So What's a Grown Autistic To Do?: When Support is Inadequate

Disclaimers: if it isn't on my blogroll, chances are I don't read it. The exceptions to that rule are that I do (duh) read Age of Autism, Huffington Post,  and occasionally Autism's Gadfly, Autism's Bitch, Doherty's blog and ChildHealthSafety (to the degree I can stand), and Ginger Taylor's; you know when I'm out hunting for stuff to write about. That's it, people. I have no doubt there are all sorts of places out there in the interwebz that I am blissfully ignorant of.

I've been fortunate to make all sorts of friends this past year, from parents like me, with children on the spectrum who want some joyful noises made rather than all the woe-is-me tales so many parents insist on to parents who blame vaccines for autism, to adults on the spectrum. I am glad for all these friends. Adults on the spectrum who have lived through experiences my children may have to face offer me perspectives I would not otherwise have had.

One of my friends, an adult on the spectrum, struggles (I am sure all my friends struggle in some fashion; some face more serious challenges than others): struggles with employment issues, with insufficient financial means, with insufficient insurance and medication coverage.

Too much time, this friend argues, is spent on hot air and no real action to improve the lives of autistic adults. What about job training? What about support while in an employment situation? Autistic adults have very real needs for some extra assistance in navigating the hurdles involved in obtaining and keeping employment. What about the frustration in being forced to do a job you don't want to do, in having dreams you cannot realize?

Where are the parents, where are the adults on the spectrum, who agitate for better support? Who work to implement programs to help those who are autistic and sufficiently high functioning that indepedence is possible? Why should they be reduced to menial jobs when they want more, could get more, if there was a support system in place for them?

Each state, each county, each city is different in the services they provide to the disabled and disadvantaged, and often the support is hamstrung by a bureaucracy designed, it seems, to thwart those who most need it. SSI is woefully inadequate to live on, and if someone helps you,  you can lose some of that SSI money. Medicaid is inadequate. Even with the things covered, it's still hard to find providers who take it. Medications? My son needed a month's worth of Lovenox injections because of his blood clotting disorder (which by the way was horrendously expensive, over a 100 dollars a day), and Medicaid denied it. Thankfully, he was still covered under our insurance as well, and we were able to over ride that insurance company's rejection and get him the meds he needed. What will we do if he ages out of our insurance completely? How bad will it be when we really have nothing but medicaid for him?

What about job training for the disabled? At 14, the school system is supposed to transitition those in special education to vocational training. That's all well and good until 21. What then? Not every state has adequate MHMR type programs to continue the support, and if you're sufficiently high functioning that you didn't need special education and didn't get the vocational training because you could do the academic work, but you can't navigate the social environment, what the heck do you do then?

What if you reach adulthood, you still need significant help, but your family bails on you, removes the financial support you need, the emotional support you need, and the assistance in getting the paperwork filled out and navigating the MHMR/equivalent? What do you do then?

Where is the safety net for these people?

We already know (or should) that the safety net for the moderately disabled is almost nonexistent. Those who are severely disabled and who need 24 hour care, I think, at least where I live, can be placed in residential settings (state-supported living facilities) with much less difficulty than those with moderate or milder disabilities can get services. It doesn't mean what the severely disabled have is perfect or without its difficulties, but it's there and  a parent with an adult child who needs that kind of setting can get it.

If what your adult child needs is a group home, at least where I live, it's not that easy, not that quick, and placement into a group home can take years. Many of the facilities also have sheltered workshops, but it's not something you can just send your adult child to; these sheltered workshops run on medicaid and pay your adult child a wage based either on the hours or the pieces produced. It's far from perfect. It's far from adequate, and my bright boy isn't going anywhere near it if I can help it. We're lucky; we have a good day program run by the city for the disabled and he attends that. He's happy there, has lots of friends, and even a girlfriend. As long as the city has this and he's happy with it, then I can avoid dealing directly wih trying to find a place where he could work in a sheltered workshop.

My adult friend who raised the issue with me is right; most of the jobs for the disabled are things like janatorial positions (my bright boy can't handle the label reading, though, and I would not feel safe with him around a bunch of commercial cleaning products; that's asking for disaster), either at fast food places, or cleaning offices, or the like.

My friend's argument, and a really good one, is that more parents ought to be fighting hard to make sure there are adequate programs in place for autistic adults so that they can pursue their dreams, so that their medical and medication needs are covered, so that they don't worry about having to be homeless or hungry. So that their lives are not lives of despair.

If you know of services in your area that provide these kinds of assistance for autistic adults and other disabled individuals, please link here.

If you know of a national website that provides emergency funds to the disabled who are in need, please link it here.

If you can't find any (and while I'm running into some things in local areas, I'm not hitting on national, easily accessible websites that offer actual direct assistance), please link here.

If you've got ideas on this, general kvetches, or other information relating to this, please comment.

It's time to change the discussion some, to add this very real problem into what we are focusing on.


MySocratesNote said...

Very good post, Kim.

I often wonder what will happen to my son when he becomes an adult. Hell, he's only 8 right now and he is already frighteningly strong. When he goes into one of his rages, I'm the only person who can calm him down. I have to hold him down to prevent him from hurting himself or hurting anyone else. What will I do when he grows too strong for me?

What will he do when I die? My wife stays home with him now, but if I die, she will have to go back into nursing. We have yet to find a place that can help him, or even control him. Now, to be fair, I must say that Texas MHMR is a far sight better than MHMR services in some if the states I've lived in.

