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Changes in Home Care Use by Disabled Elderly Persons

1982–1994

^a Urban Institute, Washington, DC
^b Duke University, Center for Demographic Studies, Durham, North Carolina
^c Stanford University, Department of Human Biology, Stanford, California

Kenneth G. Manton, Duke University, Center for Demographic Studies, 2117 Campus Drive, Box 90408, Durham, NC 27708-0408 E-mail: kgm{at}cds.duke.edu.

	Abstract

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Objectives. The use of, and changes in the use of, formal (paid) and informal care by elderly persons who are chronically disabled and living in the community was studied.

Methods. Estimates were made of the sources and volume of home care use for persons reporting chronic disability in the 1982, 1989, and 1994 National Long Term Care Surveys. Comparisons were made across disability intensity, survey data, and age.

Results. The analyses showed changes over time in the sources of home care services. Generally, the combined use of both paid and informal home health care increased, whereas the use of either source of care alone decreased. The amount spent on formal care increased with disability level and age.

Discussion. Use of formal sources of care by community disabled elderly residents increased, likely because of changes in the Medicare home health care benefits in 1989. Increased use of home health care was associated with the concurrent use of informal care.

EXPANDING public financing for home-based long-term care (LTC) for disabled elderly persons is an issue that has been debated for almost two decades. Limited public funding is currently available for home care, largely through Medicare and Medicaid, and only under specific circumstances. Public spending for home care is a fraction of the spending for nursing home care, even though the majority of elderly persons needing LTC reside in the community and prefer home care. The majority of home care received by disabled elderly persons is provided by family members (Manton, Stallard, and Corder 1995), many of whom incur substantial personal and economic costs.

The rapid growth of the elderly population is likely to increase future LTC demand. How future LTC requirements will be met is important for elderly persons and their families. It will be helpful to know who is receiving home care, what the sources of payments are, and how much out-of-pocket costs are incurred. To examine national trends and patterns of use of home care, and sources of payment, we analyzed the 1982, 1989, and 1994 National Long Term Care Surveys (NLTCS) and described the use and payment for home care between 1982 and 1994 by disabled elderly persons.

LTC encompassing a range of health, social, and residential services compensates for disabilities caused by physical, cognitive, or mental impairments. Physical disabilities can be measured in terms of dependencies in activities of daily living (ADLs) or in instrumental activities of daily living (IADLs; Katz, Ford, Moskowitz, Jackson and Jaffe 1963; Lawton and Brody 1969). ADL dependencies result in need for assistance in personal care functions. Five ADLs are widely used—bathing, dressing, transferring from bed or chair, toileting, and eating. Dependency in IADLs reflects difficulties performing household chores such as preparing meals, shopping for groceries, and managing money. Some IADLs reflect cognitive as well as physical impairments.

Approximately three quarters of disabled older persons reside in community settings and receive LTC from informal sources such as spouses and other family members (Liu and Manton 1994). A smaller proportion of disabled older persons receive LTC from informal sources and paid caregivers. The roles of informal and paid caregivers differ depending on the circumstances of the disabled older person. Paid care might substitute for informal care in some situations and complement informal care in others (Greene 1983). In a small proportion of cases, disabled older persons use only paid assistance, for example, when the informal care network is fragile and only small amounts of home-based LTC are needed. Whether disabled persons receive home-based care from informal sources only, both informal and paid sources, or only paid sources reflects the type and level of disability, strength of the informal caregiver network, financial resources, and availability of services.

	Long-Term Care Expenditures

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In 1996, $109 billion was spent on LTC: $79 billion for nursing homes and _$30 billion for home-based care (Levit et al. 1997). Of the $30 billion spent on home care, Medicare financed 45%; state and local sources, particularly Medicaid, paid 14%. Individuals paid 20% out of pocket. All other sources (e.g., private insurance) financed the balance.

Medicaid limits coverage to people who are poor by welfare program standards or who become poor by incurring health care expenses. Medicaid's LTC expenditures are mostly for nursing home care; in 1996 Medicaid's LTC expenditures for elderly persons were $31 billion—82% for nursing homes. The remaining expenditures were incurred for home health, personal, and other home and community-based care. Because states have not been uniform in their provision of home and community-based services under Medicaid, access to services varies greatly (Coughlin, Ku, and Holahan 1994).

