big changes loom: what you can do!

It’s a big week for lower limb amputees. The Medicare contractors who published the draft rule affecting (1 ) how amputees receive clinical care, (2) which prosthetic components Medicare will cover, and (3) coding of different prosthetic devices are holding a public hearing tomorrow. In addition, comments in response to this proposed rule are due on Monday, August 31st. If you’re reading this saying, “I’m not on Medicare, so this doesn’t affect me,” think again. Medicare’s coverage requirements form the basis of every major private insurance company’s approach to coverage, so if these changes get implemented, your insurance company will likely adopt them within 12 months!

For the lowdown on what the amputee community has accomplished so far, what’s happening over the next 6 days, and what you can do to make your voice heard, listen to our new Amp’d podcast, fresh off the aural press.

Raising Awareness of the New Medicare Policy: How-To Guide for Amputees

My good friend The Amputee Mommy blogged earlier today about our idea for raising awareness about the draft Medicare policy. It’s pretty simple: record a 10-15 second video of yourself doing an everyday activity; attach that video to a tweet. Here’s a step-by-step guide that we need as many amputees as possible to follow in order to ensure consistency of message:

  1. Pick a basic activity that you do every day (e.g., carrying your child, walking your dog, buying groceries, etc.).
  2. Have a friend or family member shoot you performing that activity on your mobile phone with you near or moving towards the camera. The entire clip should not be longer than 15 seconds.
  3. End the clip by saying, “[insert activity] is not a luxury.” So, for example, if you shot video of you walking the dog, you’d walk towards the camera with your faithful hound and then stop and say, “Walking my dog is not a luxury.”
  4. Open Twitter on your mobile phone and start a new tweet. The camera icon sits below the main message composition box. Select the video you just shot. If it’s longer than 15 seconds, edit it by trimming it down.
  5. After selecting the video, there are 3 components to your actual tweet.
    1. Start the tweet with “@CMSGov”. That’s the Twitter handle for Medicare. We want Medicare to see each and every amputee’s video.
    2. After that, type “[insert activity] is #NotALuxury.” So again, using the previous example, the tweet would read, “Walking my dog is #NotALuxury.”
    3. Finish by linking to the petition asking Medicare to rescind this proposed policy: http://wh.gov/iIIoi

So, the completed tweet would consist of the video you shot, followed by the text in 5.A-C above. Here’s how it looked for me:

#NotALuxury Example

#NotALuxury Example

We’ve gotten more than 25,000 signatures so far, so we’re more than 25% of the way towards our goal! By putting the face of people with limb loss on this movement, we can greatly increase the public’s awareness of the issue and help us get to the 100,000 signature mark by August 30.

We need every amputee to help us get there! Please take 15-20 minutes out of your day and put YOUR face on this important initiative.

Help Amputees Retain Access to Appropriate Prosthetic Care and Devices!

Medicare, through its contractors, has proposed new coverage, coding, and clinical care guidelines that would have a profoundly negative impact on amputees across the United States.

If implemented, the policy installs new barriers that would limit and potentially deny access to appropriate prosthetic care. It eliminates coverage for certain prosthetic devices that amputees depend on for every step they take every day. It even would preclude amputees from getting a prosthetic limb if they failed to meet the entirely nebulous and subjective standard of “the appearance of natural gait” while using the prosthesis.

Chew on that for a second: because some amputees can’t physically walk like an able-bodied person, they can’t get a prosthessis at all? I doubt I’m the only person who thinks that’s outrageous and offensive.

This isn’t a “Medicare-only” issue. Most private insurance companies follow Medicare’s coverage requirements. If this new proposal goes into effect, private insurers will soon adopt those same limitations, and virtually every amputee in the United States will then be subject to this arbitrary and discriminatory policy.

But you can help! As President of the National Association for the Advancement of Orthotics and Prosthetics (NAAOP), I started a “We the People” petition. This online tool, created by the White House “provides a new way to petition the Obama Administration to take action on a range of important issues facing our country. We created We the People because we want to hear from you. If a petition gets [100,000 signatures within 30 days], White House staff will review it, ensure it’s sent to the appropriate policy experts, and issue an official response.”

