2

Long-Term Care in Home and Community-Based Settings

This chapter presents an overview of the current home and community-based long-term-care (LTC) system and discusses some of the major trends that are influencing that system. Important changes are occurring in both home care and residential care regarding who is being served, how services are financed, who provides those services, and how they are delivered. How these changes could ultimately affect the system of home and community-based LTC is briefly explored.

OVERVIEW

A great deal of information and research is available to answer questions about who uses home and community-based LTC, who pays for it, who provides it, and how it is delivered. This overview is not meant to be an exhaustive review of all that is known; rather, it provides basic descriptions of the key factors influencing the policy context the planning committee examined.

People Who Use Home and Community-Based Long-Term Care

More than 10 million Americans of all ages currently need some type of LTC to remain in their own homes or in other community-based settings (compared with only 2 million persons in institutions such as nursing facilities or chronic care hospitals). Contrary to most stereotypes, only a little more than



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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings 2 Long-Term Care in Home and Community-Based Settings This chapter presents an overview of the current home and community-based long-term-care (LTC) system and discusses some of the major trends that are influencing that system. Important changes are occurring in both home care and residential care regarding who is being served, how services are financed, who provides those services, and how they are delivered. How these changes could ultimately affect the system of home and community-based LTC is briefly explored. OVERVIEW A great deal of information and research is available to answer questions about who uses home and community-based LTC, who pays for it, who provides it, and how it is delivered. This overview is not meant to be an exhaustive review of all that is known; rather, it provides basic descriptions of the key factors influencing the policy context the planning committee examined. People Who Use Home and Community-Based Long-Term Care More than 10 million Americans of all ages currently need some type of LTC to remain in their own homes or in other community-based settings (compared with only 2 million persons in institutions such as nursing facilities or chronic care hospitals). Contrary to most stereotypes, only a little more than

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings FIGURE 2.1 Age distribution of individuals in community settings in need of long-term care. NOTE: Children are those under 18 years old, working-age adults are those 18 to 64 years old, and the elderly are those 65 years and older. SOURCE: GAO 1995c. half of the total population of home and community-based LTC users are elderly individuals (ages 65 and older) (see Figure 2.1). Most of the rest (two-fifths) are working-age adults (people ages 18 to 64); children under age 18 represent a very small segment of the total population of these LTC users (GAO, 1995c). Just as the ages of the users of LTC vary greatly, so does the extent of their disabilities (IOM, 1991). Importantly, the presence of a disability does not automatically mean that a person requires outside assistance; an estimated 40.1 million Americans are living in the community with one or more disabilities because of a physical or mental health condition (Eustis et al., 1995). Some users, however, require 24-hour care that involves assistance with fundamental activities of daily living (ADLs) such as getting in and out of bed and administering complex medical procedures; others need only occasional help with such tasks as cleaning or going grocery shopping. Although all kinds of users can be found in both home and residential care settings, on the aggregate level some notable differences exist between the users in these two types of settings.

