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Featured photo is my brother, mom and me just a few weeks after I got my new wheelchair
Getting your own wheelchair. It’s very important and can be done very wrong if you haven’t done it before. I was almost entirely on my own when it came to getting my wheelchair. I wish I knew more.
This is everything you need to know about getting your first wheelchair. There might be some details that are different for each person, so be sure to ask a lot of questions as well.
I’ll be giving you a list of questions to ask along with some information about what to do or expect when you get your wheelchair.
We’re going to go through my experience as I remember it and I’ll tell you what I did and what you should do, whether it be the same or different. This information is aimed mostly towards those in rehab.
During rehab, I didn’t know anything about wheelchairs. I could’ve asked or looked some things up, but I had different priorities and it never occurred to me to ask.
One day, as I was nearing my departure from rehab, I was given a week’s notice for my wheelchair appointment. This is where I would get my bespoke chair with anything I wanted.
It was scheduled for an hour. Much, much too short of time. As soon as you can, ask about your wheelchair appointment and have it be AT LEAST 2 hours. I went over my one hour slot and still needed more time. As a result, my chair is pretty good, but far from what I wanted and what I need.
When you’re in rehab, or at least when I was, a lot of the details are figured out for you. I have insurance, so the insurance company worked with my therapists and the rehab facility to find out what wheelchair supplier I would be working with.
A wheelchair supplier is the company that you work with when you get your wheelchairs. They are similar to a market. You go to a store (the wheelchair supplier) and you want to get something (wheels), you look at their selection and notice that it’s not infinite and only has a select number of brands.
Ask to be notified when the wheelchair supply company is selected. For me, this was a cross between who the insurance company would work with and who the rehab facility worked with.
Once you’re notified of the supply company, IMMEDIATELY ask for a catalog!
This was my biggest mistake. Not even a mistake, it took me over a year to discover that catalogs even existed. Honestly, this infuriates me even today because I could’ve been much more informed and subsequently gotten a better wheelchair.
Because this catalog is coming from your new wheelchair supplier, this will be all of what they can supply (sounds about right). You can talk to your nurses, friends, family, therapists or anyone in rehab about what they think of different parts for your chair. This is both for style and usefulness.
When it comes to deciding what things you want on your wheelchair, it gets down to what type of person you are.
For me, I’m a minimalist and do almost everything on my own. So, I didn’t get push handles or arm rests. I made sure to get a seat belt, though. I also have a carbon fiber wheelchair, so it’s lightweight, which makes doing all the crazy things a little easier.
Look at different parts and ask about their purpose and ways it could benefit you, or hold you back.
Do your research!
The one bit of advice I got from someone before my wheelchair appointment was to request that they make it slim because they typically make the chair a fair bit wider than your hip measurement.
When I went in to my wheelchair appointment, they had a few tester wheelchairs based on my measurements taken previously in rehab. In rehab, it’s kind of like a car rental, you get measured and they go to the used car lot and try to find the best fit they have for you. I think I went through 2, maybe 4, different chairs.
We spent a lot of time talking about wheelchairs because I actually knew nothing. Everything they said, I questioned. You should do the same.
I’ll include questions at the end along with a description of the questions’ purpose.
Anyway, during the wheelchair appointment, remember that these people are here to help you, but you have to help yourself first and be informed on what you want. I made the mistake of telling them “I just want the best.” That’s a lofty request, they don’t know anything about me other than the few things they learned in the first 45 minutes of talking.
In order to help yourself, you need to really think about what you’ll be doing. It’s hard to know the future, but for me, I’m extremely adventurous and I was already planning a trip to Germany just a month or so after I got out of rehab. I knew I wanted it to be lightweight, extremely durable and minimal. It will help if you’ve gone through catalogs.
When I was getting measured, I told them to make the wheelchair slim. Spoiler: they didn’t.
Something I should’ve done is gotten more involved, look at the measurements they’re taking of your body and then look at what sizes they’re writing down for the chair to be. Ask them how much space they’re adding to either side of your hips. This space can prove to be useful, if it’s a rainy day, I can fit an umbrella in between my hip and the chair. However, with this extra width, I struggle to fit through certain doors and maneuver in tight spaces. As an adventurer, I value my mobility and ability to access more places more than I value having extra space to hold things.
Really make sure that you’re getting involved in the measurements they’re taking. Ask them to show you what it might look like. If they plan on ordering a back rest at a certain height, have them take a measuring tape and show you on your body where that is.
Be intrusive. This is a one time thing. You get one chance to do it right. Once you get your chair, if you want something changed, it’s a near impossible task to get it changed (in my experience).
