CATCH Team - Chester County Intermediate Unit
Transcription
CATCH Team - Chester County Intermediate Unit
CATCH Team (Childhood Autism Team CHeck) GUIDEBOOK “The CATCH Team works to bring the medical, educational, and behavioral health systems together to create a single point of entry to develop a plan of care for a child suspected of having autism that encompasses intake, evaluation, diagnosis, and recommendations for interventions with one case manager to coordinate with families.” FUNDING PROVIDED FOR THE DEVELOPMENT OF THIS GUIDEBOOK IS THROUGH DEPARTMENT OF PUBLIC WELFARE / BUREAU OF AUTISM SERVICES Development of the CATCH Team Guidebook through the Chester County CATCH Team and through facilitation of the Luzerne County CATCH Team: Brenda Eaton-Shadie Developer/Administrator Angela Conser- Case Manager Suzanne Muench- Case Manager Sarina Sweeney- School Psychologist Jackie Bryant- School Psychologist Kristy Van Campen- School Psychologist Denise White- School Psychologist Michelle Davis- Service Coordinator Manager, Chester Co. Early Intervention Nicole Cartwright- BHRS Case Management Supervisor, EAS Clinician Questions: Contact Brenda Eaton at 484-237-5354 or e-mail at CCIU, brendae@cciu.org. 0 Table of Contents I. WHAT IS THE CATCH TEAM? . . . . page 2 II. DEVELOPMENT OF A CATCH TEAM . . . . page 5 III. WHAT IS THE REFERRAL PROCESS FOR THE CATCH TEAM? . page 8 IV. EVALUATION OF CANDIDATES FOR THE CATCH TEAM . page 10 V. OBSERVATION . . . page 13 VI. HOW TO DISCUSS THE CATCH TEAM REFERRAL . . page 15 VII. ROLE OF THE CASE MANAGER . . . page 17 VIII. DAY OF ASSESSMENT AND MEMBERS OF THE CATCH TEAM . page 18 IX. WHAT IS THE ADOS? X. XI. . . . . . page 19 WHAT HAPPENS AFTER THE ASSESSMENT? . . . page 20 FEEDBACK SESSION . . . . . . . . APPENDIX . . . . . . . . . page 21 . . . . . . page 22 1 ~I~ WHAT IS THE CATCH TEAM? With this concept being a recommendation from the Early Intervention Sub-committee Report from the PA State Autism Task Force, Brenda Eaton, the facilitator of the Early Intervention Sub-committee report, approached Dr. Levy from CHOP and the Administrators with-in Chester County to discuss the concept. As a result of these discussions, meetings were held to discuss system issues, regulations, and how to blend and braid systems. A plan was formulated, and we began to see children in Chester County in August of 2005. Today, we have refined out process, and have had over 100 children referred to the CATCH Team, with an approximate rate of 80% being identified with an Autism Spectrum Disorder. The Administrative Team included the following members: Administrative CATCH Team Regional Autism Center and Children’s Hospital of Philadelphia (CHOP) •Developmental Pediatrician, Dr. Susan Levy Chester County Dept. of Mental Health/Mental Retardation •Birth to 3 years Early Intervention Mental Health Department Chester County Dept. of Human Services of Chester County Chester County Intermediate Unit •Three to 5 years Early Intervention Chester County Dept. of Human Services Community Care Behavioral Health Chester County Behavioral Health Providers Through county-wide collaboration in Chester County, meetings were held by the Administrative CATCH (Childhood Autism Team CHeck) Team to discuss the possible process and procedures necessary to make the CATCH Team a reality. In light of the increasing incidence of autism, (current rate 1-150 from the CDC 2007) there is a growing need to address the concerns of families and children affected by this disorder. Issues with early identification, coordination of services, and meeting the needs of families with children on the autism spectrum have become a major focus of many serving systems. The Pennsylvania Autism Task Force Report, the Early Intervention Sub-committee report, as well as other Sub-committee Task Force reports 2 highlighted the fact that several systems serve children with autism, but none are coordinated to work together. Too often, families are on their own to seek out professionals to make a diagnosis and then left to sort through the various agencies and systems that could provide support and services. Once parents find their way into the various systems, they were left to be the coordinator for their child’s services, negotiating the maze of medical, educational, and behavioral health systems. The CATCH Team was designed to increase the rate at which children are identified at an early age, and to provide a streamlined and family friendly evaluation process. With this method for coordination of services for families and for the children suspected of having an Autism Spectrum Disorder, the CATCH Team can function as a single point of entry to all serving systems. The CATCH Team works to bring the medical, educational, and behavioral health systems together to create this single point of entry to develop a plan of care for a child that encompasses intake, evaluation, diagnosis, and recommendations with one case manager to coordinate with families. The CATCH Team was developed to address the following barriers and obstacles: - To develop a multi-disciplinary system of care diagnostic process to involve medical/physical health, Early Intervention, education and behavioral health. All systems to participate in a streamlined process to share information, communicate more effectively, and participate in pediatric diagnostic evaluation and creation of an initial single comprehensive plan of care. - Families have identified the strong preference to have diagnostic evaluations conducted by developmental pediatricians. It is a known fact that families can wait upward of one to two years for an initial appointment for a diagnosis. - Families continually identify the difficulty of relaying “their story” to numerous agencies, doctors and providers, often repeating the same demographics and course of treatment/history over and over. - Families and agencies often feel that treatment goals, plans, interventions and outcomes are not coordinated or shared across systems. - Families often express being overwhelmed by the various systems logistics, requirements, next steps and insurance issues. 3 The goals of the CATCH Team: - To identify children between the ages of 0-5 years old who may be at risk for a diagnosis of autism. - To implement standardized practices for children identified with developmental delays through Early Intervention for autism using the M-CHAT, and dialogue with families about the results of the screening. - To implement a referral process to the CATCH Team to reduce the wait time for a developmental pediatrician to conduct an evaluation at a site convenient for families. - To use a standardized and research based evaluation tool, the ADOS (Autism Diagnostic Observation Schedule), administered by trained staff. - To have cross systems representatives (medical, education, Early Intervention and behavioral health) participate in the observation of the evaluation and engage in a post-evaluation discussion with the evaluators. - To have such representatives discuss and agree upon an initial single plan of care following the evaluation. - To ensure timely feedback to the families regarding the results of the evaluation and review of the recommendations for the next steps in the plan of care. - To provide the family with direct face-to-face contact with the CATCH Team Case Manager and representatives from the behavioral health system to increase the likelihood for followthru and continuity of care. - To identify case management practices, roles and responsibilities to assist families accessing the necessary resources and appointments. Responsibilities can include follow-up and coordination of the initial plan of care, including applying for MA. 4 ~II~ DEVELOPMENT OF A CATCH TEAM The CATCH Team being comprised of several serving systems, having buy-in from each system’s representatives locally is a necessity. It is also suggested that the development of an Administrative CATCH Team be established made up of system administrators, as was developed in Chester County, working in the same fashion, to address the same barriers and obstacles, and to address the same goals. NOTE: Please keep in mind that the material contained in this Guidebook is specific to systems and processes found with-in Chester County, and the processes and procedures may need to be adapted based on the county, and the local system dynamics. The identification of a facilitator who is familiar with county dynamics would be a benefit, but someone with good facilitation and organizational skills would also be ideal to take the lead. Systems and administrators have to be open and willing to discuss their processes and regulations with the group and facilitator in order to identify how to blend and braid a process for the CATCH Team with-in the county. A “Team Approach” is required and defined as, “a number of people organized to function cooperatively as a group” and should be the tone of the meetings. Discussion needs to focus on regulations, mandates, and difficulties encountered with each system, and how they can be addressed. As this discussion takes place, gathering information on paperwork, forms, releases and staffing should be considered and noted. Systems, departments and agencies to include in an Administrative CATCH Team can mirror the members of the Chester County Administrative CATCH Team from the list provided. A forum for discussion of the development of a CATCH Team could take place at a variety of meetings such as the LICC (Local Interagency Coordinating Council) which is a joint meeting of the Early Intervention Infant and Toddler Program and the Preschool Special Education Program. Another possibility is at the county office where stakeholders may meet to discuss children services. Also, some counties have autism specific work groups, Coalitions or Alliances. As consensus is reached, and processes and procedures are being identified, and forms and releases are considered, the following checklist will be helpful to complete the process to set up the CATCH Team with-in the county. (See CATCH Team PowerPoint and Algorithm for the CATCH Team attached for more information.) 5 CATCH Team Planning Checklist _____ Identification of an Administrator, or lead coordinator to oversee the process and deal with issues and concerns that come up, as needed, as the CATCH Team develops. _____ The identification of a Masters Level Caseworker (check credentials to bill Medical Assistance) _____ Location, such as an assessment room with one-way mirror with observation room with a conference room that has internet access, printer and copy machine available. _____ Developmental Pediatrician _____ Behavioral Health Rehabiliation representatives _____ Determine in-kind (sustainable funding) and what will need to be funded and by which system _____ Start-up costs for trainings such as the ADOS, ADOS kit, Manuals, ADOS Modules, computer, camera if taping, Polaroid camera to take intake photo, secure file cabinet, and assorted office supplies. _____ Training and Meeting location(s). 6 7 ~ III~ WHAT IS THE REFERRAL PROCESS FOR THE CATCH TEAM? Ideally, the point of entry should be when a child is screened at a pediatric visit, and then referred to Early Intervention if delays are noted, but 70% of our children with developmental disorders are not detected by primary care providers (Palfrey et al. J PEDS. 1994). The National American Academy of Pediatrics’ (AAP) current Policy Statement recommends developmental screenings at 9-, 18-, and 30-month visits with an autism specific screen, such as the M-CHAT. (Modified Checklist for Autism in Toddlers) to find the M-CHAT and other helpful screening tools, go to www.firstsigns.org. To access the full Policy statement see the following website: Site: http://pediatrics.aappublications.org/cgi/content/full/118/1/405 The CATCH Team point of entry is through Early Intervention (EI) or the Preschool Special Education (PSE) Program depending on the child’s age. Many times, children who may present with signs of autism are delayed in several areas. Even if a family is not currently in EI, we ask the family to call Early Intervention or Preschool Special Education first, so the child can begin to receive services as soon as possible, and have them do their Intake. In Chester County Early Intervention (0-3years), all children are screened with the M-CHAT. The MCHAT is a parent driven screening tool with 23 questions to tease out concerns and behaviors that can indicate the child may be at risk for an Autism Spectrum Disorder (ASD) diagnosis. At the Chester County Intermediate Unit, (3-5 years) Preschool Special Education Program, a child who is 4 years and under, the M-CHAT can be used as a screening tool although some professionals express concern of false negatives you may get due to the age of the child. If the child is 4 years old or older the evaluator should consider the use the Social Communication Questionnaire (SCQ) or other type of screen that can be found on the National AAP website given above or, the PA Autism Assessment and Diagnosis Expert Workgroup provides a list of autism screeners as well. 8 NOTES: 9 ~IV~ EVALUATION OF CANDIDATES FOR THE CATCH TEAM When working with a family and the topic of screening comes up, explaining the AAP’s recommendations for children to receive an autism specific screener at 18 months could be a viable explanation if parents are concerned why the evaluator is using an autism screener with their child. If the child passes the M-CHAT or SCQ and there are no other red flags, then the evaluator should continue their Early Intervention evaluation. If the child passes the M-CHAT or the SCQ, and there are considerable red flags, or if the child fails the M-CHAT, or the SCQ, the evaluator should further interview the parents. The first question to the parents might be to ask what made them seek Early Intervention. Some parents might already have concerns that their child is on the Autism Spectrum while other parents do not really know what characterizes a child with Autism Spectrum Disorder. Determine if the parents have expressed their concerns to their pediatrician or if their pediatrician has expressed concerns to them. At this time, the evaluator might want to discuss their concerns with the parents. It may be helpful to mention a concern and ask the parents if they have ever been concerned about that same thing. For example, if the evaluator observes a child flapping, the evaluator might say to the parent, “Have you seen Billy do that before?” or “How often does Billy make that movement with his arms?” If the evaluator is not ready to address the concerns with the parents the evaluator could discuss weather or not the parents have been referred to a Developmental Pediatrician. If the parents have contacted a Developmental Pediatrician, it is important to determine how far away their appointment is. If the parents have not contacted a Developmental Pediatrician, or will be waiting for more than a couple of months to be evaluated by the Developmental Pediatrician, consideration should be taken when discussing the CATCH Team. Providing the option for an earlier date through the CATCH Team is often a welcome alternative, as our wait time is from 10 weeks to 2.5 months. In Chester County, our Developmental Pediatrician is from CHOP (Children’s Hospital of Philadelphia), and provides the same assessment as would be done at CHOP but through the CATCH Team Process here in Chester County. CHOP also monitors their intakes and will not schedule with a family if they already have an appointment with the CATCH Team. We advise families to cancel their initial evaluation with CHOP if they are on a waiting list and schedule a 6-month follow-up instead. Through the CATCH Team a 6-month follow-up is recommended. 10 When interviewing with the parents the evaluator may want to start out with what the evaluator has observed. To further investigate whether or not there are other concerns that the evaluator had not observed or that the parents have not discussed, the evaluator may want to consider the items listed below or may want to use some of the probes from the Autism Diagnostic Interview (ADI). 1) Social Interaction Has little or no eye contact Does not gesture, wave bye-bye, point, finger to lips for shh Does not respond to name Does not initiate play with peers Do not respond to peers attempts to play with them 2) Communication Does not appropriately indicate needs and wants Answer questions Uses language when playing appropriate to their age Echoes words or repeat words or phrases over and over Makes sounds just to self stimulate or self soothe Repeats verbatim conversations from movies or books 3) Stereotyped Patterns of Behavior Has unusual motor behaviors or motor planning- pacing back and forth, clumsiness Odd hand and finger mannerisms- flapping Is preoccupied with certain toys or games, such as Thomas the train Lines up toys or objects and becomes upset if the order is disturbed Do they seem preoccupied with parts of objects 4) Behavioral Concerns In addition, the evaluator should investigate if the child is exhibiting behavioral concerns. Some concerns of particular importance that would warrant behavioral intervention would be safety, task avoidance and aggression. Safety concerns could include, eloping in dangerous places, such as a parking lot, not responding to their name, not responding to stop, climbing on unsafe objects, or mouthing unsafe objects. Task avoidance concerns could include tantrums when asked to do something that the child does not want 11 to do. If the child tantrums, then the evaluator should determine how frequent, intense and the duration of the tantrums. Acts of aggression include aggression toward others as well as to self. If a parent has any of these behavioral concerns, this child would be a candidate for Behavioral Health services and may be a good candidate for the CATCH team. The evaluator may determine priority of who goes to the CATCH team based on their need for a diagnosis, a developmental pediatrician and the severity of their behaviors. Evaluators might give priority to the children who need 2 or 3 of the 4 things mentioned above rather than just one. If the evaluator has determined that the child would be appropriate for the CATCH team based on the information collected they should discuss these findings with the parents of the child, explain the CATCH team and determine if the family is interested. The evaluator should also call the CATCH team case manager to determine available appointments. 12 ~V~ OBSERVATION When possible, observe the child in different environments. Many very young children are in the home and may not be in other settings. But for those in daycare and preschool, these different environments can provide important information. Observation has the advantage of tapping into behaviors within natural contexts. It is important to schedule the observation at a time when the target behaviors are more likely to occur. It is best to see the child in a setting such as a preschool or daycare where you can see communication skills, behaviors and social skills. Seeing the child in only one setting may not be sufficient, the observer may want to see the child at home and also in the preschool/daycare setting to get a complete observation across settings. Observers should be non-intrusive and neutral as possible. Use a running record type of observation, in which the observer records all the events as they occur naturally during the observation period. Highlight or make special note of behaviors that are related to the referral concern. These behaviors can be either positive behaviors or negative behaviors to rule in/rule out the question of autism spectrum disorder. It may be helpful to look for the following behaviors during the observation: Eye contact Non-verbal gestures Showing/Bringing Sharing things of interest Pointing out things of interest Repetitive or stereotyped language/phrases Repetitive play/preoccupation with objects Play (near peers, with peers or alone) Play skills (cause and effect, pretend, imaginative) Watching/observing peers and adults Imitating peers/adults (immediate or delayed) Initiating interaction with peers/adults (appropriate or inappropriate) Compliance with adult directions Repetitive motor movements 13 Some may find it helpful to develop a checklist, along with the running record, to help structure the observation and organize notes. Evaluators are required to gather a language sample to determine where a child falls with language skill development. This may partly be done previously if a Vineland Adaptive Behavior Rating Scale – Second Edition was completed, or by observing the child before the day of assessment, or within the first few minutes of administering the ADOS by the school psychologist. NOTES: 14 ~VI~ HOW TO DISCUSS THE CATCH TEAM REFERRAL WITH PARENTS WHEN THEIR CHILD SCREENS POSITIVE TO BE AT RISK FOR A DIGNOSIS OF ASD (AUTISM SPECTRUM DISORDER) When enough red flags have been identified, an observation has taken place, and history of the concerns have been discussed, it is time to discuss with the parents the CATCH TEAM. This is best done in person, rather than over the phone. The most important thing to have in mind is monitoring where the parents are in the grieving process of having a child with developmental delays. Some parents may have done their own research and are aware of the red flags for ASD, some may have a family member with the disorder, some may have heard about or seen a show on autism, but the majority of parents don’t know what the disorder is. This discussion is to inform them a little about what Autism Spectrum Disorders are and how their child is presenting with red flags. It should be emphasized that up to this point, no diagnosis is being made and that information is being collected. The parent should be made aware of the red flags that have been identified, and that their child has not been found to have the disorder at this time, but further evaluation from trained professionals is needed and that can take place with the CATCH Team. The professional meeting with the parents can introduce the CATCH packet and explain to them what is inside that should be filled out and what is needed for the evaluation to take place. This packet includes: - a letter explaining the CATCH Team - permission to evaluate - medical assistance application -medical history form -HIPPA form if not already signed (For the agency that will be holding the CATCH file.) Give an overview of the CATCH Team. Parents often find it comforting to have step-by-step details of what happens on the day of evaluation. SAMPLE CATCH EVALUATION DAY OVERVIEW 1. You will arrive and tell the secretary at the front door that you are here for the CATCH Team. 2. Someone from the team will come and get you and bring you downstairs where you will meet the evaluator. 3. The evaluator will explain how the assessment will be conducted and you will join him/her in the assessment room. 15 4. There will be a one way mirror and behind it the rest of the team of professionals will be watching. 5. When the evaluator is finished conducting the assessment, the Developmental Pediatrician will meet with you for sometime and conduct his/her interview to gather additional information. 6. At this point, you are finished for the day and go home. 7. The team of professionals gather to score the assessment and if appropriate make a diagnosis and recommendations, as necessary. When all of the preliminary information is gathered, it can be sent to the CATCH Team Case Manager should be added into the database for all to see. 16 ~VII~ ROLE OF THE CASE MANAGER The case manager serves a supportive role for families and an organizational and facilitative role for the Team. The case manager is an integral person in bringing systems together. This person needs to have a knowledge base in education and Behavioral Health services. Strong organizational skills, the ability to adapt to change, and counseling skills are also needed assets for the person in this position. A case manager solely, designated to facilitate an autism evaluation and also to support the family in receiving the appropriate services, after evaluation, is a unique feature of the CATCH Team. First and foremost, the case manager serves as a vital source of support for families whose children are evaluated by the CATCH Team. From the point of referral to questions related to their children, even years after evaluations, the case manager is available. The case manager is a person knowledgeable about educational, behavioral and community resources. The case manager supports and checks in with the family on regular intervals after the diagnosis, to help with follow- through of team recommendations and also serve as an information resource. She is also someone who keeps current on trends and recent findings in autism research. The case manger creates and facilitates workshops on topics of interest for the parents of children newly diagnosed with autism. The case manger is also the scheduling and resource manager for the team. She is the contact person with the office manager at the Regional Autism Center, who helps coordinate the CATCH team days with the developmental pediatrician’s schedule. Referrals from Early Intervention and from pre-school Special Ed. are all sent to the case manager. She reserves rooms, and resources for the day of the evaluations. As, well as copies and prints needed reports and materials. The case manager keeps on top of updating resource lists and materials for the families’ information packet to be given at the feedback meeting. The case manager attends all of the CATCH evaluations, feedbacks, and family trainings, to serve as a constant “friendly face” for families. For more information, including a “Timeline of Tasks, Processing Referrals, and Logging into the Database”, please see the “CATCH team processes” section of the guidebook, followed by the “CATCH Team Forms” section to understand data entry and timelines. 