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.
Bigger Picture
In general, I’ve had quite a lot of success so far. Recently, I’ve made it a mission to trying get a piece of adaptive exercise equipment paid for by my health insurance company. Approximately a week ago I received a denial letter from my insurance company stating that under my medical policy they do not cover physical exercise equipment, and because it is not covered anywhere under my policy I forfeit the right to my first level appeals, and have to go to the final second-level appeals.
Okay, no problem… I understand this process. I’ve been to this circus before with trying to fight for a specialized functional electrical stimulation bike, which essentially sends electrical shocks into my legs as I bike, which serves to improve muscle mass, reduce spasticity, improve blood flow, etc. Blue Cross and Blue Shield also deemed that this bike was physical exercise equipment and denied me a final time.
I then spent the better part of two years going above their head to the North Carolina Department of Insurance to have this decision overturned. Thankfully, an independent committee deemed that while this bike is technically exercise equipment it also serves a medical function for me because I do not have the ability to move my legs on my own, and this bike severely reduces the chances of secondary complications in my particular situation.
The piece of exercise equipment I am trying to have approved now, which may be a bigger battle than the bike is called a Vitaglide. This piece of equipment is essentially a rowing machine. Yes it is definitely a piece of exercise equipment, but I’m trying to make the case that because I am paralyzed and do not have many forms of exercise available to me, Covid -19 gym closures, and I cannot simply take a walk to get exercise at this piece of exercise equipment is medically necessary for me.
I am trying to prove that exercise, when you are paralyzed, is not just a preventative health measure, but medically necessary because without the proper strength in the 20% of muscles that are not paralyzed I am unable to transfer myself into bed, helped get dressed, or have the strength in my arms to lift things, etc.
Manipulation Back Story
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.
They then followed by basically saying (I don’t want to quote them because it was from a private Facebook group, so I’ll summarize):
Part of the reasons we have such challenges with our insurance companies refusing to pay for things that have a true medical need is because people exploit and manipulate the system to get what they would like, and not necessarily what they need medically — You get the idea.
They were saying that insurance would never approve a piece of exercise equipment, and they may still deny me, but that even me trying to have my seat elevator approved over the last several months was a manipulation of the system because I don’t need to raise my chair up in their opinion.
I didn’t specifically get comments on the specialized shower chair, but I think a similar argument would probably ensue.
I believe what they were also trying to get at is that because my health insurance policy would not cover said pieces of DME equipment that I do not have a right to them, therefore I must be manipulating the system.
This really got me thinking!
Am I Manipulating the System?
I really had to take a beat to stop to see if I am indeed guilty of this? I certainly don’t want to make the system worse for anyone else… This is the opposite of my intention. I want to help people navigate the appeals system to get what they need.
This led me to think about the concept of “NEED” & Health Insurance Policy Language. I will dissect the concept of need first, in my opinion:
Concept of NEED (For equipment I have had approved or am trying to have approved)
- a) Do I need a specialized shower chair? No. I definitely don’t need it. Do I want it? Yes.
- b) Can I continue to take bed baths for the rest of my life? Absolutely.
- c) Okay, so I don’t need a shower chair. Do I deserve one?
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Well, that depends … Do we deserve anything in life? In my opinion, probably not. I believe we have to fight for what we think we deserve especially if we have a healthcare system that we pay into – and more specifically if we pay a ridiculous amount of money into a broken private healthcare system, which I do.
- d) Why do I think I need it?
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To improve my quality of life. I would like to shower just like everyone else, but according to the language of my health insurance policy it is an accessory, not a medical necessity (not just a shower bench, but a highly specialized shower chair.) I will dive into health insurance language below.
- a) Do I need a seat elevator? No. Do I want it? Yes
- b) Why do I want it?
- So I can get up to the microwave to make meals, open my front door, get up to my bed for a level transfer, get up to my desk so I can work, reduce my number of caregiver hours, among others reasons.
- c) What would I do without it?
- a) Increase my caregiving hours so people can do everything for me even if it leads me being less independent.
- b) The point is I can physically survive despite reducing my quality of life.
- a) Do I need it? No. Do I want it? Yes.
- b) Why do I want it?
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i. To maintain the 20% of muscle mass in my body in order to help transfer myself, get dressed, reduce serious amount of pain from lack of working out, among other reasons.
- c) Are there other forms of exercise equipment that are cheaper?
- i. Of course. I have some of those cheap stretchy bands for weights. Why should insurance pay $3000 piece of equipment for me?
- 1. I’ve been using this piece of equipment for 10 years before mine broke and it works well in my specific condition because of loosened scapular muscles from previous surgeries, and injuries.
- 2. It works very well for my body, but that doesn’t mean I need it.
- i. Of course. I have some of those cheap stretchy bands for weights. Why should insurance pay $3000 piece of equipment for me?
- d.) What would I do without it?