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings Home Care The need for personal assistance with everyday activities increases with age. In 1990–1991, 50 percent of the civilian noninstitutional population 85 years and older needed such assistance compared with only 9 percent of the population aged 65–69 years (Bureau of the Census, 1995). An estimated 1.4 million people received home health care (as opposed to other types of long-term-care services such as personal assistance) in 1993. Statistically, this group tended to be elderly (about 75 percent were 65 years or older), female (about 65 percent), and white (68 percent) (Strahan, 1994). Residential Care Although estimates vary depending on how the term is defined, the total number of people residing in both licensed and unlicensed residential care settings may be as high as 1 million (Clark et al., 1994). Several recent studies (cited below) have found serious levels of disability among these residents; they suggest that the population is aging and experiencing profound levels of chronic disease, functional impairment, cognitive impairment, and chronic mental illness. One study found that half of the residents in residential care settings1 were over 65 years of age and another 43 percent were 22–64 years of age (Sirrocco, 1994). This breakdown changes dramatically depending on the type of setting examined. For example, in settings that were not for the mentally retarded, 70 percent of all residents were 65 years and older; in settings for the mentally retarded, only about 10 percent of the residents were 65 or older. Recent data imply that the level of impairment for residents in such settings2 may have increased over the past decade. Studies in the early 1980s found that less than 10 percent of residents had problems with bladder incontinence, whereas a 1993 study found that more than 20 percent had this problem (Hawes et al., 1994). Dittmar and Smith (1983) found only 3 percent of residents using wheelchairs and only 2 percent bed- or chair-bound in 1983, but again, 10 years later, Hawes and colleagues (1994) found that 15 percent of residents were using wheelchairs and 7 percent were bed- or chair-bound. Estimates of impairments in mobility sufficient to limit physical activity outside the facility range from 31 to 44 percent (Dittmar and Smith, 1983; Mor et al., 1986). 1   Sirrocco (1994) actually used the term “board and care home,” defined as “a residential setting that provides either routine general protective oversight or assistance with activities necessary for independent living to mentally or physically limited persons.” 2   The statistics cited in this section refer primarily to residents of board and care facilities. Little information is known collectively about residents of the much more broadly defined residential care settings covered in this report.

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings TABLE 2.1 Government Funding for Home and Community-Based Long-Term Care, by Source, FY 1993 Source Amount Medicare $10.1 billion Medicaid $7.4 billion State programs $702 million Older Americans Act $654 million Social Services Block Grants $500 million Supplemental Security Incomea $23.6 billion Social Security Disability Insurancea $31.2 billion a   The exact amount of these funds that go specifically to support home and community-based long-term care cannot be determined. It is certainly not the entire amount. SOURCES: AoA, 1994; U.S. House of Representatives, 1995. These studies also suggest a relatively high level of cognitive impairment. Hawes and colleagues (1994) found that slightly more than one-third of residents had moderate to severe cognitive impairments. Some studies indicate much higher percentages (Hawes et al., 1995). Likewise, studies consistently find that between 10 and 15 percent of residents in these settings experience developmental disabilities and that approximately 33 percent are diagnosed as having a chronic mental illness (Dittmar and Smith, 1983; Mor et al., 1986; Hawes et al., 1994). Payers for Home and Community-Based Long-Term Care Long-term care is paid for by many different sources. Along with substantial contributions from the recipients themselves and their families, more than 100 federal programs provide support of some sort for LTC. As shown in Table 2.1, however, several major government programs finance the majority of such care (NASHP, 1994). Funding is provided through Medicare, Medicaid, a variety of state programs that are funded through individual states' general revenues, Older Americans Act (OAA) programs, Social Services Block Grants (SSBGs), and the Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) programs. The Department of Veterans Affairs and the Department of Defense (through its Civilian Health and Medical Program of the Uniformed

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings Services, or CHAMPUS) also provide funding for home and community-based LTC. Medicare provides home health benefits for individuals who are in need of skilled nursing care on an intermittent basis or who need physical or speech therapy. Medicare spent $10.1 billion on such care in 1993. Of concern to many policymakers is the recent rapid increase in Medicare home health payments. In 1988, Medicare spent only $1.9 billion on home health services. Thus, today's spending represents a 530 percent increase from just eight years ago (U.S. House of Representatives, 1995). This increase is largely accounted for by an increase in the intensity of service per participant and by liberalization of the eligibility rules, rather than an increase in the number of beneficiaries (Bishop and Skwara, 1993). Medicaid also provides a major source of funding for home and community-based LTC. In 1993, Medicaid outlays for such care totaled $7.4 billion. This amount is dwarfed, however, by the $36.3 billion that Medicaid spent on institutional LTC during the same period. On their own initiative, many individual states have also developed a variety of home and community-based LTC programs in addition to providing substantial amounts of matching funds for federal programs. Funding for state home and community-based LTC programs totaled $702 million in FY 1993 (AoA, 1994). The OAA funds a range of nonmedical in-home services, such as home-delivered meals and chore aides, for individuals age 60 and older. It also provides funding for the LTC ombudsman program, which provides advocacy and quality assurance for residents in board and care (B&C) facilities and, in a few states, home care consumers. In FY 1993, the OAA provided $654 million for home and community-based services (AoA, 1994). Social Services Block Grant funds can be used for such home and community-based services as case management, homemaker services, and transportation; each state is allowed to determine what services should be offered to whom. In FY 1993, about $500 million in SSBG funds were spent on such services (AoA, 1994). The federal SSI and SSDI programs provide cash assistance to aged, blind, and disabled individuals and to their dependent spouses and children. Many states supplement the federal SSI allotment given to these individuals. In FY 1993, funding for the SSI program equaled $23.6 billion and funding for SSDI equaled $31.2 billion (U.S. House of Representatives, 1995). Importantly, only a portion of the money provided through these two programs goes directly to pay for LTC services for older and disabled individuals. One of the important services paid for through these programs, however, is care provided to low-income residents of B&C homes. A very small amount of home and community-based LTC is paid through private LTC insurance policies. In 1993, these policies accounted for only 0.02

