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

VOR Remembers Justice Ruth Bader Ginsburg

The following is a tribute from VOR, a Voice Of Reason, to Supreme Court Justice Ruth Bader Ginsburg who died last week at the age of eighty-seven. She was best known among disability advocates for her majority opinion in the 1999 ruling in Olmstead v. L.C.. The Court determined that under the Americans with Disabilities Act, states must move people with disabilities to community settings if treatment professionals determine that such a placement is appropriate, if the individual does not oppose such a move and if the placement can be “reasonably accommodated.” 

VOR is a national organization that represents people with intellectual and developmental disabilities (IDD) and their families, including people with severe to profound IDD, many of whom live in Intermediate Care Facilities for Individuals with Intellectual Disabilities, ICFs/IID. VOR played a key role in Olmstead by submitting an amicus brief that was quoted by Justice Ginsburg that made it clear that at times the "most integrated setting" for an individual may be an institution.

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VOR Remembers Justice Ruth Bader Ginsburg 

“Fight for the things that you care about, but do it in a way that will lead others to join you.” - Ruth Bader Ginsburg

It is with great sadness that VOR mourns the passing of Supreme Court Justice Ruth Bader Ginsburg, and with great joy that we celebrate her life and the gift that she gave to our families and our loved ones with intellectual and developmental disabilities.

We wish to thank Justice Ginsburg for having heard our voice, and for having included an amicus brief submitted by VOR in her opinion attached to the Court’s landmark ruling in Olmstead: 

“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.” - Olmstead v. L.C., 527 U.S. 581, 605 (1999)(quoting Brief of VOR et al., as Amici Curiae at 11)

The Olmstead decision is often misrepresented as an ‘integration mandate’, but that’s not true. By including the ideas of VOR and others in her opinion, Justice Ginsburg declared Olmstead a mandate for choice.

141 organizations and family groups signed on in support of VOR’s brief, which was written and submitted on our behalf by Attorney Bill Burke, with input and guidance from VOR's past presidents Polly Spare, Marilyn Straw, and Mary McTernan, Government Affairs Director Tamie Hopp, attorney Sam Golden, and other members.

Justice Ginsburg taught us that if we persist, and if we unite with others to strengthen our voice, our voice can be heard - from the homes of a few concerned families, all the way to the highest court in the land.

Justice Ginsburg left us with many memorable quotes. Here are two, both relevant to VOR's cause and our mission:

“You can disagree without being disagreeable."

"Real change, enduring change, happens one step at a time.”

For more information on the Olmstead Decision, please visit our website at:
https://www.vor.net/get-help/more-resources/item/olmstead-resources-2

"I would like to be remembered as someone who used whatever talent she had to do her work to the very best of her ability."
Supreme Court Justice Ruth Bader Ginsburg, 1933 - 2020

VOR, "a Voice Of Reason", comments on a National Council on Disability report on guardianship, Part 2

The National Council on Disability (NCD) Report, "Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities”, is over 200 pages long and contains historical as well as current information on guardianship. To simplify and focus VOR's response, VOR comments on the seven findings from the report.

The NCD admits from the outset that there is a lack of reliable and comprehensive data on guardianship that makes it impossible to know for sure whether systemic reforms are necessary. This caveat, however, does not prevent the NCD from making recommendations for reform. Part 3 of The DD News Blog comments on the report will cover more information about the NCD and the philosophical underpinnings of the movement to replace guardianship with Supported Decision Making and other alternatives.

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VOR Comments on the Seven Findings of “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities” 

Finding 1: There is a lack of data on existing guardianships and newly filed guardianship. 

VOR agrees with this finding and the recommendation to “develop initiatives to produce effective and comprehensive data on guardianship”. We recommend that data should also be collected on the welfare of persons who have been removed from the protections of court-ordered guardianship. 

This finding supports a conclusion that without more reliable and complete data on guardianship, it is not possible to determine whether systemic reforms are needed. Evidence is also lacking that would support the limiting of guardianship or the wholesale replacement of guardianship with Supported Decision-Making or similar alternatives. 

