Applying for Social Security Disability (SSI/SSDI)

[MEPatient345]

Good luck Bill. I just had a QEEG imaging test done that took a few minutes and was non intrusive.. The neuroscientist who conducted it concluded that I had significant abnormalities, 1 to 3 deviations from the norm, consistent with the symptoms documented by cognitive testing. It might be worth doing for your son, I don't know if SSDI accept that test or not.

 

[Billt]

Good luck Bill. I just had a QEEG imaging test done that took a few minutes and was non intrusive.. The neuroscientist who conducted it concluded that I had significant abnormalities, 1 to 3 deviations from the norm, consistent with the symptoms documented by cognitive testing. It might be worth doing for your son, I don't know if SSDI accept that test or not.

Thanks for the info. Maybe we could that that done before the hearing ( if insurance will pay for it ) . I think the more info we have, the better. And maybe that would help his case. His brain fog is one of his worst symptoms.

 

[*GG*]

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

Have you heard of 2 CPET test? This test helps demonstrate how we can do things, but are not reliable, dependable or able to be gainfully employed!

I recently blanked out sensitive info, but have started a thread on this and shared it other places, because I know some people are not all over the Forum, it is rather expansive!

So you can download, print it up, and digest it more easily, or perhaps someone will even compile our data for some kind of larger study!

GG

 

[*GG*]

Thanks for the info. Maybe we could that that done before the hearing ( if insurance will pay for it ) . I think the more info we have, the better. And maybe that would help his case. His brain fog is one of his worst symptoms.

Ah, interesting. Has he had a neuropsych evaluation done. I had that done as well, and my fatigue becomes apparent with this test as well, my memory suffers as well!

GG

 

[Billt]

Have you heard of 2 CPET test? This test helps demonstrate how we can do things, but are not reliable, dependable or able to be gainfully employed!

I recently blanked out sensitive info, but have started a thread on this and shared it other places, because I know some people are not all over the Forum, it is rather expansive!

Thanks GG.

I think we spoke about this before. Yes the cost is up there and his insurance would not cover it. We do have different insurance right now but still not approved. Not sure how he would do on this test as he can do some activity for a short time. I think it would show issues very quickly !! And that may help his case.

We do have neuropsych approved just waiting for date. I think this will be the big one as his fatigue gets really bad as he tries to concentrate. . I will look over everything you sent. Thank yo so much !!! Bill

 

[caledonia]

You don't really need to prove that you have XYZ disease per se. You only need to prove that you can't work at the sedentary level - in other words, you can't sit at a desk and work consistently 8 hours a day, 5 days a week.

Sedentary is the lowest level of work activity. The other two are light and heavy.

This is what I did:

Go through the SSRP letter for CFS and provide evidence for whatever abnormal tests you have that are mentioned in the letter. (EBV titers, etc.).

Provide any other abnormal labs or testing you have.

Get a Functional Capacity Evaluation. This shows how pain and fatigue limit your ability to work.

Get a Neuropsych exam. This shows how cognitive impairment affects your ability to work.*

If you can get a letter from your doctor pulling all this info together for the judge, great. It looks like MassCFIDS has some info on this in their disability handbook:
https://www.masscfids.org/images/pdf/handbook/Disability_Handbook.pdf

Then (and this is the part my judge liked the best) - get a record of continuing disability. This is accomplished by going to your doctor every 3 months and reporting that remain disabled. My lawyer had a nifty form for this. By the time you get to the judge (a couple of years), it will be obvious you're not going to recover any time soon.

Get a lawyer or representative either for the initial application if you can, or as soon as you get denied. Don't use a lawyer from your Long Term Disability company if you also have ERISA LTD insurance from work.

Make photocopies or scans of your initial application. You can use this later after you get approved and you get the long form review, which is the same questions all over again. You will thank yourself later!

-=-=-=-=-=-=

*The only caveat on the neuropsych exam is if you're also applying for ERISA LTD disability through your work. They're notorious for denying your claim or limiting it to 2 years for mental disorders - which they will try to make it look like you have. https://www.masscfids.org/disabilit...nsurance-and-social-security?showall=&start=5

There is lots of other great disability info on the MassCFIDS site.
https://www.masscfids.org/disability-home-page

 

[Billt]

thank you caledonia, That is alot of info. We keep everything together and have all dr visits for the last 3 years.
We are at the hearing stage and do have an attorney ( hoping this will help as well ). Seems this had been the hardest part trying to prove something you just can't see, but I'm sure everyone have been through this.

I hope to have these 2 tests done before the hearing and praying this will help with approval.
Thank You.... Bill

 

[*GG*]

Just want to pass along that MA CFIDS has a PDF available Handbook on Disability. If you find it helpful, please consider making a Donation!

GG

https://www.masscfids.org/disability-handbook

 

[physicsstudent13]

is it really true if you don't have enough work hours you can only get SSI? I'm on SSI now but then suffered 2 strokes

 

[VertigoFlyer]

We got an email last Friday from our attorney and my claim has been APPROVED!!

This process is evil! It takes way too long! It's needlessly burdened by time consuming useless layers of bureaucracy. The only saving grace is the dedicated hard working attorneys who represent us.

I am massively grateful for the end result but OMG that was a horribly long process.

