Adulthood is difficult for most people, even more so if you are disabled. Nobody tells you how to be an adult with Cerebral Palsy. The first milestone in my adulthood was high school graduation. Upon graduation from high school, I had no idea what the future would look like. I lost all of the support provided by my school district as well. I no longer received PT twice a week. This resulted in my spasticity increasing after graduation.
Most frustrating was the fact that I lost my paraprofessional. I had no idea how fortunate I was that my school district provided me with a paraprofessional. I worked with the same paraprofessional for a decade. Students rarely work with the same person for that long. After that, I received a new paraprofessional every year for my last three years of high school.
Once a student graduates from high school, it is up to them and their families to arrange personal care services. Some people might need nursing care, particularly if they have complex medical needs, including g-tubes, ventilators, and tracheostomies. Other people require help with everyday tasks but don’t need a nurse to provide care.
Medicaid will often pay for a certain amount of home care services. In my case, they won’t cover 24/7 care. However, they will pay for me to live in a nursing home which is much more expensive. The state of Massachusetts saves thousands of dollars every year by allowing disabled people to live at home. A semi-private room in a nursing home costs $7,756 per month on average. A private room costs on average $8,821 a month. This amounts to $93,072 and $105,852 each year, respectively.
No 22-year-old wants to live in a nursing home. People with disabilities have a right to live in their communities. I wouldn’t like living in a nursing home. I wouldn’t get to choose my meals or when I saw my friends and family. I would miss going to the grocery store, the mall, and the movie theater.
Medicaid provides me with 56.5 PCA hours a week. My PCAs help me with activities of daily living such as showering, toileting, and getting dressed. It can be challenging to find PCAs. I went through a new PCA every semester during my first three semesters at college. This was very stressful for me during the beginning of college.
It was a challenge to ensure that my academic needs were also met. Colleges aren’t obligated to provide accommodations unless a student requests them. I had to request accommodations every single semester at Westfield State University. My peers often saw my accommodations as unfair. They didn’t understand that I needed the accommodations to attend college.
Socially, disabled adulthood can be very lonely. Inclusion is important when you are a child with a disability. I played sports and went to summer camps while growing up. I attended the same classes as my peers in school. Ever since turning 18, inclusion doesn’t seem to matter much anymore. I’ve found this to be especially true when it comes to employment
Unfortunately, this is all too common. According to the Bureau of Labor Statistics, 19.1 percent of people with disabilities worked in the United States in 2021. This means that 80.9% of Americans with disabilities were unemployed last year. Much of the time, employers don’t want to hire me once they find out that I have Cerebral Palsy, if I even receive a response to an application. If societal attitudes toward people with disabilities don’t change, I’ll be unemployed forever. I’ve filled out hundreds of job applications in three years.
How is society okay with this? Does America want those with disabilities to collect Social Security for the rest of their lives? It’s challenging to live off Social Security benefits, especially with inflation. Those who receive benefits don’t live luxurious lifestyles. We often barely make it through the month.
Without my roommate’s help, I wouldn’t be able to afford rent or utilities. My Medicaid is also tied to my SSI, which means I can’t lose my benefits. I certainly don’t have thousands of dollars to go toward my medical expenses. My PCA hours alone are over $40,000 a year. My power wheelchair costs over $20,000.
Disabled adults exist. We aren’t characters in cartoons or books. It frustrates me that we are often forgotten about. We aren’t kids anymore, but we still deserve to live our lives. Disabled people of all ages deserve to be included in society!
“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
Parker, Tim. “The Median Cost of a Nursing Home.” The Balance, The Balance, 25 Oct. 2021, https://www.thebalance.com/average-cost-of-a-nursing-home-4177589.
Keep writing, Grace! The world needs to hear your perspective!