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.
Maura Sullivan is with ARC, an advocacy group for folks with intellectual and developmental disabilities. She says the situation is dire, a real crisis. "I would say it's gone really beyond crisis and we're looking at a real systemic failure for adults with autism and intellectual and developmental disabilities," Sullivan said.
The ARC estimates there are more than 5,000 in Massachusetts who are not getting all of the help they need. The state tells us, about 70% of those who turned 22 in the last three years are getting some services.
Maura understands the challenges, she is not only an advocate with ARC, she also has two sons with autism. Maura says her son is 22 and has profound autism. She wants him to have a life with dignity and independence where he can go to the bathroom and shower by himself. "These are the little things that I don't know how much other people recognize when you have a child with a more profound disability," Sullivan said.
Autism: Aging Out travels across Pennsylvania to show the successes and challenges individuals and families face when a person with Autism Spectrum Disorder (ASD) turns 21 and navigates new pathways to joining the workforce; living situations; health and wellness; and social engagement. Among the organizations featured in the documentary: Autism Urban Connections Inc., Community Integrated Services, Autism Runs, and Achieva. To see related videos and to explore a list of resources, visit https://www.wqed.org/autism.