SECTION 3. Conclusion: Transformation in the Midst of Fiscal Crisis

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Given the current economic crisis, a transformation is required across systems of policy, practice, and funding toward a more progressive approach to serving people with the greatest need; this approach must focus on promoting optimal self-sufficiency and independence. The public systems on which the majority of the ID/DD population relies throughout their lifespan have not been significantly modernized since their inception more than 45 years ago. Thus, public policy remains entrenched in the 1960s-era all-or-nothing approach to serving people with disabilities, in which a person must demonstrate inability to be productive to be deemed eligible for critically important supports. Federal policy and programs have not kept pace with evidence-based best practices or with the evolving desires of self-advocates and families. Existing systemic impediments must be addressed holistically and comprehensively to allow citizens with ID/DD to work, save, and financially contribute as taxpayers to society, and to ensure that they also continue to receive the support necessary to thrive, enjoy optimal health, and become as independent as possible.

The current structure of publicly funded supports for citizens with ID/DD will continue to face scrutiny in the years to come; this structure should be carefully modernized in a way that helps people reach their optimal levels of self-sufficiency while acknowledging that many of them will require some level of supports throughout their lifespan.

We must identify and eliminate the systemic impediments in our current public infrastructure that discourage and even prevent citizens with ID/DD from enjoying the same opportunities as those without disabilities to go to school, work, earn a livable wage, live independently, and engage meaningfully in their communities. Promoting citizenship and self-sufficiency is at the core of our nation's social fabric, and federal policies or systems that perpetuate the discrimination, segregation, or diminution of citizens with ID/DD are financially unsustainable and morally contradictory to the rights outlined in the DD Act and the ADA. Various pockets of the country have made progress in moving beyond the old models of segregation and cyclical dependency toward optimal self-sufficiency and advancement of citizens with ID/DD. This progress must be brought to a national scale.

The aims of the DD Act can be fully realized only if the Federal Government makes a firm commitment to realigning public policy, funding streams, and goals across federal systems to focus on achieving the highest expectations of and for citizens with ID/DD.


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[1] National Council on Disability, Rising Expectations: The DD Act Revisited, 2011 (

[2] Developmental Disabilities Assistance and Bill of Rights Act of 1963 (reauthorized as P.L. 106-402).

[3] Most community-based participatory research (CBPR) projects involve local communities defined by race, ethnicity, geography, or occupation. Autistic self-advocates, a geographically dispersed community defined by disability, face issues in research similar to those experienced by more traditional minorities. Nicolaidis et al. sought to build an academic-community partnership that uses CBPR to improve the lives of people on the autistic spectrum. Through the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), the research team conducted several studies on the health care experiences and well-being of autistic adults. They identified a number of strategies that integrate technology and process to successfully equalize power and accommodate diverse communication and collaboration needs. Nicolaidis et al. concluded that CBPR can be conducted successfully with autistic self-advocates.

[4] National Early Childhood Technical Assistance Center, "Annual Appropriations and Number of Children Served Under Part C of IDEA," 2011 ( partcdata.asp); M. Greer, A. Taylor, and S. D. Mackey Andrews, FPG Child Development Institute, National Early Childhood Technical Assistance Center(NECTAC), University of North Carolina, A Framework for Developing and Sustaining a Part C Finance System, NECTAC Note No.23, 2007. This paper is based on a presentation of the same name given at the November 2003 Office of Special Education Programs National Early Childhood Conference in Washington, DC (

[5] Ibid. NECTAC, funded through the Department of Education's Office of Special Education Programs (OSEP), has prepared a chart that outlines federal appropriations compared with number of children served from FY1987 through FY2011 ( The chart shows that while the number of children deemed eligible for Part C early intervention services grew from 274,747 in FY2004 to 342,821 in FY2011, the annual federal appropriations for Part C services declined from $444.4 million in FY2005 to $438.5 million in FY2011.

[6] Data obtained from the Centers for Disease Control, 2011 (

[7] The information was summarized in an executive summary developed by the National Association of State Directors of Special Education, the entity responsible for organizing the OSEP meeting on the State Performance Plan/Annual Performance Report process within IDEA accountability system during the summer of 2011 (Alexandria, VA, May 11–13, 2011).

[8] Data confirmed through Eric Buehlmann, Deputy Executive Director for Public Policy, National Disability Rights Network (correspondence dated September 8, 2011).

[9] Reprinted from Think College: A Snapshot of Postsecondary Education for Students with Intellectual Disabilities across the United States. Think College Fast Facts, Issue No. 2. Boston, MA: Institute for Community Inclusion, University of Massachusetts Boston. (2010).

[10] Alberto Migliore, John Butterworth, and Debra Hart, Postsecondary Education and Employment Outcomes for Youth with Intellectual Disabilities, Think College Fast Facts, Issue No. 1, Institute for Community Inclusion, University of Massachusetts, Boston, 2009. This publication was supported by a grant from the National Institute on Disability and Rehabilitation Research (NIDRR). Grantees are encouraged to freely express their findings and conclusions; therefore, points of view or opinions do not necessarily represent official NIDRR policy.

