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."

U.S. House Hearing on Class Action Lawsuits that are used to close Facilities for people with Intellectual Disabilities

The U.S. House of Representatives Judiciary Subcommittee on the Constitution and Civil Justice held a hearing on the use of class action lawsuits brought by government-funded agencies that often result in the closure of facilities for people with intellectual disabilities. Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) are medicaid-funded and highly regulated homes for tens of thousands of people with severe and profound disabilities. Parents and guardians whose family members live in these facilities were given a chance to voice their objections to lawsuits that include their family members against the wishes of the individuals and their families and without regard to the best interests of the individuals involved. Alison Barkoff from the Consortium of Citizens with Disabilities defends the use of class action lawsuits and represents many of the advocacy organizations that have been involved in promoting deinstitutionalization of all people with disabilities regardless of the severity or nature of their disabilities. 

This is from the VOR Website: 

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VOR Testimony at House Judiciary Committee Hearings 

On March 6th, 2018 the House Judiciary Committee convened to examine the harmful effects of class action lawsuits aimed at closing Intermediate Care Facilites for Individuals with Intellectual Disabilities (ICF's/IID). The hearing came at the request of Chairman Bob Goodlatte.

Testimony was presented by Martha Bryant, Mother, RN, BSN & VOR member, Caroline Lahrmann, Mother, VOR Ohio State Coordinator & past president, and Peter Kinzler, Father, longtime VOR Member, Director & Legislative Committee Chair. Alison Barkoff of the Center for Public Representation spoke on behalf of those in favor of using class action lawsuits against ICF's/IID and opposed to providing notification to families and guardians of individuals residing in these homes. 

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You can listen to the oral testimony at the Judiciary Committee Website or on Youtube and link to the written testimony by clicking on the names below.

At 19 minutes, begin testimony by Martha Bryant, mother and RSN, BSN, from Amherst County, Virginia.

At 24:50 minutes, begin testimony of Carolyn Lahrmann, mother and former president of VOR, from Columbus, Ohio

At 32 minutes, begin testimony of Alison Barkoff, sister and co-chair, from the Consortium of Citizens with Disabilities.

At 38 minutes, begin testimony of Peter Kinzler, father and attorney, from Alexandria Virginia.

Comments to the U.S. Department of Justice on the "Integration Mandate"

The U.S. Department of Justice recently issued a request for comments, in response to Executive Order 13777, which requires federal agencies to evaluate and implement measures to lower regulatory burdens on the American people. The Executive Order directs each agency's Regulatory Reform Task Force to identify regulatory actions that do the following:

• Eliminate jobs, or inhibit job creation;
• are outdated, unnecessary, or ineffective;
• impose costs that exceed benefits;
• create a serious inconsistency or otherwise interfere with regulatory reform initiatives and policies;
• are inconsistent with the requirements of the Information Quality Act (section 515 of the Treasury and General Government Appropriations Act, 2001, 44 U.S.C. 3516 note), or OMB Information Quality Guidance issued pursuant to that provision, in particular those regulations that rely in whole or in part on data, information, or methods that are not publicly available or that are insufficiently transparent to meet the standard for reproducibility; or
• derive from or implement Executive Orders or other Presidential directives that have been subsequently rescinded or substantially modified.

VOR, a national non profit organization that advocates for high quality care and the human rights of individuals with intellectual and developmental disabilities (I/DD), submitted comments on August 14, 2017, to the DOJ on policies regarding enforcement of the “Integration Mandate” of the Americans with Disabilities Act and the 1999 U.S. Supreme Court Olmstead decision. VOR believes policies from the DOJ wrongly impose an interpretation of the Integration Mandate that denies individual choice and need.

These comments are available on the VOR Website. The supporting references have been omitted here, but can be found in the PDF version of the document.

Americans with Disabilities Act regulations address General Prohibitions against Discrimination under the ADA. 

VOR Olmstead Resources

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August 14, 2017

Department of Justice Request for Public Comment: Enforcing the Regulatory Reform Agenda; Department of Justice Task Force on Regulatory Reform Under E.O. 13777

Introduction

VOR is a national non profit organization that advocates for high quality care and the human rights of individuals with intellectual and developmental disabilities (I/DD). Our members are primarily family members and guardians of individuals with I/DD who access state Medicaid long-term services and supports. Many of our members are on the severe and profound end of the disability continuum, some functioning at the level of a small child or infant. Their intellectual disabilities are often accompanied by complex physical and medical conditions and behavioral concerns. The disabilities of these individuals are such that many require and choose 24-hour supervision and nursing care and community integration found in Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) and similar facilities.

