Personal Care Services for the Disabled: A National Study of Trends in Programs and Policies

Consumer demand, the Supreme Court's Olmstead decision, and policies such as the Presidents' New Freedom Initiative place pressure on state long-term-care (LTC) systems to extend home and community-based (HCB) personal care services. At the same time, 43 states report budget deficits and institutional long-term care provision (e.g., in nursing homes) continues to consume 60 percent of total Medicaid LTC expenditures. Previous studies of HCB services have given limited attention to formal personal care services that help people with disabilities and chronic conditions to live independently. Although the federal government spent $45 billion on personal care for people living at home in 2004, it is estimated that 21 percent of adults residing in the community have unmet need. Thus, the expansion of personal care is a pressing policy concern and there is a critical need for information on program and policy trends.

This paper draws from a unique national survey database to presents the latest available program and policy trends (1999-2005) on the three main programs that deliver personal care: the Medicaid state plan personal care service (PCS) optional benefit, Medicaid 1915(c) HCBS waivers, and Older Americans Act Title III. The program data indicate that growth rates in participants and expenditures are generally flat, and are slowing in some states. Findings from the policy survey show that more than 50 percent of states now use cost caps on their PCS program and an increasing number of personal care waivers operate waiting lists.