Parent Advocacy

History of Family/Parent Advocacy

Families of children with special health care needs (SHCNs), that is, children who have or are at increased risk for “chronic physical, developmental, behavioral, or emotional conditions and also require health and related services of a type or amount beyond that required by children generally” (Szilagyi, 2003, p. 137), have been leaders in organizing and advocating for improvements in services and care for children. Among the original leaders were United Cerebral Palsy, Parents Helping Parents, Association for Retarded Citizens, and the Learning Disabilities Association. F/P advocacy groups have organized around innumerable pediatric diseases and genetic conditions (Exceptional Parent, 2000). Indeed, with easier communication and access to information over the past decade through the Internet, self-help parents' groups have proliferated to include F/P advocacy for toddlers, twins, adopted children—in short, any group for which parents and families feel special attention is needed. Public Internet access to high-quality medical and service information has increased the sophistication of P/F advocates (e.g., http://www.mchlibrary.info/KnowledgePaths/kp_CSHCN.html).

As the self-help movement emerged, enlightened health care providers also began to promote family-centered care for children: “the philosophies, principles and practices that put the family at the heart of center of services” (American Academy of Pediatrics, 2003, p. 691). Family-centered care is built on a set of core principles, including respect for family diversity, collaboration of families and health care providers at all levels of health care (i.e., from care of individual children to policy making), and empowerment of families to make health care decisions. Implicitly, these principles recognize the role of families as advocates for their children in health care decision making. The current picture of F/P advocacy now often includes active collaborations between families and professionals to change the delivery and systems of care for children.

Forms of Family/Parent Advocacy

Over the years, we have seen parents and those who care for individuals with special needs have an impact on research, therapies, funding philosophies, and behavior. They have changed bus schedules, doorway dimensions, attitudes, policies, and the law. Most of all, they have moved people to action by their [Page 776]commitment to making a difference in the lives of the people they care for (Exceptional Parent, 2000).

Advocacy activities can be conceptualized as a continuum of roles/activities (Weiner, McCabe, Smith, Monoco, & Fiduccia, 2001). In case or individual advocacy, a family or a professional acts as a proxy for an individual child to press for optimal care and outcomes. Examples include collaboration on individual educational plans for children with special needs, parent/professional jointly developed care plans in pediatric hospitals, as well as social workers' efforts to obtain needed child welfare services for individual children.

...