1.4. Surviving the wheelchair clinic
A large number of questions we receive are from people who are in the process of looking for a new wheelchair. Many of these people are doing their homework by gathering information, talking to other wheelchair users and providers and indulging in a fair amount of investigation prior to making a decision.
Still, there is more to it than looking at pretty pictures of wheelchairs or reading slick manufacturers ads. There is the process itself, the evaluation process. This is where the people in the know and you get together and start making some decisions on the type of ride you will have to live with.
If you are paying for your own wheelchair, you certainly have the option of going it solo. If your wheels are being funded by one of the customary sources such as Medicare/Medicaid, insurers, or the Department of Veterans Affairs, you will likely need to undergo an evaluation. This is where you will need all the help you can get. Being in the right place with the right people makes all the difference in this process.
First, locate a facility or clinic that can handle your needs. Turn your radar on and scan your area for a clinic or evaluator who has experience with your specific disability. If you have to travel to a clinic or center that specializes in your disability, do it. The time you spend in traveling is nothing compared to the time you will spend trying to make things right later on.
When you locate a clinic, call and ask some questions. Start by asking how many evaluations they have done on individuals with your disability. Hearing things like "You're my first" or "I've never done this before" is not what you want to hear. Ask around and talk to other wheelers who have been through the process.
It is not enough to put yourself in the hands of people who know wheelchairs. You need to find those who also know something about and understand your specific disability. Find the most experienced and knowledgeable people you can to help you with your evaluation.
If you're headed for a vendor's facility or clinic for your evaluation, put the eyeball out when you get there. Check out what other people are riding, especially the new chairs. Spotting the new chairs isn't tough. They're shiny, don't have dings or bent leg rests and have nice new looking upholstery or covers. If there is a line of new chairs sitting there waiting for delivery to users, check them out also.
If the chairs you are seeing are all alike, same manufacturer or same model, then you don't belong there. You have taken a wrong turn and have stumbled into "Cozycorners," a place where the staff has become very comfortable with one brand or model of wheelchair, or worse, "Vendorville," a place where a particular vendor is dominating the selection of wheelchairs. Either way, you need to be on the first wheelchair heading out of town. Limiting the arsenal and the choices also serves to limit the opportunity for good results.
At some point you will be face to face with the clinic team or wheelchair specialist. This is your one shot to be heard, so make sure you are. Don't be shy; get those questions and concerns out there. You should be a player in this process.
The clinic staff is there to help guide you to a successful outcome, so give them the information that they will need to get you there. Remember, opinions are just that, a conclusion reached by someone based on information that may be assumed or real, facts that may be accurate or bogus, mixed in with some mindsets and prejudices. Politely offer accurate information on your situation, correct people when they are wrong or make assumptions, and steer them back on track when they stray.
At the end of the evaluation, be sure to ask that a copy of the clinic notes be mailed or emailed to you. These represent the official findings of the clinic and they can make or break you. You may have to go to a particular person or special office to request these, and will probably be charged a couple of bucks for making the facility do some extra work. It's worth the extra effort and cost to get a look at them. Expect to wait a number of days or weeks before you receive them, that's normal. If you notice any surprises in the notes, call the clinic and discuss it with them.
Your new wheelchair will be as good as the company you keep in the clinic. You're likely to run into all levels of experience and knowledge there. Hopefully, you will come before a team comprised of people with varied expertise that may include therapists, vendors (providers), and even an occasional doctor. You may meet a rookie in there; don't let that bother you. Everyone started as a rookie. As long as the rookie is part of a team, you're okay. They have lots of energy and will probably have as many questions as you do; they keep the pros from turning rigid and opinionated. Anyway, the old pros like to strut their skills off in front of the rookies; that'll work for you.
Go with the flow. You may be asked to do certain things or go to certain places or clinics, maybe more than once on different days. You may be asked similar questions several times or be giving out information that you know is somewhere on some form that you handed in. Just do it! It's a good sign when team members confirm and reconfirm information. Don't jeopardize the evaluation by being in a rush to get a new chair. The evaluation, especially if your situation is intricate or involved, may take more than one visit. In order to help you, the clinic team may need a great amount of information about you and your condition.
You are doing yourself a tremendous service by jumping through the hoops.
Whenever necessary let the clinic team do their homework. There may be times when a clinic member may need to seek technical or clinical advice, look up things, call manufacturers, or confer with another staff member. Do not take this as a sign of rampant ignorance. It is not. There are hundreds of wheelchairs out there and thousands of accessories and aftermarket products. No one knows them all. Take it as a good sign when someone goes searching for information or guidance. They are doing it on your behalf.
There should be some logic to the choices. When certain chairs or chair components are recommended, there should be a good reason why that choice was made. For example, you would like a set of those small roller-blade casters on your new chair. I don't blame you. They're pretty cool looking, and some of them even flash colors when they roll. The clinic decides that you need a more conventional or a larger caster. At this point make it your business to ask why that decision was made. They should be able to give you a logical answer, something like this: "It appears that you live on the moon where there is a great deal of rough terrain. The small casters will get caught on the rough areas making it difficult for you to push the chair and possibly causing the wheelchair to tip over resulting in you falling from the wheelchair onto the jagged basalt rock surface and sustaining serious injuries. The larger casters would make negotiating rough terrain easier and safer." Sounds reasonable, doesn't it? You don't have to be an expert or old hand at it to recognize "reasonable".
You should be able to get an explanation for every option and every configuration decided on. Each feature and component selection should be discussed with you for your input. By the time it's all over, you should have a very clear picture of the chair in your mind.
Get prepped for it. Make sure that you go into this with lots of information at hand, in head, on list, or in mobil device. Information about your disability, your functional ability, your likes, dislikes and experiences with different wheelchairs, your home/community/work environment, recreational pursuits, your means of transportation, caregiver concerns, and questions about chairs and components you have researched on your own. Information that will give the clinic insights into who you are and what you do. It is very important that you are treated as a unique individual with unique needs.
Be sure to share the anxiety and bring people who know and understand your daily habits and wheelchair needs along to the clinic. There is no such thing as "they are not allowed in". If you want them in they are in. The concerns of caregivers, a spouse, family members or close friends may not be those that are at the top of your list. Often their concerns are related to weight of the wheelchair, portability, maintenance, ease of pushing chair and user, and compatibility with other home equipment. Nonetheless, they should be fielded in the clinic.
Trial the wheelchair. This one can be tough. If your needs are involved and require things like an odd sized chair, specialty controls, an array of positioning devices or custom components, then trialing a precisely configured wheelchair may not be possible. Locating a "demo" wheelchair with all the right customization is hardly ever possible. Neither clinics or suppliers keep that many differently configured wheelchairs around. It's just not possible. They may be able to find something that is close so regrettably that may have to do. The more common assembly line models should not be a problem.
If you are lucky enough to be supplied with a trial wheelchair then really trial it. Talk the clinic or supplier into letting you use it for a few days in your real world and not just trialing it once around the corridor or showroom. Pound the hell out of it and make sure to cruise all of your regular haunts. Use it in conjunction with your other home equipment to determine compatibility. Run it through all your doorways and living areas. Cruise your regular community paths and make your regular stops. Remember what worked for you and what didn't so that you can discuss the trial later on and adjust for findings.
Set high standards for the outcome but temper it with realities as they arise.
Relax, cooperate, be firm when you have to be, take control as needed, have patience, cross your fingers and slip a rabbit's foot into your pocket, and things should work out. Now that's one heck of a disclaimer, isn't it?
VP of Assistive Technology
United Spinal Association