Linda Starnes has spent her life actively involved in the disability community as a special educator, parent, speaker, and advocate. After working in special education and at the U.S. Departments of Justice and Education, she began her most important role: Mother of two with different rare genetic conditions and complex medical care needs. Linda managed years of 24-hour home nursing, worked with physicians and therapists in 15 medical specialties, and oversaw well over 40 hospitalizations for her children. She has served on numerous boards of disability, health care, and educational institutions, and presents at conferences each year. Linda is the Statewide Family Leader for the Florida Department of Health Office of Children’s Medical Services Care Plan and Specialty Programs, Title V CYSHCN Program, and is their Family Delegate to AMCHP. She’s part of AMCHP’s Leadership Lab, served on a hospital team with the National Care Coordination Academy, is on the executive committee for Florida Family Leader Network, is an advisory member for UM-Miller School of Medicine’s Mailman Center for Child Development, Board of Directors for Disability Rights Florida, and advises on a large multi-site PCORI-funded study on health care transition.
Linda serves as a member of the AMCHP Conference Planning Committee. We invited her to share her thoughts to give participants a chance to learn more about her, the work she contributes to the committee, and the importance of this conference from the perspective of a family leader.
Please describe your role on the AMCHP Conference Planning Committee.
What a pleasure it has been to work on the AMCHP Conference Planning Committee this past year as a welcomed and included committee member. It has been a great experience to bring a state Title V CYSHCN Program perspective to the group, as well as a family leader perspective during our monthly meetings. I see my role as providing the lived experiences as a family leader working in the field and my connections and collaborative capabilities into the conference development process. This has been a rewarding activity, and I’m pleased to be able to continue for a second year with the committee.
Given your work as a family leader, what motivated you to join this planning committee?
Bringing family leader voices forward into any planning work within the Maternal and Child Health (MCH) realm is always important to me, whether I’m personally involved or encouraging others to step forward in involvement. The Conference Planning Committee seemed a terrific fit for me as the Statewide Family Leader with Florida’s Title V Program, as a long-time conference presenter (including two previous AMCHP conferences), and in my conference plan experience from past career and volunteerism settings.
I also knew from other AMCHP-related workgroups with which I’ve been involved, that this would be a chance to learn from and collaborate with the many interesting individuals AMCHP brings together. Each step of the co-design processes utilized by the committee is very appealing. It’s a wonderful way to give back to AMCHP while gaining a great experience.
How do you ensure family voices are represented throughout the conference?
This committee has a well-tuned viewpoint to make certain diverse speakers and presentation topics are represented across the entirety of the event. There is much collaborative discussion at our meetings with consistent reminders by me and others to consider family voices at each step of planning, with “family” being defined in the broadest and most diverse way. I’m committed to ensuring family representation within all aspects of the conference – from a large portion of attendees being family leaders to family leadership representation on the plenary stage. We want the conference to be appealing to everyone, and for everyone to see people like themselves at networking events, roundtable discussions, delivering workshops, and providing poster presentations.
Hopefully, this will ensure a vibrant and thought-provoking 2023 conference for all involved with MCH work, including family leaders and community- and family-run organizations that uplift family engagement, partnership, and leadership.
What features/aspects of this year’s conference are you most excited about?
As one who really enjoys networking, I’m very excited about getting together in person … and in such a fun city as New Orleans! The chance to see exhibitor booths and poster presentations in person is so appealing, along with the serendipitous moments of connection one makes at a workshop session or roundtable discussion. Can you tell I’m a “people person?”
What is something you want participants, especially other family leaders to know about this year’s conference?
The coming 2023 AMCHP Conference will capitalize on best practices we’ve learned in in-person and hybrid conferences over the past few years. It will be safe and enriching, however you choose to attend. This year’s conference will not only provide the opportunity to grow in knowledge about family leadership, but also about many other topics of current importance within maternal and child health that intersect with family engagement.
Thinking back on one of the 2022 conference plenary sessions, what is your “why” for working in maternal and child health?
This work of advancing family engagement, partnership, and leadership has been around for decades, yet has only been recognized as a welcomed and included field for a short while. Increasing the depth of understanding as to what family leaders of all ages and backgrounds can bring, through lived experience, to the work of maternal and child health is “my why.” My hope is to help in some small way in raising up many more family voices for public health and health care improvements and on behalf of families like mine, with a loved one with complex medical care needs.
What does the 2023 conference theme, Cultivating Diverse Leaders in Maternal and Child Health, mean to you as a family leader?
There is much diversity to the aspect of “family.” Growing the variety of family voices represented in the maternal and child health field (pun intended) will serve to enrich the work from the soil up. Hopefully this theme will resonate with all who participate to cultivate more, and more diverse, family leaders in their work.
How do you think this conference will impact the future of the maternal and child health field?
AMCHP’s annual conference brings together so many who passionately care about the health and well-being of all families, and that is felt through every aspect of the conference offerings. The opportunity to reunite in person—all together learning together—will carry lasting impact just for this alone. Coupled with this will be informative, interactive, influential, and incredibly inspiring presentations of all kinds to help us all grow in knowledge, skills, and abilities. I can’t think of a better way to impact our MCH workforce and to impact the future of our work!