Innovation at its best

Prosthetic got you down? Can't do what you used to do? Then invent one that will and share it with the rest of the world. That's what Brian Bartlett did and when I saw this knee, my jaw dropped. I have been frustrated with not being able to ride with both legs. I just take off the knee component and ride with the socket on and no lower leg. Rides are shorter, slower, less challenging and obviously limited to staying mounted. But...with a knee like this...I see no limitations!

Prosthetic Parity in Illinois!

From the Illinois Government News Network comes this press release:

Governor Quinn Signs Law Improving Orthotic, Prosthetic Insurance Coverage
Requires Health Plan Parity for Policyholders’ Benefits, Conditions

CHICAGO – December 13, 2009. Governor Pat Quinn today signed a bill into law that will benefit thousands of orthotic and prosthetic users in Illinois covered by private health insurance plans. The law ensures that coverage for orthotic and prosthetic devices is the same as nearly all medical or surgical benefits.

“Those covered by orthotic and prosthetic insurance policies will get stronger and better coverage that is in line with other medical and surgical insurance benefits,” said Governor Quinn. “This new law should provide a greater degree of financial protection and security to those who depend upon these important devices and to their families.”

In addition, the new law will give more orthotic and prosthetic users access to new, technologically-advanced and well-fitting devices. There are over 69,000 people in Illinois living with limb loss and a comparable number of people living with disabling diseases such as Spina Bifida, Cerebral Palsy and Muscular Dystrophy.

Governor Quinn signed into law HB 2652, which was sponsored by Senator Antonio Munoz (D-Chicago) and Representative Kevin Joyce (D-Worth). The law goes into effect June 1, 2010.

The new law pertains to health insurance plans that contain coverage for orthotics or prosthetics (excluding foot orthotics). It amends the Illinois Insurance Code by adding a section requiring those insurance plans to provide coverage that’s on par with “substantially all medical and surgical benefits” covered in that plan.

The law pertains to health insurance plans covering orthotics or prosthetics that are issued, renewed or delivered six months after June 1, 2010.

Helping to inspire passage of this new law is the family of 14-year-old Allie Johnson, who was born without a right arm. Her insurance company would only cover one prosthetic for her lifetime. Her mother, Laurie -- who for nearly 15 years has worked with Families and Amputees in Motion and is now its president—has spent that last two-and-a-half years working with legislators and other advocates to pass the insurance parity bill.

“This new law is going to help thousands of Illinois citizens. It will improve their lives financially but, just as important, enable many of them to go back to work and contribute to society in general,” said Laurie Johnson.

Other groups and constituents that rallied in support of the Orthotic and Prosthetic Insurance Coverage Parity law include: Illinois Society of Orthotists and Prosthetists; United Healthcare; Tammie Higginbotham; and Douglas Knight, a member of Spina Bifida Association and the National Federation of Independent Business.

Among those joining Governor Quinn at the bill signing ceremony were: Representative Joyce; Senator Munoz; Representative Jim Durkin (R-Countryside), co-sponsor of the bill; Rep Monique Davis (D-Chicago) co-sponsor of the bill; Laurie and Allie Johnson; and Jim Kaiser, a Member of Families and Amputees in Motion.

Dollars and Sense

Here's an interesting viewpoint  that I came across from Hewitt Associates. [Wikinition: Hewitt Associates (NYSE: HEW), based in Lincolnshire, Illinois is a global human resources (HR) outsourcing and consulting firm delivering a complete range of integrated services to help companies manage their total HR and employee costs, enhance HR services, and improve their workforces.]

Since I'm becoming more than a little jaded after a few years of this fight, I didn't expect a favorable view of prosthetic parity from this company but I was pleasantly surprised. They obviously understand the dollars and cents (sense). It's a little outdated in that 17 states have now passed prosthetic parity into law. Nonetheless, it's encouraging that a company of this magnitude, with a primary focus in managing costs, enhancing HR services and improving the workforce, sees the wisdom behind prosthetic parity. Thank you, Hewitt Associates!

Dear Mr. President,

I don't have to say anything. This video says it all.

How the system is supposed to work

Here's a story that's close to home. This is an example of how medicine and prosthetics should work. When you watch the video, you'll see my surgeon and my prosthetist because this surgery was done right here by the same professionals that helped me after my accident.

You can witness the level of dedication and compassion to provide what's best for this young man who loses his arm to cancer. However, he lives in Missouri, a state where prosthetic parity is the law. Discriminating against amputees is illegal here so he will get the prosthesis prescribed by his physician and demonstrated in this video by his prosthetist.

If he were a Kansas resident, his prosthesis most likely would not be covered. If his parents worked for the state, it most certainly would NOT be covered. In Kansas, this would be considered "deluxe, a luxury item that provides comfort and convenience to the amputee and is thereby a non-covered item." In KS, he would get a hook and a socket, a throwback to World War II.

Toto, we're not in Kansas anymore... (thank God!)

Sound familiar?

Just more of the same. When are we going to meet in the middle? People are forced to buy prosthetics off E-bay in the United States? What's it gonna be? Mortgage the house or go to E-bay for a black market prosthetic?

I also saw a headline today that read, "Will amputees soon have access to robotic limbs that give them virtually superhuman physcial abilities?!" Duh. NO. Not when we can't even access 10 year old technology. Plus, if ignorant reporters who don't have a clue how prosthetics compare to a real limb keep putting these kinds of articles out there, the insurance companies will continue to look at anything even moderately "advanced" as something deluxe and "superhuman." Hey, give me "close-to-human" first. Give me a good socket that fits. Here's what I can do with my "superhuman robotic limb." Stand up, sit down, walk well on a perfectly flat surface, step backwards, sideways, carry heavy objects without the knee collapsing and falling down. Walk pretty well on rough surface, cycle, walk at various speeds and walk up and down inclines. Here's what I can't do: Sit on a bar stool, sit with both feet touching the floor, jog or run, feel my foot, ride with the C-leg on, get near water with the C-leg on. Doesn't sound very "superhuman" to me.

Anyway, back to today's video. This is the best technology available and this is one plucky lady. She's a "superhuman" but not because of her prosthesis.

Why you can't get an arm or a leg

I was doing a little reading this afternoon and came across this report from United Health Care. If you're here reading this blog because your insurance has denied your prosthesis, you should read it. While we cheer the success of states who have passed prosthetic parity into law, remember that there are people out there who don't want you to have an arm or a leg. For example:

Iowa
House passes bill that would mandate coverage for prosthetic devices and prevent insurers from offering high deductible health plans. Despite efforts from the business community and insurers, the Iowa House of Representatives voted to mandate coverage for prosthetic devices at the same level as Medicare (HF 311)...

Nebraska
Legislature hears testimony on mandated coverage bills. On February 17, 2009, the Nebraska Insurance Federation and the Nebraska Health Underwriters testified in opposition to three bills mandating coverage for prosthetics to the extent covered by Medicare (LB 149)...