[11] Data shared by NASDDDS Executive Director Nancy Thaler in July 2011 during an NCD-hosted congressional briefing on the state of long-term supports and services for people with ID/DD in honor of the 12th anniversary of the Olmsteaddecision. Data originated from J. Butterworth, A. Cohen Hall, F. A. Smith, A. Migliore, and J. A. Winsor, The National Report on Employment Services and Outcomes,Institute for Community Inclusion, University of Massachusetts, Boston, 2011, p 19.

[12] Bill Kiernan, director of the Institute for Community Inclusion (UCI) at the University of Massachusetts, and Chas Moseley, deputy executive director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS), developed a policy paper on Employment First strategies and experiences of states that participated in the State Employment Leadership Network (SELN) in 2009. SELN is a national collaborative of ICI and NASDDDS to provide technical assistance to states, focusing on systems change to improve employment outcomes of citizens with ID/DD. In 2001, 26 states were members of SELN. More information can be found at

[13] Kiernan and Moseley, Employment First policy paper, 2009.

[14] For more information on the ADD's Partnerships in Employment Systems Change grants, go to

[15] The Department of Labor's Office on Disability Employment Policy (ODEP) has developed a series of educational materials and toolkits for practitioners on customized employment strategies and approaching the process of discovery. For additional information, go to

[16] Policy brief, Taking a Hard Look at Medicaid and the Economic Well-Being of Americans with Disabilities: Recommendations to Reform and Improve Economic Outcomes for Citizens with Disabilities, 2011. The following national organizations endorsed the recommendations outlined in the policy brief: American Association of People with Disabilities; APSE; Autistic Self-Advocacy Network; Autism Society of America; Center for Self-Determination; National Association of State Directors of Developmental Disabilities Services; National Council on Independent Living; National Disability Institute; National Down Syndrome Congress; National Down Syndrome Society; National Organization of Nurses with Disabilities; TASH; World Institute on Disability. The policy brief can be downloaded at

[17] Developed by Annette Shea, Money Follows the Person (MFP) project officer, Disabled and Elderly Health Programs Group, Division of Community Systems Transformation, CMS, in February 2011 and disseminated to state Medicaid Infrastructure Grant (MIG) and MFP directors at the MIG conference in May 2011 as a tool to help state MFP programs think about how to use MFP funds to provide integrated employment supports for citizens with ID/DD.

[18] The Collaboration to Promote Self Determination is a network of national disability organizations created in 2007 that advocates for high-impact public policy reform aimed at optimizing the economic advancement of citizens with ID/DD (

[19] "Medicaid Program: Home- and Community-Based Services (HCBS) Waiver, Notice of Proposed Rulemaking," 76Federal Register 73 (April 15, 2011, p. 21311). This CMS notice (CMS-2296-P) clarified the kinds of settings for which HCBS waiver funding could be used. The proposed regulation stated that an HCBS setting "must be integrated in the community; must not be located in a building that is also a publicly or privately operated facility that provides institutional treatment or custodial care; must not be located in a building on the grounds of, or immediately adjacent to, a public institution; or, must not be a housing complex designed expressly around an individual's diagnosis or disability, as determined by the Secretary…[and] must not have qualities of an institution, as determined by the Secretary. Such qualities may include regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individual's ability to engage freely in the community."

[20] Autistic Self-Advocacy Network, Self-Advocates Becoming Empowered, and National Youth Leadership Network,Keeping the Promise—Self-Advocates Defining the Meaning of Community Living, (May, 2011) KeepingthePromiseofCommunitySABEFinalApproved.pdf

[21] Ibid.

[22] Braddock et al, Coleman Institute and Department of Psychiatry, University of Colorado, 2011. Data from the 2010 State of the States in Developmental Disabilities, a national data collection initiative managed by the Coleman Institute and funded by ADD and NIDRR.

[23] To date, the following states have closed all intermediate care facilities for the mentally retarded: District of Columbia (1991), New Hampshire (1991), Vermont (1993), Rhode Island (1994), Alaska (1997), New Mexico (1997), West Virginia (1998), Hawaii (1999), Maine (1999), Minnesota (2000), Indiana (2007), Michigan (2009), Oregon (2009), and Alabama (2012).

[24] Presented by N. Thaler at NCD Congressional briefing, 2011.

[25] For a summary of the 2011 Living Forum hosted by NCD in Portland, Oregon, May 6–7, 2011,

[26] On September 12, 2011, CMS released guidance on the Balancing Incentive Program: Total funding is not to exceed $3 billion in federal matching payments. Once CMS approves a state's application, the funding is available beginning October 1, 2011, and ending September 30, 2015, or whenever the $3 billion has been expended. Effective October 1, 2011, the Balancing Incentive Initiative began offering a targeted increase in the FMAP to states that undertake certain structural reforms to increase access to noninstitutional LTSS. The increased matching payments are tied to the percentage of a state's noninstitutional LTSS spending, with lower FMAP increases going to states that need to make fewer reforms. States in which 25–50 percent of total expenditures for LTSS are directed toward noninstitutionally based supports are eligible for a 2 percent enhanced FMAP. States in which less than 25 percent of total expenditures for Medicaid LTSS are for noninstitutionally based LTSS are eligible for a 5 percent enhancement.