Medicaid Matters for Kids Month -- Lily's Story

Throughout the month of March, Speak Now for Kids is celebrating Medicaid Matters for Kids Month with posts highlighting the importance of Medicaid in children’s access to health care.

Today’s post was written by Lily’s mother, Chrissie. Lily has STAR Syndrome. A very rare condition, she was the ninth person in the world to be diagnosed with STAR Syndrome. This rare X-linked syndrome is characterized by syndactyly, a condition where two or more hand or foot digits are fused together; telecanthus; an increased distance between the medial canthi of the eyes; anal or genital malformations; and renal issues.

LilyBlackburn.JPGOver the last year we have started to see a slight decline in her kidney function. However, I am happy to say that Lily is doing well at school, enjoying swimming therapy, and reading lots of books! She is still and will always be fighter, not a day goes by that I do not tell her how proud I am of her.

It is hard to imagine where we would have been as a family without Medicaid. In the beginning of Lily’s life, there were so many tests, surgeries, hospitalizations, therapies and much more. Without this type of coverage, we certainly would have been broke as a family and may have had to make some very difficult decisions in Lily’s care. We are grateful, as her parents, that programs like this exist and give children with medical complexity, like Lily, health care that is affordable, and health care that is accessible.

Over the last year, we have made personal family progress and Lily’s primary insurance is now private; however, her secondary insurance is CareSource; a managed care plan that is a branch of Ohio Medicaid. This serves as a “safety net” for Lily and our family just in case her private insurance does not cover a medical expense. Lily has this wrap around Medicaid waiver due to her kidney disease and other underlying heath issues related to STAR syndrome.

What makes me most nervous is, as a result of our family progress, that it’s quite possible Lily could lose the waiver and will no longer have a “safety net” insurance. This is a frightening place to be only because there may be a medical expense that is not covered by her private insurance. If that happens and we land in a place where we need to pick and choose about decisions in her health care, there is a possibility of losing doctors who are not covered with her private insurance -- this would be devastating because they are like family -- and also of financial distress. I also know that there are thousands of other families in this position that have to continuously work to get a waiver for their child with medical complexity.

I am grateful for the time-being that Lily currently has CareSource, but it concerns me that families who make personal progress run the risk of losing so many important resources that may help to assist with a child with medical complexity. Just because a family makes one dollar over the poverty does not mean they can afford or have access to another insurance and health care.
I hope that programs like Medicaid continue to serve families and children with medical complexity in a positive way. These children are mighty and special! It is as Lily’s parents and in our experiences that we advocate to keep extremely important programs, like Medicaid, accessible and alive.

Share you own story about how Medicaid has been an important lifeline to your children’s health care. Visit the Stories About Kids Health Care page today.

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