Virginia
Benefit mandate legislation passes. Legislation that passed this session requires coverage for prosthetics... [KFG: Actually, Governor Rell vetoed the bill so Virginia amputees lost out. Much to the delight of the insurance industry I'm sure!]

The insurance industry is well aware of the push for prosthetic parity and is keeping their people busy making sure it doesn't pass. There are some contact emails on the United Health We-could-Care-less-about-you report. Perhaps you might feel inclined to write them a letter!

Wondering where those premium dollars are going? Sending people to the state capitals and congress to make sure you don't get what you need. What's their slogan? "Healing Healthcare. Together." That's a big ol' warm fuzzy, isn't it? Good to know they're looking out for your best interest, 'eh?

But you don't LOOK handicapped?!

When Dave and I went to our annual music festival getaway this year, I was thrilled to bring my little 2-wheeled electric scooter so that I could zip around the festival grounds. This is a huge festival, in the 10's of thousands of campers, spectators, etc., and we like to travel to various camps to play, so walking is out of the question even for the able-bodied, when weighed down with instruments.

I wasn't on the grounds for more than 5 minutes, renewing old friendships when up comes Barney Fife in his golf-cart, telling me that I couldn't ride my zippy little scooter! I said, "Even if you can do this?!" and proceed to unlock my knee, whip the leg around and put the bottom of my foot up to my ear. That little antic awarded me a trip to the security office where 3 Barney's looked over my scooter to be certain that it had a light and turn signals. Once I passed inspection and kept my witty rhetoric to myself, I was permitted to ride around the campground. For reference, bicycles, golf carts and other devices are permitted. My scooter is smaller than my bicycle.

After this interesting diversion, I went back to my friends, shaking my head. Just as I popped open a beer and sat back to enjoy the vacation and good company, up comes the original Barney. "Do you have some kind of thing you can hang on your scooter to show you're handicapped?" he said. I asked him if he would like me to hang a big red "H" around my neck or maybe tattoo it on my forehead? He said that I would probably get hassled less if everyone knew I was handicapped. I politely reminded me that he was the only one hassling me and that the cat was out of the bag.

Herein lies the rub. This is the same mentality that prevents coverage for anything that makes you more "normal," that provides mobility, that makes you more equal to your able-bodied peers. If I had shown up in a wheelchair and Dave would have had to push me around the fairgrounds, up and down the bumpy gravel roads, that would have been OK. After all, I'm handicapped, so act like it! Give me a cute little scooter and suddenly I'm a threat. What? I can't be mobile and handicapped?

Let's take it a step further. It's OK to provide a substandard "basic" prosthesis. I mean, what do you expect? You're HANDICAPPED. Get out the big red "H." Oh, this other prosthesis with all the bells and whistles prevents you from falling, allows you to walk fairly normally without being exhausted at the end of the day? Oh, sorry. We don't allow that. You're handicapped. Get used to it. It's OK to be mobile, but let's not get too mobile, or start acting like normal folk. You're handicapped. Act like it. Accept it.

That mentality creates language like this:

"If you elect to purchase a prosthetic appliance or device with deluxe enhancements or features such as electronic components, microprocessors or other features designed to enhance performance (God forbid we would want to enhance performance for an amputee!), 'the Plan' is only responsible for the amount that would have been allowed for a basic (standard) appliance. You will be responsible for paying the additional cost of the deluxe enhancements, electronic components, microprocessors, performance enhancements, comfort, convenience or luxury items."

Arms and legs are not a luxury. Why, when we can replace amputated breasts without question, when we can provide a penile implant to sire children, why, why, why can we not provide an arm or a leg? No prosthetic limb, no matter how advanced, will ever come close to the real limb. Are we not allowed the dignity of trying to be as normal and as functional as possible?

The festival was in Kansas and the offensive and discriminatory language above is out of the KS State Employee Health Care contract. Unfortunately, this language has not changed and is in the 2010 contract. Nothing has changed. But then again, you're handicapped. Get used to it. Accept it.

Never...

A kiss or a hug?

These two pictures move me in very different ways. On the left, we see Obama hugging Tammy Duckworth, Assistant Secretary of Public and Intergovernmental Affairs for the VA who lost both legs in combat. Click on the photo and you can read the message from the Amputee Coalition of America and the American Orthotic and Prosthetic Association urging us to tell our Congressmen and women to support House Resolutions 2479 and 2575. It boils down to this: Amputees want a guarantee that they will have fair access to arms and legs.

I am firmly behind these bills. We are a technologically advanced nation, yet these advancements in prosthetics are not available to the very people who need them. Everyone "ooo's" and "ahhs" over the coverage on 60 minutes because stories like this give the impression that these technological advances are, and will be, there for me and others now and in the future. Unless these bills pass, amputees will not have access to prosthetics that give us the dignity, comfort and mobility that we need.

Now to the kiss - Here Obama is kissing the woman who is responsible for denying me and other KS state employees complete prosthetic coverage. So...what's it gonna be? The kiss or the hug?

I want to hear from you

Since we're in the midst of the health care debate and prosthetic parity, I would like to hear from amputees about what is or is not covered in their state or in their country. What is it like in Germany, Thailand, Switzerland, etc?

If you live in a state where parity has passed, has it made a difference?

Write by leaving a comment here or write me at katmanjo@gmail.com

Health Care Reform...I want to believe...

The debate is heating up. Every night there is news of some congressman or woman getting jeered and booed over the health care debate. I'm not sure where I fall but here's what I learned over the last year and a half.

I have read many stories about amputees denied C-legs. In nearly every case that dealt with private insurance companies, the amputee was ultimately provided a C-leg. Usually the amputee had to provide proof of need, proof of ability, scientific evidence that the C-leg performed better than the alternative and sometimes they had to drag in a Congressman or State Insurance Commissioner, but in most cases with private insurance, the amputee finally won their case.

My case is different because I'm not dealing with private insurance. I'm dealing with government at the state level. In other words, I see the future and it ain't pretty! I already have government run insurance. A Health Care Commission appointed by the governor decides my fate. They have no obligation to respond to my letters, my requests, my evidence, my Doctor, my proof. They pawn this off on the insurance company that manages the state contract. The neutered insurance company conveys the one syllable communication (NO) but they're powerless puppets of the HCC and they admit as much by saying, "The state calls the shots. They control the purse strings."

The State Insurance Commissioner, the only person with the courtesy to reply, said that they have no jurisdiction over the government run Health Care Commission, and besides, the Insurance Commissioner is also a member of the Health Care Commission. Uh-oh! Fox in the henhouse!

Another State government committee decides that providing coverage for my health care needs will cost the government too much money, so it will not be covered this year or next or the next year unless something gives.

So...How do I feel about government run health care? At the moment, not good. Not good at all. I have ample evidence that they don't provide and they don't respond to need or to evidence based logic.

Still, the "government" provides C-legs for war veterans, Medicare and Medicaid recipients. The State provides for Medicaid recipients too. State Employees just fall between the cracks.

