Medicaid Matters for Kids Mondays - Conner

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 Conner’s mom, Katiane. Conner is a Speak Now for Kids Family Advocacy Day alum and current patient at Children’s Specialized Hospital.

Conner was born premature at 25 weeks and experienced many associated conditions, including cerebral palsy, seizures, developmental delays and blindness.

Our lives revolve around accommodating his medical conditions—I devote every minute of each day to caring for Conner and taking him to countless doctor appointments.

We wouldn’t be where we are today without the vital coverage from Medicaid. Our family has private insurance and my husband’s history of military service qualifies us for TRICARE—a health insurance program for military members and their families. But even with these two forms of coverage, Medicaid is essential for Conner to cover his medical appointments and supplies. It helps fill the gap when our private insurance and TRICARE fail to cover certain needs, like many of the home-health services Conner needs.

Medicaid allows Conner to live at home with his family where he belongs. It provided a ramp for Conner to safely get in and out of the house. In the past, we had to carry him to the house in the rain and snow. We now have a home aid to help Conner with basic needs like toileting, bathing and dressing.

Conner often tells me “I want to walk,” and that is the only thing I cannot give my child. He loves physical activity and gets to fulfill that dream with his favorite physical therapist, Lauren Castagna, at Children’s Specialized Hospital. Though he may never be able to walk without a gait trainer and always be reliant on his wheelchair, Conner doesn’t allow his limitations to take away simple joys in life.

I am so proud of him! As his mother, I feel responsible to speak on his behalf and to improve access to care for all children. As Conner’s visits to the doctors, specialists and therapists reduced in frequency, I decided it was time to invest in the future of other children—I enrolled in a master’s teaching program. With the skills and knowledge I gained from the master’s program and caring for my son, I can now support other kids with complex medical conditions.

We must join forces to make children’s health a national priority. I was touched by the stories of so many families participating at Family Advocacy Day. Seeing over 50 patient champions come together for a common cause was extremely inspirational! I felt empowered to speak to our state’s congressional delegation and give voice to an issue that is all too often on the backburner. The experience of participating at Family Advocacy Day reassures me that children’s health matters, our efforts matter and our children matter!

It was very comforting to see our hospital CEO ask elected officials to safeguard Medicaid and reauthorize the Children’s Hospitals Graduate Medical Education (CHGME) program. My favorite moment was when a congressman asked our family “what else can I do for you?” It gives me hope to think that someone heard us and has the interest of children’s health at heart.

I have cried countless tears but I’ve come to realize that, instead of crying and complaining, I should take actions to make a difference. Other parents can join the efforts by contacting their elected officials and participating in local events that celebrate children’s health to support kids with complex medical conditions—kids like Conner.

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