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Taking control of purchasing a wheelchair; tips for parents about mobility equipment.

The announcement by a doctor or therapist that your child needs a wheelchair or mobility aid can cause a number of feelings. Very few of them are pleasant. Perhaps a few tips on how to take control of the situation can help you avoid feeling helpless.

If we were to sit together and talk about your child's wheelchair, here's how the conversation might go - "A WHEELCHAIR IS SCARY__"

Yes. It is. I can remember how much my parents and I fought against it. If a wheelchair weren't used, wouldn't I have to learn to walk? 1, like many children, did not have the muscle ability to walk. Actually, the typical experience of therapists is that wheelchairs conserve and use energy productively. Kids almost always work harder at overall mobility if they have the freedom provided by a wheelchair. Playing, going to school, and participating in activities with peers is made possible by using a wheelchair - and the participation becomes the motivating factor.

Being told your child will have to use a wheelchair will probably never be even remotely considered as a joyous event. However, watching a child, who's been totally restricted to being carried or conveyed, master independent mobility in a lightweight or power wheelchair is a happy event. I have gotten misty-eyed watching young wheelchair jockeys take off to play with their friends. Or, as one mother said when her two-year-old son was introduced to power and decided to go visit relatives a mile away, "Now I have a toddler - a typical Terrible Two.' I love it!"

"HOW DO I CHOOSE A WHEELCHAIR?"

Even though the child's therapist is going to prescribe the chair, you have the right to make the final choice. You're going to be living with that chair and, if the coexistence between chair and family is going to be peaceful, you need to make some well-informed demands.

"WHERE DO WE START?"

If the chair is hard - or impossible for you to handle, it won't help your child much, will it? To avoid that possibility, take an inventory of when, where and how you will use the chair.

How do you transport your child? If it's in the family car, the wheelchair should go in the trunk or back seat. Manual chairs may fold from side-to-side and lie flat in the trunk, or the back only may fold down (and the chair may be too bulky to fit in the trunk), or the chair may not fold at all. Your choice with a non-folding chair may be to acquire a van or a second, lightweight, folding chair to transport your child.

Some wheelchairs fold, but their seating system may be so difficult to remove that the chair is, in effect, non-folding. Some stroller-type wheelchairs are sold as car transport chairs, because Mom or Dad can lift the front wheels into the foot space in the front of the car, collapse the rear wheels, and lift the child and chair onto the front seat, while securing the chair with the auto seat belts. While this may be best for your child, make sure that you actually can maneuver the child and chair into your specific car. It may not work with some compacts. It's also difficult with larger children.

How much does the chair weigh? The rule of thumb seems to be that the lighter weight the chair, the higher the price. Funding agencies frequently want to buy the least expensive wheelchair. There are some instances when it may be argued to the funding agency that a lighter weight wheelchair is necessary not only for the child's ability to propel it, but for the parents' ability to handle it.

Where do you live? This is a determining factor in the choice of a wheelchair for your child. I have seen a family be sold a 200-pound, non-folding power chair when they lived in a fourth-floor, walk-up apartment. It was stolen from the apartment lobby shortly after it was delivered, because the family had to leave it there overnight.

Think the situation through. Do you have a ramp or lift? Or, will Mom and Dad have to pull the wheelchair up steps? In addition to weight, the configuration of the chair is important. It's easier to pull a chair with 24" wheels up steps than to maneuver a chair with 8-10" wheels. Few people can pull a power chair up steps.

Consider the school bus. Check with your parents' group, school district, or child's therapist to determine if the chair you are choosing will work with tie-downs used by the school transit company. Most wheelchairs can be tied down, but it is a lot easier to make a change in the choice of chair than to try to move the school district to change.

Caring for the chair. Wheelchairs resemble puppies in that Mom or Dad takes care of them 98 percent of the time. Pneumatic tires give a nicer ride than solid tires, but they go flat. They go flat more often when subjected to playground surfaces, glass or sidewalks and when poked with sharp objects by playmates. Co compromising with flat-preventing inserts. The chair will be a little heavier and the ride a little bumpier, but Mom or Dad will be a lot less harassed.

Power chairs run on batteries. Fortunately, most power chairs come with gel batteries. Make sure yours does. Not only do you avoid accidental acid spills from eating your carpet, your school district probably doesn't allow transport of lead-acid batteries.

The batteries will need charging at least once a day. Ideally, when the child goes to bed, the chair gets charged. Make sure the charger that comes with the chair has instructions on charging gel batteries. Follow them - unless you can be content with buying new batteries every few months. Cheap batteries make wheelchairs do things you do not want to experience - like random turning, going in circles, and other unpleasant activities. Please, for everyone's sanity, don't buy a battery for the chair from the auto store. Buy them from your wheelchair dealer, or call the wheelchair manufacturer for a source.