On the flip side, I also don't understand why a computerised knee with a plastic and carbon fiber socket costs more than a car. Why does a bilateral above knee amputee have to come up with $120,000 to walk? A familiar cry is, "Arms and legs are not a luxury!" Then why are prosthetics priced like luxury items? Why are prosthetics priced out of the reach of the very people who need them? Are the materials, the technology really that expensive? I'm sure it cost a lot to research and develop the C-leg, but it's been on the market for nearly 10 years. The R&D costs haven't been recovered yet?

Does the market need more competition? A resounding YES is the obvious answer. Functional, affordable high quality prosthetics. What a novel idea.

Lots to think about...

State Gives Employee the Finger: No Leg

Former Governor Sebelius, now the US Health and Human Services Secretary is making the rounds trying to sell the proposed health care plan put forth by the Obama administration. Now - I'll be the first to admit that our health care system is in a sorry state. I have personally experienced it, ironically, at the hands of Kathleen Sebelius.

For sheer entertainment value, watch the video below and listen carefully to her words. "Excuse me, excuse me. The federal employee health system would stay in place, as would other employer based coverage." Then she waves the microphone around as if to say, "Are you people clueless? Why are all these people booing me?"

I'll tell you why, Secretary Sebelius - because you aren't getting it. Where were you when for over a year, you and your Health Care-less Commission received letters from all over the US and the world asking to provide the same prosthetic standard of care to your State Employees that you provide for the nonworking Kansans? Why did you never respond to a single letter, not even a courtesy call? Why, after all those letters, was the contract language changed to become more arbitrary, exclusive, even denying State Employee amputees anything that might provide "comfort and convenience?" All I asked for, after losing my leg, was the prosthesis that my Doctor prescribed. The leg that would allow me to do my job properly. The leg that our service men and women use, the same old leg that's been around for over 10 years that anyone on Medicaid can get.

What I got instead was the finger.

That's why people are booing, Kathleen. Actions speak louder than your hollow words. I've had a taste of your state employee health system and if all you're offering is more of the same disparity, then you can keep it.

Here's how it's done...

Here's a story about a nice man in Florida who worked for the city for more than 25 years. A little over a year ago, he lost his leg due to an infection. All he wanted to do after that was go back to work, but his city insurance only covered 1/10th of the cost of a prosthetic leg. He spent over a year asking for a leg. He said that the 10 months not working were "tougher than the surgery."

The prosthetic company gave him a leg made out of used parts but it didn't work very well but he didn't mind too much because he could at least return to work.

Then, compassionate people, people who "put themselves in his shoes" stepped up to the plate and found a solution. They worked with the City, looked into the cost for the City and found that to provide this dedicated worker with the proper prosthetic leg, the one prescribed for him, would cost so little that they increased the coverage and this nice man got the proper leg. He is thrilled to be walking and back to work. "It's like going from a Yugo to a Cadillac," he said of his new leg. "I don't even think. I just go."

In stark contrast we have the State of KS Health Care-less Commission, KS Health Policy Authority and Employee Advisory Committee who, after 18 months of wrangling, claim that it will cost the state a half-million dollars a year to provide complete prosthetic coverage for state employees. They're still dodging prosthetic parity and continue to deny "comfort and convenience" for state employee amputees. They say, "You'll get a Yugo and like it" or "You can have a Cadillac without the motor and by the way, your insurance premiums are going to increase next year."

Well, good for you, City of St. Petersburg! Good for you. You found what all the other states that have passed prosthetic parity into law - that it costs literally pennies to keep people active, working and healthy.

A Hopeful Story

Here's an inspirational story about a young man, who after losing both legs, realized that other amputees, especially children, aren't getting adequate insurance coverage. When I read about the 6 year old who was denied an adequate prosthetic - geez - how many stories before we say, "Enough is enough!"? How do these people sleep at night?

A relevant and powerful editorial

A friend of mine, a professional woman and probably one of the most intelligent and logical thinkers that I've ever had the privilege of knowing, weighed in with her opinion about what's wrong with "health-I-could-care-less" today. She has given me permission to post part of her message here:

The whole political system is broken. This isn't about Democrat vs Republican. It's about entitlement vs. greed and outright theft. Both are wrong. Neither one sits well with me. Neither one works for me. Is it somehow inherently better or more noble to be raped by the private health care sector interests than by the government? I don't think so. They're both wrong, and if you actually are a productive member of society in any way you're going to be raped by both. That's what is so wrong, and it's just beginning to dawn on people. It's not just health care. It's everything, and the answer does not lie on either side of the aisle. I don't know who it is, but there's a real Messiah out there somewhere. Whoever he or she is needs to truly speak to and look after the interests of real Americans. Americans who work hard, pay their bills, send their loved ones to war, mind their own damned business and do good works within their sphere. We ARE the majority, but no one is representing us. Not only are we the majority, we are the heart beat of the system and no one seems to get that. The real Messiah will have no agenda beyond the welfare of America, which is as simple as the welfare of the core of its citizens. It's that simple.

Signed,

"A member of the no longer silent majority"

Urgent - Connecticut citizens, ACT NOW!

If you are a citizen of Connecticut go here to get what you need to contact your state legislators. Ask them to override the Governor Rell's veto of HB 5021. Write your governor and ask her to reconsider. Your health and independence are at stake.

Honestly - how incredibly short sighted. Here we have states in dire financial straights, dependent on income tax and yet the governor vetoes a bill that keeps people working, independent and off state Medicaid.

The clock is ticking - turn the tide in your state! One little voice in Kansas is rooting for you!

Virginia Governor Signs Parity Bill and Personal Update

This just in from the Amputee Coalition of America:

Richmond, VA, June 17, 2009 – A Virginia bill designed to ensure fair insurance coverage for artificial arms and legs was signed into law by Governor Tim Kaine Tuesday.

The bill, known as the Prosthetic Parity Act, requires insurers that cover prosthetic care to provide meaningful coverage for prosthetic devices and better care for people with limb loss by creating a consistent standard for prosthetic benefits. This removes special caps and exemptions placed on prosthetic and orthopedic care that made these very basic services cost prohibitive for many individuals. Because of its potential to help people with limb loss keep their jobs, take care of their families, and live healthy, active lives, the bill was strongly supported by the Amputee Coalition of America, the premier nonprofit organization working on behalf of people with limb loss.

“Unfortunately, many amputees have nightmarish stories of fighting with insurance companies to try to get the prosthetic devices they need to simply work and live,” explained Kendra Calhoun, president and CEO of the Amputee Coalition. “People pay their monthly health insurance premiums and expect their coverage to take care of catastrophic situations like losing a limb. This is the very reason people purchase health insurance.”

Senate Bill 1116 was introduced by Senator Patricia Ticer (D) with delegates John O’Bannon (D) and Lee Ware (R) sponsoring in the House. It was passed in the Senate by a vote of 33-7 on February 3. It was then passed in the House unanimously, 99-0, on February 24. Sponsorship of the bills was bipartisan.

