One year later (May 2016), there are many nicks in all four of the caster wheels, one calf support pad had broken off, there appears to be some fraying in the webbing where the seat belts are attached to the frame, the grip on the separate control lever for tilt had worn off and Ashton was saying he is having a difficult time with the small grip on the joy stick of the main controller. I make an appointment to address these concerns and am told they are all rather trivial, do not require attention and that the wheelchair is only one year old.

Fast forward another year, now two years since delivery and the wheelchair is showing very obvious signs of wear and tear on both the seat and back cushions, both drive wheels and all four caster wheels. The cap that covers access the rear right caster kept coming off and had eventually gone missing.*

We had recently moved ninety minutes away and were able to get back to the home health vendor during July (2017) to see about starting the wheelchair growth and modification process. I am told that since our current insurance provides better medical equipment coverage and there has been significant change to Ashton’s size and condition that we should proceed with ordering a new wheelchair better suited for his needs. The thing is we were no longer living in their service area so we should just find a provider closer to home.

Ashton will be turning eleven in a several weeks, has grown quite bit and is no longer a little seventy-five pound eight year old boy. His physical condition had really deteriorated as well. He was putting on weight very quickly since no longer ambulatory. Not only was he no longer able to walk he could not tolerate standing even a few seconds to assist with transfers or getting dressed. Overall, the wheelchair was way too small, not comfortable for sitting all day and did not provide any necessary support for proper posture or holding his legs in a normal sitting position. He needed his feet crossed to keep them on the footplates so they did not drag on the floor or get run over by the front caster wheels. This puts more pressure on the hip joints, reduces blood circulation in lower extremities, encourages contractures and is not a comfortable position to be in all day.

That autumn the PT at Ashton’s new school wanted him to try out two pieces of equipment for use during his physical therapy time at school. One piece was a stander and I had told her was recommended for Duchenne patients and the other was kind of a large gait trainer piece of equipment as she was really hoping that Ashton could get up and moving again. She had asked that I came to assist as Ashton was very hesitant to try new equipment even though he was very motivated to work up to walking again. That was October 4, 2017. He could not tolerate being in the gait trainer type piece of equipment since it did not offer enough support. He had not stood in such a long time that he did not feel good at all in the stander trial but he was to use it to work up his endurance. Ashton managed to surprise us all with how quickly he was able to stand upright for nearly one hour per day.

During this appointment the ATP said that they could work on Ashton’s new wheelchair needs as well as other necessary equipment such as a hospital bed. I said that besides sizing his wheelchair needed to recline and have more comfortable cushions meant for someone sitting all day. The process would involve doing a cost to repair verses replace but was highly likely replace would be justifiable since he had changed so much during a relatively short period of time.

Ashton had gotten up to 175 pounds and not surprisingly I was having a very difficult time moving and transferring him with him no longer able to tolerate bearing any weight on his feet for pivot transfers. The ATP in charge of Ashton’s stander trial at school and was handling the growth and modification for his wheelchair was one the the three vendors to come out to give a quote for a ceiling lift system. While doing that he said that first the wheelchair would cover our deductible and then we could most likely get a hospital bed through prior to the end of the year.

April 20, 2018 still no wheelchair and Ashton has appointment with the Milwaukee Children’s Rehab Department and ATP from the same national company as part of a neuromuscular clinic appointment. All, the neurologist, physiatrist and ATP agree that he needs to be sitting in a more appropriate sized wheelchair with the recline feature and supports to hold his legs together. I specifically asked the ATP what size would the wheelchair would be grown to. I am told the next size which is an 18″ seat pan. Ashton had already outgrown an 18″ manual wheelchair some time ago so I asked “Are you sure that is the size that he actually needs?” Then finally out comes a tape measure which spans to 22″ inches measuring knee to knee and then pushing Ashton’s knees together says we can get him down to a 20 inch wheelchair.

Now the customer service representative with the durable medical company is telling me that his insurance coverage is approving for growth as well as wear and tear and the addition of more features such as recline and power leg elevators can be added later. I ask what size will this grow his wheelchair too. I am told to the next size of an 18″ seat pan. His wheelchair though delivered as a 14″ wide seat has a seat pan capable of a 12-16″ wide seat. I say but he was just measured as being able to be squeezed into 20″ as he had gained 100 pounds. I am told this amount of weight gain is not significant at all. I asked what cushion would be ordered and am told a new version of the exact same cushion. To that I say but he was ambulatory 50% of the time and is now is not ambulatory at all and requires a much more supportive and comfortable cushion for sitting all the time.

The customer service representative tells me “I know you think that your child needs these things and a new wheelchair but he does not.” She then very adamantly goes on to say “Nothing is wrong with his wheelchair. It is only two years old. Ashton will not even be considered to get a new wheelchair until it is at least five years old.”

I believed that I had no choice and that in Ashton’s best interest I had to decline growing his wheelchair to a 18″ seat size with a new 18″ basic cushion because he actually needed a 20″ seat width and a more appropriate complex cushion designed to be supportive and comfortable for someone who must sit all day because they can not walk, stand or bear any weight on their feet and is continually declining with progressive muscle deterioration. Not only would this be a waste of Katie Beckett Medicaid medical coverage it would lock him in to not being eligible to get the equipment he actually needed for years. Later, I found out that his wheelchair base did not even have the capability to be grown to a 20″ wheelchair in the first place. To this day I still wonder why the customer service representative was so insistent that it was impossible to outgrow a wheelchair in less than five years and if you did you must go without until then.

I still have not received any explanation as to why Ashton’s actual needs where not taken seriously and why there was refusal to submit documentation for what he actually needed to our insurance for consideration.

*This later results in a near catraophy which will be discussed in an upcoming post.