Medicaid Matters for Kids Mondays - Ben
Speak Now for Kids is celebrating Medicaid’s 54th birthday with blogs highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Ben’s mom, Jen. Ben is a Speak Now for Kids Family Advocacy Day alum and current patient at Blank Children’s Hospital.
Ben was diagnosed with a rare disease called Duchenne muscular dystrophy (DMD) at age 3. His muscles are quickly breaking down and will not restore themselves, so every decision we make as a family must include Ben’s medical needs. We think about the small decisions like taking him to the playground—will Ben have enough energy to play, or will he get frustrated because his body won’t cooperate. We want him to have a happy childhood, despite the crippling effects of this terrible disease.
Overnight, our family went from being a normal and healthy family to a special needs family. Since our primary insurance doesn’t cover all of Ben’s needs, we rely on Medicaid to make key services available for him. His drug costs are expensive, and he’ll require multiple medications and medical equipment moving forward. Without good insurance options—like Medicaid or access to our primary insurance with pre-existing conditions—our family would face serious financial effects.
We didn’t intend to be health care advocates, but it naturally happened after Ben’s diagnosis. We often found ourselves sharing Ben’s story and his need as we try to improve our son’s medical condition and health coverage. We want to share our perspective of raising Ben with other parents in the community and why or how programs like Medicaid are so important to our family.
There are many ways other parents can join to make children’s health a national priority. First, be sure to share the importance of health care coverage for kids with your elected officials. This includes both safeguarding Medicaid and ensuring that pre-existing conditions are covered under insurance programs.
We traveled to Washington, D.C., during Speak Now for Kids Family Advocacy Day to help elected officials understand what health coverage means to our family. We wanted them to recognize the need for Medicaid and affordable health coverage for kids with pre-existing conditions. I hope that my children will one day remember our trip to D.C. and how critical it is to advocate for children’s health.