Getting a Wheelchair

My experiences so far are based on four wheelchairs: a large power wheelchair (Permobile M300) (since 10/2017), a folding manual chair with a raisable footrest and headrest (used as a backup since 12/2017) and a Falcon folding power chair as my new backup (as of 3/2021) with an added headrest and footrest (not included). I donated my manual backup (which I hated) and I am now in the process of getting a Permobile M5 through insurance to replace my M300 (2/2022).

I am going from the experience of my own wheelchair needs. I am able to transfer and walk short distances (which varies greatly day to day). With my ME/CFS I need a recline and headrest to support my upper body. I don’t have the strength to hold up my torso and head for very long. The raisable footrests help with orthostatic intolerance (another thing that happens with ME/CFS). You need to find a wheelchair that works best for you, but my guidance here is based on my experiences and what I have heard from others.

a woman in a black dress with white polka dots and a red petticoat, red sunglasses, red watch and black sun hat reclining in a wheelchair.

In the House and Outside

Some of us just need the chair for outside and some of us need the chair all the time. My personal setup is to leave the wheelchair in the wheelchair van or garage and use a rolling office chair in the kitchen for cooking. I can walk some so I can get from room to room and sit in a chair or lay down in each room. This is fairly common. Don’t feel like you don’t need a wheelchair because you can get around the house! If you can’t safely walk far outside the home, you need a chair, or at least a scooter. If you are systemically weak so that your arms or body as a whole are compromised, you probably need a power chair. You should be able to cover as much ground as a healthy person walking if you have the right chair for you.

I cannot speak to using the wheelchair full time inside the house from experience, or for the experience of not being able to transfer on one’s own, but I hope if this is the case for you that some of this blog will still be useful.

I am based in San Francisco, so my experience with chairs relates to that as well.

Getting a Wheelchair

For most people, going through your doctor is the first step. Then getting a wheelchair evaluation with an occupational therapist/wheelchair specialist. They evaluate fit, how your condition relates to your wheelchair needs, ergonomics, needs, your house, etc. If you have insurance, this step might done through insurance, but keep in mind that insurance companies want to say you need the least expensive thing they can get away with. In my case, it was the in-network wheelchair supplier who sent the occupational therapist to argue on my behalf for what I need in a chair to the insurance company. For many conditions, for people who are not average size, and for manual chairs which come in more sizes this is a necessary step and even if you decide not to go through insurance it may help you understand more about what you need. All that said, a custom built chair is best if you can get one.

Working with insurance

Insurance sucks.  I have great insurance.  I have a doctor fully prepared to back me up.  Even with that, in the very best case scenario it would have taken me a minimum of three months (according to the insurance company), and more likely a year to get my wheelchair through insurance when I first needed one. I gave up and went to EBAY (more on that later). Now (3/2022) I am going through insurance to get a chair that is actually made for me and should serve me better.

Doing things in order and being prepared can save you a lot of time.

First You need a doctor’s prescription (an in-network doctor if you don’t want to pay more for your chair). Make sure it is as detailed as possible. They will fill out an insurance form, but they can also write a prescription. Every single thing you might need in a chair should be documented with the medical need. Example: Mary cannot walk, she needs a wheelchair. Her arms are not strong enough to push her in a manual chair because of ME/CFS muscle weakness, so it must be a power chair. She has degenerative disk disease, so she needs a Roho cushion. She has orthostatic hypotension, so she needs a raising leg rest. She has orthostatic intolerance and her torso muscles are too weak to support her, so she needs a full recline. Etc. Every single thing. Don’t neglect the cushion if you have back issues.

Then you need to find an in-network wheelchair provider (out of network is possible, but costs more). If there is no wheelchair company in network near you you can file for a “gap of care exception” to get an out-of-network supplier covered as in-network. I suggest calling the place you find immediately and getting their tips regarding your insurance. They know more than anyone and they should be good advocates (they want to sell the chair). Once you give the wheelchair place the insurance info and your doctor’s prescription you can move forward.

Then insurance company or the wheelchair company sends out specialists (a PT and a “lifestyle evaluator” or an occupational therapist who combines these roles) to your house to decide for you what you need (on their schedule- the first appointment available for mine was three months out).  Keep in mind that the insurance companies aren’t familiar with some conditions like ME/CFS (or don’t want to be) and might have no basis for understanding your needs and may not account for those needs. Be prepared with documentation of your condition.

Explain EVERYTHING to this person. Write a detailed list beforehand to make sure you leave nothing out. Hold no discomfort back. Tell them about your falls. Let them know what you look like on your very worst day. Don’t sugar coat anything. Leave no detail, however embarrassing unmentioned. They will listen, observe you, and take notes and measurements to figure out what the best chair for you is and how to justify it medically. Also make sure they help you find the right cushion for you chair. If insurance won’t cover the cushion the specialist suggests, find a way to get it. You can get sores and back problems without the right cushion (and even sometimes with it).