17 ~VIII~ DAY OF ASSESSMENT AND MEMBERS OF THE CATCH TEAM The CATCH Team is comprised of the many stakeholders that provide services to children and their families across systems including Birth to Three Early Intervention and their providers, Preschool Special Education, representatives from Behavioral Health Rehabilitation Services, and a Developmental Pediatrician. Participating in the evaluation is the CATCH Team Administrator, CATCH Team Case Manager, a Developmental Pediatrician, a School Psychologist from Preschool Special Education, a representative from a behavioral health agency, and Birth to Three providers (Occupational Therapy, Speech Therapy, teacher that works with the child) when appropriate. The ideal location would have a one-way mirror assessment room with an observation room. After introductions, the School Psychologist will facilitate the ADOS (Autism Diagnostic Observation Schedule) with the child and parents in the room, while the Developmental Pediatrician, Behavioral Health Staff and other CATCH Team Members observe and score the ADOS. This provides for a wonderful opportunity for the cross-system observers to have a discussion about the child as the assessment takes place. Once the ADOS is complete, the Developmental Pediatrician will meet with the family and ask any questions that may not have been answered in the Medical History, or through other questions and information provided from the MDE (Multidisciplinary Evaluation) or the IFSP (Individualized Family Service Plan) from 0-3 Early Intervention or ER (Evaluation Report) from 3-5 Preschool Special Education. The Developmental Pediatrician will also do a brief physical exam and discuss any medical concerns with the family. Once the Developmental Pediatrician has finished, the Case Manager will give the family an appointment to come back in two weeks for a feedback session. 18 ~IX~ WHAT IS THE ADOS? The Autism Diagnostic Observation Schedule (ADOS) is the gold standard for assessment of autism, and is used as an evaluation tool in the CATCH Team Process. The ADOS is a semi-structured, standardized assessment of communication, social interaction, and play for children who have been referred due to concerns about autism or other pervasive developmental disorders. The ADOS consists of standard activities that allow the examiners to observe behaviors that have been identified as contributing to the diagnosis of autism at different developmental levels and chronological ages. Structured activities and materials provide standard contexts in which social interactions, communication, and other behaviors relevant to autism spectrum disorder are observed. The ADOS is not a diagnostic tool by itself, and should be used in combination with others, such as the DSM-IV-TR, CARS(Childhood Autism Rating Scale) and other tools the Developmental Pediatrician and team are comfortable using. For more information on the ADOS, go to Western Psychological Services website: http://portal.wpspublish.com/portal/page?_pageid=53,70384&_dad=portal&_schema=PORTAL 19 ~X~ WHAT HAPPENS AFTER THE ASSESSMENT? When the evaluation is complete, and the family leaves, the rest of the team meets to review their observations and discuss overall ratings that are used to formulate a diagnosis through the use of the ADOS diagnostic algorithm. Each member of the team provides input for this process and helps develop the recommendations. The results of the ADOS as well as a rating scale completed by the Developmental Pediatrician are examined in light of the diagnostic criteria for autistic disorder outlined in the Diagnostic and Statistical Manual of Mental Disorders-IV-TR. The Behavioral Health clinician will assist in scoring the ADOS and provide a clinical impression during the formation of the evaluation report on whether the child requires behavioral health services and how quickly these services are needed. Children that exhibit strong elopement, self-injurious, or other potentially physically harmful behaviors can be recommended to be “fast-tracked,” meaning that the evaluation is written in a way that prescribes behavioral health services to occur within 60 days of the report. A report is generated with diagnostic information as well as recommendations for educational and behavioral health services with information on any medical follow-up if necessary. All of the information is entered into the database and is ready to be signed by the Developmental Pediatrician for the Feedback session in 2 weeks. 20 ~XI~ FEEDBACK SESSION The case manager schedules a follow-up meeting for the family at which time the results of the report are discussed with the evaluation team. The Developmental Pediatrician explains the medical diagnosis and concerns to the family, while the School Psychologist reviews the ADOS with the family to discuss what impressions where observed. Typically, the Behavioral Health clinician who attended the assessment would also attend the feedback session. The clinician will explain what behavioral health services are, how the services could be provided to the child and family for that child’s situation, and how to obtain the services. The clinician will discuss Medical Assistance, how it pays for behavioral health and other supplemental services, and how to apply. An application will be provided to the family and specific directions on how to apply for a child with a disability will also be provided during the feedback session. Parents are provided with the information needed to access systems and services and follow-up through the Case Manager who can assist with completing paperwork, providing resources and supports to the families. Through the CATCH Team process, parents of children with autism are provided with a timely and efficient system for evaluation and access to services. 21 Appendix 22 CATCH Team processes 1. Timeline of Tasks 2. Processing Referrals 3. Logging onto the Database 23 Catch Team-- Timeline of Tasks • Two Weeks Prior to CATCH Team o Information should be received from both Birth-3, and 3-5. If not, call the referring source for the child and request the information. You will need this no later than one week prior to the evaluation date. o Enter into database any information already received: medical history, IFSP evaluation results, etc. o Assure you have reserved the meeting room and testing rooms. • One Week Prior to CATCH Team o If information is not yet received for 0-3, email contact person. o If information is not yet received for 3-5 children, contact psychologist and ask them to enter the information. If medical history is still not received for 3-5 child, contact family again and inform them the information is critical. If they have lost the form, offer to email or fax a new form to them. o Email Dr. and the information for all kids. Inform them if information is not available and when you feel it might be. o Assure you have adequate copies of blank ADOS forms. If not, put request through copy center for more. o Make 5 copies of the completed report for the children who were previously evaluated. Copies go to EI, Pediatrician, Behavioral health, and 2 copies go to the family. (CATCH keeps original) o You can make up their feedback packets to include resource information, medical assistance application, copies of reports, “How to get follow-up” (see CATCH Team CD) , “What’s next?”(see CD), and any other applicable information. Put the feedback packet into the child’s file. 24 • Several days Prior to CATCH Team o Contact families to confirm appointment time and date and answer questions as needed. o Assure all information is included in database. o From the database, print out for Pediatrician copies of the “CATCH Team report”, “Developmental Pediatric Report”, and “Medical History” for each child. Even though it may not be complete, the doctor can take notes on these. Have copy of IFSP for 0-3 child available for Dr. , or MDE information from 3-5. o Gather copies of previous CATCH Team kid’s reports for the pediatrician and place all in a folder. o Email psychologists, other trained professional to find out who will be conducting the ADOS o Develop schedule for the day and email to team (BHRS, EI, Doctor and administrative support staff (see file on cd “samplescheduleCATCH.doc”) • Day of CATCH Team o Assure that cameras and laptops (if applicable are ready for the day) o Make sure a file box is stocked with blank ADOS forms, the files for the children being evaluated, and the file for the child who is having their feedback session in the afternoon. o The file box should also have in it pens, the camera, Ethernet cord, blank ADOS form, a few blank CARS, and the files. o Set up computer and phone in the conference room, and make sure someone in the reception area knows where to reach you when families and professionals arrive. o Put the file you made for Dr. containing the information for that day’s kids, as well as copies of reports from previous day’s evaluations for feedback at her place and include a copy of the schedule for the day. o Once the family has arrived, bring them to the assessment room and take a Polaroid photo of the child. Briefly explain the course of events for the day-1. ADOS, 2. Dr. , 3. team meeting to formulate report. Case manager should go back to speak with the 25 family after the evaluation to give appointment card (see file on CD) with feedback time. o Repeat x2 o Print out all reports when completed and be sure Dr. signs reports before she leaves. o Disconnect computer and bring all items back to desk. Secure files. • 2 weeks to One Month after CATCH Team Feedback o Follow up with families via phone call to check in with them about how things are going. Have they… completed the MA form… met with BHRS if applicable… met with IEP or IFSP team, begun follow-up process with Dr. ? • Three Months after CATCH Team Feedback o Send to families from the previous three months a CATCH Team survey with a self-addressed stamped envelope. “CATCH Family Surveys.doc” 26 Processing Referrals Birth-3 Referrals • Referrals come from support coordinators • Send email to director of Early Intervention for the county a few days before information is due if referral is not received • Coordinator should call to let you know that referral is being faxed, and you confirm with them that information is received, as well as who will be attending the evaluation. This should be limited to 2 outside people. • They will send the IFSP, consents, HIPAA form for agency holding CATCH information, medical history, and summary paragraph. • Generate letter to families with assessment time if referral is received at least 10 days prior to the evaluation-if not, call parents and introduce self and answer questions as needed. • Once information is received, it can be entered into the database. o Summary paragraph is typed into first text box in CATCH report o Testing results-found in the IFSP- are typed into the text boxes on the first DPR page (you may click “set results template” to enter IFSP info.) o Medical history information is put in the medical history section under the drop down box o You can begin the basic information for the medical history section of the DPR page one (Dr. will complete on day of eval) • Save copies of the CATCH report, Developmental Pediatrics report-page 1, and medical history as .pdf for Dr. and email to her as an attachment. It may be helpful to make a folder on your computer to save these files in. • For the day of evaluation, Dr. reviews copy of the IFSP, and a print out of the medical history form, CATCH report and Developmental pediatric report for her to take notes on. • Give the family the feedback appointment time/date before they leave for the day. • For the feedback session, you should make 5 copies of the report-2 for the family, 1 for Dr., 1 for EI, and 1 for Behavioral health. Keep the original in the file for future reference or for copies as needed. (Appointment cards found in “record keeping” folder on the CATCH CD). • At feedback, parents get their reports in a folder with information on how to obtain follow-up and what’s next after the CATCH Team. Additional reading material may be given as appropriate. We use: “Autism Overveiw: What We Know” by the NIH (www.nichd.nih.gov) and “ASD, PDD” by the NIMH (www.nimh.nih.gov) 27 3-5 Referrals • Referrals come from school psychologists • Once the psych has talked to the family about CATCH team and they have agreed to an evaluation, the psych will forward you contact information for that child including name, parents’ names, DOB, address, and phone number. • Contact families to introduce self and let them know you are going to send out a packet that contains information they need to send back to you and information about the CATCH Team process. • In this packet, Preschool Permission to evaluate form, Release form medical history form, HIPAA form for agency holding CATCH info. and CATCH Team Descriptions and Algorithm forms(all available in the Intake Folder on CATCH CD, except for the HIPAA). Include a self-addressed stamped envelope for them to send back the releases and medical history back to you. • Also in this packet you will include letter to families with assessment time and instructions about the day. • Once information is received, it can be entered into the database. o Medical history information is put in the medical history section under the drop down box o You can begin the basic information for the medical history section of the DPR page one • The school psychologist is responsible for entering into the database the following information at least one week prior to evaluation: o Summary/referral information in first text box on CATCH report o Testing results in boxes on page one of Developmental Pediatrician’s Report (DPR) • Save copies of the CATCH report, Developmental Pediatrics report-page 1, and medical history for Dr. and email to her as an attachment. Each child has a folder in the CATCH Team Kids folder • For the day of evaluation, receives a print out of the medical history, CATCH report, and Developmental pediatric report for her to take notes on. • On the day of eval, check in with families about when a good time would be for follow-up and let them know the school psych will schedule this with them. • For the feedback session, you should make 5 copies of the report-2 for the family, 1 for the Dr. , 1 for EI, and 1 for Behavioral health. Keep the original in the file for future reference or for copies as needed. • Parents get their reports in a folder with information on “How to get up follow”-up with the developmental pediatrician and “what’s next” after the CATCH Team. Additional reading material may be given as appropriate. (all found in the Feedback Folder on the CATCH Team CD) 28 Logging onto the CATCH Team Database • You must have File Maker Pro 8 on your computer. • The icon looks like this • Once this is installed and available, open the program. • At the top of the screen you will see the FileMaker tool bar. Click on File and go down to “Open Remote” • You will then get the following screen • Be sure the “View” field says “Local Hosts” and select File Maker Server 1 • From there select CATCHTeam from the list and click Open • The log in screen will then appear (This may vary depending on the location of your server_. 29 • Your login is your First and Last name • The password is “ catchdb “ • Once you fill in this information and login, you will get the main screen of the database. • Once on the main screen, you will have the option to search for a specific child or see the complete list of children. • It is recommended that you be connected to the database via an Ethernet connection versus wireless as the wireless has been known to cut out and unexpected quitting of the program will render un-stored information lost. 30 Entering information • To add a new child to the database, you must click on “Complete Child Listing” and then choose any child and select “Go to info” • Once you have this child’s information up, go to the open box in the top right hand corner above the green box that says “Go” and place cursor in box. This should bring up a drop down menu and you can select “Add new child” You will be given a blank entry to begin to add information. • That same box above the green box that says go will allow you to move between the reports needed. Simply click on the report needed and hit “go” Example of where to find the green GO box 31 Example of the drop down box choices. • There is no way to “save” the information per se on the database, but clicking out of one area into another will automatically store the information in the database. You should click out of the page you are working on periodically to assure information is being stored and to avoid losing work. 32 Medical History Form • From the drop down box, you can select Medical History Form • Once the information is given to you from the School Psychologist, or from EI, you can enter the information in. Take note to write exactly what the family writes. Example of the Medical History Form 33 • Some of the information entered on the Child information page will appear here in an effort to reduce entering duplicate information. • Once completed, this form will get saved and sent to the Pediatrician. 34 CATCH Report • This is the form in which the reason for referral is entered. If the child is a Birth-3 referral, enter the paragraph that EI sends. If the referral is for Preschool3-5 services, the school psychologist will enter this information. This is entered into this first large box. • The rest of the information on this page will be filled in once subsequent forms are filled in. The CATCH Team report in meant to be a compilation of all testing conducted on the day of valuation. 35 Developmental Pediatrics Report • The Developmental Pediatrics report has two pages-or fields-to it. Once you click on Developmental Pediatrics from the drop down box in the top right hand corner, you will see the main screen, which contains several large text boxes. • The first text box is to enter birth history of the child. Information gathered ahead of time is used to begin this, and the Pediatrician will help fill this out as the report is generated. • The second text box is for developmental history and the Pediatrician will fill this out. • The remaining text boxes are to record testing scores for the child o If the child is a Birth-3 referral, use the IFSP test results and enter in the Date of eval, age at eval, eval used, and results. o If the child is Preschool 3-5 referral, the school psychologist will enter this information. • This information is entered prior to the evaluation and saved and sent to the Pediatrician prior to the evaluation for her review. • When the report is being generated, the second page of the Developmental Pediatrics Report is used. In order to access this, click on the blue box in the upper right hand corner that says “Ped Report Page 2” This will bring up the next screen. 36 • On this page 2 the physical exam and testing results will be recorded 37 Example of the Testing Results 38 Example of Impression and Recommendations • In the recommendations section, there is a Yellow box that says “Set Recommendation Template” This is a pre-printed template with recommendations that can be edited and changed as needed. When you first arrive at this screen, the box will be blank until you click this box. It will ask you if you want to use the template and you must click yes. If you click this box a second time it will rest the template and not save any changes you may have made. • The information entered in here will be carried over to the CATCH Team report and will not need to be re-entered there. 39 Mental Status Exam • The Mental Status Exam is a check box form that needs to be filled out upon seeing the child for the evaluation, if they are being fast tracked.. 40 Initial Care Plan • The initial care plan is a document that incorporates the social history information for the child. It is also used when fast tracking. • The first text box will contain the Medical History information that was entered previously. You will see a yellow box next to the two text boxes. Once clicked the information from the appropriate place will be imported. You can add/delete from this information without it changing the text from the original location. • Here you will also enter the Diagnosis and Recommendations. The recommendation is cut and pasted from the Behavioral Health section of the recommendations on page 2 of the Developmental Pediatrics Report form. 41 Printing Reports • You can print reports in one of two ways o To print individual reports you can go to the page you want to print, then in the drop down menu above the green Go box, click on “Print Current Page” o To Print the final report once all information is entered and report is ready to be signed, in that same drop down box you can click on “Print Final Report” and it will print the CATCH Team Report, Developmental Pediatrics Report, Mental Status Exam, and Initial Care Plan. 42 Saving Reports in PDF format (only for individuals who need electronic access to information but do not have filemaker pro, i.e. developmental pediatrician) • When preparing to send information to pediatrician, you will need to save the CATCH report, the developmental pediatrics report, and the medical history as a PDF file that you can attach to an email to the doctor. • To do this, you must go to each of the three reports and once in a report, go to the toolbar at the top and under “File” click on Print. Once you click on print you will see the following screen. • Once open, click on the button that says “PDF” when you click on it you will get a drop down box, and you should select “Save as PDF”. It will then ask you where you want to save it and give you the option of naming the file. Name each file according to what it is: o for instance if it is a CATCH report for Suzy Sample, title it “S.Sample-CATCH.pdf” or “S. Sample-MEdhx.pdf” o The .pdf is added to the end to help those who are not working on Apple computers be able to recognize the file. So adding that at the end of the file name assures they will be able to open the file on a PC. • It is helpful to create a folder for that child under a “CATCH Team Kids” folder so that when you save these documents you can place them right into their folder. 43 CATCH Team Timeline – Desktop Guide About 4 weeks prior to CATCH team evaluation 1. Referring Source (Birth to 3, or 3-5 E.I.) notifies CATCH Case Manager of intent to refer. 2. Consents, Release, Agency Privacy Notice (HIPPA) and Medical History are acquired from the family. (Currently birth to 3 does this themselves, and 3-5 has the CATCH case manager). The family is also provided the CATCH algorithm and CATCH summary. 3. An intro. letter is mailed to families reminding them of their appointment date/time and an providing an overview of the days event for the evaluation About 2 weeks prior to CATCH team evaluation day 1. The child’s information is entered into the database (including demographics, reason for referral, medical history, Early Intervention Assessments go in the developmental pediatrician report page 1). 2. Contact Referring Source, if all information is not returned by family. 3. Assure that the resources (rooms, staff, materials, computer etc) are reserved for the day. One week prior to the CATCH team evaluation day 1. Email the Developmental Pediatrician and notify her that the information for each child is available in the database, or fax pertinent info. to the doctor . 2. Print the CATCH Report, and Developmental Pediatricians Report from database, for the doctor to take notes on during the evaluation. (This will mostly be blank at this time) 3. Make sure an adequate number of ADOS protocols are available for the assessments. 4. Print reports for children receiving feedback (if not done on evaluation day) for pediatrician to sign. (6 copies are needed for the feedback session). 44 Day of the CATCH team evaluation 1. Make sure that files and blank reports are accessible for the developmental pediatrician in the assessment room. 2. Have extra ADOS forms, pens, and CARS (or other assessment) available. 3. Set up computer to be used during report writing. 4. Greet family and assessment team. Take a picture of family and explain course of events. Give family an appointment card for their feedback at the end of assessment and contact information. 5. After the ADOS and medical exam, guide team to conference room to score instruments and input data in report. Case manager and pediatrician take turns typing. Completed report is printed and signed by doctor. 6. Repeat steps 1-5 for each evaluation. 7. Greet family arriving for feedback. 8. Provide each team member with a copy of the final report (doctor, early intervention, behavioral health, and parent (2). Retain one signed copy for the child’s CATCH file. Developmental Pediatrician leads feedback discussion. 9. Give the family a feedback packet containing information on the diagnosis, recommendations, follow-up instructions, and the medical assistance application. Two weeks after the CATCH team 1. Evaluation families from the previous team day come back for feedback. 