualitytools.ahrq.gov/summary/summary.aspx?doc_id=7303
“
Advance Directive and End-of-Life Decisions”
http://www.caringinfo.org/
“
Improving End of Life Care: Why Has It Been So Difficult? ed. B. Jennings, G. Kaebnick, and T. Murray. A special
report in the Hastings Center Report, November-December 2005.”
http://www.thehastingscenter.org/research/end-of-life-care.asp
“
Taking Care: Ethical Caregiving in Our Aging Society”
http://www.bioethics.gov/reports/taking_care/index.html
“
MS and Palliative Care: A Guide for Health and Social Care Professionals”
http://www.mssociety.org.uk/for_professionals/developing_services/palliative_care/index.html
Jeff Canar, PhD, works at the Spinal Cord Injury Service at Hines VA Hospital in Hines, Illinois.
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Clinically Focused Research
Understanding More About Long-Term Care Insurance
Shirley Jackson, LICSW
Finkelstein, A. (2007). The market for private long-term care insurance. NBER Reporter 2007,
1 (Jan-Feb) 8
The cost for long-term care is one of the largest uninsured financial risks that face the elderly in the United States and the
cost for this care is expected to triple in the next few decades. One third of nursing home costs are paid by individuals
out of pocket, and private insurance paid for only 4% of the cost in 2002. Policymakers are concerned about the rising
costs of care and how state Medicaid budgets will be affected.
The focus of the article is on providing empirical data to improve understanding of the long-term care insurance
market and to explain why there are few subscribers. The article notes a small market of private long-term care
providers, a high mark-up of premiums with limited benefits, and policy forfeiture due to lack of premium payment.
Insurance companies that lock in a premium payment schedule may go out of business before claims are ever made due
to the dramatic rise in the cost of long-term care. Individuals who realize that their health is better than they expected
may drop out of the insurance pool and that will raise both the pool of those at risk and the premiums.
The article views Medicaid as the payer-of-last resort for those with assets, as there are income and asset spenddown requirements. When there is limited income and assets Medicaid pays for care and will also pay for care when
there is an absence of private insurance. For this reason, it is viewed that Medicaid will continue to be the primary payer
once people have exhausted all of their resources.
Kemper, P., Komisar, H., Alecxih, L. 2005; Long-term Care Over an Uncertain Future: What
Can Current Retirees Expect? Inquiry, Vol. 42, No. 4, pp 335-350
This article discusses the need, use, and cost of long-term care as the baby boomer generation ages. It also examines the
current insurance structure and the private responsibility of individuals and their families to cover the uninsured risk of
nursing home placement. The focus of the article is on understating risk, and it addresses three related questions: What
remaining lifetime risk of needing LTC do retiring baby boomers face?; For how long are they likely to use paid and
unpaid LTC?, and; Who will finance their LTC? It stresses the need for policymakers to understand these issues when
considering changes in LTC financing.
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A microsimulation mode1 is used to project means, aggregates, and lifetime need. The model includes family
status, work history, retirement income and assets, disability, mortality, use of long-term care services (assisted living,
home care, nursing homes) and Financing of LTC by public programs, private LTC insurance, and out-of-pocket.
Women are seen has having a higher risk for LTC than men, and their length of care will be longer as well.
People turning 65 and aging are seen as facing a substantial risk of having to rely on families for care needs. The
estimates of nursing home use are similar to other studies.
The article points out that the need for LTC will be distributed very unequally, with about 10% of retirees
having to spend more than $100,000 in out of pocket expense before qualifying for Medicaid. Suggested options to
improve long term care coverage are to provide insurance with home care benefits, pay family members for the care they
provide, or pay a cash disability benefit when a person meets defined disability criteria.
Quinn, J., Insuring Your Future Care: Insurers are offering new forms of long-term-care
insurance for boomers who might be willing to buy at a younger age. Newsweek (June 2007),
18:149 (25) 66.
