Throughout its history, VOR has been the only national organization to advocate for a full range of quality residential options and services, including own home, family home, community-based service options, and licensed facilities. We support the expansion of quality community-based service options; we oppose the elimination of specialized facility-based (institutional) option.

VOR represents primarily individuals with intellectual disabilities and their families/guardians. VOR advocates that the final determination of what is appropriate depends on the unique abilities and needs of the individual and desires of the family and guardians.

VOR supports both ICF/IID homes and quality community-based service options based on individual need.

VOR advocates for the right of individuals with intellectual and developmental disabilities and their families to choose from a full array of high quality residential and other support options including own home, community-based, and large settings, such as licensed Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID)

VOR supports safe and appropriate quality care in the community.

VOR opposes the use of federal funds for any activity that would deny individuals with Intellectual and developmental disabilities benefits or rights available to them under federal law.

VOR supports a full array of employment options, including sheltered workshops, supported employment, and competitive employment based on individual abilities.

VOR supports guardianship for individuals who cannot speak for themselves in some or all aspects of their lives, when in the best interests of the individual as determined by a court of law.

VOR supports a full array of education options for students with disabilities, from mainstreaming to special education settings, as required by federal law.

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Read VOR's letter to Daniel Levinson, Inspector General for the U.S. Department of Health and Human Services.

"I share my constituents' concerns that the CMS proposal relies on arbitrary criteria to determine whether a setting is 'community enough," Congressman Thompson writes. "Of particular concern is the proposed requirement that the Secretary of the Department of Health and Human Services 'apply a rebuttal presumption that a setting is not a home and community-based setting, and engage in heightened scrutiny' with regard to homes 'on the grounds of, or immediately adjacent to, a public institution,' or homes that are part of a 'housing complex designed expressly around an individual's diagnosis or disability’,” he writes.

The Congressman expresses concern that the proposed definition is so narrowly written that it is "antithetical to individual choice," threatens the viability of existing housing communities, and discourages future innovation and expansion of services.

Read Congressman Thompson’s letter.

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.

First prepared in 2005, our Toolkit has been refined and updated to further assist VOR advocates achieving our shared mission on behalf of people with I/DD by maximizing and harnessing our collective skills and strengths at the state and federal levels.

Even the most seasoned advocates will find something of value within the pages of the toolkit, and every member is invited to share the Toolkit with your members. Using this resource to reach deep into your own memberships to identify leaders and maximize participation is perhaps the greatest potential impact this toolkit can have.

Click here for the VOR Advocacy Manual and Toolkit!

Mary Reese, VOR Board Member, on behalf of VOR

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

Given its long history of providing comprehensive, highly specialized care to Connecticut citizens with profound disabilities, Southbury Training School (STS) ICF/ID is a crucial part of Connecticut’s system of care for the intellectually and developmentally disabled (I/DD) which should be preserved and expanded through open admissions.

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March 6, 2013

Dear Members of the 113th Congress,                                                                                                      

Across the country, families and guardians of individuals with profound intellectual and developmental disabilities (I/DD) welcome new and returning Members to the 113th Congress and thank you for your service to our nation. 

Reflecting the diversity of our members’ experiences, VOR is the only national advocacy organization that supports a full range of residential options, from own home, to small residential settings to federally-licensed facility-based homes. 

Like Congress and the Supreme Court, we oppose defining “choice” artificially to eliminate the facility-based option (“deinstitutionalization”).  Instead, VOR supports the expansion of critically needed, high quality community supports, while also maintaining the option of federally-licensed facilities, based on individual choice and the severity of disability.   

The enactment of the Americans with Disabilities Act (ADA) and the Supreme Court decision interpreting it (Olmstead) supports a full range of residential options. The ADA and Olmstead encourage community expansion while also respecting the right of residential choice. Consistent with these principles, Congress supports funding for Medicaid Home and Community Services option (“HCBS”) and congregate Medicaid facilities for people with I/DD (e.g., ICFs/ID).   Likewise, the Developmental Disabilities Act (DD Act) encourages individual choice among a full array of residential options and community expansion.

