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7 Long-term Care INTRODUCTION People with long-term health problems are a large and increasing proportion of the population of the United States. The elderly are not the only users and potential clients of Tong-term care. Such people are of all ages and include not only the chronically ill and the infirm but also the physically impaired, the mentally ill, and the mentally retarded. The long-term client tends to use multiple services, both formal and informal, at a time when his or her coping abilities may be increasingly limited because of functional impairment and disability (Murnaghan, 1976~. The client may or may not have family and friends to help with caretaking. Among the elderly there is often no one to fill this role. The needs of the client range from those that are solely medical to those that are basically social. Limited efforts are being made to combine the resources of the medical care and social service systems in support of the Tong-term care client. At the same time, there is rising concern about the financial burden of Tong-term care. The number and complexity of client needs and the variety of institutions and agencies through which services are delivered create problems for the client, the caretaker (if there is one), and for policy makers who make decisions about the provision, use, and financing of long-term care. This chapter concentrates on data essential to policy decision making in the area of long-term care of the elderly. Selected policy questions include: 135
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136 AGING POPULATION IN THE TWENTY-FIRST CENTURY What is the appropriate mix of services to enable long-term clients to be maintained at their maximum levels of health and well-being? How can these needs be measured? What alternative services are required to prevent the need for high-cost institutional placement? What are their costs and benefits? Are they cost-effective? Can financial and other incentives be developed to deliver the vast array of needed long-term care services in the most efficient and effective way? How can these medical and social long-term care services be financed in an equitable manner? What are the respective roles and responsibilities of the fed- eral, state, and local governments, the community, private enterprise, and the individual in the delivery and financing of long-term care services? Can private insurance companies develop long-term care in- surance plans that cover nursing home care, home health services, and social support services at a reasonable cost? Can the disparate elements that constitute the long-term care financing and delivery systems be brought together to fashion a coherent set of national policies on this important issue? Policy issues in long-term care focus on four themes: the need for and use of long-term care; the determinants of such use; measures of need; and financing and reimbursement for long-term care. In a review of data needed to address these issues, certain key topics require priority attention: (1) how to define long-term care; (2) what data are required to understand and analyze the utilization of long-term care by the elderly; (3) how best to provide useful service statistics; and (4) how to collect, aggregate, and disseminate expenditure data. DEFINITIONS OF TONG-TERM CARE A major problem in assessing the magnitude of long-term care services and costs results from the lack of a common definition of long-term care in data collection and analysis. Both medical and nonmedical providers serve the long-term client. These providers may be public or private. Their services may be unique the delivery of hot meals only, for example or complex, as those provided in nursing homes or chronic disease hospitals. For many providers,
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LONG-TERM CARE 137 their data systems, when such do exist, tend to be fragmented and incomplete. Two definitions of long-term care are given here. The first is that used by the Health Care Financing Administration, the major federal agency dealing with payments for long-term care of the elderly; the second is that used in the Long-Term Health Care Minimum Data Set developed by the United States Committee on Vital and Health Statistics. Doty, Liu, and Weiner (1985), in an article in the Health Care Financing Review, state that "Long-term care (LTC) refers to health, social, and residential services provided to chronically disabled persons over an extended period of time. They go on to say, "the need for long-term care ~ not necessarily identified with particular diagnoses, but rather physical or mental disabilities that impair functioning in activities necessary for daily living" (Doty et al., 1985:69~. In the introduction to the Long-Term Health Care Minimum Data Set, there is an expansion of the definition of long- term care: "Long term health care refers to the professional or personal services required on a recurring or continuous basis by an individual because of chronic or permanent physical or mental impairment. These services may be provided in a variety of settings including the client's own home" (U.S. Department of Health and Human Services, 1980b:31~. Each of the two definitions given above emphasizes two aspects of long-term care. First, it is care given over an extended period, and, second, the recipient of such care has lost some capacity for self- care due to chronic illness or condition, either physical or mental. Cure may not be a realistic goal in long-term care. The objectives of long-term care are to help persons to cope with their disabilities, to decrease their dependence on others, and to narrow the gap between their actual and potential function (U.S. Department of Health and Human Services, 1980b). The Minimum Data Set definition points out, in addition, that such care may be given in the person's own home. Family and community support may be as important to the person as medical care. Essential to policy analysis is a common definition of long-term care. The ideal record system for long-term care should be capable of monitoring all necessary data on a person throughout the course of an illness regardless of where the care is received. The possibility of achieving such a record tracking system in the United States is unlikely. However, to the extent that all providers of care identify the care recipient in the same way and employ the same scales and
