Imagining New Possibilities
Driving Control Innovations Put Independent Mobility Within Greater Reach
- By Laurie Watanabe
- Jul 31, 2019
SMART CITY IN EYE: ISTOCKPHOTO.COM/RYANJLANE
In 1844, French writer Alexandre Dumas published The Count of Monte Cristo, a literary classic with themes of determination, justice and freedom. In the book, Dumas described a man “in an arm-chair, which moved upon casters.” Though the man could only move his eyes, Dumas noted he greeted visitors “with a quick and intelligent expression” and was able to communicate because his “speaking eye sufficed for all.”
Today, we know this condition as Locked-In syndrome, caused by severe brain injury, such as a brainstem stroke or infection. Amyotrophic lateral sclerosis (ALS) patients can become locked in; they remain cognitively intact and aware, but are only able to move their eyes.
Noirtier, the man in Dumas’s novel, was wheeled around by caregivers. But had he been a real client today, Noirtier might wheel himself around, in a power chair driven via a new generation of alternative driving controls.
A Time of Breakthroughs
Lisa Rotelli is Director for Adaptive Switch Laboratories, which creates and manufactures a wide range of alternative driving controls.
“I think this is a very exciting time,” Rotelli said. “I believe there’s a lot of moving forward with technology, which is wonderful. Technology is being developed for patients with weakness disorders, like ALS or SMA [spinal muscular atrophy]. Obviously, eye gaze is becoming more and more relevant. But there are still needs, in my opinion, that are not being met.”
In fact, while Rotelli is a fan of eye-gaze technology — “I like eye gaze and I think it’s wonderful” — she believes it’s critical for clients to stay connected to their technology even when they’re not in their power chairs.
Certain alternative driving controls, Rotelli said, “can be very environmentally dependent. The patient that is down to just being able to use eye control or something like that has a lot of needs that need addressing. That person needs to be able to change their position often, and it’s really important for them to be able to do that — even to be able to drive better sometimes because the camera’s in a better range. They also need access to technology, and how are they getting that access?”
Gabriel Romero, VP of Sales & Marketing for Stealth Products, which designs and manufactures alternative driving controls, is also excited about advances in technology.
“It’s awesome to see technology all around us changing,” Romero said. “It’s even better to see more manufacturers finding out how to access those technologies, and it’s awesome that we are starting to see a lot of new things coming into our industry. They may not be new in the sense that it’s the first time we’re hearing about them. But they could be new because people are now actually acquiring them, instead of those things being available [only] in Europe.”
Eye gaze is one technology that Romero said has been discussed and experimented with for years, even though it’s only recently become commercially available (see sidebar).
“Now there are better cameras,” he said. “There’s better software. And it’s awesome to see that, because it’s a great opportunity for clients. Not just the ALS community, but clients with Locked-In syndrome, who have nothing to use except their eyes. So it’s exciting to see that starting to come around.”
With new technology and new abilities, however, come new questions, such as how to harness those abilities to their fullest.
New Possibilities, New Questions & Concerns
New alternative drive control technology is putting independent mobility within reach for larger groups of clients. But new questions and concerns always accompany new technology.
Despite the greater functionality of alternative driving controls, Romero said, “The biggest struggle I see is still fear from the families. You have parents that are starting to hear about their child’s limitations. They see that, and they have economic struggles and financial responsibilities like everyone else does. Now we’re asking them to buy a larger vehicle for a power chair, and we’re maybe asking them to consider another home, depending on the doorways and access.”
Romero cited a recent encounter with a devoted father and his non-verbal 7-year-old daughter, who arrived in a manual wheelchair that her dad pushed. The dad claimed his child didn’t understand physical dimensions and spaces; when he lay her in the middle of her parents’ bed, for example, she was terrified she would fall off.
Romero offered to let the little girl try out Wild Thing, a Fisher-Price Power Wheels toy modified by Stealth Products with hand controls and specialized seating. Stealth uses Wild Thing to assess young children for power mobility readiness.
The child began driving immediately and masterfully.
“When I’m looking at the psychology of alternative drive controls,” Romero said, “I’m looking at this dad and wondering why his daughter isn’t in a power chair, because she’s driving around [in Wild Thing]. I see the dad’s very excited. But then you begin to understand about the vehicle and economic struggles.
“It had nothing to do with Dad not being engaged. He’s a good father, you could tell she was the world to him. But what are some of their struggles? He started saying things like ‘This can fit in a [car] trunk.’ He saw her hit a wall and he said, ‘She can’t hurt herself or hurt anything.’ I had her come and hit me in the leg to prove a point, so she could feel good that she couldn’t hurt anybody or be hurt. So when you start checking off these psychological concerns, then you have an open platform for discussing the core stuff, the training, the applications.”
