Association of University Centers on Disabilities Applauds Senate for Examining Proposals to Reform Institutional Bias in Medicaid

April 7, 2004

Kim E. Musheno
Director of Public Policy

SILVER SPRING, MD (April 7, 2004) - The Association of University Centers on Disabilities (AUCD, formerly the American Association of University Affiliated Programs) applauds Senator Grassley and other Members of the Senate Finance Committee for seeking improvements in the long term services and supports system for people with disabilities.

AUCD has long advocated for reforming the institutional bias in the Medicaid program. Currently, over 75 percent of Medicaid long-term care dollars are spent on institutional services, leaving few dollars for community-based services. "A national long-term services policy should not favor institutions over home and community-based services. It should allow families and individuals real choice regarding where and how services should be delivered," said association President David Johnson. "People with disabilities do not have enough quality services and supports in the community to meet their needs. Individuals continue to languish on interminable waiting lists for services; receive inadequate or poor quality services; are forced to impoverish themselves in order to get services; or are forced to live in more costly institutions away from family, friends, and community life."

AUCD believes that national policy must be reformed to meet the unmet needs of people with disabilities in the community. The 1999 U.S. Supreme Court decision in Olmstead v. L.C. and E.W. has provided more impetus for states to re-design their systems to improve their capacity for serving individuals in their own homes or communities; and the Federal government must support states to comply with this important decision.

AUCD strongly supports pending proposals in Congress that would help to begin to rebalance and expand the long term care system and to provide quality supports and services in the community. These include the following:

  • Medicaid Community-Based Attendant Services and Supports Act of 2003 (MiCASSA, S. 971/H.R. 2032)
  • Money Follows the Person Act of 2003 (S. 1394)
  • New Freedom Initiative (NFI) Medicaid Demonstrations Act (transmitted to
    Congress from the Administration but not yet introduced)

MiCASSA would help to eliminate the institutional bias in Medicaid by requiring states to include community based personal assistance services in their Medicaid plans. This would allow individuals who qualify for nursing home services through Medicaid to have the choice to use those dollars for community based services and supports.

The Money Follows the Person Act and the New Freedom Initiatives (NFI) Medicaid Demonstrations Act would provide demonstration grants to states to help individuals transition from institutions to community settings. These proposals would also provide financial incentives for states to rebalance their long term care systems and provide more cost-effective choices between institutional and community options.

The New Freedom Initiatives Medicaid Demonstrations Act would also provide demonstration grants for states to develop quality community-based supports and services, such as respite care for caregivers of children and adults with disabilities, to help families support their loved ones at home. At a time when federal and state fiscal resources are so limited, relatively minimal investments in respite care help family caregivers to continue to provide this care at home and in the community. Without respite and other family supports, some families are forced to place their family members in more costly institutional or foster care placements.

The NFI proposal would also address the direct care workforce crisis by providing grants to states to identify and test methods to address shortages of community service direct care workers; providing competitive grants to states for community-based alternatives for children with psychiatric disabilities enrolled in the Medicaid program; and would remove disincentives for people with disabilities to return to work by protecting the Medicaid health insurance coverage of spouses, if those spouses also have a disability.

AUCD believes that the 108th Congress should work in a bipartisan manner to develop and pass legislation that incorporates the policies in MiCASSA, the Money Follows the Person Act and the New Freedom Initiatives Medicaid Demonstrations Act.

Authorized under the Developmental Disabilities Assistance and Bill of Rights Act, AUCD's University Centers for Excellence in Developmental Disabilities, have been instrumental in providing systems change through research, education and training, advocacy, and the provision of quality services to and supports for people with disabilities in the community. AUCD stands ready to assist the Congress to achieve these policy goals.