When Susan Bailey became infected with E. coli bacteria that ultimately resulted in the amputation of both her legs above the knee in 2007 at the age of 23, Virginia didn’t have a law ensuring that she would receive meaningful prosthetic care. Because no law was in place, she ran into problems with her insurance company when she wasn’t able to get the prosthetic legs her doctor recommended. As a mother of two, Susan was given above the knee prostheses that didn’t allow her to walk up and down stairs, let alone keep up with her children. Susan had been paying her insurance premiums and expected to be covered adequately to allow her to get her mobility back.

“Thanks to the leadership of the Virginia General Assembly and Governor Kaine, people with limb loss in Virginia can now get the care they need to get back to work and live independent, productive lives,” said Morgan Sheets, the national advocacy director for the Amputee Coalition. “Spread across the insurance pool, the cost of prosthetic care is less than a dollar per month. Because of the lack of productivity caused by inadequate prosthetic care, the cost to the healthcare system in the long run of not providing prosthetic care far exceeds that of providing it.”

**************

True, true. What does one do in the face of such logic? The right thing or continue to turn a blind eye? If you are a member of the KS Health Care Commission, KHPA or a KS Legislator - you continue to ignore the issue and hope it will go away.

So...a lot of people have been asking how I am since paying half my take home salary in 2008 for medical expenses. I'm financially poorer, physically and mentally richer and immeasurably more savvy about "health-I-could-care-less" insurance.

I got a new socket a few months ago because my residual limb bulked up when I started walking with the C-leg. I'm trying out a new suspension system. When it's good, it's SO good. Quick, responsive - I almost feel like my old BK self. Funny how your confidence soars on these days. I feel strong and invincible. Then there are days that I can't explain - I just can't seem to get the socket right, I lose suspension and am constantly fighting the thing - like a grocery cart with a bad wheel. However, the good days are starting to outnumber the bad and compared to where I was a year ago, it's remarkable. With the new socket and suspension system, I don't lose circulation in my residual limb, don't have the painful muscle cramping and now I can walk all the way across campus and back. It's been nearly two years since the accident. My inability to walk properly that first year thanks to the "basic" prosthetic provided, cost me a lot.

Now I discover that I have significant osteoporosis in my remaining femur from lack of proper weightbearing. The rest of my bones are in great shape, but my right femur is pretty scary looking. Once again, this points out the importance of the C-leg which has been scientifically proven to reduce falls and increase mobility. I will do everything in my power to rehab this bone, since it's the only joint left that's keeping me mobile, on two feet, but imagine where I would be if I were limited to the "basic" prosthesis provided to State Employees? Probably in the hospital with a hip fracture and then to a wheelchair with costly, secondary physical complications. It's crazy making, isn't it?

If I were a pony, or an elephant, or a lizard...

If I had watched this video a year ago, like most people I would have thought, "Wow...isn't that something?! It's a miracle how far prosthetics have come!" When I watch it now, I just chuckle and shake my head. First, the C-leg microprocessor technology is over 10 years old. Second, every time the patient says how comfortable he is with the C-leg I cringe! Don't let them hear you say that it's comfortable or worse yet, convenient! Comfort and convenience are exclusions here. Third, I don't know what planet they live on, but the reporter says, "Insurance companies are now covering the cost." 'Eh... no...

I heard about a couple of other cases here that are so outrageous it just makes a person question their sanity. What makes human beings so inspired when they see an animal with a prosthesis, like Molly the Pony or a baby elephant with a prosthesis, yet we deny amputees the dignity of a limb? I've become so jaded after hearing story after story of people who are denied a medically prescribed prosthesis that I envy Molly and Chhouk - they receive better prosthetic care than a lot of people. For example, one story I heard was about a person who lost their leg at the ankle. They received a prosthesis but complications developed and the leg had to be amputated again, this time right below the knee. After recovering from the 2nd amputation, the insurance company denied a new prosthesis because 2 years hadn't passed since receiving the 1st prosthesis! Nevermind the facts - that the 1st prosthesis was designed to fit the part of the leg that was amputated - denied.

Ah, if only we were lizards and could regenerate our limbs.

Waymon Tisdale Remembered

I was deeply saddened to hear the news of the death of Wayman Tisdale. He was a musician, basketball star and amputee with an incredible spirit and generous heart. After his amputation, he set up a foundation to help children and families whose prosthetics were not covered by insurance. He was a bright, shining star - a beautiful example of courage and grace.

Show Me MO!

Makes me proud to live in Missouri! MO is the 6th state to pass prosthetic parity legislation since the beginning of the year. Read about it here! Great planning too - either opt in or out of prosthetic coverage for $4.00 a year.

WOW! Parity is on the move!

While I was focused on the lost cause of KS, Texas passed prosthetic parity into law! That makes 5 states just this year! (VA, MD, AR, IA, TX) That's incredible. It's time to focus on the national parity bill and stop beating a dead horse. The Amputee Coalition of America has a nice new website for the parity campaign. Check it out here.

KS State Employees - Read this Now!

KHPA met with the EAC on March 4th to discuss adding electronic components to the State Employee Health Care Plan. Remember, KHPA does cover electronic components to State Medicaid recipients. This discussion is limited to the few State Employees that might require a prosthesis with an electronic component. You can read the memo here. When you read this memo, you'll also get a feel for the issues surrounding prosthetic parity and why we have to pass laws saying prosthetics should be covered like any other medical expense.

They have determined that it would cost the state $500,000 per year to cover electronic components for State Employee amputees. Their actual cost for my C-leg would have been $15,000 so this isn't adding up. If we use the State's predicted cost and divide it by the actual cost, we can assume that there are 33 State employee amputees that meet the qualifications for an electronic prosthesis. As far as I know I am the only squeaky wheel, because I've never heard about another State employee in this same predicament. Even so, let's pretend that there really are 33 eligible amputees employed by the state that are simultaneously prescribed and meet the requirements for an electronic prosthetic component in Year 1, costing the State $500,000. This is the predicted annual cost so in order to meet that requirement, another 33 amputees would have to show up year after year because the components last about 5 years. Catch my drift here? Those 33 would have to show up all in the first year to cost $500,000 and then what? Either another 33 show up the next year to cost the State another $500,000 or we take those figures and spread them out over 5 years for $100,000 a year. Of course, there may be costs for repairs, but we all know that there are not 33 State employee amputees clamoring for electronic components and this number is not going to multiply year after year. Bottom line? Totally bogus.


But, while we're in fantasy land, let's just say that this cost really is $500,000 a year. What would it cost the insured State employees if all the costs were passed on to them in the form of a premium hike?

There are roughly 90,000 State employees so 500/90 = $5.55 a year or 83 cents a month. Or, if we use the more realistic figure of $100,000 a year that's 9 cents a month. The insured State employees would have to pay somewhere between $0.09 - $0.83 a month to cover the cost of electronic prosthetic components for these imaginary 33 State employee amputees.

