NPR ran an excellent story yesterday about kids with severe disabilities who may be forced into institutions when they turn 21. The story profiles a young Illinois woman who is ventilator-dependent who recently turned 21 and is now facing the possibility of losing her nursing care. Like many other states, Illinois’ Medicaid program doesn’t cover in-home services for kids with severe disabilities after they turn 21. Some of you may recall that Nick Dupree, a disability rights activist, faced a similar threat a few years ago in his home state of Alabama. Nick successfully lobbied the Alabama legislature to change its Medicaid laws. But Illinois, which has a $15 billiion deficit on its ledger, is reluctant to do the same. The family is currently suing the state in federal court under the Americans with Disabilities Act.
A related story profiles Katie Beckett, a pioneer of sorts in the home care movement. In the early 80s, Beckett was a little girl living in a hospital because of a severe brain infection. She couldn’t go home because Medicaid refused to pay for services in the home. Her story caught the attention of President Reagan, who signed a law creating a Medicaid waiver program that would pay for home and community-based services for kids like Beckett. Beckett is now in her early thirties and living independently in Iowa. This story is particularly fascinating to me because a “Katie Beckett” program in Wisconsin enabled me to stay at home after I became vent-dependent.
The main article points out that Medicaid policymakers didn’t anticipate that kids with such severe disabilities would reach adulthood. To punish them with institutionalization for simply outliving antiquated actuarial expectations is deeply cruel and an absurd policy. States are justified in claiming that a tough economy is tying their hands, but the current Medicaid financing model is fundamentally flawed. Even larger states don’t have the tax base needed to pay for long-term for an aging population and people with disabilities. The federal government could pick up a greater share of these costs, but the rightward lurch of Congress makes that scenario…unlikely. For now, people with disabilities and their families will have to fight these lonely fights themselves. There’s always hope that the economy will recover and states will be more flush with cash, but that’s little comfort to anyone who is being forced from their home and into a prison.
One of the things that struck me was the contrast between how the reporter explained the young woman and how the parents did. After listening to the reporter you assume the girl is completely void of any way of communicating. You listen to the parents and they make it very clear she was able to communicate and laugh and was A REAL PERSON.
I think too often policy makers, and others, who don’t know people with profound disabilities can’t see past the disability. The reporter was unable to report past the disability without the parents words. It dehumanizes. It makes people think that individuals with disabilities aren’t able to tell the difference between home care and institutionalized care. I’m so proud to live in a state that does see the difference and does work to keep all people in their homes and working when possible. It makes society a much richer place, even if there are costs attached.
Amazing how all of President Reagan’s conservatism and sink-or-swim-ism went out the window when there was an actual face to be placed on the suffering in the country he otherwise didn’t give a damn about.