Life on Wheels (49 page)

Hobbies and activities for which your chair will be a consideration

Relevant information about any “homes away from home.” If you like to hang out at your best friend’s place, you want to make sure you can get around independently there, too.

The importance of the appearance of your chair to you. Do you see yourself in something sporty? Eye-catching? Or do you prefer to be as inconspicuous as possible?

Your usual level of physical activity, including exercise

One rider describes his experience with the selection process:

Despite the variety of wheelchairs on the market and the many options available, you may not be able to find every feature and detail you would ideally like in one chair. As with other purchases, such as a car or home, some compromises and tradeoffs are usually necessary. As you work your way through the selection process, try to think about the big picture and how you will use your chair over time. Establish priorities, learn from the experience of others, and value the advice of experts, but place the highest priority on getting what will best meet your needs for mobility, safety, and comfort.

For example, it is common for people to be drawn to the appearance of a chair, but it is dangerous to be overly influenced by the look of a chair, to the possible exclusion of other, more important, functional characteristics. That really cool-looking rigid frame chair might not fit into the trunk of your family car. Doe Cayting of Wheelchairs of Berkeley, California, has seen people become too attached to the appearance of the chair, in lieu of other features more important to their mobility:

Fortunately, there are lots of good-looking chairs that fit many needs. Compared to the institutional-style chair that everyone had to use until the 1980s, whatever you choose will be better looking and more to your liking than in “the old days.”

Not only can choosing a wheelchair be difficult emotionally, it can be confusing and exasperating. The professionals who are advising you will talk with you about many issues and options. They will ask you a lot of questions. They may give you catalogs for a variety of chairs that have all kinds of features to choose from. It will likely seem overwhelming. You might find yourself thinking, “Just sell me a wheelchair!” This is a process that takes time, and it is extremely important not to rush it. Too many people have discovered just how huge a mistake that is.

The best advice is to relax and take heart. First of all, your therapist, the supplier, and the facts of your condition and lifestyle will very quickly narrow the choices down to a much more manageable number. If you have taken time to learn about various products, have a good picture of your needs, and have studied the information in this chapter, the entire process will be much less stressful and much more successful. Find the right people to work with, and they will help you identify the chair that will provide you the highest possible quality of life you choose to pursue in the context of your disability.

The prescription for your chair will be written by a physician. Ideally she will be a rehabilitation specialist (physiatrist) and refer you to an occupational or physical therapist who will help ensure that you get the right chair. Your lead physician is unlikely to have detailed knowledge about wheelchair specifics but will establish the broad category of what you need and then rely on a specialist to get down to the details in the collaborative process described above. Jody Greenhalgh, OTR, is an occupational therapist with UCSF/Stanford Rehabilitation Services in Stanford, California. She finds that some people end up with the wrong chair because they relied on their primary physician to specify it, and then find themselves in trouble:

A therapist’s knowledge of anatomy and biodynamics is inestimably valuable. Your therapist will study your exact disability and do muscle and range testing. He will determine whether you have the physical ability to push a manual chair or whether you should drive a power chair. He will identify how to establish a stable posture that will allow you access to your optimal strength as you push, or study your ability to operate the various types of power chair controls. He will test your eye-hand coordination and cognitive skills. He will measure your weight and height, your knee-tofootrest distance, seat depth, back height, and all of the other specific dimensions needed to configure your highly customized set of wheels.

Your therapist will likely know the best wheelchair dealers to work with, but, if you have to find one on your own, the time you spend locating one with knowledge and experience will be well worth it. You will not be purchasing your chair from a general medical supply store, one that sells all sorts of medical equipment. Such a business will not have the kind of expertise you need or be established dealers of the kind of high-end equipment you need as a full-time user. You will want to find a dealer who specializes in “prescription” wheelchairs.

A knowledgeable salesperson of durable medical equipment can make a tremendous difference in ensuring that you get the right wheels. You’ll want someone who has a lot of experience seeing many people with different needs and who has specialized in rehab equipment. A competent salesperson often has absorbed more insight from other users about what worked and what didn’t than the therapist has.

Bob Hall is the former head of New Halls Wheels, a custom chair maker no longer in business, and himself a chair rider. He cautions against relying on a dealer who may not be as knowledgeable as one would hope:

If possible, find a salesperson who has experience with insurance and funding. He can help you strike the sometimes delicate balance between the ideal chair you want—but for which the insurer simply won’t pay—and identifying appropriate equipment that will be approved.

You may not always have a choice about the dealer with whom you will work. Your funding source might require that you use a particular supplier with whom they have a contract, and such a supplier might not be well informed about the most appropriate product for you. If you believe you need additional consultation in order to get the best chair, assert yourself with your insurance carrier or agency so that you can work with a local source that is best qualified to consult with you. Once the chair is delivered, it might fall to the therapist to adjust the chair and teach you about its operation and maintenance.

You should be given the chance to try out a close configuration of the chair you will eventually purchase. The supplier should have chairs on hand that can be adjusted fairly closely to your needs and may even allow you to take one out and live with it for a few days. Some manufacturers will actually ship a chair to the supplier specifically for you to evaluate. Larger rehabilitation hospitals have a substantial supply of chairs and accessories to fit you into something quite close to what you will purchase. Some of them are even in the wheelchair sales business—out of necessity for lack of a competent dealer in their vicinity.

Wheelchairs are expensive. A lightweight, modern manual wheelchair can cost as much as $2,000 or more. A fully equipped power chair can reach prices in the range of $30,000, though they generally will cost closer to $10,000.

Because you need the best chair and it costs a lot, you have little choice but to rely on outside payers. Your chair might be paid for by a small or large insurance company, under a Workers’ Compensation plan, a health maintenance organization or planned provider organization, a state Vocational Rehabilitation agency, the federal Veterans Administration, or a government plan like Medicare or Medicaid.

Whether private or public, funders are all highly budget conscious and are generally trying to limit their costs. In the current political environment of attempting to control healthcare costs, it is becoming increasingly difficult to get approval for your ideal wheels, though this depends on exactly who is paying. Since the funders have a built-in conflict of interest between your health and independence—which they might sincerely care about— and managing their dollars (and profits) carefully, you will need to be your own best advocate.

Be serious about advocating for yourself when configuring and purchasing your wheelchair. Read your policies and contracts. Don’t be afraid to ask questions or to make phone calls to find out what you need to know. Insurance companies and government agencies are bound under certain laws to give you information.

Don’t assume your insurance policy won’t cover something you need or even that a refusal of coverage is the final word. It’s always worth the effort to check your policy or discuss the situation with your insurance contact person. Generally, justifiable medical need must be established, even for a given feature or option on the chair.

You might even have coverage that you’re not aware of, as this longtime wheeler discovered: