Bedsores and Integration

The only reason my father didn't die in a nursing home is that his bedsores had gotten so bad that the place shipped him off to the hospital there at the end. By then he lay in a fetal position, reciting numbers over and over. My phone number. My street address.

The nursing home wouldn't say he had Alzheimer's. They couldn't get reimbursed for him if he had Alzheimer's.

By that time he was a "Medicaid bed." What little money he'd had was long gone. But the place he was in was cleaning up all the same -- and not with Lysol.

He belonged at home, but he was in an institution. My instincts dulled by sadness, afraid to leave him alone while I worked, unable to work at home, unable to hire someone to come in -- no money, no way to pay them -- money only for a "bed" in a nursing home, via Medicaid -- I succumbed to those arond me who said it would be "better" that way.

Me and countless others, told the same thing. For decades now.

The forces that inexorably pushed and pulled me toward putting my 80-year-old, mentally adrift father into one of those hellholes that by some Orwellian logic we continue to call "nursing homes" are not that different today than they were over two decades ago.

And that's saying something.

I never see anything in my local newspaper about the great shift that is supposed to be taking place in the wake of last summer's Olmstead Supreme Court decision, the shift that means states have to let people get services in the "most integrated setting" -- like at home, where they want to be.

I keep watching for it.

The Olmstead decision, say those who argued our side, is a lot like the 1954 Brown v. Board of Education decision that ordered racial integration of the nation's public schools. Olmstead supposedly affirmed the Americans with Disabilities Act's "integration mandate." -- a few simple words saying that a state's services must be provided in the "most integrated setting appropriate."

That "appropriate" is the big loophole.

The May 18, 1954 New York Times front-page headline was two-lines deep, all the way across the page: "High Court Bans School Segregation; 9-to-0." I'd dug it up just to see what a newspaper looked like the day that other integration decision came down.

" Separate educational facilities are inherently unequal," the Justices had said that time. Segregation, of itself, was unconstitutional.

The issue had been on the Court's front-burner since 1952, when the 9 Justices had heard several cases calling for school integration, but been unable to reach a decision. They'd ordered re-arguments. From 1952 to 1954, the nation waited for the Court to decide.

People who think the civil rights movement began in the 1960s need to get out the history books. The National Association for the Advancement of Colored People had been pushing the courts for decades on integration.

Where the disability rights movement fits by comparison I'm not sure. But I am sure of one thing: Segregation in institutions is not yet seen in this nation for what it is. It's seen as "care."

In the spring of 1954, court watchers were restive. Reporters packed the Courtroom daily. Tension in the nation was palpable. Already South Carolina and Georgia had announced they'd close their public schools rather than integrate.

I would start first grade a few months later. Kentucky's segregated schools would be coming undone now. My mother, an elementary school teacher in Louisville, was glad of integration's coming. But I think she knew the dangers, too, that might come on that first day of school. Although my mind has no details, I do remember the fear in the air.

Where is the momentousness to accompany the Olmstead decision? I look for it and cannot find it. "It will cost money," say the few news articles I find. People yawn. State bureaucrats seem to carry on as usual. And the money -- "bed money" they call it -- continues to flow to the nursing home operators.

Our cover story is about how the flow of money to nursing homes wipes out the Olmstead freedom train. Read it and weep.

Then join Freedom Clearinghouse. Please. www.freedomclearinghouse.org


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