Custody Planning with HIV-Affected Families: Considerations for Child Welfare Workers
Mason, Sally, Child Welfare
Most of the literature on permanency planning is based on the assumption that HIV-infected parents have custody of their children. A growing number of children entering child protective services, however, have an HIV-infected parent. Whether reunification or adoption is the permanency goal, these parents are concerned about their children's future after the parents' death. This article is drawn from research on custody planning with HIV-infected parents, from clinical literature and experience, and from a training curriculum for child welfare workers developed and implemented by the author. The lessons learned about custody planning with HIV-involved families are applied to practice with families who are involved with the state because of abuse or neglect of their children.
Women represent one of the fastest growing groups of people infected with HIV [Hackl et al. 1997; Ickovics & Rodin 1992]. This shift in the demographics of the HIV epidemic presents a new set of challenges to the child welfare system. Earlier in the epidemic, child welfare professionals had to move quickly to meet the needs of infected children. In more recent years, public health officials and women's rights advocates have refocused the issue on women with HIV and their childrenchildren who are not infected but are affected by their parent's illness. Professionals have responded with innovative programs and research into the custody planning needs of HIV-infected parents [Levine 1995]. The literature and many of the programs, however, focus chiefly on women who have custody of their children and are not involved with child protective services.
The needs of HIV-affected families are similar to those of other families in the child welfare system. HIV-affected families, however, have some special needs related to stigmatization and the disease process. Whether reunification or surrender is the permanency goal for these families, child welfare workers have, at least, the opportunity to introduce the idea of long-term planning to HIVinfected parents and, at best, to help parents put a plan in place in case they die before their children are grown.
In 1996, at least one out of every four persons who tested HIV positive was female [Centers for Disease Control 1996]; some experts say the rate may be as high as one in three. Women of color make up the majority of women who are infected-in 1996,57% of women diagnosed with AIDS were African American, and 19% were Hispanic [Centers for Disease Control 1996]. Though the public still believes injected drug use is the main route of transmission for women, in 1996, heterosexual transmission accounted for a slightly higher percentage of cases in women than injected drug use [Centers for Disease Control 1996].
As the number of HIV-infected women increases, so does the number of HIV-affected children. Michaels and Levine  estimate that 80,000 children and adolescents in the U.S. will lose a mother to AIDS by the year 2000. The increase in the number of infected women and affected children in the U.S. is reflected in the child welfare system. In the Illinois Department of Children and Family Services, the number of HIV-infected women has increased almost 250% since 1994 and more than 800% since 1991 [Monk 1997]. Many other cases are likely unreported; HIV-infected women are often reluctant to tell anyone, especially a child welfare worker.
Most of the children of these women are healthy; they do not have HIV. When one family member has HIV, however, everyone in the family is affected by the illness [Wilson 1995]. Children or extended family may exhibit similar feelings to the person with HIV, including guilt, anger, and fear [Bonuck 1993]. Children or relatives often live and mourn in secret, isolated from social support and formal services because of the stigma of HIV [Dane 1993; LSC and Associates 1994; Tiblier et al. 1989]. HIV-affected families are best served by programs that acknowledge the impact of HIV on every member of the family [Gruendel & Anderson 1995; Tiblier et al. …