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.
Wednesday, January 14, 2009
Tuesday, January 13, 2009
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
Saturday, January 10, 2009
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.
Friday, January 2, 2009
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!
Tuesday, December 30, 2008
When I had two legs - warning - nude photo!
This is before all the trouble started. I was considerably older before I appreciated what my parents must have gone through. Does she have polio? Is she retarded? What's wrong with her? My father honed my sense of humor - my mother fielded questions with barbed comments, stuck with me through countless operations, prosthetic appointments and saved my knee. I don't know where she found the strength but I'll always admire her for it.
Monday, December 29, 2008
Where am I?
I took some time off around Christmas. During that time I had a chance to reflect on this blog. Yeah sure, it's all about the fight for prosthetic parity, but somehow, I was getting lost in the whole thing. First, I hate writing about my personal battle (boring!), second, I've lost my sense of humor and finally, staying angry and upset and fighting is draining. That doesn't mean I'm through fighting, I'm just going to do it with a sense of humor.
I'll be back after the first of the year. Stay tuned,
KFG
I'll be back after the first of the year. Stay tuned,
KFG
Saturday, December 20, 2008
I see the future...
...and it ain't pretty.
I think the chances of KHPA/HCC having a meeting in December to change the contract are slim to none. Either that or they had their meeting and didn't invite me. Damn. You think?
Well, look on the bright side. The contract language is so outrageous that it makes them an easy target. That and their incredible lack of response to my letters. For months, the response of Blue Cross and Blue Shield of Kansas and the Kansas State Employee Health Policy Authority have said, THERE'S NOTHING WE CAN DO. IT'S OUT OF OUR HANDS. IT'S TOTALLY IN THE HANDS OF THE KANSAS HEALTH CARE COMMISSION. WRITE THEM! STOP BOTHERING US! What they neglect to tell you is that writing Health Care Commission (HCC) is the equivalent of pissing in the wind. Of course, that's their intention, in hopes you'll just go away.
Well, we wrote. We wrote and wrote and wrote and wrote and wrote and wrote and wrote and... did anyone get a reply? I haven't, and I'm at the center of this thing. If you got a reply, go out and frame it because you must be especially privileged. I haven't gotten a single reply or even the time of day except from one frantic phone call promising me everything would be set right at the December meeting (in response to the news that we were going to air a Call for Action report). The meeting and the promises have all vanished in a puff of smoke.
Go rent the movie, "Sicko" if you want to see the state of our Nation's Health care. If you aren't sick now, you will be after you watch it. Whatever you do, don't actually get sick, especially if you have health insurance, because you'll find out soon that you don't always get what you pay (and pay and pay) for.
Happy New Year!
I think the chances of KHPA/HCC having a meeting in December to change the contract are slim to none. Either that or they had their meeting and didn't invite me. Damn. You think?
Well, look on the bright side. The contract language is so outrageous that it makes them an easy target. That and their incredible lack of response to my letters. For months, the response of Blue Cross and Blue Shield of Kansas and the Kansas State Employee Health Policy Authority have said, THERE'S NOTHING WE CAN DO. IT'S OUT OF OUR HANDS. IT'S TOTALLY IN THE HANDS OF THE KANSAS HEALTH CARE COMMISSION. WRITE THEM! STOP BOTHERING US! What they neglect to tell you is that writing Health Care Commission (HCC) is the equivalent of pissing in the wind. Of course, that's their intention, in hopes you'll just go away.
Well, we wrote. We wrote and wrote and wrote and wrote and wrote and wrote and wrote and... did anyone get a reply? I haven't, and I'm at the center of this thing. If you got a reply, go out and frame it because you must be especially privileged. I haven't gotten a single reply or even the time of day except from one frantic phone call promising me everything would be set right at the December meeting (in response to the news that we were going to air a Call for Action report). The meeting and the promises have all vanished in a puff of smoke.
Go rent the movie, "Sicko" if you want to see the state of our Nation's Health care. If you aren't sick now, you will be after you watch it. Whatever you do, don't actually get sick, especially if you have health insurance, because you'll find out soon that you don't always get what you pay (and pay and pay) for.
Happy New Year!
