Wednesday, December 26, 2012
2012 - The Year of NOTHING
Nothing for 2012. No action on the bill (are we surprised?). Congress can't agree on anything, nothing happens in an election year anyway. Olympia Snowe resigned so who has the courage to introduce the bill now? The Amputee Coalition is supposedly working on getting support for the bill, but nothing is followed by more nothing. We'll see what 2013 brings.
Thursday, November 24, 2011
S.773 in Committee
Currently, S.773 is in the committee on Health, Education, Labor and Pensions. You can find all of the committee members here. If one of them represents your state, please contact them and encourage them to get this bill moving. Even if your state isn't represented here, please send the sample letter below to your state Senator:
Dear Senator __________
I am writing to ask you to support S.773, “Insurance
Fairness for Amputees” which is currently in the Senate committee on Health,
Education, Labor and Pensions.
Many amputees who have insurance do not receive the
same standard of care that is customary from the Veteran’s Administration,
Medicare and Medicaid. Children with limb loss are often limited to “one limb
for life.” Medically necessary prosthetics are arbitrarily designated as “luxurious,
deluxe, convenient or performance enhancing” and thereby denied. Families
mortgage their homes or give up their child’s college education or retirement
savings in order to pay out of pocket for a prosthetic limb. Twenty states have
passed laws that prevent this kind of insurance discrimination but self-insured
plans covered by ERISA are exempt. S.773 would prevent this exemption and would
provide insurance fairness for all amputees in America.
This is not a mandate or a hand out. It is only
fair. Prosthetic limbs would be covered like any other medical expense
according to the plan contract. States that have passed the insurance fairness
laws have shown that insurance premium costs would increase by only pennies a
month.
All people with limb loss who pay for insurance
should receive appropriate and medically necessary treatment: their arms and
legs. Prosthetics provide dignity and self-reliance. Prosthetics put people
back to work. Returning amputees to the workforce strengthens a community and
its economy.
Sincerely,
Wednesday, November 23, 2011
Investigative Report on Insurance Discrimination
Here is the investigative report from Kansas City's KCTV5. The reporter, Stacey Cameron, did an excellent job of understanding and communicating the insurance issues that face amputees. It's time to DEMAND that our Senators get behind S.773. It's been dragging on for years with no action. Enough said.
Tuesday, November 22, 2011
Wednesday, June 22, 2011
Changes, Some Good - Some bad
In the good news department, TSA is making changes to airport screenings for children. Hopefully, changes are on the horizon for those of us with other "issues." Until then, it's still recommended that we check in 90 minutes before flight time for our "heightened" security screening.
In the bad news department, there were changes to our health care contract. Now, the same restrictions that have been applied to prosthetic devices has been applied to orthotics. One would think that the O&P industry would be up in arms over this (no pun intended!). When chatting with a prosthetist recently, he was as frustrated as I was. These people are well educated and trained to help us get on with a normal life. We have life-long relationships with these professionals and spend hours with them compared to a few minutes with our physicians. They want to provide the best care and offer the best prosthetic for their patients. When their care is limited by inadequate insurance coverage, they can only offer sub-par or "basic" prosthetics and now orthotics. "Basic" means that you can dress yourself and use the restroom unassisted. Anything else would be considered "enhanced performance."
I gave a motivational presentation to a group of parents of children with prosthetics this last weekend. These parents want their children to be able to do anything that they want to do, and almost anything is possible now with all the prosthetic advances, but not if they are underinsured and not if the prosthetics industry - I'm talking about the makers, not the middle men and women in the O&P industry - continue to price prosthetics in the range of a couple of luxury cars or a small home.
I was also approached by a professional women, a grandmother of a little girl with a congenital arm malformation. This lovely woman was from another country and culture. Her questions to me were direct and made me reach into painful places that I didn't want to remember. "Why do so many amputees show their prosthesis instead of covering them up?" Ouch... as I stood there proudly showing off my C-leg in a pair of shorts. I explained to her that, in the past, I would have kept it covered, but now, people are more accepting. "Are you married? How long have you been married?" Clearly she wanted to know if someone would love and marry her grand-daughter. When I told her that I married once, too young, only because I thought no one would marry me - a cripple - she seemed stunned. "But you are so beautiful," she said. That gave me pause. She perceived me as beautiful, yet she worried that her grand-daughter might not be seen in the same way. I wish I could have spent an hour with her, such a lovely woman with so many concerns. I only discovered in later years how much my mother struggled with these negative perceptions and how she had to fight to keep me in public school instead of a school for children with mental and physical disabilities. What would I have been had she caved in to societal pressure of the time?
I walked away from that meeting with a profound respect for the parents there and a renewed appreciation for my own. With their support, determination, love and persistence, they made me what I am today.
In the bad news department, there were changes to our health care contract. Now, the same restrictions that have been applied to prosthetic devices has been applied to orthotics. One would think that the O&P industry would be up in arms over this (no pun intended!). When chatting with a prosthetist recently, he was as frustrated as I was. These people are well educated and trained to help us get on with a normal life. We have life-long relationships with these professionals and spend hours with them compared to a few minutes with our physicians. They want to provide the best care and offer the best prosthetic for their patients. When their care is limited by inadequate insurance coverage, they can only offer sub-par or "basic" prosthetics and now orthotics. "Basic" means that you can dress yourself and use the restroom unassisted. Anything else would be considered "enhanced performance."
I gave a motivational presentation to a group of parents of children with prosthetics this last weekend. These parents want their children to be able to do anything that they want to do, and almost anything is possible now with all the prosthetic advances, but not if they are underinsured and not if the prosthetics industry - I'm talking about the makers, not the middle men and women in the O&P industry - continue to price prosthetics in the range of a couple of luxury cars or a small home.
