Clinically Speaking

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 more challenging.

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 involved.

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 the know-how.

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.