Page 19 - Mobility Management, August 2019

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 avail- able [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 soft- ware. And it’s awesome to see that, because it’s a great oppor- tunity 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 ques- tions 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 strug- gles 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 psycho- logical 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
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