The Role of Home and Community-Based Services in Meeting the Health Care Needs of People with AIDS: Literature Review


U.S. Department of Health and Human Services

The Role of Home and Community-Based Services in Meeting the Health Care Needs of People with AIDS: Literature Review

Executive Summary

Jennifer Schoff and Jennifer Schore

Mathematica Policy Research, Inc.

January 17, 1997

This report was prepared under contract #PHS-282-92-0044 between the U.S. Department of Health and Human Services (HHS) and Mathematica Policy Research, Inc. For additional information about the study, you may visit the DALTCP home page at or contact the ASPE Project Officer, Gavin Kennedy, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. His e-mail address is:

This report provides an overview of the literature describing the delivery and financing of home- and community-based services for people with AIDS, focusing on the literature of the past five years. Its primary conclusions are:

  • The need for publicly funded home- and community-based services is likely to increase as the number of people grows who have low incomes and multiple problems (such as drug abuse, homelessness, and serious mental illness) in addition to AIDS.

  • Promising new treatments for AIDS may change the mix of home- and community-based services required, increasing the need for assistance with complex medication regimens for people with AIDS who may have few functional limitations.

  • Data to support key home- and community-based service program design decisions are extremely limited.

Since the start of the epidemic, the AIDS population has been decreasingly made up of white, relatively affluent, and well-educated men who have sex with men and increasingly made up of people of color with low incomes and less education. AIDS transmission among these newer population members has been increasingly through injection drug use, sexual contact for women who are partners of injection drug users, and transmission by infected women to their unborn children (Centers for Disease Control and Prevention 1995a; and 1996b). The AIDS population also includes increasing numbers of people without homes and people who have severe mental illness (Institute of Medicine 1994). Historically, vulnerable groups of people such as these, like frail elderly people, have had difficulty gaining access to the fragmented home- and community-based medical and support service systems.

New AIDS treatments combining protease inhibitors and other antiretroviral medications may increase life expectancy among some people diagnosed with AIDS. For people who take these medications, as well as older medications such as AZT, AIDS becomes a chronic, infectious illness rather than an acute and fatal disease. Because these medications reduce viral load but do not cure AIDS, they must be taken in perpetuity (or until a cure is discovered).

Treatment with protease inhibitors is expensive. Estimates of the cost of protease inhibitor-combination therapy range from $9,000 to $18,000 per person per year (American Public Health Association 1996; and Bartlett and Moore 1996). These costs do not include other medications to prevent or treat AIDS-related illnesses (for example, PCP prophylaxis or antimicrobial and antifungal medications). Currently, up to two-thirds of all antiretroviral medications are paid for publicly by Medicaid or Ryan White-funded AIDS Drug Assistance Programs (American Public Health Association 1996). The high cost of protease inhibitors raises questions about how to sustain public funding for these medications as the number of poor people with AIDS increases. In addition to being costly, protease inhibitors are ineffective without complete adherence to the dosing regimen. Thus, questions arise as to how best to ensure adherence, particularly among users who may lack sufficient motivation or resources to adhere completely. As a result, monitoring medication adherence may be seen as part of medication costs for some users.

The lifetime costs of AIDS treatment has been increasing. Even before the introduction of protease inhibitors, pharmaceutical treatments for AIDS were beginning to increase life expectancy; this, in turn, increased the lifetime costs of AIDS care. For example, in the mid-1980s, the average length of time between an AIDS diagnosis and death was about a year and costs during that period were estimated to be $33,000 (Hiatt et al. 1990), compared with life expectancy of just over two years and costs of $69,000 in 1992 (Hellinger 1993). Increased life expectancy among people with AIDS often is associated with some level of intermittent disability (for example, due to chronic acute bouts of infection or the debilitating side effects of AIDS medications) or ongoing disability (for example, due to dementia, wasting, or cancer).

People with AIDS who experience either intermittent or ongoing periods of disability require nursing and support services to complement medical care. These services include assistance with daily living activities (and child care, if the person has children), transportation to medical care, help applying for public assistance, assistance with finding housing adequate to support good AIDS self-care (if the person is homeless or has subadequate housing), and help returning to work if the person becomes well enough to work. People with AIDS who are also injection drug users or have serious mental illness will need behavioral therapies (such as drug treatment or mental health services) that are not always covered by Medicaid or other public programs. Long-term services also may include interventions to ensure adherence to medication regimens (such as ongoing monitoring or direct observation of treatment).

The increasing number of people with AIDS with low incomes has implications for the public burden of primary medical care, nursing care, and support services. The primary burden of these costs has fallen to Medicaid (and, to a lesser extent, to Ryan White CARE Act funding) and may be expected to continue to do so. A primary mechanism for Medicaid programs to cover home- and community-based support services has been the "2176 Waiver" program. However, states have expressed frustration over the complexity of the waiver application process and over the difficulty of demonstrating the cost neutrality of additional service provision. Thus, this mechanism may be underused.

Medicare has borne a relatively small proportion of the burden for AIDS care, but this burden may increase. As people with AIDS live longer, those with some work history will become eligible for Medicare. Although Medicare primarily covers acute and primary care, rather than long-term care, Medicare home health care increasingly has been providing ongoing care to homebound beneficiaries. The fact that Medicare does not cover support services, that it may soon change its financing of home health to reduce use, and that it largely fails to cover pharmaceuticals will pose problems for people with AIDS whose only insurance is Medicare.