2. Case manager calls families who received their feedback previously to investigate the status of follow-through on recommendations and determine the type of follow-up needed. Three months after CATCH team evaluation 1. Send families a CATCH team Family Survey with a self-addressed stamped envelope. Ongoing Endeavors of the CATCH team case manager 1. Send families CATCH team Newsletter, or other relevant resources. 2. Develop ongoing trainings for families (Overview of Systems, Potty-training, Autism Intro, etc). 2. Keep on-going data on family follow through with recommendations. 3. Remain available to answer questions and support families. 4. Participation in interagency and family community partnership meetings at the county level to advocate for families and the program in general. 5. Participate in ongoing education to stay informed on current trends in diagnosis and treatment of autism 45 CATCH Team Childhood Autism Team Check Name: _________________________________ Date Referral received from: Demographic information entered in database Family contacted to set up evaluation Packet mailed to family w/ intro letter Intro letter emailed to referring source Summary/paragraph entered into database Medical history received Releases received Medical history entered into database Information sent to Developmental Pediatrician Assessment attendance form signed Picture taken and put in file Family given feedback time/date Pediatrician report printed and signed Catch team report printed Feedback packet made w/ reports Feedback attendance form signed Packet given to behavioral health Packet given/sent to referring source 46 Schedule for CATCH Team May 22, 2007 Parkersville Conference Room 9:00 – 3:30 p.m, Testing Room 143 8:45 0-3 Family arrives 9:00-9:45 ADOS for Steven (testing room) 9:45-10:15 Medical Evaluation (testing room) 10:15-10:30 Scoring ADOS (conference room) 10:30-11:00 Formulate report for Steven (conference room) 10:45 3-5 family arrives 11:00-11:45 ADOS for Zachary 11:45-12:15 Medical evaluation 12:15-12:30 Scoring of ADOS 12:30-1:00 Formulate report for Zachary 1:00- 1:30 Lunch 1:15 3-5 Family Arrives 1:30-2:15 ADOS for Hailey 2:15-2:40 Medical evaluation 2:40- 3:10 Scoring ADOS 3:10-3:15 Formulate report for Hailey 3:30 Feedback for Jason (conference room) Have a good day! 47 CATCH Team CATCH Team Your feedback session with the CATCH Team is scheduled for: Day Date If you have questions, call Your feedback session with the CATCH Team is scheduled for: Day Time name Date Time If you have questions, call at xxx-xxx-xxxx CATCH Team CATCH Team Your feedback session with the CATCH Team is scheduled for: Day Date Your feedback session with the CATCH Team is scheduled for: Time Day If you have questions, call Date If you have questions, call 48 Time CATCH Team CATCH Team Your feedback session with the CATCH Team Your feedback session with the CATCH Team is scheduled for: is scheduled for: Day Date Time Day Date If you have questions, call If you have questions, call CATCH Team CATCH Team Time Your feedback session with the CATCH Team Your feedback session with the CATCH Team is scheduled for: is scheduled for: Day Date Time Day Date If you have questions, call If you have questions, call CATCH Team CATCH Team Time Your feedback session with the CATCH Team Your feedback session with the CATCH Team is scheduled for: is scheduled for: Day Date Time Day If you have questions, call Date If you have questions, call 49 Time CATCH Team Process Childhood Autism Team CHeck Intake for 0-3 & 3-5 Early Intervention M-Chat done by EI 18 months - 48 months Not at risk, continue on regular process EI At risk- Talk with familyCATCH Team option, while continuing regular process EI Release to share info. MA Application, Audiological, HIPPA Video release Intake processIntake Packet of Info Doctor/Developmental Ped. 0-3 Early Intervention 3-5 Early Intervention Behavioral Health Intake Assessment for DX CATCH Team Doctor Report and Recommendations Team meets/discuss recommendations Report and Feedback to the family with Dr. develop IFSP/IEP or revisions with CATCH Team recommendations B. Eaton 6/24/05 50 CATCH Proceso de Equipo CATCH Revisión en Equipo de Autismo Infantil (Childhood Autism Team Check) Ingresos para Programas de Intervención Temprana Entregas Información respecto de CATCH Cuestionario Médico Consulta programada ndada MCHAT completado 0-3 EI Con riesgo / sin riesgo En proceso regular en Intervención Temprana Conversación con familia – Opción de Equipo CATCH En proceso regular en Intervención Temprana Proceso de ingreso –Paquete de Información de Ingreso Doctor / Pediatra de Desarrollo Psicólogo realiza ADOS Personal 0-3 y 3-5 disponible Conclusión BHRS Evaluación para DX de Equipo CATCH Informe y Recomendaciones IFSP / IEP desarrollado o modificado por Informe En proceso regular en Intervención Temprana Informe y Retroalimentación con familia y equipo Solicitar MA Acceder a servicios BHRS Seguimiento por Coordinador de Caso de Equipo CATCH B. Eaton 13/07/2006 51 CATCH Team Childhood Autism Team Check - A Pilot Program The CATCH Team is made of the many stakeholders that provide services to families and their children in Chester County and contracted professionals to round out the lineup. Birth to 3 years Early Intervention / Mental Retardation Office of Chester County Three to 5 years Early Intervention / Chester County Intermediate Unit Office of Mental Health/Mental Retardation of Chester County Office of Human Services of Chester County Community Care Behavioral Health Chester County Providers Developmental Pediatrician Chester County has been aware of the need to address the growing concerns for families and individuals with autism for many years. The County offices that run and support the behavioral health services through Chester County’s Managed Care Organization (MCO), Community Care Behavioral Health (CCBH), serve hundreds of children. Of these children, 80-90% have an autism spectrum disorder. Early Intervention in Chester County that includes 0-3 Early Intervention and 3-5 Early Intervention come together to meet as the Local Interagency Coordinating Council (LICC). The LICC’s autism subcommittee as well as the public awareness subcommittee, see the difficulties with early identification, the difficulties with coordinated services and meeting the needs for families and their children on the Autism Spectrum. In February of 2002, the Intermediate Unit hired an Autism Network Coordinator, Brenda Eaton, to work full time in Chester County to build bridges and develop networks to improve communication and services for families and children dealing with an Autism Spectrum Disorder. Along with this focus, the Autism Network Coordinator facilitated the Early Intervention Subcommittee for the Pennsylvania Autism Task Force. Within the PA Autism Task Force Report, it was very clear in the Early Intervention Subcommittee Report, as well as many of the other reports, that there were several systems serving autism, but none of them coordinated and working together. Too often, families were left to find out about the diagnosis, seek out information about the various serving systems, leaving them confused and frustrated. Once they had found their way in the different serving systems, they were left to be the coordinator for their child’s services between medical, school and behavioral health care. From an Early Intervention recommendation of the Pennsylvania Autism Task Force Report, Chester County as a whole, is now working to bring the medical system, the education system and the behavioral health system together to create a single point of entry to develop a plan of care which will encompass intake, evaluation, and recommendations with one case manager to coordinate with families. 52 Equipo CATCH Revisión de Equipo por Autismo Infantil (Childhood Autism Team Check) - Un Programa Piloto El Equipo CATCH está compuesto por las diversas partes interesadas que proporcionan servicios a familias y sus niños en el Condado de Chester y profesionales contratados para completar el equipo. Nacimiento a 3 años Oficina de Intervención Temprana / Retardo Mental del Condado de Chester Tres a 5 años Intervención Temprana / Unidad Intermedia del Condado de Chester Oficina de Salud Mental / Retardo Mental del Condado de Chester Oficina de Servicios Humanos del Condado de Chester Cuidado Comunitario de Salud Conductual Proveedores del Condado de Chester Pediatra del Desarrollo El Condado de Chester ha estado consciente por muchos años de la necesidad de atender la creciente preocupación por familias e individuos con autismo. Las oficinas del Condado que realizan y apoyan los servicios de salud conductual a través de la Organización de Cuidado Administrado (MCO), Cuidado Comunitario de Salud Conductual (CCBH), atienden a cientos de niños. De estos niños, del 80 al 90% tienen un desorden de espectro autista. La Intervención Temprana en el Condado de Chester que incluye Intervención Temprana de 0 – 3 e Intervención Temprana de 3 – 5 se unen para tener sesiones como el Comité Local de Coordinación Interagencias (LICC). El subcomité de autismo de LICC así como el comité de conciencia pública, enfrentan las dificultades para una identificación temprana, las dificultades con servicios coordinados y con cumplir las necesidades de las familias y sus niños en el Espectro del Autismo. En febrero de 2002, la Unidad Intermedia contrató una Coordinadora de la Red de Autismo, Brenda Eaton, para trabajar tiempo completo en el Condado de Chester creando lazos y desarrollar redes para mejorar la comunicación y servicios para familias y niños que enfrentan un Desorden de Espectro Autista. Junto con este enfoque, La Coordinadora de Red de Autismo posibilitó el Subcomité de Intervención Temprana para el Grupo de Trabajo de Autismo de Pennsylvania. Dentro del Informe del Grupo de Trabajo, fue muy claro en el informe del Subcomité de Intervención Temprana, así como en muchos de los otros informes, que había varios sistemas atendiendo al autismo, pero ninguno de ellos coordinando y trabajando con otros. Con demasiada frecuencia, las familias eran abandonadas a buscar por si mismas un diagnóstico, buscar información respecto de los varios sistemas de servicios, dejándolas confundidas y frustradas. Una vez que hubiesen logrado orientarse en los diferentes sistemas de servicio, se les dejaba como coordinador para los servicios de su hijo entre cuidado médico, escolar, y de salud conductual. En base a una recomendación de Intervención Temprana del Informe del Grupo de Trabajo de Autismo de Pennsylvania, el Condado de Chester en su totalidad está ahora trabajando para unir el sistema médico, el sistema educacional, y el sistema de salud conductual para crear un único punto de entrada para desarrollar un plan de cuidado que incluya recepción, evaluación y recomendaciones con un administrador de caso para coordinar con las familias. 53 CATCH Team Childhood Autism Team Check Date: Dear : Welcome to the CATCH Team at the scheduled on at . . This letter confirms that has an evaluation We ask that you come to your appointment no later than so that the evaluation can begin on time and that you will have enough time with Dr. , the developmental pediatrician who will be evaluating . At times there are other professionals watching the evaluation behind a one-way mirror. This may include behavioral health clinicians, early intervention staff, case managers, and other CATCH Team members. This is done in an effort to minimize the number of assessments and intakes by the various systems that will serve you and your family. It will also help us to provide the most thorough and comprehensive evaluation of your child. will be given a test called the ADOS (Autism Diagnostic Observation Schedule) by the CATCH Team school psychologist. This is a play-based test that will look at your child’s play, communication, and social skills. You will be in the room with at all times, although we ask that you do not prompt your child’s behavior or direct their play while in the room—for example, hold back and see what they do with the bubbles on their own instead of saying ”Look at the bubbles.”. We also ask that you bring two small finger food type snacks that your child likes (examples include: goldfish, cookies, M&M’s, fruit puffs). We will put them into little containers to use as part of the testing. After the ADOS, Dr. will come into the room to go over the medical history form you filled out for us, and talk with you about your child’s development and growth. She will do a brief physical exam, after which time you are free to leave. The team members who observed will then meet to go over observations, concerns, and recommendations. A report will be generated and shared with you when you return for your feedback session, which is tentatively scheduled for at . Should you have any questions about the evaluation, please feel free to call me at . Sincerely, CATCH Team Case Manager 54 Equipo CATCH Revisión por Equipo de Autismo Infantil (Childhood Autism Team Check) Fecha: Estimado : Bienvenido al Equipo CATCH en el programada para el en . Esta carta confirma que tiene una evaluación . Le solicitamos llegue a la cita a más tardar a las para que la evaluación pueda comenzar a tiempo y tenga suficiente tiempo con el Dr. , el pediatra de desarrollo que evaluará a . A veces hay otros profesionales observando la evaluación tras un espejo unidireccional. Esto puede incluir especialistas clínicos de salud conductual, personal de intervención temprana, coordinadores de caso, y otros integrantes del Equipo CATCH. Esto se hace en un esfuerzo por minimizar el número de evaluaciones e ingresos en los diferentes sistemas que le atenderán a Ud. y a su familia. También nos ayudará a proporcionar una evaluación completa y profunda de su hijo. recibirá una evaluación llamada el ADOS (Autism Diagnostic Observation Schedule) por parte del psicólogo escolar del Equipo CATCH. Esta es una prueba en base a juegos que evaluará las habilidades de juego, comunicacionales y sociales de su hijo. Ud. estará en el cuarto con en todo momento, aunque le solicitamos que no intervenga en el comportamiento de su hijo ni dirija su juego mientras esté en el cuarto – por ejemplo, manténgase alejado y observe lo que hace con las burbujas por su cuenta en vez de decir “Mira las burbujas”. También le solicitamos que traiga alimentos que se puedan comer con la mano que a su hijo le gusten (ejemplos incluyen: galletas, M&Ms, fruta). Pondremos estos alimentos en pequeños envases para ser usados como parte de la evaluación. Después del ADOS, el Dr. entrará al cuarto para revisar el formulario de historial médico que Ud. llenó y hablará con Ud. respecto del desarrollo y crecimiento de su hijo. Le realizará un breve examen físico, después del cual podrán retirarse. Los integrantes del equipo que observaron a se reunirán para revisar las observaciones, preocupaciones, y recomendaciones. Se generará un informe que será compartido con UD. cuando vuelva para sus cita de seguimiento programada en forma tentativa para el a las . Si tiene alguna pregunta respecto de la evaluación, por favor llámeme al . Sinceramente, Coordinador de Caso de Equipo CATCH 55 CATCH Team Childhood Autism Team Check Medical History Today’s Date:______________________ Child’s name:________________________________________ Date of birth:______________________ Sex: M F Age:_________ years _________months School District: ______________________________________ Physician Name:___________________________________Phone number: _______________________ Physician Address:_____________________________________________________________________ Person completing this form:____________________________ Relationship to child:_______________ Has your child been diagnosed with any medical or developmental conditions? Yes If yes, please complete: Condition Date of Diagnosis No Given by whom ***If you need more room, please use other side of this page. Does your child receive any of the following services? Service When did it start? How often per week or month? Occupational Therapy Yes No Physical Therapy Yes No Speech Therapy Yes No Behavioral Therapy Yes No Early intervention/IU Yes No Where: Who provides services Prenatal History • Is child adopted in foster care If so, from what age? ___________________ • How old was mother when she became pregnant? ______________ • Did the mother have any health problems during pregnancy? Yes o • N/A No If yes, explain:____________________________________________________________ Did the mother use any prescription or non-prescription drugs during pregnancy? Yes No o If yes, explain:_____________________________________________________________ 56 Labor and Delivery • Where was the child born? ______________________________________________________________ • Was the delivery: Vaginal • Were there any complications? • If yes, explain:____________________________ • Was the baby full term? Yes • Baby’s birth weight: _______lbs, ________oz • Were there any of the following problems in the nursery? C-section Yes No Breech Don’t know No If no, early late by _____ weeks Baby’s length at birth: ______ inches Please explain if checked Was in NICU _________________________________________________________ Breathing problems Low oxygen Infection Needed ventilator _________________________________________________________ Feeding/sucking problems _________________________________________________ Tube feedings ____________________________________________________________ Jaundice ________________________________________________________________ Needed light therapy _______________________________________________________ Apnea _________________________________________________________________ GER (reflux) ____________________________________________________________ Other: ___________________________________________________________________ _____________________________________________________ ___________________________________________________________ ______________________________________________________________ Review of Systems Normal Abnormal Comments • Head, eyes, ears, nose, throat ! !_______________________ • Vision Screening (date:_________) ! !_______________________ • Hearing screening (date: ________) ! _______________________ • Heart ! ________________________ • Lungs ! ________________________ • Stomach/Intestinal/Constipation ! ________________________ • Skin _______________________ • Sleeping/Snoring _______________________ • Muscles/joints/bones ! ! _____________________ ! ! 57 • nervous system • !Nutrition/Diet ! • ! _______________________ ! _______________________ ! Please list any medications your child is currently taking (including vitamin supplements) None Medication • Dose Frequency Has your child ever been hospitalized or required surgery? Yes If yes, please complete: Date • No Reason Does your child have any allergies? Yes _____________________ No If yes, what are they? Behavioral History • Activity level of child: ! Normal • Emotionality: ! Happy ! Angry ! High ! Low ! Moody ! Depressed ! other: _______________ • Sociability with other children: ! Initiates play ! Ignores children ! Joins play ! Observes them ! Parallel play ! Intrudes on play ! Prefers adult interaction • What does your child like to do for play? ________________________________________ ____________________________________________________________________________ • Does your child have difficulty with any of the following behaviors (currently or past—please Behavior explain) How does child display this behavior (ie: hits, scratches, runs away) Aggression Hyperactivity Impulsivity Mouthing objects 58 Frequency Duration (How often does this happen# of times daily, weekly, month) (when did behavior begin/how long does it last when occurs) Non-compliance/not obeying Obsessive behavior Self-injury Self-stimulation Sleep difficulties Tantrums Family/Social History Name Age • Child’s Father ____________________ • Child’s Mother ___________________ o Marital Status: Single Occupation Employed _______ __________________________ _______ Married __________________________ Separated Divorced Y N Y N Partner o • Please list all of mother’s pregnancies and the outcome of each *Please use another sheet of paper if more space is needed** Year Outcome Name Sex !Living !Miscarriage Present Age ! Male Any developmental concerns ! Yes ! No If yes, what? ! Female !Living !Miscarriage ! Male ! Yes ! No If yes, what? ! Female !Living !Miscarriage ! Male ! Yes ! No If yes, what? ! Female • Is there a history of developmental concerns or medical concerns in the mother? Yes No If Yes, please explain: _________________________________________________________________ • Is there a history of developmental concerns or medical concerns in the father? Yes If Yes, please explain: ________________________________________________________________ • Who lives at home with the child? _______________________________________________________ 59 No _______________________________________________________________________________ • Does the child attend daycare/childcare? Yes No If Yes, where and how often? ___________________________________________________________ • What do you feel are your child’s strengths? ______________________________________________________________________________ _______________________________________________________________________________ • What are your concerns about your child? _______________________________________________________________________________ 60 Equipo CATCH Revisión de Equipo por Autismo Infantil (Childhood Autism Team Check) Historial Médico Fecha de Informe: ________________________ Nombre del Niño: ________________________ Sexo: O Masculino O Femenino Fecha de Nacimiento: _____________________ Edad al Momento del Informe: ____ Persona que Completa Informe: _____________ Parentesco con Niño: ___________ Proveedor de Servicios de Salud: ____________ Dirección del Proveedor de Servicios de Salud: ________________________________ Teléfono del Proveedor de Servicios de Salud: _________________________________ ¿Ha sido diagnosticado su hijo con algún problema médico o de desarrollo? O Sí O No Problema Fecha de Diagnóstico Diagnosticado por ¿Recibe su hijo alguno de estos servicios? ¿Cuando comenzó? ¿Con que frecuencia por semana o mes? Servicio Terapia Ocupacional Terapia Física Terapia de Lenguaje Terapia Conductual Terapia de Alimentación Intervención Temprana / UI ¿Donde? O Si O Si O Si O Si O Si O Si ¿Quien proporciona los Servicios? O NO O NO O NO O NO O NO O NO istorial de los Apoderados: Su Hijo es: O Adoptado O Bajo Cuidado Tutelar O N/A Si es así, ¿Desde qué edad? _________ ¿Qué edad tenía la madre cuando se embarazó? ___________ ¿Tuvo problemas de salud la madre durante el embarazo? O Si Si es así, explique: O No ¿Usó la madre algún medicamento recetado o no recetado durante el embarazo? O Si O No Si es así, explique: Trabajo de Parto y Nacimiento: El nacimiento fue: O Vaginal O Cesárea ¿Hubo Complicaciones? O Si O No O Parto Invertido 61 O No Sabe Si es así, explique: ¿Cumplió el bebé el período completo de gestación? O Si O No Si no: O Temprano O Tardío ¿Cuantas semanas? ___________ Peso del bebé al nacimiento: ___________ lbs. _________ oz. Largo: ____________ Hubo problemas en el pabellón de recién nacidos? O Si O No (Explique cada una que marque) __ Estuvo en NICU ______________________________________________________ __ Problemas de respiración: _______________________________________________ __ Poco oxígeno: ________________________________________________________ __ Infección: ___________________________________________________________ __ Necesitó Respirador: ___________________________________________________ __ Problemas de alimentación: _____________________________________________ __ Alimentación con sonda: _______________________________________________ __ Ictericia: ____________________________________________________________ __ Necesitó terapia de luz: _________________________________________________ __ Apnea: ______________________________________________________________ __ GER (reflujo): ________________________________________________________ __ Otro: _______________________________________________________________ Revisión de Sistemas: Cabeza, ojos, oídos, nariz, garganta: O Normal O Anormal _______________________ Revisión Visual – Fecha: _______ : O Normal O Anormal _______________________ Revisión de Oídos – Fecha: _____ : O Normal O Anormal _______________________ Corazón O Normal O Anormal _______________________ Pulmones O Normal O Anormal _______________________ Estómago/intestinos/estreñimiento O Normal O Anormal _______________________ Piel O Normal O Anormal _______________________ Sueño/ronquidos O Normal O Anormal _______________________ Músculos/articulaciones/huesos O Normal O Anormal _______________________ Neurológico (sistema nervioso) O Normal O Anormal _______________________ Nutrición/Dieta O Normal O Anormal _______________________ Por favor detalle cualquier medicamento que su hijo esté usando actualmente (incluyendo suplementos de vitaminas). ___ Ninguno Medicamento Dosis Frecuencia 62 ¿Tiene su hijo alergias? O Si O No Si es así, explique: ¿Ha sido hospitalizado o ha requerido cirugía su hijo? O Si O No Fecha Razón Historial Conductual Nivel de actividad del niño: O Normal O Alto O Bajo Emocionalidad: __ Feliz __ Enojado __ Melancólico __ Deprimido __ Otro Si Otro: _______________________________ Sociabilidad con otros niños: __ Ignora a niños __ Inicia juegos __ Observa a niños __ Se incorpora a juegos __ Juega en paralelo __ Invade juego __ Prefiere Interacción con adultos ¿Qué le gusta hacer a su hijo para jugar? Tiene dificultades su hijo con cualquiera de las siguientes (actualmente o en el pasado – por favor explique si marca la casilla): __ Agresión ____________________________________________________________ __ Hiperactividad _______________________________________________________ __ Impulsividad _________________________________________________________ __ Llevarse objetos a la boca _______________________________________________ __ No cumplimiento / no obediencia _________________________________________ __ Conductas obsesivas ___________________________________________________ __ Autoagresión _________________________________________________________ __ Autoestimulación _____________________________________________________ __ Dificultades para dormir ________________________________________________ __ Berrinches ___________________________________________________________ __ Otro ________________________________________________________________ 63 Historial Familiar Nombre Padre del Niño: _________________ Madre del Niño:_________________ Año Resultado Nombre Sexo Edad ______ ______ Edad Actual Profesión _______________________ _______________________ ¿Algún problema de desarrollo? Problemas Médicos y/o de Desarrollo de los Padres: Padre del Niño: _____________________________________________ Madre del Niño:_____________________________________________ 64 Release Forms When conducting evaluations using the CATCH team process please make sure you also use the following agency specific forms. An administration meeting between the collaborating agencies to agree on a protocol for consent s and releases may be helpful. 