My Son is Uninsured with an Underlying Heart Condition.
Updated: Jun 12
By: Hollie M., Seminole County
My son’s father died when he was just two years old. He received Survivor Benefits until he graduated from high school last year. He also received Medicaid as insurance which continued beyond graduation. We were told that he would have Medicaid until he was 23 years old. We were shocked when his insurance suddenly stopped in February 2020.
My son was diagnosed with mild mitral valve prolapse when he was a toddler and has been under a cardiologists’ care all his life. When he had a sports physical in the 11th grade, they found that he had an enlarged heart. In June he went to the ER and was diagnosed with pneumonia -- that’s when doctors picked up something on his EKG. By February he was working with cardiologists to determine his treatment and run more tests. He had aged out of seeing his pediatric cardiologist and was being treated as an adult. The new cardiologist reviewed all of the medical records and test results that I had saved over the years. He was concerned that my son’s blood pressure had consistently been high, but it had never been addressed. The cardiologist recommended that my son see him at least twice a year. He was at his appointment to have his bloodwork done and get a halter monitor when the office staff told him his Medicaid had been canceled. He couldn’t finish the tests or get the results from his Echocardiogram. That was really a blow! How’s he going to complete his tests and get help when he doesn’t have insurance? We wouldn’t be able to afford it. He wouldn’t. I wouldn’t. I would if I could.
My son never received notification from the Medicaid office that he had lost his Medicaid coverage. He’d just been at the doctor’s office the previous week, and there were no issues with his Medicaid. The Medicaid office did send us a letter saying that he could get “Share of Cost” Medicaid, but I’ve been on that before. It’s useless. I still have unpaid medical bills from the Share of Cost program because the bills were too high for me to pay.
I’m in a wheelchair and can’t walk. In 1994 I was approved for Social Security Disability and Medicare came a year later. I realize that I’m very fortunate. I was on a waiting list for long-term care with Medicaid for four years and was finally approved in 2015. I have a social worker and home health nurse that visit me weekly. My social worker has tried to help me get my son some health insurance, but we have not been successful. When he lost his insurance the Medicaid office told us to call the Marketplace. We called and completed an application, but they said that he made too much money to qualify for help. I told them that was impossible because he only works 20 hours a week and lives with me. They offered him a plan that cost $200 a month with a $7,000 annual deductible. How in the world can he afford that? The basic coverage for his car insurance is $166 a month. He can’t take on another bill.
We’re in a dilemma with his healthcare situation. The health insurance system is hard to understand and it’s confusing. I’m not sure how it all works. We need advocates to help us through it all. Now, with this Coronavirus happening, I just worry about him all the time. My son has an underlying heart condition. How would this virus affect him? Yesterday he asked me, ‘are they going to let me die’ if I go to the hospital. Do you know that made me feel as a mother? I feel like he is too young to slip through these cracks. We don’t know what to do. Hopefully he will stay as healthy as he can. I’m grateful for what we have, but I’m scared for the future.