Regulatory Burden - DOJ’s Integration Mandate

DOJ Statement on Enforcement of the Integration Mandate of Title II of the ADA and Olmstead, June 22, 2011

DOJ Statement on Application of the Integration Mandate of Title II of the ADA and Olmstead to State and Local Governments’ Employment Service Systems for Individuals with Disabilities, October 31, 2016

The DOJ interpretation, enforcement, and application of the ADA and Olmstead wrongly impose an “Integration Mandate” that denies individual choice and need. The adverse affects of this policy is manifold:

1. Health and safety are placed at risk when DOJ’s “integration mandate” forces individuals against choice and need out of ICF/IID homes into small group homes without appropriate services, supports, and supervision. This policy acts counter to Olmstead.
2. For some individuals, community integration is placed at risk in a four person group home with only a 1:4 staffing ratio. Small settings do not have sufficient staffing and transportation resources to accompany severely and profoundly intellectually disabled individuals on outings. These individuals require 1:1 supervision in the community, and for some, nursing support.
3. Facility-based supported employment and day programming are placed at risk leaving individuals with disabilities who cannot perform competitive work without opportunities for skill development.
4. ICF/IID, sheltered workshop, and day programs employ experts in the care and treatment of I/DD. The development of this expertise and access to it is lost as congregate settings are closed.
5. The per person cost of care increases dramatically as congregate care is shut down as sharing of resources is limited in small HCBS waiver settings. Nursing, therapy, adaptive equipment, direct care, and transportation are shared in an ICF/IID. These services are separately contracted on an individual basis in waiver settings. Forcing complex needs people into community settings against choice has adversely affected Home and Community-Based Services (HCBS) Wait Lists . 
6. Access to appropriate medical care can be difficult to obtain in scattered small settings as few medical practitioners have experience in treating individuals with severe and profound I/DD.
7. Forcing individuals with I/DD into competitive employment against choice puts individuals with I/DD in risky circumstances as many private businesses are not set up to address maladaptive behaviors, personal care, special feeding needs, and medication administration. Employees of private businesses are placed in difficult situations if they are not trained to handle violent and other maladaptive behaviors, health issues such as seizures, and personal care needs.
8. Costly lawsuits brought by DOJ and Protection & Advocacy agencies (P&A) against state governments have cost millions in taxpayer dollars and resources at the federal and state level to litigate and defend against. Families fighting these lawsuits must fundraise to hire legal representation to ensure their loved ones interests are protected. The cost and worry these lawsuit inflict on law abiding Americans who already face a difficult road in life protecting their intellectually disabled loved ones is inhumane.

DOJ’s notion of an “integration mandate” emanates from: 28 C.F.R. § 35.130(d) A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities. A mandate conflicts with the requirement that integrated placements are “appropriate to the needs of qualified individuals with disabilities.”

The disability population is complex and diverse encompassing mental, intellectual, physical, medical and behavioral conditions. The Olmstead Court recognized this diversity, and therefore, cautioned and warned of the need for a range of settings, including institutional settings, throughout its majority and concurring opinions. Justice Ginsburg stated,

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle and benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” Olmstead 601-602

Therefore, the notion of an “integration mandate” defies Olmstead. It also defies DOJ regulation:

• 28 CFR 35.130(e)(1) Nothing in this part shall be construed to require an individual with a disability to accept an accommodation, aid, service, opportunity, or benefit provided under the ADA or this part which such individual chooses not to accept.
• 28 C.F.R § 35.130 public entities are required to ensure that their actions are based on facts applicable to individuals and not on presumptions as to what a class of individuals with disabilities can or cannot do. 

DOJ regulation defines an “integrated setting appropriate to the needs of an individual” to be:

28 C.F.R. Pt. 35, App. A (2010) (addressing § 35.130) 

i.e., in a setting that enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible, and that persons with disabilities must be provided the option of declining to accept a particular accommodation

DOJ’s June 22, 2011 guidance states that integrated residential settings are “scattered-site housing with supportive services” and that congregate settings are “segregated.”

DOJ’s October 31, 2016 guidance states that integrated work settings allow individuals “to work in a typical job in the community like individuals without disabilities” and that sheltered workshops are “segregated.”

DOJ fails to understand that just as beauty is in the eye of the beholder, integration is as well.

