Where Kids’ Stories Help Guide Policy

Kylie Robertson is so good at sharing her story, the 19-year-old has already published a book.

“Finding Hope in the Darkness” is about her mission to find joy in small things despite living with an undiagnosed illness since she was a baby.

This week, she’ll give 55 kids a copy of her children’s book — and a little inspiration. And then they’ll all head to Capitol Hill to share their own stories.

Kylie and the other pediatric patients are participating in Family Advocacy Day June 3-5. In the 21 years we have hosted the event, more than 1,000 families have travelled to Washington, D.C. to advocate for federal policies that support children’s health.

Kylie will tell members of Congress about how she had to miss out on birthday parties and school events for 15 years before she gained access to specialized care at Cincinnati Children’s. There, 17 pediatric specialists developed a new care plan that helped her go from frequent hospital stays to taking part in things other teens do.

“There is no way we could afford to see her many doctors if it were not for Medicaid,” Kylie’s mom Casey said. “Continuous coverage is huge for our family. It allows Kylie to receive specialized care in a supportive environment that helps her feel safe and heal.”

Half of all children in the U.S. are covered by Medicaid and CHIP, including many of the kids with complex medical conditions headed to D.C. this week.

Kylie and the other brave young advocates put faces to policies that affect millions of children.

Their visits help policymakers understand what’s truly at stake.

And their stories fuel our year-round advocacy efforts, reinforcing why investments in children’s health care matter and why prioritizing and considering the unique needs of kids and children’s hospitals saves and changes lives.

This year, our federal asks include:

• Protect and strengthen Medicaid and CHIP, which insure nearly half of U.S. children.
• Elevate healthy kids by opposing site-neutral policies, protecting the 340B program, investing in pediatric medical research, and ensuring robust appropriations for programs that advance children’s health.
• Boost the pediatric workforce, including bolstering funding for the Children’s Hospitals Graduate Medical Education program.
• Address the youth mental health crisis, including expanding youth-focused and community-based services.

Behind every ask are millions of children like Kylie whose lives depend on access to care.

By joining us in D.C., these families are helping ensure more kids can write their own stories of hope.

Learn more about CHA’s advocacy efforts.