Where does one even start reflecting back on the year of 2020? This has been a year to remember for the ages from pandemics to politics to pandemonium around every corner of the globe. The human race has endured throughout the ages and what millions of us are facing today will undoubtedly be written as a dark chapter in the history books, but there’s one overarching concept that continues to guide many of us during these dark times – Hope. Hope for a better future, hope for a vaccine from this pandemic, hope for our fellow humans to be kind to one another, and hope for the will to survive both physically, and mentally.
Each one of us has been faced with our own personal hardships & challenges, and while many of us may have trouble seeing beyond the trees within the vast forest – we will somehow prevail as we have done for thousands of years.
For me, 2020 has been a year of incredible clarity. While there are moments I feel intense guilt for thriving in such a dark time, I have finally found my purpose in life. In short, fighting for those who cannot fight for themselves. After 10 years of fighting my own personal battles for survival through the labyrinth of all of the complications that accompany a spinal cord injury and being paralyzed from the chest down, I finally reached a tipping point in my own life where I’ve come to realize how short life really is.
With that said, I often think about the seemingly impossible challenges I have to endure both medically and emotionally with the hand I have been dealt. No matter how positive or upbeat I may be, this life of being paralyzed on 80% of my body is one that takes a toll on a daily basis. However, when I think about what I want my life to look like at the end, and especially with no legacy of children to carry on when I am long gone, I want those around me to feel inspired to fight the many injustices so many of us endure on a daily basis.
If we are lucky enough to find a purpose in life, as I have through starting what I am sure will take decades of my life, this life is worth living in my opinion. I have used my disability, especially in 2020, to propel forward the mission of, not just fighting with insurance companies to get medically necessary services and equipment for those in need, but need to change the system from the inside out. I am just one person and while I may or may not make a dent in my long-term mission of changing policies within a behemoth health insurance system; I have high hopes that many who come after me will continue my journey as I continue the journey of those who have come before me.
I have been incredibly fortunate to be blessed with such a supportive family, a strong sense of determination in whatever I set my mind to, an ability to never give up even when imminent defeat lies ahead of me, and the ability to continue to push forward in the face of intense adversity.
As I write this article, Sun Tzu’s “Art of War” continues to resonate with me on a daily basis. As Sun Tzu quoted “If the mind is willing, the flesh could go on and on without many things.” This is so true in my situation as my flesh frequently goes without since I suffer from paralysis on most my body, but my mind is strong. I will endure and will continue to endure even when all hope might seem lost at the moment.
My Mission
My focus really came into the forefront of my life in January 2020 when I started to battle insurance companies for medically necessary equipment that had been constantly denied to me over the last decade. The pandemic afforded me the opportunity of TIME.
Time is such a precious concept in our short human lives, but being on lock down gave me the time to strategize on battle tactics for the long-term war I am presently engaged in with trying to change aspects of the health insurance system one policy at a time for the severely disabled.
When you’re up against Goliath it can appear as though you don’t have a chance in hell to win what is just in an unjust system. However, Sun Tzu said “Opportunities multiply as they are seized.” In the world of Carpe Diem, we must seize the day and continue on no matter how many battles we lose.
To add to that, Winston Churchill said “The definition of success consists of going from failure to failure without loss of enthusiasm.” In order to win the war we have to band together to affect change.
Over the last year I’ve merely started scratching the strategic surface of trying to fight these large insurance companies. It’s important to note that we live in a democracy(even though it may seem like an illusion democracy at times), which allows all of us to speak our mind without the fear of retribution as in countries such as China or Russia.
I’ve undertaken the mission of 4 particular battles this year. Two of which I have won, one of which I suffered a crushing defeat, and another I am presently engaged in. Even with the crushing defeat as I will outline below, this defeat just tells me I need to retreat back to base camp, re-assess a new strategy, and try again in the New Year.
