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.

13 thoughts on “What Happens To Disabled Adults?

  1. Why don’t you chat up Peter Gerbhardt? He is a nationally recognized adult autism expert and he is somewhere in northern New Jersey (easily googeable I am sure). I heard him speak once and he was very down-to-earth and sharp.


  2. I saw this article, which was depressing but taught me something about an issue I don’t often think about. https://www.pbs.org/newshour/health/happens-developmentally-disabled-parents-age-die

    I know someone who worked for a not for profit that worked on these issues and I remember thinking what a morass of unintended consequences it could be. For example, the treatment in the system of a developmental disability could be entirely different than a adult onset disability, so proper documentation of the disability in childhood mattered. Hopefully, not for Downs, which is always developmental, but, say, for example, stroke, or schizophrenia.


  3. I’ve always disliked the “wait lists” and services that you have a right to but which there is no funding for. I guess people pass unfunded mandates as a politically expedient act, hoping that others will come up with the money or that the money will come later. But for these rights to be real rights they need to have broad based funding.


    1. Ian is theoretically entitled to $800 for camp. But the money only goes to certain camps on a list, and none of those camps are right for him. So, we’ve never used that $800. I jumped over so many hoops to get him qualified for that service and it doesn’t help us.


  4. I think it is hardest for disabled adults who are on the cusp (or may become on the cusp, if their development and the services available align in the right way) of being able to live independently or nearly so. If they might be able to work in a regular workplace. If a weekly visit from a case manager could be enough hands-on help.

    People whose disabilities don’t affect their interactions with people (such as my several friends with severe cerebral palsy) can navigate the system with minimal help; people with severe cognitive or psychiatric disorders need safety and pleasant caregivers plus recreation more than anything else. People like Ian (and their families) experience more challenges in attaining an adult life that fits them right.


    1. Maybe. I’ve seen the school where they put the more disabled kids. They’re bad places. My grey area kid who can survive a regular school has a much better life.


      1. At the school level, no doubt. And that is why the movement towards inclusion has been so important. But at the adult-living level, what I’m trying to say is that it’s harder to craft a support system that works for people who are on the edge between independence and not-independence. You have more entities to deal with, and on top of that the need to make sure that the supports you put in place do not stifle the young adult.


      2. Oh yes. I’m sure that’s true. The do have something called “supportive housing” for those who need minimal help, but I haven’t seen it yet or talked to folks in there yet.


      3. I used to work for an agency that provided supportive housing for adults. It was a good agency with good people and very decent housing, thriving community, but not always the easiest to navigate without some understanding, mostly due to the complexities of the mix of personalities in residence. I was the EA to the President and by design our office was right in the supportive housing building…lots of joy and lots of odd moments like the day one of the residents brought his cat down to have kittens on my coat.

        A lot of that, up here, has been kind of spread out/dismantled into adult group homes, and there it is kind of finding the good ones.


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