We’re 6 days in and we’re closing in on 25,000 signatures. It’s a great start, but we’re going to need more help to get to 100,000. I’m therefore asking everyone who reads this post to share the following link with everyone you know and encourage them to sign the online petition requesting that the White House instruct Medicare to rescind the proposed policy:

https://petitions.whitehouse.gov/petition/rescind-medicare-proposal-restricting-access-prosthetic-limbs-and-returning-amputees-1970s-standards-care

It’s a simple process – the petition asks for a few basic pieces of information. After you submit it, you will receive an email asking you to confirm your intent to sign the petition. If you do not get the confirming email, your vote will not be counted, so please make sure to complete that final step.

I’d like to thank everyone in advance for their help and assistance with this critically important issue. Please help me help all amputees – myself included – retain access to the high-quality care and devices that allow us to live productive, healthy, and most important, independent lives.

the annual prosthetic awareness cycle

the annual prosthetic awareness cycle 5.14.15Caroline recently told me that she missed the good old days (she’s 9) when she would help me don my prosthesis most mornings. Technological advances in prosthetic design resulted in my daughter getting obsoleted a few years ago, an event that should prepare her well for working life in the 21st century. Now to be clear, putting on a prosthesis has never been a two-person job. I just enjoyed the fact that Caroline saw herself as an integral part of this daily routine. I don’t think it would have surprised her at all if she had looked at the component list and instructions for use for my prosthesis and seen a picture of herself as “Girl, 5” just below “Allen wrench” and just above “socket valve.”

(Step 7: Instruct Girl, 5 to screw socket valve clockwise into valve housing; Step 8: Instruct Girl, 5 to chase bouncing socket valve across room following unsuccessful attempt to screw it counterclockwise into valve housing; Step 9: Take socket valve from Girl, 5 and screw it loosely into valve housing clockwise; Step 10: instruct Girl, 5, to turn valve one rotation in any direction; Step 11: lavish praise on Girl, 5 for a job well done and screw valve tightly into socket housing yourself.)

Caroline has known no reality other than that in which one of the first things I do every day is put on my leg and one of the last things I do is take it off. It’s all she knows.

Max, who’s about to turn 17, heard Cara talking last weekend about how she had found some old photos of us when we were first married. I could hear the excitement in his voice as he asked to see the pictures, explaining that he hoped to obtain a first-hand view of me with two biological legs. He spoke the same way an ornithologist would if suddenly confronted with the opportunity to see a now-extinct bird. For him, his prosthetic-wearing father is normal, the pre-accident version of me exotic, a stranger.

Jackson thinks nothing of it when I stand at the base of our staircase and ask him to run into my bedroom to grab my backup battery. He passes me the fully charged lithium-polymer power source while I reach up and hand him the dying one. He presses the indicator button after grabbing it from me to confirm that only one of the 5 LEDs remains lit and walks it to my charger, clicking it into place.

I have three children, all of whom have grown up knowing that their dad (a) has never had hair as long as they’ve known him, and (b) has always worn a prosthesis to walk. When they come across old photos of me with two legs, their reaction is the same as when they see pictures of me with hair: “You look so weird!”

But as with all things, context is king.

Last week while I waited for Caroline to finish her gymnastics class, another student walked out of the gym to use the bathroom and narrowly avoided breaking his neck as his body went one way and his head the other as he tried to simultaneously walk past me while looking at the metal and carbon graphite gleaming dully at him below my shorts. If we were able to hack into his neural cortex and determine the precise words formed there but not spoken, our Thought-Translator 2000 would have flashed the words, “He looks so weird!” on its monitor.

My kids and everyone else’s reach the identical conclusion for opposite reasons. Max, Jackson and Caroline can’t imagine me without a prosthetic leg. Other children can’t imagine me with one, even when what they’re seeing eliminates their need to imagine anything.

