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Trapped 

Five years ago, a U.S. Supreme Court ruling on a Georgia discrimination case called for the desegregation of mental institutes and nursing homes nationwide. But today, few in Georgia have been granted that freedom.

Rhonda Davidson slouches into the threadbare couch. She pops a handful of Reese's Pieces into her mouth and stares into space with empty, glazed eyes. She tries to talk around the candy bits shoved between her lips.

"I want to get out of here," she says in a low, slurred voice.

She adjusts her misshapen Braves baseball cap and keeps glancing around the small, white room adorned with fake flowers, a lone painting, a couch and two chairs. She's looking for something. She finds nothing. She wipes her nose with the cuff of her gray sweatshirt.

"They called me a bitch this morning because I accidentally wet the bed," she says. "It's because of the medicine. It's not my fault."

She attempts to recall the incident, but stops and starts abruptly.

"Can I have a cigarette?"

She's told she can't. She's already reached her limit for the day.

"I don't like all these rules," she says. "I just want to get out of here."

She turns her pale face toward me. "Who are you? Do you have any lipstick for me?"

No, I reply, but I do have a pack of gum. She grabs it as I pull it out of my purse. Her lawyer explains who I am.

"I'll talk to you once I have a cigarette," she says.

She knows how to bargain.

Her lawyer, Atlanta Legal Aid attorney Sue Jamieson, convinces an attendant to let Rhonda have one more smoke. It's a special occasion. Rhonda has visitors. Rhonda rarely gets visitors.

We walk down the hallway. It's quieter than a tomb. Rhonda ambles in front. A faint stench of urine and body odor trails behind her. We reach a locked gray door. The attendant fumbles for the key, no small task since the keychain holds about two dozen. We descend two flights of stairs and reach another locked door. The attendant opens it, and we step into a courtyard enclosed by a black iron fence. There's a scattering of wooden benches and two worn picnic tables. We sit at one of the tables. The attendant settles on a bench across from us.

"It's cold out here," Rhonda says. Jamieson and I are comfortable on this balmy October night.

Rhonda snatches a cigarette. She sighs after she inhales her first puff.

"I want to go shopping and I want to go have a hamburger," she says. "I want some new clothes and shoes, shoes like hers," she says, pointing at my brown heels.

She can't remember the last time she left the facility. A few weeks ago, Rhonda signed up to go to Golden Corral for a special meal, but she didn't fill out the papers correctly. She was denied, and sat alone on her twin-sized bed while others filed onto a bus that took them to the all-you-can-eat buffet.

She misses her home in Fort Valley, outside Macon. She hasn't been there in six years, she says. Her daddy couldn't care for her anymore. One day he called the sheriff and plopped her in a county car. She arrived here, without any explanation.

"I didn't help around the house," she says. "I just sat on the couch. I guess that's why."

The attendant tells us we've got to go. It's 8:30 p.m.

Once inside, Rhonda lingers next to the soda machine.

"I want a Mountain Dew," she says.

"We already got you candy," Jamieson replies.

I dig through my wallet and find 60 cents. Rhonda smiles.

"You can have some if you want," she says.

Rhonda plunges back into the couch and opens a plastic container that holds a slice of strawberry shortcake. She takes two bites and then pushes it away.

"I found a letter today," she says. She pulls a tattered gray piece of paper out of her shirt pocket. She doesn't know what it says or where it's from. It's hers now. She then pulls a red papier-mache mask from her pants pocket. She made it during arts and crafts class. It's starting to unravel.

She scans the room again and clenches the letter and mask in her fist.

"I keep the things important to me on me," she says. "I'm getting smarter and smarter every day."

 

Rhonda has risen to orders and followed rules for the past six years at Milledgeville's Central State Hospital, Georgia's largest mental institute. Diagnosed with schizophrenic affective disorder and borderline personality disorder, the 33-year-old retains the mental capacity of a fourth-grader. She's never gone swimming. She rarely receives hugs. She's told what to eat, what to wear, when to wake and when to sleep. She perpetually enters and exits the locked doors of the Freeman building, which houses long-term mentally ill patients. She only gets to leave the isolated, 1,125-bed, 1,750-acre property for special occasions. On Thursdays, she can take a bus ride around downtown Milledgeville, but she can't get off the bus. She just stares out the window at the shops, restaurants, office buildings and gas stations.

