Academic journal article Child Welfare

Parental Loss Due to HIV: Caring for Children as a Community Issue --the Rochester, New York Experience

Academic journal article Child Welfare

Parental Loss Due to HIV: Caring for Children as a Community Issue --the Rochester, New York Experience

Article excerpt

The number of children in the United States who will lose a parent to AIDS is increasing. Permanency planning to help families affected by AIDS includes case management, mental health, medical care, child welfare, and legal services. These services are provided by a number of different professions, and have largely been reactive and noncoordinated. This article presents the efforts of one community in a midsize city to develop and implement a multidisciplinary coordinated plan for providing services to children affected by the illness or death of a parent from HIV/ AIDS.

As the AIDS epidemic continues, the impact of HIV/AIDS on infected parents and their children has become an expanding crisis with catastrophic consequences for families and the communities in which they live. Michaels and Levine [1992] estimate conservatively that as many as 125,000 children in the United States will lose their parents to HIV/AIDS by the year 2000. In New York State, HIV/AIDS now surpasses any other single cause of death for women 25 to 44 years of age [RATFA 1997]. Current estimates are that by the end of this decade, 58,000 children will have been orphaned in New York State by maternal death from HIV/AIDS [Working Committee on HIV, Children, and Families 1996].

New York State's Working Committee on HIV, Children and Families [1996] projects that 500 children will experience maternal loss from HIV/AIDS in the Rochester, New York region by the year 2000. Local estimates from experts in the social services and medical communities put the number of children closer to 1,000. The majority of these children are not infected with HIV [RATFA 1997].

As dramatic as the sheer numbers are, the destructive impact that HIV/AIDS is having on families, children, and communities of color is even more dramatic. By far, the majority of children who will lose a parent to AIDS-90%-will be African American and Latino [Committee on HIV, Children, and Families 1996]. In the African American and Latino communities, informal adoption by relatives (usually grandparents and aunts) is common; these relatives often care for children whose parents die or are unable to take care of them. In creating any kind of workable approach to caring for HIV-affected children, the informal placement systems and other support networks that exist in the African American and Latino communities must be recognized and supported. Additionally, any coordinated approach must develop culturally competent strategies for meeting the needs of children of all racial and ethnic backgrounds.

This article addresses the myriad challenges involved in mounting a community response to meet the permanency planning needs of affected children. Since the number of affected children in all areas is on the rise, it is essential that the impediments to the planning process be understood and solutions pursued with a comprehensive, multidisciplinary approach.

Rochester, located in western New York State, and a nonepicenter of the pandemic, typifies the challenges of "second wave" cities. Nonepicenter areas such as Rochester are eligible for fewer resources to assist in permanency planning, and face unique obstacles in comparison with service providers in the epicenters, such as New York City. AIDS is still heavily stigmatized in small cities, and there is a conspiracy of silence among family members and other caregivers about drug use and HIV/AIDS.

Developing comprehensive policy in a relatively small community, however, has certain advantages. Because the number of providers of social services, case management, medical care, and legal services in Rochester is limited, they have been able to come together to develop and then implement a five-year plan to respond to the needs of dependent children affected by HIV/AIDS. This committee of the Rochester Area Task Force on AIDS (RATFA) is a multidisciplinary group; its goal is to draw broad public support to the problem of providing services to affected children. …

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