This article provides information on the costs associated with nursing home care; about $75,000 a year in 2007. Families
often step up to the plate providing care at home, and Medicaid, a government program, will cover people who have
exhausted their assets and income. For those who shop for long term insurance they will find that the premiums have
increased from 20 to 55 percent due to rising costs of care and greater numbers of claims than had been expected. To
increase the customer base, insurers are targeting boomers who might be willing to pay less by buying long term care
insurance at a younger age.
Basic benefits, inflation riders, waiting periods and benefit options are discussed, and it is noted that costs can
be cut with the purchase of fewer benefits. Insurers are promoting that people sign up for minimal protection, on the
order of $100 a day, and in later years raise it to $200 a day. Some policies reduce costs by requiring co-pays, or an
upfront deductible, and others pay the policy holder cash for services, regardless of who is giving the care.
In conclusion, the article notes the advantage of buying long term care at age 50 or 55 for lower premiums, but
cautions that you must know that your company is reputable and will stay in business. It also recommends that those who
have conditions that make them ineligible for long term care insurance due to health issues, consider the combo taxdeferred annuity plan. This plan can be used tax-free to cover long-term care starting in 2010. However, it cautions that
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an experienced long term care agent be consulted to help sort out the best long term insurance plan given one's
individual circumstances.
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Events Calendar
Events, Continuing Education, Conferences and Links
Jayne Kleinman, MS, CRC
Many organizations also offer further information on conferences, symposium, annual meetings, forums, workshops,
seminars, organizational events, and professional development opportunities including continuing education courses
such as online courses and teleconferences. You can also find information about advocacy efforts; updates about their
chapters, divisions, regions or branches; codes of ethics; scope of practice; research; publications and newsletters;
resources and resource centers, career opportunities; affiliates, and links. To learn more about these organizations go to
the bottom of the calendar.
Please let me know if you find this column useful or if you know of a way to make it more useful. Thank you.
Jayne Kleinman, 55 Corrigan, Ave, Meriden, CT 06451, jjk1009@hotmail.com, 203-631-4800.
2008
22nd Annual Conference of AASCIPSW (American Assn. of Spinal Cord Injury Psychologists and Social Workers),
Gaylord Palms Resort & Convention Center, Kissimmee, Florida. For more information go to www.aascipsw.org.
August 11–13, 2008
Mobility International USA's (MIUSA) 4th International Women's Institute on Leadership and Disability, Eugene,
Oregon. For additional information please go to http://www.miusa.org/miusa-exchangeprograms/WILD2008/index_html
August 12 –September 2, 2008
American Psychological Association Annual Meeting and Division 22, Boston, Massachusetts. For more information go
to www.apa.org.
August 14–17, 2008
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21st World Congress Rehabilitation, Quebec City Convention Center, Quebec, Canada. For more information go to
www.riquebec2008.org or www.riglobal.org/.
August 25–28, 2008
ISCoS 47th Annual Scientific Meeting & 3-Day Workshop on Spinal Cord Injury Management , Durban, South Africa.
For more information go to: www.iscos2008.org.za
September 1–
4, 2008
Abilities Expo/, Minneapolis Convention Center, Minneapolis, MN. For more information go to www.abilitiesexpo.com
or call 1-800-385-3085.
September 12–14, 2008
American Neurological Association, Salt Lake City, Utah. For more information go to http://www.aneuroa.org/.
September 21-24, 2008
The National Rehabilitation Counseling Association 2008 Professional Development Symposium, “
Rehabilitation
Counseling: Practice in a Changing World,”Marriott Mission Valley Hotel, San Diego, California. For more information
go to http://nationalrehab.org/images/ChapterConferenceFiles/2008%20-call%20for%20proposals.doc
October 2–4, 2008
American Society of Neurorehabilitation, Toronto, Canada. For more information go to
http://www.acrm.org/annual_conference/index.cfm.
