Guide To Top Rated Manual Wheelchairs in the Market

“That’s a really nice chair,” said the vendor rep, when I rolled into my local seating clinic almost three years ago. “We can’t get you anything like that.”

Nice to meet you too, I thought.

I knew the chair I was pushing — a TiLite TR with an ADI backrest, bolt on sideguards and a jerry-rigged cushion — was nicer than what a lot of people had, but it sure didn’t feel extravagant. The frame itself was of unknown age. I first got it in 2008 when a rugby teammate, Mark Zupan, tired of watching me push around a 2-inches-too-wide chair with a duct-taped backrest and offered me his old frame. The fit wasn’t perfect — it was a little too short, with too little dump — but it was better than what I had, so I adjusted where I could and otherwise made it work.

In 2013, a small wheelchair manufacturer built me a custom chair. That chair fit better than any I ever sat in, but the frame was aluminum and rattled me to pieces on anything but the smoothest of surfaces. Plus, they made it out of thin-walled material to save weight for a handcycle tour. After two years, the frame started deteriorating and I was forced to switch back to the TR. Having experienced a well-fitting chair, I now knew what I was missing; having experienced aluminum, I wasn’t going to get a new frame unless it was made out of titanium.

Fortunately, I got married, and in 2017 I went onto my wife’s work insurance after a decade on Medicare/Medicaid. Finally, I thought, I can get a new chair. I made an appointment with the seating clinic, only to have the rep shoot my dreams down before I’d even had the chance to open my mouth. I went in there knowing exactly what would work best for me: a custom-fit TiLite TR. I rolled out having ordered a new cushion — the therapist’s multi-thousand-dollar, insurance-approved method to keep me making do with the chair I already had. I was pissed — even more so when my left foot started swelling, my spasms worsened, and my low back and neck pain increased.

So began a three-year quest to obtain the right chair for me. On a personal level, the quest proved successful. I sit here today in a chair that is lightweight, durable and well-fitted to me and my lifestyle. It is, without a doubt, the best chair I have ever pushed. But that doesn’t mean this story has a happy ending. How I got the wheelchair and who ultimately paid for it reveal a system that is more broken than you could ever imagine.

Selecting a New Manual Wheelchair? There’s an App for That.

When it comes to selecting a manual wheelchair, one size does not fit all. My Wheelchair Guide mobile app makes choosing the right wheelchair easier by guiding you through your self-assessment and maintenance checklists, and it also includes customizable to-do lists and helpful wheelchair skills videos.

The app was created by United Spinal and University of Pittsburgh, with the help of a grant from the National Institute on Disability Independent Living and Rehabilitation Research. Look for Manual Wheelchair app 2.0 to come out this year, and power wheelchair information will be released soon as well. If you would like to assist with accessibility and usability testing, please do not hesitate to contact the advocacy team at advocacy@unitedspinal.org.

Search ‘MWG Manual’ in Google Play or Apple’s App store to download and learn more at unitedspinal.org/my-wheelchair-guide/

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The Problem

I first met Dave Knight at a brew pub in Eastern Washington. My editor, Ian Ruder, and I were there to visit the TiLite factory the following day and Knight was showing us around. After an unobjectionable beer, we got to talking about wheelchairs. I told Knight the story of my indeterminably old chair, and how, roughly two years after the beginning of my wheelchair quest, I had gotten nowhere. I’d started working full-time, gone onto my own private insurance and tried everything with them. Could I use an outside vendor? Sorry, no. Could I buy the wheelchair and equipment I needed out-of-pocket and have them reimburse me? Sorry, no, we don’t do that. I was told that my plan had an exclusive contract with the same vendor who’d already shot me down.

Every chair starts out as long pieces of tubing that have to be cut, bent and welded into form. Titanium generally takes more skill and time to work with than aluminum.

Knight is an assistive technology professional with 26 years of experience in the mobility industry, and he’s worked for Permobil since 2011. He lives the same problem on the other side of the equation — increasingly getting stonewalled by vendors and insurance companies when he recommends anything more than a base model chair and components for his clients. When I asked him what it would take to get my insurance to pay for the wheelchair I needed, it touched a nerve. Over his career, he says, “I’ve seen technology get better, and at the same time funding keeps getting worse.”