We were lucky, we have enough resources to survive the wait, but my heart goes out to those who are not in a similar position. For those people this process is 100% inhumane.

 

[*GG*]

We got an email last Friday from our attorney and my claim has been APPROVED!!

This process is evil! It takes way too long! It's needlessly burdened by time consuming useless layers of bureaucracy. The only saving grace is the dedicated hard working attorneys who represent us.

I am massively grateful for the end result but OMG that was a horribly long process.

We were lucky, we have enough resources to survive the wait, but my heart goes out to those who are not in a similar position. For those people this process is 100% inhumane.

Yes, I think it would be wonderful if we had the Resources to help people out while they wait. Luckily my parents are still alive, and I am able to stay with them. But not everyone has parents still, you lose lots of friends, and other family might not be an option either!

GG

 

[VertigoFlyer]

We got an email last Friday from our attorney and my claim has been APPROVED!!

This process is evil! It takes way too long! It's needlessly burdened by time consuming useless layers of bureaucracy. The only saving grace is the dedicated hard working attorneys who represent us.

I am massively grateful for the end result but OMG that was a horribly long process.

We were lucky, we have enough resources to survive the wait, but my heart goes out to those who are not in a similar position. For those people this process is 100% inhumane.

The SSDI plot thickens.

We got a back pay check. But it was for only 10% of what we are supposed to get. My attorney has never seen this before. It's freaking out my wife. My attorney says we need to be patient and wait for the "Notice of Award" letter. My attorney says it could be weeks or months before we get that letter that we hope will explain this maddening story. In the meantime my attorney was paid by SSDI. Her full amount too.

I used to climb mountains. In climbing we have a name for a peak that isn't actually the summit - False Summit. I feel like I am on a endless long slog across a never ending ridge line of False Summits. Everytime I think I have arrived at the end of this cruelty I look up to see yet another 1000 foot climb.

OK so I tell myself that I need to remember that - I WON! Yes that feels amazing but can we please wrap this up in a more timely manner????

 

[MEPatient345]

That is strange @VertigoFlyer! My check was short 25%, withheld to pay the attorneys. Still waiting on the balance as they most they can charge is $6000 I think.

Have you logged into the 'My Social Security" website? It will give you your monthly amount breakdown and should be updated with that information now. It won't give you the total backpay award though. My notice of award letter came only 10 days after I received a check. Hopefully yours will be that quick too!

 

[VertigoFlyer]

That is strange @VertigoFlyer! My check was short 25%, withheld to pay the attorneys. Still waiting on the balance as they most they can charge is $6000 I think.

Have you logged into the 'My Social Security" website? It will give you your monthly amount breakdown and should be updated with that information now. It won't give you the total backpay award though. My notice of award letter came only 10 days after I received a check. Hopefully yours will be that quick too!

Yeah I already set up an account on the SS website. I am not seeing the monthly's on there yet. I do see that I am on Medicare now. I was on Medicaid. But my Medicare card with my member number has yet to arrive, so I have to do some more waiting for that too... Tick tock tick tock... I will say that Medicaid looks vastly easier to manage than Medicare. OMG what a mess.

My frustration with this whole process comes from the simple fact that my whole life has been in a holding pattern for almost 3 years now. I can't move forward until this gets resolved and the checks are flowing in. Grumble grumble growl...

 

[Groggy Doggy]

Yeah I already set up an account on the SS website. I am not seeing the monthly's on there yet. I do see that I am on Medicare now. I was on Medicaid. But my Medicare card with my member number has yet to arrive, so I have to do some more waiting for that too... Tick tock tick tock... I will say that Medicaid looks vastly easier to manage than Medicare. OMG what a mess.

My frustration with this whole process comes from the simple fact that my whole life has been in a holding pattern for almost 3 years now. I can't move forward until this gets resolved and the checks are flowing in. Grumble grumble growl...

If it helps, I am in the waiting mode too. Waiting to see any movement in the funding arena. 0$ so far. I need to get medical tests done that only MediCare will pay for.

I sympathize with you that the wait is unbearable and frustrating.

 

[MEPatient345]

Before I got my letter I logged on to that site several times a day hoping to see the information updated! It's sooo frustrating when you are just in that holding pattern. Hang in there @VertigoFlyer and @Groggy Doggy..

 

[*GG*]

My frustration with this whole process comes from the simple fact that my whole life has been in a holding pattern for almost 3 years now. I can't move forward until this gets resolved and the checks are flowing in. Grumble grumble growl...

My disability is not thru SS, but I am coming up on 4 years!

GG

 

[VertigoFlyer]

Oh my what a new day can bring!

I was awakened this morning by my iPhone which got a text message. I have my bank account set up so it will send me text messages when any activity occurs in the account. So with my eyes still not really focusing I see a um "large deposit" has occurred! The rest of my back pay has arrived!

I'm dancing on the ceiling over here!!!

 

[Valentijn]

So with my eyes still not really focusing I see a um "large deposit" has occurred! The rest of my back pay has arrived!

I'm dancing on the ceiling over here!!!

Woohoo! Party at @VertigoFlyer's place!

 

[MEPatient345]

Yayyy!! Amazing!! Congrats vertigo flyer! So glad you can relax now! Woohoo!!