Via The Gimp Parade, here’s a Houston Press article discussing the challenges facing young adults with disabilities who are aging out of the pediatric care system. While this really isn’t a new phenomenon, the piece does a good job of explaining the institutional biases that are still the norm in many states. For example, many state Medicaid programs will not provide private duty nursing services after age 21 and will only cover the costs of institutional care. Families are suing states like Texas in efforts to get the services that will keep their sons and daughters in the community and not warehoused in facilities.
The article goes on to describe how some hospitals and clinics serving kids and teens with disabilities are doing more to prepare them for the transition to adult lives of independence and employment. I could think of a few Minnesota-based hospitals that might want to consider implementing similar programs. But the real changes will have to come from the bureaucrats. And speaking as a bureaucrat, I can tell you that we’re not always ones at the bleeding edge of social change.
Further evidence that the world is astonishingly small: Steve Elliot, the attorney interviewed for the article, was one of my mentors when I clerked at the Minnesota Disability Law Center many years ago.
Marc I’m adressing you via your blog because you don’t appear to open your mailbox at times. I’m asking you some favour this time.
I’m confident to do this because you know a lot about disablity, about people’s rights, and about politics. In fact you are the only person I know who possesses thee 3 kinds of “knowledge” at the same time.
Now my request:
Would you, I mean could you be willing to glance at http://www.petitiontocuresma.com
Because your name faetures in it, at least in one of the comments. Somewhere I guess about nr. 11,130 or sth.
It is not a comment that will haunt you at night or during the day!
Then I would find it a kind and humanitarian gesture, and even one in your own interest, if you would sign this petition, urging Congress to pass a bill in favour of research for sma and 600 other neurological and genetic conditions. It would be a dream if you’d mention it in your blog; although I know it is not the rule readers ask such a thing and limit yor freedom in this way.
I think the family Strong with their cute baby-girl suffering from SMA (so near to a cure as they say!) have put the goal of fifty thousand votes a bit too high.
Thank you!
Mieke
from Izegem