What's old is new again: Regulating community services for people with disabilities: a promise fulfilled or a barrier to appropriate services?

This is a post from The DD News Blog for August 12, 2018. Not much has changed since then, with the exception of a worldwide pandemic that killed over a million people in the US and revealed serious inadequacies in the country's healthcare system. It also shined a light on the heroics of healthcare workers on the front lines of the pandemic, who, at first had the admiration and respect of the public. Later, they suffered abuse from the misdirected anger of a portion of the public stirred up by conspiracy theories about the virus and vaccines. The system of care for people with I/DD and their families also suffered with programs closing, some temporarily, but others permanently. Severe work shortages, especially among direct service professionals, hampered an already distressed system, seemingly on the verge of collapse. We seem to be back, but not quite, to where we were when the whole thing began. 

This is a good place to start, heading into a new year with the same old controversies that must be resolved if we are going to rebuild a fair system that includes recognition of the full range of people served and the diversity of needs.

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Sunday, August 12, 2018

In 2014, the federal Centers for Medicare and Medicaid Services issued “the Settings Rule” as an attempt to regulate how and where Medicaid-funded Home and Community-Based Services (HCBS) are provided in community settings to people with disabilities. Although the settings rule is promoted as a policy of liberation to bring about “true” integration and inclusion of people with disabilities in community settings, the corollary to that is the assertion that the rule will free up funding to be redistributed, first by closing programs that some advocates argue no one wants or needs, and then to pay for services that the same advocates claim are "truly" inclusive.

Many I/DD advocacy groups, most notably those receiving federal funding under the federal Developmental Disabilities Act, oppose all “congregate” programs that serve more than 3 or 4 people with intellectual and developmental disabilities (I/DD) together. Rather than emphasizing the individual right to appropriate services and the requirement that “a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities…” [emphasis added], many advocates promoting the Settings Rule have focused mostly on closing programs, thereby eliminating them as a choice for those who still want and need them.

To what extent is implementation of the Settings Rule improving the lives of people with I/DD? Or is it just an excuse to reduce or eliminate programs for people with the highest support needs in hopes that others can benefit from the redistribution of precious Medicaid dollars?  Is it realistic to expect that the supposed cost-savings will pay for more and better services in the community? From the perspective of people with I/DD and their families who are losing programs they have relied on for years, the Settings Rule is seen as an excuse to de-fund needed services.

Judging from the promises made over many decades from advocates and government agencies, that closing institutions would pay for more and better services in the community, it is highly doubtful that removing people from institutions (or from settings that are too "institutional in nature” under the Settings Rule) will generate significant savings to pay for adequate services for everyone else.

As advocates and government agencies pursue their dream of closing all institutions, as well as eliminating specialized group settings for people with disabilities, they avoid the obvious question of how much more money must be put into the system to meet the needs of people with I/DD and where will it come from? It means confronting politically unpopular ideas, at least unpopular with most current elected officials, such as boosting Medicaid funding to pay for more and better services. Efforts to stabilize the workforce of direct service providers by providing them with a living wage and better working conditions and linking the funding of services with needs established by well-written individual service plans could improve both the quality of services and accountability to people with disabilities and to taxpayers.

This dilemma - justifying program closures with promises of future savings to pay for community services - was recognized by a fervent proponent of deinstitutionalization Sam Bagenstos, a former Principal Deputy Assistant Attorney General in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases.  [He currently serves as general counsel of the US Department of Health and Human Services and is on leave from the University of Michigan Law School] In a 2010 Cardozo Law Review article, “The Past and Future of Deinstitutionalization Litigation”, Bagenstos admits that closing institutions has not resulted in sufficient services in the community to allow people with psychiatric and intellectual and developmental disabilities to flourish.

This is an excerpt from a 2013 article from VOR , “Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider”:

First, Bagenstos argues that one measure of the success of deinstitutionalization is the sheer numbers of people with I/DD who have been deinstitutionalized and the numbers of institutions that have been closed since 1967:

"[D]einstitutionalization advocates have essentially won the old battles for the closing and downsizing of large state institutions for people with psychiatric and developmental disabilities . . . the population of state institutions now stands at approximately 16% of its peak, the population of state and local psychiatric hospitals stands at approximately 9% of its peak, and these numbers continue to decrease."

Bagenstos goes on to admit, however, that the political alliance between deinstitutionalization advocates and fiscal conservatives meant certain failure for the advocates’ second goal, “to develop an array of services and supports in the community to enable people with psychiatric disabilities or intellectual/developmental disabilities to flourish.”

It should not be surprising that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.

Even if some deinstitutionalization advocates were initially unaware that they had entered into a “devil’s bargain” with fiscal conservatives, unconscionably, closure efforts continued even after it became apparent that widespread tragedies were befalling fragile individuals with I/DD developmental disabilities in inadequate community settings.

