Adults With Severe Disabilities:

Federal and State Approaches for Personal Care and Other Services

HEHS-99-101: Published: May 14, 1999. Publicly Released: May 14, 1999.

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Pursuant to a congressional request, GAO provided information on community-based, long-term care for severely disabled adults, focusing on: (1) the number and characteristics of adults with severe disabilities; (2) the federal assistance available to such individuals; (3) Medicaid coverage of personal care and related services; and (4) how a sample of selected states have implemented Medicaid policies that allow consumers to select their own caregivers, an approach called consumer direction.

GAO noted that: (1) GAO's analysis of 1994-1995 National Health Interview data showed that 2.3 million adults of all ages lived in home- or community-based settings and required considerable help from another person to perform two or more self-care activities; (2) adults with disabilities were more likely than the general population to live in a family with an income of less than $20,000 and were almost twice as likely to live below the poverty threshold; (3) 84 percent of adults aged 18 to 64 with severe disabilities were either out of work or did not participate in the workforce; (4) over 80 percent of the adults with severe disabilities in GAO's sample reported having public health insurance, primarily Medicare, Medicaid, or both; (5) at least 70 different federal programs provide assistance to individuals with disabilities; (6) having a disability is a central eligibility criterion for 30 programs that have estimated fiscal year 1999 expenditures totalling $110 billion; (7) the majority of these funds are used to pay cash benefits, primarily through the Social Security Disability Insurance and Supplemental Security Income programs; (8) for a second, larger group of 40 programs, disability is one of many potential eligibility criteria; (9) within these 40 programs, Medicare and Medicaid are the most significant sources of federal funds that cover nonskilled personal care services for individuals with disabilities; (10) most Medicaid personal care and related services are optional benefits that are provided at the discretion of each state; (11) the fastest growing expenditures are for Medicaid home- and community-based services (HCBS) waivers, which grew at an average annual rate of 31 percent between 1987 and 1998; (12) states apply to the federal government for HCBS waivers, which, if approved, allow states to limit the availability of services geographically, target specific populations or conditions, control the number of individuals served, and cap overall expenditures; (13) however, recent court challenges to the limits imposed by HCBS waivers have raised questions regarding whether states will be allowed to continue these practices; and (14) the consumer direction policies of California, Kansas, Maine, and Oregon's Medicaid programs reflected the advantages and complexities of self-direction as well as the competing concerns among states, caregivers, and consumers.

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