Independence is important to me as someone living with Cerebral Palsy. As I’ve grown up, I’ve become more and more independent. Moving out in 2020 was a milestone for me. I was ready for more independence as a 20-year-old. I didn’t want to end up living in a nursing home. It wasn’t my idea of freedom. In fact, a nursing home would significantly limit my independence. No 22-year-old wants to live in a nursing home. Having a disability shouldn’t mean that someone must live in a facility. I rely on various resources to live independently.
I am fortunate to have a live-in PCA who helps me with my activities of daily living, such as showering, dressing, and toileting. Having someone available 24/7 is crucial for me to live independently. If I need to go to the bathroom in the middle of the night, he is there. I don’t have to worry about having incontinence episodes because I can’t make it to the toilet. If I wake up not feeling well, I am able to have his support as well.
Medicaid doesn’t pay for around-the-clock care in the home. Ironically, they will pay for someone to live in a nursing home. This is not what independent living is. I wouldn’t have the ability to choose my bedtime or what I wanted for lunch in a nursing home. I like having the freedom to choose what I want to eat, and when I go to bed.
Unfortunately, it can be challenging to find PCAs. It’s not uncommon to have PCAs who are unreliable either. I had a PCA in the past who was late nearly every day. When you depend on someone, you hope they are reliable. Thankfully, having my PCA live with me has solved this problem.
Technology also allows me to be more independent. I use technology to keep in touch with my friends, family, and doctors. Telehealth enables me to attend doctor’s appointments from my home. I don’t have to rely on my PCA to drive me to doctor’s appointments if they are virtual. I also use technology to order groceries and other supplies. I can order my favorite juice off of Amazon whenever I run out. Two years ago, I also discovered grocery pickup. I can get groceries while I am conserving my energy.
I can also use my iPad to read books, write blog posts, pay bills, and send e-mails. I use a software called Bookshare to access thousands of e-books. I use Bookshare regularly for reading books and also for reading magazines and newspapers. Bookshare was useful for me in an academic setting as well. I was able to read the same material as my peers.
Accessible housing is also key to living independently with a disability. Unfortunately, accessible housing can be difficult to find. I am not the only disabled person who has struggled with this. In February of 2020, Apartment List conducted a study using data from the American Community Survey and the American Housing Survey. The study found that only 9% of households with a disabled member live in an accessible home. Only 6% of homes in the United States are accessible, even though more than 15% of households include a physically disabled member.
My apartment isn’t 100% accessible, but with ingenuity and equipment, it works for now. I can move around freely, and my apartment doesn’t have stairs. In the summer, I’m hoping to have a roll-in shower installed in the bathroom. This will significantly increase my independence.
I am glad that I can live independently. It makes me very proud. All disabled people deserve to live in their communities independently. Independence doesn’t necessarily mean that you do everything by yourself. To me, independence means having control over your everyday life and how you live.
Warnock, Rob. “How Accessible Is the Housing Market?” Apartment List , Apartment List, 19 February, 2020, http://www.apartmentlist.com/research/how-accessible-is-the-housing-market.