I was also approached by a professional women, a grandmother of a little girl with a congenital arm malformation. This lovely woman was from another country and culture. Her questions to me were direct and made me reach into painful places that I didn't want to remember. "Why do so many amputees show their prosthesis instead of covering them up?" Ouch... as I stood there proudly showing off my C-leg in a pair of shorts. I explained to her that, in the past, I would have kept it covered, but now, people are more accepting. "Are you married? How long have you been married?" Clearly she wanted to know if someone would love and marry her grand-daughter. When I told her that I married once, too young, only because I thought no one would marry me - a cripple - she seemed stunned. "But you are so beautiful," she said. That gave me pause. She perceived me as beautiful, yet she worried that her grand-daughter might not be seen in the same way. I wish I could have spent an hour with her, such a lovely woman with so many concerns. I only discovered in later years how much my mother struggled with these negative perceptions and how she had to fight to keep me in public school instead of a school for children with mental and physical disabilities. What would I have been had she caved in to societal pressure of the time?
I walked away from that meeting with a profound respect for the parents there and a renewed appreciation for my own. With their support, determination, love and persistence, they made me what I am today.
Tuesday, June 14, 2011
Friday, June 3, 2011
ACA Conference
I had a wonderful time at the conference. It was very informative. A lot of people are dealing with chronic pain and there were two excellent sessions dealing with this topic. There were gait training sessions, glimpses of new technologies in socket designs (nothing earth shattering - some twists on the basic designs but way cool socket art!) and demonstrations of newer knees. All that is well and good, but let's get to the insurance fairness topic.
First, for several really good reasons, the term "prosthetic parity" is being dropped for "Insurance Fairness" (for who?) for Amputees. Makes sense and cuts to the chase. Senator Snowe reintroduced the bill in the Senate (S.773) and word on the street has it that the House version was reintroduced within the last few days. When I get the details I will draft two sample letters to send to your Senators and Representatives. In the meantime, you may notice a shift from "Prosthetic Parity" to "Insurance Fairness" on my site.
Second, we had a chance to talk with one of the higher ups at TSA. It was a reassuring meeting and the needs of people with disabilities are being discussed. Again, we should expect some changes soon, including (maybe) a way to opt out of the cast scope. One physician in the audience pointed out that the so called "minimal" X-ray exposure from the Cast Scope, when multiplied by the 4 or more different views times 2 per trip, times 20 or more trips per year quickly adds up to maximum exposure. Add that to the cumulative exposure that we with multiple orthopedic procedures receive or those who lose a limb to cancer and are exposed to radiation therapy... one person's "minimal" exposure is another persons tipping point. Thankfully, the ACA is working with TSA and we can expect some resolutions soon. We all understand the need for National security. And, as difficult as it is to tolerate, especially when we have already experienced limb loss, insurance discrimination and chronic pain, yes, because we are amputees, we must endure the additional screening.
First, for several really good reasons, the term "prosthetic parity" is being dropped for "Insurance Fairness" (for who?) for Amputees. Makes sense and cuts to the chase. Senator Snowe reintroduced the bill in the Senate (S.773) and word on the street has it that the House version was reintroduced within the last few days. When I get the details I will draft two sample letters to send to your Senators and Representatives. In the meantime, you may notice a shift from "Prosthetic Parity" to "Insurance Fairness" on my site.
Second, we had a chance to talk with one of the higher ups at TSA. It was a reassuring meeting and the needs of people with disabilities are being discussed. Again, we should expect some changes soon, including (maybe) a way to opt out of the cast scope. One physician in the audience pointed out that the so called "minimal" X-ray exposure from the Cast Scope, when multiplied by the 4 or more different views times 2 per trip, times 20 or more trips per year quickly adds up to maximum exposure. Add that to the cumulative exposure that we with multiple orthopedic procedures receive or those who lose a limb to cancer and are exposed to radiation therapy... one person's "minimal" exposure is another persons tipping point. Thankfully, the ACA is working with TSA and we can expect some resolutions soon. We all understand the need for National security. And, as difficult as it is to tolerate, especially when we have already experienced limb loss, insurance discrimination and chronic pain, yes, because we are amputees, we must endure the additional screening.
Wednesday, June 1, 2011
It's June...
Where does the time go?
What's new? Well, the neuroma is hanging in there. It has a life of it's own. It has its very own tiny brain that keeps seizing and sending pain messages up to my brain. I think I have it beat and then when I do too much (i.e., walking - as that asking too much?) it comes back and wrestles me to the ground. I hate it. Sometimes I think about cutting my leg open reaching in there, grabbing that evil, gnarly monster and biting it off with my teeth. It's the only thing limiting me at the moment. I have my strength, the socket is great, the C-leg is perfection. Turn me loose and let me go, please. I'm up to 2700 mg of gabapentin and 25 mg of amitriptyline. I'm in a stupor and it still gnaws at me. Gnaw, gnaw, zap, zing, tingle, spasm, wake up with the sensation of someone hammering a nail in your heel (which isn't there - neither the heel or the nail!). So here's the deal. We're going to electrocute the little sucker. A little electroshock therapy and hopefully some of those aberrant neurons will fry. Zap me? I'll zap you back. Bwa-ha-ha! Stay tuned.
The Amputee Coalition of America is having their National Conference in Kansas City. It starts tomorrow. What will it be like going somewhere where everyone is like you and you don't have to explain anything? Normal? Huh. What a concept.
We'll have an opportunity to talk to a TSA representative and to work on the parity issue. About time!
