Words Matter

How the Language that CRT Uses Impacts Policy & Funding

collage of colorful talking head illustrations


Language evolves. This year, Merriam-Webster added long hauler (someone experiencing long-term effects while recovering from an illness, such as COVID-19); and BIPOC (acronym for Black, Indigenous and People of Color) to its dictionary.

Language within Complex Rehab Technology (CRT) and the disability community evolves, too. Some changes win nearly universal approval: wheelchair-bound and confined to a wheelchair are inaccurate and inappropriate, period. But other changes provoke a range of opinions. For example, who are the people who use seating and wheelchairs? Industry professionals usually call them clients, a clinical term. More broadly, they’re consumers.

But riders is gaining momentum. The term still implies people, but adds the details of motion and movement. It’s a richer term. And riders has a positive connotation, since people ride bicycles, motorcycles, subways, roller coasters, etc., for transportation, enjoyment… maybe a little of both.

In contrast, imprecise language can make discussions less accurate or exact. When policy is then based on imprecise or misunderstood terminology, access to CRT can be endangered.

Here are three common CRT terms that have caused technology, coverage, or funding issues.

Headrest vs. Head Positioning

Gabriel Romero, Stealth Products’ VP of Sales & Marketing, is a vocal believer in the importance of head positioning for people who use wheelchairs. He recalled a colleague alerting a clinician: “I’m going to warn you about Gabe. He’s going to say everybody starts with the pelvis. But Gabe says you’ve got to look at the head. The head can dictate what the pelvis is doing.”

Romero chuckled good naturedly at the memory. “I’m not saying the pelvis isn’t important,” he said. “What I’m saying is if I’m sitting perfectly aligned, gravity is going to start to become my enemy. If I don’t have a place that I can position my head, guess what’s going to happen. Even able-bodied people will put a hand out so their head can be supported by their hand.”

Romero’s point: A head that’s not supported will cause a positioning chain reaction. “You’ll start to see spinal scoliosis,” he said. “You’ll start to see pelvis rotation. All this starts to happen because the head, which is looking for support, will find it. I’m not saying the pelvis isn’t important, because it’s extremely important. What I’m saying is when I first look into a room, I might not be able to see the [client’s] pelvis because of a lot of things [blocking] that view. But I can see the head, and it starts to tell me what that individual could be suffering from. And there’s a high probability of where the pelvis will be based on that [head’s] positioning.”

Head support can be challenging because the need for it can change over time… even throughout the day. “I remember a child who was sitting perfectly,” Romero said of one clinic visit he made. “It was the rules you see in textbooks on sitting — that 90-90-90. It was perfect. But this kid had severe tone, so he’d go into an ATNR [Asymmetrical Tonic Neck Reflex]. He’d be sitting perfectly, but a sound would trigger him, he’d go into ATNR, gravity would take over his head, and now he’s leaning on the side of his chair. He couldn’t get back into a stable position.

“If you would’ve seen him when we walked in — he was seated perfectly and holding his head up perfectly. But as soon as he went into this tone, his head hooked around the side of the headrest and stayed there. Some people will get into a different position like this and don’t have the ability or knowledge to get back into a good position. That different position will seem nice, but what happens is they start extending muscles, and the cervical region starts to get affected.”

Which is where headrests come in. E0955 is the HCPCS code for Wheelchair accessory, headrest, cushioned, any type, including fixed mounting hardware, each. But, Romero said, this kind of component isn’t necessarily designed to handle the positioning and support needs that CRT clients often have.

“A headrest is a term in transportation,” he said. “You need it because if your wheelchair goes into a vehicle, you need to have something behind you. You need just an up-and-down type of pad, really. That’s what our cars have, on two rods most of the time. Eventually, the back of my head is going to be aligned with my back, and that pad should stop [the head] from continuing to go backwards. That’s what a headrest is going to do. It doesn’t have to be removable. We used to call it a pad on a stick.”

That’s entirely different from what CRT wheelchair users need. Said Romero, “We had conversations with coding: You realize that an E0955 is just a pad on a stick. It has no adjustments at all. So if I’m putting somebody in a tilt chair, and gravity is taking over: Because of the thickness of the pad and because they don’t have the ability to push it back a bit, their head might be in an awkward position [compared] to where their back is aligned. [The head] is ahead of their back because of where the pad is, because I couldn’t push the pad back. That’s why hardware adjustability and rotation are critical when you’re looking at headrests in particular.

