2

Profile of Long-Term Care

Long-term care covers a diverse array of services provided over a sustained period of time to people of all ages with chronic conditions and functional limitations. Their needs for care range from minimal personal assistance with basic activities of everyday life to virtually total care. Those needs are met in a variety of care settings such as nursing homes, residential care facilities or people's homes. People follow various paths in long-term care, reflecting differences in their health and functional status, variations in individual and family preferences and values, economic circumstances, and geographic location. In combination, these factors shape both the options and resources available to people needing long-term care and the ways in which they understand and evaluate their choices. Transitions in care occur not only because of changing care needs, but also because of changing family or financial circumstances and changing options or preferences for care. In some cases, regulatory policies, funding strategies, and provider capabilities, can require a person to move from one setting to another. Such transitions in care—voluntary or involuntary—can lead to difficulties that range from emotional to social, physical, and logistical.

This chapter presents a brief overview of the characteristics of the people using long-term care, the settings in which such care is provided, financing of the care, and coordination of care. As indicated in Chapter 1, learning about people who use long-term care and the various providers of care is complicated by the lack of comprehensive and systematic data across all long-term care settings and uniform definitions within settings.



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.

OCR for page 36
Improving the Quality of Long-Term Care 2 Profile of Long-Term Care Long-term care covers a diverse array of services provided over a sustained period of time to people of all ages with chronic conditions and functional limitations. Their needs for care range from minimal personal assistance with basic activities of everyday life to virtually total care. Those needs are met in a variety of care settings such as nursing homes, residential care facilities or people's homes. People follow various paths in long-term care, reflecting differences in their health and functional status, variations in individual and family preferences and values, economic circumstances, and geographic location. In combination, these factors shape both the options and resources available to people needing long-term care and the ways in which they understand and evaluate their choices. Transitions in care occur not only because of changing care needs, but also because of changing family or financial circumstances and changing options or preferences for care. In some cases, regulatory policies, funding strategies, and provider capabilities, can require a person to move from one setting to another. Such transitions in care—voluntary or involuntary—can lead to difficulties that range from emotional to social, physical, and logistical. This chapter presents a brief overview of the characteristics of the people using long-term care, the settings in which such care is provided, financing of the care, and coordination of care. As indicated in Chapter 1, learning about people who use long-term care and the various providers of care is complicated by the lack of comprehensive and systematic data across all long-term care settings and uniform definitions within settings.

OCR for page 36
Improving the Quality of Long-Term Care Although an effort has been made in this report to touch on all aspects of the long-term care landscape, not all possible users and providers of long-term care are addressed. The discussion often emphasizes the elderly and care in nursing homes. The information on providers and users of long-term care services in this chapter is based mostly on the periodic national surveys of nursing homes and home health and hospice care conducted by the National Center for Health Statistics (NCHS) and a few ad hoc studies of other providers such as board and care homes and assisted living facilities. It also draws heavily from the analysis of the characteristics of long-term care users by Spector and colleagues (1998) using data drawn from four principal data sources, with varying reference dates and sometimes varying definitions of terms such as disability.1 The data in their analysis rely on household surveys or surveys specifically of the elderly or of nursing home residents. Only one survey provides data on children using home and community-based services, and none includes people in state mental hospitals or in intermediate care facilities for people with mental retardation. Adler (1995) estimated that in 1990, approximately 12.7 million people living in the community including certain institutional settings (about 5 percent of the total population) had long-term care needs. Nearly 58 percent of those with long-term care needs were aged 65 or over, and almost 81 percent were living in the community rather than in institutions such as nursing homes. The population with long-term care needs represented about 30 percent of a larger population of 42.7 million people (17 percent of the total population) who had disabilities. Use of long-term care services may not always equate with need for such services. Some people who, by their own assessment or according to expert criteria, need long-term care services may be unable or unwilling to obtain care, even informal care from family members. Others who use formal long-term care services may not have functional limitations. For example, one national survey reported about 3 percent of nursing home residents needed no assistance with activities of daily living (ADLs) (Krauss and Altman, 1998). These residents, however, may have clinically complex conditions that require daily nursing care and monitoring. Even though different long-term care settings tend to emphasize different types of care, they commonly serve mixed populations with 1   Much of the analysis was taken from the background paper commissioned from Spector, Fleishman, Pezzin, and Spillman for use by the Institute of Medicine committee. The principal data sources for this analysis are the 1994 Disability Supplement to the National Health Interview Survey, the National Long-Term Care Survey, the Assets and Health Dynamics of the Elderly Survey, and the nursing home component of the Medical Expenditure Panel Survey.