What's new? Well, the neuroma is hanging in there. It has a life of it's own. It has its very own tiny brain that keeps seizing and sending pain messages up to my brain. I think I have it beat and then when I do too much (i.e., walking - as that asking too much?) it comes back and wrestles me to the ground. I hate it. Sometimes I think about cutting my leg open reaching in there, grabbing that evil, gnarly monster and biting it off with my teeth. It's the only thing limiting me at the moment. I have my strength, the socket is great, the C-leg is perfection. Turn me loose and let me go, please. I'm up to 2700 mg of gabapentin and 25 mg of amitriptyline. I'm in a stupor and it still gnaws at me. Gnaw, gnaw, zap, zing, tingle, spasm, wake up with the sensation of someone hammering a nail in your heel (which isn't there - neither the heel or the nail!). So here's the deal. We're going to electrocute the little sucker. A little electroshock therapy and hopefully some of those aberrant neurons will fry. Zap me? I'll zap you back. Bwa-ha-ha! Stay tuned.
The Amputee Coalition of America is having their National Conference in Kansas City. It starts tomorrow. What will it be like going somewhere where everyone is like you and you don't have to explain anything? Normal? Huh. What a concept.
We'll have an opportunity to talk to a TSA representative and to work on the parity issue. About time!
Tuesday, March 22, 2011
Part Two - Sample Letter to Governor Brownback
Here's a sample letter you can send to the Governor. Cut, paste, edit - do whatever you like, but please send during the month of April!
Governor Sam Brownback
Capitol, 300 SW 10th Ave., Ste. 241S
Topeka, KS 66612-1590
Dear Governor Brownback,
I am writing in support of your decision to declare the month of April as “Limb Loss Awareness Month” in Kansas. This is an important step towards raising awareness of health and lifestyle changes to prevent limb loss but also to highlight the health care disparities that many with limb loss face.
For example, Kansas state employees who are covered by the State health care contract, drafted by the Kansas Health Policy Authority, do not receive the same standard of care that is customary by the Veteran’s Administration, Medicare and Medicaid. In order for a Kansas state employee to receive the same standard of care, they would have to pay $20-30,000 out of pocket. Financially, an employee would be better off to quit working and accept disability so that they could afford a prosthesis. Many do - or mortgage their homes and wipe out savings or retirement accounts.
To date, nineteen states have passed a parity law to prevent this type of health disparity. Please consider changing the state health care plan to cover prosthetics on par with medical coverage. For example, coverage for prosthetic care should at least meet Medicare standards (80 percent paid by plan, 20 percent by patient, no exemptions on microprocessor devices, 5-year useful lifetime limit).
All people with limb loss who pay for insurance should receive appropriate and medically necessary treatment: their arms and legs. Prosthetics provide dignity and self-reliance. Prosthetics put people back to work. Returning amputees to the workforce strengthens a community and its economy.
Sincerely,
New Governor - New Support
I received a message from the Amputee Coalition of America yesterday, letting me know that the new Governor of Kansas, Sam Brownback, is going to designate the month of April as "Limb Loss Awareness Month" with a signing ceremony on Friday, March 25th. Unfortunately, I will not be able to attend the signing ceremony which makes me very unhappy since any recognition of limb loss by the state is a huge step in the right direction. While I doubt that Kansas will put forth a bill for prosthetic parity before the Federal bills pass, maybe Kansas will at least remove the restrictions from the state employee health care contract that only allows the most rudimentary prosthetics and orthotics, denying their employees prosthetics that even state Medicaid recipients are entitled to. Prosthetics that are commonly prescribed and provided under Medicare, Medicaid and the VA are deemed "luxury items" for state employees. Therefore, state employees who pay ever increasing insurance premiums are not covered. Please write Governor Brownback and encourage him to start by changing prosthetic benefits for state employees. Individuals who pay for insurance through premiums should receive appropriate and medically necessary treatment: their arms and legs.
Prosthetics provide dignity and self-reliance. Prosthetics put people back to work. Returning amputees to the workforce strengthens a community and its economy.
Prosthetics provide dignity and self-reliance. Prosthetics put people back to work. Returning amputees to the workforce strengthens a community and its economy.
Saturday, January 29, 2011
Look Very Closely...
...and you'll see my Congressman Emanuel Cleaver and Senator Claire McCaskill sitting with Kansas Senator Jerry Moran and Senator Olympia Snowe of Maine at the State of the Union Address. Oh! How I wish I could have been there. Here's what I would have said:
"Congressman Cleaver - did you know that Senator Moran was a co-sponsor of HR 2575*, the Prosthetic and Custom Orthotic Parity Act of 2009 that will provide parity under group health plans and group health insurance coverage in the provision of benefits for prosthetic devices and... Oh my goodness! Look who else is here! It's Senators Snowe and McCaskill! Senator McCaskill, did you know that Senator Snowe introduced S. 3223? ** In the spirit of bi-partisanship, wouldn't it be wonderful if you, Claire and you, Emanuel, demonstrated your support for these bills?"
Ah yes, in a perfect world... OK, yes, it's a very tiny picture but it's real. In fact in Representative Cleaver' confirmed it in his weekly newsletter, "EC from DC."
*5/21/2009--Introduced.Prosthetic and Custom Orthotic Parity Act of 2009 - Amends the Employee Retirement Income Security Act of 1974 (ERISA) to require a group health plan that provides medical and surgical benefits as well as benefits for prosthetic devices and components and orthotic devices to offer such prosthetic and orthotic coverage in the same manner as applicable to medical and surgical benefits. Prohibits separate financial requirements or more restrictive treatment limitations.
**4/19/2010--Introduced.Prosthetics and Custom Orthotics Parity Act of 2010 - Amends the Employee Retirement Income Security Act of 1974 (ERISA) and the Public Health Service Act to require a group health plan that provides medical and surgical benefits and also provides benefits for prosthetics and custom orthotics to offer such prosthetics and custom orthotics in the same manner as applicable to medical and surgical benefits. Prohibits separate financial requirements or more restrictive treatment limitations.