October 14-20, 2008
“
Rehabilitation Research: Interdisciplinary •International •Interactive,”American Congress of Rehabilitation Medicine,
ACRM-ASNR Joint Educational Conference, Toronto, Canada. For more information go to http://www.acrm.org/.
October 15-19, 2008.
- 87 -
2008 Annual Conference of the National Academy of Neuropsychology, Sheraton New York Hotel & Towers in New
York, New York. For more information go to http://www.nanonline.org/NAN/home/home.aspx
October 22-25, 2008
2008 NRA Annual Training Conference, “
The Gateway to Rehab’
s Future Through Leadership, Teamwork and
Action.,”Sheraton St. Louis City Center, St Louis, Missouri. For more information go to
http://nationalrehab.org/images/ChapterConferenceFiles/2008%20-call%20for%20proposals.doc.
October 23-26, 2008
American Public Health Association 136th Annual Meeting ,and Public Health Expo, “
Public Health without Borders,”
San Diego, California. For more information go to http://www.apha.org/meetings/
October 25-29, 2008
International Congress of Neuroimmunology, Fort Worth, Texas. For more information go to http://www.isni2008.org/.
October 26-30, 2008
38th annual meeting of the Society for Neuroscience, Washington, DC. For more information go to
http://www.sfn.org/am2008/.
Nov. 15 –19, 2008
33rd Annual TASH Conference, “
Social Justice in the 21st Century”
, Nashville Convention Center and Renaissance
Hotel, Nashville, Tennessee. For more information go to http://www.tash.org/2008tash/index.htm
December 3-6, 2008
Council on Social Work Education 2008 Annual Program Meeting
Marriott Philadelphia, Philadelphia, PA. For more information go to www.cswe.org/
October 30–
November 2, 2008
- 88 -
Spinal Cord Rehabilitation: Innovation, Impact and Future Directions. Toronto Hotel, Toronto, Canada. For more
information go to http://www.torontorehab.com/education/scic08abstracts.htm
November 6-8, 2008
Annual Assembly of the American Academy of Physical Medicine and
Rehabilitation (AAPM&R), San Diego, California. For more information go to www.aapmr.org/assembly.htm.
November 20–23, 2008
World Congress & Expo on Disabilities in Jacksonville, Florida. For more information go to
http://www.wcdexpo.com/2008/fla/.
November 21-22, 2008
2009
First World Congress on Spina Bifida Research and Care, Dolphin Resort, Orlando, Florida. For more information go to
http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2699207/
March 15 - 18, 2009
American Counseling Association and the American Rehabilitation Counseling Assn. Charlotte, North Carolina. For
more information go to www.arcaweb.org
March 19–
23, 2009
American Psychological Association Annual Meeting and Division 22, Toronto, Ontario, Canada. For more information
go to www.apa.org .
August 6–9, 2009
Annual Program Meeting of the Council on Social Work Education, Grand Hyatt, San Antonio, TX. For more
information go to www.cswe.org
November 6–
9, 2009
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American Public Health Association, “
Water and Public Health: the 21st Century Challenge,”Philadelphia, PA (137th
Meeting) For more information go to http://www.apha.org/meetings/pastfuture/
November 7-11, 2009
2010
American Counseling Assn. and American Rehabilitation Counseling Assn., Pittsburgh, PA. For more information go to
www.arcaweb.org
March 18–
22, 2010
American Psychological Association Annual Meeting and Division 22, San Diego, CA. For more information go to
www.apa.org.
August 12–15, 2010
American Public Health Association, Denver, CO (138th Meeting) For more information go to
http://www.apha.org/meetings/pastfuture/.
November 6-10, 2010
2011
American Public Health Association, Washington, DC (139th Meeting). For more information go to
October 29 - November 2, 2011
2012
American Public Health Association, San Francisco, CA (140th Meeting). For more information go to
October 27-31, 2012.