• A profoundly intellectually disabled young man in a wheelchair who has no concept of hazards cannot maneuver his wheelchair independently in the community, but can on his own in a large ICF/IID with long, wide hallways, no stairs to fall down, lots of areas to visit, and plenty of caregivers, visiting family members, and volunteers to keep a watchful eye on him. In a small community setting, this young man would find himself bumping into walls and furniture with his wheelchair.
• A severely autistic man prone to violent behaviors and elopement may be a danger to himself and others in a small setting. But, he may find more freedom and independence in a large facility with more staff on hand to support his behaviors, more places to visit and activities to engage in, and in many cases, large grounds on which to take recreation where he cannot harm others.
• A severely intellectually disabled woman with quadriplegia and a ventilator likely will not have sufficient staff to take her on outings if she lives in a four person group home with the typical 1:4 staffing ratio. She requires 1:1 supervision in the community and possibly nursing support.
• A severely autistic young lady with maladaptive behaviors may find a full work-day of supported employment daily in a sheltered workshop. This young lady may be too costly to employ in a community business and her behaviors too hazardous to herself and others which may severely limit the number of hours she is employable in the private sector.

Therefore, for some, a large ICF/IID provides more independence, freedom and community integration than a small community group home, and a sheltered workshop provides more hours of employment and integration than a competitive job. Integration is in the eye of the beholder.

It is for these reasons the Olmstead Court held,

"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 at 597 (Emphasis added.)

Informed Choice

DOJ’s guidance asserts a concept of “informed choice” and suggests that individuals and families have historically not acted in an informed way when they have chosen institutional placements. But, the ADA and Olmstead do not qualify the term “choice” by defining an informed or ill-informed choice. Doing so, would negate choice.

Throughout Olmstead’s majority and concurring opinions, the justices state the need for a range of facilities, recognize the right of an individual to oppose an accommodation, and establish a three-pronged test for community placement that incorporates individual need and choice. In doing so, the Olmstead Court emphasizes the rights of the individual with disabilities and the importance of health and safety. Olmstead states,

"For other individuals, no placement outside the institution may ever be appropriate." Olmstead 605 

“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.” Olmstead 605

“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 605

“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.” Justice Kennedy, Concurring Opinion, Olmstead 610

DOJ Actions

DOJ brings what it terms “Olmstead actions” against states to enforce its “integration mandate.” These actions are ostensibly aimed at expanding HCBS services, but have the effect of reducing the ICF/IID and sheltered workshop choice. To the extent that the DOJ is successful in intimidating states to force closures of ICFs/IID and sheltered workshops, these actions also have the effect of fundamentally altering a states’ service system, overriding the executive and legislative decisions of elected officials and the placement decisions of private citizens. Justice Ginsburg stated,

"Accordingly, we further hold that the Court of Appeals’ remand instruction was unduly restrictive. In evaluating a State’s fundamental-alteration defense, the District Court must consider, in view of the resources available to the State, not only the cost of providing community-based care to the litigants, but also the range of services the State provides others with mental disabilities, and the State’s obligation to mete out those services equitably." Olmstead 597 (Emphasis added.)

States are in a better position to know the needs of their fragile constituents, and therefore, federalism calls for decisions concerning the balance of service systems to be deferred to states to ensure the effective, compassionate, and efficient use of resources.

DOJ enforcement in relation to the make-up of state developmental disabilities (DD) service systems ignores the reality that these systems are overwhelmingly balanced in favor of community services. Exhibit A shows that ICF/IID care makes up just a fraction of DD service system capacity. Most states do not notify families of the ICF/IID choice in defiance of federal Medicaid law for fear of a DOJ or P&A action. As noted, the loss of a vital choice on the continuum of care has contributed to large HCBS wait lists that have grown dramatically for the reasons stated in Exhibit A.