Just for fun, let's pretend I'm the only amputee in the State asking for the same prosthetic benefits that KHPA provides KS Medicaid recipients? What would I cost each and every KS State employee? The cost of my C-leg would have cost the state $15,000 and it's predicted to last 5 years so that's $3,000 per year. $3,000/90,000 employees = 3 cents per employee per year. Yes, that's what we've spent the last year arguing about - three pennies.

Premium hikes are a sore topic for KS State employees because they've been on the rise and are increasing even more next year, significantly more than $0.83 a year. Oh well, the people making these policies are KS State employees too. I doubt things will change unless a) a KS legislator steps up to the plate b) the federal prosthetic parity bill passes or c) one of these policy makers loses a limb and then comes face-to-face with the issue of parity.

Grades for KS Health Care

I have been approaching this issue with a sense of humor, often laced with a little sarcasm, but tonight I'm just weary. It's been an exceptionally long day and I think I'm not only tired but terribly disappointed with bureaucrats, administrators, senators, commissioners, governors and just people in general.

The second appeal is final. It took 69 days for them to say "no," employing the same rationale, that is, electronic components (the C-leg and anything with a battery) are excluded. No explanation why, no explanation why amputees are the only group singled out with an "electronic exclusion" just, "Because we said so." That worked with me when I was 2 years old. It doesn't now. Decisions are based on reasoning.

Despite all the BS I was fed when they got wind of the Call for Action Report, the discriminatory and insulting language regarding insurance coverage for amputees will be left in the 2010 State Employee Health Care contract. The state will continue to practice disparity by providing proper care for amputees who are State Medicaid recipients, but not for their State Employees.

We did what we were told. We contacted the benefits office, BCBS of KS, then KHPA, then the KS Health Care Commission and the Governor. We talked to Senators and Representatives. Here's the breakdown:

Congressman Dennis Moore: They gave it a good run but got nowhere. Congressman Moore has yet to co-sponsor the federal prosthetic parity bill. I'll give him an A for effort and a C for not co-sponsoring the bill. Come on - step up to the plate and make a statement!

Former Governor Sebelius: Never responded to a single letter. She is now Secretary of Health and Human Services. She gets an F for failing to respond. I thought health care was a priority of the Democrats?

BCBS of KS: Please... they just wave their hands around and say they're not responsible for anything, they just administer the contract, take your questions to KHPA, it's not us, there's nothing we can do, we just handle the paperwork. They really are "just the messenger" so it's not fair to grade them on anything except their handling of the paperwork and communication which is, frankly, dismal. They get an F for communication in writing and a B for phone communication. There are some compassionate individuals there who clearly grasp the situation, but there's nothing they can do.

KS Health Care Commission: Never responded to a single letter. They get a resounding F for not recognizing the disparity, for not being outraged that State Employees aren't getting the standard of care and for lack of simple common courtesy.

KS Health Policy Authority: Responded immediately and favorably only when there was media pressure. Presented a good case to the HCC in February to change the contract language. I'll give them a B for their effort and understanding the disparity between State Employee benefits and State Medicaid Benefits but an F for not telling me about the Employee Advisory Committee.

EAC - who is the EAC? Good question. I'm just now hearing about them. Apparently, they are responsible (according to KHPA) for recently advising HCC not to change the State Employee contract language. I can't grade them because I don't even know who they are or how they based their decision.

When it comes to health care for working amputees, the State gets an F. There is so much finger pointing and lack of accountability that it becomes impossible to sort out why they choose to neglect their State employees and who is responsible. Maybe the new governor will be more responsive.

If are a KS State employee, or an amputee that has faced similar discrimination, contact me at katmanjo@gmail.com. I'm not giving up until we end this disparity.

More State Victories!

HB 2244 was signed into law on April 6, 2009 making Arkansas the twelfth state to make prosthetic parity law! In addition, SB 1116 passed out of the Virginia House and Senate, as did SB 341 and HB 579 in Maryland, and HF 311 in Iowa.

So...Missouri, Iowa, Arkansas (a state with the word "Kansas" in it - we can dream, can't we?) and Colorado have all passed or are about to pass parity laws. Nebraska has legislation in place, Oklahoma and Kansas are still at stage zero with no one sponsoring a bill.

Prosthetics on 60 Minutes

Prosthetic advancements were featured on 60 minutes recently. These stories, while inspiring, do not expose the dirty secret, that those amputees who work, have insurance and pay taxes will not have access to modern technology. Heck, the C-leg is something like 10-15 years old now - ancient by technological standards - but still more than the Health Care Commission can wrap their head around. Until either the cost of prosthetics decrease or the parity bill passes, these kind of advanced prosthetics will not be an option for the average working stiff.

What's wrong with this picture?

State Updates

Iowa: Passed House and Senate, on its way to the Governor. Yeah!

Texas: Passed out of the House (105 yes, 35 no), on its way to the Senate. All 35 "no" votes were from Republicans who oppose the bill based on their philosophy that government shouldn't meddle in private affairs. Well, if someone had been paying attention in 2000 when insurance companies pulled a fast one it wouldn't have come to this, would it? See my previous post on mandating fairness.

Utah: Rep. HB 89 passed the House but never got a Senate vote. The bill would have affected up to 7,000 Utahns who need prosthetics. The sponsor of the bill, Rep. David Litvak (D-Salt Lake City), was told insurance companies won't offer coverage because the pool of users is too small to make it worthwhile.

Hey, "Peg"...How does that make you feel?

Think about this - the "pool of users" are the hard working, tax paying and premium paying customers of insurance companies that refuse to cover prosthetics. Prosthetics promote ABILITY. The ability to work, stay active and healthy and continue contributing to society you stupid, incredibly short-sighted pack of nincompoops! But then, we're not worth bothering with, are we? Don't these 7,000 people in Utah vote? I hope every single one of you is paying attention and make your voices heard. Gather up your friends, families and supporters and go march on the Capitol. Each one of you write a letter and have all your friends write too. "Too small to make it worthwhile?!" Utah advocates - put that phrase on your T-shirts and go make a scene!

The Missouri Prosthetic Parity Bill (HB 616) passed out of the House Health Care Policy Committee unanimously (10-0) on April 1st

It's not an April fools joke either! Amazing that these bills are consistently passing unanimously, isn't it? This bodes well for the federal bills. So, ironically, Missouri is about to make it illegal to deny coverage for prosthetics. I live in Missouri, but I work for Kansas, so I'm still stuck. But, wonderful news for amputees in Missouri that have been doing without for so long!

Is your Representative or Senator on this list?

