What Happens To Disabled Adults?

What am I working on?

Well, after writing a couple of pieces for Edutopia this winter, I took some time off to figure out what to do with Ian when he graduates from high school in two months and to recharge. Now, that I have a temporary, short term, tentative plan for Ian, and have started all the annoying government paperwork for adults with disabilities, I’m ready to put my writing hat back on.

I dusted off a book proposal that I started last fall; I’m nearly finished with a 4,000 word book proposal and another 4,000 word sample chapter. Tips from a book agent newsletter have helped me learn to sell myself. I’m terrible at selling myself, so I need these tips.

I have enough research to structure the book proposal, but I would like a little more information for one question in the book: “What happens to disabled people and families after they leave public education?” Now, that’s a really big question, right? I am a parent of a young adult with a disability and have written a lot about disability issues. You would think I would know that answer, right? I do not.

I started making phone calls. Normally, I don’t start interviews until I’ve got a deal locked down with an editor, but this question is plaguing me. I want to know. Even if I can’t use this information in a book (because nobody wants it, wah!), I could probably sell it to a magazine, so this isn’t a total waste of time.

Yesterday, I talked with a director of Jersey-based advocacy and support group. It’s a well-known group that fielded 11,000 questions from parents last year. She was hesitant to answer my questions, because “she likes to be positive,” but she gave me a broad overview of “the system.”

After a child with Downs Syndrome or Nonverbal autism turns 21, their parents have to gather various bundles of benefits from half a dozen state and federal agencies. It’s an Easter egg hunt for state services! Fun! Not really. At the end of the hunt, they have to hand their basket over to a coordinator, who is the gatekeeper for the money.

Want to use some of that money to pay for swim lesson for disabled people at the YMCA? Okay, first you have to go to a government coordinator. She’ll see if the YMCA is on the approved list. And then she cuts the check.

Want to use some of that money to pay for a special housing system? Well, again you have to go back to your coordinator, get approval, fill out paperwork, and then get your kid in the housing.

What happens if a service — art classes at the town library — isn’t on the approved list? No money. What happens if there are not enough agencies and services located in your area? No money. Sometimes a parent might have a full basket of Easter eggs and have no place to spend it.

As she described this process to me, I said this sounds pretty horrible. How can a parent work, if they’re spending all their time trying to find things to keep their adult-child busy and getting approval? It sounds like a full time job, I said. She nervously laughed and said it was.

It’s very important to have those people “in the system,” she said, because the state will need to step in, if the parents die. If these individuals aren’t in the system, the state doesn’t know about them. Some older parents doesn’t even know how important it is to keep all the paperwork in files, so there is no evidence that the adult with Downs Syndrome actually has Downs syndrome.

What happens to the undocumented adults with disabilities, when their parents die? She nervously laughed again and said, “I don’t know.”

I don’t like not knowing things, so after I finish writing up what I do know, then I’m going to start making phone calls.

Picture: The Social Security Administration provided me with a return letter envelope to enclose 60-70 pages worth of documents.