Sharing the Journey with Jeneva: Laura Robeson on Medicaid Expansion

Laura Robeson lives in Prairie Village, Kansas, with her son, Danny, age eight, and her husband. Laura has an M.Ed. in Elementary Education from Rockhurst University and, while she currently stays home with Danny, considers herself a lifelong educator. Laura attended the 2019 State of the Union Address as the guest of U.S. Representative Sharice Davids to honor Laura’s work in health care advocacy.

Laura began her advocacy journey in 2014, fighting then-Kansas-Governor Brownbeck’s tax experiment, which would have reduced state funds for health care services. Currently, she’s working with state legislators to pass Medicaid Expansion, an option available to states under the ACA.

Tell me about your family.
We are a family on the go! Danny loves meeting people and seeing his friends at the grocery store, library, and swimming pool. Danny truly connects with people and builds community. His smile is contagious, and he brings joy everywhere he goes. I am proud of the fact that I’m known as "Danny's Mom." He can be pretty stubborn, too! His memory is long, and he’s often displeased when we leave his favorite places to go home. Danny makes you feel happier just being with him.

Tell me more about Danny: What are his medical needs?
Danny was born prematurely and has been diagnosed with spasticity, quadriplegic cerebral palsy, epilepsy, and cortical vision impairment. He uses a wheelchair to get around, a g-tube for nutrition, and requires constant monitoring due to his risk for seizures.

How would the lives of Kansans with disabilities improve if the state were to pass Medicaid Expansion?
Danny qualifies for KanCare, a Medicaid waiver program for children with disabilities; however, there are many more Kansas families, especially caregivers, who need Medicaid coverage. There are thousands of families across our state who rely on a family member for caregiver support. These people take breaks from their jobs and careers, or juggle full- and part-time work, in order to take responsibility for the care of disabled and medically complex loved ones. Medicaid Expansion would ensure that caregivers receive the health care they need to stay healthy.

What steps have you taken as an advocate to bring about change in Kansas? What have you found works best when communicating with state legislators?
My advocacy started in 2015 through my school district's Special Education PTA. During this time, our state revenues were collapsing due to the failed Brownback trickle-down economics "tax experiment." I wrote letters to state legislators, went to forums, and educated myself on the issues. I spoke with legislators and candidates and shared our story. I then volunteered for state legislative campaigns in 2016 by canvassing and phone banking. Oftentimes, I brought Danny with me. Danny LOVES meeting people at their doorstep!

During the battles for the ACA in 2017, I began visiting local U.S. Senate and House offices to share our story. While it may be easy to dismiss facts and numbers, it is very hard to dismiss the people actually affected by policy decisions. I spoke at multiple health care town halls and protests and continued to share our life story. After my U.S. Representative voted for the disastrous ACHA bill, which would have decimated ACA protections and Medicaid, I knew I needed to work toward change in our congressional representation.

Danny and I spent countless weekends campaigning for Sharice Davids, sharing our story through canvassing and at health care events. While it was never easy to make the personal public, I always asked myself the same questions: "If not me, who? If not now, when?” I’m pleased that Danny and I were part of the hard work of our entire community that helped elect Sharice Davids in 2018.

How have you engaged Danny in self-advocacy, and/or how do you hope to engage him in self-advocacy in the future?
Danny loves speaking with people, and I always ask for his input. To the best of my ability, I center Danny's experience. This is his life story.

How has advocacy given meaning to your life?
I often feel like an "accidental advocate." It certainly was never in my plans. If our story and our participation have moved the needle toward a more equitable and just health care system, it has certainly been worth it. I have been honored to meet and fight alongside amazing families and self-advocates. I’ve found strength in their willingness to stand up and speak out, and they’ve pushed me to go the extra mile when it was hard. I am forever grateful for their friendship and support.

If you could define advocacy in a single sentence, what would be your definition?
Advocacy is using your story and experience to impact change.

We hope you enjoyed the second installment of Sharing the Journey with Jeneva, a new feature on our Little Lobbyists blog. Through these interviews we will share the advocacy journeys of caregiver/parents and disability self-advocates, inspiring us to forge ahead together. Send an email to Jeneva if you have any questions you'd like to see, or if you'd like to be interviewed for a future installment of this series!

Jeneva Stone is the manager of the Little Lobbyists blog. She's worked as a teacher, a government editor, and a Hill staffer. Jeneva is also a writer, with numerous publications in poetry and nonfiction. She lives with her son Robert, who has complex medical needs and disabilities, her husband Roger, their two cats and a dog in Bethesda, Maryland. Her second child, Edith, is currently a student at Middlebury College.