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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.

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The Sherlock Holmes-style mystery of the secret switch of the ‘Real Lives’ bill versions

How exactly does it happen in the state Legislature that a good piece of legislation gets “lost” just as a bad piece of legislation has been substituted for it?

That seems to be exactly what happened with the ‘Real Lives’ bill this spring in the state Legislature.  There has long been a heavy dose of game-playing by corporate providers to the Department of Developmental Services in their years-long quest to gain passage of this bill; but the secret substitution of their preferred version for another, much better, version of the bill this spring may take the proverbial cake.

In this case, the sleight-of-hand move may bring the DDS providers as close to winning passage of their version of the bill (H. 4237) as they have ever been.  We understand H. 4237 is going to be sent to the Senate very soon from the House for final passage.

This is a badly flawed piece of legislation. The much better redraft of this bill was approved in early May by the Children, Families, and Persons with Disabilities Committee (H. 4063).  But somehow, as noted, that redraft, which was done by Senator Michael Barrett’s office, got lost one month later in the legislative process.  Somehow, H. 4237 was substituted for H. 4063 in the Health Care Financing Committee.

When I talked a few weeks ago with a staff member of the Health Care Financing Committee, I was told the substitution was a mistake.  But if it was a mistake, it’s one that has yet to be corrected; and it may soon be too late to correct it.  (Maybe we can engage a modern-day Sherlock Holmes to find out what really happened to Senator Barrett’s version of the bill.  Maybe it has been hidden away in a State House attic, a la Holmes’s Adventure of the Norwood Builder.)

The Real Lives concept is intended to serve the laudable goal of providing intellectually disabled persons and their guardians with greater choice and “self-determination” in obtaining services from the Department of Developmental Services. But as currently drafted, H. 4237 is little more than a vehicle for the financial benefit of DDS corporate providers.

As we have pointed out in numerous blog posts and in our July newsletter, the current text of H. 4237 would inappropriately place DDS provider-based organizations on an advisory board that would help design the self-determination program. These same providers were involved in drafting this legislation, and stand to benefit financially from any program they help create.

In addition, the current draft of the bill would establish a “contingency fund,” which would further compensate DDS providers financially if and when residential clients leave them for other providers. These and other provisions in the current draft of the legislation create unacceptable conflicts of interest.

In contrast, Barrett’s redraft of the legislation, which was approved in May by the Children and Families Committee, would have removed the contingency fund and all references to provider-based organizations on the advisory board. That redraft (H. 4063) would, moreover, have required that more than 50 percent of this board be made up of individuals who are financially independent of any provider.

But as noted, when H. 4063 was sent by the Children and Families Committee to the Health Care Financing Committee in early June, the redraft was removed, and the provider-friendly version of the legislation was re-inserted as H. 4237. As unacceptable as this bill has become, the process under which the redraft was removed from it is equally unacceptable.

Please ask your senator to vote against H. 4237 in its current form, and to send it back to the committees it came from so that Senator Barrett’s redraft can be found and restored to it.

Sheltered workshops for the disabled win big reprieve in Massachusetts

July 14, 2014 5 comments

A major effort by advocates of sheltered workshops in Massachusetts to persuade state legislators and the Patrick administration that the workshops provide invaluable skills and activities for their loved ones with intellectual disabilities has paid off.

Last week, Governor Patrick signed the Fiscal Year 2015 state budget, which contains language protecting the workshops from closure.  The language states that the state must not “reduce the availability or decrease funding for sheltered workshops serving persons with disabilities who voluntarily seek or wish to retain such employment services.”

The passage of this language appears likely to cause at least a slowdown in the administration’s plans to close all remaining sheltered workshops in the state as early as next June.   The administration has contended that sheltered workshops “segregate” people with developmental disabilities from their non-disabled peers in the mainstream workforce. Supporters of the workshops, and we are among them, argue that the workshops provide needed skills and fulfilling work for people with intellectual disabilities, and do not prevent them from contact with peers in the community.

The protective workshop language survived a House-Senate conference committee late last month, and Gov. Patrick had until last Friday to line-item veto it, and chose not to do so.  So, it’s now the law.

The legislative victory is largely due to an intensive effort by workshop supporters to get the word out to key legislators — particularly to Rep. Brian Dempsey, chair of the House Ways and Means Committee — of the value of the workshops, and of the contention that the administration and corporate provider-based organizations such as the Arc of Massachusetts were spreading misinformation about them. Dempsey, in particular, has turned out to be a strong supporter of the workshops, particularly in the budget conference committee.

It remains to be seen whether the protective language will help people like Tom Urban, a 55-year-old man with Down Syndrome, who had been employed in a sheltered workshop for the bulk of his adult life, according to his brother and guardian, Richard.   Richard said that last December, he was informed that all sheltered workshops were being closed and that Tom would no longer be employed, as of the very next day, in his workshop, operated by Work, Inc., a Department of Developmental Services provider.