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings percent of total LTC spending3 (U.S. House of Representatives, 1995). Possible reasons for this low level include consumers' lack of familiarity with the policies, their perceived lack of need (exacerbated by uncertainty over whether the government will eventually provide benefits duplicating those provided under the policies), and the relatively high cost of the contracts, especially for the older individuals most likely to purchase them (HIAA, 1992; Estes and Bodenheimer, 1993). Additionally, concerns have been raised about the design and marketing of long-term-care insurance policies, such as not selling policies to people with preexisting health conditions or disabilities and high-pressure sales pitches (Consumer Reports, 1991; GAO, 1993). In recent years, several changes have been proposed for the financing of LTC. Some proposals would use Medicare financing to pay for LTC benefits. Several other proposals call for changes in the tax laws, such as offering tax credits to family caregivers or providing special tax deductions to individuals who purchase private LTC insurance. All of these changes would result in substantially greater public subsidy of LTC. Concurrently, however, Congress is also considering major legislation that would turn the Medicaid program over to the states through block grants; such legislation would impose substantial spending limits on federal contributions to the program and would allow states to define and determine program eligibility individually. Various cost-cutting measures are also being considered for the Medicare program; these include increased use of managed care, greater cost-sharing requirements from high-income beneficiaries, and increases in the premiums and copayments paid by all beneficiaries. All in all, the outlook for governmental financial support of LTC services, especially for home and community-based care, is uncertain at best. Providers of Home and Community-Based Long-Term Care Home Care Home care services are provided by both informal caregivers such as family members and friends, and formal caregivers such as home health nurses and chore aides. Close to 67 percent of all home and community-based LTC consumers receive care from informal caregivers, 19 percent from a mix of informal and formal caregivers, and 14 percent solely from formal caregivers (Hing and Bloom, 1990). The type of care provided ranges from low-technology assistance such as housecleaning to high-technology services such as administering intravenous medications. 3   This figure for LTC insurance policies represents primarily nursing facility costs, not costs in home and community-based settings.

