the ADA explained

 

In this week’s amp’d podcast, Peggy and I take on a law that affects every person with limb loss/difference every day: The Americans With Disabilities Act. The post arose out of questions sent to us by one of our listeners, a bilateral amputee who sometimes uses a wheelchair at college.

In this discussion, we provide a summary of how the ADA protects all people with disabilities (including amputees), take a close look at those portions of the law that have the biggest day-to-day impact on us, and share information about which governmental agencies you should contact if you believe an ADA violation has occurred.

Nearly as important, Peggy and I take a small step towards podcast professionalism with the inclusion of (gasp) intro and outro music on the podcast. The composer of this stunning piece is none other than Max McGill, whose creative juices are apparently in full flow coming off a week spent in early January recording his band’s new EP (stay tuned for more on that in the future). Enjoy!

thanks to my missing limb …

A few days later than I’d like, here’s a quick update about the latest amp’d podcast. In the pod that went live this past Monday, Peggy and I shift away from our more technical discussions about health care reform and advocacy that have formed the basis for many of our recent talks. Instead, we tackle a more free-form topic: those aspects of limb loss that have made us thankful.

It’s a wide-ranging discussion that includes our respective Top 5’s, Peggy and me battling to the death about (un)watchable kids’ shows, and – at the end – unveiling some new tools now on the amp’d website.

Check it out this weekend to fill the hours between now and kickoff Sunday evening!

learn to fly

Check out the latest amp’d podcast to get a soup-to-nuts guide on how to navigate America’s airports if you have limb loss. From booking a flight to navigating security to boarding the plane to arriving at your destination, my talk with Peggy Chenoweth (aka The Amputee Mommy) covers it all.

In conjunction with the podcast, we have also added a new page to our virtual toolkit – Air Travel/TSA – that includes a comprehensive, downloadable tool to make air travel less frightening and easier to handle. It’s a great resource to use both at the planning stages and to have as a safety net while at the airport.

Als0 – a reminder: please reach out to your legislators and share your concerns about what would happen if prosthetics were no longer an essential health benefit or insurers were again allowed to assert pre-existing condition exclusions. Whatever you think of the current healthcare law, the fact that amputees (1) are not subject to annual or lifetime caps for prosthetics and (2) can switch from one policy to another without fear of pre-existing condition exclusions being asserted against them helps improve their access to medically necessary prosthetic care and treatment.

Visit the amp’d website’s Amputee Activism section to learn more about this issue and to access a model letter you can customize and email to your legislators today!

new and improved

 

ampd

As many of my readers know, I have been recording podcasts for the limb loss community for years with my peer and friend, Peggy Chenoweth (the Amputee Mommy). Since my last post in November, she and I have been working hard to expand the resources available to individuals with limb loss and their family members in connection with that podcast (amp’d). This is the primary reason why less is more has gone silent over the last 60 days.

I am extremely proud to announce that the amp’d podcast now has a new online home – www.ampdpod.com. Peggy and I developed the website ourselves and all of the content it houses. Here are the key benefits ampdpod.com offers:

  1. If you subscribe to the site, you will get email alerts every time we post a new amp’d podcast.
  2. It links you directly to the iTunes podcast store if you’d like to subscribe to our podcasts directly through iTunes. (Yes – Peggy figured out how to make us a truly professional podcasting outfit – at least insofar as you can now get our podcasts in the same place that you can also subscribe to the TED Radio Hour, This American Life and Serial.)
  3. Not only can you access the audio of our podcasts on the site, now you can review our written podcast summaries, which are extremely helpful when we are discussing actionable items (like today’s podcast – more on that below). Also useful if you are hearing impaired or hate the sound of my and Peggy’s voices.
  4. Many of our podcasts discuss topics that inherently benefit from the inclusion of related tools that individuals with limb loss can use. So we have created a “Tools” section that includes downloadable resources to help you in selecting a prosthetist, coordinating prosthetic care with your physician, and drafting appeals. We have many other tools in the pipeline that we’ll be podcasting about in the near future.
  5. As of today, there is also an “Amputee Activism” section of the website. This will highlight calls to action for amputees regarding both state and federal issues. Today, January 9th, we have our first call to action on an issue of critical importance to all individuals with limb loss/difference: health care reform. This section of our website also includes numerous downloadable resources that every amputee should familiarize themselves with.

I implore less is more readers to check out today’s podcast, the related podcast summary, and all of the materials in the Amputee Activism section of ampdpod.com. As Congress initiates substantive discussions about repealing the current health care law, there are two issues of particular importance to people with limb loss – essential health benefits and pre-existing condition exclusions – that could have a direct negative impact on all of us if certain aspects of the current health care law are repealed. (As Peggy and I make clear at the beginning of this podcast, we are not pro-Obama or pro-Trump in our discussion of these issues – rather, we are pro-amputee. We will always support any policy/legislation that helps amputees and oppose that which doesn’t, regardless of which party/politician raises it.)