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138 AGING POPULATION IN THE TWENTY-FIRST CENTURY classifications, their records can be assembled to answer questions as to client characteristics, long-term care usage, and the extent and nature of such service in relation to the intensity of care needed by the client. Recommendation 7.1: The pane] recommends that the Na- tional Comrn~ttee on Vital and Health Statistics develop a standard definition of long-term care for use by governmen- tal and private programs emphasizing that it Is care given over an extended time period and that the recipient of such care has lost some capacity for self-care. UTILIZATION OF LONG-TERM CARE SERVICES BY THE ELDERLY Service statistics and financial records may answer the question of who among the elderly uses long-term care. Unanswered, how- ever, is the question of why some persons use long-term care services and others do not. The concept of functional disability has been developed in an attempt to describe the long-term care client. The elderly person's functional status is seen as an indicator of the ser- vices needed from the community. Diagnostic measures undertaken to determine appropriate levels of care have implications for resource allocation (German, 1981~. The path by which persons become clients of long-term care services is less clearly understood. To trace this path through time is the goal of longitudinal studies. Improvement of the concept of functional disability and the introduction of longi- tudinal studies of the elderly will aid in understanding the utilization of long-term care. Functional Disability The diagnostic description of a person is seldom an indicator of his or her need for or utilization of long-term care because diagnosis alone gives no clue to how well or how poorly an individual func- tions. As a result, descriptions of behavior, rather than conditions, are used to describe the long-term care population. People in need of Tong-term care are commonly described as functionally limited or functionally disabled, those persons with a chronic physical or mental condition that impairs them so that they require the help of another person in performing everyday activities (Van Nostrand,
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LONG-TERM CARE 139 1985a). What constitutes functional limitation or functional disabil- ity, however, is still undecided. The federal Interagency Statistical Committee on Long-Term Care of Elderly (1980), in its effort to develop a definition of functional limitations, divided such limita- tions into four areas: mobility and transportation, personal care limitations, housekeeping limitations, and self-management limita- tions (Interagency Statistical Committee on Long-Term Care of the Elderly, 1980~. In practice, however, most functional assessments of the elderly concentrate on only two areas: activities of daily living, which are personal care tasks, walking, bathing, dressing, eating, and toileting, and instrumental activities for daily living, which are selected tasks necessary for living independently in the community, such as shopping, preparing meals, doing househoic] chores, manag- ing money, using the telephone, and taking medicines (Van Nostrand, 1985b). Missing from commonly used scales of ADL and lADL is any measure of either the behavior problems or the cognitive impairments that are frequently the cause of admission to long-term facilities. An individual still may be able to function physically and even to prepare some meals, yet be unable to avoid dangerous behavior such as crossing the street against the light or leaving the gas flame turned on. In the same way, cognitive impairments that result in an inability to identify familiar people or places may cause elderly individuals to wander and to lose their way. The Long-Term Health Care Minimum Data Set points out the importance of measures of behavior problems and of memory impairment in functional assessments of the elderly and also indicates the need for some measure of mood disturbance. The discussion of this topic states: "A persistent disturbance of mood is much more common in those with chronic medical conditions than in those who are physically healthy" (U.S. Department of Health and Human Services, 1980b:14~. The addition of measures of cognitive, social, and emotional func- tioning, including behavior problems and mood disturbances, to the current scales of functional disability would enhance the usefulness of such scales (see Katz et al., 1985~. Including appropriate measures of these items in disability scales would improve the scales as predictive instruments both for the risk of institutionalization and for identify- ing heavy users of institutional services. Family members who may be able to deal with the physical problems of the elderly often find themselves unable to cope with behavior or cognitive problems or depression, turning to institutional care for their elderly relatives. A