There are two federal bills for prosthetic parity:

1. House Resolution 5615 (HR5615) sponsored by Representative Robert E. Andrews [NJ-1]with the following cosponsors:
Rep Braley, Bruce L. [IA-1] - 5/13/2008
Rep Carson, Andre [IN-7] - 4/30/2008
Rep Clay, Wm. Lacy [MO-1] - 6/18/2008
Rep Coble, Howard [NC-6] - 9/9/2008
Rep Courtney, Joe [CT-2] - 9/23/2008
Rep Diaz-Balart, Lincoln [FL-21] - 3/13/2008
Rep Diaz-Balart, Mario [FL-25] - 3/13/2008
Rep Doyle, Michael F. [PA-14] - 6/18/2008
Rep Filner, Bob [CA-51] - 5/19/2008
Rep Fortuno, Luis G. [PR] - 9/15/2008
Rep Giffords, Gabrielle [AZ-8] - 7/10/2008
Rep Grijalva, Raul M. [AZ-7] - 5/19/2008
Rep Holden, Tim [PA-17] - 11/19/2008
Rep King, Peter T. [NY-3] - 5/7/2008
Rep Lowey, Nita M. [NY-18] - 7/10/2008
Rep Maloney, Carolyn B. [NY-14] - 6/18/2008
Rep Miller, George [CA-7] - 3/13/2008
Rep Nadler, Jerrold [NY-8] - 6/18/2008
Rep Payne, Donald M. [NJ-10] - 6/12/2008
Rep Petri, Thomas E. [WI-6] - 12/9/2008
Rep Platts, Todd Russell [PA-19] - 3/13/2008
Rep Ryan, Tim [OH-17] - 10/2/2008
Rep Terry, Lee [NE-2] - 9/16/2008
Rep Tierney, John F. [MA-6] - 9/9/2008
Rep Van Hollen, Chris [MD-8] - 9/23/2008
Rep Wamp, Zach [TN-3] - 6/18/2008
Rep Waters, Maxine [CA-35] - 6/18/2008
Rep Welch, Peter [VT] - 6/18/2008

See any representatives from KS or my representative from MO on this list? Hmmm...?

The Senate bill (S.3517) was sponsored by Olympia J. Snowe [R-ME] with the following cosponsors:

Sen Casey, Robert P., Jr. [PA] - 9/25/2008
Sen Feingold, Russell D. [WI] - 9/18/2008
Sen Harkin, Tom [IA] - 9/18/2008
Sen Inouye, Daniel K. [HI] - 9/18/2008
Sen Leahy, Patrick J. [VT] - 10/2/2008
Sen Sanders, Bernard [VT] - 12/11/2008

If you don't see your Senator or Representative on this list, take action now. Call, write, email, fax, whatever you need to do. The Amputee Coalition of America Advocacy Center has some good sample letters and links at the bottom of this page.

Trying to attain normalcy...

A few weeks ago my coworker Lori and I were out and about when we spotted a security guard on a Segway. I commented how cool that would be for the disabled, that they wouldn't be in a wheelchair, looking up at everyone, that they could be at eye level, moving along smartly and feeling "normal." Wondering if there were Segways for the disabled, I ran across this article.

I didn't feel good after I read it, in fact, I felt sickened. Why? Because it's another example of limitations for the disabled. See, everyone cheers if you beat the odds, perform amazing feats, but try to blend in and just live a normal life without wearing the big blue "D" on your chest, or try to use a mobility device or prosthetic that gives you an "advantage" (ha - advantage - how funny is that?) and you can find yourself in the situation this man did.

When I was between legs, waiting to see if my knee would heal, Dave made me a decoy leg out of Pringle's cans. I found that if I wore the decoy leg and used crutches, that strangers would joke with me and my co-workers felt more comfortable because a "broken" leg looked more "normal." Without the Pringle's decoy, people would either look the other way, avoid me altogether, or, worst case scenario, the other extreme - go slack-jawed, stare, point at the offending missing limb and blurt out, "What happened there?!" If this happens to you, be sure to quickly turn around and shout out, "Where?!" This should start an interest exchange of "Where?!" "There!" "Where?!" until you look down in horror and discover that your body part is missing whereupon you shriek in horror (don't hold back!), "Oh My GOD-MY-LEG?! WHERE'S MY LEG?!" then, as dignified as possible, walk off and leave them basking in their own stupidity and ignorance.

Anyway, give the article a read when you can - it's insightful and very well written.

Breaking News About Federal Parity

Washington, DC, March 11, 2009 - On Tuesday, March 10, the Amputee Coalition of America had nearly 200 amputees and patient advocates from 34 states in Washington, D.C., to urge Congress members to support fair insurance coverage for artificial arms and legs. Their message was simple: Arms and legs are not a luxury!

These citizen lobbyists made this trip to tell lawmakers that they need their own “bailout.” Many of them have nightmarish stories of fighting with insurance companies to try to get the prosthetic devices they need to work and live.

“Insurance companies are unrealistically limiting reimbursement of prosthetic arms and legs or summarily electing not to cover them at all,” said Kendra Calhoun, Amputee Coalition president and CEO. “We intend to turn this tide, and this event is a great example of the grassroots support we have from across the country to do so. Arms and legs are not luxury items. Mobility is a serious issue for amputees who want to keep their jobs, take care of their families, and live healthy, active lives.”

Jeffrey Cain, MD, is a bilateral lower-limb amputee and a member of the Amputee Coalition’s Board of Directors and Medical Advisory Committee. Dr. Cain is an excellent example of how prosthetic devices can help amputees function in their daily lives and contribute to society rather than become dependent on it.

“Being able to have prosthetic devices means that I can take care of my patients and teach medical students,” said Dr. Cain.

Unfortunately, working people with employer-provided health insurance plans are often the ones with the biggest problems, Dr. Cain noted. “Because employer-provided insurance plans are increasingly introducing unreasonable limits and caps, if you have a job in America – if you are a hardworking member of society – you can’t afford a leg to stand on. It’s gotten that bad.”

In fact, some insurance companies are providing coverage for only one prosthesis per lifetime or eliminating coverage completely.

“Even for older adults, it is absurd to expect them to use only one prosthesis in their lifetime,” Calhoun said. “No one would expect a person to wear a single pair of shoes their entire life, and prosthetic devices should be no different.”

These types of insurance company practices pose especially grave challenges for families of children with limb loss.

Rick Castro, of Connecticut, took two of his children to the event because he wanted to try to get better prosthetic coverage for all families, including his own. Castro’s 4-year-old daughter Jennifer was born missing part of her arm below the elbow, and Castro is well aware that, as she grows, she’ll need several highly expensive prosthetic devices.

“When people find out that their insurance company doesn’t provide fair coverage for prosthetic devices, what do they do?” asked Dr. Cain. “They mortgage their homes, raid their children’s college fund, go into debt, turn to government programs for assistance, or are forced to have bake sales to try to pay for these medically necessary and often very expensive devices. That’s pretty sad, especially when they’ve paid their insurance premiums for years for this very purpose.”

David Ross, of New York City, lost part of his right hand and his right leg above the knee after he was mugged and thrown in front of a subway in 1997. He’s seen what happens when amputees have to settle for devices that are not really what they need because of the limitations in their insurance policies, and that’s what brought him to Capitol Hill.

