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Medicaid Matters for Kids: Meet Kevin

We were honored to have Kevin join us for Family Advocacy Week in 2021 and recently reached out to mom Autum for an update as part of our Medicaid Matters for Kids Series.

At Kevin’s six-month appointment with his pediatrician, there were a few milestones he hadn't quite met, but the doctors said they would reassess at nine-months-old. However, before that appointment Kevin was accidentally dropped at daycare and a skull fracture sent him to the ER.

A CT scan identified congenital bilateral perisylvian syndrome (CBPS), a rare neurological disorder characterized by developmental delays and epileptic seizures. An MRI and neurologist also identified pachygyria, a developmental condition due to abnormal migration of nerve cells in the developing brain and nervous system.

It's been a long road. Over the years Kevin has undergone many diagnostic studies and surgeries at Le Bonheur Children’s Hospital. He currently sees nine specialists that help manage his care. “Things are constantly changing,” says Autum. “It could be a new diagnosis, updated recommendations, or ever-changing medication regimens.”

Kevin is now 14-years-old and overall doing quite well. In 2021, Kevin had a long-awaited surgery on his airway and is now able to take in liquid nutrition by mouth rather than relying solely on his G-tube. 

While Kevin’s siblings are covered by commercial insurance, Tefra Medicaid helps the family defray expenses for Kevin’s medical treatments. “Kevin requires physical, occupational, speech and Applied behavioral analysis (ABA) therapies,” explains Autum. “Many commercial insurances, including ours, place annual limits on the amount of therapy an individual can receive — and those limits would not even come close to covering the amount of therapy Kevin needs.”

Autum added, “In addition to therapies, the cost of testing, surgeries, hospitalizations, ER visits, medications, and medical supplies that keep him healthy would definitely be a financial hardship on our family. I cannot imagine what our out-of-pocket expenses would be without Medicaid.”

“We have even encountered instances where Medicaid covered expenses that our commercial insurance wouldn’t have covered at all,” said Autum. “Medicaid also allows Kevin to see all of his specialists in one place — Le Bonheur Children’s Hospital. If not for the Medicaid coverage, we would have to travel twice the distance to Little Rock to receive care for Kevin.”

Follow @SpeakNowforKids on Twitter each and every Monday to learn more about #Medicaid and why #MedicaidMatters for so many children in our nation.


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