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140 AGING POPULATION IN THE TWENTY-FIRST CENTURY scale of functional disability enriched to include psychological and mental measures also would help to identify the heavy users of in- stitutional services, since residents with such problems often require more care than those with chronic physical ailments only. A devel- opmental phase would clearly be needed to resolve methodological issues In selecting effective measures. With the aging of the pow ulation, these problems assume increasing importance from many standpoints, including resource requirements, both public and pri- vate, and effects on family. While a standard set of measures poses methodological problems and has some cost consequences, the need is great. For example, the projected number of cases of severe demen- tia in the United States in the year 2000 is over 2 million (Cross and Guriand, 1986~. In a study of Alzheimer's disease and other demen- tias the Office of Technology Assessment (1987) concluded that the exact costs of this type of illness to the nation cannot be calculated due to the paucity of relevant information, but it is clear that the annual cost is in billions of dollars. Recommendation 7.2: The pane] recommends that the cur- rent national measures of functional disability be expanded by adding measures of cognitive, social, and emotional func- tioning, including behavior problems and mood disturbances, so that comparable information may be gathered from com- munity and institutional populations. The use of such measures would appear to be most relevant for supplements on aging in the NHIS, longitudinal studies on aging, and surveys of patients in nursing homes and other institutions. Longitudinal Studies Long-term care, by definition, is care over an extended time period. There are changes with time in the degree of impairment of older persons. Not all such changes are In a negative direction; people do unprove as well as decline (Busse and Maddox, 1985). Residents are discharged from institutions not only to hospitals or to the funeral home but also to their own homes or to other community living arrangements. Aging is a process, and the transition points from health to disease need to be deterrn~ned in both individuals and age cohorts. To project need for long-term care, data are required over a relatively long period (five or ten years) on the characteristics of the elderly population, their use of services, and the nature of
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LONG-TERM CARE 141 their support system and changes in this system, both formal and informal. Longitudinal studies of older persons must include both the well and the impaired in the community. The risk factors that may lead to institutionalization can be determined only through panel studies of both these groups, not by the descriptions and analyses of those persons admitted for institutional care, although such analyses may be useful for other purposes. Standardized definitions should be employed in describing community services and service providers, including the services given in the person's home. Selected questions similar in content to those used in community studies should be used in longitudinal studies in institutions. Topics that need to be addressed include changes in health status, the outcome of care, and the costs of such care. Information on these topics from both the community elderly and those in institutions would make possible comparisons of the cost of care in different environments for elderly persons with comparable levels of disability. Modifications and development of existing federal surveys could be used to develop the necessary data for studies of changes in health status and service utilization of the elderly over time. The 1982 and 1984 National Long-Term Care Surveys conducted by the Health Care Financing Administration and the Office of the Assistant Sec- retary of Health and the 1984 Supplement on Aging/National Health Interview Survey conducted by the National Center for Health Statis- tics are useful models for the development of longitudinal surveys of the aged in the community. The National Long-Term Care Surveys collected data on persons age 65 and older who were functionally disabled and living in the community. The sample was identified by telephone screening of persons in the Medicare health insurance enrollment file. Information was collected on degree of disability in cognitive functioning, the informal support system, the use of med- ical services, insurance coverage, and income. The 1982 Long-Term Care Survey also collected data about informal support given to el- derly people. The 1984 survey was a follow-up of the 1982 survey, excluding the survey of informal supports but adding a sample of unimpaired people. A follow-up of the full 1984 sample, planned for 1988, should provide useful longitudinal information. The data for the disabled will be of particular interest since they will be data for a third point in time. The 1984 Supple~nent on Aging of the National Health Interview Survey collected data on a sample of 8,000 persons age 55 and over in
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142 AGING POPULATION IN THE TWENTY-FIRST CENTURY the community. In addition to information on health status and hos- pital and physician care, this survey collected information on income, housing, informal support, and the use of social services. A Social Security number was secured for each respondent to provide a future link with the National Death Index, so that cause of death could be linked with previously collected information (Van Nostrand, 1985a). With the cooperation of and funding from the National Institute on Aging, persons who were age 70 and over in 1984 were reinterviewed in 1987. The usefulness of these materials for longitudinal analysis would be greatly enhanced if data were collected for all persons in the 1984 survey, beginning with those age 55 and older. Recommendation 7.3: The panel recommends that the Na- tional Center on Health Statistics continue to collect, every two years, health and other relevant information (hospital and physician care, income, housing, informal support, and the use of community services) from all persons age 55 and older in the original sample of persons in the 1984 Supple- ment on Aging of the National Health Interview Survey, now known as the Longitudinal Study on Aging. The National Nursing Home Survey conducted by the National Center for Health Statistics