Supporters of the HCBS Settings Rule seem to be making their promises of improved services and better lives for people with disabilities contingent on the idea that savings from the closure and elimination of specialized congregate (group) settings in the community will result in the redistribution of funds. It is politically easier for advocates to call for the closure of programs that do not meet their criteria of “true” integration and inclusion than to confront the reality that the community system of care for people with I/DD is underfunded and to a large extent broken. Many of the organizations promoting their interpretation of the Settings Rule also get a significant amount of funding from government agencies that fund programs under the DD Act. They know better than to bite the hand that feeds them by advocating for politically difficult but necessary solutions to the crisis in community care.

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See also,

“Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider” from VOR, 2013, including footnotes and references.

"What does the ADA Integration Mandate really mean?", The DD Newsblog, 4/10/16

Samuel R. Bagenstos, The Past and Future of Deinstitutionalization Litigation, 34 Cardoza L. Rev. 1 (2012)

VOR Comments on proposed rules on Discrimination in Section 504 of Rehabilitation Act of 1973

The Department of Health and Human Services has issued a proposed rule "Discrimination on the Basis of Disability in Health and Human Service Programs or Activities", intended to update, clarify, and strengthen the implementing regulation for Section 504 of the Rehabilitation Act of 1973. 

VOR contends that the policies of HHS, notably the actions taken over the years by the Administration for Community Living and several of the organizations they subsidize (including State P&As [a.k.a. Disability Rights] and DD Councils, University Centers for Excellence, and the National Disability Rights Network) have regularly committed acts of discrimination against those with the most severe and profound intellectual and developmental disabilities and their families.

Below is the text of the letter to HHS:

To: U.S. Department of Health and Human Services, Office for Civil Rights

Proposed new implementing regulations on Section 504 of the Rehabilitation Act of 1973: Non-discrimination on the basis of disability in Health and Human Services programs or activities.

VOR – A Voice of Reason advocates for a full continuum of care and a full array of residential services and employment opportunities for all people with intellectual and developmental disabilities and/or autism. We would like to remind HHS of the broad diversity that characterizes the individuals who make up this population, from those who need some assistance to function in society to those who cannot survive without 24 hour around-the-clock assistance.

For the past 25 years, HHS has pursued “inclusion for all” policies that VOR believes have left behind the most disadvantaged members of this community. Before you take another step to dismantle more of these programs, we would urge you to review the purposes of the ADA, the Olmstead decision and the real-world effects on the most vulnerable population that we believe has been demonstrably hurt and even died as a result of these policies. [Some disability organizations call for sweeping changes to close all residential programs and services that provide care in congregate settings serving more that 3 or 4 people with disabilities.] We urge you not to just count the number of large facilities closed and people moved into the community, but to assess whether their needs are being met, whether there are sufficient well-trained staff and the overall the quality of their lives, including the frequency of abuse and neglect and the mortality rates relative to their former homes.

The ADA recognized the harm that our society had done by institutionalizing people who were “different” and called for giving them opportunities to participate in mainstream activities. Olmstead properly implemented that policy by permitting two individuals who wished to leave an institution and move into a less restrictive environment to do so, recognizing that institutional care was, by definition, segregated care. At the same time, Justice Ginsburg recognized that the I/DD population varied widely and that, for some people, an institution was the least restrictive environment.

Since enactment of the ADA, government policy has helped thousands of people who were capable of living and prospering in the broader community to leave institutions and lead a more productive and filling life. The DD System overseen by HHS has played a major role s in helping people who seek care in less restrictive environments to transition into Home- and Community-Based Services (HCBS) settings or receive more at-home or own-home supplemental services. We applaud the success of these programs. At the same time, we have been concerned that this movement has ignored the reality that Justice Ginsburg recognized that some people can benefit most from institutional care and that ideological blinders have eroded another key component of the DD System – intermediate care facilities for people with intellectual disabilities (ICF or ICF/IID).

Part of the premise for pursuing the closure of ICFs has been the usually unspoken view that parents who choose ICF care for their loved ones are not acting in their best interest. Nothing could be farther from the truth. Being the parent or sibling of a child with severe or profound intellectual disability or autism presents a lifetime of tremendous challenges. Aside from the daily challenges posed by the child her/himself, one of the most difficult challenges is navigating the DD System. Parents and guardians try to make informed choices from a limited set of imperfect options. Most families’ first choice is to have their child live at home. As the child ages and new challenges emerge, the parents have to re-assess those options, often choosing a small privately operated group home. If and when the group home system fails to meet their child’s needs, they usually seek a higher level of care in a larger congregate setting. Unfortunately, our system usually makes this difficult decision even more difficult to realize. Federal and state policies favoring HCBS care over the years have reduced the number of available beds in ICFs and created a two-tiered system, favoring HCBS funding and decreasing funding for the ICF system. While many proponents of HCBS’ inclusionary policies see this as progress, the families that rely on ICF services feel they have been victims of discrimination by their own community and by the very systems that have been put in place to serve them.