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings As noted above, most home care is provided by informal caregivers. Eight of every 10 of these caregivers provide unpaid assistance an average of 4 hours a day, 7 days a week. Most of these informal caregivers are women (75 percent), and nearly one-third are over the age of 65 (Pepper Commission, 1990). Information on the number of formal home care workers, both professional and paraprofessional, is limited. In part, this results from the variety of employment settings. Home care workers may be employed directly by an agency (either certified or uncertified), listed in a referral registry, or hired independently by a consumer (Close et al., 1994). Nonetheless, some information does exist. In 1992, for example, approximately 14,000 home care agencies were in operation in the United States; slightly more than half of these agencies were certified to participate in the Medicare program (NAHC, 1993). To give a sense of the size of the workforce, in 1990, Medicare-certified home health agencies employed 146,958 full-time-equivalent workers including nurses, therapists, and personal care aides. Estimates of the total number of paraprofessional aides alone in the home care industry range from 300,000 to 500,000 (Feldman et al., 1990). Paraprofessional home care workers, who provide the bulk of formal home care, tend to be overwhelmingly female, to be disproportionately nonwhite, and to have low educational levels (Feldman et al., 1990). Even full-time workers have incomes that are barely above poverty level. Furthermore, very few workers enjoy fringe benefits such as health insurance, pensions, or sick or vacation pay, and most have irregular hours of work as well. Compared with health aides employed in hospitals and nursing homes, home care workers tend to be older and the least well paid (Crown et al., 1995). In some areas of the country and with certain types of agencies (primarily non-Medicare-certified for-profit agencies), problems with recruitment and high staff turnover exist (Capitman et al., 1994b). Residential Care Estimates of the number of residential care settings vary a great deal. In part, this arises from differences in the way such settings are defined. One recent survey found approximately 18,000 B&C homes in operation in the United States in 1991 (Delfosse, 1995).4 Most of these homes were located in the Pacific and South Atlantic regions of the country; almost half were located in urban areas. 4   For that study (Delfosse, 1995), a B&C home was defined as “a residential setting that provides either routine general protective oversight or assistance with activities necessary for independent living to physically limited persons (excludes those for the mentally retarded).”

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings Another study found approximately 34,000 licensed B&C homes5 and an unknown number of unlicensed homes, although the number of unlicensed homes is thought to be large—perhaps equaling the number of licensed homes (Clark et al., 1994). Several other studies have provided estimates of as many as 65,372 residential care facilities, housing between 104,803 and 1 million residents, depending on how the facility is defined (ALFAA, 1995). Residential care settings vary tremendously in several ways: size (from 2 beds to more than 1,000), monthly charge (some charge on a sliding scale and can accommodate a low-income person with the ability to pay less than $100; others charge more than $4,000), and the range and intensity of services provided (from no services to daily nursing care). Some settings are targeted or marketed to younger persons with chronic mental illnesses or developmental disabilities, others are targeted exclusively to the elderly, and yet others serve a mixed-age population. The supply and use of both home care providers and residential care settings also varies enormously by region of the country; for example in the Midwest there is greater use of home care providers and fewer residential care setings compared to the West, where this trend is reversed—with a greater overall supply and use of residential care settings and less reliance on home care providers (Sirrocco, 1994). Staffing in residential care settings also varies a great deal depending on the setting type. In general, a typical staff might include administrative personnel, kitchen workers, housekeepers, and personal care aides (Kane and Wilson, 1993). Compared with staff duties in nursing facilities, staff responsibilities in residential care settings, particularly smaller facilities, are less complex and differentiated; a housekeeper may help prepare meals as well as provide transportation to medical appointments. A number of concerns have been raised about the qualifications, supervision, training, and turnover associated with staff in residential care settings (Hawes et al., 1995). Of special concern, given the increasing frailty of residents in these settings, is the administration of medications by inadequately trained or unqualified workers (GAO, 1992). Although a great deal of variation exists in the number and nature of residential care settings, one thing is certain: The number and use of these types of settings are growing rapidly. Financial analysts predict that the residential care industry will grow almost threefold within the next five years, from a $10- to $12-billion market in 1994–1995 to a $35-billion market in the year 2000 (ALFAA, 1995). 5   This estimate also excludes homes for the mentally retarded as well as other homes licensed by departments of mental health for special populations (Clark et al., 1994).