In summary, increasing proportions of people with AIDS who are poor or homeless and have multiple diagnoses (AIDS plus substance abuse and/or serious mental illness) will increase the public burden for home- and community-based services for people with AIDS and expand the range of services required. However, improvement in pharmaceutical treatment of AIDS may offset this increase to the extent that people treated successfully may not need home- and community-based services. They may, however, require ongoing assistance with purchasing medications and adhering to medication regimens.

Rigorous evaluation of programs that provide home- and community-based services to people with AIDS appears to be lacking. For this review, we identified assessments of five programs that provided or linked to home- and community-based services. These assessments consisted primarily of process analyses and tabulations of participant characteristics and service use. Of the five programs, two were Medicaid waiver programs (Florida and New Jersey), one was a Medicaid managed care program (Massachusetts), one was a hospital-based case management program (Newark and Jersey City, New Jersey), and one was an AIDS service organization with a formal case management component (Atlanta). Each program provided case management, although some used nurses as case managers, while others used social workers. Programs that used nurses as case managers primarily coordinated nursing-related services. All programs received public funding from either Medicaid or the Ryan White CARE Act. Programs that carried out participant satisfaction surveys reported participants satisfied with service provision. Differences in the goals of and record keeping for these programs made it difficult to compare participant characteristics or service use across programs. Two assessments (New Jersey and Massachusetts) compared program participants with other people with AIDS or disabilities and concluded that participant costs were lower, but neither assessment controlled adequately for key differences between participants and comparison group members.

The literature provided little data describing current levels of use of and cost for home- and community-based services by people with AIDS. In describing the New Jersey waiver program, Merzel et al. (1992) provide some insights into service use in 1987 and 1988. They note that waiver program participants used case management services extensively, but that only a fifth used other home- and community-based services (most commonly, private-duty nursing). Waiver service costs made up just 16 percent of total Medicaid spending for New Jersey waiver program participants during those years. Hellinger (1993) notes, on the basis data from the 1992 AIDS Cost and Service Utilization survey, that home health and long-term care made up about six and two percent of total monthly health care spending, respectively, for people with AIDS. He provided no information about what services made up long-term care. The Merzel and Hellinger studies are now between 5 and 10 years old. The literature presented us with no rigorous evaluation of the effectiveness of home- and community-based services in reducing inpatient hospital or overall costs, nor did it provide any estimates of the extent of unmet need for services. These information gaps will make it more difficult to design new programs.

We also found little information about how effectively managed care is meeting the need of people with AIDS for home- and community-based services. This lack of information is primarily due to the fact that most Medicaid managed care programs either do not serve people with disabilities and chronic illnesses (such as AIDS) or do not cover long-term care (instead, leaving long-term care in the fee-for-service sector). The experiences of private managed care organizations in caring for people with AIDS is not well documented.

As a result of these gaps in the AIDS literature, we turn to the relatively well-developed literature evaluating home- and community-based service programs for elderly people who are frail or have chronic illness. This literature provides the following lessons for designing such programs for people with AIDS:

  • It is very difficult to identify groups of individuals for whom the provision of home- and community-based services can reduce the use of hospital or nursing home care and thereby reduce overall spending. This suggests that programs that have a primary goal of reducing overall spending (1) should only be undertaken with well-developed targeting procedures, to ensure that participants will have had high costs in the absence of the program; and (2) should only provide services for which some evidence exists that they can reduce hospital or nursing home use for people with AIDS. Indeed, cost savings may not be a realistic primary goal for such programs.

  • Although managed care for frail elderly people has the potential to better coordinate medical care with home- and community-based services, this potential has yet to be fully realized. The evaluation of the Health Care Financing Administration's Social/Health Maintenance Organization demonstration underscores the fact that co-locating medical providers and long-term care case managers is not sufficient to ensure communication between the two groups and well-integrated service provision (Harrington et al. 1993). Demonstrations that integrate medical and home- and community-based care for frail elderly people using a managed care approach continue, including the Program of All-Inclusive Care for the Elderly and the second generation of Social/Health Maintenance Organizations.

Short-term research efforts concerning the delivery of home- and community-based services to people with AIDS should focus on developing information about the need for and use and cost of services. The current literature lacks much of the basic information that usually supports program design activities: setting program goals and identifying a target population, designating covered services and best practices for their delivery, developing a payment mechanism, and identifying participant outcomes and other measures to monitor program quality.

The changing face of the AIDS population is likely to have a profound effect on service needs. In addition to building on our current and past experiences, programs that deliver and finance home- and community-based services for people with AIDS in the future will have to take into account the fact that service delivery to people who are homeless or otherwise have chaotic lives is likely to differ dramatically from service delivery to men who have sex with men and have AIDS or to frail elderly people. Fundamental questions arise as to what it means to deliver home- and community-based services to someone with no home and what it means to manage the care of people whose lives are so chaotic that health care is not their primary concern, even though they are very ill. Drug treatment, assisted or supportive living, adult day health, and housing assistance are likely to play bigger roles in the delivery of home- and community-based services to the AIDS population of the future.