GUY RAZ, host:
From NPR News, this is ALL THINGS CONSIDERED. I'm Guy Raz.
ROBERT SIEGEL, host:
And I'm Robert Siegel.
We're reporting this month on an emerging federal policy, one that says older or disabled Americans living in state institutions and nursing homes have the right to say they want out, and to receive the care that they need at home.
The government says that's a civil right and that states ought to pay for home-based care. But NPR's investigative unit found that many states are reluctant to make that happen, and that Washington up to now has been reluctant to enforce its own policy.
Here's correspondent Joseph Shapiro.
JOSEPH SHAPIRO: Lois Curtis shows off the drawers in her bedroom.
Ms. LOIS CURTIS: I got this.
Ms. CURTIS: I got this. I got a lot of stuff in here. See...
SHAPIRO: Actually, there's not a lot of stuff in the drawers. There's a pocketbook in one. Two baby dolls in another, a couple of pencils for drawing.
Ms. CURTIS: I got this. I got that.
SHAPIRO: Lois Curtis is 59 now, but for most of the time from when she was 15 until she was 45, she didn't have drawers or her own room. She lived in state psychiatric hospitals and other institutions for people like her, with mental illness and intellectual disabilities.
Now she lives in what's called a host home outside Atlanta. She shares this house - with sparkling crystal lamps and plastic covers on white couches - with the woman who owns it. The woman supervises Curtis and makes her meals.
Lois Curtis surprised a lot of people since she got out of those state institutions. For one thing, it turned out she's a talented artist.
Ms. CURTIS: A cat. A horse. It's a dog.
SHAPIRO: She shows off some of her brightly colored pastels and pencil drawings of people, flowers and animals.
Ms. CURTIS: It's a goat. It's a fish...
SHAPIRO: Curtis has a quick and winning smile. She's very social and she's good at making lots of friends who are devoted to her. They buy art supplies for her. They set up a website to help her sell her artwork.
Ms. CURTIS: This is Martin Luther King.
SHAPIRO: That's Martin Luther King, yeah, with his arms crossed. He looks very serious.
Ms. CURTIS: Yeah. He's a preacher.
SHAPIRO: She knows some of King's story. She thinks the man she's painted might have been a president. She knows that we celebrate his birthday.
Ms. CURTIS: Martin Luther King Church.
SHAPIRO: Lois Curtis made landmark civil rights history of her own. She was the lead plaintiff in a U.S. Supreme Court case in 1999 that established a person with a disability has a civil right to live in the most integrated setting. That is, at home, instead of a state hospital or nursing home.
(Soundbite of applause)
SHAPIRO: That case was called Olmstead versus L.C.; L.C. was Lois Curtis.
President BARACK OBAMA: And to advance the right to live independently, I launched the year of community living on the 10th anniversary of the Olmstead decision.
SHAPIRO: In July, President Barack Obama talked about the civil rights protections that resulted.
President OBAMA: A decision that declared that involuntary institutional isolation of people with disabilities - unlawful discrimination under the ADA.
(Soundbite of cheering)
SHAPIRO: To several hundred disability leaders on the East Lawn of the White House, the president promised his administration will fight the discrimination that keeps someone in an institution, when they can live on their own with some help.
NPR looked at how well government has enforced these cases. We made a Freedom of Information Act request for data from the U.S. Department of Health and Human Services and its Office for Civil Rights - that's the office that takes complaints from people who say states have not done enough to get them out of state institutions and nursing homes.
We found problems with that federal enforcement.
What we found didn't surprise Atlanta Legal Aid Society attorney Sue Jamieson. She brought the Olmstead case that ended up at the Supreme Court.
Ms. SUE JAMIESON (Attorney, Legal Aid Society, Atlanta): Shortly after the case, we filed a lot of individual OCR complaints. And they were quite effective, for an individual, particularly in nursing homes. The Office for Civil Rights actually investigated and made findings, and the state would be required to serve that individual. It was very encouraging.
