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.
Powerful blog, Mike. So well written. This is outrageous. Have you contacted Senators King and Collins? Just a thought.
Hey Anne 🙂 that’s the next step! Just wanted to get a few of my thoughts written down on the inter-web and the next step will be to push back against the system and try to get some positive change. Hopefully Senators King and Collins will help. I know them both to be good, caring and compassionate people. Phone calls tomorrow!
I too live in a rural area and understand the need for a heavy duty chair and the extra suspension. Just starting this crazy process. The two chairs I have had over the course of 19 years were/are both Invacare Action Arrow Storms. They are no longer making it and after 19 years, I hate the thought of changing chairs, dealing with the DME provider and Medicare.
Yeah I most certainly feel for you! Every time I go through this whole process it is a complete nightmare. Only thing I would suggest is to really try out a few wheelchairs and get what drives/works best and not let your DME provider push you too hard in any one direction.
Grrrr! This piece has me so frustrated for you I can’t even respond! How can I help?
Thanks 🙂 you should’ve heard/seen me on the phone with Medicare! Talk about frustration. I think I’ve got a few people willing to help today, excited to see if the senator’s office can push this along. We shall see!
Mike I am so sorry you have had to go through this foolishness!! Incredible!! I pray you can get some help from Senator King & Collins! Our health care is in such trouble! Positive thoughts for a good outcome!
Agreed, our healthcare system is a mess! Senator King’s office has already reached out how they can help. Let’s hope there’s some way I can at least speed up the process, and from there maybe open to dialogue on some issues that need to change.
Mike this is so sadly true, and you are not alone. I love how you put this real issue into writing and I’m going to print this out and give to every DME company I work with. If anyone can make a change and bring a solution to this horrible problem, its you!!
I’ve decided I’m going to try at least! And please do share this with every DME you work with, but I suspect they are feeling their own pain, frustrations from customers who are mad at them due to road rocks and challenges caused by the insurance system; multi-$10,000 claims that aren’t being paid by Medicare because they are deemed as not medically necessary after the product has been ordered. I had a very frank and open discussion with my DME provider and it sounds like many DME providers are scared to death to purchase an expensive power wheelchair, particularly when the client has Medicare, because they don’t know if they’ll even get paid. Scary to be fronting the bill for over $20,000 with the hopes that the insurance company won’t deny the claim.
I know it’s not a solution to the system but you might want to try putting up a go fund me page it might help with some of the costs.
Hey Lisa, thanks for the suggestion and it probably would be, but I just don’t feel right about having my friends help me pay for something that the insurance company should pay for. I’ll figure it out and it’ll just make my argument that much stronger for change in the future.
Mike, This is Sondra Siegel from Husson’s PT program. I’m not sure if you remember me, but I was one of Julie’s professors. Your blog makes me was to scream along with you! Please let us know when you’ve contacted Senators King and Collins, and I will be happy to follow up with calls of my own. I imagine I can generate several calls from my current students and colleagues to support your efforts too – the numbers might help to make a difference. I wish you the best of luck.
Hey Sondra, of course I remember you and thanks for the message! I’m currently working with Sen. Kings office so hopefully they will help quickly get this resolved. Unfortunately at this point all they can help with is to speed up the timeline. The broader systemic issues with Medicare and insurance companies will take far more work!
Makes me furious..sure hope King and Collins can help..Count on me contacting them too!!
Thanks Sue! Too bad we need to bug our senators on stuff like this, because one would think they certainly have bigger issues to fix, but at least there is that option!
Hi, I was astonished to hear your story because the timeline and denial reasons were exactly the same for my mother-in-law who had a horseback riding accident at the end of 2015 and is now living with quadriplegia at the C5. Her functionality sounds very similar to yours. It took 6 months after she was discharged from rehab to get her power wheelchair delivered. The DME provider said the same thing about the claim being denied because the doctor had put in the wrong date. Then the doctor was out for maternity leave, so there was more delay. Prior to that denial there was an initial denial saying that there wasn’t enough justification for the power wheelchair. My shock at Medicare denying a power wheelchair for a C5 quadriplegic was….well, very large. Anyway, not coincidentally, her chair was finally approved on September 30, 2016, the last day of the government’s fiscal year. She received it at the end of October and is still working with the company’s technicians to get it adjusted to her needs. I’m so sorry that you went through a similar frustration for something so essential to your living a full life.
In reading this, as you pointed out Medicare, as a governement program, is being age discriminatory. Please write the Department if Justice Civil Rights Division. If that doesn’t work, it may take a lawsuit. Medicaid covers children under 18 and they get whatever wheelchairs they need, but then there is an age gap In need and coverage, like you said, for those who aren’t 90 yard old and confined to an assisted living facility. For relatively “young” adults who lead engaging lives, we have different needs. We are still young enough that the right wheelchair allows us to complete more ADLs independently, creating less of a burden on the government by requiring less aid. The right wheelchair also prevents secondary health issues (joint degeneration, osteoporosis, UTIs) and repetitive wheelchair injuries that can significantly diminish ADL independence and long term burdens on Medicare. For safety alone, the cost benefit to the government makes sense to cover decent wheelchairs.
But the people who decide Medicare rules no longer see it as medical insurance for those with disabilities nor that we live better, healthier lives and pragmatically, less burdensome on the government. In my case,I’m a mom who chases a (very active) kid and like you, the wheelchair gets me everywhere.
That said, I am glad you got the Permobil F5 at a cost of $10,000 and not at its retail price of over $80,000. When Permobil reps told me was that Medicare refused to approve the F5 for coverage, although the F3 and the F5 base and certain components were approved for coverage in 2014 when they were designed. It’s why we end up paying out of pocket for a portion of the wheelchair. But actually thanks to Permobil’s efforts with Medicare, we don’t pay for all of it – some manufacturers wouldn’t have bothered getting partial approval for a chair. Although my other insurance (part of my disability plan from employer)covered the standing option, the seat elevator that is a required option for standing to work, was “denied” by it. I could have claimed it, but was afraid they’d try to rescind coverage of the rest, so I shut up and paid $3,500. By principle, it’s still not right.