The Autism Society Event and Education Recordings Archive

A growing number of individuals with autism spectrum disorder (ASD) are aging into adulthood. In the United States, though Medicaid is the primary payer for services for adults with disabilities, there are few Medicaid-funded programs that are designed to specifically support adults with ASD across the range of their needs. Furthermore, there is minimal literature available on the perspectives of participants in these few programs, their families, and program staff. Pennsylvania’s Bureau of Autism Services (BAS), within the Department of Human Services, was among the first in the US to create Medicaid-funded programs designed to serve adults with ASD: the Adult Autism Waiver (AAW) and the Adult Community Autism Program (ACAP). This study is the result of a qualitative evaluation of these two programs in Pennsylvania. This evaluation utilized focus groups to directly engage program participants, their family members, direct care staff, and program administration.

In addition to sharing the results of the evaluation, this presentation will include a brief background on BAS, AAW, and ACAP. In the United States, Medicaid is the primary payer of long term services and supports (LTSS) for individuals with disabilities. Because Medicaid is administered at the state level, the federal Centers for Medicare and Medicaid Services (CMS) gives states the discretion to develop programs that target specific populations, conditions, and service needs. As of 2016, however, a search of Medicaid programs on CMS’ website yields only thirty state programs nationwide that offer services specifically to adults with autism, which includes the two Pennsylvania programs in this evaluation. BAS commissioned focus groups to learn about the experiences of program participants and stakeholders, and to evaluate the efficacy of both programs in meeting their goal of helping adults with ASD live independently in their communities.

In total, 165 individuals participated in focus groups over two time periods including adults with ASD, family members, program administration, and direct care staff. The information in the 32 focus groups yielded robust findings. Almost all program administration and direct care staff reported that family systems issues impact service delivery for adults with ASD. The majority of adults with ASD sampled were unemployed and topics around employment experiences and service needs to acquire skills was frequently discussed across all groups. Almost all direct care staff identified comorbid mental health diagnoses as a primary challenge in delivering services to adults with ASD. These findings and other results from the focus groups provide useful information in developing programs for adults with ASD in other states, highlight the success of two novel programs for adults with ASD, and illuminate ongoing needs of adults with ASD.

Very little work of this kind has been accomplished to date, especially that engages individuals with ASD, their families and caregivers, and direct support professionals. The work in the presentation will describe experiences and ongoing needs of adults with autism spectrum disorder, their families, and providers in two ASD-specific Medicaid programs and can provide critical insight to other states interested in designing programs for adults with ASD.