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May 2012

ABLE Act Gains Cosponsors and Momentum on Capitol Hill


The Achieving a Better Life Experience (ABLE) Act continues to gain support in Congress. Thanks to a recent push by national disability groups, including NDI, National Down Syndrome Society, National Fragile X Foundation, Autism Speaks, Muscular Dystrophy Association, D.A.D.S National, National Down Syndrome Congress, Disability Opportunity Fund, and the Collaboration to Promote Self-Determination, the bill has reached 18 cosponsors in the Senate and 152 cosponsors in the House.


On April 25th, the aforementioned organizations hosted a national call-in day, during which affiliates and members of national organizations contacted members of Congress-calling, Tweeting or posting on members' Facebook pages-and encouraged them to become cosponsors of the ABLE Act.


The questions remains as to whether the ABLE Act can be passed in the 112th Congress, given partisan gridlock. The bill has been endorsed by almost 50 national, state and local advocacy organizations and has not been met with significant opposition. It also has widespread bipartisan support. Currently, the ABLE Act is awaiting a CBO score, and its Congressional Champions are exploring budget offset (or "pay for") options.


So can the ABLE Act pass this Congress? Our Congressional Champions are optimistic. The ABLE Act will give individuals with disabilities and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary's employment, and other sources.


It's up to disability organizations like NDI and disability advocates to raise awareness on why this legislation is important. It's not too late to contact your Senator and/or Representative to urge him or her to sign-on as an ABLE Act cosponsor!


HHS Releases Long-Awaited Final Rules on Community First Choice



After months of delay, federal officials agreed to release the final rules governing the new State option to provide home and community-based attendant services and supports created by Section 2401 of the Affordable Care Act. The supports, the Community First Choice (CFC), allows states the option of receiving increased federal matching funds for community living, provided they agree to eliminate caps on the number of persons allowed to live in the communities.


The regulations, which were to have been made public last October, have been delayed repeatedly, creating confusion for states seeking to create community living programs. The decision by Medicaid officials to release the long anticipated regulations came in large part as a result of protests last month by the group ADAPT outside the Department of Health and Human Services Building in Washington, in which they blocked the entrances to the building.


The change offers potential benefits to both states and individuals receiving services. It provides states an opportunity to save money by increasing the federal Medicaid match and allowing them to receive an additional 6 percentage points in Federal Medical Assistance percentage (FMAP) when they provide CFC services and supports, and it creates additional opportunities for individuals to receive services in their homes. A summary of the benefits in the final rule noted that the provision "will likely increase States and local accessibility to services that augment the quality of life for individuals through a person-centered plan of service and various quality assurances, all at a potentially lower per capita cost relative to institutional care settings." The rule estimated that the federal cost for 2012 was $820 million and $480 million for states.


As HHS Secretary Kathleen Sebelius noted in announcing the rule (as well as an Independence At Home Demonstration program designed to encourage primary care practices to provide home-based care to chronically ill Medicare patients), "[P]eople frequently prefer to receive services in their own homes and communities whenever possible. The rule and demonstration announced today give people choice and provide states with flexibility to design programs that better meet the needs of beneficiaries. ... The actions taken today will help change that and can lead to better health for these individuals."


The final rule clarifies that states electing the option "must make available home and community-based attendant services and supports to assist in accomplishing activities of daily living, instrumental activities of daily living, and health related tasks through hands-on assistance, supervision, and/or cueing." Optional services that can be provided by the state including transition costs such as rent and utility deposits, bedding purchases, basic kitchen supplies, and other necessities required for transition from an institution.


The focus now switches to individual states to encourage participation. States are required "to use a person-centered plan that is based on an assessment of functional need and allows for the provision of services to be self-directed under either an agency provider model, a self-directed model with service budget, or other service delivery mode defined by the state and approved by the Secretary." 

DOJ Brief Argues Sheltered Workshops May Violate Title II Integration Regulation 


The United States Department of Justice has filed a legal brief in support of the plaintiffs in a landmark federal lawsuit challenging the state of Oregon's "over-reliance on sheltered workshops and its failure to timely develop and adequately fund integrated employment services" in violation of the protections against discrimination under the federal Americans with Disabilities Act and the Rehabilitation Act.  The suit, a class action brought by several disability advocacy groups in behalf of 2,300 people in the state of Oregon working in sheltered workshops, is believed to the first of its kind in any state.


