On Disability? Here's what a periodic "review" looks like.

[Dainty]

I was pretty trepidatious about how the review process works for a PWC in the U.S. on disability. After fighting so long and hard to get it, are my payments going to stop? Now that I got it, I figured I'd share the basic info here in case anyone else is concerned about it.

First, I found out if you call them up they'll let you know when you're next scheduled for one (usually it's every 24 months but can be sooner). I'm guessing it helps your case to have a recent doctor's visit on record, so if you're the type who's given up seeing medical practitioners you might consider doing so just prior to the review. They give you 30 days to fill out and return the form.

I've received what they call a "Disability Update Report", which is different from a "full medical review". The update report is some general questions, and my answers are read electronically. They use this info to decide whether a full medical review is warranted.

Is it hard to fill out?

Not at all! The form is only one sheet of paper with 6 questions on it. You answer the questions by X-ing a box. Some may require you state a date or a word or two, but there's no need (or, really, room) for complete sentences or any details. They don't care about that at this point.

The questions were as follows:

1. Since {date of last update] have you worked for someone or been self-employed?
   
   If you answer yes, they ask you to give the dates work began and ended, and monthly earning $ amount. There is room for up to three work experiences and they want you to list the most recent first.​
2. Have you attended any school or work training programs since [date of last update]?
3. Since [date of last update], has you doctor said you can work, cannot work, or have you not discussed it?*
4. Describe your health now as compared to [date of last update]: better, same, or worse?*
5. Have you gone to a doctor or clinic since [date of last update]?
   
   If you answer yes, they want you to provide the dates of your 3 most recent visits, along with a one or two word description of the main reason for each visit.
   - NOTE: They clarify that "doctor" includes any health provider. e.g. chiropractor, licensed counselor, or nurse. They do not request you specify which in this form.​
6. Have you been hospitalized or had surgery since [date of last update]?
   
   If you answer yes, same as above with the dates of up to 3 most recent visits and one or two word description on the main reason.​

Sign with signature, date, and phone number; mail it in provided envelope (stamp needed).

The form came with an additional pamphlet that gives a thorough explanation of each question and details how to fill out the form. It's about as close to brainfog-proof as you could hope to get.

So, I hope this is helpful! Since I'm continuing to improve in a slow but steady manner, I'm sure at some point they will want to do a full medical review. When that happens I'll try to remember to update this thread with the info, again just for anyone who wants to mentally prepare themselves for the process.

Take care, everyone!

*My paraphrase

 

[Koivy]

Wow, that is so helpful. Thank you for sharing!

Since you say that you are improving, did you write that you were doing "better" for question 4? I see a vast difference between getting better enough to be functional vs. feeling just a tiny bit marginally better and it doesn't even impact your function at all (yet). I mean, how much better do you have to feel to write down "better"? I have been criticized by my attorney for being way too specific and "sciencey". For example, instead of saying I'm housebound, I will say "I went out twice in 2010"....which yes, technically I went out twice, but it's so little that it doesn't count and I shouldn't shout that off my rooftops.

I'm also wondering what it would be like for those who have given up conventional medicine and are doing alternative treatments and decline their doctor's suggestions. Does that mean that in order to continue to get government help, we must follow the doctors orders? I just don't think anti-depressants or continuing putting even more hardcore drugs into my body is helping me...in fact, I think it's making me worse!

 

[Dainty]

Wow, that is so helpful. Thank you for sharing!

You're welcome! Glad it was useful.

Since you say that you are improving, did you write that you were doing "better" for question 4? I see a vast difference between getting better enough to be functional vs. feeling just a tiny bit marginally better and it doesn't even impact your function at all (yet).

I agree there is quite a difference between feeling marginally better and experiencing a drastic reduction in symptoms and/or increase in functionality. My improvement over the past two years has been so obvious and unequivocal that "better" was the only possible answer. Examples:

• 2 years ago I still had to be pushed in a wheelchair the few times I barely make it out of the house. Now I've given it away and haven't seen it in over 6 months, and have no further use for it.
  
• From a baseline of 24/7 pain, often a 7 or 8 on scale 1-10, to almost zero pain, save for my monthly cycle and abscessed teeth
• Two years ago, even one year ago, I was still unable to go to the dentist. Now I can.
  
• From a baseline of disabling, excruciating PEM whenever I overexerted to a state of enjoyable, deep, restorative rest every time (I've not experienced true PEM in over a year)
  
• From a baseline of unable to drive (ever) for 7 years straight, to being able to drive myself to/from locations 45 minutes each way. (Only with GPS, though. I get lost a dozen times per trip otherwise, no kidding)
• From a baseline of being entirely unable to manage finances or make even online purchases, to buying 99% of my own food and items these days and staying on top of bills independantly with minimal assistance.
  
