Medicaid Was the Only Insurance That Tried to Save My Daughter

From the start, each of my twins, Roan and Lula, were different in every way. In 2010, Roan burst onto the scene with a garrulous yelp; his sister was shatteringly silent. The reason became clear in time. Lula had a de novo genetic mutation, which means that it was not inherited and therefore could have afflicted any baby. It disabled her in a multitude of ways, none of which showed up in any prenatal tests or sonograms. Suddenly, we entered two parallel universes: parenting a healthy child and parenting a disabled child, and, with them, forced into the morass of American healthcare.

Within 18 months, Lula was covered first under private insurance, then a state HMO and, finally, when neither could cover her costs, Medicaid. Our experiences with each are why I am terrified by Paul Ryan and Tom Price’s proposals to rein in Medicaid spending through block grants to states, which could lead to widespread cuts to the program. For many disabled children in the U.S., Medicaid is not “insurance” in the sense of being there only if you need it, because there never was an "if". Lula’s life depended on a network of medical experts, therapists, supportive equipment and caregivers that we otherwise would not be able to afford. Deny a disabled person’s right to uncompromised care, and you might as well deny their right to exist.

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