1. Permission to Evaluate (describing CATCH process and listing ADOS) 2. HIPPA form for agency that will retain the hard copy of all CATCH files. 3. Release forms for agencies not listed on the CATCH Team “Release form” 65 CATCH Team Childhood Autism Team Check Consent and Release Form As part of the CATCH Team Pilot Program, a videotape of your child’s assessment is being done to secure the evaluation session as a record for other professionals that may need to review the evaluation to make recommendations for services from various serving systems. As part of the CATCH Team Pilot Program, the observation of your child’s assessment will help to develop the plan of care for your child by allowing the Team to observe, make comment to each other, and discuss your child’s strengths, needs, and necessary supports. Additionally, a photo of you and your family is taken at the evaluation, which remains in your child’s record for the CATCH Team. After the feedback session, a copy of the final report will be given to the referring agency-either County Early Intervention or County Intermediate Unit Preschool program, and the behavioral health agency. The three items listed above will be used strictly for the use of the CATCH Team to develop a plan of care for your child, and to further develop the CATCH Team Pilot Program. The information and video will not be shared or reproduced in any way without your further permission. At times, information regarding the CATCH Team is presented in internal education sessions, grand rounds trainings, and other clinical training forums. Should your child’s information be considered for inclusion in those trainings, you will be contacted to sign further release information. Members of the CATCH Team that will observe may include staff from the following: • Birth to 3 years- Early Intervention / Mental Retardation County • Three to 5 years- Early Intervention / Intermediate Unit • Office of Mental Health/Mental Retardation of County • Office of Human Services of County • Community Care Behavioral Health • County Providers • Developmental Pediatrician When the CATCH Team is finished reviewing the video, the tape will be kept as a part of the child’s CATCH Team record. I herby approve of the following (please circle): YES NO Observation of my child’s assessment by CATCH Team Members YES NO Videotaping of my child’s assessment for use by CATCH Team members YES NO Taking a photograph of/with your child YES NO Providing a final report to referring agency and behavioral health agency for inclusion in file Parent/Guardian Name: ______________________Child’s Name: ______________________ Address: _____________________________________Phone #: ___________________________ ______________________________________ Signature: _____________________________________ 66 Date: _________________ Equipo CATCH Revisión de Equipo por Autismo Infantil (Childhood Autism Team Check) Formulario de Consentimiento y Liberación de Responsabilidad Como parte del Programa Piloto del Equipo CATCH, se realizará una grabación de video de la evaluación de su hijo, para conservar la sesión de evaluación como registro para otros profesionales que puedan necesitar revisar la evaluación para realizar recomendaciones de los diversos sistemas de servicio. Como parte del Programa Piloto de Equipo CATCH, la observación de la evaluación de su hijo ayudará a desarrollar el plan de cuidado para su hijo al permitir al Equipo observar, comentar entre si y discutir las fortalezas, necesidades y apoyos necesarios. Además, se toma una fotografía de Ud. y de su familia al momento de la evaluación, la cual permanece en el registro de su hijo para el Equipo CATCH. Después de la sesión de retroalimentación, una copia del informe final será entregado a la agencia referida – ya sea Intervención Temprana de o el programa Preescolar Intermedio del Condado de Chester, y a la agencia de salud conductual. Los tres ítemes mencionados anteriormente serán usados estrictamente para el uso del Equipo CATCH para desarrollar un plan de cuidado para su hijo, y para mejorar el Programa Piloto de Equipo CATCH. La información y video no serán compartidos o copiados de manera alguna sin su consentimiento. En ocasiones, información respecto del Equipo CATCH es presentada en sesiones internas de educación, rondas de entrenamiento, y otros foros de entrenamiento clínico. Si se considera incluir la información de su hijo en estos entrenamientos, Ud. será contactado para autorizar la entrega de información. Los integrantes del Equipo CATCH que observarán pueden incluir personal de los siguientes: • Nacimiento a 3 años – Oficina de Intervanción Temprana / Retardo Mental del Condado de • Tres a 5 años – Unidad de Intervención Temprana / Intermedia del Condado de • Oficina de Salud Mental / Retardo Mental del Condado de • Oficina de Servicios Humanos del Condado de Chester • Cuidado Comunitario de Salud Conductual • Proveedores del Condado de • Pediatra del Desarrollo • Cuando el Equipo CATCH haya terminado de revisar el video, la cinta será guardada como parte del registro del Equipo CATCH del niño. Mediante la presente, apruebo las siguientes (por favor marque con un círculo): SI NO Observación de la evaluación de mi hijo por Integrantes del Equipo CATCH SI NO Grabar en video la evaluación de mi hijo para uso de integrantes del Equipo CATCH SI NO Tomar una fotografía de / con su hijo SI NO Entregar un informe final a la agencia que refiere y a la agencia de salud conductual para inclusión en archivo. Nombre de Apoderado / Tutor: _______________________________________ Nombre de Niño: __________________________________________________ Dirección Postal: __________________________ Teléfono: _________________ __________________________ Firma: ___________________________ Fecha: __________________ 67 How to get a follow-up appointment with Dr. Kruger at • Your child should see Dr. Kruger for follow-up in approximately 6-8 months* through the Regional Autism Center at The Children's Hospital of Philadelphia. • To get started, you will need to contact the Regional Autism Center's intake department at 215/590-7500 and complete a telephone intake. • Please let the intake worker know that you have seen Dr. Kruger through the CATCH team and need a follow-up visit in 6-8 months (from time of initial evaluation). • Please remind the intake worker to send out an intake packet and put your child on Dr. Kruger's reminder list for King of Prussia in the month the follow-up should occur. (For instance, if October is 6 months from evaluation, the reminder month would be October--there is no guarantee the appointment will be scheduled in the reminder month as it may be 1-2 months behind) • You will be mailed an intake packet (parent questionnaire and Child Behavior Checklists) that should be completed and returned with copies of IFSP/IEP and Dr. Kruger's report as soon as possible. • An appointment with Dr. Kruger at CHOP cannot be scheduled unless they have your intake packet and copies of report, education and behavioral plans, etc. returned. The sooner you return the information to CHOP, the sooner they can schedule an appointment. Appointments are only scheduled 3 months in advance and fill up very quickly. You are advised to begin this process soon after your CATCH Team evaluation. If you have any additional questions about this process, please contact the Program Manger of the Regional Autism Center at CHOP, Karla Varrell, at (215) 590-7649. You should also call Karla if you have not received an intake packet from CHOP within one week of your phone intake. *Please note, appointments may be scheduled anywhere from 5-8 months after initial evaluation depending on availability and scheduling. Date phone intake completed: ___________________ 68 Cómo obtener una cita de seguimiento con el Dr. Kruger en • Su hijo debe ver al Dr. Kruger para seguimiento en aproximadamente 6 – 8 meses* a traves del Centro Regional de Autismo en The Children's Hospital of Philadelphia. • Para comenzar, deberá contactar al departamento de ingresos del Centro Regional de Autismo al 215/590-7500 y completar un ingreso telefónico. • Por favor informe al encargado de ingreso que ha sido atendido por el Dr. Kruger vía el equipo CATCH y que necesita una cita de seguimiento dentro de 6 – 8 meses (desde el momento de evaluación inicial). • Por favor recuerde al encargado de ingreso de enviar un paquete de ingreso y poner a su hijo en la lista de recordatorio del Dr. Kruger para King of Prussia en el mes en que la cita de seguimiento debe ocurrir. (Por ejemplo, si octubre está a 6 meses de la evaluación, el mes de recordatorio sería octubre – no hay garantías que la cita será programada en lo que resta del mes, puesto que puede estar con un atraso de 1 o 2 meses) • Le enviarán por correo un paquete de ingreso (cuestionario de apoderado y Listas de Revisión de Comportamiento de Niño) que deberían ser completados y devueltos con copias de IFSP/IEP y el informe del Dr. Kruger lo más pronto posible. • Una cita con el Dr. Kruger en CHOP no puede ser programada a menos que los paquetes de ingreso y copias de informe, planes de educación y comportamiento, etc. sean devueltos. Mientras antes devuelva la información a CHOP, antes podrán programar una cita. Las citas son programadas con sólo 3 meses de adelanto y pueden llenarse con mucha rapidez. Se le sugiere que comience el proceso pronto después de su evaluación del Equipo CATCH. Si tiene cualquier pregunta adicional respecto de este proceso, por favor contacte a la Coordinadora de Programa del Centro Regional de Autismo en CHOP, Karla Varrell, al (215) 590-7649. También debería llamar a Karla si no ha recibido un paquete de ingreso de CHOP dentro de una semana de su ingreso telefónico. *Por favor tenga en cuenta, las citas pueden ser programadas entre 5 – 8 meses después de la evaluación inicial dependiendo de disponibilidad. Fecha en que se completó el ingreso telefónico: ___________________ 69 After the CATCH team …What’s Next? o Use the form titled “Application for Health Care Coverage”, and apply for Medical Assistance (MA), if you have not already done so. Please be sure to complete all sections, paying close attention to Section V. Special Qualifying Information and indicate your child has a disability as diagnosed by the developmental pediatrician. You can also apply at http://www.compass.state.pa.us (click on “enter compass site” and then click the box for “Apply online for social services” and click “continue” to apply for “health care coverage”) o Medical Assistance (MA) needs to be applied for within 60 days of the CATCH team report. After 60 days, the evaluation is not valid for applying for services. Be sure to include a signed copy of the report with your MA application. An extra copy of the report has been included for you. You should then copy the application and report in the event that it gets lost. We recommend delivering it in person to the County Assistance Office in , if possible. If not, an envelope has been provided for you to mail it in. If you drop it off in person, ask for a receipt to indicate that you filed the application. o Once Medical Assistance (MA) has been approved, an intake must be completed at a behavioral healthcare provider: o o o o o (insert providers from your county here) 70 o Once the intake has been completed by one of the providers listed above, you may be approved for behavioral health services (wraparound). You can choose to remain with that provider for wraparound services if they offer them, or you can choose another provider of wraparound services. Some providers of wraparound services in County include: o o o o o Schedule a 6-month follow up appointment with Dr. at insert location for follow-up Call . **See “How to obtain Follow-up appointment at ” Handout** o If you have additional questions or need assistance with this process, or additional resources please contact: , CATCH team Case Manager 000-000-0000 or email: . 71 Después del Equipo CATCH … ¿Qué Sigue? o Use el formulario denominado “Application for Health Care Coverage”, y solicite asistencia médica (MA), si no lo ha hecho ya. Por favor asegúrese de completar todas las secciones, prestando especial atención a la Sección V. Información Especial Para Calificar (Section V. Special Qualifying Information) e indique que su hijo tiene una discapacidad diagnosticada por el pediatra del desarrollo. También puede inscribirse en http://www.compass.state.pa.us (haga click en “enter compass site” y luego haga click en la casilla de “Solicitud en Línea para asistencia social”y luego haga click en “continuar” para solicitar “cobertura de cuidado de salud”) o Se debe solicitar Asistencia Medica (MA) dentro de los 60 días después de la entrega del informe del equipo CATCH. Después de 60 días, la evaluación ya no es válida para solicitar servicios. Asegúrese de incluir una copia firmada del informe junto con su solicitud de MA. Una copia adicional ha sido incluída para su uso. Debe, entonces, copiar la solicitud e informar en el caso que ésta se extravíe. Le recomendamos entregarla en persona a la oficina de Thorndale, de ser posible. Si no, se ha incluido un sobre para que la envíe por correo. Si la entrega en persona, solicite que le entreguen un recibo indicando que entregó la solicitud. o Una vez que la Asistencia Médica (MA) haya sido aprobada, un ingreso debe ser completado en uno de los siguientes proveedores de servicios completos: 72 o Una vez que el ingreso haya sido completado por uno de los proveedores de servicios completos, estará aprobado para servicios de salud conductual (completos). Puede elegir permanecer con ese proveedor de servicios completos, si los ofrece, o puede elegir otro proveedor de servicios completos. Algunos proveedores de servicios completos en el Condado de Chester incluyen: o Programe una cita de seguimiento en 6 meses con el practicante Dr. Kruger / enfermera en CHOP vía el Centro Regional de Autismo. Llame al 215-590-7500. **Lea el informativo “Cómo obtener una cita de seguimiento en CHOP” o Si tiene preguntas adicionales o necesita asistencia en este proceso, por favor contáctese con: Angela Conser, Coordinadora de Caso de equipo CATCH 484-237-5140 or email: angelaco@cciu.org. 73 Family Resources English and Spanish Chester County, Pennsylvania has a large Hispanic population. In researching the types of resources available to Spanish speaking families, we found that many of the resources were only available online and on websites that are written in English. We wanted to work to make a variety of resources on autism, readily available to families of children newly diagnosed with autism. Acquiring services for a child with autism can be confusing to any parent. We found that parents of children with autism who were Spanish speaking, were frequently frustrated about understanding the disorder and the support systems that their children needed to be involved with (like early intervention and BHRS). We hope that the published resources we have collected as well as our own resources that have been translated, will aide in a smoother transition into services for Spanish speaking families of children with autism. 74 Autism Library – Spanish Language In order to better serve Hispanic families in the county, we have established a lending library of books on autism in Spanish. We plan to use these resources to loan to families who have children evaluated by the CATCH team. This library program was established to help eliminate lack of economic resources or English language skills from interfering with a family’s ability to understand and respond to their child’s needs. The following is a list of the titles we currently have available for families in our Autism Library for Spanish Speaking Families: 1. Autismo Un Guia Para Padres by Simon Baron-Cohen and Patrick Bolton (1999) This 150 page guide book for parents is written by the Director of Autism Research at Cambridge University. The guide covers common questions about autism (what are the symptoms, causes, and typical treatments?) It also includes a chapter on adolescence and adulthood. 2. Autism y Sindrome de Asperger: Guia para familiars, amigos y profesionales By Jose Ramon Alonso Pena Autism and Asperger’s Syndrome: Guide for Families, Friends and Profesionals .This book covers topics from basic information to diagnosis, Apserger’s syndrome, neurology and autism, treatment, education and effect of autism on the family. The book is 271 pages long, with over 50 pages devoted to describing a wide variety of educational and other treatments. 3. Convivir con el Autismo: Una orientacion para padres y educadores by Mike Stanton (2002) Learning to Live with High Functioning Autism is written by a professional educator and father of a child diagnosed with autism. The chapters are as follows: “1. Introduction. 2. A parent's tale. 3. Understanding autism. 4. Diagnosis. 5. Conflict and partnership. 6. Brothers and sisters. 7. Early years. 8. Childhood. 9. Adolescence. 10. Adult life. 11. Myths and insights. 12. Challenging behavior. 13. Mind your language. 14. Difficulties at school. 15. The way forward. 16. Conclusion” 4. Los Trastornos del Espectro de Autismo de la A a la Z by Emily Doyle and Barbara T. Doyle (2005) Autism Spectrum Disorders from A to Z: Assessment, Diagnosis and More written by two educational consultants from California. The Spanish translation of this book was named the 2006 Literary Work of the Year by the autism Society of America. The ASA praises “Autismo A-Z is the most comprehensive book on autism available anywhere in Spanish.” If you do not speak Spanish, We recommend purchasing the book in English and in Spanish to help you know which sections of the book may be most helpful to the clients you serve. 75 Medical assistance in PA Take a screening test to see if eligible, apply on line, check benefits https://www.humanservices.state.pa.us/compass/PGM/ASP/SC001.asp Early intervention • First Signs http://www.firstsigns.org • Checklist for growing children http://www.dpw.state.pa.us/Child/EarlyIntervention/003670018.htm Our organization aims to educate parents, healthcare providers, early childhood educators, and other professionals in order to ensure the best developmental outcome for every child. Our goals are to improve screening and referral practices and to lower the age at which young children are identified with autism and other developmental disorders. The First Signs Web site provides a wealth of vital resources, covering a range of issues: from healthy development, to concerns about a child; from the screening and referral process, to treatments for autism spectrum disorders. Find out what developmental milestones are appropriate for your child between the ages of 1 month -3 years • Planning for the IFSP http://www.dpw.state.pa.us/Child/EarlyIntervention/003670020.htm A family’s introduction to Early Intervention program planning • Early intervention contact numbers http://www.dpw.state.pa.us/Child/EarlyIntervention/003670016.htm Contact numbers to inquire about an intake/assessment with early intervention. This list is broken down by County. • A Family's Introduction to Early Intervention in Pennsylvania http://www.pattan.k12.pa.us/regsforms/Resources2.aspx This booklet explains how to request early intervention services; eligibility criteria; rights and responsibilities; individualized family service planning for ages birth to three; and individualized education planning for ages three to school age 76 Early Intervention Transitions • Transitions for you and your child http://www.dpw.state.pa.us/Child/EarlyIntervention/003670022.htm Transitions occur in our lives all the time in many different ways. Changes in our jobs or homes are examples. While receiving early intervention services, you and your child may experience transitions as well. This site discusses how you can plan for and manage transitions. • Early Intervention transition http://www.pattan.k12.pa.us/teachlead/EarlyInterventionTransition.aspx Information contained here relates to both the transition from the infant/toddler programs to Preschool programs and the transition from Preschool programs to the school age district programs. School Age to Adult Transition • Living beyond high school http://www.autismsociety.org/site/PageServer?pagename=livinghighschool Discusses the importance of transition planning and need to consider when a child is nearing graduation from high school • Transition from Special Education to adult life http://www.transitionmap.org/ • Transition Health Care Checklist http://www.dsf.health.state.pa.us/health/cwp/view.asp?q=243876 A Roadmap from school to the future for students ages 14 to 21 with developmental delay residing in Pennsylvania and receiving special education services. The Pennsylvania Department of Health Southwest Regional staff and their community partners recognized a gap in health services for youth with special health care needs. When these youth leave school, they transition from having different or no insurance coverage, from seeing pediatric specialists to searching for adult medical specialists, and from good coverage for medications to having to understand new systems for obtaining medicines. • Secondary Transitions http://www.pattan.k12.pa.us/teachlead/SecondaryTransition.aspx Secondary transition is the process of preparing students for life after they leave high school, including participation in post-secondary education or training, employment, and community living. 