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ASAN Letter to House Appropriations on HHS & HCBS

To:      U.S. House of Representatives Committee on Appropriations

Subcommittee on Labor, Health & Human Services, Education and Related Agencies

I am writing on behalf of the Autistic Self Advocacy Network to support continued appropriations to support Home and Community-Based Services (HCBS) and community integration-related activities. ASAN is the leading national organization representing Autistic Americans, and our membership includes people with a wide range of support needs who receive a wide range of Home and Community-Based Services. On behalf of our membership, ASAN vigorously advocates for continued  appropriations to support Home and Community-Based Services, including efforts that would lead to downsizing or closure of institutional or segregated facilities such as Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID), congregate residential facilities, sheltered workshops, or segregated day habilitation programs. These activities may be conducted by any component of HHS, including the Administration on Intellectual and Developmental Disabilities (AIDD), the National Council on Disability (NCD), and the Centers for Medicare & Medicaid Services (CMS). Far from depriving individuals of choice, these efforts help to rebalance public spending toward the community-based services and supports overwhelmingly favored by people with disabilities and their families.

Community integration efforts help bring federal funding for disability-related services into alignment with the 1999 Olmstead decision, which requires services to be delivered in the most integrated setting possible. Many people with disabilities who need long-term services and supports continue to be forced into nursing facilities and other institutions against their will because adequate community-based services were not available. Segregated and institutional settings are rife with opportunities for abuse, in addition to being significantly more costly than community-based settings.

An essential component of community integration efforts is enforcement of regulations that ensure that federal funds specifically earmarked for integration are not used to fund institutional or segregated placements. In order to make community-based services available, it is often necessary to rebalance funding toward community-based services as opposed to institutional settings. For example, Congress authorized federal reimbursement to states who provide Home and Community-Based Services through their Medicaid programs. HCBS programs were designed specifically to promote fully integrated service delivery settings in the community—in other words, supporting the self-determination of people with disabilities by providing meaningful choices for where they can live, work, and receive services in their own homes and communities. It is vitally important that HCBS funds are not used for any settings, programs, or types of services that are not truly integrated and based in the community. Inclusion of any language prohibiting use of congressional appropriations for enforcement of regulations governing HCBS settings would deprive people with disabilities of choice and force them to live and receive services in restricted and segregated settings instead of the community.

People with disabilities have fought for decades to make meaningful choices about community-based options a reality. We believe that all people should have the right to stay in their own communities, and that it is imperative for the past several decades’ move away from institutions to continue. We urge the Appropriations Committee to ensure that HHS is able to continue its vital work on HCBS implementation and community integration. This work will ensure that many more people with disabilities have the opportunity to transition out of unnecessarily restrictive settings and live in fully integrated communities.



Ari Ne’eman

President, Autistic Self Advocacy Network

Washington, DC

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