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Organizations and Links
The following is a brief description of several organizations that may be valuable to you including their website
information. If you don’
t see one you would like to have available please send it to me at jjk1009@hotmail.com or call
203-631-4800). Thank you. Jayne Kleinman
Abilities Expo’
s are presented around the Country in various locations. They show independent and assisted living
products and services and remain dedicated to helping to improve the lives of people with disabilities. At an Abilities
Expo you will be able to spend hours on the exhibit floor, testing and comparing products and services offered by state of
the art exhibitors. Abilities Expo also offers a full line up of FREE consumer and professional workshops, offered by
leading individuals in the healthcare, education, and retail fields.
[http://www.abilitiesexpo.com/IAEBrandManager/v42/index.cvn]
ABLEDATA provides objective information on assistive technology and rehabilitation equipment available from
domestic and international sources to consumers, organizations, professionals, and caregivers within the United States.
They serve the nation's communities of people with disabilities, rehabilitation, and senior communities. ABLEDATA
provides many resources including: serving as a comprehensive information source for assistive technology including
products and services and providing direction to agencies on how to make public facilities accessible and meeting ADA
requirements by connecting them with suppliers whose products comply with these regulations. Their most significant
resource is the ABLEDATA database of assistive technology, which contains objective information on more than 34,000
assistive products (over 22,000 of which are currently available). This data base is available on the Web.
[www.abledata.com/]
The Action Network for Social Work Education and Research (ANSWER) was created in 1995 to provide specific
resources to strengthen advocacy efforts related to the emerging priorities around the enhancement of the social work
research infrastructure, as well as a number of specific efforts related to social work education and training.
[http://www.socialworkers.org/advocacy/answer/default.asp]
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The American Academy of Physical Medicine and Rehabilitation is the national medical society representing more than
7,000 physicians who are specialists in the field of physical medicine and rehabilitation. They are called physiatrists (fizz
ee at' trists).
Physiatrists focus on restoring function. They care for patients with acute and chronic pain, and musculoskeletal
problems like back and neck pain, tendonitis, pinched nerves and fibromyalgia. They also treat people who have
experienced catastrophic events resulting in paraplegia, quadriplegia, or traumatic brain injury; and individuals who have
had strokes, orthopedic injuries, or neurologic disorders such as multiple sclerosis, polio, or ALS. [www.aapmr.org]
The American Association of Spinal Cord Injury Psychologist and Social Workers is an organization of psychologists
and social workers who provide for the emotional, behavioral and psychosocial care of persons affected by spinal cord
impairment (SCI). AASCIPSW, incorporated in 1986, operates exclusively for scientific, charitable and educational
purposes. AASCIPSW provides members the opportunity to develop and refine leadership skills through active
participation in the Association. [http://www.aascipsw.org/]
The American Case Management Association (ACMA) is the first and only non-profit membership organization for
Hospital/Health System Case Management professionals. ACMA was developed for and by Hospital/Health System
Case Management professionals ensuring that member needs are foremost in our mission and endeavors.
[http://www.acmaweb.org/]
The American Network of Home Health Care Social Workers The American Network of Home Health Care Social
Workers is a professional association organized for the benefit of social workers employed in home health care settings.
