Forced de-institutionalization of people with DD: lives lost and lives disrupted

The following is an article is from The Voice: News and Views of VOR Supporters for Spring 2018. 

VOR is a national non-profit organization funded solely by dues and donations. It receives no government support. VOR represents primarily individuals with intellectual disabilities and their families and guardians.

Throughout its history, VOR has been the only national organization to advocate for a full range of quality residential options and services, including own home, family home, community-based service options, and licensed facilities. VOR supports the expansion of quality community-based service options; it opposes the elimination of the specialized facility-based (institutional) option.

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U.S. House of Representatives - Judiciary Committee, Subcommittee on Constitution and Civil Justice Hearings: Examining Class Action Lawsuits Against Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) 

On March 6th, 2018, the House Judiciary’s Subcommittee on Constitution and Civil Justice convened to examine the harmful effects of class action lawsuits aimed at closing Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF's/IID). The hearing came at the request of Judiciary Committee Chairman Bob Goodlatte (R-VA). and was chaired by Rep. Steve King (R-IA).

Martha Bryant, Mother, RN, BSN & VOR member, Caroline Lahrmann, Mother, VOR State Coordinator for Ohio & past president, and Peter Kinzler, Father, longtime VOR Member, Director & Legislative Committee Chair testified against class action lawsuits. Alison Barkoff of the Center for Public Representation and the Consortium for Citizens with Disabilities, spoke on behalf of those in favor of using class action lawsuits against ICF's/IID and opposed having to provide notification to families and guardians of individuals residing in these homes who would become part of the class.

First to testify was Martha Bryant, a constituent of Congressman Goodlatte who spoke about her son Tyler. Tyler and his brother Taylor were the two surviving brothers of a triplet pregnancy and were born prematurely at 29 weeks. Tyler had severe physical and intellectual disabilities, functioning at the level of a 15-20 month old baby. He was non-verbal and non-ambulatory. His condition required ICF-level care which he had received at Central Virginia Training Center (CVTC) for most of his life.

With complete disregard for his needs, Tyler was forced from his home at CVTC on Jan 17, 2017 as the result of a class action lawsuit initiated by the [U.S.] Department of Justice (DOJ). Tyler was moved to an inadequate and inappropriate non-ICF facility 139 miles away without his mother’s consent, and with no regard for her objections or guidance about the needs of her sons. Tyler could not tolerate the transfer. He was sent to the hospital where he spent 49 days, most of those in the ICU. Less than two months after his transfer, Tyler died in the Richmond hospital alone, more than 100 miles away from his mother who was not present at the time. She was notified of his passing by phone. [emphasis added]

The committee then heard from VOR’s Caroline Lahrmann, the mother of severely intellectually and physically disabled twins who reside in a private ICF in Ohio. Mrs. Lahrmann gave testimony about the class action suit initiated by her state’s Protection and Advocacy agency (P&A) - Disability Rights Ohio (DRO) - aimed at closing all of the state’s public and private ICF’s and uprooting 5,900 people with I/DD from their homes and forcing them into HCBS-waiver settings. The suit would treat all of these 5,900 individuals as if they were one and the same, with the same needs and levels of disability as the six people chosen by DRO to be named parties in the suit. Mrs. Lahrmann quoted from Olmstead to describe the manner in which DRO’s lawsuit violates the spirit and letter of that decision. DRO’s lawsuit has cost the families who oppose it over $100,000 to date. These families are forced to fight against being named as participants in a class action suit that is the antithesis of their wishes for their loved ones. She went on to say that the ability to opt out of these suits is not sufficient, that this type of class action suit should be prohibited on the grounds that, “P&A’s bring class actions against Medicaid accommodations that are needed and chosen by their own clients.” [emphasis added]