He’s right that it hasn’t always been this bad. Back in the ’80s and ’90s, there was an innovation explosion in the U.S. wheelchair industry. This was driven partly by better technologies — many of which were adapted from the bicycle and aerospace industries — and also by the recent emancipation of wheelchair users to live more freely in their communities. But there was a financial aspect to it as well. Companies could make money from innovative designs and small wheelchair startups were being bought up, sometimes for significant sums, by major wheelchair manufacturers. Back then, reimbursement from insurance providers wasn’t based on a set fee for a certain category of chair — it was based on what that chair cost. “Both Medicare and private insurances would pay for the chair you needed as long as you could show it was medically necessary,” says Bob Vogel, a T7 para who has worked in and around the wheelchair industry, both on the manufacturer and the vendor side, since the early ’80s.

But in the 2000s, Medicare significantly tightened up wheelchair reimbursement. Part of it came alongside system-wide cost cutting measures, and another part was due to a couple of high-profile scandals in the industry (damn you, Scooter Store!). For manual wheelchairs, one of the biggest changes was the elimination of a billing code that applied to most chairs more advanced and expensive than a basic, lightweight wheelchair. Codes are the basic unit by which insurance providers categorize which different products and services are reimbursable.

At the time, TiLite, Quickie and Top End all offered titanium frames because there was consumer demand and because insurances would pay more for a chair made out of titanium. When Medicare eliminated the code that applied to titanium, it lumped all the chairs that were previously in that code into a different one that had a lower reimbursement amount. Not to worry, Medicare said, vendors could still add on upgrades — they just need to bill for those separately. It was annoying for vendors because they had to change how they did things, but they still got reimbursed more for better equipment.

A box-style frame with fixed back posts is both lightweight and durable, but the only adjustability is in the center of gravity.

But around five years ago, the Centers for Medicare and Medicaid Services issued a memo stating that way back in 1993, when they originally created all of these codes, they’d already taken titanium into consideration. So providers were no longer allowed to bill for the additional expense. “It wasn’t just Medicare saying, ‘We aren’t going to pay for this,’ it was them saying, ‘We did pay for this’ without paying any extra,” says Knight.

By the time I started my new wheelchair odyssey, most private health insurers in the U.S. had already followed Medicare’s lead in regard to reimbursement amounts for wheelchairs. Advanced frame materials, custom modifications and upgraded components were becoming rare. The exceptions these days are people who get a wheelchair through workers’ comp, or, sometimes, those who have insurance through a union (collective bargaining is a thing) or through a Fortune-500 level corporation with a contract big enough to push back. I didn’t have any of those. I needed help.

Sharing Info on Letters of Medical Necessity

Have you and your clinician successfully submitted a letter of medical necessity to receive the features and requirements you needed for your wheelchair? United Spinal is collecting stories like yours so we can build a library of language and guidance to help wheelchair users get what they need.

The ‘Letter of Medical Necessity’ is a letter written after your wheelchair assessment to the insurance company paying for your wheelchair that justifies your need for the specific chair requested. The letter is supposed to be very descriptive about what equipment is recommended for you and why. 

We will post a library of language and guidance that will help wheelchair users know what to highlights. Please email us your story and title your email “Letters of Medical Necessity” to advocacy@unitedspinal.org.

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The Plan

Fortunately, I had Dave Knight fired up. And he already had the start of a plan. The idea was to figure out everything I needed, not compromise on quality or what we thought insurance would approve, and then have my vendor bill each individual piece separately. If we could force them to deny specific pieces, then we could put the full court press on the health insurance appeals process. With the right team willing to put effort into a lengthy battle, maybe we could get my insurance to pay up. If it worked, for the first time in my wheelchair-using life, I would have a chair perfectly setup for me — and Knight and my vendor would have precedent for the next time someone needed similar equipment.

First step was getting me measured. The next day, after Ruder and I had toured the TiLite factory, we went with Knight and another longtime ATP into a conference room. On the wall were a row of old, framed marketing photos, one of which showed Mark Zupan mean-mugging the camera in a frame that was decidedly newer than the one he’d given me. With Zupan looking down, we started the process, going over every measurement and every component with an eye to how each would affect my day-to-day life.

