Under a settlement agreement with the U.S. Department of Justice, the Georgia Department of Behavioral Health and Developmental Disabilities agreed to move at least 150 patients per year out of state institutions for the mentally ill and disabled and into community placements. Gracewood, which houses developmentally disabled patients, was one of the institutions targeted. Parents of patients there, some of whom have been at Gracewood for decades, fear many of the patients are too fragile or don’t have the skills to cope outside its walls. The state has insisted the placements will be voluntary and appropriate.
An Independent Reviewer looked at how the state did for the first year of the agreement and found good compliance with some measures of the agreement, such as no longer admitting patients with developmental disabilities to state institutions and moving 192 patients, more than required, and providing individualized support plans for the 48 patients sampled. But the reviewers also found “unsafe practices” with at least five of the patients, according to the report. The patients were listed as “self-medicating with staff assistance” but “it was obvious to the reviewers that certain individuals were not capable of self-administering their medications,” according to the report. It fell to “unlicensed staff” to do it, in some cases crushing up the drugs and giving them in pudding or applesauce.
“These practices appeared to be in violation of the Georgia Nurse Practice Act,” the reviewers wrote. The department has since gone back to the 48 patients in the sample with the reviewer’s comments to address those issues, spokeswoman Kristie Swink said.
“A lot of what (the reviewer) recommended has been corrected or is being corrected,” she said.
The lack of such care is one reason advocates believe many Gracewood patients are not suitable for community placement. Theresa Senior, the parent of a patient at Gracewood and acting president of its Family Council, said at least two have already died in nursing homes, one in Augusta on Dec. 9 and one in Swainsboro on Dec. 15.
“We keep trying to explain to them, over and over, that these places cannot attend to our children like they should because they don’t have the resources and they don’t have the skills to do it,” she said.
The first patient who died, Edith Jean Maxwell, 64, had suffered from pneumonia at various times but what probably killed her was a stroke, said her sister, Camilla Bailey of Hartwell. Maxwell, who went to Gracewood in 1982 when family could no longer care for her, had a limited vocabulary of a few words but “she had plenty of sense to let you know what she wanted without speaking,” Bailey said.
When the move into the community was broached with the family more than a year ago, “naturally I didn’t want it because I thought Gracewood was the best place for her,” Bailey said. But after going to the home and meeting the staff, some of whom had worked with her sister at Gracewood, she felt more comfortable about it.
“They thought she would do good in the community and she did pretty good,” Bailey said. “She was real happy and they took good care of her so I had no complaints about it.”
But a fall in July, when she might have had a stroke, and bouts of pneumonia bounced her out of the home and into the hospital and then a nursing home and finally back to the hospital. But it might have been inevitable, Bailey said.
“I don’t think her moving into a home hastened her condition at all. I really don’t believe so,” she said. “I just feel like wherever she might have been that it could have ended like this.”
Her cause of death is unknown to Richmond County Coroner Grover Tuten because he was not called to investigate it. A little-known exemption in state law allows the nurse at the nursing home to sign off on the death certificates without calling the coroner, he said, something coroners have been upset about for years. In this case, however, if Maxwell was still considered a Gracewood patient, Tuten said he should have investigated.
“She was still a ward of the state,” he said. “They should have called us.”
Senior identified the other Gracewood patient as Thomas Jerry Miller, 78, who died in Swainsboro, although it is unclear in what facility. It was likely also a nursing home because neither the Emanuel County Coroner nor his deputy coroner were asked to investigate it. Miller’s family did not return numerous calls. Swink would not say if the department is investigating those deaths, citing patient privacy issues.
The nursing home loophole is disturbing to Tamie Hopp, director of government relations and advocacy for VOR, a group that advocates for the developmentally disabled.
“It’s especially alarming because nursing homes are often a placement resort for individuals leaving (state institutions),” she said. “That will become more and more relevant as the (Georgia) settlement is implemented.”
Two other deaths were listed in the Independent Reviewer’s report. In the death of someone listed just as “K.K.” the report notes an “allegation of neglect by the host home provider was substantiated.” It is unclear from the report how the other patient died. With these community placements, Hopp said, “it is tragically predictable, unfortunately.”
The reviewers also noted other serious problems with medications. More than half of those reviewed patients, 57 percent, were on psychotropic medication and about half of them consented to it but in more than half of those cases the person who signed it had a developmental disability or was the provider.
“Given the potential side effects of psychotropic medication, this was a matter of grave concern,” the reviewers wrote. Swink said the department has a council that reviews all patients on five or more psychotropic drugs to see if the use is appropriate.
Those drugs are also a concern to Hopp, who pointed to stories coming out of a similar community system in New York where there are reports of overuse of the drugs and patient deaths with little intervention by the Justice Department. Given the attention to Georgia, “its silence in regard to what is happening in New York community programs is deafening,” she said.
All of the potential problems prompted VOR to call for a moratorium on lawsuits from the Justice Department against states to continue the de-institutionalization of more patients.
“These kinds of things really concern me,” said Ann Knighton, president of VOR and a Gracewood parent.