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Executive Summary: 2007 DD Act Reauthorization - The Need for Immediate Reforms |
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January 2007
Executive Summary
The 2007 Reauthorization of the Developmental Disabilities Assistance and Bill of Rights Act: The Need for Immediate Reforms
In 2007, for the first time in seven years, Congress is required to consider the reauthorization of programs receiving federal funding under the Developmental Disabilities Assistance and Bill of Rights Act (DD Act).
While the DD Act’s policy endorses residential choice, some Protection and Advocacy agencies (P&A’s), through class action litigation, act to eliminate one of those choices – Medicaid-certified and funded Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR). These practices force the transfer of thousands of individuals from specialized ICFs/MR that are uniquely suited to meet their extreme needs. P&A lawsuits, for example, have been filed without regard to the choices of the people affected and their families/guardians. The resulting closures of some ICFs/MR have led to higher incidences of abuse, neglect and death of people with severe and profound mental retardation, who also have other debilitating physical, medical and/or behavioral disabilities. What’s more, when P&A (funded by the U.S. Department of Health and Human Services (HHS), as authorized by the DD Act) sues to close an ICF/MR (funded and certified by HHS), the lawsuit could be titled HHS v. HHS – an absurd use of federal dollars.
VOR urges Congress to adopt the following reform proposals aimed at assuring that DD Act program recipients carry out the Act’s mandate to respect choice in residential settings and family decisionmaking:
A. Freeze P&A funding to give Congress time to review the programs and consider reforms.
B. Freeze the use of funds for class action lawsuits involving the residents of ICFs/MR or, in the alternative, include language in the DD Act to further Congressional intent by:
i. Requiring that no P&A lawsuit may be filed against a Centers for Medicare and Medicaid Services (CMS)-certified facility that is in compliance with CMS regulations. If a facility is out of compliance, all CMS remedies must be exhausted before a P&A lawsuit can be filed; and
ii. Requiring that P&A’s consult with, and obtain agreement from all the residents of an ICF/MR it seeks to represent, or, where appropriate, their families or guardians, before filing any type of lawsuit on behalf of those residents.
C. An HHS audit of how DD Act programs are working and whether they are respecting family choice and the Olmstead decision, to be submitted to relevant House and Senate committees within one year.
D. A three year reauthorization so that the Congress can more closely monitor the effectiveness of DD Act policy and activity and how HHS is overseeing it.
VOR also calls on Congress to require that CMS conduct a study of whether states are offering people freedom of choice between an ICF/MR and Home and Community Based Services (HCBS) waiver settings, as required by Medicaid law and regulation (42 U.S.C. §1396n(c)(2)(C), 42 C.F.R. §441.302, and 42 C.F.R. §441.303(d)).
Thank you for your thoughtful and compassionate consideration of VOR’s DD Act reform proposals. About VOR: Voice of the Retarded is a national organization advocating for the right of individuals with MR/DD and their families to choose from among a full array of high quality residential and other support options. For more information, please contact Tamie Hopp, Executive Director and Director of Government Relations and Advocacy at 605-399-1624 (direct); 410-757-1VOR(1867) (VOR Washington, D.C. office); or Tamie327@hotmail.com.
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VOR * 836 S. Arlington Heights Rd., #351 * Elk Grove Village, Illinois * 60007 877-399-4VOR ph. * 847-258-5273 fax * tamie327@hotmail.com |
