GUY RAZ, host:
From NPR News, this is ALL THINGS CONSIDERED. I'm Guy Raz.
ROBERT SIEGEL, host:
And I'm Robert Siegel.
Imagine this choice: you need daily care, the kind we normally associate with a nursing home. What if you could receive nursing-home-quality care at your home? Well, for many older or disabled Americans that simply isn't a choice. But an emerging federal policy says people should have the right to receive long-term care at home - it's a civil rights issue.
As Joseph Shapiro of NPR's investigative unit reports, it's a right that is still unavailable to many.
JOSEPH SHAPIRO: If you ever go to Atlanta and you visit Martin Luther King's gravesite, turn around and look across the street.
(Soundbite of conversations)
SHAPIRO: You'll see a nursing home in a red brick building. And if you look at the big plate-glass window just to the left of the front door, you may see Rosa Hendrix in her wheelchair looking out at you. Every day, she sits at the window and watches the visitors paying their respects at Martin Luther King's grave.
How do you spend your days here? What do you do?
Ms. ROSA HENDRIX: I get up in the morning. Eat my breakfast. Take a shower. And make my bed and all that, and sit in this chair all day. I look out the window.
(Soundbite of laughter)
Ms. HENDRIX: At least it gives you something else to look at.
SHAPIRO: Hendrix is 87. She's lived at this nursing home for five years. No one's ever taken her across the street to visit the civil rights leader's grave. She'd like to go, but mostly she wants to get out of this nursing home.
Most people think that people who live in a nursing home are too sick to live at home. But there are many people with the same disabilities you'd find in a nursing home who do live in their own homes, with a little help from family or aides.
Now, a growing body of law and federal policy says that when government pays for someone's care in a nursing home, that person should have the choice to get their care at home, that it's a civil rights issue.
Ms. SUE JAMIESON (Attorney, Atlanta Legal Aid Society): People with disabilities are segregated just as African-Americans were segregated.
SHAPIRO: Sue Jamieson, of the Atlanta Legal Aid Society, is the attorney for Rosa Hendrix.
Ms. JAMIESON: And this is a perfect example of segregation where we're sitting here today because Ms. Hendrix is in a wheelchair and had a little trouble with her legs and therefore had some disabilities, she's being segregated, which is a violation of her civil rights under the Americans with Disabilities Act.
SHAPIRO: The Americans with Disabilities Act, or the ADA, is a 20-year-old law that bans discrimination on the basis of disability. Eleven years ago, the U.S. Supreme Court ruled in that people who live in institutions, like state hospitals and nursing homes, but could live successfully on their own, have a civil right under the ADA to get their care at home.
Sue Jamieson was the attorney who brought that landmark case. Since then, there's been a federal policy, it's included in the recent health care overhaul that says: States need to spend more money on Medicaid programs for people to get their long-term care at home.
Yet these national policies have amounted to little more than empty promises for people like Rosa Hendrix. So she meets with Sue Jamieson, her legal aid attorney, to figure out how to use civil rights law to get out.
Ms. JAMIESON: It's so frustrating because you don't have very many disabilities. People with a lot more serious disabilities are living in the community...
Ms. HENDRIX: I know that.
Ms. JAMIESON: ...and people who can't take a shower, and can't dress themselves, and can't do all the things you can do.
SHAPIRO: Here's what Hendrix and Jamieson are asking the state of Georgia: Help Hendrix find a subsidized apartment. Her Social Security check could help pay for it. Then take the money the state is paying for this nursing home and use some of it instead to pay for an aide to come in, maybe several hours a day, to help Hendrix keep her house clean and to do the grocery shopping.
Ms. JAMIESON: It makes me sad that you're stuck in here.
Ms. HENDRIX: Mm-hmm.
Ms. JAMIESON: Yeah, easy for me to say. I'm not the one stuck in here.
Ms. HENDRIX: Yeah, I'm stuck.