[http://www.socialworkers.org/swportal/details.asp?pVal=5&pType=2]
The American Psychological Association (APA) is a scientific and professional organization that represents psychology
in the United States. With 148,000 members, APA is the largest association of psychologists world wide. The objects of
the APA shall be to advance psychology as a science and profession and as a means of promoting health, education, and
human welfare by the encouragement of psychology in all its branches in the broadest and most liberal manner, the
promotion of research in psychology and the improvement of research methods and conditions, the improvement of the
- 92 -
qualifications and usefulness of psychologists through high standards of ethics, conduct, education, and achievement, the
establishment and maintenance of the highest standards of professional ethics and conduct of the members of the
Association and to increase the diffusion of psychological knowledge through meetings, professional contacts, reports,
papers, discussions, and publications and thereby to advance scientific interests and inquiry, and the application of
research findings to the promotion of health, education, and the public welfare. [www.apa.org/about/]
The American Public Health Association -- Social Work Section was established in 1970 and provides a focus for social
work within the American Public Health Association. The section provides an opportunity for social workers to
collaborate with other health professionals and the general public around APHA activities designed to develop health
policy to improve the quality of life.http://hshp.syr.edu/aphasw/index.htm. The American Public Health Association
(APHA) is the oldest, largest and most diverse organization of public health professionals in the world. The association
works to protect all Americans and their communities from preventable, serious health threats. APHA represents a broad
array of health officials, educators, environmentalists, policy-makers and health providers at all levels working both
within and outside governmental organizations and educational institutions. http://www.apha.org/]
The American Rehabilitation Counseling Association is an organization of rehabilitation counseling practitioners,
educators, and students who are concerned with improving the lives of people with disabilities and enhancing their
development throughout their life span They work to promote excellence in the rehabilitation counseling profession
rehabilitation in counseling practice, research, consultation, and professional development.
[http://www.arcaweb.org/Home/tabid/36/Default.aspx]
The Association for Community Organization and Social Administration is a membership organization for community
organizers, activists, nonprofit administrators, community builders, policy practitioners, students and educators.
[http://www.acosa.org/]
The Association of VA Social Workers encourages development of comprehensive Social Work services to veteran
beneficiaries through education and training, leadership, promotion, and the sharing of information to enhance the
effectiveness of Social Work. The Association advocates for the recruitment, retention, and increased recognition of VA
- 93 -
Social Workers. To accomplish the purpose, the Association collaborates with established social work organizations and
other such organizations as relevant to social work practice and social work services in health care settings.
[http://www.vasocialworkers.org/]
The Canadian Association of Social Workers is a federation of nine provincial and one territorial social work
organizations, the Canadian Association of Social Workers (CASW) provides a national leadership role in strengthening
and advancing the social work profession in Canada. www.casw-acts.ca/. To view Social Work in Canada go to
http://www.casw-acts.ca/canada/main_e.htm.
The Consortium for Spinal Cord Medicine is centered around evidence-based clinical practice guidelines to serve as
recommendations to health care providers based on current research findings that expert methodologists have graded for
their scientific strength and validity. Using scientific research and consumer input, the Consortium updates these
guidelines and develops new ones and promotes a SCI/D research agenda that encourages scientific rigor and outcome
evaluation. These clinical practice guidelines are intended for health care professionals with companion consumer guides
available to help people living with SCI/D put this information to use in their daily lives. These and publications provide
guidance and address questions on SCI/D subjects ranging from pressure ulcers to bowel care to expected outcomes one
year out from injury. Some consumer guides are available in Spanish. There are Printed and downloadable versions of
the clinical practice guidelines. [http://www.pva.org/site/PageServer?pagename=pubs_main]
The Council on Social Work Education is (CSWE) is a nonprofit national association representing more than 3,000
individual members as well as graduate and undergraduate programs of professional social work education. Founded in
1952, this partnership of educational and professional institutions, social welfare agencies, and private citizens is
recognized by the Council for Higher Education Accreditation as the sole accrediting agency for social work education
in this country. [http://www.cswe.org/CSWE/About/] To view upcoming events go to
http://www.cswe.org/CSWE/meetings/calendar/
Influencing State Policy (ISP) assists social work faculty and students in learning to effectively influence the formation,
implementation, and evaluation of state - level policy and legislation. Please explore our site to learn more about ISP and
- 94 -
use the resources provided. To begin using this site, please click on the flag to the left and see what new policies or
programs are developing in your state as well as the latest, "breaking" news. http://www.statepolicy.org/
The Model Systems Knowledge Translation Center (MSKTC) summarizes research, identifies health information needs
and develops systems for sharing information for the NIDRR model systems programs in traumatic brain injury, spinal
cord injury and burn injury. http://www.mscisdisseminationcenter.org/, Traumatic Brain Injury, Spinal Cord Injury ,
Burn Injury, About Us
Spinal Cord Injury, Looking for information? ,For information about patient care, local resources, and to
participate in local research projects, contact your regional Model Spinal Cord Injury System. For general SCI
information, consult our Resource page.