I was told that most insurance companies view the lifetime of a chair to be around 5 years. Meaning that, on average, my wheelchair supplier has seen insurance companies approve of people getting a new chair once every 5 years.
The same chair for 5 years. Let that resonate. Think of how much you’ve changed in the past 5 years.
This chair will be with you for 5 years, you really need to make sure you do this right. No pressure.
Over the next 5 years, you will do more, probably more than you can begin to imagine, if you did know, then you’d be psychic, and I know that you aren’t (because I’m psychic). So, even if you haven’t learned to ascend stairs or do tricks, you will and you need to be ready.
Make sure to get your chair with skills in mind, skills you have now and skills you’ll have in 5 years.
Imagine you’re a kid. You go to the store and you get to buy 1 shirt. You’ll be wearing this shirt for the next 5 years. You’ll get bigger, your style will change and you want it to survive 5 years of use. Every. Single. Day. For. 5. Years.
You want to buy a big shirt, a shirt that you can grow into, not out of.
Don’t get a wheelchair only to have it hold you back from living your life the way you want. Don’t get a wheelchair for yourself now, get a wheelchair for yourself in 5 years. On Team Cosmo, we hate being stagnant. We love trying new things, exploring and being adventurous. If you want to go do something, your wheelchair should be your last concern. When I want to go on an adventure, I don’t want my first thought to be “I probably can’t do this because my wheelchair isn’t made for this, I wish I got one that was built better.”
While I was getting my wheelchair, we had to be cunning. In the room was the representative from the wheelchair supplier, a therapist who worked at the rehab facility, and me. We all talked and laughed pretty much the whole time. We all worked together on finding me the best chair possible. It comes down to what you know or what you find out by asking. I asked a lot of questions but not enough and not all the right ones, my limited knowledge limited what wheelchair I got.
While in the room, with every part of the chair, it needed to be medically necessary. For insurance purposes, since insurance was paying, every time we talked about what I wanted for the chair, we had to think of how it would be medically necessary. This is where the cunning part comes in. In many ways, the insurance company is the enemy, maybe not so much a villain but rather extremely stingy for its own interest, so there will be many battles.
For most of the chair, medical necessity wasn’t even debatable. Things such as my body measurements that dictate the dimensions of the chair. But for things such as carbon fiber, is it truly medically necessary?
This is where we get into the area of making great arguments, something I’m particularly keen on. Make sure to work with everyone you’re with, get an attorney if you need to, and push for getting what you want, because it will ultimately make your life better.
My chair is K5. A quick lesson in lingo: wheelchairs are classified by K-numbers or K-levels. They basically define what the chair is made for. It tells you about the weight class, durability and so on. Similar to how Apple has the iMac or the iMac Pro or Macbook Air or Macbook Pro Air. Those names tell you what performance you can expect from the product.
So, while I was in the room, we were talking about what options I have and the therapist was filling out a form for the insurance company. I never saw it, but I know that it documented every part of the wheelchair that I was getting, all the specifications and the reasons that these were medically necessary. For carbon fiber, well, I have my own car that I get in and out of and I do a lot of traveling. I’ll surely injure my shoulder if my chair is made out of anything heavier than the lightest material available. I also like to test the limits, which means there is always a chance that my wheelchair could break in some way. Even if something is just cool, that right there is mental health and having more self-confidence if you’re chair was to be a certain color. For most things on a wheelchair, there is a viable reason for getting it, you just have to find out why.
Once our allotted time had passed and the appointment was nearing its end, the form was sent to the insurance company.
In my experience and I’ve been told this is the standard, the insurance company will take many months to review and approve or deny specific parts of your chair. Some employee at the company will review each part that you’re ordering and approve or deny it, on the grounds that they want to. This is where you need to hold your ground. It could end up taking a year, a miserable year, but don’t just give in. If they reject one of your proposals, fight it and make sure you get what you need and want. Everyone is on your side except the insurance company, we all want you to succeed and have the chair you want, but damn does it get expensive, and that’s why we’ve been paying for insurance our whole lives, right?
Once the insurance company confirms all the parts of your chair, the wheelchair company will order them, which could take about a month for all the parts to ship. Remember, this will probably be a hybrid chair, with different brands for a lot of the parts, so they’re coming from different places at different production rates.
Once all the parts of your grandiose chair are delivered, they only take a few hours (I was told between 2 and 4) to be pieced together.
Then, the hardest part comes, getting your wheelchair. Because this is soon after you got out of rehab, there’s a high chance you aren’t driving yet. It took me 4 or 5 months to be able to drive (it only took me a few hours to relearn, but the formalities take a long time), but that’s another post for another time.
