Living with Cerebral Palsy has taught me that no matter how much you plan, reality can end up looking very different. When I was growing up, I knew that after high school, I wanted to go to college. I was unaware of how different the accommodations process would be when I went to college. Difficulties with the office of disability services coupled with the COVID-19 pandemic led to me dropping out of college.
I had always wanted to work for a living. I imagined I might pursue a career in medicine when I was younger. I had no idea how difficult it is for disabled people to find jobs. According to the Bureau of Labor Statistics, 19.1% of those with disabilities worked in the United States in 2021. This is a slight increase from 17.9% in 2020. I was shocked that so few disabled people work in America. Discrimination because of a disability is supposed to be illegal. However, discrimination does occur. Often, when employers find out I have CP, they no longer offer me an interview.
One of the reasons many disabled people are unemployed may go unnoticed. Some people with disabilities rely on government programs like Medicaid to live their lives. People cannot function without getting dressed, eating, or showering. Medicaid allows many of us to live at home rather than in a nursing home. Some of these programs restrict the amount of money you can make and the number of assets you can have. Disabled people are effectively forced to live in poverty to survive. Medicaid coverage should not be based on a person’s financial situation.
I receive Medicaid through the Social Security Administration, which means I have to remain disabled by their standards to keep Medicaid. Without it, I wouldn’t be able to shower, leave the house or use the bathroom. This would make it impossible for me to even go to work. I should be able to keep Medicaid and have a career.
I knew that dealing with insurance companies was a regular part of life with a disability. However, when I became an adult, this was suddenly much harder. It started with having to fight for more PCA hours so that I could go to college. I eventually secured over 40 hours of personal care a week.
The next hurdle was finding qualified PCAs. This was harder than you might think. I went through three different people in three semesters. Sometimes, my mother and a friend had to fill in if they didn’t show up.
Insurance companies often don’t want to cover equipment, supplies, and services even when somebody needs them. I received a new power wheelchair last year. I had to appeal my insurance company’s decision twice. Even after agreeing to cover the power chair, insurance didn’t cover the seat elevator because they believed it wasn’t medically necessary.
Disabled people need to be prepared to prove themselves. It can be tiring, but it is worth it. Having a solid support system is also essential for disabled people. Those with disablities are human beings who are worthy of living full lives.
Sources:
Persons with a Disability: Labor Force Characteristics Summary – 2021.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 24 Feb. 2022, https://www.bls.gov/news.release/disabl.nr0.htm.