Caster position was just one example. I currently live in an old house with a teeny, tiny bathroom. To be able to maneuver, I need a frame that is as short possible. But a short frame makes it easier for the chair to tip forward. Multiple times a day I bend over my lap to play with my son on the floor and I’m building a house in the country, where I spend a lot of time wheeling in the dirt. With a chair that’s too tippy, I’m likely to wind up sprawled on the ground a lot more than I’d like. One solution is to bring the casters forward, closer to front of the frame, instead of sitting a few inches back like they normally do. This lengthens the wheelbase and reduces forward tippiness without making the chair any longer.

There are dozens of these types of little tweaks that can maximize a chair’s safety and performance, and they all vary based on a person’s body, injury-level and lifestyle [see Gear Hacks: Getting a Good Setup with Bad Reimbursement]. But the manufacturer has to be willing and able to make these modifications — some (though not all) of which require additional time, skill and money.

The less a person knows about chair setup, the more vital it is to find a quality team that can help guide them through the process. I had a lot of experience and came into this with a solid understanding of what I did and didn’t want, and I still found it incredibly valuable to collaborate with two knowledgeable ATPs. For that hour we spent dialing in my perfect setup, I felt like I was in wheelchair Shangri-La — choosing equipment based entirely on my body and my lifestyle instead of how much it cost.

But we weren’t in Shangri-La, we were in Pasco, Washington, and this fabulous, theoretical chair we’d configured was going to cost a lot of money. We still had to find someone to pay for it.

McBride peruses the goods at the TiLite factory in Pasco, Washington.

 

The Squeeze

The next step was getting a therapist involved. I’d ditched the seating clinic after my previous experience, and on a friend’s recommendation, had found a new PT. I met with my new therapist, and then all together with Knight and the vendor rep. We made a few minor changes based on the therapist’s recommendation, and overall, the process was a breath of fresh air. I felt empowered rather than dictated to. It helped that the vendor was already on board as well, knowing the plan to shoot for everything I needed, and be prepared for a long appeals fight with my insurance company.

The appeals process is another reason that it’s so valuable to find a therapist who is both knowledgeable about spinal cord injury and passionate about getting you the equipment you need. Insurance appeals are designed to make things tedious and opaque, to take forever and grind you down until you just accept what they’re offering. A therapist is usually the grunt worker through the process because they have the knowledge to argue about “medical necessity.” To be an effective advocate, they have to have an in-depth knowledge of both SCI and your individual situation, as well as the willingness to engage in a protracted battle.

A month or two after the appointment, my insurance did approve the base items — aluminum frame with no custom modifications, aluminum ROHO backrest and a ROHO quattro cushion, plus a seat belt that I didn’t even ask for. But they denied everything else, from the expected (like the titanium frame charge) to the WTF (like my casters and basic metal pushrims). The letter gave boilerplate insurance denial speak:

“Your benefit plan covers the basic items needed for your mobility needs. The request for some of the items do not meet your health plan criteria because they are considered beyond the basic need or are not mobility related.”

How pushrims and casters could be considered “beyond the basic need” or not “mobility related” was beyond me. I mean, I suppose I could get around pushing only on my tires, but going without casters was going to require some damn impressive wheelie skills. The letter gave no indication of how to appeal, instead offering a peer-to-peer support number that my “physician or health care professional” could call to discuss the decision.

When my PT called, they told her that it had to be a medical doctor making the call. This took some wrangling, as my doctor had written me a wheelchair prescription months before but hadn’t at all been involved in the specifics. So my PT had to fax the letter of medical necessity to my doctor and then go over all the details. My doctor let insurance know that her being forced to call was ridiculous, as the PT was the expert here. Insurance was unmoved. They wouldn’t even discuss medical reasons for why items had been denied, instead telling her that really the problem was with the vendor submitting an unbundled claim.

