Medicaid Block Grants Betray Families Like Mine (by Mallorie Hatcher)
Mallorie and her family. [image description: A family, including a mom, a young boy and a young girl, pose in front of a rustic photographer’s backdrop that includes hewn logs. The family wears coordinating navy blue and white plaid button-down shirts. The family dog, a large white curly-fur breed, poses with them.]
An Open Letter to the Centers for Medicare & Medicaid Services (CMS):
My name is Mallorie Hatcher from Johnson City, Tennessee. I work full-time as an occupational therapist. I am the proud parent of a nine-year-old daughter, Londyn, and a seven-year-old son, Nolan. As a member of Little Lobbyists, I am writing today to speak on behalf of my son Nolan and all children with complex medical needs and disabilities.
Nolan started first grade this year. He loves dirt bikes, music, vacuum cleaners, and choo choo trains. Nolan has a microduplication on his 17th chromosome. 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 future neurosurgery), and epilepsy (requiring daily medication). He has had 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, has 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 in addition to already high deductible and out-of-pocket expenses has put our family in significant medical debt.
Starting in 2019, our family had the opportunity to advocate at the state level to get a much needed bill passed in our state. I took my children to meet our state legislators, wrote emails, and engaged the public. My family courageously came together with the Tennessee Disability Coalition, the Tennessee Justice Center, and other families and groups, all working to get the Katie Beckett waiver passed in Tennessee, which is 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 as if our leaders were beginning to understand the reality and shortcomings of our state when a family cares for a child with complex medical needs and disabilities.
Mallorie, at left, poses with other members of Little Lobbyists Tennessee chapter. From left to right, Mallorie, Jessica Fox, Michelle Gross, and Asher. The group spoke at a town hall for Stop the Block. [image description: Three moms wearing grey and teal Little Lobbyists t-shirts pose with a young disabled girl who wears a pink Little Lobbyists t-shirt. One mom holds a framed photo of her daughter. They are in a conference room.]
When learning of Amendment 42 to fund Tennessee’s Medicaid program entirely through a block grant, we felt betrayed. While legislators say that the amendment will not impact the Katie Beckett Waiver for its first three years, Medicaid block grants are historically devastating for individuals with disabilities. For example, prescription medications could be limited, and other caps could be placed on medical care. Block grants will likely limit the number of children ultimately served in the future of the program. In a state that is historically not known for taking care of individuals with disabilities, it is scary to lose federal protections for our children and others with complex medical needs and disabilities. As Little Lobbyists, we advocate for all.
We are scared once again, but we have hope that we will once again be able to come to an understanding that Medicaid is a life saving program (not an experiment) and that our children's lives matter. Along with the Tennessee Justice Center, our families continue to speak out against the use of block grants in Tennessee, and are hopeful that the Centers for Medicare & Medicaid Services under the Biden Administration may yet overturn Tennessee’s decision. I feel reassured that the Biden administration has prioritized healthcare and disability rights. I hope we are able to work together and put a ban on unethical Medicaid block grants.
My son has a genetic condition: he will not outgrow this. The reality is that 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. A price tag should not be put on any life. My story only gives a small glimpse into why this is a bad idea. Allowing block grants in a state that is already highly underserved is a recipe for disaster and could result in rationing of care among its most vulnerable residents.
Bottom Line: This is a harmful proposal that cannot be fixed. It goes against the goals and purpose of the Medicaid program. I respectfully urge you not to go forward with this harmful proposal.
Mallorie Hatcher is a member of Little Lobbyists who worked to get a Katie Beckett Medicaid waiver passed in Tennessee where she lives with her family.