
In a self portrait, Steve Mitchell tests out one of his alternative drive control systems designed especially for clients with ALS.
Steve Mitchell, OTR/L,
ATP, is an occupational therapist
who works as a clinical specialist in
seating/wheeled mobility & assistive
technology for the Spinal Cord Injury & Disorders Service at the Cleveland
Veterans Affairs (VA) Medical Center. He
has more than 25 years of experience
working with people who have neurological
conditions. The last 12 of those
years have been devoted to providing
custom mobility equipment to veterans
living with spinal cord injury (SCI),
multiple sclerosis, and amyotrophic
lateral sclerosis (ALS).
Once his appointments for the day
are done, Mitchell starts on his second
passion, one deeply and personally
connected to his first. He spends
days prescribing seating & mobility
to produce the best outcomes for his
clients, but dedicates many evenings
to developing systems he may one day
prescribe.
He calls this goal “Open Complex
Rehab Technology (CRT).” Mitchell
hopes it’s the direction that future
assistive technology will take to address the needs of the industry’s
most complex clients.
The Role of Product Configuration
“I work at one of the 24 VA regional SCI centers,” Mitchell says.
“Most of my veterans have complex needs; their wheelchairs play
a critical role in just about everything they do. We will follow each
veteran for life.”
He adds that VA seating clinicians are often responsible for functions
that are performed by the supplier/ATP in other settings.
“When seating clinicians in the private sector evaluate a client,
what they are able to prescribe is frequently constrained by
funding,” Mitchell explains. “Much of their time away from the
client is used documenting the medical necessity of the equipment
to ensure it will be reimbursed. When a veteran requires a
complex rehab power chair, we are less constrained in what we
can prescribe, but many of us must also assume responsibility for
obtaining product specifications and configuring the product
without supplier ATP services.”
Working so closely with products
has given Mitchell insight into how
successful outcomes are created. He
notes that they “require more than
just a clinical understanding of the
user and knowing which products are
available. Knowing how to configure the
product to effectively meet their needs
is equally important. When I’m not
working directly with veterans, I devote
a significant amount of time identifying
the most effective configurations for
the needs of the populations I serve.”
Mitchell acknowledges that this has
gained him a reputation “of being very
product oriented for a therapist,” but he
says, “At the end of the day, I am just a
therapist trying to get the best outcome
for the individual who uses a chair I
prescribe. It’s truly an awesome responsibility,
when you think about it.”
In 2008, the VA made ALS a
service-connected condition, meaning
that anyone diagnosed with ALS who
served in the military became a potential
candidate to receive power mobility
from the VA. “Our SCI/D service formed an ALS clinic the next year,
and we began seeing veterans with ALS in significant numbers,”
Mitchell says.
But there were differences with ALS patients.
“Our service delivery model was completely compressed, because
it wasn’t as if [ALS patients] were going to come in and see me to
reevaluate their seating,” Mitchell says. “Actually, they’re here to see
the doctor for some other reason. Or they’re people I hardly have
the chance to evaluate — they’re in the doctor’s office because they
have a lot of respiratory issues, or they’re newly diagnosed.”
Due to the severity of ALS, how quickly clients can progress, and
how precise their positioning has to be, Mitchell found himself
tweaking equipment for individual ALS clients.
“When I came up with workable solutions in the clinic, I didn’t
want to do more work than I had to,” Mitchell says. “Instead
of having to repeat the same thing, instead of having it done
through our [supplier], I was having it done through the customs department of the manufacturer.”
Technology needs vary from client to client, he adds, including
whether a patient will eventually need respiratory equipment to
be accommodated on the wheelchair. But so many of those needs
can’t be predicted when a power chair is first being configured.
That’s where Mitchell’s “Open CRT” strategy comes into play. It
can be described succinctly via a single word: Modularity.
Holding Onto Old Rules
Modularity would embrace the probability that the best answer
for any particular ALS patient could be a hybrid power wheelchair
system.
One example: “There are elbow stops that I developed that
allow us to work with normal armpads, but if we need to do arm
troughs, we can pull the inserts off the armpads and put those on
there,” Mitchell says. “On one hand, I’m a clinician. On the other, I’m
a product person. What I try to do is interface the equipment with
the person’s need.”
Creating a successful interface, Mitchell adds, can require
adopting new ways of thinking for everyone involved: clinician,
ATP and CRT manufacturer.
“What seems to be happening a lot these days is we’re holding
onto old rules, and we’re not really looking at what’s best for this
population’s needs,” Mitchell says. For instance, while tradition may
dictate a head array for late-stage ALS clients, “What I’m finding is if
I can get a joystick in the right place, most of our guys are going to
be able to use that joystick the rest of the way.”
Preserving function and quality of life is personal to Mitchell,
who sustained a spinal cord injury at 17.
“It was the first three weeks after my injury, and I had sensation,
but it was abnormal sensation, and I was sitting in just a regular
wheelchair in the hospital,” Mitchell said. “I remember being
totally miserable and helpless. To think about these guys at the
end of their lives — their chairs by and large are sitting to the side
because they stopped being driven some time ago. [These clients
are] sitting in a hospital bed on their sacrum, uncomfortable and
unable to move. Where I think power mobility can play a super
important role is if you can give them the ability to control their
positioning in their chair, and tilt and reposition, that’s going to
be 100 percent more comfortable than the alternative —in a bed,
unable to move. I just can’t imagine my last days being that.”
And Mitchell says that’s why Open CRT is needed.
Coming up in Part 2: What Open CRT looks like, and the obstacles in its
way.
The opinions expressed in this article represent those of the author and do not represent official policy or positions of the Department of Veterans Affairs.