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings TRENDS IN HOME AND COMMUNITY-BASED CARE Several trends in recent years have changed the nature of home and community-based care and will continue to affect its development over the next several decades. Some trends reflect positive changes that will ultimately benefit everyone; others are much more troubling. Among the more important are shifts in attitudes about the provision of care; a growing population; changes in the supply and role of informal caregivers; heightened concerns about cost, access, and availability of services; and an increase in service delivery experimentation. These trends are discussed in more detail below. Specific quality problems have also been observed in this area; these are noted briefly below and explored in more detail in Chapter 3. Shifts in Attitudes About the Provision of Care Our health care system has traditionally been based upon the goal of successfully diagnosing, treating, and curing illnesses. Most chronic and disabling conditions that lead to the need for LTC, however, do not fit easily into this framework. In the LTC context, some change in emphasis has been identified: from focusing on extending life for as long as possible to ensuring that the quality of life is the best possible for the individual who is ill or disabled. This shift has been especially notable in the treatment of younger individuals with disabilities. The passage of the Americans with Disabilities Act in 1990 provided the touchstone for a new conceptualization of how to treat disability; it seeks to maximize people's autonomy, to find the least restrictive environment in which the person can live, and to achieve a more consumer-directed system of care. This new way of thinking rejects the old view of disability as a social problem and of disabilities themselves as conditions to be cured. It seeks to view people with disabilities as people with problems that can be solved, if society provides sufficient support and access (Lewin-VHI, 1995a). However, in all aspects of LTC, the trend toward greater consumer empowerment is gaining sway. More programs are putting a priority on consumer-directed care. More providers are training consumers to perform self-care. These changes represent a significant departure from old schools of thought, but they also pose more challenges for consumers, providers, and society at large. Not the least of these relate to the quality of services and the quality of life achieved for individuals requiring noninstitutional LTC.

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings Growing Population of Consumers The population most likely to need home and community-based LTC services is growing. Much of this growth will occur as the baby boom generation ages. While, today, 1 in 8 Americans is over the age of 65, by 2050 that ratio will change to 1 in 5, with the fastest period of growth occurring between 2010 and 2030 (Bureau of the Census, 1995). The growth of the “oldest old,” those 85 and older, will be the most dramatic; although they compose only 10 percent of the current elderly population, by 2050 they will make up 24 percent of the elderly population. As discussed earlier, the need for LTC generally increases dramatically with advanced age. More growth will occur in the population of LTC users as a consequence of medical innovations that allow individuals—both young and old—to live longer and to survive disabling accidents. New chronic and acute illnesses and disabilities, such as those arising from the acquired immune deficiency syndrome (AIDS) epidemic, also threaten to increase the overall need for LTC (IOM, 1990). The need for home and community-based care is also driven in part by changes in the financing and provision of health care generally. For example, changes to Medicare's prospective payment system in the 1980s caused more people to be released from hospitals back into the community “quicker and sicker” (Estes and Bodenheimer, 1993). Additionally, far more medical procedures are being done on an outpatient basis. High-technology equipment has been developed and adapted to allow individuals with medically complex conditions to be treated outside of hospitals and nursing facilities. For example, large, hospital-based ventilators have been replaced with smaller portable models that can be used at home, on the job, or at school (Perrin et al., 1993). Changes in the Supply and Roles of Informal Caregivers The majority of LTC services continue to be provided by informal caregivers such as family members and friends. However, a combination of demographic changes has resulted in a decrease in the number of these caregivers. Whereas in the past, elderly and disabled individuals typically were cared for in the home by family members, today this pattern is complicated by the reality of the geographic dispersion of families, overall smaller family size, and an increase in the number of people working outside the home (GAO, 1995c). Additionally, given the overall aging of the population, even when family members are nearby, they may not be able to care adequately for their relatives as a result of their own illnesses and disabilities. The push to care for sick and disabled individuals at home, supported by increasingly complex medical technology, has also meant that many informal