ICFs are not for everyone. Most people do benefit from some form of HCBS service. But not everyone. Larger congregate care facilities offer an economy of scale, allowing them to have 24/7 nursing, doctors on campus Monday – Friday and on call nights and weekends, dental clinics, psychiatric services and behavioral specialists, physical therapy, music therapy, swimming, and other services and amenities, most of which cannot be offered in a small group home. ICFs are more highly regulated by CMS and certification is far tougher than it is for HCBS services. Also, ICFs are required to offer active treatment, which may or may not be offered in group homes, but is not required. For people whose existential needs exceed their desire for acceptance by the non-disabled community, ICFs are essential.

Section 504 prohibits discriminatory acts in health care and human services, including denying qualified individuals the opportunity to participate in or benefit from federally funded programs and services. ICFs are federally approved, federally funded residential facilities. Many states have closed admission to these facilities, or ceased to create new opportunities to receive care in these facilities in favor of moving individuals to HCBS services. We contend that Section 504 must protect the right to care in ICF settings as well as in HCBS settings.

This discrimination has become accepted by all but those who need this level of care. The governors of several states have closed ICFs based on the biases of those who portray the ID/A population as a monolithic group that always benefits from community living. Presidential administrations have endorsed this ideology. The Department of Justice, too, has brought lawsuits, closing facilities for not meeting these arbitrary standards.

The bias in favor of HCBS care was memorialized on April 18, 2012, when the Administration on Developmental Disabilities and other agencies were combined into the Administration for Community Living (ACL). Over the past decade, ACL has pursued an ideology of “everyone does better in the community” that ignores the fact that many of those with severe and profound I/DD and autism cannot. As a result of this directive, ACL has funneled millions of dollars into state DD Councils and state Protection and Advocacy agencies (P&A). These agencies have targeted ICFs, launching far more on-site investigations in these facilities than in group home environments, and using federal funds to initiate class action suits aimed at closing ICFs (Illinois, Ligas v. Maram, and Ohio, Ball v. Kasich to name just two. In both of these cases, the court found for the families defending ICF care, but at a huge personal cost to the families involved).

In addition to funding the National Association of Councils on Developmental Disabilities (NACDD) and the National Disability Rights Network (NDRN), the ACL provides funding for the Association of University Centers on Disabilities (AUCD). The AUCD conducts studies on matters affecting people with I/DD and autism, but usually limits the topics of their studies to those which will point to successful outcomes of programs initiated by the ACL. They have not conducted studies on mortality rates of people who have been forced out of their ICF homes of thirty or forty years when state governors have acted, either independently or at the direction of the state P&A or DOJ lawsuits, to close these facilities. They have not attempted to document the outcomes of people who have been forced out of sheltered workshops and 14(c) employment opportunities and wind up in day programs with no work, no pay, and no options, and forced into an even more segregated community with a cohort of more severely disabled individuals.

Discrimination against the neediest people with ID/A also applies to employment opportunities. Employment facilities licensed under provisions of Section 14(c) of the Fair Labor Standards Act, aka sheltered workshops, have been under attack by many of the same groups that advocate for the closure of ICFs. Without these programs, most of those who participate in them would be left without daytime activities as the reality is that they cannot perform to a level that warrants paying them the minimum wage. Ideological dogma cannot change reality. Despite the fact that these are voluntary programs, and the fact that they are enthusiastically approved by a vast majority of those who participate in them (97%), non-participants with high acuity, non-intellectual disabilities, federal and state agencies, and federal and state legislators have been calling for these programs to be phased out and eliminated. Furthermore, we would contend that the states that have ended their 14(c) programs have already committed discriminatory acts against people with intellectual disabilities and autism, by denying qualified individuals the opportunity to participate in or benefit from federally funded programs, services, or other benefits. If we are indeed to rectify this discrimination, should we not insist that those states re-open access to 14(c) programs?

The normalization of these discriminatory policies by HHS also gives license to the Congress to enact legislation that further discriminates against the neediest component of the ID/A population. The continuing enactment of legislation that either increases funding for HCBS services only or establishes a favorable funding formula for those services instead of ICF services is yet another way that HHS is complicit in undermining services for those who need them the most. Advocating and supporting these discriminatory policies gut a federal program that remains on the books and provides valuable and often essential service. At the same time, it has not met its practical goals – to provide more money and better services for people who reside in HCBS facilities. It is past time for HHS to return to the basics of the ADA and Olmstead – to insure that individuals with ID can choose where they wish to live and to advocate for what is best for the individuals, as determined by them and their families and guardians, not by lawyers and professional advocates.