OCR for page 36
Improving the Quality of Long-Term Care overlapping characteristics. Moreover, states differ in their regulations regarding “appropriate” residential care settings for people with specific characteristics and care needs. For example, some state policies allow assisted living facilities to serve people who meet the criteria for nursing home admission, whereas other states explicitly prohibit the admission or retention of such individuals in these settings (Mollica, 1996, 1998). Thus, the characteristics of the assisted living populations may vary across states, depending on such admissions policies. Unfortunately, no single comprehensive source of data exists on the various settings and the users of long-term care. CHARACTERISTICS OF LONG-TERM CARE USERS Adults Of the approximately 190 million people aged 18 or over in 1994, nearly 9 million were using formal and informal long-term care (Spector et al., 1998). Of these, 6.5 million were over age 65. Between 1984 and 1994, the number of persons 65 years and older using formal and informal long-term care remained about the same, but the percentage of this age group using long-term care dropped from 19.7 to 16.7 (Spector et al., 1998). The proportion of long-term care users who reported using only informal care dropped from 51 percent in 1984 to 40 percent in 1994, while the proportion who reported using institutional care increased from approximately 26 percent to 30 percent during the same period. Elderly people using long-term care in 1994 were older than in 1984 (mean age up from 79.2 to 80.5 years) and more likely to be women, to be cognitively impaired, and to have a greater number of ADL limitations. Table 2.1 summarizes the demographic characteristics and levels of functional limitations of elderly and nonelderly users of long-term care in nursing homes and community-based settings, broadly defined to include both formal and informal services. Ninety-one percent of those using nursing home services are elderly; the vast majority of long-term care users are women, but among the small number of nonelderly nursing home residents, the proportion of men and women is nearly equal. In both age groups, nursing home residents are, on average, older than those using community-based services and also more disabled, as reflected in the substantially higher proportion needing assistance with three or more ADLs. Even among the older population, almost half of those using community-based long-term care services required assistance only with instrumental activities of daily living (IADLs). For persons living in the community, the types of conditions that create a need for long-term care are different for younger and for older

OCR for page 36
Improving the Quality of Long-Term Care TABLE 2.1 Demographic Characteristics of Long-Term Care Users Aged 18–64 and Aged 65 and Older Living in the Community and in Nursing Homes: United States, 1994 and 1996   Community-Based Users (1994) Nursing Home Users (1996) Characteristics of Users 18–64 65 and Older 18–64 65 and Older   Number (000) Population (thousands) 3,363 3,823 138 1,425   Years Mean age (years) 44.5 79.1 51.0 84.6   Percent Gender Female 57.6 67.3 51.0 73.9 Male 42.4 32.7 49.0 26.1 Race White 77.0 86.4 76.1 89.9 Black 19.0 11.6 19.2 7.9 Other 4.0 2.0 4.7 2.2 Marital status Married 47.3 37.2 16.4 16.7 Never married 29.2 4.2 27.0 11.3 Divorced 18.4 6.6 46.3 7.5 Widowed or separated 4.8 51.8 10.3 64.5 Education Less than 12 years 34.3 51.5 42.9 43.6 12 years 39.4 27.5 23.8 18.9 Greater than 12 years 23.5 17.4 16.9 15.6 Missing 2.7 3.7 16.4 21.9 Level of IADL and ADL Disabilitya IADL Only 55.9 49.4 7.7 2.1 1–2 ADLs 26.7 29.0 14.5 13.9 3–6 ADLs 17.4 21.7 75.5 83.2 NOTE: Data from the 1994 Disability Supplement to the National Health Interview Survey (community-based users) and from the 1996 Medical Expenditures Panel Survey—Nursing Home Components (nursing home users). Except as indicated, entries are percentages. Missing data are indicated only if they represent more than 2% of cases. aADLs are defined as activities necessary for personal care, including eating, dressing, bathing, transferring (e.g., from bed to chair), and using the toilet. IADLs describe activities necessary to live independently in the community, such as doing light housework, managing money, shopping for groceries, using the telephone, preparing meals, and taking medications. SOURCE: Adapted from Spector et al., 1998.

OCR for page 36
Improving the Quality of Long-Term Care adults. Among those aged 18 to 64, the most common conditions cited in one analysis were back problems, mental retardation, mental illness, coronary heart disease, and respiratory conditions; among those aged 65 and over, the leading conditions were arthritis, coronary heart disease, visual impairments, stroke, and respiratory conditions (Adler, 1995). For nursing home residents, dementia was the most common health condition (Krauss and Altman, 1998). Children and Adolescents Among the small number of children with severe disabilities requiring long-term care, about 45 percent have major developmental problems (primarily mental retardation), 35 percent have severe physical limitations, and 20 percent have primarily mental health problems (SSA, 1999). The physical conditions include major lung diseases such as cystic fibrosis and severe asthma, severe arthritis, and childhood cancers; major development problems include mental retardation and other developmental disorders, and mental illness (Hobbs et al., 1985). Some conditions necessitate lifelong care, but others may require special care only during childhood. For example, children born prematurely who survive their experience in newborn intensive care units may have long-term central nervous system or lung disease that often requires home and community-based services for a few years, but with time and good growth, these needs may largely disappear for some children. Reports based on national long-term care surveys typically do not include data on long-term care users under age 18 because the numbers are so small and because definitions of disability for children differ from those for adults. The definitions for children reflect their developmental status and usually focus on limitations in play and school activities. Depending on the assumptions made about existing data from surveys and other sources, estimates of children potentially needing long-term care vary greatly. On the conservative side, the 1990 census reported that about 0.1 percent of children in the United States (approximately 92,000) were in long-term care institutions (Newacheck et al., 1998). Data from other sources produced estimates of another 170,000 children with long-term care needs who were living in the community in 1990 (Adler, 1995). On the high side, the 1994 National Health Interview Survey—Disability Supplement (NHIS-D) estimated that 18 percent of children (more than 12.6 million) had “a chronic physical, developmental, behavioral, or emotional condition and required health and related services of a type or amount beyond that required by children generally” (Newacheck et al., 1998, p. 117).

