Supreme Court ruling fuels push for community care
Tom Corwin wrote this article, originally published by The Augusta Chronicle, as a 2014 National Health Journalism Fellow. Other stories in his project series can be found here:
Transfers to community care recently resumed for patients in the Gracewood wing at East Central Regional Hospital. Such transfers were stopped in 2013 after deaths and care concerns. (The Augusta Chronicle)
What began as two Georgia mental health patients seeking community care has become a national crusade by the U.S. Department of Justice to move patients out of state facilities and into community care, with what some say are unintended consequences.
Georgia patients Lois Curtis and Elaine Wilson were receiving services at a state hospital and wanted to transition to community care, but the state refused to let them. In 1995, the women sued then-Commissioner Tommy Olmstead of the Georgia Department of Human Resources under the Americans with Disabilities Act and the case reached the U.S. Supreme Court, which ruled in their favor in June 1999.
In what became known as the Olmstead decision, Justice Ruth Bader Ginsburg, writing for the majority, said states would be required to place those patients in community settings when those treating them deemed it appropriate, but added two important caveats – that such a transfer “is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs” of other patients, according to the opinion.
However, the justices also noted “that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.”
By its own admission, in 2009 the Justice Department’s Civil Rights Division “launched an aggressive effort to enforce” Olmstead in individual state actions. Georgia, which had earlier come under scrutiny over conditions in its state hospitals, entered into a settlement agreement with the department and agreed to begin transitioning patients from state facilities into community care.
For those with developmental disabilities, the state agreed to transfer 150 patients a year and to move the last of them by July 1. That part of the settlement was halted in 2013 after a number of patient deaths and a finding that the state was not meeting some patient care standards for those in community care.
Losing arguments
The transfers were recently restarted in the Augusta region, with patients from the Gracewood wing of East Central Regional Hospital, and so far two have been moved this year under what is being called the Pioneer Pilot Project.
But Georgia is hardly alone. The Justice Department is enforcing, pursuing action or filing briefs in support of ADA lawsuits in 23 states and has settlement agreements with 10 states and Puerto Rico.
To those such as Tamie Hopp of the advocacy group VOR, it is telling that the division has devoted a Web page to its actions with the headline “Olmstead: Community Integration for Everyone.”
But the department has not always won its enforcement cases.
In 2009, it sued the state of Arkansas and Arkansas officials, alleging there were violations of the ADA and the Individuals with Disabilities Education Act at the state’s Conway Human Development Center in not moving patients to community settings.
In a June 2011 ruling, U.S. District Judge J. Leon Holmes clearly didn’t buy that argument. His 85-page ruling begins: “Most lawsuits are brought by persons who believe that their rights have been violated. Not this one.”
Holmes noted that any parent or guardian who asked for community placement had received it and that there was near-universal opposition among the rest to moving their family members.
“Thus, the United States is in the odd position of asserting that certain persons’ rights have been and are being violated while those persons –
through their parents and guardians – disagree,” the judge wrote.
Hopp said that is exactly what parents at Gracewood are expressing.
Care concerns
What many of those parents fear is that the patients will not receive a comparable level of care in the community, and particularly for the many medically fragile patients, this could prove fatal.
The numbers in Georgia and studies of patients in California seem to bear that out.
Of the 535 patients who died in 2013 in Georgia, 500 were receiving care in the community; last year, 498 of the 526 who died were receiving community care.
Combined, the death rate would be 16 times higher in community care than in state facilities. Long-term studies of patients in California show this is not an aberration.
Because of California law, people with developmental disabilities had a right to choose and receive community care, and between 1993 and 1996 more than 2,000 adults and children transferred into the community, according to a series of studies by Drs. Robert Shavelle and David Strauss and colleagues.
Crunching the numbers
In studying more than 1,800 of them, they found a 51 percent higher mortality rate than would be expected compared with comparable patients in institutions.
Later analysis of this same group over a longer period of time found a 47 percent higher than expected death rate, and in their 2005 paper the authors conclude that “the cost savings of deinstitutionalization and social value of integration must be balanced against this increased risk.”
However, VOR argues that there isn’t any cost savings to the state.
While at first glance it appears community care is much cheaper than that in an institution, this approach doesn’t take into consideration a number of factors, such as level of care and professional services provided and how much care the patients need, particularly because those still in institutions tend to be older and require more services than those in community care, according to a 2003 literature review in the journal Mental Retardation, which has since been renamed Intellectual and Developmental Disabilities.
The biggest difference seems to be staffing, the authors concluded.
“The modest differences reported for community services are predominantly the result of lower staffing costs in privately operated community settings compared to state-operated settings,” they wrote. And as state institutions close – as they have in Georgia – and those patients are shifted into the community, “it is likely that any initial cost benefits claimed for community settings will be difficult to sustain as individuals with more complex needs are served in these settings,” the authors wrote.
How we did it
The Augusta Chronicle began looking into patients of the Georgia Department of Behavioral Health and Developmental Disabilities who died while in community care after learning of the death of 12-year-old Christen Gordon in August 2013.
The investigation began in earnest after the project was selected in 2014 for a National Health Journalism Fellowship, a program at the University of Southern California’s Annenberg School for Communication and Journalism.
The Chronicle used several Open Records Act requests to obtain investigative files on some of the 82 unexplained deaths in 2013 among the department’s patients in community care, which was then focused on just those with developmental disabilities.
The Chronicle received investigative files on 28 patients, but they were heavily redacted and did not contain names or other identifying information. The newspaper then obtained a database of all deaths in Georgia in 2013 – more than 76,000 – and after extensive cleaning of those records was able to use it to identify 24 of those patients. Using other databases, The Chronicle identified family members for a majority of those patients. Many were uninterested in pursuing an investigation into the deaths and some didn’t return e-mails or phone calls.
The Chronicle used other Open Records Act requests to discover that nearly 1,000 patients had died in community care in the past two years and that a majority of the unexpected deaths are among patients with developmental disabilities.