Supreme Court outlawed segregation of disabled people 25 years ago. But change has come slowly

As a toddler, Veronica Ayala loved Fridays. At 5 o’clock sharp, her mom whisked her away from the grim Moody State School for Cerebral Palsied Children for a 48-hour reprieve. Ayala’s house was mere minutes away, but the doctors insisted that she had to live at the Galveston, Texas institution during the week so she could learn how to walk.

“It was supposed to be for six months. Then it was a year, and then it went into 18 months. I basically had achieved the goals I was there to achieve. They tried to keep me longer” but her mom removed her from Moody’s, said Ayala, who stayed there in the early 1970s and is now a disability rights advocate. “I didn’t even realize how traumatic it all was until years later when someone asked me about it, I just broke down in tears. I was a child, you know? I didn’t understand.”

Prolonged, involuntary stays in institutions used to be the norm for people with disabilities, as books like “One Flew Over The Cuckoo’s Nest” have portrayed. But after two Georgia women with mental illness and developmental disabilities sued to leave a state hospital, the Supreme Court decreed in 1999 that siloing people with disabilities in hospitals was discriminatory and a violation of the Americans with Disabilities Act.

This landmark ruling, known as the Olmstead decision, augured a shift away from institutional care for long-term services and towards the most integrated setting possible — treating people with disabilities not as outcasts but as community members who can make choices and decide their own futures. The name refers to the main defendant, Tommy Olmstead, the commissioner of the Georgia Department of Human Resources at the time. Some experts refer to it as the Brown v. Board of Education for people with disabilities because of its dramatic expansion of civil rights in the face of forced segregation and a rejection of “separate but equal” institutions.

The change was long overdue, said D’Arcy Robb, Georgia Council on Developmental Disabilities executive director. People were disappearing. “At one point in our society, if a person was a “problem” or seen as a “problem,” it was so easy for their rights to just evaporate, for them to just be sent into an institution,” said Robb. “And many times, folks never got out.”

Twenty-five years after the Olmstead decision, home and community-based services (HCBS) is the norm rather than the exception for Medicaid recipients. National Medicaid spending on HCBS routinely exceeds spending on institutional services, and nearly 10 million people received some form of HCBS in 2019. Most states now have “Olmstead plans” that sketch out how to further grow community care, too.

But those gains are unevenly distributed, and disability advocates have had to sue several states to ensure their compliance.

“It doesn’t flip a switch and make the problems go away, but it sets a beacon and says this is the way we’re going,” said Robb.

The original lawsuit was filed locally by Atlanta Legal Aid on behalf of Lois Curtis in 1995 and then soon after included Elaine Wilson. Both women had asked to receive community care, and doctors had deemed them fit to do so. But their respective hospitals denied their requests. They remained behind locked doors for years, until Legal Aid stepped in and represented them in Olmstead v. L.C.

Susan Goico had a front-row seat to the action. Fresh out of law school, Goico started working at Atlanta Legal Aid under Sue Jamison, the lawyer who shepherded the case from Georgia all the way to the Supreme Court. In April 1999, she flew up from Atlanta and crashed on a friend’s niece’s couch so she could watch her Legal Aid colleagues present their case to the nine justices.

“I remember feeling so much awe,” said Goico, now the director of the Atlanta Legal Aid Society’s Disability Integration Project. “I was far back in one of the last rows of the gallery, craning my neck to see these people who I had read decisions by in law school and really sitting up straight to try and take it all in and see the brilliant minds of these justices at work.”

Two months later, Justice Ruth Bader Ginsberg announced a 6-3 decision whose ramifications are still being felt today: If a disabled person wants to receive community care, and it’s “reasonable” for the state to provide such care, they cannot be denied such care. In this system, the care can occur at home or in group homes or similar settings.

But this expansion of civil rights took time — especially in Georgia.

In 2007, the Atlanta Journal Constitution published “Hidden Shame,” a series that exposed frequent assaults, overcrowding and substandard care for people with mental illness and developmental disabilities in Georgia’s state hospitals — the same hospitals named in the Olmstead case. A subsequent DOJ investigation spurred the state into improving care for people with mental illnesses, but 15 years later, there is still an ongoing legal battle because the state is not doing enough to comply with Olmstead for people with developmental disabilities.

“It’s often one step forward and two steps back,” said Goico. “Home of Olmstead, what a good opportunity to knock it out of the park, but that’s not what happened.”

Complaints in other states often revolve around HCBS waiting lists. For the 38 states with a list, the average waiting period is three years for nearly 700,000 people, according to a 2023 KFF report. The vast majority of people waiting have intellectual or developmental disabilities.

Community care has its warts, too. Many people in the disability community are not fond of group homes, in particular, especially the ones that aren’t included under the auspices of community care in some states because of their poor conditions.

Madeline Petrone has witnessed this first-hand in Georgia. She’s lived in multiple group homes and has dealt with neglect, physical abuse and a rotating cast of caregivers who tried to “dope her up” with unnecessary medication. She moved back in with her mother 12 years ago and has been advocating for better group home conditions ever since.

“I want to help people with disabilities get out of group homes and live on their own and have their own caregivers, if they want that,” said Petrone, 48, who has an intellectual disability and ADHD.

Olmstead deters the “warehousing” of disabled people in health settings, but it has expanded its scope in recent years to include the justice and education systems. The decision, and the ADA that preceded it, are part of a larger shift integrating people with disabilities into society. Integration is not just a nice thing to have — it saves lives, said Veronica Ayala.

Ayala’s aunt was put in an institution when she was two because she had Down syndrome and cerebral palsy. She died in that same institution, 26 years later. Ayala’s mom saw what happened to her sister and wanted to ensure her daughter didn’t meet the same fate. So she took her out of Moody’s. Even with Olmstead, life feels precarious for Ayala. She’s married and has a loving community but doesn’t know if, given the wrong circumstances, she could end up back in an institution.

“Right now, everything’s fine, but the way things are politically, people are rolling back people’s rights. How do I know that that won’t happen to people with disabilities?” she said.

Even if the care system isn’t perfect, Ayala says it is important to celebrate Olmstead. Twenty-five years ago, she was 30 years old and living in Albany when Justice Ginsburg announced the decision. She decided to have a swanky party with friends. She bought a bottle of Cristal champagne and partied into the night, celebrating the death of an idea.

STAT’s coverage of disability issues is supported by grants from Robert Wood Johnson Foundation and The Commonwealth Fund. Our financial supporters are not involved in any decisions about our journalism.