in 1977 and 1985 is a useful model for longitudinal surveys of the institutional elderly. These surveys collected data on the characteristics of the nursing home, its costs, and its stag:, as well as on the characteristics of both current residents and discharged patients. For the 1985 survey, the center is conducting a follow-up of residents and discharged patients. Information collected for both current residents and discharged patients includes functional disability, chronic conditions, services received, charges for care, and sources of payment. Data on dis- charges includes the duration of stay and its outcome. The 1985 survey also collected data from next of kin of both residents and discharged patients on functional disability at time of admission, caregiver stress, and the family's view of the reasons for admission. Items on functional disability ~ both surveys were structured so that they were sirn~lar to data on functional disability in community samples. Like the 1984 SOA/NHIS, the 1985 NNHS collected Social Security numbers for matching to the National Death Index (Van Nostrand, 1985b). Recommendation 7.4: The pane] recommends that the Na- tional Nursing Home Survey (a) be conducted on a 3-5 year
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LONG-TERM CARE cycle, (b) be expanded to include all types of long-term care institutions (i.e., chronic disease hospitals, mental health facilities, rehabilitation centers, board and care homes, psy- chiatric halfway houses, and residential facilities), and (c) that a subsample of admission cohorts in the 1985 survey serve as a panel for a longitudinal study of institutionalized persons and that the records of the subsample be linked with Medicare files. 143 Other important longitudinal surveys are the NHANES Epidemi- ologic Follow-up Survey, discussed in Chapter 3, and the EPESE study, discussed in Chapter 1. SERVICE STATISTICS Long-term care services include a broad continuum of health care, social services, and residential care. These services are provided in settings that are either institution- or community-based. All of these service providers collect some statistical data for administrative bodies federal, state, and local. The conflicting and overlapping de- mands on providers of services by funding and regulatory agencies are a serious burden to limited staff. Evaluation of aspects of care in different settings can scarcely be accomplished without special stud- ies (Murnaghan, 1976~. The collection of uniform or standard data relating to long-term care by service agencies would yield comparable information on providers of care, services given, and the character- istics of the long-term care population. Special problems relevant to the collection of service statistics are considered here. Providers of Care Long-term care for the elderly is delivered in health facilities such as nursing homes, chronic disease hospitals, mental health fa- cilities, and rehabilitation centers; in housing with support services, such as board and care homes, life-care communities, psychiatric halfway houses, and residential facilities; by home-health and other agencies in the client's own home; and by social service agencies pro- viding adult day care, income maintenance, home-delivered meals, and transportation, among other services. Inventories are available of nursing homes, psychiatric facilities, and Medicare- or Medicaid- certified providers. There are no comprehensive inventories of cur- rently unlisted health and social facilities such as board and care
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144 AGING POPULATION IN THE TWENTY-FIRST CENTURY homes and home health agencies. In order to manage or monitor health care and health-related services, agencies, and institutions, the definition of long-term care providers should be expanded to in- clude community services for the long-term client, both medical and nonmedical. Recommendation 7.5: The panel recommends that the Na- tional Master Facility Inventory compiled by the National Center for Health Statistics from census data and state records be expanded to cover all health and social facilities providing long-term care. In addition to providers currently listed, the expansion would include board and care homes, home health agencies, and adult day-care centers. There has been an enormous expansion in residential facilities for the elderly, many of which provide long-term care and support services. Such residential facilities include retirement homes, shared living arrangements, board and care homes, and others. A sampling frame is needed for the study of such facilities; this would entail the development of definitions that distinguish among the various types of housing providing support services and between housing and health care institutions as defined by the National Master Facility Inventory (NMFI). The decennial census is an important resource in this area. The Bureau of the Census included a question that separately identified board and care facilities and the types of care they provide in the national content pretest, which will be used to develop the final content of the 1990 census. Board and care housing was defined as the provision by a nonrelative of food, shelter, and some degree of protective oversight or personal care that is generally nonmedical in nature. Because the quality of the pretest data from the board and care housing question could not be determined, the question will not be included in the 1990 census. The response burden of the board and care question is so large that it is unlikely that it would be included in any census. With the goal of developing a nationwide list of board and care facilities, the Bureau of the Census and the Department of Health and Human Services should be encouraged to explore ways to identify such facilities by building on the 1990 census. One approach would be to do a follow-up study of households with three or more unrelated adults in the 1990 census.
