Five years ago, Charlene Day had to be institutionalized. Dwarfed since birth, with arms and legs a third as long as the world expects and a narrowing spine pressing against her nerves, she had lost her ability to walk, use the toilet or get herself out of her wheelchair. Her muscles clenched with spasms; her brain stormed with seizures, depressions, bursts of fear and fury. The only option anyone could imagine for her was a nursing home. She was 33 years old.
At the home, life was a blur of drugs, braunschweiger and bingo. "They used Ativan (an anti-anxiety, anti-seizure drug) like water; it was the answer to every problem," she groans. "And the food! One night they were serving braunschweiger sandwiches and there was white fuzz on them, and the cook tried to tell me it was built-in mayonnaise. I said, 'I'm disabled, not stupid.'"
The worst of it was, she remembered freedom, remembered "riding the Bi-State bus to the YMCA, Union Station, the card shops. Pete, my friend who taught me about sports cards, he's in a wheelchair, and he got bored one day and took the MetroLink from one end to another, learned all the stops. We'd go everywhere." Now, the day's big interruption was recreation hour, "Bingo or trivia. It was OK," offers Day, her voice polite. "But it was not the way I wanted to live my life."
She tried to run away but only made it as far as the street. They sent her to a psychiatric ward, but when she described how she'd been treated, the home's psychiatrist showed up and said she was making it up. "I told him I had God as my witness," she says. "Then they sent me somewhere worse (a Midtown home that has since been closed). There were spiderwebs on the air conditioners, people were pouring down with sweat, and there were flies all over the food." Allowed to go outside, Day slammed the joystick on her motorized wheelchair and escaped down the sidewalk. Two hours later, police found her on the next block.
After two more trips to the psych ward and an awkward stay at her mother's inaccessible house, Day called Paraquad, one of the state's 21 independent-living centers. They helped her move into the Boulevard Apartments, designed to support people with disabilities. Nobody else thought she could make it living alone -- and for the first year, she proved them right with panicked daily trips to the emergency room and an attitude so defensive she'd smash her wheelchair into a brick wall rather than take help.
When the apartment manager started talking eviction, Duane Gruis, one of Paraquad's independent-living specialists, rolled his wheelchair into Day's tiny apartment and calmly began to teach her how to manage her frustration, modulate her anger and interact more "appropriately" (a word they now use to tease each other). Gruis gradually learned about hurts Day had never been able to voice: old instructions like "People your size shouldn't speak up -- something might happen to you"; care that manhandled the last vestige of control away from her. "If they just would've let me go off by myself and calm down, instead of grabbing me and taking me out of my chair," she says now. "I wanted to tell them that, but I couldn't express it. Duane helped me understand why I blew up."
Day has just signed her third lease, with no static. A personal-care attendant comes for five hours in the morning, three in the evening and three on weekends. As for the rest of the time, "I wear diapers," she shrugs, unfazed. "In the home, I was having bladder infections from them not cleaning me, and I was on 12 different medications and sleeping all day long. Now I just take a few. I go to the library, do research on being a self-advocate. I go to the card shops and visit my family; I go to Tom's Bar and Grill, and the 34 Club -- they've got a jukebox with Marvin Gaye." Her next goal is to "support myself, run my own transportation business."
Above the compressed body she's worked so hard to manage, her blue-green eyes are as bright and fluid as the ocean: "I have a lot of dreams."
Five years ago, moving Charlene Day into the community seemed ridiculous and criminally irresponsible. Today, not moving Charlene Day into the community would be grounds for a lawsuit.
The shorthand for the new imperative is "Olmstead," referring to a powerful U.S. Supreme Court decision rendered last June in Olmstead vs. L.C., which removed much of the wiggle room states had insinuated into the Americans with Disabilities Act. In the lawsuit, two women with mild mental retardation and accompanying psychological disorders were institutionalized for years, even though treatment professionals pronounced them ready for community-based programs. The U.S. Court of Appeals, 11th Circuit, branded this "unnecessary institutional segregation" and, when Georgia pleaded poverty, sharply reminded state officials that community services would have been cheaper in the long run.
The Supreme Court upheld this ruling, noting that even if it had cost more to place the women in the community, that cost was irrelevant. In accordance with the Olmstead decision, unless states can show that moving someone into the community would jeopardize existing programming for others with disabilities, they are expected to reallocate -- or beg from their legislatures -- until they can pay the bill. As long as the treating professionals say someone can thrive in the community, and the person does not oppose this, the necessary services must be made available as soon as possible.
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.
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.