OCR for page 36
Improving the Quality of Long-Term Care PROVIDERS OF LONG-TERM CARE The question, Who provides long-term care? can be addressed in several ways, for example, by distinguishing between formal and informal caregivers, professional and paraprofessional workers, employees and independent contractors, and organized providers and individual workers. Organized providers include residential institutions and long-term care facilities (such as nursing homes and residential care facilities), as well as nonresidential service providers (such as agencies that manage home health and hospice care services). Individual caregivers include those providing professional, paraprofessional, and other services on a formal paid basis and those providing informal, generally unpaid services (often family members or friends). Organized Providers of Long-Term Care Services Most formal long-term care is provided through organized service providers that operate in specific settings ranging from an individual 's home to residential facilities within a community to institutional facilities such as nursing homes. Definitions of these long-term care service providers vary. States may label similar services differently or apply similar labels to services that differ. Institutional providers include nursing homes (used here to include what some regulations differentiate as skilled nursing facilities), rehabilitation hospitals, intermediate care facilities for those with mental retardation, long-term psychiatric hospitals, and long-term care units of acute care hospitals. Community-based residential care facilities include a broad and diverse category of facilities that provide supervision and assistance in settings ranging from apartments (private rooms, kitchens, baths, and door locks), ward-like settings with multiple beds; licensed or unlicensed personal care homes providing nonprofessional supervision and assistance to one or more residents; and licensed group homes with trained staff to supervise and assist people with mental retardation or mental illness to live as independently as possible. Home and community-based services include nonresidential community-based services provided by home health care agencies; nonmedical personal care services in individual homes and congregate residential settings; a variety of supportive services, such as adult day care or night care (e.g., when a family member works the night shift) in a protective setting; agencies that supply durable medical equipment

OCR for page 36
Improving the Quality of Long-Term Care to home users; and agencies that assist people in directing their own arrangements for such services. Within these general categories, considerable variation exists, which may affect the quality of life and quality of care for people using such services and the ability of those monitoring quality to detect problems or prompt improvements. Other providers and settings are sometimes included in discussions of long-term care. For example, hospice care organizations provide services over a period of weeks or months for those approaching death.2 Such services are also provided by many home health agencies, and some hospitals and nursing homes have hospice units or teams. Continuing Care Retirement Communities are another type of setting that might be included in discussions of long-term care. They have been developed to provide a geographically adjacent, commonly managed spectrum of care options primarily for older adults who hope, insofar as possible, to age in place and minimize disruptive moves. The options offered may include a skilled nursing facility and assisted living units, in addition to independent housing units. They serve primarily the upper- and middle-class elderly population. Table 2.2 shows the distribution of selected long-term care facilities by size for 1992 and 1998. Nursing Homes According to the Health Care Financing Administration (HCFA) survey and certification reporting, the number of nursing home beds and facilities has grown substantially in recent decades. Between 1978 and 1998, the number of facilities increased from about 14,200 to 17,800 (a 25 percent increase), and the number of beds increased from about 1.31 million to 1.81 million (a 39 percent increase) (Harrington et al., 1998b). According to the National Nursing Home Survey conducted by NCHS there were about 17,000 nursing homes in the United States with a total of 1.8 million beds and caring for 1.6 million residents in 1997 (NCHS, 2000).3 2   These and other providers such as psychiatric hospitals and intermediate care facilities for the mentally retarded are not addressed at any length in this report. 3   Nursing homes are defined by NCHS as facilities with three or more beds that routinely provide nursing care services. Facilities may be certified by Medicare or Medicaid, or not certified but licensed by the state as a nursing home. These facilities may be freestanding or a separate unit of a larger facility. Other surveys, such as the nursing home component of the Medical Expenditures Panel Survey (MEPS) conducted by the Agency for Healthcare Research and Quality (AHRQ), use a narrower definition of nursing home that requires the home to be certified and to provide 24-hour skilled nursing care.

OCR for page 36
Improving the Quality of Long-Term Care TABLE 2.2 Number of Long-Term Care Facilities and Beds: United States, 1992 and 1998   Facilities Beds Type of Facility 1992 1998 1992 1998   Number Nursing facilities—certified 16,804 17,458 1,714,756 1,806,944 Home care agencies State licensed 8,116 13,537 N/A N/A Medicare/Medicaid certified 6,240 9,726 N/A N/A Residential care facilities 37,770 51,227 614,804 878,804 Intermediate care facilities for the mentally retarded 5,888 6,553 137,114 125,909 Adult day care 1,847 3,590 N/A N/A SOURCE: Harrington et al., 2000c. As shown in Table 2.3, proprietary nursing homes accounted for 67 percent of all facilities. Fifty-six percent of the facilities were part of a “chain” (multi-facility organizations). More than three-fourths (77.7 percent) were certified by both Medicare and Medicaid, and nearly all nursing homes had some form of certification in 1997. The average-size nursing homes had 107 beds, with an occupancy rate of 88 percent. Half of the total facilities had 100 or more beds occupied by 71 percent of the residents (NCHS, 2000). The majority of nursing home residents were elderly people, white, and female. About 91 percent were 65 years and older, and 46 percent were 85 years and older. The average age of all residents at the time of the survey was 81 years. In addition to increases over the years in the number of nursing homes and nursing home beds, the types of services offered by facilities have expanded. Some facilities have created special units to serve people with specific conditions such as Alzheimer's disease. Other such units referred to as “post-acute” or “subacute” care units serve the relatively short-term needs of people discharged from acute care hospitals to recuperate from surgery. Nursing homes also provide a considerable amount of long-term care for people with severe mental or cognitive problems, especially older people with dementia or people with other disabling health problems (Mechanic, 1998). Over the past two decades, nursing homes in the United States have been transformed. First, rather than merely being permanent settings for frail elders to live out their remaining years of infirmity, many nursing homes now serve multiple populations, and nursing homes in general

