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Federal agencies ignore realities of care of the developmentally disabled

Some agencies within the Obama administration have an ideological bias against congregate care for the developmentally disabled that has apparently blinded them to the damage done to countless lives in the name of deinstitutionalization.

That bias, which is held as well by the Patrick administration in Massachusetts, is on display in an article written by a key former Obama administration official about the deinstitutionalization movement from the 1960’s to the present.

The article is by Samuel Bagenstos, former principal deputy assistant attorney general in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases.

Bagenstos acknowledges in the article, published in the Cardozo Law Review, that the past and pending closures of institutions such as the Fernald Developmental Center in Massachusetts have not resulted in adequate funding for community-based care.  But Bagenstos declines to acknowledge the role his own former agency has played in the often checkered expansion of the largely privatized community system that followed the closures of state-run Intermediate Care Level facilities for individuals with intellectual and developmental disabilities (ICFs/IID).

Instead, he argues that if only families of developmentally disabled individuals see fit to team up with advocates of further deinstitutionalization, they can work together somehow to ensure that care will be adequate in the community.  We aren’t buying it, and the VOR, our national affiliate, isn’t buying it either.

In a response to Bagenstos’s article, the VOR contends that:

Bagenstos shows no willingness to take responsibility for the tragedies that he and the other advocates caused to these highly vulnerable individuals. Nor have past failures moved Bagenstos to take a more reasoned approach to deinstitutionalization efforts, one that insists on building quality, community placements and adequate oversight before displacing fragile individuals from ICFs/IID.

Instead, closure advocates are turning to new “battlegrounds” (private facilities, nursing homes and adult care homes), without apparent concern for the hundreds of thousands of individuals on waiting lists for community services or the history of abuse, neglect and death that has befallen countless community-based individuals.

In an article this month in The Nonprofit Quarterly, Tamie Hopp, VOR’s director of government relations and advocacy, adds that among the results over the past 30 years of deinstitutionalization of the developmentally disabled are waiting lists in states for residential care that now number nearly 317,000 people, emergency rooms that “have become de facto urgent care clinics” for developmentally disabled people, and correctional facilities that are “replacement treatment centers” for some individuals who have both mental illness and developmental disabilities.

As Hopp points out, U.S. Senator Chris Murphy (D-CT) has called for a U.S. Department of Health and Human Services Office of Inspector General investigation to “focus on the prevalence of preventable deaths at privately run group homes across this nation and the widespread privatization of our delivery system.”  The VOR has catalogued hundreds of media reports of abuse and neglect in privatized group homes around the country in recent years.

Yet key current and former officials in the Obama administration seem oblivious to all of this, and so does the Patrick administration in this state.  As we have noted, the Obama administration’s National Council on Disabilities (NCD) now labels any facility with four or more residents an “institution,” and has called for the closure of all such facilities.  The NCD does not appear to have put any thought into what would replace the care provided in those settings.

Meanwhile, the federal Centers for Medicare and Medicaid Services (CMS) has written new regulations to terminate Medicaid funding for any facilities that happen to be located on the grounds of state-run or private ICFs/IID or even near to them.  And just this past week, President Obama signed a bill into law limiting placements for people in sheltered workshops, which the CMS considers to be inappropriate centers of congregate care.  Fortunately, the Massachusetts Legislature acted last month to preserve sheltered workshops in this state for those who choose to remain in them.

For some within the Obama administration, the wishes and preferences of the individuals and families most affected by deinstitutionalization do not appear to be of importance.  Since 2009, the Justice Department, while at least partly under Bagenstos’ leadership, has filed, joined, or participated in more than 40 lawsuits in at least 25 states to provide individuals what it considers to be “full community integration.”  As a result, hundreds of people have been moved from ICFs/IID homes, regardless of whether they or their families or guardians wanted to close the facilities they were living in or not.

In his article, not only does Bagenstos neglect to acknowledge the suffering and damage that has been caused by these institutional closures, but he does not appear to understand the financial corruption that pervades the largely privatized system of care that has replaced the large institutions.

For instance, Bagenstos maintains that “deinstitutionalization advocates now are fighting to expand the amount of state money spent in the community—and, especially in tight budget times, to defend existing community services against cuts.”    But this doesn’t appear to recognize that the most potent force for deinstitutionalization advocacy today is to be found among the corporate providers that have moved in to the vacuum created by the disappearance of ICFs/IID.  They are actually fighting to expand the amount of state money going into their own pockets, particularly the pockets of the huge bureaucratic layer of corporate executives that run these companies.