I have an internal discussion with myself about these thoughts at about this time every year as I transition from 6 months of wearing long pants back to shorts. As sure as leaves turn green on the trees, so too does Spring mark the time when I get jolted into seeing myself through the eyes of people who either have never seen a prosthesis before or didn’t know that I use one.

For children who don’t know me, I’m a guy with a bizarre robo-leg who, because he’s different, is probably a little scary. But for my kids, especially Caroline, I am – or more correctly, my prosthesis is – something to show proudly to her friends. She has a body of knowledge that others don’t. Some kids like to demonstrate mastery by memorizing obscure sports statistics, spouting presidential history facts, or accessing cheat codes to the latest video game so that they can roam entirely realistic fantasy worlds with heads as big as prize-winning pumpkins. Caroline, on the other hand, gives tours of my prosthesis in much the same way guides do in museums.

“Can anyone guess what this button does? Look!” [Presses rotator button and swings my prosthetic knee and foot upside down so that the sole of my shoe is now facing the ceiling. She laughs while her friends try not to freak out.] “Want to see something cool?” [Turns off my prosthetic knee and extracts the battery, brandishing it like a bar of gold in front of her peers.] “Dad, you’re almost out of battery!” [Confidently places it back in the knee with a celebratory flourish.]

It’s a little odd getting objectified by your own child in this way. I suppose if I were wired differently, I might feel a bit like a sideshow attraction at a traveling carnival. Fortunately, she has refrained (so far) from charging admission to meet her dad, so she remains on the right side of the boundary separating interesting from sensational.

Come October I’ll start wearing long pants again and all of this will recede into the background. Until the cycle starts over again next year.

what if … you couldn’t get a prosthesis?

less is more 05.01.15

What if you lost your arm or leg and required a prosthesis? What if you had insurance when that happened? What if that insurance covered the cost of your amputation surgery? What if you left the hospital and looked forward to reclaiming your life with the help of a prosthesis? What if you visited a prosthetist 4-6 after becoming an amputee and were told that your insurance would cover only your initial prosthesis … or no prosthesis at all?

Several states – New York, Alaska, Nevada – either restrict prosthetic coverage to one prosthesis per limb per lifetime (NY) or don’t offer it at all (AK, NV) in plans available on their insurance exchanges. In this month’s Amp’d, The Amputee Mommy and I discuss the advocacy efforts underway in NY. We explain the underlying issues and what amputees can do to make their voices heard.

I was lucky enough to directly participate in some of those efforts in my capacity as President of the National Association for the Advancement of Orthotics and Prosthetics. (For more information about NAAOP generally and how to become a member/support the organization, please click on the link under the heading “Blogroll” on the upper left-hand portion of this webpage. NAAOP needs your support to engage in these kinds of efforts!) And, because like all advocacy efforts, things change fast, I’m happy to have a bit of an Amp’d spoiler alert.

The head of the New York State Senate’s Health Committee, Kemp Hannon, authored a letter just two days ago to the Executive Director of the New York health insurance exchange requesting that she eliminate the one prosthesis per limb per life restriction in that state’s benchmark plan. (When Peggy and I recorded our podcast, this had not yet happened. Click on the following link to read Senator Hannon’s letter: Hannon 1L4L Letter 04.28.15.) Special thanks to Senators John Bonacic, Andrew Lanza, Kenneth LaValle, Jack Martins, Mark Panepinto, and Michael Venditto as well, all of whom joined with Senator Hannon’s call for eliminating the one prosthesis per life restriction.

It’s an important step in the New York State advocacy effort, but it’s only the first step. We have just learned that the deadline for NY to make changes to the benchmark plan is only 30 days away, so much work remains to be done if we are to give NY amputees access to prosthetic devices in 2016.

If you haven’t already signed the petition requesting that NYS legislators take action regarding this issue, join the more-than 13,800 people who have already done so.