She wonders when she'll be able to escape the strange place that serves as her home. She wonders if she'll always live with two roommates in a stark room. She wonders if she'll ever get to play in a creek, buy a sweater at the mall or eat pancakes on a Saturday morning.

In December 2002, Rhonda's chances of leaving the institution seemed to have improved. Her doctor deemed her capable of living in the community, an evaluation that by law gives her the option to leave a state institution and live in a community-based setting. The law that granted Rhonda that right, an amendment to the Americans with Disabilities Act, was prompted by a 1999 U.S. Supreme Court decision. The case involved two mentally retarded women who fought for the right to leave Georgia Regional Hospital Atlanta in Decatur and move to a setting where they could interact with the outside world.

Called the Olmstead ruling, because the women's case began as an action against Georgia's then-commissioner of the state Department of Human Resources, Tommy Olmstead, the 6-3 opinion found that "unjustified institutional isolation of persons with disabilities is a form of discrimination."

The ruling affected everyone from the mentally ill to the mentally retarded, the physically disabled to the elderly, who lived in the nation's mental hospitals and nursing homes. It was hailed as the Brown vs. Board of Education for the institutionalized, and it ordered states to move at a reasonable pace to give people who could function outside institutions the opportunity to live in the real world.

Advocates thought Georgia -- the birthplace of the case -- would be among the first to implement the monumental change.

But it hasn't been.

More than five years have passed since the decision was handed down, and today Georgia ranks among the slowest states to de-institutionalize those capable of living outside institutions. More than 4,000 Georgians living in institutions and nursing homes have expressed a desire to live in the community, and that number only represents those people whom advocates have reached so far. During fiscal year 2004, however, Georgia officials identified just 145 people living in institutions who were eligible to live in community-based settings, according to the National Conference of State Legislatures.

Individuals like Rhonda have waited and waited -- some of them for two decades or more -- to leave a mental hospital or nursing home and enjoy the basic freedoms of average citizens. But they haven't been able to leave, even after filing lawsuit after lawsuit asking the state to comply with the Olmstead ruling. Jamieson has helped file dozens of complaints, including one federal suit on Rhonda's behalf. Still, the state drags its heels.

The state estimates that it's moved 2,000 people out of institutions and into community-based homes since 1999. That's low compared to states like Arizona and New York, which have so far moved more than 7,000 people out of institutions as part of the Olmstead mandate.

Georgia's snail-paced reaction to the Olmstead ruling raises fundamental questions about the systemic treatment of the disabled. Some experts claim five years is too soon to expect widespread change; after all, it took almost 10 years for the country to desegregate under the Brown vs. Board of Education ruling. Others say many states have been stumped as to how to best execute the reforms called for in the Olmstead ruling -- especially in times of budget constraints and Medicaid cuts.

Yet there are states, such as Oregon, that have overcome those hurdles. Oregon was the first state to spend a larger percentage of its Medicaid budget on community-based services than on institutions -- and officials there found that the shift saved the state money.

What's more, even when Georgia has moved people out of institutions and nursing homes, many patients ended up in personal care homes, which critics claim are cozy but nonetheless segregated settings. Disability advocates argue that the Supreme Court envisioned physically and mentally disabled people ultimately interacting harmoniously with nondisabled people in a setting where they'd receive services a few hours a day. But so far, a tiny fraction of Georgia's institutionalized have been given that opportunity.

The vast majority of those eligible to live in the community continue to wait. They know most citizens don't ever think about them or the confined corridors they call home. They know most people think they're slow and stupid, incapable and high-maintenance. They also know anybody can become one of them in the blink of an eye; people get into debilitating car accidents or survive wars that perpetually haunt them, and they end up institutionalized in an instant.

 

In 1984, 47-year-old Maxine Craig entered a nursing home after suffering a traumatic brain injury. The injury caused her to develop epilepsy and suffer mild brain damage. Now 67, she's been institutionalized for two decades.