Hopp points out that between 1977 and 2010, as ICFs around the country were being closed, the number of residential settings serving people with developmental disabilities increased by more than 1,500 percent, with most of these new settings being small and privately operated.

Bagenstos and many within the current administration also seem not to understand that the federal Americans with Disabilities Act (ADA) and the Olmstead v. L.C. U.S. Supreme Court decision both recognize the need for a range of services for the developmentally disabled, including institutional care for those who desire it. Bagenstos discusses the ADA and Olmstead only as potential legal avenues to boost funding for the community-based system. And he starts with an unproven assumption that community-based care is better in all respects than institutional care.

“Over time, an evidence base has developed that has both refined and demonstrated the superiority of these (community-based) service models,” Bagenstos states in his article. He includes no citation for this claim.  In fact, in addition to the problems cited above of abuse and neglect in the privatized system,  academic experts have drawn mixed conclusions as to whether people who have transferred from institutional to community-based settings have experienced improvements in the quality of their lives or care.

Bagenstos also appears off base in what he writes about the history of the litigation over the closure of Fernald.  He writes:

When Massachusetts responded to fiscal concerns by seeking to close the Fernald Developmental Center, its oldest institution for people with developmental disabilities—even though it offered residents and guardians a choice of transferring to another state institution—Fernald parents sought to reopen a long-closed pre-Olmstead case [Ricci v. Okin] that had been settled in 1993.  The parents argued that the closure actually violated Olmstead, because it deprived them of the opportunity to oppose placement in the community.

Bagenstos’s statements about the reasons for the reopening of the Ricci case are overly simplistic at best.  The Fernald families alleged in 2004  that by instituting staffing reductions and budget cuts at Fernald, the then Romney administration was violating U.S. District Court Judge Joseph Tauro’s 1993 disengagement order in the Ricci case that required the maintenance of high standards for care at Fernald and in other ICFs.  The families also alleged that the administration was re-writing residents’ care plans and failing to certify that the residents would receive equal or better care elsewhere.

Secondly, while the Patrick administration did offer the Fernald residents a choice of a different ICF, the concern among the families, starting prior to the Patrick administration, was that the ICF they moved to from Fernald might itself subsequently be closed, leaving them with the prospect of multiple moves. That concern proved to be well-founded in 2008 when the Patrick administration announced it was closing three additional ICFs in the state, out of six then remaining.  Only one of the two remaining ICFs in the state was listed by the administration as not being on the closure list.

Bagenstos also mischaracterizes a bill filed by then Massachusetts Congressman Barney Frank that would have given guardians of persons with developmental disabilities the right to opt out of those lawsuits supposedly filed on their behalf by the Justice Department and federally funded legal aid agencies to close facilities in which those disabled individuals happened to be living.  Frank’s bill would also have  required the Justice Department to consult with the guardians in any investigations undertaken of those facilities. Bagenstos writes:

Evidently blaming the Massachusetts government’s decision (to close Fernald) on the pressures caused by the threat of litigation, Representative Barney Frank, who represented the district in which Fernald was located, responded by introducing legislation that would limit the ability of federally funded Protection and Advocacy agencies—the source of much Olmstead litigation—to bring cases that could lead to the closing and downsizing of institutions. Both VOR and AFSCME (a state employee union) have vocally supported this legislation. Though the legislation has not moved in Congress, the support by one of its most stereotypically liberal members for a bill that would limit public interest lawsuits highlights the unusual political alliances that continue to surround deinstitutionalization litigation.

In our opinion, Frank’s bill would not have limited any organization’s ability to bring cases to close institutions.  As noted, it would only have given guardians a choice as to whether to participate in those suits.

We are glad to see that Bagenstos at least believes that the closures of ICFs will not necessarily save money in the long run.  He states that:

Although studies of deinstitutionalization have found that people who move from institutions to the community can achieve better outcomes at lower cost, it is reasonable to expect that the cost gap will shrink as people in the community receive more services. This may be especially true because a significant part of the cost gap reflects differences in the wages paid to workers in institutional and community settings.