Access to qualified prosthetic care is a basic health care right for amputees. For many, it is the difference between living independently or requiring full-time assistance; between living an unhealthy, sedentary lifestyle or a healthy, active one; or between being forced to sit at home and depend on the government for support or rejoining the workforce.

In this month’s Amp’d, learn the dangers of taking this right for granted and how to make sure every amputee has the same opportunity to live a productive, active, healthy life.

P.S. The Amputee Mommy is getting in on the advocacy action as well, as she testifies in Washington D.C. today! Click here to read her pre-testimony post on the subject.

less is more … fitness

04.02.15 less is more ... fitness

Less than a year ago, I wrote about how I had become a “gym person,” waking up at obscenely early hours to get my workouts in every day. But I neglected to pen the follow-up post detailing how I later opted out of gym-person-card-carrying status, probably because I felt somewhat less proud of my slide back into middle-aged, chair-bound sessility. But there you have it – after about 6 months of previously unparalleled commitment to working myself into top-flight shape, I reverted back to the more gelatinous form of humanity depicted in WALL-E.

The transition to endormorph began when I started experiencing persistent pain in my Achilles tendon shortly after I would start running. I went from running 3-4 days a week to having difficulty walking because of stiffness and pain in my tendon. Since I stubbornly refused to engage in any other form of cardio, that left me with nothing to do at the gym except lift weights. While staring at myself in a mirror for an hour a day (surprisingly) didn’t make me nauseous, I found my tendency to want to wear tighter tee shirts profoundly disturbing. While I can’t clinically prove it, I’m reasonably certain that my IQ dropped by a solid 10-15 points for every pound of muscle mass I gained. Intent on preserving my mental acuity – and, perhaps not coincidentally, bored out of my ever-loving skull – I soon let the weight sessions fall by the wayside as well. Before I knew it, I was catching an extra hour of sleep every day and not missing the gym at all.

By last October, I was perfecting my 12-hour consecutive sitting technique while rediscovering my love of ice cream with willfully reckless abandon. I blame that on Caroline. It has always been “our thing” to eat a pint of Ben & Jerry’s Chocolate Fudge Brownie together. In order to maintain those strong father-daughter bonds, I made sure those pints found their way into our freezer with increasing regularity. After all, they seemed to have no effect on Caroline, though that could have something to do with her thrice weekly workouts of 3 hours each at the local gymnastics center. But hey, I was at the same gym with her a few times a week (albeit in a chair, watching her practice), so I figured what works for her would work for me.

My descent towards total physical dissolution continued through the winter. My only exercise from December through February consisted of shoveling snow. I didn’t take Cara’s regular warnings that “people die all the time shoveling snow” as a positive referendum on my overall physical condition. The requisite upsizing of clothes followed soon thereafter.

And then, as I wrote about in my last post, my friend Phil died of a stroke.

*   *   *

When I first became an amputee, Phil taught me that I needed to train like an athlete – intensively and regularly. This wasn’t so I could try to qualify for Nationals and compete in the Paralympics; it was so I could merely live an average life, doing things like walking from a parking garage to the Brooklyn County Courthouse or across a soccer field to watch my kids play youth sports.

One of the unanticipated results of Phil’s passing is that it allowed me to reconnect with an old mutual acquaintance of ours. This friend – Dave – is a PT who has spent a good portion of his professional life donating time free of charge to amputees ranging from first-time walkers to Paralympians. We sat over dinner last week, reminiscing about Phil and talking about amputee rehabilitation, fitness and prosthetic components. Finally, he looked at me and asked, “So, what are you doing now for exercise?” I said, “You’re pretty much looking at it,” and gave him my recent fitness history, starting from the high point last year when I was running regularly and lifting weights at the gym up until the present.

“How’s your back?”

“Not great,” I replied.

“What are you doing for it?”