• From a baseline of unable to walk 5 minutes, to 20 minutes easily without consequence.
• From a baseline of 5 foods total, to now more variety than I can count.
• From a baseline of wearing a gas mask for life-threatening reactions in my airways, to using it only occasionally as a precaution.
• From a baseline of being unable to go near or touch paper at all, to most paper causing no issue.
  
• From being incapable of going outside in sunshine at all without screaming my head off in agony, to being able to walk about in public in sun with no one the wiser that it's uncomfortable for me.
• I went from requiring a caregiver to make all phone calls to businesses for me, to making about 90% of them myself.
• Dishes, laundry, and cleaning up spills always had to be delegated to caregiver before, now I take care of my own 99% of the time.
  
• I went from having to live inside a custom built porcelain RV trailer as the only safe place I could stay, to being able to stay at 3 different standard built houses as my health continued improving even under the increased chemical load. I am now selling the trailer to buy my own vehicle.

Sorry to overwhelm with the list, it's just incredible how much healing has occurred in a relatively short amount of time, after 8 years of being mostly bedridden and battling life-threatening issues on top of the severe CFS. I still have a lot of brainfog, must manage my energy carefully and avoid stress, but my symptoms are reduced by over 90% and with minimal assistance I can now take care of myself sans caregiver, if I make self-care my full time job. So obviously I'm still incapable of work but there's no way I could honestly claim that my level of disability is "about the same" as it was 2 years ago.

how much better do you have to feel to write down "better"? I have been criticized by my attorney for being way too specific and "sciencey". For example, instead of saying I'm housebound, I will say "I went out twice in 2010"....which yes, technically I went out twice, but it's so little that it doesn't count and I shouldn't shout that off my rooftops.

That's a really good point, and something I tend to be guilty of as well. I was shouting my improvement from the rooftops long before there was any notable increase in function, because I could tangibly feel how significantly the treatment was affecting me. As such, I'm... *hides* not the person to answer this. I even had my caregiver call them up a year ago to report improvement and they were all irritated with her for wasting their time. Oops.

I'm also wondering what it would be like for those who have given up conventional medicine and are doing alternative treatments and decline their doctor's suggestions. Does that mean that in order to continue to get government help, we must follow the doctors orders? I just don't think anti-depressants or continuing putting even more hardcore drugs into my body is helping me...in fact, I think it's making me worse!

For the Disability Update Report they don't ask you anything about whether your practitioner is conventional or alternative, which treatments you're on, or whether or not you've been obeying doc's orders. They're only really interested in finding out 1) Can you work, and 2) Have you seen Someone. I expect the full medical review is more intensive, and the factors you mention may be of greater influence for that.

I don't think switching doctors until you find one that's reasonable should reflect badly on your record. Are you aware that as of January this year, naturopaths in the system are covered by medicaid? That's the direction I'm headed next; all the M.D.s I've encountered in their system are awful, but I'm hopeful ND's will at least do some good. Take care.

 

[Ema]

Are you still waiting for a response then on the submission? Or is that the end of it?

So happy to read of all your improvements!

 

[Ema]

I'm also wondering what it would be like for those who have given up conventional medicine and are doing alternative treatments and decline their doctor's suggestions. Does that mean that in order to continue to get government help, we must follow the doctors orders? I just don't think anti-depressants or continuing putting even more hardcore drugs into my body is helping me...in fact, I think it's making me worse!

I think it is important to show that you are following *your* doctor's orders. So it is crucial to have one that has a similar treatment philosophy to you in order to avoid things like "patient refuses" and "noncompliant" in your medical record.

I would always make some sort of attempt to fill prescriptions by your treating physician. People fail med trials all the time due to side effects and that looks completely different on paper than simply refusing or stopping treatment without documentation.

It doesn't mean you have to take meds you think are dangerous but you do need to make sure your doctor is on your side, always.

 

[caledonia]

The Disinissues Yahoo group says not to say you're "better" until you're ready to go back to work full time. Otherwise, it can trigger a full review.

The Disinissues group is a goldmine of information, and if you want to learn about applying for disability, getting through reviews, or going back to work, I highly recommend it.

 

[Koivy]

Dainty - Your improvement is so amazing! That is amazing and I'm so happy for you! Congratulations! I hope my body will allow me at some point to go through your past posts to see what you have done to achieve such great results. I wish you continued improvement

Ema - good point about filling the meds.

Caledonia - Thanks for sharing that. I will definitely look into it!

