The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Applying for Social Security Disability (SSI/SSDI)

Discussion in 'Finances, Work, and Disability' started by KitCat, Jun 9, 2016.

  1. KitCat

    KitCat be yourself. everyone else is already taken.

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    excellent point.

    Ideally, the doctor would write that this is dangerous. To the best of my knowledge, the social security judge won't decide on their own that something is medically dangerous.
     
    actup likes this.
  2. VertigoFlyer

    VertigoFlyer

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    I just had my SSDI hearing last week and it went really well. I have a somewhat unusual case in that I have major issues with my gastrointestinal system stemming from a colon resection that was done in 2007. You can find out more about that here: http://forums.phoenixrising.me/index.php?threads/my-gastro-malaise.46962/. And I have CFS/ME.

    The judge asked a LOT of questions about the episodes my gastro issues cause. These are well documented in my medical records that were submitted to SSDI. I have always viewed my CFS/ME issues as separate from my gastrointestinal malaise. No it's not IBS or IBD. It's more like my vaso-vagal nerve goes haywire... The judge had clearly read through a lot of the information that my attorney submitted. This made me feel very validated. He repeatedly pulled up bits of information from the court record. He didn't just show up and wing it. And he was easy to get along with. I was terrified about this day...

    The simple question that SSDI needs to answer is can I work? I cannot meet the minimum absentee history to be employed. This is less than 1/2 to one full shift per month as defined in Federal guidelines - so the judge said. I on average will miss at least 10 days per month. The judge confirmed that I do not meet this requirement with the Vocational Expert and boom - the judge made it clear that he is inclined to decide in my favor based on that.

    The judge needs to do a final records review and that I will hear back from him in 4-8 weeks. Both my attorney and I walked out feeling that the event went our way.

    Having an attorney was a huge asset through this process. Having excellent medical records from multiple sources including the Mayo Clinic also helped me. This was a loooong drawn out process of 2-1/2 years of applying for and appealing for SSDI coverage. It has been agonizing. I cannot over-express how much better I feel now that I appear to be over the worst of it. I'm still sick as hell and very low on funds. One saving grace is I did very well financially before getting sick which means I put a lot into my SS account which means I'm going to get more now once the checks start coming in. I will also be getting three years of back pay which will go a long way towards paying for a mobility van that we desperately need.

    MAJOR MAJOR BIG FAT KUDOS to my wife who worked so hard at gathering medical records, scheduling appointments, dragging me to said appointments, kept me well cared for and kept the wheels greased as we worked through this. Holy hell I could NOT have done this on my own!

    My best advice is get a skilled attorney in SSDI issues, preferably a local one not one of those big national outfits.
     
    ahimsa, Dainty, Comet and 4 others like this.
  3. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
  4. Silencio

    Silencio Senior Member

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    I just got approved for SSDI this week, and thought I'd post some details in case it can help anyone.

    I applied in Feb 2014, 6 months into being ill, as it was required by my private long term disability policy. I actually never thought I would get to the point of needing it, as I thought I'd be better within a year or two. I'm really glad now that I didn't wait!

    I was denied that October, and requested a hearing. The hearing happened in Nov 2016, I wasn't at it, as have moved back to Europe to live with family, so my lawyer went. I got approval this week, feb 1 2017. So entire process took 3 years.

    I had the following in my appeal:
    -- abnormal tilt test
    -- 2 day cpet showing physiological impairment (although I'm glad I had it, it cost me 10% function loss that I've never recovered, so I don't recommend doing this)
    -- 2 rounds of cognitive testing a year apart (this was really worthwhile although expensive)
    -- lots of doctor visits and write ups
    -- normal blood tests and brain scans

    There were a lot of things I was worried about while going through this process so I thought I'd write about them here in case they help anyone else.

    First, I was worried that I wasn't disabled enough to qualify. The first two years of being sick I wasn't completely housebound. I was able to go out a few times a week on good weeks, and cook for myself most of the time. I had good days where I'd think I was improving. My brain fog and ability to focus would wax and wane, sometimes I would feel normal-ish.

    But, doing the CPET made me completely housebound and often bedbound. I can no longer cook for myself and need a lot of help. My brain fog is now unrelenting. It's ridiculous that I made myself so much sicker, in order to prove I was sick. I really thought that I would recover back to baseline from the cpet, but no joy.

    I was worried at the point where I had to see their doctors. they proclaimed me "not disabled" and that is used for the first denial. Ultimately the judge wrote up quite a compassionate judgement saying that assessment was not given a lot of weight bc it didn't take my history into account.

    I was worried that travel would look bad. I had to leave the US and travel between there and Europe a few times, and I also traveled for some sun while sick in first 2 years. My lawyer was really unhappy with this, thinking they would find out and say I couldn't be sick if I travelled. This was never an issue as they do not look at your passport or ask about travel.

    Hope this is helpful to anyone going through the process. :)
     
    Dainty, Zombie_Lurker and Billt like this.
  5. Billt

    Billt Senior Member

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    Thank you for sharing your story
    We are at the waiting for hearing stage for my son. We have not been able to do all those tests that you did, but do have lots of documentation . Have been waiting almost a year for the hearing
    May try to get the cognitive testing done if we are able. I think that would help alot
     
    Silencio likes this.
  6. Silencio

    Silencio Senior Member

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    @Billt it can cost about $4500, that's in New York so maybe cheaper in other parts of the country. A full set takes 8 hours, which, if your son is bad, he would need to be lying down for, and take breaks, or schedule in two sessions. But, it is really good at documenting our cognitive limitations. It's can be kinda upsetting to realize how broken your brain can be. Lots of things you don't realize till they start prodding.