Historically, individuals and their families accessing services at targeted facilities are overwhelmingly opposed to a DOJ action. Such actions impose an intense burden on families both in terms of emotional hardship, worry, and financial stress. Important accommodations which make life manageable for individuals with I/DD and their caregivers are callously put at risk with DOJ actions. Families must fundraise and expend significant resources to defend against DOJ actions as publicly funded legal assistance through the P&A program is not available from highly conflicted advocates who only advocate for people who can handle and benefit from community services. District Court Judge Leon Holmes best described the position of families in his Dismissal Order of a DOJ action,

“Most lawsuits are brought by persons who believe their rights have been violated. Not this one...All or nearly all of those residents have parents or guardians who have the power to assert the legal rights of their children or wards. Those parents and guardians, so far as the record shows, oppose the claims of the United States. Thus, the United States [Department of Justice] is in the odd position of asserting that certain persons’ rights have been and are being violated while those persons – through their parents and guardians disagree.” US. v. Arkansas, 4:09-CV-0033, Dismissal Order, June 8, 2011

Ignoring the careful and loving decision-making of families has come with tragic consequences. Justice Kennedy warned against just this in his concurring opinion in Olmstead,

“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, Concurring Opinion, Olmstead 610

The DOJ settlement agreement in Georgia was paused due to the high number of deaths resulting from DOJ’s integration mandate. Recent tragedies in Virginia connected to a DOJ settlement agreement have also caused alarm. See Exhibit B for a discussion on abuse, neglect, and death resulting from deinstitutionalization.

The threat of DOJ interference in a state can have serious ramifications for individuals with I/DD. P&A and DOJ activity in Illinois led to deinstitutionalization efforts, but the state was unable to fund and provide appropriate community supports. A recent Chicago Tribune investigation revealed that widespread abuse was occurring in Illinois’ community system while the state’s P&A was either unaware or did not address issues. See Exhibit B. It took newspaper reporters to bring the rampant mistreatment to light. Illinois’ P&A failed the fragile clients of Illinois’ community system. DOJ’s Statements of Interest filed in Illinois P&A actions helped to drive deinstitutionalization there before an adequate community service system was put in place.

Protection & Advocacy

VOR wishes to correct DOJ’s citation of the Protection & Advocacy statute in its June 22, 2011 guidance. The statute states, “the State shall have in effect a system to protect and advocate the rights of individuals with developmental disabilities.” 42 USC 15043. DOJ leaves out the qualifier “developmental” in its guidance.

Conclusion

VOR requests DOJ to honor individuals in their application of the ADA and Olmstead. Congress and the Olmstead Court did not mean for disability law to be feared by individuals with disabilities, as DOJ’s interpretation yields. Enabling community services for those who can handle and benefit from them should not come at the expense of more vulnerable individuals with I/DD who need and choose congregate care.

New York Minority Report on DD Services: Olmstead Misinterpretation

This is from the New York State Assembly minority task force report on the Olmstead Decision and its impact on the state's developmental disability community. The C.A.R.E.S. Plan (Championing Aid, Rights, Equality and Services) makes recommendations to correct the unintended consequences resulting from a misinterpretation of the 1999 Supreme Court Olmstead decision by the U.S. Department of Justice and the State of New York. 

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[pages 3-4 of the C.A.R.E.S. report]

OLMSTEAD MISINTERPRETATION 

On June 22, 1999, the United States Supreme Court held in Olmstead v. L.C. that unjustified segregation of persons with disabilities constitutes discrimination in violation of Title II of the Americans with Disabilities Act (ADA). The Court held that states are required to place persons with developmental disabilities in community settings rather than in institutions when (1) such community placement is appropriate; (2) the affected persons do not oppose the transfer from institutional care to a less restrictive setting; 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.

In 2009, President Obama directed federal agencies to vigorously enforce the civil rights of Americans with disabilities. Since then, the Department of Justice (DOJ) has made enforcement of the Olmstead Decision a top priority. As such, the DOJ has created a technical assistance guide to assist individuals in understanding their rights under Title II of the ADA and its integration mandate. However, when explaining what factors are relevant in determining whether an individual does not oppose an integrated setting, the DOJ simply states that in cases where the individual wishes to stay in an institutional setting, that such individuals who have been institutionalized or segregated have been given very little information and are unable to make an informed decision. Therefore, public entities must take “affirmative steps” to remedy this history of segregation regardless of the individual’s wishes to stay in institutionalized care.

The DOJ also states that segregated settings include, but are not limited to: (1) congregate settings populated exclusively or primarily with individuals with disabilities; (2) congregate settings characterized by regimentation in daily activities, lack of privacy or autonomy, policies limiting visitors, or limits on individuals’ ability to engage freely in community activities and to manage their own activities of daily living; or (3) settings that provide for daytime activities primarily with other individuals with disabilities. Therefore, any community service that provides day habilitation services for individuals with disabilities is considered segregation, according to the DOJ, and must be discontinued.

