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Expert concerned over community care for mentally ill, disabled in Georgia

Augusta Chronicle (GA) - 5/31/2015

May 31--Dr. Richard Elliott was the expert witness on a U.S. Su­preme Court case out of Georgia that helped gain access to community treatment for the mentally ill and developmentally disabled. But after seeing how the Olmstead decision is being implemented, particularly in Georgia, he is concerned about the care those patients are receiving.

Other Georgia advocates say the system might not be perfect but that community care is still the way to go.

Elliott said his concern was raised by an Augusta Chronicle investigation this year that found almost 1,000 deaths in the past two years among patients of the Georgia Depart­ment of Behavioral Health and De­velopmental Disa­bil­ities being cared for by community providers. At least 62 in 2013 were former residents of state facilities closed under a 2010 settlement agreement with the U.S. Department of Justice seeking to enforce the provisions of Olmstead. The decision was one of the biggest court cases to arise out of the Americans with Disabilities Act, now in its 25th year.

It was a very different landscape when Elliott, a professor and director of medical ethics at Mercer University who runs a clinic for the developmentally disabled, was approached in the 1990s about providing expert testimony in the case. It initially concerned two women whose primary diagnosis should have been developmental disability but who were continually ending up in the mental health system, Elliott said.

"So they should have been in the community getting habilitation services, learning skills, being helped to manage things in the least restrictive environment, and instead what was happening was they were being put into facilities designed more for the seriously mentally ill," he said. "There was little recognition of their particular needs."

As a former medical director of the state's mental health services in the early 1990s, Elliott said he understood that the system was ill-suited for those patients but that "there really wasn't much available" in the community.

But then the patients prevailed in the Olmstead decision in 1999. Justice Ruth Bader Ginsburg wrote in the majority opinion that patients had a right through the ADA to treatment in the least restrictive environment if their caregivers thought it best, but added the caveats that the patient or family had to want it and "the placement can be reasonably accommodated, taking into account the resources available to the State."

The justices were also clear to point out that their decision should not lead to "termination of institutional settings for persons unable to

handle or benefit from community settings."

Getting care in a community setting can be part of the treatment for these patients, Elliott said.

"They are really no different than us in that the way we grow is to be challenged by things that are a bit beyond our grasp," he said. "In the hospital they were pretty much being told what to do, when to do it, how to do it. And there was really no opportunity for growth."

Despite the sweeping nature of the decision, it is largely unknown even among those in the field, Elliott said. As he consults on cases inside and outside Georgia, he is often struck by the number of times the people involved don't know Olmstead should apply.

Since 2009, there has been a concerted push to get states to comply with Olmstead in providing more community care. The Justice Department has sued or become part of lawsuits against 23 states, and has settlement agreements with Georgia and nine other states plus Puerto Rico.

As part of its settlement, Georgia agreed to move 150 developmentally disabled patients a year into community care and to have them transferred by July 1. The state and the Justice Department agreed to halt those transfers in 2013 after an independent reviewer, Elizabeth Jones, found the state was not providing a good system of supports and meeting individual plans for many patients, as well as a rash of deaths. The Chronicle's investigation found there were 500 community deaths overall that year, including 82 classified as unexpected. Of the 28 deaths for which the newspaper was able to review records, only three had an autopsy as required by the state's policies.

The state has gone from an "everybody goes in" to the hospital to apparently the exact opposite, and neither is a good fit for patients, Elliott said.

He said Olmstead might have had unintended consequences.

"What looked like it was going to be protection for the developmentally disabled, in that there would be those that would have opportunities to move into the community, now some will be forced into community settings that are not meeting their needs," he said.

The key will be getting back to true individualized treatment and making sure someone is ultimately responsible for that patient's care and ensuring their safety, he said.

In one of the deaths where The Chronicle was able to obtain records, 12-year-old Christen Gordon, the community provider ResCare was supposed to provide 12 hours a month of oversight by a registered nurse to review her care. That did not happen in the six months before she died in August 2013, according to a state investigation.

"There has to be somebody, probably at some point a single individual, responsible for this," Elliott said. "Someone who says, 'I am personally responsible to see that these critical indicators are being met.'" And if they are not, we need to know why and we need to know what we are doing about them. And it has to be individualized."

In her review of state compliance in March, Jones said she was unable even to get the records on one recent death because the community provider had closed without giving them to the state.

Eric Jacobson, the executive director of the Georgia Council on Developmental Disa­bil­ities, acknowledged that community support systems are still an issue to be resolved with state placements.

"Especially in Georgia -- but in other states as well -- that issue of really quality services and supports is something we have to think about every day and work towards improvement, because we know that is not always happening," he said. "But that is not to say what people are getting in institutions is quality, either."

It doesn't have to be a trade-off between the relatively higher safety of the institutional care for the potential greater freedom of the community care, Jacobson said.

"If we did a better job on the support side and we did a better job on building community and having people really be a part of the community, we're going to find people are a heck of a lot safer and a heck of a lot happier at the same time," he said.

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