Robert Anthony, Ph.D.
September 9, 2014
Discussion of Findings (emphasis added)
Although this is a preliminary analysis and based on the limited data provided by Virginia for a September Work Group, these data are sufficient to derive estimates of Training Center [public Intermediate Care Facilities for Individuals with Intellectual Disabilities/ ICFs/IID] and community mortality rates for a population that initially all resided in Training Centers. Excluding the CVTC population from the estimation of mortality since it includes those at exceptional risk of dying, the estimated mortality in those transitioning to the community is double that of those who remained in Training Centers.
This remarkably higher mortality in the community might be partially explained simply by the risks of moving very vulnerable individuals into a new support system. However, a doubling of the mortality rate seems to be a very steep price to pay for this transition, and there is no assurance that this doubling will be a transient phenomenon.
Read full analysis here
On April 29, 2015, Mary Reese, VOR Board Member, represented VOR in testimony before the House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies. Consistent with VOR’s written testimony and the written testimony submitted by many VOR members and others, Mary asked the Committee “not for any money, but instead, that the appropriated funding be used as intended, according to the law, and in support of family values and choice.”
“VOR respectfully requests the Subcommittee's support for language in the HHS appropriations bill to prohibit the use of such appropriations in support of forced deinstitutionalization activities which evicts vulnerable individuals with profound disabilities from HHS licensed Medicaid facilities,” she states. “HHS funded deinstitutionalization, which target HHS funded and licensed homes, is an absurd and cruel use of federal funding.”
Read Mary Reese's Verbal Testimony Here
Read VOR's Written Testimony Here
VOR's strength rests on the time, talent and ingenuity of our board and committee members, with much of the work getting done in committee.
VOR has a number of standing committees and we’d like to make sure that VOR members have the opportunity to indicate your interest to serve on the committee(s) that reflects your interests and availability. We are also seeking candidates for VOR's Board of Directors for the term beginning July 1, 2015.
A volunteer form and descriptions of each VOR Standing Committee and form to indicate in your interest in serving on a VOR Committee and/or the VOR Board of Directors is available here.
Forms can be returned to by June 22, 2015
(Sybil Finken, VOR Immediate Past President)
835 S. Arlington Heights Rd #361
Elk Grove Village, IL 60007
Thank you for your consideration.
Ann Knighton, VOR President
Policy favoring deinstitutionalization has had a major adverse effect on many individuals, with a shift in funding priorities from Medicaid Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) and other specialized facilities, to smaller service options, such as Medicaid Home and Community-Based Services (HCBS) settings.
VOR has sought to tell the rest of the story.
Through a short survey, we asked to what extent families and legal guardians believe that their individuals are best served in their current setting, either in an ICF/IID or SNF (“ICF”) or a home and community-based setting (“Non-ICF”). The survey questions related to demographics, satisfaction, community integration, access to services, staff competency and vocational opportunities.
The responses to the ICF survey revealed a sharp contrast between common misperceptions of “institutions” as segregating and isolating environments and the perceptions of family members and guardians of individuals living in these settings. Based on their own experiences, ICF respondents indicated a high level of satisfaction with their individuals’ ICF homes, staff competency, access to services and community integration.
Especially revealing were the personal examples and responses provided by respondents, primarily families, in response to this question:
“What would you like our government to know about the current move to de-institutionalize ICF residents in favor of small community-based facilities?”
What mattered most to families of those receiving care in both ICF and Non-ICF settings was that their family members with I/DD received the care they needed and that their right to individual choice was respected. As so aptly stated by one respondent –
“Good public policies should be based on experience, common sense and humanity. There should be deference and respect for the positions of families who have first-hand experience in the care and treatment of persons with life-long disabilities” (ICF Survey respondent).
to inquire about receiving the Complete Survey with Results and Findings
Join VOR and receive a complimentary copy of the survey report
Read and Share VOR's Press Release: WORD and PDF versions
All Responses to, "What would you like our government to know about the current move to de-institutionalize ICF residents in favor of small community-based facilities?”
Submitted April 2, 2015 to the U.S. Appropriations Subcommittee on Labor, Health and Human Services, and Education and Related Agencies
VOR strongly believe such forced deinstitutionalization activities are contrary to federal law and cause human harm. These deinstitutionalization activities, including advocacy, lobbying, class action lawsuits, and other tactics by some HHS-funded agencies that result in the downsizing and closure of HHS-licensed ICF/IID homes, some specialized group homes, sheltered workshops and day programs. These HHS v. HHS deinstitutionalization activities are a cruel and absurd use of federal funding.
Tragedies are widespread and predictable when fragile citizens are removed from specialized care. The legally-protected rights of families and legal guardians to serve as primary decision-makers are routinely ignored. Bill language prohibiting the very actions that lead to human harm and are contrary to federal law is desperately needed.
Submitted March 24, 2015 to the U.S. Senate Approprations Subcommittee on Commerce, Justice, and Science and Related Agencies
(Similar testimony submitted to the U.S. House Appropriations Subcommittee on Commerce, Justice, Science and Related Agencies on April 13, 2015)
As explained below, VOR asserts that the DOJ Civil Rights Division’s legal proceedings and related actions to enforce the Americans with Disabilities Act (ADA) (“Olmstead enforcement”), directed at individuals with profound I/DD who reside in Medicaid-licensed facilities (e.g., ICFs/IID), have often caused human harm, including death, and financial and emotional hardship.
The concern is widespread: Since 2009, the Department of Justice (DOJ) has filed more than 45 “Olmstead enforcement” actions in 25 states. Yet, these actions often violate the letter and spirit of the Olmstead decision, especially with regard to the requirement of individual choice.
In response, Congress included this report language relating to DOJ actions in the Conference Report to accompany H.R. 83, Consolidated and Further Continuing Appropriations Act, 2015 (Division B, Commerce, Justice, Science and Related Agencies) (Pub.L. 113-235, December 16, 2014):
"Deinstitutionalization.-There is a nationwide trend towards deinstitutionalization of patients with intellectual or developmental disabilities in favor of community-based settings. The Department [of Justice] is strongly urged to continue to factor the needs and desires of patients, their families, caregivers, and other stakeholders, as well as the need to provide proper settings for care, into its enforcement of the Americans with Disabilities Act."
Read VOR's Senate Testimony
Read VOR's House Testimony