The ACCESS project: Building Community-Based Autism Identification Teams

December 15, 2015

The Oregon Center for Children and Youth with Special Health Needs (OCCYSHN) at Oregon Health & Science University (OHSU) is working to support 8 community-based medical-educational teams to evaluate young children with possible autism spectrum disorder (ASD). This work has been funded by a MCHB state autism implementation grant. Each team includes a pediatrician, a mental health provider (either as regular team member or consultant), educational staff (an autism specialist, a speech pathologist and other educational staff as needed), and a parent partner. Currently each team evaluates 1-2 children per month, conducts a team conference to discuss diagnosis and an initial care plan including eligibility for educational autism services, and a family conference to review the results with the family. Our project's goal is to establish a single, valid and timely process in the local community that determines both educational eligibility for autism services and a medical diagnosis for children up to 5 years of age.

Background: In Oregon, children may receive a medical diagnosis of autism but not educational eligibility for ASD services and vice versa. This can be very confusing for families. The process for evaluation differs in medical vs. educational settings. For example, there is a prescribed timeline to complete the evaluation in education and long wait lists for a medically-based team evaluation (5-6 months or longer even for younger children). Medical teams use DSM criteria (Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association) and educational teams do not. In addition, some agencies do not accept educational eligibility as a diagnosis, e.g., Developmental Disability services and Social Security Administration.

There also is a significant cost for center-based evaluations to Coordinated Care Organizations (CCO's), health plans and families. Families often need to travel some distance from their home community to obtain a center-based medical evaluation for autism from an experienced team. Parents have time out of work and additional travels costs which might include an overnight stay, and may have out-of-pocket costs for the evaluation. Families also may not get the information they need. Center-based staff may not be well informed as to the services available in the family's home community.

Our Autism Identification Teams (AITs): Medical and educational team members typically evaluate the child independently. The pediatrician obtains the medical/developmental history, completes the DSM family interview on ASD for their child, administers the STAT (Screening Test for Autism and Young Children) and does a physical exam with the child. The STAT is a 20-30 minute structured play observation that provides the structure for the MD to make informed behavioral observations.
Educational team members provide the same type of evaluation they have done in the past as part of eligibility evaluation for educational services for children with possible ASD. In addition, they attend the team meeting and the family conference with the pediatrician and Parent Partner. The mental health provider reviews other possible mental health diagnoses. Their input can be critically important especially for older preschool age children. The Parent Partner contacts families before the evaluation with the pediatrician, is present during the team and family conferences and calls families one month after the conference. They also provide non-medical resources specific for the community and on-going support to the family as needed.

The OCCYSHN at OHSU provides on-going support and technical assistance to the teams including an initial 2 day training work shop, site visits, regular webinars, materials and resources, and an online discussion group.

Experience to Date: Four teams began to function in the first year of the project and four more in the second year. We are now in the third year of three years of funding. Each team began by evaluating 1-2 children per month during at least the first year of the project. Now teams are encouraged to address the capacity needs of their community by increasing the number of children evaluated per month. To date the teams have evaluated more than 70 children, approximately 2/3 of them have had an ASD diagnosis and the other 1/3 have had other developmental problems. Team members have disagreed approximately 10% of the time. These families have been offered a medically-based team evaluation by one of 2 highly experienced teams at OHSU. They have been able to jump to the top of the waiting list for these evaluations which function as second opinions and also training opportunities for the local teams.

Team members have been highly satisfied with their participation. Pediatricians have commented they view their participation as an enhancement of their pediatric practice. Families also have been pleased with the process. Additional information will be available when our project's formal evaluation plan is completed in Spring 2016. Visit the OCCYSHN website for more information on the project.