“People will say, ‘I just want a simple 10" pad.’ Okay, but I need to see the person and how they’re going to use it. Do they want more support when they’re tilted? ‘Oh, they hardly go back that far when they’re tilted.’ Okay, so they need it when they’re upright so they can just put their head back and get support because they’re never tilting? Or if they’re tilting, they’re not using it to the maximum that they should. So they’re using it just for minor adjustments [such as using tilt to reposition].”

Romero has also used adjustable head positioning and supports to help a client strengthen neck muscles. “It’s understanding the diagnosis — is there an ability to gain muscle strength back? What we used to do for people who were new [spinal cord] injuries, and you didn’t know how much they would gain back — [the physicians] would put them in a halo, and they were locked in. But as soon as they took them off the halo, we would create a curvature of pads around them like a halo. They could fall forward, hit that pad, and start to come back in small increments. In that space, they were gaining muscle strength back, using their neck muscles.”

With head positioning, the challenge is explaining that the familiar definition of headrest doesn’t apply to CRT. “Our funding system worded that in a way that you couldn’t make the advancements that were important, like with hardware that’s adjustable or hardware that flips away, hardware that rotates and gets into unique angles for people who have already established a deformity that you’re going to have to work to support,” Romero said. “Or in younger people, to try to reposition them or setting boundaries so they don’t go beyond that. A headrest, how it’s defined in coding, it’s not to have fore and aft adjustment. But when you really need support, that’s when you get into systems that can support [the head] and almost cradle it in a way that allows you to completely relax. Not hang off of it, but actually will allow you to say that something is holding your head and cradling your head.

“I’ve seen people who drop their heads because of their positioning. When you’re aligning your body and your head is too far forward, your head is going to want to drop.”

Manual Chair Conundrum: The K0009 Loss

One example of how much words matter — and how misinterpretations can have dire results — was the elimination of the K0009 manual wheelchair code in 2013.

Deceptively simple in phrasing — Other manual wheelchair/base — the K0009 code included chairs that were crucially different than those in the K0005 (Ultralightweight wheelchair) code.

The Centers for Medicare & Medicaid Services (CMS) decision to eliminate the K0009 code caused a number of ripple effects. Most immediately, it forced K0009-coded wheelchairs into other codes… regardless of how appropriate the fit was. Ultralightweight wheelchairs with the K0009 code were relegated to the K0005 code, for example.

K0005 had been casually used to mean ultralightweight wheelchair before the K0009 code was discontinued… but making the K0005 code seem synonymous with ultralightweight chairs — all ultralightweight chairs, even those custom built for a single person and therefore more complex and expensive to make — might have led payors to conclude that all ultralightweight chairs were more or less the same in design, function, and cost.

Rita Stanley, longtime CRT policy and funding expert, pointed out how K0005 — used not as a code, but as the name of a type of wheelchair — could lead to confusion.

“If you just refer to it as ‘Oh, that’s a K0005’ — first of all, most people don’t speak HCPCS codes, so it’s like ‘What’s that?’” she said. “But also, when you look at the HCPCS code set, you’ve got K0001, K0002, K0003, K0004, and then K0006 and K0007 that are classified as standard manual wheelchairs. And in the CRT arena, you basically have an E1161 [manual adult-sized wheelchair, includes tilt in space] for a broad range of tilt in space now, and you have the K0005, which is everything else. When you look at the products that are code verified on the PDAC Web site, you’ve got a broad array of technology with anything from minimal rearaxle adjustment, which has no definition in the HCPCS code, all the way to things that can be basically custom ordered from a manufacturer and built to those specifications.

“If you say to somebody, ‘You need a K0005,’ that’s a huge bucket that you offered up.”

Then a few years after the K0009 elimination, there was a major change involving the K0004 (High-strength, lightweight) wheelchair), Stanley added.

“Years ago, pre-2016 when the entire country dropped in reimbursement for high-strength lightweight chairs, you could get chairs that had minimal adjustment,” she said. “But back when we were talking about revising manual wheelchair codes, there was some discussion about a positioning chair, a chair with limited adjustability. It was really those chairs in the K0004 code that were borderline moving-into-an-ultralightweight category. They missed [being coded as K0005 wheelchairs], but they still had a lot of components that were adjustable.”

But given capped rental payments for K0004 wheelchairs, “Now you can’t provide those [more adjustable] chairs for $49 a month,” Stanley said. “So a lot of the manufacturers have either discontinued them completely or they’re pretty much limited to being available at the VA [Veterans Affairs], where HCPCS coding and payment don’t apply. But for the broader population, even if you wanted to buy one and pay cash for it, you’d have a real hard time finding that kind of chair available on the market now.”

