To determine the health care, legal care and social service needs of HIV-affected parents and their children, the Consortium for Child Welfare conducted a year-long, ethnographic, citywide research project in 1995-96 in the District of Columbia. This project, the Permanency Planning Project, was drawn up to mobilize the relevant care-giving community and HIV-affected population to ensure that the needs of affected families were being addressed.

Community building was an important part of the project. The project team conducted over 100 in-depth discussions and interviews with social service and health care providers, lawmakers, policy analysts and HIV-affected parents and teenagers. Focus-group discussions were held: three with infected parents, one with teenagers affected by HIV/AIDS and two with service providers (social workers, lawyers, mental health providers, nurses, etc.). Additionally, three community round-table meetings were held, involving about 120 people.

These and other issues identified by the study participants were included in a final document, AIDS Orphans and Life Planning in the District of Columbia: Voices of the Community. Some of the concerns noted for the HIV-infected community of women (parents) and service providers:

• The majority of HIV-infected parents in the city are single women who are heads of households. Since many are sole care-takers of their children, they also rely on some form of public assistance. Some have a history of substance abuse.
• Most HIV-affected families have two or more dependent children. These children require social services to help them deal with issues of loss, grief, pain and stress related to their parents' illnesses and deaths. Without significant help, most children orphaned by AIDS face an extremely difficult future.
• Most children living in HIV-affected families are not themselves infected. They carry the stigma of the disease, however, and are difficult to place with adoptive families. Most of these children are of primary or early secondary school age and a large majority are Black.
• Some of the children affected by HIV/AIDS may be adopted by other family members or friends. Many parents have no one to take care of their children.
• After a parent's death, children whose families have not made adequate plans for them are placed in a shelter or emergency home and then moved into foster or group care. In many cases, brothers and sisters are separated; they move through a series of homes and are deprived of permanent relationships. Most suffer serious emotional problems.
• Planning for the care of HIV-affected children can be a no-win situation because there are no "in-between" options for this population. The laws dealing with custody transfers are punitive and there are no standby guardianship programmes or laws to facilitate life/permanency planning for families.

Solving these problems cannot be accomplished without a citywide policy regarding the HIV-affected population. The Project therefore ended with a one-day policy forum for about 130 service providers, policy analysts, parents and teenagers living with/affected by HIV/AIDS. They recommended that the following actions be taken:

• Implement programmes based on collaborative partnerships of HIV/AIDS service agencies, child welfare groups, legal service providers and other support organizations to provide integrated, community/neighbourhood-based services for children and families affected by HIV/AIDS. The underlying objective of these programmes is to provide a service and support infrastructure to facilitate life planning for affected children and families.
• Develop a process through which children's wishes and needs are heard for all life-planning activities (e.g., to meet teenagers' wishes to keep siblings together after their parents die).
• Develop new legislation and support programmes to guarantee custodial wishes of HIV-infected parents, such as standby guardianship legislation. This type of legislation must include the wishes and concerns of the children, birth parents and standby/adoptive parents.
• Establish a forum for ongoing discussions (towards the development of programmes) by social service and health-care providers, lawmakers, policy analysts and HIV/AIDS-affected parents, families and their children.
• One of the outcomes of the Project was the funding of the Family Ties Project, which seeks to provide the type of life-planning services needed.

"I have spent a lot of time trying to understand why people developing social services programs around HIV and people giving money to programs can't get what family-centered care means. Is that such a difficult concept to understand? Everybody comes from a family. A woman and her child come together. They are not two separate entities. They don't need two separate programs." HIV/AIDS service provider

"When my son was in the clinic, they kept saying, 'Let's test him again. If you need anything, call me. Does he need anything?....The day that they discharged my son, all those services stopped. I still walk past there and know these people, because I still take him to Children's Hospital; but we don't go to the clinic anymore. They don't even remember me." Parent

"Family-centered case management does not take place in a building, in an office." HIV/AIDS service provider

"When the HIV-infected person has passed away, they have survivors, families. And that's when the system kicks them in the head. That's when they say, 'You need to report in 30 days, if that person's passed away, so that benefits can be cut off.'...I thought if the person has passed away, there should be more benefits. There should be more support services for the survivors, and not less. We really need some support, somebody to come in and keep this family together and not break it down." Parent