The Justice Department brief is a "Statement of Interest," the technical name for the federal legal procedure allowing "[t]he Solicitor General, or any officer of the Department of Justice ... to attend to the interests of the United States in a suit pending in a court of the United States, or in a court of a State, or to attend to any other interest of the United States."  In the brief, the Department explains that it was responsible for enacting the regulation at issue involving Title II of the Americans with Disabilities Act, which provides that "a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities." The DOJ further notes that the Supreme Court has interpreted those regulations to mean that the "unjustified isolation" of persons with disabilities constitutes discrimination under the law.


UPDATE: In a late development, the Court this week issued a technical ruling granting the state's motion to dismiss the case, finding that the plaintiffs had failed to properly state a claim. The Court allowed the plaintiffs to amend their complaint and in the 16-page ruling essentially endorsed the idea that plaintiffs have valid claims under Title II of the ADA and that the integration mandate applies to the provision of employment-related services.


The original complaint in the case asserts that the State, instead of placing the plaintiffs, who are individuals with intellectual or development disabilities, in an integrated employment setting with appropriate supports and services, put them in sheltered workshops, "in which they have little or no opportunity to interact with non-disabled workers or learn valuable skills that would assist them in working in competitive employment."


The Justice Department asserts that Oregon's actions in running its sheltered workshops violate the ADA, which "brings within its scope 'anything a public entity does,'" and applies "to all programs, services and activities of public entities." The state claimed it is limited to "residential programs."  The lawsuit was brought in Oregon because that state at one point was a national leader in providing vocational training services that helped integrate developmentally disabled workers into actual community-based jobs earning minimum wage or better but over the last decade has "reversed course, increasing its reliance on segregated workshops while simultaneously decreasing its development and use of supported employment services."


Earlier this year, applying a similar interpretation of the law in which employment services are included with the ADA's mandate, the Justice Department was able to reach a settlement with the state of Virginia in which the state agreed to adopt a 10-year plan to transform its system for people with disabilities and ensure that these individuals are moved into more integrated settings. 

HHS Announces the Creation of the Administration for Community Living


The Department of Health and Human Services recently announced the creation of a new agency, the Administration for Community Living, uniting under one roof three organizations and offices serving seniors and individuals with disabilities: the Administration on Developmental Disabilities, the Office on Disability, and the Administration on Aging.


The change, explained HHS Secretary Kathleen Sebelius, "supports both cross-cutting initiatives and efforts focused on the unique needs of individual groups, such as children with developmental disabilities or seniors with dementia."  The agency, "seeks to enhance and improve the broad range of supports that individuals may need to live with respect and dignity as full members of their communities."


The initiative, which builds on an effort the Obama Administration has called the "Year of Community Living," also increases the focus on addressing the lifelong needs of people with disabilities. "Our efforts ... are lifespan and not unique to childhood," noted Sharon Lewis, the commissioner of the Developmental Disabilities Agency, who pointed out that the Administration on Developmental disabilities previously had been within HHS's Administration for Children and Families


The new agency will continue to work with the Centers for Medicare and Medicaid Services, "especially those served by Medicaid, as well as working with CMS to promote home and community based services and supports." The current Assistant Secretary for Aging, Kathy Greenlee, will also serve as the Administrator of the Administration for Community Living. The current Director of the Office on Disability will become principal deputy administrator of the ACL, and will also continue in his role as the principal advisor to the Secretary on disability policy and serve as a member of her senior staff. No new legislation is required to make the organizational changes nor is senate confirmation required for the new organization's administrators.

National Council on Disability Releases Report on Exploring New Paradigms for the Developmental Disabilities Assistance and Bill of Rights Act 


The recent release of a new supplement to an important report on the Developmental Disabilities Act offers advocates and legislators alike significant new analysis and key recommendations to ensure that the law achieves its goals. The supplemental report, published by the National Council on Disability, updates and expands the discussion and recommendations contained in the group's critical 2011 report Rising Expectations: The Developmental Disabilities Act Revisited .