Tuesday, December 2, 2008
KFG on "Call for Action" - NBC Action News Report
Kudos to Jenn Strathman for an excellent job of reporting. You can read or watch the video at this link. There are less than 2 weeks to change a policy that considers the standard of care to be a "deluxe" item. In response to our pressure, the policy makers made the 2009 contract even more exclusive. In 2009, even comfort and convenience will be considered a "luxury." Of course, there is nothing convenient about an artificial limb, just as there are no "deluxe" components. These are arbitrary designations used by policy makers to weasel out of having to cover prosthetics for amputees. As a lifetime amputee, I can see how ridiculous and outrageous this is, but imagine if you just lost your leg, or if your child lost their leg and you came across these barriers. On top of struggling to learn to walk with a prosthesis, you have to fight your insurance company for a leg to stand on.
Of course there is never enough time, even in an extended interview, to tell the whole story. Some comments to the effect of "well, the hydraulic knee is good enough for me" or "it's not easy" are all very true. That's not what this is about.
This is about getting what is prescribed for you. Microprocessor knees are not suited for every amputee. Some amputees don't like them. What we must always consider is the amputee and what meets their functional needs. The simple hydraulic knee works really well for some people. Unfortunately, it did not work well for me, probably due to my size. I've had an opportunity to use both the hydraulic knee and the C-leg and (for me) there is no comparison. I've regained a normal gait, strength, some proprioception and my muscle mass was restored in the residual limb. I can walk farther with less fatigue. I've regained confidence in walking without having to plan every single step, I can look up and talk to people when I walk instead of staring at my feet, gauging the tilt of the ground and spotting what might trip me up. I can step to the side without falling. I can step backwards without falling. I can hold an infant without wondering where my foot is and whether my knee is going to collapse. I can walk down inclines without having to worry about whether my foot is directly in front of me and my weight is aligned perfectly over the center of the knee so that the hydraulics are engaged. If not, then you fall down in a heap! Instead of thinking that life as I knew it is over, I feel like my old self again! No boundaries!
Was the hydraulic knee "good enough?" Well, yes, it's better than no prosthesis at all, but that's not the point. The point is that there are prosthetic options that are considered standard of care. Indeed, so standard, that Medicare, Medicaid and the VA provide these medical options to patients whose physicians prescribe the appropriate prosthesis for their patient's functional needs. It should be up to the amputee and their care team to determine what is the best fit - not policy makers and bean counters.
Many thanks to all of you - friends, relatives, people I've never met - it all started with the "Leg Up" campaign. It's not over - keep fighting!
Of course there is never enough time, even in an extended interview, to tell the whole story. Some comments to the effect of "well, the hydraulic knee is good enough for me" or "it's not easy" are all very true. That's not what this is about.
This is about getting what is prescribed for you. Microprocessor knees are not suited for every amputee. Some amputees don't like them. What we must always consider is the amputee and what meets their functional needs. The simple hydraulic knee works really well for some people. Unfortunately, it did not work well for me, probably due to my size. I've had an opportunity to use both the hydraulic knee and the C-leg and (for me) there is no comparison. I've regained a normal gait, strength, some proprioception and my muscle mass was restored in the residual limb. I can walk farther with less fatigue. I've regained confidence in walking without having to plan every single step, I can look up and talk to people when I walk instead of staring at my feet, gauging the tilt of the ground and spotting what might trip me up. I can step to the side without falling. I can step backwards without falling. I can hold an infant without wondering where my foot is and whether my knee is going to collapse. I can walk down inclines without having to worry about whether my foot is directly in front of me and my weight is aligned perfectly over the center of the knee so that the hydraulics are engaged. If not, then you fall down in a heap! Instead of thinking that life as I knew it is over, I feel like my old self again! No boundaries!
Was the hydraulic knee "good enough?" Well, yes, it's better than no prosthesis at all, but that's not the point. The point is that there are prosthetic options that are considered standard of care. Indeed, so standard, that Medicare, Medicaid and the VA provide these medical options to patients whose physicians prescribe the appropriate prosthesis for their patient's functional needs. It should be up to the amputee and their care team to determine what is the best fit - not policy makers and bean counters.
Many thanks to all of you - friends, relatives, people I've never met - it all started with the "Leg Up" campaign. It's not over - keep fighting!
Saturday, November 22, 2008
Notable Upcoming Events
November 26 - I'm driving to Hays, KS to meet with KS State Senator, Janis Lee. Bob Barker of WKLLSG has organized this meeting. Our goal is to work with Senator Lee to further prosthetic parity legislation for KS.
