There are a few things currently making life very hard for me and my family. These are housing, caregivers, and transportation. Ever since my accident left me in a wheelchair the idea of owning a house became just a fantasy. While I'm not in a situation where I don't have a roof over my head, my entire life at home has been confined to a single room that is maybe 15’x20’.  My things are packed wall to wall with no room left, I even had to buy a shed to put a lot of my stuff in because it wasn't safe in the basement where it floods. I'm a sucker for buying Kickstarter board games that I'll never end up playing and limited edition anime collectibles.

I've lived in this small house since 2012, an upgrade from an even smaller house where the front door opened into my bedroom. My mom bought it and we moved here with her boyfriend. After a while, he left and my elderly grandparents moved in when they started having trouble living on their own financially. Neither of them work, and my mom has been on disability because of her mental health for a few years. so we're just stuck in this little place with barely any privacy for the foreseeable future.

After my accident I found myself in the same situation that many people with disabilities needing care often find themselves in. The system places the burden of care mostly on family members. My mom ended up quitting her job in order to be my primary caregiver. I'm currently 38 years old, the same age as my mother when I became quadriplegic. Looking back I can't help but feel like taking care of me stole a large chunk of her life, that is a debt I feel like I can never repay. Starting around six years ago she's had to have a number of neck and back surgeries over the years that left her unable to continue doing most of my care. The physical things like dressing me in bed and transferring me to my wheelchair became things she couldn't do any more. At that point I did have a few other caregivers that were able to step into those roles for a while, but those always seem to be a revolving door of people that may only stay for a year or less before quitting and moving on. So my younger sister stepped in to make sure I was getting the care I needed. Spending 40 or more hours of her week taking care of me. She has 4 kids at home and I often feel like I’m stealing time time together from their lives too. In October I had an aide quit out of the blue, forcing my sister to work almost every night of the week since then. She only gets 1 night off every couple weeks if my niece has a day off from her job. She is a senior in high school, excited to go off to college and become a teacher We’ve been trying to find a replacement caregiver and getting nowhere.

The root of the problem can probably be boiled down to money.

I can get 105 hours of paid care a week, I can pick anyone I want to work for me but they actually get hired through an agency and paid through the state. Pay is only $13 an hour. So unless someone already lives close by it’s not worth it to drive more than 10 minutes or so to come to work (my sister drives 25). So I get limited to the people in my area, and those people are less than ideal. One came and trained 2 nights and then stole all the cash out of my sister’s car.

Most people just set up interviews and then ghost. The last one came and trained 3 nights. I paid her because until they are on payroll, which has sometimes taken months, I have to pay them cash. Then she was supposed to come back Monday after the weekend off and we never heard from her again

This is incredibly frustrating and disheartening. It's so much extra stress for my sister who has to take time out of her normal day to come over to my house and meet with these people that end up never showing up. I spent $700 to have a job ad sponsored on Indeed so more people could see it and it got me nowhere.

These last six months have been the first time since my accident that I haven't felt completely safe in my living/care situation. My sister can't keep doing it all long term, and being at the mercy of my other caregiver that comes to work late every morning gives me a ton of anxiety. The only reason he hasn't been fired is he’s stuck around for 10 years. We both know that I can't afford to get rid of him, so he doesn't change his behavior even when it keeps getting brought up. and then I get worn down and stressed out so I quit bringing it up.

I think being able to offer an actual living wage that reflects the amount of work and seriousness this job needs would allow me to find more reliable, and hopefully longer term help.

That leaves transportation. It isn't my most pressing concern at the moment but it might be the most realistic one that I could solve with potential profit from this coin project and/or donations. I do have a 2016 wheelchair van that I just had to spend $5000 on recently and is currently broken down again. Driving to Pittsburgh and back 3-4 days a week has put a lot of wear and tear on it. I can tell it's not gonna be long until it starts having problem after problem. A new wheelchair accessible vehicle will cost around $60,000 - $87,000.

I just hope this coin project can help me easy some or all of these issues for my family. Here’s hoping 2025 is a better year for us all!