In Georgia, parents of developmentally disabled worry over community placements

Gracewood parents brace for move out

Theresa Senior pulls into her driveway then opens the backseat door, where a pair of little black boots appear, and Terral Senior hops out onto the driveway.

That’s something Terral, 57, couldn’t do more than two decades ago before she went to the Gracewood wing of East Central Hospital. Her mother fears she will regress and might be harmed if she is ever forced to leave the facility for a group home in the community, as the Georgia Department of Behavioral Health and Developmental Disabilities apparently plans to do.

The state “is telling us nonsensical things,” Senior said. “Telling us things they are going to have, but they don’t have any of them.”

But it is not clear that the state has a choice and when it begins to transfer patients again, it will begin with the Augusta area, which worries parents at Gracewood.

Georgia is under a 2010 settlement agreement with the U.S. Department of Justice after the federal government sued over the conditions in the state hospitals, part of a larger and more aggressive effort to enforce the U.S. Supreme Court’s Olmstead decision. The settlement agreement required the state to move out 150 developmentally disabled patients per year into community placement.

But that movement was halted in 2013 after a rash of deaths and a determination by the Independent Reviewer that the state was not meeting some of the standards for the care of those patients. But the deaths continued last year.

In 2013, 500 patients died in community care.

In 2014, the number was 498, making the total nearly 1,000 deaths in two years. There were 82 unexpected deaths among patients in community placements in 2013 and 141 in 2014, according to the department’s Quality Management Reports.

Of the 82 deaths in 2013, the majority of unexpected deaths were among developmentally disabled patients including 12-year-old Christen Gordon, who died in a host home in August 2013 under circumstances that are still unclear to her family.

Almost 1,000 deaths

After Christen’s death, The Augusta Chronicle filed an Open Records Act request for those unexpected deaths among the developmentally disabled but received only 28 heavily redacted records, with no personal information and most medical terms blacked out. Department spokesman Chris Bailey said for some reason only records for those developmentally disabled covered by the settlement were sent.

Of those 28, The Chronicle was able to identify 24 patients and found family members for the majority of them. But most of the families did not respond to calls or e-mails, and of those that did most said they were satisfied with the care their family member received, even if there were clearly mistakes made in their care.

Some were like Betty Tarpley of Macon, who was not sure how things might have been different for her son, Clifford. He had been at Central State Hospital in Milledgeville and was moved to group homes beginning in 2001.

Clifford had been a smoker and “coughed for 39 years,” she said. His coughing grew much worse in 2013 and when he was hospitalized in Atlanta in August, doctors discovered a massive cancer that had already spread between his lungs and heart, Tarpley said. He had been hospitalized twice before for what was thought to be pneumonia and a heart attack, “but they didn’t find it until the last” hospitalization, she said.

“When he had the heart attack (the year before), it looked like to me they would have found the cancer.” Later, there was little that could be done, and he died in the hospital on Aug. 23, 2013, at age 59.

Tarpley was surprised when she learned his unexpected death was one among 82 that year.

“Oh my goodness,” she said. “That’s a lot of folks.”

Recognizing issues

As a response to concerns about the deaths, “we have put in place a contract with an outside agency now to review all deaths going forward, to do mortality review, so we can look at systemic trends and identify, if there are concerns, how do we remediate those trends,” said Dan Howell, director of developmental disabilities for the department.

Having been brought in after the rash of deaths and the discovery of other problems, Howell said Commissioner Frank Berry “made a very wise and courageous decision in stopping transitions, realizing that the infrastructure, not in every place but in some instances, in the state of Georgia wasn’t there nor was the capacity there to support individuals with great medical complexities or great behavioral issues who have intellectual or developmental disabilities.”

Before the state begins those community placements again, it is going to ensure those patients are going to the right place, he said.

“We want to make sure the health and safety needs are being met,” Howell said. “Assuring that we have a community at large that is stable is incredibly important. Until we believe that that’s the case we’re not going to be transitioning anybody.”

And that means individualized programs, he said.

“You can’t start with the system as a whole,” Howell said. “You have to start with one. So we go individual by individual and provider by provider to make sure the (plan of service) is lining up with what the provider is doing.”

That has been a chief criticism of the independent reviewer – that the community providers were failing to meet those service plans and giving patients real interactions with the community outside of the home. The state realizes that is important, Howell said.

“At the end of the day, we want to ensure that people are safe and healthy,” he said. “And the second piece of that then is we want to make sure they have a life outside of where they are today. Their health and safety isn’t compromised and that they have an opportunity to do things that you and I might want to do in our lives.”

Addressing the problem

But those patients are getting important interactions now at Gracewood, Senior said, pointing to a list of activities that run the gamut from an annual Christmas parade and fashion shows to Special Olympics, a miniature golf tournament, trips to the fair, summer camp, a fishing derby and harvest festival.

“If they’re in a group home, they don’t get to do anything,” she said. “We’ve been to group homes. One place we went, they had a whole group of kids and they were putting nuts and bolts together, then they’d take them apart, then they’d put them back together. They were so good at it, they could do it without looking.”

The state also acknowledges it will need to address staff training and that includes every level of staff member, Howell said.

“It is not just the managers, it’s with the people at 3 in the morning on a Thursday night,” he said. “And to ensure that those individuals know your loved one as well as anybody else would.”

Part of that is also a function of the way the system is set up, Howell said.

“Staff training is constantly an issue. Not specifically because things have been wrong, but because in inverse proportions we expect the most of the people who, quite frankly, get paid the least. So it is incumbent upon us and others to make sure that they are trained incredibly well because at the end of the day when transitions do resume again, the first question I’m going to ask myself is, ‘Would I want my brother or sister being supported by (that staff member)?’ And if the answer is quite frankly no, then we are going to reassess that. So it becomes very personal to me.”

Increasing difficulty

While they are pledging to start with families who want to move loved ones, the state believes all of the 220 or so patients at Gracewood can live in a community placement, even if that means round- the-clock nursing care, as some will undoubtedly require, Howell said.

“There are some providers who have that robust capability,” he said. “We have to identify who they are, are they willing to expand, what does the reimbursement methodology look like for those providers.”

But as the state has been moving out the developmentally disabled – more than 440 so far – they are left with those with the greatest needs, said Tamie Hopp of the advocacy group VOR in Washington, D.C., which has been working with families at Gracewood and across Georgia.

“As you do move more people out, you are getting down to a core of people who are more disabled and they are far more difficult to serve safely,” she said. “So it raises the question of, ‘Can this be done safely? And how many (deaths) is too many?’ For an organization like VOR and for the families, one is too many.”

Senior fears it will all boil down to just moving everyone out and closing the only real home many of them have known. Terry, as she is known at home, would be considered among the higher functioning and more robust of the patients in her building, but most will need much higher levels of care that parents fear they will not get.

The state “really doesn’t care as long as they keep their numbers where they predicted they should be,” she said. “These parents are so frightened. They break out in tears when you talk to them.”

Photo Credit: JON-MICHAEL SULLIVAN/STAFF