Saturday, April 04, 2009

Don't Count On It....

In a lament for the lack of support for autistic adults, a parent writes,
Question: What coming social expenditure will cost more than a third of this year's budget for the Department of Health and Human Services and be larger than the entire current budget of the Energy Department?

Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually in current, non-inflation-adjusted dollars by the end of that period. The number of autistic children expected to need extensive adult services by 2023 - more than 380,000 people - is roughly equal to the population of Minneapolis.
It may, if the nation feels that it has the money and makes spending on disabled adults a priority. But I wouldn't count on that - I would be structuring a special needs trust and trying to provide for my own child, on the expectation that society will not.
I understand that no one wants to look at a child and imagine the clunky, in-your-face adult he or she will become or think about the stares he or she will induce. When I look at my pudgy 22-year-old son, Randy, still sweet-faced but so obviously disabled, I cannot locate the blond cherub he used to be, gripping his stuffed brown bear.
This perhaps explains in part the difference in the manner in which society treats developmental disability in childhood and adulthood. In childhood, there's lots of spending and support, individualized education plans, the sky's the limit. In adulthood there are... group homes, and perhaps a sheltered job. And arguably the former is an outgrowth of guilt, overcompensation for the early 20th century's approach of warehousing and writing off developmentally disabled kids (as well as many with physical disabilities).
At expected rates, we will need to find an additional million caregivers, people who must have the right personal qualities to work with autistic individuals but who are willing and able to work for low wages. This is no small challenge. We not only must train people but also show that we value this work by paying them better.
And it's not just autistic adults. The needs of other developmentally disabled people must also be addressed.

The status quo for adults has emerged within the context of a society that has the funding to do more, and has chosen to put that money elsewhere. I suspect that over time the focus may be on how to provide disabled minors with less, and possibly also applying means testing to benefits, as opposed to providing disabled adults with more. I say this not to be mean, or to begrudge the developmentally disabled of funding and support. But if the future turns out to be as I expect, parents will need to be more proactive in planning out their own kids' futures, as the state is likely to become an even less acceptable proxy.


  1. "In childhood, there's lots of spending and support, individualized education plans, the sky's the limit"


    Is this in Michigan? Maybe I need to move back.

    Of course the level of spending and care is much better for children than adults, but my experience has been that parents do not get ANY help they cannot wring out of schools and government at lawsuitpoint.

  2. Hi Mythago, in Michigan it may be a bit different, because we have the sec 1415(a)/(b)/(c) federal waiver programs which provide for additional benefit flexibility. Michigan also has a "Person-Centered Planning" mandate, so if the case worker puts it in the PCP, that becomes a legal obligation for the county. Some families have been able to get horseback lessons paid for under this program. As you point out, the level of benefits is often greater for those who know what they need to do to get them. And it just so happens that the people who know what they are entitled to are generally those with the resources to pay for them.

    My thought is, if we cannot afford to do for all, what kind of process should determine who "gets" and who "doesn't get"? As the American public perceives a decline in resources, these kinds of arguments are going to surface more frequently and become more heated. This subject might be slightly less heated than a debate over when Medicare should stop paying $350,000 a year to keep a 95 year old alive.

    These discussions aren't so much an issue when the society can afford to pay for it. But at some point, we can't. We can argue about whether we have reached that point, but some day, we will. What about the ESRD entitlement program which costs 60,000 annually per beneficiary, and is also not means-tested? There is no federal chemo program, but people die because they can't afford cancer treatment. Do we continue to offer to some and deny to others, because they got there first? What about organ transplants? People die because they are waiting for or cannot afford organ transplants, but we don't have a federally mandated organ transplant benefit.

    Really, there is a finite pie. I have no illusions that *I* am going to advocate for those programs which would benefit me and my family personally, nor would I even try to argue that I wasn't doing that. And I would not begrudge anyone else for doing the same thing.


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