In stark contrast, some executive branch agencies are undermining federal law and individual choice. The U.S. Department of Justice’s Civil Rights Division (DOJ) and the U.S. Department of Health and Human Services’ Administration on Intellectual and Developmental Disabilities (AIDD), through its Protection & Advocacy (P&A) and DD Council programs (created by the DD Act and located in every state), proactively seek total closure of licensed facilities.  These closure activities are pursued regardless of the degree of disability and in complete disregard for individual and family / court appointed guardian choice. DOJ and AIDD programs’ lawsuits and activities to dismantle specialized facilities continue despite clear federal law and even though there is well-documented evidence of harm and even death to the displaced individuals.

It is time for Congress to investigate. It has been 13 years since the Developmental Disabilities Act has been reauthorized.  VOR asks you to please support hearings in the Senate Health Education Labor and Pensions (HELP) Committee and the House Energy & Commerce Health Subcommittee to explore the impact of federally-funded closure lawsuits activities on the residents of facility homes.  Please also support hearings in the House and Senate Judiciary Committees on the actions of DOJ to close facility homes.  Federally-funded actions to close specialized Medicaid facilities often fail to protect the rights of the residents with profound I/DD by not taking into consideration federally-protected rights of residential choice and family/guardian decision-making or the capacity of community services to safely serve displaced residents. Predictable tragedies result.  

Thank you for your consideration. If you have any questions, please contact Tamie Hopp, VOR’s Director of Government Relations, at 605-399-1624 or thopp@vor.net.    VOR and our members look forward to working with you.

Respectfully,

Ann S. Knighton

VOR President

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Read Complaint (Exhibit A - C are available upon request. Please contact Tamie at thopp@vor.net)

Plaintiffs' Reply in Support of Their Motion for Preliminary Injunction (Exhibits A - K are available upon request. Please contact Tamie at thopp@vor.net).

The federal government should not support the use of federal dollars by federal agencies to aggressively pursue the closure of licensed facility-based homes providing good care to people with I/DD, without any regard for the input or insights of the affected residents and their families; and without regard to well-documented tragedies.

Take action contact the Senate Budget Committee today.

While many charities understand that they can lobby, they hesitate to do so as they are afraid of breaking the rules. Watch this webinar or view the slides to learn how you can give your mission a voice in the policy debates while staying within the law. The webinar will help public charities understand:

* What counts as lobbying and what doesn’t
* The difference between the "501(h) election" and the "no substantial part” test
* How to calculate your organization’s lobbying limit
* Fundraising for lobbying, including rules for foundation funding

Watch the Salsa Lab sponsored Webinar

View the Salsa Lab sponsored slides

After an eight year journey, Virginia (“Ginger”) Massa now calls Holly Center home.

Families in similar situations across the country will appreciate what a monumental challenge it was for Ginger and her family to secure placement at Holly Center. As a Medicaid-licensed intermediate care facility for persons with intellectual disabilities (ICF/ID), becoming a permanent resident meant bucking a state and national trend.

Ginger’s good fortune is not lost on Mary Reese, Ginger’s stepmother and a VOR Board Member. As a national advocate, Reese knows all too well that Ginger’s struggle for the past eight years is one shared by thousands of individuals across the country.  She recognizes that her job as an advocate is not done.

“Our elation at Ginger’s placement at Holly Center is diminished by the knowledge that thousands of others are ‘stuck’ in community residential programs without consistent care and comprehensive services that are so necessary for their well-being.  I wish we could have done more to change this system which is so heartless and cruel in the name of individual rights and the subjective interpretation of least restrictive environment.”

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Read about Virginia and Mary's legal victory

Watch touching newscast on Mary and Ginger's journey on VOR's Youtube Channel

The Court agreed that Virginia was denied procedural due process because the Statute only provided for a hearing if the Secretary approved admission; it did not require a hearing when an application for ICF/MR admission was denied. Because ICF/MR admission is a state benefit, applicants who may be eligible have an interest that cannot be taken away without due process. To the extent that the Statute does not provide for a hearing when admissions are denied, the statute is unconstitutional.  
 

The case is Mary L. Reese, Guardian v. Department of Health and Mental Hygiene (Md. Ct. Spec. App. 2006).

Read related story here.