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The federal government’s cruel pursuit of deinstitutionalization

May 5, 2015 7 comments

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.

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Federal agencies ignore realities of care of the developmentally disabled

July 30, 2014 2 comments

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.

The National Council on Disability can’t be serious

December 14, 2012 2 comments

A key sign that ideology has taken over rational thinking in an organization is that the organization ups the ante on a given issue by taking progressively more radical positions on it.

At a certain point, the organization’s position reaches the level of the absurd, and that is what seems to have happened in the case of the National Council on Disability’s  latest position in favor of deinstitutionalization of the intellectually disabled.

In a new online report and “Toolkit” titled “Deinstitutionalization: Unfinished Business,” the NCD, a federal agency that advises the president and congress on issues concerning the disabled, calls for the closure of all institutions for the intellectually disabled.   Here’s the first sentence of the report:

The unfinished business of closing state-run institutions and other public and private institutional settings that have traditionally served people with intellectual disabilities and developmental disabilities is an important first step and should be a top public policy priority in every state where such institutions exist.

More about that in a moment.  First, it’s important to note that the report introduces a new definition of an “institution”:

NCD believes that institutions can be not just large state-run institutions, but community-run small group homes as well;  therefore NCD has defined “institution” as a facility of four or more people who did not choose to live together. (my emphasis)

This can’t be serious!  A group home with four people in it is now an institution?  The Social Security Act has up to now defined institutions as facilities housing 16 or more people.

What do the group home providers around the country, who have long opposed institutional care, think about the NCD’s new definition?  Suddenly it’s the providers themselves who are apparently running little institutions, thinking all along that they were running “integrated” community-based homes.

It gets worse.  The NCD report seems to  focus most of its anti-institutional fire on Intermediate Care Facilities for the developmentally disabled (ICFs), which tend to serve the most profoundly disabled people and which must meet more stringent federal standards for care and treatment than do most group homes.  While developmental centers such as the Fernald and Glavin centers in Massachusetts are ICFs, small, privately operated ICFs also exist in many states.

Apparently, the NCD doesn’t like the fact that the ICFs must meet standards of any sort.  The NCD report characterizes ICFs as providing “a regulated program of services in a formally certified setting,” which means, according to the report, that residents in those facilities are “still living an institutional life.”  Is NCD advocating unlicensed or uncertified facilities here?

Should all ICFs, and group homes with more than three residents in them, for that matter, be shut down, whether the residents are happy in them or not, because the residents are somehow living an institutional life?  Apparently so.

How would that work?  Would providers, for instance, be required to build a new generation of smaller residences that only house three people?  Should families shoulder more of the burden of caring for extremely disabled children or siblings in order to avoid “institutionalizing” them in a residence with more than three people?  The NCD report doesn’t discuss any of that, as far as I could see.  And why should it?  When you’re promoting an ideological viewpoint, why get into practical details?

It would seem the NCD’s goal is ultimately to put everyone out on the street, where they can fend for themselves;  and once there, apparently no matter how disabled they are, they will somehow find “dignity, freedom, choice, and a sense of belonging that is not possible in an institutional environment.”  Does anyone really believe that?

The NCD report adds that “deinstitutionalization is a civil rights issue,” and that a key strategy in closing institutions is to “focus on closure as a civil right.”   But what about the civil rights of the vast majority of families of residents of developmental centers and other “institutions,” who don’t want those facilities to close?

The VOR, a national organization that advocates for a continuum of community and institutional care for those who need it, last week characterized the NCD report and Toolkit recommendations as “irresponsible, given the widespread, well-documented tragedies associated with under-funded and ill-prepared ‘community’ programs for individuals with profound needs.  NCD has put its most fragile constituency at great risk of harm.”

The VOR further questioned whether the NCD has the legal authority to define institutions for the disabled differently than does the Social Security Act.

Meanwhile, here are some of the other strategies in the NCD’s Toolkit for closing those facilities: 

  • “Define the choice (over closure) as not ‘if,’ but ‘when’ and ‘how,'” and
  • “Close the Front Door,” meaning push for the prevention of new admissions to developmental centers and presumably all other facilities with more than three people in them.  The Toolkit states that a strategy of blocking new admissions tends to reduce opposition among families when the decision is made to close those facilities.