Medicare focuses on coverage of acute health care costs, although liberalization of eligibility and coverage policies has resulted in sometimes long periods of service use for some beneficiaries. To qualify for home health services, a person must be in need of skilled nursing care or therapy services on an intermittent basis. Most chronically disabled people do not need skilled care but rather nonmedical supportive care and assistance with self-care functions.

Three other programs—the Social Services Block Grant (SSBG), the Older Americans Act, and the Supplemental Security Income (SSI) program—provide support for community-based LTC for impaired elderly persons. Because funding for these programs is limited, their ability to provide LTC is also limited. Some states use "state-only" funds to support home and community-based LTC.

	Policy Context for Home Care

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Public policy interest in home care evolved because of the financial burden to federal and state governments of Medicaid spending for nursing home care, the impoverishing consequences of use of nursing home care by disabled elderly persons, and the preference by elderly persons for home care. Some analysts believe that expanded home- and community-based LTC could be a lower cost alternative to nursing home care, especially for post-acute-care problems (e.g., Stewart, Vandenbroek, Pearson, and Horowitz 1999).

Research and demonstration projects conducted to test community-based LTC as a substitute for nursing home care have had mixed findings. Research in the 1980s generally found that home-based care did not significantly reduce nursing home use (Kemper, Applebaum, and Harrigan 1987). Recent research suggests, however, that states have saved money using home- and community-based LTC (Alecxih, Lutzky, and Corea 1996; U.S. General Accounting Office 1994). Research also found that expanded community-based care improved the quality of life of disabled older persons, as well as of family caregivers. Some studies also reported significant improvements in the health and functioning (Stewart et al. 1999) and social interaction (Kemper et al. 1987) of older persons. Medicare home health care costs have increased rapidly from 1989 to 1996. The 1982–1994 NLTCS showed large declines in the rates of nursing home use (Manton, Corder, and Stallard 1997). The rate of growth of Medicare home health costs was addressed in the Balanced Budget Act of 1997 (Balanced Budget Act of 1997).

Policy makers have been slow to embrace home care because of a fear of rapid expenditure growth (Wiener and Hanley 1992). Because of the popularity of home-based LTC, there has been concern about "woodwork effects" (i.e., induced demand) if such services were made available. The overriding issue, as yet unresolved, is whether the public or private sectors, or a combination, should be financing LTC. Different positions have been taken on who should provide financing. Some proposals would establish a new social insurance program for LTC or include LTC in a national health insurance program. Others would provide tax incentives for the purchase of private LTC insurance. Other proposals include new public funding for care but do not cover all disabled people or all expenses.

As strategies for reforming the financing and provision of LTC evolve, data on the disabled population and its use of LTC will be helpful in informing policy makers about the beneficiaries of various reform options. In this article we present data on a subset of all persons requiring LTC: disabled older community residents.

	Methods

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We used data from the NLTCS, which were designed to measure the prevalence of chronic disability and institutionalization in the U.S. elderly, Medicare-enrolled population, and changes experienced by those individuals (Manton et al. 1997). We used data from the 1982, 1989, and 1994 surveys. The three surveys used the same survey methodology and instruments (Manton et al. 1997). Data were drawn from lists of Medicare-eligible persons aged 65 and older for 173 primary sampling units (PSUs). Because of the two-stage sample design, only persons with chronic disability were given detailed community interviews. To assume that all persons aged 65 and older are represented in each year, we gathered an age-in sample of 5,000 persons who passed age 65 between survey data. In 1994 samples of healthy persons and persons aged 95 and older were also drawn. Comparisons could be made between years to determine trends in the use of home care services between 1982 and 1994.

The detailed community interviews in 1982, 1989, and 1994 elicited information on persons identified as chronically disabled (i.e., having a disability that lasted, or was expected to last, at least 90 days) according to 9 ADL or 11 IADL questions. Of relevance for policy initiatives, the NLTCS collected data on the five "core" ADLs—bathing, dressing, transferring, toileting, and eating. A study by Wiener and Hanley 1992 suggested that ADLs can be relatively well measured in a variety of national surveys.