So much of the power mobility challenge, Romero said, is related to caregiver fears. “I’ve never met a child or a person who does not want to move,” he explained. “I’ve met a lot of people in the room who don’t want them to move or don’t think they can move. That’s the psychological aspect of it. It’s not the psychology of the person in the chair, it’s the psychology for everybody else who’s dealing with this.”
Rotelli’s concerns are related to access to processes such as independent communications even when clients are not in their power chairs.
“To me, [during] a wheelchair evaluation, we try not to look at it as an hour eval on how they’re going to drive,” she said. “It’s really a 24-hour eval of ‘What are the things in your life that you’re trying to access?’ A power wheelchair is not just a mobility device anymore, so how are we going to get you access to your phone for safety? How we’re going to get access to those things is critically important to build in up front and understand up front so we make better alternative control products.”
Anticipating Future Needs
Precise seating and positioning are key to successful driving via alternative driving controls.
“If you’re using your head to access a switch,” Rotelli said, “to help with fatigue, you have to be able to change your position to help [conserve] energy throughout the day. It’s critically important, not just for pressure relief. The more someone sits statically, the more that gravity is going to affect them. I need to be able to help their bodies make positional changes so they can be engaged, have more energy and be able to drive longer throughout the day.”
Rotelli noted that many clients with ALS choose to sleep in their power chairs “because that’s where all their technology is. And that is where their technology is tied to. What I talk to people about is ‘What happens when you’re not in your power chair? How are you going to have access to those technologies?’ And the answer to that is ‘When I’m sitting up, I have access this way. When I’m laying down or in a different chair, I don’t have the same control, so I need to access it in a different way.’ We need very adjustable, adaptable systems that can move with the patient.
“We work with a lot of patients who start with joysticks and possibly change throughout their lifetimes, going down to switches. Fiber optics can be a very good option for them. What we have to remember is if somebody has a diagnosis that is going to change, we have to be sure up front that we understand that and we can build in change with them.”
One key, Rotelli believes, is changing the way that the industry looks at seating and mobility assessments.
“We need to expand our evaluation process,” she said. “Do you have a communication device? I need to know how you’re using that device. I need to know so I can understand if we need switches: What types of switches, how many switches? Are you using eye gaze? What do you do when you can’t use eye gaze?
“People need to understand how they’re going to go from driving to changing their seat, or from driving to talking. Picking a chair is a really involved process. I need to know: Are you using a communication device? Are you using a computer or do you plan to? Do you need access to a phone? What kind of phone do you have? What kind of seating are you planning on having in your wheelchair? How can you move yourself, independently, to all of those functions? The list goes on.”
One of the most exciting alternative driving control technologies to emerge recently is Independence Drive, a system controlled by the power chair user’s eyes. At this time, the system is being distributed by National Seating & Mobility (NSM) and Numotion.
“We are very excited about this technology and our partnership with Evergreen Circuits because it aligns 100 percent with our mission to continue to enable mobility in people’s lives,” said Bill Mixon, CEO of NSM. “New technologies like Independence Drive are evolving our industry and is a great example of how technology is truly changing our clients’ lives. At least a part of the future of CRT is really going to be about how we as an industry continue to leverage best-in-class technology to the betterment of our clients.”
Independence Drive is the brainchild of a team of creative thinkers, including former NFL star Steve Gleason (www.teamgleason.org) and Jay Smith, CEO/founder of Austin-based music technology company Livid Instruments (www.every90minutes.org), both of whom have ALS. Evergreen Circuits is the system’s manufacturer; Jay Beavers is the company’s Managing Member.
“Industry statistics are that between 10 and 15 percent of people who have a power wheelchair use an alternative drive control system of some kind, whether that’s a chin joystick, a head array or a sip-and-puff,” Beavers said. “I think we’re going to find that eye-control devices are a good choice for a large segment of that market. I’ve been working with people with spinal cord injuries and with the VA [Veterans Affairs], and with people who have chin joysticks and head switches today who are considering whether this could be a better choice for them. Not only does it give them a great level of control over their wheelchair movement, but it also can integrate with how they connect with computers, how they browse Facebook, how they communicate if they use a speech-generating device.”
