The Olmstead Challenge

The U.S. Supreme Court says it's time to end segregation: People with disabilities must be allowed to leave institutions and move into the community. Sounds great -- except the state's overwhelmed and the community's nowhere near ready.

For people with psychiatric disabilities, large institutions aren't the issue; they've all been emptied. "Now the question is whether there will be services intensive enough to really integrate people or they'll just be warehoused in the community," notes Vicki Fox Wieselthier, a community-development coordinator for BJC Behavioral Health. She wrote an amicus brief for the Olmstead trial, and last month she met with officials from DOMH about Missouri's "readiness."

"The difficulty," says Wieselthier, "is the way the state funds mental health. The 60 percent that comes from the federal government goes into general revenue, and from general revenue there is an allocation -- so some of the match might be used to pave a highway in Potosi. We have people on waiting lists for psychiatric services that are supposed to be an entitlement. Plus, they limit the intensity -- the most people can get is 26 hours a month, and if you're helping somebody who's just out of the hospital, 26 hours doesn't go very far."

She'd also like to see a better mix of services: "In the DOMH, you don't have personal-care assistants -- you only have trained clinicians, and they don't especially want to teach someone how to clean their toilet bowl. Yet there's plenty of money to keep people in residential-care facilities, which end up costing more because once someone's in, they're there forever.

"We need to front-load enough psychosocial services to keep people in the community, before they become habituated and think of themselves as nothing but lifelong mental patients," Wieselthier says. "What Olmstead's talking about is change at the back end of the system and the terrible work of rehabilitating them after all that damage has been done."

You can't drive down the long road to the Bellefontaine Habilitation Center without the security guard's head popping up. To protective parents, the place feels safe. After all, the state has to guarantee care; a private community agency might go broke or might not be sufficiently monitored. And people with mental illness or mental retardation are naïve, extra-vulnerable to harm or crime or heartbreak.

"Yeah, they are vulnerable; so are poor people without a high-school education, but we don't round them up and institutionalize them for their own good," snaps Ira Burnim, legal director of the Judge Bazelon Center for Mental Health Law in Washington, D.C. He mentions the phrase "the dignity of risk" -- a reminder that people with disabilities just might prefer the chilly breeze of freedom to a life swaddled in cotton wool. "Besides," he adds, "a large institution doesn't offer any more supervision than a group home. It's just locked."

St. Louis has its own painful examples: the St. Charles Habilitation Center, where a resident was able to sexually assault four patients before being apprehended; the Northwest Habilitation Center on Midland Boulevard, cited last year for poor care and neglect; scores of nursing homes cited for abuse, neglect and fraud.

But what about other people's safety, from residents whose behavior gets a bit disorderly? "The last thing you want to do with someone with behavioral problems is congregate him in a chaotic setting with lots of people who have similar problems," retorts Burnim. "That's especially true with mental retardation, because they learn, even more than the rest of us, by watching what their peers do. Besides, behavior problems are often just bids for attention or attempts at self-stimulation.

"Institutions tend to be places where there is very little stimulation," adds Burnim, "because everyone knows those folks are just there to be shut away. Putting people in institutions changes the way we view them. We have lower expectations, and we treat them worse."

Now Olmstead is raising the expectations.

For everybody.

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