CATCH Team (Childhood Autism Team CHeck) GUIDEBOOK

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1 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 or at CCIU, brendae@cciu.org. 0

2 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? page 19 X. WHAT HAPPENS AFTER THE ASSESSMENT?... page 20 XI. FEEDBACK SESSION page 21 APPENDIX page 22 1

3 ~ 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 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 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

4 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

5 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

6 ~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

7 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

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9 ~ 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 To access the full Policy statement see the following website: Site: 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 M- CHAT 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

10 NOTES: 9

11 ~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

12 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

13 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

14 ~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

15 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

16 ~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

17 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

18 ~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

19 ~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

20 ~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: 19

21 ~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