Disability Pride Month: My Caregiving Situation

July is Disability Pride Month, so every week this month I’m going to share a post about something disability related – whether it’s personal to me and my life, or something more general and societal.

I think I’ve share a little bit about my care needs before, but I don’t think I’ve ever written a full post about it exclusively. It’s on the top of my mind right now because my PCA (personal care attendant) was out on vacation last week, so my life was a little more chaotic than usual. I typically use the term PCA when I’m referring to someone who is paid to help me with my needs. Some people might use the word caregiver, some people might use the word aide – there are lots of different terms that get used, but they all mean roughly the same thing. Just wanted to get the language out of the way upfront! Personally, I have a mix of PCAs (well, right now, I have one PCA – more on that in a bit) and unpaid caregivers… aka my parents.

When I was younger – actually, all the way up through high school – my parents were my only caregivers. Honestly, I don’t think we realized that having PCAs was even an option for us – no one ever brought it up as a real suggestion, and things worked well enough, so we kept going. But when I graduated high school and decided I was going to live on campus at college, we had to figure things out, and quickly. Obviously, my parents weren’t going to come live with me at college, so we had to figure out how PCAs worked – would insurance pay for them (yes, begrudgingly) and how to actually hire them. I’ve mentioned this is posts before, but figuring out how to “train” a PCA to understand your preferences and needs while also figuring out how to live on your own at college for the first time is not something I’d recommend. It was super stressful and very very anxiety inducing, and I shed many tears. For the rest of college, it mostly worked out – I had a rotating roster of PCAs to fill the hours that I was scheduled for, though there were sometimes last minute call offs where I ended up either going home or having my mom spend the night in my dorm room with me. Definitely not ideal, but better than the alternative of not having anyone to help me get into bed or use the bathroom.

Flash forward to now, and things look a little different. Finding PCAs is hard. Currently, someone who wants to be a PCA can actually make more money working at Target! My PCAs are paid for by state-funded Medicaid insurance (I could never afford them otherwise), so I don’t set the rates of pay, the state does. But when you place the value on this truly life-giving work so low, it becomes really, really hard to find people who want to be PCAs, and who want to be PCAs for more than a few weeks or months. The pandemic certainly did not make things easier – I still have to be incredibly careful about how I interact with, and PCAs are with me for hours at a time. If I hire someone who is working for multiple people (like many PCAs are!) I’m really increasing my exposure risk, and I can’t afford to do that. So right now, I have one trusted PCA who comes four days a week. If she is on vacation, or sick, there is no paid backup.

Which means that the rest of my caregiving needs are met by my parents – my unpaid caregivers. And in many ways, it’s great – I am so lucky to be able to live with my parents, to have them be willing to help me. And we are very, very close because of it – there are certainly also some stressful times because of it, but those times aren’t the majority. I can be really nice to know that I have built in back up, or schedule flexibility if I want to do something (relatively!) spontaneous. But it’s limiting, too. It means living at home, and losing some of the independence that I’d really like as an almost 35 year old. Plus, my parents will not physically be able to help me forever!

I don’t think that I – or any disabled person – should be forced to live in a group home / congregate care just because PCAs aren’t valued and paid enough to care for people in their own homes. It’s something I spend a lot of time thinking and worrying about – it’s constantly in the back of my mind. Because right now, the lack of PCAs is at a crisis level I’ve never seen before, and I don’t think it’s something that most people are aware of. I am grateful – so, so grateful – to have my parents available as backup, but it shouldn’t have to be the case. We need serious change in the way PCAs are valued in this country, and it needs to happen soon.

Leave a Reply