Applying for Social Security Disability (SSI/SSDI)

[KitCat]

It is possible for someone to successfully claim just based on how sick they are even if the illness itself is unknown. (my cousin wasnt diagnosed with any illness but still got onto disability as she was bedbound at the time).

Thanks so much for sharing this. I have always wondered if this is possible. I think in the US that you do need some kind of diagnosis, but I would love to hear if I am wrong about this.

I am glad to hear your cousin got on.

I'd love to know more about how things work in austrailia. Do you know anymore about how much the monthly check is or how difficult it is to get on there?

 

[KitCat]

I second this but suggest not to just ask her but also get copies of what the social security itself has received (this can also be done throu legal means). I actually had two male workers in the social security office sabortage my case so I believe i was knocked back twice due to them.

These two had previously told me they didnt believe in ME/cfs and actually said they would make sure I didnt get benefits. Fortunately on remembering these comments after the 2 time I appealed was rejected and I couldnt figure out why as I had great backing info to my case and I was so sick that I couldnt even stay seated and had to lay for appointments

so on my third and final appeal just before it was just for assessment, I then wrote for a copy of everything in my files backing my case only to find that my supportive info wasnt in fact there and had been removed and vanished so had been missing from the assessments. (some of that had been previously posted in and other of it had been directly handed to them over the desk unfortunately going throu the two guys who didnt believe in ME/CFS).

i can only wonder just how many people with ME these two stopped from getting benefits.

So I highly advise everyone to check that the place where your assessment is being done has ALL your info. Dont only trust they have it.

The assessor (my case ended have having to be assessed in another state) told me had that info been there, I would been granted the first time and wouldnt had to go throu 3 appeals.

I totally agree it is super helpful to get a copy of your own file.

This is a great suggestion. I will add a step about this when I get chance.

I know anyone can contact social security and get a copy of their file on CD. One thing I am not sure about and have wondered... I know for sure you can do this during reconsideration and/or when waiting for a hearing. I have never been able to figure out if they will allow this while an initial application is being processed. I would love to know what happens if anyone tries it.

Are you writing from austrailia? I am in the US. Is it also called social security in austrailia?

good for you for persisiting!!! yes, people are told that they can't get on for cfs and that is totally false!!

 

[KitCat]

Yes, disability has sent forms to wrong address twice! That is right after I calied my case worker to tell her the correct address, which I wrote in the initial application! I don't trust them at all!
My friend got disability for Lyme, but it took her almost 3 years.

I am very glad your friend got on for lyme.

I think I need to revise what I wrote above about lyme. i don't think I explained it quite right.

This was helpful for me to read:

______________________________________________________________

Meeting or Equaling a Disability Listing
Lyme disease does not have a specific disability listing in the blue book. This simply means that it's unlikely someone with Lyme disease would get an automatic approval by meeting a listing.

However, there are several listings that might be met by those with advanced Lyme disease, including:

• Section 1.00 (Musculoskeletal System): May be met if you have significant limitations in your ability to walk or use your arms.
• Section 4.00 (Cardiovascular System): May be met if the Lyme disease caused damage to your heart.
• Section 12.00 (Mental Disorders): May be met if you have one of the cognitive problems or anxiety that can be caused by Lyme disease.
• Section 14.09 (Inflammatory Arthritis): May be met if arthritis in the knees or other weight-bearing joint is severe enough.

 

[KitCat]

I have added a new step!

Feedback, suggestions, and corrections are very welcome.

+++++++++++++++++++++++++++++++++++++


Ten Steps To Winning a Social Security Claim for Chronic Fatigue Syndrome

Step One: Make sure you have the right kind of doctor

• Social Security is happiest if you see an MD or DO (not a nurse practitioner or physicians assistant)
• A cfs specialist is great! But not required. Any kind of MD that is supportive can help your case.
• If you also have fibro, it is super helpful if you also have a diagnosis from a rheumatologist
• If you also have serious mental health issues, it is super helpful if you have a supportive psychologist or psychiatrist (a counselor or therapist is not the same)
• If you also have lyme, some people focus their cases more on other conditions that are recognized by Social Security - such as CFS, fibro, or depression. More about lyme.
• Social security loves it when you see your doctor "frequently and ongoingly." A doctor you only see once or twice is helpful but will not count as much.

