By age 45, she had spent 43 years in Central State Hospital – confined for life, it seemed, in Georgia’s most infamous psychiatric institution.
But in 2012, with Georgia under a court order to move people with developmental disabilities out of state hospitals, officials found her a new home. She continued to require intensive care for her disabilities. Still, for the first time, she would be part of a community.
Less than a year later, she was dead.
The woman, identified in court papers as “B.B.,” was one of 503 disabled people released from state hospitals since 2010. She also is among the 79 who died after moving into group homes and other community-based facilities – and one of an undetermined number whose deaths may have been caused, in part, by lax state oversight.
Georgia not only failed to ensure quality care, according to the U.S. Department of Justice, it disregarded the growing death toll, keeping disabled people in continued peril.
“Numerous reports, assessments and reviews developed by the state’s consultants have repeatedly identified systemic failures,” the Justice Department said recently in court documents. “The state has long been on notice of these deficiencies and recommendations of how to fix them. It has not.”
Federal authorities say the deaths show the state has not complied with a 2010 agreement in which it promised to transform services for people with developmental disabilities and severe mental illness. That agreement settled a federal investigation into reports by The Atlanta Journal-Constitution that dozens of patients in Georgia’s seven state psychiatric hospitals had died under suspicious circumstances. The federal government found that Georgia was violating the civil rights of people with physical and mental disabilities.
Now the Justice Department wants a federal judge to hold the state in contempt of court and to order measures to protect the former hospital patients. A hearing is scheduled for March 28.
State officials dispute the Justice Department’s conclusions but declined to discuss them in detail before the hearing.
“We stand by our commitment to fulfill the terms of the settlement agreement,” said Angelyn Dionysatos, a spokeswoman for the Georgia Department of Behavioral Health and Developmental Disabilities. “None of that is going to change regardless of what happens.”
In court papers, the state’s lawyers said the Justice Department has not given Georgia enough credit for its progress and has not considered the cost of its demands. The lawyers complained about “baseless accusations of ‘reckless’ conduct by the state,” which they described as an effort to expand the 2010 settlement agreement and to engage in “social policymaking.”
Georgia, they said, never agreed to provide high-quality care for people with disabilities – just to move them out of the state hospitals.
Quality care, they said in a recent filing, is “a subjective concept.”
“B.B.” entered Central State in 1969, near the end of an era in which parents commonly institutionalized children with disabilities. She was 2.
Central State, in Milledgeville, already had a notorious reputation. Doctors – some of them hired after undergoing treatment in the hospital – took money from pharmaceutical companies to test unapproved drugs on patients. Nurses sometimes performed surgery without a doctor’s supervision. As many as 12,000 patients at a time filled the hospitals wards, including those that housed only children. A newspaper photo from the 1940s showed several men in suits observing a young boy in a cage.
By 2012, “B.B.” was among the last patients at Central State, which now operates only a unit that evaluates and treats criminal defendants deemed psychologically incompetent to stand trial. “B.B.” lived in a building with several hundred other patients like her – adults with profound disabilities who were dependent on caregivers for daily living.
When the state placed her in a group home in north Georgia, “B.B.” was at “heightened risk” for choking or developing aspiration pneumonia – two of the most common causes of preventable deaths among people with developmental disabilities, court records say. She was obese, her vocal cords were paralyzed and she relied on a breathing tube, according to other documents.
At the group home, court records say, she apparently received no physical or occupational therapy that might reduce her risks of developing a life-threatening illness. And her nutrition plan, which is especially critical for people who might aspirate food into their lungs, was not up to date.
She died the morning of June 9, 2013. No autopsy was performed, but a physician recorded the cause of death as “asthma,” her death certificate shows. Among other factors that contributed to her death, the doctor listed “recurrent aspiration.”
Another patient, identified as “G.L.,” was prone to retaining fluid in his lungs, a potentially fatal condition. In 2013, according to the Justice Department, the state cited his group home for not adequately monitoring his fluid intake and weight gain. The home’s operator signed a “corrective action plan” that promised more staff training and enhanced vigilance about administering medications.
Less than nine months later, “G.L.” died. He had recently begun taking a medicine that could cause chronic fluid overload, and the home’s staff “missed the significance of (his) recent weight gain and fluid retention, and did not consider that they may have been side effects of this new medication,” the Justice Department said.
No autopsy was performed, but a consultant to the state who reviewed the death said it may have been preventable. Regardless, the Justice Department said, the state had failed to make sure the group home followed the terms of its corrective action plan and that the home’s staff had “a level of acceptable competence.”
Such breakdowns in oversight are common, reviews of death cases showed.
The Justice Department cited the case of a 58-year-old man, identified as “R.S.,” who was moved from a state hospital to a group home in December 2013. His medical records described his condition as fragile, and a state inspector who visited the group home in January 2014 found that the facility’s staff needed more training to deal with the man’s critical illness.
But neither the inspector nor the staff followed up on medical tests that “R.S.” needed. Six days after the inspector’s visit, “R.S.” died.
The lack of quality care affects not only those moved out of the state hospitals.
In the 12 months that ended last June 30, 481 residents died in state-regulated group homes and similar facilities, according to a recent report by the behavioral health department. Of those, 316 had severe mental illness and 165 were developmentally disabled. The deaths of 74 disabled people were unexpected, the report said. Among those with mental illness who died, 33 were suicides.
The Justice Department described the unexpected death of one man, identified as “A.T.,” whose caregivers neither knew his medical history nor provided the treatments he needed. A police investigation into his death raised questions, still unanswered, about the group home: officers found marijuana and pills “from an unknown source” wrapped in cash. It is not clear whether the drugs belonged to the resident or the home’s staff.
Placing people with disabilities in the community is difficult, state officials say. Georgia promised in the 2010 settlement agreement to move all developmentally disabled patients into “the most integrated setting appropriate to their needs” by July 2015. But 266 remain in state hospitals, according to court records, and the state’s lawyers recently raised the possibility they may never leave.
“Many of these individuals have extensive needs and medically complex conditions,” the lawyers said in a letter to the Justice Department, “and it is a challenge, especially in rural parts of the state, to find community providers who have expertise and experience to serve this high-risk population.”
For some, the lawyers said, “the state hospitals ultimately may be the most integrated setting appropriate to their needs.”
Advocates for people with disabilities say the state has the ability to do much more. The state, they say, licenses group homes, inspects and regulates them, and oversees the investigations of all deaths.
“There’s a lot of data in the system,” said Alison Barkoff, the director of advocacy at the Bazelon Center for Mental Health Law in Washington. “But data is useless if you don’t use it to address problems.”
Barkoff, who represents advocacy groups that monitor the state’s compliance with the 2010 settlement agreement, said the deaths don’t undermine the idea that people with disabilities should live in communities, not institutions.
“We know from other states' experiences that people with complex needs can be well supported in the community," she said. "It's not that people with disabilities shouldn't be in the community to begin with."
BY THE NUMBERS
Patients with developmental disabilities who were to be removed from state psychiatric hospitals within five years of a 2010 agreement between Georgia and the U.S. Justice Department.
People actually transferred from state hospitals to group homes and other community-based facilities by the court-approved deadline.
Former state hospital patients who died after their transfers.
People with developmental disabilities still housed in Georgia’s state psychiatric hospitals.
Sources: U.S. Justice Department, Georgia Department of Behavioral Health and Developmental Disabilities