77 Adult Issues • Planning for the future http://www.autismsociety.org/site/PageServer?pagename=livingplanning • Autism Living and Working http://www.autismlivingworking.org/ ALAW is demonstrating, through the Autism Pilot Program developed jointly with the Pennsylvania Department of Public Welfare's Office of Social Programs, that adults with Autism/Pervasive Developmental Disorder can be accommodated in order to live as valued neighbors, workers and full citizens of our Commonwealth. Safety • Safety in the home http://www.autismsociety.org/site/PageServer?pagename=livingsafety Resources and ideas for assuring the home is a safe environment for the child and family • Safety ID cards to print http://www.leanonus.org/pages/11/index.htm • Police and Autism- http://policeandautism.cjb.net/avoiding.html ID cards to print and put relevant information that would assist first responders and police should there ever be an emergent situation requiring law enforcement Information on how parent and law enforcement can work together to provide a quick response in the event that a child elopes or runs from the caregivers • Medic Alert http://www.medicalert.org/Home/HomeEmblemCatalogs.aspx MedicAlert provides comprehensive Kid Smart services that can safeguard and identify your child in an emergency. With a single phone call, emergency response personnel can access medical history and records, protecting your child against potentially adverse treatments or medication conflicts. • Child Locator -GPS Watches for kids http://childlocator.com/ • Safety Harnesses http://www.the-baby-boutique.com/tottether.html baby-boutique.com/harnessbuddy.html Child friendly watches that serve as a GPS system http://www.the- Harnesses that help protect your child from danger by allowing close access of your child, but still allows for exploration. IonKids http://www.ion-kids.com/ The ionKids system allows you to monitor up to four tagged objects at once. Children, seniors, pets or anything you might lose and want to keep safe. The system consists of a base unit, a handheld device that allows parents to monitor up to four tags simultaneously and a Wristag. Tag holders can be purchased separately and can be clipped onto belt loops or lanyards; Wristags can be locked on children’s wrists. ionKids lets you set a variable zone around the base unit so you will know when your child wanders to far. If you can't find them, use the locating device and let it show you where to go to find them. 78 For medical professionals • American Academy of Pediatrics http://www.aap.org/healthtopics/autism.cfm • First Signs http://www.firstsigns.org • AAP-The Pediatrician's Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children http://aappolicy.aappublications.org/cgi/content/full/pediatrics;107/5/e85 • Centers for Disease Control -Autism Information http://www.cdc.gov/ncbddd/autism/ • Autism toolkit for Physicians http://www.northshorelij.com/body.cfm?id=4726&oTopID=4725&PLinkID=2849 Our organization aims to educate parents, healthcare providers, early childhood educators, and other professionals in order to ensure the best developmental outcome for every child. Our goals are to improve screening and referral practices and to lower the age at which young children are identified with autism and other developmental disorders.The First Signs Web site provides a wealth of vital resources, covering a range of issues: from healthy development, to concerns about a child; from the screening and referral process, to treatments for autism spectrum disorders. Helpful informational topics for health care practitioners including special considerations for seeing patients with autism, screening tools, research, and more. • National Institute of Mental Health http://www.nimh.nih.gov/healthinformation/autismmenu.cfm Information on Autism from the National Institute of Mental Health For teachers/educators • Autism Education Network http://www.autismeducation.net The Autism Education Network's mission is to improve public special education programs and to influence public policy that affects individuals with autism. We use new technology and the Internet to connect and empower people in order to affect change. We provide free information about special education rights and programs and our outreach efforts include seminars about special education law and conferences regarding best practices in autism treatment and methodologies • PaTTAN http://www.pattan.k12.pa.us/teachlead/Autism.aspx Offers information regarding current PA standards, teaching practices, effective assessments and instruction. Training and workshop information for educators, as well as publications relevant to Autism Spectrum Disorders are highlighted. Can also find publications such as Introduction to Early Interventions, Providers guide to Early Intervention 79 • PDE Special Education http://www.pde.state.pa.us/special_edu/site/default.asp?g=0&special_eduNav=|978|&k12 Nav=|1141| Mission, role, and function of special education in PA schools are defined and addressed. Links to other reference materials on standard practices and procedures. • Adapted Books http://schools.nycenet.edu/D75/academics/literacy/adaptedbooks/catalog.htm Provides PECS and other visual materials to adapt books for children. Requires Adobe Acrobat reader and/or Boardmaker • IDEA Regulations a. http://www.wrightslaw.com/idea/art.htm b. http://www.pde.state.pa.us/special_edu/cwp/view.asp?Q=111436&A=177 • Wrightslaw http://www.wrightslaw.com/ Different Roads to Learning http://www.difflearn.com/ Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law and advocacy for children with disabilities. Wrightslaw includes thousands of articles, cases, and free resources on dozens of special education topics. For 10 years, Different Roads to Learning has been striving to meet the needs of families and professionals working with children diagnosed with autism spectrum disorders. Our product line contains over 250 products, including books, flashcards, and videos, along with other materials critical to Applied Behavior Analysis and Verbal Behavior programs. We have always sought out products that meet the unique learning style and educational needs of the children in our community. • HandRighting, Ink. http://www.handrightingink.com/index.html We specialize in teaching handwriting to children and adults of all ages. We provide seminars for teachers and parents, and are happy to provide school-based intervention. Please see the linked pages for more information, and do not hesitate to contact us if we can provide any further information. Support Systems/Resources • Grandparents • http://www.udel.edu/bkirby/asperger/grandparents.html Answers common questions grandparents of children who have autism may have. The OASIS (online aspergers syndrome information and support) • Religion and Autism • http://www.autism-society.org/site/PageServer?pagename=Religion_and_Autism Provides both a Christian and Jewish perspective on children with ASD and how the church can provide an inclusive environment • http://gbgm-umc.org/disc/autism.stm Information on autism for religious educators 80 • Autism Information www.autismlink.com • Accessible PA www.accessiblepa.state.pa.us • Children’s Education and Resource Center http://www.frs-inc.com/ • Family Village www.familyvillage.wisc.edu • ARC of Chester County http://www.arcofchestercounty.org/ • Access Services http://www.accessservices.org/index.php • Autism Spectrum Resource Center http://www.autismsrc.org • Child and Family Focus • Parents involved Network www.pinofpa.org • National Alliance for the Mentally Ill http://namipa.nami.org • Pa Training and Technical Assistance Network • Special Kids Network Welcome to the Family Village! We are a global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support. Since 1952, The Arc of Chester County has been there, helping to meet challenges and empowering individuals to reach toward their full potential; successfully weaving their everyday experiences into the rich fabric of Chester County. Our mission is to empower and serve persons with cognitive, emotional and behavioral disabilities through innovative services which enable them to live rich and fulfilling lives with positive family and community relationships. Our mission is to provide therapeutic services and educational resources to individuals within the autism spectrum and their families. We recognize the special challenges that they confront in everyday living and respect their unique approach to life. Our goal is to provide an environment where they will find a sense of belonging with like-minded individuals. We seek to promote a positive self-image that reflects their strengths, potential for growth, and unique contribution to our world. http://www.childandfamilyfocus.org/ It is the mission of Child and Family Focus to provide a continuum of mental health services that will enhance the quality of physical, emotional, intellectual, spiritual, and relational well being of youth and their families. Through our commitment to excellence, we endeavor to provide and advocate for least-restrictive, family- and community-based settings as the most conducive for effective growth and positive change. CFF Autism Family Based Services offer a unique approach to helping the child and the family of the child, who has been diagnosed with a developmental disability within the Autism Spectrum Disorder (ASD). Parents Involved Network of Pennsylvania (PIN) is an organization that assists parents or caregivers of children and adolescents with emotional and behavioral disorders. PIN provides information, helps parents find services and will advocate on their behalf with any of the public systems that serve children. These include the mental health system, education, and other state and local child-serving agencies. NAMI PA offers the Family to Family Education course for members who have adult children and an educational program specific to the needs of families of children and adolescents. The NAMI-CAN, for young families, and NAMI-CARE, for consumers, models of support are also available. www.pattan.k12.pa.us http://www.dsf.health.state.pa.us/health/cwp/browse.asp?A=179&BMDRN=2000&BCOB=0&C=35825 It is information and referral to services that children with special health care needs and their families may need. It is available Monday through Friday from 8:00 a.m. to 8:00 p.m. and Saturdays 8:00 a.m. to 6:00 p.m. 81 • Parent to Parent of Pennsylvania http://www.parenttoparent.org/ Local support groups o ASCEND – West Chester - third Wednesday each month. Grove United Methodist Church, West Chester. Networking and Support. Info: Barbara at 610-701-0466, Barb.Sullivan@comcast.net Parent to Parent of Pennsylvania matches parents and family members of children and adults with disabillities or special needs, on a one-on-one basis, according to condition or concerns. o ASCEND – West Grove - 3rd Tues of every other month. 11/21- 7pm at Avon Grove Charter School Info: Jane 610-345-1156, JaneLeeT@aol.com o ASCEND – Delaware County - 10/10, 7:30pm - HANDLING BULLIES 101 with Brad Norford, PhD. at Grace Chapel, Darby and Eagle Roads, Havertown Info: Deirdre 610-449-6776, or dcwright@ascendgroup.org or www.ascendgroup.org o Autism Alliance Meeting - Monthly at the CCIU, Boot Road, Downingtown. Call for date/time: Brenda Eaton, Autism Network Coordinator, brendae@cciu.org 484237-5354 Advocacy • Pennsylvania Department of Education Consult Line www.pde.state.pa.us/special_edu/cwp/view.asp?a=177&Q=61680 The ConsultLine is designed to assist parents and advocates of children with disabilities or children thought to be disabled. If you have any questions concerning your child's special education program or the laws relating to the provision of services in your child's IEP (Individualized Educational Program), the special education specialists at ConsultLine may be able to assist you. • Parent Education network (PEN) http://www.parentednet.org/ • Education Law Center http://www.elc-pa.org • Pennsylvania Health Law Project (HLP) PEN is Pennsylvania's statewide Parent Training and Information Center. Much of the information included in this site is designed to support Pennsylvania parents of children with special needs, but information and links are included on Federal Special Education, National Disability Issues and Resources, Special Education Legal Links, Transportation, and Travel that will also pertain to parents and individuals with disabilities in other states. The Education Law Center (ELC), a non-profit legal advocacy and educational organization, dedicated to ensuring that all of Pennsylvania's children have access to a quality public education. http://www.phlp.org HLP provides free legal services and advocacy to Pennsylvanians having trouble accessing publicly funded health care coverage or services. 82 Sibling issues • Autism Society article on sibling issues http://www.autismsociety.org/site/PageServer?pagename=livingsiblings Discusses some strategies on addressing the needs of the siblings of children who have autism. • Sibling groups • Second Sat/month. 8:45-10am for 4-6 yr olds and 10-12pm for 7-11 year olds. Cost $35 Wayne at 987 Old Eagle School Rd., Suite 712, Wayne, PA 19087. Facilitators: Dale Fisher, LCSW , Deirdre Miller, MA. Info: 610-668-8890, dalefish2000@aol.com • Sibshops http://www.thearc.org/siblingsupport/sibshops-about# Support groups for siblings of children with have special needs. Provides a listing by state of available groups. Website also has a listserv for siblings as well as a pen-pal program o SIBSHOPS, for 8-to-13-year-old brothers and sisters of children with emotional/behavioral disorders. Mixture of new games, discussion and guest speakers. Info/Regis. 610-9173010 x223, rkbrenneman@zoominternet.net o SIBSHOPS - Pottstown. 2nd Sat of month (Sept thru May) Info: Jaime, Creative Health Services, 610-326-2767, jtyson@creativehs.org Newly diagnosed • Familial Stress http://www.autism-society.org/site/PageServer?pagename=livingfamily This article from the Autism Society of America discusses and outlines the unique stressors experienced by families who have recently received a diagnosis of autism for one if their children. Communication Resources • Do 2 Learn http://www.dotolearn.com/ • Picture Exchange Communication System (PECS) http://www.pecs.com/ A web site providing activities to promote independence in children and adults with special learning needs. Free teacher and parent materials. Lori Frost and Andy Bondy pioneered the development of The Picture Exchange Communication System (PECS) beginning in 1985 within the state of Delaware. It is a unique augmentative/ alternative training package that allows children and adults with autism and other communication deficits to initiate and develop functional communication. • Boardmaker-Mayer-Johnson http://www.mayer-johnson.com 83 Our mission is to enhance learning and human expression for individuals with special needs through symbolbased products, training and services. To facilitate the creation of symbol-based communication and educational tools, Mayer-Johnson offers a family of powerful, yet easy-to-use Boardmaker software products each designed for specific needs: Boardmaker is symbol-based desktop publishing software used for the creation of printed materials. • Assistive Communication Links http://prekese.dadeschools.net/PRIMETime/PTlinks.htm • Adapted Books http://schools.nycenet.edu/D75/academics/literacy/adaptedbooks/catalog.htm Complete catalog of books with pictures files in order to adapt and make them more interactive. Uses boardmaker and Adobe PDF Spanish INFORMACION GENERAL SOBRE EL AUTISMO society.org/site/PageServer?pagename=autismo http://www.autism- Kids • Just for Kids- Autism Fact Sheet http://www.njcosac.org/cosacautism Article explaining autism to kids in simple language with pictures National Organizations • Autism Speaks http://www.autismspeaks.org • Autism Society of America http://www.autism-society.org • Cure Autism Now • Autism National Committee www.autcom.org Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle ASA is dedicated to increasing public awareness about autism and the day-to-day issues faced by individuals with autism, their families and the professionals with whom they interact. The Society and its chapters share a common mission of providing information and education, and supporting research and advocating for programs and services for the autism community. http://www.cureautismnow.org Cure Autism Now (CAN) is an organization of parents, clinicians and leading scientists committed to accelerating the pace of biomedical research in autism through raising money for research projects, education and outreach. This is the only autism advocacy organization dedicated to "Social Justice for All Citizens with Autism" through a shared vision and a commitment to positive approaches. Our organization was founded in 1990 to protect and advance the human rights and civil rights of all persons with autism, Pervasive Developmental Disorder, and related differences of communication and behavior. 84 • Center for Excellence in Autism Research (CeFAR) http://www.wpic.pitt.edu/research/CeFAR/default.htm The Pittsburgh-based Center of Excellence, under the direction of Nancy J. Minshew, MD, an internationally recognized expert in autism, is among the top three CPEA’s in the country. Dr. Minshew is working with a team of scientists from Carnegie Mellon University as well as the University of Illinois at Chicago, to search for the genetic, cognitive, and neurological basis for autism. • Centers for Disease Control -Autism Information http://www.cdc.gov/ncbddd/autism/ • OASIS www.aspergersyndrome.org As parents of children who are diagnosed with AS, we understand how essential is it that families of children diagnosed with Asperger Syndrome and related disorders, educators who teach children with AS, professionals working with individuals diagnosed with AS, and individuals with AS who are seeking support, have access to information. Behavioral Health • Child Guidance Resource Center http://www.cgrc.org/child_bhrs.html • Holcomb Behavioral Health Service • Chester County Intermediate Unit • Creative Health Services http://cstmont.com/creative_health.htm • Community Services of Devereux http://www.devereux.org/site/PageServer?pagename=ben_csd Multiple locations that provide a full range of therapy and support services http://www.cciu.org/Departments/StudentServices/Assessment/homecommunityservices.html/view?searcht erm=home%20and%20community%20services Home and Community Services serves children diagnosed with mental/behavioral health disorders and allows them to remain in the least restrictive setting possible. Creative Health Services are a Core provider for Chester County BHRS system. Families can have initial behavioral health assessments and intakes done at this location. Community Services of Devereux (CSD) is dedicated to providing high quality, therapeutically intensive, coordinated and community based services to children, adolescents and adults. CSD's continuum is designed to serve the needs of the Philadelphia and Chester County community as well as to be integrated into and complement the over-all range of care and level of services provided by all Devereux Centers providing services to Philadelphia and Chester County residents. As a result, collaborative partnerships between CSD staff, community resources, referral sources and payors are inherent in all services provided. Services are also monitored and evaluated by oversight agencies and funding sources, and through internal on-going and planned performance improvement activities. CSD conducts client, teacher and employee satisfaction surveys proactively and monitors client outcomes through a variety of mechanisms, including the Devereux Scales of Mental Disorders. • Institute for Behavioral Change http://www.ibc-pa.org/ We deliver in-home and/or in-school behavior support to address troublesome behavior of all sorts in children of all ages who receive Medical Assistance benefits and need these services, at absolutely no cost whatsoever regardless of family income. • Integrated Behavior Solutions http://www.integratedbehaviorsolutions.net Integrated Behavior Solutions strives to provide targeted rehabilitation services to persons from 2 to 30 years of age with behavior deficits and/or developmental delays. Utilizing the skills and styles of of vast network of professionals, we seek to provide and apply holistic approaches to resolve problems across the behavioral health spectrum. 85 Interventions Applied Behavior Analysis o Discrete Trial Therapy http://kathyandcalvin.com/manuals/aba_train.htm Good overview of DTT with examples o Lovaas Therapy www.lovass.com o Verbal Behavior http://www.autismusaba.de/lovaasvsvb.html Discusses the differences between Lovaas and Verbal Behavior. While the Lovaas-based approach uses ABA to teach language skills based on the premise that receptive language should be developed prior to expressive language… The Verbal Behavior approach focuses on teaching specific components of expressive language (mands, tacts, intraverbals, among others) first. o Fluency Training http://www.autismteachingtools.com/page/bbbbfg/bbbbfz A brief overview of fluency concepts is provided here for informational purposes, as well as some fluency charts and examples of how we use them. As with all interventions, we suggest you refer to the original source material before choosing how to apply these teaching technologies with your learners. o Precision Teaching http://psych.athabascau.ca/html/387/OpenModules/Lindsley/introa1.shtml • o A brief overview of fluency concepts is provided here for informational purposes, as well as some fluency charts and examples of how we use them. As with all interventions, we suggest you refer to the original source material before choosing how to apply these teaching technologies with your learners. Incidental teaching http://www.spiesforparents.cpd.usu.edu/Modules/Module%203%20%20Incidental%20Teaching/Introduction.htm Basic overview and explanation of incidental teaching and provides examples. o Positive behavior supports o DIR – Floortime: http://www.floortime.org/faqs.php?faqid=3 The DIR (Developmental, Individual-Difference, Relationship-Based)/Floortime approach provides a comprehensive framework for understanding and treating children challenged by autism spectrum and related disorders. It focuses on helping children master the building blocks of relating, communicating and thinking, rather than on symptoms alone. o TEACCH- http://www.teacch.com/ • Social Stories- http://www.thegraycenter.org/socialstories.cfm o A Social Story™ describes a situation, skill, or concept in terms of relevant social cues, perspectives, and common responses in a specifically defined style and format. The goal of a Social Story™ is to share accurate social information in a patient and reassuring manner that is 86 easily understood by its audience. Half of all Social Stories™ developed should affirm something that an individual does well. Although the goal of a Story™ should never be to change the individual’s behavior, that individual’s improved understanding of events and expectations may lead to more effective responses • Picture Exchange Communication System (PECS) - http://www.pecs.com/ • American Sign Language (ASL)- http://www.lifeprint.com/asl101/ • Sensory Integration Therapies- http://216.194.201.208/terrytown/sensoryintegration.org/ o The Picture Exchange Communication System (PECS) is an augmentative communication system developed to help individuals quickly acquire a functional means of communication. PECS is appropriate for individuals who do not use speech or who may speak with limited effectiveness: those who have articulation or motor planning difficulties, limited communicative partners, lack of initiative in communication, etc. Other treatment approaches: o Gluten/Casien free diet http://www.gfcfdiet.com o Complimentary approaches http://www.autism- society.org/site/PageServer?pagename=ComplementaryApproaches Discusses art, music, animal therapies o Biomedical and dietary approaches http://www.autismsociety.org/site/PageServer?pagename=BiomedicalDietaryApproaches Dentists • Dr. Sheldon Bernick http://www.childrens-dentistry.com/index_files/Page865.htm General Pediatrics • Dr. Brad Dyer Allstar Pediatrics 400 North Gordon Dr, Suite 702 Lionville, PA 19341 610-363-1330 • Reading Pediatrics http://www.readingpediatrics.com/ All children with special health care needs (such as Down Syndrome, autism, cystic fibrosis) are encouraged to participate in Reading Pediatrics’ Star program. Children enrolled in the Star Program will have an updated list of medications, allergies, and specialty care they receive kept in the computer and on their chart, ensuring their specific medical information will be known even in cases of an emergency visit, when their paper chart may not be immediately available. 87 Developmental Pediatricians • CHOP- Child Development Center http://www.chop.edu/consumer/jsp/division/service.jsp?id=26666 34th St. and Civic Center Blvd. Philadelphia, PA 19104 215-590-7500 • Dr James Coplan www.ndepeds.com 919 Conestoga Rd. Building 1, Suite 100 Rosemont, PA 19010 610-520-2130 • Dr. Thomas Casey 937 E. Haverford Rd. Suite 103 Bryn Mawr, PA 19010 610-527-0147 • Dr. Beth Parrish and Dr. Maureen Fee http://www.stchristophershospital.com/CWSContent/stchristophershospital/ourServices/medicalServices/de ptpeds.htm#developmental St. Christopher’s Hospital E. Erie Ave. and N. Front St. Philadelphia, PA 19134 215-427-5531 • Shyamali Godboli, MD Crozer Keystone Health Network 1 Medical Center Blvd # 326 Chester, Pennsylvania 19013 610-876-6898 • Dr. Scott Meyer and Dr. Thomas Challman http://www1.geisinger.org/patients/findadoc/docsearchresults.cfm Geisinger Medical Center-Pediatric Subspecialties 100 N. Academy Ave. Danville, PA 17822 570-271-6440 Developmental Optometry • Dr. Chaya Herzberg http://www.optometrists.org/herzberg/index.html • Dr. Mitchell Scheimann http://www.visiontherapy-online.com/index.html Visual Rehabilitation for Special Populations, including Patients with Traumatic Brain Injuries, Stroke, Whiplash, Developmental Delays, Cerebral Palsy, Multiple Sclerosis, etc. 88 Speech Therapy • CHOP-Center for Childhood Communications http://www.chop.edu/consumer/jsp/division/generic.jsp?id=77649 The Department of Speech-Language Pathology evaluates and treats children from birth to 21 years who have difficulties with communication and swallowing. Services are provided across the continuum of care from CHOP’s intensive care units, acute care units, rehabilitation programs, multiple specialty clinics, and outpatient programs. Speech-language pathologists also teach families and professionals to work with children with various communication and swallowing difficulties and participate in research to advance the field of speech-language pathology. • Jody Seligson-Totally Sense-Sational http://www.totalysensesational.com/id17.html • A Total Approach http://www.atotalapproach.com/default.asp • Bryn Mawr Child Study Institute http://www.brynmawr.edu/csi/ • Theraplay http://www.theraplayinc.com/ • Fitz-All http://www.fitz-all.com/services/speech_therapy/index.html The Therapists from Communication Imaging are dedicated to providing individualized communication strategies and treatment plans for children of all ages. By emphasizing upon each child's strengths, treatment techniques and goals will focus on facilitating communication and maximizing each individual's potential. Our Speech Therapists will use such treatment techniques as PECS, oral motor exercises, sign-langage, Floortime/DIR, etc. to help increase communication skills while in a therapeutic naturalistic setting. A trained masters level therapy program that works on specifically speech and communication through a variety of methods, including oral-motor, speech, articulation, assistive technology, as well as work on social and peer relationships. The Child Study Institute of Bryn Mawr College provides a multidisciplinary approach to academic and interpersonal difficulties experienced by children, adolescents, adults and families. Highly qualified specialists in psychological assessment, educational support services, speech-language therapy, and psychotherapy work together as a team, collaborate closely with parents, and consult with teachers to help foster adjustment and competence in school, at home and in the community. Speech and Language therapy helps people to develop specific communication skills and/or to compensate for weaknesses in a specific area of ability. Speech/Language Pathologists serve all age ranges and a variety of disorders: speech, language, hearing, voice, fluency and swallowing. Occupational Therapy • A Total Approach http://www.atotalapproach.com/default.asp • Jody Seligson-Totally Sense-Sational http://www.totalysensesational.com/id1.html In order for the child to develop higher order thinking and learning performance, the child has to develop certain neuro-developmental pathways. Sensory Integration is mostly a "bottom up" approach, where we attempt to assist the child in developing more efficient coping strategies inside his / her nervous system, while also working at changing nervous system circuitry to develop a more functional adaptive response to the environment in the child. 