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings caregivers are now responsible for learning and performing extremely technical procedures that once were the domain of medical professionals and other formal caregivers. This can be problematic when little follow-up or monitoring is provided after discharge or initial orientation. For example, a family member might receive some training on how to use a piece of medical equipment, such as a ventilator, when a patient is discharged from the hospital, but may not receive any follow-up to ensure that the equipment is being used and maintained properly. Often, systems of home and community care work well in the first several weeks after a person is discharged from a hospital. After that point, however, nurses, therapists, or other care providers may change, and the new staff may less well trained to care for caring for the person's needs. Equipment may malfunction, and complex multidisiciplinary services may break down. Without appropriate follow-up and monitoring, preventable problems could lead to rehospitalization or even death if they are undetected. Heightened Concerns About Cost, Access, and Availability of Services The federal deficit and tight state budgets, coupled with the exponential growth in health care spending, particularly for both institutional and home and community-based LTC, have increased the general public 's and policymakers' desires to cut costs. As a result, policymakers have proposed solutions such as spending caps, block grants, limitations on provider fees and new nursing facility beds, and case management or gatekeeper systems. Importantly, almost every new federal or state proposal for Medicare and Medicaid has called for the increased use of managed care in an effort to decrease costs. The growth—both actual and potential—in the use of managed care for Medicare and Medicaid beneficiaries is dramatic. Although only 2.6 million Medicare beneficiaries are currently enrolled in the managed care risk contract program—about 7 percent of the total Medicare population—the rate of increase in the number of beneficiaries in these programs has averaged 23 percent over the past two years, and preliminary data suggest a growth rate approaching 30 percent in 1995 (GAO, 1995b). The potential for future growth is even greater; three-fourths of all Medicare beneficiaries now live in areas where they could enroll in a risk contract health maintenance organization (GAO, 1995b). Medicaid managed care programs have experienced similar growth; from June 1993 to June 1994, enrollment jumped 57 percent to 7.6 million recipients (Lewin-VHI, 1995b). States vary significantly in how many of their Medicaid beneficiaries are enrolled in managed care and what type of managed care they offer. In 1994, only three states (Arizona, Tennessee, and Oregon) paid a significant percentage of their Medicaid expenditures in capitation (Lewin-VHI, 1995b).

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings This new and rapidly growing reliance on managed care for Medicare and Medicaid populations presents both opportunities for improvement in the delivery of care and dangers of a decrease in quality. On the one hand, some claim that such plans have the theoretical potential to enhance quality by better coordinating and monitoring the care a consumer receives. In some instances, managed care systems can offer more services than do regular fee-for-service arrangements; notable examples include the Social Health Maintenance Organization and Program for All-Inclusive Care for the Elderly demonstration programs (IOM, 1995). On the other hand, managed care also gives providers clear financial incentives to underserve and to limit the amount of care consumers receive. Shaughnessy and colleagues (1994), for example, compared home health services in fee-for-service and capitated environments and found patient outcomes were significantly better for fee-for-service recipients. The difference appeared to occur mostly as a result of capitated organizations' limitation on the number of home health visits. Additionally, few managed care organizations have experience in providing LTC services to older and disabled individuals (Lewin-VHI, 1995a). In part this has occurred as a result of legislation that specifically excludes these populations from managed care programs, as is often found in enabling legislation for state waiver programs. The reluctance of managed care organizations to market heavily to this service-dependent and high resource-utilizing population has also been given as a possible reason. Managed care also has a philosophical orientation that presents difficulties when applied to LTC. Although the advent of managed care has helped to switch the emphasis of the health care system away from acute care hospitals toward a delivery system centered on primary care physicians, yet another shift will be required to create a system that is consumer centered and home and community oriented (Shortell et al., 1994). With or without managed care, the desire to cut or contain costs will pose several problems. According to Families USA (1994), these trends are likely to increase the number of consumers who are denied access to services through more stringent eligibility requirements; who must be placed on already long waiting lists to receive what services are available; and who must do the best they can with the limited range of services that are currently available. Increase in Service Delivery Experimentation Increasingly, LTC is being provided in individuals' homes and communities rather than in institutions such as hospitals and nursing facilities (Bishop and Skwara, 1993). Certainly the desire to limit the skyrocketing cost of institutional LTC has contributed to this change. Equally important, however, has been the

