PSP Association

Anatomy of a Medicare Appeal

It looks like my husband and I are gearing up for a third bout with Medicare. Doing battle with them, however, is not the least bit satisfying because rational thought is not allowed. Where they win the day is in their sheer size and ability to pass the buck long enough to exhaust “we the people.” Pissants all!!!

At issue is my husband Dale’s ride to the hospital on April 1 of this year. I had dialed 9-1-1 after Dale fell for the third time that day, and could no longer help himself off the floor. EMTs arrived at the house, took my husband’s vitals, placed him on a gurney and transported him to the local hospital three miles away. A few weeks later we received a statement for $1267 dollars from the ambulance service provider located in California, who, upon inquiry, informed me that Medicare had denied the claim as “medically unnecessary.”

Since then, I have called Medicare numerous times and each time the dialogue between the rotating staff of Stepford parrots and me goes something like this:

Carla: You do understand that my husband was on the floor unable to get up, don’t you? And yet, you say his trip to the hospital was “medically unnecessary”? Should I have known that? Are lay people now diagnosing health problems?

Bevis/Butthead: Of course not. The EMTs and hospital medical staff make that determination.

Carla: But that’s AFTER the transport has already taken place?

B/B: That is correct.

Carla: Well, if you’re going to penalize Medicare patients after the fact, shouldn’t you at least warn us in advance? Give us the health care equivalent of our Miranda rights?

B/B: We don’t do that.

Carla: Obviously. So tell me, how should my husband have been transported to the hospital?

B/B: He could have taken a taxi, private automobile, wheelchair van or other vehicle.

Carla: But he was on the floor, unable to get up.

B/B: Those are the rules.

Carla: Okay, let’s try this one more time. How could my husband get to, then into any of those other vehicles when he was incapacitated on the floor?

B/B: I don’t know.

Carla: But somehow he was supposed to levitate himself into a different vehicle. By that logic, he could have ridden a horse also – except we don’t have a horse – and HE WAS ON THE FLOOR!

B/B: I know you’re frustrated, but those are the rules.

Carla: Well, change them, or give me someone who can.

B/B: You can appeal. Blah…blah…blah…blah.

Here’s the problem. The government of the people, by the people and for the people has been gasping for air for many years, almost a century, in fact. In its stead is a governmental behemoth that has created burgeoning institutions designed to insinuate themselves into our lives, then take up permanent residence. We the people get stuck with the tab for Uncle Sam’s largesse. But the most gullible among us believe they’re getting a free lunch, so they shrug off a little red tape, a little more infringement on their freedoms, and most of the common sense they ever had.

Uncle’s rules and regulations are so vast and complex as to effectively give the institutions carte blanche to exercise arbitrary judgments on who gets what, when and where. The powers behind the curtain are snake oil salesmen who, in the case of politicians, have lined their pockets by finessing what was intended to be a few years of public service into lifelong careers. (Have you ever counted the number of 70 and 80-year-old fogies in Congress? Meh!) In turn, they insulate themselves with a front line of automatons who spew memorized schlock to the public so they themselves never have to deal with us, the hoi polloi.

At the same time irrational bureaucrats are denying legitimate claims, they’re creating a brouhaha about Medicare fraud. “See it, report it,” they encourage. I’ve no doubt it exists, but who in their right mind thinks ambulances are at the core of the deceit? To the Medicare Gestapo it’s a page out of “Willy Wonka and the Chocolate Factory.” They evidently believe millions of older Americans are plotting to win the golden ticket and get a free ride in an ambulance.

Are they addled? Perhaps they are. Exit Willy Wonka. Enter Forrest Gump in a brown shirt, utterly devoted to his cause, but not having the foggiest notion what the cause is. No sweat. After all, life is a “box of chocolates” and American baby boomers had better get used to it.

24 Replies

Your story is making me feel the frustration I had with Medicare and a home health agency when I was trying to get a simple shower for my husband. I asked the doctor to refer us to the agency for PT and OT. They came and set up their goals. (You can't get an aide without OT to supervise) Of course my husband could not meet their goals as he is going downhill progressively. He isn't regaining lost skills. So the agency said they could not continue to come. We never did get that shower.

