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.

Or people can sue.

That single cool fact has Missouri, and all the other states, stripped bare as Adam, scrambling to weave a procedural fig leaf. They need to find, quickly, more money, housing, jobs, education, health services, personal-care attendants and training programs. Then they need to inform everyone now living in an institution that he or she might be able to live in the community and assess what the individual would need to do so successfully.

Missouri's Department of Mental Health (DOMH) already professes a devout belief in community integration; they've already moved people with psychiatric disabilities into smaller-scale facilities, reducing the number of long-term psych beds to a scant 125, and steadily decreased the percentage of people with developmental disabilities who are institutionalized, from 15 percent of the total in 1990 to 5 percent of the total in 1997. But the DOMH's share of the state budget has been dropping, too, so they haven't been able to establish enough community services to keep clients from cycling back into the hospital. At least 1,310 Missourians with developmental disabilities still live in large state-run institutions (plus another 1,314 in general nursing homes). Nobody even knows how many young people with physical disabilities are scattered in nursing homes around the state, but the independent-living centers' unadvertised waiting list for community services hovers around 600.

Diana Roscoe at Bellefontaine Habilitation Center. When relatives phoned, the switchboard operator sounded puzzled: Why would they want to talk to her? She's a resident.
Jennifer Silverberg
Diana Roscoe at Bellefontaine Habilitation Center. When relatives phoned, the switchboard operator sounded puzzled: Why would they want to talk to her? She's a resident.

Preparing for a consulting trip to St. Louis, Stephen Gold, an attorney with the national ADAPT (Americans Disabled for Attendant Programs Today) organization, flips through "Medicaid Long-term Care Expenditures for Missouri." "In 1998, a full 73 percent of the budget went to institutional care," he mutters, "and only 27 percent went to community-based services. Between 1991 and 1998, you had a 66 percent increase in nursing-home beds and a 37 percent increase in nursing-home residents. You have a small home-health program, almost insignificant, and a nursing-home population larger than the national average." He stops for breath, then exhales it in a long sigh. "What these numbers tell me," he finishes, "is that people are probably going into homes who don't need to."

Missouri does have four waivers to divert Medicaid funds from institutions, and the largest, the Home and Community-Based Waiver, increased ninefold between 1990 and 1997. But Missouri also has a lot of big brick buildings -- six huge habilitation centers for people with developmental disabilities, a wide array of residential and nursing homes and a financial system set up to feed those facilities first. Getting a Medicaid bed in a nursing home is pretty much an entitlement; getting services in the community is a crapshoot.

This is called "institutional bias," and it started back in 1965, when Medicare and Medicaid legislation dangled financial incentives in front of nursing homes that accepted people with disabilities. Soon we were spending four times as much public money on nursing homes as on home- or community-based care -- and each dollar reinforced the "medical model" that kept people with disabilities segregated. In the words of Michael Gottesman, the Georgetown University law professor who argued and won Olmstead, "Citizens were paying a very high premium for their fears and prejudices."

Now there's an official mandate -- spelled out by Olmstead and underscored in January by President Bill Clinton -- to end institutionalized segregation.

And we're not ready.

In Stephen Gold's opinion, "Missouri is probably in substantial violation of Olmstead. They should have already begun identifying people who are appropriate to get out (of institutions) by their name and the specific services that they need." There's no such list, though -- and several complaints have been filed against Missouri, on Olmstead grounds, at the federal Office of Civil Rights.

"There's a real sense of urgency," concedes Mark Pickering, executive director of the Governor's Council on Disability. "But we also want to be prudent, not give people false hope and then keep them waiting." Besides, to safeguard against impulsive, premature deinstitutionalization, Olmstead granted some built-in leeway: If states are making reasonable effort -- and moving people off waiting lists in a "timely fashion" -- they can't be punished.

What the court didn't do was define "timely fashion." Missouri hasn't set any firm deadlines for itself yet, but more than 75 "stakeholders" -- government officials, advocates, agency directors, people with disabilities -- showed up at the first Olmstead task-force meeting, held Feb. 4 in Jefferson City. Two months later, the governor announced that he was forming an official Olmstead commission, as well as the larger task force. He intends to use their feedback to fashion his own official Olmstead compliance plan -- although so far nobody's been put in charge of assembling and reporting that feedback.

Olmstead is big -- so big it's been compared to welfare reform -- and that much change, all mandated at once, can be paralyzing. Hoping to prod a little action, advocates drew up their own draft plan and submitted it to the governor on April 14, recommending academies to teach state employees about independent-living and community options; discussions with an independent-living advocate before someone is institutionalized; a timeline to identify people who can live in the community and help them move, finishing by September 2001.

The word nobody's using is "deinstitutionalization," a painful reminder of the 1980s hospital closings that ushered people from the drugged confinement of asylums to free cardboard boxes under bridges. Living "in the community" sounds like an automatic improvement -- but it's only better if there really is a community, with a welcoming, tightly woven net of support, waiting to receive you.

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