As I was strapped into my electrical stimulation bike while simultaneously lifting weights I had my Bluetooth snuggly positioned into my ear listening to my “Rock it Out” music to keep my motivation over that next hour. Pandora played a song by the black-eyed peas, which came out in 2010 called “I’ve got a feeling.”
It’s an incredible dance song when you want to feel pumped up and I used to play it on repeat before my accident in 2010 when I was living at my home in the Bahamas. I would drive my friends up and down the island on the weekends listening to this song. I even found pictures on my computer from 10 years ago to those exact moments when I was listening to the song.
It was a time in life that reflected simplicity, clarity, and pure joy. Life was so simple back then. I was pumping myself up last week because I’m in another battle of a lifetime with Blue Cross and Blue Shield (BCBS) for a new power wheelchair. The last power wheelchair I fought for was back in 2015.
I started the uphill mission of working with my durable medical supplier, my physical therapist, and my general practitioner. I went to my physical therapist for a seating evaluation and she then proceeded to write a letter with mounds of paperwork to BCBS trying to justify why I, not only needed a power wheelchair for my level of injury, but why every single button was a medical necessity. If you’re unfamiliar, many power wheelchairs have dozens of little buttons that allow the chair to elevate vertically, tilt backwards, raise the feet up, and for various reasons, each function is very critical to allowing me to live a semi-normal kind of life in a wheelchair.
I was assured that all the letters had gone to the proper channels and I didn’t have any reason to believe otherwise. About a month ago I started to get curious, because I do know these things take several months to get moving, why I had not received any information from my physical therapist, my durable medical supplier or my doctor as to where the wheelchair was in the process of being approved by insurance. I’m going to leave the fact that I think it’s nearly criminal I have to justify why I need every function of a power wheelchair aside, but suffice to say things were not moving along.
Two weeks ago I did, finally, receive a letter from BCBS saying that they were denying me a very critical function of the wheelchair called the seat elevator. This allows my power wheelchair to go up and down. Most insurance companies do not think this function is medically necessary for folks in wheelchairs. I then called all the parties involved and there was a complete disconnect among my medical providers. So, in a very Ali fashion, I decided to take matters into my own hands. The age-old saying “when you want something done right, do-it-yourself,” holds true 100% of the time.
I then made quick work of contacting all the parties involved to figure out what the next steps would be. I kept getting thrown around the loop, saying that a letter had already been sent to the appeals department. I then received another letter from BCBS saying that they denied the seat elevator. Finally, after many long and arduous phone calls, I was able to get in touch with a person who was in charge of my appeal.
I was able to get my hands on a copy of the appeal letters that various medical professionals sent into Blue Cross on my behalf. To say I was underwhelmed at the quality of these letters would be an understatement. No wonder Blue Cross denied me three times for the seat elevator. I asked the BCBS representative if I could put in my own personal letter of appeal to justify the reasoning behind why I believed the seat elevator function for my wheelchair was medically necessary. She told me I could write a letter and fax it in. The committee would then meet in the next 30 days to make a final decision as to if I was eligible for this function of a wheelchair.
I thought long and hard, and crafted what I believe to be, an airtight letter to the appeals committee for my wheelchair. As I was writing my letter I thought there’d likely be a medical professional on the board, someone from the financial department, and likely some kind of patient advocate. With this in mind I wrote a letter that hopefully pulls at the heartstrings of the committee, shows the medical necessity of why I need this seat elevator function my wheelchair, and why folks with spinal cord injury are at the mercy of people sitting on the appeals committee.
Without further ado, this is the appeal letter I sent into the BCBS appeals committee last week. I will keep you posted on what their decision will be, but when you really want something, you’ve got a fight tooth and nail to get it.
Sadly, this is the reality we live in, and the fact that we have to justify why we need certain items to insurance companies to, not only survive with the spinal cord injury, but to thrive with it is slightly disheartening. However, this is the healthcare system we presently have to navigate within!
