Medicaid Matters for Kids Mondays - Cici

Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week, we spoke with Cici’s mom, Jenny.  

At 11 months old, Cici choked on a piece of fruit. Her mom quickly called 911. During the 11-minute ambulance ride to the hospital, Cici’s heart stopped. Within the hour, a helicopter airlifted her to Children’s Hospital Colorado where the pediatric intensive care unit managed to stabilize her.

We went from having a typical child to having a severely disabled child overnight. My daughter suffered hypoxic brain damage from the choking accident, causing her to be physically disabled. Her brain doesn’t communicate with her muscles well, and she struggles to keep her airway open enough to breathe on her own. She cannot walk or talk, and relies on a feeding and breathing tube.

Children’s Colorado allows us to access all pediatric specialists at the same place. The doctors and nurses there coordinated well for complex procedures, like the spinal fusion she had a year ago. Cici’s condition has progressed tremendously since entering treatment at Children’s Colorado. It took a few years to get her new life under control, but she is now in a stable place. She rarely goes to the doctors and only gets admitted for surgeries. We have things under control at home, and only call the experts when needed, without having to physically go to the hospital too often.

Her accident changed our entire lives. She has an identical twin, an older brother and a younger brother. We all learned how to meet her extensive needs, not just physically but emotionally and mentally. Normal activities like vacations or date nights are complicated to organize, and therefore don't happen very often. We have had to pick our battles, so to speak, and really put a lot of thought into what works for our family. We had to adjust the kind of house we live in and where we live because we need our house to be accessible for Cici.

Cici qualifies for a Medicaid waiver, meaning that she has access to Medicaid due to her disabilities and our income does not factor into qualifying her. Medicaid is our secondary insurance and they cover many things that our private insurance denies or doesn't cover. This includes nursing for Cici to attend public school. It also covers other necessities like feeding tube supplies and formula, wheelchair and a communication device, and weekly therapies when our primary insurance hits the limits on therapy coverage.

I try to tell people our story as often as I can. Medicaid has made it possible for us to lower all costs for Cici. We are a dual income family, college educated, and we are still dependent on Medicaid to make sure Cici's needs are met. We are not that typical family you think of that would rely on Medicaid, but here we are, a middle class family with a disabled child on Medicaid.

Without Medicaid we would be in a tough place. We are all one accident or diagnosis away from needing these kinds of supports. It can truly happen to anyone at any time. It happened to us. So parents, please speak up! Get involved, vote, share your story, and put faces to these issues to help politicians understand that no child should lose access to care because of changes to Medicaid.

Cici is almost 11, almost 10 years out from her injury and she is rocking it! She is sassy and “tween-like” and loves to see her siblings get in trouble. She is a typical child trapped in a body that doesn't work for her. She is the most laid back, brave and resilient child and we are so grateful we are able to see her grow. We are just starting to see the person she is as we are learning to communicate with her over the past few years. She is, like all of my kids, just amazing. Blows me away every day!

Read Cici’s full story.

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