My favorite strategy in the Toolkit,  however, is to “Build your case with faces, not facts.”   The Toolkit states:

‘Faces not facts’ are important drivers of the discussion and the community’s support. The issue should have a “face”—personal stories, individual self-advocates, and parents who support the closure are all important influencers. 

That sort of says it all that one of the main strategies advocated by the NCD is to downplay the importance of facts in the debate over closing ICFs.

To be fair, the NCD report does appear to recognize some of the serious problems that exist in the community system, including wages to direct-care workers that average only $10.14 an hour, compared with $15.53 for direct-care workers employed in residential institutions.  The report also acknowledges that there are long waiting lists for care in the community system.

The NCD report even appears to recognize that community-based care can be as or more expensive than institutional care if the same costs and populations are compared.  The report notes:

The average cost of care in the community is not necessarily comparable to the average cost for people in institutions owing to differences in severity of disability and the required services and supports.

And the report recognizes that concerns among families of institutional residents “might include access to regular health care and dental care, safety, and continuity and quality of care” in the community system.

That’s the real unfinished business in providing care to the intellectually and developmentally disabled among us, not closing vital institutions.  As the VOR noted in their statement in response to the NCD report and Toolkit:

Closures (of institutions) opposed by the very people impacted have done nothing to address community capacity. Waiting lists continue to grow and community tragedies to occur.

What do the academic studies say about community-based care?

August 6, 2012 3 comments

A review of the literature

Introduction

In the past two decades, there has been a major shift around the country in care for the intellectually disabled, as tens of thousands of people have been moved from larger congregate facilities to community-based group homes.

(Since congregate facilities, also known as Intermediate Care Facilities for the developmentally disabled (ICFs/DD), are generally referred to as institutions, I will use that latter term here, despite its negative connotations.)

This shift in care, accompanied by a large-scale privatization of residential and other services, has engendered much debate among policymakers and advocates for the disabled.

That debate has played out for close to two decades in Massachusetts, as governors from Weld to Romney to Patrick have moved to close state developmental centers and place their residents in a mix of public and privatized facilities.  While the Patrick administration has, in many cases, moved people from facilities slated for closure to the Wrentham Developmental Center, the administration has stated that its ultimate goal is to move people to community based care.

In a statement in 2007 announcing the decision to close the Fernald Developmental Center, the first of four such centers that the administration has targeted for closure, Secretary of Health and Human Services JudyAnn Bigby stated the following:

The state’s decision (to close Fernald) is consistent with a national shift away from institutional care in favor of community living.  Decades of research indicate that community settings offer people with mental retardation the best care available and the highest quality of life.  The Patrick Administration believes that community living is the best environment in which to ensure family connections, service access, education, training employment and full inclusion for people with mental retardation.

Has the deinstitutionalization effort been an unqualified success, and does academic research support that claim?   

I reviewed academic research on the topic of deinstitutionalization of the intellectually disabled.  Much has been written in scholarly journals on this topic in the past 20 years, and I think it would be safe to say that the writers of those articles have given out both good and bad grades on the impact of deinstitutionalization on the well-being, health and longevity of the people involved. 

Specifically, the studies I reviewed found that:

  • Many people who were deinstitutionalized did indeed experience improvements in the quality of their lives and adaptive skills after being transferred to community-based group homes.

However, many of those same studies reported that:

  • Many deinstitutionalized people have encountered a lack of adequate medical care in the community system, and quality of life and adaptive skills often did not improve for those who had the most profound levels of disability or who were older.

I’ll first discuss the studies I reviewed on the well-being of deinstitutionalized persons and then will discuss an academic controversy over a study that found a higher death rate among people who were deinstitutionalized in California than what would have been expected in the institutions they were moved from.  (A list of the articles I reviewed can be found at the end of this post.)

Quality of life studies on deinstitutionalized persons

One of the more comprehensive reviews I was able to find of well-being or quality-of-life studies of deinstitutionalized persons was a 2011 article by Monali Chowdhury and Betsey Benson in The Journal of Policy and Practice in Intellectual Disabilities.  

Chowdhury and Benson reported that their review indicated that relocation from institutions to community-based settings had a “general positive impact on life quality of participants.”   

At the same time, Chowdhury and Benson stated that many of the studies they reviewed found that “improvements were most prominent shortly after the move and plateaued after a year.”  While some studies showed gains in adaptive behavior in former institutional residents who had been moved to the community, they wrote, other studies “have shown neither significant increase in adaptive skills nor the maintenance of modest gains when moving to community group homes.” 