What can you find at this site? Currently, you can find the following content on this site: A Database of SCI
Model System Research Publications. This searchable database contains the peer-reviewed publications produced by the
Model SCI Systems. An overview of the 14 Model SCI Systems and their contact information. A resource list of major
spinal cord injury organizations. What are the ongoing projects at the MSKTC? Systematic reviews of the research
evidence. We compile, evaluate and summarize the published research evidence relating to a particular topic in order to
provide practitioners, consumers and others with the best and latest information available for making health decisions.
Technical Assistance for Model Systems. We are developing materials to assist the Model Systems in providing
accessible, user-friendly information to consumers and other audiences.
NIDRR Grant #H133A060070 | Contact Us | Copyright | ©2007 University of Washington
The Multiple Sclerosis Association of America (MSAA) is an organization whose mission is to enrich the quality of life
for everyone affected by multiple sclerosis. They have a wide array of programs and services and bring ongoing support
and direct services to people with MS and their families throughout the country. MSAA also serves to promote greater
understanding of multiple sclerosis and the diverse needs and challenges of people with MS. Their website includes
information and the latest research news, [http://www.msaa.com/]
The National Association of Social Workers (NASW) is the largest membership organization of professional social
workers in the world. They work to enhance the professional growth and development of its members, to create and
maintain professional standards, and to advance sound social policies [http://www.socialworkers.org/] NASW has
- 95 -
created a Portal http://www.socialworkers.org/swportal/ which includes Social Work Organizations and NASW
Chapters. WebEd is the venue for online course offerings. [http://www.naswwebed.org/]. Advocacy information is
available at http://www.socialworkers.org/advocacy/answer/events/default.asp.
The National Database of Educational Resources on Spinal Cord Injury contains information about materials such as
videotapes, audiotapes, and written materials on SCI topics such as employment, exercise, nutrition, rehabilitation and
many others. This will soon be available through the Texas Model Spinal Cord Injury System website in Houston, Texas
at www.texasmscis.org.
The National Multiple Sclerosis Society is a collective of passionate individuals who want to do something about MS
now—to move together toward a world free of multiple sclerosis. MS stops people from moving. We exist to make sure
it doesn't. We help each person address the challenges of living with MS through our 50-state network of chapters. The
Society helps people affected by MS by funding cutting-edge research, driving change through advocacy, facilitating
professional education, and providing programs and services that help people with MS and their families move their lives
forward. http://www.nationalmssociety.org/about-the-society/index.aspx
The National Network for Social Work Managers is dedicated to equipping people-centered leaders. The Network began
in 1985 and was incorporated in 1987. It is recognized as a 501c(6) membership organization. Individual members are
middle and upper level managers who come from 38 states and two countries outside the U.S. 0rganizational members
include educational institutions, service agencies and a variety of private organizations. [www.socialworkmanager.org/]
The National Rehabilitation Association (NRA) is a member organization whose mission is to promote ethical and
excellent practice in rehabilitation. They are an organization of diverse professionals committed to the empowerment of
all people with disabilities. Not long after Congress passed the National Rehabilitation Act of 1920, the National
Rehabilitation Association (NRA) began its commitment to persons with disabilities. As the oldest and strongest
advocate for the rights of persons with disabilities, our mission is to provide advocacy, awareness and career
advancement for professionals in the fields of rehabilitation. Our members include rehab counselors, physical, speech
and occupational therapists, job trainers, consultants, independent living instructors and other professionals involved in
- 96 -
the advocacy of programs and services for people with disabilities. Seven core values provide the foundation for our
services and programs: all people, professions in rehabilitation, visionary leadership, responsible resource management,
advocacy, personal and professional enrichment and relationships built on trust and integrity.