The original report addressed the need to revitalize and enhance the law's purpose, which originally involved the creation of a set of principles and programs intended to protect civil and human rights and help ensure that individuals with intellectual and developmental disabilities have the opportunity to achieve their maximum potential through increased independence, productivity, and integration into the community. Today, however, as the Rising Expectations report documented, the goals must be translated into and coordinated with a federal strategy that focuses on full participation in the community for individuals with intellectual and developmental disabilities, including optimal self-sufficiency and economic advancement.


The original report addressed three underlying questions: What has the law accomplished since it was passed nearly forty years ago; what are the strengths and weaknesses of the current structure; and is the existing structure appropriate for addressing the current and future social and policy environment? The report documented how attitudes, policies and services for people with disabilities have changed over the years, including the significant improvement in the public perception of people with disabilities and the expectations held for these individuals, including by individuals with disabilities and their families. It demonstrated how the majority of publicly financed support systems have failed to keep pace with the best practices and the evolving enhanced expectations. As a result, citizens with disabilities continue to face barriers to accessing health care, housing, employment and community supports intended to ensure their full participation in society.


Building on this evidentiary foundation, the just-released supplement offers specific opportunities and recommendations, including regulatory and legislative strategies, to expand the infrastructure and build a comprehensive and effective policy framework that helps to fully realize the vital goals of the Developmental Disability Act - to ensure that people with intellectual and developmental disabilities live free of abuse and violations of their legal and human rights, and to provide them the information, skills, opportunities, and support to make informed choices about their lives, have interdependent friendship and relationships, and be integrated into society so that they can pursue meaningful, productive lives while exercising their full rights and responsibilities as citizens.


The new report's recommendations are divided into three sections. The first section address the need to reform the federal and state infrastructure, and focuses on increasing the authority and prominence of the Administration for Development Disabilities (ADD) and strengthening coordination within the developmental disability network. Among the goals are to establish a funding stream for self-advocacy and to improve sustainability through collective responsibility.


The second section addresses the need to improve outcomes "across the lifespan." A central focus of this section is on educational opportunities, the connection with employment, and the need to ensure high expectations, particularly in the transition from youth to adulthood. The section also addresses definitions of community, the promotion of inclusion and full participation, and the need to realign public resources to prioritize home and community based services.


The final, brief section of the report addresses the challenge of achieving this kind of transformation in the midst of a fiscal crisis. Though it is a challenge, the report explains that by realigning public policy and adapting the antiquated "all-or-nothing" systems of serving people with disabilities that have existed since passage of the Development Disabilities law, we can fully achieve the goals of this law. To do so requires a federal commitment and funding, but also policies that embrace the highest expectations of and for citizens with disabilities and that promote self-sufficiency and independence. The result will be to end the kind of segregation individuals that plagues our nation, ensure individuals with disabilities receive basic legal and human rights to which everyone is entitled, and allow them to make meaningful contributions to society.  

Slow Economic Recovery Not Impacting Workers With Disabilities


With the current unemployment rate down .0.8% for the population without disabilities, the rate for those with disabilities is up slightly from April 2011, at 2%. However, the labor participation and employment-population ratio for citizens with disabilities is down slightly from this time last year. The slow economic recovery is not having a significant impact on employment opportunities for those with disabilities.





Apr 2011

Apr 2012

Apr 2011

Apr 2012

% of population in the labor force






Employment-population ratio 






Unemployment Rate





As reported by the U.S. Department of Labor's Bureau of Labor Statistics, Table A-6


Vol: 4 Issue: 4
In This Issue
1. ABLE Act Gains Cosponsors and Momentum on Capitol Hill
2. HHS Releases Long-Awaited Final Rules on Community First Choice
3. DOJ Brief Argues Sheltered Workshops May Violate Title II Integration Regulation
4. HHS Announces the Creation of the Administration for Community Living
5. National Council on Disability Releases Report on Exploring New Paradigms for the Developmental Disabilities Assistance and Bill of Rights Act
6. Slow Economic Recovery Not Impacting Workers With Disabilities

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