Ian's Story: How the Medicaid Health Insurance Premium Payment Program Saves Lives

by Jodi Otbot

If you could meet my son Ian for five minutes, you’d be instantly captivated by his hugs and his smiles. Ian is a very easygoing eight-year-old, even in a household with five siblings! He’s a huge gamer and a big fan of music. Right now he’s very into playing silly songs from the Minecraft movie, and he loves singing along. 

Ian also has mitochondrial disease and other medical issues, which we found out very quickly when he was born. We’ve spent so much time at our local hospital as well as larger facilities and specialty clinics. He tires easily and uses a medical stroller to get around. Ian relies on a g-tube for his nutrition and has to wear a diaper and use a catheter because of incontinence. At home, nursing care is so critical for helping us care for him, especially overnight, where his nurses monitor him for seizures and make sure he gets his continuous feed. 

We love Ian to pieces, and work so hard to make sure he has the best possible quality of life, although it can be challenging because we live in a remote rural community. Getting to the Children’s Hospital of Philadelphia requires a four-hour drive one way and that can be a lot, because we’re back and forth so much. People sometimes ask why we don’t leave Tioga County to be closer to care, but it’s home and we have deep roots there. My parents and my sister live here, and we count on that support system. 

We also have to fight to make sure Ian can access his education. At school he has a great group of friends, and because his class size is small, everyone really gets to know him. He enjoys socializing and loves to go to school. Because our rural community lacks a lot of resources, medically complex children are not a priority in the district. Just getting to school is hard: He needs a van and a nurse to accompany him, including all day at school to assist him. Ian spends a lot of time out of class waiting to use the restroom and managing other needs, which takes away from his education and his opportunities to interact with other children. 

Four of my six kids are in school, and I spend a lot of time on child care and all the things you need to keep a household running while my husband works. I’m fortunate enough to be able to volunteer twice a week at the local teen center, working mostly with middle schoolers, and it’s so much fun. My husband works for the county here, and even with his decent income, things can be tight. 

As you can imagine, Ian’s medical care is quite expensive. We benefit from the Medicaid Health Insurance Premium Payment Program, which pays the premiums for Ian’s private health insurance through my husband’s employer. Medicaid also provides secondary insurance for treatments, equipment, procedures, and other needs that my husband’s insurance doesn’t cover. Without this support, it would be impossible to meet Ian’s needs, including making sure he stays at home with his family, living in the community and going to school. 

That program is so important for inclusion and it’s really critical that it continue to be available. It ensures that medically complex children receive the coverage they need to thrive, with Medicaid stepping in when his primary insurance refuses to cover a treatment. Medicaid also makes it possible to have the nursing services he needs. This is such a great program.

I wouldn’t trade Ian for the world. I vowed from the day we learned that Ian was going to be medically complex that I would always fight for him to get the same care and inclusion that healthy children get. Ian deserves the best life possible, the ability to go to school, enjoy sports, go to the movie theater. I want him to live the most fulfilled life, the most enjoyable life, that he can.