Finding 2: People with disabilities are widely (and erroneously) seen as less capable of making autonomous decisions… 

VOR disagrees with the above statement, especially the word, “erroneously”. It may be true that some people with disabilities are incorrectly assumed to be unable to make autonomous decisions. Others, especially those with profound and severe intellectual disabilities and other complex medical and behavioral conditions, are indeed incapable of making decisions for themselves in some or all aspects of their lives. When necessary, they should be afforded the due process protections of guardianship to assure that their interests and rights are protected. 

In recommending that the DOJ [U.S. Department of Justice] should issue guidance to states on their legal obligations under the ADA [Americans with Disabilities Act] in regards to guardianship, it is not clear what the NCD has in mind or how much control the federal DOJ has over state court-appointed guardianships. Unfortunately, the ADA and the 1999 Supreme Court Olmstead decision interpreting the federal anti-discrimination law have been widely misinterpreted to require that services be provided in the “community”. They have been incorrectly used to limit the choices and range of services available to people with I/DD. 

Guardianship may be inappropriate for some people with disabilities, but a finding that an individual lacks the capacity to make informed decisions and needs the protection of guardianship is not in itself discrimination. 

Olmstead does not address guardianship or other forms of surrogate decision-making. The 2014 Home and Community-Based Settings Rule, however, confirms the authority of state courts to appoint guardians to represent people with disabilities: “We note that where a legal guardian, conservator, or other person has the sole authority under state law to make decisions related to the individual’s care, the state must comply with the decisions of the legal surrogate.” [p. 2995 of the Federal Register of 1/16/2014; Definition of Individual’s Representative] [emphasis added]. 

The recommendation that DD Councils, Universities of Excellence in Developmental Disabilities, and Protection and Advocacy organizations should work to avoid guardianship ignores the recognition of individual needs, including the possible need for court appointed guardianship. 

Finding 3: People with disabilities are often denied due process in guardianship proceedings. 

VOR believes that the vast majority of Probate Courts and state guardianship laws assure due process when properly enforced. We would appreciate any information on courts that do not adhere to this standard. 

Finding 4: Capacity determinations often lack a sufficient scientific or evidentiary basis. 

VOR believes that this finding is a broad generalization and is not accurate. Requests for guardianship usually include statements from qualified physicians along with other information on the functioning abilities of the individual and recommendations on the need for guardianship. Recommendations and observations by parents and other family caregivers as to the functioning abilities of the individual should be included in assessments for guardianship. 

Finding 5: Guardianship is considered protective, but courts often fail to protect individuals. 

VOR believes this statement is overly broad and subjective. Most states require reports from guardians on the condition of the person under guardianship, and many require additional oversight of guardianship cases. 

We agree with the recommendation for appropriate levels of oversight and regulation of professional and public guardians. 

Finding 6: Most state statutes require consideration of less-restrictive alternatives, but courts and others in the guardianship system often do little to enforce this requirement. 

VOR believes that for people who can make decisions for themselves, less restrictive alternatives to guardianship should be available, based on the needs and desires of the individual. The recommendation to “use SDM [Supported Decision-Making] and the court systems to restore people’s rights”, even for people with severe intellectual disabilities, is questionable. Restoration of rights must consider the capacity of the individual to make decisions in some or all aspects of the person’s life and whether guardianship is needed to ensure a person’s safety, health, and general well-being. SDM has not been proven to be an effective method to replace guardianship and could instead place the person in harm’s ways. 

Finding 7: Every state has a process for restoration, but this process is rarely used and can be complex, confusing, and cost-prohibitive. 

VOR believes that this finding may or may not be true, given that, “Data on restorations is seriously lacking, making it impossible to tell how many individuals are in unnecessary guardianship…”[page 167 of the Report]. There must be recognition that ending guardianship for some people may be fraught with unintended and harmful consequences. For an individual who has undergone rigorous assessments on his/her ability to make decisions, and has been found unable to do so, assessments would either have to show that the initial assessment was incorrect or that changes in the person’s decision-making abilities no longer support a need for guardianship. 

