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Disability Review

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#1 Sweet

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Posted 19 December 2012 - 06:29 PM

Hi, I know we've discussed this before, but my brain fog is so thick, I can't begin to remember the answers. I'm on S.S. disability. I feel my primary care physician was key in getting this for me. He just retired, and I'm in search of a new doctor. Making that even more difficult is I live in a very small town, where EVERYONE KNOWS EVERYONE. Yuck.

Anyway, when I received my benefits, they said I would be reviewed in 4-6 years. This coming spring is 4 years, since the award letter. Here are my questions:
1) When they said 4-6 years, was it? Sooner? Later? (I know that's like 3 questions) :)
2) How did it start? Did they send YOU paperwork? Send Dr Paperwork? Call you?
3) Was it in-depth? Or "click a box if your better"
4) Did they want medical records for the past years since you were disabled?
5) Have any of you been denied benefits due to the review?

Any other tidbits would be helpful.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#2 Shelley Ensz

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Posted 19 December 2012 - 08:10 PM

Hi Sweet,

As I understand it, reviews vary by state, depending on how overwhelmed the state's system is will depend whether yours arises sooner, or later. It's my understanding that the process is started by them notifying you by letter (not your doctor).

What they are most keenly interested in is whether your health has improved so dramatically that you are currently working a full time job, and just sort of somehow forgot to tell them about it. If you are still sick and not working a full time job, you don't have anything to worry about at all. They will very likely ask for the names and addresses of all the doctors that you have seen recently (like in the last year).

They might even go so far as to ask you to visit one of their hand-picked medical doctors or psychiatrists. I heard from one person who was sent to a psychiatrist for their review, and all the psychiatrist did the entire visit was read their own medical record back to them, saying, oh, I see here you've been diagnosed with (blah blah scleroderma blah blah), is that true?

I was in a support group once where someone got reviewed who had been on disability awhile, and she simply hadn't gone to a doctor AT ALL, for anything, for six years (!!) so she was worried to pieces about how her review would go. But she was really sick, with severe fatigue, no disputing that by anyone's account, and her doctor's had told her there wasn't anything they could do for her, and that was documented back then So much to everyone's amazement, her review went fine.

The thing is, she was still very sick and therefore she had not returned to full time, year-around work. (And good for her for not wasting her time and her doctor's time by visits that weren't going to improve her health anyway.)

When you were first determined to be disabled, they grilled you, and all of your doctor's, like crazy to make sure that you were really and truly and irreversibly sick. The process is long and difficult and nobody with an ounce of sense would go through it if they were, indeed, healthy. You'd have to be crazy, right? So the only reason on earth they determined you to be disabled is because you ARE disabled.

So when they come around for review, they are no longer trying to determine IF you are disabled. That's somewhat of a no-brainer, and they aren't into wasting their time on that question again. That's why their question, the second time around, is only to see if, despite your ailments, you have somehow managed to return to full-time employment.

Now, if you've gotten so much better that you are now employed full time, then you should get real busy with the project of 'fessing it up to them. They are actually more interested in seeing that you continue receiving benefits at this point. It's not adversarial like the first time around. This time, you can consider that they are on YOUR side. Unless of course you are entirely healed and back to full time, year around employment or exceeding your maximum part-time pay that you are allotted, or if you've used up all your Trial Work months and benefits.

During your Trial Work months, you can work full time and earn as much money as you can possibly make during those months, without your benefits being reduced a cent. They do not have to be consecutive months, they can be interspersed over years if you want. Once you have exhausted all those, then if you continue to work full-time, your benefits stop -- except for your eligibility for Medicare coverage, which continues for about five more years.

In other words, we'd probably all be shocked if you have anything at all to actually be worried about. Odds are you are feeling and functioning a lot better now, without the stress of full time work. It's okay, and dare I say, probably even expected, for you to be feeling a bit better now. But I'd be shocked if you managed to get totally cured, somehow, without even letting us know how you did it!

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Sweet

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Posted 20 December 2012 - 06:48 PM

Thank you Shelley as always for your educated responses. This does give me peace of mind. I just don't have the energy to fight them. :)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 miocean

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Posted 20 December 2012 - 10:41 PM

Hi Sweet,
I can actually answer this one as I just went through this!

I received a letter from SSD last year, about 6 years after I began receiving it. It was not a formal review, just an inquiry to see if they needed to review me. They requested all my doctor's appointments for the past two years so I had to go back to 2010! This is what I did:

I called all of my doctors and told them I needed copies of my appointments dated for the time requested. Remember, I won the "Most Ologists" award although I will happily pass it on to anyone :fairy:.

I received so much paper work that it was overwhelming and emotionally upsetting to see how my life revolved around doctors. I even consulted my lawyer to see if he could help but he agreed it was an enormous task. Some of the paper work had more information than requested, like billing or doctor notes so I covered those parts with paper before I copied them. I had started keeping my appointments on my phone and computer calendar so for the doctors that I only saw a couple of times a year all I had to do was enter the name in the search on the calendar and the list came up. I took a screen shot and printed it.

