the amputee bill of rights

In our most recent podcast, Peggy and I share our thoughts about which amputee rights are so fundamental that they should be included in a new amp’d Amputee Bill of Rights. We talk about how this project started, the way in which we came up with the rights included in this document and gave listeners a glimpse into the reasoning behind our choices.

But what we have done so far is only version 1.0 of the Amputee Bill of Rights. In order to finalize it, we are seeking input from everyone in the limb loss / difference world. Our goal is to ultimately publish a document that has feedback from and the support of everyone with less than four complete limbs. So we are asking you – please review version 1.0 and share your thoughts with us.

How do you do that?

  1. Download the amp’d Podcast Summary (Episode 17) and review the amp’d Amputee Bill of Rights version 1.0.
  2. Let us know what you think. What did we miss? How can we improve what we’ve already got? You can reach out to us either by contacting us through our website, or by sending us an email at Either way, please include the words “Bill of Rights” in the subject line so that we can triage responses appropriately.

We look forward to your input. The deadline for submitting your comments is Friday, April 7th. We’ll publish the community-validated/created Bill of Rights the following week.

Thanks in advance for your help! We have already received lots of great comments and can’t wait to get more.

beware the patients!

beware the patients 08.26.14

If there is a Bizarro Earth occupying a parallel dimension, the one place I want to visit while there is a doctor’s office. Only in this twisted alternate reality will I ever experience something approaching satisfaction after pulling my car into a medical complex.

*   *   *

Last Saturday, Max and Caroline had an appointment with the same doctor. Jackson had a separate visit scheduled two days later. None of them had ever seen this physician before, but he was, multiple friends had assured us, “the best!”

The morning of the appointment, Cara directed me to a purple folder with paperwork for each of the kids that we needed to fill out before going to the office. She told me, “I printed them from the website. They were very clear that we need to bring this with us before coming in.”

I looked at the stack of papers and immediately cracked open my laptop. I knew that Cara had prematurely printed out the blank forms, failing to recognize that we could fill them out electronically, saving both us and The Best’s staff valuable time.

I navigated to the website and accessed the forms. I stared at the screen in disappointment. I was staring at pictures of preprinted forms. The only thing you could do with them was print and fill them out by hand. I went back to the purple folder and started writing.

I arrived at the office with all three kids – I figured maybe I could get them to see Jackson at the same time to avoid a separate trip two days later – at exactly the scheduled appointment time of 1 PM. The waiting area, big enough to hold upwards of 25 patients was nearly empty: just a middle-aged man with two kids too young to be seeing this specialist and a woman waiting for her husband to come back out from his patient room. I walked to the front desk where a 60-ish woman with an unsmiling face ignored me for 15 seconds before saying, without looking up, “Sign in.”

I stood for half a second with the 12 pages of information that they had told us to bring on pain of death and contemplated the heavily made-up and garishly lipsticked visage aggressively ignoring me. I signed in and then moved directly in front of Ms. Sunshine to give her the paperwork and make a request.

I waited another 15 second for her to acknowledge my existence in the largely empty environment.

“Yes?” she said, annoyed that someone wanted to speak with her.

“I have the paperwork for the kids here,” I said, handing her Max’s and Caroline’s. She brusquely pulled them from my hand and started to turn away towards her computer.

“I also have my other son’s information here,” I continued. “He has an appointment on Monday and -” She cut me off.

“You hold onto that. I don’t want to get confused if his appointment isn’t today.”

Dismissing the thought that receiving forms the practice requires every patient to fill out shouldn’t ever be confusing – especially since they existed for no other reason than to be physically placed in a patient’s folder – I gamely continued: “Well actually, I was wondering if perhaps he could be seen today to avoid another -” She cut me off again, shaking her head vigorously, exasperated with my stupidity.

“No, we don’t have any time. We close early today.”

I backed away from the reception desk like a camper who has unexpectedly stumbled across the path of a bear. I returned to the kids. Jackson asked, “Will they see me?”

“She’s a total drone,” I replied, not concealing my anger. “We’ll try to make more headway with the doctor.”

Half an hour after the scheduled appointment time, a nurse escorted us to the patient room. This brief illusion of forward progress quickly dissipated as we sat for another 15 minutes.

When The Best finally entered the room, I stood up to shake his hand and introduce myself. He barely glanced at me as he picked up the kids’ newly created files, looked at Caroline and asked, “Ok, so why are you here?”

As I retracted my half-extended arm I realized that he had no intention of telling us his name,  or otherwise engaging in any interaction that would prevent him from exiting the room as quickly as possible. The appointments went by in a blur. The only thing I remember about The Best is that he wore a blue-faced Breitling watch that stared at me with about as much emotion and empathy as its owner. If I witnessed The Best mugging someone in broad daylight and tried to describe him to a sketch artist, I could describe the watch better than I could his height, weight, or face.

