Care at home is a civil right for people with disabilities

From Joe Shapiro at NPR:

If you ever visit Martin Luther King Jr.'s gravesite in Atlanta, turn around and look across the street at the nursing home in a red brick building. If you look through a big plate-glass window to the left of the front door, you may just 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 the civil rights leader's grave. But Hendrix, 87, is fighting her own civil rights battle: to continue her life in her own home.

There's been a quiet revolution in the way the elderly and young people with disabilities get long-term health care. A new legal right has emerged for people in the Medicaid program to get that care at home, not in a nursing home.

States, slowly, have started spending more on this "home- and community-based care." But there are barriers to change: Federal policies are contradictory, and states face record budget deficits. As a result, for many in nursing homes — or trying to avoid entering one — this means the promise to live at home remains an empty promise.

Hendrix has lived at this nursing home for five years. She says no one's ever taken her across the street to visit the grave. She'd like to go, but she'd rather just get out of the nursing home.

"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," she says. "I look out the window. Laugh. At least it gives you something else to look at."

Many people believe that nursing home residents are too sick to live at home. Yet there are many people who have the same disabilities found in nursing homes, who are able to live in their own homes with assistance from family or aides.

There's a growing body of law and federal policy that states when the government pays for someone's care in a nursing home, that person should have the choice to get his care at home. That it's a civil rights issue.

NPR's Investigative Unit looked at this emerging civil right to live at home and found that although it's been established in law and federal policy, the chance to live at home remains an empty promise for many people like Hendrix. States are slow to create new programs. Washington's enforcement record is spotty. And there are often contradictory federal and state policies about how to pay for long-term care.

"People with disabilities are segregated just as African-Americans were segregated," says Sue Jamieson (pictured), of the Atlanta Legal Aid Society, who is also Hendrix's attorney.

"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."

The Americans with Disabilities Act — 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 Olmstead v. L.C. 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.

Since then, federal policy was updated in the recent health care overhaul, which says that states need to spend more money on Medicaid programs for people to receive their long-term care at home.

But federal law requires states to pay for nursing homes, while community-based care programs are optional. So as states face record budget gaps, they only slowly add, or even cut, programs designed to help elderly and disabled people live at home.

Five years ago, Rosa Hendrix fell and hurt her leg. She was sent to a nursing home for therapy and was told it would only be a short-time stay.

"[They s]aid, 'You could do therapy,' and I know therapy's not a, I don't think it's a lifetime situation," Hendrix says. "But anyway, they said ... 'when you get better then you can go home.' "

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.

"That's the typical story," says Alan Weil, who runs the National Academy for State Health Policy, a think tank for state officials. "Once you're in a nursing home, it's hard to get out."

All the supports you need — someone to help you get out of bed, someone to cook for you — already exist in a nursing home, he says. "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, getting what you need. 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."

Hendrix is hoping Jamieson, who was also the attorney who brought the landmark Olmstead Supreme Court case, can help her move out of the nursing home.

Recently, Jamieson sat on the small bed in the room Hendrix shares with another woman. The beds are separated by a faded curtain, and the fluorescent light reflects off a dull linoleum floor. All of Hendrix's possessions are in this room: several items of clothing — the ones that haven't been stolen — and a small TV with faded color that Hendrix turns on with a remote control held together by rubber bands.

"It's so frustrating because you don't have very many disabilities," Jamieson told Hendrix. "People with a lot more serious disabilities are living in the community."

"I know that," Hendrix replied.

"And people who can't take a shower and can't dress themselves and can't do all the things you can do," Jamieson said, "are living in the community. So it makes me sad that you're stuck in here."

"Yeah, I'm sad to be," says Hendrix. "Yes, I'm stuck."

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 her care in the nursing home and use some of it to instead pay for an aide to come in, maybe several hours a day, to help Hendrix keep her house clean and do the grocery shopping.

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 a waiting list. There are hundreds of thousands of people across the country waiting for that kind of in-home care.

In October, Georgia avoided going to trial with the U.S. Department of Justice over what the federal government said was the state’s failure to live up to the terms of the Supreme Court's 1999 Olmstead decision. So state officials agreed to spend $77 million over the next two years to set up new programs to help people with mental illness and intellectual disabilities get care in their own homes. It's expected that several hundred, or even a few thousand, will leave state hospitals as a result.

The decision does not apply directly to people, like Hendrix, who live in nursing homes. But Bill Janes, the official in the Georgia governor's office responsible for implementing the agreement, says the creation of an infrastructure of new housing, case managers and in-home health aides for people in state hospitals with mental illness and intellectual disabilities could eventually make it easier for people in nursing homes to find community-based care, too. "It's absolutely a huge step forward," he said.

An NPR analysis of unpublished data on every nursing home in America shows that nursing home residents — and how disabled they are — vary from state to state.

For example, according to this exclusive data obtained by NPR's Investigative Unit via a Freedom of Information Act request:

-- In Illinois, almost 21 percent of people in nursing homes can walk by themselves, but fewer than 5 percent can in Hawaii and South Carolina.
Also in Illinois, almost 12 percent of nursing home residents can bathe themselves without assistance, but in Iowa and South Dakota, just 1 percent can.

-- In North Dakota, 60 percent can feed themselves without assistance, but in Utah fewer than 30 percent can.

-- In Illinois, nearly 27 percent and in Oklahoma more than 25 percent of residents can use the toilet without assistance. But in South Carolina and Hawaii, fewer than 3 percent can.

-- In Georgia, where Rosa Hendrix is fighting her case, fewer than 3 percent can bathe by themselves without assistance; just under 9 percent can dress by themselves without assistance; 17 percent can get in and out of bed by themselves; just under 14 percent can use the toilet by themselves; nearly 9 percent can walk by themselves; and 40 percent can eat without assistance.

The NPR data don't show why there are such discrepancies. But other numbers offer clues. Illinois, for example, has the highest percentage of younger people in nursing homes, and many are there because they have a mental illness. Illinois is also among states that spend a large percentage of their Medicaid long-term-care dollars on nursing home care and little on what's called home- and community-based care. Two states that spend the most on home-based care — Washington and Oregon — consistently score low on the number of nursing home residents who can do things like eating and bathing without any assistance. That suggests that more independent people may be using the alternatives for community-based care.

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. Many state Medicaid directors get nervous about the idea that living at home is now a civil right. "Where does the state responsibility start and where does the individual responsibility start?" asks Carol Steckel, who until last month was a Medicaid director in Alabama and as the head of the National Association of State Medicaid Directors.

At a meeting of state Medicaid directors, in a hotel outside Washington, D.C., last month, Steckel noted many reasons states are reluctant to expand home-based care. How do you make sure people get good care at home? It's easy, she says, 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.

"We've got people asking us to do 24/7 at-home care," she says, "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's a conundrum almost."

Only in the rarest of cases would it ever cost $500,000. Multiple studies have shown that over the long run, home-based care is cheaper: One study by the AARP Public Policy Institute found that nearly 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 into home-based care.

People like Hendrix, who is trying to get out of that nursing home in Atlanta. "I'd be all right if they'd get me out of here," she says with a rueful laugh. "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."