OCR for page 36
Improving the Quality of Long-Term Care TABLE 2.3 Number and Percent Distribution of Nursing Homes, Beds, and Residents, by Facility Characteristics: United States, 1997 Facility Characteristics Facilities Beds Residents   Number Total 17,000 1,820,800 1,608,700 Ownership Proprietary 11,400 1,213,900 1,054,200 Voluntary nonprofit 4,400 465,400 422,700 Government and other 1,200 141,500 131,700 Certification Medicare only 800a 61,000 47,400 Medicaid only 2,300 184,700 156,300 Both 13,200 1,526,000 1,365,500 Not certified 700a 49,000 39,400b Affiliationc Chain 9,600 1,035,700 909,400 Independent 7,400 772,800 690,200   Percent Ownership Proprietary 67.1 66.7 65.5 Voluntary nonprofit 26.1 25.6 26.3 Government and other 6.8 7.8 8.2 Certification Medicare only 4.7a 3.4 3.0 Medicaid only 13.6 10.1 9.7 Both 77.7 83.8 84.9 Not certified 4.1a 2.7 2.5 Affiliationc Chain 56.3 56.9 56.5 Independent 43.2 42.4 42.9 aFigures should not be assumed reliable because the sample size is between 30 and 59, or the sample size is greater than 59 but has a relative standard error greater than 30 percent. bFacilities need not certify all their beds for Medicare or Medicaid residents. cExcludes a small number of homes and residents with unknown affiliations. SOURCE: NCHS, 2000. have become more heterogeneous (Banaszak-Holl et al., 1996). More than 2,500 Medicare- or Medicaid-certified nursing facilities in the country today are hospital based, and another 10 percent of the remaining free-standing facilities concentrate on serving relatively short-stay Medicare patients. The entry of nursing homes into the post-acute and recuperative market began in the early 1980s but accelerated in the late 1980s with the

OCR for page 36
Improving the Quality of Long-Term Care introduction of the short-lived Medicare Catastrophic Coverage Act. This trend continued throughout the 1990s with the emergence of managed care and its focus on reducing hospital use by contracting with alternate providers (Laliberte et al., 1997). Comparison of the level of functional impairment of nursing home residents in 1987 and 1996 in the two national nursing home surveys reveals that the proportion of all residents with impairment in three or more ADLs increased from 72 to 83 percent. Furthermore, there has been a substantial drop in the proportion of residents in nursing homes that manifest serious behavioral problems. This reported decline could be a product of several factors. For example, the implementation of the Pre-admission and Assessment Screening and Annual Resident Review (PSSRR) regulations restricting the use of nursing homes for persons with psychiatric diagnoses could contribute to this decline. Improved behavior management interventions in the period following the Omnibus Budget Reconciliation Act of 1987 (OBRA 87) is another possible explanation. Community-Based Residential Care Community-based residential care has been the mainstay of long-term care services for many years. Some residential care arrangements, such as board and care homes, adult foster homes for older persons and small group homes for those with mental retardation, are intended to be like family homes; and others, such as assisted living facilities, are intended to be more like apartments and sometimes like hotel rooms. Depending on the state and the services provided, residential care settings may or may not be licensed. Even when they are licensed, labels and definitions for residential services and facilities differ markedly between, as well as within, states (Mollica, 1996, 1998) and they are often unclear to consumers (GAO, 1999a). National comprehensive and systematic trend data are almost nonexistent. Board and Care Homes. Residential care facilities, known colloquially as board and care homes but rarely licensed under that name, for decades have been major providers of shelter and light levels of service. They are non-medical community-based facilities that provide at least two meals a day and routine protective oversight to one or more residents with functional limitations. Board and care homes are licensed and regulated under more than 25 different names (Hawes et al., 1993). Terms commonly used for these settings are group homes, domiciliary care homes, and personal care homes. Data from the 1991 National Health Provider Inventory indicate that there were about 30,000– 34,000 licensed board and care homes in the United States serving over half a million persons (Clark, et al., 1994).

OCR for page 36
Improving the Quality of Long-Term Care In addition there are an unknown number of unlicensed homes. Historically they provided care especially to people with mental illnesses or developmental disabilities. A quarter of the people with chronic mental illness live in some kind of sheltered care facility. Nearly three-quarters of them lived in licensed homes of this sort (Barnes, 1993).4 The label board and care home today is widely applied to settings that provide care to mostly older people who need some supervision and assistance with activities of daily living and cannot live, or choose not to live, in an independent household. In 1991, only about 32 percent of the homes primarily served a mental health population (Clark, et al., 1994). These homes increasingly are serving people with physical impairments. State regulations allow increasing levels of impairment to be admitted to and retained in residential care facilities (Mollica, 1998). These homes vary greatly in size, resident characteristics, services, and cost both within and across states. The majority of residents were elderly and two thirds were women. They also vary greatly in the amount, type and extent of regulations across states, and little systematic information is available about the quality of care provided or the quality of life in these settings. In order to fill the need for systematic information on what are known as board and care homes and the quality of care provided, a major probability 10-state study of board and care homes and their residents was conducted in late 1993 by Hawes and colleagues under contract with the Department of Health and Human Services. The 1993 study found that 92 percent of licensed homes and 62 percent of unlicensed homes provided personal care, such as assistance with ADLs (Hawes et al, 1995a).5 Most homes provided three meals a day and assistance with storage and supervision of medication. Many homes provided organized activities, recreation, and transportation, and some reported providing money management. About 25 percent of licensed facilities and 27 percent of unlicensed facilities provided professional nursing care, but many of these services were arranged through home health care agencies (Hawes et al., 1995a). Most of the 3,257 residents studied were elderly white women, who were widowed, divorced, or never married. Compared to nursing homes, residents in board and care homes are on the average less impaired. Yet 40 4   The committee did not address care that may be needed by or provided to people with serious mental illness in other “sheltered settings ” such as jails, prison, and homeless shelters. 5   Hawes and colleagues (1995a) have pointed out that the term “personal care” also has varied meanings in state regulations for board and care facilities. In some states, it refers to hands-on care, whereas in others, some types of hands-on care (e.g., assistance with transfers or toileting) are explicitly excluded.

