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.
Recently my husband and I took a week long vacation to visit a friend in Florida. I distinctly remember one day when he was helping me with all of my bathroom duties, getting my swimsuit on, lifting me up from a very low surface bed (killing his back), lifting me into the pool, showering me by the pool, helping me with my makeup, straightening my hair, and then cleaning up. These are just a few of the things he’d helped me with that day, but the list really does go on.
The numerous amount of small things I need help with in a day seem endless whether that be filling my water bottle, fixing my feet on my wheelchair, grabbing my legs as I have uncontrollable spasticity, getting me in bed when my pain is through the roof, etc.
The day came and went, and as I was hanging out with my girlfriend I rolled back into the bedroom to find him sprawled out on the bed. He was just tired – I mean how could he not be? He was taking care of his quadriplegic wife 24/7 for 8 straight days. I remember thinking how guilty I felt for being such a burden, but not once did he make me feel that way. These are my own demons I battle with as a quadriplegic because I need full-time help every day – all day.
Over the last several years I’ve made it my mission to try and overturn health insurance denials for what I, and many of my medical professionals, deem is “medically necessary” for in-home use with my specific quadriplegia medical condition.
Often times my insurance company believes that the type of medical equipment I try and have approved, usually referred to as Durable Medical Equipment (DME) is not “medically necessary” for me, but rather an “accessory” to my life. My job is always to try and prove that their definition of medical necessity is skewed for the very small segment of the population who suffers from paralysis.
…. Recently, there were a few wheelchair users who made comments to me that I was simply manipulating the system and making it worse for everyone because I am trying to “game” the system. They were trying to say that I don’t NEED the equipment I am after, but rather WANT it …
… This really got me thinking! Am I manipulating the system? Let’s dissect the argument ….
Since winning the approval of my seat elevator for my power wheelchair through navigating the labyrinth of Blue Cross and Blue Shield’s appeal’s process by taking my story to the local news – I have since been busy making quick work of trying to get further “medically necessary” equipment approved by insurance.
A challenge many of us face within the world of health insurance and disabilities is trying to prove, and convince insurance companies that many pieces of equipment we need in our home such as specialized shower chairs, seat elevators for power wheelchairs, specialized manual wheelchairs, adaptive exercise equipment, etc. are not “accessories” as defined by health insurance companies; rather they are “medically necessary” to not only survive in our daily lives, but to thrive.
In this light, my advocacy mission to help folks learn how to be their own advocates has really taken off. I thought of no better way to teach folks how to be their own best advocate than by working towards getting equipment in my own home that is “medically necessary” approved for myself first. This way I can better help folks navigate within the private health insurance world first, then later on to Medicare & Medicaid, with respect to best practices & strategies for winning health insurance denials.
About a month ago I embarked on my next mission to see if health insurance, specifically Blue Cross and Blue Shield, would pay for a highly specialized shower chair.
Each morning I wake up at the crack of dawn, work with my caregiver for several hours to get ready for my day, and then pump out work for around 10 to 12 hours each day, continue to work my caregiver for afternoon activities, then rest, repeat, and start again in the morning.
At the ripe young age of 10 years old I attended Catholic boarding school in London, England. I’ve been conditioned to work harder, smarter, more efficiently, and just keep going. Don’t get me wrong, I have my fair share of fun, but hard work has been ingrained in me as long as I can remember.
My definition of work has changed over the years and now encompasses spending my day working professionally, advocating for those who can’t advocate for themselves, working on trying to build a large social media following in order to affect greater change, and find some kind of balance in my personal life. I’m not always brilliant at it and I know there are so many other people in life trying to juggle balance too. Continue reading →
After a long and arduous 7-month road of winding adventure of denials, appeals, and out of the box advocacy techniques … I’m proud to announce I took receipt of my new power wheelchair yesterday with the seat elevator I was denied.
I outlined several detailed articles in Push Living Magazine (article 1, article 2, article 3) on the labyrinth I had to make my way through during this process.
I went to the local media and was able to land a written piece by News & Observer and a small TV segment by ABC 11’s Diane Wilson, investigative reporter, on the battle I underwent.
During this pandemic the most unlikely of things happened. I developed a laser focus and passionate advocacy mission all the topic of health insurance denials for medically necessary equipment.
Whether you have Medicare, Medicaid or private insurance, there is a process, albeit tedious more often than not, where you can navigate your way through the maze of red tape to overturn an insurance denial. You have Rights!
Over the last several months I’ve connected with friends from around the globe and have observed a wide array of different reactions on how they have been dealing with the pandemic during lock-down, and how their normal lives have changed to date.
This pandemic is not going anywhere anytime soon, and as such, many people have had to change their daily routines such as working from home, wearing a mask to places of business, limiting their movement in social gatherings, etc. Leaving aside the economic impact, I’ve been curious as to how people have been coping mentally. More specifically, I have so many friends who have also sustained a spinal cord injury (SCI) as well as many able-bodied friends.
I’ve noticed a stark contrast in how many of my SCI friends have been coping with the pandemic versus my friends with two working legs. Personally, I can relate more closely my SCI friends on this front. The pandemic has caused me to push the pause button on my life since taking that fateful shallow water dive 10 years ago this August.