Justify It: Alternative Driving Controls
Having Driving Options Puts Power Chair Operation Within Reach for More Clients
- By Laurie Watanabe
- Jun 01, 2015
One of the more elegant and impressive components of today’s power wheelchair is its joystick. This relatively small component, along with the electronics it’s connected to, can operate powered positioning functions, such as tilt and recline. The joystick also makes the chair go, and can do so in a nuanced fashion — as a proportional control, a joystick can make a chair advance more slowly or more quickly, and can make multi-directional turns according to its user’s input.
Of course, not every power chair user is capable of using a traditional armrest-mounted joystick. Switch systems, as well as joysticks that stray from traditional sizes, designs and mounting locations, can offer independent positioning and mobility opportunities for clients who would otherwise rely on caregivers to perform those functions. But as with any deviation from the “norm,” alternative driving controls can be challenging to justify to funding sources more accustomed to traditional joysticks. So when are alternative access options called for — and what information should ATPs and clinicians include to get them paid for?
When Is Alternative Access Indicated?
When should a power chair user use alternative driving controls?
It sounds as if the answer should be straightforward — i.e., When he/she can’t use a traditional joystick. But as with so many topics in complex rehab technology, there’s more than one simple answer.
“Most people who use a power wheelchair are able to use a standard joystick,” says Michelle Lange, OTR, ABDA, ATP/SMS, Access to Independence Inc. “In general, if a person is unable to use a standard joystick, it is due to increased muscle tone, decreased motor control, muscle weakness or paralysis.”
The way a traditional joystick operates requires consistent and exact input from the power chair user.
“A standard joystick provides proportional control of the direction and speed of wheelchair movement,” Lange explains. “The joystick can be moved anywhere within a 360° circle, and that dictates the direction of wheelchair movement. The farther the joystick is deflected from center, the faster the wheelchair moves. In order to take advantage of this proportionality, the driver must be able to balance their flexors and extensors (co-contraction), grading the force and distance of movement. This is difficult for clients with increased muscle tone and decreased motor control.”
Lisa Rotelli, director, Adaptive Switch Labs, adds that ATPs and clinicians also need to consider a client’s “fatigue factor.”
“Does the client have fatigue issues?” she notes. “That can happen in clients with both high tone and low tone. Is it very fatiguing for them to keep trying hard, hard, hard to do something? Is it affecting their day with mobility?”
Rotelli says the seating & mobility team also needs to examine how the client’s abilities change throughout the day. “Typically, that happens with people with weakness, but if I have a client with cerebral palsy who is working so hard and is sweating and trying to keep their hand on that joystick, and it comes off repeatedly, and they work so hard to get it back onto the joystick — by the end of the day, they usually push through, but they are worse drivers. They don’t go places they want to because they just can’t.”
The Pediatric Equation
There is another scenario in which alternative access can be a good idea.
Gabriel Romero, director of sales & marketing for Stealth Products, points to a relatively common complex rehab situation: when the client has never before experienced independent mobility, and when a significant learning curve is therefore expected.
“Pediatrics is a great place to start when understanding the importance of gaining gradual experience in alternative controls,” Romero says. “To Michelle’s point, due to the complexity of a proportional joystick, a child or first-time independent driver may have a difficult time relating speed and direction. In my experience, understanding physical/environmental/psychological challenges creates a better understanding of a starting place and expectations of the outcome. Gaining gradual experience for any first-time power wheelchair user is important in order to understand the complexity of acceleration and direction in one drive control.”
Advancing technology has made it possible for very young children to give independent mobility a try, sometimes before their first birthdays. But for these clients, who have not crept, crawled or walked, Rotelli takes a different approach.
“With very young children, I actually never start with a joystick,” she says. “I want things split out. I can’t expect a child to understand that a joystick has 360° of rotation, and the further I displace it from neutral, the faster that chair goes. [A joystick is] very programmable, but having to get exactly on the forward direction and not slightly right or slightly left — I’ve seen them get super frustrated.”
Instead, Rotelli prefers to offer these littlest clients the advantage of simplicity as they learn.
“I put them on switches so that when they touch one switch, it consistently does the same thing,” she says. “It’s like you’re learning to crawl before learning to walk. These are steps that you have to take to understand how to manage the machine they’re driving — to make it not frustrating to get where they need it to go. I’m trying to help them build a neural pathway to learn. That’s the only way they’ll ever be able to find a way to get to something.”
Romero is also an advocate for considering a switch system for new, young wheelchair users.
“Alternative drive controls are always a primary beginning in understanding the client’s abilities,” he says. “A switch does not have the complexity to distinguish acceleration and direction at the same time; it’s either on or off. I can control function through the chair’s electronics, and it allows me to focus more on the user’s abilities. In my opinion, you cannot go wrong by starting with an alternative drive control, but each case has its specific circumstances.”
