Additional DD Act Reauthorization Resources Executive Summary: Abuse of DD Act Programs' Powers & Resources
Executive Summary: Abuse of DD Act Programs' Powers & Resources |
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FEDERAL OVERSIGHT OF ENTITIES FUNDED UNDER THE DEVELOPMENTAL DISABILITIES ASSISTANCE & BILL OF RIGHTS (“DD ACT”) “ABUSE OF DD ACT PROGRAMS’ POWERS & RESOURCES” EXECUTIVE SUMMARY VOR’s DD Act Reauthorization Position. VOR is a national grassroots advocacy organization speaking out for persons with MR/DD. There are 3 primary DD Act Programs. The DD Act will be reauthorized in 2009, the first time in more than 8 years. The DD Act requires the provision of services to be based on choice and need. Choice: The DD Act recognizes individuals and their families as the “primary decisionmakers” regarding services supports and policies (DD Act, 42 U.S.C. 15001(c)(3)(2000)). Need: The DD Act recognizes the right of individuals with developmental disabilities to receive publicly-supported treatment, services and habilitation that are appropriate to needs of the individuals (42 U.S.C. §15009(a)(3)(A)(2000)). Congress intends for the DD Act to support service choice. Some DD Act programs have abused their powers and federal resources by pursuing activities that are counter to the DD Act’s statutory policy and congressional intent. Here’s just a sampling: State DD Councils The Wisconsin DD Council adopted a public position in 2007 supporting the downsizing and eventual closure of Southern Wisconsin Center, a state operated facility, and granted “People First Wisconsin” at least $61,000 over 4 years, despite this organization’s express priority to “not rest until all state centers in WI are closed.” DD Act programs in Maryland, Washington, and other states also funded self-advocacy groups and activities, which supported ICF/MR closures. “It is the position of the [Washington State] Developmental Disabilities Council that: 1) the Legislature should pursue a policy on downsizing IMR/RHCs [MR/DD facilities] with the goal of eventually closing institutions contingent upon development of adequate and appropriate programs and facilities.” (Residential Habilitation Centers (RHCs), Policy No. 103). State Protection & Advocacy agencies The Ohio P&A proposed, as part of a legal settlement with the state, to eliminate entirely facility-based care in the state. The Florida P&A told one mother of a facility resident in a letter that large facilities are a “despicable way for government and society to treat people who happen to have a developmental disability.” In response to consumer complaints regarding requests to access individual records, a Hawaii state bill was introduced in 2008 that, if passed, will require the state auditor to perform a financial and management audit of the Hawaii Disability Rights Center, the state’s P&A. One Member of Congress has sought to address the concerns of facility residents and their legal guardians by filing a bill that, if passed, will require P&As to notify individuals and their legal guardians before a class action suit is filed and provide them with the right to opt out of the suit (see, H.R. 3995). State University Programs (UCEDDs) For more detailed information about DD Act program abuses see, http://vor.net/DDActReport.htm. Many fragile Americans with severe and profound MR/DD have been harmed due to DD Act program activities. “Community for all” is a position forcefully pursued by many disability advocates, including many DD Act programs. Far from utopia, systemic problems with community services are well-documented in more than half the states (see generally, http://www.vor.net/abuse-and-neglect). In some situations, DD Act programs have denied or ignored these problems and continued to pursue the transition of medically fragile, multiply disabled, profoundly MR/DD individuals to ill-prepared, under-funded community living situations. For example, in California, much higher mortality has been reported in peer-reviewed studies among the more than 2,500 who left facility care following a P&A lawsuit. In New Mexico, the Governor authorized a private investigator to find former Los Lunas facility residents – a facility closed due to a P&A lawsuit – who had “slipped through the cracks.” In Maryland, where the DD Council and P&A express strong anti-facility biases in testimony, priorities, and policy, there have been extensive media reports regarding the state’s group home failings. In Pennsylvania, families of former Western Center residents, closed due to a P&A lawsuit, have filed a lawsuit alleging injuries among the residents transferred. In Illinois, Maryland, Ohio, Utah, California and other states, families and other advocates have delivered public testimony/comments regarding DD Act program activities, including these programs’ anti-facility choice bias and disregard for individual and family/guardian input. VOR’s Recommended Reforms A. Schedule public hearings on the DD Act as soon as possible, providing opportunity for affected individuals and their families to testify. B. Amend the DD Act to enforce DD Act program adherence to residential choice, as is clearly supported by Congressional intent and the U.S. Supreme Court’s Olmstead decision: D. Limit the reauthorization cycle to three years. For More Information Contact: |
