Speaking out for People with
 Intellectual and Developmental Disabilities

The DD Act: The Need for Immediate Reform

For the first time in nearly a decade, Congress will be considering 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 and individual decisionmaking, some DD Act programs, through legislative lobbying, class action lawsuits and other tactics, 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. Protection & Advocacy (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 developmental disabilities, 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. Level fund DD Act program funding to give Congress time to review the programs and consider reforms.

B. Pass H.R. 1255 to require that federally-funded organizations, including P&A, notify residents of Medicaid-funded and certified ICFs/MR before a class action is filed, and provide a time limited opportunity for residents, or where one has been appointed, their legal guardians, to opt out of the lawsuit.

C. Secure an HHS audit of how all DD Act programs are working and whether they are respecting family choice and the Olmstead Supreme Court decision, to be submitted to relevant House and Senate committees within one year.

D. Limit the reauthorization to three years so that the Congress can more closely monitor the effectiveness of DD Act policy and DD Act program 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)).