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


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: Final Report

Executive Summary

Jennifer Schore, Mary Harrington, and Stephen Crystal

Mathematica Policy Research, Inc.

March 1998

This report was prepared under contract #PHS-282-92-0044 between HHS's Office of the Assistant Secretary for Planning and Evaluation, Office of Disability, Aging and Long-Term Care Policy 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:

The opinions and views expressed in this report are those of the authors. They do not necessarily reflect the views of the Department of Health and Human Services, the contractor or any other funding organization.

In the early 1980s, when acquired immunodeficiency syndrome (AIDS) made its first appearance, it was an unfailingly acute and fatal disease. Since then, AIDS-specific medical expertise and treatment advances have increased life expectancy for people with AIDS and human immunodeficiency virus (HIV) and shifted AIDS treatment from an acute- to a chronic-care model. Home- and community-based services, such as assistance with daily living activities and the provision of home-delivered meals, have long been an integral part of AIDS care. However, improved health and functioning have broadened the scope of these services to include, for example, assistance returning to work and caring for families.

This is the final report for the project, "The Role of Home- and Community-Based Services in Meeting the Health Care Needs of People with AIDS," conducted by Mathematica Policy Research, Inc. (MPR) for the U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation (ASPE). The goal of the project was to assist ASPE in developing a research agenda for studying home- and community-based service use among people with AIDS. The project had three components: (1) a review of the recent literature describing the delivery and financing of home- and community-based services for people with AIDS; (2) case studies of service provision in New York City and Los Angeles; and (3) an analysis of use and reimbursement patterns for New Jersey Medicaid beneficiaries with AIDS (conducted by the AIDS Research Group of the Institute for Health, Health Care Policy, and Aging Research at Rutgers University).

The Evolution of the AIDS Epidemic and Its Financing

In the early days of the epidemic, the typical person with AIDS was recognized as a white man who had contracted HIV through sexual contact with another man. However, the epidemic has increasingly and disproportionately affected women and people who belong to racial or ethnic minorities, and the mode of transmission has increasingly 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, in 1996, 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. Increased life expectancy has increased the duration of needed services. Improved treatment has also improved health and decreased levels of functional impairment for many people, which in turn appears to have led to a decrease in their use of traditional home- and community-based services (such as home-delivered meals and personal care). At the same time, this treatment has led to an greater need for other types of support, such as assistance with treatment adherence and return to work. Meanwhile, the increased incidence of AIDS among people with low incomes, people with substance abuse problems, and women with families has led to an increased need for home- and community-based service providers to interact more often and intensively with 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 increase of AIDS among people with low incomes has placed an increasing burden on the Medicaid (and Ryan White) programs, particularly to fund costly protease combination therapy. The programs also face the challenges of reconsidering eligibility and service coverage criteria to reduce disincentives to work and to increase flexibility in meeting chronic care needs, which typically vary over time in intensity and type.

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, because many states exclude from managed care people with disabilities or chronic illnesses like AIDS. In addition, although Medicaid covers many of the home- and community-based services that people with AIDS need, many Medicaid managed care plans currently exclude these services from capitation arrangements. As a result, little is known about how best to provide the full range of AIDS services in a managed care environment. Increased use of Medicaid managed care also raises questions about whether and how to integrate services currently provided with Ryan White funds to Medicaid beneficiaries who enter managed care.

Lessons from the Front Lines

The project developed case studies to describe current provider approaches to delivering home- and community-based services to a changing AIDS population. The case studies were based on discussions at six large, well-established AIDS providers in Los Angeles and New York City, supplemented by telephone conversations with a small number of Medicaid and Ryan White staff. The New York providers were Gay Men's Health Crisis, the oldest and largest AIDS service organization in the United States; the Visiting Nurse Service of New York, a large, not-for-profit home health agency with a 10-year-old AIDS program; and Village Center for Care, a continuum of AIDS-specific home care, day treatment, case management, and nursing home care. The Los Angeles providers were AIDS Project LA, the second-largest AIDS service organization in the United States; AIDS Healthcare Foundation, an AIDS-specific freestanding outpatient medical provider that operates a Medicaid managed care plan for people with AIDS; and AltaMed Health Services Corporation, a community health center with an HIV/AIDS program that targets the Latino community. In-person discussions with key program staff took place in spring 1997.