December 2nd at 10:00 PM - My "Call for Action" interview airs on Kansas City's NBC Action News. We'll provide a link to the webcast after it's up for those of you who won't see it locally.
December 2nd at 10:00 PM - My "Call for Action" interview airs on Kansas City's NBC Action News. We'll provide a link to the webcast after it's up for those of you who won't see it locally.
Friday, November 14, 2008
Great story on NPR
Here's a great story that ran on NPR's market place in 2006. Yes, that's nearly 3 years ago; back in the dark ages when only 3 states had passed parity laws. Now there are 11 states with more states coming on board plus Federal bills in the house and senate. The argument from the insurance industry is that "The weight of these mandates has made it impossible for some employers to be able to afford to provide health benefits at all. What we need is more research!" Well, folks, here's the power of looking backwards. More research since 2006 has shown that the cost of providing prosthetics on par with other medical coverage will cost the consumer about 25 cents a month. Woo. Then again, maybe they could trim some from the CEO's salary?
Monday, November 10, 2008
Congratulations to...
...KS State Senator Janis Lee on her re-election. Senator Lee has taken the time to listen to the need for prosthetic parity legislation in the state of KS.
...Congressman Dennis Moore on his re-election. His office has taken the time and effort to inquire about my "situation" and hit the same stone wall I did. Congressman Moore...please support HR 5615 and add your name as a Co-sponsor of this bill.
...Congressman Emanual Cleaver on his re-election. Hey - I voted for you just so I could keep nagging you about co-sponsoring HR 5615. My letters to your office are ignored. Well, except for the one where you told me you would support the mental health parity bill when I said PROSTHETIC parity. The mental health bill sweetened the pot for the bailout, so that's done and all behind us. Come on. Congressman Lacey in St. Louis is a co-sponsor. We look like slackers here in KC.
Speaking of slackers...there's not a single Kansas representative or senator listed as a co-sponsor in support of HR 5615 or S 3517! Want to see if your senator or representative is listed? Look here. Get after them! The election is over. Time to get back to work!
...Congressman Dennis Moore on his re-election. His office has taken the time and effort to inquire about my "situation" and hit the same stone wall I did. Congressman Moore...please support HR 5615 and add your name as a Co-sponsor of this bill.
...Congressman Emanual Cleaver on his re-election. Hey - I voted for you just so I could keep nagging you about co-sponsoring HR 5615. My letters to your office are ignored. Well, except for the one where you told me you would support the mental health parity bill when I said PROSTHETIC parity. The mental health bill sweetened the pot for the bailout, so that's done and all behind us. Come on. Congressman Lacey in St. Louis is a co-sponsor. We look like slackers here in KC.
Speaking of slackers...there's not a single Kansas representative or senator listed as a co-sponsor in support of HR 5615 or S 3517! Want to see if your senator or representative is listed? Look here. Get after them! The election is over. Time to get back to work!
Many Updates
There's been so much going on that it's hard to keep up:
October 6th - Dave and I celebrated our 20th wedding anniversary. Wow. What a milestone!
October 9th - Work related: received an incredible score on my grant proposal! Unless the economy goes completely belly up the grant will be funded in April for 2 years. Of course, a year from now I'll be writing the 5 year proposal. Given the enthusiasm expressed by the reviewers, I'm hoping this will keep me busy for a few years. Ironically, while telling a friend about this, he said, "Gee, so now you are out earning money that will get your salary off the state budget and yet the state can't find it's way to getting you the leg prescribed for you?" Hmm...there's a point.
October 17 - The State insurance commission writes and says that my insurance policy is a self-funded program administered by BCBS of KS and sponsored by the State of KS and as such, the KS Insurance Department does not have regulatory authority over this matter. More regrets, the usual. However, they did ask questions of BCBS and got the usual response (no!) and BCBS "certainly does sympathize with Ms. Gustafson's situation." My "situation!" OK - that's novel. The commission asked specifically what was prescribed and BCBS danced around that one too. Then they went on to say that they are "responsible stewards of all our customer's health care dollars" and that they have a responsibility to ensure that only medically appropriate and eligible benefits under their contracts are reimbursed. Well, now I feel MUCH better knowing that they're looking after my health care dollars. Whew! We'll just ignore the fact that the medically appropriate prosthesis was prescribed and you'll get what KHPA/HCC thinks you need and like it.
At least somebody finally 'fessed up that it's all about the dollars!
