Home • Mission • About our Name • The Next Generation • EP Spotlight on VOR

Organizational Spotlight: Voice of the Retarded (VOR)

Speaking up for people with mental retardation with knowledge, compassion, and experience

Exceptional Parent Magazine

by David Chamalian

1999

Voice of the Retarded (VOR) was founded in 1983 when a small group of concerned parents joined together to successfully defeat legislation introduced in Congress that sought to close all private and public institutions for people with mental retardation. Since that initial success, the nonprofit VOR has remained dedicated to being a "voice" of empowerment for individuals with mental retardation and their families.

VOR's Mission: To unite people in advocacy, to educate, and to assist families, organizations, public officials, and individuals concerned with the quality of life and choice for people with mental retardation within residential options, including home, community residences, institutional, and congregate (or group) settings.

Via a nationwide network of volunteer state coordinators and attorneys and a 20- member board of directors, VOR provides individual, local support to members and non-members in their states. VOR also assists in national grass-roots advocacy campaigns. Its activities are funded primarily through tax-deductible membership contributions. "The activities of VOR...," report the Executive Director, Tamie Hopp, "ensure that individuals with mental retardation and developmental disabilities receive the level of services and supports for each individual to achieve his or her potential."

VOR critical issues and related positions

Parent and family participation in placement decisions: A cornerstone issue at VOR is the right to choose: Where one individual with mental retardation may thrive in one setting, another, with differing needs and abilities, may wither. Therefore, VOR maintains that it is imperative that individuals with mental retardation and/or their family be included in all placement decisions. VOR aids in ensuring that all feedback and opinions regarding the care received by the individual are sought, respected and given due consideration.

Quality assurance: Quality assurance standards and monitoring for community residential settings must be developed with a focus on goal achievement for each individual, with appropriate input from parents. Regardless of the setting, VOR sees to it that such standards take the following into account: Safety; quality and completeness of service; community involvement; opportunities for people with mental retardation to develop as individuals; and total, accurate costs of the service delivery.

Deinstitutionalization: A full continuum of residential options from home to community residences to institutional settings must be maintained to ensure that choice and access to appropriate care are available. VOR strongly opposes the national trend toward total deinstitutionalization of Intermediate Care Facilities for the Mentally Retarded (ICFs/MRs). (Also called institutions or developmental centers, ICFs/MRs are necessary for individuals with profound or severe mental retardation, who may be medically fragile as well.) VOR supports true person-centered planning that focuses on persons with mental retardation as individuals with varying and unique needs and abilities.

Managed care and long-term supports for persons with mental retardation: VOR supports continued research regarding managed care and persons with mental retardation. They stand behind efforts to recognize large, private or public ICFs/MRs to serve the long-term medical, dental and care needs of individuals with mental retardation residing in facilities, as well as those in the surrounding community.

Full inclusion and special education: A full range of educational options must be available to ensure that choice and access to appropriate supports are available.

Legislation and court cases

Testifying before and meeting with state and federal officials to educate the public about mental retardation issues, and to oppose initiatives aimed at closing institutions is a mainstay of VOR's work. Since 1971, there have been 48 class action lawsuits throughout the country, providing the climate for VOR to develop its influence and perfect the legal arguments to defend those who want a full range of residential choices. "Legislation, budget cuts, and litigation," argues Ms. Hopp, "threaten the quality community-based and institutional care required by people with special needs. As we move into the 21st Century, we need to continue our efforts by renewing our determination...it has never been more critical that we [VOR and other advocates] work together."

Some of VOR's most recent activities

In an intense grass-roots effort, VOR successfully organized opposition to and defeated H.R. 2020, a bill in the 105th Congress that purported to further choice in residential-care options, but which diverted funds from other, equally important Medicaid programs for people with mental retardation.

VOR secured passage and worked in support of S. 1649 and H.R. 3281, bills aimed at providing critical managed-care protections to Medicaid-eligible people with disabilities. Although the bills did not pass, new legislation, S. 88 and H.R. 797, has been introduced in the 106th Congress, and the Health Care Financing Administration released proposed rules and regulations that strongly support the aims of this managed-care legislation. VOR has submitted formal comments in response, strongly urging passage.

VOR has participated as Amicus Curiae - a person or group that offers advice on a legal matter - to the court in two recent cases. In Cramer v. Chiles, a federal case in Florida, VOR argued successfully that Medicaid law provides people with mental retardation and their families the right to choose where they want to live, regardless of setting. In Olmstead v. L.C. and E.W., a high-profile Supreme Court case out of Georgia, VOR, along with 142 other organizations, supported L.C. and E.W. - two people with mental retardation - in their claim that the definition of "most integrated setting" in the American with Disabilities Act does not mandate deinstitutionalization. On June 22, 1999, the Court decided in favor of L.C. and E.W. The court quoted VOR's brief that, "Each disabled person is entitled to treatment in the most integrated setting possible for that person recognizing that, on a case-by-case basis, that setting may be an institution." The decision is a victory for VOR and other organizations that support choice in residential settings, and discourages advocates in support of total deinstitutionalization.

Because VOR is dedicated to empowering families, they worked intensively to include the following language, recognizing families' role in care decisions, in the Developmental Disabilities Assistance and Bill of Rights Act, 1994 Amendment: "Individuals with developmental disabilities and their families are the primary decision makers regarding the services and supports such individuals and their families receive."

Since its humble, yet triumphant, inception, VOR has grown into an influential, 50-state network of not just parents and other family members, but professionals in the field, parallel organizations, and guardians and friends of people with mental retardation as well. VOR's commitment remains steadfast: To be the strong, adamant "voice" as expressed in its name.

Resources

VOR, Attn: Tamie Hopp, Executive Director, E-mail tamie327@hotmail.com.

Before and After Zachariah, by Fern Kupfer, Academy Chicago Publishers, (312) 751- 7300. This personal account of a family's struggle to raise their son who has severe mental retardation describes their decision to choose institutional care as the best alternative. Available through the EP Library, (800)-535-1910, for $14. Please use reference number AP 111GN.

VOR * 836 S. Arlington Heights Rd., #351 * Elk Grove Village, Illinois * 60007

877-399-4VOR ph. * 847-258-5273 fax * tamie327@hotmail.com