The Orphan Project: Families and Children in the HIV Epidemic

The Orphan Project:
Families and Children in the HIV Epidemic

As a result of the AIDS epidemic and its link to drug abuse, New York City is facing demands of caring for a particularly needy group of orphans: children whose parents or caregiving parent have died of AIDS or whose mothers or fathers are unable to function as parents because they are terminally ill. By the year 2000, as many as 125,000 children and adolescents in the U.S. will have lost their mothers to AIDS. About a third will be from New York City.

The Orphan Project was established in 1991 by its executive director, Carol Levine, to explore policy options to meet the needs of the entire spectrum of affected children -- from dying infants to healthy adolescents. There is no single solution, and each option has advantages and disadvantages. Moreover, there are different potential roles for the public and the private sectors. Of particular concern are issues concerning confidentiality and disclosure, custody and placement, and bereavement. Most recently The Orphan Project is involved in providing guidance and research around the newly developed service of permanency planning, which assists terminally ill parents in identifying new guardians for their children and executing a legally binding custody plan.

In carrying out its work, The Orphan Project convenes meetings, publishes articles and reports, and develops collaborative work with direct service providers and family members. Although New York City is its primary focus, The Orphan Project also collaborates with concerned individuals and organizations in other regions, and maintains a focus on global issues relating to orphans of the HIV/AIDS epidemic in the developing world.

The Orphan Project is funded through foundation grants and receives administrative and fiscal support services from The Family Center.

List of publications and materials

e-mail: The Family Center

Publications and materials

The following materials are available free of charge from the Orphan Project:

The White Oak Report: Building International Support for Children Affected by AIDS (New York: The Orphan Project, 2000). Read the Executive Summary.

Carol Levine, Allan M. Brandt, and James K. Whittaker. Staying Together, Living Apart: The AIDS Epidemic and New Perspectives on Group Living For Youth and Families. (New York: The Orphan Project, 1998)
This report introduces a subject related to both AIDS and child welfare that has to date received no sustained analysis: the potential role of new residential group care options, especially for older children and adolescents, and for families. The focus here is on youth whose difficulties are closely related to the experience of AIDS-related illness and death. This report is intended to stimulate discussion informed by facts and well-grounded options.

To order any of the above publications

The following books from the Orphan Project are available from their respective publishers:

Families in Crisis: A Report of the Working Committee on HIV, Children, and Families. (New York: Federation of Protestant Welfare Agencies, 1996).

In 1995, the New York State Legislature requested that the AIDS Institute of the New York State Department of Health, in conjunction with other relevant agencies and service providers, produce a report on children orphaned by HIV/AIDS and a plan for comprehensive permanency planning in New York State. Substantial increases in the rates of HIV infection among women in New York State and a consequent near doubling of the estimated number of children and adolescents who will be orphaned by maternal HIV/AIDS death by the beginning of the century have vastly expanded the need for services. The Working Committee on HIV, Children, and Families was convened to develop this report and make recommendations. Chapters include an Executive Summary and an Introduction, "Estimated Number of Children and Adolescents Orphaned by Maternal HIV/AIDS Deaths in New York State," "Permanency Planning Experience and Service Need," " Review of Current Law and Regulations Concerning the Children of Parents with HIV/AIDS," "Recommendations of the Working Committee on HIV, Children, and Families," and a list of the members of the Working Committee. Appendices include a Plan for Pilot Demonstration Project, Regional Projections of Children Orphaned by HIV/AIDS, Services Potentially Available to Families Affected by HIV/AIDS, and Methodology for Projections Analysis. Copies of the report may be obtained by contacting: Federation of Protestant Welfare Agencies, 281 Park Avenue South, New York, NY 10010, Tel: (212) 777-4800, Fax: (212) 533-8792.

Other materials (not produced by the Orphan Project):

Shelley Geballe, Janice Gruendel, and Warren Andiman, eds. Forgotten Children of the AIDS Epidemic. (New Haven, CT: Yale University Press, 1995).

The Family Center. A Gift for My Children. Videotape, 1995. For information call the Family Center at (212) 766-4522.

Gay Men's Health Crisis and South Brooklyn Legal Services. What About My Kids. Videotape. For more information call South Brooklyn Legal Services at (718) 237-5546.

Carol Levine

Carol Levine is Executive Director of The Orphan Project: Families and Children in the HIV Epidemic, a research and policy development project analyzing the impact of the epidemic on children whose parents are ill with or have died of HIV/AIDS. The Orphan Project, which is administered by the Fund for the City of New York, began in 1991 as the successor to the Citizens Commission on AIDS, of which Ms. Levine was also Executive Director. Before joining the Commission in 1987, she was on the staff of the Hastings Center, a nonprofit research and educational institute in the field of medical ethics. She was editor of the Hastings Center Report, and managing editor of IRB: A Review of Human Subjects Research.

Ms. Levine was a member of the White House Task Force on Health Care Reform. She has been a consultant to many groups on AIDS including the World Health Organization, the World Council of Churches, the New York State AIDS Advisory Council, the Federal Office of Protection form research Risks, and has lectured and written extensively on medical ethics, family issues, and AIDS. Among her books are Taking Sides: Controversial Issues in Biomedical Ethics (Dushkin, 6th ed., 1995), and A Death in the Family: Orphans of the HIV Epidemic (United Hospital Fund, 1993). Her most recent book is AIDS and the New Orphans: Coping with Death, co-edited with Barbara Dane (Greenwood Publishing Group, 1994).

In 1993, Ms. Levine was one of 31 winners of MacArthur Fellowships awarded by the John D. and Catherine T. MacArthur Foundation. In January 1995, Ms. Levine was one of four MacArthur Fellows invited to present their work at that Foundation's staff retreat. In March 1994, Ms. Levine was named one of eight recipients of the Prudential Foundation Prize for Non-Profit Leadership. In November 1994, Ms. Levine also received awards from the New York Council on Adoptable Children and the Church Avenue Merchants Block Association (CAMBA) in Brooklyn.