Katie Doderer's Story Challenges Medicaid Stereotypes

This is part of our series reflecting on 20 years of Family Advocacy Day. Learn how the experience impacted our former child advocates.

Katie Doderer was a shy kid.

But she spoke up and felt heard when meeting with members of Congress during the Children’s Hospital Association’s Family Advocacy Day (FAD) in 2013.

A harpist, Katie now teaches music at a middle school.

“It can be intimidating being in a room of adults,” the now 27-year-old remembers. “But if you’re nervous, that means you care.”

That’s what she tells her orchestra students when they get the jitters before a concert.

“I’ll say ‘it just means you care about what you’ll sound like — and that’s a good thing’,” said Katie, who teaches at a Title 1 middle school outside of Chicago.

A lot has happened in the dozen years since Katie participated in FAD. She graduated high school and college and earned a master’s degree in music education.

Some things remain the same. The Children’s Hospital Association (CHA) and families like hers are still fighting to protect and expand Medicaid.

Katie has congenital central hypoventilation syndrome, a rare genetic disorder that affects the body's ability to regulate breathing. She has a trach and relies on a mechanical ventilator around the clock.

From birth through eighth grade, she needed 24-hour nursing. In high school, Katie wanted to manage her care on her own, so she only had a nurse at night. Medicaid covered the costs of her nursing care all those years.

She also had private insurance through her mother’s work as CEO of Arkansas Children’s Hospital, but most private insurance doesn’t cover the nursing services or supplies Katie required.

“When people think of who the typical user of Medicaid is, I might not fit the stereotype. I’m from a higher-income family. I’m cognitively normal with my peers. And I had private insurance,” she said. “I think being able to share my story gave a broader expanse of who uses Medicaid.”

Doderer said she’d tell patients and families at this year’s FAD, “You have everything you need. You’re not going to be quizzed on in-depth rules of Medicaid — CHA has all that covered. All you have to do is speak your truth.”

Katie said meeting with lawmakers at 15 taught her that her voice matters. It’s true in local politics, where she’s getting more involved, and in her classroom. She’s been teaching for three years and loves to watch her students grow in their skills and confidence.

When she isn’t surrounded by middle schoolers, Katie is working her way through cookbooks, adding sticky notes with ideas of what she should change next time. Her biggest culinary success so far: shortbread cookies with rosemary, olive oil, and chocolate chips mixed in and granulated sugar sprinkled on top.

About Family Advocacy Day  

The Children’s Hospital Association is celebrating its 20th year of hosting Family Advocacy Day. Each summer, patients and their loved ones meet with federal lawmakers in Washington D.C. Together with children’s hospitals, we elevate their voices and advocate on important pediatric health care issues.