“Dear BCBS Appeal Team,
Please let this letter serve as a patient addendum for the appeal of the seat elevator function for the power wheelchair I, Alexandra Ingersoll, have submitted to receive from BCBS.
I am confident I will clearly demonstrate the medical necessity for this function with my level of spinal cord injury as a C6 quadriplegic paralyzed from the chest down with minimal arm movement, and paralyzed hands.
I know that every case has to be based on stringent protocols, but there are certain circumstances, like this one, where a team of peers come together to determine if a patient needs a specific piece of medical equipment or treatment. I believe, in these cases, it’s important to understand the exact circumstance of this patient. With that said, I think it’s crucial to understand the circumstances surrounding my case in particular.
BACKGROUND
Please take a moment and wiggle your toes. Really feel the wiggle as you move the big toe, and then the middle toe, and all the way down to the pinky toe. I just want you to feel all the muscles flexing in your calf and your thigh, etc. Now, please just slowly stand up while trying to feel all the muscles it takes to do that. Once you have stood up, just stand there for a moment and think about all of the things that simply standing up allow you to do. It allows you to live alone, put your own clothes on, go to work like you are right now, etc. Such a simple little movement of standing up.
Now, more importantly look at all of your fingers – move every single one. Close your fist in a ball and squeeze your hand tight. It takes dozens and dozens of simultaneous ligaments and muscles in your hand to move a single finger. Your brain is an amazing thing, but when you have an obstacle (like scar tissue) in the way in your spinal cord these seemingly effortless motions are easily taken for granted when you can’t do them.
While it may seem more impressive that you can stand up and walk around, those little fingers that you wiggle on your hand allow you to do pretty much everything even if you can’t stand up. You can grip a pen, pick up a piece of paper, brush your teeth, hug your spouse & your children, chop your vegetables for a fresh dinner, and many other activities you probably don’t give much thought to.
I’m 37 years old and I broke my neck 10 years ago this year. Whenever I see people in a wheelchair I used to feel sorry for them because of all they had been through. I had no idea what it actually meant to not only try and live with a spinal cord injury, but survive with one. I’m still young and vibrant, extremely positive, help mentor other quadriplegics in the community, work full-time, but I deal with a lot. We all do. I’ve lost count on the number of surgeries I’ve had, years I’ve spent in bed from pressure sores and surgeries looking at four walls, living with nerve pain all over my body that feels like it’s burning me alive from the inside out every day and all day, but through all this – I still persevere. I know I can do this, and I do.
I spend all my disposable income paying for caregivers out-of-pocket because insurance doesn’t think I am paralyzed enough from the chest down with paralyzed hands to have a caregiver more than a few hours a day. I simply can’t take care of myself 100% of the time despite how positive I am. I have to have somebody put their hands in all parts of my body to help me go to the bathroom, dress me, shower me, etc. This is my life every single day.
But you know what? I do it with a smile because I take incredible pride in being able to do what I can. Honestly, as with anyone in a wheelchair, we’ve had to change our definition of what we can and want to accomplish because of our physical limitations. This is okay. This is life. We adapt.
So, something as simple as being able to lift my wheelchair up to the microwave to turn on my food for dinner by myself even though I can’t cook on a stove OR raising up my wheelchair to my sink so I can brush my teeth on my own without the help of someone OR being able to open the fridge and get that apple by myself without help; these are the things that I have control over, and that make life fulfilling to me.
So, I hope you can now appreciate what the small things in life do to allow me to be more independent. Everyone reading this letter has the authority to bless me with the gift and necessity of offering me the power of independence with something as simple as a seat elevator on my power wheelchair. It’s unfortunate we live in a system that I have to plead my case to have more independence to an insurance company, which leads to a more fulfilled life and less mental anxiety, but that is the world we live in presently. With a power wheelchair alone, without the seat elevator function, I can move back and forth, but I can’t live up to my potential of independence.
A simple wheelchair function of raising myself up vertically may seem small to you, but it is my world, my life, and my path to freedom.
