Speaking out for People with
 Intellectual and Developmental Disabilities

Olmstead Decision -- VOR Press Release

VOR Applauds
U.S. Supreme Court Ruling in Favor of Choice
Wednesday, June 23, 1999

Quoting VOR's Amicus Curiae brief, the Supreme Court yesterday in Olmstead v. L.C. and E.W. held 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."

In the 6-3 ruling, the Justices ruled that unjustified institutionalization is discrimination, bust also emphasized that "nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings." The decision is a victory for VOR and other organizations that support choice in residential settings, and discourages advocates in support of total deinstitutionalization.

Our Family Members: People with Severe and Profound Intellectual Disabilities (VOR Position)


Our Family Members –
People with Severe and Profound Intellectual Disabilities:
These are the people Congress had in mind when Medicaid was established.

These are the people that have the most to lose if Medicaid is cut.

 People with severe and profound intellectual disabilities (formerly, "mental retardation") need an effective and credible voice now more than ever.

 They need VOR’s voice and Congress’ support.

Despite tremendous progress relating to acceptance and awareness of people with disabilities, people with the most severe and profound intellectual disabilities are often forgotten because they are unseen.

An Invitation to Visit an ICF/MR

You are encouraged to visit and tour a licensed Intermediate Care Facility for Persons with Intellectual Disabilities (ICFs/ID) in your area. VOR is happy to put you in touch with a member who can help arrange the visit.

Around the country, there are excellent ICFs/ID providing residential care and other supports to residents with severe and profound intellectual disabilities. Some of these facilities also provide a myriad of health care and other services to individuals living in the surrounding communities. VOR would be happy to help arrange for a tour. Please contact Tamie Hopp at 605-399-1624; This email address is being protected from spambots. You need JavaScript enabled to view it..

ICF/IID Program - Background and History

Intermediate Care Facilities For the Developmentally Disabled:
Meeting the Long Term Care Needs and Maximizing the Potential
of Individuals with Intellectual and/or
Developmental Disabilities

by American Health Care Assocation


Prior to 1971, facilities for the people with intellectual disabilities (formerly, "mental retardation") developmental disabilities were financed solely by state, local and private funding. Many facilities were plagued by overcrowding and poor conditions. Dramatic changes were the order of the day, compelling Congress and the Nixon administration to act.

Home and Community Based Services Waivers: An overview

Home and Community Based Services Waivers: An overview

 The Home and Community-Based Services (HCBS) waiver program was established in 1981 as part of Medicaid in the Social Security Act (1915(c)). Under the HCBS waiver program, states can elect to furnish a broad array of services (excluding room and board) that may or may not be otherwise be covered by Medicaid, including case management, homemaker, home health aide, personal care, adult day health care, habilitation, and respite services.  States can request permission to offer additional services. The Centers for Medicare & Medicaid Services (CMS) must grant approval of all waiver applications.   The intent of the waiver is to give states the flexibility to develop and implement alternatives to institutional care for eligible populations. Eligible populations include Medicaid-eligible elderly and disabled persons, physically disabled, persons with developmental disabilities or mental retardation, or mental illness. Individuals must be shown to be eligible for institutional services (such as an Intermediate Care Facility for Persons with Mental Retardation (ICFs/MR) to be eligible for HCBS.  (Source: Duckett, M.J. & Guy, M.R., HCBS Waiver, Health Care Financing Review (Fall 2000). Vol. 22, Number 1, pp 123-125).

To view a chart which compares quality assurance criteria for ICFs/MR v. HCBS, click here. Among other quality assurance advantages, ICFs/MR must meet 8 conditions of participation (CoPs), which are comprised of 378 specific standards and elements. CoPs cover Management; Client Protections; Facility Staffing; Active Treatment; Client Behavior and Facility Practices; Health Care Services: Physical Environment; and Dietetic Services. In contrast, there is no standard HCBS program, although all are required to provide CMS with certain assurances as a condition of waiver approval, including health and welfare; individualized plans of care; and provider qualifications. ICFs/MR are subject to annual onsite evaluations ("surveys"); HCBS waivers are reviewed every 3-5 years.

Note of caution: The “flexibility” catch-22

The cornerstone of the HCBS waiver – state flexibility – is also its catch 22 for participants. Every 3-5 years a state has the option to renew, not renew, or change the terms of its waiver program. HCBS services must be delivered pursuant to the development of a plan of care and based upon assessed individual needs. However, because the HCBS program is an optional benefit and states have the flexibility to determine the service package, number of persons to be served, target group, etc., a participant may find themselves cut from the program or with a different mix of services than in prior years. In Mississippi, for example, an approved waiver resulted in 48,000 people being cut from the waiver program. In nearly every state, Governors are considering changes to the Medicaid program.

There is no question that the HCBS waiver program has allowed thousands of individuals to be adequately served in community-based settings. The residents remaining in our nation’s ICFs/MR, however, are the most fragile and most in need of consistent, high quality, services. When considering the waiver option, individuals, families and guardians are cautioned to weigh the benefits with the costs.