The Supreme Court’s 1999 decision in Olmstead is often cited as a mandate for inclusion by self-advocates, well-endowed advocacy organizations, and government agencies. As indicated above, that is not what the decision says. Olmstead protects choice in its three-prong test and specifically acknowledges the need for “institutional” care, i.e. intermediate care facilities, in some circumstances. Justice Ruth Bader Ginsberg cited an amicus from VOR in her decision, stating, “Each disabled person is entitled to treatment in the most integrated setting possible for that person—recognizing that, on a case-by-case basis, that setting may be in an institution.” [1]
The Court was very clear that Olmstead was not to be viewed as a one-dimensional “inclusion mandate”, recognizing the need for States to maintain a range of facilities for the diverse needs of persons with developmental disabilities:

"Unjustified isolation, we hold, is properly regarded as discrimination based on disability. But we recognize, as well, the States' need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities, and the States' obligation to administer services with an even hand." [2]

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. . . Nor is there any federal requirement that community - based treatment be imposed on patients who do not desire it." [3]

"[U]nder Title II of the ADA, States are required to provide community-based treatment for persons with mental disabilities [1] when the State's treatment professionals determine that such placement is appropriate, [2] the affected persons do not oppose such treatment, 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." [4]

"As already observed [by the majority], the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk. . . Some individuals . . . may need institutional care from time to time 'to stabilize acute psychiatric symptoms’. . . For other individuals, no placement outside the institution may ever be appropriate...for these persons, institutional settings are needed and must remain available." [5]

To be clear, we understand that we are asking the very agencies that created these policies and discriminated against those with the most severe and profound levels of I/DD and autism to cease these discriminatory practices. But, before you move further down this path, we ask you to look at our families and our loved ones through our eyes for a few moments:

Having a child with a severe or profound intellectual disability or autism involves a lifetime of extremely difficult choices. Our families ask for your help and support in making the best choices, from a full range of high-quality options, not from a rigid ideology that does not comport with reality. We ask for this support from those in government who oversee the DD system and provide those services, and from the community of people with I/DD and autism and their families, who should be the first to empathize with our challenges and provide emotional support. It’s time we end the discrimination against those with the most severe intellectual and developmental disabilities and autism. These ideals should be at the heart of any re-assessment of Section 504.

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[1] Olmstead v. L.C., 527 U.S. 581, at 605
[2] ibid, at 597
[3] ibid, at 601-602
[4] ibid, at 607
[5] ibid, at 604-605

Regulating community services for people with disabilities: a promise fulfilled or a barrier to appropriate services?

In 2014, the federal Centers for Medicare and Medicaid Services issued “the Settings Rule” as an attempt to regulate how and where Medicaid-funded Home and Community-Based Services (HCBS) are provided in community settings to people with disabilities. Although the settings rule is promoted as a policy of liberation to bring about “true” integration and inclusion of people with disabilities in community settings, the corollary to that is the assertion that the rule will free up funding to be redistributed, first by closing programs that some advocates argue no one wants or needs, and then to pay for services that the same advocates claim are "truly" inclusive.

Many IDD advocacy groups, most notably those receiving federal funding under the federal Developmental Disabilities Act, oppose all “congregate” programs that serve more than 3 or 4 people with intellectual and developmental disabilities (IDD) together. Rather than emphasizing the individual right to appropriate services and the requirement that “a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities…” [emphasis added], many advocates promoting the Settings Rule have focused mostly on closing programs, thereby eliminating them as a choice for those who still want and need them. 

To what extent is implementation of the Settings Rule improving the lives of people with IDD? Or is it just an excuse to reduce or eliminate programs for people with the highest support needs in hopes that others can benefit from the redistribution of precious Medicaid dollars?  Is it realistic to expect that the supposed cost-savings will pay for more and better services in the community? From the perspective of people with IDD and their families who are losing programs they have relied on for years, the Settings Rule is seen as an excuse to de-fund needed services. 

Judging from the promises made over many decades from advocates and government agencies, that closing institutions would pay for more and better services in the community, it is highly doubtful that removing people from institutions (or from settings that are too "institutional in nature” under the Settings Rule) will generate significant savings to pay for adequate services for everyone else. 

As advocates and government agencies pursue their dream of closing all institutions, as well as eliminating specialized group settings for people with disabilities, they avoid the obvious question of how much more money must be put into the system to meet the needs of people with IDD and where will it come from? It means confronting politically unpopular ideas, at least unpopular with most current elected officials, such as boosting Medicaid funding to pay for more and better services. Efforts to stabilize the workforce of direct service providers by providing them with a living wage and better working conditions and linking the funding of services with needs established by well-written individual service plans could improve both the quality of services and accountability to people with disabilities and to taxpayers.

This dilemma - justifying program closures with promises of future savings to pay for community services - was recognized by a fervent proponent of deinstitutionalization Sam Bagenstos, a former Principal Deputy Assistant Attorney General in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases. [This is the same Sam Bagenstos who is running for the Michigan Supreme Court in the November 2018 election.] In a 2010 Cardozo Law Review article, “The Past and Future of Deinstitutionalization Litigation”, Bagenstos admits that closing institutions has not resulted in sufficient services in the community to allow people with psychiatric and intellectual and developmental disabilities to flourish.

