I’m in my 30’s and for the past 20 years I have lived with acquired *ataxia, caused by brain tumor surgery. I was just out of high school and attending my first semester at CCRI when surgery became necessary. After the surgery I spent one year in inpatient rehabilitation and an additional year in outpatient rehab. With the help of my family, I applied for Medicare and Medicaid during outpatient rehab. I also began classes once more at CCRI then matriculated to URI Kingston and lived on campus. I finished up my last few courses in Providence when I moved in with my brother and commuted to save money.
“Medicaid matters; it gives me the ability to live in my community and provides the assistance I need to be independent.”
While in college, a physical therapist evaluated my new home and recommended adaptations to meet my specific needs. This made getting around easier and improved my quality of life.
Medicaid benefits are critical to the long term support I need to live as independently as possible. Medicaid pays for assistance with day living (ADL) help and support that makes my everyday life possible. I have a personal care attendant (PCA) about 4 hours a day in the afternoons, seven days a week (26.25 hours total). The weekend is especially important since the assistance allows me to organize for the upcoming week. Food preparation for the upcoming week, laundry, setting up my medications and other household chores are all performed on Saturday and Sunday. I also have a service dog trained to assist me.
I take several medications to control spasms that are a result of my ataxia. Without these medications the spasms would be much more violent and debilitating. If I didn’t have Medicaid benefits, I wouldn’t be able to afford my medication.
Without Medicaid it would be really tough for me to live independently. My quality of life would be very different. All of my income would go towards paying for a PCA and medication.
Although I currently work two days a week, my biggest goal is to find a full time job.
*Ataxia describes a lack of muscle control or coordination of voluntary movements, such as walking or picking up objects. A sign of an underlying condition, ataxia can affect various movements and may create difficulties with speech, eye movement and swallowing