MEDICAL NECESSITY – TECHNICAL
Now, from a medical necessity and technical perspective I offer you the following reasons why the seat elevator is medically necessary for me, Alexandra Ingersoll, for the new power wheelchair I applied for:
- 1. Half a decade ago I was approved to have a seat elevator function on my wheelchair. It’s in my medical records and should be approved this time as my spinal cord injury has not changed over the last five and a half years.
- 2. Bed Transfer
- a. In order to safely transfer myself in bed as a quadriplegic who is paralyzed from the chest down with no stability and limited hand function I have to have a completely flat surface for transfer. My bed does not raise up and down, and my chair is lower than my bed. This is an absolute critical function for me to be able to safely transfer to my bed. If I do not have an exactly level height when transferring into bed it can result in falling out of bed, and onto the floor when I am alone and do not have caregivers at night.
- 3. Bathroom Sink
- a. My bathroom sink is not at an ADA height and I do not have the ability to fix it because I spent all of my spare income on caregiving. I need to raise my chair up in order to brush my teeth, wash my hands, do my makeup, and groom myself. My sink height is 39.” I need a seat elevator in order to get the appropriate height.
- 4. Microwave & Refrigerator
- a. When I am alone in the house and do not have a caregiver with me I need to make food. Because my hands are paralyzed I cannot cook on the stove myself some other quadriplegics can because of severe ongoing muscle spasms in my hands, which would likely result in burning myself while cooking. I need to raise up to get to the microwave to heat my food or put my pre-made meals in the microwave. I also need to go in the fridge to get my food and beverages. I can’t put my beverages on the lower shelf because they do not fit. The microwave height is 58”
- 5. Desk
- a. I have a higher desk and I work full time at the computer. I cannot make a living or interact with the world without raising my chair up to my desk. I cannot just put a laptop on my lap because I have a computer set up that is adapted for my level of being a C6 quadriplegia with an adapted keyboard and large mouse that I need on the desk. My desk height is 40.”
- 6. Counter height
- a. In my kitchen and all throughout the house I cannot reach over my counter and lift my shoulders up because of severe neck and shoulder pain I suffer from. I had a triple laminectomy, removing three of my vertebrae in 2013 due to an arachnoid cyst that was killing me. As a result I was left with severe neck pain and nerve damage on my right shoulder, and down my right arm. I cannot physically reach for something if it is higher than shoulder height.
- 7. Washing Machine
- a. I have a stackable washing machine and I am able to do limited laundry by myself. My dryer is stacked on top and I cannot physically reach the buttons if I do not have a seat elevator. My stackable dryer height is 59.”
- 8. Closet
- a. I have multiple shelves in my closet. While I do have some close on the lower shelf it is not enough space for me to put everything I need. I have to raise my chair up to get items I need.
- 9. Thermostat
- a. My thermostat not at eye level and I cannot the reach to change the temperature myself if I do not have a seat elevator.
- 9. Thermostat
- a. My thermostat not at eye level and I cannot the reach to change the temperature myself if I do not have a seat elevator.
- 10. Bio Mechanics
- a. The ability to adjust the height of the seat allows me improve the biomechanical advantage of reaching at the shoulders, elbows and wrists to access things all around the house such as light switches, thermostats, faucets as mentioned above.
- b. In addition, due to the severe neck pain I suffer from, as mentioned above, I have to speak with most people at eye level. When I am constantly tilting my head up to look at people from a lower seat my entire day ends in a chronic nerve pain episode where I can barely move my neck left or right.
I’d like to sum up this appeal by explaining that a seat elevator is not a luxury or convenience for someone who is permanently disabled who cannot stand, reach or function in their environment without the use of a power adjustable seat height technology. It is important to me to live a life as best I can and to my full potential despite being permanently disabled. So many small things I have outlined above many able-bodied people take for granted. The approval of a seat elevator needs to be reviewed on a case-by-case basis, and I believe I have done so above.
Thank you for your time and consideration.
Please note if you need visual confirmation of the Heights I mentioned above up the microwave, washing machine, thermostat, etc. photos can be provided.
Alexandra Ingersoll”