I can do this, we all can, but if we stand together we will have a higher chance of success by intimately knowing our enemy and changing the system one policy sentence at a time. Over the last year I have written many articles about different battles I engaged in with Blue Cross and Blue Shield – I’ve outlined them for you below, soyou can get a sense of where I’ve been and where I will continue to go in 2021 & beyond …
Let me preface by saying you can read all of the work I have put into my insurance battles in great detail at www.quirkyquad.com
Power Chair Seat Elevator
In the beginning of the year I was denied a seat elevator for my power wheelchair, which for a variety of reasons, was medically necessary for my level of disability. I was denied to the highest level by Blue Cross and Blue Shield and had exhausted all of my appeals.
I felt hopeless and defeated. However, once the pandemic hit and I had so much time on my hands at home I decided to take my fight in a variety of directions. I reached out to my local legislators, my local media representatives, wrote multiple articles nationwide, and created a multi-pronged strategy to shed light on the medical necessity of certain pieces of equipment that the severely disabled need to, not only survive in life, but thrive as productive members of society.
I won this battle and gained quite a lot of media attention on it.
Specialized Shower Chair
Most insurance policies do not consider specialized shower chairs that tilt back, roll into the shower, have headrests, leg rests, etc. as medically necessary. Most insurance companies will pay for a simple shower bench, but when you’re severely disabled, and paralyzed from the chest down, you have greater needs because you run the medical risks of pressure sores, low blood pressure episodes, fall risks, etc.without the proper equipment.
There is no specific language in most medical policies that deny specialized shower chairs, but insurance does it anyway. You have to fight, which involves creating a team of medical professionals who are on your side in addition to the tenacity to keep pushing, and pushing in the appeals system. It’s not easy, but doable.
I also won this battle and perhaps it’s because I have “*” under my name with insurance that I am a pain in the butt, but I was starting to get noticed, and it paid off.
VitaGlide Rowing Machine
This next battle resulted in a crushing defeat for me this year, but that has not deterred me from continuing on in the New Year. Most insurance companies advocate for preventative healthcare, but do not really practice it in reality.
When you’re severely disabled exercise is key to prolonging life and this holds especially true for those of us in wheelchairs. It is one thing to be an able-bodied person and try to request an exercise piece of equipment, but when you are wheelchair-bound exercise is not just preventative for long-term health, but prevents complications such as pressure sores, low blood pressure issues, respiratory issues, etc. The list really goes on.
The challenge lies in policy language for insurance companies. They call physical exercise equipment a convenience item and they are instantly rejected because they are not included in the policy language. There is simply not enough research out there that companies have taken the mission to undergo to prove how specific pieces of equipment are not just for exercise, but help many of us to reduce the number of caregiver hours by being able to take care of ourselves because we have the strength to lift ourselves onto our bed with our limited functional mobility. The reasons why specialized range of motion and exercise equipment are medically necessary and should be considered Durable Medical Equipment are endless.
The VitaGlide rowing machine along with dozens of other pieces of range of motion equipment to help many of us who are severely disabled better participate in society are simply excluded because of simple language. Many of these insurance companies don’t factor in the very small population in the United States for those who are in wheelchairs and need reasonable accommodation for our disabilities.
If an insurance company would simply do the mathematical calculations of what it would cost to spend a few thousand dollars on a piece of range of motion equipment to prevent many secondary complications as opposed to the hundreds of thousands of dollars they would have to spend on long-term medical stays due to secondary medical complications such as pressure sores, urinary tract infections, broken bones, etc. it would make our life so much easier.
However, this is not the reality we live in at present and change needs to be approached from the inside out. How do we exactly do this? I am presently on this mission as we speak. In short though, getting involved in politics from an advocacy perspective is going to be necessary.
I was rejected from the Department of Insurance, Blue Cross and Blue Shield appeals team, the news outlets, and multiple legislators due to the unprecedented times we are dealing with because of the pandemic. However, this does not mean we should stop fighting.
I lost this battle. I will not lose the war no matter how long it takes me. I will start afresh in 2021 and continue my mission of trying to change policy language because while I may somehow find a loophole through working with legislators, we need to create systemic change; not just on an individual basis.
I spend dozens of hours each month on this and while I appreciate many folks in wheelchairs are just trying to simply survive their day because insurance gives them just what they need to survive, and not thrive as productive members of society; I will take up the fight for them. I will never give up.