To understand bundling, we have to go back to Medicare, which first started the policy. The stated intent of bundling was to protect consumers, to make sure that DME vendors couldn’t give you a wheelchair frame and then say, “Sorry, Medicare didn’t pay for wheels, you’ll have to buy those separately.” Bundling meant that Medicare gave a provider a set amount, and for that money they had to give you everything associated with the chair: frame, wheels, pushrims, wheel locks, etc.

Today, most private insurers also follow Medicare’s bundling policy. This is why my insurance was denying casters and pushrims, because they said that reimbursement for those, along with everything else we’d submitted for, was already included in the base wheelchair code they’d approved.

The problem with bundling is that in the all-consuming quest to reduce costs, insurance companies base reimbursement amounts for bundles on the most basic items they contain. So the more complex and expensive the options a vendor submits for, under a bundled system, the bigger the loss they take if they provide you with those items. It’s like Medicare’s memo stating that they’d already paid for titanium without paying any extra, only at a system-wide level.

“If you’re going to set pricing on groups of products, you have to do it in a way that’s rational,” says Don Clayback, the executive director for the National Coalition for Assistive and Rehab Technology, which represents both complex rehab technology manufacturers and suppliers. Clayback says that an insurance company gives vendors a set price. The vendor might be willing to take a $20 loss on a specific item because they can recoup the cost elsewhere, but when the difference is hundreds of dollars or more, they start to say, “I can’t do it.” In this case, it’s hard to fault them — they are businesses after all. Try going into Best Buy and asking them to give you an 80-inch TV for $50 and see what happens.

Now, you could blame manufacturers, but manufacturers have already been squeezed in this system as well. Margins are slim and keep getting slimmer. TiLite is owned by Permobil, a Swedish company that is owned by a big Scandinavian investment company. Quickie is owned by Sunrise Medical, a German company that is owned by a different Nordic investment company. Invacare, based in Ohio, is a multi-billion-dollar, publicly-traded company owned primarily by private equity firms. Wheelchair manufacturers are part of enormous, global corporations because if you’re going to do business with the U.S. health insurance industry, the economics of scale are the only economics that work. Manufacturers know exactly how much an insurance company will reimburse for a chair, which leads to a world, as Vogel puts it, “where instead of designing a wheelchair to maximize ability, sadly you’re designing it to fit into a funding category.”

About That Bill

If you ever look at the bill from your CRT vendor, you’ve probably asked yourself, why is this wheelchair, cushion or backrest listed at more or less double its MSRP? Like everything in the industry, it’s complicated, but the short story is that nobody actually pays the price that’s listed.

As one source told me, you can think of it as a game between the vendors and health insurance providers: Health insurance companies are always looking to reduce costs. Vendors are afraid that if they list the price of a piece of equipment too close to the existing reimbursement amount, insurance companies will have justification to further reduce payments. That’s how I wound up with a manual wheelchair and components with a list price of $19,000.

I’m sure there’s some sort of formula that went into that price, but essentially it’s just a made up number. What really matters is the number that’s listed as “Insurance allowable.” That’s what insurance pays your vendor and is what your copay amount should be based on. As with anything though, it’s worth double checking before you sign that bill.

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The Kicker

As we tried to figure out how to appeal the insurance company’s decision, they threw another wrench in my spokes — sending me a letter stating that starting in a few months, they would no longer cover me as my primary insurer because I was eligible for Medicare Part B. I was shocked. I had gone off Medicare because I was working and would have to pay out of pocket to retain it. I didn’t currently have Medicare Part B, but because I was disabled enough to qualify for it, insurance was refusing to be my primary coverage. Seriously?

However legally dubious this policy was, I didn’t have time to fight it before I got kicked off coverage. My employer, United Spinal Association, agreed to cover my Medicare premiums while we figured out what to do, but once July 1 came, I would be back on Medicare, and there was no way Medicare was going to pay for the wheelchair we’d submitted for. It was already the beginning of May and we couldn’t appeal my current insurance company in time to still get a chair. I threw in the towel and asked the vendor to get me an out-of-pocket price for all the upgrades.