Although Maxine needs help bathing, dressing and pureeing her food because she doesn't have a full set of teeth, she can feed herself and go to the bathroom on her own. She wants to leave Rosewood Nursing Center in Macon and move to a personal care home in Marietta, to be closer to her daughter and in a more serene setting.

Rosewood is understaffed and overpopulated, according to the Georgia Office of Regulatory Services; in April, a state inspection reported 18 health deficiencies at Rosewood. The average number of deficiencies reported per home, statewide, is eight. Inspectors found the home failed to store, cook and serve food in a safe, sanitary way; failed to keep infection from spreading among patients; and had a high rate of medication errors.

On a sunny Monday in November, Maxine was roused at 7:30 a.m., and an attendant helped her put on a red jumpsuit and brush her greasy hair. She spent the day exercising (by raising her arms up and down 10 or so times), drinking coffee and playing poker with other residents, carefully arranging her cards with her purple-polished nails.

Maxine should've had the opportunity to finally move out of a nursing home last year, when she was told the home she was living in was going to close. It was the state's responsibility to inform patients like Maxine about the option of living in a community-based home. But somewhere along the line, the information wasn't relayed to Maxine.

"It's my biggest pet peeve," says Susan Walker Goico, one of Maxine's lawyers, who has filed suit on Maxine's behalf in an attempt to get her transferred to a community-based home. "There are so many people in nursing homes who don't even know that community-based homes exist."

Goico says the information breakdown occurs when literature on community homes is given to patients' social workers. Goico says the social workers often aren't fully informed of the law and don't know how to go about implementing it -- or they simply fail to pass the information on to their patients.

"If we're going to leave it up to the nursing homes and institutions to get this information out, then we need to educate the staff and social workers to let them know what's out there," Goico says.

But with the state itself appearing incapable of forming a clear plan for following the Olmstead ruling, it's no surprise that state social workers are often in the dark.

In 2001, then-Gov. Roy Barnes created a task force of disability experts to recommend ways to desegregate institutions. Jamieson says the plan was "redlined to death" and fell to the wayside.

It wasn't until February of this year -- more than four years after the Olmstead decision -- that Perdue released an official Olmstead plan. The 24-page plan is sparse compared to the state of Oregon's 86-page strategy, and it includes few recommendations that Barnes' task force suggested in its proposal three years earlier.

Gwen Skinner, director of the state Division of Mental Health, Developmental Disabilities and Addictive Diseases, the office that oversees the state's mental institutes and nursing homes, says budget constraints and a limited number of resources have restricted the state's ability to de-institutionalize those able to live in the community.

"When you look at Georgia, you have to look at the context and see what's happening across the country," Skinner says. "Georgia is one of the fastest growing states, and there are a lot of demands on the system."

Yet a 2004 University of Colorado study found that community-based care, per patient, would cost less than half the amount that Georgia spends institutionalizing a patient. The state spends an average of $79,245 per year to pay for the care of an individual like Rhonda or Maxine. If the women lived in an independent living facility with personal assistance, it would cost $35,969, the study found.

What's more, the state is federally reimbursed for at least 60 percent of the community-based programs it administers through Medicaid. Yet Georgia spends the majority of its Medicaid budget -- nearly 80 percent -- on institutional care. Just 16 percent is channeled to patients living in the community.

For Rhonda, it's an even bigger battle to leave an institution, because the state gives preference to de-institutionalizing the physically disabled over the mentally ill.

"There's very little planning to help people with mental impairments return to the community," says Anna McCrary, a disability attorney with Georgia Legal Services in Macon. "But the community services set up for mental health don't provide enough care for the mentally disabled."

Even when an institutionalized person is approved for transfer to a community home, the wait isn't over. Most homes have long waiting lists that move at a slow pace. Part of the waiting list problem lies in the lack of community-based facilities; the homes are a relatively new concept, and few state buildings are designed to foster such living conditions. To re-outfit them would be a pricey endeavor.

Yet Michael Allen, a senior staff attorney for the Bazelon Center for Mental Health Law in Washington D.C., says once the state builds such settings, waiting lists would shorten, transitions would be smoother and the cost per patient would wane.