In October 2013, Governor Cuomo’s Olmstead Cabinet...released a report and recommendations titled “A Comprehensive Plan for Serving People with Disabilities in the Most Integrated Setting” which also ignores the second prong in the Olmstead Decision. The Cabinet made a blanket recommendation to “assist in transitioning people with disabilities into the community from developmental centers, Intermediate Care Facilities, sheltered workshops, psychiatric centers, adult homes, and nursing homes,” giving no deference to an individual’s wishes to stay in institutionalized care. In some cases, families have never been asked if moving their family member out of institutional care is even in the best interest of the individual.

This “one-size-fits-all approach” does not work in the developmental disabilities community as every person has different abilities and different wishes. Testimony was shared at each forum from people with disabilities currently employed at sheltered workshops and individuals expressed their passion for working there, seeing their friends, and receiving a pay check. If sheltered workshops are closed entirely, some parents of individuals with developmental disabilities are concerned that their child will not be able to be integrated into the community workforce since they will not be competitive with other available employees in the community. If sheltered workshops remain open, creating an integrated work environment, it will result in jobs being taken away from individuals with disabilities. At the Task Force forums, some individuals with disabilities stated that they prefer being with their friends in the sheltered workshops.

See also, "The Olmstead Decision Has Been Misinterpreted" from VOR

Oregon: Settlement of lawsuit will cut sheltered workshop placements

Update:

Oregon : Fairness Hearing scheduled on settlement agreement in Sheltered Workshop case

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This is from Disability Scoop, September 9, 2015:

"Settlement Calls for Cuts to Sheltered Workshops" by Shaun Heasley

Over 1,000 people with developmental disabilities will be able to leave sheltered workshops for competitive employment under a proposed settlement in a first-of-its-kind class-action lawsuit.

The U.S. Department of Justice said Tuesday that the state of Oregon has agreed to cut the number of adults working in sheltered workshops by nearly 400 and reduce hours worked in such settings by almost a third in the next two years.

Meanwhile, the state will provide 1,115 adults with developmental disabilities who are currently employed in sheltered workshops as well as 4,900 individuals with disabilities ages 14 to 24 with supported employment services so that they can obtain competitive employment over the next seven years.

The settlement comes in a 2012 case brought against top Oregon officials by residents with developmental disabilities and their advocates who alleged that the state violated the Americans with Disabilities Act by failing to provide supported employment services.
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In 2013, the Justice Department intervened in the case, now known as Lane v. Brown, and helped to broker the settlement agreement reached this week.

Read more… 

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There is more to this story... 
(from the VOR Weekly News Update, 9/18/15)
 
Most of the news articles describing the settlement of LANE, et al. v. BROWN, et al., [United States District Court Case No. 3:12-cv-00138-ST] refer to sheltered workshops or center-based work programs for people with disabilities only in pejorative terms. According to most of the media coverage, the existence of sheltered workshops force disabled people into menial, below minimum wage, jobs and isolate them from the rest of society.

For people who cannot work successfully in  integrated work settings, workshops provide jobs without the pressure of competing at the same level as those without disabilities. Individuals are paid based on how productive they are and usually receive other government benefits to supplement their incomes. These work centers often provide other services and socialization for people who would otherwise not have appropriate activities available to them. They also allow family caregivers to hold down jobs and otherwise live a more normal life outside of their care giving responsibilities.

For more on the unintended consequences of limiting access to these services, see The DD News Blog, including videos of interviews with people who work in sheltered workshops and their families.

The Disability Scoop article notes that a Justice Department fact sheet on the settlement says that the goal is not to shutter sheltered workshop placements, but to ensure that “those who want to work in integrated settings have a realistic opportunity to do so.”  The proposed settlement, however, has very clear guidelines setting arbitrary goals of reducing the number of people employed in sheltered workshops.

An article from Oregonlive.com, states that The United Cerebral Palsy Association of Oregon and Southwest Washington, along with eight individuals, sued the Governor of Oregon and top Department of Human Resources managers with the aim of putting an end to sheltered workshops.

In addition, there are no guarantees that people trained for supported employment in integrated settings will actually find or hold jobs, or that the state will allocate sufficient funding for these services.

The proposed settlement must be approved by U.S. District Court Magistrate Judge Janice M. Stewart:

"After notice to all class members, the Court will conduct a fairness hearing pursuant to Fed. R. Civ. P. 23(f) to decide whether the Agreement is a fair, adequate and reasonable resolution of the claims of the plaintiff class..."

