Leaders from around the nation are celebrating the life of Lois Curtis, the Georgia disability rights icon who died this month. But the loss is also prompting advocates to face a sobering reality: too many disabled people are still waiting to access the rights that Curtis helped them win.
“We’ve come a long way, but we have a long way to go,” said Susan Walker Goico, an attorney who directs the Atlanta Legal Aid Society’s Disability Integration Project.
More than two decades have passed since Curtis helped free disabled Americans from state hospitals and other institutions.
She was one of two plaintiffs in the landmark 1999 U.S. Supreme Court decision in Olmstead v. L.C. The court found that the Americans with Disabilities Act, adopted into law in 1990, prohibits forcing disabled people to live in institutions if their needs can be met in a community setting. Curtis had cognitive and developmental disabilities and was repeatedly placed in state hospitals, starting when she was just a child. Her life changed through meeting Sue Jamieson, an attorney at Legal Aid, which filed the lawsuit against Tommy Olmstead, then Georgia’s human resources commissioner.
The decision forced states across the country to shift away from institutional models of care for people with disabilities.
Credit: HANDOUT
Credit: HANDOUT
Curtis died this month of cancer at her home in Clarkston. She was 55. As a result of Olmstead, Curtis lived in the community, got to meet President Barack Obama, and thrived as an artist.
“Olmstead is this shining civil rights decision that applies to all people with disabilities,” Goico said. “But unfortunately, and tragically, the promise of Olmstead is not reaching everybody.”
Thanks to the Olmstead case, many people with disabilities are well supported in Georgia and living in their communities like Curtis did, Goico said. Programs that use peers and creative new models that work within the criminal justice system are also making a difference, she said.
Credit: Special
Credit: Special
But those with more complicated needs often face significant barriers. Goico said some adults with disabilities languish in community hospitals because there’s nowhere else for them to go. Others cycle in and out of jail because they can’t get adequate behavioral health care and supported housing, she said. Some Georgia families have to send children to institutions out of state because Georgia doesn’t provide the services that would allow them to remain in their own communities.
“We are breaking up families because we’re not providing them with the services they’re entitled to, and that, to me, is a tragedy,” she said.
In 2010, Georgia signed a settlement agreement with the U.S. Department of Justice pledging to dramatically increase services for people with mental illnesses and intellectual disabilities. A federal investigation that found widespread failures in Georgia was conducted in response to articles in The Atlanta Journal-Constitution in 2007 that found more than 100 patients had died in state psychiatric hospitals because of neglect, abuse and substandard medical care during the previous five years.
Despite 12 years of supervision by a federal court, Georgia’s system for caring for people with mental illness and intellectual disabilities continues to fall short, according to a report issued earlier this year on Georgia’s progress.
Credit: COX
Credit: COX
In a recent investigative series, the Journal-Constitution found that Georgia fails to meet the needs of children who need mental health services.
The Georgia General Assembly is expected to consider actions next year that could improve services. Some of the state’s crisis beds have remained closed due to staffing shortages. Space in group homes has been limited because current payment rates by the state can’t attract workers during the ongoing labor shortage. Advocates are pushing Georgia to address the issue, which they say has reached a crisis point.
Thousands of families are on waiting lists to get services, and even those who finally get off the lists can’t find services because providers simply don’t have the staffing they need, said Diane Wilush, President and CEO of United Cerebral Palsy of Georgia, which provides an array of services and supports for people with intellectual and developmental disabilities, including in small group homes across Georgia.
Georgia needs to dedicate millions of additional dollars to provide the services that the Olmstead case determined disabled people should receive, Wilush said.
“The chickens have come home to roost,” Wilush said. “Our failures for all these decades of community-based supports are now shining so bright that we have to deal with it.
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