Speaking out for People with
 Intellectual and Developmental Disabilities

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.

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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

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. 

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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.

VOR, COFAR and CCMR Team Up to Secure Changes to New Laws

October 22, 2014

In a letter sent today, three nonprofit advocacy organizations joined together asking the State Legislature to make important changes to legislation passed recently.

VOR, COFAR, and CCMR  (Malden, MA) all support access to high quality care across a continuum of care options for people with intellectual and developmental disabilities (I/DD). In a letter to the legislature, they sought changes to the National Background Check Law, the Eligibility and Autism Commission Law, and the Real Lives Law, all passed recently. 

“While all three laws,” the organizations wrote, “advance certain rights for people with I/DD, they also all contain shortcomings that will, upon implementation, harm the very people these new laws aim to assist.”

The letter enclosed three position papers, each calling on the legislature to “fix these shortcomings so that individuals with I/DD can realize the full and favorable impact of each new law.”

Position Papers:

•    "Long-Awaited Background Check Law Requires More Waiting. Advocates Call on Legislature to Hasten Implementation" (October 2014)

•    "New Eligibility and Autism Commission Law is Limiting; Advocates Call on Legislature to Change the New Law" (October 2014)

•    “‘Real Lives’ Bill misses its own mark by putting financial planning and control in the hands of strangers. Advocates call on Legislature to make necessary changes to protect individuals” (October 2014)

Facility Closures: A brief history and its impact on people with intellectual and developmental disabilities

Distributed by: The Greater Salisbury Committee, Inc.
October 10, 2014

Related news: State health officials: 'No plan to close Holly Center' (citing James Anzalone's, Former Rosewood Director, Letter)

Click here for PDF

The Greater Salisbury Committee expresses appreciation to VOR, a national advocacy organization, for its help with this document.
Some history: From whence we came

In 1965, then-Senator Robert Kennedy toured the infamous New York Willowbrook institution and observed, grimly, that residents were “living in filth and dirt. He labeled the facility a “snake pit.”

The atrocities of Willowbrook ushered in massive reform, beginning in 1971 with the development of Medicaid Intermediate Care Facilities for Individuals with Mental Retardation (ICFs/MR). The medical term “Mental Retardation” is no longer used because it is considered politically incorrect; however it does define an incurable cognitive impairment, unlike various other forms of mental illness that are treatable. “Intellectual Disability” is now used and Holly Center is referred to as an ICF/IID – an Intermediate Care Facility for Individuals with Intellectual Disabilities.

As the ICF/IID program grew, so did calls for housing alternatives. In 1981, Congress responded by providing Medicaid funding options for home and community bases services (group homes).

It was not long before efforts to “rebalance” our system of care shifted from expanding options to the dramatic reduction of ICFs/IID, over the strong objections of individual residents and their families and legal guardians, and in spite of well-publicized human tragedies. The pendulum has now swung to the opposite extreme and the option of ICF/IID care is nearly gone.

What about Olmstead?