We assume that information about when the fairness hearing will be held will be announced later. This is likely to be the only opportunity that individuals and their families who need and value sheltered workshop services will have to express their opinions about the details of the proposed settlement and how they will be personally affected. Without the representation of people who need sheltered workshop services in the negotiating process in class action lawsuits, there is no assurance that their individual rights to appropriate services will be protected. Their rights under the Americans with Disabilities Act as interpreted by the US Supreme Court Olmstead decision to “integration appropriate to the needs of the individual” and choice are also in jeopardy. [See “The Olmstead Decision has been Misinterpreted” from VOR.]

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More links to information at Disability Rights Oregon
U.S. Department of Justice Fact Sheet 
The Settlement Agreement

Georgia : Deaths following deinstitutionalization raise alarms and fears about the adequacy of community care

Tom Corwin and Sandy Hodson of The Augusta Chronicle wrote a series of articles on the transfer of people with mental illness and intellectual and developmental disabilities from state institutions to community placements. These transfers were done under a settlement agreement that Georgia reached with the U. S. Department of Justice in 2010 as part of the DOJ’s policy of aggressive enforcement of the Supreme Court 1999 Olmstead decision. Although the Olmstead decision determined that unjustified isolation is discrimination based on disability, it also recognized a role for institutional care and the necessity for the state to maintain a range of options for people with disabilities. It also required that people be removed from institutional care only when they do not oppose the transfer to community care.

The Olmstead decision has been widely misinterpreted as a mandate for community care for all.

The Augusta Chronicle discovered that nearly 1,000 patients had died in community care in the past two years and that a majority of the unexpected deaths were among patients with developmental disabilities. In this story, “Girl’s death among 500 in one year in community care”,  3/21/15, the reporters traced the fate of a 12-year-old girl removed from facility care against the wishes of her mother to an understaffed “host home”. This was followed by multiple hospitalizations, a broken leg, mismanaged medications, and finally her death. The mother demanded an autopsy but this was never done. Two months after the girl died, a cause of death had not been determined.

Follow the links to the other stories in this series. The reporters did an excellent job of putting together all the pieces and presenting them with attention to detail as well as giving an overall perspective on the problems in Georgia with community care and the agencies that are supposed to protect the health and safety of vulnerable people.

2013 Violent Crime Rates against People with Disabilities more than twice that for Non-disabled

A report released by the U.S. Department of Justice Bureau of Justice Statistics (BJS) on 5/21/15 states that:

“VIOLENT CRIME RATE IN 2013 AGAINST PERSONS WITH DISABILITIES WAS MORE THAN DOUBLE THE AGE-ADJUSTED RATE FOR PERSONS WITHOUT DISABILITIES”

Here are excerpts from the report:

These findings are based on BJS’s National Crime Victimization Survey (NCVS), which classifies disabilities according to six limitations: hearing, vision, cognitive, ambulatory, self-care and independent living.

• Persons with cognitive disabilities experienced the highest rate of violent crime (67 per 1,000) among all disability types measured, similar to previous years.
• Serious violent crime—rape or sexual assault, robbery and aggravated assault—accounted for a greater percentage of all violent crime against persons with disabilities (39 percent) than persons without disabilities (29 percent). Nearly a quarter (24 percent) of violent crime victims with disabilities believed they were targeted due to their disability.
• About 51 percent of violent crime against persons with disabilities involved victims with multiple disability types in 2013.
• Nearly half (48 percent) of violent crime against persons with disabilities was reported to police in 2013, similar to that reported for persons without disabilities (44 percent). The reasons persons with disabilities did not report the crime to police were because they dealt with it in another way (44 percent), they believed it was not important enough (21 percent), they believed police wouldn’t help (19 percent) or other reasons (38 percent).
• Nonpolice victim services agencies served more violent crime victims with disabilities (12 percent) than violent crime victims without disabilities (8 percent) in 2013.

VA plans to close facilities for DD as numbers on waiting list soar

An editorial from the Lynchburg Virginia News Advance questions the wisdom of the state legislature failing to address the concerns of parents and guardians of Virginia’s four remaining residential “training centers” [Intermediate Care Facilities for Individuals with Intellectual Disabilities or ICFs/IID].