"POWER SEEMS LIKE TROUBLE __"

Power chairs take more maintenance than manual chairs. However, studies that have been going on for the past eight or nine years seem to indicate that children learn faster and acquire social skills more quickly with the independent mobility offered by power.

Two other considerations to keep in mind when choosing between different models of power chairs are modular components and access to the batteries. "Modular components" means the seat is a separate unit from the base in four-wheel power chairs, making it possible for you to load the chair in the car trunk. With three-wheel power chairs or scooters, check to see how easily the components come apart and go back together when you're putting it in and out of the car.

You will often need to have access to those batteries. Make sure they are in a battery box mounted on a track which enables you to slide them out easily.

"WHAT ABOUT SPECIFIC FEATURES?"

When therapists prescribe a chair for a child, they frequently talk about size first. If your child will self-propel a manual chair, seat width will determine how well he or she can reach the wheels. Wheel placement forward or back on the adjustable axle position - may improve leverage for propelling the chair.

The therapist will consider back height an important feature. Usually, the back should be high enough to give the child full support, and sometimes the therapist will prescribe additional or separate head support. The therapist will also be concerned about foot and leg support. For older children, swing away footrests may be needed to assist in learning to transfer independently from the chair to toilet, bed, etc. For other children, fixed or one-piece foot supports may be best.

Ask your therapist why he or she is choosing specific components. You and your child will be able to use the chair more effectively if you know, for example, that keeping Johnny's feet in good position with foot straps helps him have better use of his upper body.

You will hear the term "this chair grows" followed by a range of seat dimensions. The theory behind this feature is that the chair can be enlarged as the child grows. Be sure to check with your dealer to determine how much it will cost to "grow the chair." Costs can range from nothing - if you can make adjustments at home - to several hundred dollars if new frame components and upholstery are required.

Talk to your child's therapist and doctor. Is your child expected to grow significantly in the next five years? Funding agencies tend to replace wheelchairs at five-year intervals. Maybe the money spent on growing" features would be better spent on other features.

"WHAT IS THE DEALER ROLE?"

A good dealer can save you and your child many headaches. They are not always easy to find. It helps to:

* Talk to the therapists at your child's school or clinic. They know which dealers spend time with parents and give good, fair-priced service.

* Compare notes with other parents whose children use a wheelchair. Have they been treated fairly?

* Call the manufacturer of the wheelchair that you and your child's team have chosen. They will give you the name of the dealer who sells the most products and gives the manufacturer the least trouble. This is the dealer you want - one who knows what he is doing.

* Unless you live in the middle of nowhere, insist on a dealer located close enough for you to visit the store or a dealer with routine representation in your area. You do not need the added hassle of waiting for service forever, waiting for parts to be shipped in from somewhere, and the other things that happen if you let the funding agency buy from a dealer that has a nice, low price - but is located 500 miles from you, stocks no parts, and does not service what he sells.

"HOW DO WE DECIDE?"

Therapists and others who work with youngsters are realizing more that parents are an important part of the team necessary to successfully acquire the wheelchair. The team members and their typical duties are:

* Child: makes the final decision on color and decorations on the chair - always! If the child is old enough, he or she should be talking with the therapists and dealer about what works best for him.

* Parents: make the final decision on what will work with their life style - consider issues such as weight, portability, maintenance requirements, etc.

Professional members of the team may include:

* Physical Therapist: makes decisions about how the chair accommodates the child's physical needs, how to optimize self-propulsion, and how it moves the child toward goals of independence.

* Occupational Therapist: sometimes make the same decisions as the physical therapist in terms of how the chair works with the child's strengths. May also make sure the child is positioned properly.

* Teacher: frequently adds valuable input about how the chair suits the child's school environment, and whether it is usable with equipment such as desks, etc'

* Social or Case Worker: responsible for exploring funding alternatives and obtaining funding.

* Dealer: the equipment specialist whose job it is to translate your child's needs into equipment.

The team concept is ideal. In your area, you may have to encourage the team approach. The reward is worth the effort. Choosing the proper wheelchair the first time can prevent a lot of dissatisfaction. In fact, the right choice can avoid the possibility of your child having to use a wheelchair that is not correct for his/ her needs until he or she is eligible for funding again.

Your investment in learning about wheelchairs will pay you nice dividends.

Jan Little is the director of the Assistive Technology Center Project for the United Cerebral Palsy Association in Chicago. She holds an M.S. in Science from the University of illinois.
COPYRIGHT 1991 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1991 Gale, Cengage Learning. All rights reserved.

Article Details
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Title Annotation:Annual Mobility Guide for Parents of Children and Adolescents
Author:Little, Jan
Publication:The Exceptional Parent
Article Type:buyers guide
Date:Mar 1, 1991
Words:1998
Previous Article:Heather's story; the long road for a family in search of a diagnosis.
Next Article:Positioning for function: wheelchairs and other assistive technologies.
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