"Congressman Cleaver - did you know that Senator Moran was a co-sponsor of HR 2575*, the Prosthetic and Custom Orthotic Parity Act of 2009 that will provide parity under group health plans and group health insurance coverage in the provision of benefits for prosthetic devices and... Oh my goodness! Look who else is here! It's Senators Snowe and McCaskill! Senator McCaskill, did you know that Senator Snowe introduced S. 3223? ** In the spirit of bi-partisanship, wouldn't it be wonderful if you, Claire and you, Emanuel, demonstrated your support for these bills?"
Ah yes, in a perfect world... OK, yes, it's a very tiny picture but it's real. In fact in Representative Cleaver' confirmed it in his weekly newsletter, "EC from DC."
*5/21/2009--Introduced.Prosthetic and Custom Orthotic Parity Act of 2009 - Amends the Employee Retirement Income Security Act of 1974 (ERISA) to require a group health plan that provides medical and surgical benefits as well as benefits for prosthetic devices and components and orthotic devices to offer such prosthetic and orthotic coverage in the same manner as applicable to medical and surgical benefits. Prohibits separate financial requirements or more restrictive treatment limitations.
**4/19/2010--Introduced.Prosthetics and Custom Orthotics Parity Act of 2010 - Amends the Employee Retirement Income Security Act of 1974 (ERISA) and the Public Health Service Act to require a group health plan that provides medical and surgical benefits and also provides benefits for prosthetics and custom orthotics to offer such prosthetics and custom orthotics in the same manner as applicable to medical and surgical benefits. Prohibits separate financial requirements or more restrictive treatment limitations.
Tuesday, January 18, 2011
TSA - Grope or scope? You don't get to vote!
Maybe this wouldn’t have been such a miserable experience had Dave and I not been stuck on a shuttle bus for 3 hours and 40 minutes in total gridlock traffic coming from the conference in Keystone to the Denver Airport. Nonetheless, it is a real situation, one every traveler faces at some time when something keeps you from getting to the gate on time and you have to hurry to catch your flight.
We checked our bags at the Southwest gate, 20 minutes before our flight was to depart and arranged for a wheelchair because there was no way I could move fast enough to make it to the gate in time. But first, we had to get through security. Fortunately, there was a line for the “disabled” so we thought it would speed things up going through this shorter line. Think again.
I pulled off one boot and Dave went through with my boot, computer and purse. He was in and out in a flash, but I sat at the threshold between the full body scanner and the metal detector. One of TSA’s finest stared at me, rolled her eyes at my exposed C-leg and groaned, “Oh brother – I hope we don’t have to use the CastScope.” I said, “I’ll do the full body pat down, I just need to catch my flight.” Still, I waited. I waited until 3 more TSA agents showed up and they finally let me through the metal detector. It beeped (duh!) so I got the public pat down and gunpowder/bomb residue check. When she was done I realized she wasn't going to let me go and more TSA agents were standing around. Dave tried to hand me my boot but I couldn’t have it. I stood there with one pant leg rolled up, one boot off, Dave nearing panic, the wheelport transport guy checking the gate information and then they told me I had to undergo the CastScope.
I heard a guy on the bus saying that he wouldn’t know what to do if his wife had to have a full body pat-down. I find this so crazy. The majority of able-bodied are freaked out about the pat down but we amputees just have to get used to it. At at least there are options for the able-bodied. You see, the able-bodied can opt out of the full-body scanner if they don’t want to get exposed to X-rays and get a groping instead.
Amputees have no options. If an airport has a CastScope, it’s mandatory that we be exposed to several X-rays while they try to figure out what’s in there (or not). If you submit to the scoping, you can get out of the groping but not vice versa.
So, back to Denver… After what seemed like an eternity, I was taken to the door of the CastScope machine and waited for the poor schmuck before me to come out. The TSA agent wheeled me in front of the machine and started pushing a bunch of buttons on a flat screen. Without prompting and trying to speed things along I just stood up and positioned my leg in front of what looked like the right thing. Then she said, “You can go now.” As I left I heard her comment that it had “locked up again.” All that, and I never got the scope, just the grope. Dave ran through the airport and thanks to the heroic effort of the wheelchair transport gentleman, we got to the plane seconds before the door closed.
If you’ve lost a limb, you’re automatically a security risk. I wonder how this will play out with our servicemen and women who lost a limb or limbs defending our country? Somehow, I don’t think that being treated like a security threat will sit well with them.
We checked our bags at the Southwest gate, 20 minutes before our flight was to depart and arranged for a wheelchair because there was no way I could move fast enough to make it to the gate in time. But first, we had to get through security. Fortunately, there was a line for the “disabled” so we thought it would speed things up going through this shorter line. Think again.
I pulled off one boot and Dave went through with my boot, computer and purse. He was in and out in a flash, but I sat at the threshold between the full body scanner and the metal detector. One of TSA’s finest stared at me, rolled her eyes at my exposed C-leg and groaned, “Oh brother – I hope we don’t have to use the CastScope.” I said, “I’ll do the full body pat down, I just need to catch my flight.” Still, I waited. I waited until 3 more TSA agents showed up and they finally let me through the metal detector. It beeped (duh!) so I got the public pat down and gunpowder/bomb residue check. When she was done I realized she wasn't going to let me go and more TSA agents were standing around. Dave tried to hand me my boot but I couldn’t have it. I stood there with one pant leg rolled up, one boot off, Dave nearing panic, the wheelport transport guy checking the gate information and then they told me I had to undergo the CastScope.
