Submitted March 24, 2015 to the U.S. Senate Approprations Subcommittee on Commerce, Justice, and Science and Related Agencies
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."
Policy favoring deinstitutionalization has had a major adverse effect on many individuals, with a shift in funding priorities from Medicaid Intermediate Care Faciliities 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-blased setting (“Non-ICF”). The survey questions related to demographics, satisfaction, community integration, accessto 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.
Non-ICF respondents expressed general satisfaction in measures relating to integration, access to services, staff competency, and vocational opportunities but were evenly divided over whether their individuals would do poorly or well in an ICF as an alternative setting. ICF respondents by a strong majority believed that their individual would do poorly in a non-ICF community setting.
Most respondents for both surveys were informed about alternatives to their individuals’ current placements based on their own evaluations of different settings and, in some cases, the individuals’ prior placements in other settings.
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).
Executive Summary (coming soon)
Complete Survey with Results and Findings (coming soon)
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?”
VOR’s Nominating Committee seeks individuals interested in serving on the VOR Board of Directors for 3 year terms beginning July 1, 2015.
Please respond by January 23, 2015.
The Committee is seeking applicants who:
• Have a passion for our cause on behalf of individuals with intellectual disabilities.
• Can commit time for board meetings, committee planning and meetings, assist in reaching out to current and prospective members, and attend the Annual Conference.
• Are team players who work well with others in a group.
• Listen well and are thoughtful in considering issues.
• Are willing and able to assist in development efforts.
If you are interested in learning more, please contact Sybil Finken, Chair of the VOR Nominating Committee, at
or 712-527-3250; or Julie Huso, Executive Director at
or at 605-370-4652, with any questions and to receive a VOR Board application form.
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.
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)].
More information coming soon.
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.”
• "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)
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?