Chowdhury and Benson also reported that in a number of studies, “participants continued to have low levels of community integration,” and there was “some evidence that healthcare needs might not be adequately met in the community.”

A 2007 article in Current Opinion in Psychiatry by J. Beadle-Brown et al. contained the following summation of the academic literature on deinstitutionalization of the intellectually disabled:

Work on deinstitutionalization continues to show that outcomes are better in the community than in institutional care, but recent papers highlight that there is more to deinstitutionalization than just hospital closure.  Just moving people out of institutions into community settings does not bring about automatic improvement in quality of life in terms of choice and inclusion as well as self-identity and access to effective healthcare and treatment. This is especially true for people with more severe intellectual disabilities as well as complex needs such as challenging behaviour.

Among the other studies I reviewed that drew similar conclusions that transfers from institutional to community care were often but not always successful was a 2010 overview of research by Patricia Noonan Walsh et al. in The Journal of Policy and Pratice in Intellectual Disabilities.

Citing what they termed “post-deinstitutionalization” studies that they had reviewed, Noonan Walsh and her colleagues stated that these studies provided “consistent evidence for greater choice, self-determination, and participation in community-based activities in smaller settings, but no evidence for greater physical health or material well-being…” 

In addition, a 1998 study in the journal Mental Handicap Research by Andrew Bratt and Rob Johnston of five intellectually disabled adults who had left a hospital to live in a “bungalow” in Exeter, England, concluded that while the staff considered the group as whole to be better off after the move:

…little evidence of integration being achieved within the local community was recorded; and there was little or no evidence of individuals being supported in ways that increased their competence, particularly in relation to participating at a simple level in routine domestic tasks.

Perhaps one of the reasons for the discordant findings among many researchers over the impact of deinstitutionalization is the difficulty in measuring that impact.  That difficulty may have contributed to the disagreement among many policymakers and advocates as to whether deinsitutionalization has been beneficial or not.

Chowdhury and Benson noted that many of the studies they reviewed on deinstitutionalization relied on interviews with intellectually disabled persons to determine quality-of-life differences between institutions and group homes.  However, other studies have found, they stated, that these interviewing techniques can be compromised by “response biases,” which “can seriously damage the reliability and validity of self-report data on subjective QoL (Quality of Life) in individuals with ID (intellectual disabilities).” 

One 2000 study, for instance, by Jonathan Perry and David Felce in Mental Retardation, reported that two thirds of the respondents in a sample of 154 adults with intellectual disabilities were either unable to respond to questions in a structured interview about their quality of life or exhibited response bias.   The authors noted that the most common form of response bias among people with intellectual disabilities is “the tendency to acquiesce, that is, to say yes to questions regardless of their content” (emphasis in the original).” 

Chowdhury and Benson further noted that given those problems with response bias, “a knowledgeable proxy,” such as a staff member or parent, is often asked to respond on behalf of an intellectually disabled person to quality-of-life survey questions.  However, they stated using such proxies is “usually not seen as an accurate substitute” for measuring QoL of people with ID.”

The California mortality study controversy

A major area of disagreement among academic researchers appears to center around attempts to determine whether moving intellectually disabled persons out of institutions causes them to die earlier than they would have had they stayed in those facilities.  This disagreement as well has spilled out into the policymaking and advocacy worlds.

I was was recently criticized, for instance, by a leading opponent in Massachusetts of developmental centers for the intellectually disabled for citing a one such mortality study on deinstitutionalization  that had been done on residents who were moved from institutions to community group homes in California in the 1990s.

In a recent post  calling for saving the Glavin Regional Center in Massachusetts from closure, I wrote that a  2005 paper by Robert Shavelle, David Strauss, and Steven Day in The Journal of Data Science, reported that the authors had analyzed data  on more than 1,800 children and adults who had been dinstitutionalized in California between 1993 and 1996.  The authors found that as of 1999, there were 81 deaths among those who had been transferred from institutions to community-based group homes.  Using statistical regression, Shavelle et al. reported that the the death rate represented a 47 percent increase in mortality over that expected in institutions.

Shavelle and Strauss concluded that the increase in deaths appeared to reflect less intensive medical care and supervision available in the community.

I wrote the post on behalf of COFAR, a nonprofit organizaton that I consult for and that advocates on behalf of the intellectually disabled and their families.