“The training center closings result from a consent decree Virginia, under the administration of former Gov. Bob McDonnell, entered into with the U.S. Justice Department, which has been pushing states to care for its disabled citizens in community-based group homes, rather than in residential hospital-type settings. In the 2012 settlement, it is important to note that the Justice Department did not require the closing of Virginia’s four training centers; rather the state chose to go that route to come up with the money for group homes.” [emphasis added]

Most of the remaining residents in the facilities have the most intense needs and include people who have profound physical, mental, and behavioral disabilities. Under the terms of the Department of Justice settlement, these people would be moved to community settings where they would theoretically receive the exact level of care that they now receive  at less cost to the state:

“Except — and here’s the scary part for guardians and families — the needed group home infrastructure in the commonwealth simply does not exist. Currently, there are thousands of people on the state’s waiting list for a group home spot. And that waiting list has only grown in the three years since the McDonnell administration decided to embark on the closure of the training centers, a path chosen because Richmond didn’t want to spend any additional money to build out the group home network before the training centers would close.” [emphasis added]

The editorial board asks, “To all its foes — from the Assembly Democrats and Republicans to the McAuliffe administration, we ask this question: Are you too tightfisted to care properly for the least among us?…Time and again, though, the answer has been yes.”

"Ideology trumps logic" in care for DD

David Kassel at The Real Choices in Care Blog has a lot to say about the extreme ideology of some disability advocates who oppose all congregate care for people with developmental disabilities. In his post "How Ideology trumps logic in the care of the developmentally disabled", 8/20/13, he observes that "according to the ideology, any care setting for the developmentally disabled that serves more than two or three disabled people at one time is now considered to be 'segregated' because it separates those people even momentarily from the 'community.'   No consideration is given here to the consequences of basing policy on this ideology or what the recipients or their families want or think. "

He goes on to note that for these advocates, closing developmental centers all over the country over the objections of families and guardians is not enough:

"Farming programs for the developmentally disabled must be shut down.  Sheltered workshops must be eliminated. Nursing homes that provide expert care for the disabled are seen as no different than nursing homes that do not have that expertise.  And group homes that house more than three people must be closed.   They are all potential congregate care settings and therefore too 'institutional' for the good of the people who participate in them or are served by them."

The ideology of these groups has permeated government agencies at all levels, including the Centers for Medicare and Medicaid Services and the U.S. Department of Justice. Only the assertion that "segregation is discrimination" is taken into account, often without evidence that any individual has actually been discriminated against (either forced into or prohibited from participating in a program or activity against the individual's will based on the person's status as a disabled person). Often the only criteria sited for establishing discrimination is that the person associates or lives with other people who are disabled. 

This is an ideology that unnecessarily causes suffering for both the individuals in need of specialized care and their families. Kassel includes a statement in his blog post from a father whose daughter lives at a specialized nursing facility in Massachusetts. He and other families lived in fear for years that their loved ones with extensive medical needs would be removed from the care they needed because of a lawsuit that has finally been resolved: 

"The (Seven Hills Center) families spent hundreds of hours in meetings and seeking out legislators to attempt to find someone to stand up for their children. Several of the parents sought medical help due to the increased anxiety and stress from the case. When their children died due to the natural course of their many medical problems, we all mourned together. None of us would mourn for the self-righteous extremist opponents of congregate care who imposed this hell on us. Not one of those advocates has shown a single iota of concern for the well-being of our children, who are among the neediest individuals in this world. If any one of them has a conscience, they should be deeply ashamed. We have never heard the slightest word of apology from them."

In the world in which many of these disability advocates live, there is no need to make distinctions between good care and bad, between differences in people that make congregate care not only necessary but desirable for some, but not for others, or to consider the potential harm in the policies they promote. All they know is that they know best and they are right. What a wonderful fantasy that must be.

VOR on Defining "Community"

[VOR is the only national organization that supports a full array of residential and support options for people with developmental and intellectual disabilities. This is one of the policy papers that members of VOR are distributing to Congress this week for its Washington Initiative.]

June 10, 2013 
Integration or Isolation? 
Defining “Community” Beyond Bricks and Mortar

VOR calls on Congress to investigate the absurd federal policies which define “integration” and “community” so narrowly that peoples’ homes, good care, happiness and safety are threatened. 

The Department of Justice’s (DOJ) regulations reasonably state that the Americans with Disabilities Act’s (ADA) “integration mandate” requires that “individuals with disabilities interact with non-disabled persons to the fullest extent possible.” Unfortunately, DOJ and other federally-funded entities have enforced this “integration mandate” irrationally to mean little or no interaction with other disabled persons, even if that results in less interaction with non-disabled persons! This approach violates the careful balance the Supreme Court reached in the Olmstead case, which interpreted the ADA to require community integration if people were capable of living in the community, but reserved the individual right to remain in congregate care and specifically recognized that some people needed such care. Sadly, the result of this ideological approach has been the forced removal of thousands of individuals with intellectual, developmental and other disabilities from true communities and into isolation.
 