(Soundbite of laughter)
SHAPIRO: State officials say they don't disagree in principle. But there's a shortage of wheelchair-accessible apartments. And there are thousands of people ahead of Hendrix on the waiting list. Across the country, it's the same story for that kind of in-home care.
NPR's investigative unit made a Freedom of Information Act request and obtained unpublished data on every nursing home in America. Our exclusive analysis shows that who lives in the nursing home and how disabled they are varies from state to state.
In Illinois, for example, 20 percent of people in nursing homes can walk by themselves, but fewer than five percent can in Hawaii and South Carolina. In Illinois and Oklahoma, some 30 percent can get out of bed by themselves, but it's fewer than three percent in Hawaii and Maine.
Five years ago in Georgia, Rosa Hendrix fell and hurt her leg. She went to another nursing home for therapy. She was told it would be for a short-time stay.
Ms. HENDRIX: That's what I was told. They say you can do therapy. And I know therapy is not a - I don't think it's a lifetime situation. But anyway, they said that when you get better then you can go home.
SHAPIRO: But the Social Security check she relied upon to pay the rent on that apartment was diverted to pay for her nursing home care. She lost her apartment and suddenly had no home to go back to. Nor did she have family who could help her.
Mr. ALAN WEIL (Executive Director, National Academy for State Health Policy): That's the typical story.
SHAPIRO: Alan Weil runs the National Academy for State Health Policy, a think tank for state officials.
Mr. WEIL: Once you're in a nursing home, it's hard to get out.
SHAPIRO: All the supports you need - someone to help you get out of bed, someone to cook for you - already exist in a nursing home.
Mr. WEIL: You become reliant upon the services that are available that you didn't have at home: cooking, getting out of bed in the morning, getting dressed. Without those supports, you can't live at home. And lining up the kind of help you need to get those supports is very hard.
SHAPIRO: States are supposed to create programs to help with that hard work of moving home, and to get people with mild and moderate disabilities out of nursing homes. But it's not easy. A lot of state Medicaid directors get nervous about the idea that living at home is now a civil right.
(Soundbite of conversations)
Ms. CAROL STECKEL (Former Director, National Association of State Medicaid Directors): Where does the state responsibility start and where does the individual responsibility start?
Carol Steckel just left positions as the Medicaid director in Alabama and as the head of the National Association of State Medicaid Directors. That group met last month in a hotel outside of Washington, D.C.
Steckel noted lots of reasons states are reluctant to expand home-based care. How do you make sure people get good care at home? It's easy to send an inspector into a nursing home. It's harder to check on hundreds of individuals in their own homes.
And then there's the money question. It's a big problem for states facing all-time-high budget deficits.
Ms. STECKEL: We've got people asking us to do 24/7 at-home care, which means that we'll be paying $500,000 for one individual. And then you have to debate, as a society, is that what we want to do versus taking that $500,000 and spending it on prenatal care for 10,000 women? I mean, it's a societal question. It is a conundrum, almost.
SHAPIRO: Only in the rarest of cases would it ever cost $500,000 a year. Multiple studies have shown that over the long run, home-based care is cheaper: that three people can get care at home for the same cost of one in a nursing home.
When the Supreme Court established a civil right to home-based care, it specified that it wasn't an unlimited responsibility for states. It had to be something they could do within existing budgets.
Over the past decade, states have steadily increased spending on home-based care, but not nearly enough to meet the need. The number of people on waiting lists has more than doubled, and there are now 400,000 people across the country waiting to get home-based care. People like Rosa Hendrix, who's trying to get out of that nursing home in Atlanta.
Ms. HENDRIX: I'd be all right if they'd get me out of here.
(Soundbite of laughter)
Ms. HENDRIX: 'Cause I just don't need to be - in fact, I don't need to be in any place like this. I need to be out on my own.
SHAPIRO: Tomorrow night, we'll look at the mixed record of the federal government to enforce the new civil right to live at home.
Joseph Shapiro, NPR News.
SIEGEL: And you can take an exclusive look at independence rates among those living in the nation's nursing homes at NPR.org.