Opposition testimony was then provided by Alison Barkoff, a long-time professional advocate for the waiver system who favors closing all ICF’s. Ms. Barkoff told of her family’s refusal to put her brother into an ICF forty years ago, and their struggle to provide for him for years before he was able to receive supplemental at-home services. Her testimony contended that she has seen people leave ICF’s and thrive in the community. She praised the class action suit that resulted in the death of Tyler Bryant for having given community services to the son of a woman named Brenda Booth, who refused the care offered by the state of Virginia in an ICF in favor of waiting for community placement. Ms. Barkoff spoke of “expansion of services” without acknowledging that this expansion in one sector, waiver-based care came at the cost of ICF level care within the system. She did not mention the people who have suffered trauma and death by being displaced from their homes – only of those who have received services as a result of these actions. Rather than advocate for more funds and more services, her approach is to take from one group of people and give to others, and to use expensive class action suits as the way to enact that redistribution of services. [emphasis added]

VOR’s Peter Kinzler was the last to testify. He is the father of Jason, 42, who functions at the intellectual level of a 6-month old and requires 24/7 care for all aspects of living. For 37 years, Jason received excellent care at North Virginia Training Center. In 2016, NVTC was closed by a class action suit by DOJ, in accordance with their policy, “Community Integration for Everyone”. They did this under Federal Rule 23(b)(2) [regarding class action lawsuits], which swept all individuals residing in ICF’s into the suit, with neither advance notice nor the right to opt out. DOJ claimed to have consulted with “a whole laundry list" of people in the system. The only people not consulted were the families of the residents of the ICF. Despite near unanimous opposition by the families, DOJ went on with their case. They opposed the families motion to intervene in the case, forcing them to spend over $125,000 in legal fees. The judge then ignored the families’ opposition and accepted a settlement between the DOJ and the State of Virginia. Mr. Kinzler’s family was forced to choose between putting Jason in a group home forty minutes from his home or into an ICF 160 miles away. To make things worse, the closure timetable was not tied to the creation of resources sufficient to handle the displaced individuals. Such displacements have resulted in considerably higher rates of mortality among this fragile population. [emphasis added]

After testimony, Rep. Goodlatte, Rep. Cohen (D-TN), and Chairman King asked the participants a number of questions to illustrate the issues brought up in their testimony. Mr. Cohen asked Ms. Barkoff if there were protections for people who oppose class action suits. She insisted that these protections exist, making a bill that would allow families to opt-out unnecessary. Her response was in direct conflict with the experiences and testimony of Ms. Bryant, Mrs. Lahrmann, and Mr. Kinzler. Rep. Goodlatte asked Ms. Bryant if others who had been forced out of the CVTC had suffered or died as a result of their displacement. She stated that of the 42 people transferred into the community, Tyler was the tenth death that she knew about. When asked by Rep. Goodlatte about the importance of being able to intervene in these class action suits, Mrs. Lahrmann replied that the judge in her case told her that without the ability to intervene, she would have had no rights in the case in which her children were unwilling participants. [emphasis added]

Toward the end of the hearing, Rep. Goodlatte asked several questions of Ms. Barkoff that highlighted the inconsistencies in testimony. He asked if she was aware of any class actions P&A’s conducted against group homes. She skirted the question several times and never gave a direct answer. He went on to ask her if the P&A’s had an anti-institution agenda. She replied that in her opinion, they did not. He went on to say that the process as it exists, is inflexible and that it does not recognize the needs of people in ICF’s or their families, and that more protections were needed.

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The written testimony and the full video of the hearing is available here.

Here is a link to the hearing on YouTube. The hearing begins at 5:18.

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

From VOR, the best Website for Olmstead Resources: 

The Department of Justice (DOJ) recently recognized the 17th anniversary of the U.S. Supreme Court Olmstead decision by pointing out the strides that have been made in providing more opportunities for individuals with disabilities in mainstream American life. As we celebrate this aspect of the Olmstead decision, let us not forget the fullness of the ruling and the emphasis the Court placed on individual choice to protect health and safety and the basic rights of individuals with intellectual and developmental disabilities (I/DD). 

