Finding Our Voice: Testifying for Medicaid and the Power of Sharing Our Story
- Ashley Burkman
- 19 hours ago
- 2 min read
A Long-Awaited Lifeline
My son Carter, who lives with LAMA2-CMD, was finally awarded a Medicaid waiver called Katie Beckett after nearly six years of waiting. That moment changed everything for our family. It meant we were no longer drowning in medical premiums and deductibles just to access the care he needed. Instead, it gave us the ability to use our resources for the many things insurance simply doesn’t cover.
Two Minutes to Be Heard
Recently, Carter and I were given the opportunity to testify before the Connecticut Appropriations Committee about Medicaid and what it means for families like ours. We were there to help encourage continued support for a program that so many depend on. Ahead of time, we were told to keep it brief, stay composed, and inspire—all within two minutes.
I spoke quickly, trying to fit as much as I could into that short window. I held Carter’s hand to stay grounded and keep from getting emotional.
And then something happened that I did not expect.
The chair of the appropriations committee began to tear up. She paused, then chose to speak directly to Carter. She asked him questions. She thanked him. And then she invited the entire room to clap, for him, for us, and for the courage to share a story like ours.
It was one of those moments that stops you in your tracks. Even our local children’s hospital government relations team was shocked. Carter and I were too.
Representing Our Community
At that moment, it really hit me how powerful our story is, not because it is unique, but because it is shared by so many families who are simply just trying to take care of their kids.
We were not just speaking for Carter. We were speaking for so many others who rely on Medicaid every single day.
The Power of Storytelling
If you are a parent or caregiver who has ever thought about speaking up but felt unsure, I get that. It is uncomfortable. It is emotional. It can feel like a lot of pressure.But your story matters more than you think. You do not need to say everything perfectly, you just need to be willing to show up and be honest.
That is what people connect with.
Moving Forward with Purpose
Walking out of that room, I felt proud. But more than that, I felt a deep sense of responsibility. We are in a position to help others simply by sharing what our lives look like.
And that is something I will continue to do. And I hope more families in the CMD community feel empowered to do the same.
To learn more about the Burkman family’s journey—including how Carter and his twin brother Calvin are growing up side by side and redefining inclusion—we encourage our community to read Ashley’s feature on RARE Revolution. It’s a powerful example of how lived experiences can shape understanding, build empathy, and inspire change.