By 12:55 I was standing back at the reception desk, Ms. Sunshine gone, staring at a much nicer staffer responsible for scheduling follow-up appointments. I numbly made the necessary arrangements, wondering, “Why would I ever come back here?” as I did so.

“You’re all set,” she said, smiling at me.

“Wait, don’t I have to give you a copay or something?” I asked.

She looked up, startled. “What do you mean? Did the woman at the front desk [Ms. Sunshine] collect any money from you before you went in? If she didn’t, then I don’t think you owe anything.”

“Um. ok,” I replied. “I just don’t want to skip out without making any payments I owe you.”

“Oh, don’t worry,” she said, smiling broadly. “If you owe us anything, we’ll track you down.”

“I’m sure that’s true,” I answered, feeling like this was the only certainty in life as I started walking out the front door.

“Oh!” she shouted after me. “Can you please make sure to push the black door completely shut behind you when you leave?” Before I could answer she reconsidered. “Actually, no, you can leave it. One of our people is coming back – she’ll need to get in.”

Freed from the responsibility of protecting Ms. Sunshine and The Best from an unexpected attack from the outside world, I left.

please sir, may I have another?


please sir, may i have another 6.3.14On May 28, Medicare published a new rule that would require your prosthetist to submit virtually all prosthetic claims for prior authorization. What is that? Why is Medicare proposing this change in policy? What effect will it have on you? We discuss each of these questions in this week’s (longer-than-normal but important) post.

what is prior authorization?

Prior authorization requires you to seek approval from the payer before you can deliver the item. While common among private payers, which usually require prior authorization in order to confirm what exactly this plan out of the 40 offered by this insurer covers, traditional fee-for-service Medicare – a payment system with the exact same coverage for every beneficiary –  has never required it.

In 2014, FFS Medicare, which has always operated under a “deliver and bill” methodology, will provide coverage to 70% of all Medicare beneficiaries. In this system, your prosthetist obtains a prescription from your physician, fabricates your prosthesis and then delivers it to you. After delivery, she submits the claim to Medicare for payment.

why is Medicare proposing this change in policy?

Unlike prior authorization in the private pay world, Medicare’s proposed rule isn’t really about confirming what Medicare covers. Rather, the proposed rule is intended to establish whether the actual claim materials satisfy Medicare’s requirements. Medicare’s logic is simple: (a) its data suggests that its paying for lower limb prosthetic claims that lack required documentation, (b) the current “deliver and bill” FFS system doesn’t allow it to review claim documentation beforehand, preventing it from addressing these inappropriate payments, so (c) “We believe a prior authorization process would ensure beneficiaries receive medically necessary care while minimizing the risk of improper payments and therefore protecting [sic] the Medicare Trust Fund.” While this appears to make sense at first glance, a deeper look at the issue indicates the data on which Medicare bases this proposal aren’t as clear-cut as it maintains.

Just to cite one example out of may possibilities, Medicare contends that 66% of all DMEPOS claims (more on that acronym in the next sentence) failed to meet its coverage requirements. The 66% figure applies to all DMEPOS – durable medical equipment, prosthetics, orthotics and supplies. DME and supplies are things like crutches, canes, wheelchairs, mattresses, and diabetic test strips – devices delivered to Medicare beneficiaries in much larger numbers than prostheses. Because the annual report relied upon by Medicare for this statistic contains no data breaking down prosthetic-specific error rates, it’s hard to know whether improper payments for prosthetics were anywhere near as high as those for DME and supplies.

It’s unlikely that potential data deficiencies like this will derail the push for prior authorization. But when Medicare proposes changes that could have a significant impact on amputees, you would hope that the foundation upon which the proposed rule is built would be rock solid. It’s not entirely clear that that’s the case here.

what effect will it have on you?

From the amputee perspective, it’s hard to find something positive in the proposed rule. The best way to illustrate this is with a hypothetical patient.

Jane is a new amputee who lost her right leg below the knee at age 65 to dysvascular disease. It has been 45 days since her amputation and she has been limited to a wheelchair since the surgery. Her prosthetist has already assembled the necessary paperwork to file her claim and determined that she is ready for delivery of her first prosthesis. Under the current system, the prosthetist obtains a prescription from the physician, documents Jane’s medical need for a below-knee prosthesis, orders the appropriate components, and delivers it to her as soon as he can schedule her for fitting. He then bills Medicare.

Current State Outcome: Jane has her prosthesis on Day 45 and the prosthetist is responsible for ensuring that Medicare pays him.

Now assume exactly the same clinical facts but with Medicare’s proposed prior authorization rule in place. On day 45 Jane’s prosthetist has all the necessary paperwork but isn’t delivering anything. Instead, he’s submitting that paperwork to Medicare for review. Let’s further assume that everything goes perfectly – they get prior approval on Day 55 and Jane receives her prosthesis 5 days later when her prosthetist can first fit her in his schedule. Jane’s absolute best-case scenario is that she sits in a wheelchair until 60 days after her amputation instead of 45.