OCR for page 36
Improving the Quality of Long-Term Care Although physicians play a key role in overseeing the medical aspects of long-term care, they are a small segment of the long-term care work force, reflecting in part the significance of nursing care and nonmedical services for those needing long-term care. Other factors that contribute to limiting the role of physicians are insufficient training to care for people with serious functional impairments residing either in the community or in nursing homes, and unattractive reimbursement rates for visits to nursing homes and personal homes (Ouslander et al., 1997). For frail older people, the issue of physician competence has been addressed with modest success by the creation of a specialty in geriatric medicine, which has been one step to improve physician training in both the assessment of medical needs of older people and the direction of their medical care within the long-term care context. The American Society of Internal Medicine and the American Board of Family Practice provide a “certificate of added qualification ” in geriatrics, but a relatively small number of physicians have qualified for this certificate.9 In addition, the American Medical Directors Association offers educational programs as well as a certificate for physician medical directors of long-term care facilities (Ouslander et al., 1997). For children needing long-term care, the role of physicians also raises special issues of training and skills involving accurate diagnosis, appropriate medical interventions, coordination of medical and nonmedical services, developmental assessment, and family counseling and guidance (Hobbs and Perrin, 1985; Perrin et al., 1993). FINANCING LONG-TERM CARE Payment sources are themselves an important influence on long-term care services. The mix varies depending on the characteristics of the person receiving care, the type of care provided, and the provider. The long-term care industry is heavily reliant on government funds and therefore constrained to a large extent by government policies. Comprehensive data are not readily available on sources and amounts of expenditures for the broad array of long-term care services discussed in this report. Most available data are for nursing home care and home health care services. More 9   Reflecting concern about fragmentation of the medical profession, the American Board of Medical Specialties (ABMS), which recognizes 24 specialties, has developed explicit criteria for specialty recognition. Individual specialty boards, such as the American Board of Internal Medicine, in turn, have criteria for recognizing subspecialties. In addition to full specialty or subspecialty recognition (the latter through certificates of special competence), boards may establish certificates for added qualifications subject to less stringent conditions for ABMS approval.

OCR for page 36
Improving the Quality of Long-Term Care over, expenditure data do not reflect the value of unpaid care provided by family, friends, and volunteers (for more information, see Arnoet al., 1999). Although national surveys track private spending on health services, data on out-of-pocket (uninsured) spending for many nonmedical personal care services and supportive housing services are limited. Care provided in freestanding (not hospital-based) nursing homes10 accounted for 8.5 percent (nearly $83 billion) of the $969 billion that Americans spent for personal health care in 1997 (Braden et al., 1998). Care provided by freestanding home health agencies accounted for another 3.3 percent ($32.3 billion) of the total personal health care expenditures. In the aftermath of Medicare's move to a prospective payment system for hospital services that provided incentives to shorten hospital stays, hospitals increased their sponsorship of nursing home and home care services. In 1996, hospital-sponsored services accounted for about 10 percent of total nursing home expenditures (up from 7 percent in 1990) and about 20 percent of home health expenditures (up from 11 percent in 1990) (Levit et al., 1997). Long-term care services are costly. For example, the average cost of nursing home care in 1998 was more than $50,000 per year, typically exceeding individual financial resources. Because of these costs, about two-thirds of nursing home residents rely on government assistance to pay for care, either from the outset or after they have exhausted their own resources (NCHS, 2000). Medicaid coverage provides a safety net; approximately one-third of the nursing home residents pay out of private funds when admitted and eventually spend down to Medicaid eligibility. As shown in Table 2.7, in 1997 the Medicaid program accounted for almost 48 percent of nursing home expenditures and Medicare accounted for 12 percent (Braden et al., 1998). For home health care services including short-term services,11 Medicaid accounted for only 14.6 percent of spending but Medicare accounted for almost 40 percent. Private health insurance played a small role in nursing home care (4.9 percent) but accounted for 11.5 percent of funding for home health care. Out-of-pocket payments represented a substantial share of funds for both types of care: 31 percent 10   “Nursing home care” covers services provided by skilled nursing facilities and intermediate care facilities including those administered by the Department of Veterans Affairs and those provided in Medicaid funded Intermediate Care Facilities for people with mental retardation. Hospital-based nursing facilities and home health expenditures are included under hospital expenditures (Braden et al., 1998). 11   Home health care services cover medical services provided in the home by freestanding agencies excluding medical equipment costs not billed through these agencies, nursing services provided by nursing registries, and nonmedical services such as housekeeping assistance and supervision (Levit et al., 1997).