“It’s so unfair that prosthetics are not covered by health insurance plans to the same degree that other conditions are,” Ross said. “It’s a shame that a lot of my fellow amputees who have already had to get over a traumatic accident or being born without a limb have to fight for something that should already be included in their insurance policy.”

Robert D. Doty, Jr., MD, who lost his left arm as a result of a car falling on him, has had problems with his insurance company not understanding – or not acknowledging – his prosthetic needs.

“My carrier did not want to cover a body-powered prosthesis after covering a myoelectric prosthesis,” Doty said. “The company said that one prosthesis is as good as another and that they can do the same thing, which is not true. I can’t do anything around water, liquids, chemicals or heavy machinery or do any heaving lifting with my myoelectric prosthesis without damaging it. It’s great for doing fine, precise work, but if I’m going to be doing heavy lifting or working around water or liquids, a body-powered prosthesis is better. I really need both.”

As these nearly 200 citizen lobbyists hustled from office to office, they made it clear that they want change. In a single day, they made more than 60 Senate visits and more than 100 House visits. In addition, 26 organizations, including disability rights groups and O&P [orthotic and prosthetic] professional organizations, have now signed on with the Amputee Coalition of America to help move this legislation forward.

“We are thrilled with the results of the day,” said Morgan Sheets, the Amputee Coalition’s national advocacy director. “We are already hearing from House and Senate members who are interested in co-sponsoring our bills and supporting our efforts for fair coverage of artificial arms and legs. The turnout exceeded our expectations, and the great enthusiasm of the participants has certainly encouraged us to continue this important fight for fairness.”

Hmmm....

It's against the law now in 11 states to restrict prosthetic coverage. Leglislation is pending in 30 more states. That's 41 states in which legislation is either pending or passed. That leaves only 9 states in the dark and the Governor of one of those states is President Obama's choice for the Director of Health and Human Services. I've been reflecting on the appointment of Governor Kathleen Sebelius to Director of Health and Human Services for the last few days. It's weirdly ironic, that's for sure. Honestly, I don't know how I feel about it. Problem is, I'm trying to form an opinion with no evidence from the Governor or her appointees to the Kansas Health Care Commission that they really care about the issue of prosthetic parity because...well...frankly, because neither the Governor or her appointees have responded to a single letter that we've written. On the other hand they are considering changing the 2010 state employee health care contract. Ask me again in May when a decision is made on the contract. Ask me again when the Federal prosthetic parity bill gets sent to HHS.

News from other states:

Utah - the House has passed a prosthetic parity bill. Opponents complain saying, "We won't have a market driven health care system." R-i-g-h-t. Market driven. I'm going to stop here before I say something profane. The cost? 18 cents per policy holder. "OOoo...I don't know. Should I get the policy with or without the prosthetic coverage in case I should have an accident and lose a limb or should I buy a chicklet?"

Virginia - SB 1116 was passed by the Virginia House on a 99 to 0 vote. There is one more bureaucratic step to make sure the Senate agrees to move the House version, but the bill should be on its way to the Governor's desk very soon. *UPDATE* The bill passed the House and Senate!

Maryland - (video)

Missouri - On March 10, 2009, the Missouri Senate Committee considering the Prosthetic Parity Bill voted unanimously (7-0) to pass it! It still has to pass the House committee and then the full House and Senate but this is a great start and speaks to the soundness of the bill. GO Big MO!

Kansas - Prosthetic parity? Here's an old fence post and a paring knife. Get to whittlin' there girl!

Visitors from the Other Room

Welcome - Seriously, you are welcome here. So, while you're here checking me out, let's chat a bit about how we got to this point and why I feel so strongly about this issue.

Sometime in the late '90's insurance companies started to discontinue or severely limit prosthetic coverage with total disregard for transparency. It's easy to see how this slipped under the radar for a while, but then came the outrage.

We all know the importance of having health insurance. We pay premiums so that, in the event of a catastrophic illness or injury, there is a safety net. For amputees, some joker moved the net at the last second. Many people have to resort to loans, dipping into dwindling retirement savings, a second or third mortage or just doing without. Think of the trickle down effect this has on the economy and the long-term effects on health. It doesn't take a rocket scientist to figure out that I will generate more revenue for the state if I continue to work and stay active vs. going on the public dole and getting the proper prosthesis from state Medicaid. That's what's so crazy-making about all of this! It's this short-sightedness that has adds to the fiscal mess that's currently unfolding. Those states that have already passed parity laws have come to this realization.

So how did these parity laws come to be? How do insurance mandates happen? Sure, folks would like to blame the outraged amputee, the one-legged whiner stomping their singular foot - but - frankly, you brought it on yourself. When private insurance openly practices discrimination, you may save money in the short haul, but in the end, laws will be passed to mandate fairness.

Mandate fairness. It's kind of sad, isn't it?

More Obstacles

BCBS of KS sent me a letter last week saying they would expedite my second level appeal if I would "respond to this inquiry and send your reply to the expeditor." What inquiry? "This" inquiry. Was there a question, a query, a search for information or the truth? No. Word for word, that's what it said. I tried pressing the letter to my forehead but my Carnac the Magnificent skills have been lacking of late.

It's moot anyway when you consider the State of the State. (click link to read article and see video) There are some interesting numbers in this article - KS has the worst benefits dollar-for-dollar, 40th in the nation for pay and there's a State Employee Union? I didn't know that! Now there's talk of not getting paid. This looks more like attention-getting political wrangling but I'll let you know on Friday.

Fighting for parity is hard enough but during a recession is nearly impossible. It seems every small gain is countered by a mammoth setback.

A trip to Topeka

I went to Topeka, KS today to attend a meeting of the Health Care Commission. This should be mandatory for anyone trying to make sense of how health plans work (or don't) for you. The reason it should be mandatory is because you can see both sides of the problem. On the one hand, the state has X-dollars set aside to provide basic health care to the insured state employees. Given budget cuts and the dismal economic outlook, keeping money in the state coffers to cover health care costs is going to be a challenge. I can appreciate that even more after this meeting. But, let's cut to the chase.

Question: Should the state cover electronic prosthetic components? There was a lot of discussion surrounding this. It boiled down to either removing the electronic exclusion from the contract OR...putting a cap on prosthetics in general. That would have been the kiss of death. What about all those other whacky exclusions like comfort, convenience, etc.? They didn't come up. Some key questions that might give a person insight into the thought process are: Does Medicare and Medicaid cover this? (yes) Are there limits to who might receive such a prosthesis? (no direct answer here - that surprised me because there ARE) Is there an alternative approach, i.e., a limit (cap) on prosthetics? (strong arguments against this approach).

Cut! Rewind....

