STEVE INSKEEP, HOST:

Lois Curtis has died. She was at the center of a court case that forced a big change in national life. That case affirmed that older people and people with disabilities had the right to live outside of institutions, in their own homes. Here’s NPR correspondent Joseph Shapiro.

JOSEPH SHAPIRO, BYLINE: Lois Curtis is not one of those civil rights pioneers whose name gets taught in school history class.

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LOIS CURTIS: My name is Lois Curtis. Happy Black History Month. I’m glad to be free.

SHAPIRO: Curtis had spent most of her life in and out of grim state hospitals in Georgia. She had an intellectual disability and a psychiatric disability. At one state hospital, she met a lawyer – Sue Jamieson from Atlanta Legal Aid.

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SUE JAMIESON: As we always say, what is it that you think we could do for you? We – I work at Legal Aid, and I’m a lawyer. And she’d say, get me out of here. Would you please get me out of here? When am I getting out of here?

SHAPIRO: Jamieson’s lawsuit argued that people like Lois Curtis could and should get the care they needed in their own homes. That case, L.C. v. Olmstead, reached the U.S. Supreme Court. In 1999, the court ruled that under the Americans with Disabilities Act, Curtis and other people with disabilities had a constitutional right to get their care funded in a, quote, “less restrictive setting” outside of a state institution or a nursing home and to get that care in their own homes.

ALISON BARKOFF: So she created a sea change in what our service systems look like.

SHAPIRO: Alison Barkoff is the top federal official for aging and disability policy.

BARKOFF: We went from a system in 1999 that the only place that most people with disabilities and older adults could get services were in institutions like nursing homes and psychiatric hospitals.

SHAPIRO: State Medicaid budgets shifted. Today, less government funding goes to pay for care in institutions like nursing homes – more money goes to pay for care at home.

BARKOFF: To systems that are primarily focused on supporting people with services in their own homes and in their own communities.

SHAPIRO: There are still long waiting lists for care at home, but the Olmstead decision requires every state to move towards providing more and more of that care at home. The argument behind the Olmstead decision was that when people live in their communities, they live better, more fulfilling lives. Curtis proved it. She moved into a series of houses, needing help from a caregiver with things like cooking, shopping and other care. It turned out that Curtis was a talented artist, something she never got to try when she lived in the state hospital.

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CURTIS: A cat, a horse and a dog.

SHAPIRO: When I spent time with her in 2010, she showed me some of her brightly colored pastels and pencil drawings.

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CURTIS: And a goat, and a fish.

SHAPIRO: And sometimes she drew people whose pictures she saw in magazines and books.

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CURTIS: This is Martin Luther King.

SHAPIRO: That’s Martin Luther King, yeah, with his arms crossed. He looks very serious.

CURTIS: Yeah. He’s a preacher.

SHAPIRO: Curtis was very social and good at making friends. They bought her art supplies and helped her sell her artwork. Curtis died in her own home outside of Atlanta from pancreatic cancer at the age of 55. She was surrounded by many of those friends.

Joseph Shapiro, NPR News.

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