I heard a guy on the bus saying that he wouldn’t know what to do if his wife had to have a full body pat-down. I find this so crazy. The majority of able-bodied are freaked out about the pat down but we amputees just have to get used to it. At at least there are options for the able-bodied. You see, the able-bodied can opt out of the full-body scanner if they don’t want to get exposed to X-rays and get a groping instead.
Amputees have no options. If an airport has a CastScope, it’s mandatory that we be exposed to several X-rays while they try to figure out what’s in there (or not). If you submit to the scoping, you can get out of the groping but not vice versa.
So, back to Denver… After what seemed like an eternity, I was taken to the door of the CastScope machine and waited for the poor schmuck before me to come out. The TSA agent wheeled me in front of the machine and started pushing a bunch of buttons on a flat screen. Without prompting and trying to speed things along I just stood up and positioned my leg in front of what looked like the right thing. Then she said, “You can go now.” As I left I heard her comment that it had “locked up again.” All that, and I never got the scope, just the grope. Dave ran through the airport and thanks to the heroic effort of the wheelchair transport gentleman, we got to the plane seconds before the door closed.
If you’ve lost a limb, you’re automatically a security risk. I wonder how this will play out with our servicemen and women who lost a limb or limbs defending our country? Somehow, I don’t think that being treated like a security threat will sit well with them.
Sunday, November 21, 2010
More on TSA
I'm providing more stories about amputees dealing with the TSA here, here, and here. Again, I can't help but be a little amused at the general public's outrage with the new TSA practices when we've dealt with this kind of scrutiny for years.
If you're flying over the holidays, familiarize yourself with the TSA rules regarding prosthetics. Carry a copy with you in case you're subjected to anything like the nightmare situations above.
If you're flying over the holidays, familiarize yourself with the TSA rules regarding prosthetics. Carry a copy with you in case you're subjected to anything like the nightmare situations above.
Thursday, November 18, 2010
TSA - No Disparity Here!
OOOOoooo... I love it! Welcome to MY world!
Ever since scanners and pat downs have been around, I've been suspect just because I have a prosthesis. I announce to everyone that I have "an artificial leg" which draws the attention of all the other passengers but never the bored and indifferent TSA agent. Next, I walk through the scanner and set off the alarm, so they tell me to go back. I announce AGAIN what the problem is and if they're listening, they yell, "FEMALE PAT DOWN!" Then I'm instructed to stand on the little green footprints on the floor and hold my arms away from my sides while they run the wand over me. Of course they find "the leg" so AGAIN, I explain. (So much for HIPAA - now 200+ passengers know my medical history). Because the wand goes off, they have to pat me down explaining that they're using the back of their hand (come on... how many guys in High School would have cared if it was the back or the front of their hand...really!). And, we're not done. Then I have to sit down and they swab my hands and my leg to check for bomb residue. Finally, I'm free to try to find my carry on luggage that went through 5 minutes earlier, without me.
Think it's just me being extra sensitive? Read this 2 year old story.
That's the best case scenario. The worst case is having to disrobe in a booth to show ALL of the prosthesis. Note to self: Always wear nice underwear when traveling. Or the questions, "How far does it go up, how far does it go down, blah, blah. Then everyone is staring but trying not to stare.
So...now the rest of the world is dealing with what I've put up with for years. The outcry is all over the news "Now, I'm here to tell you, it's an outrage! An outrage I say!! We won't be treated this way!"
The Amputee Coalition of America surveyed 7,300 amputees about their experience with the TSA and 75% were dissatisfied. I'm guessing that's similar to the general public's level of dissatisfaction, after all, we are the general public. We're just the general public with a prosthesis or two.
So, in my quest for parity, who knew that the TSA would be the first to get in line?!
Ever since scanners and pat downs have been around, I've been suspect just because I have a prosthesis. I announce to everyone that I have "an artificial leg" which draws the attention of all the other passengers but never the bored and indifferent TSA agent. Next, I walk through the scanner and set off the alarm, so they tell me to go back. I announce AGAIN what the problem is and if they're listening, they yell, "FEMALE PAT DOWN!" Then I'm instructed to stand on the little green footprints on the floor and hold my arms away from my sides while they run the wand over me. Of course they find "the leg" so AGAIN, I explain. (So much for HIPAA - now 200+ passengers know my medical history). Because the wand goes off, they have to pat me down explaining that they're using the back of their hand (come on... how many guys in High School would have cared if it was the back or the front of their hand...really!). And, we're not done. Then I have to sit down and they swab my hands and my leg to check for bomb residue. Finally, I'm free to try to find my carry on luggage that went through 5 minutes earlier, without me.
Think it's just me being extra sensitive? Read this 2 year old story.
That's the best case scenario. The worst case is having to disrobe in a booth to show ALL of the prosthesis. Note to self: Always wear nice underwear when traveling. Or the questions, "How far does it go up, how far does it go down, blah, blah. Then everyone is staring but trying not to stare.
So...now the rest of the world is dealing with what I've put up with for years. The outcry is all over the news "Now, I'm here to tell you, it's an outrage! An outrage I say!! We won't be treated this way!"
The Amputee Coalition of America surveyed 7,300 amputees about their experience with the TSA and 75% were dissatisfied. I'm guessing that's similar to the general public's level of dissatisfaction, after all, we are the general public. We're just the general public with a prosthesis or two.
So, in my quest for parity, who knew that the TSA would be the first to get in line?!
Thursday, November 11, 2010
Why I voted against...
... my representative, Emanuel Cleaver, D-MO. For two years I've never gotten a response that made any sense, much less addressed the issue of prosthetic parity. I received letters that assured me that mental health parity was indeed important (huh?!) and that yes, he supported the health care bill (prosthetic parity was not included in the massive health care reform bill) and I forget what the latest generic response I got was, but none addressed HR 2575. I mean, how hard is this really? A Google search could find the text for "HR 2575." Cut, paste, co-sign the bill and I'm a happy voter. Too late. My one vote didn't matter though so it's back to work trying to make my voice heard.