I called Medicare with our problem. The representative said there was no such "rule" that my husband had to meet their goals - as long as the doctor has given the order. When I called the agency they agreed with Medicare that there was no "rule" like that, but that Medicare used that as a reason to not make payment for insurance submissions. So we were getting our "Miranda Rights" by the agency but still no shower from Medicare.

We muddled along for several months taking terrible risks with my old self giving his old self a shower! Not very often and that made us both frustrated. I hired a private duty aide twice a week finally, just to give him those showers. Now, THANK GOD, hospice has taken him on! He gets wonderful showers three times a week and it only takes about 45 minutes of the aide's time.

I live in a community with volunteer rescue squads. Up until a few months ago, they did not charge for their services. Then they voted to charge to get the Medicare reimbursement to keep afloat. They still will come out to get a patient up off the floor for no charge. God bless them all!

Medicare can be a wonderful program. Hospice is fully paid for! But the rules and regulations are not enforced the same from community to community. So much is left to the arbitrary determination of an individual who can be so callus and mean.


So much is left to the arbitrary determination of an individual who can be so callus and mean.

Precisely, Caroline, and there's probably no cure in the near future, but I'll continue screaming to the rafters.

So very glad Hospice is coming through for you. I always jump for joy on those days when Dale says he'd like to skip a shower.

Most people will never understand the concept of caregiving 24/7. One person I know looks in on her step dad three times a week - may take some food over, ensure he's got food in the house, but overall, she just visits with him for a couple of hours. Now, I'm not criticizing that kindness, but it hardly compares to the 24/7 duty.

It all boils down to the hand we're dealt. We'll not understand the "why" until the Lord explains - on the other side. In my case, I expect He's trying to refine me so I don't get thrown out with the chaff. :)


Dorothy Thompson

I feel your pain but a least here in the UK it is free when we call the paramedics and our hospitals are free, so far so good. But --- when the "officials" of our burgeoning medical bureaucy are involved I have said it before and I will say it again, the are only there to fulfil their particular job title, they never use lateral thinking, never work outside the box because it is not laid down in the manual of State Control, seldom if ever use their own god given initiate because it is so easy to sound sympathetic and make all the right noises but at the end of the day, we are all on our own.

Good luck and good night one and all


Yes, Dorothy, you ain't just whistlin' "Dixie." "It's not my job" could be the motto of most government employees. There are a few good apples, but more often than not, they're either worn down over time and leave for more rewarding pastures, or they themselves become as corrupt as the rest.

God bless, my friend. XO



I feel for you as my wife had to be transported to the hospital as she had severe screaming pain in her left side of her head (she had been suffering from PSP for 8 years) a quick call to 911 resulted in the EMT arriving in 3 minutes and transporting her to hospital. After an hour in the hospital she was diagnosed as having a massive wax buildup in her ear which was pressing against the ear drum and causing the pain. The wax was cleaned out and I drove her home. A week later a bill arrived for the EMT visit and transportation to the hospital. Only $70.00 for this service but as we live in Canada that has high taxes but extremely lower medical costs to the patient is the difference between Canada and the USA. The US health system is not for the patient. I suggest that you do not let your husband walk without your assistance and to use a walker at the same time to prevent future falls as this problem will get worse as time goes by. June also wore a helmet the kind that is used in kick boxing and costs about $20.00. Prior to restricting her unassisted walking June fell various times and 3 falls resulted in emergence room visits to stitch up the cuts to her head. Worse case was 8 stitches. Good luck in the future.



Thanks for the advice, Richard. As of now, Dale no longer walks without an assist. Most of the time he doesn't walk at all.

How is your wife doing now? How are you doing? This disease takes a toll on the whole family, eh?

God bless you.



June passed away in April after 8 years and 2 months of being diagnosed. She spent the entire time at home and passed away in my arms. She was ready to move on.


I'm so very sorry, Richard, about the loss of your beloved June. My thoughts and prayers are with you during this sorrowful time.