This is an excerpt from a 2013 article from VOR , “Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider”:

First, Bagenstos argues that one measure of the success of deinstitutionalization is the sheer numbers of people with I/DD who have been deinstitutionalized and the numbers of institutions that have been closed since 1967:

"[D]einstitutionalization advocates have essentially won the old battles for the closing and downsizing of large state institutions for people with psychiatric and developmental disabilities . . . the population of state institutions now stands at approximately 16% of its peak, the population of state and local psychiatric hospitals stands at approximately 9% of its peak, and these numbers continue to decrease."

Bagenstos goes on to admit, however, that the political alliance between deinstitutionalization advocates and fiscal conservatives meant certain failure for the advocates’ second goal, “to develop an array of services and supports in the community to enable people with psychiatric disabilities or intellectual/developmental disabilities to flourish.” 

It should not be surprising that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.

Even if some deinstitutionalization advocates were initially unaware that they had entered into a “devil’s bargain” with fiscal conservatives, unconscionably, closure efforts continued even after it became apparent that widespread tragedies were befalling fragile individuals with I/DD developmental disabilities in inadequate community settings. 

Supporters of the HCBS Settings Rule seem to be making their promises of improved services and better lives for people with disabilities contingent on the idea that savings from the closure and elimination of specialized congregate (group) settings in the community will result in the redistribution of funds. It is politically easier for advocates to call for the closure of programs that do not meet their criteria of “true” integration and inclusion than to confront the reality that the community system of care for people with I/DD is underfunded and to a large extent broken. Many of the organizations promoting their interpretation of the Settings Rule also get a significant amount of funding from government agencies that fund programs under the DD Act. They know better than to bite the hand that feeds them by advocating for politically difficult but necessary solutions to the crisis in community care.

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See also, 

“Will it be different this time? Deinstitutionalization’s Past: A Reason to Pause and Reconsider” from VOR, 2013, including footnotes and references.

"What does the ADA Integration Mandate really mean?", The DD Newsblog, 4/10/16

VOR documentation of "Widespread Abuse, Neglect and Death in Small Settings Serving People with Intellectual Disabilities - 2015 to Present" 

Samuel R. Bagenstos, The Past and Future of Deinstitutionalization Litigation, 34 Cardoza L. Rev. 1 (2012)

Justice Kennedy - A Moderating Influence for Choice in the 1999 Olmstead Decision

VOR is a national nonprofit advocacy organization that has for 35 years supported the right of individuals with intellectual and developmental disabilities (I/DD) to receive services and supports according to their individual choice and need, regardless of setting.

Below is a post from the VOR FaceBook page, 6/27/18, commenting on Justice Kennedy's resignation from the Supreme Court and his importance as a moderating influence on the 1999 Olmstead decision. 

Many federally funded advocacy groups and agencies have misinterpreted Olmstead as a mandate for "Community Integration for Everyone" . In Olmstead, the Supreme Court did not prohibit institutional care for those who need it or attempt to define or delineate the types of settings that are permitted or prohibited under the Americans with Disabilities Act. To the contrary, Olmstead recognized the need for States to maintain a range of facilities for the diverse needs of persons with developmental disabilities: "Unjustified isolation, we hold, is properly regarded as discrimination based on disability. But we recognize, as well, the States' need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities, and the States' obligation to administer services with an even hand." Olmstead v. L.C., 527 U.S. 581, 597 (emphasis added) 

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VOR comment on the resignation of Justice Kennedy:

With Justice Kennedy's resignation as a Supreme Court justice, I wanted to post part of the Olmstead Decision ruling, that also quotes part of the Amicus brief that VOR filed at that time. The Olmstead Ruling ensures choice for our individuals to live in the least restrictive environment for their needs. It does NOT mean everyone has to live in a community setting.

Here is part of the ruling, and something we need to continue to share with legislators, some who still do not know and understand the real meaning of Olmstead.

"However, a majority of Justices in Olmstead also recognized an ongoing role for publicly and privately operated institutions: 'We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.'" Id. at 601-602.

A plurality of Justices noted: “[N]o placement outside the institution may ever be appropriate . . . ‘Some individuals, whether mentally retarded or mentally ill, are not prepared at particular times - perhaps in the short run, perhaps in the long run - for the risks and exposure of the less protective environment of community settings ’ for these persons, ‘institutional settings are needed and must remain available’” (quoting Amicus Curiae Brief for the American Psychiatric Association, et al, [including VOR]). “As already observed [by the majority], the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk... ‘Each disabled person is entitled to treatment in the most integrated setting possible for that person—recognizing on a case-by-case basis, that setting may be an institution’[quoting VOR’s Amici Curiae brief].” Id. at 605.

Justice Kennedy noted in his concurring opinion, “It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 (ADA) to be interpreted so that states had some incentive, for fear of litigation to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.” Id. at 610."

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See also, VOR Olmstead Resources.

VOR comments on the 17th (2016) anniversary of Olmstead:

"Recently, the Department of Justice (DOJ), and the Administration for Community Living (ACL) issued press releases celebrating the 17th Anniversary of the Olmstead decision. VOR shares their view that there is much to celebrate in opening doors to community living for people with intellectual and developmental disabilities (I/DD) who are able and wish to take advantage of such opportunities. Unfortunately, their ideological preoccupation with one key part of Olmstead, community integration, at the expense of the other key part, choice, has reduced options for all people with I/DD. This crimped and, VOR would submit, inaccurate application of the plain language of Olmstead has done significant harm to many of our most disabled citizens.

"By insisting that all people with I/DD live and work in the community, the DOJ and ACL are treating people with I/DD as a monolithic group, not as the individuals they are. DOJ and ACL are substituting the wishes of the government for that of the person with I/DD or, where relevant, the legal guardian. While their policies have opened doors for the less severely disabled, they have closed important doors for the more severely disabled. Many of these individuals have lifelong needs that require a very high level of care, the kind often found only in public and private Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID), sheltered workshops, and facility-based day programs."

Update on Medicaid Home and Community-Based Services

The final implementation of the controversial 2014 Federal Home and Community-Based Settings rule has been delayed by the Centers of Medicare and Medicaid Services (CMS) until 2022, but that has done nothing too allay the fears of many people with disabilities and their families that it may be used as an excuse to discontinue funding for needed services and programs.

State Transition Plans (STP) are important for protecting the rights of people with disabilities to appropriate services in settings of their choice that assure integration into the larger community appropriate to the needs of the individual.

Michigan has identified settings that will undergo “heightened scrutiny” to assure that they meet the conditions of the settings rule before they are finally approved or rejected for HCBS funding. There are also grounds for legal challenges to the rule and commentary that explains why the Federal rule has been so controversial.

The following are links to resources and information to better understand what is at stake in the implementation of the federal settings rule:

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HCBS Advocacy

This is a Website supported by the Association of University Centers on Disabilities (AUCD).

From here you can find information regarding your state, including State Transition Plans that have received initial or final approval from CMS. So far only five states - Tennessee, Washington, Oklahoma, Kentucky, Arkansas - and the District of Columbia have final approval for their STPs.

According to HCBS Advocacy, although implementation of the rule has been extended to 2022, the deadline for final statewide transition plan approval is still March 2019.

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The Michigan Health and Human Services Website on the “Home and Community-Based Services Program Transition”

“As the Department develops new opportunities for stakeholders to provide feedback on this project, information about these events and opportunities will be published on this webpage. If you have any questions about this project, please send an email to HCBSTransition@michigan.gov.”

“Heightened Scrutiny”:

from CMS, “Home and Community-based Setting Requirements” - Heightened Scrutiny:

“Importantly, any setting regardless of location that has the effect of isolating individuals receiving Medicaid home and community-based services (HCBS) from the broader community of individuals not receiving HCBS is also presumed to be institutional, and therefore requires information from the state to overcome that presumption and describe how the HCBS settings requirements are met. States have an obligation to identify settings that are presumed institutional. …[The] final regulation …describes the process of “heightened scrutiny” that states can use to rebut or overcome this presumption. In particular, the regulations indicate that a settings described above “will be presumed to be a setting that has the qualities of an institution unless the Secretary determines through heightened scrutiny, based on information presented by the state or other parties, that the setting does not have the qualities of an institution and that the setting does have the qualities of home and community-based settings.”

Heightened Scrutiny in Michigan: 

In Michigan: Providers have been notified if they are subject to heightened scrutiny. Family members are encouraged to ask their provider about their status with regard to state implementation of the federal rule. 

from the HHS HCBS Transition Program:

“For those providers whom the department may submit for further review by the Centers for Medicare and Medicaid (CMS) there will be a public comment period. During this time all members of the public, including family members, will have an opportunity to share their opinions about whether the setting is home and community based. These comments will be taken into consideration before the department makes the final decision regarding submission to CMS.”

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May 9, 2017 letter from CMS extending the deadline for full implementation of the settings rule:

“Extension of Transition Period for Compliance with Home and CommunityBased Settings Criteria”

“In recognition of the significance of the reform efforts underway, CMS intends to continue to work with states on their transition plans for settings that were operating before March 17, 2014 to enable states to achieve compliance with the settings criteria beyond 2019. Consistent with the preamble language, states should continue progress in assessing existing operations and identifying milestones for compliance that result in final Statewide Transition Plan approval by March 17, 2019. However, in light of the difficult and complex nature of this task, we will extend the transition period for states to demonstrate compliance with the home and community-based settings criteria until March 17, 2022 for settings in which a transition period applies. We anticipate that this additional three years will be helpful to states to ensure compliance activities are collaborative, transparent and timely.”

