Improving the quality of life for youngsters with HIV - Baltimore City Head Start program

Children Today, May-June, 1990 by Linda S. Crites, Clare Siegel

If the social and medical service system is insensitive or inadequate to meet their needs, the financial problems and psychosocial stresses of these families are intensified. Furthermore, the lack of coordination among health care and social service providers imposes on families the burden of coordinating their own services, or worse yet, may prevent them from obtaining the care they may urgently need.

The Head Start Project

In an effort to alleviate some of the stressors on these families and improve the quality of the shortened lives of these children, Baltimore City Head Start was awarded an Innovative Project grant from the Head Start Bureau to provide educational services to HIV infected children from birth to age five. In addition to promoting an integrated network of services to these children and their families in Baltimore, the project was designed to stimulate community education geared to prevent the spread of the HIV virus.

An important component of the project, now in its second year, is the Pediatric AIDS Care Consortium (PACC). Composed of representatives from agencies that provide services to families with an HIV infected member, PACC has become a major force within the state for coordinating and improving existing services, and for promoting the development of new services to eliminate gaps and unnecessary duplication. Subcommittees on medical care, prevention/education, foster care/housing, day care/respite care/school, and case management have been created to enhance PACC's efficiency. A sixth committee, which focuses on legislative matters, consists of members from each of the other committees.

Faced with the problems of the illness itself, the absence of family support, societal rejection, and the difficulties of negotiating complicated service delivery systems, many mothers feel too over-whelmed to continue caring for their children. Given the importance of maintaining the child in his or her family setting, the focus of the Head Start HIV project has, therefore, been on the family as well as on the child.

While referrals to the project typically are made by the health care provider, they sometimes come from foster care or social service agencies. Confidentiality has been a major concern throughout the project's development, and every effort is made to protect the privacy of referred families. Criteria for eligibility are simple: The child must be aged five or younger, and must have tested, or have a parent who has tested, HIV positive.

Core services are provided by a team that includes a special educator; a social worker; a teacher experienced in early intervention with medically compromised children; and a research consultant. The project coordinator oversees all aspects of the HIV project, and, as PACC Chair, serves as a liaison among member agencies and organizations with the city. Additional consultation to the team is provided by Baltimore City Head Start coordinators of Handicapped Services, Health, and Social Services and Parent Involvement. Referrals for additional resources are made as needed.