Suing to Get Out In the World
By: Source: AARP Bulletin Today Date Posted: 2004-05-28 14:54:00-04:00
On a sunny January day two years ago, 70-year-old Jesse Fitchett packed everything he owned in a plastic bag, put on his Giants baseball cap and said goodbye to his friends in San Francisco's Laguna Honda nursing home. Then Fitchett—partially paralyzed and in a wheelchair—rolled out the door of the big, grim building, an early recruit in the growing rebellion against nursing homes.
After six years in Laguna Honda, he was moving to a small, one-room apartment. "I'm way up in age, but I love living on the outside," he said recently. "Leaving that nursing home, it's like I got out of jail."
Most people desperately want to avoid going to a nursing home. But without alternatives for care, they often have no choice. Fitchett and other residents of Laguna Honda, one of the country's largest nursing homes, had no options either, until they made a federal case of the issue and sued the city of San Francisco, which runs the 1,065-bed facility.
Experts say their class action suit, one of the first of its kind in the country, may mark the beginning of a whole new movement.
In 1999 the U.S. Supreme Court reinforced disability rights laws, ruling that if a disabled person prefers to live in the community, and care services would cost the same or less than a nursing home, restricting him to an institution is isolating and discriminatory.
Now older Americans have begun to use these disability laws to rejoin the world. Federal figures show, conservatively, that at least 20 percent of the nursing home population in this country wants to go back into the community. Moreover, studies have shown home and community services are generally less expensive than nursing home care.
Laguna Honda costs are about $350 a day per person—about $130,000 a year. In a 2003 report, the U.S. Justice Department's Civil Rights Division estimated that for the price of two beds in Laguna Honda for one year, five people could be served in the community with full support.
| Jesse Fitchett enjoyed being on his own the last two years of his life. (Photo by Olivier Laude) |
The Laguna Honda suit, filed in 2000, was settled just three months ago. But Fitchett was a plaintiff in the suit, and the city expedited his release in 2002. A single man with no family to care for him and no money to pay for private services, he was sent to Laguna Honda in 1996 after a stroke, and remained there for six years. "I told them I wanted to leave," he said. "I said it again and again."
Once he was out, Fitchett took satisfaction from the small pleasures of his new life. For more than two years he navigated the streets of San Francisco in an electric wheelchair, window shopping in tony Union Square or mingling with the tourists enjoying the bay and the flash and color of the shops along Fisherman's Wharf. "I like to go to the wharf and watch the people," he said in an April interview. "Sometimes I have a hot dog and then I just sit there and turn my face up to the sun."
Fitchett died in May of a chronic vascular condition. Those who knew him celebrated his life and how it ended where he wanted it to end—living in his own home. "Jesse loved life outside the nursing home," says his case manager, Alma Dunstan-McDaniel. "He loved the freedom and the people—the whole outside world."
'WE WANT OPTIONS'
Elissa Gershon, an attorney with Protection & Advocacy Inc., recalled Laguna Honda residents in the lawsuit saying, "We want options, we want alternatives to this home."
The case also broke new ground by setting up a system for assessing the wishes of nursing home residents. "It may seem very basic," says Gershon, who represented plaintiffs, "but to ask these older people what they want—that's very novel."
This sparkling, progressive City by the Bay was a birthplace of the independent-living movement. Private groups here have developed a rich array of community services and programs for the old and disabled. But it still took attorneys from half a dozen disability and advocacy groups, including AARP, four years to get the city to agree to give Laguna Honda residents the help they would need to move out.
The rebellion broke out, oddly enough, after city voters approved a $400 million plan to rebuild the sprawling, Spanish-style nursing home, replacing it with a new 1,200-bed facility.
Despite its reputation for quality care, Laguna Honda is a bleak institution that dates to 1866. Its Florence Nightingale-style design includes anachronistic open wards, where beds are lined up in rows. The only privacy is a thin curtain hanging from a metal ring above each bed. Noise bounces off high walls and echoes down long corridors.