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LONG-TERM CARE 145 Types of Care A standard classification of the types of care given by long- term providers is essential. Only in this way can data be made available to evaluate the quality and effectiveness of services provided in different environments and by various health care professionals. A classification of a broad range of services is given in the Long- Term Health Care Minimum Data Set. This classification, or some modification of it, can be used for reporting purposes by different types of providers who are giving the same or similar care to the elderly. Recommendation 7.6: The pane] recommends that the Na- tional Committee on Vital and Health Statistics evaluate and, if necessary, revise the Long-Term Health Care Mini- mum Data Set's classification of types of services given by providers of long-term care. Informal Supports National surveys medicate that there are twice as many elderly persons bedfast and housebound at home as there are in institutions of all kinds (Shanas, 1982~. These long-term patients living at home are given care by family, friends, and neighbors as well as by mem- bers of formally organized service organizations. The care given by family, friends, and neighbors is usually described as informal sup- port. There is need for standard definitions of informal and formal support. Is care given in the household by a practical nurse who is not affiliated with an organization but whose salary is paid by a family member informal support? Definitions of informal support need to distinguish between support given by family members both inside and outside the household, and that given by household mem- bers whether or not relatives of the recipient. These distinctions may wed be significant in terms of the stability and intensity of support received by the elderly. A particularly vulnerable group are elderly people living alone. The lack of clear definitions in types of informal support creates ambiguities and leads to misinterpretation of data. More information is needed about the providers of informal care. The spouse and children of the elderly person are the major caregivers of functionally limited old people at home. There is no clear marker for when, and at what point, the providers of informal care call on formal support as either a care supplement or as a replacement of
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146 AGING POPULATION IN THE TWENTY-FIRST CENTURY their services. Are the people taken care of through informal support less impaired than those receiving formal support? Can one type of caregiver replace another? The relationship between the giving of informal care and the degree of impairment of the recipient needs investigation. The need for this type of information was recognized in planning the 1982 National Long-Term Care Survey, which included a special component on caregivers who provide assistance to the elderly with the activities of daily living. Data were collected on the characteris- tics of the caregiver, including assistance provided, associated stress, and opportunity costs (i.e., the cost to the caregiver of opportuni- ties foregone because of time spent in providing care.) The cross- sectional data from this survey and the 1984 Supplement on Aging of the National Health Interview Study both have provided important information about informal support (Van Nostrand, 1985a). How- ever, changes are needed to meet requirements for data on caretakers for future development of policies on services for the elderly. Recommendation 7.7: The pane! recommends that (a) the National Committee on Vital and Health Statistics develop a standard definition of informal supports that distinguishes between family members and nonfam~ly members (i.e., friends and neighbors) and identifies whether the helping individual lives in the same household as the care recipient and (b) that information on caretakers be an integral part of cross-sectional surveys and longitudinal studies of the elderly in the community. In addition, information is needed about the availability of the informal caretakers of the elderly currently and in the future. Most family caretakers, spouses or adult children, are women. Adult fe- male children of the elderly are likely to be less available as caretakers in the future as a result of changes in family size, increasing employ- ment among middIe-aged women, and physical distance from elderly parents. Models have been proposed for forecasting the informal support networks of the future elderly that address demographic variables (i.e., marriages, births, divorces, labor force participation) and relate these to health status and disability of the elderly (Manton and Soldo, 1985; Myers, 1985~.