OCR for page 36
Improving the Quality of Long-Term Care TABLE 2.7 Expenditures and Source of Funds for Nursing Home and Home Health Care: United States, 1997   Nursing Home Care Expenditures (billion dollars) Source of Funds Percent of total Home Health Care Expenditures (billion dollars) Percent of total Personal health care expendituresa $82.8 100.0 $32.3 100.0 Medicare 10.1 12.2 12.8 39.6 Medicaid (federal and state) 39.4 47.6 4.8 14.9 Private health insurance 4.0 4.8 3.7 11.5 Out-of-pocket payments 25.7 31.0 7.0 21.7 Other 3.6 4.3 4.0 12.4 aHCFA's count of health care expenditures uses a narrow definition of home health expenditures, excluding personal care services and many other HCBS expenditures. SOURCE: Braden et al., 1998, pp. 124–125. for nursing homes and 22 percent for home health services (Braden et al., 1998). Funding for residential care involves widespread use of personal resources. Much of the cost of assisted living is paid for by consumers from their personal resources (Hawes et al.99). Board and care homes are funded mostly through Supplemental Security Income, State Supplemental Payments, and Medicaid. Programs Funding Long-Term Care Medicare Program Although many Americans believe that the federal Medicare program covers long-term care, it does not. From the outset, however, the program has covered some nursing home and home health services, in part because they were seen as potential alternatives to more expensive, hospital-based acute care services. Medicare covers nursing home care only when a beneficiary requires daily skilled inpatient nursing or rehabilitation services and has had a 3-day hospital stay in the 30 days prior to nursing home admission. The first 20 days of such care are covered in full; a maximum of 80 additional days per benefit period are covered with a copayment ($96.00 per day in

OCR for page 36
Improving the Quality of Long-Term Care 2000).12 Medicare's adoption of a prospective payment system for hospital care created incentives for shorter inpatient stays and has encouraged nursing homes to develop post-acute care units to handle surgical and other patients who require skilled nursing care that formerly would have been provided in a hospital. Medicare covers skilled nursing post-acute care (within 30 days following discharge from an acute care hospital) not only in nursing homes, but also in rehabilitation facilities and through home health agencies. Post-acute providers accounted for 24 percent of Medicare Part A expenditures in 1994 before falling in 1995 and 1996 (ProPAC, 1997). Medicare also covers certain health services provided in personal residences or community-based residential settings without requiring a prior hospital stay. To qualify for this coverage, beneficiaries must be homebound and under the care of a physician who orders part-time or intermittent skilled nursing care or certain other services, such as physical therapy.13 Medicaid Program Under the Medicaid program, states set payment levels, establish eligibility criteria, and define covered services subject to broad federal guidelines. These guidelines require that states cover nursing facility care for those over age 20 and home health care for those eligible for skilled nursing services. In addition, states may receive federal matching funds to cover certain optional services including nursing facility care for people under age 21, services in intermediate care facilities for those with mental retardation, and personal care services. Table 2.8 shows the distribution of Medicaid spending across major types of services for each beneficiary group. Medicaid, a federal–state entitlement program, covered medical and related services for more than 41 million people at a cost of $123 billion in 1997 (Health Care Financing Review, 1999). Personal attendant services, a major vehicle for flexible, consumer-directed long-term care, are available as a Medicaid plan service in some states, though many states do not make this option available to people over age 65. Long-term care, particularly care provided in institutional settings, accounts for a substantial portion of Medicaid expenditures. Overall, long- 12   A benefit period, which is roughly similar to an episode of serious illness, starts when a beneficiary enters a hospital and ends after a break of 60 days in the use of inpatient hospital or skilled nursing care. 13   Federally qualified health maintenance organizations serving Medicare beneficiaries are not restricted to the part-time, intermittent definition for the home health services they provide.

OCR for page 36
Improving the Quality of Long-Term Care TABLE 2.8 Medicaid Payments, by Type of Service and Category of Beneficiary: United States, 1997   Children Adults 18–64 Adults 65 and Older Disabled Total   (in millions) Total $15,666 $12,298 $37,721 $54,192 $123,551 Inpatient hospital 5,288 4,557 1,931 10,423 23,143 Intermediate care facility for the mentally retarded 22 6 637 8,988 9,798 Nursing facility 39 39 24,591 5,448 30,504 Physician 1,848 1,889 791 2,298 7,041 Outpatient hospital 1,327 1,299 605 2,721 6,169 Home health 413 85 3,351 8,113 12,237 Prescribed drugs 1,010 881 3,343 6,518 11,972 Other 5,719 3,542 2,372 9,620 22,687 SOURCE: Health Care Financing Review, 1999, pp. 304–312. term care expenditures accounted for 40.5 percent of Medicaid expenditures, but the percentage varied among states from less than 30 percent to nearly 60 percent (Wiener and Stevenson, 1997). Medicaid Waivers for Home and Community-Based Care. Since 1975, states have had the choice to offer personal care services (PCS) as an optional state plan benefit in their Medicaid benefit package (42 C.F.R. 440.167). These services include assistance with activities of daily living (e.g., bathing, dressing, and eating) and instrumental activities of daily living (e.g., shopping and cooking). When a state offers PCS as an optional state plan benefit, the services must be made available statewide to all individuals meeting financial and need-based criteria (LeBlanc et al., 2000a). The Medicaid HCBS waivers program was established with the passage of OBRA 87. This resulted in Section 1915(c) of the Social Security Act, which authorized states to exercise the option of providing HCBS as an alternative to institutional care (Miller, 1992; Miller et al., 1999a). As indicated earlier, currently, there are 1915(c) HCBS waivers active in the District of Columbia and in every state except Arizona (LeBlanc et al., 2000b). States are allowed to target waivers to specific population groups rather than offering services to all categorically or medically needy groups. States, however, must apply for a specific number of slots for individuals for each waiver, subject to the approval of HCFA. Because

