The conversation usually runs the same way. “Hello, my name is Susan Stearns, and I’m a constituent calling from Oxford. I’m calling to urge the senator to do everything he can to protect Medicaid. I have a severely disabled child. My family depends on Medicaid to cover the services he needs to stay healthy and live at home.” On the other end of the call, a twenty-year-old intern thanks me for my call, promises to pass the message along to the senator, and hangs up. Back in Mississippi, I put away my phone and return to waiting for the physical therapist to walk out with my son.
Finding moments to call to advocate to protect Medicaid can be tough, so I tend to pair them with moments when I’m thinking about my children’s healthcare—and those moments are frequent. I have nine-year-old twins, one with severe cerebral palsy. He cannot roll, crawl, sit, or walk. He uses a wheelchair for mobility and a modified hospital bed to sleep. He’s fed via a tube surgically implanted in his stomach, he’s legally blind, has increasingly frequent seizures, and struggles to regulate his body temperature. He requires around-the-clock care—both to monitor for seizures and to make sure he’s rolled over every three hours overnight, as he cannot do it by himself.
The litany of things my son cannot do is extensive. So, when I think about Medicaid, I tend to think about the things that it enables us—all of us, my son with cerebral palsy, but the rest of the family as well—to do. It helps us keep him healthy by paying for the expensive machines that keep his lungs functioning and his body strong. It helps us keep him safe by providing the nurse who administers his emergency seizure meds and monitors him for side effects.
Medicaid helps us sleep. It has been nine years of sleepless nights at our house, but the nurse that Medicaid provides, who helps tend to him overnight, four days a week, has made a massive difference to the whole family. Thanks to Medicaid, my son has a safe place to go after school, allowing my husband and me to work full-time. It has enabled us to attend school events and have the energy and time our other son deserves. In short, my family depends on Medicaid.
Currently, Congress is debating cutting funding for Medicaid nationwide. For my family, cuts to Medicaid will be devastating. Meanwhile, if the cuts pass, Mississippi will lose providers and medical facilities, and finding care will become even more difficult than it already is—especially for pediatric services, as Medicaid currently covers one in two of Mississippi’s kids. Congress members—our representatives and two senators—need to know how we feel about this. But finding the time to call, as well as knowing what to say, can be tough.
I’ve created a program called “Medicaid Cares for Mississippi” for that reason. The program’s goal is to lower the barriers to advocacy for the people affected by cuts to Medicaid—and that means all of us. The program distributes ready-to-mail postcards. On the front, they say, “Medicaid Cares for Mississippi.” On the back, they are pre-addressed to one of Mississippi’s senators, stamped, and ready to send. They also include a space for the person sending the postcard to let the senator know why Medicaid matters to Mississippi—what it means for us, our families, and our communities. We designed the postcards to be a quick, accessible form of advocacy for as many people as possible.
I’ve partnered with parents, clinics, physicians, behavioral therapists, churches, and other community organizations to get these cards into as many hands as possible so we can send Washington a strong message that Medicaid matters to Mississippi. If I’ve learned anything from parenting my son, it’s that I can use all the help I can get, and I know I cannot do this alone. If you’d like to partner with us, either by donating money to the effort (a postcard costs $0.89, including the stamps) or by receiving some postcards to distribute yourself, you can contact me at medicaidcaresformississippi@gmail.com or donate to our gofundme at https://www.gofundme.com/f/spread-the-word-medicaid-cares-for-mississippi. My son, my family, and Mississippi will thank you.
This is a guest post by Susan Stearns of Oxford, Mississippi. Learn more about Medicaid Cares.