89 • Fitz-All http://www.fitz-all.com/services/occupational_therapy/index.html • Collage http://www.collage-otp.org/ The occupational therapists at Fitz-All are very experienced in working with children with mild to moderate developmental delays, learning differences/disabilities, sensory processing disorders and children on the Autistic Spectrum. OTP serves individuals with social skills deficits that intrude in day to day interactions in work, school, family and leisure by providing regularly scheduled, social-skill-enhancing group activities supplemented with therapeutic individual and group interventions and educational outreach. Social Skills Groups • Prompt and Play http://www.promptandplay.com/ • Autism Spectrum Resource Center http://www.autismsrc.org/ • Bryn Mawr Child Study Institute http://www.brynmawr.edu/csi/ • Center for Psychological Services http://www.centerpsych.com/ • Fitz-All http://www.fitz- Prompt & Play is a center designed for children ages 3 through 18 who are in need of social skills, life skills, or individual counseling. The various groups at this center are designed to promote social and developmental growth within children. Our mission is to provide therapeutic services and educational resources to individuals within the autism spectrum and their families. We recognize the special challenges that they confront in everyday living and respect their unique approach to life. Our goal is to provide an environment where they will find a sense of belonging with like-minded individuals. We seek to promote a positive self-image that reflects their strengths, potential for growth, and unique contribution to our world. The Child Study Institute of Bryn Mawr College provides a multidisciplinary approach to academic and interpersonal difficulties experienced by children, adolescents, adults and families. Highly qualified specialists in psychological assessment, educational support services, speech-language therapy, and psychotherapy work together as a team, collaborate closely with parents, and consult with teachers to help foster adjustment and competence in school, at home and in the community. The Center for Psychological Services proudly offers a range of art therapy groups designed to help children, teenagers and young adults develop social skills and awareness. Existing strengths are reinforced and new skills are taught to build self-esteem in a relaxed and fun environment. No art talent is necessary to obtain maximum benefit from this program! all.com/services/therapeutic_support/social_thinking/index.html At Fitz-All, we have developed a range of groups for children pre-school through middle school who have a need to develop and/or improve social interaction skills. Our small groups provide children the opportunity to integrate their skills in a small, more typical play group. All children are screened to determine their particular area of need and the best group and approach for them. Several approaches are used including the cognitive approach based on the I LAUGH model, by Michelle Garcia Winner, to facilitate communication skills for the development of social interactions. • Collage http://www.collage-otp.org/ • Main Line Clinical Associates http://www.mainlineclinical.com/index.html • Theraplay http://www.theraplayinc.com/ OTP serves individuals with social skills deficits that intrude in day to day interactions in work, school, family and leisure by providing regularly scheduled, social-skill-enhancing group activities supplemented with therapeutic individual and group interventions and educational outreach. 90 • Wanna Play http://www.wannaplayprogram.com/ Wanna Play offers small social groups aimed at children of all ages and abilities, to help develop their interactive social skills, using fun games and activities in both group and one-on-one settings. Miscellaneous • Riverside Professional Development http://www.riversidepd.com/ • Cognitive Learning Systems • Traci DiFrancesco, M.Ed ABA Consultant TraciDiFran@comcast.net • Residential Living Options http://www.residentiallivingoptions.org/ • The Second Mile http://www.thesecondmile.org/welcome.php Riverside Professional Development, LLC improves the performance of your professionals through interactive, classroom style training and one-on-one consultations. Riverside facilitators have over 200 years combined experience. Our history of success with clients in private sector, academic, and human service organizations along with State and City Government provide us a unique ability to assess your specific needs and create customized training. We provide a monthly schedule of open registration events at our training facility, The Riverside Center, while providing tailored workshops, either in-house or onlocation, for our contracting clients. Created in 1989 by G. David Smith, Ph.D., B.C.B.A. and incorporated in 2005 under majority owner, Erin E. Smith, Riverside Professional Development is a woman owned and operated business headquartered in Harrisburg, PA. http://www.coglearn.com/Default.aspx Headquartered in Harrisburg, Pennsylvania, CLS is committed to the mission of developing and marketing research-based student and teacher educational programs and content designed to facilitate comprehension and enjoyment of learning. Cognitive Learning Systems believes this mission can be best achieved by integrating proven, research-based learning methods with curriculum and training. For 14 years, I have worked with children and adolescents with autism. I have been trained in ABA and consult in homes and schools. I use functional behavior assessments. Once strengths and needs are recognized, goals will be set. Some of the goals that will be addressed will be: activities of daily living, academic, communication, social skills, community skills, fine and gross motor skills, play skills and compliance issues. Data will be recorded daily, summarized and graphed. Interventions will be clear and consistent. Modifications to the child's program will be adjusted according to the data collected. The skills mastered will be generalized to different people, items, and environments. My goal is to teach children with developmental disabilities to function and learn according to their true potential. RLO is a non-profit organization that assists people with disabilities and their families with their individual housing needs. Throughout the southeastern region of Pennsylvania, there are hundreds of people with disabilities interested in developing housing of their choice. There is, however, limited funding to support them in realizing their dreams. RLO is committed to doing something about it! The Second Mile is a nonprofit organization serving the youth of Pennsylvania. At The Second Mile, we are committed to helping young people achieve their potential as individuals and as community members and providing education and support for their parents and youth service professionals. Summer Programs/Camps • Aaron’s Acres http://www.udservices.org/aaronsAcres.asp Aaron's Acres was founded as a day camp in 1998 by a group of parents who had children with special needs. The purpose of Aaron's Acres is to provide ongoing supportive, educational and recreational services to children with special needs and their families. 91 • A Total Approach http://www.atotalapproach.com/default.asp 5 to 6-week camps are offered every summer to children with developmental delays, including spectrum disorders, and consists of heavy amounts of sensory integration work, DIR/Floortime, as well as educational activities. • Camp Joy www.campjoy.com • Camp LeMar www.leemar.com • Keystone Pocono Camp www.campkey.com • Summit Camp and Travel www.summitcamp.com • Camp Jaycee http://www.campjaycee.org We're a special needs camp for kids and adults with developmental disabilities: mental retardation, autism, brain injury, and neurological disorders. Camp Lee Mar is a private residential special needs camp for children and young adults with mild to moderate learning and developmental challenges, including but not limited to the following: mental retardation, developmental disabilities, down syndrome, autism, learning disabilities, Williams Syndrome, Asperger Syndrome, ADD, Prader Willi, and ADHD. Committed to offering novel as well as proven and meaningful programming to individuals with various disabilities, ranging from developmental delays, ADHD, autism, and other related impairments. Ensuring the proper degree of structure, supervision, and most importantly fun. Camping for boys and girls with attention, social, or learning issues at Honesdale, Pennsylvania. New Jersey Camp Jaycee is a collaborative effort between the New Jersey Jaycees and the Arc of New Jersey , with a mission of providing quality camping experiences to persons with developmental disabilities. Recreation • Island Dolphin Care http://www.islanddolphincare.org/ • Cub Scout Pack 64- Chester County http://www.cubscoutpack64.com/ Island Dolphin Care is a 501(c)3 not for profit organization that provides dolphin therapy to children with critical illnesses, disabilities and special needs from all over the world. We invite you to meet our therapy staff, learn about dolphin assisted therapy, explore great resources for families, and meet our dolphins. We are a Cub Scout Pack in the Chester County, PA Council, run by parents of boys on the autism spectrum. We are a group of about 20 boys that are having fun and enjoying activities that would be hard to involve them in without their own special pack. • Upper Main Line YMCA-Open Doors http://www.umly.org/UMLY/displayInfo.asp?branchID=1&progID=7504 Open Doors is a unique program at the heart of the YMCA mission for persons who are differently-abled. It is ability, not disability that counts, and it is the possibilities that are most important! 92 • Camp Joy www.campjoy.com Weekend Getaways occur throughout the fall and spring. Beginning Friday evenings and winding down Sunday mornings, the sleep-over Getaway programs feature lots of camp fun: sing-alongs, storytelling, pizza parties, talent shows, and occasional excursions. Most of the Getaway staff members are selected from our Summer Camp counselor team. Psycho-educational Testing • Bryn Mawr Child Study Institute http://www.brynmawr.edu/csi/ • Margaret Kay http://www.margaretkay.com/ • Neurodevelopmental Psychology Center at Widener University The Child Study Institute of Bryn Mawr College provides a multidisciplinary approach to academic and interpersonal difficulties experienced by children, adolescents, adults and families. Highly qualified specialists in psychological assessment, educational support services, speech-language therapy, and psychotherapy work together as a team, collaborate closely with parents, and consult with teachers to help foster adjustment and competence in school, at home and in the community. http://www.widener.edu/Academics/Schools_amp_Colleges/School_of_Human_Service_Professions_/Institute_for_Graduate_Clinical _Psychology/Neuropsychology_Assessment_Center/5338/ The Neuropsychology Assessment Center (NAC) specializes in neuropsychological evaluations for the investigation of a variety of psychological conditions. These include conditions pertaining to learning disabilities, brain injuries, epilepsy, autistic spectrum disorders, speech and language delays, and social interaction problems. The center also provides personality assessments and intellectual evaluations. • Main Line Clinical Associates http://www.mainlineclinical.com/Testing.html Psychologists • CHOP Department of Psychology http://www.chop.edu/consumer/jsp/division/service.jsp?id=26704 The Department of Psychology at The Children's Hospital of Philadelphia provides comprehensive inpatient and outpatient psychological services for infants, children and adolescents with pediatric conditions and their families. • Main Line Clinical Associates http://www.mainlineclinical.com/index.html • Autism Spectrum Resource Center http://www.autismsrc.org Our mission is to provide therapeutic services and educational resources to individuals within the autism spectrum and their families. We recognize the special challenges that they confront in everyday living and respect their unique approach to life. Our goal is to provide an environment where they will find a sense of belonging with like-minded individuals. We seek to promote a positive self-image that reflects their strengths, potential for growth, and unique contribution to our world. 93 Psychiatrists • CHOP Department of Psychiatry http://www.chop.edu/consumer/jsp/division/service.jsp?id=27690 The Department of Child and Adolescent Psychiatry offers an array of outpatient and emergency services. We provide comprehensive evaluation and treatment of children and adolescents with psychiatric conditions and behavioral or emotional difficulties. Our specialty clinics include the Attention Deficit Hyperactivity Disorders program, the Mood and Anxiety Disorders clinic and the Pediatric Psychopharmacology program. We are actively engaged in clinical research to support state of the art patient care. Opportunities for Financial Giving/Support • The Hearts and Smiles Foundation PO Box 1253 Southampton, PA 18966 215-669-4221 Fax 215-997-7987 heartsandsmiles@comcast.net 94 Autism Internet Resources: Información en Español · El Autismo, hoja informativa de NICHCY. www.nichcy.org/pubs/spanish/fs1stxt.htm · Visite la Asociación Nuevo Horizonte. www.autismo.com Encuentre información de autismo en inglés y español, videos, libros, enlaces a otras organizaciones, estadísticas y un ¡chat! · Visite el "Indiana Resource Center for Autism" (IRCA). www.iidc.indiana.edu/irca El IRCA ofrece una variedad de materiales en español acerca del autismo y desórdenes relacionados. Visite: www.iidc.indiana.edu/irca/fspanish.html · NINDS es el Instituto Nacional de Desórdenes Neurológicos y Derrames Cerebrales. www.ninds.nih.gov/disorders/spanish/autismo.htm NINDS tiene disponible en español una hoja informativa extensa acerca del autismo. (En inglés, NINDS es el "National Institute on Neurological Disorders and Stroke.") · De la casa publicadora Woodbine. www.woodbinehouse.com La casa publicadora Woodbine ofrece Niños Autistas: Guía para Padres, Terapeutas y Educadores, un libro que habla sobre cómo el autismo afecta los primeros seis años de vida de un niño. Comuníquese con Woodbine a través del Internet o por medio de su línea libre de costo: 1.800.843.7323. · Información general sobre el autismo. www.autism-society.org/site/PageServer Cortesía de Autism Society of America. · AutismOnline. www.autismonline.org AutismOnline conecta a padres de niños que han sido diagnosticados recientemente y a profesionales que trabajan con estos niños a recursos, grupos de apoyo e información sobre investigaciones. Los recursos en español se encuentran disponibles en: www.autismonline.org/bookspan.htm · Información médica sobre el autismo. www.nlm.nih.gov/medlineplus/spanish/ency/article/001526.htm De la Libería Médica de los Estados Unidos, cortesía de Medline Plus en español, "Autismo." Discute brevemente, desde una perspectiva médica, la definición de autismo y sus características, nombres alternos, exámenes diagnósticos, tratamiento, prognosis y prevención. · El niño autista. www.aacap.org/publications/apntsfam/autistic.htm Hoja informativa cortesía de American Academy of Child and Adolescent Psychiatry. · "Cuando su niño/niña es diagnosticado con alguno de los desórdenes en la gama del autismo." www.iidc.indiana.edu/irca/fspanish.html 95 Una publicación de Indiana Resource Center for Autism. · La genética del autismo. www.exploringautism.org/spanish/ · Un tesoro de materiales en español sobre el autismo. www.autismo.com/scripts/articulo/slistaesp.idc? Visite la Asociación Nuevo Horizonte y encuentre mucha información sobre los desordenes bajo la gama del autismo (PDD). El enlace de arriba le llevará a diferentes artículos, tales como: o Autismo: reconocer las señales en niños pequeños www.autismo.com/scripts/articulo/smuestra.idc?n=humphries o El autismo: entender la mente y componer las piezas www.autismo.com/scripts/articulo/smuestra.idc?n=happe o Preguntas más frecuentes sobre autismo www.autismo.com/scripts/articulo/slistafaq.idc? o Discurso narrativo: pautas para la evaluación y la intervención www.autismo.com/scripts/articulo/smuestra.idc?n=mgortazar2 o Bases de un programa de atención temprana para trastornos del espectro autista www.autismo.com/scripts/articulo/smuestra.idc?n=mgortazar3 o Apuntes sobre la prevalencia del espectro autista www.autismo.com/scripts/articulo/smuestra.idc?n=wingpotter o Autismo, síndrome de Asperger y trastorno semántico-pragmático. ¿Dónde están los límites? www.autismo.com/scripts/articulo/smuestra.idc?n=hfa2 o Síndrome de Asperger, autismo de alto funcionamiento y trastornos del espectro autista www.autismo.com/scripts/articulo/smuestra.idc?n=smith1 o Diferencia entre el autismo de alto funcionamiento y el síndrome de Asperger www.autismo.com/scripts/articulo/smuestra.idc?n=munro1 o Despúes del diagnóstico: empezando a actuar www.autismo.com/scripts/articulo/smuestra.idc?n=despuesdiag http://www.manitasporautismo.com/ http://www.njcosac.org/cosac2/espanol Estrategias para sobrevivir a la integración de un niño autista en la escuela secundaria www.autismo.com/scripts/articulo/smuestra.idc?n=secundaria 96 Spanish pamphlets and manuals, Special education: Folletos en Español (all available at www.elcpa.org) · El Derecho a la Educación Especial en Pennsylvania: Una Guía Para Padres (The Right to Special Education in Pennsylvania: A Guide for Parents) - AVISO · Como Obtener Ayuda Para Niños que Están Aprendiendo Inglés (How to Get Help for English Language Learners) · ¿Cuando Puede Ser Expulsado(a) Su Hijo(a) Por Armas a La Escuela? (Act 26) (When Can Your Child be Expelled for Bringing Weapons to School?) · Los Derechos de Estudiantes con Impedimentos Físicos, o de Salud o Salud Mental, Que No Necesitan Educación Especial (Rights of Students with Physical, Mental or Health Impairments Who Do Not Need Special Education – Chapter 15) · La Disciplina Escolar y Los Estudiantes Con Incapacidades (School Discipline and Students with Disabilities) · ¿Qué Puede Hacer Si Su Hijo(a) Está Siendo Hostigado(a) Por Otros Estudiantes En La Escuela? (What Can You Do If Your Child with a Disability is Being Harrassed by Other Students?) · Suspension y Expulsion en Pensilvania: Derechos del Estudiante (Suspension and Expulsion in Pennsylvania) · Transportación Para Estudiantes Con Impedimentos en Pennsylvania (Transportation for Students with Disabilities in Pennsylvania) · Carta al Departamento de Educacion Pidiendo Ayuda Para un Nino Sin Hogar (Letter to PA Department of Education Seeking Help for Homeless Child) For more information, please contact: Emilio Pacheco, Vision for Equality, Inc. Cast Iron Building 718 Arch Street 6N Floor Philadelphia, PA 19106 215-923-3349 ext 118, 215-923-3038 fax 97 Where to Order or Download Free Materials Online - Spanish National Institute of Neurological Disorders and Stroke National Institutes of Health http://www.ninds.nih.gov/disorders/spanish/ Nation Institutes of Health Website (search for “autismo”) http://salud.nih.gov/ DPW - Application for Health Care Coverage Spanish http://www.dpw.state.pa.us/Resources/Documents/Pdf/FillInForms/Medical/PA600CH-S.pdf 98 Resources Created With Funding from DPW- Bureau of Autism Services Grant The following materials were created with funding from DPW/BAS to better serve our Hispanic clients and their families. The forms were compiled and created by master’s level educators, case managers, psychologists, and nurse practitioners, all with several years working with children with autism. 99 The CATCH Team Childhood Autism Team CHeck A Collaborative Team Approach to evaluate children for autism spectrum disorders and provide recommendations from a medical, educational and behavioral perspective for children up to 5 years of age. The CATCH Team Discovering your child may have a developmental delay or disability can be the hardest challenge a parent may have to face. Getting a diagnosis and finding out what to do to help your child can be a daunting process. Families typically go through many assessments and spend many hours trying to get a diagnosis and identify appropriate services within systems. The CATCH Team was developed to bring the 3 necessary systems together, education, medical and behavioral health, to facilitate an evaluation that provides a diagnosis and recommendations from all three systems to make it easier for families. The CATCH Team includes: -CATCH Team Administrator -CATCH TEAM case manager -Developmental Pediatrician from Children’s Hospital of Philadelphia -Early Intervention case Manager -School Psychologist -Rep from Behavioral Health -and parents! 100 Answers to Frequently Asked Questions Who is eligible? All children who are residents of Chester County School districts and are between the ages of Birth-5 years old are eligible. How much does it cost? This program is free to all children who are residents of Chester County School districts. Once I call Early Intervention, how does my child get referred to the CATCH Team? Children in Early Intervention are screen with the M-Chat or other tool. If a child scores at risk for autism, the child and family can be referred for a CATCH Team assessment. How long will I have to wait to get a diagnosis for my child? Once children are referred to the CATCH Team, the assessment and feedback is scheduled with an average wait time of 3-months. Early Identification is Key! The optimal time for early identification is during your child’s well-child examination in the primary care setting, as pediatric clinicians have regular contact with the majority of children in this age range. For developmental milestones, go to www.firstsigns.org. If you or your physician have concerns of a developmental delays or autism for your child, call Early Intervention in Chester County. If your child is 0-3 years of age, please call: 1-800-692-1100 x 5948 or 610-344-5948 or 5949 If your child is 3 to 5 years of age, please call: 484-237-5150 The CATCH Team assessments take place at the Chester County Intermediate Unit 455 Boot Road Downingtown, PA 19335 101 What is Autism? Autism is a neurobiological disorder that is present before the age of three and continues through adulthood. Autism is characterized by a delay in communication, socialization and the presence of stereotyped behaviors. The current rate of Autism is 1 in 150 children can have an Autism Spectrum Disorder. (Center for Disease and Control 2007) Autism is four times more common in boys then girls. Autism knows no racial, ethnic, social boundaries, family income, lifestyle, or educational levels and can affect any family, and any child. Children with autism vary widely in abilities, intelligence, and behaviors. The earlier a child is identified with autism, the better the long-term outcomes. Red Flags ~No big smiles or other warm, joyful expressions by six months or thereafter. ~No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter ~No babbling by 12 months No back-and-forth gestures, such as pointing, showing, reaching or waving by 12 months. ~No words by 16 months ~No two-word meaningful phrases (without imitating or repeating) by 24 months ~ANY loss of speech or babbling or social skills at ANY age Red Flags from First Signs & compiled from the following sources:Greenspan, S.I. (1999) Building Healthy Minds, Perseus Books Filipek, P.A., et al. Practice Parameter; Screening and diagnosis of autism. Neurology 2000, 55:468-79 102 El Equipo CATCH Evaluación de Equipo de Autismo Infantil (Childhood Autism Team CHeck) Un Enfoque de Equipo Colaborador para evaluar a niños por síndrome de espectro autista y entregar recomendaciones desde una perspectiva médica, educacional, y conductual para niños de hasta 5 años de edad. El Equipo CATCH Descubrir que su hijo puede sufrir de un retardo de desarrollo o discapacidad puede ser el desafío más difícil que un padre pueda enfrentar. Lograr un diagnóstico y descubrir qué hacer para ayudar a su hijo puede ser un proceso abrumador. Las familias tipicamente recurren a muchas evaluaciones y gastan muchas horas intentando lograr un diagnóstico e identificar los servicios apropiados dentro de los sistemas. El Equipo CATCH fue desarrollado para unir los 3 sistemas necesarios, educación, salud médica y conductual, para facilitar una evaluación que proporcione un diagnóstico y recomendaciones de los tres sistemas para facilitar el proceso a las familias. El Equipo CATCH incluye: -Administrador de Equipo CATCH -Encargado del Caso CATCH TEAM -Pediatra del Desarrollo del Children’s Hospital of Philadelphia - Encargado de Caso de Intervención Temprana -Psicólogo de la escuela -Representante de Salud Conductual -¡y los Padres! 