Service providers reported that they are changing both the types of services offered and their service delivery approaches in response to growing numbers of disadvantaged clients who are living longer, healthier lives. Providers have found that service delivery models that worked well for earlier clients (namely, end-of-life care for affluent, well-educated gay men) must be modified for newer clients with longer-term and more complex problems (for example, behavioral comorbidities, lifelong poverty, and families also in need of support) and often tenuous informal support systems. Provider response has included broadening the range of services provided in house, increasing referrals to and interactions with providers in other systems, reconfiguring staffing to include more trained professionals and fewer lay staff and volunteers, and developing procedures to provide the most intense services to the clients with the most complex problems. These costly changes have been simultaneous with decreases in private donations and increased pressure to control Medicaid costs.

Only one case study provider had had substantial direct experience with managed care. Nevertheless, all the providers saw Medicaid managed care for their clients just over the horizon and were concerned that many questions about managed care for people with AIDS had not yet been answered: how to set payment rates and manage financial risk in a way that will promote quality medical care (that is, provide specialty care and state-of-the-art treatments); and whether and how to include under capitation home- and community-based care such as that now provided through Medicaid waivers and Ryan White. Providers were concerned that rational planning decisions would be difficult to make because of the scarcity of data on (1) current patterns of service use among different groups of people with AIDS, and (2) the cost-effectiveness of different types of home- and community-based services.

The project also sought information about the feasibility of using provider databases in future research efforts. The case study providers each maintained databases with the capacity to provide detailed sociodemographic and clinical data describing their clients, as well as data describing service use. However, providers noted that while databases contained fields for client characteristics, the fields were frequently not filled in. Providers stated their willingness to consider the inclusion of their databases in future research projects. However, formal permission to gain access to them must be requested and received and data from them examined for completeness and consistency before a research study can be undertaken.

Lessons from the New Jersey Medicaid AIDS Waiver Program

The New Jersey Medicaid waiver program provided an important opportunity to study home- and community-based services for people with AIDS, for several reasons. First, the nation's AIDS population is evolving to look more like New Jersey's. In the early 1990s, of the state's AIDS population nearly one-fourth were females, more than two-thirds were nonwhites, and over half were injection drug users. Second, New Jersey has always emphasized home care in its AIDS services and policies. In 1987 its Medicaid program developed the nation's first home- and community-based service waiver for people with AIDS. Finally, the state has supported the development of a longitudinal research database that links Medicaid claims and AIDS registry data, facilitating analyses of AIDS service use among Medicaid beneficiaries. The portion of the database used for this report included 2,464 people who became eligible for Medicaid between August 1989 and July 1991 and who were diagnosed with AIDS by June 1992. The database describes their service use through June 1994. Of those 2,464 beneficiaries, complete diagnosis-to-death claims data were available for 1,293; this "completely observed" sample was the primary focus of the analysis.

About a third of the 1,293 beneficiaries voluntarily participated in the case-managed AIDS waiver program; the remainder were eligible for more limited home care under the regular Medicaid program. Program eligibility criteria include the need for a nursing home-level of care and either categorical Medicaid eligibility or financial eligibility if the beneficiary were institutionalized. Waiver participants were more likely than nonparticipants to be whites or males but less likely to be injection drug users. Only 20 percent of nonparticipants were whites, 60 percent were males, and 74 percent were injection drug users, as compared with 37, 75, and 62 percent of waiver program participants, respectively. Differences between waiver participants and nonparticipants may have been related to the waiver program's higher income cutoff.

Among nonparticipants, there were substantial disparities among beneficiaries from different racial groups and from transmission risk groups in the use of home care: whites were more likely than blacks, and injection drug users less likely than nonusers, to use home care. These large disparities were not evident among waiver participants. While it is difficult to separate the effects of the ability of the waiver program to improve access to care and the program's self-selection on the findings, they do suggest that case management may hold promise for improving access to home care for groups who make up increasing proportions of the AIDS population.

Planning and Policy Implications

The challenges providers, planners, and policymakers face in the wake of a changing AIDS population and service environment have implications in three areas: (1) development of databases and other types of information to support planning decisions; (2) development of concrete strategies to implement managed care for people with AIDS; and (3) development of a cohesive approach to meeting the needs of people with all types of chronic illness.

