Program experiences of adults with autism, their families, and providers: Findings from a focus group study.
Adults with autism say Medicaid services must boost staff training, offer interest-based community activities, and extend job coaching.
01Research in Context
What this study did
Schertz et al. (2018) ran focus groups with adults on the spectrum, their families, and service staff. They asked what Medicaid autism services should look like.
The team recorded the talks and sorted answers into themes. They wanted a wish list straight from the people who use the system.
What they found
Three needs topped every list: better staff training, community activities built around personal interests, and real help finding and keeping jobs.
Participants said most programs miss these marks. Training is too generic, day programs feel like babysitting, and job coaches vanish after placement.
How this fits with other research
Hedley et al. (2017) scanned fifty employment studies and found most are weak and small. The focus groups echo that review: we still lack strong job-support models.
Gotham et al. (2015) surveyed thousands online and saw the same gaps. The 2018 focus groups narrow the lens to Medicaid, but the shopping list is identical.
Ghanouni et al. (2021) talked to stakeholders about all healthcare, not just autism services. Both studies hear the same complaint: staff need more autism know-how.
Why it matters
If you write transition plans or supervise adult programs, use these three priorities as your checklist. Ask clients what interests they want in the community, not what slot is open. Build extra weeks into job coaching instead of fading at day one. And push for training that covers anxiety, sleep, and GI issues adults often bring up. Small shifts here can widen the whole doorway to adult life.
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02At a glance
03Original abstract
A growing number of individuals with autism spectrum disorder are aging into adulthood. In the United States, Medicaid is the primary payer for services for adults with autism spectrum disorder, yet there are few funded programs that provide dedicated supports to this population. This study examined the experiences of adults with autism spectrum disorder in two Medicaid-funded programs in Pennsylvania through focus groups. Researchers conducted 20 focus groups with a total of 36 adults with autism spectrum disorder, 32 family members, 32 direct care staff, and 20 program administrators. Using thematic analysis, we identified three themes: training needs, community engagement and socialization, and employment. There was a need for additional training to meet the varying needs of program participants including co-occurring diagnoses, sexuality, and long-term planning. Adults with autism spectrum disorder prioritized more individualized community activities based on their interests. Finally, barriers to and strategies for successful employment were discussed. It will be crucial for policy makers to utilize the findings to inform program improvement and development based on the experiences of individuals impacted by these services and systems directly. Additionally, researchers should use the findings from this study to design interventions for adults with autism spectrum disorder as it includes their voices.
Autism : the international journal of research and practice, 2018 · doi:10.1177/1362361316679000