It's not just Medicare, folks. My husband (age 64, PSP, unable to walk, vision know the rest), who is in a nursing home, was transported to the hospital by ambulance when his temperature spiked and his blood pressure took a nosedive. His doctor wanted him transported to the ER. My husband was totally unresponsive when EMTs asked him questions and was unable to assist them in moving him from the bed to a gurney. He stabilized while in the ER, and I drove him back to the nursing home that evening.

Well, for some reason his Blue Cross Blue Shield (we pay $1300/mo. premiums for my husband) denied the $864. ambulance charge. The BCBS is from another state, so when I called the originating BCBS, I was told that it must have been the local BCBS that denied it. I called the local BCBS and was told yes, their computer denied it, but it did so based on the criteria that the originating BCBS told their computer to follow.

The ambulance ride was on April 20th. It didn't take long before I began getting nastygrams from the ambulance people, who threatened to turn me over to a collection agency. So, more phone calls to both BCBS locations.

Finally...FINALLY I got a call from the originating BCBS, who said that they had just gotten clearance to go ahead and pay the $864 and their check to the ambulance was dated August 8th.

I guess maybe I should have rented a pickup truck from the local building supply big box store, and slid my husband into the bed of it, and driven him to the hospital myself!!

A piece of advice I got along the way was that you should never - NEVER - get onto the ambulance gurney by yourself. Be on the ground - or wherever - and make them lift you onto the gurney. Getting on the gurney yourself gives the insurance/Medicare an opportunity to deny, deny, deny. (At least that's what an RN I know told me.)

-- Connie


It's a travesty, Connie. We older folks must look like easy pickin's to the shucksters sizing up their next suckers.

Glad you didn't try to hoist your hubby into a pickup bed, though. The EMTs might have had to make two runs to your home. :)

God bless,



Hi Carla48,

As Dorothy says, we are fortunate here in the UK in that we receive free ambulance and medical care, however when it comes to continuing health care we have hoops to go through as well. My husband who has had PSP for about 6-7 years is now unable to do anything for himself, the only good thing is that he able to stand with support still. He has got through the first hoop of the continuing health care assessment, so next week he has the fuller assessment. The person who is going to do it has been in touch and briefly said she would be looking for full reports from my husband's GP and nursing team. Peter's GP has just retired and the new one has only met him once. I know she has all the notes to go from. We don't have any nursing help yet because I was a nurse for over 40 years and can give him all the care he requires but it is getting harder. Interestingly Peter has just come back from a weeks respite care in a local nursing home. Two people were required to move him from bed to chair, shower, toilet etc. At home I do all the care, but I know it is taking its toll on both of us. At times I wonder how long I will be able to keep up this level of care. I'm just praying that he will be deemed suitable for continuing care. The care he received at the home was very good, but it isn't cheap and we won't be able to afford very much respite.

Best wishes to you all

Mary aka Peter3.


Mary, I hope Peter will be granted the continuing care for both your sakes. Caregiving does indeed take a toll on us older gals (I just came in from dragging a heavy watering hose for 150 feet and back).

It also seems like most of us contending with this vicious disease have limited resources, but I know my perspective is limited. We'll keep sharing ideas and hope that some are workable for our respective situations.

God bless,



Hi Mary, I've had computer problems so have only just read this page. Today we had the assessment for continuing health care. We had the assessment to see if we qualified for the full assessment 2 weeks ago and today they started the full assessment by first doing a pre-assessment. We did, so the assessment started. It took 2 hours 45 minutes, 57 pages of questions and comments. It was completed by a lady from Social Services and a nurse from the hospice. They were both very sympathetic and completed the form giving as much information as they can. They now have to obtain reports from the GP, Speech therapist, OT etc, none of whom know the current situation as Colin's condition has changed dramatically during the last few weeks. I showed them 2 of the latest reports we have received and they both said they wouldn't be very helpful as they could see, with Colin in the room, that what they had written was no longer relevant. The annoying thing is that when all this information is collected, it goes before a "panel" of people who have never met Colin or me. I think every member of this sort of panel should be made to care for someone 24 hours a day for at least a week before being allowed to make this kind of decision.

We are praying now that common sense will prevail and continuing healthcare granted so I can get a couple of night's sleep a week., something everyone should have.

