Landmark disability rights figure Lois Curtis dies : NPR

Lois Curtis was the plaintiff in a civil rights case that gave people with disabilities and older people the right to live outside of institutions and in their own homes. Curtis died Thursday of cancer.

John Poole/NPR

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John Poole/NPR

Lois Curtis was the plaintiff in a civil rights case that gave people with disabilities and older people the right to live outside of institutions and in their own homes. Curtis died Thursday of cancer.

John Poole/NPR

Attorney Sue Jamieson was touring a grim state hospital in Georgia three decades ago when she was introduced to a young woman, Lois Curtis, who’d spent much of her teen years and early 20’s in state institutions.

“As we always say, ‘What is it you think we could do for you? I work at Legal Aid. And I’m a lawyer,'” Jamieson recalled for an oral history for her employer, the Atlanta Legal Aid Society. “And she’d say: ‘Get me out of here. Would you please get me out of here? When am I getting out of here?'”

Curtis, who had an intellectual disability and was diagnosed with mental illness, kept calling Jamieson from the hospital, asking when she could get out.

The lawsuit that Jamieson filed on behalf of Curtis and another woman – L.C. v. Olmstead – led to a landmark Supreme Court decision benefitting elderly and disabled people, and ultimately helped Curtis move out of institutional care and into her own home.

Curtis, 55, died in her own home outside of Atlanta on Thursday. The cause was pancreatic cancer.

The Supreme Court ruled in 1999, in a decision delivered by Justice Ruth Bader Ginsburg, that Curtis, her co-plaintiff Elaine Wilson and other people with disabilities had a right—under the Americans with Disabilities Act—to live in a “less restrictive setting.”

The landmark civil rights case gave disabled and elderly people a right to seek long-term care services in their own home, instead of in an institution like a nursing home or a psychiatric hospital.

Curtis “created a sea change in what our service systems look like,” says Alison Barkoff, the top federal official for aging and disability policy.

“We went from a system in 1999 that the only places that most people with disabilities and older adults could get services were in institutions like nursing homes and psychiatric hospitals, to systems that are primarily focused on supporting people with services in their own homes,” says Barkoff, the acting administrator and assistant secretary of aging at the Administration for Community Living at the U.S. Department of Health and Human Services.

After the Olmstead decision, state Medicaid budgets shifted. Today, more money goes to pay for care at home. Less government funding goes to pay for care in institutions.

Federal law makes nursing home care an entitlement for people who meet the eligibility requirements for Medicaid. Home-based care, although it is more popular and became a right under the Olmstead decision, is not an entitlement.

As a result, there are long waiting lists for care at home—at least 700,000 people waiting in some 40 states. But the Olmstead decision requires every state to move toward providing more of that care at home.

The Olmstead decision is cited in scores of lawsuits to get others out of institutional care. And its use has spread. The U.S. Department of Justice, in the Obama Administration, applied the decision’s wording that people with disabilities are entitled to live in the “less restrictive environment” to sue to end segregated work programs that pay people with disabilities a sub-minimum wage. Now parents use Olmstead to assert their children should be in integrated classrooms.

The argument behind the Olmstead decision was that when people live fully integrated 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. And there she discovered her talent as an artist—something she didn’t get to develop when she lived in state hospitals.

Curtis made pencil and pastel drawings of animals and flowers. And sometimes she drew people whose pictures she saw in magazines and books—like a serious Martin Luther King with his arms crossed or a shirtless, young Muhammad Ali.

In 2011, she was invited to the White House on the anniversary of the Olmstead decision. She presented President Barack Obama a framed picture she called “Girl in an Orange Dress.” It was one of a series of self-portraits Curtis did of herself as a young girl, because she had no photographs from the years she lived in the state psychiatric hospitals.

Curtis used her artwork to meet people, says Lee Sanders, who was first hired to help Curtis find work and then became a friend. Curtis, Sanders wrote, “created artwork as she lived: Her lines drawn without hesitation, her colors bold and saturated, her images uncomplicated and spirited.”

Curtis was very social and, with her quick smile, was gifted at making friends. They bought her art supplies and helped her sell her art work.

When Curtis died on Thursday, she was surrounded by many of those friends.

In a video she made for the National Disability Rights Network in 2020, Curtis said: “My name is Lois Curtis… I’m glad to be free.”