View Research by Author - Kirsten Black

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After accounting empirically for methodological differences, three national population-based surveys from the period between 1999 and 2002 provide similar estimates of the size and characteristics of the older residential care population: About 2.2 million persons age 65 or older (6.5 percent) live in supportive settings, about 1.45 million of them in nursing homes and nearly 800,000 in alternative residential care. Depending on survey definitions of "facility" versus community settings, however, the estimated proportion of the residential care population in “community” settings ranges from about half to three-quarters. Elders in community residential care appear to have less severe disability and are far more likely to report no ADL or IADL disabilities than those in “facility” alternatives to nursing homes. The age and gender distribution of persons in residential care alternatives and nursing homes is similar, but those in residential care alternatives more likely to be white and less likely to have extremely low incomes.

States are increasingly interested in the individual budget model for older Medicaid beneficiaries as a mechanism to improve responsiveness of benefits to beneficiaries' needs and preferences and to increase their ability to remain outside or leave nursing homes. The "individual budget" model is a service option that originated in the Cash and Counseling Demonstration in three states in the late 1990s. As of January 2006, the model had been implemented for elderly Medicaid beneficiaries in some form by an additional seven states, and 12 other states were in the process of implementing programs. This report describes the 10 operating individual budget model programs serving older persons, identifies four areas of program design that are of particular importance to the success of the model, and provides more detailed profiles of programs in three states.

In recent years, several initiatives in publicly financed services for older persons with disabilities have focused on supporting community residence through greater beneficiary control and flexibility in choosing the services and supports that best meet their needs. This movement has gained strength from state efforts to "rebalance" public long term care spending from institutional care to community-based alternatives. State innovations in Medicaid-financed community based long term care have tended to move programs along a continuum from the traditional set of service benefits toward the ultimate flexibility that may be achieved with a beneficiary-managed individual budget to purchase a preferred menu of services and supports. The beneficiary-managed individual budget model originated in the Cash and Counseling Demonstration. This brief describes the evolution of the model since the original demonstration and provides an overview of state activity as of January 2006 in developing individual budget model programs for elderly beneficiaries.

Informal caregiving—unpaid help primarily provided by spouses and children—remains the most common source of long-term care for older persons with disability in the U.S. This report updates previously published trends in formal and informal care from the 1984 and 1994 National Long Term Care Survey. The earlier study found a significant decline in the number of family caregivers, accompanied by a significant increase in use of formal care from paid workers, especially in combination with informal care. Data for 1999 indicate that, contrary to the previous trend, formal care use fell dramatically between 1994 and 1999, while the rate at which spouses and children provided care remained stable. Increased reliance on only assistive devices or informal care accompanied the decline in formal care. In general, the greatest increase in use of assistive devices without help occurred among older persons with fewer informal resources and lower levels of disability.

This review of existing estimates confirms an upward trend in the number of facilities, beds, and residents in residential care alternatives to nursing homes, often collectively referred to as "assisted living." Estimates vary substantially, however, depending on the methodology and the type of data used. Key sources of differences are population included (i.e. aged, all ages); definition used to identify assisted living, and for population-based surveys that include both community and facility settings, survey-specific definitions of "facilities" and whether settings identified as assisted living are limited to those meeting the survey-specific facility definition. Greater disagreement exists with respect to trends in the number of nursing homes and users, even between estimates from the same data source.

This study explores how low-income functionally impaired, elderly persons are able to remain in the community without home- and community-based care (HCBC). We find that, while most rely on informal care and Medicare home care services, many go without needed services. In a comparison with participants, the non-participants were found to be significantly more likely to enter a nursing home. While the study cannot attribute the higher nursing home entry to the absence of HCBC services with certainty, the findings raise the possibility that an expansion of HCBC services could delay the need for nursing home care for this population. (Long, Sharon, Liu, Korbin, Black, Kirsten, O'Keeffe, Janet, and Molony, Sheila. 2005. "Getting by in the Community: Lessons from Frail Elders." Journal of Aging & Social Policy 71(1): 19-44.)

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