Performance Improvement 1999. The Role of Home and Community-Based Services in Meeting the Health Care Needs of People with HIV/AIDS


In the early 1980s, when AIDS first appeared, it was an unfailingly acute and fatal disease. Although the disease remains fatal, advances in AIDS-specific medical expertise and treatment have increased life expectancy for people with HIV and AIDS. As a result, AIDS treatment has shifted from an acute- to a chronic-care model. These changes have broadened the need for different types of home- and community-based services to help people with AIDS lead longer and fuller lives. Services such as assistance with daily living activities and the provision of home-delivered meals have long been an integral part of AIDS care. Because of improved health and functioning, however, people with AIDS now need help with activities such as adhering to complex treatment regimens, returning to work, and caring for families.

In identifying the challenges health care providers, planners, and policymakers face in dealing with the changing epidemic, the study noted a need for: (1) better information about service use and costs to deal with an environment increasingly dominated by cost control, (2) concrete strategies for implementing managed care for people with AIDS, and (3) a cohesive policy that addresses the health care needs of people with all types of chronic illnesses.

The purpose of this project was to identify the policy implications for a changing AIDS population, and to set the groundwork for studying the current status and future of home- and community-based service use among people with AIDS. The project examined current service delivery environments to identify problems and assess where the gaps are or where they may be in the future.

In the early days of the epidemic, the typical person with AIDS was a white man who had contracted HIV through sexual contact with another man. However, the epidemic has increasingly and disproportionately affected women and people from racial or ethnic minority groups. More and more, the mode of transmission for the disease has been injection drug use. Meanwhile, improved medical care and pharmaceutical treatment have extended the lives and improved the health of many people with AIDS, leading in1996 to the first decline in deaths since the start of the epidemic.

Changes in AIDS treatment and in the characteristics of the AIDS population have had profound and interrelated effects on the use of home- and community-based services by people with AIDS. Longer life expectancies mean that people use needed services for a longer time. Enhanced treatment has also improved health and decreased levels of functional impairment for many people, which in turn has led to a decrease in their use of such traditional home-and community-based services as home-delivered meals and personal care. At the same time, better treatment has boosted the need for other types of support, such as assistance with adhering to complex treatment plans and returning to work. Meanwhile, the increased incidence of AIDS among people with low incomes, people with substance abuse problems, and women and families has amplified the need for greater interactions between home- and community-based service providers and substance abuse treatment, mental health, family services, and public assistance systems. Medicaid, Medicare, and the Ryan White Comprehensive AIDS Resources Emergency Act have been the major public funding sources for HIV/AIDS care during the 1990s. Although 1995 Medicaid spending for AIDS care was only about two percent of total Medicaid spending, the spread of AIDS among low-income people has placed a growing burden on both the Medicaid and Ryan White programs, most recently to fund costly protease combination therapy. As the epidemic changes, these programs must also reconsider their eligibility and service coverage criteria, to reduce disincentives to work and increase flexibility in meeting chronic care needs, which typically vary in intensity and type over time.

Public programs have sought ways to increase access to home care for beneficiaries with chronic conditions that put them at risk of institutionalization. For example, Medicaid programs have used Home- and Community-Based Service waivers allowed under Section 1915© of the Social Security Act. The recent trend among Medicaid programs to rein in escalating costs by enrolling beneficiaries in managed care plans has had, to date, only a modest effect on people with AIDS. Many states exclude individuals with disabilities or chronic illnesses--like AIDS--from managed care. In addition, although Medicaid covers many of the home- and community-based services that people with AIDS need, most Medicaid managed care plans exclude these services from capitation arrangements. As a result, little is known about how best to provide the full range of AIDS-related services in a managed care environment. The spread of Medicaid managed care also raises questions about whether and how to integrate services currently provided with Ryan White funds for Medicaid beneficiaries who enter managed care.

This study involved three components, including: (1) a review of home and community-based services literature with a particular focus on financing and service delivery of care to persons with AIDS, (2) case studies of six programs that deliver home and community-based care to persons with HIV/AIDS in New York and Los Angeles, and (3) an examination of the use and cost of Medicaid home and community-based services for participants in New Jersey Medicaid and New Jersey's home and community-based Medicaid waiver program.

