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 The Family Voice: Important Then…Critical Now!

By Bonnie Strickland, PhD
Director, Division of Services for Children with Special Health Needs, Maternal and Child Health Bureau

In the summer of 1987, then Surgeon General of the U.S. Public Health Service, Dr. C. Everett Koop, issued the landmark report entitled, Children with Special Health Care Needs: Campaign ’87 – Commitment to Family- Centered, Community Based, Coordinated Care. That report established the first national agenda to promote quality systems of services for children with special health care needs and their families. It is well worth noting that in the very first, and central, theme of the report Dr. Koop charged families and professionals involved in the care of children with special health care needs with working together to improve the lives of children and their families through a system of family-centered, community-based, coordinated care.

Since that time family professional partnership has been a cornerstone of Title V values, vision and mission. We celebrate a long history of recognizing, embracing, and supporting the principles of family/professional partnership by engaging families as leaders, advisors, and advocates on behalf of children and youth with special health care needs. Twenty years ago, in 1993, with the nation’s first attempt at national health care reform, Title V leaders in every state worked closely with family leaders to establish Family Voices, a coordinated national and state network of families whose mission was to work with partners to create a prominent voice in promoting, examining, and responding to the health reform movement of the time on behalf of children and youth with special health care needs. Those early partnerships provided unique and powerful insights into the potential influence and value of the family voice in influencing the design, utility, and impact of the health care system for all children and families.

Fast forward more than 25 years after Dr. Koop’s original vision of family/professional partnership, and once again, we are at the threshold of realizing unprecedented change in the nation’s health care system. This time around, due in large part to the work of our original and current pioneers, family partnership and shared decision making are recognized as essential elements in nearly every national health care transformation initiative. This is fortunate because, even with unprecedented improvement, the new health care environment includes many important provisions not yet widely tested in the daily lives of children, youth and families with special health care needs. Ensuring that provisions related to essential health benefits, patient navigators, provider networks, and family/patient-centered care are appropriately defined and responsive to the needs of children, youth, and families will continue to pose a challenge. In order to get it right, the vigilance, voice and influence of the family/professional partnership remain as critical as ever. As we envision and articulate the role of Title V in this exciting and historic endeavor, we should remember our history, celebrate and build on what we have learned, and rededicate ourselves to the first and central principle of that original national agenda…..working together to improve the lives of children and their families through a system of family-centered, community-based, coordinated care.

Dr. Christina Bethell, director of the MCH Data Resource Center summarized the family/professional partnership quite nicely in an upcoming commentary…."authentically engaging families and patients at all levels draws us into closer alignment with already deeply held values, aspirations, instincts and goals to promote and improve health and health care."