October 30th - One year anniversary of my amputation. So...how do I feel about that? Frankly, like I got more than I bargained for. I really expected to be farther along, more like...normal? I went out to dinner with my best friend, Jeannine, to a nice French restaurant "Le Fou Frog." Jeannine graciously treated me to dinner and reminded me how far I had come in a year. I guess it makes a difference which side of the table you're sitting on. From my perspective, everything is still awkward. What really cost me were the months sitting around in the test socket waiting for KHPA to come through. When I finally realized that they weren't losing any sleep over me my physical condition had decayed. When I got the C-leg, I started walking again and then my residual limb started bulking up. ARGH! Months of shrinking since the surgery and then it goes the opposite way! Now I have a whole new set of problems. While the C-leg is wonderful, the socket is literally squeezing the life out of me. For a while my leg was turning blue and cold. We've done some tweaking and now I'm only miserable from early morning until about 4 PM. The scary part is that I'm not even remotely close to being as fit as I used to be so it's back to physical therapy and with that, more bulk, more squeezing and heaven forbid, what if I have to get a bigger socket?! Is that a convenience item? After all, circulation is comfortable. Gosh...I don't know, should I just wait until my leg turns black and falls off?
November 4 - The December 3rd meeting at KHPA has been cancelled because most of the members can't make the meeting. There's supposed to be an alternative date announced...soon? I suggested that some of the members come to KC to learn more about prosthetics since I attended an excellent seminar on rehabilitation of the lower limb amputee and I thought some very valuable points were made. After all, it's better to make informed decisions. Nope, they prefer to get guidance on medical necessity from the health plans they contract with. Wow...doesn't this drive home who is making health plan decisions for you?
On that note, I attended a meeting to discuss a national health care plan. Frankly, the thought of a government controlled health care plan gives me the willies because...HELLO...isn't that what I have?! However, after listening to all sorts of horrible stories from private insurance, etc., it's clear that whatever it is we're doing isn't working. What I don't get is why, if my health insurance were Medicaid, Medicare or VA, I wouldn't be having this discussion because the prescribed prosthesis would be covered. So, what's the deal?
We're really not much further than we were a month ago. The arbitrary and utterly ridiculous language in the contract has to be changed. To selectively deny amputees access to technology that, at best, restores function to about 30% of the lost limb and then to insult us by saying that "comfort and convenience" are luxury items is discrimination, pure and simple.
October 6th - Dave and I celebrated our 20th wedding anniversary. Wow. What a milestone!
October 9th - Work related: received an incredible score on my grant proposal! Unless the economy goes completely belly up the grant will be funded in April for 2 years. Of course, a year from now I'll be writing the 5 year proposal. Given the enthusiasm expressed by the reviewers, I'm hoping this will keep me busy for a few years. Ironically, while telling a friend about this, he said, "Gee, so now you are out earning money that will get your salary off the state budget and yet the state can't find it's way to getting you the leg prescribed for you?" Hmm...there's a point.
October 17 - The State insurance commission writes and says that my insurance policy is a self-funded program administered by BCBS of KS and sponsored by the State of KS and as such, the KS Insurance Department does not have regulatory authority over this matter. More regrets, the usual. However, they did ask questions of BCBS and got the usual response (no!) and BCBS "certainly does sympathize with Ms. Gustafson's situation." My "situation!" OK - that's novel. The commission asked specifically what was prescribed and BCBS danced around that one too. Then they went on to say that they are "responsible stewards of all our customer's health care dollars" and that they have a responsibility to ensure that only medically appropriate and eligible benefits under their contracts are reimbursed. Well, now I feel MUCH better knowing that they're looking after my health care dollars. Whew! We'll just ignore the fact that the medically appropriate prosthesis was prescribed and you'll get what KHPA/HCC thinks you need and like it.
At least somebody finally 'fessed up that it's all about the dollars!