Whether there’s a material long-term clinical impact on Jane due to an extra 15 days in a wheelchair isn’t exactly clear. We’d probably all agree it would be better for Jane to be in her prosthesis on Day 45 as opposed to Day 60. But under this system, that isn’t possible.

Best-Case Prior Authorization Scenario Outcome: Jane has her prosthesis on Day 60.

Now let’s walk through a more pessimistic – and, based on how Medicare’s contractors have reviewed prosthetic claims over the last 24 months – realistic fact pattern. Jane’s prosthetist submits the prior authorization request on Day 45. On Day 55, he receives notice from Medicare that it has denied his request for prior authorization, saying (a) without a great deal of specificity, the physician’s notes fail to satisfy Medicare’s coverage criteria and (b) he has failed to demonstrate the medical necessity of the prosthetic components prescribed for Jane.

The prosthetist contacts the doctor and gets what he believes to be additional appropriate documentation. He also updates his notes to further justify the components recommended and prescribed for Jane. He submits those for prior authorization on Day 60. Medicare responds on Day 80, informing him that it is still denying authorization because (a) the doctor’s notes don’t specifically state that Jane is “motivated to ambulate” and (b) Jane doesn’t have the functional “potential” to effectively use the components.

The prosthetist resubmits the authorization request a second time, now including a new physician note with the “motivation to ambulate” language included, new physical therapy notes addressing Jane’s functional potential and his own new records. It takes him a bit of time to assemble all this new information, as Jane needs to see the physician and PT, so he sends in the new paperwork on Day 95. On Day 115, Medicare finally approves the claim, and Jane receives her prosthesis on Day 120.

Here, it’s pretty clear that spending an extra 2 months in a wheelchair while Medicare screens paperwork will have both short-term and potential long-term effects on Jane’s rehabilitation. She now hasn’t been upright in 4 full months. She may well have developed a contracture in her knee joint. Her cardiovascular capability has degraded severely. Her sound leg’s muscle tone has also decreased. The chances of Jane becoming the kind of walker that her prosthetist originally envisioned are substantially lower. If she does get back to that level, it’ll take a lot longer. If she doesn’t, we can expect a greater number of physical and mental health issues to affect her in the coming months and years than she would have had otherwise.

Real Word Prior Authorization Scenario Outcome: Jane has her prosthesis on Day 120.

One other point on prior authorization: the system takes the authority for deciding what components are best suited for each individual patient out of the hands of the amputee’s health care team and gives it to claims processors. While Medicare officials might dispute this contention, compared to the current system it’s not even an arguable point.

Today, only the prosthetist and physician decide and document a course of treatment and a specific kind of prosthesis for each patient. The patient receives that prosthesis and the prosthetist must justify what she already delivered. But in a prior authorization world, if claims handlers don’t believe that the items prescribed for the patient are appropriate, they can effectively prevent the patient from receiving them in a timely fashion or, in a worst case scenario, at all. Prosthetists, faced with potentially lengthy delays and a patient who needs prosthetic care more and more with each passing day, may be forced to choose the path of least resistance. They may start putting Medicare patients in less appropriate components to get the prior approval, to provide the patient something.

Whatever the flaws of the current “deliver and bill” model, it has two strengths that prior authorization cannot replicate: (1) the health care team – the group with the best insight into the amputee’s clinical needs – has more control over what the patient gets, and (2) it allows amputees to receive more timely care.


For all the horror stories about (a) national government programs generally and (b) health care specifically, I’ve always taken a  positive view of how fee-for-service Medicare treats people with limb loss. I’ve stated multiple times over the last decade that if I could choose any insurance for my prosthetic needs, Medicare would be close to the top of my list.

Unfortunately, I’m hard-pressed to see how this proposed rule helps amputees, and that’s because it’s really not about helping amputees: as Medicare freely acknowledges, it’s about preventing improper payments. Medicare may accomplish that goal, but there’s really no way to do it in a prior authorization system without putting amputees in a worse position than they are today.

Medicare is taking public comments on the proposed rule between now and July 28, 2014.

If you wish to submit comments so that amputees’ voices are heard in this debate, you can click here to submit electronically. When you get to the webpage, cut and paste the following reference into the large “Search” box in the center of the page: “CMS-2014-0070-0001”. This will lead you to a citation of the proposed rule. To comment, just click on the “Comment Now!” blue button to the right side of the citation.  Alternatively, written/typed comments can be submitted by regular mail to Centers for Medicare & Medicaid Services, Department of Health and Human Services, Attention: CMS–6050–P, P.O. Box 8013, Baltimore, MD 21244–8013.