COFAR, along with Strauss and Shavelle, were criticized by Gary Blumenthal, president of the Massachusetts Association of Developmental Disabilities Providers (ADDP), who wrote in a comment (under the user name “dcjayhawk”) to my post that:

COFAR…attempts to frighten families by telling them of higher mortality rates in community programs versus ICF (Intermediate Care Facility) programs by citing a flawed 1993-1998 California mortality study whose methodology and findings have been discredited by multiple expert researchers…

Blumenthal went on to cite four studies that he claimed discredited the work of Shavelle and Strauss.  (More about that below.)  The ADDP, which represents nonprofit operators of group homes in Massachusetts that contract with the state Department of Developmental Services,  supports the closure of all remaining developmental centers in Massachusetts and the transfer of all of their residents to community-based group home programs.

The California mortality research of Shavelle  and Strauss was also criticized by Connecticut Department of Developmental Services Commissioner Terrence Macy, who has stated that he wants to move residents out of the state-run Southbury Training School in Connecticut and into privately run group homes.  In a recent letter to another client of mine, The Southbury Training School (STS) Home & School Association, Macy maintained that:

The California study is well over twenty years old.  Its research methodology of contrasting deaths that occurred in the community to “those expected in institutions” is no longer a viable research methodolgy.  I would doubt this research design would even be accepted for publication in today’s research periodicals.  That study has been replaced with a large number of studies that have been conducted throughout the country over a long period of time.  Many of these studies are longitudinal so by design they follow persons who have moved over extended periods.  This significant body of rigorous studies has consistently concluded that persons who have transitioned out of institutions in fact have benefited from placement in the community.

But have the Shavelle study and earlier versions of it by Strauss really been discredited and are they really over 20 years old?  

In answer to that second question, I would note that Strauss and co-author, Theodore Kastner, first published findings of a higher mortality rate among deinstitutionalized persons in California in 1996 in The American Journal on Mental Retardation.   The article by Shavelle and Strauss, which I cited in my BMG blog post, was an update of the original study, and was published in 2005 in The Journal of Data Science.  Thus, even Strauss’s earliest findings do not appear to be more than 16 years old, and the work done by him and his colleagues on this topic was accepted by a peer-reviewed periodical only seven years ago.

Strauss’s research website lists a total of 10 studies and one commentary on mortality issues associated with deinstitutionalization that he co-authored with a total of eight colleagues.  Strauss himself is professor emeritus of statistics at the University of California, while Shavelle has been a visiting assistant professor at the University of California and has a Ph.D. in statistics.  Kastner, a physician, has held associate professorships at the New Jersey Medical School and the Columbia University College of Physicians and Surgeons.

I reviewed all four of the studies cited by Blumenthal of the ADDP as having discredited Strauss’s methodology and findings.  What I found is that, as with the studies on the quality of life of intellectually disabled persons, studies on mortality rates of people who have been deinstitutionalized often reach differing conclusions.

I also found that while three of the four studies cited by Blumenthal did dispute the mortality findings of Strauss and his colleagues in the 1990s in California, two of those three were largely respectful of Strauss’s work.  (More about the exception below.)  Strauss and his colleagues, as far as I can tell, have not been discredited.  The fourth study cited by Blumenthal as having discredited Strauss’s California mortality studies actually did not directly address that topic at all. 

I would also note that each of the studies cited by Blumenthal that did dispute the mortality findings of Strauss and his colleagues was done by researchers who disclosed consulting relationships with state agencies that had or were seeking to close developmental centers.  In my view, those relationships raise questions about the independence of those studies.

As noted, only one of the articles cited by Blumenthal was actually overtly critical of Strauss et al. and their methodology.  That critical article, titled “Commentary on the mortality issue,” by James Conroy and Miriam Adler, was published in the journal Mental Retardation, in October 1998.

In the commentary, Conroy and Adler cited a 1995 study they undertook on the transfers of residents from the Pennhurst Developmental Center in Pennsylvania, and stated that they had found a “sharply decreased risk of death when people moved from institution to community.”  They termed Strauss’s 1996 finding of a higher death rate in the community system “utterly false” and compared it to the discredited discovery of cold fusion.

It should be noted that Kastner returned the favor, critiquing Conroy’s methodology in a number of papers, including a 2000 article  in Mental Retardation concerning Conroy’s Pennhurst closure study.  Kastner also co-authored a 2006 article with Kevin Walsh in the same journal, titled “The Hissom Closure in Oklahoma: Errors and Interpretation Problems in Conroy et al. (2003).”

