In the world of wheels and insurance woes, my journey for mobility has been a saga of frustration and resilience. December of 2022, my trusted powerchair of over eight years broke down, initiating a process that unveiled the harrowing reality of relying on wheels for independence.
Photos of my handy mobility aide, no back pain and minimal spinal curvature
Enter the mobility company that we will refer to as NM. The mobility company that held the key to my newfound freedom. I embarked on the path to a custom powerchair, measured and fitted in January 2023, with the understanding of delivery in March. Little did I know, a bureaucratic storm was about to hit (mind you, NM told me directly that I would have the electric wheelchair by March).
Wheelchairs need to be custom-fitted for individuals who rely on this aide. Each person has different preferences and needs for comfort. Individuals who use wheelchairs must have an accurately fitted chair so they are not causing lasting discomfort and pain to their body.
Three months passed, and I heard nothing from NM until I received a denial letter from the insurance company that we will call BC. The insurance company’s denial echoed disdainfully, deeming the height extension feature unnecessary. This simple modification, allowing me to converse eye to eye with others, was dismissed as a luxury rather than a fundamental aspect of my daily life. Appeals were disregarded, leaving me stranded with a deteriorating spine and escalating distress.
Photos using the portable powerchair that had limited back support. Continued to attend events unbeknownst of the damage to my spine.
March came and went, exacerbating my plight. Forced to continue to resort to an older, unsupportive portable powerchair, I was thrust into a cycle of pain and desperation. The insurance company’s incompetence and NM's silence pushed me to the brink.
I wrote and sent BC a letter of appeal explaining multiple reasons why the extension feature of the electric chair was necessary and that I was in dire need of the custom-fitted chair, and I was denied. When I received the first denial letter, as there were more, the letter insinuated that one doctor who had never met or spoken to me was the sole decision maker in the denial of the chair.
April approaches, and I have no comfortable chair and a conference to attend in a few short weeks. This conference was critical to me and my professional career as an author. Attending the conference would mean sitting in the chair for many hours and speaking with attendees ready to network and discuss books. As a member of IBPA, I was looking forward to meeting other authors and knew that if I was going to spend my time and money on attending, then I needed to be sitting comfortably in order to enjoy it.
After numerous web searches and phone calls, it seemed like finding an electronic wheelchair to rent would be impossible. I was hopeful because I live relatively close to Disneyland, and there are many rental chair locations nearby. Still, after checking out a few places, they only had electric scooters and no electric wheelchairs. Unfortunately, a scooter was not feasible due to the lack of strength in my upper extremities, but alas, when I decided to call one more shop, I spoke to a very kind gentleman who informed me that he had a chair available for me. I immediately headed to the rental shop and was able to rent the chair I needed for a 4-day venture.
My birthday was 2-days before the conference, so my sister and I were able to enjoy a few beautiful days on Coronado Island, and I was so relieved that I was not dealing with the discomfort of sitting in an unsupported chair. My birthday and the publishing conference were a wonderful trip and experience in San Diego. The extra money I had to spend was definitely not ideal, but it was worth it at the end of the day. The fact that it was so difficult to find a chair to rent was exhausting, but I am very grateful for the generosity of the rental company not charging me an arm and leg for the 6-day rental.
In San Diego at the publishing conference, using the rental powerchair (Birthday celebration)
So now we are in June. After making this difficult decision, I felt that I had no choice now but to dig into my own pocket, shelling out over $3000 for a chair that met my immediate needs. The callous bureaucracy had failed me, compelling a self-made solution to prevent further deterioration of my well-being. The cost was not just financial; it was a toll on my physical and mental health.
Between the time I ordered the chair in January and now at the end of June, NM proved not only are they incompetent, but they are also callous. During this time, my mom was in contact with NM effortlessly, attempting to expedite the process and communicating between the mobility company and insurance company, only to find out that NM was not submitting the necessary paperwork. They were not attempting to contact my doctor for the approvals needed. NM did not once contact me directly during this time and only spoke to my mother as she is the insurance holder, so I decided to call and ask for the progress myself. I was beyond frustrated and livid at this point because I was told that I would have the chair by March, and my multiple appeals were denied.
Using the powerchair that I purchased on my own. Spending over $3000, but unfortunately, the damage was already done. A bit more comfortable but in constant pain.
Just as I thought relief was in sight, NM's revelation in August knocked the wind out of me. The insurance had finally covered the chair, but an expired prescription, because this process started in December of 2022, meant I had to begin the process anew. The déjà vu of frustration was suffocating. The prescription for the chair from my doctor had expired.
This journey is more than a bureaucratic nightmare; it’s a plea for understanding and acknowledgment. The correct equipment isn’t a luxury; it’s the lifeline for someone who relies on a wheelchair. It’s the difference between independence and despair, comfort and agony.