He also believes that helping new clients to experience early success with power mobility is crucial to later learning.
“In working with individuals and a first-time power assessment, my experience has been creating achievable wheelchair movements through their driver control,” he says. “With a child, this could mean starting out turning in place and learning to understand the stop/go method. With an adult that has had experience in movement, this could mean teaching them how to access their new life with limitation and function. Success isn’t measured by accessing everything on the chair in the first assessment, but by accessing the heart of everyone involved.”
When Alternative Access Is Not Indicated
Despite the wide range of programmability that alternative driving controls offer — and indeed, that’s one of their big advantages — as with every complex rehab component, they’re not the perfect solution for every client.
“Each alternative driving control requires specific motor skills to operate, so certain controls are not indicated for clients who do not have those skills,” Lange says. “For example, a client with a high-level spinal cord injury will be unable to use their extremities to control the wheelchair. A client with ALS is typically unable to use a sip ’n’ puff control, as this requires the driver to control the air pressure within the mouth. Persons with ALS lose the competency of their soft palate, and air escapes from the nose, rather than building pressure within the mouth.”
The important take-away of this situation is that a learning curve, even a steep and long one, should not automatically be taken to mean that alternative access is not a good option.
“Many clients are able to hop into a power wheelchair and drive immediately with very little instruction, even when using alternative controls,” Lange says. “Other clients will require more support. If a client is having difficulty using the driving control, this may be due to inadequate positioning, an inappropriate driver control, inappropriate programming or the need for mobility training. The client must be positioned optimally to facilitate function, including use of driver controls.”
Noting a real-life example of a client who needed more time to learn, Rotelli says, “I actually had one client who we put on switches when he was 5. He finally mastered a joystick — and they did work on it a little bit at a time — when he was 19 years old. But he had independent mobility that entire time. And he was motor apraxic, so he would never have gotten there without all that practice.
“This really is about our sensory motor system and helping them build motor skills. It’s not intuitive. It’s about motor learning, and we’re helping them learn motor skills.”
Funding & Alternative Access: What to Tell Payors
As usual, the other half of the alternative driving controls equation is the funding source, which will require justification of these electronics — and in many cases, the multiple components required to make the system work.
“Documentation requirements, of course, vary by funding source,” Lange says. “In general, when justifying an alternative drive control, it is important to document why a standard joystick will not meet the client’s needs. Alternative drive controls also require expanded electronics, and these also need to be documented. A display, reset switch and attendant control may also be indicated and must also be justified. A display provides a means of turning the power wheelchair on and off, may include a port for the reset switch and provides valuable information for the driver. The reset switch changes mode of operation of the power wheelchair, allowing the client to access other features such as power seating. The attendant control may be required if the client is using an access method that a caregiver cannot readily use, such as sip ’n’ puff.”
Some clients with complex conditions may not be fully functional on any single system, or might experience changes in their physical abilities throughout the course of a day. Thanks to today’s electronics advancements, “hybrid” systems can be a helpful option.
“For example, I may have a client that cannot access a switch behind their head due to needing a stable resting position,” Romero says. “I might have to find a different location for that switch. By finding another access point, this allows me the ability to be flexible due to a physical requirement the client may have. Having systems that are modular and give multiple access points/switch sites grant you the flexibility of working through physical challenges and allows for a better understanding of effective results.”
And despite the funding complexity of needing to justify two control systems instead of one, Rotelli says it’s possible to get reimbursed for such a setup.
“I know [having two controls] can seem like a hard thing to get funded, but I have rarely found that,” she notes. “As long as the clinician is writing functionally what is happening with that client medically, then it’s not deniable. So say if someone can, for instance, drive a joystick on a power chair, but it’s hard for them to access their seat functions. Then I would document the fact that they are adequate with their joystick for a drive control, but when they get into a tilt mode, they cannot get back on their joystick to un-tilt. They need alternative access in order to be functional with their seating system.”
Rotelli acknowledges that such claims are often denied initially, but she says chances of an overturn on appeal are good “as long as you have explained the muscle tests that you’ve done, and [the client] was functional using this method: This is what we tried, and this is what they were functionally using. I don’t ever say ‘optimal’ or ‘best’ or anything like that. I just say this was definitely more adequate for them, and they showed competency doing this task.”
Defining Client Competency
Speaking of competency with driving controls — when it comes to documenting it, Rotelli says sometimes less can be more.
“What I need to show is why medically, it’s a challenge for [the client] to use a standard [drive control] and why I need to have each piece [of the system],” she says. “They have fluctuating tone in their upper extremities, so a joystick is not a functional means of drive control for them. Therefore, we tried a tray or a head array, and they showed the ability to go and stop and control the device. Talk about their physical motor function. Talk about their fluctuating tone; talk about their motor control that they have in their body. And say, ‘This is what we tried, and they showed the ability to control the device.’”