In the final analysis, we think, the major problem that the developmentally disabled face is not the threat of institutionalization, it is the lack of adequate care and services in the supposedly deinstitutionalized system.   As Hopp notes:

The legal framework is in place to support individualized care and choice. Advocates must set aside efforts to eliminate options of care and work together to expand options. This begins with a commitment to serving each individual: true person-centered planning.

The problem with the approach advocated by Bagenstos and many within the Obama administration is that it advocates the elimination of options for people with disabilities.  It is a one-size-fits-all approach to care and services, and that size appears to be steadily shrinking as Bagenstos and others in the administration promote smaller and smaller residential settings that no longer meet high standards of care.

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  1. Jeff
    August 2, 2014 at 3:24 am

    I have read some things that you posted earlier this year on the situation with the DOJ going after day programs for the disabled. You should know that I work in the field. I am a Service Facilitator in Hamilton County, Ohio (Cincinnati). My brother lived at three of our state run “developmental centers” up until he passed away in 2007. My dad (and my mother prior to her death) has been deeply involved in advocacy in the state of Ohio since the early ’70’s. I’m not sure what else to say because there is much too much to say. You must know that those of us who work on the front lines are, almost to a person, deeply troubled by what is going on under the Obama administration. Lest I be misunderstood, I voted for Obama twice and, leaving many issues I have with his administration aside, this situation with his DOJ has boiled up into a serious crisis for individuals with disabilities. You write very well, and I just wanted to make contact with you because I think something has to be done to spread the word. Having said that, as you might imagine, I have to watch what I do and say given my position.

  2. August 2, 2014 at 1:51 pm

    I’m posting this comment on behalf of Saskia Davis, whose sister is a resident of the Fircrest School in Shoreline, WA. Ms. Davis encountered technical difficulties in trying to post the comment herself:

    Mr. Bagenstos and other deinstitutionalization zealots seem to be selectively deaf & blind to the realities, not only of the needs of people who live in institutional settings for people with intellectual developmental disabilities (i/dd), but to the needs of the people waiting for residential services as well as to how we, as a society, treat other peer groups. When we examine these factors, it appears to me that Mr. Bagenstos and the others who agree with him are practicing a level of discrimination that is rivaled only by it’s level of impracticality.

    Hospitals: Are these normal congregate care settings abusive because they serve their patients collectively? Of course not. We serve patients in hospitals in order to meet their needs most efficiently. Should we close all the hospitals and mandate that their services now only be met in homes with less than 4 patients? To do so would literally ruin their abilities to serve the numbers of people who need the services.

    Public Schools and institutions of higher learning: Are these normal public congregate service settings abusive because they serve their populations collectively? No, of course not. We serve students collectively because we can more efficiently & affordably deliver the needed services to people collectively than individually. Should we close the public school system and mandate individual, home tutoring for all students? To do so would literally make it economically and logistically impossible to serve the numbers of students we are responsible to educate.

    Senior communities: Are these normal, peer residential settings abusive because they serve their populations collectively? Of course not. Their residents elect to move into them because of the elements of peer community, convenience and efficiency of the collectively shared services they offer. Should we take a leaf out of the book of assumptions from which Mr. Bagenstos and cohorts are operating: close all the senior communities, ignore the choices of the people residing in them and force them back out in to non-peer, non-congregate living situations? Why would we do that?

    Hospitals and Public Schools, have the following in common with institutional residential settings for people with i/dd: 1. Efficiency 2. Economy 3. Appropriateness for delivery the services needed.

    In addition to efficiency, economy and appropriateness of services, the critical element of choice is shared in common between senior communities and institutional settings for people with i/dd. No one is forced to live in either one. But people choose to live in each. Their choices are based on the very features that are available in them by virtue of the congregate nature of their settings.

    Should people with i/dd needing peer communities to make them feel less like fish out of water be forced to live otherwise? Should people with i/dd needing centralized, convenient services and 24/7 care be deprived of it in congregate settings specifically designed to meet their needs?

    Hopefully, Mr. Bagenstos is capable of logic, reason, understanding and caring. Hopefully, he is open to sorting out the needs of the people who need and must have available to them the institutional settings for people with i/dd from the irrational, ideologically-driven and economically self-serving positions of the people who have influenced him so far.

    Part of what makes America great is the notion that we were created equal. If that is the case, then the voices of people with i/dd who need congregate care communities will not be ignored or drowned out by those whose pocketbooks crave the public money available to them only when institutions are closed.

    May it be so!
    Saskia Davis, RN, Family Guardian

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