Another set of questions in each NLTCS referred to caregivers of disabled elderly persons. Data collected included the relation of the caregiver to the disabled person, whether the caregiver was paid, sources of payment if the caregiver was paid, and how much the disabled person paid out of pocket. The 1989 and 1994 NLTCS elicited data on how many hours of care disabled persons received in the preceding week from caregivers. Comparable data were not available from the 1982 NLTCS.

In addition to data on disability levels and caregiver profiles, information about prior use of health care, income, living arrangements, and demographic characteristics was collected in the NLTCS. These data are useful in estimating how disabled subgroups' use of home-based LTC differed.

	Findings

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We first describe the population of disabled elderly persons, their disability status, and their informal and paid caregivers. Second, we describe disabled elderly persons who received paid home care and sources of payment. Third, we describe persons paying home-based services out of pocket, the amounts paid, and the relation between characteristics of those persons and out-of-pocket payments.

Disabled Elderly Persons
The numbers of elderly persons in 1982, 1989, and 1994 residing in institutions and in the community, according to their disability level, are shown in Table 1 . The number of elderly persons in the United States increased from 27 million to 33 million between 1982 and 1994. In each of the three years, 16–18% of the total elderly population was disabled and residing in the community; 5–6% resided in institutions. The number of disabled elderly community residents increased from 4.8 million to 5.3 million between 1982 and 1989 and decreased slightly between 1989 and 1994. Despite the aging of the population aged 65 and older, the institutional population increased little between 1989 and 1994 (Manton et al. 1997).

A shift toward paid caregivers
To analyze trends in types of caregivers assisting disabled elderly people between 1982 and 1994, we classified caregivers as paid helpers, informal helpers, and both paid and informal helpers. Table 2 contains data on disabled persons recorded by the NLTCS as having caregivers in the reference weeks of the 1982, 1989, and 1994 surveys (90% of the community disabled elderly persons).

The proportion of persons who used both paid and informal helpers increased with ADL dependency. There were decreases, with increasing ADL dependency, in the proportions of persons using only paid or only informal care. That is, the more severely disabled a person was, the less likely either informal or paid care, by itself, could meet the needs of that person. In 1994, 28% of disabled elderly persons had both informal and paid assistance, and 55% of persons with five ADLs received combined assistance.

The data clearly indicate that paid care increased between 1982 and 1994 for disabled elderly persons receiving home-based LTC. The increase is due to many factors, such as higher incomes, worse health, and less availability of informal caregivers. Policy changes in publicly financed home services under Medicaid and Medicare (e.g., expansion of home- and community-based care services under Medicaid and liberalization of coverage requirements under Medicare's home health benefit) could account for increases in paid care between 1982 and 1994. Through the 1980s, Medicaid expenditures for community-based care increased dramatically. For example, between 1984 and 1990, real spending grew at an annual rate of 24.6%. Such increases slowed in the early 1990s, but expenditure growth still remained high, averaging about 15% per year (Coughlin et al. 1994). Similarly, Medicare home health care expenditures increased rapidly between 1990 and 1996, averaging approximately 25% per year. The growth in Medicare home health care expenditures was due, in large part, to liberalization in 1989 of eligibility and coverage policies that resulted from a court ruling (Scanlon 1997).

Helper hours increased with ADL dependency
We examined data from the 1989 and 1994 NLTCS on the hours of helper assistance in the preceding week received by disabled persons; comparable data was not available in the 1982 NLTCS. Table 3 presents the distribution of disabled persons by number of helper hours received during the week and summary measures of helper hours in terms of the average and median (50th percentile) for each ADL category. None indicates no help was provided during the reference week.

In 1989, persons with three ADLs received an average of 35 h of assistance in a week. Those with five ADLs averaged 83 h. In contrast, persons with only IADL dependencies received only 14 h of assistance in a week, and half of them received fewer than 8 h. One study found Medicaid home care recipients with three or more ADLs received approximately the same total hours of care regardless of the amount of informal family contributions—in 1995, an average of 65 h per week (Hokenstad, Ramirez, Haslanger, and Finneran 1998). Between 1989 and 1994, the means and medians decreased, particularly for persons with high levels of ADL dependency. The reasons for this decrease are not clear, but declines in the proportion of people with unpaid caregivers could be one cause, if unpaid caregivers provided more hours of assistance, on average, than did paid caregivers.