This is a very real and serious problem with services for disabled people in this country right now. I know how difficult it is for my son, so I can imagine how difficult it must be for autistic adults who need these services. And whether you agree with there being more autistics or not, there will soon be a very serious overflow of children becoming adults who will require these services.

I'm disappointed with the direction of Health Care reform. I haven't seen anything in all I've read that really addresses these issues. And I certainly don't think that drugging these autistic individuals into oblivion is going to be very effective, do you? I'm disappointed in the direction Obama is taking us as a country (I voted for him, and I still think he's a damned sight better than McCain).

In case you didn't know, this is Craig, btw.

NightStorm The Aspiewolf said...

ASAN needs to get on ball and start helping us advocates out.

This is a very real and serious problem with services for disabled people in this country right now. I know how difficult it is for my son, so I can imagine how difficult it must be for autistic adults who need these services.

It's complicated Craig. The Goldilocks Rebuttal is more than just satire. It's real. Either you're not disabled enough or too disabled for these services. I am scared of FCBoDD will look at my application and say "Sucks to be you babycakes. You're too high fuctioning"
Or the autistics that are successful will give me the evil eye for relying on the government.

Sometimes we have to be whores to get by you know? (yes that is a metaphore)

Medication is getting hairy and not all of us can afford schooling at this point. It's just. Crazy and unfair and neither side is trying to solve this.


Corina Becker said...

In an interview some years back, I was asked whether I considered myself lucky. I floundered to answer because there was no frame of reference. Lucky compared to what? and how? In that I'm considered "high-functioning"? That would belittle my fellow autistics, and also dismisses that just because I'm "high-functioning" does not mean that I'm "lucky".

It is maybe harder for a "high-functioning" autistic to get supports, I would suggest in any country, because we "don't look disabled". Because we might be able to mimic social skills, have at least the barest of vocal skills (which doesn't necessarily mean that one is able to functionally communicate vocally), and can put on a good front.

I'm working with a Dual Diagnosis team in my city to get my supports set up. I suppose I'm lucky in that my parents are using what loopholes they can find to keep me on their insurance and to put away money for me.

My safety net of sorts is the Ontario Disability Support Program
, basically social assisted financial and employment services to help out disabled people who want to work. It's a safety net, but not something that is suitable for long-term support. It is designed to encourage people to get back into jobs.

Last year, with a job and ODSP, I was still living under the poverty level, and had the humbling experience of receiving a Christmas food hamper from a food drive.

a couple of facts (figures are rough estimates, as coverage has increased about 2% since I was approved for supports)

- ODSP supports get taken away if someone has over $6,000 in assets and in bank accounts. Loophole: funds in a Registered Disability Savings Plan do not count.

- ODSP covers about $500 in rent.

- the wait list for social assisted housing/income-geared rent housing is about 2 years in my town. 7 years in Toronto. Priority is given to those approved as homeless or as being in an abusive situation.

- if working, ODSP Income supports removes 50% of one's earnings from one's support cheque.

- ODSP does not support tuition. One is legible for financial aid through the schools, but ODSP will only not take off earnings if one is working and meeting course load requirements at the same time.

As you've said, Kim, a lot of the jobs given to disabled people are entry-level jobs. A lot of the employment agencies also don't know how to place a person with particular skills and knowledge, since they're used to getting people those level jobs.

The agencies I've worked with were pretty much baffled as to how to place an autistic with a B.A. in a job where I wouldn't burn out. They were good people, they just weren't used to working with people like me.

It's not a completely bad system, like, it'll cover the expenses of my CPAP. However, it's not perfectly set up and is more of a safety net that can all too easily become a poverty trap.

Clay said...

Being cold, homeless and hungry was always my greatest fear. Having a wife and 2 children greatly multiplied that fear. I did really desperate things, like taking a "job" hanging plastic bags with some kind of advertisement on people's doors. Was assigned a route, didn't do it right, that job lasted only one day.

I know despair, it's the wolf at the door. A pack of wolves circling the house. Utter fear of going out, and knowing you CAN'T just stay in. No help anywhere, it could trigger a psychotic break in a saint. WE NEED HELP, DAMMIT!

Marjorie said...

It's frightening isn't it! I'm planning on setting up a group home for my son to live in. The home will be owned by a trust. I am also planning on setting up a community center because there aren't enough now and I doubt anything will be available in the future that doesn't have huge waiting lists. If we have to work years extra to pay for it we will.

MySocratesNote said...

NightStorm, I couldn't agree with you more. I'm so frustrated that you and children like my son, hell, ANYONE, who has to put up with the crap our government puts us through to get the help that we need. If I can spare something to help you with meds, I'll do what I can.

Corina, I'm glad you are able to receive services from the Canadian government, though woefully inadequate as it is. I, too, know the humbling feeling of receiving food from a food hamper. Don't get me wrong; I really did appreciate it, but it is slightly humiliating that I make as much money as I do, but I can't keep my head above water.

Clay, your words chill me the most. I've had nightmares about what would happen to my son after I die, and your words echo one of those nightmares. I also couldn't agree with you more; We need help!

Setec Astronomy said...
This comment has been removed by a blog administrator.
kathleen said...

Just from talking to people I have heard that Vermont, and Portland Oregon are very good at providing services.
My sister lives in upstate N.Y., where she works with developmentally disabled adults-she has been fighting the good fight to design and implement programs for people. I can not tell you how many road blocks she has encountered.Simply because she wants to change things-wants programs to actually help with their specific needs. She has found that the word "disability, when it comes to funding, just means "disabled". No specifics-so the programs are of a one size fits all nature-and that just isn't good enough.
I hope this makes sense-I've been shoveling snow for what feels like a lifetime today-and find my self a little addled. :)