Care At Home: A New Civil Right

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.

State-To-State Nursing Home Data Differences

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:

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."