The Process of Getting a New Wheelchair
In this post, Jeff shares his experience of getting a new wheelchair. Pam then shares her thoughts on the process as the Occupational Therapist who worked with Jeff to get the new wheelchair to conform to him and his needs.
Part I: Jeff
Having been a power wheelchair user for over 35 years, I’ve gotten used to the process of transitioning from one chair to the next. As I am an active user and have good health insurance, I’ve been lucky to get a new chair every 5 years. This is ideal for me as breakdowns start to occur at the 5 year point and repair expenses start to grow.
Last summer I began the process of applying for funding for my new wheelchair. My first piece of advice is to work with a seating clinic at your local rehab centre, if you have one. If not, work with an Occupational Therapist who is familiar with prescribing wheelchairs. Not only will they do all the work in collecting quotations and submitting funding requests to insurance companies, government funders or non profits, they are also familiar with a variety of options for wheelchairs and will ensure that your health/independence/day to day functioning are maintained or improved during the process.
The process can take a long time, so you will need to be patient. For example, from initial assessment with the Occupational Therapist, to taking my wheelchair home, it took about a year. Insurance companies are very slow in approving requests and often deny these requests the first time around as they may not understand the needs and/or equipment. In my case, my insurance company paid 100%, but it took more than three rounds of appeals and phone calls from either me or my OT.
In selecting your chair, you need to go with what will work best for you. Ensure that your prescriber gives you several options and check out videos of the different models on vendor websites or YouTube. My viewpoint is, “If it ain’t broke, don’t fix it,” so my last three chairs have been upgraded versions of the same model.
Wheelchairs can do much more than just get you around, so ensure that when you are meeting with your OT that you also discuss seating, respiratory care/ventilation and adaptive technologies to improve independence. For example, my wheelchair has a new feature of Lateral Tilt to take the weight off of the side that I lean towards as a result of my scoliosis, in addition to tilt and recline to prevent pressure sores and help with range of motion. My wheelchair also has infrared controls to activate my TV, stereo, PVR, computer mouse and cell phone (and there are many other potential functions for environmental controls).
Just like building a house or buying a car, you will have lots of decisions to make. For example, color of the wheelchair, types of covering for your cushions/seating and different models of joystick (I use a micro joystick because of my limited strength and range of motion).
Once again, patience is the key to success. You will need to book several appointments with your seating team once your wheelchair has arrived. The wheelchair will need to be programmed for things like speed, sensitivity, etc based on your individual needs and abilities. Take the time to get it right as you will be best friends with your wheelchair for the foreseeable future. Also remember that you may not get it right the first time.
Part II: Pam
As Jeff said, working with an Occupational Therapist who is familiar with prescribing wheelchairs is important. Ideally, that OT should also be familiar with your diagnosis and what that may mean for your current daily functioning and possible progression. The OT is only one person on your team – he or she will also be working with a medical equipment vendor and possibly equipment manufacturer representatives to meet your needs.
Although the process may seem lengthy, I’ll break it down into common stages; Jeff went through those stages and he does a great job detailing his personal experience. Those stages are:
2) Equipment Trials
4) Set up and Fitting
5) Follow up
The time needed at different stages will increase as the complexity of your needs and equipment increases.
Evaluation/Assessment: At your initial appointment with your OT, you can expect that he or she will ask questions about your health, any upcoming surgeries, home accessibility, your school/work/volunteer roles, whether you’re independent with your activities of daily living (ADLs) or if you need assistance, vehicle type, caregiver needs, your goals, and funding sources, etc. Your OT will likely get you on a mat or bed to perform what he/she may call a “mat evaluation.” During this physical assessment, your OT will be noting muscle tone, joint limitations, and pain. He or she will also use a tape measure to take various body measurements. Be assured that all of this information is used to make a clinical judgement for the type of mobility and seating equipment that will help you meet your goals.
Equipment trials: Demo equipment will be arranged to allow you to try different options for your wheelchair and seating needs. Manual wheelchairs can be complex too, but when you enter the world of power mobility, manufacturers offer a range of power positioning, alternative drive controls, and environmental control units that change rapidly. Many power chairs now also offer the ability to interface with a range of commercial technologies from televisions to cell phones. In terms of seating products, your options range from off-the-shelf cushions and backs, to cushions and backs molded and custom built for you. Equipment trials and mock ups will narrow down your options and help you and your OT determine what will and won’t work in your home, vehicle, and community.
Funding/Ordering: Funding options vary and the process of funding wheelchairs and seating equipment could be its own blog post. Financial coverage may come from one of, or a combination of: private insurance, government assistance, non profit agencies, and personal funds. Your OT can assist with some of the paperwork required for your funding agencies. Once funding is in place, your vendor will order the equipment.
Set up and Fitting: Once your equipment is ordered and delivered, it will be checked for order accuracy and assembled for you by the vendor. Many times, the wheelchair can be ordered from one company, but the cushion, back support and any other positioning accessories may come from different companies. There is a lot of “behind-the-scenes” work to get your system looking the way you see it at your fitting appointment. During a fitting appointment, you’ll work with your OT and vendor to ensure that everything is adjusted to suit your needs. If the process has taken a long time from initial evaluation to delivery, your needs may have changed. Most wheelchairs and seating have a number of adjustments to fine-tune the products to your satisfaction so this appointment can take some time, but it’s worth the time spent to make it right for you.
Follow up: Finally, a note on follow up. This is an important part of any seating and mobility equipment prescription. Children grow and need their seating and mobility equipment adjusted on a regular basis. Even though adults aren’t growing, weight changes, surgeries, and disorder progression can change the way the wheelchair and seating work for you. Keeping up with regular maintenance is important to keep your equipment working the way it should.
Jeff Sparks is the National Director of Volunteer Engagement and Organizational Development with Muscular Dystrophy Canada. He is a quadriplegic and relies on 24 hour attendant care, which he manages himself, for all physical activities of daily living. Diagnosed at 10 months of age with Spinal Muscular Atrophy Type 2, he was not supposed to live past the age of 2 years old. 41 years later, there is no slowing him down.
Pam McCaskill works as an Occupational Therapist in the Adaptive Seating Service at the Stan Cassidy Centre, the neurorehabiliation centre in New Brunswick.