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From Together For Choice Blog, 11/14/17: 

TOGETHER FOR CHOICE

Together for Choice Meets with CMS Administrator Seema Verma

"Together for Choice was invited to meet with Seema Verma, CMS Administrator, on November 1, to discuss the future of Medicaid. Approximately twenty other organizations participated in this invitation only meeting. The focus of the discussion was CMS’s Settings Rule which defines what constitutes a “community” setting and is therefore eligible for Medicaid waiver funding. I was the only person at the meeting who advocated for choice. I argued that the Settings Rule should be changed to honor the choices of individuals and their families regarding where to live and spend their days and to expand residential and day programming options. All of the other participants said that they did not want any changes to the Settings Rule or the CMS guidance under the Rule.

"Administrator Verma stated that she wanted Medicaid to be beneficiary focused and to put people first. She also said that she wanted to provide the states with more flexibility on administering Medicaid programs. In fact, she said that she wanted to give states an 'unprecedented level of flexibility.' She also acknowledged that individuals with disabilities receiving Medicaid should be viewed differently from non-disabled individuals receiving Medicaid. She wants the states to be creative and innovative in developing Medicaid programs and she repeatedly said that she wants less process and more focus on outcomes. In that connection, she said that CMS will be developing a Medicaid scorecard for states…

"Brian Neale, the head of Medicaid services at CMS also spoke. He indicated a preference for revising the CMS guidance to address the unintended consequences of the Rule rather than amend the Rule.

..."We will continue to advocate for choice by following up with Administrator Verma and Director Neale. Please join our voices to preserve choice and expand quality options by joining Together for Choice. Click HERE to join."

Scott Mendel
Chairman, Together for Choice

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Misericordia’s Developmental Training Program No Longer Subject to “Heightened Scrutiny”

2/2/2017

...“In early November, Illinois issued for public comment a draft of its transition plan. The plan listed all the facilities in the state that it believed should be subject to 'heightened scrutiny.' Misericordia’s DT program was one of the facilities on the list. The reason the state gave for subjecting Misericordia’s DT program to 'heightened scrutiny' was that it was located on a campus and was close to Misericordia’s ICF/DDs. We immediately asked all of our families with a family member living in a Misericordia CILA [Community Integrated Living Arrangement] (these are the individuals receiving “waiver” funding) to submit a public comment to HFS explaining how Misericordia’s DT program does not isolate their family member from the broader community.

• We asked each family to include in its comment: all of the activities their family member engages in both on and off campus to show how full and integrated their life is. 
• We asked the families to explain that their family member was engaging in the employment opportunities and other activities they choose. 
• We also had the families point out that the state was applying the wrong standard in deciding that DT should be subject to heightened scrutiny. 

"We explained that the rule (quoted above) does not require heightened scrutiny just because a setting is located on a campus and is close to an ICF/DD. In fact, the CMS rule says nothing about location. Instead, heightened scrutiny is limited to settings that isolate individuals. By having each family explain how their family member is not isolated, we were able to show that DT did not come within the settings that required heightened scrutiny.”…

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Legal Vulnerabilities of CMS’s Regulation of Home and Community-Based Settings 

from Covington and Burling, LLP, 1/17/17

“We believe that both the regulations and subsequent CMS guidance can be challenged as exceeding CMS’s authority. The effect of the regulations is to limit the choices of living situations for individuals with disabilities, and to replace the preferences of individuals, families and guardians with the preferences of CMS as to which setting best suits the needs of a particular individual.” 

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“The Federal Government’s Quiet War on Adults with Autism” 

by Jill Escher, 4/19/16

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The Coalition for Community Choice and the Madison House Autism Foundation have been following the implementation of the Federal settings rule since 2014. They have extensive knowledge of State Transition Plans and the effort to preserve innovative housing solutions for people with autism and other developmental disabilities. For questions, see contact information here.

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Another threat to replacing the preferences of individuals and their families and guardians with the preferences of CMS and federally-funded advocacy organizations, is the promotion of Supported Decision-Making (SDM). SDM is based on the belief that all people with disabilities can make and communicate decisions for themselves regardless of the nature or severity of their disabilities. Many SDM advocates refuse to acknowledge that disability can impair an individual's capacity to make decisions and they support the total elimination of guardianship. 

See Guardianship vs. Supported Decision-Making

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"The idea that one residential model is appropriate for the entire spectrum of intellectual ​and developmental disability — from college-educated self-advocates to profoundly impaired individuals at risk of detaching their own retinas or bolting into traffic — is patently absurd."

by Amy Lutz in "Myth - Truth", an article on Pennsylvania's proposed bill to close all Intermediate Care Facilities for Individuals with Intellectual Disabilities

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"VOR Celebrates the ADA and Recognizes the Full Meaning of the Olmstead Decision"

The Americans with Disabilities Act and the 1999 Supreme Court Olmstead decision protect people with disabilities from discrimination in their choice of residential settings, but they do not exclude the choice of institutional settings necessary for individuals to receive the services they need, nor do they ban congregate settings of more than 4 individuals with disabilities receiving services in a group setting.

