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.
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This year's Annual Meeting and Legislative Initiative are crucial to the future of Intermediate Care Facilities, Sheltered Workshops, Medicaid Services, and Guardianship.We need you to join our ongoing campaign to stop Federal Agencies, Protection & Advocacy, and DD Councils from taking away the options that make life better for so many individuals with I/DD.
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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
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.