The cost of being disabled

We all know that healthcare in America is one of the biggest scams in the world. It’s outrageously expensive and devastating to millions of people but that’s not news. We’ve been screaming about that for years. And we’ll be screaming about it for many more, I’m sure. So people know what it costs if they get sick and need a prescription, or if they have a baby. But not a lot of people know what it costs to be disabled – something that isn’t just a temporary treatment or incident, but can range from weeks to your entire life. What kind of things do you need then? What are the costs?

Since disability is such a broad topic and has such a vast range in it’s characteristics – I’ll just tell you what it costs to be me.

I was born disabled. I’ll be disabled until I die. But I also have significantly less expenses than many people because luckily, as of right now, I’m not on any medication. I also rarely go to the doctor, which isn’t necessarily a good thing. Technically, I’m supposed to have yearly visits to a heart and lung specialist, but trying to see doctors in Florida has always been a nightmare. Regardless, it’s not a massive or ongoing expense for me. That could change at any time given my disease, but for right now, I’m pretty healthy and avoid doctors. 

But muscular dystrophy ain’t cheap. Here’s just a handful of examples: 

My wheelchair

I need a power wheelchair since I don’t have the strength to propel myself. And since I have a bit of a wonky body, I need a few special modifications as well. Things like elevating leg rests and side laterals to keep my legs together. Technically, I’m supposed to get a new wheelchair every five years. But insurance doesn’t like to do that, and they’ll deny it as often as they can (they also deny repairs, too) so it’s usually closer to every 7 years. 

The price fluctuates depending on which provider I’m able to go through and what features I’m able to get. Trust me when I say that the cost is absurd – well over $20k. Imagine having to spend tens of thousands at least twice a decade just to be able to function at the most basic of levels? Without Medicaid, I could never afford to get the kind of chair I need. I mean, that’s more than most people I know spend on a car. 

Cost: $31,000 (for my new chair I got this year)

Van modifications 

Since I have a big power chair, I can’t just fold it up and throw it in the back of a car. Plus, I can’t transfer into a regular seat anyway. We had to have seats removed and the roof of the car raised so the chairs had enough clearance. We also had to have lockdowns for our chairs, of course. The bulk of the cost, though, went to getting a wheelchair lift. 

To buy a brand new, already modified van, it’s not uncommon to see prices anywhere from $55,000 to $75,000. And unfortunately, a lot of those can only accommodate one wheelchair which won’t work for my family. We bought a van and then Voc Rehab paid for the modifications when my brother was starting college, which is literally the only reason we were able to get them. Our 10+ year old van is starting to struggle. And we have no way of paying for a new van that has all the necessary modifications. 

Cost: $50,000+

Hoyer lift

Since I can’t transfer in and out of my chair, I have to use something called a hoyer lift. It’s this big, ugly, metal thing on wheels that pulls in around my chair and lifts me up in a sling that is kind of like an upright hammock. My mom then wheels it under my bed and lowers me down. Since I have Medicaid, it was covered by my insurance and I don’t know the exact cost of my specific lift. The sling is a few hundred as well. It’s not something I have to replace often, but they don’t last forever.

Cost: $400-$1000 and up (it varies depending on a lot of things)

Shower chair

One piece of equipment I have but unfortunately don’t use as often as I should or would like to is my shower chair. Because our apartment is so small, especially the bathrooms, it’s incredibly difficult to take a shower. Even with the shower chair.

But basically, it’s a plastic chair on wheels that can connect to a base that stays in the tub. Once it’s connected, the top part (the seat/back/armrests) slide onto the base on the tub and locks into place. That allows me to sit in the shower nearly eye level with my mom, who is my caregiver. After the shower, it can slide back onto the base with wheels and I can then be moved back to my bedroom so I can be transferred to my bed or wheelchair.

We got this chair many years ago so again, I don’t have a specific cost or receipt to show you. I couldn’t find the exact one I have either, but mine is a little more than just a simple chair so it’s on the pricier end of shower chairs.

Cost: $70-$400 (depending on what type you get)

Caregiver services

I’m lucky that my mom was able to get into a state program that pays her to be my caregiver each month. I’m approved for 30 hours a week – 20 of personal care – things like getting me dressed, helping me go to the bathroom, etc, 6 for companion care – which is basically just socialization, and 4 of homemaking services – cooking and cleaning.