October 30th - One year anniversary of my amputation. So...how do I feel about that? Frankly, like I got more than I bargained for. I really expected to be farther along, more like...normal? I went out to dinner with my best friend, Jeannine, to a nice French restaurant "Le Fou Frog." Jeannine graciously treated me to dinner and reminded me how far I had come in a year. I guess it makes a difference which side of the table you're sitting on. From my perspective, everything is still awkward. What really cost me were the months sitting around in the test socket waiting for KHPA to come through. When I finally realized that they weren't losing any sleep over me my physical condition had decayed. When I got the C-leg, I started walking again and then my residual limb started bulking up. ARGH! Months of shrinking since the surgery and then it goes the opposite way! Now I have a whole new set of problems. While the C-leg is wonderful, the socket is literally squeezing the life out of me. For a while my leg was turning blue and cold. We've done some tweaking and now I'm only miserable from early morning until about 4 PM. The scary part is that I'm not even remotely close to being as fit as I used to be so it's back to physical therapy and with that, more bulk, more squeezing and heaven forbid, what if I have to get a bigger socket?! Is that a convenience item? After all, circulation is comfortable. Gosh...I don't know, should I just wait until my leg turns black and falls off?
November 4 - The December 3rd meeting at KHPA has been cancelled because most of the members can't make the meeting. There's supposed to be an alternative date announced...soon? I suggested that some of the members come to KC to learn more about prosthetics since I attended an excellent seminar on rehabilitation of the lower limb amputee and I thought some very valuable points were made. After all, it's better to make informed decisions. Nope, they prefer to get guidance on medical necessity from the health plans they contract with. Wow...doesn't this drive home who is making health plan decisions for you?
On that note, I attended a meeting to discuss a national health care plan. Frankly, the thought of a government controlled health care plan gives me the willies because...HELLO...isn't that what I have?! However, after listening to all sorts of horrible stories from private insurance, etc., it's clear that whatever it is we're doing isn't working. What I don't get is why, if my health insurance were Medicaid, Medicare or VA, I wouldn't be having this discussion because the prescribed prosthesis would be covered. So, what's the deal?
We're really not much further than we were a month ago. The arbitrary and utterly ridiculous language in the contract has to be changed. To selectively deny amputees access to technology that, at best, restores function to about 30% of the lost limb and then to insult us by saying that "comfort and convenience" are luxury items is discrimination, pure and simple.
Sunday, October 19, 2008
Petition for KS Residents
If you're a resident of KS, please sign the petition to change the KS State Employee Health Policy prosthetic coverage so that it's on par with Medicare and State Medicaid. You can find the link here. Thanks go to Bob Barker of the Western KS Limb Loss Support Group for starting the petition drive. We need 10,000 signatures by December 15, 2008.
Saturday, October 11, 2008
Time is running out
We must get this policy changed before the new contract year! Here is a new letter for KS residents. Don't forget to change the text in [red]:
[Date]
Duane A. Goossen, Chair and Secretary of Administration
Kansas Health Care Commission
Room 900-N, Landon State Office Building
900 SW Jackson Street - Topeka, KS 66612
Dear Mr. Goossen,
By now you are aware of the limitations in the state employee health care plan regarding prosthetic coverage for amputees. Despite our efforts to change the restrictions facing state employee amputees, the contract reads:
"Coverage is limited to the basic (standard) appliance or device which will restore the body part or function. 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, 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."
The wording in the contract is identical to the limitations placed on durable medical equipment (DME) despite assurances from KHPA that limb prostheses are under medical coverage. There is nothing deluxe, luxurious, comfortable, performance enhancing or convenient about a prosthetic limb. Who determines whether a prosthesis is comfortable or convenient and thereby denied? It reflects badly on the state of Kansas when state employees are not afforded the same quality of prosthetic care as KS Medicaid recipients.
At the present time, it is illegal in 17 states to sell policies having such arbitrary exclusions and parity laws are pending in 30 additional states. Federal legislation has been introduced in the House and Senate to make coverage at least equal to that offered by Medicare as a national requirement.
Please change this policy language before the beginning of the new contract year.
Sincerely,
[Your name and address]
Cc: Governor Mark Parkinson
Capitol, 300 SW 10th Ave., Ste. 212S
Topeka, KS 66212-1590
Doug Farmer
KHPA – State Employee Benefits Plan
Room 900-N, Landon State Office Bldg.
900 SW Jackson Street
Topeka, Kansas 66612
[Date]
Duane A. Goossen, Chair and Secretary of Administration
Kansas Health Care Commission
Room 900-N, Landon State Office Building
900 SW Jackson Street - Topeka, KS 66612
Dear Mr. Goossen,
By now you are aware of the limitations in the state employee health care plan regarding prosthetic coverage for amputees. Despite our efforts to change the restrictions facing state employee amputees, the contract reads:
"Coverage is limited to the basic (standard) appliance or device which will restore the body part or function. 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, 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."
