Developmental Disabilities Assistance and Bill of Rights Act Reauthorization

Reform and Reauthorization of the Developmental Disabilities Act Urgently Needed

It has been 13 years since Congress reauthorized the Developmental Disabilities Assistance Act (DD Act). Authorizations for DD Act appropriations expired in 2007, although Congress has continued to fund these programs. DD Act programs, including Protection & Advocacy (P&A), DD Councils, and University Programs, operate in every state. The DD Act programs’ administering agency is the Administration on Intellectual and Developmental Disabilities (AIDD).

Oversight of federal AIDD and DD Act programs is inadequate. Through lobbying, class action lawsuits and other tactics, some DD Act programs are using their public funds to achieve dangerous deinstitutionalization policies, evicting vulnerable people with intellectual disabilities from public and private Medicaid-certified homes, disregarding individual choice and the legal right to appropriate services, as required by the DD Act, the Americans with Disabilities Act (as interpreted by the Supreme Court’s Olmstead decision) and Medicaid law.

We urge Congress to reform the DD Act by taking the following actions: 

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Additional DD Act Reauthorization Resource

New! VOR Federal Comments Urging Independent Oversight and Unbiased Audit for P&As; More Inclusive Public Input Process Necessary to Ensure Deinstitutionalization Goal Supported by Individuals Directly Impacted by Goal (September 17, 2012)

VOR Federal Comments Urging Objective Performance Measures for State DD Councils (May 28, 2012) 

VOR Federal Comments Urging Objective Performance Measures for State Protection & Advocacy Systems (June 28, 2012)

VOR Federal Comments Urging Objective Performance - Not More Self-Reporting - of DD Act Programs

VOR Comments and Objections to "Realizing the Intent of the DD Act: How the DD Network Advances The Independence, Productivity, and Integration of People with Intellectual and Developmental Disabilities" and VOR's Call for a Halt to DD Act Deinstitutionalization Activities Consistent with Clear Congressional Intent

VOR Responds to the National Council on Disability's "Rising Expectations: The Developmental Disabilities Act Revisted" report, released in February 2011.

Supporting Common Sense and the Law: Individuals and Families as 'Primary Decisionmakers'" (June 2011)

"Residential Choice: It's the Law" (June 2011)

VOR Executive Summary - The Need for Immediate Reforms

• Reform and Reauthorization of the Developmental Disabilities Act Urgently Needed

VOR Full Presentation - The Need for Immediate Reforms

• The Reauthorization of the Developmental Disabilities Assistance and Bill of Rights Act
• Why Congress Should Care About the ICF/MR Program and the People It Serves: The Human Consequences of the DD Act Programs’ Ideologically-Based Attacks on ICF/MRs

• State Specific Summaries of DD Act Abuses (California, Georgia, Kentucky, Maryland, Massachusetts, Michigan, and Washington State).

VOR DD Act Task Force Report
Federal Oversight of Entities Funded Under the DD Act: Abuse of DD Act Programs' Powers and Resources

• Executive Summary
• Full Report: Abuse of DD Act

Family/Guardian Testimonials: P&A's failure to include families and respect residential choice

Summary of Testimonials

• Arkansas: Attorney/Parent testimonial (statewide family association) (2006)
• California: Coffelt Case Study (2006 Update)
• California: Coffelt Case Study (2000)
• California: Parent testimonial (2007)
• California: CASHPCR (statewide family association) testimony (2006)
• Florida: Parent NON-involvement in Brown v. Bush
• Illinois: Illinois League of Advocates for the Developmentally Disabled (statewide family association) testimonial (2006)
• Kentucky: Parent Leader Testimonial (2007)
• Maryland: Parent testimony (2006)
• Ohio: OLMR (statewide family association) testimony (2006)
• Pennsylvania: Pennsylvania League of Concerned Families of Retarded Citizens (statewide family association) testimonial (2006)
• Utah mother, her son's severe burns at a group home, and the Utah P&A's lack of response

Legal Resources

• Developmental Disabilities Assistance and Bill of Rights Act of 2000
• Section 143 of the DD Act - System Required
• Deinstitutionalization is Not Mandated by the DD Act
• Protection and Advocacy Agencies Involvement in Deinstitutionalization Lawsuits, GAO-03-1044
• Compliance with State Plan and Payment Provisions, 42 U.S.C. §1396n
• Code of Federal Regulations, Part 441: Services - Requirements and Limits Applicable to Services; Subpart G, Home and Community Based Services - Waiver Requirements

DD Act Legislative History

• 1993 House Energy and Commerce Committee Report (available upon request by email)
• Protection and Advocacy Federal Funding
• Congressional Record, 1993

Protection and Advocacy Class Action MR/DD Lawsuits

• Class Action Litigation: ICF/MR (MR/DD) Deinstitutionalization Cases Filed By Protection and Advocacy

 Olmstead Resources

• The Olmstead Decision
• Olmstead v. L.C. - Resources
  (VOR Olmstead Brief; Olmstead and Choice; What Olmstead is Not; Olmstead and Guardianship)

 Medicaid ICF/MR and Home and Community Based Services Waiver Resources

• ICF/MR Program - Background and History
• ICF/MR Background and Milestones - Centers for Medicare and Medicaid Services
• Home and Community Based Services Waivers: An overview
  (including a comparison of federal oversight requirements of ICFs/MR and HCBS Waivers)
• An Invitation to Visit an ICF/MR
• Tour Northern Virginia Training Center - it's very close to Washington, D.C.
• Medicaid and Our Family Members With Severe and Profound Mental Retardation

Characteristics of Residents of Large Facilities (Chart)

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  http://rtc3.umn.edu/risp/docs/risp2010.pdf (pages 30-41)

•  Our Family Members: People with Severe and Profound Mental Retardation (VOR Position)

Systemic Abuse and Neglect of Persons with Developmental Disabilities in Community Settings

• Media coverage highlighting the increasing need for more effective federal and state protections in the ever-expanding community system of care for people with mental retardation
• Federal Oversight of Growing Medicaid HCBS Waivers Should be Strengthened, GAO-03-576 (June 2003)
• Bibliography of 72 peer reviewed studies about the abuse of children with developmental disabilities (2001)
• Letter from Senators Grassley and Breaux, re: poor HCBS quality
• HCBS Quality Framework and Communications, Centers for Medicare & Medicaid Services
• Peer-Reviewed Research Finding Higher Risk of Mortality in Community Settings (Shavell, Strauss and Day)

Lack of Health Care Access for People with Mental Retardation

• Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation
• Special Olympics International: Health Research .