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LONG-TERM CARE STANDARDIZATION OF MINIMUM DATA SETS 147 The Long-Term Health Care Minimum Data Set developed by the National Committee on Vital and Health Statistics includes data items about clients, services, and costs. The data set defines the central core of information about the long-term care client needed on a routine basis by most users and establishes standard measure- ments, definitions, and classifications for this core (U.S. Department of Health and Human Services, 1980b). Work on the data set began at a conference in 1975 in which a representative, multidisciplinary group of providers and users of information on long-term care dis- cussed the characteristics of such care, the data requirements of different users, and methods of measurement, and data collection and presentation. The appointment of a Technical Consultant Pane! on Long-Term Care followed this conference. Representatives from virtually all government agencies and bureaus concerned with long- term care, as well as a number of outside experts, participated in the work of the panel. The data set was circulated in draft form for comment to a large group of potential users and interested organizations including plan- ning agencies, state officials, third-party payers, and professional or- ganizations (U.S. Department of Health and Human Services, 1980b). In final form the data set was also evaluated by a representative group of users. It has been adapted for use in the extended care program of the Veterans Administration. Surveys and administrative records in long-term care need uni- form definitions of the same topic. Without such definitions, data gathered by one source cannot be compared or aggregated with data gathered by another. The data set, as developed, peanuts flexibil- ity in health information systems without the loss of the ability to make basic comparisons. General use of the data set would open the door to developing comparable information from different sources on the providers of care, services given, and health status and demo- graphic characteristics of the service recipient. Potential applications of the data set include: (1) management or monitoring of health and health-related services, agencies and institutions, (2) management of care of patients and service clients, and (3) allocation of resources to agencies and programs. The Long-Term Health Care Minimum Data Set is currently undergoing the usual Department of Health and Human Services administrative and policy review process prior to implementation.
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148 AGING POPULATION IN THE TWENTY-FIRST CENTURY Recommendation 7.8: The panel recommends the use of the Long-Term Health Care Minimum Data Set by the Health Care Financing Administration, the National Center for Health Statistics, the Bureau of the Census, and other federal agencies in appropriate long-term care administra- tive, survey, and research data collection activities. The data set should be periodically reviewed by the National Committee on Vital and Health Statistics in light of changes in health delivery systems and public policy. For example, nursing homes could incorporate the data set in their administrative records (the Veterans Administration is already do- ing so), the Health Care Financing Administration could include a requirement for use of the data set when they issue requests for research proposals on long-term care, and the National Center for Health Statistics could adopt the data set in the LSOA and the NNHS. EXPENDITURE DATA ON [ONG-TERM CARE With the projected growth of the older population, particularly of the very old among them, the demand for long-term care may be expected to increase. National expenditures for long-term care may also be expected to increase. Most of the national expenditures for long-term care are for nursing home or institutional care, although expenditures for noninstitutional care also have increased rapidly (Doty et al., 1985~. Estimates of nursing home care are part of the National Health Expenditure series, which was initiated in the Department of Health, Education, and Welfare and ~ currently prepared and published each fall by the Health Care Financing Administration. Most of this care is provided to elderly people. In 1985, $35.2 billion, almost 1 percent of the gross national producet, went for nursing home care (Waldo et al., 1986~. Only $0.6 billion of this amount came from Medicare funds (the Veterans' Administration paid a similar amount, $0.7 billion). Patients and their families accounted for $18.1 billion (private insurance and other private funds for $0.6 billion); Medicaid paid $14.7 billion. Home health care is a growing segment of the health care delivery system. Expenditures for these services are not broken out separately in the National Health Expenditure series but are included under "other professional services along with services such as podiatric
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LONG-TERM CAM 149 care (Van Nostrand, 1985b). Nevertheless, Medicare spending for home health care is estimated to have grown from $60 million in 1968 to $2.3 billion in 1985 (Waldo et al., 1986~. Additional long-term care services for the elderly are not re- ported in the National Health Expenditure series. Among such services are the costs of social services funded by states through social service block grants, and services funded through the Older Americans Act and other federal programs. The National Medi- cal Expenditure Survey planned for 1987 wiD collect information on health status of individuals, their medical cost expenditures, and the source of payment for the civilian population as well as for the population in nursing homes, psychiatric hospitals, and facilities for the mentally retarded. The aggregation of these data from both households and institutions will provide an overview of expenditures for long-term care. These data, together with the data reported un- der public programs, will provide a basis for the development of an ongoing series on expenditures for long-term care, which accounts for a large and growing proportion of public and private health care expenditures. These data are essential for estimating the costs of alternative policies for the provision of long-term care. Recommendation 7.9: The pane! recommends that aggre- gate national expenditure data for long-term care of the elderly, including expenditures for both health and social services, be prepared and disseminated by the Health Care Financing Administration using as a mode! the National Health Accounts.
Representative terms from entire chapter: