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Programs That Work:
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Acknowledgements
This report could not have been produced without the contributions of the SPNS Cooperative Agreement Steering Committee members and others involved in its preparation (see the inside back cover for a list of Steering Committee members for 1995-1996). A subcommittee consisting of George J. Huba, Ph.D., Trudy A. Larson, M.D., and Barney Singer, J.D., guided the development of the original draft of the full report on which this document is based. This subcommittee prepared the full report at the request of the Cooperative Agreement Steering Committee at its September 1996 meeting in Chevy Chase, Maryland. George Huba and Lisa Melchior were responsible for collecting the recommendations of the subcommittee and the full Steering Committee into the final version of the report. The five Work Group chairs during the second year included David A. Cherin, Ph.D., Bernadette Lalonde, Ph.D., Karen Meredith, M.P.H., Anne Stanton, L.C.S.W., and Leslie R. Wolfe, Ph.D. The Work Group chairs also were instrumental in the development of the full report. At The Measurement Group, Lisa A. Melchior, Ph.D., Mark Summa, M.P.H., and George J. Huba, Ph.D. prepared this summary of the full report. Alyssa Leong supervised production.
INTRODUCTION
People with HIV/AIDS have special medical and social services needs that require comprehensive care strategies. Community-based, public health and private sector health and social services providers all over the United States have struggled over the past decade to develop systems of comprehensive care to meet the needs of people with HIV/AIDS.
This pamphlet summarizes the progress made by 27 programs funded as innovative models of care by the U. S. Department of Health and Human Services, Health Resources Services Administration. Acknowledgment to the staff and clients of these 27 programs is given, for without their active participation in program development the progress described would not have been possible.
Background and Funding:
On September 30, 1994, the Special Projects of National Significance (SPNS) Program of the Health Resources and Services Administration (HRSA) funded an HIV Innovative Model of Care Initiative consisting of 27 cooperative agreements, HRSA, and an Evaluation and Dissemination Center (EDC). The cooperative agreement funding mechanism was selected to encourage projects to identify shared goals and objectives; to enable projects to share technical expertise; and to establish a cross-cutting evaluation.
Five Strategies for Developing Comprehensive Care:
Project strategies were varied and included direct medical and psychosocial client services, client advocacy, and training on HIV-related issues. Many projects used a combination of these strategies. Five major strategic approaches emerged by the end of the first year and became the basis for the formation of five workgroups comprised of project staff. These five strategies are described in the following.
Capitated Care
Five of the SPNS Program projects share the study of health care provided to individuals with HIV disease under capitated care models. The projects differ in the ways that they provide health care, ranging from a community-based clinic (East Boston Neighborhood Health Center) to a large "chain" of community-based clinics (AIDS Healthcare Foundation) to a home-based hospice (Visiting Nurse Association of Los Angeles) to university-based clinics (Johns Hopkins University School of Medicine) to a state-wide system (New York State Department of Health/Health Research). Each project shares the goals of determining costs for providing health care services to HIV/AIDS patients under a capitated care system and of ensuring that high quality care is provided under such a system. As a group, the models and their implementation are quite different from one another; taken collectively, their experiences should serve to define those instances in which a capitated care system for the provision of HIV/AIDS-related services is appropriate and those conditions in which it is not.Community-Based Process
Six projects share the goal of providing high-quality care for individuals with HIV who belong to groups that are traditionally underserved because of linguistic, cultural, racial, and economic barriers to full integration into the traditional hospital-based service system. Outreach, Inc. has implemented a program targeting substance abusers, many of whom are African-Americans living in public housing projects. PROTOTYPES has implemented a "Settlement House model" providing care for women with HIV and their children. The Well-Being Institute has developed a three-tier program wherein substance abusing women with HIV are offered the opportunity to receive health, social and support services, an opportunity to participate in a 60-day drug treatment program and, after successful treatment, participation in a revenue-generating, entrepreneurial activity. The Center for Community Health, Education, and Research/Haitian Community AIDS Outreach Project provides culturally appropriate social services to individuals with HIV in the large Haitian community of greater Boston. The Fortune Society provides incarcerated Latinos with HIV educational programs, social support, and legal assistance services. Larkin Street Services has developed a comprehensive continuum of services for homeless youth living with HIV in San Francisco. Common to all of the CBO programs is the development of alternate models of care specifically targeted to individuals who have traditionally been underserved. In these models, services are provided by a combination of professional staff and "paraprofessional" or "recovering" staff who share many of the same demographic and experiential characteristics of the target clients.Comprehensive Healthcare
Three projects are developing specialized medical care models within the context of a continuum of services in a medical clinic. The University of Vermont & State Agricultural College has developed three community clinics throughout Vermont to assess a model of comprehensive HIV care in a rural area. The University of Nevada School of Medicine has added a nutrition component to its comprehensive AIDS care clinic and is studying the effects of adding nutrition assessment, objective measurements, counseling, and supplements to the treatment of wasting in AIDS patients. The Washington University project in St. Louis, Missouri is providing a continuum of care to women with HIV and their children within a traditional medical clinic model combined with aggressive community outreach and case management. The Washington University project serves a group of inner city women, most of whom are African-American.Infrastructure-Advocacy
Projects in the Infrastructure-Advocacy group aim to increase the capacity of local health and social support service systems to provide appropriate, quality services for individuals with HIV. These projects are attempting to change the service provider infrastructure as well as the community context in which these services are delivered. The Center for Women Policy Studies is increasing the ability of service providers in the metropolitan District of Columbia area to provide services to women with HIV through leadership development with HIV-positive women, policy change, and needs assessment. Health Initiatives for Youth has developed a technical assistance center to promote youth-appropriate HIV services. The Michigan Protection and Advocacy Service provides technical assistance to consumers and service providers regarding HIV legal issues in the areas of employment, confidentiality, health care, accessing social security, and public policy. The Indiana Community AIDS Action Network provides legal assistance to individual clients to redress discriminatory practices by health care providers, employers and others. The Hektoen Institute for Medical Research at the Cook County Hospital's HIV Primary Care Center/Women and Children HIV Program is increasing the ability of the service infrastructure to provide early identification and linkage into care of women with HIV by training maternal and child health providers. The State University of New York – Health Science Center at Brooklyn is developing systems to support and encourage women to be tested for HIV. The University of Texas Health Science Center at San Antonio provides training to service agencies and consumers to develop comprehensive care for women with HIV and their children. The Missouri Department of Health is systematically developing the capacity of Missouri's HIV/AIDS service providers and mental health agencies to provide services for individuals with multiple diagnoses of HIV/AIDS and mental illness and/or substance abuse.Training
While training is integral to almost all of these projects, seven have identified training among their most key elements. The University of Mississippi Medical Center has developed a training program targeting medical workers in rural settings who are not comfortable treating patients with AIDS. The University of Colorado Health Sciences Center has developed an eight-state program to compare different ways of providing medical information to health care providers. The Interamerican College of Physicians and Surgeons has developed a culturally appropriate training program for Hispanic physicians. The University of Washington has developed a training program in neuropsychiatric illness associated with HIV disease with an emphasis on delirium, and ways of developing greater expertise among practitioners. Emory University has instituted a training program for health care providers who provide HIV-related medical services to inmates in the Georgia State prison system. Health Initiatives for Youth has developed a training center for health care, social service, and other service providers to increase their capacity to provide services in an appropriate and sensitive way to youth and adolescents. The University of Texas Health Science Center at San Antonio is using training methods to develop a comprehensive continuum of services for women with HIV and their children.
Project Accomplishments:
- Improvement of HIV systems of care targeting specific minority persons with HIV.
- Development of "Storefront" community facilities for persons with HIV.
- Assessment of medical needs at different stages of HIV disease.
- Development of special facilities or programs for persons with late-stage AIDS.
- Development of a prison-based program.
- Implementation of innovative training of health and other service providers.
- Assessment of the costs and/or benefits of various types of treatment programs.
- Identification of the special needs of persons traditionally underserved in the health care system.
Project Barriers:
- Project staffing was complicated by institutional personnel regulations.
- Program development was hampered by lack of staff expertise in areas necessary for program transition.
- Lack of appropriate physical facilities hindered program development.
- Legislative and other institutional changes necessitated shifting program objectives, budgets, staffing, and other needs.
Collaborative Achievements:
As a collaborative, the 27 projects were represented by a steering committee that met four times during the second year of funding. At these meetings the following achievements were realized:
Refinement of Common Objectives such as:
- Development of common methods of calculating costs of services and identified barriers encountered in developing managed care services.
- Identification of ways to overcome barriers to services encountered by traditionally underserved groups.
- Development of methods for the implementation of comprehensive, AIDS care clinics.
- Identification of strategies for expanding the capacity and responsiveness of local HIV/AIDS service systems.
- Development of consensus positions about the importance of many program elements.
- Identification of special population issues.
Sharing Project Expertise, Methods, and Resources including:
- Improvement of communication in regard to project cross-training, sharing costs of developing common evaluation methods, and exchanging information needed by several projects.
- Five medical projects provided a half-day training session for all projects on the state-of-the-art in the medical management of HIV.
- A poster session at the April Steering Committee meeting permitted individual projects to share their experiences and techniques during the first 18 months. The session was attended by more than 100 visitors.
- A formal mechanism was developed both at the Steering Committee meetings and through the Evaluation and Dissemination Center to distribute the more than 200 documents offered by participating projects to one another.
- Federal briefings on available resources were given at each Steering Committee meeting. Federal grants management staff also provided presentations on matters of common interest on administering the projects.
Development of Common Evaluation Methods and Protocols
Development of a Governance Structure
Information Dissemination through SPNS/Fax and Fax-on-Demand
Information Dissemination through the Internet
For Additional Information:
The complete second year report is available by contacting The Health Resources and Services Administration, Special Projects of National Significance Program at 5600 Fishers Lane, Parklawn Building Room 7A-08, Rockville, MD 20857. The report is also available off of the Internet at the web site of The Measurement Group (www.TheMeasurementGroup.com).
Additional reports and presentations are also available.
HRSA/HAB's SPNS Steering Committee Representatives
1995-1996
AIDS Healthcare Foundation (Peter Reis)
Center for Community Health, Education, and Research/Haitian Community AIDS Outreach Project (Eustache Jean-Louis, M.D.)
Center for Women Policy Studies (Leslie R. Wolfe, Ph.D.)
East Boston Neighborhood Health Center (Judith Steinberg, M.D.)
Emory University (Jacqueline Zalumas, Ph.D.)
The Fortune Society (Tracey Gallagher)
Health Initiatives for Youth (Ron Henderson)
Health Resources and Services Administration (Barney Singer, J.D.)
Hektoen Institute for Medical Research/Cook County HIV
Primary Care Center
(Mary Driscoll, R.N., M.P.H.)
Indiana Community AIDS Action Network (Paul Chase, J.D.)
Interamerican College of Physicians and Surgeons (George Falus, Ph.D.)
Johns Hopkins University School of Medicine (John G. Bartlett, M.D.)
Larkin Street Services (Anne B. Stanton, M.S.W., C.S.W.)
Michigan Protection and Advocacy Service (Jay Kaplan, J.D.)
Missouri Department of Health (Lawrence P. Thomas, M.S.W.)
New York State Department of Health/Health Research (Humberto Cruz)
Outreach, Inc. (Sandra S. McDonald)
PROTOTYPES (Vivian B. Brown, Ph.D.)
SUNY–Health Science Center at Brooklyn (Jill Rips, M.A., M.Phil.)
The Measurement Group – PROTOTYPES Evaluation
& Dissemination Center
(George J. Huba, Ph.D.)
University of Colorado Health Sciences Center (Donna Anderson, Ph.D., M.P.H.)
University of Mississippi Medical Center (Harold M. Henderson, M.D.)
University of Nevada School of Medicine (Trudy A. Larson, M.D.)
University of Texas Health Science Center at San Antonio (Victor F. German, M.D., Ph.D.)
University of Vermont & State Agricultural College (Christopher J. Grace, M.D.)
University of Washington (Karina K. Uldall, M.D., M.P.H.)
Visiting Nurse Association of Los Angeles (David A. Cherin, M.S.W.)
Washington University (Karen Meredith, M.P.H., R.N.)
Well-Being Institute (Geoffrey Smereck, J.D.)
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