I am scheduled for a review at 18 months because the judge wrote that "with appropriate treatment, improvement is expected" even though the medical expert said that improvement was NOT expected, and I'm mostly bedridden! I think having an early CDR is because of my relatively young age. I am worried about the long form...I think that is what most people who have "medical improvement expected" end up getting. I do really hope to be well by then, but given that I've been sick for nearly a decade and it just gets worse and worse....it seems unlikely. To have to deal with this again so soon after dealing with it for so many years is just draining.

 

[WillowJ]

For example, instead of saying I'm housebound, I will say "I went out twice in 2010"....which yes, technically I went out twice, but it's so little that it doesn't count and I shouldn't shout that off my rooftops.

There is a Medicare definition of housebound that doesn't mean cannot go out at all but has something to do with it being a great effort and/or needing a driver, attendant, special transport, or other kind of aid that healthy people don't rely on.

 

[Koivy]

There is a Medicare definition of housebound that doesn't mean cannot go out at all but has something to do with it being a great effort and/or needing a driver, attendant, special transport, or other kind of aid that healthy people don't rely on.

Absolutely! I just meant that despite the technical definitions, answers to forms and questions should be framed in a way that represents disability rather than ability because a lot of bias is at play here for diseases like cfs and especially if you are younger. Saying that I am housebound is technically the same as happily shouting "I was able to go out twice last year!!!" (while conveniently forgetting to state that the outing was short, I had to be accompanied by someone, was in a wheelchair, and I got much worse afterwards)....but it gives off different impressions, according to my attorney. We are sick but we often try to think of our abilities rather than our disabilities (it's too depressing otherwise) and we shouldn't be highlighting what we can do on these forms, because they are looking for ways to say you aren't as disabled as you claim, even though any sane person would conclude than going out twice a year reflects a pretty severe level of illness.

 

[Tristen]

Thanks Dainty. These one page reviews are much nicer to receive than the full medical review, which I have never received. I've not heard of a 2 year review.

I've been through a few of these one page reviews, and that's exactly what they look like. Not sure about now days, but back when I started disability, their reps told me they used 3 time periods (based on level of disability) for doing reviews. It was 1, 3, or 7 years. They used one (1) year reviews for those considered likely to recover and able to return to work. 3 years means 50/50, and 7 years.....unlikely. CFIDS (think that was their preferred name back then) was one of 3 different diagnosis I had listed on the original application, but I doubt it carried much weight back then. I was approved and out in the mail came the reviews at 3 years right to the month.

I assume it's more likely that one would be put into a full medical review if they stated they had made improvements, were working, etc. My first review honestly stated that my condition had worsened. My reviews since then honestly state that my condition remains the same, I have not been working or going to school (very regrettably tried one semester) and have lots of recent and regular doctor visits and mountains of records. My pharmacy records alone would be a paperwork nightmare for them to review.

I'm really grateful for the disability income. I've heard so many horror stories of very ill PwME who cannot get disability. I can't imagine what would have happened to me had I not been approved......it would have been a freakin nightmare for sure.

 

[Dainty]

Are you still waiting for a response then on the submission? Or is that the end of it?

So happy to read of all your improvements!

Thanks! I sure hope that's the end of it, but they aren't clear about whether or not to expect confirmation of that.

Update: I received more mail from Social Security March 4th, stating that they require an appointment with me and to see all my original bank statements from the past two years.

They had already scheduled me for an appointment March 20th, and stated multiple times that if I cannot keep the appointment, require it changed, or need to switch to a phone appointment then just call them.

Only problem? You can't. You get a busy signal. You cannot leave a message or punch in an extension. The past week or two have been a nightmare of trying to get in touch with them. I finally had my "caregiver" visit the office in person on my behalf to inform them I require a phone appointment. She also brought in the bank statements they needed.

Unfortunately, today of all days for the first time At&t lost service to my area, so my phone wouldn't receive the call for my appointment. There are 2 other phone numbers on my record, but they did not bother to call those, they merely asked me to call them back. As if I could.

I managed to call the Federal Social Security line, and after waiting on hold for over 45 minutes a nice lady contacted the office on my behalf and told them to call me at my home phone. She was really keen for a second number, so I gave her my caregiver's as back-up. What did they do? They called my caregiver first, who directed them to call my home number. Only they didn't.

I've now emailed both the Federal Social Security website and my local representative reporting that NO ONE can get through to calling this number, and no other options to contact my local Social Security office are provided. I'm stating that my disability requires the ability to contact by distance, and it's distressing for me to hear my benefits might cease if they don't hear from me when I'm not provided a method to contact them.

Not cool.

It's going to take several days at least to recover from this.

 

[SDSue]

I'm in round 2 of SSDI application. Sigh.

I was declined in November and I appealed right away. Thought I had completed everything, but just received 3 large packets of more paperwork to be done.

