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Authors: Charlene Harrington,Ph.D., Allen J. LeBlanc,Ph.D.
Report 16
October 2001
INTRODUCTION | DATA SOURCES | METHODS | FINDINGS | SUMMARY | REFERENCES | ACKNOWLEDGEMENTS
Medicaid is a joint federal-state health financing program for low-income individuals. Historically, federal Medicaid long-term care statutes and regulations have reflected an institutional bias and an orientation toward a medical model of care. As a result, Medicaid long-term care has been nearly synonymous with institutional long-term care. Services have typically been offered in skilled nursing facilities (SNFs) and intermediate care facilities for the mentally retarded (ICF/MRs).
Federal Medicaid long-term care regulations make institutional placement a mandatory program entitlement in all states. In contrast, home and community-based service (HCBS) alternatives are not mandatory entitlements; rather, they are offered at the discretion of each state. The two most significant Medicaid HCBS programs are (1) the Medicaid 1915(c) HCBS waiver program and (2) the Medicaid Title XIX personal care services (PCS) optional state plan benefit. These two programs are the focus of this report.
Congress established the Medicaid 1915(c) HCBS waiver program in 1981 under Section 1915(c) of the Social Security Act (Miller 1992, Miller et al. 1999). This benefit offers a broad array of services, including case management, home health services, personal care, and skilled nursing assistance. Waiver services are available only to Medicaid participants who have been deemed eligible for institutional placement due to their service needs. States can target specific populations for waiver services and limit services in a waiver to a previously established number of participants or to participants living in a previously identified geographic area. By 1997, all states except Arizona and the District of Columbia had one or more 1915(c) HCBS waivers for long-term care services. Nationwide, 234 waivers targeting a variety of populations were in effect by 1999. Arizona operates its Medicaid long-term care program under a capitation arrangement, using a waiver program other than the 1915(c). Washington, D.C., did not begin its 1915(c) waiver program until 1999 (LeBlanc et al. 2000b).
Since 1975, states have had the option of offering personal care, often referred to as personal assistance, as part of their Medicaid benefit package, (i.e., as an optional state plan benefit). As the name indicates, the Title XIX PCS optional state plan benefit offers only personal care, which has various definitions but typically includes assistance with activities of daily living (e.g., bathing, dressing, and eating) and with instrumental activities of daily living (e.g., shopping and cooking). Services falling under the headings of personal care or personal assistance are critical components of HCBS from any viewpoint; however, these services are especially significant to those living with chronic illness and disability because they help facilitate, on a longterm basis, independent living and greater social participation. In essence, they enable many to avoid unwanted and unnecessary institutionalization. Under the state plan benefit, such services must be made available statewide and to all individuals meeting financial and need-based eligibility criteria. These criteria are less stringent than those used for waiver services. Unlike the 1915(c) waiver program, the PCS optional state plan benefit does not require that participants have care needs severe enough to mandate institutional placement. As of 1998-99, 26 states had adopted this benefit as part of their state plans (LeBlanc et al. 2000a).
Until now, it has been difficult to describe the population receiving Medicaid HCBS, as well as the expenditures associated with service provision. In-depth data regarding the 1915(c) waiver program (Harrington et al. 2000a, 2000b, 2000c; LeBlanc et al. 2000b; Miller et al. 1999) and the Title XIX PCS optional state plan benefit (Burwell 1999; LeBlanc et al. 2000a; U.S. Government Accounting Office [USGAO] 1999) have been compiled and made available only recently. This report summarizes the most current data on Medicaid HCBS, combining data from Health Care Financing Administration (HCFA) sources with data collected by the University of California, San Francisco (UCSF). This report presents estimates of program participants and expenditures, including breakdowns by specific populations and types of service.
Finally, it should be noted that home health care services are also a component of Medicaid HCBS. Medicaid regulations stipulate that home health care, like 1915(c) waiver services, are available only to Medicaid participants who would otherwise be in an institution (Harrington et al. 1999a). Thus, to qualify for home health assistance, individuals must demonstrate an institutional- level need for care. Moreover, although home health services may include some unskilled assistance, the services usually involve skilled nursing care on a short-term basis after a hospitalization. Therefore, despite the fact that home health care takes place in the home, in many ways it resembles the care provided in institutions as closely as it does HCBS. Little is known about the numbers of Medicaid home health participants and the resulting expenditures, as described in this report.