“What am I doing for it …” I repeated, gazing into the distance before locking my eyes back on Dave. “What I’m doing is experiencing regular back spasms whenever I try to get out of my car or a chair. I wait for them to pass, trapped in anywhere from 3-5 seconds of agonizing pain, bent over, before I can straighten my spine. That’s what I’m doing for it,” I finished triumphantly, a cynical smile on my face.

Dave laughed but immediately turned serious and poked my chest: “You’ve got to take care of yourself,” he said. “If you’re like this today, what do you think it’s going to be like at 60 or 65? If you want to be moving then, you’ve got to deal with it now,” and he reminded me about the need to train like an athlete, just as Phil had told me when I first became an amputee.

By the end of our meal, Dave had volunteered to help oversee my return to a more active life. It started on Saturday with the purchase of a new pair of gel-soled Asics (“It’s all about protecting your sound side!”). I perform mandated crunches, back bridges and planks (“You have to have a strong core.”). I stretch my hamstrings and quad (singular) several times a day. I go on a mile-long walk every other day with a target of getting my heart rate up to a specific range (“No running till you’ve gotten your weight to 175!”). And on off-days it’s resistance bands for strength and flexibility.

Most interesting, Dave wants to make sure that I don’t overtrain: the goal is to get maximum value out of limited exercise time with a long-term view towards making sure that what I’m doing today to get in shape doesn’t destroy my knee, hips or spine by the time I’m in my 60’s. (It’s the less is more (!) approach to fitness.) As I text updates to Dave every day so that he knows I’m complying with his instructions, I’m reminded just how hard – perhaps impossible – it is to walk this one-legged path alone. And I find that comforting. Once again, my prosthesis has (re)connected me to someone. And that reminds me of how many important, amazing people I’ve met because I wear a prosthesis, not despite it.

missing pieces … in 2 parts

missing pieces 03.12.15

This week I’m going to do something different and split my post in half, as there are two totally separate but important topics I want to cover.

1. New York’s limitation on prosthetic limb benefits

As some readers may know, I’m on the Board of Directors of a few organizations in the orthotics and prosthetics industry. One of those organizations – The National Association for the Advancement of Orthotics and Prosthetics (link on the upper left side of this webpage) – recently took on the task of coordinating a response to a New York State insurance restriction that could have a profoundly negative impact on prosthetic-wearing amputees.

As a result of The Affordable Care Act, every state that opted to voluntarily start an insurance exchange is required to select a “benchmark plan.” As the title suggests, the benchmark plan serves as the baseline for what all insurance plans offered through the exchanges must offer as standard benefits.

The good news is that New York’s benchmark plan covers prosthetics. But the bad news is that it covers only 1 prosthesis per limb per life for adults. One and done. And it gets worse.

I went online to see whether perhaps other New York exchange plans nevertheless offer prosthetic coverage that acknowledges the reality that amputees require a new prosthesis due to changes in their clinical condition over time. After all, the benchmark plan is just a minimum standard; an insurer could choose to offer more than what’s in the benchmark if it wanted to.

I limited my search to “platinum” plans, the ones that offer the most benefits. In my zip code, I had 32 possible separate plans offered by 7 different insurers. Here are the results:

  • United Healthcare: 1 prosthetic device per limb per life;
  • Empire BCBS: 1 prosthetic device per limb per life;
  • Emblem Health: 1 prosthetic device per limb per life;
  • Oscar: 1 prosthetic device per limb per life;
  • Fidelis Care: 1 prosthetic device per limb per life;
  • Affinity Health Plans: 1 prosthetic device per limb per life; and
  • Health Republic Insurance: 1 prosthetic device per limb per life.

And it gets worse.

The benchmark plan is issued by a subsidiary of United Healthcare: Oxford. When I co-owned an O&P facility in NY from 2001 -2006, Oxford was the only insurer with a 1 prosthesis per limb per life limitation. And I know from speaking to New York prosthetists between 2007-2014 that it remained the only payer with such a restriction, even after I left the world of patient care. But as soon as New York selected the Oxford plan as the benchmark, all of the other insurers offering plans on the exchange adopted the restriction, effectively universalizing a limitation that had been limited to only 1 payer for at least 15 years.