The project developed case studies to describe current provider approaches to delivering home- and community-based services to people with AIDS. The case studies were based on in-person discussions with staff at six large and well-established service providers in Los Angeles and New York City and were supplemented by telephone conversations with state Medicaid and Ryan White CARE Act representatives. Criteria for selection included history, size, financing, service delivery system, and primary population served, among others. In Los Angeles, the case studies examined AIDS Project LA, the second largest AIDS service organization in the US; the AIDS Health Care Foundation, which operates a Medicaid managed care system for persons with AIDS; and the Altamed Health Services Corporation- a community health center that targets the Latino community. In New York, case studies examined the Gay Men's Health Crisis, the oldest and largest AIDS service provider in New York; the Visiting Nurse Services of New York-a large, for-profit home health agency; and Village Center for Care, which provides AIDS-specific home care, day treatment, case management and in-home nursing care.

The study also included a secondary data analysis of the use and reimbursement patterns among AIDS patients in the New Jersey Medicaid Waiver program. New Jersey was selected because it closely mirrors the demographics of the nation's AIDS population, i.e. one-fourth of the population is female, two-thirds are non-white, and half are injection drug users. New Jersey also emphasizes home-based care and developed the nation's first home- and community-based service waiver for people with AIDS. In addition, the State supports the development of a longitudinal research database which links Medicaid claims with AIDS registry data. The initial sample selected for this study included 2,464 people who became Medicaid-eligible between 1989 and 1991 and were diagnosed with AIDS in 1992. Of this population, complete data were available for 1,293 persons, which formed the sub-sample population for this study. Thirty-three percent of the 1,293 participated in the waiver program known as the AIDS Community Care Alternatives Program (ACCAP), while the majority, consisting of more women, blacks, injection drug users, and people who lived close to New York City, were non-waiver participants.

The literature points to the increasing incidence of AIDS among people who must rely on multiple public programs for medical care and support services, and the growth of managed care in the public sector as serious challenges to planners who must decide how to finance and deliver health-related services for people with AIDS. Advances in AIDS treatment (i.e., combination drug therapy) that are costly and difficult to adhere to under the best living conditions compound these challenges.

The case studies spotlighted the need for providers to adapt the types of services they offer and their service delivery approaches in response to growing numbers of disadvantaged clients who are living longer, healthier lives as a result of improved AIDS treatment. Provider response to increasing numbers of multi-problem clients has included broadening the range of services they provide in-house, increasing referrals to and interactions with providers in other systems (mental health, substance abuse treatment, housing, and public assistance), reconfiguring staffing to include more trained professionals and fewer lay staff and volunteers, and developing procedures to identify clients with the most complex problems for the most intense services. While very few providers in this study had direct experience with managed care, they see it as inevitable and are concerned that many questions about managed care for persons with AIDS have not yet been answered.

An additional part of this study compared home care use and costs for participants in New Jersey's AIDS waiver program with those for Medicaid beneficiaries with AIDS who received home care under regular Medicaid between 1988 and 1996. The analysis suggested that the waiver program's approach, which focused on case management, may have reduced existing disparities in home care use between beneficiaries from different racial/ethnic and transmission groups. For example, for beneficiaries receiving regular Medicaid services, there were statistically significant differences between blacks and whites and between injection drug users and nonusers. These differences did not exist for participants in the waiver program. The findings suggest that case-managed home care may be an important tool for increasing access to care in an increasingly diverse AIDS population.

Use of Results
This study suggests that as AIDS becomes a disease of the disadvantaged, medical treatment and health-related support services begin to blend with traditional public assistance programs, such as food stamps and housing assistance. Also, as AIDS increasingly becomes a chronic, rather than an acute and fatal disease, its management has come to resemble more closely that of other serious chronic conditions. This study suggests key policy challenges (and areas for future research) including the development of cost-effective models of chronic disease management that include figuring out ways people can take responsibility for their own health (adhere to treatment regimens, maintain good self-care practices, etc.) and how to provide them with the assistance and financial support they need to take this responsibility. Substance abuse treatment, mental health services, assisted or supported living, assistance with returning to work, and help locating housing all play a bigger role in the delivery of home and community-based services for newer AIDS populations than they did in earlier days of the epidemic.

AGENCY SPONSOR: Office of the Secretary, Office of the Assistant Secretary for Planning and Evaluation


PHONE NUMBER: 202-690-6443

PERFORMER ORGANIZATION: Mathematica Policy Research Inc., Plainsboro, NJ