Sources of Paid Care
The proportion of disabled elderly persons who received help from paid caregivers increased, on average, from one quarter in 1982 to more than one third in 1994.

Increased participation by most payment sources
Information on how frequently each payment source was mentioned by disabled persons with paid helpers in 1982, 1989, and 1994 is provided in Table 4 for specific types of help (e.g., nursing and ADL assistance). For any type of home care assistance, the most common source of payment was the disabled person; 57% of persons with paid care in 1994 helped pay for that care. Table 4 also shows that disabled persons' participation in paying for their own care increased between 1982 and 1989 for each type of assistance. The greatest increase was for ADL help (45% to 53%). Between 1989 and 1994, however, levels of payment by disabled persons decreased slightly for ADL and IADL helpers but increased from 36% to 44% for nursing helpers.

Between 1989 and 1994, the proportion of disabled persons receiving care paid for by Medicare continued to increase, but the proportion receiving care paid for by Medicaid decreased. Medicare coverage for nursing helpers leveled off during this period, but there was a large increase in Medicare coverage for ADL and IADL helpers. This is consistent with the changes seen in Medicare home health care use, that is, there have been more visits per person and more visits by aides who perform ADL and IADL services. In 1994 the proportion of disabled persons receiving Medicaid assistance for any helper fell to 8.9%—slightly below the 1982 level of 9%. The largest reduction was in paying for nursing helpers, from 24% in 1989 to 10% in 1994.

Other sources were proportionally less often used to pay for home care in 1989 than in 1982, although the decline in the participation rate of this source was greatest in the case of ADL and IADL assistance, as opposed to nursing care. From 1989 to 1994, the use of other sources increased for ADL and IADL helpers and decreased slightly for nursing helpers. We included, in other sources, cases in which paid care was indicated but no source was mentioned. The payment sources most likely not known by the disabled elderly persons receiving paid care were public programs, such as SSBG or Older Americans Act grants. Table 4 shows that the role of private insurance was small and virtually unchanged between 1982 and 1994.

Trend shifts toward reliance on program sources
We combined payment sources in Table 5 to differentiate personal, out-of-pocket sources (i.e., disabled person, family, and friends) and program payers (i.e., Medicare, Medicaid, private insurance, and other). Between 1982 and 1989, the proportion of persons with only personal sources increased, on average, from 44% to 51%, whereas those with only program payment sources decreased from 44% to 36%. Between 1989 and 1994, the trend reversed, with higher proportions of persons using only program payment sources and lower proportions using only personal sources. The proportion of persons using both personal and program sources of payment between 1982 and 1994 increased slightly, from 11% to 14%.

Paid helper hours
Table 6 presents the number of paid worker hours in a week received by persons with such helpers in 1989 and 1994 with the number of hours paid by personal out-of-pocket and program sources. On average, persons with any paid helpers used 15.2 h of paid help in a week in 1989 and 12.6 h in 1994. Among disabled persons who had only personal sources of paid help, the average was 13.8 h in 1989 and 13.1 h in 1994. Among persons with only program-related sources of payment, the number of hours declined, on average, from 14.1 h in 1989 to 9.7 h in 1994. People who received paid help financed by both personal and program sources had the highest number of hours of help, but the average declined from 24.0 h in 1989 to 19.5 h in 1994.

Overall, the trend between 1989 and 1994 was toward fewer paid hours per week, regardless of ADL levels. Reductions in paid hours were most dramatic in only program sources and the combination of personal and program sources. This is consistent with shifts in sources of program-sponsored payment to Medicare, with its skilled care requirements, from Medicaid and other program sources oriented toward extended durations of home care.

In sum, disabled persons with lower levels of ADL or IADL dependencies paid for home care themselves. With increasing dependency, other sources—Medicare, Medicaid, or insurance—played a more important role, either as the sole source or combined with personal sources. This was observed for 1982 and 1989. The period through 1994 suggests a different trend. Medicare use continued to rise; Medicaid coverage decreased.