    I think lots of documentation from doctors is the key, sounds like you have that, so fingers crossed for your sons hearing!
     
  7. Billt

    Billt Senior Member

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    Thanks, I am in New Orleans so maybe a bit less but thing are costly everywhere. Also our attorney is not the best ( as we have found out after the fact ) but here's hoping !! Thanks again
     
    Silencio likes this.
  8. VertigoFlyer

    VertigoFlyer

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    It's been 10 weeks since my hearing and no news yet. That's 2 weeks past the 4-8 weeks the judge mentioned. It always takes longer... Patience is so hard with this since so much is riding on an approval.
     
    Billt likes this.
  9. Silencio

    Silencio Senior Member

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    @VertigoFlyer mine took 12 weeks exactly to get the "fully favorable" judgement in the mail. Online, the message on the My Social Security website still says "processing: appeal under review". I think it will take another 6 weeks to get the notice of award letter which says h0w much your benefits are, based on a friends experience. I used the calculator on the website to figure mine out, so hoping it's accurate.
     
    Billt likes this.
  10. VertigoFlyer

    VertigoFlyer

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    Thank You for sharing that, it really does help. I feel so helpless as I do the seemingly never ending wait....
     
  11. Silencio

    Silencio Senior Member

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    So, 6 week estimate was right on target.. My Social Security website now shows my benefit amount, and how much they take out for Medicare. No award letter in mail yet, and it says first payment will be April.
    Any news for your @VertigoFlyer?
     
    VertigoFlyer and Jennifer J like this.
  12. VertigoFlyer

    VertigoFlyer

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    Well in talking to my attorney it appears that the Seattle SS office is understaffed which is why my claim is taking its slow sweet time. I just checked the SS website and it still says awaiting the judge's determination....... My hearing was on November 1st 2016......

    Our financial resources are dwindling. It's getting scary..... I F'n need this - NOW. The good news is once it does eventually happen it will be a huge help. But oh my oh my is this a slow process. I started my claim in July 2015.

    Slowly freaking out over here....
     
    Silencio and *GG* like this.
  13. VertigoFlyer

    VertigoFlyer

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    The rage I feel about this EVIL disease is fueled in part by how it financially decimates patients. I "was" a very successful IT Systems Administrator with not a care in the world. Life was "perfect". We had enough money to retire and be happy. That's close to gone.

    Having gone seven years without a diagnosis but still sick as hell and unable to work, I tried, and failed. Searching for answers, living month by month assuming the answer was one specialist away from a cure, a solution. I cannot overstate how pissed off I am about this. I've been sick for ten years now. I haven't worked since 2011.

    I just want to lay on the floor and scream...
     
    Zombie_Lurker, Silencio and Billt like this.
  14. *GG*

    *GG* Senior Member

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    I feel your pain @VertigoFlyer, so hope you can hang on just a little longer! Seems like you should be able to get a diagnosis if everything else has been excluded?

    I have no spouse/partner, and have to live with my elderly parents, not the life I want, been years now as well!

    GG
     
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  15. VertigoFlyer

    VertigoFlyer

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    I have a diagnosis courtesy of The Mayo Clinic back in 2014. That was a huge help with SSDI of course. But that then begs the question why oh why is this dragging out so long......??!!
     
  16. *GG*

    *GG* Senior Member

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    Oh, I see. Not sure, Gov't at "work". This is not a new issue unfortunately.!

    GG
     
    VertigoFlyer likes this.
  17. VertigoFlyer

    VertigoFlyer

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    Yeah I know, I worked for the gubment both at the Federal and State level. It's all the same.... What drives me to frustration is seeing others, many others getting a decision at 6 weeks or so. And here I sit feeling sorry for my silly self. But not without REAL reasons...
     
  18. Silencio

    Silencio Senior Member

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    Hey @VertigoFlyer.. I know.. it's all super frustrating and I often feel "the rage".. Sometimes I wish I had any other disease.

    You actually got your hearing much sooner than I did, after appealing, so it seems like the timing for stages is just different where you are. It may all come out the same length process in the end. Too long, regardless!

    Will they backpay you to 2011, or to when you applied in 2015? I hope you can hang in there too..

    @gg I also have no spouse and am with my parents in their 70s, but it's allowed me to not eat into my savings which I am very grateful for. I am fighting to get back my private disability benefits too, which I was lucky to get for nearly 3 years, but that's been a battle entire time.
     
    *GG* likes this.
  19. *GG*

    *GG* Senior Member

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    Yes, my parents are in their 70s as well. With such an unknown future, I managed to save some extra money for retirement, tapped into it some, to buy a cheap used car. At least I am not spending it on rent and utilities.

    But not everyone has family to help. I guess if I did not have that, I would have had to tap into that money until it was gone, and hope my Disability would be approved before I end up on the streeets/under a bridge or something!

    GG
     
    Silencio likes this.
  20. Billt

    Billt Senior Member

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    Well, we finally got the letter from SSI that my son'e hearing is scheduled for June. Like most on this thread, we are nervous for it to get here. Our lawyer has been less than helpful but hope they will at least help with the hearing.
    Proving this seems so hard. He can do some things ( which is great ) but then is wiped out after ! I can see were he might look fine at the hearing but be in the bed after and of course they won't see that .

    We have been keeping all records from doctors and doctor did write a good letter stating that he meets everything for CFS/ME. Still hope to do a little more testing before June

    Bill
     
    Silencio likes this.

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