“To put it mildly, this was a rather disruptive change in Tom’s life with no opportunity to prepare him for this shocking development,” Richard Urban wrote in an email to Rep. Dempsey in late May.  “Moreover,” he said, “no chance was provided for me, as his brother, guardian and caretaker, to voice any opposition, or input, to this policy change imposed by (DDS).”

Richard said that although Tom “has limitations in a variety of areas, his work ethic and paycheck (from his sheltered workshop program) were two constants that allowed him a place on a playing field of equality with his peers, family and friends.”   Since his “forced exit from his workshop,” Richard added, Tom “has grown distant, is very confused, and expresses continued sadness over his job loss.  His identity, and work community, have been lost, through no fault of his own but by virtue of a policy shift for which I am at a complete loss to understand.”

The effort to close the workshops has been driven by an extreme anti-congregate care ideology that the Patrick administration subscribes to.  Simply because a group of disabled people work together in sheltered workshops, the administration considers it to be a “segregated setting.”  As a result, we are concerned that despite the budget language allowing those who are currently  in workshop programs to remain in them, people like Tom Urban, who have lost their workshop programs or are seeking for the first time to get into one will find not be able to do so.  Last year, the administration announced it would no longer allow new referrals to sheltered workshops in the state as of this past January.

In addition, the FY 2015 budget contains at least two reserve funds totaling $3 million to support the transfers of persons from sheltered workshops to provider-run day programs and unspecified job training programs.  While the administration contends that intellectually disabled people will all be able to reach their potential in mainstream or “integrated” work environments, there is  uncertainty over how many mainstream jobs really exist for most people with developmental disabilities, and many questions about what integrated employment really means.

Sheltered workshops have won a welcome reprieve in Massachusetts, but their future still remains uncertain; and also uncertain are the long-term prospects of fulfilling work activities for thousands of people with developmental disabilities in the state.

 

 

 

The endless shuffle continues for the DDS national background check bill

Does anyone in the state Legislature or the Patrick administration really want to set up a national background screening process for people hired to work with the intellectually disabled in Massachusetts?

Apparently not.

Everybody likes to talk about how important it is to protect the most vulnerable among us from abuse and neglect. Yet the Legislature has been unwilling for years to pass national background check legislation, and the administration has been unwilling even to apply for federal funds that are available under ObamaCare to implement a national background check program.

So far this year, there’s not much reason to think anything is going to change, though there is always a faint hope.  This year’s version of the national background check bill (H. 4125) was approved by the Judiciary Committee in late May after the measure had languished there for nearly a year and a half. But it was sent as usual to the House Ways and Means Committee. Every time the bill has been sent to House Ways and Means, it has died there.  For years, the bill has been on an endless shuffle between these two committees.

Another piece of bad news for the legislation this year is that the only elected official in Massachusetts who has ever made a recognizable and visible effort to promote it is Martin Walsh, who is now mayor of Boston and no longer in the House of Representatives.   For years, as a state representative, Walsh filed legislation to enact national background checks for Department of Developmental Services employees and employees of DDS corporate providers; and as recently as last July, Walsh testified in favor of his bill before the Judiciary Committee.

COFAR and a wide range of other advocacy groups for the developmentally disabled have long urged passage of the legislation.  But other than Marty Walsh, we see no elected officials who seem particularly interested in enacting this legislation.  You have to wonder why.  Is there a special interest group out there that we’ve never heard of that is working to keep this legislation bottled up?

The administration claims to be in support of the bill, but they have not testified in favor of it in recent years, and, as noted, have never applied for available federal funding to implement a national background check program in Massachusetts.  That funding, as noted, has been available under the Affordable Care Act since 2010.  In that time,  the federal Centers for Medicare and Medicaid Services has awarded more than $50 million to 24 states to design national background check programs.

National background checks involve matching a job applicant’s fingerprints against a federal database maintained by the FBI.  Every advocacy group for the disabled that we know of agrees that state-only background checks — which is what DDS currently does in Massachusetts — are not sufficient in screening applicants for direct-care jobs because those checks do not turn up convictions for criminal activity in other states.

Massachusetts has apparently not been a leader in background screening of people who work with other vulnerable groups either.  In January 2013, Massachusetts did enact a law requiring national background checks for school teachers and early education employees, but it was the last state in the nation to do so.

By the way, where are the candidates for governor and attorney general on this matter?

Please call the House Ways and Means Committee and ask them to finally approve H. 4125 and get it enacted;  and please call the governor’s office and ask them to apply for funding available to implement the program.

You can reach the Ways and Means Committee at (617) 722-2990, and the governor’s office at (617) 725-4005.