Out-of-Pocket Payments by Disabled Elderly Persons
Although the 1982, 1989, and 1994 NLTCS measured changes in payment sources, survey data were not available on the payments from each source. Data were collected in the NLTCS only on the payments made by disabled persons for home-based LTC. Because this information was not provided by all respondents, the data may not represent all such payments. From the 1989 NLTCS, 80% of sample persons with out-of-pocket payments provided a dollar amount. Nevertheless, the data provide insight on the distribution of out-of-pocket payments made by disabled persons.

Out-of-pocket payments and ADL status
Table 7 presents data on out-of-pocket payments made by disabled persons. The top panel shows that an average of $259 (adjusted for Consumer Price Index in 1994) was spent in a month by all persons with out-of-pocket expenses in 1982. As expected, out-of-pocket payments increased with ADL dependency, from $128 for persons with IADL or one ADL dependency to $544 for persons with three or more ADLs. Table 7 also presents the payment at selected percentile levels for disability groups. For example, half of the persons with three or more ADLs paid $184 or more in a month (50th percentile), whereas 10% paid $1,227 or more in a month (90th percentile).

Table 7 suggests that (a) virtually no change occurred in out-of-pocket expenses incurred by persons with little ADL dependency (i.e., IADL or one ADL) and (b) among persons with high levels of ADL dependency, some increase in out-of-pocket expenses occurred among those spending the most. For example, persons with three or more ADLs who paid the most out of pocket (i.e., the 90th percentile level) paid more in 1994 than in 1989 ($1,800 vs $1,425).

Because the NLTCS elicited out-of-pocket expenses for a reference month, data in Table 7 must be annualized. Thus, persons with any out-of-pocket expenses would have spent $3,000 a year, and persons with three or more ADLs would have spent $6,900 for home care.

Out-of-pocket payments and personal characteristics
Table 8 presents out-of-pocket payments in 1989 and 1994 for subgroups of the disabled elderly persons by personal characteristics expected to be associated with higher than average expenses for out-of-pocket home-based care. Persons with out-of-pocket payments were sorted into three ADL categories. A review of the group with three or more ADLs shows, compared with the overall 1994 average of $576 of out-of-pocket expenses in a month, persons aged 75 and older spent $631 a month. Unmarried individuals spent $756. This is consistent with such persons not having informal assistance from a spouse, who would generally be an important caregiver. For a similar reason, persons living alone had higher out-of-pocket expenses than the average disabled person with three or more ADLs.

	Discussion

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The projected growth of the U.S. elderly and oldest-old populations when baby boom cohorts reach older ages foreshadows increasing LTC demand. Our finding, and its replication in other surveys, that disability rates among elderly persons declined in recent years suggests that future LTC demand may be much less than it would be otherwise. It will be important, however, to closely monitor future changes in disability prevalence.

Along with recent declines in disability rates, we identified recent changes in the sources and amounts of home care received by the disabled elderly population. Such patterns are important because they indicate how use of currently available public and private resources has been changing. Maintaining a disabled elderly person in his or her own home or other noninstitutional setting often requires a combination of payer sources to meet costs, in addition to the predominant presence of informal family caregiving. Focusing on 1989 and 1994, we identified four trends.

The proportion of disabled elderly persons who relied on only paid or only informal helpers declined between 1989 and 1994. The proportion of those using both sources increased. Increases in the proportion of people relying on both sources of care were large among disabled persons with the highest levels of ADL dependencies (i.e., five ADLs). Changes in family demographics, increasing opportunity costs of informal caregivers, and increasingly more complex clinical profiles of disabled elderly persons in the community might explain this trend. For example, competing needs of informal caregivers, who tend to be women, and the increasing role of women in the economic workplace may account for some of the increase in reliance on combined use of both informal and paid caregivers. Consistent with this notion, a study of New York City Medicaid home care users found the vast majority of family caregivers are female and children of the home care recipients. Approximately 40% are employed full time (Hokenstad et al. 1998).

