My name is Mahala Turner, and I am the NC Title V State Family Leader. I attended AMCHP’s 2024 Conference, “Partnering with a Purpose,” to celebrate my role of being a family leader for one year.

My Experience Living with a Child with Special Health Care Needs

Before I share my experience as a family leader at the conference, let me tell you about my lived experience.

The title “mom” has gifted me with lived experience in the world of children and youth with special health care needs (CYSHCN). My youngest son, Beau, has Down syndrome, and he is my tour guide for navigating CYSHCN. Together, we have navigated many systems ranging from the neonatal intensive care unit, early intervention, health care (visiting so many specialists!), dental care, education, and our own community. My family’s vision is for Beau to live a life of choice. 

At the 2024 AMCHP conference, I was not only encouraged to persist in achieving this personal vision, but I also gained tools and resources to model and implement best practices. I am excited to continue working to promote whole child and family health in the Division of Child and Family Well-Being at the NC Department of Health and Human Services (NCDHHS) and engage others involved with Title V work to best support and engage families with CYSHCN in North Carolina.

Conference Preparations and Attendance Highlights

 I eagerly waited to register for the AMCHP conference and was thrilled to bring three family partners along with me. I attended the AMCHP Conference 101 Webinar for family leaders prior to the conference so that I could be a good “host” for my fellow family partners. In this webinar we learned about the history of Title V, how to navigate the conference, and other tips and tricks. After it was over, I felt well-prepared and energized to attend my first AMCHP annual conference.

Upon arriving in Oakland, I easily navigated the conference check-in process. With so many interesting sessions to choose from, I was grateful that AMCHP conference leaders developed a helpful guide that tracked the Family Engagement & Partnership sessions (equivalent to a cheat sheet for family leaders). I gained so much information from the many sessions I attended, but I want to focus on what I learned in three of them.   

• In the “Using Care Maps to Tell Your Story” session, other family leaders and professionals provided guidance on how to use my Care Map to speak up at medical appointments and/or educational meetings and how to be a spokesperson addressing legislators. I plan to use the skills I learned to help other families find their voice. I especially appreciated leaving the session with my own completed Care Map. A Care Map is a visual way to show all the people and services involved in caring for and supporting your child.
• In another session, “Building Bridges for Better Health: The Critical Role of Family as Partners in Title V Programs,” a fellow Family Leader shared the benefits of being actively involved family partners in their Title V Program. Specifically, this presenter shared concrete examples of how family involvement benefited the Puerto Rico program’s experiences during a public health emergency (the Zika outbreak). 
• In the “Beyond Stories: Integrating Lived Experiences to Drive Systems Change” session, I learned how people with lived experience are identified as key partners in driving systems change and health equity. I especially appreciated what the presenters shared about their program’s structure and how they provide leadership and advocacy trainings to foster self-advocacy skills.

All three of these sessions provided tools and resources that I can immediately implement into North Carolina’s family engagement Title V program.

Key Takeaways and Next Steps

All three plenary sessions tied into the conference theme and demonstrated the power of “partnering with a purpose.” Oakland is one of the most ethnically diverse cities in the United States and served as a beautiful backdrop for AMCHP 2024. I enjoyed networking with other conference attendees at the Oakland Museum of California, visiting galleries that showcased the genocide of native peoples, the history of Black Power movements, and the Japanese Americans sent away from their homes during WWII, as well as other important historical events. Through all these conference experiences, I made an important connection: partnerships I foster in my role each day are incredibly important and these partnerships enhance and sustain vital MCH programs and services. I will be processing all of the knowledge, tools, and resources I gained for many months. I am grateful I attended this conference and cannot wait to attend AMCHP 2025 in Washington, DC!