The bureaucratic hurdles, insurance denials, and corporate oversights are not just inconveniences—they are barriers to the basic human right of mobility. My story is not unique, and it’s time for a collective voice to amplify the frustrations of those who navigate the convoluted landscape of insurance and mobility, reminding the world that a wheelchair is not just a device but a gateway to a life of dignity and autonomy.
When I called NM, I repeatedly received the runaround of blame. When speaking to these representatives, all they did was either tell me, "I don't know," or try to blame another representative for not updating my case. By August, I was calling frequently and was finally told that I would have the chair by the end of the month, so I waited for the call that my chair was ready to be delivered. The call never came, so now we are in September, and I cannot begin to describe how furious I was. I have never been so angry in my entire life.
Almost a whole year is approaching, and I still do not have my chair. During this exasperating time, my back was killing me, and my spine was moving. I was regularly attending physical therapy to strengthen my core and getting bi-weekly back adjustments from my chiropractor, but the pain remained. Sitting in a chair that provided no support for my back from December 2022 to June 2023 caused irreparable pain and discomfort to my body. By the time I purchased a better option to sit in, it was too late; the damage was already done. Part of me is angry at myself for not realizing sooner that NM was a liar and that my chair would indeed not be ready in March. Guess what?! My chair was ready in July, and no one contacted me! I actually asked the lady twice on the phone when the chair was ready when I was calling in August, and she would not answer my question.
During this time, I posted my frustration on Facebook, where supportive friends and family offered kind words and offered to start a GoFundMe to help me purchase a chair back in April, but I couldn't allow that. I would feel too guilty receiving money when this is why I have three medical insurance companies that are supposed to cover my durable medical equipment.
Furious does not even begin to explain the rage boiling in my body. We are in November now, and thanks to the wonderful therapist at my therapy, they took the initiative to call and speak to NM directly. After many phone calls, we were finally getting somewhere, or so I thought. Here comes more incompetence... NM sends my therapist paperwork that my doctor needs to sign off. So, I left therapy with the papers and went straight to my doctor's office for him to sign them. The next day, we went to pick up the paperwork only to find out that the office staff shredded the papers! YUP!!! Mind blown!
Let's wrap up this horrible situation and say, very long story short... the chair was finally delivered the day after Thanksgiving. You would think that the nightmare ends... but it does not.
Since I was fitted for the chair in January of 2023, and we are now in November of 2023, the chair, of course, was uncomfortable. Now, because so many, many months passed, of course, the chair was not going to fit as the curvature in my spine had increased. By this point, I was just relieved to have the chair, but because I have only been waiting 12 months since starting the process in December of 2022, this chair was going to be comfortable! He came, noted the needed adjustments and assured me I would have the chair BEFORE Christmas. Do you think I had my chair returned to me in time?
Christmas came and went. A week prior, I had called NM and asked when I would receive the adjusted chair, and I was told not one but two insane things. First, I was told that my chair was not being repaired and that I had never received it the first time back in November, and second, that the prescription had expired again and that I would need to start the process over again. Oh, and this is after, back in September, when I had to make an appointment with my doctor, who only had availability at his office that was 40 minutes away. I also had to schedule another evaluation with the physical therapist to resubmit the order for the wheelchair again. Again.
 I was just beyond done at this point.
I finally received the chair back the day after Christmas, and I now have the electronic wheelchair I was measured for. It only took 13 months to receive. If I had known that this process was going to take so long, I would have purchased the chair back in January, somewhat preventing this horrible physical pain and mentally exhausting ordeal.
I have the chair finally, but now, to this day I am still waiting for the entrance ramp for my front door that I ordered when my chair was delivered after Christmas. A month and a half went by before I heard anything from NM. I, of course, was not going to be vulnerable this time around, so I purchased a ramp myself that arrived the next day; what's an extra $100 from all the money I already had to spend?
Today is February 15, and I still do not have the ramp the insurance company should provide. This entire experience and process has been hell. I was financially responsible for paying for the chair I rented in May, the chair I purchased in June, and the ramp I purchased in December. I did not have the money just sitting around to purchase these items, and BC or NM will not reimburse me for the tremendous inconvenience they have caused. What is wrong with the health care system? You have people in positions to help the vulnerable and sometimes helpless, yet they do not care. It should not have taken me 13 months to receive mobility. Mobility is not a luxury, and I was denied multiple times despite pleas from myself and my doctor.
NM and BC should be ashamed of themselves. I'm not the first person to go through this; unfortunately, I know I won't be the last. Something has to change, and looking back, I wish I had actively checked on receiving my chair, but honestly, I don't think it would have made a difference. These companies are more concerned about denying claims than helping the patients and clients who need help. How can you deny someone mobility while you are freely walking around, taking advantage of people, and stuffing your pockets with greed?
I honestly have no hope of this process being improved, and I know that next time, I need to mentally and physically prepare myself for the roller coaster and nightmare that is going to be in store. Now, I am doing my best to strengthen my body as much as I can and focus on my business as a children's book publisher.
Mobility is not a luxury; and it is a necessity.