I sent a 9 x 12 envelope about 1/2 inch thick with everything in it and wrote a cover letter saying it was the best I could do, I found it overwhelming and, that oh, I forgot I was on oxygen therapy for part of that time and didn't include those records. I almost felt sorry for the person who was going to have to go through all of it. A couple of months later I received a letter from SSD saying there was no need to review my case at this time.

If you don't have your original letter stating you are disabled you can request a copy from SS. Keep a copy of everything and mail it with a tracking number and signature required.

So don't worry about it, your doctor's billing office can get you the information if you don't have it. Shelley reassured me and said I almost had to prove that I was able to work. And here is my post that even YOU responded to!

Take care,
miocean
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#5 debonair susie

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Posted 21 December 2012 - 09:56 AM

Hi Sweet,

First of all, it just doesn't seem possible you've been on disability for that long! That time has sure flown by! YIKES!!!

As you know, I'm in Montana and was sent a simple form, within that time frame. In my case, I'm on permanent disability,
which my rheumatologist made very clear to all concerned!

As you've been assured, all will be fine and you need not be concerned, my friend.
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#6 Amanda Thorpe

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Posted 21 December 2012 - 04:34 PM

Hello Sweet

As you know I am here in the UK so am no help at all! However, I remember Miocean's post and Shelley's reply to that and it echo's what's been said above, you have no chance of being taken off of disability.

Take care.
Amanda Thorpe
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#7 Teatime

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Posted 22 December 2012 - 07:07 PM

Hi Sweet,
I just heard from them this year, 6 years after I started receiving benefits. It was a very simple form -- maybe 6 questions. It asked for the date and reason for my last 3 or 4 doctor visits and my last 3 or 4 hospitalizations, if any. Then it asked if I am working, whether my health is better, worse, or the same, and if I'd discussed my status with my doctor. That was it!

If you get this type of form, just give them what they ask for and don't send them a bunch of documentation unless they request it. That's not what they want. This is the short form and, from what I've read, it's just a formality. They are merely wanting to know if you're working, if you're being treated and seeing your doctors as you should, and if you've improved a lot. There is a long form that they send to people who, they believe, might have a greater chance of being able to work someday. That requires more questions and documentation but the odds are still good that benefits will continue.

You fill out the short form, send it back, and receive a letter in a few months stating that they don't feel the need to review your case and they will contact you in the future if they need some information. I wish I had the website -- I will look for it if anyone is interested -- but there is a whole description of what the little numbers on the bar code of your letter mean. You can actually see how Social Security has rated your chances, in their estimation, of being able to work in the future. Interesting stuff -- mine was quite low, something like 12 percent. And that's how they base how often and what type of review form you get.

But until you a query from them, it doesn't matter anyway, lol. Dealing with the government is still stressful at any time!

All best,
Julie

#8 miocean

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Posted 22 December 2012 - 08:55 PM

Julie,

Your response is very interesting to me. I received my kidney transplant in 2010 and that may be the reason they wanted my records back to then. The form they sent me only had 3 blank lines under each question, but I had WAY more than 3 doctor visits and hospitalizations over the past 2 years so I had to send all those papers.

I qualified for disability immediately in 2004. My qualifying letter does not state the reason and lately I have been wondering if was scleroderma or end stage renal disease. The fact that they wanted back until the time of my transplant makes me think it was the latter.

Thanks for the insight!

miocean
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#9 Teatime

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Posted 24 December 2012 - 11:05 PM

Miocean,
i wondered the same thing -- which of my health issues was the reason I was granted disability. I have so much systemic involvement! It turns out, that's in the code, too. There is a bunch of numbers and they all mean something. Somewhere in there is the code for the disabling condition. Mine turned out to be inflammatory arthritis.

And that was a quandary for me. I had a bunch of doctor's appointments and hospital visits and I didn't know if I should only list the ones relating to arthritis or just keep it chronological. (At the time, I was being treated for atrial fibrillation and had just undergone a cardiac ablation.) I decided to simply list the last 3 visits/hospitalizations even though they were cardiac and gastro-intestinal. Maybe one was orthopedic, I can't remember. I guess that was OK!

All best,
Julie

#10 Sweet

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Posted 26 December 2012 - 02:21 PM

Wow you guys ROCK!! Thank you so much for all the information. I do hope I get the "short form". I always ask for a copy of my office notes after each appt, so I already have chart notes. I also keep an excel sheet of all my doctor appt for mileage purposes, so that would be easy for me as well to show all my appt.

I guess I just worry, because my primary care physician just retired and my rheumatologist isn't all that helpful.. He's a bit pompous and I could just see him bucking the system causing me problems. If it's a matter of me getting a form, and filling it out myself, and including documentation, that would be so much better. I figured they sent the letter to the doctors not the patient.

Julie, I would love that website if you ever find it.

