Statement on Permissions for Children in Foster Care to Participate in Treatment Research for HIV Infection
The Child Welfare League of America and its nearly 900 member agencies believe every child and youth is unique, has an intrinsic value to society, and is entitled to have their basic care needs met, to be nurtured and protected, to heal when harm is done, and to have the opportunity to develop to his or her potential. Ensuring that each child receives needed primary and preventive health care is an essential part of meeting these universal needs.
CWLA's Standards for Health Care Services for Children in Out-of-Home Care serve as a guide for the delivery of routine and specialized health services to children in foster care and assert that these children have human rights that should be protected. Because of the vulnerability of children in foster care and the responsibility of the child welfare agency toward children in its care, recognition and safeguarding of these rights are foremost considerations.
Concerns have been expressed regarding states that have allowed children in foster care to receive experimental treatments for HIV infections without adequate safeguards. CWLA's Standards of Excellence for Family Foster Care Services provide guidance in this area, stating, "The foster care agency should obtain written consent [for medical care] from the child's parents, or alternatively, from the court…Parents should grant written consent for their child's medical care," and for those children whose parent's rights have been terminated, the agency "should obtain written consent from the courts." This provision applies to all forms of medical care, including treatment for HIV infection.
Allowing children in foster care to receive experimental drugs for the treatment of HIV infection without providing an independent advocate to protect and ensure the child's safety and well-being-, is contrary to CWLA's Standards for Health Care Services for Children in Out-of-Home Care and our Standards of Excellence for Family Foster Care Services.
As of December 2002, 821,470 adults and adolescents, and 8,804 children under age 13, had been diagnosed with HIV/AIDS in the United States. Many children, particularly those with HIV/AIDS, lack the kind of health care coverage that would allow them to receive state-of-the-art medical care. Children in foster care should not, as a matter of course, be denied access to appropriately reviewed and approved treatment research. Nonetheless, it is in their best interests for the parents or guardians and the child, when appropriate, to participate to the fullest extent possible in the development and implementation of the health care plan so that each child's unique needs and concerns are considered in any treatment decision.
We encourage all concerned to take this opportunity to more comprehensively examine the health care needs of children in foster care, including those who are disabled or have mental health needs. In many instances, these children are without adequate care to address their treatment needs. Priority must be given to providing the advocacy and protections that would help ensure all children in foster care receive needed services so they might best heal from the harms of child abuse and neglect.
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