Feeling Penalized for Having a Disability
Updated: Apr 9
By: NJR., Martin County
I have lived with autism, seizures, and an anxiety disorder for most of my life. I was officially diagnosed when I turned 16 years old. For years, teachers told my mom that I was probably developmentally delayed because I don’t do well with testing.
Children with autism typically have high IQs and while mine is not high, I function well above it. So, there was always a lot of confusion around my diagnosis. I had health insurance through my mom and dad when I was younger. After high school, I was placed on the Medicaid Share of Cost program and that worked well for me.
The biggest trouble was the paperwork we had to fill out each year. In 2012 about 10,000 Floridians were moved off the Share of Cost program without being notified. I was one of those people. My mom took me to the health department for a doctor’s appointment, and we were turned away. I had lost my Medicaid coverage. At that point we had to start paying out of pocket for my doctor’s appointments and medication.
Currently I receive help through my local Epilepsy Association. They cover the cost of my seizure medications and the cost to see a Neurologist. I keep a log of my seizure activity and anxiety level to share with my Neurologist. I would not be alive without their assistance. A 30-day supply of my medication costs $1,000. I could never afford that.
I applied for the Medicaid Waiver program but have not had any luck. Several of my friends have Waiver support, and they are doing really well. I could really use the assistance with day to day living and help with transportation. I can’t drive due to the seizures. My friends and their parents give me rides to my doctor’s appointments. I appreciate their support, but sometimes, I feel like I’m a burden.
I’m currently in what’s called the Medicaid Gap. I make too much money to receive Medicaid, but not enough to qualify for the subsidy to buy insurance through the Marketplace. I feel like I’m being penalized for having a disability. This is my life through no fault of my own, yet I can’t get health insurance. It’s not fair that our state did not expand Medicaid.
I don’t have dental insurance right now, but I am able to see a dentist. I pay out of pocket, but my dentist is a sweetheart. I get yearly x-rays and cleanings every six months.
My mom died a few years ago. The last few years have been really difficult for me. I’m currently caring for my father. My mom was the parent of a special-needs child. She taught me to use my voice to make change. When I was young, we did sit-ins at the Capital when special needs funding was being threatened. Today I tell parents -- advocate first for your child, and parent second!