Issue: Past Administrations have often failed to include all credible national organizations, with varying viewpoints, in policymaking forums. A lack of diverse views does not lend itself to responsible policymaking.

Recommendation: Restore the balance of the policymaking process by seeking the viewpoints of all credible national disability organizations. All agencies working on long term care recommendations should seek input from VOR members and other national disability constituencies.

Issue: Protection and Advocacy (P&A) programs receive federal funding from the U.S. Department of Health and Human Services (DHHS). With federal funds, P&A programs have filed more than 62 class action lawsuits, often against state entities, on issues including deinstitutionalization, waiting lists, education rights, foster care concerns and enforcement of the Americans with Disabilities Act.

Eighteen (18) of these class action lawsuits have been against state-operated ICFs/MR settings with the express or implied purpose of closure. ICFs/MR are also funded and certified by DHHS. Thus, P&A class action lawsuits against ICFs/MR programs amount to HHS funding one of its programs to sue another, often in cases where DHHS has certified that the ICF/MR being sued meets DHHS imposed ICFs/MR quality care standards. This is ill-advised policy. Class action lawsuits against ICFs/MR settings -- under the guise of eradicating abuse and neglect and often carried out over the objections of the families and guardians of the residents -- have led to people with severe and profound mental retardation being isolated from the health and support services they require. As a result, the lawsuits have sometimes resulted in abuse and even death of the deinstitutionalized residents, as documented in major newspaper articles, most notably in California and Washington, D.C.

In response to ongoing concerns by family members of the individuals with mental retardation directly impacted, Reps. Thomas Bliley (R-VA) and James Greenwood (R-PA) submitted a request for a General Accounting Office investigation into P&A activities related to ICFs/MR closures and compromised quality of care in community-based services.

Recommendations: Release an Executive Order that, (1) permits class action litigation against ICFs/MR settings only in those cases in which a majority of the residents, or their families and guardians, approve of the lawsuit; and (2) requires P&A to monitor the health and safety of those residents impacted by its lawsuits, with an emphasis on those individuals transferred from the ICF/MR setting.

Issue: States' efforts to maintain large public- and privately-operated Intermediate Care Facilities for the Mentally Retarded (ICFs/MR; institutions) are being undermined by advocates who do not approve of such facilities. These advocacy groups have misstated the U.S. Supreme Court decision of Olmstead v. L.C., by alleging that the Americans with Disabilities Act requires dismantling of the institutional option. These advocacy organizations are receiving significant technical support from the federal Office of Civil Rights. VOR is most concerned by this apparent abuse of power. Elimination of specialized care for our society's most vulnerable citizens has often led to tragic consequences in terms of abuse, neglect and even death. Advocates, policymakers and legislators should be focusing all energies on the development of expanded community-based and ICF/MR options. We need both. Estimates indicate that over 200,000 individuals with mental retardation and other disabilities are awaiting services.

Recommendations: (1) Inform all Governors and State Medicaid Directors of the Administration's (and Olmstead's) support for a full range of care options, including ICF/MR settings. (2) Visit Northern Virginia Training Center in Fairfax, Virginia, which has implemented the "Centers of Excellence" program. The "Centers of Excellence" program makes available center expertise to individuals receiving community-based residential care. Access to medical, dental, therapies and other programs by these individuals heightens the quality of care received by this population and helps to ensure their placement in the community will be successful. VOR would be pleased to arrange such a visit.

Issue: VOR has long been concerned about the level of quality of care in many community-based settings serving people with mental retardation. VOR applauds recent efforts by the Health Care Financing Administration (HCFA) to consider quality of care in Home and Community-Based Services (HCBS) Waiver settings.

Recommendation: Strengthen and support HCFA's quality initiative related to the HCBS waiver setting.

Parents and family members must be included in all placement decisions affecting their family member with mental retardation. The careful decisions and opinions regarding the care received by their family member must be sought, respected and given due consideration.

There lacks appropriate quality assurance standards and monitoring systems for community residential supports and programs, despite the often forced transfer of individuals with mental retardation to these settings. Quality assurance standards and monitoring for community settings must be developed that focus on identified outcome measures, with appropriate input from parents. Outcome measures, regardless of the setting, must be developed using objective measures and, at minimum, take into account safety, met needs, quality of service, community involvement, opportunities for persons with mental retardation to develop as individuals, and total, accurate costs of the service delivery.

VOR supports continued research regarding managed care and persons with mental retardation, with appropriate parental/family input. VOR supports efforts to recognize large private or public Intermediate Care Facilities for the Mentally Retarded (ICFs/MRs) as a provider resource to serve the long-term medical, dental and care needs of individuals with mental retardation residing at the facility, as well as those in the surrounding community. Any managed care program must promote quality assurance and choice, and must include all key stakeholders, including family members.

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 is available. VOR strongly opposes the national trend toward total deinstitutionalization of ICFs/MR. VOR supports true person-centered planning that focuses on persons with mental retardation as individuals with varying and unique needs and abilities.