Question

1. What are the main goals of community-based and institution-based long-term care services?.Answer should be one page long.

Answer 1

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 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.

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 settings 1 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 settings 2 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).

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 Services, or CHAMPUS) also provide funding for home and community-based LTCMedicare 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 percent of total LTC spending 3 (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.

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

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