Prior to this discussion, it turns out that there was a KS Senate bill that required KHPA to conduct a study and determine whether to include bariatric surgery under medical coverage. A Senate bill (SB511) mind you! I don't know whether to stand here slack-jawed or pat myself* on the back for accomplishing the same thing for prosthetic parity without a Senate Bill. I'm not going to dwell on this except to say that there are now two issues concerning the 2010 health care contract - whether to include bariatric surgery and electronic prosthetic components. No decision was made today on either, but, to the credit of KHPA, they are going to convene a technology committee of prosthetists and medical doctors to learn more about prosthetics, how they operate, who needs them and why so they will no longer be in the "dark ages of coverage." (Their words, not mine.) Ultimately, the decision will be that of the Health Care Commission and I expect that decision will be made by May.

I know you might be thinking, "What's taking so long and how is that going to help you?!" Well, it's the government and look at the bright side - we didn't have to have a Senate Bill to get KHPA to do some research and convene a committee to look at fair coverage for amputees. As for me and my wonderful C-leg, it's probably too little, too late, to do me any good. Still, if we can accomplish prosthetic parity for state employees, then we've built the foundation for state wide parity.

I will say that I feel significantly less crazed, less like I'm trying to paddle up the Missouri river with a fly swatter. That's a good thing.

I'm going to go play some tunes now.

*this includes all of you - the friends, colleagues, senators, representatives and fellow amputees and above all, Dave, for giving up a perfectly good day to sit through a meeting!

Drum Roll - May I have the envelope please?

After two months, I received the response to my 1st level appeal to BCBS of KS. (The photo to the left would be considered a "covered" item - a sock pulled over a Pringle's can, stuffed in a shoe.)

This is what I wrote in my "2nd level appeal." I have to exhaust all my appeals before I have the right to bring civil action. It's just a way to keeping dragging things out hoping I'll go away or get run over by a truck before they have to deal with me.

Thank you for the detailed review of my first level appeal. I can see by your response that you have given this matter a great deal of consideration. Indeed, it took 2 months to generate the following paragraph: [KFG: This is "Sarchasm" - The gulf between the author of sarcastic wit and the person who doesn't get it.]

"The items denied as non-covered were reviewed pre-service and notification was made to you that the micro-processor knee and lithium battery were considered electrical add-on items and were exclusions to the contract. The contract does not specifically indicate the denied items as ‘deluxe’; however, they do fall under the exclusion for charges for electrically operated prosthetic appliances, devices or items. This exclusion applies only to prosthetic items, not durable medical equipment such as a pacemaker, insulin pumps or other items indicated in your appeal. Therefore, the denials are correct."

[KFG: Woo-Hoo! They came right out and admitted that they only discriminate against amputees!]

Thank you for confirming that this exclusion is limited only to prosthetics. Therefore, by default, only amputees are affected by this arbitrary exclusion. That was precisely my point and your confirmation is very informative. While you are correct in that the contract does not use the word “deluxe,” I have several documents from your company and the Kansas State Employee Health Policy Authority that specifically use the word “deluxe” as a reason for denial. The word seems to have found favor since the 2009 State Employee Health Care Contract now denies amputees “deluxe enhancements, electronic components, microprocessors, performance enhancements, comfort, convenience and luxury items.” I’m not certain that there is a CPT code for comfort and convenience, but I can assure you that there is nothing comfortable or convenient about amputation and using a prosthetic limb.

Yada-yada, blah, blah, blah....

So, let me see...around the end of March, first of April, I should get back another thoughtful paragraph that says, "No."

URGENT - Breaking News!

You must watch this video (CLICK HERE!) on Good Morning America! Please write Good Morning America and share my story. This is an excellent opportunity to draw attention to the lack of prosthetic parity in Kansas! If you can't get the video, you can read the transcript by clicking on this link.

The latest report I have from the policy makers in KS is that the Chairman of the Health Care Commission, Duane Goossen, is also the state budget director and the budget is a mess, so I'm way, way, down on the priority list. Let's rock the boat.

You can watch the videos down below too, but for now, START HERE.

The C-leg: Making a Difference

Watch CBS Videos Online

Striking Parallels

I saw this story on the Today Show this morning. There were a lot of striking similarities between her story and mine, the same language, the same arbitrary denials. See if you don't think so too. (If the video player below doesn't work for you, click this link)

Visit msnbc.com for Breaking News, World News, and News about the Economy

Parity and Microprocessors - A Fresh Perspective

I came across the writings of Jothy Rosenberg, an above knee amputee and cancer survivor who has written several compelling essays at his blog, A Leg Up. He writes about the need for prosthetic parity and has a must read article about microprocessor knees that explains why not all prosthetic knees are created equal. Grab a cup of coffee and give it a read - great stuff.

Boiling Oil...or...How I Learned to Play Piano

We spent New Year's Eve at a friend's house and got into a conversation about music - whether people are born with talent or just persist until they become experts. That got me to the "boiling oil" story which, I suppose it's fair to say, that I wouldn't have learned to play piano or become the musician that I am had it not been for growing up with "the leg."

Sometime around age 5 I was at the Children's Hospital in Memphis for Operation-Number-God-Only-Knows, a place where I spent every summer for the first 10 years of my life in an effort to fix the bone in my lower leg. Dad and I were watching a movie on television - the peasants were storming the castle and the defenders of the castle were pouring something down on the peasants that was causing a lot of writhing and screaming. "What's that?" I asked. "Boiling oil," said Dad. Wow. The agony - to be coated in boiling oil - horrors! It made an impression that would last a lifetime.

While I was contemplating such a horrible death, Mom was running around the hospital and bumped into some RLDS missionaries. As desperate parents in search of a cure will do, she thought it might help if they came and prayed over me. The missionaries thought it might help too, maybe pick up a couple of converts which ultimately, they did, but that's another story.

Mom returned to the room about the time the movie was wrapping up and said, "There are some nice men outside who want to come minister over you." Say, what? I didn't have a clue what she was talking about so she explained that these two men were going to have a "laying of the hands" over me and that it might fix my leg. Fixing my leg peaked my interest but the hand thing didn't seem right. "What exactly were they going to do?" I asked. "They're going to put oil on your head and put their hands on your head and pray over you," she answered.

I'm not sure how long I screamed. I think my eyeballs left my sockets. I could see the two men outside the room, pacing back and forth, anxious to come in and pour boiling oil on my head. Mom was mortified and left the room to try to explain (how could she know the depth of my fear?). She came in few minutes later and tried to bribe me with a present. Dad, who initially thought the whole scene was amusing, was trying to reason with me but I was beyond reason. They finally left. Mom was furious, Dad amused and I got the bribe as a Christmas present that same year. What was it? A tiny, black, toy grand piano that I played so relentlessly that Dad's great aunt gave us an old upright piano because they thought I had "talent."

I don't believe in talent - I had persistence. Those people who persist at anything; a sport, an art or overcome what others call a "handicap" are the people who rise to the surface, not because they're courageous/brave/heroes, but because they just want to DO whatever it is they've chosen to do. To do, and do it well.

Then there are people who put obstacles in the path of the persistent. These people rise to the surface in a different way...kind of like...well, use your imagination...and don't forget to flush!