For me, circumstances couldn’t be more against me. I was at college, I couldn’t drive, and I was taking classes. All my friends were also taking classes, most of them busy everyday. I was also about a 6 hour drive from rehab, which is where I needed to go to get my new chair. On top of that, they were only open during the weekdays (this is even worse if you’re working a full time job) between certain hours.
Because of this, it took nearly a month from when I could’ve had my wheelchair to when I actually got it. This is a problem I encourage you to talk about towards the end of your wheelchair appointment. For me, the wheelchair appointment was the first and last time I saw the representative and discussed my wheelchair until I went and got it. So, if your experience is anything like mine, you have one chance to meet in person and talk about this before it’s too late.
Discussing what will be done when the wheelchair is ready for you and figuring out where you can go. The company that supplied my wheelchair has locations (they call them branches) all around the US, it’s worth asking if you can pick up your chair in a location closer to where you’ll be. Some people travel across the country to go to certain rehab facilities, so having to go back isn’t easy, especially so early on.
In my case, I had flown home and back to college and then gone to Germany and back, all while I had my loaner wheelchair (4 flights total). Loaner wheelchair is the name for the intermediary chair you’re given when you leave rehab and before you get your own chair.
After Germany, I finally had my wheelchair appointment and then I had to find someone to drive me 6 hours to Chicago for a 1 hour meetings and then 6 hours back.
After many inquiries, I found a friend who could drive me to Chicago on a weekday. I had my car up at college with me, so we drove that, leaving later that day, finding our hotel, which was very hidden, then waking up early, going to the appointment and then leaving right after to get back for class.
We were on a very tight schedule and I put my friend through a lot.
There were many times that the restrictions set by others on the things I needed to do carried over to not only inconvenience me, but also my friends who were still gracious enough to help me regardless. It’s extremely important to have friends that are willing to help you in this way. They’re the only reason I am where I am, without them I would’ve had to wait months or even years just to get my drivers license (for using hand controls).
When I finally got back to rehab and went into the room where I got my chair, I was stunned. Almost frozen, as if my mind was so occupied with comprehending the shock that I had no room left for any motor functions. The backrest was HUGE. It was much bigger than the one on the loaner chair I had and it was way too big for me, medically and comfortably. Because I have full core and lower back control, I don’t actually need a backrest other than to keep me from sliding off the back of the chair.
A little detective Cosmo tip: when you look at someone in a wheelchair, the height of the backrest can tell you their level of injury or how much control they have. If the backrest is mid/upper back, they probably don’t have much core control and the top of the backrest is about where the injury level is. This is a rough estimate but you can make your prediction, ask the person and then see how right/wrong you were.
The chair was also much wider than I wanted. I actually had them measure the base of the new chair against the loaner chair and they were the same width. I was not happy about that. When I had gone home, in the loaner, I wasn’t able to get through many of the doors in my own house, the chair was too wide for me and for the doors.
I do like the chair that I have and I’m grateful for it, but this is an account of my experience when I first got my chair, and because I’m honest, I’m telling you how I felt and the problems I had so you can avoid them.
It also looked pretty sleek. But I have to admit, the imperfections casted a shadow on my excitement. There weren’t many, but they were the type that made all the important difference.
My biggest mistake, and I urge you not to fall prey to this all too common psychological bias, was that I accepted my chair anyway.
I regret few things, most of them involve me not speaking up. I was caught up in the moment, tired from being in the car all day and, on some level, probably just wanted to get out of there because I had already put my friend through enough. I remember signing some papers confirming that I’m taking the chair. I don’t remember what they were exactly, but I think it’s safe to assume they were saying that I agree to take the chair as it is and confirm my approval.
Do not do that unless the chair is exactly how you want it. I should’ve told them that I wouldn’t take the chair until the changes were made. I didn’t. And now, as I’m writing this over a year later, I still have these imperfections on my chair. Of course, I’m still alive and I’ve made it this far, so it can’t be all that bad, right? Sure, but it’s possible that it could’ve been even better. I also could’ve taken the time to get these issues fixed, but I didn’t because of my values.
Stay firm on what you want and if it doesn’t meet the standards of what you want/need, don’t settle. Team Cosmo doesn’t settle. I’ve experienced it, it’s not fun and now I’m here to tell you, so you can avoid making these mistakes.
Well, that’s my story and now, as promised, here are the questions to ask at each stage.
When you talk to therapists from start to finish
- In the beginning, ask them to teach you about every part of your wheelchair. What the parts are called and what purpose they have.
- Ask about some common upkeep that you’ll need to do.
- Ask to be shown how to address common or even uncommon problems. Ask if you can take a video for personal use or take notes.