The wording in the contract is identical to the limitations placed on durable medical equipment (DME) despite assurances from KHPA that limb prostheses are under medical coverage. There is nothing deluxe, luxurious, comfortable, performance enhancing or convenient about a prosthetic limb. Who determines whether a prosthesis is comfortable or convenient and thereby denied? It reflects badly on the state of Kansas when state employees are not afforded the same quality of prosthetic care as KS Medicaid recipients.
At the present time, it is illegal in 17 states to sell policies having such arbitrary exclusions and parity laws are pending in 30 additional states. Federal legislation has been introduced in the House and Senate to make coverage at least equal to that offered by Medicare as a national requirement.
Please change this policy language before the beginning of the new contract year.
Sincerely,
[Your name and address]
Cc: Governor Mark Parkinson
Capitol, 300 SW 10th Ave., Ste. 212S
Topeka, KS 66212-1590
Doug Farmer
KHPA – State Employee Benefits Plan
Room 900-N, Landon State Office Bldg.
900 SW Jackson Street
Topeka, Kansas 66612
Friday, October 10, 2008
Bob Rocks!
Bob Barker is an activist for prosthetic parity. He was instrumental in passing the parity law in Massachusetts and then moved to KS. Lucky us! Visit his site to learn what you need to do as a KS citizen to bring prosthetic parity legislation to KS.
Wednesday, October 8, 2008
Pinched
What a crazy ride I'm on.
KHPA communications now contain language with words like "hope-wish-try" and the December HCC meeting "might" deal with prosthetics but now, even that sounds iffy. I'm not supposed to take the new contract language personally, but what's a person to think after months of communication - OK, I'll admit it was pretty one-sided communication - and then the contract language is reworded to become more arbitrary, archaic and capricious? We do get a $40 a month discount for not smoking though. At that rate, I should be able to recover the cost of the C-leg in about...375 months or a little over 31 years. Fortunately, I'll be eligible for Medicare before then.
The good news is that the KS parity activists, led by Bob Barker, now have their teeth in this thing and it's not just me, the annoying voice in the background. The more the merrier - party on, people.
All of this detracts from the joy of the new leg and there are some shining moments. The down side is that I have developed some bad habits from the old leg that I have to overcome. Fear of falling is the biggest and that keeps me from using the C-leg as it's designed. The socket is still giving me grief - seems I might have *gasp* stopped shrinking so there's this constant argument about who is going to conform first? My leg or the socket? Flesh or carbon fiber? Logic says flesh, but suddenly my flesh is no longer weak and is fighting back. Nonetheless, I've had a few glorious moments where everything worked perfectly and I saw my reflection in a glass window as I walked by. Beautiful! I couldn't believe I was walking so well! I know it's there, it will just take me a while to gain control.
So...sadly, I think we're back to square 1 in our fight with HCC/KHPA/BCBS of KS. I got that 800 pound gorilla off my back for about 24 hours, but it's back now!
KHPA communications now contain language with words like "hope-wish-try" and the December HCC meeting "might" deal with prosthetics but now, even that sounds iffy. I'm not supposed to take the new contract language personally, but what's a person to think after months of communication - OK, I'll admit it was pretty one-sided communication - and then the contract language is reworded to become more arbitrary, archaic and capricious? We do get a $40 a month discount for not smoking though. At that rate, I should be able to recover the cost of the C-leg in about...375 months or a little over 31 years. Fortunately, I'll be eligible for Medicare before then.
The good news is that the KS parity activists, led by Bob Barker, now have their teeth in this thing and it's not just me, the annoying voice in the background. The more the merrier - party on, people.
All of this detracts from the joy of the new leg and there are some shining moments. The down side is that I have developed some bad habits from the old leg that I have to overcome. Fear of falling is the biggest and that keeps me from using the C-leg as it's designed. The socket is still giving me grief - seems I might have *gasp* stopped shrinking so there's this constant argument about who is going to conform first? My leg or the socket? Flesh or carbon fiber? Logic says flesh, but suddenly my flesh is no longer weak and is fighting back. Nonetheless, I've had a few glorious moments where everything worked perfectly and I saw my reflection in a glass window as I walked by. Beautiful! I couldn't believe I was walking so well! I know it's there, it will just take me a while to gain control.
So...sadly, I think we're back to square 1 in our fight with HCC/KHPA/BCBS of KS. I got that 800 pound gorilla off my back for about 24 hours, but it's back now!