Step Two: Make sure your doctor supports your application

• Here's a list I put together of Best ways to talk to your doc about your disability ap
• Here's some ideas for What to do if your doc is not totally supportive
• It helps if you can figure out Why your doctor might not be supportive
• If your doctor still does not support your claim, please consider changing doctors. Finding a supportive doctor can make a huge difference.

Step Three: Start having great doctor visits that create great records

• Here's How to have great visits that create great records that win your claim
• This is super important! Please try to do these things if you can.
• If anyone reading here is already on disability, please read this too. Basically, do these things forever.

Step Four: Document Signs & Symptoms

• Social Security has a special ruling about Chronic Fatigue Syndrome. Unfortunately, it is super confusing.
• I have put together this simpler list of Medical Signs & Symptoms from the ruling.
• Social Security would like your signs and symptoms to be documented by a doctor. If at all possible, it is wonderful if you can review this list with your doctor and talk about how to document this in your medical records.
• In the ideal world, these signs will be regularly documented over a period of six months or more.
• Please keep in mind: Never, ever assume that your doctor will know anything about Social Security policies if you do not show them. They don't teach this stuff in med school!

Step Five: Get a great RFC Form

• Physical RFC
• Mental RFC (optional)
• The ideal RFC is signed by your treating physician (regular visits for 3+ months)
• The ideal Physical RFC is signed by an MD
• The ideal Mental RFC is signed by a psychiatrist or licensed psychologist
• Before asking your doctor, it's helpful if you put together info on your limitations
• Try to set up a special appointment just for this form. Request an extended appointment if possible.
• Please don't skip steps one, two and three. It can be really helpful if you can establish a good relationship with the right kind of doctor before asking them to fill out an RFC.
• Here's some ideas for What to do if your doc doesn't like paperwork
• Don't forget to submit your completed form to Social Security. How to Submit.

Step Six: Collect Clinical Evidence and Tests

Coming soon!!! Suggestions and input are welcome and needed!
Please don't get sucked in by the lure of step six. Every step is equally important here. Tests are just one piece of the puzzle.

 

[KitCat]

http://forums.phoenixrising.me/inde...ue-syndrome-from-social-security-ruling.1970/

This is my first attempt to upload a doc here. Can people open/read/view this attachment?

I made a blog post, because I don't think there is a way to attach a doc to a regular post?

 

[Denise]

I have added a new step!

Feedback, suggestions, and corrections are very welcome..

Thanks for putting this together.
Is this material for SSDI or also for SSI? It might be helpful to specify that. (ETA - even though the subject line indicates SSI and SSDI.)

(Would it be possible to indicate which things would be useful for LTD?)

 

[KitCat]

Thanks for putting this together.
Is this material for SSDI or also for SSI? It might be helpful to specify that. (ETA - even though the subject line indicates SSI and SSDI.)

(Would it be possible to indicate which things would be useful for LTD?)

Hi deinise,

Great questions!

Yes, SSI and SSDI are exactly the same! The only difference is financial.

I will add that in thank you. I will also add a note about LTD.

I am sorry that I don't know enough about LTD to give good info here. I am sure that most of the same medical info will be useful in both cases, but LTD regs are a little different.... also to further confuse things different LTD companies have different policies!

I am going to think a little about that question, which things are useful for LTD? Excellent question. I'm not confident I know the answer.

input welcome!

 

[KitCat]

ok, here's what I got so far....


Are these steps the same for both SSI and SSDI?

Yes, the application is exactly the same for both programs, and you apply the exact same way. The only difference is one financial form. If you are applying for SSI you will need to fill out a financial form and have a phone interview about your finances. Here's what you need to know about SSI and finances.

Are these steps the same for LTD?

No. Unfortunately, I do not know a lot about LTD regulations. I have been told that having a supportive doctor and great doctor visits is really important for LTD. Please take a look at steps two and three above, they will help I cannot comment with confidence on the other steps (input is welcome!). Here's some great links I got from someone who won his claim:

• A great story about someone who won his LTD claim by ditching his doctor and getting a better one
• A great blog by an LTD whistleblower! (She used to work for an LTD company)
• A really interesting website with videos and stories about each different LTD company

 

[Clerner]

Lyme disease does not have a specific disability listing in the blue book. This simply means that it's unlikely someone with Lyme disease would get an automatic approval by meeting a listing

I don't think cfs is a disability listing either. Is it?
I saw my psychologist today and brought her the mental rfc and she will gladly fill it out! Also she said she typed up a whole thing on me and sent it to disability.
Now if only the disability doctor tomorrow will agree with my inability to work. Have a feeling he will say I am fine to work, but don't know for sure.

