We asked members the following question: What does your role as the family delegate look like in your state?
By Ann Gionet
Health Program Associate, Connecticut Department of Public Health
The role of the Family Delegate in Connecticut follows closely Webster’s definition of the word delegate, as "a person acting for another, as a representative." My efforts as the Connecticut Family Delegate support families in embracing their own roles as representative of other families during discussions around health care. The family experience happens at many levels including: the family seeking health care solutions having a one-to-one connection with another individual; community-level participation where a person may interact with many families; and the family leader with a systems perspective whose efforts may touch families statewide. As the Connecticut Family Delegate, I work to support families at individual, community, and statewide levels in their efforts to shape health care in Connecticut. Examples of family involvement in CT include taking part in the AMCHP Family Scholars Program; reviewing and commenting on the Title V MCH Block Grant, and participation on the Connecticut Medical Home Advisory Council. Family participation is supported through administrative support including compensation through stipends.
By Angela Durand
Statewide Parent Consultant, Louisiana Children’s Special Health Services
Being chosen as the AMCHP Family Delegate representing Louisiana is a significant personal honor for me. It has helped me tremendously by helping me to lead by example. In my state, my role as a Parent Consultant has always been about working with the parent component, guiding the parents to be strong parent leaders and offering them information to help them be the voice for families with whom they work with. Being a Delegate has allowed me to attend meetings and speak about what is working and what is not, but also being in the know of the changes impacting our work, it has offered me the opportunity to network with other Family Delegates from various states. It all comes together when we attend the AMCHP conference and meet face to face. Currently, I am networking with other delegates and family members to see how we can enhance the experience of new parents who may be attending AMCHP for the first time. We want to establish a sense of belonging, and hope that they recognize what they bring to the meetings is vital. While it may be overwhelming we want them to gain experience to grow and become a leader for families.
I work closely with the block grant director for Louisiana and write for National Performance Measure #2. Being a Delegate allows me to view and assess the data that comes in and for CYSHCN and look at trends in other states. I have learned so much from my colleagues in other states. We stay in contact throughout the year working on various projects and comparing new ideas. I know that the opportunity to be a Delegate has helped me in seeing the larger picture of health care and how it pertains to lifestyle and environment and even culture. In Louisiana we are known for our unique culture and rich delicious food. We also are looking at healthy eating habits of women and children and children in particular with special health care needs. Being a Delegate has helped me to continue to be a voice for Louisiana and the families we see at Children’s Special Health Services. I am currently housed at the Southeast Louisiana Area Health Education Center in Hammond, Louisiana and this agency helps me to keep in contact with trends and health care activities for Louisiana, as well as working in the Children’s Special Health Services Program.
By Martha-Jean Madison
Co-Director, NH Family Voices
In 1988, the New Hampshire Title V, CSHCN Program Special Medical Services, brought together a group of stakeholders, pediatricians, specialist, and policymakers to look at service delivery systems for children with special healthcare needs. For the first time an invitation was sent to parents who were utilizing these services. Out of curiosity, a handful of parents responded. I was one of those parents. From the very beginning an air of inclusiveness prevailed and a commitment to parent participation was forged. In 1991, through the opportunity off a Special Projects of Regional and National Significance (SPRANS) grant, Special Medical Services had a parent consultant within their program. I was fortunate to be that parent. There was no real blueprint as to how a parent could be integrated into a system that was medically driven. Over the years there have been many ups and downs, trials and errors, but the commitment to bring the family voices to all levels within systems of care has remained a priority. Today, parents are assisting with rules change, block grant activities, including needs assessment, strategic planning, program design and infrastructure building. As a parent, I applaud the New Hampshire Title V program for its steadfast belief in family-centered care.