Pictured above Ashton is excited to finally be testing out his first power wheelchair. It is a Quantum Q6 Edge which was delivered May 2015. We really were not given many choices or options. It basically came down to he could have this basic wheelchair covered by our insurances or go without which was not an option for him at 8 years old. Ashton was given the opportunity to pick the colors he wanted. He chose all black except for the bright blue wheels. I had to choose between Ashton having either tilt or recline added as a separate controlled option since he was going to be limited to only one of these necessary functions.
With tilt your entire seated body remains in exactly the same position while the chair tilts back to offer a bit of pressure relief. Not so good if you just want to put your legs out to stretch which Ashton frequently did on a chair or your lap when seated beside you or need relief from lower extremity swelling which Ashton also had. It also is not at all helpful for clothing changes like recline is when you need to be dressed from the waist down while in your wheelchair which was a necessity at times even when he was still considered ambulatory.
From the standpoint of time the process was the pretty standard six months from evaluation to delivery. I thought I was very prepared for the evaluation appointment with both Ashton’s Physical Therapist (PT) and an Assistive Technology Professional (ATP). I had documentation regarding his diagnosis of Duchenne and why he needed certain features that if could not be completely justified to insurance at this point in time needed to be able to be easily added to this wheelchair which was supposed to last him for the next five years when it could be justified. Ideally, he should have had a wheelchair with built in stander offered by Permobil. Any features which were suggested by PT or by myself and backed up by PT that would be beneficial for Ashton to have to assist with proper posture, support and comfort both now and as he progressively declined as expected really were not given real consideration.
When Ashton sat in it for final adjustments when it was delivered my first thought was it is too small as in the back support was much too short for him and that the head rest appeared to be more of a neck support. I questioned the ATP who was one of the two home medical employees that delivered it and was told that it was not too short at all but rather just the way it should be.
A month later at his then yearly instead of now bi annual multi-disiplinary full day neuromuscular clinic appointments the rehab team was quick to notice that this wheelchair was not the proper size for Ashton and were extremely surprised that a vendor thought it was fine and sold ill fitted complex rehab equipment to growing children. I was advised to go back and have it resized.
Pictured to the right you can see that the back rest only came under this shoulder blades. Not only is a power wheelchair Ashton’s legs for independently getting around it also is his seat to be safely and securely transported in vehicles. This reminded me of the low back bench seats without head support deemed unsafe in motor vehicles several decades ago.
Throughout this process I was told over and over how easy it is to grow wheelchairs for children as they grow now compared to years past. Yet, somehow, Ashton’s new wheelchair did not allow for any growth height wise at all and was already configured at capacity. The home medical team we were working with did remove the four bolts which securely hold the metal seat back to the wheelchair frame to move it up one extra notch meaning it could now only be secured with two of these bolts.
Did this compromise his safety at all? I do now know. Would a mechanic purposely only attach a tire with half of the lug nuts and send you on your way? I certainly hope not! Just pointing out that
Assistive Technology Professional, also known as an ATP is certified by RESNA, also known as Rehabilitation Engineering and Assistive Technology Society of North America and are certified as being able to analyze the needs of consumers with disabilities.
Below you see Ashton after this sizing hack was done. Yes, the top of the back is a more appropriate height though the head support appears to be lacking in the event of a motor vehicle accident or when using the tilt feature to try and relieve pressure from sitting. The back cushion also was now much shorter than the back leaving a large gap without a cushion for his lower back. I was told this power wheelchair needed to last for 5 years and that insurance would never cover parts to grow a new wheelchair that was just delivered. Ashton had a difficult time keeping his feet properly positioned on the foot plates which did not seem to be wide enough for him. The calf pads actually are below his calves instead of under them for proper support and comfort when using tilt.