State Profile: This Southeastern state has a large and highly heterogeneous population, with about 28.7% identifying as Hispanic or Latino, 16.9% as Black or African American, and the majority identifying as White. It also has one of the highest proportions of older adults in the country, with 21.8% aged 65 years and over, while nearly 19% are younger than age 18, reflecting both retirement migration and family growth. The state mirrors the national prevalence of 1 in 5 children (ages 0-17 years) identified as CYSHCN. The CYSHCN population demographic metrics align with those of the overall state population, and a higher percentage use public insurance than the national average. 

Refer to the full implementation guide for details.

Lessons Learned

  •  Start small with pilots, then scale gradually.
  • Increase CYSHCN staff support and program awareness via branding and partnerships.
  • Create standardization metrics earlier in the process.
  • Consensus-building and definition alignment are critical for fidelity.
  • Be willing to be adaptable and curious.
  • Collaborate and build trust across stakeholders to drive long-term success.
  • Use constructive conflict; have a space where people feel safe enough to give their opinions, and realize that we're going to come out with the best collective answer.
  • Communicate continuously with families and create intentional feedback loops to support quality improvement.
  • Use available tools, trainings, and resources.
  • Prioritize the collective over individuals. 

Quotes from Title V Leaders


Sustainability and Burnout:

We've had serious conversations with each other [in leadership] about [sustainability], and when things are going on in our life, because we feel like our work isn't done here, but [the innovation has] really tied us to this. I’m getting a little teary, but what keeps us here is the passion for it and fear that if we weren't here, would it just implode and then that would all be for naught. At the end of the day, I would love if it just said on my gravestone – ‘because she made a difference in one child's life.’ Like that's all we want to do. But we also recognize that we had to get other people on our team [involved] and build on that success, planning sustainability because we were burning out and could only do so much of the work. And so we've also had to say, ‘hey, we can only empower them the best that we can, but we can't be in every conversation, and they need to know to pull us in when they need to.’ But we also have other things that we've got to work on or they won't be sustainable as well. I have to trust that other people, they're going to do their best and that we give them what they need to do it. It wouldn't be exactly how I would do it, but they're going to go on to great things.

Best Practices When Working With Family Leaders:

With our QI work, we have a family partner who's a full team member at the table, and she asked the best questions, and then [the clinicians] learned to really trust her expertise. It’s been really amazing to see clinicians who have the best hearts and the best intentions, but then when you have that equal voice at the table with that family lens, it changes the conversation in a really great way- asking the curious questions. Did you hear about this? Have you ever heard of this? We do pay our family leaders, because in the field when we’re working with family partners, I would notice there would be like a lot of turnovers - because again they're in this role because of their lived experience, and then we're asking them to do more and at the end of the day we’re burning them out, or it’s compassion fatigue. And so we'd see like a lot of turnovers with that. So, I do think for teams that can, it's important to pay for that expertise and with that, then I think you get more consistent family stakeholders at the table, which then also helps, it helps with building trust.

Last Updated

02/27/2026

Source

American Academy of Pediatrics