In The Politics of Autism, I write:
When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
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.From the article:
This study has important implications for delivery of services to adults with ASD broadly. Staff, families, and adults with ASD identified training as a top priority. Areas of training needs identified are largely reflective of evolving research on adults with ASD. Supporting individuals across the spectrum of needs was a recurrent theme in the focus groups and reflects the existing literature base on the vastly different service needs between individuals with ASD, especially among those with and without ID (McCarthy et al., 2010; O’Brien and Pearson, 2004).
A powerful question that came up in focus groups with families and with participants was: what will happen to an adult with ASD after their parent, caregiver, guardian, or other essential family member passes away? According to the 2011 PA Autism Needs Assessment, 56% of parents and caregivers had no long-term plans for their child (of all ages) after they are no longer able to care for them. This statistic is startling given that of the adults with ASD sampled, about 77% live at home with their family or caregiver (Bureau of Autism Services, Pennsylvania Department of Human Services, 2011b). Another report replicated these results, finding that about 80% of adults with ASD have been reported to be living with their parent/caregiver and have no long-term plans or options for independent living or community integration (Reagor, 2010). Engaging in the long-term planning process is invaluable to avoid crises when adverse life events occur, such as the death of a caregiver.