[http://www.nationalrehab.org/website/history/index.html]
The National Rehabilitation Counseling Association (NRCA) was founded in 1958 as an organization to represent the
unique concerns of practicing rehabilitation counselors. Membership then consisted of primarily state/federal vocational
rehabilitation employees. Since that time, NRCA has continued to broaden its membership base, and expand benefits to
members. They are the largest national organization representing rehabilitation counselors practicing in a variety of work
settings: private non-profit agencies, hospital-medical settings, educational programs, private-for-profit businesses,
state/federal agencies, private practice, unions, and others. NRCA advances rehabilitation counseling as a profession and
dedicates itself to the pursuit of self fulfillment for all persons with disabilities. Effective November 1, 2005 the National
Rehabilitation Counseling Association (NRCA) withdrew from divisional status of the National Rehabilitation
Association (NRA) and became an independent organization. The goal is to focus more attention on the pressing issues
affecting the lives of people with disabilities as well as profession of rehabilitation counseling. NRCA became
incorporated as a professional association of rehabilitation counselors in 1966. For more information go to http://nrcanet.org/files/listserv_announcement_Oct_30_2005.doc. To learn more about the history of NRCA prior to 2006 go to
http://www.nationalrehab.org/website/history/index.html. http://nrcanet.org/Symposium/2007%20Symposium%20Flyer.pdf
The National Spinal Cord Injury Association was founded in 1948. It the nation's oldest and largest civilian organization
dedicated to improving the quality of life for hundreds of thousands of Americans living with the results of spinal cord
injury and disease (SCI/D) and their families. This number grows by thirty newly-injured people each day. They provide
education empowerment to individuals with spinal cord injury and disease to achieve and maintain their highest levels of
independence, health and personal fulfillment. They provide an innovative Peer Support Network and raise awareness
about spinal cord injury and disease through education. The education programs are developed to address information
and issues important to our constituency, policy makers, the general public, and the media, and including injury
prevention, improvements in medical, rehabilitative and supportive services, research and public policy formulation. SCI
- 97 -
Life SCI Life is the quarterly publication of NSCIA, which is mailed to every NSCIA member and also distributed to
thousands of others interested or working in the area of SCI/D.
[http://www.spinalcord.org/]
Paralyzed Veterans of America (PVA) works to maximize the quality of life for its members and all people with SCI/D
as a leading advocate for health care, SCI/D research and education, veterans’benefits and rights, accessibility and the
removal of architectural barriers, sports programs, and disability rights. Call, go to their website or email them for
information about events, chapters, the National Headquarters and Service Offices.
[http://www.pva.org/site/PageServer?pagename=homepage]
The Rehabilitation Engineering Society of North America (RESNA) is an interdisciplinary association of people with a
common interest in technology and disability. Its purpose is to improve the potential of people with disabilities to
achieve their goals through the use of technology. They serve that purpose by promoting research, development,
education, advocacy and provision of technology; and by supporting the people engaged in these activities.
[http://www.resna.org/index.php]
Rehabilitation Psychology Division 22 of the American Psychological Association was established in 1956 as one of the
earliest Divisions in APA. Psychologists have worked in medical rehabilitation settings for more than a half century,
long before psychologists were regularly involved in other health care settings. Division 22 members conducted the early
research on individual, interpersonal and social changes related to changes in appearance and physical capacity, as well
as the social psychology of stereotyping and prejudice faced by persons with disability. Members were among the
pioneers helping psychology understand the world of work, how this can be affected by impairment and disability, and
issues about vocational rehabilitation. They have worked to change attitudes towards persons with disability from pity,
charity and aversion to understanding and acceptance. Rehab. Psychology initiated a focus on issues of children and
adolescents with disabilities and chronic conditions, recognizing the need for special health and social care for these
individuals. [http://www.apa.org/divisions/div22/history.html]
- 98 -
The Social Welfare Action Alliance is a national organization of progressive workers in social welfare. They send out
“
Advocacy Alerts”emails where immediate response is needed at www.socialwelfareactionalliance.org/.
