Friday, May 4, 2018

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.

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.


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.

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