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.