SHAPIRO: NPR's numbers show there was a flurry of filings right after the 1999 Court decision. And Washington often sided with the people making the complaints.
Ms. JAMIESON: But that lasted for a very short while.
SHAPIRO: The number of complaints peaked just as President George W. Bush came into office. There were 165 filed that year.
Ms. JAMIESON: And then we noticed that the complaints were just basically sitting in the OCR office, and we would not hear any response at all.
SHAPIRO: By 2008, the number of complaints was down 95 percent. Only seven were filed that year. Sue Jamieson says people so rarely got a response, they stopped trying.
She hasn't. Today, Jamieson is visiting a client at a noisy nursing home near Atlanta.
Ms. JAMIESON: The reason I filed a complaint for you, Ms. Smith, with the Office for Civil Rights, is because the state has programs but they weren't providing the services to you and you're still stuck here.
SHAPIRO: She's talking to Delores Smith. She's 78. She's had a stroke. It's hard to make out her words, but her meaning is clear.
Ms. DELORES SMITH: I'm in jail.
SHAPIRO: I'm in jail, she says.
Ms. SMITH: I have committed no crime. No crime.
SHAPIRO: I have committed no crime, she says. She said she does not want to die in the nursing home.
Smith and her attorney think she could live in her own apartment, if the state would help her find one and pay for aid several hours a day to help her dress, bathe, cook, clean and get around the house. Her doctor thinks she'd need something more, like a small care home, where she'd get round-the-clock supervision.
Smith filed a complaint with the Office for Civil Rights in Washington more than 10 years ago. She waited and waited and waited. Finally, a little over a year ago, she got a letter. The office was closing her case; it mistakenly thought she had a mental illness or mental retardation and, as a result, qualified for a different program.
Georgina Verdugo is the new director of OCR at the Department of Health and Human Services. She says she's trying to get her office to do more and she's hiring more staff to take on these cases.
Ms. GEORGINA VERDUGO (Director, OCR, Department of Health and Human Services): Unfortunately, because of the number of complaints we get and because the process was inconsistent in the past, we need to hear from people. And we're happy to revisit these. There have been times when we've reopened the investigations, because we want to make sure that everyone is getting their fair day with the complaint process.
SHAPIRO: Delores Smith's case was reopened. And the state of Georgia even approved her under a program - started by the Bush administration - to move people out of nursing homes.
Still, that approval was more than a year ago and there's been almost no change since. The federal civil rights office is pushing Georgia harder to get Delores Smith home.
But one federal agency has become newly aggressive.
(Soundbite of a news clip)
Unidentified Man: The Department of Justice says it has settled a long-running dispute with the state of Georgia. As a result, thousands of people with mental illness and mental retardation will leave state institutions.
SHAPIRO: In October, Georgia avoided going to trial with the U.S. Department of Justice, and agreed to spend $77 million over the next two years to set up community-based care, so that thousands of people with mental illness and intellectual disabilities can leave state hospitals.
Mr. THOMAS PEREZ (Assistant Attorney General, Civil Rights, U.S. Department of Justice): This is the most important and landmark settlement in an Olmstead case that the department has ever reached.
SHAPIRO: Thomas Perez is the assistant attorney general for civil rights at the U.S. Department of Justice. He said with this agreement, Georgia will now live up to its obligation from the original Olmstead case - that lawsuit Lois Curtis brought and won at the Supreme Court 11 years ago.
But it's not just in Georgia where the Justice Department has been active. In the last year, it's filed briefs and joint lawsuits in some 20 states. And Perez says there is more to come.
Mr. PEREZ: This work is exploding and I can talk to you about Olmstead challenges in all 50 states. That is a fact.
SHAPIRO: And it's a fact that more and more people are demanding home-based care from states. There are now 400,000 people on state waiting lists across the country. That's doubled in just the past 10 years.
Joseph Shapiro, NPR News.
SIEGEL: And for more on our investigative series, Home or Nursing Home, you can visit NPR.org.
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