See also, 

VOR Olmstead Resources

and

“The Olmstead Decision has been Misinterpreted”


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HCBS Update as a Word Document

The ADA and Olmstead Protect Individual Choice

This is an article by Carolyn Lahrmann, the President of the VOR Board of Directors and parent of two children with Intellectual and developmental disabilities. For more information, see  VOR Olmstead Resources.

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Olmstead Protects Individual Choice and Recognizes the Need for Higher Levels of Care

By Caroline A. Lahrmann

Individuals with intellectual and developmental disabilities (I/DD) are far too frequently finding life-sustaining services pulled out from under them by agencies charged with the duty to protect them – namely state departments of developmental disabilities and protection and advocacy organizations. They attempt to use the law as a weapon against the community of people with disabilities instead of the tonic it is meant to be.

These agencies tell the public and lawmakers wrongly, that the Americans with Disabilities Act (ADA) and the U.S. Supreme Court Olmstead decision require “de-institutionalization” and “community integration,” regardless of individual need and choice. We are told that “least restrictive environment” in all cases means small community settings, even when many individuals with I/DD cannot be safely served in such settings and/or they choose the higher level of care provided in large facilities, such as Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID), facility-based day programs and sheltered workshops.

Don’t be fooled by this deception, and don’t let your elected representatives be fooled either. Olmstead’s majority and concurring opinions take great care to stress that “institutions” such as ICFs/IID are a critical part of a range of services that a state must provide to meet the needs of the diverse community of people with mental disabilities. Olmstead recognizes that there are individuals who desire and require a higher level of care for whom “institutions” must remain available. Olmstead also states that the wishes of individuals are paramount in determining residential placement.

The importance of individual choice, including for some the choice of “institutional care,” is repeated throughout Olmstead’s majority opinion as follows:

“Such action (community placement) is in order when the State’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated taking into account the resources available to the State and the needs of others with mental disabilities.” (Emphasis added.)

“But we recognize, as well, the States’ need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities, and the States’ obligation to administer services with an even hand.”

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.”

“As already observed...the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk...Nor is it the ADA’s mission to drive States to move institutionalized patients into an inappropriate setting...”

“For other individuals, no placement outside the institution may ever be appropriate...for these persons, institutional settings are needed and must remain available.”

“For these reasons stated, we conclude that, under Title II of the ADA, States are required to provide community-based treatment for persons with mental disabilities when the State’s treatment professionals determine that such placement is appropriate, the affected persons do not oppose such treatment, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.” (Emphasis added.)

In his concurring opinion to Olmstead, Justice Anthony Kennedy warned against its misinterpretation, specifically pointing to state agencies. Kennedy states in Part I of his concurring opinion, which Justice Stephen Breyer joined, that:

“It would be unreasonable, it would be a tragic event, then, were the American with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”

Justice Kennedy then quotes from the majority opinion,

“Justice Ginsburg’s opinion takes account of this background. It is careful, and quite correct, to say that it is not “the ADA’s mission to drive States to move institutionalized patients into an inappropriate setting...” (Emphasis added.)

Justice Kennedy concludes,

“In light of these concerns, if the principle of liability announced by the Court is not applied with caution and circumspection, States may be pressured into attempting compliance on the cheap, placing marginal patients into integrated settings devoid of the services and attention necessary for their condition.” (Emphasis added.)

Justice Kennedy’s warning has sadly proven prophetic for developmentally disabled citizens around the country who have been forced out of their chosen ICF/IID homes, facility-based day programs and sheltered workshops because of real or perceived threats of litigation, oftentimes from federally-funded protection and advocacy agencies set up to protect our most vulnerable citizens.

Olmstead is not a decision to be feared by individuals seeking specialized services for their unique needs connected to their intellectual and developmental disabilities. Congress demonstrated this fact when it recognized the importance of considering individual choice based on need in ADA (Olmstead) enforcement activities in this December 2014 Report language to accompany the Consolidated and Further Continuing Appropriations Act of 2014:

"Deinstitutionalization.-There is a nationwide trend towards deinstitutionalization of patients with intellectual or developmental disabilities in favor of community-based settings. The Department [of Justice] is strongly urged to continue to factor the needs and desires of patients, their families, caregivers, and other stakeholders, as well as the need to provide proper settings for care, into its enforcement of the Americans with Disabilities Act."[Conference Report to accompany the Consolidated and Further Continuing Appropriations Act, 2014(for Commerce, Justice, Science, and Related Agencies, p. 17) (December 2014)].

Olmstead embraces options. Its careful and responsible findings respect the diversity inherent in the community of people with mental disabilities and seek to ensure that all people receive safe, appropriate, and individually-driven services.

Caroline A. Lahrmann

VOR State Coordinator Ohio
Disability Advocacy Alliance, Co-Founder