Why must disabled people endure a different standard of community than other populations and society in general? Seniors enjoy the companionship and shared interests in retirement communities and college students find community in dormitory living. In a similar situation involving people with hearing disabilities, the U.S. Department of Housing and Urban Development (HUD) is challenging a housing community in Arizona that was designed around the specific needs of deaf and hard-of-hearing seniors: 

“Designed by a deaf architect to fit the needs of the deaf, its units have video phones and lights that flash when the phone or the doorbell rings. Wiring in common areas pipes announcements made through loudspeakers into residents’ hearing aids. The complex, meant to foster a sense of community among residents who use sign language to communicate and socialize, was . . .one that advocates for the disabled hoped would be a model for similar projects.” (“A Haven for the Deaf Draws Federal Scrutiny Over Potential Discrimination,” New York Times (April 28, 2013))

HUD is alleging federal discrimination on the grounds that the housing complex serves too many deaf and hard of hearing people and not enough people without hearing disabilities. 

Congress must investigate and act. Integration policies are forcing many disabled people into isolation and dangerous situations and the blind fervor in which these actions are being pursued is frightening. People with all types of disabilities – intellectual, developmental, autism, and hard of hearing – have been removed or face removal from their homes simply because they live with other disabled people:

• DOJ has pursued 40 actions to enforce the ADA’s Integration mandate to require that “individuals with disabilities to interact with non-disabled persons to the fullest extent possible.” Most of these cases aim to close ICFs/IID or other facilities.
• The HHS Centers for Medicare & Medicaid Services (CMS) has proposed new regulations which, if adopted, will change how “community” is defined for people with I/DD in the Social Security Act’s Medicaid Home and Community-Based Services (HCBS) programs (see, CMS-2249-P2, May 3, 2012). The proposed rule would require the HHS Secretary to begin with a “rebuttable presumption” that certain settings are not “community,” including homes on or near public and private facility campuses and “disability-specific housing complex[es].” This proposal threatens innovative housing complexes and planned communities for people with I/DD, autism, and other disabilities.
• The National Council on Disability (NCD) defines any home of 4 or more people as an isolated institution that should be closed (“Deinstitutionalization: Unfinished Business,” October 2012).

Case Studies: Real people are being impacted

Mary: “I’m not lonely anymore.” That is how Mary describes her new living situation. Mary has a hearing impairment and she resides in a subsidized housing complex with 69 other residents who are also deaf or hard-of-hearing. 

Integrated or isolated?
According to HUD, Mary is isolated because she lives in close proximity to disabled people (New York Times (April 28, 2013)).

Mark has multiple disabilities, including autism, is prone to wandering out of his home but has little sense of danger and is prone to outbursts. His mother keeps buzzers around her home to keep Mark safe. “If he goes out of the door, then we and God and everyone else can hear it because it is so loud,” she said. “But it is exhausting. It is intensely stressful and it’s very exhausting.”
 
Integrated or isolated?   
According to DOJ and some HHS agencies, Mark is integrated because he is surrounded by nondisabled people.

Brian, age 42, experiences dangerous behaviors. When living in his family home, he injured every family member and they replaced hundreds of windows. Brian was expelled from four community homes in two states before receiving appropriate care in a state-operated Medicaid-certified facility (“ICF/IID”). 

Integrated or isolated?
The DOJ and DD Act programs support the closure of Brian’s ICF/IID home, calling it isolated because he shares his home with other disabled people, and instead support his return to a more “integrated” community where he would be with nondisabled people.

Conclusion 
 
Although it is nearly impossible to develop a bright line rule for what constitutes “integration” versus “isolation,” our federal government persists in the implementation of a hard line rule relating only to the number of disabled people living in close proximity. Such a narrow interpretation fails to appreciate the true community that exists in most specialized housing options for people with disabilities, as well as actual interaction with nondisabled people. Many ICF/IID homes, for example, especially those in urban areas, have ratios as high as 4 volunteers to each resident. Other ICFs/IID share campuses with community groups, school groups, host special events, and otherwise open campuses to many visitors in any given day. In every way, these and similar housing arrangements for disabled people are integrated; they are “community.” 

Read the full document here with footnotes