Too often, some disability rights advocates and federal agencies have read Olmstead as a mandate for all individuals with I/DD, regardless of their individual needs, to be served in community-only settings. Federal “Olmstead enforcement” activities are an example of how some have misread the Olmstead decision and the Americans with Disabilities Act (the ADA) to the detriment of the individual rights of those who were intended to be the beneficiaries of these landmark actions. Driven by the DOJ Civil Rights division and the Administration for Community Living (ACL) of the Department of Health and Human Services, these activities are aimed at eliminating opportunities for individuals with I/DD to live and work in more structured, congregate settings which provide higher levels of care, including nursing, therapy and behavioral supports. While community living may work well for many people who are capable of making decisions with a little help, congregate settings furnish life-sustaining services for those who need more care to assure their health and safety.

By closing down congregate homes and specialized work settings for individuals who choose and require these programs, Olmstead enforcement actions have had the effect of denying Americans with I/DD the freedom to choose where they live and work and with whom they associate, even going so far as to indicate just how many people with I/DD may live and work together in the same setting.

In pursuing its one-size-fits all agenda, the DOJ fails to appreciate that it is undermining its own recognition of the fact that people with I/DD are not a monolithic group and should be treated as individuals:

"...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,” (U.S. Dept. of Justice analysis of ADA)

Ironically, DOJ enforcement activities target the homes and workplaces of many of the most fragile individuals with disabilities, despite the Civil Rights Division’s pledge,

“to uphold and defend the civil and constitutional rights of all individuals, particularly some of the most vulnerable members of our society." (Emphasis added.)

These actions which restrict freedoms for people with I/DD are happening in direct contradiction to the law and Supreme Court decision that DOJ and ACL profess to be upholding. 

Fortunately, a fair and honest reading of Olmstead provides a path that maximizes the living and work options for individuals with I/DD. While encouraging the maximum community integration, Olmstead makes the individual with disabilities the ultimate arbiter of what she or he believes is best. The Court's respect for choice is recognized in the second prong of the holding which gives the individual the right to reject a placement, regardless of what anyone else thinks is best for her or him:

“(b) the transfer from institutional care to a less restrictive setting is not opposed by the affected individual,” Olmstead v. L.C., 527 U.S. 581, 587 (1999).

Justice Ginsburg expanded on the reason for this right in her majority opinion:

“...[N]othing 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." Olmstead, at 601 – 602.

Justice Ginsburg went to explain the ongoing role of large facilities in her concurring opinion:

“[For some individuals, no 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.’ ” . . . 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” Olmstead, at 605.

Sadly, the DOJ and ACL actions sweeping all individuals with I/DD into a monolithic group that can only be served in one officially sanctioned manner (i.e. small houses in urban settings) have led to tragic results for thousands of individuals with severe and profound I/DD, both in terms of quality of life and longevity of life. Investigative reporting by newspapers across the country (including The Washington Post and The New York Times) have documented the tragedies that have befallen people with I/DD when they have been forced out of their congregate care homes into a community unprepared to meet the health and safety needs required for their very survival.

Intermediate Care Facilities for individuals with Intellectual Disasbilities (ICF/IID), disability farms, intentional communities, sheltered workshops and facilty-based day programs all serve people with more intensive needs yet are labeled by the DOJ as "institutional" and out of compliance with Olmstead. Thus, the tragedy warned against by Justice Kennedy in Olmstead has come to pass:

“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.” Olmstead, at 610.

By focusing on the freedom of the individual to choose from a range of options, the ADA and the Olmstead decision reflect a uniquely American attitude toward services for the disabled, as well as the inherent goodness and compassion of the American people. Congress and the Supreme Court did not intend for the ADA and Olmstead to be used to eliminate opportunities and basic freedoms for our most vulnerable citizens. Rather, this law was meant to expand choices and protect rights.

The Congress must not allow DOJ and ACL to misuse Olmstead and the ADA to create a sub-class of American citizens whose personal lives are dictated by a one-way-suits-all lifestyle. As we celebrate the ADA and the anniversary of Olmstead, let’s protect and promote their full meaning so that all Americans with disabilities can live safe and happy lives of their choosing.

VOR is a national disability advocacy organization which supports a full continuum of quality care options for individuals with disabilities and individual choice of services. VOR supports community settings for those who choose and can benefit from them, but we also recognize and advocate for individuals with profound and other high needs who choose and require more intensive care in congregate settings.