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 Beyond Story Telling: Family Leadership at the National Level

By Kris Green
Autism and Parent Services Manager, Division of Public Health, Alaska Department of Health and Social Services

I entered the world of MCH with the birth of two full-term sons followed by the birth of premature twin sons. Years of joys and challenges, beginning at birth, through developmental issues and life events eventually led to a professional paid parent role within a hospital. In the hospital setting, I promoted and implemented family-centered care from the maternity center/ neonatal intensive care unit (NICU) to out-patient subspecialty services, surgery center, emergency room care, and bereavement services. Then an opportunity to work at the community level in a paid parent role on autism-related issues for the state of Alaska Title V program led to the role as a national representative for all MCH experiences. I’ve had the privilege of representing families, infants and children as one of two Family Representatives to the AMCHP Board of Directors since my election in 2010. AMCHP has a long history of collaborating with families and consumers to ensure family and youth needs are at the forefront in state and territories planning and delivery of meaningful programs and services using Title V dollars.

The critical role of the Family Rep is to represent the needs and interests of families across the country and to provide expert knowledge of the impact of MCH programs and policy developments on families. Keeping a finger on the pulse of how decisions impact families nationally by watching trends, the Family Reps role is to bring those developments to the attention of the board. In addition, a significant role of the AMCHP Family Rep is to identify best practices on family engagement and support programs that increase family involvement at the local, state and national level.

So, just how do Family Reps effectively carry the family voice back to the board? It sure is NOT done in isolation! It is from the thankful letter to the editor talking about how a [MCH] program impacted a child’s life, stories from family leaders who advocate for children with special needs in their state, or the story from a family struggling in my home state. These stories all create a picture leading to better systems of care. Using this collection of stories "from the kitchen table," I remind fellow board members how organization decisions will impact families.

The Family Rep role of ensuring family engagement is done by monitoring training programs that engage new family leaders. Because of the work of a highly committed group of AMCHP staff and parents leaders, a shared language is emerging that bridges state and territorial Title V staff and parents. Collaboratively, the Family Reps work with the AMCHP Family and Youth Leadership Committee; and partners with Parent to Parent, Family Voices, and Family-to-Family Health Information Centers. As Family Reps, we are strongly influenced by the voices from emerging leaders of AMCHP family delegates, mentors and scholars. These leaders, across agencies and states, are working on competencies that demonstrate the effective transformation of a family’s personal story into a professional message. Collectively, through active listening, open-minded dialogue, strength-based feedback, and respectfully and constructively identifying strengths and gaps, families have become a "technical assistance team" providing meaningful input at the local, state, and national level.

As the family representative, it was not via formal training, but the result of my journey as a parent with the typical hills, valleys, and mountain tops of joys and challenges that bridged my role from local involvement to national impact – what a privilege to bridge my passion for advocacy to the role of carrying forward the voice of all families.