In that 2006 article, Walsh and Kastner charged that the research of Conroy and his colleagues had been “seriously compromised by data collection problems and discrepancies between reported findings and those obtained when the analyses were replicated.”

Several of Conroy’s reports were also criticized in the 1990s by former staffers of the California Department of Developmental Services, according to the May 1996 issue of Outreach, a publication of the California Association of Psychiatric Technicians.  The journal article, titled “Conroy Reports Controversy,” also stated that Philip Bondy, who is a former chair of Yale’s Department of Internal Medicine and a Southbury Training School Home & School Association Board member, was critical of a study done by Conroy on the outcomes of the closure of the Mansfield Training School in Connecticut.  

Bondy emailed me that his criticism was based on Conroy’s reliance in the Mansfield study on quality-of-life interviews with attendants as proxies for former Mansfield residents who had been moved to community-based group homes.  “There is no reason to believe that the attendants were unprejudiced,” Bondy wrote, “since they were employed in providing community care and might reasonably expect to give favorable answers.  Although Conroy quoted statistics in  support of his conclusions, I believe that they were based on faulty data,” he added.

Bondy is a former editor in chief of both The Journal of Clinical Investigation and The Yale Journal of Biology and Medicine.

Conroy’s resume  indicates that he authored or co-authored hundreds of reports on the well-being of deinstitutionalized residents, most of which appear to have been submitted to state agencies running ICFs and community-based facilities or to entities such as the Institutional Closure Commission of Ohio.  I think that may raise some questions about his independence in researching this issue.

A second article cited by Blumenthal as having discredited the work of Strauss and his colleagues on mortality rates in California was a 1998 study by Kevin O’Brien and E.S. Zaharia.  The study, titled “Recent mortality patterns in California,” was published in the same issue of Mental Retardation in which the Conroy commentary was published.

The O’Brien and Zaharia study found no increased risk of death in the community for the same population that Strauss and his colleagues had studied.   But far from discrediting Strauss’s results, O’Brien and Zaharia stated that the reasons for the discrepancies between the two studies were “unclear.”  They acknowledged that due to validity prolems with databases used to analyze the number of deaths, “there may have been quite a bit of contamination in all of our analyses.”

In a separate commentary in the same issue of the journal (titled “Is it Life Threatening to Live in the Community?”), O’Brien and Zaharia stated:   “We believe that the suggestions made by Strauss et al. (1998) (about closely monitoring initial placements of residents in community settings) should receive thoughtful debate.”

O’Brien and Zaharia disclosed in their papers that they were consultants to the California Department of Developmental Services.

A third study cited by Blumenthal as discrediting the Strauss studies was done by Paul Lerman, Dawn Hall Apgar, and Tameeka Jordan and published in in Mental Retardation  in August 2003.  This study did not find evidence that moving residents out of a developmental center in New Jersey and into the community caused more deaths.  However, the authors concluded that the difference between their results and Strauss’s findings could be due to variations in policies in the two different states on deinstitutionalization or to differences in population characteristics. 

Lerman et al.  also noted several limitations to their own study, including limitations on the reliability of their behavioral variables.   The study was hardly an effort to discredit Strauss and his colleagues.

The Lerman study, by the way, was funded by the New Jersey Division of Developmental Disabilities.

The final study cited by Blumenthal as discrediting the Strauss studies was actually concerned with the well-being of people transferred from nursing homes to community residences.   The 1998 study, by Tamar Heller, Alan Factor, and Kelly Hsieh, in The American Journal on Mental Retardation, mentioned Strauss’s research in passing and was not in any way critical of it.

In a defense of their work, published in the same 1998 issue of Mental Retardation as the Conroy and O’Brien and Zaharia articles, Strauss and Shavelle maintained that they were not attempting to evaluate “the merits of institutional versus community living,” and were not arguing that persons living in the community should move or return to a state institution.”  Instead, they said, “[o]ur concern was with the quality of health care and supervision currently available in the community.”

In that commentary, Strauss and Shavelle cited a Congressional subcommittee report, newspaper reports on avoidable deaths in California group homes, and a critical report on the community system in California by the federal Health Care Finance Agency as buttressing their findings. 