Then if you have really good insurance and they agree to do it they pay some percentage (in my case 80-90%) of the model they think you need. A lot of insurance companies will say you don’t need a wheelchair at all if you can walk short distances (10-30 feet) inside the home. Most insurance companies will only cover indoor use power chairs. This isn’t because you don’t need a chair, it’s because they don’t want to spend money. They generally only cover FDA approved chairs.

Now you have a few options- take the chair they give you, upgrade and pay the difference, or go online now that you know what you need. You can also keep arguing with them. Appeals do work, but they take months. It is a lot of back and forth. The wheelchair provider should help you. In my case I am getting a new chair through insurance and I asked the wheelchair provider if after the insurance does round one and offered to pay for some amount of the chair, if we could just promise to pay the rest so they could start building it right away. Then we can continue to argue with insurance while they are building the chair (and hopefully get more covered). They agreed.

When they insurance company buys the chair, they also cover maintenance, so that is also something to consider. Power chairs need new batteries every year, wheels need replacing, etc.

About EBAY:  I got my first Permobile M300 used with only 20 miles on it on EBAY for less than what I would have had to pay after what insurance covered and it arrived in under two weeks.  I’ve since checked back and now nearly new ones like mine are selling for half what I paid four years ago (which makes it way cheaper than a copay with great insurance).  You can also get them from dealers. They raise the prices for insurance buyers, but as soon as a model has been on the floor too long it sells for 20% of the full price.  Used ones are even cheaper. I suspect this is true for other types of chairs too. Thankfully I did not need a custom chair. The M300 was built for a larger person (300lbs plus), but after adjustments it worked fine for me for 5 years. You can get a local wheelchair repair place to adjust it for you and explain it to you.

Of course ordering online is not without its risks. If you can, stick to buying from wheelchair suppliers (which do advertise used chairs on ebay) since they have a reputation to uphold.

If you do manage to get one through insurance, they all work differently, but some will replace your chair every five-ten years. Most will replace your battery every year if it is a power chair and cover some maintenance. Call them up and figure out what you need to do, look at the deductibles and decide if it is worth it for you compared to going for a used one.

There are Abilities Expos like this one which help you find the right chair for you.

Types (big power chairs, foldable power chairs, manual chairs) Pros and Cons

Big power wheelchair Pros and Cons:

Pros:

  • If you are too weak to push yourself or your whole body is compromised in some way, they do the work for you.
  • They are very comfortable. With ME/CFS and many other conditions that might put you in a chair you become uncomfortable and exhausted more easily than most people and need full support. A chair like this will give you that. I could not stay in a less robust chair all day, but at the end of a very long day in my big chair I’m still doing pretty well.
  • They will go over rougher terrain. They will go over bumpy lawns and dirt roads and wet slopes. They will handle some snow.
  • There are many models that fully recline. You can actually lay down fully in the chair and sleep if you need to.
  • There are ones that also tilt the seat so you aren’t sliding off the chair when reclined.
  • They go pretty fast (up to a gentle run or brisk jog- way faster at top speed than the foldable ones). I feel this is a safety feature when crossing streets.
  • the footrest is solid and fully supports you.
  • some of them come with eye height” which can raise you to the same height as most people. This lets you see in crowds and museums, reach high things, and have eye-to-eye conversations.

Cons:

  • The Permobile and similar large power chairs require real wheelchair transport to get anywhere. You can’t fold it up and toss it in the trunk. If this is your main chair you will probably need a wheelchair van.
  • They fit less easily into homes and restaurants and things. Generally people will make it work, but it’s harder.
  • If it gets stuck it is 350+ pounds. I got stuck in both mud and sand in Morocco and thankfully there there are always lots of friendly people to haul me out.
  • Price. They are the most expensive. *Though you can get one used for a lot cheaper and then they can be about the same or less than a new folding power chair.

Foldable Electric Wheelchairs

Pros

  • If you are too weak to push yourself or your whole body is compromised in some way, they do the work for you.
  • You can fold it up and put it in a trunk
  • You can pack it into a case for airline travel, meaning it is not likely to get damaged.
  • You can remove the controller for airline travel and even without the case it is less delicate than a big chair.
  • Smaller. You can maneuver indoors and in tight spaces more easily.
  • While they generally don’t come with headrests or footrests, you can add these on to some models.
  • A handful of models can recline (but the seat stays in place in most models- no tilt).
  • If you get stuck you are easier to get out because they only weigh around 50-70 lbs.
  • Less expensive than large power chairs (at least new)
  • In some models like the Quicknmobile chairs you can easily swap out batteries and charge extras. You can run on one battery while charging the other, or run on two while charging a third. My foldable Falcon with the two batteries has a longer range than my large Perimobile M300 by 4-10 miles depending on who you ask. Battery range will vary chair to chair.

