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Sunday, December 24, 2023

Caregivers of Autistic Adults Face Red Tape

 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.
Samara M. Wolpe, Amanda R. Johnson, Sunny Kim have an article at The Journal of Autism and Developmental Disorders titled "Navigating the Transition to Adulthood: Insights from Caregivers of Autistic Individuals." They conducted ten semi-structured interviews with caregivers of autistic young adults focused on transition to adulthood.
The difficulty of locating appropriate services for their child was a frequently expressed sentiment among participants. Many participants expressed the sentiment that, even when they found a seemingly suitable service that they thought would benefit their child, there was so much bureaucratic red tape that they were unable to obtain the service in time to use it and spent much of their free time fighting with service coordinators or attempting to get through to service professionals. One parent best summarized the experiences of wading through the restrictions put in place to limit access to services:
It's a constant battle with Regional Center to get anything that you know benefits your kid. It’s so hard because they control everything, so you have to be polite… it's this constant churning of emotion because you want more for your kid and then you also understand why it's hard to get it, so there's this constant feeling like you're always in battle.” (Natalie)
Additionally, parents expressed frustration with navigating the Regional Center’s vendoring system. One participant stated:
“It’s so exhausting for the families, and then there's so much red tape… For example, they publish their list of vendors, but it's alphabetized, and for consumers of all age ranges for example, birth to 60 … well that's not helpful! I don’t need to know the name of the vendor. I need to know which vendors offer Adult Services, and what services they offer.” (Natalie)
Even those parents and caregivers who are able to get in touch with Regional Center coordinators and add themselves to the waitlist reported difficulty actually obtaining services. One parent (Liza) explained, “He's still living at home and we're in the process of trying to get him into supportive living, you know, we have an agency that agreed to work with us, but everybody's having a really hard time finding staff now so they're long waiting lists.” Even when services have been identified and the organization has agreed to provide the service, families still recalled waiting inordinate amounts of time to have the promised service come to fruition.