Pressure Relieving Mattress
This is one battle that truly boggles my mind and has simply to do with insurance policies. Let me explain. When you are paralyzed and are unable to feel most of your body, the incidence of severe pressure sores GREATLY increases if not inevitable without the proper support mattress. This leaves many of us in bed for months, which results in long-term hospital stays because surgery is required to fix damaged skin that is oftentimes down to the bone. I’ve lost count of the number of spinal cord injury folks, including myself, who have spent over a year in bed simply trying to heal a pressure sore on the wrong mattress. The simple act of insurance paying for a pressure relieving mattress would solve a world of problems for so many of us.
The challenge lies in that many companies that sell the specialized mattresses simply will not work with insurance companies because of what insurance companies are willing to pay them for the mattresses if they are in network. I won’t even get started on out-of-network rates for the individual.
This leaves thousands of people in a serious conundrum because they are forced to submit a claim on their own to insurance company, which, trust me, is needlessly complicated as I am presently learning myself. I did gather all the paperwork and submitted all the proper documentation to my insurance company. They actually did approve the mattress as an in network benefit in addition to approving prior authorization.
At first glance I thought this was a win, but I then learned I would have to purchase the mattress myself as an individual, submit for reimbursement to the insurance company, and accept whatever in network allowable rate their policy dictated. So, the mattress I so desperately need is $2,600, but the allowable amount Blue Cross and Blue Shield may pay may be far less than this. Therefore, I would be left holding the difference in price. More than that, I, and so many others, don’t have $2,600 laying around to outlay the capital cost to purchase the mattress first.
I am desperately in negotiations with Blue Cross and Blue Shield on making allowances on their reimbursement policy as an individual to see if they can pay for the mattress first. I understand from their perspective that if they just write me a check I could go and spend it on a TV, but perhaps there could be some reasonable accommodation where I have to prove that I purchased the mattress within a certain time frame in order to show that I am not just trying to receive free money as they say.
I have one more month left in this year and am scrambling to see if they have a workable solution, but as of yet I am in a stalemate. This is a larger issue than just me getting a mattress – it’s about reasonable accommodation for those in particularly trying medical situations. Insurance companies are a for-profit business. That’s fine. These insurance companies will continue to follow their policies unless we challenge them with our legislators or through a giant social media campaign to put pressure on them.
This may seem like a battle that ultimately may be lost, but I don’t think so. If we can get certain sentences and policies changed it would mean the world to the thousands of us who are in desperate need of piece of equipment like this.
It’s mind-boggling that insurance rather spend $60,000, which they did on my surgeries for my pressure sore surgeries in 2016 than pay $2,600 for a mattress to avoid these long-term costs. It’s outrageous.
2021 Strategy – Re-grouping
So, tallying up my wins and losses for the year? Well, I’ve won 50% of my battles. Considering I only started this mission less than 10 months ago I would say am doing pretty well, but the work has just begun.
“He will win who knows when to fight and when not to fight.” Sun Tzu had some incredible battle tactics back in 500 BC and this one particularly resonates with me as 2020 quickly approaches its end.
It’s important to know when to back down and not back down. In light of this pandemic, legislators, news outlets, and other organizations around the country that would normally be willing to help me – they are simply overwhelmed by world events. That’s okay and that makes sense right now.
However, I humbly accept defeat where I fought the best I could, but I will come back in 2021 with new strategies, outside counsel, and battle tactics to continue my fight.
I welcome all those who want to join my mission to team up with me because we have to stand together.
My personal mission has to do with insurance companies, but you may have other personal battles you are trying to fight in your life to survive. That’s great. It doesn’t matter what you’re trying to stand up for, but stand up for it! If you are able to help a neighbor or friend or family who cannot help themselves, and you have the time to help them, help them.
We live in such a harsh world with so many injustices, but if we take a moment to remind ourselves what makes us different as human beings, then the answer, in my opinion, is the choice to be incredibly kind to one another, help thy neighbor, and sometimes put other people’s needs ahead of your own.