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

April 2015

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).

Please contact This e-mail address is being protected from spambots. You need JavaScript enabled to view it 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?”

 

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

 

Seeking Board of Director Applicants

January 2015


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 This e-mail address is being protected from spambots. You need JavaScript enabled to view it or 712-527-3250; or Julie Huso, Executive Director at This e-mail address is being protected from spambots. You need JavaScript enabled to view it or at 605-370-4652, with any questions and to receive a VOR Board application form.

 

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.


 

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)

 
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