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.
For parents of children with disabilities, this is a deeply personal issue. Many of them, like Bob White and Gail Marsh, work hard to advocate on their children's behalf so that they can get the mental health services they need to lead healthy, happy and productive lives. They both joined Stateside to talk about their struggles and successes with the state's mental health care system and why they are worried about the prospect of changing the system their children rely on.
White is the father of two sons who are on the autism spectrum and he lives in Clarkston, and Marsh is the mother of an adult daughter who has Down Syndrome and she's from Grand Rapids....
"My wife and I are afraid to die," White said while fighting back tears. "Every year, we as parents, we aren't going to be around to advocate on their behalf. To make the trips to Lansing, to go to the meetings. We have to come up with something that's more sustainable so that we have the confidence that when we're not here, that our two guys, Gail's daughter and others like them, are going to be taken care of."
Gail echoed those sentiments. "I said that to the group of 135 persons at the Section 298 work group, I told them that myself and other families that I'm aware of, we have a confession, like Bob, are hoping that our sons and daughters don't live longer than we do because we can't trust that there's a system that's going to take care of them."