We need the limb loss community to make their voices heard regarding these important issues. Today’s podcast explains them in detail and directs you to resources on the ampdpod.com website that make engaging with your legislators quick and easy. Please join the #DontExcludeAmputees movement today!

Finally, I have to address the future of less is more. I love writing and sharing my thoughts with all of my readers. However, there are certain realities I have to acknowledge: (1) I can record 3-4 podcasts with Peggy on important and interesting topics in the same amount of time it takes me to write a single post; (2) I need to maintain and update the ampdpod.com website on a regular basis in order to ensure that the information there remains timely and useful; and (3) I need to fit everything amp’d-related around my full-time job, which I love. Accordingly, while I will continue writing the occasional less is more post that does a deep dive on an issue that hopefully interests you, the majority of posts you read here in the future will serve to highlight the work Peggy and I are doing with amp’d, as that is where I think I can have the biggest impact in the limited time that’s available to me.

Please visit www.ampdpod.com immediately so that you can take action today! While we don’t know what the future of healthcare will hold over the next four years, the potential ramifications on people with limb loss are (a) far-reaching and (b) could be immediate. So speak up now and use the tools on the amp’d website to help you do it.

Thanks to everyone. Happy New Year, and I look forward to talking with all of you both through the comments here and, increasingly, on www.ampdpod.com – the podcast (and now website) for people with limb loss.

Come Together

Next month I will reach the 20th anniversary of the day I walked into the middle of a busy road to assist a stranded motorist. Crushed between two cars – and without any memory of the accident itself – I awoke in ICU without my left leg. This defining event in my life is something I have come to embrace as an undesired but nevertheless important gift.

And today, just hours after the Bataan Death March of election cycles has come to a close, I believe more than ever before that these experiences offer an opportunity to try to pull together what sometimes feel like the irreparably tearing seams of U.S. society.

Life with one limb has taught me that overcoming adversity is never truly a solo act. For all of my belief – especially at 27 – that I and I alone controlled my own destiny, limb loss showed me how much more I could accomplish when supported by others. Family, health care providers, other amputees – all helped me reclaim both physical and mental pieces of myself. Literally and figuratively, they reconstructed me.

For this to happen, we needed to understand – really understand – each other. We accomplished this by focusing on our common areas of understanding. We built on them, despite the fact that we often had little to nothing in common politically or philosophically. And it didn’t matter. We looked for shared values and reveled in them: helping other people; the importance of family; or even something as benign as a shared love of football (American and European).

Many people I have known for years voted for a different candidate than I did. They feel differently about the United States in 2016 than I do. And yet, I have sat down at a table for a drink with them and had adult discussions about the topic. We have agreed to disagree about certain issues, shaking our heads at each other with a smile as we unsuccessfully tried to push each other towards an alternative viewpoint. And always, we came back to our shared experiences, the things we had in common that transcended whether our view of the world was “red” or “blue”.

I recently had a fascinating political discussion with a close friend who gathers his news from media outlets quite different from the ones I rely on. It eventually became clear that the gulf separating us as we talked about the election arose from the fact that we didn’t even have a common set of facts we could agree upon as a starting point. But the conversation never devolved into shouting or finger-pointing. There were no awkward silences or moments of unspoken reproach – just mutual bemusement at the “same planet/different worlds” nature of this specific aspect of our relationship. We remain good friends today, and there are few people I trust and respect more, our political differences notwithstanding.

Unfortunately, that phenomenon seems to be largely absent from most public political discourse. It feels like we utterly lost key core principles – civility, respect for opposing points of view – during this election cycle.

While returning from a business trip to Holland last month, I got pulled aside (surprise) for a special security screening thanks to my prosthesis. The security official spoke excellent English and asked me my opinion of the pending election. I gave him my answer and he shook his head gravely: “We don’t understand why the candidates have to get so nasty. Disagree, yes. But do it respectfully.”

I have sat in a hospital bed staring at the space where my leg used to be, uncomprehending. I have felt the void of panic and fear that comes from being utterly alone in that moment, not a soul in my world with an ounce of shared experience to offer me. But what my amputation gave me was the opportunity to meet, work with, and achieve things with a range of people I never would have even met if I had two legs.

Before my discharge I asked my health care providers, “What do I need to do?” I wanted to reclaim the entirety of my pre-accident life. Everything. They told me.

With a team around me, I did it. Four months after becoming an above-knee amputee, I was able to complete a 10K road race, wearing a prosthesis custom-fabricated for my needs by a skilled professional, my physical therapist at my side every step of the way, my wife cheering me to the finish line.

If you came away from this election as many Americans did, feeling disgust about the process, the candidates, about the people on the “other side” of the political spectrum, I encourage you to take a breath and stop for a moment. Ask yourself, “What do I need to do?” And do it.

Find someone – better yet, a group of people – to join with as you walk on a path of conscious kindness towards others. Let’s find it in our hearts to be a little nicer, a little softer, a little more respectful of everyone we interact with – especially those who may themselves have low reserves of this skill – as we move into an uncertain future. That’s how you can contribute. That’s what you have to offer. That’s what life with a disability has taught me.

Come together.

 

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.