That’s right, Medicare is broken and not just a little bit either…

In writing this, I want to make something very clear from the start; I’m doing this in hopes of making some sort of positive change, in hopes that a congressperson or a representative, or someone very high up in the Medicare World or Government will read this, feel some compassion and outrage and decide to make a difference. I’m not writing this so that people will feel sorry for me, or to complain, but so that HOPEFULLY someone will read this and try to do something to fix the system.

Medicare is broken when a quadriplegic paralyzed from the neck down has to beg and scratch and fight so hard to get a new wheelchair and then pay over $10,000 out of his own pocket to get one that actually meets his needs.

I’ve been trying to get a new wheelchair for over 6 months, and the latest thing after waiting 4 weeks for a prior authorization is that my paperwork and “medical necessity” was declined because a date stamp was not placed on the paperwork by the Durable Medical Equipment provider.

Does that make sense? Does it make sense for Medicare to look for every opportunity and technicality to deny this paperwork or should they actually be trying to help people and provide them with the equipment they need?

Let me explain my current situation… I’m a C5 Quadriplegic paralyzed from the armpits down, and when I say paralyzed I mean no feeling, no movement, NOTHING. So… I’ve got a pretty major disability, but I’m a young guy, 35 years old who makes the best of life and does a lot. I’m outside a lot, I play with my niece and nephew, I go for long walks with my service dog, I give back to my community, I’m a city counselor, really, I live a pretty awesome, active life. But… being paralyzed, I can’t walk, I can’t move, I can’t get out of bed, I can’t do a lot of things.  And believe me, I hate that phrase… “I can’t”, but it’s true “I can’t” do a lot of things without an electric wheelchair that I can trust and depend on.

And herein lies the problem… My current wheelchair is over 5 years old. It’s so worn out that the actual metal frame, where the seat system connects to the base is broken. The motors are so worn that when I go up the hill to my house from downtown they actually overheat and shut down, sometimes leaving me sitting in the middle of the road. The buttons on the joystick are so worn that sometimes it takes several tries to actually turn my on wheelchair in the morning and there is a giant crack and electricians tape holding them together. And this is what I’m supposed to trust and depend on for my daily life and independence, for my lifeline to the world, to actually keep me safe as I go out into the world.

The safety engineer in me, the normal rational human being in me thinks this is ludicrous, but Medicare has rules and steps and criteria you have to satisfy before they will consider providing a new wheelchair. The first being the wheelchair needs to be over five years old and the second being that it is in such condition it is not justifiable to repair. Well, let me tell you, after 5 years of my very active life and upwards of 10,000 miles my poor wheelchair is so worn out it should most certainly be replaced.

I started the process back in the middle of July, almost 7 months ago, the first step being a face-to-face appointment with my physiatrist for a wheelchair evaluation and to demonstrate need. Surprisingly (*insert sarcasm here) I still need a wheelchair, and this marked the first step where I could now start getting a new one. Little did I know that Medicare starts a 45-day timer from this point that REQUIRES a patient gets a signed prescription for a new wheelchair within this timeframe. Again, Medicare has rules, ridiculous rules.

So now I could start the process, it was time to try out a few wheelchairs and seating systems and find out exactly what I needed and worked best for me. Living in a rural community in Maine it was a little more difficult to actually try out these electric wheelchairs that I would spend over 14 hours of my daily life in so I was at the mercy of my Durable Medical Equipment provider and some of their manufacturers reps to get equipment up here for me to try.

So I had to wait, had to wait 27 days for the first wheelchairs for me to try to show up here. Little did I know, that 27 days of my 45-day window to get a wheelchair were gone just like that. A manufacturers rep from Permobil showed up here with two chairs… The Permobil F3 and the F5. The major difference between the F3 and the F5 being that the F3 is designed around the limitations and funding of the American healthcare system, and the F5 being designed around what the rest of the industrialized world would cover as the best chair for someone in my situation. And I tried both of these chairs out, and guess what the F5 was markedly better, now I’m not saying the difference between the two was night and day, but the F5 had two features that were very important to me; a top speed of 7.5 MPH, and upgraded suspension that made the ride significantly smoother and more capable off-road. And why does that matter? Well my wheelchair is how I get from point A to point B, it’s how I independently get around town, it’s how I’m active with friends and go for walks across the backyard or through the field or to really anyplace outdoors and cool, and it’s how I’m me. That top speed makes the difference between whether it takes 1 hour or 35 minutes for me to get somewhere, and the off-road capabilities whether I spend the afternoon or day by myself stuck somewhere (at very real risk) or find myself seamlessly go where life and my wheelchair takes me.