Again thanks my friends!!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#11 JohnJ

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Posted 04 February 2013 - 11:19 AM

I too appreciate the knowledgable responses, thanks to all. I'm going on my third year, and wasn't even aware of such reviews.

I obviously had no idea what was happening to me back in 2006/07 but was subsequently diagnosed, had a digital rays amputation and sympathectomy procedures. I just know if I would have tried to continue working in my field as an auto technician, I would have surely lost more digits, and exacerbated the symptoms, especially the Raynauds with all the stress that comes with helping to run a repair shop.

I still am experiencing a great amount of stress as my wife has been so sick that she hasn't been able to work since 2009 with her own health issues, namely a hideous problem known as chronic fatigue syndrome (CFS), and fibromyalgia (FM).

It's bad enough trying to make ends meet on 1/3 of what I used to earn, but now I have to pay cash for her meds, and doctors. appointments while she appeals her own SSD case, that was recently denied and on appeal to the AP (Appeals Council).

Life ain't so grand living with health problems and stressful in their own right, but I try to look on the bright side, we have each other and take turns supporting one another through our difficult days.

If you folks thought we had a hard time convincing the Social Security Administration (SSA) we truly are very sick and have a disabling disease, ask anyone who has CFS or FM how hard it is for them. The administrative law judge (ALJ) who denied my wife seemed to think that CFS can be "cured" by taking a few pills during a lunch break and all is miraculously well again!

I could go on but suffice it to say that I agree with what another poster said so well, that is that SSA put you through the ringer the first time, and there is no cure for what we are afflicted with, so "forgetaboutit" and don't worry: your chances of being kicked out of the scleroderma disability "club" is next to nil.

Best wishes to all and may you find some solace in knowing you aren't alone.

#12 Shelley Ensz

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Posted 11 February 2013 - 12:02 PM

Hi John,

I am sorry that both you and your wife have illness and disability. It is great that you are able to offer each other so much more understanding and support.

Did you know we have a section on our main site about Chronic Fatigue Syndrome (CFS) and Fibromyalgia?

Not everyone has Social Security Disability Reviews. It depends on what their diagnosis and prognosis is, as well as their age. If people are near retirement age when they are first disabled, then there may not be enough time for them to be reviewed.

Basically, if it is possible for your condition to improve, you might be reviewed in 3 years. If improvement is not expected, then they might review every 7 years. If you have reached full retirement age in the meantime, it will make it all a moot issue.

My husband received a letter when he turned 66 that he was no longer disabled, that he is now just officially retired. It was actually hilarious timing because he had just had a lung transplant a few months before and at that point he was starting to feel better than ever, so he was mighty thrilled to be able to enjoy improved health with no more oxygen tanks and official retirement at the exact same time.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#13 miocean

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Posted 10 March 2013 - 01:17 PM

I qualified for disability immediately in 2004. My qualifying letter does not state the reason and lately I have been wondering if was scleroderma or end stage renal disease. The fact that they wanted back until the time of my transplant makes me think it was the latter.



Today I received a letter that answered many of the questions I had regarding my SSDI and Medicare. "Medicare coverage based on your kidney condition ends on the last day of March 2013. However, Medicare coverage will continue because you are disabled."

Therefore my original reason for disability must have been scleroderma, but I may have qualified for it immediately due to renal failure. Medicare will cover dialysis but will only cover 3 years post transplant. I am very grateful that Medicare continues because my anti-rejection meds are so very expensive.

miocean
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#14 Amanda Thorpe

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Posted 12 March 2013 - 10:31 AM

This is a very timely topic what with the UK government whittling millions off the welfare budget, taking money from those who can't go out and earn an income to cover the difference.

 

The problem with illnesses like CFS, FM and even erythromelalgia (EM) and back problems is that they are often the illness(s) of choice for what the British press call "scroungers", people with nothing really wrong with them other than an acute lack of a work ethic and the desire to earn a day's wages. They target these illnesses because they can be difficult to quantify, show visible symptoms and have symptoms that can vary greatly in intensity. For example I and my friend both have back problems but that's where the similarity ends as I have sciatica and she has serious issues with discs and so forth having had operations and injections into the spine. She recently retired on ill health grounds and it was her back problem not her scleroderma that was the qualifying illness.

 

Lackadaisical GP's have, in my opinion, played their part in all this by dishing out sick note after sick note without really doing a thorough exam and asking questions or referring to a specialist so said lingering illness can be validated.

 

Here in the UK most of us have seen on TV the long term claimer of disability benefits being filmed running a marathon...for charity, read about the out of work single parent with 11 children in receipt of a multitude of benefits as the current political regime seeks to demonise people on benefit, lumping together the scrounger and the legitimate so that the general public will happily look on whilst real money is deducted from disabled and vulnerable households.

 

John you and your wife have my sympathy and Sweet I hope you're just rubber stamped, unfortunately now's not the time to be dependent on any government for anything!

 

Take care.


Amanda Thorpe
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