Home is in the Community

Most people with I/DD share the dream of living in the community in a home of their own.  For some, that dream may become a reality.

Earlier this week, Health and Human Services (HHS) Secretary Kathleen Sebelius announced that the federal government will dedicate billions of dollars to help individuals with disabilities access care in the community as opposed to institutions.

“There is more evidence than ever that people who need long-term care prefer to live in their own homes and communities whenever possible,” said Donald Berwick, administrator of the Centers for Medicare and Medicaid Services. “To restrict these individuals to institutions where even the simplest decisions of the day such as when to get up, what to eat and when to sleep are made by someone else must no longer be the norm.”

HHS is also proposing new rules to allow states to access additional federal Medicaid matching funds if they encourage individuals to live in a community setting, as opposed to a nursing home or other institutional setting.

Thirteen states are slated to receive about $45 million for demonstration grants this year, with $621 million budgeted through 2016.   Federal officials are awarding $621 million over the next five years to expand the Money Follows the Person to help people with disabilities who are living in institutions transition into the community with services and supports programs.

The new grants will have an impact on 13,000 people in Colorado, Florida, Idaho, Maine, Massachusetts, Minnesota, Mississippi, Nevada, New Mexico, Rhode Island, Tennessee, Vermont and West Virginia.

The Arc believes that adults with I/DD should have the opportunity to lead lives of their own choosing, reside in the community and to live independently with ready access to whatever services and supports they need to be included and participate as full members of the community.

The Arc Receives ACF Award of $1.87 million for National Autism Resource and Information Center

Washington, DC – The Administration on Developmental Disabilities (ADD), within the Administration for Children and Families (ACF) at the U.S. Department of Health and Human Services, announced yesterday that The Arc would receive an award of $1.87 million for fiscal year 2010 to establish a national resource and information center on Autism Spectrum Disorder (ASD) and other developmental disabilities.

The Arc, in collaboration with several key partners will implement an innovative and dynamic initiative, called Autism NOW: The National Autism Resource and Information Center to engage and leverage a national network of disability, aging, military, and family organizations to deliver information and resources relevant to individuals with ASD and other developmental disabilities.

“The Arc and our partners are primed and ready to build a dynamic resource to address the needs of people with ASD and other developmental disabilities through this national network. We are proud to have the opportunity to launch Autism NOW, a much needed resource. It is especially significant that self-advocates will have a meaningful role in leading, implementing and realizing the goals of this innovative project,” said Peter V. Berns, CEO of The Arc.

Other partners include the Autistic Self Advocacy Network (ASAN), and Self Advocates Becoming Empowered (SABE) to provide expertise from the self-advocate perspective. For research expertise in key areas across the lifespan in ASD and other developmental disabilities, The Arc has partnered with members of the Association of University Centers on Disabilities (AUCD) Network, also referred to as UCEDDs (University Centers on Excellence in Developmental Disabilities), the Institute for Community Inclusion from the University of Massachusetts, the Developmental Disabilities Institute from Wayne State University, and the Center for Community Inclusion and Disability Studies from the University of Maine.

For deep policy expertise in areas of autism, family support, health care implementation, and aging, partners incude Brandeis University’s Heller School of Public Policy and the National Council on Aging (NCOA). The Arc has engaged a national dissemination team that will connect efforts to key stakeholders in every state and territory in the United States, including the National Association of Councils on Developmental Disabilities (NACDD), National Disability Rights Network (NDRN), Association of University Centers on Disabilities (AUCD), the National Military Family Association (NFMA), National Council on Independent Living (NCIL), and the American Association on Intellectual and Developmental Disabilities (AAIDD). Other key autism organizations will also be included in the Center’s activities.

The project will be led by Ann Cameron Caldwell, Ph.D., the Chief Research and Innovations Officer for The Arc and Tonia Ferguson, Special Projects Director.  “The new National Autism Resource and Information Center will fill a great need in the autism community by providing high-quality resources and information on community-based services and interventions for people with ASD and their families.  The Arc understands the challenges that families face; and we also recognize the vast contributions that people with ASD and other intellectual and developmental disabilities make to our societies and communities,” Caldwell said. “We are proud to have people that identify as having ASD or other intellectual and developmental disabilities (self-advocates) as full partners leading and implementing this initiative.”

“Autism is a heart-wrenching condition that presents special challenges for many families,” said HHS Secretary Kathleen Sebelius. “We want families to know that we are listening to them, and
the release of this grant award, brings us one step closer to providing the resources needed to improve the quality of life for people with ASD and other developmental disabilities.”

“People with ASD and other developmental disabilities face significant challenges in accessing the supports they need,” said Commissioner Sharon Lewis of ADD. “This new center will serve to connect people with ASD and their families to services and activities that promote self-determination, independence, and inclusion in the community.”