As a toddler, Veronica Ayala loved Fridays. At 5 p.m. sharp, her mother would take her from Moody State School for Children with Cerebral Palsy for 48 hours of rest. Though Ayala’s home was just a few minutes away, doctors insisted that she spend weekdays at a facility in Galveston, Texas, so she could learn to walk.
“It was originally supposed to be six months. Then it became a year. Then it became 18 months. I basically accomplished what I was trying to accomplish there. They tried to keep me longer,” says Ayala, who was at Moody’s in the early 1970s and is now a disability rights advocate. “When someone asked me about it years later, I didn’t realize how traumatic it was. I just broke down in tears. You know? I was a kid. I didn’t understand.”
Long-term involuntary institutionalization was once common for people with disabilities, as depicted in books such as “One Flew Over the Cuckoo’s Nest.” But after two Georgia women with mental illnesses and developmental disabilities sued to be released from a state hospital, the Supreme Court ruled in 1999 that segregating people with disabilities in hospitals was discriminatory and violated the Americans with Disabilities Act.
This landmark decision, known as the Olmstead decision, heralded a shift away from institutional care for long-term services to the most integrated environment possible; treating people with disabilities not as outcasts but as members of the community who could make choices and determine their own futures. The decision is named after Tommy Olmstead, then-Commissioner of the Georgia Department of Human Resources Development and the lead defendant. Some experts call it the Brown v. Board of Education of people with disabilities because it dramatically expanded civil rights in the face of forced segregation and the denial of “separate but equal” facilities.
Darcy Robb, executive director of the Georgia Council on Developmental Disabilities, says this change was long overdue: People were disappearing. “It used to be that in our society, if someone was a ‘problem child’ or was deemed a ‘problem child,’ their rights were simply removed and they were simply sent to an institution,” Robb says. “And often times, they never got out.”
Twenty-five years after the Olmstead decision, home- and community-based services (HCBS) have become the norm rather than the exception for Medicaid recipients. Nationwide Medicaid spending on HCBS has consistently exceeded spending on institutional services, and nearly 10 million people received some form of HCBS in 2019. Most states now also have “Olmstead Plans” that outline ways to further expand community care.
But those benefits have been unevenly distributed, and disability advocates have had to sue multiple states to ensure compliance.
“It’s not like we can flip a switch and the problems go away, but it’s a signpost that this is the path we need to take,” Robb said.
The first lawsuit was filed locally in 1995 by the Atlanta Legal Aid Society on behalf of Lois Curtis, and was soon joined by Elaine Wilson. Both women asked to receive community care, and doctors found them eligible to do so. However, their respective hospitals denied their requests. They were kept behind locked doors for years, until the Legal Aid Society stepped in and represented them in Olmstead v. LC.
Susan Goyco had a front row seat to the case. Fresh out of law school, Goyco had started working at the Legal Aid Society of Atlanta under Sue Jamison, the lawyer who had shepherded the case from Georgia to the Supreme Court. In April 1999, she flew into Atlanta from Atlanta, stayed on the couch of a friend’s niece, and watched her Legal Aid colleagues present the case before nine judges.
“I remember being in awe,” said Goico, who now serves as director of the Disability Integration Project at the Legal Aid Society of Atlanta. “I sat way back in the last row of the courtroom, craning my neck to see the people who had read the decisions in law school, and I sat really straight up, trying to take it all in and see the brilliant minds of the judges at work.”
Two months later, Justice Ruth Bader Ginsburg wrote a 6-3 ruling whose effects continue to this day: If a person with a disability requests community care and it is “reasonable” for the state to provide such care, the state cannot deny such care. Under this system, care can be received in the individual’s own home, a group home, or a similar setting.
But this expansion of civil rights took time, especially in Georgia.
In 2007, the Atlanta Journal-Constitution published a series called “Hidden Shame,” which exposed frequent assaults, overcrowding, and substandard medical care for people with mental illnesses and developmental disabilities in Georgia’s state hospitals – the same hospitals named in the Olmstead case. Subsequent Department of Justice investigations led the state to make efforts to improve medical care for people with mental illnesses, but 15 years later, the state continues to face legal battles for not fully complying with Olmstead’s provisions for people with developmental disabilities.
“One step forward, two steps back is a common occurrence,” Goyko said. “As Olmsted’s home field, it was a great opportunity to hit a home run, but it didn’t happen.”
Postcard depicting Moody State School for Paralyzed Children in Galveston, Texas, John P. McGovern Historical Collection
In other states, complaints have focused on HCBS wait lists. In the 38 states with wait lists, the average wait time is three years for nearly 700,000 people, according to a 2023 KFF report. The vast majority of those on wait lists have intellectual or developmental disabilities.
Community care also has its drawbacks: Many in the disability community do not like group homes, especially those that are not covered by community care in some states because of poor conditions.
Madeline Petrone witnessed this firsthand in Georgia. She’d lived in multiple group homes and dealt with neglect, physical abuse, and a constant stream of caregivers who tried to “drug” her with unnecessary medication. She moved back in with her mother 12 years ago and has been advocating for better conditions in group homes ever since.
“I want to help people with disabilities leave group homes and, if they wish, become independent and hire caregivers,” said Petrone, 48, who has an intellectual disability and ADHD.
The Olmsted decision prevents the “accommodation” of people with disabilities in medical settings, but in recent years has expanded its scope to include the judicial and educational systems. This decision, and the ADA that preceded it, are part of a larger shift in integrating people with disabilities into society. Integration isn’t just a good thing, it saves lives, Veronica Ayala said.
Ayala’s aunt was institutionalized when she was 2 because of Down syndrome and cerebral palsy. She died in the same institution 26 years later. Ayala’s mother saw what happened to her sister and wanted to spare her daughter the same fate, so she removed her from Moody’s. Even with Olmstead, life is uncertain for Ayala. She’s married and in a loving community, but she fears that if things go wrong, she could end up in an institution again.
“Everything is fine now, but the political situation is limiting people’s rights. How can we be sure that the same won’t happen to people with disabilities?” she said.
Even if the care system wasn’t perfect, Ayala said it’s important to celebrate the Olmstead decision. She was 30 and living in Albany when Justice Ginsburg issued her decision 25 years ago. She decided to throw a lavish party with friends. She bought a bottle of Cristal champagne and partied all night long, celebrating the demise of an idea.
STAT’s coverage of disability issues is supported by grants from the Robert Wood Johnson Foundation and the Commonwealth Fund. Our financial supporters have no role in any decisions about our journalism.