Skinner, the state mental health director, says Georgia is currently redirecting some resources from hospitals to community-based services, but that a major shift will take time.

"We're planning for and expanding with every opportunity we get," Skinner says.

However, not all the blame for slow de-institutionalization falls on Georgia. The feds are putting little pressure on the states to follow the Olmstead ruling. In June 2001, George Bush signed an executive order calling for the "swift implementation of Olmstead" and announced that fulfilling the Olmstead mandate was a key component of his "New Freedom Initiative."

But little in the way of "swift implementation" has occurred in the past three years.

A month before Bush signed the initiative, a handful of Georgia legal groups filed a complaint with the U.S. Office of Civil Rights to fully enforce the Olmstead law. An Office of Civil Rights staff member working on the case says the investigation is ongoing, but the Georgia legal groups say they've been hearing that response for the past three years.

"The state has to think about these consumers differently and incorporate them into our community," Skinner says. "It's not different from any other social service. It just takes time."

 

The double doors of the brick, ranch-style home with white columns and black shutters are unlocked. A couple of miles from the home's manicured lawn sits the main strip of Jeffersonville, a small Middle Georgia town. On its outskirts, a sign at the side of a small pond warns, "Fish at your own risk." The town's hubs are the Dollar General and Piggly Wiggly.

Inside the home, plush leather couches give a cozy feel to the living room. Only 20 patients live here.

Sitting in the kitchen, Floyd Bryant cuts a striking image in his pressed blue Oxford and navy blue vest. His new black sneakers shine, and his hair is neatly parted.

It's lunchtime at Brittany's Place, a personal care home, and the residents chow down on chicken and dumplings, turnip greens and cornbread. Floyd isn't that hungry. He takes a few bites of his lunch, his hand quivering as he tries to steady his fork. He wears two watches on his right wrist. His sleeve gets caught in the turnip greens, but he's quick to clean it with his napkin. He gulps down his full glass of milk and then pushes his plate away. He looks nervous, eating in front of a bunch of people in the home where he's lived for just two weeks.

Sometimes, the 72-year-old speaks about his nephews and growing up on a farm, about how he likes Diet Coke, Reba McEntire and bingo. But today, he doesn't say much.

Floyd is diagnosed with epilepsy, schizophrenia and chronic obstructive pulmonary disease. His piercing blue eyes wander around the room and his mouth trembles as he tries to speak. Floyd glances at the TV, where Bob Barker is asking "The Price Is Right" contestants to place their bids, then he settles on staring out the window.

At Brittany's, Floyd gets his own room. He's on the right wing, a couple of doors down a short hallway. A white sheet of paper taped to the door says "Floyd Bryant" in aqua-colored marker. Inside, there's a twin-sized bed with a plaid comforter, a green velour chair and two wooden dressers. There's also a large window. Floyd likes it because he can look out at the vast front lawn.

He has two radios sitting on one dresser. Lee Ann Womack's "I Hope You Dance" plays on one of them. Two pictures sit next to the radios. Floyd points out his uncle in one and his mother and sister in the other. "Tell my sister to write me a really long letter for Christmas and to send money," Floyd says.

He un-Velcros his new shoes, climbs out of his Tracer EX wheelchair and rolls onto the bed.

"I want to take a nap," he says.

The radio is turned off and Floyd says goodbye. He's tired and still adjusting to life at Brittany's.

Despite its pleasantries, Brittany's Place is still a home that mandates waking and sleeping hours, meal times and social hour.

"People are moving up in small increments, but this isn't what's thought of as community integration," McCrary says. "It's just a different form of isolation."

Yet Charles Martin, who runs a group of facilities similar to Brittany's Place, says personal homes are a step in the right direction. Some people leaving institutions couldn't function without a strict regiment, he says. And he points out that not every institutionalized person might want to live -- or be remotely able to live -- in regular contact with the outside world.

"We work with our patients to teach them skills that would help them live in the community if they'd like to," Martin says. "But some folks could never live in the community."

