Custody Planning with Families Affected by HIV

Abstract

Despite treatment advances, parents with HIV/AIDS may become incapacitated or may die before their children are grown. Custody planning or planning for the children's care in case of the parent's illness or death is often identified as an important step by service providers and parents (Goggin et al., 2001; Hackl, Somlai, Kelly, & Kalichman, 1997; Mason, 1998; Tompkins, Henker, Whalen, Axelrod, & Comer, 1999). With plans in place and smooth transitions, children can have a sense of continuity and predictability (Nagler, Adnopoz, & Forsyth, 1995; Siegel & Freund, 1994). A formal or legal plan is generally considered the best outcome for parents and children. If formalized before the parent's death, then a legal battle can be avoided later and the parent has the greatest assurance that his or her wishes will be observed. Although legal services are necessary to making a formal plan, they are often insufficient. Parents with HIV are often low-income women of color living in the inner city and managing multiple stressors, including substance abuse, stigma and isolation, and complex medical regimens (Gillman & Newman, 1996; Goggin et al., 2001; Hackl et al., 1997; Jenkins & Coons, 1996). HIV-infected parents may also be struggling with depression (Axelrod, Myers, Durvasula, Wyatt, & Cheng, 1999; Miles, Burchinal, Holditch-Davis, Wasilewski, & Christian, 1997; Simoni & Ng, 2000; Tompkins et al., 1999) or with their children's behavior (Forehand et al., 1998; Forsyth, Damour, Nagler, & Adnopoz, 1996). Social workers are crucial to helping parents address the psychosocial challenges related to health, stigma, and environment that may become obstacles to planning. PROJECT MODEL The Family Options project combines social work and legal services to assist HIV-affected families in making arrangements for their children in the event that the parent is no longer able to care for them. HIV-infected parents and the children's potential caregivers use the services to develop a plan, legalize it, and implement it after the parent's death or debilitation. Family members or friends who are already caring for HIV-affected children, that is, children of an HIV-infected parent, also use the service to obtain guardianship of the children or otherwise legalize their relationship and to stabilize the newly configured family. The project is based theoretically on the resiliency model of family stress, adjustment, and adaptation as it applies to families affected by illness (McCubbin & McCubbin, 1993). Using this model, HIV disease is viewed as a stressor that places physical, financial, and emotional demands on the family due to the parent's potential or ongoing disability, interactions with the health care system, and management of complicated medical regimens. In addition, HIV carries a stigma that makes emotional and social demands on families. The family's response to this stressor depends on the pileup of other demands, such as financial concerns, or family members' developmental stages; how the family views the illness; the family's past patterns of functioning; and the family's resources. The project uses a problem-solving approach emphasizing empowerment to support the family's ability to manage the illness and think to the future, whether by accessing outside resources or developing skills and providing information and education (see Mason & Vazquez, 2004). In most instances, social workers and attorneys collaborate to facilitate the completion of a plan. Clients may choose to use legal services only, but most clients use both legal and social work services. A client usually meets with a social worker first. When it is time to formalize the plan, the social worker makes a referral to a project attorney. Social workers and attorneys continue to work together with the client through court procedures and after the plans are legalized to ensure that the family is stable. …