A New Civil Right Looks For Stronger Enforcement

Lois Curtis shows off the drawers in her bedroom. "I got this. I got this," she says opening one drawer then closing it quickly and opening the next one. "I got a lot of stuff in here." There's a pocketbook in one. Two baby dolls and a couple of pencils for drawing in another.

Curtis, who has a quick and winning smile, is 59 now. But from the time she was 15 until she was 45, she often didn't have drawers or even her own room. She lived in state psychiatric hospitals and other institutions for people, like her, with mental illness and intellectual disabilities.

Today she lives in what's called a "host home" outside Atlanta. She shares a house — with sparkling crystal lamps and plastic covers on white couches — with the woman who owns it, who also supervises Curtis and makes her meals.

Curtis has surprised a lot of people who wondered how she'd ever make it once she got out of those state institutions: She has prospered. She's very social and good at making friends who are devoted to her.

She also discovered a hidden talent for art. She makes brightly colored pastels and pencil and crayon drawings. Her friends buy art supplies for her and even set up a website to sell her artwork.

Curtis shows off some of her drawings of flowers, animals and people — some of them famous.

John Poole/NPR

Lois Curtis is an avid drawer and creates many sketches throughout her day.

"This is Martin Luther King," she says. "He's a preacher." It's from a photograph of King, his arms crossed, his look serious. Curtis knows some of King's story. She thinks the man she painted might have been a president and she knows that we celebrate the civil rights leader's birthday.

Curtis, too, has made important civil rights history. She was the lead plaintiff in Olmstead v. L.C., a U.S. Supreme Court case, which established that a person with a disability has a civil right under the Americans with Disability Act to live in the most integrated setting. That is: at home, instead of a state hospital or nursing home.

An NPR investigation has found problems with federal enforcement since the ruling in 1999. Data obtained from the U.S. Department of Health and Human Services and its Office for Civil Rights, via a Freedom of Information Act request, showed a flurry of filings made immediately after the initial court decision. It also showed that Washington often sided with the people making the complaints. But that trend was short lived.

Home Or Nursing Home: America's Empty Promise To Give Elderly, Disabled A Choice

About This Series: 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.

Care At Home: A New Civil Right

New federal policies are giving people who need long-term care the right to receive it at home.

Families Fight To Care For Disabled Kids At Home

NPR INVESTIGATION: States are caught between helping families and dealing with Medicaid costs.

NPR News Investigation: Home Or Nursing HomeDec. 3, 2010

These findings didn't surprise Sue Jamieson, an Atlanta Legal Aid Society attorney who brought the Olmstead case.

"Shortly after the case," she said, "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."

The number of complaints peaked just as President George W. Bush came into office in 2000. There were 165 filed that fiscal year, according to the numbers collected by NPR.

"And then we noticed that the complaints were just basically sitting in the OCR office, and we would not hear any response at all," Jamieson said.

By 2008, the number of complaints was down 95 percent. Only seven were filed that year. Jamieson says people so rarely got a response, they stopped trying.

This past July, on the 20th anniversary of the Americans with Disability Act, President Obama, speaking to several hundred disability leaders on the East Lawn of the White House, pledged that his administration would take a vigorous stand to enforce the civil rights protections that resulted from the Olmstead ruling, which he called "a decision that declared the involuntary institutional isolation of people with disabilities unlawful discrimination under the ADA."

A Case Of Mistaken Diagnosis

At a noisy nursing home near Atlanta, Jamieson has another client, Delores Smith. Jamieson filed a complaint with the U.S. Department of Health and Human Services' Office of Civil Rights because the state was not providing proper services to the 78-year-old Smith, who was placed in the home after suffering a stroke.

"I'm in jail," Smith said. "I have committed no, no crime." She also said she does not want to die in the nursing home.

Both Smith and Jamieson believe she could live in her own apartment — if the state would help her find one and pay for aides who could help dress, bathe, cook, clean and get Smith around the house. But her doctor believes she needs something more like a small-care home, where she'd get round-the-clock supervision.

Joseph Shapiro/NPR

Delores Smith receives help from her attorney Sue Jamieson. Smith has been waiting for 10 years after filing a complaint to be moved from a nursing facility to her own home.

Smith filed her complaint with the Office for Civil Rights in Washington more than 10 years ago. She waited and waited. Finally, a little more than a year ago, she received a letter. The office was closing her case — it mistakenly thought she had a mental illness or disability. As a result, Smith qualified for a different program.

As the new civil rights director at the Department of Health and Human Services, Georgina Verdugo said she wants her office to do more and to hire more staff to take on these cases. "Unfortunately, because of the number of complaints we get and because the process was inconsistent in the past, we need to hear from people," she said. "We're happy to revisit these, and there have been times when we've reopened the investigations, because we want to make sure everyone is getting their fair day with the complaint process."

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 little progress by state officials since. The federal civil rights office is pushing Georgia harder to get Smith home.

A 'Landmark Settlement In An Olmstead Case'

But one federal agency has recently become more aggressive. Last month the Department of Justice settled a long-running dispute with the state of Georgia. The state agreed to spend $77 million over the next two years to set up community-based care for several hundred to a few thousand people with mental illness and disabilities who now live in state institutions.

Justice Dept. Increases Efforts to Enforce Olmstead Ruling

Nation's top civil rights attorney turns his attention to care-at-home cases.

"This is the most important and landmark settlement in an Olmstead case that the department has ever reached," said Thomas Perez, 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 Olmsteadcase — that suit  Lois Curtis brought and won at the Supreme Court 11 years ago.

Among those is Elijah Reid, who lives at Georgia Regional Hospital of Atlanta, the same facility for people with psychiatric and developmental disabilities that Curtis sued to get out of in the 1990s. "I want to be living somewhere else. I would personally like to have freedom," said the soft-spoken man who has a history of mental illness, uses a wheelchair, but who has lived in small supervised-care homes until a year ago. He said he'd like to have a home again. "Home means family. Home means friends. Home means happiness. Home means joy. Home means security to me."

But it's not just in Georgia that the Justice Department has been active. In the past year, it's filed briefs and joined lawsuits in a dozen states. And Perez says there are more to come. "This work is exploding and I can talk to you about Olmstead challenges in all 50 states. That is a fact."

Perez has made these Olmstead cases a priority for Justice's civil rights division. That's a change from the past, when the Justice Department sued states to improve conditions at state institutions, but did not push states to get people out of those institutions, which was required after theOlmstead decision. Perez has hired 15 new attorneys to focus on these cases.

States have been reluctant to make the change. For one thing, it requires spending to find housing, in-home aides and case managers and build an infrastructure to make home-based care work. And states are facing historic budget deficits. According to the Center on Budget and Policy Priorities, 46 states faced budget shortfalls this year and total state deficits will hit $140 billion in the current fiscal year. Rising Medicaid costs are one of the biggest parts of that deficit.

Since the Olmstead decision, states have steadily increased the money they spend on home-based care. But it hasn't been nearly enough to keep up with the demand. There are now 400,000 people on state waiting lists across the country. That has doubled in just the past 10 years.