Charlie's Story: Medicaid Builds A Future for Medically Complex Children

by Maggie Gladson

My name is Maggie Gladson. I live in New Oxford, Pennsylvania, just outside of Gettysburg, with my husband Chip and our three beautiful children, Stella, Mina, and Charlie. Our family is incredibly closeknit, loving, and supportive. 

Charlie is an amazing kid. Our family’s world has expanded in many unexpected ways since Charlie was born thirteen years ago.  His wicked sense of humor, his mischieviousness and his stubborn streak are some of the reasons Charlie has survived and even thrived! We never have to worry about Charlie being forced to do anything he doesn’t want to do.  Music is favorite activity – he listens to music to regulate his emotions, plays the piano and bangs on his drums to express himself. 

Charlie is a celebrity in our small town.  It’s a common occurrence to be out at the grocery store or coffeeshop and  have people come up to say “Hi Charlie!, ” even if I don’t know who they are.   He’s just a magnetic kid.

When I was 20 weeks pregnant, they discovered that Charlie had hypoplastic left heart syndrome: He’s the full left ventricle of his heart. We knew that he’d need extensive medical care almost as soon as he was born, and arranged to give birthat the Children’s Hospital of Philadelphia. Shortly after birth, he was also diagnosed with Cornelia de Lange Syndrome. In a  stroke of luck, a CHoP geneticist who specializes in CdLS and similar syndromes  met Charlie on his second day of life.  

Charlie’s heart required three surgeries and ongoing monitoring, since it’s not possible to correct HLHS. CdLS affects basically every system in his body, and the side effects of some of his medications can also cause problems. Charlie needs medication throughout the day via his g-tube and constant observation and care so we can identify problems quickly. He has fallen ill very quickly and with little warning several times.  He’s also nonverbal and uses an program on an iPad to communicate with us.  He’s especially good at using it when he wants something like “rice pudding” and “fig newton.” 

At the time of Charlie’s birth, a hospital social worker helped us apply to Medicaid. It was clear that Charlie will need extensive care over the course of his life. We knew nothing about Medicaid before Charlie. Because of Medicaid, Charlie has the services and supports he needs to thrive, and most days, he’s engaged, happy and learning.

At school, Charlie requires a nurse and an aide, and he also receives physical therapy, occupational therapy, and speech therapy there. His aide works with Charlie and his teacher to develop lessons appropriate for him so he can participate in class. He is also eligible for home nursing. Nurse Katelynn  has known Charlie since he was four months old and she’s one of his favorite people. He will do anything for her! At home, his nurses help him with tasks of daily living like feeding, mobility, bathing, and dressing, as well as monitoring his health.

This care is essential for his education and future, but it’s also important for me. I am a legal services director for a nonprofit here in DC and would be unable to do this work if I was providing full-time care to Charlie at home. I’ve been in this field for over 20 years and it’s important to me to continue this work. Charlie’s care has already cost millions of dollars.  The first time I saw a bill for one of his heart surgeries, it became obvious that we would have been in dire financial straits without this support. My husband has great insurance but even with that coverage, we would be bankrupt without Medicaid. His Medicaid waiver covers his insurance premiums and also steps in with coverage for essential services that his regular insurance won’t provide, such as occupational and speech therapy, so Charlie can receive the full spectrum of care. No one in our family has experience with medically complex children and all that entails. We’re grateful to all of the people who have stepped up to help us navigate this world. 

Sometimes neighbors say to us “of course they won’t cut Charlie’s Medicaid, he obviously needs it!” Whose child do you think should lose Medicaid instead? No family should have to worry about losing critical supports for their children.  There are already so many barriers to accessing Medicaid, we already have a system that determines who needs  it. Insurance and Medicaid specifically are difficult to navigate. A single mother, busy families working multiple jobs, or parents with limited English proficiency can really struggle with applying for Medicaid and dealing with the constant paperwork and coordination. They’re already not getting the benefits they’re eligible for and I want to use my resources to advocate for them. Cuts to Medicaid would make it even harder for them, and could result in a lot of kids losing their care. As Charlie has entered his teenage years, we are also very concerned about losing Medicaid-funded programs that are designed for high school graduates and adults.  Day programs, job training, whatever is in his future — we want to give Charlie the best odds for a great quality of life within his community.