By Phyllis J. Sloyer, RN, PhD, FAHM, FAAP
Do you recall having families teach you as a student what it meant to have a parent-professional partnership? If you are not of the millennia generation, chances are this was a relatively foreign concept. In fact, it was much more common to talk around families about families.
Organizational dynamics have also evolved over time. We began to notice an increase in activities aimed at improving customer satisfaction in the private and public arenas. But, it wasn’t until deinstitutionalization and an increase in community-based services that family involvement took on a much more powerful meaning. The needs of families and the advocacy of families led to changes in laws that recognized families as the center of a child’s universe. Community-based alternatives to hospitalization or institutionalization were adopted in Medicaid policies and policies involving developmental disabilities programs. We witnessed a transformation in the educational system through the Individuals with Disabilities Education Act and principles of inclusion. The foundation of quality primary care is based on a core principle of family-centered care. No longer do we speak of doctor/patient relationships but physician/parent partnerships.
The family-centered evolution has led to family inclusion in three principle areas: family to family advocacy; family leadership and participation in the development of community-based initiatives, and families as members of policy-development at a state and national level. While many professionals testify to the power of their program in legislative arenas, nothing is as dynamic or powerful as the voice and face of a family sharing their experiences with the programs and policies impacting their lives.
Those of us who work with families who have children and youth with special health care needs are hard-wired to the concepts of family-centered care. .Parents are part of our staff in the majority of states. Parent organizations have been funded at the state and national levels to play key roles in health initiatives, including national health reform. I am also proud to say that AMCHP recognized the value of families and includes in its voting membership a family from each state and territory as well as seats on our Board.
There are hundreds of heroines and heroes who have led us on this remarkable journey and I am sure you will hear from some of them in this issue. A special thanks to each and every family who has touched our professional lives and created so many positive changes in our programs, communities and nation.