On the flip side, Jerry Moran, R-KS, has cosigned the bill and is now a US Senator. Congratulations to Senator Moran and thank you again.
Now, please, let's get these bills passed. Please contact your senators and representatives!
On the flip side, Jerry Moran, R-KS, has cosigned the bill and is now a US Senator. Congratulations to Senator Moran and thank you again.
Now, please, let's get these bills passed. Please contact your senators and representatives!
Where have I been?
Busy... so busy with work - the kind that pays the bills. I've also developed a pesky neuroma. A neuroma is the result of cutting the sciatic nerve. The nerve cells start growing into a little ball, sending out all sorts of crazed messages that spell PAIN. I was in serious denial for a long time - maybe a year. We blamed the socket and no doubt there were some serious issues with the socket materials, but once we ironed these out, the pain remained. Gnawing, crushing pain that invaded my thoughts and every moment of my day and night. Every step, even something as simple as rolling over in bed brought it on. Vibrations from the car would send my leg into spasms and phantom pain.
The MRI revealed the neuroma and I still denied that something that small could cause so much pain. I saw a pain specialist that listened to all my drivel about bone spurs, etc., and he calmly said, "It's the neuroma (stoo-pid)." One injection of anesthetic and steroid shut it down. Dang. It was a miracle. Four weeks later it reared it's ugly head and like resistant bacteria, nothing could calm it. It was back with a vengeance. I was certain that surgery would be the answer so I visited my surgeon. She described what it would take to find, cut out and calm the nerve with no guarantee that it would not come back and could possibly come back even worse. It was gruesome and left me reconsidering my pain options. So, back to the pain specialist.
Now I'm on 1800 mg of Gabapentin and 25 mg of Amitryptyline a day. This dulled the constant, gnawing pain and allowed me to at least walk about 25 yards without seizing up. Two weeks ago I had a lumbar block which basically consists of having 5 inch needles stuck in your back and blocking the sympathetic nerve that sends the message from the sciatic to your brain; the message that says, "OH MY GOD! OW!" Brilliant. I can walk. I can roll over in my sleep. Now, when walking away from a group, instead of acting like I'm doing something "busy" while I ever so slowly get used to the pain, I stand up and walk away. It's not perfect or permanent, but right now, this moment, it's damned good!
And, speaking of good, I figured out how to modify the old 3R80 knee for riding. That floppy, useless hydraulic knee is perfectly suited for riding. Just turn the foot in 45 degrees and let the knee hang. It only has two useful positions locked upright - which allows me to stand in the stirrups - and hanging there passively, all booted up and in the stirrup. Very useful for riding and I don't scare small children like I did riding with no lower leg.
And now, about that parity issue. It's about as stale as an old Cheez-it found with the loose change under the couch cushions. Alright already. The elections are over. Let's get this show on the road!
The MRI revealed the neuroma and I still denied that something that small could cause so much pain. I saw a pain specialist that listened to all my drivel about bone spurs, etc., and he calmly said, "It's the neuroma (stoo-pid)." One injection of anesthetic and steroid shut it down. Dang. It was a miracle. Four weeks later it reared it's ugly head and like resistant bacteria, nothing could calm it. It was back with a vengeance. I was certain that surgery would be the answer so I visited my surgeon. She described what it would take to find, cut out and calm the nerve with no guarantee that it would not come back and could possibly come back even worse. It was gruesome and left me reconsidering my pain options. So, back to the pain specialist.
Now I'm on 1800 mg of Gabapentin and 25 mg of Amitryptyline a day. This dulled the constant, gnawing pain and allowed me to at least walk about 25 yards without seizing up. Two weeks ago I had a lumbar block which basically consists of having 5 inch needles stuck in your back and blocking the sympathetic nerve that sends the message from the sciatic to your brain; the message that says, "OH MY GOD! OW!" Brilliant. I can walk. I can roll over in my sleep. Now, when walking away from a group, instead of acting like I'm doing something "busy" while I ever so slowly get used to the pain, I stand up and walk away. It's not perfect or permanent, but right now, this moment, it's damned good!
And, speaking of good, I figured out how to modify the old 3R80 knee for riding. That floppy, useless hydraulic knee is perfectly suited for riding. Just turn the foot in 45 degrees and let the knee hang. It only has two useful positions locked upright - which allows me to stand in the stirrups - and hanging there passively, all booted up and in the stirrup. Very useful for riding and I don't scare small children like I did riding with no lower leg.
And now, about that parity issue. It's about as stale as an old Cheez-it found with the loose change under the couch cushions. Alright already. The elections are over. Let's get this show on the road!
Friday, July 30, 2010
Disparity in Action
Same-o, Same-o. How long have we been at this? Disgusting isn't it? The state laws are nice but the self-insured plans, like those in Kansas would be exempt if a state prosthetic parity law passed. That's why my energy is no longer directed towards introducing legislation in Kansas. Instead, I've directed efforts to pass the Federal parity bills that will enforce the law in all states.
I wrote my Senators and Representatives several months ago asking them to Co-Sponsor and support S. 3223 and HR 2575. Here's the tally so far:
Cleaver, D-MO: No response. Previous letters responding to my request were totally off topic, i.e., mental health parity, the national health care bill, both of which have passed and in the years I've been writing, the Prosthetic Parity Bill is still on the table. His office has never acknowledged that I'm asking him to Co-Sponsor the HR 2575.
Bond, R-MO: No response, ever.
McCaskill, D-MO: Responded that she would like to support it, but there was no Senate Bill. *sigh* Why is it up to me to point out that there is a Senate Bill? I realize of course that Senators are too busy to know what all is out there, but don't they have people working for them? Sheesh! Look it up!