1. Pain assessement
2. In depth work history
3. Function report

Anybody have any suggestions, especially on the Function Report? It truly sounds so unbelievable when I write it all down - I live on very few foods, don't cook, rarely drive, etc, etc, etc. Basically, how we all live at level 2 of functioning.

I had no idea that there would be periodic reviews. So either I get well, or I spend the rest of my life proving that I'm ill? I'm so damn tired of proving that I'm ill.

@Dainty I'm eager to hear how you fared in the review process. Thanks!

(Another) Bad day here.

 

[Gingergrrl]

I'm in round 2 of SSDI application. Sigh.

I was declined in November and I appealed right away. Thought I had completed everything, but just received 3 large packets of more paperwork to be done.

1. Pain assessement
2. In depth work history
3. Function report

Anybody have any suggestions, especially on the Function Report? It truly sounds so unbelievable when I write it all down - I live on very few foods, don't cook, rarely drive, etc, etc, etc. Basically, how we all live at level 2 of functioning.

I had no idea that there would be periodic reviews. So either I get well, or I spend the rest of my life proving that I'm ill? I'm so damn tired of proving that I'm ill.

@Dainty I'm eager to hear how you fared in the review process. Thanks!

(Another) Bad day here.

@SDSue Do not give up hope and most people are usually denied disability in the US and having to appeal. They count on a high percentage of people giving up b/c they can't handle the process so please do not give them that satisfaction.

I am still on short term dis through my employer (which was a private plan that I purchased and came out of my paychecks twice a month for 12 yrs) but they *still* gave me a hard time and did not want to pay me and I fought with everything in me and won.

This may get cut off in Aug and then not sure what I do?!!!

And @Dainty your recovery is remarkable and you are another inspiration to me.

 

[Tristen]

SDSue.....From what I've seen, Ginger is correct that they routinely deny people first run. So hang in there. Disability is by far the best thing I've done to manage this disease. It's worth the struggle. As I'm sure is true for you....I actually have no idea what I would have done without it.....but it would not have been good.

I just filled out those forms telling it exactly as it was describing me at my worst (too much fluctuation in symptoms to do it otherwise). If you have any other medical conditions that you have a decent paper trail on, throw it in there too. I was approved because of this I'm sure because back when I applied, CFIDS, as they called it then, wasn't liked much.

Not everyone has to do the periodic reviews. Last I knew, they had a three tier disability severity system. They did reviews based on ones level of disability. Mine is every 3 years. The most severe folks are set to do 7 year reviews, but those I talked with on that level said they never heard from the SSA again, many years later.

I wouldn't worry about the reviews because they are much easier to pass than the initial application. Be so nice when you do get it......it's a life saver with this disease. Hang in there.

 

[SDSue]

@Tristen thanks so much for the encouraging words. I am forging thru the paperwork and hoping for the best. I really have no other choice at this point. I've found the people in my local office to be quite helpful and friendly when I call. Such a pleasant surprise, especially after my dealings with the local cable company lol.

@Gingergrrl43 I'm so sorry to hear yours may expire in August but hoping you can fill the gap with SSDI???

We are a bunch of fighters, aren't we?

We fight for a diagnosis
We fight ignorance
We fight for disability
We fight for proper treatment
We fight to get thru each day
We fight ……….

I want my black belt. Who's with me?

 

[Tristen]

lol, kinda felt like I was repeating some of the same I said earlier in this same thread.....guess that means I'm in the right place....

 

[Gingergrrl]

@Gingergrrl43 I'm so sorry to hear yours may expire in August but hoping you can fill the gap with SSDI???

I'm not really sure how to proceed b/c my short-term disability may extend for another six months (as a long-term disability) with the same company but I will have to fight every step of the way to prove how ill I am from CFS. I am hoping seeing the CFS specialist next week will give me new information to give the disability people that will be satisfactory to them. So, it may or may not cut off in Aug and I am in limbo. But for sure my health insurance cuts off as of Sept 1st (my family is insured through me) so we will be switching to Obamacare. I may be creating a post about that topic very soon .

 

[SDSue]

@Gingergrrl43 PM me and I'll tell you my experience (good) with OC.

 

[Gingergrrl]

@Gingergrrl43 PM me and I'll tell you my experience (good) with OC.

@SDSue, I will do that and would love to hear your experience. The one we need to investigate is called "Covered California" so I don't know if the options are different w/you in Florida? But I will PM you with some questions and thank you for the offer! And I may be starting a thread on this too soon...

 

[Jarod]

THese disability review docs ask all the wrong questions. I would suggest being prepared to communicate what disables you when meeting them.

I read somewhere they are going to start doing skype reviews. That way it will be possible to do these with a computer screen instead of face to face with the docs.