The Social Work Health Leadership Foundation (SWHLF) was established in 2005 by members of the Society for Social
Work Leadership in Health Care to support the advancement of social work leadership in health care and eventually fund
research in the field. http://www.sswlhc.org/html/swhlf.html.
The Society for Social Work Leadership in Health Care is an association dedicated to promoting the universal
availability, accessibility, coordination, and effectiveness of health care that addresses the psychosocial components of
health and illness. [http://www.sswlhc.org/html/overview.html]
TASH is an international membership association leading the way to inclusive communities through research, education,
and advocacy. TASH members are people with disabilities, family members, fellow citizens, advocates, and
professionals working together to create change and build capacity so that all people, no matter their perceived level of
disability, are included in all aspects of society. There are twenty-five chapters and thousands of members from thirtyfour different countries and territories. Since it’
s inception over thirty years ago, TASH has gained international acclaim
for our uncompromising stand against separatism, stigmatization, abuse and neglect. We actively promote the full
inclusion and participation of persons with disabilities in all aspects of life. TASH believes that no one with a disability
should be forced to live, work, or learn in a segregated setting; that all individuals deserve the right to direct their own
lives. TASH 's mission is to eliminate physical and social obstacles that prevent equity, diversity, and quality of life.
WHAT DOES “
TASH”STAND FOR? Many people want to know what the acronym TASH stands for. Here's a brief
history of the organization's names. When TASH was started in 1974, it was called the American Association for the
Education of the Severely / Profoundly Handicapped and went by the acronym: AAESPH. In 1980 the name was
changed to The Association for the Severely Handicapped, reflecting TASH's broader mission. The name was changed
to The Association for Persons with Severe Handicaps in 1983 but the acronym, TASH, continued to be used. In 1995,
the Board voted to maintain the acronym because it was so widely recognized but to stop using the full name of the
organization as it didn't reflect current values and directions. http://www.tash.org/who_we_are.html
- 99 -
United Cerebral Palsy (UCP) is a source of information on cerebral palsy and is a pivotal advocate for the rights of
persons with any disability. As one of the largest health charities in America, the UCP mission is to advance the
independence, productivity and full citizenship of people with disabilities through an affiliate network. To learn more
about UCP, please visit http://www.ucp.org/.
United Spinal Association is a 501(c)(3) nonprofit membership organization. Our mission is to provide expertise, create
access to resources and strengthen hope thereby enabling people with spinal cord injuries and disorders (SCI/D) to fulfill
their potential as active members of their communities. We accomplish our mission by: ensuring quality health care,
promoting research, advocating for civil rights and independence, educating the public and enlisting its help and
expanding opportunities for all paralyzed Americans. [http://www.unitedspinal.org/]
Jayne Kleinman, MS, CR, works at Kleinman Consulting, LLC in Meriden, Connecticut.
- 100 -
Save the Date!
International Federation of Social Workers
World Conference 2008The Challenge of Ensuring Rights in a Global and Unequal
Society
Salvador de Bahia, Brazil,
August 16–
19, 2008.
http://www.socialwork2008.com
IFSW General Meeting will taking place in Salvador de Bahia,
August 13–15, 2008
Contact:
Tom Johannesen
Secretary General
International Federation of Social Workers
Postfach 6875, Schwarztorstrasse 22
CH-3001 Berne, SWITZERLAND
Tel (41) 31 382 6015
Fax (41) 31 382 1125
E-mail: global@ifsw.org
Web: http://www.ifsw.org
__._,_.___
Bring Home a Souvenir!
Join us at the 2008 Congress of
Spinal Cord Medicine & Rehabilitation
August 11-13, Gaylord Palms Resort &
Convention Center, Kissimmee, Florida
www.spinalcordcongress.org
- 101 -

SCI Psychosocial Process 21 - Academy of Spinal Cord Injury

Transcription

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