Despite all its abilities, Independence Drive doesn’t require a ton of extra equipment to operate. As Eric Grieb, VP of Commercial Development for Numotion, explained, “It’s an addition of a tablet with an eye-tracking camera and software. In terms of additions to the chair, it requires just a few things. You have to have an input/output module or a SCIM if you are not using an enhanced display. If you’re using an enhanced display, it’s going to plug right into the 9-pin on the enhanced display.
“I think the majority of the folks who are not new [power chair] users likely will already be alternative drive users of some sort. In terms of the actual Independence Drive, it’s a USB cable, an additional 9-pin, and what they call the Independence Drive interface (IDI), which is what allows the connection to either the augmentative communication device or the tablet that’s being utilized to drive at this point in time.”
Jay Smith uses Independence Drive to operate his power chair.
Grieb test drove the system and found it quite easy to learn. “Essentially, they’re utilizing a special eye-tracking camera made by Tobii, which utilizes sophisticated image processing software to track the movement of the user’s eyes. Movement of the chair is initiated by looking at the appropriate transparent directional button. We’re allowing the navigation through the view on the tablet screen versus looking at the world around us as we typically would. That screen is projecting the world around you through the camera, and your eye-gaze buttons are transparent buttons that are overlaid on that view.
“I was able to get in and drive it within about two minutes. I was in a crowded environment, and I didn’t feel nervous that I was going to lose control of the chair or anything like that. The camera system is quite responsive to the user’s input. You really aren’t obstructed. You’re going to get a very proportional view of the environment you’re driving in.”
Getting Everyone Involved
Darren Lowman, NSM’s Chief Supply Chain Officer, said the company’s ATPs have been enthusiastic about Independence Drive. “Our ATPs have had access to this equipment and have provided feedback in terms of what specific [clients] could work well with this technology. We have invested in demo equipment, we have a wait list today, and we are considering buying incremental demo units to get the equipment further distributed to ATPs who have candidate clients in order to do the appropriate assessments with those folks. This is gaining momentum, and there’s a lot of interest from our ATPs.”
Beavers said, “We’ve put over 3,000 people in a chair at this point to try it out. It’s really intuitive for people to understand and use. We give them a 15-second intro, and typically, they’re off and driving. Anytime you shut your eyes or look away, the chair will decelerate to a safe stop. It will only drive when you’re actively looking at the buttons. This is a non-latched system, which means it doesn’t stay driving based on the last command. It only drives when you’re actively looking at a directional arrow.”
As with any system, and especially with a system that’s just being introduced, Independence Drive does have some limitations. “I feel that the way technology is moving, this is a giant first step,” Grieb said. “But we have to remember this is a first iteration of this technology. Right now, it does not support the use of power [seating] functions. I think some of that has to do with the limitations of the camera to maintain eye calibration during the shifting of positions.
“It’s really not recommended and shouldn’t be utilized in outdoor environments because direct sunlight can interfere with the calibration of the eyes with the eye-tracking camera. It is a highly functional drive system under normal indoor lighting conditions, and those can vary.”
While people with ALS were intimately involved in the creation of this particular eye-gaze system, Mixon believes a number of complex rehab clients could ultimately benefit. “We believe that this is going to enable people with some of the toughest conditions that we serve elongate their ability to effectively achieve independence and mobility on their own,” he said. “Think about how liberating this is if you have ALS and at some point, you’re no longer operating your chair. With this technology, you still have some degree of independence in your life. This is the direction our industry needs to go in terms of embracing technology to deliver the most sophisticated and capable solutions that we can.”
Ideally, the future of alternative driving controls will be always evolving, so that more power wheelchairs are able to drive and reposition themselves with ever-increasing confidence.
“I’ve had doctors contact me who are working with patients with different levels of consciousness,” Rotelli said. “They’re talking about finding a way so they can respond and react. There’s a lot more patients like that than you can imagine.”
The more empowered clients become, Rotelli added, the more they are able to do. “I have seen someone in a stroller who, when they start being able to change their own seat position, they can find a spot where their hands work better. They can hit more switches. I’ve seen it. Once they realize they can do something, they can start doing more. I had a student who had SMA I who came in on a gurney. I got a power chair, laid it flat, and got a fiber optic switch. He could move one index finger. We went for a walk, and he was in charge of going [forward]; when he let go, he’d stop. I was in charge of turning. They ended up getting him a power chair, and when I went back six months later, he was sitting at almost 90° and had four switch sites.
“He himself didn’t know he could do it. When he sat up, he could use his hands better. Gravity, or the lack of it, was able to help him more. When somebody can be in charge of their own position and their own interests, the things that can change are just phenomenal.”
This article originally appeared in the August 2019 issue of Mobility Management.