103 Respuestas a Preguntas Frecuentes ¿Quien es eligible? Todos los niños que son residentes de los distritos escolares del Condado de Chester y cuya edad sea de hasta 5 años son eligibles. ¿Cuanto cuesta? Este programa es gratuito para todos los niños que son residentes de los distritos escolares del Condado de Chester. Una vez que llame a Intervención Temprana, ¿Como es referid mi hijo al equipo CATCH? Los niños en Intervención Temprana son evaluados con M-Chat u otra herramienta. Si un niño es considerado en riesgo de autismo, el niño y su familia pueden ser referidos para una evaluación del Equipo Catch. ¿Cuánto deberé esperar para obtener un diagnóstico para mi hijo? Una vez que un niño ha sido referido al Equipo Catch, la evaluación y comentarios son programados con un tiempo medio de espera de 3 meses. ¡La Identificación temprana es Esencial! El periodo óptimo para identificación temprana es durante las evaluaciones pediátricas de su hijo en el ambiente de atención primaria de salud, puesto que los pediatras tienen contacto regular con la mayoría de los niños en este rango de edad. Para información respecto de las señales de desarrollo, visite www.firstsigns.org. Si Ud. o su pediatra tienen dudas respecto de retardos de desarrollo o autismo en su hijo, llame a Intervención Temprana en el Condado de Chester. Si su hijo es de 0-3 años de edad, por favor llame al: 1-800-692-1100 x 5948 o 610-344-5948 o 5949 Si su hijo tiene entre 3 y 5 años de edad, por favor llame al: 484-237-5150 Las evaluaciones del Equipo CATCH se realizarán en la Unidad Intermedia del Condado de Chester 455 Boot Road Downingtown, PA 19335 104 ¿Que es Autismo? El autismo es un síndrome neurobiológico que se presenta antes de los 3 años de edad y continúa hasta la edad adulta. El autismo se caracteriza por un retardo en la comunicación, socialización y la presencia de comportamientos estereotipados. La tasa actual de autismo es de 1 en 150 niños que pueden presentar un Síndrome de Espectro Autista (Centro de Enfermedad y Control – CDC 2007) El autismo es cuatro veces más frecuente en niños que en niñas. El autismo no conoce límites raciales, étnicos, o sociales, ni ingresos familiares, estilo de vida o nivel de educación, y puede afectar a cualquier familia, y a cualquier niño. Niños con autismo presentan una comportamiento. gran variedad en habilidades, inteligencia, y Mientras antes se identifique a un niño con autismo, mejores son los resultados de largo plazo. Señales de Advertencia ~Sin grandes sonrisas u otras expresiones cálidas y alegres a los seis meses o después. ~Sin compartir sonidos, sonrisas, u otras expresiones faciales a los nueve meses o posterior ~Sin balbucear a los 12 meses ~Sin gestos recíprocos, tales como apuntar, mostrar, alcanzar, o agitar las manos a los 12 meses. ~Sin palabras a los 16 meses o después ~Sin frases de dos palabras con significado (sin imitar o repetir) a los 24 meses odespués ~CUALQUIER pérdida de lenguaje o balbuceo o habilidades sociales a CUALQUIER edad Señales de Advertencia de Primeras Señales y compilado de las siguientes fuentes:Greenspan, S.I. (1999) Building Healthy Minds, Perseus Books Filipek, P.A., et al. Practice Parameter; Screening and diagnosis of autism. Neurology 2000, 55:468-79 105 Autism Spectrum Disorders FACT SHEET -The current rate of Autism from the CDC (Center for Disease and Control) is 1 in 150 children can have an Autism Spectrum Disorder (ASD). -Autism knows no racial, ethnic, social boundaries, family income, lifestyle, or educational levels and can affect any family, and any child. - Autism is a lifelong neuro-biological disorder that affects communication, social interaction skills and leisure and play activities. - Autism is four times more common in boys than girls. - Early diagnosis and intervention are very important for children with autism. - Other features that may be present include difficulties in eating, sleeping and toileting, unusual fears, lack of awareness of danger, and self-injury. - Children with autism vary widely in abilities, intelligence, and behaviors. -The Spectrum of disorders includes many diagnostic terms including: Autistic Disorder, Asperger’s Disorder, Rett’s Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) - Some children with autism will receive a duel-diagnosis of Mental Retardation at some point in life. - Scientists believe that both genetics and environment play a role in the cause of autism. - Children do not “grow out” of autism but their symptoms improve with therapy and intervention. - The cause of autism is unknown but it is known that parents do NOT cause autism. 106 Desórdenes de Espectro Autista HOJA DE DATOS - La actual tasa de Autismo detallada por el CDC (Centro para Enfermedades y Control) es de 1 en 150 niños con Síndrome de Espectro Autista (ASD). - El autismo no conoce delimitaciones raciales, étnicas, o sociales, ni ingreso familiar, estilo de vida o nivel de educación y puede afectar a cualquier familia y a cualquier niño. - El autismo es un síndrome neurobiológico crónico que afecta la comunicación, habilidades de interacción social y actividades de diversión y juego. - El autismo es cuatro veces más frecuente en varones que en mujeres. - El diagnóstico e intervención tempranos son muy importantes para niños con autismo. - Otros síntomas que pueden estar presentes incluyen dificultades para comer, dormir, ir al baño, temores poco frecuentes, falta de percepción de peligro, y autoagresión. - Los niños con autismo tienen habilidades, inteligencia, y conductas variables. ampliamente - El Espectro de síndromes incluye muchos términos de diagnóstico, incluyendo: Síndrome Autista, Síndrome de Asperger, Síndrome de Rett, Síndrome Desintegrativo de Infancia, y Síndrome General de Desarrollo No Específico (PDD-NOS) - Algunos niños con autismo recibirán un doble diagnóstico de Retardo Mental en algún momento de sus vidas. - Los científicos creen que tanto la genética como el ambiente juegan roles importantes en la causa del autismo. - Los niños no “superan” el autismo, pero sus síntomas mejoran con terapia e intervención. - La causa del autismo es desconocida, pero se sabe que los padres NO causan el autismo. 107 Getting a diagnosis of autism for your child….. One of the most common things that families ask themselves during this time is… why? Why is this happening to my child? Why is this happening to my family? What caused this? Did I do something too much or too little? Did another family member do something too much or too little? Being told that your child has autism may be the most difficult time for parents of a child with an Autism Spectrum Disorder. Each family member will deal with the diagnosis in his or her own way; most members will experience some or all stages of the grieving process (denial, anger, bargaining, depression and acceptance). At this time, scientists and researchers do not know exactly what causes autism but they are sure that autism is not caused by the lack of loving a child enough or not spending enough time with them. Research has indicated that genetic factors are the most likely cause of autism and that environmental factors may play a role. But again, absolutely nothing indicates that the home environment or experience provided by family members is a cause. The second difficult step after accepting the diagnosis is families deciding on what treatments and interventions to pursue for their child. There is no single treatment for Autism Spectrum Disorders, but there are several intervention options that are available to families. The most common delivery system for interventions that children with Autism Spectrum Disorder receive is through Special Education from the Public Education system. Special Education is available for children with Autism Spectrum Disorders from birth to 21 years old and can involve Speech therapy, Occupational therapy and Physical therapy in addition to academic and social skills. An intervention commonly used is behavior management therapy, which is based on Applied Behavior Analysis, which uses methods to reinforce desired behaviors and decreases unwanted behaviors. One other 108 method of treatment to consider is medication though the medical system. There is no medication specifically to treat an Autism Spectrum Disorder but there is medication available that can treat symptoms and sometimes reduce severe unwanted behaviors. There are also services provided through Medical Assistance. Sometimes, families can find these treatments intrusive in their family’s life. They involve therapists coming into the home and treating the child within the home with specific interventions. The positive aspect to this treatment is doing interventions with the child, within the home. The therapists can then educate the family about what techniques are successful with their child. These services are called Behavioral Health Rehabilitation Services or Wraparound Services and include TSS (Therapeutic Support Staff), BSC (Behavior Specialist Consultants) or MT (Mobil Therapists). Children learn best when the people around them are consistent, and children with autism respond very well when the people around them are supporting the same interventions. Finally, parents and families should feel comfortable talking to professionals, support groups and each other about the struggles that their family is facing as a result of the child being diagnosed with an Autism Spectrum Disorder. The more family members involved in the child’s life, the harder it is to maintain consistency with the child. However, it is not impossible for even large extended families to be consistent at home. Everyone handles this difficult diagnosis differently, but keeping in mind the child’s needs and family support will be meaningful for good long-term outcomes for the child and family. 109 Lograr un diagnóstico de autismo para su hijo….. Una de las cosas más comunes que las familias se preguntan durante este período de tiempo es... ¿Por qué? ¿Qué le está pasando a mi hijo? ¿Por que le está pasando esto a mi familia? ¿Qué causó esto? ¿Hice algo demasiado o demasiado poco? ¿Algún otro integrante de la familia hizo algo demasiado o demasiado poco? Recibir la noticia que su hijo tiene autismo puede ser el momento más difícil de manejar para padres de un niño con Síndrome de Espectro Autista. Cada integrante de la familia enfrenta el diagnóstico en forma diferente; la mayoría experimentará algunas o todas las etapas del proceso de duelo (negación, enojo, discusión, depresión y aceptación). En este momento los científicos e investigadores no saben exactamente cuál es la causa del autismo, pero están seguros que no es causado por falta de afecto hacia el hijo o por no compartir suficiente tiempo con él. Las investigaciones han indicado que factores genéticos son la causa más probable del autismo y que los factores ambientales pueden jugar un rol. Debemos enfatizar nuevamente que absolutamente nada indica que el ambiente hogareño o experiencia entregada por los integrantes de la familia sea una causa. El segundo paso difícil luego de aceptar el diagnóstico es que las familias decidan qué tratamientos e intervenciones seguir con su hijo. No hay un tratamiento único para el Síndrome de Espectro Autista, sino que hay varias opciones de intervención disponibles para familias. El sistema más común de entrega de las intervenciones que los niños con Síndorme de Espectro Autista reciben es a través de la Educación Epecial en el sistema de Educación Pública. La Educación Especial está disponible para niños con Síndrome de Espectro Autista desde su nacimiento hasta los 21 años de edad y puede incluir terapia de Lenguaje, terapia Ocupacional, y terapia Física además de habilidades académicas y sociales. Una intervención que comunmente se usa es terapia de manejo de la conducta, que se basa en Análisis Conductual Aplicado, que usa métodos para reforzar conductas deseadas y disminuir conductas no deseadas. Otro método de tratamiento a considerar es 110 medicamentos vía el sistema médico. No hay medicamentos específicos para tratar el Síndrome de Espectro Autista, pero hay medicamentos disponibles que pueden tratar síntomas y a veces reducir conductas no deseadas severas. También hay servicios proporcionados a través de Asistencia Médica. Algunas veces, las familias pueden sentir que estos tratamientos son invasivos de su vida familiar. Estos incluyen a terapeutas que visitan los hogares y tratan al niño dentro del hogar con intervenciones específicas. El aspecto positivo de este tratamiento es realizar las intervenciones con el niño, dentro del hogar. El terapeuta puede en esta instancia educar a la familia respecto de las técnicas que son exitosas con su hijo. Estos servicios se denominan Servicios de Rehabilitación de Salud Conductual o Servicios Englobantes e incluyen TSS (Personal de Apoyo Terapéutico), BSC (Consultores Especialistas en Conducta) o MT (Terapeutas Móviles). Los niños aprenden mejor cuando las personas que los rodean son consistentes, y los niños con autismo responden muy bien cuando las personas que los rodean apoyan las mismas intervenciones. Finalmente, los padres y familias deberían sentirse cómodos hablando con profesionales, grupos de apoyo y entre sí respecto de las dificultadas que su familia enfrenta como resultado del diagnóstico de Síndrome de Espectro Autista del niño. Mientras más integrantes de la familia estén involucrados en la vida del niño, más difícil es mantener la consistencia con el niño. Sin embargo, no es imposible aún para familias extendidas ser consistentes en casa. Cada uno maneja este difícil diagnóstico en forma diferente, pero recordar las necesidades del niño y el apoyo familiar tendrán significado para obtener buenos resultados de largo plazo para el niño y la familia. 111 Frequently Asked Questions Regarding Potty Training By Mary Barbera, RN, MSN, BCBA The following are my answers to some Frequently Asked Questions regarding potty training. What age should I start? Consider the child’s developmental age. If a child with autism just turned 3 but has a developmental age of 18 months, it is probably too early to start an official program. However there are some steps you can do prior to potty training: 1) Keep the child dry and clean by changing diaper frequently; 2) Comment— “your very wet;” 3) Place the child on a potty in the morning and at bath time—reward heavily if he is successful; 4) Boys should sit on the potty for urination until they are fully bowel trained. My child is 3 and just got diagnosed. Potty training is a priority as I am expecting our second child next month. Should I start a program? If a newly diagnosed child is starting a school or home program, you probably want to gain attention and compliance with easy programs first. You also want to establish a good positive behavior program (without any negative reinforcement or consequences) before attempting potty training. This is obviously a very stressful time for you and your child so I would put it off for a several months if possible since stressful times are not conducive to successful potty training. You have to be committed and have good carry through for a program to work. You need at least 2 solid weeks to be home a lot and be committed to working almost solely on potty training. Also, I would look at the 3 months that follow the start date of your program and avoid planned events like the birth of a sibling. My child urinates on the potty if I put him on at bath time but never shows interest throughout the day. How can I motivate him to initiate using the potty? A child is usually trained for urination using a schedule before he starts to initiate. Another key to potty training is determining what will motivate your child. Choose a reinforcer that your child goes crazy over. “Good job!” usually isn’t enough to motivate any child. If your child loves m&m’s, only give him this special reinforce after a successful trip to the potty. Another option is to go to the Dollar Store and fill a bag so your child can pick a toy after each success. I would not recommend using long-term reinforcers for potty training for any child, especially those with autism (for example, “I’ll buy you a train set when you go pee on the potty for one week”). Make sure rewards are immediate, tangible and motivating to your child. My child is 5 but I don’t think he has the verbal or cognitive ability to be trained. Are there some cases when potty training is just not feasible? Azrin and Foxx suggest that by 5 years of age, even severely retarded children (IQ of about 30) can be successfully toilet trained. Are there books or videos I should get to prepare myself and/or my child? Yes, if your child likes videos there are many books and videos on the subject. My favorite is Once Upon a Potty (for Him or Her). For parents, Toilet Training in Less than a Day by Foxx and Azrin is a great place to start and is available for under $7 at amazon.com. Another great resource is Toilet Training for Children with Severe Handicaps by Dunlap, Koegel and Koegel available for under $5 by calling 304696-2332. Finally, if you are attempting to train adults or children on the severe end of the spectrum, a good resource is Toilet Training Persons with Developmental Disabilities: A Rapid Program for Day and Nighttime Independent Toileting by Richard Foxx. 112 Our Child has always worn diapers. Should he continue to wear diapers or pull-ups during training? No. One of the keys to successful toilet training is for the child to wear regular underwear during the day. The child needs to feel wet and you need to spot the accident promptly during the training. During the initial weeks of training, if you prefer, the child can wear only underwear (no pants) and a shirt if you are at home. You can get waterproof pants or use a diaper or pull-up to put over underwear if needed when you take the child out. Unless the child wakes up consistently dry, putting a diaper or pull-up on at bedtime is acceptable both in the short term and in the long term since many children with and without autism have nighttime accidents. First thing after waking, the child should be taken to the potty and the diaper removed. Of course, if the child wakes up dry he should receive lots of reinforcement. OK, I think I’m ready. What are the components of a formal toilet training program? There are five basic steps as outlined in both the Azrin and Foxx book as well as the one by Dunlap, Koegel, and Koegel. Because of space limitations, I will only briefly describe each step. 1) Extra Drinks: The child should be given salty foods and extra drinks to allow more opportunities for toileting during the training period. 2) Scheduled Toileting: This should happen at least 1-2 times per hour. Tell the child “Time to go to the bathroom/potty?” Have them say or sign “toilet/potty” and take them. The child should be heavily reinforced if he urinates or has a BM. Once the child starts initiating, the schedule should be dropped. 3) Dry Pants Checks: There are 2 purposes for this. One is to allow for detection of accidents. The other is to reward the child for having dry pants. The child should be asked “Are your pants dry?” These dry pants checks can be done at intervals of 5 minutes to an hour depending on the level of success. If you notice an accident, a dry pants check should be done immediately. 4) Positive Practice (or at least a neutral tone) for Accidents: Some toileting experts such as Dr. Richard Foxx suggest that Positive Practice is a very important step in the toilet training process. Positive practice involves taking a child quickly from the spot of the accident to the toilet and back again 5-10 times. For more details on this step, read Toilet Training in Less than a Day by Azrin and Foxx. I usually don’t recommend this step initially, especially if the child is larger or if he is in a setting outside the home where the positive practice procedure can be stigmatizing. If you chose not to implement this step of the procedure when you toilet train, make sure you are do not laugh, smile or give your child positive attention after accidents. Have the child participate in the clean up procedure as much as possible and redirect him or her to a neutral activity. 5) Data Recording: You will need to record all successful trips to the potty as well as urine or BM accidents. This will help indicate the length of time between urination as well as the usual times for BM’s. Keeping data will also help you measure the success of you toileting program. How long will the toilet training process take? Some children with severe disabilities train completely in a week and some take months. If your child regresses and starts having accidents after being trained, start implementing the steps of the formal program to get him back on track. Some children and adults with disabilities who are very difficult to toilet train or who regress with toileting need a toileting plan developed and coordinated by a medical practitioner or behavior analyst. Don’t be afraid to seek assistance from a qualified professional if you are having difficulties with toileting. For more information on potty training, read Chapter 11 of my book: The Verbal Behavior Approach: How to Teach Children with Autism and Related Disorders. The information in this paper is not intended to serve as professional advice nor as a substitute for consultation with medical and behavioral professionals. 113 Preguntas Frecuentes Respecto del Entrenamiento Para Dejar los Pañales Por Mary Barbera, RN, MSN, BCBA Las siguientes son mis respuestas a algunas Preguntas Frecuentes respecto del entrenamiento para ir al baño. ¿A qué edad debo empezar? Considere la edad de desarrollo de su hijo. Si un niño con autismo acaba de cumplir 3 años, pero tiene una edad de desarrollo de 18 meses, probablemente sea demasiado temprano para comenzar un programa oficial. Sin embargo hay algunos pasos que puede realizar antes del entrenamiento para ir al baño: 1) Mantenga al niño seco y limpio cambiando los pañales frecuentemente; 2) Comente —“estás muy mojado;” 3) Lleve al niño al baño en la mañana y al momento de bañarlo – recompense fuertemente si tiene éxito; 4) Los niños deben sentarse en el inodoro para orinar hasta que estén completamente entrenados para ir al baño. Mi hijo tiene 3 años y acaba de ser diagnosticado. El entrenamiento para ir al baño es una prioridad debido a que daré a luz a nuestro segundo hijo el próximo mes. ¿Debo comenzar un programa? Si un niño recién diagnosticado está comenzando un programa escolar o en un hogar, probablemente quiera lograr atención y cumplimiento con programas fáciles primero. También necesita establecer un buen programa de comportamiento positivo (sin refuerzos negativos ni consecuencias) antes de intentar el entrenamiento para ir al baño. Este es obviamente un tiempo de alto estrés para Ud. y su hijo, así es que yo lo postergaría por varios meses de ser posible, puesto que los momentos de alto estrés no son conducentes a un entrenamiento exitoso para aprender a ir al baño. Debe estar comprometido y tener mucha dedicacón para que un programa funcione. Necesita al menos 2 semanas completas de permanencia constante en casa y estar comprometido a trabajar casi exclusivamente en el entrenamiento para dejar los pañales. Además, yo revisaría los tres meses siguientes a la fecha de inicio del programa y evitaría cualquier evento planificado tal como el nacimiento de un hermano. Mi hijo orina en el baño al momento de bañarlo, pero nunca muestra interés durante el día. ¿Como puedo motivarlo a comenzar a usar el inodoro? Un niño es normalmente entrenado para orinar usando un horario antes que comience a iniciar. Otro punto clave del entrenamiento para usar el baño es determinar qué motivará al niño. Elija un refuerzo que motive mucho al niño. “¡Bien Hecho!” normalmente no es suficiente para motivar a ningún niño. Si a su hijo le encantan los M&M, solo entreque este refuerzo luego de que tenga éxito en el baño. Otra opción es visitar una tienda de juguetes baratos y llenar una bolsa para que su hijo pueda elegir un juguete después de cada éxito. No recomendaría usar refuerzos de largo plazo para entrenamiento para ir al baño en ningún niño, especialmente aquellos con autismo (por ejemplo, “Te compraré un tren de juguete cuando orines en el inodor por una semana seguida”). Asegurese que las recompensas sean inmediatas, tangibles y motivantes para su hijo. Mi hijo cumplió cinco años pero no creo que tenga la habilidad verbal o cognitiva para ser entrenado. ¿Hay algunos casos en que el entrenamiento para ir al baño simplemente no sea factible? Azrin y Foxx sugieren que para la edad de 5 años, incluso niños con retardo mental severo (CI cercano a 30) pueden ser entrenados exitosamente para ir al baño. 114 ¿Hay libros o videos que yo debería conesguir para prepararme yo y/o a mi hijo? Sí, si a su hijo le gustan los videos, hay muchos libros y videos respecto del tema. Mi favorito es “Once Upon a Potty (for Him or Her)”. Para padres, “Toilet Training in Less than a Day” por Foxx y Azrin es un gran punto de inicio y está disponible por menos de US$7.00 en amazon.com. Otro gran recurso es “Toilet Training for Children with Severe Handicaps” por Dunlap, Koegel y Koegel disponible por menos de US$5 llamando al 304-696-2332. Finalmente, si está intentando entrenar a adultos o niños en el extremo severo del espectro, un buen recurso es Toilet Training Persons with Developmental Disabilities: A Rapid Program for Day and Nighttime Independent Toileting” por Richard Foxx. Nuestro hijo siempre ha usado pañales. Debería seguir usando pañales o pañales “pull-up” durante su entrenamiento? No. Una de las claves para un entrenamiento exitoso para dejar los pañales es que el niño use ropa interior normal durante el día. El niño necesita sentirse mojado y Ud. necesita observar el accidente prontamente durante el entrenamiento. Durante las semanas iniciales de entrenamiento, si lo prefiere, el niño puede usar unicamente ropa interior (sin pantalones) y una camisa si está en casa. Puede obtener pantalones impermeables o usar un pañal o pañal “pull-up” sobre la ropa interior de ser necesario cuando salga con su hijo. A menos que el niño despierte consistentemente seco, cambiar a un pañal o pañal “pull-up” al acostarlo es aceptable tanto en el corto como en el largo plazo puesto que muchos niños con o sin autismo tienen accidentes nocturnos. Lo primero que se debe hacer después de despertar es llevar al niño al baño y retirar el pañal. Por supuesto, si el niño despierta seco, debería recibir abuntante refuerzo. OK, Creo que estoy listo. ¿Cuales son los componentes de un programa formal de entrenamiento para ir al baño? Hay cinco pasos básicos que son detallados tanto en el libro de Azrin y Foxx como en el de Dunlap, Koegel, y Koegel. Debido a limitantes de espacio, sólo describiré brevemente cada paso. 1) Bebidas Extra: El niño debe recibir comidas saladas y bebidas adicionales para permitir más oportunidades de ir al baño durante el periodo de entrenamiento. 