Cons

  • Less comfortable than a large power wheelchair.
  • The seat does not tilt with a recline in most models (the Quickie tilt models do).
  • Recline is much more limited than in a large power chair. The large chairs will go flat, these just go back a ways.
  • Less fast than a large power wheelchair.
  • Generally less able to handle rougher terrain than a large power wheelchair.
  • They tend to slide down if going across a hill (sideways instead of up or down) where a large chair will use go straight across without trouble.
  • They are not as safe in rainy, snowy or icy weather as a big power chair (specifically not designed for those conditions at all).
  • The footrests that raise up aren’t always as supportive as the footrests in a power chair. For me this means I end up using muscles I shouldn’t use and wearing myself out.

Manual

Pros

  • If you can propel yourself there is so much more you can do! There are dancers and daredevil stunt riders in wheelchairs!
  • You can get one fit exactly to you.
  • There are many models to chose from that fold up and fit in a car.
  • There are models that have a recline, footrests and headrest.
  • If this is all you need and you are able to propel yourself there is an incredible range of models that can handle various terrains and situations.

Cons

  • if your condition means you cannot propel yourself you are dependent on others. This becomes dehumanizing in ways that are hard to describe without experiencing it. With the wrong person pushing you, you become stuff. You can get left places when you are in distress. It’s awful.
  • less comfortable compared to a large power chair.
  • The recline doesn’t tilt the seat, so you can feel like you might slide off if you recline very far.
  • Most models which are built to be pushed rather than self-operated don’t handle rough terrain well.
  • The footrests that raise up aren’t as supportive as the footrests in a power chair. For me this means I end up using muscles I shouldn’t use and wearing myself out.
  • Random people will try to push you without asking! One lady solved this by making spikes for the handles of her chair which she now sells on etsy.

Fit

You can get a chair to measure or for special circumstances. This is most true for non-power chairs, but can be true for power chairs too. Here is fit advice. This is likely a conversation with your doctor and an occupational therapist/wheelchair specialist. For me the most important things were power and recline and there are limited fit options there, but the standard options were adjustable in terms of leg length (my legs are very long) so fit wasn’t an issue and I was able to get two standard chairs (one large power and one folding power for when the big one isn’t an option) that work for me.

For power chairs: if you are heavier/wider many standard chairs come with wide options or wide kits. If you are very tall, very short or have more specialized needs you may need a custom chair. I distrust what insurance thinks you need. They will always try to cut their costs regardless of your needs. …but maybe they can help you measure.

Wheelchair Vans

a white wheelchair van with stickers on it that make it look like a Star Trek Galileo shuttle

Depending on transit in your area, if you get a big power chair, you may need a wheelchair van or car. Go to a showroom to try these out with your chair and practice going in and out slowly. As a rule alway go into low speed when boarding a van or any other vehicle. Wheelchairs with a recline need to go into the upright position and it helps to tuck your controls in. The Mobilityworks I went to sent a wheelchair van to pick me up in my chair to bring me to the showroom and back.

There are power ramps and manual ramps. If you can use them, manual ramps are way easier, cheaper, and don’t hiccup and break. Power ramps can be finicky about where they extend (curb too high, etc.). They have a back up system and a manual back up to the back up, but it’s a pain. Manual ramps are very light and easy to lift if you can move to lift them or are always with someone. They will sometimes work where a power one won’t. I got a power one in my van, but I have rented a manual one and found it surprisingly easy.

Some vehicles open out the back (better for people who live in areas with driveways and mostly parking lot parking) and some open in the side (better for people who live in cities with mainly street parking). You need to get a van accessible (space on the side) spot in a parking lot if you have a side entrance.

There are used models for sale all the time which are cheaper. Insurance can (if you can make them) cover some percentage of the cost of the adaptive part of the vehicle.

Be prepared for your warranty not to be honored. The car company won’t service an altered vehicle under warranty. The place where you bought the van will have the best idea of where and how to service it, and will probably handle the servicing of the adaptive parts themselves. 

Handicapped Placard/Plate

If you get a wheelchair van you should get a handicapped plate for it. In the USA the process starts with online for your local DMV where you download a form for your doctor. You then bring or send it in depending on how your DMV works.

You can have both a handicapped plate AND a handicapped placard for when you are in a rental van or if you have a folding chair. Never forget it when you travel. Even though it is state specific, I have never been ticketed using it in another state.

You can get the equivalent of wheelchair van AAA roadside assistance.

It is called Protectionworks and will pick you up in a wheelchair accessible vehicle and know how to repair your accessible vehicle.

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