"When voters overwhelmingly approved the money for a new nursing home, they thought they were doing the right thing," says Marie Jobling, director of Planning for Elders in the Central City, an advocacy group. But in their lawsuit, residents said what they wanted more than a state-of-the-art nursing home was a chance to go back out into the world.
Laguna Honda houses low-income residents, and Medicaid, the federal-state health care program, pays their bills. But many middle-class Americans who need long-term care eventually exhaust their own savings and, like residents in Laguna Honda, become Medicaid patients limited to Medicaid choices. Even though most people prefer to stay in their own homes, Medicaid still spends 70 percent of its long-term care dollars on nursing homes and only 30 percent on alternative programs.
As part of the settlement, the city in March set up an independent assessment agency that will ask current and future Laguna Honda residents if they wish to live in the community. If the patient chooses that option and is judged capable, the agency will arrange all the necessary services.
INSIDE THE WARD
Bill Phillips sits on his bed in Laguna Honda's fourth-floor ward, which feels more like a bus station waiting room than a residence: One man is sleeping, another watching TV and two others are arguing. "Privacy? We don't have any," says Phillips, a 62-year-old former Amtrak manager who is now being assessed for release.
He stares out his window at a view of the wall of another wing of the home. "Quality of life? I sit in a wheelchair, and I smoke." The banks of fluorescent lights blink on at 6 in the morning and go off at 9 at night, and "that's pretty much my day," he says.
Phillips, who has a severe hip problem, isn't interested in the home's bingo games and pottery classes. He says when he leaves Laguna Honda he wants to get a dog, go to the park, take in a movie. Does Phillips think others, like him, would like to leave? "Yeah, it's like asking that question at San Quentin," he says.
One woman in Laguna Honda—who was blind but so independent she routinely took public transportation to visit friends—was repeatedly told the nursing home was her only option. When she wrote to then-Mayor Willie Brown, he admonished her to remember that "a change in attitude can make all the difference."
V. Elizabeth Gray, a registered nurse chosen to direct the city's new assessment program, says, given the appropriate services most people can live outside an institution. "Can we place everyone on the outside? Probably not," she says. "But I think we can develop the whole range of services we need to place many."
LIFE ON THE OUTSIDE
The city did move Jack Joyner back into the community. After a stroke, he spent three years in Laguna Honda, "even though," he says with a laugh, "I always tried to stay away from the hospital and jail."
Now Joyner, a Korean War veteran, lives in a new subsidized apartment on the edge of the gritty Tenderloin section of the city. "I thought life was over for me," says Joyner, a beaming bear of a man. "I said, 'Jack, what in the world are you going to do?' But all that's changed now."
With a sweep of his arm he gestures to the tiny, spartan apartment. "Look at me," he says, leaning forward in his wheelchair, "look at what I got now. Life is just splendid."
A case manager monitors his care and arranges to get him to clinic appointments and adult health day care. Home aide Loretta Savoy cooks his meals, bathes him every morning and returns to help him to bed at night. "This lady here is the best cook," he says. "Good food and good people make you feel like life's worth living."
America's whole long-term care system has a built-in bias toward nursing homes. It wasn't until 1981 that the federal government allowed states to begin to develop alternative care for the old and the disabled.
"Until we shift more Medicaid money to community programs," says Elder Planning's Jobling, "we will wind up putting people in nursing homes when they really don't need or want that kind of expensive care."
AARP analyst John Luehrs says, "Some states, such as Oregon and Washington, have made helping people leave nursing homes part of their reforms. But we need to move all of Medicaid in that direction."
Many people who qualify for a nursing home fully paid for by Medicaid would rather remain on waiting lists for Medicaid's home and community programs, even doing without the care they need. Indiana, for example, has about 15,000 empty nursing home beds and more than 30,000 people wait-listed for home and community care services. "People would rather be No. 30,000 on a list for community care," Luehrs says, "than go into a nursing home."
California is looking at restructuring the financing of its care programs so people have more choices, says Larry Funk, executive administrator of Laguna Honda. But he says projections show the city's aging population will need more skilled-nursing beds, not fewer. And workers have already begun clearing ground for the huge new Laguna Honda home.
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