A few days later, I got an email from the vendor, telling me that “due to contractual obligations” they have with my insurance company, they had to get upper management involved. A few days after that, I got a call from the vendor’s vice president, who apprised me of the situation: a few years ago, they signed a contract with my insurance company agreeing to the bundled pricing. My insurance company claims that this pricing pays for everything a user needs, so they are not allowed to charge me private pay for any upgrades. Even though there was a multi-thousand-dollar difference between what my wheelchair cost and what insurance would be paying, they would provide me with the chair.

Wait. What? I was really getting the chair? Yes, it was true.

Three years after starting the process and 15 years since I’d last had insurance pay for a wheelchair, I was finally getting a chair configured to maximize my function and maximize my daily life. The messed-up thing was that I felt dirty about it. Sure, it was great for me. But would any of this have happened if I wasn’t a writer for a national magazine for wheelchair users — someone who had both connections and a platform? In fact, I already knew what happened when a member of the general public goes into a seating clinic and asks for the good stuff: The vendor says, “Sorry, your insurance won’t pay for that.”

But as I’ve talked to people in the industry, I’ve learned that while “your insurance won’t pay for that” is often true, it can also be misleading. Many of the major CRT vendors across the country have been forced to sign something of a devil’s bargain. Insurance companies claim they’re paying for everything you need, and major CRT vendors have signed contracts saying as much.

Find a PT and an ATP who are willing to fight for what you need. Don’t let the vendor dictate the process. ATPs have to sign a code of ethics that puts your welfare, not the vendor’s, paramount. If a vendor tells you your insurance won’t pay for something, make them prove it. Tell them to bill your insurance for what you need and see what happens. Cushions and backrests can be billed separately and are subject to different rules, but frame materials and modifications, wheels, pushrims and casters are typically all included in a bundle. As a vendor source, picking his words very carefully, told me: “If [a therapist] wants particular products, we have to meet those products.”

Aluminum wheelchairs account for the vast majority of complex wheelchairs sold in the U.S. Titanium frames like the one McBride is sitting in are increasingly rare.

 The Right Chair

On June 30, a single day before my insurance deadline, I finally got my wheelchair. The moment I first transferred into it was surprisingly anti-climactic. After the mythical proportions this quest had taken on, I would have expected a revelation. Instead, it felt like, well … a wheelchair. It didn’t even feel perfect. That would come later — after I fine-tuned the pressure distribution in my cushion, tweaked and retweaked the backrest height and angle, and tried, unsuccessfully, to raise my front seat height after falling face first into a pile of Transformers. After so many years of making do, it felt a little weird, but I called Knight for help.

Vendor Consolidation

It’s hard to miss: there are a lot fewer complex rehab technology vendors than there used to be. Similar to the reasons why wheelchair manufacturers are part of behemoth corporations, consolidation of vendors can be traced back to shrinking profit margins. As CMS and private insurers have reduced reimbursement amounts, smaller vendors have had a hard time staying afloat. Many have either gone bankrupt or been bought up by bigger vendors. As this has gone one, we’re now at the stage where wheelchair users in many markets only have the “choice” to use one or two of the big, national CRT vendors.

With fewer and fewer companies left, and those that are left having to continually tighten their operations to make a profit, it’s no wonder that customer service satisfaction continues to decline, while sales and repair wait times continue to rise.

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He came over with a vendor tech, and after some mucking about, he realized that his usual tricks didn’t work and there was something off with my caster position and seat height, likely due to an error in the customization process. A few days later, he called me back and let me know that any potential solutions would cause problems elsewhere, so TiLite would be making me a new frame.

Even with a few errors, the first frame felt good. But the remake is everything I could hope for. It’s comfortable to sit in. I can push miles in the city without my shoulders or neck hurting, and the front casters float over grass and dirt when I’m out in the country. When I run errands, I can lift the frame into the car without my bicep feeling like it’s about to detach from my shoulder. Titanium and carbon fiber may seem like a luxury, but not when you’re trying to keep your body from imploding by the age of 40.

Some wheelchair users really only need basic equipment. But for many of us — active wheelchair users who are trying to squeeze as much out of our limited function as we can — lighter components, more durable materials and customized seating can make all the difference. Maybe someday our medical system will recognize this. Until then, we’re going to have to keep fighting for what we need.

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