Wednesday, October 1, 2008
My Hair is on Fire!!
Today is October 1st, the day they roll out the insurance contract for 2009. There was ambiguous language in the '08 contract regarding prosthetics. I had several discussions about this with KHPA and was assured that it would be made "more clear" for '09. Still giddy from my phone call last night, but also realizing that the contract was written LONG before my phone call, I didn't expect a revision in my favor. Instead, what I found made it abundantly clear that the discrimination towards amputees continues:
"Coverage is limited to the basic (standard) appliance or device which will restore the body part or function. 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, 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."
You talking to ME?!
I feel really ripped off. I wanted the performance enhancing, comfort model with the convenience features, luxury socket, deluxe-enhanced toes and all I got after paying 25% of my after-tax, after-insurance-premium annual salary was this microprocessor. Dang.
I feel really ripped off. I wanted the performance enhancing, comfort model with the convenience features, luxury socket, deluxe-enhanced toes and all I got after paying 25% of my after-tax, after-insurance-premium annual salary was this microprocessor. Dang.
Tuesday, September 30, 2008
Pinch me...
I've gotten so far behind. Here's a quick update.
Went to Winfield had more fun than seemed possible came home decided my quality of life is more important than anything so got the C-leg ... what? Yes, I did it. As in, I got out the checkbook and started signing. I have no right to appeal unless I pay out of pocket, so this really begins the process. How is it? Nothing short of a miracle. It will take a few weeks for me to "settle in" to the new socket but already it's so far and above what I've put up with for a year that I've worn myself out. "Look - I can sit, stand, move, walk without thinking or looking at the ground!" When I get it under control, I'll post a video and some photos.
But, now for the really big news.
A friend sent my blog to another friend who contacted the local "Call for Action" reporter who called me about a potential story. That resulted in me contacting our (work) public affairs director who contacted the director of KHPA and, after months of nonsense and frustration. I finally, FINALLY got the straight story. It took a total of 4 women a matter of 6 hours to cut to the chase! The director of KHPA, Marci Nielsen, called, apologized and listened. KHPA and HCC are going to meet in December to discuss revising their prosthetic policy to match that of Medicare (the industry standard) which includes electronic components. If they have all their ducks in a row, this could be decided as early as December '08 and no later than April '09.
Given what I know about Medicare coverage, there is a very good chance that this will pass. I'm afraid to say much more for fear of jinxing it, but this most informative, cohesive and encouraging news I've received to date!
Thank you - all of you - for your support and the "leg up." It's not over but I think the ball is finally rolling in the right direction! Of course, you're all welcome to join me at the meeting in December!
Went to Winfield had more fun than seemed possible came home decided my quality of life is more important than anything so got the C-leg ... what? Yes, I did it. As in, I got out the checkbook and started signing. I have no right to appeal unless I pay out of pocket, so this really begins the process. How is it? Nothing short of a miracle. It will take a few weeks for me to "settle in" to the new socket but already it's so far and above what I've put up with for a year that I've worn myself out. "Look - I can sit, stand, move, walk without thinking or looking at the ground!" When I get it under control, I'll post a video and some photos.
But, now for the really big news.
A friend sent my blog to another friend who contacted the local "Call for Action" reporter who called me about a potential story. That resulted in me contacting our (work) public affairs director who contacted the director of KHPA and, after months of nonsense and frustration. I finally, FINALLY got the straight story. It took a total of 4 women a matter of 6 hours to cut to the chase! The director of KHPA, Marci Nielsen, called, apologized and listened. KHPA and HCC are going to meet in December to discuss revising their prosthetic policy to match that of Medicare (the industry standard) which includes electronic components. If they have all their ducks in a row, this could be decided as early as December '08 and no later than April '09.
Given what I know about Medicare coverage, there is a very good chance that this will pass. I'm afraid to say much more for fear of jinxing it, but this most informative, cohesive and encouraging news I've received to date!
Thank you - all of you - for your support and the "leg up." It's not over but I think the ball is finally rolling in the right direction! Of course, you're all welcome to join me at the meeting in December!
Wednesday, September 24, 2008
Federal Campaign Progress!
Senators Olympia Snowe (R-ME) and Tom Harkin (D-IA) introduced the Senate version of the Prosthetic Parity Bill this month. Legislation is now moving through both chambers. Thank you Carol in Maine and Jackie in Iowa! Your letters made a difference!
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