Mallorie Hatcher, Johnson City

Hi my name is Mallorie Hatcher from Johnson City, Tennessee. I work fulltime as an Occupational Therapist and my husband Robert, who was my highschool sweetheart, works as a firefighter. We are proud parents of 7-year-old daughter Londyn and a 5-year-old son Nolan. I am writing today to speak on behalf of my son Nolan and all children with complex medical needs and disabilities. Nolan started kindergarten this year. He loves dirt bikes, music, vacuum cleaners and choo choo trains. Nolan has a microduplication on his 17th chromosome at the p arm of 13.1 to 13.2, it is classified as a rare chromosome disorder. If you saw him you would assume he is much younger than he is due to his slow growth. Nolan has feeding difficulties (requiring supplemental nutrition through his feeding tube), global learning delays, chiari malformation (requiring yearly MRIs and possible nuerosurgery in future) and epilepsy (requiring daily medication). He has multiple hospitalizations and surgeries during his life. He has more than a handful of specialty physicians and regular speech and occupational therapy sessions in order to help him best thrive.

Tennessee has a history of being a low tax and underserved state. For instance my son Nolan, despite having complex medical needs and disabilities, has never been eligible for any form of Medicaid in the state of Tennessee. In fact our state falls far under the national average in terms of coverage for individuals with disabilities. Our family like many others have been fully dependent on private employer insurance for my son’s care. Medically necessary services like therapy, specialized formulas and medical equipment are not covered. This is in addition to already high deductible and out of pocket expenses has put our family in significant medical debt. This past year we had the opportunity to advocate at the state level to get a much needed Bill passed in our state. We all courageously came together and worked to get a Medicaid waiver passed in Tennessee specific for children with complex medical needs and disabilities. I no longer felt alone and families like my own felt heard and supported. We felt like our leaders were beginning to understand the reality and shortcomings of our state when caring for a child with complex medical needs and disabilities. When learning of Amendment 42 to fund Medicaid through a Block Grant we felt betrayed. We are scared once again, but we have hope that we are once again able to come to an understanding that Medicaid is a life saving program (not an experiment) and that our children’s lives matter. My son has a genetic condition, he will not outgrow this. Reality is my son will one day grow up to be an adult with a disability. His life will depend on his access to life saving medical care to survive and thrive to his best potential. Access to healthcare should be a human right, not a privilege.