I'm happy to report that Jerry Moran, R, KS-1 has Co-Sponsored HR 2575 as have 27 other Representatives; just not mine.
Friday, April 23, 2010
The Federal Prosthetic and Custom Orthotic Parity Act (S. 3223)
From the ACA (I've bolded the especially important part):
The Federal Prosthetic and Custom Orthotic Parity Act (S. 3223) was introduced April 19 by Senators Olympia Snowe (R-ME) and Tom Harkin (D-IA). The Amputee Coalition of America (ACA) and the American Orthotic & Prosthetic Association (AOPA) have worked together with special help from the O&P Alliance over the past year to get the Senate bill introduced. In addition to the Alliance members and the ACA, there are more than 25 other nonprofit organizations with a stake in O&P patient care outcomes supporting the legislation.
The importance of federal parity and state parity legislation has grown dramatically with the passage of the recent healthcare reform law, which permits health insurers to sell across state lines under "health insurance compacts." These multi-state arrangements allow the insurer to select the lowest common regulatory denominator. It is feared that states without parity laws would often be the insurer's regulatory venue of first choice. This choice would, in effect, rescind or override any parity laws that may have been passed in other states served by the "health insurance compact." This makes federal parity and state parity laws virtually indispensable, both in filling the gaps created by self-insured employers regulated by ERISA that are unaffected by state laws as well as reinforcing existing state laws that govern state-regulated insurance offerings. [KFG: To sum it up, KS would make a good home for those trying to dodge the state parity laws - then everyone could get the same treatment I get!]
The House P&O bill, HR 2575, was introduced last year by Representatives Rob Andrews (D-NJ) and George Miller (D-CA), who is also chair of the Education and Labor Committee.
We have strong bipartisan, chief sponsors of our Senate and House bills.
Senator Snowe said the following about the Senate bill:
"Our legislation will ensure that group health plans treat coverage of such prosthetics and custom orthotics on par with other essential medical care covered by health insurance. Providing more meaningful coverage is particularly essential for children, who may require more frequent replacements as they grow."
Senator Harkin added:
"Hundreds of thousands of Americans living with limb loss are currently required by their insurance companies to pay out-of-pocket for prosthetic devices that are integral to their daily lives. While most insurance companies cover prosthetics and orthotics, there are many instances where the benefits are arbitrarily capped or exclusions are imposed on those who need them. This legislation will require insurance companies to provide the same benefits for prosthetic devices as they do for other treatments, helping individuals with disabilities more fully participate in school, work and community activities."
Representative Andrews said the following about the House bill:
"By expanding coverage for prosthetic devices so that it is on par with other types of essential care, not only will amputees receive necessary treatment and experience better quality of life, but the healthcare industry as a whole will save money. Since prosthetics often dramatically decrease secondary health problems for those in need, the benefits of this coverage far outweigh the costs in the long run."
At this critical point, with a House bill and now a Senate bill both introduced, the ACA is gearing up grassroots activities and has a call to action for you to contact your member of Congress and ask him/her to sign as a cosponsor of the bill.
The Federal Prosthetic and Custom Orthotic Parity Act (S. 3223) was introduced April 19 by Senators Olympia Snowe (R-ME) and Tom Harkin (D-IA). The Amputee Coalition of America (ACA) and the American Orthotic & Prosthetic Association (AOPA) have worked together with special help from the O&P Alliance over the past year to get the Senate bill introduced. In addition to the Alliance members and the ACA, there are more than 25 other nonprofit organizations with a stake in O&P patient care outcomes supporting the legislation.
The importance of federal parity and state parity legislation has grown dramatically with the passage of the recent healthcare reform law, which permits health insurers to sell across state lines under "health insurance compacts." These multi-state arrangements allow the insurer to select the lowest common regulatory denominator. It is feared that states without parity laws would often be the insurer's regulatory venue of first choice. This choice would, in effect, rescind or override any parity laws that may have been passed in other states served by the "health insurance compact." This makes federal parity and state parity laws virtually indispensable, both in filling the gaps created by self-insured employers regulated by ERISA that are unaffected by state laws as well as reinforcing existing state laws that govern state-regulated insurance offerings. [KFG: To sum it up, KS would make a good home for those trying to dodge the state parity laws - then everyone could get the same treatment I get!]
The House P&O bill, HR 2575, was introduced last year by Representatives Rob Andrews (D-NJ) and George Miller (D-CA), who is also chair of the Education and Labor Committee.
We have strong bipartisan, chief sponsors of our Senate and House bills.
Senator Snowe said the following about the Senate bill:
"Our legislation will ensure that group health plans treat coverage of such prosthetics and custom orthotics on par with other essential medical care covered by health insurance. Providing more meaningful coverage is particularly essential for children, who may require more frequent replacements as they grow."
Senator Harkin added:
"Hundreds of thousands of Americans living with limb loss are currently required by their insurance companies to pay out-of-pocket for prosthetic devices that are integral to their daily lives. While most insurance companies cover prosthetics and orthotics, there are many instances where the benefits are arbitrarily capped or exclusions are imposed on those who need them. This legislation will require insurance companies to provide the same benefits for prosthetic devices as they do for other treatments, helping individuals with disabilities more fully participate in school, work and community activities."
Representative Andrews said the following about the House bill:
"By expanding coverage for prosthetic devices so that it is on par with other types of essential care, not only will amputees receive necessary treatment and experience better quality of life, but the healthcare industry as a whole will save money. Since prosthetics often dramatically decrease secondary health problems for those in need, the benefits of this coverage far outweigh the costs in the long run."
