Get Expert Advice Before Buying a Wheelchair

by Barbara Twardowski on July 1, 2011 - 7:14pm

QUEST Vol. 18, No. 3

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I have buyer’s remorse.
Like most people, my closet contains a few items I never should have bought.
A paper-thin broom skirt that was shredded by my wheelchair tires the first time I wore it. A bright red handbag that lacks a shoulder strap, forcing me to choose between clutching the accessory or holding onto my wheelchair every time I exit the ramp of my van.
Until now, the majority of my retail mistakes were minor infractions — a lipstick in the wrong shade or an uneaten frozen dinner entree.
My newest purchase can’t be hidden in the back of a closet or in the freezer. It’s with me every waking moment.
I regret rushing to buy my new power wheelchair.
No, it definitely was not an impulse purchase. After five years of daily use, my old chair was worn down and falling apart. Coils in the seat were poking me, one wheel didn’t turn properly, and the chair was no longer dependable. My doctor said there were better choices, and I should get a new power wheelchair.
Naturally, I contacted the vendor who sold and serviced my older chair. He spent time assessing my needs. We talked about a chair that would work with the EZ Lock wheelchair restraint system in my car, which allows me to be the driver or a passenger in the vehicle. He focused on the swelling in my legs and how I reposition my body throughout the day. I was concerned about the size of the chair, as my master bathroom doesn’t have much turning space.
What I regret is not being more informed before I bought the chair. I wish I had taken the time to research the choices, looked at the features available on the company’s website and talked to other wheelchair owners.
I wish I had test driven several models — especially a standing chair. There might be better ways to lift my legs and elevate them, instead of tilting back, which I don’t like. (It’s like sitting in a dentist chair; you can’t do anything in that position.) Perhaps I should have consulted more experts and gotten a second opinion.
Buying a power chair is similar to buying a new car. The manufacturers have fancy brochures and offer a variety of optional accessories. Some of the power chairs cost as much as, or even more than, a car. If you wait to buy a new car until yours isn’t running, there’s an urgency to the process. If your wheelchair is no longer functioning, you’ll also have to hurry and get another one.
As your physical needs change and the age of your wheelchair increases, it’s a wise idea to discuss your situation with your health care team so you are an informed consumer. For those registered with MDA, an MDA clinic is a good place to go for consultations and referrals.
The bottom line is: When the time comes to replace an old wheelchair, look for experts who have been trained to guide you through the options.

Some occupational and physical therapists specialize in wheelchair fitting and seating; your MDA clinic physician can help you locate one in your area.

ATP (assistive technology professional)

The Rehabilitation Engineering and Assistive Technology Society of North America, or RESNA, is a nonprofit professional society that certifies assistive technology professionals (ATPs). RESNA members serve people with disabilities who are seeking technology to maximize functionality in the home, school, workplace and community.
“Assistive technology” encompasses such things as manual and power wheelchairs, communication devices, orthotics, hearing aids, reading machines, portable ramps, prosthetics and more. An assistive technology professional is trained to analyze the needs of individuals with disabilities, assist in selecting appropriate equipment and educate the consumer on properly using the specific equipment.
ATPs come from a variety of fields. They include: physical therapists, occupational therapists, speech-language pathologists, engineers, educators, rehab counselors, suppliers, computer access specialists, technicians and more.
A certified ATP meets an internationally accepted standard of knowledge in assistive technology. The certification process includes work/education eligibility, passing a 200-item exam and an ongoing commitment to practice at the highest ethical standard.
If you’re wondering how a speech-language pathologist can be an expert in wheelchair seating — she probably is not. ATP certification is designed to give professionals a broad base of knowledge and make them aware of services and choices for clients with complex rehab needs, including when to make a referral.
“One prescription impacts another device,” says Anjali Weber, director of ATP certification for RESNA. “The joystick that controls a wheelchair — if supplied with the right electronics — can be used to turn off the lights in your home or operate your computer.”
ATPs take a “holistic approach” to determining client needs, says Weber. “When you buy a new wheelchair, how will you transport it? How will it work in your home?” No one is an expert in everything, and ATPs understand you may need a referral to someone with a different specialization.

SMS (seating and mobility specialist)

RESNA introduced a new certification in March 2010: seating and mobility specialist or SMS. The speciality credential, which builds upon the baseline ATP certification, is meant for those elite rehabilitation professionals with advanced knowledge and experience in seating and mobility.
SMS-certified therapists work with complex rehabilitation clients, comprehend disease progression, are proficient with custom seating, and are knowledgeable about wheeled mobility technology and electronics. Before individuals can take the 165-question exam, they must have 1,000 hours of in-person consumer experience in seating and mobility, and be an ATP in good standing.

Consumer beware

Unfortunately, there are people who sell medical equipment who have limited knowledge or are simply unethical. If they unscrupulously sell you a chair that ultimately doesn’t meet your needs, you may have no recourse but to keep it. But if you use an ATP and have a problem, RESNA has a process to review violations of their standards.
Amy Morgan, a physical therapist and ATP who works for Permobil, teaches advanced classes for clinicians and suppliers. Class topics range from “Wheelchair Standers: Stand for Function!” to “Neurological Function and Dysfunction — Understanding the Implications for Seating and Mobility.”
When shopping for a wheelchair, Morgan says, it’s important for people with neuromuscular diseases to see both a supplier and a clinician (therapist). Always work with a physical or occupational therapist, and make sure he or she is a practicing clinician and not someone who works on the supply (wheelchair sales) side, Morgan advises. Look for professionals who are ATP certified.
Consider everything you want the chair to do. For example: I would like to reach into a cabinet from my chair. I’d like a joystick that works better with my tremor or has a more ergonomic design for my hand. I’d like to kick my feet up when my legs swell and hurt. What are the options for that?
Involve as many people in the evaluation as is reasonable. “The more brains the better,” says Morgan.
Be mindful of the literature that describes a wheelchair. Morgan once worked with a mother who was comparing two different brands of chairs. One said the turning radius was 40 inches and the other said 22 inches. Morgan knew that the two chairs were nearly identical in the way they could turn. Puzzled, she did a bit of investigating by calling the manufacturers and asking more questions. She discovered one manufacturer was describing the space required to turn while the other was describing the full turning radius.
“The selection of a wheelchair is a collaboration,” says Morgan, who urges consumers to take wheelchairs home for a test drive. “You have to be an advocate for yourself.” She recommends joining the Users First Alliance, an education and advocacy group for wheelchair users, clinicians and suppliers.
“People who have neuromuscular diseases need to work with professionals who understand the progression of their disease,” says RESNA’s Anjali Weber. She notes there’s a big difference between durable medical equipment like a walker and the complex technology required by people with increasing muscle weakness and paralysis.
“If you work with someone who is certified, you should receive better service from beginning to end,” says Weber.
To find an assistive technology professional in your area, see the resource list How to find an ATP in InfoQuest.The Best Online Wheelchair Store is http://www.frontlinemobility.comhttp://www.frontlinemobility.com
Barbara and Jim Twardowski (RN, CMSRN) are a husband-and-wife freelance-writing team and frequent Quest contributors. They live in Mandeville, La. Barbara has Charcot-Marie-Tooth disease.