Zoey

Age 6, Maryland

Meet Zoey. Someday Zoey hopes to be a famous rockstar. She enjoys karate and is learning to skateboard too! Zoey loves to play and make friends, she has fun wherever she goes! Zoey really enjoys school. Her Individualized Education Plan (IEP) ensures she has accommodations she needs for hearing and vision impairment, and nursing to support her so she won’t miss a thing.

Zoey has Stickler Syndrome which includes Pierre Robin Sequence (PRS). She has a trach and feeding tube due, has difficulty protecting her airway when she swallows and is at risk for aspiration. She’s vision- and hearing-impaired, and also had an adrenal insufficiency.

For Zoey and her family, access to quality healthcare means: getting answers; being able to seek new specialist consultations with ease and no forms or referrals and having her parents’ opinions valued and made part of Zoey’s care plan. Zoey’s mom says, “Zoey needs coverage for pre-existing conditions and protection against lifetime caps. While we hope extended inpatient stays are behind us, we never know how bad the next flu season will be. Vigilant care of her airway is what keeps her healthy and home where she belongs. A Medicaid waiver covers costs excluded from our employer plan, allowing us to use private duty nursing overnight. Medicaid also contributes to the public school system so a nurse can be in the classroom with Zoey, providing a safe environment for Zoey to learn and make friends!”

For children like Zoey, Medicaid, employer-based health insurance, and the Affordable Care Act work together to insure they have the health care they need to thrive.

Submitted by Mary Beth, Zoey’s mom