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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."
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