These services, if I didn’t qualify for through my insurance, would cost over $800 a month. If I had to pay that out of pocket, I could never afford to make rent. It’s more than I sometimes make in a month. It’s also worth mentioning that I can only survive on just 30 hours a week because my caregiver is my mom who also lives with me. She provides well beyond 30 hours of care each week, 30 is just all I was able to get approved for. 

Cost: $800+ per month

These are the big expenses, but not the only ones.

I also get monthly supplies I need for bathrooming, over the counter meds. There’s also wheelchair repairs and unforeseen doctor’s visits. As a kid, I was in and out of the hospital every month, without Medicaid my family would have been financially ruined. And at 13, I had a massive spinal surgery with a week long hospital stay and follow up care for a few months. I think we all know that the cost for that was astronomical. 

Clearly, being disabled is expensive – in a way that feels like it could easily crush you. 

And it does crush people, often. There’s a reason why I only accepted part time work and am careful with how many hours I’ll work. Because Medicaid has income limits, and I can not risk my Medicaid. I wouldn’t be able to live without it – I wouldn’t have my chair or anyone to care for me, which means I wouldn’t be able to work. 

There are people facing way higher costs than mine. People who need 24 hour care and have no choice but to pay for it. Or people with ongoing treatments that are hundreds of thousands of dollars – like the new drugs for SMA. There’s also the cost for housing and transportation for those who don’t own a car. And once those bills start piling up, good luck getting out from under them.

I want to highlight the importance of voting with disabled people and health care in mind. Many disabled people are forced to live in poverty just so they can keep their healthcare and survive. Others are forced to try to fundraise money to be able to afford medicine or mobility aids.

When people talk about the extreme debt they face from healthcare, please remember that for most people, these aren’t costs they can plan for in advance. They are rarely something people can pay off with a good budget and hard work. Any one of these major expenses would have bankrupt my family without Medicaid.

Everyone deserves the ability to get the medical care and equipment they need to live and thrive. Healthcare is a human right. It shouldn’t be used as a punishment to keep the already poor and vulnerable even poorer and more vulnerable.

9 thoughts on “The cost of being disabled”

  • Thanks for writing this. It was shocking and sad to read about the price tags you have to deal with, though maybe it shouldn’t be shocking, since American health care is a scam.

    How do you feel about my sharing your post? I feel that such screams about these costs should be amplified, which was why I was thinking about sharing your post.

    • Thank you for reading! It is shocking, especially considering how many people live without insurance and how many people are at risk for losing their insurance under our current administration.

      Please feel free to share my post if you’d like! And thank you! I appreciate it.

      • You’re welcome! Yes, there are all of the people without insurance and all of the people who are at risk of losing insurance. And then there are all the cases where you do have insurance but the insurance denies you for certain things (which several family members and friends have experienced…a lot).

        Thanks for letting me share your post! I’m keeping a slower schedule around the holidays, but plan on getting into more of a rhythm after the holidays. Since part of the point is to highlight the importance of voting with disabled people in mind, I’m hoping to strategically time sharing your post at two important times of our electoral season: sometime close to Super Tuesday and sometime in October (close to the General Election).

        Happy Holidays to you!

        • Insurance denials are heartbreaking and all too familiar with my family.

          That’s a really great idea and actually inspires me to plan out some posts for election season! Thanks again, and I hope you had a wonderful holiday!

          • Yay! I’m glad that my idea helped you plan out some posts. I know Super Tuesday is in March and the general election is in November, so posts with an election theme close to those times may be beneficial.

  • My youngest son was severely disabled until his death at age 42 last year, and in his early years, we went through much of what you are going through now, with special equipment, caregivers, doctors visits, etc., so I have some understanding of the situation. BUT … I had no idea of the extent and cost of simply having your basic needs met. This has been an eye-opener for me. Thank you for sharing, and Thanks, Brendan, for bringing it to my attention. Best wishes, Karly … let’s see if we can vote someone into office who cares this year.

    • This is a terribly late reply, but thank you for reading and sharing a bit of your own story. I’m sorry about your son. It’s unfortunate that so many disabled people are forced to live through the same struggles. Best wishes to you as well, and my fingers are crossed that the election goes well!

      • Thank you, Karly! I hope you find some joy in life, despite these hard times and your added troubles. Yes, fingers crossed for sanity to return to this nation. Hugs!

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