Barriers To Independence As A Young Adult With Cerebral Palsy:

I moved into my own apartment in August of 2020, a month before my 21st birthday. This is a milestone for any adult, especially those with disabilities. For a long time, I was unsure if I’d be able to move out of my parent’s house. There are many challenges associated with living an independent lifestyle when you have a disability.

The first barrier was finding a suitable apartment which isn’t easy when you use a power wheelchair and a walker. I was able to find an apartment that was suitable for me. I was able to have a ramp put in. I currently use a bath transfer system to shower, and I can move around freely. Later this year, I hope to have a roll-in shower installed in the bathroom. I am very excited about this possibility. Having an accessible shower will greatly increase my independence.

Cerebral Palsy also means that I need assistance with activities of daily living such as showering, preparing meals, and toileting. Prior to moving out, a long-time friend of mine was already working for me as my PCA. We agreed that we’d share the 2-bedroom apartment. This eliminated needing to find a PCA. Finding PCAs can be difficult, especially when you live in a rural area like I do. I really didn’t want my parents coming by every time I needed to use the bathroom or take a shower. Having my PCA live with me solved this problem.

When I moved out, my PCA hours were also increased. I currently receive 56.5 PCA hours a week. However, my PCA provides some of my care without being paid. Although I require 24/7 support, Medicaid won’t cover this in a community setting. Ironically, Medicaid would cover 24/7 care if I lived in a nursing home. Living in a nursing home would cost much more than living at home and limit my autonomy. I don’t want to be 22-years-old and forced into long-term care. I would much rather live in my community with my friends and family.

I have also been working on becoming gainfully employed since 2019. This has been much harder than I thought it would be. The COVID-19 pandemic has made this even more difficult. It’s hard for anyone to land a job during these times even more so if you are disabled. I have filled out hundreds of job applications and have interviewed less than half a dozen times. Disabilities are, unfortunately, a barrier to employment. If I didn’t have Cerebral Palsy, I would probably be working a full-time job right now. If not full-time, I would be working at least part-time.

Being independent is a milestone for many young adults. Those with disabilities should be able to live independent, productive lives. Independent living should be a choice for all disabled people. Societal barriers make independence that much harder to achieve.

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