At this critical point, with a House bill and now a Senate bill both introduced, the ACA is gearing up grassroots activities and has a call to action for you to contact your member of Congress and ask him/her to sign as a cosponsor of the bill.
Saturday, April 10, 2010
Two things
I'll admit I've not spent much time here lately but two things caught my eye this week. First, there's an interesting and detailed summary of what it took to get prosthetic parity - not true parity, but a compromise - through Virginia. If you're interested, you can read it here: click me
This paragraph hit home: One of the reasons for the Advisory Commission's recommendation was the extremely positive report prepared by the Joint Legislative Audit and Review Commission. The JLARC report cited among other things 1) it was a reasonable presumption that amputees deserved to receive reimbursement from their health insurance for prosthetic care, 2) amputees who received the prosthetic care they needed were likely to return to life as productive members of society which could in turn save the state's social assistance programs, 3) the projected cost for the proposed coverage would be about .24 cents per month.
It is a very frank report and brings home why I cannot single handedly bring prosthetic parity to KS. Nevermind that niggly detail, you know, the fact that I don't live in KS. Apparently I'm the only person working for KS who can't get insurance coverage for their prosthetic. Hmmm...who knew?
Then there's this especially hard hitting essay by Jothy Rosenberg about the indignity of going through airport security. It had my stomach tied up in knots by the time I was done reading. I've experienced the same embarassment and humiliation in airports and try to laugh it off. Ha-ha! Isn't it funny being an amputee and stripping down for the Looky-Lu's! There's nothing more fun than being the freak in the freak-show! Well, it isn't funny and it wears a body down. Between the humilation of baring your soul begging for a leg to stand on and baring your butt in airport security to total strangers it's more than I can stomach anymore.
Unless I find some new motivation or inspiration, I'm taking a breather.
This paragraph hit home: One of the reasons for the Advisory Commission's recommendation was the extremely positive report prepared by the Joint Legislative Audit and Review Commission. The JLARC report cited among other things 1) it was a reasonable presumption that amputees deserved to receive reimbursement from their health insurance for prosthetic care, 2) amputees who received the prosthetic care they needed were likely to return to life as productive members of society which could in turn save the state's social assistance programs, 3) the projected cost for the proposed coverage would be about .24 cents per month.
It is a very frank report and brings home why I cannot single handedly bring prosthetic parity to KS. Nevermind that niggly detail, you know, the fact that I don't live in KS. Apparently I'm the only person working for KS who can't get insurance coverage for their prosthetic. Hmmm...who knew?
Then there's this especially hard hitting essay by Jothy Rosenberg about the indignity of going through airport security. It had my stomach tied up in knots by the time I was done reading. I've experienced the same embarassment and humiliation in airports and try to laugh it off. Ha-ha! Isn't it funny being an amputee and stripping down for the Looky-Lu's! There's nothing more fun than being the freak in the freak-show! Well, it isn't funny and it wears a body down. Between the humilation of baring your soul begging for a leg to stand on and baring your butt in airport security to total strangers it's more than I can stomach anymore.
Unless I find some new motivation or inspiration, I'm taking a breather.
Thursday, January 21, 2010
One small step for health care reform, One giant leap for prosthetic parity...
Doesn't look like the health care bill is going to get passed anytime soon so here's the perfect solution...
Pass HR 2575, the federal prosthetic parity bill.
Think about it. Over 1.7 million people in the US have lost a limb. Losing a limb is catastrophic and when your insurance company considers a limb prosthesis a convenience or a luxury item (yet covers prosthetic breasts and penile implants) it is emotionally, physically and financially devastating for millions of families.
You want tax dollars? Put people in limbs and get them back to work. You want to reduce the drain on state coffers for vocational rehabilitation and welfare? Put people in the proper prosthetic, the one prescribed by their health care professional, and get them back to work. Do you want determined, gritty, can-do people in your workforce? Hire an amputee. This bill doesn't cost money, it saves money. It's a no brainer. Get behind it and pass it.
Speaking of getting behind HR 2575... much to my delight and surprise, I found that Jerry Moran (R-KS, 1st district) co-sponsored HR 2575! Thank you Representative Moran! If he's in your district, or even if he isn't, give him a pat on the back.
Just for fun, I started looking into other state-managed employee health care plans to see if any other states, like Kansas, use the same discriminatory language to limit prosthetic coverage for their employees. So far I've checked Nebraska, Iowa, Minnesota, Ohio and Mississippi. Nope. All covered under medical and many with maximum out-of-pocket ranging about $2,000. Interesting.
More to come.
Pass HR 2575, the federal prosthetic parity bill.
Think about it. Over 1.7 million people in the US have lost a limb. Losing a limb is catastrophic and when your insurance company considers a limb prosthesis a convenience or a luxury item (yet covers prosthetic breasts and penile implants) it is emotionally, physically and financially devastating for millions of families.
You want tax dollars? Put people in limbs and get them back to work. You want to reduce the drain on state coffers for vocational rehabilitation and welfare? Put people in the proper prosthetic, the one prescribed by their health care professional, and get them back to work. Do you want determined, gritty, can-do people in your workforce? Hire an amputee. This bill doesn't cost money, it saves money. It's a no brainer. Get behind it and pass it.
Speaking of getting behind HR 2575... much to my delight and surprise, I found that Jerry Moran (R-KS, 1st district) co-sponsored HR 2575! Thank you Representative Moran! If he's in your district, or even if he isn't, give him a pat on the back.
Just for fun, I started looking into other state-managed employee health care plans to see if any other states, like Kansas, use the same discriminatory language to limit prosthetic coverage for their employees. So far I've checked Nebraska, Iowa, Minnesota, Ohio and Mississippi. Nope. All covered under medical and many with maximum out-of-pocket ranging about $2,000. Interesting.
More to come.
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