Martin runs Classic Community, a for-profit company that manages nine community-based homes around Atlanta. His facilities are small. There are three patients at most per home, with one attendant. Residents rise at the same time every day, usually around 6 a.m., eat breakfast, and leave the home to receive six hours of vocational training. They learn to sew, type and cook, among other skills. By 3 p.m., they're back at the home. They get a snack and have individual counseling sessions in the early evening. At night, they might go out for pizza or go bowling.

All of Martin's residents are on Medicaid, and Classic Community receives the majority of its revenue from the federal program.

"This is a great setting for many disabled people," Martin says. "I think the Olmstead decision can be interpreted on different levels."

But others, like disability advocate Allen, say personal care homes are still too isolated and regimented to fulfill the spirit of the Olmstead ruling.

"People might say they live in the community, but if they live in a place where they can't go out on their own or interact with people [without] disabilities, I'd say that's no step at all."

Another consideration with personal care homes is that, because they are mostly privately owned, they are not as closely monitored as state-owned facilities, according to Allen. After a person or corporation becomes licensed as a community provider, the state doesn't have the everyday access that it does with its own homes.

What's more, personal care home providers usually receive the entire Social Security or Medicaid checks of their patients and may also get a supplement from the state. The system can be abused if providers misuse or pocket funds at the expense of the patients. Although the practice hasn't been widely identified in Georgia, it became a serious problem in D.C., where the state failed to regularly monitor private homes, and dozens of residents died as a result of neglect.

But Georgia's Skinner says the state licensing and inspecting process for private community-based homes is stringent. And state officials and some disability advocates argue that without private homes picking up some of the slack, it would be impossible to fund the widespread de-institutionalization called for in the Olmstead ruling.

"Without the help of personal care homes, even more people would be stuck in institutions," Jamieson, of Atlanta Legal Aid, says. "They might not be the ideal solution, but it's much better than living in a brick box."

 

Greg Sutton has only lived in St. Paul's Apartments in Macon for a week, but residents there already know to call the aspiring rapper "Lil' G."

A "Welcome Home" banner hangs above the window in Lil' G's apartment, and a half-dozen baseball caps hang on a Harley-Davidson hat rack. Two plastic bowls hold at least 100 yellow-wrapped pieces of Dubble Bubble gum. Lil' G reaches for a piece every few minutes.

"I really like gum," he says, smiling sheepishly.

There's a photo of Britney Spears on the coffee table. A NASCAR calendar hangs next to the couch. Two yellow ashtrays hold the remains of his Kent Golden Lights.

For the first time in three years, the 27-year-old isn't told when to wake. He isn't told what to wear. He can walk outside at any time of day. He finally enjoys the freedoms of a normal citizen.

At 3 feet 4 inches tall, Lil' G suffers from dwarfism. He also has mild mental retardation.

He tries to play it cool with visitors, but he can't hide his excitement. He's finally out of a nursing home. He's able to pay the $190 monthly rent with his Social Security check and requires only three hours of help -- two in the morning, one in the evening -- per day. He's learning to cook, and a stepladder helps him easily reach his cabinets and freezer.

"I don't have to deal with any more of that nursing home crap," he says.

Lil' G is one of about 200 residents at the rent-controlled, independent-living facility. He lives the life the Supreme Court envisioned when handing down the Olmstead decision. He can take the apartment bus to Wal-Mart, go out to dinner and wander around the mall.

Compared to living in a nursing home, which cost the state $47,000 per year, Lil' G's lawyer, McCrary, estimates that his life in St. Paul's costs the state $20,000 annually.

Lil' G's life is what community-based services are supposed to offer. Lawyers for Rhonda, Maxine and Floyd argue that, with some help, they too could be living in such a setting, with similar freedoms. Rhonda could buy a sweater at the mall and make herself pancakes in a place like St. Paul's. Maxine could visit her daughter and play cards at a senior center with nondisabled people, something she hasn't had the opportunity to do for two decades. Floyd could see his sister and meet other, nondisabled bingo enthusiasts.

Right now, they can't do those things. But under the law, they have the right.

The Olmstead decision recognizes that "confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment."

Jamieson says: "There's a continuing sense of disappointment and frustration that the state doesn't comply with Olmstead, regardless of what the law says. This isn't a way to comply with a civil rights mandate."

alyssa.abkowitz@creativeloafing.com

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