- i.) I would survive, but probably not be in as great of shape or in more pain because things like cheaper arm hand cycles really hurt my shoulder. I would just be weaker, but I would survive.
- ii.) I could go to a spinal cord injury gym at roughly $100 an hour. Can I afford this regularly? No. Should I have to? That’s debatable depending on who you ask.
1.Specialized Shower Chair
2.Seat Elevator for Power Wheelchair
3) Vitaglide – Rowing Machine Exercise Equipment
Okay so I’ve proven that I definitely don’t need anything that I have had approved or am trying to have approved. If anything I make the case that it will improve my quality of life. Now, does this mean that my health insurance should help me improve my quality of life or only provide lifesaving equipment to physically keep me alive?
This leads to the question of the responsibility of health insurance companies in our country?
Is surviving all we should hope for?
I don’t think so, but if many believe that we only need lifesaving equipment that is technically covered under health insurance policies… Then surviving is all many of us will do in this small segment of the population who are severely disabled and/or paralyzed.
This leads me to the next topic:
Health Insurance Policy Language
This is where things get tricky and I suppose is a matter of what your belief system is. It’s no secret that health insurance companies have a deny, deny, deny policy, and very broad coverage terms for the masses.
If you can prove me wrong in finding language within your health insurance policy that specifically addresses the plethora of needs or folks specifically with spinal cord injury, spina bifida, multiple sclerosis, or any other severe disability involving paralysis, please comment below.
I have not found any of the specific language and I firmly believe that laws and policies throughout history change when the masses speak up, and try to change laws. Women and African-Americans, for example, did not have any rights throughout history until the masses started to make noise.
Should I just accept that insurance does not deem a specialized shower chair medically necessary because it is not specifically in their policy language?
Let’s take something more complicated though… A piece of exercise equipment.
We’ve already established that I don’t need it, but that it will genuinely improve my quality of life.
Do I deserve my quality of life to be improved? Under a health insurance company’s perspective, likely not — How about from a human perspective – many would argue, probably Yes (I like to think so anyway.)
A few decades ago the tilt function of a power wheelchair was not considered medically necessary, but now it is because people fought for the right for this feature to be included as medically necessary under health insurance plans, which it is depending on your level of injury.
Why is the tilt function of a power wheelchair so important for so many? The two top reasons that come to mind is weight shifting to prevent pressure sores and extremely low blood pressure episodes, which many of us with a high level spinal cord injury suffer from due to the impairment of our autonomic nervous system.
We still don’t need the tilt function of power wheelchairs, but it significantly improves our quality of life. If I could not tilt back then I would just have to spend more time in bed and not upright leading to secondary complications, but I would likely survive despite my quality of life being seriously diminished.
The arguments go on and on, but one thing is for sure is that private health insurance companies are a for-profit business and they are going to try and make a profit – that’s their job. Do they care about you or me? Probably not because often times we’re just a number in the system. That’s okay, but you just need to know how to navigate the system.
I strongly believe we have to fight for our right to survive and improve our quality of life through group advocacy. I think we should all be on the same side of the fence on this in the disability world, but the beautiful thing about this country is the right to debate, and disagree.
The language within health insurance policies is so broad and vague, and definitely doesn’t cover the very small segment of the population that has higher needs, and higher costs. I couldn’t give you the exact figures, but the cost of acquiescing to the requests of the severely disabled probably doesn’t affect the bottom line profits of insurance companies too much. However, they are not going to give up these dollars for free. We have to fight.
Conclusion
After going around and around in my head thinking about if I am manipulating the system, I’ve come to the following conclusion.
NO – I am not manipulating the system. I may be navigating within a grey area at times because there’s not specific language to address certain needs of the severely disabled community.
The more important question is:
Am I doing this all for the right reasons or my being selfish about it? I like to believe I’m doing it for the right reasons and helping people, but everyone is entitled to their own opinion.
If we don’t keep pushing the envelope of what we believe insurance companies should do for us as a for-profit company, then many of us are going to live the rest of our lives in a seriously diminished capacity.
I may yet get turned down for the exercise equipment because my insurance company maynot believe it’s medically necessary for me, which is fine. The worst anyone can do is say no, but if we don’t try then we’re never going to know.
Think about if tens of thousands of people banded together to deem adaptive exercise equipment as medically necessary for numerous reasons… Do you think that would garner media attention and then change insurance companies’ definition of medical necessity?
Perhaps… And what if they did? Then no one would question me on manipulating the system.
I love healthy debates like this and I often question myself to make sure I am doing things for the right reason too. In this particular case I believe I am, but I’m always up for a discussion on a different point of view.
If I lived in China with no democracy then I certainly wouldn’t be having this debate. Even though America has its own challenges, we have the right to debate. It’s a beautiful thing!
At the end of the day, I believe in this motto with all my heart:
“With Adversity Comes Innovation & Change”