2) Programe las idas al baño: Esto debería ocurrir al menos 1 – 2 veces por hora. Diga al niño “Hora de ir al baño ?”. Haga que diga “baño” y llévelo. El niño debe ser fuertemente reforzado si orina o hace sus necesidades. Una vez que el niño comience a iniciar, el horario debe ser abandonado. 3) Revisión de Pantalones Secos: Hay 2 propósitos para esto. Uno es permitir la detección de accidentes. El otro es premiar al niño por tener pantalones secos. Al niño se le debe preguntar “¿Están secos tus pantalones?”. Estas revisiones de pantalones secos pueden ser realizadas a intervalos de 5 minutos a una hora dependiendo del nivel de éxito. Si observa un accidente, se debe realizar inmediatamente una revisión de pantalones secos. 4) Práctica Positiva (o al menos de tono neutro) para Accidentes: algunos expertos de baño tales como el Dr. Richard Foxx sugieren que Práctica Positiva es un paso muy importante en el proceso de entrenamiento para dejar los pañales. La práctica positiva involucra llevar al niño rápidamente desde el lugar del accidente al baño o de vuelta 5 a 10 veces. Para mayores detalles respecto de este paso, lea “Toilet Training in Less than a Day” por Azrin y Foxx. Normalmente no recomiendo este paso inicialmente, especialmente si el niño es mayor o si está en un ambiente fuera de su hogar, donde el procedimiento de práctica positiva pueda ser estigmatizante. Si elige no implementar este paso cuando entrene para quitar los pañales, asegurese de no reir, sonreir, o entregar atención positiva luego de 115 accidentes. Haga que el niño participe en el proceso de limpieza lo más posible y reorientelo a una actividad neutral. 5) Registrar Datos: Necesitará anotar todas las idas exitosas al baño así como cualquier accidente. Esto le ayudará a indicar el largo de tiempo entre idas al baño. Mantener datos también le ayuda a medir el éxito de su programa de retiro de pañales. ¿Cuanto tiempo demorará el proceso de entrenamiento para dejar los pañales? Algunos niños con discapacidades severas son completamente entrenados en una semana mientras que otros requieren meses. Si su hijo retrocede y comienza a tener accidentes después de ser entrenado, comience a implementar los pasos del programa formal para volver a enfocarlo. Algunos niños y adultos con discapacidad que son difíciles de entrenar o que retroceden necesitan un plan de entrenamiento para dejar los pañales desarrollado y coordinado por un practicante médico o analista de comportamiento. No tenga miedo de buscar ayuda de un profesional calificado si está teniendo dificultades con el entrenamiento para uso del baño. Para mayor información respecto de entrenamiento para quitar los pañales, lea el capítulo 11 de mi libro: “The Verbal Behavior Approach: How to Teach Children with Autism and Related Disorders”. La información en este artículo no tiene por intención cumplir la función de consejo profesional ni como sustituto de consultas con profesionales médicos y de comportamiento. 116 Applied Behavioral Analysis (ABA): Myths and Facts MYTH: ABA is only for extremely impaired children, who do not speak. FACT: The principles of ABA can be used with children of all developmental and cognitive levels. The types of interventions that will be helpful will vary with each child. MYTH: ABA is rigid and must take place with a child sitting at a table. FACT: Many teaching techniques based on ABA, such as verbal behavior, focus on generalization and teaching a child skills in the environment in which they need to us them. BHRS (Behavioral Health Rehabilitation Services) or wraparound providers can implement ABA techniques while a child is in any natural environment (home, playground, school, community settings). MYTH: ABA creates children who are robotic and who only know the skills that you teach them. FACT: Generalization (using skills in real life scenarios) is a key component of a successful ABA program. A good ABA program will include time and goals dedicated to generalization, or helping children use skills naturally in their environments. MYTH: ABA is expensive, costing families $30,000 to $50, 000/ year. FACT: Many public school settings and private special education settings can implement ABA techniques as part of a classroom. BHRS (wraparound providers) can use ABA in a program that supports the child in a variety of environments. Public education and BHRS services are provided at no cost to families. Please check with your local school district and BHRS provider to find out what services are available and appropriate for your child in your area. MYTH: All children with autism need an intense, 40 hour/ week ABA program. FACT: In the book Educating Children with Autism, the National Research Council recommends: “ . . . that educational services begin as soon as a child is suspected of having an autism spectrum disorder.” Those services should include . . . systematically planned, and developmentally appropriate educational activities geared toward identified objectives. These number of hours will vary according to a child’s chronological age, developmental level, specific strengths, and weaknesses, and family needs. (just keep in mind this is just for little kids-not school age) MYTH: ABA will cure autism. FACT: There currently is no cure for autism. There are many treatments and educational techniques that can improve a child’s skills and decrease their symptoms over time. MYTH: ABA involves punishment, such as hitting or yelling. FACT: ABA therapists and teachers that use ABA focus on reinforcing appropriate behavior through positive reinforcement. In fact, some methods of ABA involve “errorless teaching”. This is where the child isn’t even told “no” during teaching. The teacher or therapist prompts the child at a level that allows them to respond correctly, at any level of mastery. 117 Análisis Aplicado de Comportamiento (ABA): Mitos y Realidades MITO: ABA es sólo para niños con discapacidades muy severas, que no hablan. HECHO: Los principios de ABA pueden ser usados con niños de todo nivel cognitivo y de desarrollo. Los tipos de intervenciones que serán de ayuda variarán de niño en niño. MITO: ABA es rígido y debe ocurrir con un niño sentado frente a una mesa. HECHO: Muchas técnicas de enseñanza basadas en ABA, tales como comportamiento verbal, se enfocan en generalizar y enseñar al niño habilidades en el ambiente en el cual necesita usarlas. BHRS (Servicios de Rehabilitación de Salud Conductual) o proveedores englobantes pueden implementar técnicas ABA mientras un niño se encuentra en cualquier ambiente natural (hogar, patio de recreo, escuela, ambientes comunitarios). MITO: ABA crea niños que son robóticos y que sólo conocen las habilidades que usted les enseña. HECHO: La generalización (usar habilidades en escenarios de la vida real) es un componente clave de un programa ABA exitoso. Un buen programa ABA incluirá tiempo y metas dedicadas a generalización o a ayudar a los niños a usar habilidades naturalmente en sus ambientes. MITO: ABA es costoso, con valores por familia de US$30.000 a US$50.000 / año. HECHO: Muchos distritos escolares y servcios de educación especial de escuelas privadas pueden implementar técnicas ABA com parte de un salón de clases. BHRS (proveedores englobantes) pueden usar ABA en un programa que apoya al niño en variados ambientes. La educación pública y los servicios BHRS son proporcionados sin costo a las familias. Por favor verifique con su distrito escolar local y proveedor BHRS para averiguar que servicios están disponibles y son apropiados para su hijo en su área. MITO: Todos los niños con autismo necesitan un programa ABA intensivo, de 40 horas semanales. HECHO: En el libro Educando Niños con Autismo (Educating Children with Autism), el Consejo Nacional de Investigación (National Research Council) recomienda: “ ... que los servicios de educación comiencen en cuanto se sospeche que un niño tenga un desorden de espectro autista”. Esos servicios deberían incluir ... actividades educativas planificadas en forma sistemática y apropiadas en términos de desarrollo orientadas a objetivos identificados. Este número de horas variará según la edad cronológica del niño, su nivel de desarrollo, fortalezas y debilidades específicas, y las necesidades familiares (recuerde que esto es sólo para niños pequeños – de edad pre-escolar) MITO: ABA curará el autismo. HECHO: Actualmente no hay una cura para el autismo. Hay muchos tratamientos y técnicas de educación que pueden mejorar las habilidades de un niño y disminuir sus síntomas con el transcurso del tiempo. MITO: ABA incluye castigos, tales como golpes o gritos. HECHO: Terapeutas y profesores ABA usan el enfoque ABA de reforzar conductas apropiadas via refuerzo positivo. De hecho algunos métodos de ABA incluyen “enseñanza sin errores”. Esto es cuando al niño ni siquiera se le dice “no” durante la enseñanza. El profesor o terapeuta trabaja con e l niño a un nivel que le permite responder correctamente, a cualquier nivel de maestría. 118 What is Applied Behavior Analysis or (ABA)? ABA refers to a systematic approach to the assessment and evaluation of behavior, and the application of interventions that alter behavior. It is used as the basic principle guiding many teaching methods for children with autism and also the basis for the Behavioral Health Rehabilitation Services (Wraparound) that are available for children in Pennsylvania. Basically, ABA looks at all behavior (social, academic, adaptive, physical, etc.) and breaks it down into 3 basic parts. 1. Antecedent – what happens right before the behavior (could be a command, and environmental change, or an action by another person) 2. Behavior – exactly what the person does this is measurable, and tangible. (examples: saying the word “home” more than 3 times in a row, standing up and walking towards a doorway, scribbling on a worksheet, or pinching someone.) 3. Consequence – what happens immediately following the behavior. (examples: the teacher pointing at a schedule for the day, a parent redirecting the child to the task, ignoring the behavior. ABA works to decrease inappropriate behaviors, (like hitting, or spinning) by either changing the antecedent to prevent the behavior from happening in the first place or by changing the consequence to prevent the behavior from happening again in the future. ABA also works to increase appropriate behaviors (like using language to request items, and following adult direction) by changing the antecedent to create an opportunity for the appropriate behavior to occur or by changing the consequence to make a child more likely to elicit a behavior again. A (Antecedent) The teacher asks the child to clean up their snack. B (Behavior) The child sits still and says “home, home, home” A lawn mower begins The child stands up to make noise in a and runs towards a neighboring yard. closet door. 119 C (Consequence) The teacher points at a schedule to show the child that it is clean up time. Parent takes the child by the elbow and guides them back to the dinner table. ¿Que es Análisis Conductual Aplicado (ABA)? ABA se refiere a un enfoque sistemático del diagnóstico y evaluación de la conducta, y a la aplicación de intervenciones que alteran la conducta. Es usado como el principio básico que guía muchos de los métodos de enseñanza para niños con autismo y también en torno a la base de los Servicios de Rehabilitación de Salud Conductual (englobante) que están disponibles para niños en Pennsylvania. Básicamente, ABA observa todo el comportamiento (social, académico, adaptativo, físico, etc.) y lo separa en tres partes básicas. 1. Antecedente – lo que pasó inmediatamente antes de la conducta (puede ser una orden, un cambio ambiental, o una acción por otra persona) 2. Conducta – exactamente lo que la persona hace; esto es medible y tangible. (ejemplos: decir la palabra “casa” más de 3 veces seguidas, pararse y caminar hacia una puerta, escribir en forma ilegible en una hoja de trabajo, o pellizcar a alguien). 3. Consecuencia – lo que pasa inmediatamente después de la conducta. (ejemplos: el profesor apuntando a un horario para el día, un apoderado redirigiendo al niño a la tarea, ignorar la conducta. ABA trabaja para disminuir las conductas inapropiadas (como golpear, o girar) ya sea cambiando el antecedente para prevenir que llegue a ocurrir la conducta, o cambiando la consecuencia para prevenir que la conducta se repita en el futuro. ABA también trabaja para aumentar las conductas apropiadas (tales como usar lenguaje para solicitar cosas, y seguir instrucciones de adultos) al cambiar el antecedente para crear una oportunidad para que ocurra una conducta apropiada o cambiando la consecuencia para lograr que un niño sea más propenso a realizar una conducta nuevamente. A (Antecedente) El profesor solicita al niño que limpie los restos de su merienda. B (Conducta) El niño permanece sentado quieto y dice “casa, casa, casa” Una máquina de cortar pasto comienza a hacer ruido en un patio vecino. El niño se para y corre hacia una puerta de clóset. 120 C (Consecuencia) El profesor apunta a un horario para mostrar al niño que es hora de hacer las limpieza. El padre toma al niño del brazo y lo guía de vuelta a la mesa del comedor. Frequently Asked Questions Regarding Verbal Behavior By Mary Barbera, RN, MSN, BCBA As a lead consultant for the Pennsylvania Verbal Behavior Project as well as through my private practice, I have found there is a need for some basic information about Verbal Behavior programming. In a question and answer format, I will attempt to cover basic information for parents and professionals. What is Verbal Behavior programming? Verbal Behavior programming is guided by the principles of Applied Behavior Analysis (ABA). In addition to using ABA principles, a Verbal Behavior (VB) practitioner also incorporates BF Skinner’s Analysis of Verbal Behavior. In 1957, BF Skinner published an important book entitled, Verbal Behavior. Skinner described language as a behavior and illustrated how language could be taught using the principles of operant conditioning. He also expanded the definition of verbal behavior to include any behavior mediated by a listener. A child using sign language to make a request, saying a word to label an item, or having a tantrum because he didn’t get his way are all considered Verbal Behavior according to Skinner’s Analysis. Unfortunately Skinner’s book was largely ignored for decades until Dr. Jack Michael and his students, Mark Sundberg and James Partington began to apply it with great success many years later. What is the ABLLS and how does it relate to Verbal Behavior programming? The ABLLS is an acronym for a book entitled, Assessment of Basic Language and Learning Skills. It was written by Drs. Mark Sundberg and James Partington and published in 1998. This book is an assessment, curriculum guide, and skills tracking system for children with autism or other developmental disabilities. VB practitioners utilize the ABLLS to assess a child’s level in 25 different domains. A parent and/or a teacher who is very familiar with the child can complete this assessment. The ABLLS can be completed every 3 to 6 months after the initial assessment serving as an excellent tracking system of the child’s progress. Also in 1998, Drs. Sundberg and Partington published Teaching Language to Children with Autism and Other Developmental Disabilities, which gives an excellent overview of the VB terminology and techniques. These books, based on Skinner’s analysis of Verbal Behavior, finally brought VB techniques into programs to educate children with autism. How does a Verbal Behavior model differ from a Lovaas or discrete trial model? A traditional ABA model such as the one pioneered by Dr. Ivaar Lovaas stresses compliance training, imitation skills and building receptive language for young, non-vocal early learners. The VB model, on the other hand, looks first at what the child wants and then teaches the child how to request (in VB terms, how to mand). Initially that may involve only the child reaching for the item to indicate interest. The child quickly learns that if they use “verbal behavior” or reaching in this case, to indicate interest in something, they get the item. Many VB consultants also recommend the use of sign language for most non-vocal early learners while Lovaas consultants rarely recommend signing as a first step. Another key difference is that VB is much more child-led. Also, early skills, such as manding, are usually taught away from a table and in the natural environment as much as possible. Both Lovaas programs and VB programs are based on the principles of ABA so there are many similarities as well as a few key differences. 121 I keep hearing VB terms like manding, tacting, and intraverbals. My child can say 10 words, how does that relate to the VB model? While most traditional speech therapists and ABA practitioners break language into receptive and expressive categories, BF Skinner and later Drs. Sundberg and Partington broke language down even further. They realized that children with severe language impairments did not follow the normal developmental sequence for acquiring language. Furthermore, they realized that many children with autism had very scattered skills. One child with autism may be able to verbally label (in VB terms, tact) 100 items. That same child, who may be able to say “cookie” when presented with a picture of a cookie, could not ask for (or mand) for cookie when she wanted one. That child could also not say the word cookie or even point to a cookie if you said, “you eat a _______”. This fillin-the-blank is an intraverbal in VB terminology. The child could also not say “cookie” if you said, “say cookie”. So his verbal imitation skills were also very poor. This child’s profile could be exactly opposite from the next child’s ABLLS. Getting back to your child who says 10 words, utilizing the VB model and the ABLLS, you would have to describe the 10 words your child can verbally say. Can he make one-word requests or label items? Can he complete fill-inthe -blanks or can he imitate words or phrases? These are all-important skills and need to be assessed and programmed for differently. How can I learn more about Verbal Behavior programming? My new book, The Verbal Behavior Approach: How to teach children with autism and related disorders gives an in-depth overview of verbal behavior programming. For more information, and a list of web sites and resources check my web site: www.vbapproach.com. 122 Preguntas Frecuentes Respecto de Comportamiento Verbal Por Mary Barbera, RN, MSN, BCBA Como consultora principal del Proyecto de Comportamiento Verbal de Pennsylvania así como en mi consulta privada, he encontrado que hay una necesidad de información básica respecto de programación de Comportamiento Verbal. En formato de pregunta y respuesta, intentaré cubrir la información básica para apoderados y profesionales. ¿Qué es la programación de Comportamiento Verbal? La programación de Comportamiento Verbal está guiada por los principios de Análisis de Comportamiento Aplicado(ABA). Además de usar los principios ABA, un practicante de Comportamiento Verbal (VB) también incorpora el Análisis de Comportamiento Verbal de BF Skinner. En 1957, BF Skinner publicó un importante libro titulado, “Verbal Behavior” (Comportamiento Verbal). Skinner describió el lenguaje como un comportamiento e ilustró como el lenguaje puede ser enseñado usando los principios de condicionamiento operante. También amplió la definición de comportamiento verbal para incluir cualquier comportamiento mediado por un auditor. Un niño usando lenguaje de señas para hacer una solicitud, diciendo una palabra para identificar un objeto, o tener un berrinche porque no logró lo que quería son todos considerados Comportamiento Verbal según el análisis de Skinner. Desafortunadamente, el libro de Skinner fue en gran medida ignorado por décadas, hasta que el Dr. Jack Michael y sus estudiantes, Mark Sundberg y James Partington comenzaron a aplicarlo con gran éxito muchos años después. ¿Que es ABLLS y como se relaciona con la programación de Comportamiento Verbal? ABLLS es una sigla para un libro titulado, “Assessment of Basic Language and Learning Skills” (Evaluación de las Habilidades Básicas de Lenguaje y Aprendizaje) . Fue escrito por los doctores Mark Sundberg y James Partington, y publicado en 1998. Este libro es una evaluación, guía curricular, y sistema de monitoreo de habilidades para niños con autismo u otras discapacidades del desarrollo. Practicantes VB usan el ABLLS para evaluar el nivel de un niño en 25 dominios diferentes. Un padre y / o profesor que está muy familiarizado con el niño puede completar esta evaluación. La ABLLS puede ser completada cade 3 a 6 meses luego de la evaluación inicial, y sirve como un excelente sistema de monitoreo del progreso del niño. También en 1998, los doctores Sundberg y Partington publicaron “Teaching Language to Children with Autism and Other Developmental Disabilities”, que entrega una excelentevisión general de la terminología y técnicas VB. Estos libros, basados en el análisis de Skinner del Comportamiento Verbal, finalmente lograron incluir técnicas VB en programas para educar a niños con autismo. ¿Como difiere el modelo de Comportamiento Verbal de un modelo Lovaas o de ensayo discreto? Un modelo ABA tradicional como el iniciado por el Dr Ivaar Lovaas enfatiza entrenamiento para el cumplimiento, habilidades de imitación y la construcción de lenguaje receptivo para alumnos pequeños, no vocales. El modelo VB, por otro lado, mira primero aquello que el niño desea y luego le enseña a pedirlo (en términos de VB). Inicialmente esto puede involucrar sólo que el niño estire la mano para indicar interés. El niño rápidamente aprende que si usa “comportamiento verbal” o estirar la mano en este caso, para indicar interés en algo, obtendrá ese algo. Muchos consultores VB también recomiendan el uso de lenguaje de señas para la mayoría de los alumnos pequeños no vocales mientras que consultores Lovaas rara vez recomiendan el uso de señas como un primer paso. Otra diferencia clave es que VB es mucho más guiado por el niño. Además, habilidades tempranas, tales como “manding”, normalmente son enseñadas alejado de una mesa y en el ambiente natural en la medida que sea posible. Tanto los programas Lovaas como los VB se basan en los principios de ABA así es que hay muchas similitudes además de algunas diferencias claves. 123 ¿Escucho continuamente términos VB como “manding”, “tacting”, y “intraverbals”. Mi hijo puede decir 10 palabras, ¿Como se relaciona eso con el modelo VB? Mientras que la mayoría de los terapeutas de lenguaje tradicionales y practicantes ABA desglosan el lenguaje en categorías expresiva y receptiva, BF Skinner y luego los doctores Sundberg y Partington desglosaron el lenguaje aún más. Ellos observaron que niños con discapacidades severas de lenguaje no seguían la secuencia normal de desarrollo para adquirir lenguaje. Más aún, ellos notaron que muchos niños con autismo tenían habilidades muy dispersas. Un niño con autismo podría ser capaz de nombrar verbalmente (en términos VB, “tact”) 100 cosas. Ese mismo niño, que puede ser capaz de decir “galleta” cuando se le presenta una fotografía de una galleta, no puede pedir (o “mand”) una galleta cuando quiere una. Ese niño tampoco podía decir la palabra galleta, ni siquiera apuntar a una galleta si se le decía “tu comes una _______”. Este completar la oración es un “intraverbal” en terminología VB. El niño tampoco podía decir “galleta” si uno le decía “di galleta”. Por ello sus habilidades de imitación verbal también fueron muy pobres. El perfil de este niño podría ser exactamente opuesto al del ABLLS de otro niño. Volviendo a su hijo que puede decir 10 palabras, utilizando el modelo VB y el ABLLS, Ud. tendría que describir las 10 palabras que su hijo puede decir verbalmente. ¿Puede hacer solicitudes de una palabra? ¿Puede completar oraciones o puede imitar palabras o frases? Estas son habilidades cruciales y se necesita evaluarlas y programarlas en forma diferente. ¿Cómo puedo aprender más respecto de programación de Comportamiento Verbal? Mi nuevo libro, “The Verbal Behavior Approach: How to teach children with autism and related disorders” (“El Enfoque de Comportamiento Verbal: Cómo enseñar a los niños con autismo y otros problemas similares”) entrega una visión global en profundidad de la programación de comportamiento verbal. Para mayor información, y una lista de sitios y recursos Web, visite mi sitio web: www.vbapproach.com. 124