OCR for page 36
Improving the Quality of Long-Term Care states are permitted to determine the specific types and mixes of services covered under these waivers, such services are not uniformly available across states. A number of studies have examined recent trends in PCS and HCBS participants and expenditures (Miller et al., 1999a; Harrington et al., 2000f; LeBlanc et al., 2000a,b). Other studies have examined the predictors of HCBS participants and expenditures (Miller et al., 1999b; Harrington et al., 2000i). Between 1988 and 1998, both the PCS state plan benefit and HCBS waiver programs were growing at a rate surpassing the growth of nursing facility placements (Burwell, 1999). Nonetheless, the amount states spend on institutional care continues to far outweigh, by a factor of three, what they spend on home and community-based alternatives (Burwell, 1999). It should be noted, however, that Medicaid pays for room and board for those individuals living in institutions but not for those living in the community, which in part explains the higher spending for institutional services. The vast majority of spending under HCBS waivers covers services for younger people with mental retardation or developmental disabilities (Wiener and Stevenson, 1998). Disability advocates have expressed frustration over the smallness of the PCS and HCBS waiver programs, which they feel are not adequate to allow access for all Medicaid participants with disabilities (National Blue Ribbon Panel on Personal Assistance Services, 1999). In 1998 –1999, 26 states had PCS state plan optional benefits (see Table 2.5). Across the states, there were a total of 467,487 participants in the PCS state plan option in 1998-1999. Table 2.5 shows there were 211 HCBS waiver programs and 561,510 participants in the states in 1997, the most recent year for which participant data were available for all states. When all participants in the PCS program were combined with the HCBS waiver program, there were about 1 million participants in personal care and waiver programs. To be authorized for the waiver program, states must provide assurances that the waivers will be cost-effective. The average Medicaid cost with the waiver should not be more than the average Medicaid cost without it. Many states also have imposed per-person spending caps. As a reflection of policy makers' fears of creating a much expanded long-term care benefit, and thereby greatly increasing costs, the total number of people who can be covered by waivers is generally limited. Some states, such as Colorado, screen people to assess, first, whether they need nursing home care and second, whether they are likely to enter institutional care (Wiener and Stevenson, 1998). This targeted approach, although consistent with federal legislative intent, has been criticized as being too restrictive and unduly limiting access to home and community-based services.

OCR for page 36
Improving the Quality of Long-Term Care Supplemental Security Income Program The primary source of public financing for residential board and care programs is the federal Supplemental Security Income (SSI) program (Title XVI of the Social Security Act), which provides a guaranteed minimum income to low-income adults and children with relatively severe disabilities who may have long-term care needs. The SSI eligibility requirements and benefit levels are nationally established. States have the option to provide State Supplemental Payments (SSP) to supplement the SSI payments. Many states offer higher supplementation for individuals living in board and care, personal care homes, or foster care homes. Each state sets its own rates for SSP and these rates determine the amount that many residential care facilities receive as monthly payments for services. The SSI/SSP payment amount was $3.8 billion in 1998. The number of children and adolescents covered by the SSI program has grown from approximately 265,000 in 1989 to almost 847,000 in 1999 (SSA, 1999). Much of this growth may reflect changes in public policies and the types of disabling impairments that are recognized and diagnosed for benefits. Some of the growth also reflects marked improvements in survival of young people with more severe chronic health conditions (Perrin et al., 1998, 1999). State-Funded Programs States vary enormously in the proportion of their state dollars that go to nursing homes compared to home and community-based services. According to both a General Accounting Office (GAO) study (GAO, 1994) and an AARP study (Alecxih et al., 1996), several states have made substantial inroads into shifting the balance of funds from nursing homes to HCBS services; these states are typically characterized by strong state and local organizations with effective local case management to target and allocate services. In addition to the Medicaid and SSP funding, states also fund long-term care with earmarked dollars from the Older Americans Act, from allocations of the Social Services Block Grant (Title XX), and from their own general revenues raised through taxes and other means. Title III of the Older Americans Act funds care management, home delivered meals, respite programs, and various caregiver programs. Social Services Block Grants can be used for long-term care as well; however, since the amounts of these grants have not increased, states have tended to convert the programs to Medicaid to access federal match. Most notably, in the early 1990s, California converted a huge In-Home Supportive Services program from Title XX to Medicaid.

OCR for page 36
Improving the Quality of Long-Term Care States still use substantial amounts of their own money for long-term care without federal matching dollars or federal grants. Typically these moneys are used for consumers who do not quite meet the financial or functional eligibility for Medicaid. Occasionally, state dollars are used to pay spouses for care since spousal payments are not allowed under Medicaid. Some states use state money as a cushion to pay for care when Medicaid eligibility is denied. Those who make that decision can use presumptive eligibility for HCBS services to make up the shortfall. Substantial local public money also goes into long-term care, especially when states require local matches for state programs. Some communities have raised local tax levies earmarked for long-term care. Long-Term Care Insurance Private insurance for long-term care covers limited numbers of people, types of services, and percentage of expenses. Although private insurance accounts for about 5 percent of nursing home and 12 percent of home health spending, most of this is ordinary health insurance that, like Medicare, provides limited benefits for extended care. Among elderly Americans—those most at risk—perhaps 7 percent have long-term care insurance (Wiener and Stevenson, 1998), and few people under age 65 purchase it. Some large employers offer such insurance at group rates, and Congress is considering offering federal employees and retirees long-term care insurance, but the employee typically pays the full premium. A major barrier to the growth of private long-term care insurance is its cost (Wiener et al., 1994). Access to long-term care insurance is also restricted by insurers' underwriting criteria that limit initial purchase of individual policies to those in reasonably good health who can take care of themselves. COORDINATION OF LONG-TERM CARE SERVICES The concept of coordination of care is not defined in a precise manner. It can be more or less formal and can involve all or only a subset of services that an individual might need. Wide disparities in this process exist across states and across categorical eligible groups. Integration of care through a managed care system implies the greatest degree of coordination, though typically long-term care services are not covered in the care that is capitated. Moreover, managed care does not imply vigorous care management at the level of the individual enrollee. A few capitated demonstration programs for people who are dually eligible for Medicare and Medicaid (such as the Minnesota Senior Health Organization, Commonwealth Fund supported demonstrations in New York