For the most part, the federal Protection and Advocacy system opposes guardianship on an ideological basis rather than following its mandate to consider and protect the rights of individuals with developmental disabilities. We believe that to encourage P&A organizations to continue on this path with extra funding to remove individuals from guardianship would be a poor use of federal funds.

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VOR Comments Part 1

Olmstead Resources

Celebrating the 17th Anniversiary of the Olmstead Decision: Opportunities and Choices

Guardianship vs. Supported Decision Making

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."

Organizations supporting a full range of services and residential options: "one size does not fit all"

The following is a letter dated 4/10/18 addressed to officials at the U.S. Department of Health and Human Services from over 60 community organizations and advocates for people with developmental and intellectual disabilities. It is in response to demands from HCBSadvocacy.org, representing 20 organizations, that would force almost all adults with intellectual and developmental disabilities (I/DD) into small, dispersed residential and vocational settings. Congregate settings that serve more than three or four people with disabilities together would generally no longer be eligible for Home and Community-Based Services (HCBS) funding – whether or not those are appropriate or desired by Medicaid Waiver recipients. [Special Medicaid waivers fund Home and Community Based Services for people with developmental and other disabilities.] HCBS is regulated by the federal Centers for Medicare and Medicaid Services (CMS).

Here are the email addresses of people who received the letter, in case others wish to follow up with their own comments:

Secretary of Health and Human Services Alex Azar: Secretary@hhs.gov

Administrator Seema Verma: Seema.Verma@cms.hhs.gov

Calder Lynch: Calder.Lynch@cms.hhs.gov

Vu Ritchie: vu.ritchie@cmas.hhs.gov

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April 10, 2018

Dear Secretary Azar, Administrator Verma and Mr. Lynch:

We are writing in response to the alarming demands for an expanded process of heightened scrutiny submitted by the Center for Public Representation and the National Health Law Program on behalf of twenty organizations (henceforth referred to as “the HCBS Advocacy Coalition”) determined to force all adults with intellectual and developmental disabilities (I/DD) into small, dispersed residential and vocational settings – whether or not those are appropriate or even desired by waiver recipients.

We applaud CMS’ desire to support adults with I/DD in community settings, and completely agree that those who want to live and work in the greater community should receive whatever services they require to succeed. However, the campaign to solely fund small, dispersed, “integrated” settings is just as dangerous, paternalistic, and ideological as the forcible institutionalization of the mid-20th century to which it responds. We reiterate, because this one point should be sufficient to end this debate, that this is an ideological crusade rather than an evidence-based agenda: although the aforementioned advocates have long maintained that “studies” show that small, dispersed settings are best for adults with I/DD, an independent review of the literature by Dr. David Mandell, ScD., Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, found that, although “decisions about [residential] care may have the most profound effect on well-being and happiness…our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data.”

Not only is there no scientific evidence behind the one-size-fits-all model of residential and vocational supports, but the lack of more intensive, structured settings for our most impaired adults has resulted in catastrophic consequences. Mandell notes that “today, media exposés of abuses in community settings rival those of psychiatric hospitals a generation before.” Recent investigations of group homes in New York, Chicago and Philadelphia found rampant abuse and neglect in small, dispersed settings that, as Mandell reports, “often are not up for the task of caring for individuals with more profound impairments.” Undoubtedly, it was his fear of exactly these outcomes that motivated Justice Anthony Kennedy to warn, in his concurring opinion to the 1999 Olmstead decision, “It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 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.”

