(Cross-posted from The COFAR Blog)
When is the federal government — particularly the Department of Justice — going to recognize or admit that deinstitutionalization of the developmentally disabled hasn’t worked as planned?
The DOJ seems to have closed its eyes to the realities on the ground in continuing to file lawsuits around the country to close state-run care facilities. This has caused “human harm, including death and financial and emotional hardship,” according to information compiled by the VOR, a national advocacy organization for the developmentally disabled and a COFAR affiliate.
While the DOJ has not filed such a suit against the State of Massachusetts, that may be because the state has closed, or is in the process of closing, four out of six developmental centers that were in operation as of 2008. But with two developmental centers remaining as well as other programs that the DOJ considers to be institutional, such as sheltered workshops, Massachusetts could well become a target for a lawsuit at any time.
The VOR filed testimony last month, urging a congressional subcommittee to adopt legislative language that would require the DOJ to do two very commonsense things before filing more lawsuits to close state-run facilities:
- First consult with the residents or their legal guardians “to determine residents’ needs and choices with regard to residential services and supports,” and,
- Second, do not “impose community-based treatment on patients who do not desire it.” This second requirement is consistent with the 1999 U.S. Supreme Court decision in Olmstead v. L.C.
The DOJ’s continued pursuit of class-action litigation to close developmental centers and other facilities has led to the irony that those lawsuits are generally opposed by the families of the residents on whose behalf the suits are ostensibly filed. As U.S. District Court Judge J. Leon Holmes wrote in 2011 in dismissing a lawsuit brought by the DOJ against the State of Arkansas to close the Conway Human Development Center center there:
…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. (U.S. v. Arkansas, June 8, 2011, dismissal order).
Judge Holmes’ decision noted that evidence in the case showed that the parents and guardians of residents of the Conway Center “are overwhelmingly satisfied with the services there and believe that the Center is the least restrictive, most integrated placement appropriate for their children and wards.” Moreover, the judge’s decision stated that the weight of the evidence in the case failed to support the DOJ’s contention that care at the Conway Center was substandard.
The VOR notes that the DOJ’s Civil Rights Division has filed more than 45 legal enforcement actions in 25 states since 2009 to limit or shut down state care. On a website listing all the litigation it has filed, the DOJ includes the heading “Olmstead: Community Integration for Everyone.”
It’s not true, though, that Olmstead requires community-based care for everyone. The Supreme Court decision established a right to community-based housing and care only when:
1. The state’s treatment professionals have determined that community placement is appropriate,
2. Transfer is not opposed by the affected individual, and
3. The placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others with mental disabilities.
Despite those clear conditions, the DOJ has plowed ahead with its community-integration lawsuits under the explicit assumption that all institutional care should be ended and everyone should be sent into community-based care, whether they want to go or not.
This viewpoint by the DOJ is a misinterpretation of the Olmstead decision, and it has had tragic consequences, according to the VOR. The organization pointed out in its testimony that higher mortality rates have been documented in Virginia, Nebraska, Tennessee, and Georgia in the wake of the DOJ’s deinstitutionalization settlements.
Those problems have occurred because so many of the privatized group homes to which the people formerly in the state facilities have been transferred are poorly monitored and are afflicted by high turnover and poor training of staff. Yet, that reality does not appear to have been recognized by the DOJ.
In Virginia, a state sued by the DOJ to close its state-run developmental centers, the risk of mortality for those individuals who left those centers was double that of those who stayed.
In Tennessee, DOJ lawsuits resulted in the closure of one developmental center in 2010 and the downsizing of two others. In that state, deaths among people released from institutions nearly doubled between 2009 and 2013. In addition, according to The Tennessean, a 2013 State Comptroller’s audit reported a lack of access to adequate medical and dental care, incarcerations, and hundreds of reports of abuse, and neglect and exploitation among the transferred developmental center residents.
In Nebraska, a 2014 monitoring team report found that of 47 persons considered to be “medically fragile,” who were transferred from a developmental center in 2009 as a result of a DOJ settlement, 20 (or 43 percent of them) subsequently died.
In Georgia, a 2010 a DOJ settlement agreement required the closure of all state-operated developmental centers and the transfer of 1,000 persons with developmental disabilities as well as 9,000 persons with mental illness from facility-based care. In March, The Augusta Chronicle reported that of 499 individuals with profound developmental disabilities, who had been transferred from the state developmental centers under the DOJ settlement, 62 (or 12%) died unexpectedly.
The Augusta Chronicle article discussed the case of Christen Shermaine Hope Gordon, a 12-year-old girl who died in community-care after being transferred from the Central State Hospital in Milledgeville, GA. The article recounted a litany of poor decisions and poor care that appear to have led to Christen’s death.
In a letter to the DOJ in January of this year, Margaret Huss, president of Intellectual Disabilities Advocates of Nebraska, urged the DOJ to ask critical questions about the mortality figures and other data regarding the transfer to community-based care prior to filing further lawsuits to close state facilities. “An increased risk of death should not be the unintended consequences of the worthy goal of community integration,” Huss’s letter stated. As of May 1, the DOJ had not responded to her letter.
That an increased risk of abuse, neglect, and death exists in community-based care has long been recognized, but few policy makers or people elected to office have been willing to stem the tide of deinstitutionalization. In March 2013, U.S. Senator Chris Murphy of Connecticut did call for an investigation of abuse and neglect in privatized group homes around the country, in response to a series by The Hartford Courant detailing those problems in that state.
In a letter to the Office of the Inspector General in the U.S. Department of Health and Human Services, Murphy termed the level of abuse and neglect in group homes “alarming.” Murphy asked the IG “to focus on the prevalence of preventable deaths at privately run group homes across this nation and the widespread privatization of our delivery system.”
But more than two years after Murphy’s request, it is not clear that the HHS Inspector General ever did undertake such an investigation. The IG’s office has so far not released a report and did not respond to an email query from us on April 30, seeking information on whether an investigation has been undertaken and what its status might be.
Senator Murphy’s office also did not respond to repeated inquiries from us last week as to whether Murphy ever received a response from the IG to his call for an investigation or whether he ever followed up with the IG after his original request in 2013.
Unfortunately, lawmakers in the U.S. Senate, in particular, have also not been supportive of VOR’s proposed legislative language to require the DOJ to consult with families before filing further lawsuits against state care. While language was inserted in a House appropriations bill for the DOJ last year at VOR’s request that protections for institutional care be considered by the DOJ as appropriate for those who desire it, that language was later watered down.
We can only hope that folks begin to wake up in Washington and elsewhere to overwhelming evidence that deinstitutionalization accompanied by privatization is not working, and that someone finally steps forward to slow both of those trends.
I am not talking about wholesale return to institutionalization. But not every person belongs in the community either.
My town is trying to create housing for young adults with autism who have aged out. The town has dobated acreage for townhouse style units and the construction will be donated. I talked to the creator recently and he told me that the only opposition was from the state which says that it is a form of warehousing and the young adults would be better off in hypothetical supervised homes instead of individual units or better still, in an enhanced paid foster care system, isolated and scattered, all the better fir them to be exploited by professionals.
I sincerely think the policy is fueled by a jobs-for-the-boys mentality rather than a tinker’s damn for the welfare of the humans under their purview.
There is nothing wrong with townhouse style housing. There are countless such communities for senior citizens. But with such communities for the disabled would come accountability, and the opportunity for residents to organize, which the administration is trying to avoid at all cost.
But there is something wrong with using taxpayer money to deny lawful rights and choices to the individuals to live where they choose, and where their needs can be best met.