PRESS RELEASE: ASAN, NYLN, SABE Issue Joint Report on Home and Community Based Services (HCBS) Stand
Self-Advocacy Organizations Issue New Report on Home and Community Based Services Funding
Joint ASAN-SABE-NYLN Report Aims to Influence Upcoming CMS Regulation
WASHINGTON, DC (May 18th, 2011) - Independent living, freedom and choice - all were focused on in a report developed by a partnership between the Autistic Self Advocacy Network (ASAN), Self Advocates Becoming Empowered (SABE), and the National Youth Leadership Network (NYLN) and funded by the federal government's Administration on Developmental Disabilities. The report - entitled "Keeping the Promise of Community" - is intended to define the meaning of community living, just as the Center for Medicare and Medicaid Services is accepting public comment on a new rulemaking which would put in place standards for how Home and Community Based Services (HCBS) funds are utilized. As of 2009, Medicaid Home and Community Based Services (HCBS) waivers accounted for $33.5 billion in Medicaid long term care spending, approximately three-fourth of which was spent on persons with intellectual and developmental disabilities.
While the original purpose of HCBS funds was for people with disabilities to live comfortably in "home-like environments while receiving care that was designed for their specific wants and needs", the reality of the use is frequently far from the definition. Many experience institution-like living conditions, arbitrary restrictions on personal freedoms, and feel almost completely cut off from society, despite the clear intent of HCBS funding to support people in their communities. To address this, CMS solicited public comment earlier this year on setting minimum quality standards HCBS providers must meet. This new report, issued by the country's three leading self-advocacy groups in the world of intellectual and developmental disabilities, aims to inform CMS' decision-making and the disability community's public comments.
"Ensuring the integrity of Home and Community Based Services is a crucial component of protecting the rights of Americans with disabilities," said ASAN President Ari Ne'eman, "We hope this joint ASAN-SABE-NYLN document will help guide CMS on what people with disabilities ourselves want and - just as important - don't want in our service-provision."
The ASAN-SABE-NYLN report was compiled through interviews with hundreds of self-advocates across the country and a summit attended by national leaders with intellectual and developmental disabilities of all kinds. The report reflects the views and experiences of a wide variety of different self-advocates, including many with significant communication and cognitive challenges, and supports the language of CMS' proposed rulemaking. In addition, the report also identifies ways in which CMS can and should go further in defining community, by laying out five dimensions of community living: a) physical size and structure, b) rights and self-determination, c) qualities and attitudes of providers, d) access to community life; and e) support and access needs. CMS is accepting public comment on the rulemaking until June 14th. ASAN, SABE and NYLN have made the report publicly available to help inform public comment submissions from the disability advocacy community.
CMS' proposed rulemaking requires that entities receiving HCBS funds 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." Features that would make an environment institution-like "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."
The Autistic Self Advocacy Network (ASAN) is the nation's leading advocacy organization run entirely by and for Autistic adults and youth. ASAN's supporters include Autistic adults and youth, cross-disability advocates, family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about persons on the autism spectrum. The organization's activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research and the development of Autistic cultural activities and other opportunities for Autistic people to engage with others on the spectrum.