Cerebral palsy blocked the natural development of Diana Roscoe's brain, preventing her from thinking abstractly or expressing herself in language. It also caused the scoliosis that has twisted her spine into a Möbius strip, requiring her to be lifted like porcelain from a specially conformed wheelchair. "It was a restricted birth," explains Diana's brother and guardian, Joe Roscoe. "The doctor was late, so they tied my mom's legs together when Diana was already crowning, cutting oxygen off from her brain."
Expected to live only to age 3, Diana, now 43, outlived both her parents. Three years ago, Joe and his wife, Julie, finagled her transfer from an institution in El Paso, Texas, to the Bellefontaine Habitation Center in North St. Louis. Diana has been a part of their lives all along; she used to knock insistently on the dividing wall between her bedroom and Joe's, calling loudly, "Hel-lo!" Not only did Julie weather the interruptions, she came to share Joe's affection for his sister. "Everybody loves Diana," she says. "She won't let you not love her!"
Seeing her is another story: Joe's working three jobs, and he and Julie have two young children, so trips up north are a logistical nightmare. The Roscoes' dream -- which Olmstead may just make possible -- is to have Diana living closer to their home in Kirkwood, maybe in a group home where she could share 24-hour care with a few roommates and they could run by all the time to see how she's doing.
"She does miss you guys, you can tell," says Carol Odunleye, Diana's unit program manager. She leaves and returns with Diana, who stretches her arm out until it's obvious she wants a hug. "Oh my goodness, you make me bend this old back of mine," Odunleye grumbles, holding her a long time. Then they travel again, Diana moaning "ow" every time they pass through a doorway. It's become a reflex; she's terrified of being dropped or banged. But Odunleye teases her out of it, and Diana, recognizing the tone of voice, laughs infectiously.
Compared with the actual houses dotting Bellefontaine's grounds, where supervision is softened by bikes, gardens and fireplaces, Diana's eight-resident suite in the Eliot building feels institutional. Steel carts line the hallway, and privacy curtains dangle conspicuously between the plaid-quilted beds. Diana is unimpressed with the pet-therapy room, potbellied pig notwithstanding, but she adores the music room's spinning mirror ball and Lava Lamps. Diana really "cuts a rug," say staff members; she loves music, and at the slightest suggestion she laughs aloud and dances in her chair until it rocks.
"We've been given a great gift, just to have her here, and she does get wonderful care," says Julie. "But when we tried just to set up a weekly phone call, the switchboard operator grilled us: 'Why do you want to talk to her? She's a resident!'" People who come there usually stay.
Is it realistic to move Diana away from Bellefontaine, where stone walls surround a campus that looks like a restored historic village and only the reality-orientation program reminds residents they're part of a larger world? "Well, you have to lift her with two people," begins Odunleye, "and staff couldn't just not show up if they felt sick. But if they could get 24-hour supervision like we have here, then yes, it would be workable for a lot of our residents. And then they would be like regular citizens. They wouldn't be ... set aside."
Odunleye helped one man move into the community six years ago. "He uses speech more often now, makes his own decisions more readily. At first he gained 30 pounds going to the refrigerator all the time; he was drunk with freedom! But eventually he learned -- how to live his life."
The Roscoes were told that supporting Diana in the community would cost nearly $300 a day, double the institution's average daily cost. "But that's an average cost," notes Julie, who is convinced that Diana's costs would be commensurate. "She doesn't require respirators or medical personnel," inserts Joe. "This isn't intensive care; it's just day-to-day life as she has come to know it."
The Roscoes were unusual in that they knew to ask for a case manager. Until recently, most residents at Bellefontaine had to rely on the staff to advocate for them -- a neat trick, given that they'd be advocating against their own institution. Now one case manager has been hired for all the Bellefontaine residents, along with another for residents in the other St. Louis facilities, in a good-faith attempt to help everyone who wants to move into the community.
"Olmstead says, 'Give people choices, and honor their requests when they say they want out,'" says Dr. Ralph Sneed, one of two deputy directors for the DOMH Division of Mental Retardation/Developmental Disabilities. "Somehow we need to ensure that all persons who want to live in the community have that option." His voice is distant, lost in the chasm between law-abiding rhetoric and a reality that doesn't yet support it. "The supports ... aren't always there."
That's why, until Olmstead, the pace of transition was the pace of a tired donkey, nudged a few yards into the community by fiery advocates, then stalled by lack of funds or services. Each year, maybe a dozen people have made the move, and it has generally taken several years to find them affordable places with neighbors who won't recoil in horror, not to mention funding, staff and the right roommates. "As people become more aware of Olmstead, the tempo may pick up," concedes Sneed. "Olmstead may ... expedite things."
