My Journey to Independence

I’m about to have one of the biggest days of my life – moving into my own house. While it’s a huge milestone and something I have dreamed of for many years, I’m learning that living in my own home and working while employing a personal care assistant is going to be complicated, and even ridiculous, at times.

During my preparations, my service coordinator called to discuss my new support needs. She wanted to know the specific hours that I work for both of my part-time jobs. My hours are very flexible, varied, and sometimes unpredictable. That is a problem. She wanted to know my work hours so she could subtract them from my personal care hours. She then told me that according to the law that provides me help, I am not allowed to have a personal care attendant assist me during my work hours. My support needs during those hours are to be provided by my employer, and my attendant is expected to clock out after she drives me to work and not clock back in until she picks me up again, which for my one job is usually just three hours at a time.

This was a very stressful thing for me to hear. In order to work, I need someone to be able to drive me to work and back. When I asked her how I was supposed to get to work, and other work related events requiring travel, she said I would have to use my “informal supports”, meaning my backup. I don’t have experience with the Shared Ride system available in my area, but I heard lots of stories from people with disabilities in my area who say that there are lots of kinks that still need to be worked out. It’s something I will have to experiment with when I move into my new home. I am a contract employee, so I have to pay for my own expenses.

My backup is my parents. My parents don’t mind helping me, but I know they have their own busy work schedules. I feel the purpose of having personal care attendants is to allow me to manage my life independently, without always having to rely on them.

It doesn’t make sense to have personal care attendants who aren’t allowed to help you when you need help. That defeats a large part of the purpose, and severely interferes with independence.

With the help of my parents, I’m slowly working it out. There are always going to be bumps, but my parents have taught me not to give up and to get what I need to live an independent life. Out of necessity, we have learned how to fight for what I need, but not everyone does. The system needs to change. Navigating the system shouldn’t be this hard or cause so much stress, anxiety, or depression.

I am learning what my friends and colleagues with disabilities have experienced;  jobs that are very difficult to fill. When this happens, people with disabilities lose that extremely important type of support that helps us to access, and be successful, at our jobs.

I want to pave the way for other people with disabilities. I want to see young people with disabilities get competitive employment opportunities while they’re still in high school, and then have the supports to live an independent life. House Bill 400 is a crucial part of that process, as it will give the Office of Vocational Rehabilitation funding to help young people with disabilities get part-time competitive employment while still in high school, an opportunity that everyone else has. However, in order to do that, and to be successful at it, those of us who rely on personal attendant supports need to know that our supports are reliable and adequate to meet our employment needs.  More needs to be done to make the system work as it was intended.

By Alexa Brill