I immediately fell in love with the Permobil F5 wheelchair and saw the dramatic improvement it would make on my life, and knew from the bottom of my heart it’s what I NEEDED. And this is when I learned more of what is the quagmire of Medicare. Medicare categorizes wheelchairs under “groups”. Group 3 wheelchairs which is what the Permobil F3 is considered are covered by Medicare, Group 4 wheelchairs which is what the Permobil F5 is are not. They are considered as having added capabilities that are not needed for use in the home. So the wheelchair that would make an incredible difference to my independence and freedom is not covered by Medicare.

Think about this, Medicare is completely structured and only cares about providing people with the minimum wheelchair that is sufficient for in-home use.

Even worse, the system groups all wheelchair users together, and the guidelines are structured for geriatric users, older people who find themselves in a wheelchair due to old age, as opposed to looking at the differences and needs of a younger/active user versus an older person who stays at home. So when they look at me as a quadriplegic paralyzed from the neck down they throw me into the same basket as a 90-year-old wheelchair user who needs a chair not because they are paralyzed but because their body is failing them with old age. Does that make sense? Wouldn’t it seem that I, very active and 35 years old and paralyzed from the armpits down, might have different needs than someone who’s much older and less active?

Nope! Well not according to Medicare.

Again, I found the best wheelchair for my NEEDS, but it was not covered by Medicare. I could pay the difference for the upgrades between the F3 and the F5, but at a price tag of over $10,000 I just couldn’t do it, well at that point I just couldn’t do it.

So the search continued on and I requested my DME provider to find me other wheelchairs to try. And guess what I had to do again… wait and wait and wait, finally after 3 postponed trips from the Quantum rep, and over 10 weeks of waiting, I had 2 Quantum wheelchairs to try out. Remember that 45-day window… Unbeknownst to me at this point I had blown way past the allowable window for me to get a new wheelchair. And even worse, after waiting all this time for these new wheelchairs to try out, they weren’t set up for anywhere close to somebody my height or disability. I could barely even sit in them, and after just a short spin around the house and outdoors I quickly saw how insufficient they were compared to the Permobil I had fallen in love with several months prior. Sadly, they felt like toys.

At this point I decided I was just going to bite the bullet, empty my savings, and pay the extra for the wheelchair that met my needs. I called up my DME provider and said I’ll take it, and this is when I ran into Medicare’s foolish 45-day window. After waiting so long (at no fault of my own) to actually try out a few wheelchairs before I committed to spending 14 hours a day in them I had exceeded the 45-day period Medicare allows between the face-to-face with my doctor and ordering the wheelchair. So because of that I could not just simply pay the tremendous price tag and order my new wheelchair, I had to start the process all over again. Now how the heck does that make sense?!? I mean I’m a quadriplegic for goodness sakes, my condition hasn’t changed for almost 10 years, and now I have to see a doctor again, Medicare has to pay for me to see a doctor again, just so I can meet their asinine 45-day criteria. So here I am waiting… You know you can’t just get in to see a doctor at a minutes notice, and I had to wait 4 weeks and fortunately there were enough cancellations that my physiatrist could see me in the middle of December to do a repeat visit of what we had just done in July just so I could buy my wheelchair. That went as expected… Incredible, I’m still a quadriplegic and I still need a wheelchair, and finally we get to the process of submitting our preauthorization paperwork to Medicare so that I could get my wheelchair.

That was at the beginning of January, and after 4 weeks of waiting for Medicare to decide if a wheelchair is medically necessary for someone paralyzed from the neck down I get the big “denial” notice in the mail stating that my “medical necessity” was denied because a date stamp was forgotten by my Durable Medical Equipment provider. I called them up frustrated, and then spent over 6 hours on the phone with Medicare to see if they could expedite the second review. I talked to customer service representatives, durable medical equipment claims advisors, supervisors, supervisors supervisors, and to the very top that I could go and while I did get some compassion along the way, the only answer I got was that I would have to wait another month for them to reevaluate my paperwork. It didn’t matter the urgency of my claim, it didn’t matter the legitimacy of my disability and claim, it didn’t matter that my life will be terribly impacted when this wheelchair fails (and fails again), all that mattered was that the “rules” said they could take upwards of 30 days to evaluate my paperwork. But what about the other 45-day requirement that I get my wheelchair or I have to start this process all over again. I’ve already waited 30 days… What happens if it takes them another 30 days to find that there now is a time stamp and that a quadriplegic actually does need a wheelchair. Do I have to start all over again?

And all this time I’m trying to live a fulfilling life when I have a power wheelchair, a vital piece of my independence and life, that is falling apart.

How does this make sense?!?

And again, I scream at the top of my lungs Medicare is broken!

Medicare is broken when a quadriplegic paralyzed from the neck down has to beg and scratch and fight so hard to get a new wheelchair and then pay over $10,000 out of his own pocket to get one that actually meets his needs.

Now who out there will help me fix it?

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