Speaking out for People with
 Intellectual and Developmental Disabilities

VOR joins in call to U.S. Health and Human Services Secretary, Kathleen Sebelius, to support individual choice and an inclusive definition of “community”

September 27, 2013

Sixteen state and national organizations, including VOR, sent a letter to Kathleen Sebelius, Secretary of the U.S. Department of health and Human Services’ (HHS), and Marilyn Tavenner, Acting Administrator for the Centers for Medicare & Medicaid Services (CMS), and a separate letter to James K. Haveman, Director of the Michigan Department of Community Health.

Coordinated by the Madison House Autism Foundation, the signing groups called on Secretary Sebelius and Administrator Tavenner, and Director Haveman, to embrace principles in support of individual choice, as required by Olmstead, and to reject a definition of “community” which would prevent innovative housing options.  The letter was in response to the Arc of Michigan, which asked these officials to halt funding for “congregate” options.

HHS/CMS is currently reviewing a proposed rule that, if finalized, would so narrowly define community that many current and future housing options for people with I/DD and autism would be denied Medicaid funding under its home and community based services programs.  Groups joining the letter to Secretary Sebelius and Administrator Tavenner have been outspoken opponents of the proposed rule.

Read the groups’ letter to Sebelius and Tavenner

Read Tavenner's Response (November 12, 2013)

Read the groups’ letter to Haveman

Read related blog by Jill Barker, VOR’s First Vice President and Board Member (Michigan)

Read Nevada Congressional Delegation's Letter Objecting to Rule

Read Congressman Mike Thompson's (CA) Letter Objecting to Rule

Read Letter from Congressman Bill Huizenga (MI)

Read Letter from Senator Mike Johanns (NE)

Read Letter from Congressman David Loebsack (IA)

Read Letter from Congressman Jeff Fortenberry (NE)

VOR calls on Long Term Care Commission to support fiscal reason, choice, and staffing standards

Update, October 17, 2013

VOR's Response to Commission's Recommendations

On July 31 and August 16, VOR submitted comments to the Commission on Long Term Care. The Commission was established under Section 643 of American Taxpayer Relief Act of 2012 (P.L. 112-240) (January 2, 2013) (About the Commission)

In its first submission (July 31, 2013), VOR cautioned the Committee against a “less for more” approach to financing Medicaid long-term care services for people with intellectual and developmental disabilities (I/DD). With 80% of long-term care resources being spent in community-based settings on 80% of the I/DD population in a vast majority of the states, there is not, we submit, any “institutional bias.”

In its second submission (August 16, 2013), VOR urged the Commission to support uniform staffing standards, including national background checks and minimum staff licensing, certification and training requirements, to ensure the consistent delivery of quality of care in community-based settings serving people with intellectual and developmental disabilities (I/DD).  The Commission’s authorizing statute charges the Commission, in part, to consider workforce development strategies.

VOR's Laurie Stengler Testifies for Choice

Laurie Stengler, VOR member from Illinois, represented VOR during Illinois House and Senate Appropriations Committee hearings during the week of April 9, 2013. Her testimony targeted (and opposed) proposed funding cuts to public developmental centers (ICFs/MR) and specifically called for continued funding for Murray Developmental Center which the Governor has said he will close.

Laurie's brother-in-law is a resident of Murray and she is a plaintiff in a lawsuit filed by families of affected residents at developmental centers across the state, and the Illinois League of Advocates for the Developmentally Disabled, a VOR affiliate and the statewide organization for developmental center residents and their families.

Read Laurie's testimony.

VOR Testifies About Cruel and Wasteful HHS Funding for Deinstitutionalization

March 13, 2013

MaryTestifyingMarch2013_editMary Reese, VOR Board Member, on behalf of VOR
Before the Subcommittee on Labor, Health and Human Services, Education and Related Agencies
House Appropriations Committee

VOR is a national organization advocating for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD). VOR is not requesting appropriations. Instead, VOR requests the Subcommittee’s support for language to prohibit the use of HHS appropriations in support of deinstitutionalization activities which evict eligible individuals with I/DD from HHS-licensed Medicaid facilities, in violation of federal law. Deinstitutionalization activities, including advocacy, lobbying, class action lawsuits, and other tactics, by some HHS-funded agencies (discussed below) resulting in the downsizing and closure of HHS-licensed are a cruel and absurd use of federal funding.  These closures often lead to human tragedy. Medicaid-licensed facility homes, including Intermediate Care Facilities for People with Intellectual Disabilities (ICFs/ID), are uniquely suited to meet the residents’ profound support, health care and behavioral needs. 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.

Read Written Testimony (For the Record)

Read Mary Reese's Statement/Testimony to the Committee

Read Letter of Support from the California Association of Psychiatric Technicians

Watch touching newscast featuring Mary Reese and her step-daughter, Ginger, and their long journey to securing appropriate services


VOR Calls National Council on Disability's Toolkit Reckless

VOR, a national organization advocating for high quality care and human rights, strongly objects, in substance and in principle, to the National Council on Disability’s (NCD) newly released “Deinstitutionalization: Unfinished Business policy document (110 pages) and accompanying “toolkit” (how-to manual) (201 pages).

VOR represents thousands of individuals, families and legal guardians, organizations and advocates around the country who value individual choice and recognize that true person-centered planning begins with the individual and his/her needs. One size does not fit all. An array of quality service and support options is needed to ensure that choice, based on individual need, is accommodated.

NCD used more than 300 pages to advocate for closing specialized homes – Medicaid-licensed Intermediate Care Facilities (ICFs/MR) – serving our nation’s most profoundly disabled citizens. This insensitive, reckless attitude will cause these vulnerable individuals to suffer grievous harm and even death.

Read more

Read VOR's Letter to President Obama

Read VOR's Letter to Key Members of Congress