Nanna B


Hi Nanna B, I read your reply just after I had posted my last reply to you. The assessor we had didn't give me a copy of the assessment form, fortunately I had got it off the internet so had an idea of what would be covered. She was here for over two hours, was awaiting notes from the GP, and OT, Speech therapist and Physiotherapist, but was not impressed that there were no nursing notes! I also heard quite a bit about how busy she was with other people's assessments and how ours wouldn't get to the panel for at least three weeks because she was having holiday!

I agree with your comment about the panel. Maybe the panel members should spend a day caring for the person concerned with no assistance.

We can only hope that the outcomes our positive for both of us. I think the sense of humour must prevail.

Mary aka Peter3


That's funny because our assessor is on holiday next week as well. I think we have a lot in common. I'll let you know the outcome..........maybe not for a few weeks though.

Nanna B


I found your post funny but sadly true. I can't wait for our new healthcare to kick in. Think it's bad now, just wait. I don't think the general public had even the slightest idea of how the new healthcare will change their lives either medically or financially. Any complaints I get about the new care will receive a hardy laugh in response and the question "What did you expect when the government got involved?". End of soapbox. :) lol


Oh, Jim, I detect a fellow proponent of small government. :) Medicare is bad enough now, but when more funds are siphoned off for O___care, well, Katie, bar the door. I just printed letters to my senators, congressman and Paul Ryan as chairman of the House Budget Committee, TX governor, my mayor and the president of the local hospital. If I get any responses beyond blah, blah, blah, I'll let you know.

God bless you and Shary,



Dear All,

Had a couple of phone calls / emails this morning where I too lost the plot for a while - beauraCRAZZYY gone mad - and thought why should I have to keep going ten steps back to maybe get somewhere.

Then I read your emails and saw I am not alone...Is it a full moon in every part of the world at the moment??

re: Ambulance services GRRRRRHHHH - I have decided when one is required - I will state the reason and the operator will make the determination of what/who/why/how . Apparently, I too do NOT know enough to make a determination if an ambulance is required – as I now am informed that all three emergency services fire/police and ambulance maybe required to assist John. Who is to meet the cost, and explain the use of valuable resources - I don't even want to ask....

Carla, yes start the appeals, but maybe sugar coat it step, by step... Write in third party for the lower common denominator, you can think of. Or maybe not - Who knows??? Unfortunately, it seems - Every infuriating box must be crossed in the same order, in the same place. Then they revisited repeatedly before the possibility of being ticked.

re: counselling does it work like this in other places -

for Chloe - now turns out unless both parents support counselling services for children - one has to fight red tape and apply for 'exceptional ruling and conferences and....' I really did not think it could be this hard...

re: Support services for John - Until now did not envisage would have to sell our home ... I should re-read 'Alice in Wonderland' for I think it now deserves a sequel.... Which publisher should I contact...

You got to laugh or you cry..

I have a friend visiting this evening (I'm her honorary white Sis')- Hawa is Somali and spent many years in refugee camps. She recalls that the mental anguish and pain of having to deal with malaria and corrupt officials was easier than the “autocratic bureaucratic’ ” hoops being encountered at the moment.

When my life goes a little off-track, I recall my high school history lessons – today was akin to Stalin’s seventh seven-year plan for USSR- It was a time of dubiously gauged bureaucratic high productivity with limited personal growth and satisfaction for its people...

Have fun all. Tonight I rest well, for the new begins tomorrow...


Alana Bean - Western Australia

N.B. My daughter just completed a project on the Gates of the Arctic, Alaska - Sounds like a pretty good place to visit around now????

Chloe just suggested she loan out her Rasor Powerwing scooter to the ambulance services - It was a tool we used to get John mobile one day. Yes, the stories to tell great grandchildren one day!!


I was not aware that ambulance services here in Western Australia were so much of a problem for cases like yours. Last year my wife fell and could not move (she was completely incapacitated, and could not speak - just the PSP moaning - she had, in fact, fractured a vertebra). I used her Silver Chain (a nursing service) Alarm, and after describing my wife's condition, they called an ambulance (came within 10 minutes - absolutely wonderful paramedics). I had taken out a form of health cover to pay for such things as ambulance services, but my wife's trip to the hospital (public) and further transfer to another hospital (public) was FREE! (since she has a pension concession card and has a part Centrelink Pension. One can apply for such a pension here in Oz, and they apply an assets and income test, where the home is not included. A retired couple who own their own home can receive a very tiny part pension even with assets up to just over a million $A dollars, so it's very generous - and with the concession card one has multiple benefits).

