Speaking out for People with
 Intellectual and Developmental Disabilities

VOR Initiatives

Comparative Mortality in Virginia Intermediate Care Facilities and Community Placements

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

VOR’s Mary Reese Testifies About Cruel and Wasteful HHS Funding for Deinstitutionalization

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 Submits U.S. Senate Testimony Opposing Federally-Funded Forced Deinstitutionalization By U.S. Department of Health and Human Services Agenices

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.

Read more

VOR Submits Senate and House Testimony Opposing Federally-Funded Forced Deinstitutionalization by U.S. Department of Justice

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

VOR Survey: Giving a Voice to Families and Guardians of Individuals with Intellectual and Developmental Disabilities in Various Residential Settings

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.

Ohio Disability Advocacy Alliance

Protecting the Rights of Ohio's Most Vulnerable Citizens

The Ohio Disability Advocacy Alliance (DAA) is comprised of volunteer advocates who came together in of support residential and employment choice, and opportunities for day services and programs, for citizens with disabilities. DAA was formed in opposition to state and federal initiatives which, if implemented, will severely limit service options in Ohio. 

Learn More

Ohio Citizens: Take Action
Testimony in response to the CMS Transition Plan by VOR and DAA members:

Strategic Leadership Planning Group Final (SLPG) Recommendations (December 2014)  ("The SPLG is developing a set of recommendations that will be presented to [DODD] Director [John] Martin, who will review the group's input to see what items can be implemented. It's important to remember that these are just recommendations, and may or may not be implemented; decisions about whether or not items can be implemented will be based on many factors." [Source: "Our Future: A Brighter Future for All Ohioans," Department of Developmental Disabilities (DODD)].

Disability Rights Ohio letters to the Kasich Administration: July 1, 2014 and March 26, 2015.

More information coming soon.