But this debate isn’t just about those with the most severe intellectual and developmental disabilities. Many Americans choose to live with peers in retirement, religious and ethnic communities – there’s even an “adult dorm” in Syracuse for lonely Millennials. It is only when adults with I/DD choose to live and work with their peers that opponents claim these settings are “isolating” and “segregating” – resulting in the heartbreaking irony that adults with I/DD represent the only population in this country denied the civil right to decide where and with whom they live, and that this outcome is largely due to the influence of groups allegedly concerned with preserving the rights of the disabled. It is the height of arrogance for the HCBS Advocacy Coalition to insist it knows what’s best, even as applications pile up for new projects like First Place in Arizona, which consists of 55 apartments for adults with autism, and the 97-unit The Arc Jacksonville Village in Florida. We encourage you to visit these communities, as well as others all over the country whose names and contact information we would be happy to provide.

On a practical level, the more elaborate process of heightened scrutiny demanded by the HCBS Advocacy Coalition would devour the time and funding of already stretched agencies. Almost two hundred thousand individuals with I/DD were on waiting lists for Medicaid long-term supports and services as of June 2015. [emphasis added] We need to foster a creative environment in which adults with I/DD and their families are encouraged to work with providers to develop the environments they want. What we absolutely do not need is a landscape dominated by even more bureaucratic obstacles.

Importantly, this vision is very much in line with the Final [Settings] Rule as it was originally articulated by CMS. It acknowledged that regulations should be more “outcome-oriented…rather than based solely on a setting’s location, geography, or physical characteristics.” Secretary Price and Administrator Verma similarly emphasized the need for choice in their March 14, 2017 letter to the states’ governors, in which they expressed their commitment “to a new era for the federal and state Medicaid partnership where states have more freedom to design programs that meet the spectrum of diverse needs of their Medicaid population.” They noted that the states “are in the best position to assess the unique needs of their respective Medicaid-eligible populations and to drive reforms that result in better health outcomes.”

It is in line with these priorities as articulated by your own agency – as well as by the ADA and the Olmstead decision – that we ask you to retract the contradictory guidance that stigmatized farmsteads, gated communities, clustered housing and, more generally, all disability-specific settings as “isolating.” Not only does Federal law support the right of choice, but the concept of person-centered planning on which our system of service delivery is based mandates that these important decisions be made exclusively by waiver recipients and their families, from the most expansive range of home and workplace settings possible.
We look forward to participating in this critical conversation. 

Correspondence may be addressed to Amy Lutz via email at amy@easifoundation.org or by mail to EASI Foundation, P.O. Box 351, Villanova, PA 19085. 

Best, 

Together for Choice (NV)

Autism Science Foundation (NY)

ACCSES (DC)

VOR (IL)

Autism New Jersey (NJ)

Madison House Autism Foundation (MD)

EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled (PA)

Bergen County United Way (NJ)

Advocates for Community Choice (MO)

Special Moms Network LLC (NY)

...and many more

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See the original 4/10/18 letter for complete information on references and the list of organizations signing on.

HCBSadvocacy.org

Olmstead Resources

The Federal Government's Quiet War Against Adults with Autism 

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

A Disability Organization Misleads Self-Advocates and Families to Promote a Call-in Campaign to Legislators

TASH, an influential disability organization that “advocates for human rights and inclusion for people with significant disabilities and support needs - those most vulnerable to segregation, abuse, neglect, and institutionalization”, recently sent out this Action Alert to self-advocates and families:

January 25, 2018

Dear Self-Advocates and Family Members,

We need you to take action right now! Our representatives and senators are hearing from Voice of the Retarded (VOR) and other parent groups that believe we should live in institutions and that the community is not a safe place for us to live. We need to tell them that the community is not bad and there are safe places. We need to tell them that there are many people with disabilities living in the community that are safe and happy, and have the support they need. So please ask your groups to do the following: 

• Call your legislators and tell them about how you live in the community and how you are happy. 
• Ask your members and other people with disabilities to write and share their story. 
• Go visit your legislators and tell them how important community is to you and how happy you are, along with many other people with disabilities that are happy in the community. 
• Share this alert with others and ask them to do the same. 

Please email your letters to Tia Nelis, TASH's Director of Policy and Advocacy, at tnelis@tash.org.

Thanks,
TASH's Self-Advocacy Committee

As a parent of two sons with profound intellectual and developmental disabilities and as a member of VOR for more than 15 years, I am compelled to respond to the TASH Action Alert to correct misleading information and to stop the misuse of that information to promote a call-in campaign to legislators.