 

[KitCat]

I don't think cfs is a disability listing either. Is it?
I saw my psychologist today and brought her the mental rfc and she will gladly fill it out! Also she said she typed up a whole thing on me and sent it to disability.
Now if only the disability doctor tomorrow will agree with my inability to work. Have a feeling he will say I am fine to work, but don't know for sure.

Great work! I am super happy to hear this. this will be really great for your case. Having a pdoc that supports you is going to make a huge difference and be a giant help.

Do you have the completed rfc form now? If I were you I would get it into social security as soon as possible. Let me know if you'd like more info on how to do this.

If I were you I would also call and double and triple check that social security receives both these documents and they are both in your file:

- statement from psychologist - whatever it was she sent to disability
- rfc form from psychologist
- anything else you think is important

I would not just say "did you get any records from my psychologist". I would check the specific documents with name and date, if they are important. I would try to talk directly to the person handling my claim.

You would be shocked how often records are missing. they will NOT tell you when records are missing, they will just deny you. You may not find out what was missing until years later!

I hope things go well for your appt. It will likely be super quick! your own doctors records are what matter the most.

 

[Clerner]

I would not just say "did you get any records from my psychologist". I would check the specific documents with name and date, if they are important. I would try to talk directly to the person handling my claim.

Good ideas. I know my case worker seems disorganized and slow. Didn't call me back for 4 days after I left message! Said she had been displaced and was without a desk and a computer! She was writing things down by hand and then waiting to find computer. Ugh!

My psychologist is filling out papers and sending it to disability in mail. I had given her a stamped envelope with address ready to go.

I just sent my rheumatologist report via mail. Must go to Kentucky then back to Tampa. I'm in Sarasota, Fl

 

[KitCat]

great work! you are taking a lot of excellent steps here.

yes it would be wonderful if you could check.

they often make decisions very soon after ce exams, so now is a great time to check!!

 

[KitCat]

I just looked it up. Looks to me like florida has a reconsideration step! that is good. if they make a decision while your records aren't all there, then you get another chance to collect and send them in. So that is less pressure

 

[Clerner]

yes it would be wonderful if you could check.

they often make decisions very soon after ce exams, so now is a great time to check!!

Well had my cell exam today. He had me move, point to my nose, point to his finger, walk an imaginary line and lift my knees etc. Of course I can do these things even tho I have throbbing all over pain and some shooting pain. He asked me briefly about ebv, other viruses and bacterial infections.
He told me 3 words to remember for the end and I could not remember! I guessed the wrong color. He started giving me clues and it took several minutes until I guessed them.

I mentioned pain and extreme fatigie. He did agreed that pain and fatigue are subjective. Took a total of 20 min.

Not sure how this will help my case bc I can physically move just fine. But not remember the word he gave will help my case.

Disability will get my rheumatologist report and the mental rfc in 3-4 days so I am hoping a decision will come soon.

 

[KitCat]

well done, clerner. I am glad you got through everything ok. It is good that he asked you a little about ebv and infections, many social security docs won't know enough to even ask that.

I am very much hoping you will hear more soon. you have done a good job collecting and staying on top of your records.

 

[taniaaust1]

Well had my cell exam today. He had me move, point to my nose, point to his finger, walk an imaginary line and lift my knees etc. Of course I can do these things even tho I have throbbing all over pain and some shooting pain. He asked me briefly about ebv, other viruses and bacterial infections.
He told me 3 words to remember for the end and I could not remember! I guessed the wrong color. He started giving me clues and it took several minutes until I guessed them.

I mentioned pain and extreme fatigie. He did agreed that pain and fatigue are subjective. Took a total of 20 min.

Not sure how this will help my case bc I can physically move just fine. But not remember the word he gave will help my case.

Disability will get my rheumatologist report and the mental rfc in 3-4 days so I am hoping a decision will come soon.