Despite the increased use of paid sources, our analysis did not indicate a diminished role of informal caregivers. Other studies have indicated that informal care continues to be an important source of care, even for people eligible for program services. For example, individuals with families who contribute to their care received about 40% of their total assistance (Medicaid home care plus family care) from family members.

Second, between 1989 and 1994 Medicare home care coverage increased, and Medicaid coverage declined. Medicare coverage of nursing helpers leveled off, but Medicare coverage for ADL and IADL helpers increased. This is consistent with Medicare home health use changes—more visits per person and more visits by aides who perform ADL or IADL services. It is also consistent with the rapid expansion in Medicare home health spending after 1989 that resulted from a liberalization of coverage guidelines (Scanlon 1997).

Coverage by Medicaid might have declined during this period because of states' increased interest in maximizing Medicare financing for services that might otherwise have been paid by Medicaid. Several studies have found that Medicare and Medicaid expenditures were inversely related (Cohen and Tumlinson 1997; Kenney, Rajan and Soscia 1998). The 1997 Balanced Budget Act contained provisions intended to reduce Medicare home health spending. As the provisions take effect in coming years, it will be important to monitor the extent to which Medicaid responds to Medicare reductions, as well as to determine if the 1997 Balanced Budget Act provisions result in increased burdens for disabled elderly persons and their families.

Third, the number of hours of home care per week, either in terms of combined paid and informal care or of only paid care, declined between 1989 and 1994. This applied to all persons regardless of their ADL or IADL dependency. Although we do not have a clear explanation for this trend, one possibility might be the increasing availability and use of technical and mechanical aides, such as personal emergency response systems, microwave ovens, and grab bars. Reductions in paid helper hours per week might have been due to the shift in reliance on financing from Medicaid, which is more LTC oriented, to Medicare, which limits coverage to conditions that require skilled care or supervision (e.g., Stewart et al. 1999).

Fourth, only small changes in out-of-pocket payments were observed, with the possible exception of the most disabled persons and those at the high end of the spending distribution, where out-of-pocket costs increased between 1989 and 1994. Despite the growth of Medicare home care, about 20% of the disabled elderly persons spent money out of pocket for home-based care to compensate for ADL and IADL dependencies. In 1994, for example, persons with three or more ADLs paid $576 a month. Persons with the highest out-of-pocket payments tended not only to have the most disability, but also to have other characteristics that made them vulnerable. Persons with three or more ADLs who lived alone or had been hospitalized in the preceding 12 months had higher than average out-of-pocket payments for home care.

In sum, in our descriptive analysis of trends in home care use between 1982 and 1994 we found changes in sources and amounts of care. Although the possibility or extent of substitution between sources was beyond the scope of our analysis, the findings do suggest that coverage by different sources is fluid and changes can occur in relatively short periods of time. These results further suggest that changes in the policies of one program could impact significantly the importance of that program (e.g., Medicare) as well as those of other funding sources (e.g., Medicaid). On the other hand, our findings do provide continuing support to the importance of focusing home care support on the most severely disabled elderly persons. They are the most likely to use paid services, to use the most hours of paid care, and to pay the most money out of pocket for such care. The most severely disabled elderly persons and their families are also most likely to be negatively impacted by contractions in publicly supported home care, as envisioned in the 1997 Balanced Budget Act provisions to constrain Medicare spending for home health.

In conclusion, our findings indicate the continuing importance of home care services for disabled older persons. As the number and proportion of older Americans increase in the coming decades, policy discussions addressing expansion of publicly financed home care services are also likely to increase. The way in which home care services will be expanded and the magnitude of potential expansions will reflect philosophical, political, and budgetary considerations. Given the continuing concern that the popularity of home care services will induce "woodwork effects," any proposed expansion in services will likely be accompanied by rules constraining eligibility, coverage, and reimbursements. In this regard, current policies governing Medicaid's home care services and ongoing debate on the management of Medicare's home health benefit will provide important guidance for those designing future program features.

	Acknowledgments

 
Research presented in this article was supported by the National Institute on Aging (NIA). Inferences and conclusions drawn are solely those of the authors and do not necessarily reflect the views of the Urban Institute, Duke University, or NIA.

Received for publication August 3, 1999. Accepted for publication February 18, 2000.

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