Mobility Equipment & the Family: How AT Impacts the Psyche
- By John Storie
- Aug 01, 2012
As rehab professionals, we all
understand the obstacles we
face daily trying to get our
clients the most appropriate mobility
device to meet all of their functional
needs and maximize their independence. When working with children
with assistive technology needs, the
obstacles, and many times the outside
forces, make attaining that goal much
When we are part of the clinical team
working with a disabled child, there is
one main factor that must always be at
the forefront of our minds: Sometimes
the most appropriate device for the
child is the one that meets the child’s
needs as well as the parents’. In some
cases, it is hard enough for parents to accept that their child requires
some form of assistive device, so we need to find the products to
help ease their minds rather than increase resistance.
There are many positive and negative psychological effects that
impact parents when their child has a disability and requires wheeled
mobility for maximum independence. We could fill this entire magazine
and still have much to say about the many psychological effects
that assistive technology can have. In this article we’ll look at just
three key areas where we can help.
When It’s Time to Look at Assistive Technology
Families tend to feel that once they start down the road of a manual
or a power chair, they are eliminating any chance for their loved one
to ever walk again. They also tend to feel that all goals will now be
directed toward being more functional with a manual or power chair
and will limit rehab goals of walking, and many families can have a
hard time dealing with that.
We first need to make parents realize that this is not the case at all. Communication and education are keys to moving forward. For any
of us who have studied or taken classes on basic child development,
there is one point that is referred back to time and time again, and
that is exploration. Exploration is the key factor that begins a chain
reaction of developmental milestones for children. This developmental
process remains true for a child with a disability; it’s really just
the milestones that may be different.
As rehab professionals, we’ve all seen a child the first time he or
she gets into a power chair. When the child pushes the joystick or hits
that switch for the first time and the chair moves, the reaction makes
us realize why we chose this career. The empowered look of delight
on the child’s face is priceless, and now it has triggered something in
his or her mind. This is why mobility devices for disabled children are
not just for functional applications, but they are truly developmental
tools to help the child grow and progress.
Now, we are able to share this with the parents and begin showing
them how those physical and mental developmental milestones can
start to be checked off the list.
Once that child realizes that he or she is just like all of his or her
peers but simply has a diff erent form of mobility, the team will likely
see significant changes to the child’s independence level. For a child
with limited mobility, just being able to explore and do something he
or she was previously unable to do opens up a wide range of options.
There is no right or wrong answer on when a parent or caregiver
should look at assistive technology. However, if you ensure the family
that you’re still working on keeping their child as independent as
possible and meeting all of the child’s mobility needs, you can help
alleviate strain to the families and caregivers who are making decisions
for the child.
What’s the Most Appropriate Device?
There is no perfect answer, but it is important that the needs of the
child as well as the parents are carefully evaluated and discussed
among the clinical team (therapists, social workers, ATPs, manufacturer
representatives, etc.) as well as the parents; they are a big part
of the team, too.
The device must maximize the functional needs of the child, but
let’s remember that this is still a child who, whether he or she had a
disability or not, would need a caregiver. We need to make sure the
device is something the parents can handle and are comfortable with
in order to properly take care of their child.
For example, in some cases, children aren’t full-time drivers of
their chair, so this is where attendant controls and ease of attendant
driving comes into play.
Another point is transportation. It might not be appropriate to
provide a device that is very heavy and not able to be transported. A
chair that cannot accompany the child to school because the parents
can’t get it in the car can hinder the child’s development and defeat
the purpose of the mobility product because they are not able to use
it. So this is where the trial and error session begins. As rehab professionals,
we must review and try many diff erent devices with the
child and their parents to find something that meets the needs of all
Getting It Paid For
Funding will always be a point of contention when it comes to
anything and everything we do.
The emotional and psychological strain that it puts on a family
with a loved one with a mobility device is extremely hard. When
it comes to pediatric mobility devices, funding can be a bigger struggle because in many cases the ideal situation for many
disabled children would be to have multiple assistive devices,
but we know multiple devices won’t be fully covered. Often, the
funding isn’t there.
The first thing we need to do is educate: Let the parents know
what is available to them. Parents will do whatever they can for their
children, so we need to let them know all of the devices that can
help their child.
Now, on the other side of the coin, when resources are not
good for the parents, the pressure can be extraordinary on the
family unit: How are we going to be able to afford a power chair
and an appropriate vehicle lift? This is where we must share with
the parents how to properly research organizations that are out
there that provide assistance to children with special needs. It is
amazing what is available when parents are persistent and have
What it all comes down to is being able to find the happy
medium for all parties involved. Communication is the key for trying
to accomplish this goal. When the clinical support team is able to
provide families information on all that is available as well as the pros and cons to each situation, it tends to lead to a well-informed
solution that benefits all parties.
This type of consistent interaction and teamwork certainly
helps to ease many of the concerns families have when their child
requires assistive technology and also helps them to focus on
growth and moving forward versus worrying about “what ifs.” It is
important that we as rehab professionals ensure families are well
informed and provided a large amount of support when they have
a child with a disability. And this support needs to continue well
into the future.
This article originally appeared in the August 2012 issue of Mobility Management.
John Storie is the director of Quantum field sales for Pride Mobility Products Corp., Exeter, Pa. John can be reached via e-mail at email@example.com or by calling (800) 800-8586.