And then, Rotelli says, it might be best for the clinician or ATP to stop talking.
“End of sentence,” Rotelli says. “We either write way too much about the wrong things or not enough about the right things.”
Those “wrong things” can include unnecessary details about any challenges the client had with the alternative access system.
“The only time I do that is if somebody has the chair they have and we’re trying to modify it,” Rotelli says. “Then I say, ‘For these reasons, this was hard for them in their current piece of equipment, therefore we’re trying this.’ I want to explain what they have, but I’m talking about the client’s body and why each piece of the chair is needed.”
Realistic Learning Curves
A client’s competence with alternative drive controls often gets tangled up in a bigger, very complicated question: Is the client qualified for the power chair in the first place?
Some funding sources — and indeed, some caregivers and families — would like to see a client achieve total mastery of a power chair before being provided one. Their concerns are often safety related, but are still not necessarily realistic given the client’s background and situation.
After all, how many consumers were able to operate 100 percent of the functions on a computer, smartphone or tablet before they ever owned one?
“A key question in power mobility is how well the client must be able to drive a power wheelchair before one is ordered,” Lange says. “We have no clear consensus in the field at this time, but many opinions. Personally, I look for potential and aim for mastery after equipment delivery through mobility training. Typical teenagers have to drive with a parent for an average of 50 hours before even taking a driving test. This time is required to optimize skills, even if the teen has the potential to drive in terms of motor, sensory and cognitive skills. Our clients require time to optimize their skills, as well.”
Some clients need more time to learn to operate power chairs because of their lack of mobility experience, Romero notes.
“In my experience, we have two types of clients,” he says. “One: [the client] who has never had access to be independently mobile. This client usually has an attendant moving them from place to place. The second client would include someone who later in life had an accident or acquired a disability and is now having to access their environment through a power wheelchair. This individual understood boundaries and their surroundings. They knew how to walk through a door, how to pull their chair up to a table, and in some cases how to drive a vehicle, whereas the client who was never physically independent is not able to understand these boundaries.
“I need to have a better understanding of this individual’s environment when I train them. The training curve may be quicker with someone who had experience with their mobility versus someone who never has.”
In the case of pediatrics, Rotelli says, “We’re working with a child typically who has had no mobility experience at all. Power chairs were made and joysticks were made for people who had mobility and lost it. So they have all these motor experiences. They’ve walked, they’ve crawled, they’ve skated, they’ve ridden horses. They’ve done all of these activities early on in life. So they have sound motor skills. But we take these same roles and apply them to someone who’s never had them and that is young. That makes no sense to me whatsoever.”
She uses an analogy of bicycles for able-bodied kids: “Did you buy your kids a bike? Did you set it against the wall and tell your child that when they can ride it they can have it? Because that’s what we do with powered mobility.”
Rotelli points out that training to operate a power chair includes its own benefits and rewards, even beyond learning to drive the vehicle itself.
“There are several studies, and one that was my favorite long ago, in the ’80s out of Cal State Northridge and UCLA, showed the progression of motor control with kids with mobility and the lack of it — they’ve lost cognitive skills when they don’t have mobility. So [the study] actually states that non-mobile children have secondary disabilities, cognitive disabilities because they’re not doing any motor learning skills.”
By training clients to use power chairs, Rotelli says, “We’re teaching motor learning, which is how our brain grows and learns. We’re helping kids in every single aspect of their life by giving them early mobility.”
Expectations for the Future
Is it possible for clinicians to transition at least some switch-system clients to proportional controls later on?
“You definitely can,” Rotelli says. “Children all grow and learn at varying rates. Some kids walk faster than others, some kids read faster than others. I need to give them a foundation of simplicity, and then where they go from there depends on them. Sometimes it’s a year, sometimes it’s a week, sometimes it’s several years. I may introduce a joystick out on the playground or somewhere else. I have clients we have done this for quite some time with: Indoors they’re using switches, outdoors they use a joystick.”
She’s adamant, however, that a proportional device shouldn’t automatically be assumed to be the superior choice for everyone, and bristles when switch systems are portrayed as a second-best option.
“If [the client is] able to get where they want that chair to go, that’s success, and I am all happy about it,” she says. “I’m not going to push them to do something they’re not ready for. We get these dumb hang-ups about mobility, about power chairs. We put way too much emphasis on the machine and not the activity. We get caught up also in other people’s anxiety.”
For many clients, alternative driving controls are truly the best answer — not just a solution they’re stuck with as a consolation prize.
“Having a joystick doesn’t make you more independent,” Rotelli says. “It doesn’t. That hierarchy needs to get thrown away.”
This article originally appeared in the June 2015 issue of Mobility Management.