1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

Preparing to file for SSDI

Discussion in 'Finances, Work, and Disability' started by GoddessinRepose, Jun 13, 2010.

  1. GoddessinRepose

    GoddessinRepose

    Messages:
    39
    Likes:
    0
    I have been preparing to file for SSDI. I am able to do 1 hour of light activity a day without triggering an exacerbation (most days). I am still seeing a handful of clients at my private practice; one hour session per day; 3-5 days a week. Days that I see a client; I must rest the remainder of the day. I am only able to do this because my husband has taken over all of the shopping and housework since I went into this acute phase at the end of March 2010.

    The Disability Atty I spoke with said that as long as I"m earning under $1000 a month (I am) that it won't interfere with my getting SSDI. Last night, I was reading part of the Handbook for getting SSDI that was recommended on this site (download) and in it is stresses that you must not be working at all; not even part time when applying.

    I'm looking for other's feedback and experience with this. Has anyone applied & been awarded SSDI while still working a very minimal number of hours?

    Tx!
     
  2. BEG

    BEG Senior Member

    Messages:
    942
    Likes:
    163
    Southeast US

    Goddess, Between application and receiving benefits, I waited 2 1/2 years. During that time, I worked a couple of part-time jobs when feeling up to it. The Soc. Sec. Admin. called it "failed work attempts." I don't know, however, if it is different for SSDI. Good luck. BEG
     
  3. GoddessinRepose

    GoddessinRepose

    Messages:
    39
    Likes:
    0
    BEG,

    Good to know! Thanks!
     
  4. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    10
    Woodridge, IL
    Yes, I was working very part time and going to school part time (though I was definitely struggling to do these things) when I applied, and I got SSDI on my first try and with no attorney. If I had waited until I got as bad as I am now, I would not have been able to even handle the application (physically or cognitively). I do have several diagnoses, though, and had also just had a very bad car accident, complete with head injuries, so that may have made a difference.
     
  5. caledonia

    caledonia

    Messages:
    3,039
    Likes:
    1,711
    Cincinnati, OH, USA
    The original advice I heard is to not work at all. The reason is then you have to prove that "If you can work a little bit, why can't you work more?", which is harder to prove than "I can't work at all".

    Your lawyer is correct that if you earn under $1000 (the Substantial Gainful Activity amount for 2010).

    I have heard of a few people with CFS/FM getting SSDI while working minimally.

    It may be possible that since the wait times have gotten so long for SSDI, and that people need to live on something while they wait for disability, that they are such hard noses about working part time any more. I'm not sure about this, just guessing.

    You should also ask your question at the Disinissues Yahoo Group, which is excellent for questions like this. The moderator is a former SSDI worker, ironically disabled with CFS/FM. She knows the system like the back of her hand. There are also several lawyers on the group.

    ps. Your level of work activity is probably "sedentary", not "light". There are four categories of work - sedentary, light, medium, and heavy. You'll have to prove why you can't sit and work for 8 hours a day 5 days a week.

    Good tests for documentation for CFS/FM:
    functional capacity evaluation - shows how fatigue and pain limit your ability to work
    neuropsych exam - shows cognitive problems, anxiety, depression, etc.
    any abnormal labs, such as thyroid, high EBV titers, sleep studies, etc.

    The more diagnoses the better. Often it's the combination of several diagnoses which you get you approved. Include both physical and mental diagnoses even if they are all caused by CFS/FM.
     
  6. GoddessinRepose

    GoddessinRepose

    Messages:
    39
    Likes:
    0
    Tx Tammie. Wow, you have been through A LOT! It's good to hear your got your SSDI on the first try.
     
  7. GoddessinRepose

    GoddessinRepose

    Messages:
    39
    Likes:
    0
    Great feedback--thank you! I will check out the Yahoo group; sounds like a great resource. I do have more than one diagnosis: CFS & Dysthymia & Headaches. They are all related to the CFS.

    I just found out that they are using the diagonsis Dysthymia instead of Clinical Depression; I don't know if that will make any difference one way or another. I've had CFIDS for 18 years and had onset of Major Depression while in my initial acute phase.

    I have elevated EBV titers (>5 --is that considered high?). I need to see about getting neuropsych exam & functional capacity eval. One blessing is the psychologist I am seeing to cope with the loss of functioning from this new acute phase (end of March) has CFIDS so is very aware and understands and I think will be a strong help in my seeking SSDI.
     
  8. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    10
    Woodridge, IL
    What is the most important, aside from the medical records, is that you make it very clear exactly how this illness affects every single aspect of your life and how that has changed from what you used to be able to do.....keeping a journal (even if it's just a daily rating of 1 - 10 re energy, pain, functioning, etc) can help a lot, and having any family or friends testify in writing is really good (& if they do this, there may be a ph call from the SS people to talk to them further) ...also explain how incapacitated you are after working a small amount

    the forms they have you fill out are pretty extensive as to different ways that you are impacted by being sick (ADLs, various work types of tasks, socially, etc) & whether you need help (like you said your husband does a lot), and they also look at what you have tried to do to make things better & why those things have failed......I actually typed up something explaining what a typical "good" day is like and what a typical "bad" day is like, too....and showed how unpredictable this illness is

    also they look at your ability to do ANY job, not just the one you have been doing, so you have to explain why you cannot stand a long time, sit at the computer for a long time, etc (provided of course that these are things you are not able to do)....I think the more specific details you give about exactly why something interferes with your ability to work, the better....oh and definitely include any cognitive issues if you have them, too
     
  9. GoddessinRepose

    GoddessinRepose

    Messages:
    39
    Likes:
    0
    Tx Tammie! I've been keeping a daily log of activities and symptoms (saw it on the resource info on this site) and will get letters from my husband and friends too. I need to get started on the online form; this process is rather overwhelming & I feel like I have to fight to get the proper medical care through Kaiser. I have just requested in writing a member advocate to help me get the care I need and with the SSDI process.

    I spoke to a Dis. Atty today and found out that the SSDI record can be updated so no more waiting; I need to get the forms started :)

    Love your quote: Chronically Blessed
     
  10. hensue

    hensue Senior Member

    Messages:
    269
    Likes:
    1
    I was informed by a company who helped get my ssdi. your chances are much better if you are not working at all. I went through Allsup and they took care of everything. My only diagnosis was fibromyalgia. Until I had the xmrv test that was also on my record. I was denied twice but they are betting on you not fighting.
    When you have a Company to do it because I physically or mentally could not. It was so worth it.
     
  11. GoddessinRepose

    GoddessinRepose

    Messages:
    39
    Likes:
    0
    If you call Kaiser Member Services they will give you the address to write to request a Member Advocate in your area. I will check why the private message didn't work; I'm kind of new to this site & still learning how everything works.

    I know the process feels overwhelming; try to take one small step at a time. I called and spoke to a disability atty (for free) and she has been very helpful in answering questions I had. I also did some reading; the resource section on this site for SSDI is excellent. I think that you need to have worked to qualify for SSDI but check it out to make sure. If so, I think you would still qualify for SSI or some other benefits.

    Today is the day I am going to start my SSDI online application. I am going to set my timer and work on it for one hour blocks at a time.

    Good luck!
     
  12. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    10
    Woodridge, IL
    You do have to have worked to get SSDI (bc you pay into it while you are working....it's actually considered a type of insurance)....SSI is avaiable for people with disabilities, though, if they cannot work
     

See more popular forum discussions.

Share This Page