By Quondalynn Rainey, MHC, Health Care Transition Program Manager, Georgia Department of Public Health

Ace’s Journey to Advocacy

When 17-year-old Ace joined Georgia’s Youth Advisory Council, he struggled to manage his asthma. He recognized his medication by sight but couldn’t name it, explain its purpose, or talk comfortably with his doctor. Through the Georgia Department of Public Health’s youth advisory council, which implemented Rhode Island Parent Information Network’s model, Ace learned critical health care transition skills using the S.T.E.P.S. framework: Start Early, Talk, Educate, Plan/Prepare and Practice, Speak Up & build Support. He progressed from simply photographing his medications to memorizing their names, dosages, and uses. With continued education and peer support through the council, along with encouragement from his strengthened support system, Ace’s confidence grew as he began to refill his prescriptions on his own, ask his doctor questions, and encourage friends to take charge of their health. He also found his voice, sharing perspectives in state-led focus groups to improve youth-friendly health policy.

Building Leaders for a Healthier Future

Ace’s story represents how the Youth Advisory Council transformed participants from hesitant patients into confident self-advocates and leaders. Youth with and without special health care needs, and with diverse abilities, from across the state, were intentionally included to ensure broad representation and personal experience. Many young people face gaps in knowledge and confidence as they move into adult care, risking medication errors, missed appointments, and possible poor long-term health outcomes. The council aims to address these challenges by empowering youth to build leadership, communication, and advocacy skills while advising on public health policies and programs that directly affect them.

In a major milestone, members chose a new name and vision for the group: Georgia Youth Healthcare Leaders (GYHL). Their mission is to empower young people transitioning to adult care to take charge of their health, build leadership, gain independence, and make a difference by connecting, advocating, educating, and leading peers toward a healthier future. This new identity created unity and ownership among the members and communicated the group’s purpose to the broader community.

Broader Contributions to Public Health

Council members contributed to public health efforts far beyond the health care transition. They provided feedback on state needs assessments, participated in focus groups, and supported messaging around bullying prevention and healthy relationships. They also partnered with a nonprofit organization to co-design five murals in hopes of creatively educating and raising awareness about the S.T.E.P.S. of Health Care Transition.

Key activities for the youth participants included co-deciding meeting schedules, attendance policies, speaker topics, outreach strategies, and future projects. Youth strengthened soft skills such as facilitating virtual meetings, interviewing youth engagement intern candidates, taking and distributing notes, maintaining a shared communication platform, practicing public speaking and active listening, giving feedback to adults in positions of power, and making effective group decisions, to name a few.

Adaptation for Accessibility

To adapt the Rhode Island model to Georgia, the program shifted to a fully virtual format to remove transportation barriers and reach youth statewide. It welcomed participants with and without special health care needs, across a range of abilities, to reflect Georgia’s youth. Incentives were shifted from being given after each meeting to the end of the program for logistical reasons. These adaptations increased access and flexibility.

Program Engagement and Outcomes

Of the 18 youth who started, only two left by the third month, with an 83% average attendance per meeting among the remaining members. And of the 16 ending members, 13 expressed strong interest in returning, highlighting the program’s relevance, appeal, and strong engagement. Their voices and hard work helped secure internal funding to continue this important work for an additional year.

Overall, youth reported increased confidence managing their own care, stronger leadership and communication skills, and greater readiness to advocate for themselves and others. Many shared information on transition to adult health care informally with friends and family, extending the impact beyond the council itself.

Lasting Impact and Future Plans

The Georgia Department of Public Health plans to fully integrate GYHL into long-term youth engagement efforts, maintaining the council’s procedures, evaluation tools, and strengthening the sustainability and communication plan to maximize limited resources while maintaining the fidelity of this important work, building off the lessons learned. A virtual format will continue for accessibility, supplemented by occasional in-person gatherings. Future plans would encourage seasoned members of the council to continue while mentoring new members, supporting a peer-led continuity model, and partnering with other community youth-led organizations to give opportunity for youth leaders to practice outreach efforts in their local communities amongst peers throughout the state. These partnerships will assist in providing leadership opportunities to our council members while allowing our message of youth empowerment, advocacy, and health management to reach more youth and young adults throughout the state.

Our Replication Project Experience

Participating in the Replication Project added tremendous value by offering a proven framework, technical assistance with evaluation, sustainability, and communication plans, knowledgeable coaching, and a supportive network. These supports saved time, strengthened program quality, and built staff capacity. Other organizations should consider participating in replication opportunities because they offer a structured roadmap, reliable guidance, and a community of practice that makes replicating authentic youth engagement more achievable and sustainable.