Not great neurological testing for ME. A rombergs test is one which may show up abnormal in ME.

Thou not on ME but on general neuro testing, the following does have one neuro testing on it which ME patients commonly fail to do http://www.neuroexam.com/neuroexam/content.php?p=38

"To bring out abnormalities in gait and balance, ask the patient to do more difficult maneuvers. Test tandem gait by asking the patient to walk a straight line while touching the heel of one foot to the toe of the other with each step."

many of us with ME cant do tandem walking in this way. (like the police test to see if someone is drunk by making them walk on straight line).

best luck

 

[KitCat]

I started writing a little FAQ to go with the TEN STEPS TO WINNING A CLAIM FOR CFS

Input/corrections/additional questions welcome

this is what I have so far:

+++++++++++++++++++++++++++++++++++++++++

FAQ


Are these steps the same for both SSI and SSDI?

Yes, the application is exactly the same for both programs, and you apply the exact same way. The only difference is one financial form. If you are applying for SSI you will need to fill out a financial form and have a phone interview about your finances. Here's what you need to know about SSI and finances.


Are these steps the same for Long Term Disability through my employer?

No. Unfortunately, I do not know a lot about LTD regulations. I have been told that having a supportive doctor and great doctor visits is really important for LTD. Please take a look at steps two and three above, they will help I cannot comment with confidence on the other steps (input is welcome!). Here's some great links I got from someone who won his claim:

• A great story about someone who won his LTD claim by ditching his doctor and getting a better one
• A great blog by an LTD whistleblower! (She used to work for an LTD company)
• A really interesting website with videos and stories about each different LTD company

Why are you calling it CFS? Are you in the dark ages?

“Chronic Fatigue Syndrome” is what Social Security calls it. This is just my opinion: I would suggest writing this on your application materials and encouraging your doctor to do the same. This may irritate you, but believe me it will irritate you more if your claim is denied because your Claims Examiner is confused.


Someone at Social Security told me I can’t get on for CFS or it’s nearly impossible to get on or CFS doesn’t exist or I am not eligible to apply

Let it go. People at Social Security say weird shit all the time. As far as I can tell the people who answer the 800 number are customer service reps who spend most of their days giving out wrong information.

They may be super nice people who are really encouraging and supportive, or they may be super mean people who make you feel hopeless. Either way, means nothing.

Just put together the best possible application, and your claim will be approved. Eyes on the prize.


Where can I learn more about the Social Security ruling on CFS?

Here’s a link to the ruling. Be warned, it is going to make your head hurt.

I have also put together this written-in-plain-English list with just the Medical Signs & Symptoms from the ruling.

There is a great article on explaining more details of this ruling at the Massachusetts CFIDS website. Unfortunately, they have left out the section on diagnostic symptoms. I am sure this was just an editing mistake. I have sent them an email so hopefully they can add this back in (or maybe it will already be back in by the time you read this). Other than that, there are lots of good suggestions here.

 

[KitCat]

Not great neurological testing for ME. A rombergs test is one which may show up abnormal in ME.

Thou not on ME but on general neuro testing, the following does have one neuro testing on it which ME patients commonly fail to do http://www.neuroexam.com/neuroexam/content.php?p=38

"To bring out abnormalities in gait and balance, ask the patient to do more difficult maneuvers. Test tandem gait by asking the patient to walk a straight line while touching the heel of one foot to the toe of the other with each step."

many of us with ME cant do tandem walking in this way. (like the police test to see if someone is drunk by making them walk on straight line).

best luck

thanks so much. I am trying to collect and sift through info on testing. I will look up rombergs

unfortunately, the social security docs won't do real testing, but I am trying to learn as much as possible about what else is out there.

 

[Clerner]

Not great neurological testing for ME. A rombergs test is one which may show up abnormal in ME.

Yes, fairly simple tasks that show I can move. I was afraid of this.
I was so exhausted from doing the tasks I could hardly take 3 deep breaths for him to listen to my chest.

 

[Clerner]

I wonder if anyone has gotten disability for fatigue and pain, even though they can move just fine physically. Did someone get disability even though they passed the CE physical/neurological exam?

How much consideration does disability give to cognitive impairment? You can't really prove pain and fatigue ( I have lots of medical evidence) but it's looking like I am "proving" my cognitive issues.