In an environment that focuses increasingly on cost control, program planners and policymakers require information to aid in decision making about the provision of home- and community-based services to people with AIDS.

Two broad types of information are needed. The first is basic description of service use and of costs and variations in them over time, by geographic region, and by funding source. Service use and cost patterns should also differentiate among groups of people with AIDS who may be expected to have different use patterns (for example, as defined by HIV risk group, gender, minority status, disease stage, use of particular pharmaceutical treatments, presence of behavioral comorbidities, homelessness, or existence of family affected by HIV). Whereas basic information about service use patterns is sorely needed, more sophisticated analyses--which offer evidence that a particular program, approach, or financing mechanism provides care more cost-effectively--would further rationalize decision making for future programs.

Practice guidelines for home- and community-based services represent a second type of information whose development bears further consideration. Practice guidelines, such as those now widely used in home health care, could clarify the goals and tasks of home- and community-based services (often criticized for their amorphousness). Case management in particular has been faulted for its profusion among people with AIDS, and guidelines could be one part of a strategy to reduce redundancy in case management and help it coordinate services across systems more effectively.

While managed care holds the potential to better coordinate acute care and home- and communitybased services for people with AIDS, its implementation faces challenges beyond those posed by the information gaps just described.

Managed care planners face now well-known challenges in addressing the special medical care needs of people with AIDS: developing both risk management strategies that offer plans incentives to enroll people at risk of high costs and mechanisms to assure high-quality AIDS treatment. However, planners face additional challenges in addressing the needs of people with AIDS for home- and community-based services. If managed care planners decide to include these services under capitation payments, fundamental questions exist as to how to implement and integrate them. For example, who should coordinate and oversee their use: medical or social services providers? Small, neighborhood-based or larger, more comprehensive providers? These and other questions of implementation remain because most of the few managed care plans now serving substantial numbers of people with AIDS currently carve out home- and community-based support services. Even less is known about whether and how to integrate Ryan White funding and services under managed care. This suggests that demonstrations of managed care for people with AIDS must begin to integrate home- and community-based services with medical care.

The problems we face in figuring out whether and how AIDS-specific home- and community-based services should be included in managed care (or in ongoing fee-for-service programs facing costcontrol pressures) are merely special cases of general problems reflecting the need for a cohesive policy to address the needs of people with all types of chronic illnesses.

The health care and support service systems for people with chronic illnesses need to be flexible enough (1) to permit people to vary the intensity with which they receive services in those systems as their needs change over time, and (2) to minimize incentives to provide care at inappropriate levels. The current Medicaid and Medicare systems include perverse incentives that run counter to these goals. In addition, as the number of people with AIDS who are covered by Medicare (but not Medicaid) increases, the funding of support services and medications (not currently covered under Medicare) will be a particular problem, as it is now for all Medicare beneficiaries (and most privately insured individuals) with severe chronic illnesses. Public programs funding medical and support services must also give people with chronic illnesses the flexibility to return to work when they are well enough without jeopardizing access to the very services that make them healthy enough to work. This is a particular dilemma for people with AIDS who are successfully taking protease inhibitors funded by Medicaid or Ryan White.

In addition to providing general assistance with daily living activities or AIDS-specific assistance such as help with adherence to treatment regimens, support services for poor people with chronic illnesses, including AIDS, must mesh more closely with public assistance, family services, and housing providers, because subsistence needs must be met before health and traditional support services can be put in place. Similarly, support services for people with chronic illnesses and behavioral problems must work more closely with mental health and substance abuse treatment providers.

The similarities of the needs of disadvantaged people with AIDS to those of disadvantaged people with other types of chronic illnesses raises a question of equitability in support services funding. The Ryan White program has demonstrated that important service and funding gaps had to be filled for poor people with AIDS. These gaps almost surely exist for all poor people with severe chronic illnesses.

Research Agenda Recommendations

The need for (1) data describing the use and effectiveness of home- and community-based services for people with AIDS, (2) managed care approaches that integrate home- and community-based services for people with AIDS, and (3) a cohesive national chronic-care policy give rise to the following research agenda recommendations:

Database Development. There is a clear need both for large representative databases that can provide timely descriptions of home- and community-based service use among different groups of people with AIDS and for focused data collection to identify and evaluate promising interventions. Large administrative databases are representative and comprehensive, but they lack much data describing individual characteristics and suffer from processing lags that keep them from being as timely as desirable. Provider databases have the potential to add characteristics data and to be more timely, but they describe highly specific populations. Reports concerning the rates at which characteristics data are missing from provider databases lessen their appeal. Nevertheless, research efforts should focus on examining the feasibility of developing combined administrative databases and of using provider data to supplement them.

Practice Guideline and Quality Indicator Development. Although their use is now becoming accepted practice in home health care, practice guidelines and quality indicators have not been used widely for other home- and community-based services. Although provider databases could be useful in developing benchmarks and testing specific approaches, development of guidelines and quality indicators usually relies on panels of experts and consumers. Research efforts should investigate the feasibility of developing such guidelines and indicators. A first step in this effort might include a review of the literature to identify any that already exist, followed by a meeting of experts and consumers to discuss the desirability of developing (or refining) them for specific services (for example, case management or treatment adherence assistance).

Identification of Evaluable Interventions. In the course of its six case study visits, this project identified a number of interventions that could be considered for formal evaluation. However, a more focused approach could be taken to identifying interventions through the release of a request for proposals disseminated widely to AIDS providers. To encourage as many responses as possible by burdening providers as little as possible, the request process could follow a "foundation approach" in which (1) providers were asked to submit two-page letters describing their ideas, (2) a panel reviewed the letters, and (3) selected providers were then asked to submit longer proposals.

Development of Managed Care Demonstrations That Include Home- and Community-Based Services. AIDS-specific demonstrations are needed that include under capitation home- and community-based services (such as those covered under regular Medicaid benefits, Medicaid waivers, and Ryan White funding) in order to fill knowledge gaps about whether and how such arrangements may best be implemented. Such demonstration efforts face a number of nontrivial challenges, including identifying appropriate host organizations, gathering a full range of service providers, and setting payment rates. In addition, any such demonstration should require the collection of encounter data to describe patterns of service use under capitation. Similarly, thought should be given to the design of a Medicare demonstration that provides beneficiaries with AIDS (who do not also have Medicaid) coverage of pharmaceuticals and support services.

Investigation of Return-to-Work Regulations. Although the Supplemental Security Income program contains regulations that provide for the continuation of public benefits for people working with a "severe impairment," it is not clear whether or how these regulations apply to people with AIDS who are being treated successfully with protease or some other therapy. Because AIDS medications are so costly, and thus the disincentive to work particularly strong, this area deserves further investigation and may suggest the need to revise existing regulations to reduce the work disincentives.

Development of Approaches to Better Link AIDS Services to Other Systems. The level of contact between AIDS service providers and providers and entities in other systems--substance abuse treatment, mental health, family services, and public assistance--has increased greatly in recent years, primarily through increased referrals between systems. Yet AIDS providers in our case studies stated that there was not enough sharing of basic knowledge, particularly between AIDS providers and those in the substance abuse treatment and mental health systems. Coordination of efforts between these systems would be particularly important in developing strategies to help people with substance abuse problems or mental illness to adhere to AIDS treatment regimens. Research efforts should thus develop approaches for sharing knowledge and pooling resources between AIDS service providers and those in other systems that serve large numbers of people with AIDS.


As AIDS increasingly becomes a disease of disadvantaged people, medical treatment and health-related support services begin to blend with traditional public assistance programs such as food stamps and housing assistance. Moreover, any changes in service delivery that result from changes in welfare or immigration policy will affect more directly an AIDS population growing poorer. As AIDS increasingly becomes a chronic, rather than an acute and fatal disease, its management resembles more closely that of other serious chronic conditions. Key challenges in developing costeffective models of chronic-disease management include figuring out how to help people take responsibility for their health (adhere to treatment regimens, maintain good self-care practices, and monitor and report symptoms) 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 supportive living, interventions with families, assistance returning to work, and help locating safe and secure housing--all may have to play a bigger role in the delivery of home- and community-based services for newer AIDS populations than they did for gay men earlier in the epidemic.

The Full Report is also available from the DALTCP website ( or directly at