- Ask if they have any other types of wheelchairs or parts that you can look at.
- Ask how soon they can set up a wheelchair appointment. Having one where you just talk and learn/ask questions is valuable and will make the second appointment (the one where you actually order the chair) go faster.
When you find out who your supplier will be
- Ask for a catalog from the company for all their wheelchairs and parts (that apply to you). This might be a huge catalog, it might be digital.
- Ask if there are any other wheelchair suppliers that you could work with and why this one was chosen. It’s good practice to question everything so that you can have the opportunity to make a better decision
When you find out when your appointment will be
- Ask for the appointment to be at least 2 hours. If they can’t do that, ask for 2 appointments, and have the first one sooner.
- Ask about what the general procedure will be, so that you can be prepared to talk about what parts you want.
During your appointment
- Ask the wheelchair supplier a lot of questions about their service, such as:
- Do you have any branches near me?
- What times are you open? (make note that if you plan on having a job, their open hours are important)
- What is the procedure if the insurance company rejects one of my parts? (and how to fight back and not give in)
- What is the procedure for getting my chair after the insurance approves it? Where will I pick it up? What times can I pick it up? (think about how this might affect you if you have to travel the country to get your chair on a Wednesday morning)
- (if you don’t know what to get) Based on the things I plan on doing, what have you seen similar people do/get?
- (when they take measurements for the dimensions of the chair and the parts) Can you show me what this might look like on me? (they could outline a square to show you the size of your seat)
- Which products have the best warranty?
- Which products are known to not work or be the best? (this is important, the brakes that I have on my chair are known to be terrible)
- Which products are known to be the most durable and or require the least amount of upkeep?
- Ask if there is a place to see reviews for some products.
- (after choosing all the parts for your chair) How familiar are you with these products/brands? Do you know if there might be any better options that require less upkeep or are more durable?
After your appointment
- Keep in contact with the supplier and ask for updates on the approval process and once the items ship, ask to be notified when all the parts have arrived.
- As soon as the insurance approves the parts, the time they arrive after being ordered is unknown, still, ask to talk about setting up a time to get your chair.
- Talk about where you can pick up your new chair, make sure that it is at a branch location close to you and at a time that works for you.
- I recommend buying some fast bearing for your front wheels, the bearings that come with the chair are cheap and slow. Have a look at these bearings and bring them with you when you pick up your chair.
When you get your wheelchair
Once you arrive, look over the chair and make sure it meets your standards and expectations. If anything is wrong with it, immediately tell them and ask what can be done to make the changes.
- If all the parts are good, ask about how it was built and what tools were used, i.e. what tools you should have to do maintenance.
- Ask about how to fix certain issues, such as if the front wheels become loose and start to wobble when you go a little fast.
- Ask about how to change the wheels in the front and how the chair comes apart.
- Ask how to fix any of the parts if they break and keep the chair from disassembling properly.
- Ask about the procedure if the chair breaks in a major way and needs to be professionally fixed.
- Ask about the procedure for getting new parts if one of them breaks prematurely.
- Ask about possible modifications that can be added to the chair.
- Ask them to measure the chair when it’s assembled and weigh it when all the parts are on it. Take note of this, it’ll be important for travelling.
- Look at the bars on the wheels that you use to push, if they’re too far out, ask them to be moved in to make the chair a little slimmer.
- If you remembered to bring your bearings with you, ask to have them put in.
- Ask for the warranty information for the different companies that correspond to each part. That way, if a part breaks, you’ll know which company to call to claim a warranty on it.
I really hope all of this helps. It’s a lot of information, but this is one of those times that you get once chance to do it right.
This is how my brakes were just a few weeks after getting the chair.
Immediate action item: Write these questions down in your notebook and start asking right away!
Summary:My experience when I got my first wheelchair was less than perfect. Luckily, I learned a lot from it and now you don’t have to make the same mistakes I did. Basically, you have to ask a lot of questions. The right questions. And take a lot of notes!
Overdeliver: One thing you might not think of is the backrest. When it comes to the backrest, you need to really consider what you’re getting. Think of the material, if it’ll be breathable during the hot summers or not (mines not). Think about whether or not it has lumbar support to help you avoid back problems. Another big part is the height. How high up do you really need the backrest to go? I recommend challenging yourself to get it just a little lower than you need so you build up some strength. Another important thing to consider is whether or not the backrest goes to the bottom of the chair. You absolutely want the bottom of the backrest to go down to your seat. If there is a gap, you might be showing the world more than you want to, and in the winter, cold winds will get to you. Make sure to get your backrest so that it only goes up as high as you want and it goes down all the way.