National and state policies influencing the care of children affected by AIDS

Abstract

The portrait of HIV-affected children and youth that emerges from this policy overview is still one of children obscured from view by the shadow of their parents' and siblings' illness and policies that only address the needs of HIV-infected individuals. In addition, the secrecy and stigma that still surround HIV and AIDS make it difficult for HIV-affected children and youth to benefit as fully as they might from policies and programs that provide more generic types of care and assistance. Our failure as a nation to better illuminate the plight of HIV-affected children and youth can only leave us with a generation of children who are at greater risk of psychiatric illness, involvement with the criminal justice system, substance abuse, and contracting HIV. To avoid these consequences, both public and private sectors must place the spotlight on the development of new policies and programs designed to specifically meet their needs. Because the solutions defy traditional disciplinary and administrative boundaries, we also need to become more skilled at interagency planning and collaboration. No one system alone can be responsive to the many social, mental health, legal, and support needs of these children and their caretakers. More specifically, recommendations for improved systems of care to HIV-affected children, youth, and their families are as follows: To promote and fund cross-disciplinary initiatives among agencies that administer child welfare services, income supports, AIDS care, and children's mental health services at the national, state, and local levels to specifically meet the mental health, psychosocial, and permanency planning needs of HIV-affected children and youth. To provide training opportunities for Ryan White Title I, II, and III case managers on assessing the needs of HIV-affected children and youth, developmental theories and concepts, principles of family-centered care, and child welfare issues. To increase funding of the Ryan White CARE Act to permit a more family-centered approach to care across Titles. To establish clearer guidelines for establishing a proportional basis for funding services to infants, children, and women under the Ryan White CARE Act. To support legislative, educational, and advocacy efforts to make managed care and welfare reform more responsive to the needs of HIV-affected children, youth, and their families. To encourage states to provide additional funding for mental health services specifically targeted to HIV-affected children and youth that are sufficiently flexible and of a long enough duration to adequately meet their needs. Surely, as we move into a new millennium with the capacity to map the human genome and clearly view distant galaxies, we should be able to marshal the will and resources necessary to formulate a sufficiently focused effort to respond compassionately and effectively to the needs of a generation of AIDS-affected children and youth.