My brother once said "There's nothing good about old age" and I said, "Except for the discounts!!!"



Dear Strelley,

I probably should explain things further -

I believe the ambulance services we have are absolutely brilliant here for service and attention.

Unfortunately though with my husband there are a miriard of problems associated with his medication, mobility and excessive/incorrect eating for which I have no input. As I found the 'other day' our ambulance services have been called by those if they knew about PSP would probably never have made. As a repercussion when services are needed in the future as well as ambulance, police and fire brigade will probably now also be notified and be called due to John's medication side effects and obesity and problems he has with mobilty equipment. Its a terrible situation, for which I see no end in the near future. And yes, there is a personal financial cost and cost to the general community as a whole.


Alana - Western Australia


Yes, Alana, the moon is full 24/7 and the creatures of the night smell blood in the water. I should tell you that for my first appeal I included a letter from Dale's neurologist stating that Dale has "significant difficulty" with ambulation (he could still take a few steps with a walker then). I also included seven pages of a single-spaced document I'd kept since January 1 of this year, noting every time Dale had fallen and the conditions surrounding them.

As we reached the time for an appeal decision (the feds milk every minute they can to allow for procrastination) Medicare said they still needed the ambulance trip report to make a determination. This was a confirmation to me that these people are "not right." This same report had been used in the initial denial, so if nothing had changed, why would it factor into a different decision.

I can relate to having to sell your home, and I'm so sorry. We are facing the same prospect and are currently researching less expensive states to live in. Will be writing more about this later.

You do have to laugh or cry, and I spend a lot of time doing both. Bet you do, too, friend.




There is clear indication that carer's lives are shortened by the nature of what they are doing. Governments around the world certainly don't help. At a time when we are so involved for caring for our loved ones we also have to go through all the form filling, telephone queries, visits from numerous "professional", appointments, this list is almost endless, no wonder we feel stressed, depressed and overburdened at times whilst watching the PSP victim getting worse and worse. Is it any surprise our health too will suffer.

With PSP I find my husband shows no interest in anything, especially when I try to get help for him. He sadly cannot contribute to any of the form filling or interviews with the community staff. He feels he doesn't need outside help.

A bit of a rant from me, sorry to all of you who have taken the trouble to read this, but since my husband came home from respite care on Monday, I have found it harder to look after him. Now I am feeling guilty for the way I feel. Has anyone else experienced this when the person they care for comes home from respite care?

Mary aka Peter3.


Hi Mary, My husband went to the hospice for 5 nights a few weeks ago and I went out and about during my "break". One visit was to someone I hadn't seen for years, but who used to be a health visitor. She said she visited lots of folk who gave 24/7 care and the only negative thing about respite was how they felt when their loved one came home. They all found it so much harder and felt guilty about how they felt. She was preparing me for how I might feel and I did find it hard when my husband returned. I love him dearly, but it was so much harder when he returned. I'd got out of our routine and everything seemed to take so long. I really thought I may crack. We are back on track however, and my rest is long forgotten, so is my guilt.

Take care.

Nanna B


Hi NannaB, Thank you for your reassuring words. You are right about getting out of the routine when there has been respite. Just being able to get up, have breakfast and go out without a hitch is quite novel and the same can be said about the end of the day. Being able to go to bed when I wanted to and not having to do the lengthy routine to get my husband settled at night. The good news is we also are back on track with the routine and I no longer feel resentful and guilty.

Peter had his CHC assessment this afternoon. He was unable to contribute very much even though he knew exactly what was going on. Peter is now reliant on me for literally everything

but in spite of this, the assessors closing comment was, that whilst the decision to award funding or not was not hers he probably won't get funding this time, but we can appeal and ask to be reassessed. We should hear the decision in about a month. We started this process three and a half months ago. I can see why some people have received funding retrospectively.

Will post what the outcome is.

You take care too. Mary aka Peter3


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