Among the most difficult tasks for assistive technology professionals is to
assess a client today and then accurately predict what equipment that client
will need a year, two years or even five years from now. And making those estimates
can be even more difficult when the client in question is an infant, child
or adolescent with a disability.
Nevertheless, funding sources typically expect pediatric seating & mobility
to fit and serve a child for several years, which puts pressure on the rehab
team to choose technology that will be appropriate today as well as tomorrow.
This kind of prediction isn’t an exact science, of course, but here are
some factors to consider when putting together a “growable” pediatric
system.
Independent or Dependent Mobility?
For some of your pediatric clients, independent mobility won’t be possible.
But for many others, especially the youngest ones, selfpropelling or independent
driving will be possible — if not immediately, then eventually.
Therefore, one of the crucial first questions facing parents and the seating
& mobility team is whether to pursue a manual or a power chair that the
child will operate himself, or a stroller-type of chair that will be pushed
by a caregiver.
Parents who are still working to understand a disability diagnosis may find it difficult to accept a wheelchair recommendation or may fear that using
a wheelchair could discourage the child from learning to walk. In other instances,
the family home, environment or lifestyle may preclude independent mobility
under the present circumstances.
On the other hand, multiple studies have indicated there are many social,
emotional and cognitive benefits to providing independent mobility at as early
an age as possible — even if the child does eventually walk independently
(see sidebar). Some studies have shown that as with language acquisition, there
is an optimum “window” for a child to learn to move independently,
and that window corresponds with the age that infants naturally begin to crawl,
stand and walk. Research seems to indicate that giving young children with disabilities
the same opportunity to explore can have a powerful effect later in life.
Building in Growability
Whether the child will be self-propelling, independently driving or using
a caregiver-operated mobility device, building growth potential into the seating
& mobility system is imperative. That generally means being able to accommodate
increased seat widths and depths, which can also lead to adjusting the location
of the seat on the base, changing seat-to-floor heights and needing a longer
frame as well.
While many seating & wheelchair manufacturers offer “growth kits”
— with some offering the first one free of charge — it’s
also important that those growth kits or other parts needed to grow the systems
are readily available when you need them. Therefore, it’s wise to work
with vendors who can deliver the parts or kits in a timely manner…since
growing kids wait for no one!
Once you’ve made the seating or mobility system growable, make sure
the entire team — parents, clinicians, techs and other provider staff
working with the family — understand all the adjustments that are possible
and how to implement them. After all, growth kits are at their best when they’re
fully used.
The Importance of Adjustability
In pediatric seating & mobility, adjustability is key. For instance, with
young and/or small clients who will be self-propelling, consider wheelchairs
capable of switching between standard and reverse configurations. Your littlest
self-propellers can start out with the drive wheels (i.e., the rear wheels)
moved to the front, where the wheels and pushrims can be more easily reached,
grasped and pushed. Once the child grows taller, the drive wheels can be moved
to the standard rear position for conventional self-propelling.
Another area where adjustability could help: upholstery. If it’s a viable
option for your young client, adjustable-tension back upholstery could “grow”
the width of that initial wheelchair back without having to actually swap backs.
For families seeking growability and adjustability of function as well as
sizing, some pediatric seating & positioning systems are capable of detaching
and reattaching to manual or power bases as needed. That flexibility can be
helpful for transportation or if the child needs the seating system to function
in multiple environments. Some manufacturers also make seating & positioning
systems that can be swapped among different wheeled and nonwheeled activity
bases, such as those used for schoolroom use, feeding or grooming.
Working with children who have disabilities will always include some potential
element of surprise when it comes to anticipating growth. Depending on their
medical conditions, family histories and individual biology, some children will
grow taller but not much wider. Others will grow wider before they grow much
taller, and some children will grow both taller and wider. Creating optimal
seating & mobility systems, therefore, requires careful planning beforehand,
with all members of the team communicating effectively to understand the child’s
goals and to tackle growth-related challenges before they come up…as well
as along the way.
Early-Intervention Advocacy
- Families of Spinal Muscular Atrophy
fsma.org
Under FSMA Community, click on Daily Life, then Equipment, then Links to access
articles on the impact of power mobility on young children. - University of Delaware Early-Intervention Robotic Power Chair Research
udel.edu/research/media/babiesrobots.html