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.