The second major change caused by the loss of the K0009 code involved adult manual tilt-in-space wheelchairs.

“When [CMS] got rid of the K0009, they modified the definition of the tilt-in-space chair,” Stanley said. “If [the chair] has 20° of tilt or more, now it’s tilt in space.”

That new definition of tilt in space — as little as 20° of tilt, when previously, tilt-in-space chairs were required to provide far more tilt to enable significant weight shifting — has resulted in a wider array of people using chairs in the E1161 code. Back when E1161 chairs had to offer much more tilt, many of its users were completely dependent on others for their mobility. But once the E1161 requirement was changed to just 20° of tilt, this category of wheelchair also became more popular for stroke patients, some of whom will regain some mobility function.

“You really have two buckets of consumers that are going into those chairs, but they’re one code,” Stanley said. “So even if you say tilt in space, are we saying a single tilt-in-space code is sufficient? It makes it really hard to write a policy when you’ve got such a broad range of needs. They used to have it at 40° [of tilt] because evidence showed you had to have at least 40° of tilt to start to offload, or you had to have a combination of tilt and recline to offload pressure.

“Now you’re all the way down to 20° in a tilt-in-space chair. If you can tilt 20°, you do get that sense that gravity is holding you upright in your chair, which is what those stroke patients need. They don’t need that positioning of 40°, but they do need just enough tilt to say gravity is assisting me to stay upright. But again, very different medical necessity criteria.”

The two different user populations, Stanley added, have led to an evolution in E1161 wheelchair design: “Now unless you’ve got a manufacturer who’s really focused on that population and developing some unique technology, E1161 chairs have a tendency to be heavier in their overall weight, though they get really low to the ground, and they have 20° of tilt to help get [clients] positioned in their chair so they can foot propel — while before, most people going into those chairs were predominantly dependent for mobility purposes. It’s very different populations.”

Ultimately, the CMS decision not to identify K0009-coded manual wheelchairs as having unique characteristics has restricted consumer access, Stanley suggested. For ultralightweight chairs, “the real harm came when the decision was made that titanium and composite materials — all materials [were part of] K0005. You can make that decision after the fact because no materials were ever defined into the code. The code was never defined as aluminum; the code was never defined at all in terms of materials. It was only defined in terms of weight, and the weight is less than 30 lbs., which back in 1993, when the codes were created, that was probably the most inclusive for those kinds of chairs.

“But look at what’s out there now: Chairs that, depending on the configuration and what’s on it, are less than 20 lbs. That’s a huge difference. Also, the E1161 and the K0004 or the K0005 have no weight capacity assigned to them in the code requirements. CMS is saying there is no weight limit. But yes, there is.”

Medicare now has no clear, practical path for a consumer to upgrade to a more costly titanium or carbon fiber ultralightweight chair, even if the consumer is willing to pay out of pocket. “The operational problem is that because [CMS has] said it’s included in the base price, now it’s considered unbundling if the supplier were to try to charge the patient the difference,” Stanley said. “The only way a supplier would be able to provide that really high-level, highly adjustable, super ultralightweight chair that the client needs would be to say, ‘I’m not going to do it as an assigned claim. You’re going to have to pay for the entire chair up front and wait for Medicare to reimburse you.’ Depending on the client, if they’re dual eligible, which a lot of our people are, then the supplier can’t do it non-assigned because [the client] has Medicaid. So we’ve got this subset of people that are just Medicare, but also have enough money to pay out of pocket for an over-$3000 wheelchair and wait for Medicare to reimburse them. Only a handful of people are able to access the technology that they need.

“It’s a double whammy. When they were in that K0009 code, reimbursement was individual consideration. Medicare paid for what was actually provided. As soon as you moved it into a specified code — then you had a fee schedule associated with it, and [CMS] said, ‘Oh by the way, all those special features? They’re included in the base price, you can’t bill for them.’”

Part of the problem, Stanley added, is a failure to understand the power that a code can have. “On the CMS side, when you ask what are codes used for, their answer is ‘It’s merely a billing mechanism.’ It’s not meant to narrowly describe technology. And my answer from where I sit is, that would be lovely, except it is the foundation for coverage and payment. And when you have widely dissimilar products in the same HCPCS code, establishing a coverage policy that makes sense and determining payment that is adequate for access becomes impossible. That’s why I’ve spent so much of my career on HCPCS coding. Because as crazy as it is, it’s the foundation for everything that matters.”

And at least in some cases, the same could also be said of the language spoken every day in CRT.

This article originally appeared in the Sep/Oct 2021 issue of Mobility Management.

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