VOR’s Name

The name of VOR is VOR ! The organization was founded in 1983 as “Voice of the Retarded” at about the same time that TASH was changing its name from “The Association for the Severely Handicapped” to “The Association for Persons with Severe Handicaps”. As the terms mentally retarded and the word handicapped were used less frequently, the terminology in federal law began to change. Most disability organizations removed the word "Retarded" from their names and from the discussion of issues related to this segment of the developmentally disabled population.

"The Association for Persons with Severe Handicaps" eventually became TASH, just as "The Association for Retarded Citizens" became The ARC, and "Voice of the Retarded" became VOR. I believe VOR started using the acronym for the organization as its primary identification more than 10 years ago and the name was officially changed with the passage of Rosa’s Law in 2010. Rosa's Law removed the term mental retardation from most federal legislation and substituted the term intellectual disability. The definition did not change, however, and Rosa’s Law did not affect any services, rights, responsibilities or educational opportunities for people with intellectual disabilities.

Institutional vs. Community Living

To say that VOR believes that people with disabilities “should live in institutions and that the community is not a safe place for us to live” is false and misleading. A Policy and Position Statement is on the VOR Website that includes these statements:

“VOR supports both ICF/IID homes and quality community-based service options based on individual need. VOR advocates for the right of individuals with intellectual and developmental disabilities and their families to choose from a full array of high quality residential and other support options including own home, community-based, and large settings, such as licensed Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID)." 

and

“VOR supports safe and appropriate quality care in the community. When federally-licensed specialized settings (e.g., ICF/IID) are closed, individuals with profound I/DD, multiple disabilities, serious medical problems, and behavior challenges are removed to 'community-based' settings often with poorly trained staff and inadequate health and safety measures in place. Individuals with severe disabilities living at home or in other community settings often experience the same problems with poor care. By developing and promoting community care standards, VOR aims to address this widespread concern and avoid predictable tragedies, as reported in the media, state audits and peer-reviewed studies.”

Furthermore, VOR’s position on institutional care is consistent with the 1999 U.S. Supreme Court Olmstead decision. The importance of individual choice is repeated throughout Olmstead’s majority opinion as follows: “We emphasize that nothing in the ADA [Americans with Disabilities Act] 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.”..."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 some individuals, no placement outside the institution may ever be appropriate.”..." 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.”

Safety in the Community

Safety in the community for people with disabilities is of paramount importance to most people with disabilities and their families. In January 2018, The U.S. Department of Health and Human Services, the Administration on Community Living and Office for Civil Rights issued a joint report on an investigation of community group homes. According to Disability Scoop in an article about the joint report, “An audit of three states found that officials routinely failed to follow up on incidents ranging from head lacerations to loss of life in violation of federal and state policy. The issues are believed to be systemic affecting people with developmental disabilities residing in group homes across the country.”

In other living situations where people with disabilities live in unlicensed and poorly supervised settings and without sufficient support services, incidents of abuse and neglect occur, but they often go undocumented.

While VOR is concerned with safety in all settings where people with disabilities live and receive services, VOR has never claimed that safety does not exist nor that it is not possible in community settings.

The TASH Action Alert

There is nothing wrong with self-advocates and families telling legislators “how important community is to you and how happy you are, along with many other people with disabilities that are happy in the community,” but the implication in this Action Alert is that VOR is a threat to community living. On the contrary, VOR supports a full array of services and residential, employment, and educational options to meet the needs of a diverse population.

TASH owes an apology to its members, especially to self-advocates and families, whom the organization has misinformed. I hope that, at the very least, future pronouncements by TASH will be checked more closely for accuracy and will avoid unfounded accusations about other organizations.

Jill Barker
Ann Arbor, Michigan

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About TASH

About VOR

VOR Olmstead Resources

"Celebrating the 17th Anniversary of the Olmstead Decision: Opportunities and Choices"

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