OCR for page 36
Improving the Quality of Long-Term Care State, and the Wisconsin Partnerships) are indeed attempting to institute a care management capability that follows the consumer over time and across services including acute care and the full range of long-term care services. Often nurse practitioners are responsible for this coordination, attempting to follow the consumer whether they are in clinics, hospitals, home care, or nursing homes. The PACE (Program of All-Inclusive Care for the Elderly) programs are care organizations that tend to enroll about 300 people, all of whom are low income and all of whom are nursing home eligible. In this case, the enrollees are closely managed by a multi-disciplinary team (R.L. Kane, 1999). Most long-term care is coordinated by some combination of the consumers themselves or their families, who by default are typically left to coordinate fragmented services. Some people, because of illness or cognitive limitations, cannot coordinate their care and lack family members willing or able to do so. A private-pay care management industry has arisen to meet this need. As already mentioned above, the home and community-based waiver program tends to have built-in case management, responsible for initial and ongoing assessment, identifying services, and coordinating and monitoring a care plan. Given that services in residential care settings are often covered for Medicaid-eligible people in HCBS waivers, care managers also coordinate those services for eligible people. At the same time, provider agencies have their own coordination capabilities and claims, and complex agencies often have a need to coordinate their own services across disciplines, as well as to coordinate with other agencies concurrently serving the client. Home health agencies, for example, not only coordinate care for their clients, but also undertake “skilled evaluation and planning.” When performed by a nurse or therapist, it is also a Medicare-covered skilled service. The Minimum Data Set for nursing homes, discussed in Chapter 4, is meant to be a vehicle for nursing homes to do care planning. Although most Medicaid money is expended in nursing homes, very few states have a system whereby the care managers for HCBS follow the individual after admission to a nursing home. For children, a primary care physician caring for a child with serious chronic illness will typically be coordinating a range of inpatient and home-based medical services including sub-specialist services that may require negotiation of conflicting perspectives and treatment recommendations. For example, a child with hemophilia may need a hematologist, orthopedist, physical therapist, specialized dentist, blood bank specialist, and social worker, as well as specialized nurses or home health aides. The physician will work with families and care managers or care coordinators (often nurses or social workers) to assess the child's developmental

OCR for page 36
Improving the Quality of Long-Term Care progress and needs, develop appropriate care plans suited to changing medical and developmental status, and advise on choices related to education options. The care coordinator will typically help link the family with appropriate services to implement the care plan, monitor the plan and outcomes, and generally assist the family and child in moving toward greater control and management of services (see Jessop and Stein, 1994; Perrin and Bloom, 1994). Consumer-Centered Care Consumer-centered care that reflects the preferences and choices of the consumers of the service is desirable for almost all people across all health care settings, including long-term care settings, although the specific elements may vary. Moreover, not all consumers of long-term care are as well positioned to exercise their preferences and choices as in acute care markets. Generally, nursing homes with a consumer-centered focus may emphasize resident service in staff training, actively involve residents and or their families in care planning, provide a physical environment that supports, to the extent applicable, resident privacy and autonomy, and regularly solicit feedback from residents and families regarding their experiences and satisfaction with care. The philosophy of residential care settings such as assisted living emphasize autonomy and they may be expected to allow for individual preferences and privacy. Likewise, small group homes for people with developmental disabilities and, to a lesser extent, mental illness are intended to allow for increased independence, choice, and involvement in the community. Consumer-centered approaches are also applicable in home care delivery through collaborative care planning, an emphasis on educating and building the self-care capacity of recipients of care and their families, and efforts to integrate professional services with informal community care resources. The principles of consumer-centered care for children have been extended to encompass family-centered care and family-directed care. Family-centered long-term care for children with physical and developmental disabilities has been mandated and supported through federal legislation, specifically the Individuals with Disabilities Education Act (1997) and its subsequent amendments (IDEA, 1997, P.L. 105-17, originally named Education for All Handicapped Children Act, PL 94-142). This legislation provides for early intervention services and an individualized and appropriate public special education for children with disabilities in the least restrictive environment, at no cost to families. By law, families must be included as team participants through referral, evaluation, and yearly assessments of progress. Eligible children receive special education services, physical and occupational therapy, speech and language therapy, and other related medical and social services as identified

OCR for page 36
Improving the Quality of Long-Term Care through coordinated service plans. Plans for families with infants and toddlers include services to support and strengthen families through assistance with employment, obtaining health insurance, and linking them with support networks. Family involvement in the care of children with long-term health conditions has been supported by a variety of family assistance services, including those provided by volunteers (Trachtenberg and Batshaw, 1997; Perrin, 1998). CONCLUSION This profile of long-term care highlights the diversity that characterizes the population using these services and the settings in which care is provided. It depicts a “system” of long-term care that is highly variable across states and communities, fragmented, and unevenly coordinated. Different kinds of long-term care services have evolved, in part to meet the varying needs and, to an uncertain degree, the preferences of users. A combination of forces including the needs and preferences of long-term care users, federal and state regulatory requirements, professional doctrines, and financial incentives created by payment mechanisms and capital markets have sometimes worked together to increase the availability of needed forms of long-term care, such as increasing options for noninstitutional care.