As an amputee living in New York with more than a passing knowledge of the Affordable Care Act’s requirements, this limitation struck me as potentially violative of multiple provisions in the law. NAAOP agreed and has allocated key resources to coordinate an effort to get this changed. Working with local stakeholders who have donated significant time and resources of their own, numerous lawmakers in Albany are now learning about the 1 prosthesis per limb per lifetime restriction. In addition, there is an online petition that allows people to communicate their outrage at this limitation. In just one week we have secured nearly 2400 signatures, but we need more.

Please make sure that as many amputees as possible go to onelimbforlife.com to sign this electronic petition. We need New York legislators to pay attention to the potentially life-changing damage that this restriction to medically necessary prosthetic care could cause individuals with limb loss living in New York. Thanks in advance to everyone who shares this link!

2. never take anything for granted

I was speaking with a friend on Tuesday morning about the 1 prosthesis per limb per life restriction. As I was getting ready to jump off the phone he said, “I’ve got some bad news for you.” I figured I was about to learn that we had missed something important in the course of developing messaging for New York lawmakers regarding this insurance issue, so I could only sit there for a moment feeling the world rotate oddly around me as he said that Phil Kreuter had died.

A physical therapist, Phil devoted a huge part of his professional life to working with people with disabilities, especially amputees. He was the person who, more than anyone else, helped me see life with a prosthesis as a life full of opportunities. It helped that Phil had a track record that made his words carry extra resonance: he had worked at numerous national and international athletic competitions, including the ’96 Paralympics. He wasn’t just spewing empty words; he had seen it and, equally important, worked with people who had done it.

When I received my first prosthesis, Phil was the guy who trained me, day after day, for months. He taught me what “hop-skip” was. He let me use the treadmill in his facility for 60-90 minutes straight, multiple days per week, long after my insurance plan’s physical therapy benefit had run out, letting me train for free while paying able-bodied patients were there. He accompanied me on my first 10K race a few months after I got my prosthesis, spending 90 minutes on the pavement at a laughably slow pace while giving me water and words of encouragement that carried me through the final miles. He donated time on the weekends to take me to the local track and taught me how to run leg-over-leg in my everyday prosthesis, before I even knew what a running foot was.

As our friendship grew, he loaned me back issues of Tricycle, a Buddhist magazine, as I started trying to gain some spiritual perspective on why I had survived my accident. We spent weekends and evenings talking about starting a not-for-profit that would provide able-bodied and disabled athletes the opportunity to compete against each other. Our theory was that we could fundamentally change the perspective able-bodied people had of people with disabilities.  (A fascinating concept that foundered on the financial reality that the cost of the physical space we’d need to do it far exceeded our respective bank accounts. And, interestingly, a concept that groups like The Wounded Warrior Amputee Softball Team ultimately validated.) I came with him when he taught PT students about treating patients with disabilities so they could see a Real. Live. Amputee. I babysat his daughters once.

Unfortunately, we fell out of touch over the last 8 years. It was nothing personal; events just made it that way. But that doesn’t make his sudden absence any less hard to process.

He was, I would guess, only in his mid-50’s and in great shape – an excellent runner and avid cyclist. So learning that he’d suffered a massive stroke and – like that – was gone, left me feeling a deep emptiness, like I’d lost something vital to who I am.

Cara asked what was wrong on Tuesday night after enduring a day of gruff, monosyllabic responses from me. “Phil was probably the person who had the greatest impact on me during the most important time of my life,” I replied. It seems completely contradictory to miss someone you haven’t spoken to in close to a decade. And yet, when it comes to Phil, that makes sense to me.

So Phil, as I type this and feel the lump growing in the back of my throat, I hope you knew how much you meant to me. I hope you understood – even though you’d deny it if I told you – that everything I achieved after my accident was only possible because I had you there to show me. I was so, so lucky to have you as a friend.

And I’ll miss you.