When you believe in something larger than yourself, it’s quite extraordinary what you are able to accomplish. After becoming a complete C6 quadriplegic in 2010, it took me quite a few years and multiple long stents in the hospital to come to the realization that I simply had to find a coping mechanism for living an entirely new life in a very different body.
The absurdity of spinal cord injury with respect to the fact that being paralyzed is oftentimes the least of your challenges as compared to the endless secondary medical complications, caregiving challenges, financial burdens, to name a few, can turn a perfectly sane individual into one who is tinkering on the edge of insanity. The question remains is how do so many of us with these life altering changes cope with, what can only be described at times, as a revolving circus carnival of animals?
We each develop and build upon our own coping mechanisms as the year’s progress and as we become a little bit older and wiser in spinal cord injury years. For me, dark humor is, bar none, my number one savior to get me through most days.
Becoming a quadriplegic and being paralyzed from the chest down may appear to be the most challenging life altering event many may ever go through in their life. However, leaving aside the endless secondary complications that can arise from living a life with paralysis such as pressure sores, nerve pain, respiratory issues, osteoporosis, infections, bowel obstructions, bladder incontinence, to name a few, can, often times, pale in comparison to the financial burdens associated with living a life with paralysis. The financial hardships associated with any type of disability, one could argue, is more debilitating than the disability itself!
For the purposes of this article I’m going to be discussing some of the financial challenges and realities of living a life as a quadriplegic as opposed to a paraplegic. In general, a quadriplegic needs round-the-clock care to help with basic functions such as going to the bathroom, eating, dressing, etc. While every injury is different and there are certainly some quadriplegics who I know who live independently, I will tell you about my life in particular.
I’m super excited & honored to have been featured in a news story by Spectrum News on disability inclusion in light of recent events with the paralympian who was unable to bring her caregiver, her mother, to Tokyo.
As I always say, Disability Doesn’t Discriminate — anyone can join the club for any reason and creating a globally inclusive environment whether that be in the paralympics, employment world, your community, the government, etc. should be at the forefront of everyone’s mind!
It was such an honor to be a guest on Karen Roy’s Life Possible with a Disability Podcast. Karen Roy is a good friend and fellow Disability Advocate in the community. We talked on a range of subjects from love, life, adversity, and fighting for medically necessary equipment in the health insurance world, and what that entails.
Karen is a rock star in her own right who has been pushing for equal access to exercise equipment for those with disabilities, is Ms. former Wheelchair America, and now works with a large Durable Medical Equipment Company to push the boundaries for patient access in the health insurance world.
We had a great conversation and I do hope many people are able to take a lesson out of what we talked about in the podcast:
It’s not a very well-kept secret that the insurance industry can be unjust in addressing the needs of many of us with disabilities—especially when it comes to attaining the medically necessary equipment and services we need to improve our quality of life and independence. While countless folks in the disability community are frivolously working to change the system, the reality is that we need to learn to advocate for ourselves within the current broken system. It’s not impossible. But it does require a bit of ingenuity, persistence, and sheer determination.
I was injured in a shallow water diving accident in 2010 leaving me a C6 quadriplegic. I was left to fend for myself with respect to fighting for the equipment I needed for my daily survival in my home. While I have an army of medical professionals in my Rolodex, many of them are overwhelmed by the number of requests to write medical necessity letters to insurance companies. As a result, I discovered early that I was going to have to learn how to become my own self-advocate.
If you’ve ever applied to college you’ll likely remember waiting anxiously by the mailbox for that large envelope, which was filled with hopes and dreams of your acceptance letter into the school of your choice. The small envelope on the other hand, filled with dread and disappointment, meant that you were likely going to have to fall back on your Plan B School.
As the years roll by and you grow up that distant memory of the large envelope stays with you. It certainly stayed with me. Over the last several years after fighting health insurance battle after health insurance battle I quickly came to realize the large envelope in your mailbox was the one filled with despair, rejection, and disappointment. I dread that big envelope in my mailbox that has Blue Cross and Blue Shield labeled in the top right corner.
Over the past several months I’ve been tirelessly working on two major insurance battles, which has taken my every waking moment to push forward on while simultaneously building up my disability advocacy career from every angle I could think of. Every day as I would roll down to the mailbox my throat would get a little bit tight, my blood pressure would start climbing, heart racing, and as I was watching whoever was helping me open the mailbox that day turn the key I waited in eager anticipation for either the small envelope or the large envelope.
he last two battles I’ve been fighting have been for the VitaGlide, an adapted physical exercise rowing machine, and a total hospital electrical bed. Blue Cross and Blue Shield had initially rejected both requests. The total hospital electrical bed was rejected on the grounds that it was not medically necessary and the VitaGlide on the grounds that it was a non-covered benefit. I’ll explain the difference in a moment, but I’ll start out by saying when you are rejected on the basis of something not being medically necessary you have many more avenues to pursue for appeals than you do if you get rejected because an item is a non-covered benefit under your insurance plan.
It’s hard to believe that it’s only the middle of February and with the state of affairs in the world today I try very hard to focus my energy on affecting change in whatever capacity I am able to in order to bring a little bit of light into this world. I’ve said this time and time again, but kindness, positivity, and perseverance go a long way in my book.
I would be a hypocrite if I didn’t attempt to put actions to my words. So, I have made quick work of focusing on two new Blue Cross and Blue Shield cases, which I believe are so important for so many who are disabled.
My overarching mission in these constant insurance battles is not to just simply win “stuff” from insurance companies, but rather to strategically attain medically necessary durable medical equipment that not only improves the quality of so many people’s lives, including my own, but our independence and dignity.
The challenge lies in that many of our health insurance policies are simply outdated and many of them do not factor in the special needs for those who are severely disabled. With that said, it is my goal to create a host of documents with letters of medical necessity written, so patients can just hand them to their doctors and fill in the necessary personal information.
I’m working to change the system from the inside out, but in the meantime many of us really need to learn how to operate and navigate within the broken system we are currently faced with. It’s not easy and most people don’t have the time, energy, or know-how to get things accomplished. Unfortunately, many people just take their insurance policy at its word and don’t test the system.
Change does not come from blind compliance!
We have to push the boundaries because we are, the disabled community, a very much forgotten about segment of the population in the eyes of health insurance policies.