Not if nobody knows it happened, snaps Jeff Corbin. He directs the Gateway Regional Advisory Council on Developmental Disabilities, which is charged by state statute with advising and monitoring DOMH programs for people with developmental disabilities. He was delighted to see the department anticipate the Olmstead decision by writing new, flexible language -- "and/or purchase of community services" -- into House Bill 10, the DOMH budget, for 2000. This meant Medicaid funds could be used to buy services in the community, even day programs for residents who chose to stay at the hab centers. Excited, Corbin asked when residents and families would be notified.
Not anytime soon, came the answer.
He offered -- twice -- to write a letter himself, informing people both about HB 10's new provision and the Olmstead ruling. The second time around, he'd gotten as far as stuffing the envelopes and only needed DOMH to supply the confidential mailing labels. Then the word came down: no notification yet, not until there was an Olmstead plan in place.
Corbin hit the roof. The new bill opened a window of opportunity for a lot of people, and they weren't even being told. Instead, DOMH director John Solomon had sent staffers a wink-and-nod memo, saying "the flexible language in facility budgets is permission language, not mandatory language."
Asked about the reticence, Sneed says, "In my heart of hearts, I truly believe people are aware of the availability of funds. True, nothing has gone out in writing yet, but the only issue there is to make sure the message we give parents in St. Louis is the same as the message we give in, say, Higginsville."
What about identifying hab-center residents who might want to move into the community? "I don't expect a massive rush," says Sneed. "The first time we brought it up, approximately 41 people expressed interest." That was in July, right after the Olmstead decision. So what exactly did they tell residents and families about the decision? "I don't know if, in all cases, we mentioned Olmstead per se," amends Sneed. "We were just letting them know we were prepared to offer some alternative-type programs."
Corbin wants more explicit information released, ideally by disinterested parties. He also wishes someone outside the hab centers could conduct the assessments, "so it's not skewed to say, 'This person's support needs are through the roof.'" Sneed says that's fine, but an independent assessment "has to be funded." Money is on his mind lately: Not only are the hab centers in danger of losing it if Medicaid-supported residents decide to leave, but they're in danger of being sued if people aren't helped to leave. Meanwhile, Missouri has about 1,300 people with developmental disabilities living at home with elderly parents, and soon they, too, will fall under Olmstead, as people at risk for institutionalization.
Dennis Cardwell, 51, managed to deal with his multiple sclerosis at home for years, then woke up one morning and couldn't get out of bed. He found himself a "nice" nursing home, in shady Webster Groves, but the staff was bossy and unavailable and the hot dogs were greenish and visits with his daughter meant sitting in the lobby, nodding at elderly residents and trying to ignore the inevitable Lawrence Welk or Wheel of Fortune blaring from the common area. "I kept wishing we could just watch a movie together," he blurts, "or go to Queeny Park."
Eighteen months later, Cardwell made it to the top of the waiting list on a Missouri program that pays for personal-care assistants (PCAs). He was able to go back to his little house in Sunset Hills, where he spends hours on the computer, does his own grocery shopping, takes his daughter out for Chinese food or fettucine alfredo and watches old Audrey Hepburn movies with her. "It's a more normal way of living," he says with relief.
Normalcy is fragile, though; the program that funds his assistants will probably end up serving 51 fewer people next year, because when the PCAs' salaries were raised last year, the budget didn't rise with them. Meanwhile, Missouri legislators approved a fourth waiver extending PCA services to Medicaid recipients who needed more than six hours of service a day, or assistive technology, or modifications to their home. The waiver was to go into effect in July but was delayed until December. "Then they only let us sign people up at a rate of nine per month," exclaims Colleen Starkloff of Paraquad. "Now the state has put a freeze on it, and they haven't told us why. And we only have until June 30 to get 470 people on the program."
Ron Vessell, assistant commissioner for the Division of Vocational Rehabilitation, which administers these funds, says they're "slowing down to make sure we don't go over the appropriated amount. Since we started in December, we haven't been able to capture a whole year's worth of federal dollars. By July, we'll have the program in place." Then the trick will be finding and training enough PCAs -- a job that can mean anything from scrambling eggs and wiping away urine to monitoring medication and manipulating high-tech equipment. It's a lot easier to say, "You want fries with that?" Plus the wages are low (usually $6.50-$7.50 per hour) and the turnover high (it's estimated at 16 percent in institutions, and 44 percent on up to 100 in the lower-paying, less stable community jobs).
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.