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings desire to deliver services in ways that acknowledge and respect consumers' preferences to remain in their own homes and communities as long as possible. The availability of affordable home care has provided an immeasurable increase in quality of life to many consumers and their families (Perrin et al., 1993). States have taken the lead in developing innovative home and community-based LTC service delivery systems. Most states have received approval from the Health Care Financing Administration to waive federal Medicaid requirements in order to experiment with new delivery systems designed to prevent at-risk individuals from being institutionalized (Folkemer, 1994). While the target population may vary, most programs share common characteristics in their focus on functional eligibility criteria, emphasis on service delivery in the least restrictive setting, and increased reliance on consumer input in the care planning process. In the absence of a federal LTC policy, it is expected that states will continue to try different approaches to meet the supportive service needs of individuals with disabilities. Some states have aggressively pursued reform of their LTC programs; others have done virtually nothing (CRS, 1993). This varied level of innovation and experimentation has led to an LTC delivery system in the United States that is patchwork on the national level and fragmented even within states. As a result, no single “LTC delivery system” exists today; rather, literally hundreds of systems proliferate at all levels of government. This trend will likely continue into the foreseeable future. Growing Concerns About Quality Very few systematic data exist regarding the extent or seriousness of quality problems in home and community-based LTC. Allegations and anecdotes abound. Most of the information that is available focuses on concerns with paraprofessional providers (Kane et al., 1991). Problems at the systems level such as fraud and abuse, ethical and liability issues, program inflexibility, and overregulation have also been noted (IOM, 1990, 1994, in press). Problems with the work force are commonplace and deeply affect the quality of care that is provided. Consumers complain about workers who arrive late and leave early or, worse yet, do not show up at all. Many workers have cultural or language differences that make it difficult to establish a good relationship with consumers. Some have not received appropriate training on how best to handle the patients in their care. For instance, many home care workers receive training on how to care for geriatric clients, but they may have no idea of how to care for a quadriplegic adolescent. Naturally, concerns remain about workers who physically or verbally abuse or steal from clients. For many consumers, staffing inconsistencies and high turnover pose the most problems; quality of care suffers when there is a constantly changing cast of workers who have to be trained and

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings oriented to the consumers' special needs (Perrin et al., 1993). This is especially true in residential care settings that depend heavily on outside contractors to provide personal care services (Kane and Wilson, 1993). Fraud or abuse detract from the quality of LTC services in a number of ways. Most directly, these losses mean that money that could be spent on care is not, thereby denying access to care for those in need. It also means that consumers may receive care from unlicensed or untrained staff. They might be billed for services they never received or might receive services they do not need (GAO, 1995a). Although the government has recently begun a major initiative—Operation Restore Trust—to curb these activities, fraud and abuse will likely continue to affect the quality of LTC adversely. Ethical and liability problems in home and community-based care are also of concern. How much risk should all the parties—consumers, providers, and payers—be allowed to assume? Should a provider be permitted to discharge or refuse to accept a consumer if, in the provider's view, the consumer needs more care than the consumer is willing to accept or is able to pay for? How should staff in a residential care setting deal with residents whose needs change beyond a level that can be accommodated? Parents of children and adolescents with disabilities describe problems with key transitions in family life such as school entry, adolescence, school graduation, or stressful times of family change (e.g., loss of a family member or change of employment). These are times when home and community care systems may need strengthening, yet home and community programs often lack the flexibility to change with changing family needs (Committee on Children with Disabilities, 1986). Finally, many consumers and their advocates worry that attempts to improve and protect consumers' health and safety may actually force a consumer to accept undesirable services. Many state and local governments, for example, have standards regarding admission and discharge of individuals in residential care settings. At the committee's workshop, participants heard testimony about a women who fell and broke her hip shortly after moving into a small group home for Alzheimer's patients. She was unable to walk and, therefore, was unable to get out on her own in an emergency. As a result, her husband was told by county regulators that his wife would be evicted and should be placed in a setting that could provide a higher level of care, such as a nursing facility. He fought the eviction—and won—because he was able to convince the judge that his wife would obtain better care in the group home where she would receive more one-on-one attention on a daily basis. Unlike the county regulators, he was willing to trade less protection for what he considered to be more desirable service overall.

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Best at Home: Assuring Quality Long-Term Care in Home and Community-Based Settings SUMMARY This chapter gave a brief overview of the current home and community-based LTC system and discussed some of the major trends that are influencing that system. In keeping with its overall charge, the committee now turns to an examination of the ways quality of care is assured and improved in that system.

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