As Rosa Hendrix puts it, she got "stuck" in a nursing home for six years. So when the 88-year-old woman was finally able to move out, she looked around her new one-bedroom apartment and had some stark things to say about what makes a home.
"A home means to me where you are not in prison. Where you don't have to have somebody to tell you what you can do, when you can do it and how you can do it," she says.
Hendrix was featured in an NPR News investigation in December 2010 that examined a federal law, which now gives people like Hendrix a civil right to receive long-term health care in their own home, instead of in a nursing home or state institution. But too often, the series found, that new civil right remains an empty promise for America's disabled and elderly.
Hendrix lived in a nursing home in Atlanta located directly across the street from Martin Luther King's gravesite. She spent her days in her wheelchair in the lobby, looking through the plate glass window and watching the tourists.
Now she lives across the street from Turner Field, where the Atlanta Braves play baseball, in a brick apartment house that's been converted from an old school building. Her new one-bedroom apartment is spacious with high ceilings. "It's beautiful," she said when she moved in late last month. "It makes you feel so much better and know that you are somebody."
Uncertainty Of Leaving A Nursing Home
An NPR analysis of unpublished federal data showed that those who live in a nursing home — and how disabled they are — vary from state to state. In Illinois, for example, 20 percent of people in nursing homes can walk by themselves, but only 5 percent can in Hawaii and South Carolina. Who lives in a nursing home, the NPR investigation found, is often determined more by state policies and whether there are adequate programs to offer alternatives to nursing homes than by the level of a person's disability.
Hendrix has minor disabilities and was long able to live on her own. But how she landed in a nursing home — and stayed there — turns out to be an all too typical story.
Six years ago after she fell and hurt her leg, she went to a nursing home for what was supposed to be a temporary stay for therapy. But the therapy took longer than first expected. Her Social Security check, which paid the rent on her subsidized apartment, was diverted to pay for the nursing home room. As a result, she lost her apartment and then had no home to go back to, nor family to help her.
Getting out of a nursing home was not easy. She grew dependent upon the services at the home, such as someone to cook for her and aides to help push her wheelchair.
But Hendrix wanted to get back into an apartment of her own. Sue Jamieson, an attorney at Atlanta Legal Aid Society, and Toni Pastore, a paralegal there, helped Hendrix sue the state of Georgia to demand her own apartment. They based their suit on the Americans with Disabilities Act, a 21-year-old law that bars discrimination on the basis of a person's disability.
For Hendrix, Jamieson argued that it'd be cheaper for the state of Georgia if the elderly woman lived in her own house. Instead of the expensive, round-the-clock help available in a nursing home, Hendrix only needed a few hours a day of help from an aide who could help her get out of bed, get dressed and help with housekeeping chores.
The state agreed in principle. But finding such a place was difficult because there is an acute shortage of subsidized, wheelchair-accessible apartments in Georgia, and across the country.
Finding Independence
It took Cheryl Laurendeau, an advocate who works to help people move out of nursing homes, to make it happen. Laurendeau, who also has a disability and uses a wheelchair, became Hendrix's peer supporter and helped her find a subsidized apartment in Atlanta.
But it wasn't quick. The first apartment they went to see was up a steep hill and had a long staircase at the entrance. They couldn't even get in. Often, something that's listed as wheelchair accessible simply isn't. "People seem to think that 2 or 3 inches of a step is accessibility," says Laurendeau. "But it's not for a wheelchair."
Once Hendrix found the apartment she wanted, a federal and state Medicaid program provided more support. Funding through the Money Follows the Person program paid for basic things that can create a costly barrier for people who want to move out of a nursing home. For Hendrix, it paid for furniture — a new bed, chairs and kitchen table — pots, pans, dishes and a few groceries.
Hendrix is learning to become independent again. But it is not automatic. On the day she moved into her apartment, Hendrix let others figure out how to arrange the furniture.
She now receives help from an aide who comes for two hours in the morning to help her get out of bed and bathe and then helps prepare breakfast. The aide returns for two hours in the evening. Dinners are provided by Meals on Wheels, a nonprofit organization that delivers meals to those in need.
For the first time in years, Hendrix says, she's optimistic about her future. "I'll feel fine now," she said as she moved in. "It's gonna get better."
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