Conclusion

This review of the academic literature on institutional versus community-based care for the intellectually disabled is admittedly far from exhaustive.  But I think most researchers in this field would probably agree that I’m correct in concluding at least one thing about the research that has been done on this topic:  That is that there is no clear consensus among scholars that either system of care is better in all respects for all intellectually disabled people. 

Both of the advocacy organizations that I work for believe that the community-based system is appropriate and beneficial for the majority of people with intellectual and developmental disabilities.  At the same time, both organizations also maintain that for a portion of this population with severe and profound levels of disability as well as those who who are older or have complicated medical conditions, institutions continue to play a vital role in their care.

Both COFAR and the Southbury Training School Home & School Association are nonprofit organizations that advocate for families and guardians of intellectually disabled residents of state-run facilities.  Many of those facilities have been targeted for closure by state administrators who, in many cases, appear to believe that all intellectually disabled persons should live in the community system.

I hope this survey of the literature on this topic will persuade at least some of those administrators as well as legislators, policymakers, and others that those in the academic community, who have looked at this issue objectively and scientifically, have not reached a consensus that the community is better for everyone.  Instead, the scholarly literature on this topic appears to support the contention that “one size doesn’t fit all.”

References for this post:

Beadle-Brown, J.; J. Mansell; and A. Kozma, “Deinstitutionalization in intellectual disabilities. Current Opinion in Psychiatry, 2007, 20(5):437-42.

Bratt, A. and R. Johnston, “Changes in life style for young adults with profound handicaps following discharge from hospital care into a ‘second generation’ housing project,” Mental Handicap Research,  1998, 1(1): 49–74.

Chowdhury, M., and B. Benson, “Deinstitutionalization and Quality of Life of Individuals With Intellectual Disability: A Review of the International Literature,” Journal of Policy and Practice in Intellectual Disabilities, 2011, 8(4): 256–265.

Conroy, J., and M. Adler, “Commentary on the mortality issue,” Mental Retardation, 1998, 36(5).

Cullen, C.;  M. Whoriskey, K. Mackenzie, W. Mitchell, K. Ralston, S. Shreeve, and A. Stanley, “The effects of deinstitutionalization on adults with learning disabilities,” Journal of Intellectual Disability Research, 1995, 39(6): 484–494.

Heller, T.; A. Factor, and K. Hsieh, “Impact of age and transitions out of nursing homes for adults with developmental disabilities,” The American Journal on Mental Retardation, 1998, 103(3).

Kastner, T., “On the Need for Policy Requiring Data-Sharing Among Researchers Publishing in AAMR Journals: Critique of Conroy and Adler (1998),” Mental Retardation, 2000, 38(6): 519-529.

Lerman, P.; D. Apgar, and T. Jordan, “Findings of a Controlled Research Design in New Jersey,”  Mental Retardation, 2003, 41(4): 225-236.

Noonan Walsh, P.;  E. Emerson, C. Lobb, C. Hatton, V. Bradley, R. Schalock, and C.  Moseley, “Supported Accommodation for People With Intellectual Disabilities and Quality of Life: An Overview,” Journal of Policy and Practice in Intellectual Disabilities, 2010, 7(2): 137–142.

O’Brien, K., and E.S. Zaharia, “Recent mortality patterns in California,” Mental Retardation, 1998, 36(5).

O’Brien, K., and E.S. Zaharia, “Is it life threatening to live in the community? Commentary,” Mental Retardation, 1988, 36(5).

Perry, J. and D. Felce, “Subjective and Objective Quality of Life Assessment: Responsiveness, Response Bias, and Resident: ProxyConcordance,” Mental Retardation,  2002, 40 (6): 445–456 

Shavelle, R.; D. Strauss, and S. Day, “Deinstitutionalization in California: Mortality of Persons with Developmental Disabilities After Transfer Into Community Care, 1997-1999,”  Journal of Data Science, 2005, 3(4): 371-380.

Strauss, D. and T. Kastner,  (1996). “Comparative mortality of people with mental retardation in institutions and the community,” American Journal on Mental Retardation, 1996, 101(1): 26-40.

Strauss, D. and R. Shavelle, “Policy Implications of Mortality Research: What Can We Learn From the California Mortality Studies?” Mental Retardation, 1998, 36(5).

Walsh, K., and T. Kastner, “The Hissom Closure in Oklahoma: Errors and Interpretation Problems in Conroy et al.,”  Mental Retardation, 2003, 44( 5).

Weismann, C., and K. Hearn, “Conroy Reports Controversy,” Outreach, May 1996.