Rejected by SSDI, What next?

[Hugocfs]

No surprise there. So question at this point:

With the first appeal, is it advisable to get an attorney?

What may influence your response is that I have been feeling better lately and started making an attempt to go back to work part-time as of November 1. Maybe my question is moot as possibly no attorney would want to take on my case in this situation.

Btw, for those thinking about returning to work, it is a lot different getting to work, putting in a couple of hours, and driving back home again compared to walking on the treadmill a couple of times per day and pacing the rest of your activities over the course of the day in the comfort of your own home. It is much harder.

 

[minkeygirl]

I think before you decide if you need an attorney or not, you need to find out what the process is should you get denied by SSDI. If you still have options if you get denied, then maybe doing the appeal yourself is something to consider.

I got denied and saw a judge but that was years ago so I'm sure things have change.

Maybe Dimitri or Olga can help you.

Mink

 

[Seven7]

OH noooooooooooooooooooooooooooooooooooooooooooooooo Sorry to hear this for u. I have no idea how to help except give u support!

 

[Sparrow]

I would consider a consultation with a lawyer who is well-versed in disability law and if possible with ME/CFS cases in particular. Many will give you some initial advice for free, so all it costs you is the energy of having the appointment. It may be different with different lawyers, but in my experience, the people I saw were very helpful even without any fees changing hands, and they sincerely tried to help me do what I could to avoid needing their services further.

 

[dannybex]

What may influence your response is that I have been feeling better lately and started making an attempt to go back to work part-time as of November 1. Maybe my question is moot as possibly no attorney would want to take on my case in this situation.

Just my silly opinion, but think about the word 'disability'. It means, especially to the government, that one has to be dis-abled enough that it makes them un-able to work. In fact, I think the main reason people with ME/CFS get turned down is because most of us don't look sick, and often, we have the paperwork filled out all perfectly, full of detailed notes, etc., so they look at that and think -- "hey, he (or she) can work!"

But, if one has considerable brain fog or concentration problems, and thus, can't follow or remember simple instructions or duties, then how can they hold down a job?

Sorry, but I think you answered it yourself. The question probably is moot. Unless you have severe enough cognition issues...

 

[WillowJ]

No surprise there. So question at this point:

With the first appeal, is it advisable to get an attorney?

What may influence your response is that I have been feeling better lately and started making an attempt to go back to work part-time as of November 1. Maybe my question is moot as possibly no attorney would want to take on my case in this situation.

Btw, for those thinking about returning to work, it is a lot different getting to work, putting in a couple of hours, and driving back home again compared to walking on the treadmill a couple of times per day and pacing the rest of your activities over the course of the day in the comfort of your own home. It is much harder.

"able to work" is supposed to mean 8 hours a day, 5 days a week, all year except vacations. Or at least enough to meet income thresholds.

Different attorneys will give you different answers about taking your case (some won't take you until you've been denied twice and are ready to apply to see an ALJ, for example).

I would say if you think it's likely you cannot support yourself on the amount of work you think you can sustain, look for an attorney until you find one you like.

If you think you might be able to support yourself, you can put off the decision (if it doesn't work out, the failed work attempt would help your appeal or next case, but if it works--great!)

 

[jann1033]

Just my silly opinion, but think about the word 'disability'. It means, especially to the government, that one has to be dis-abled enough that it makes them un-able to work. In fact, I think the main reason people with ME/CFS get turned down is because most of us don't look sick, and often, we have the paperwork filled out all perfectly, full of detailed notes, etc., so they look at that and think -- "hey, he (or she) can work!"

But, if one has considerable brain fog or concentration problems, and thus, can't follow or remember simple instructions or duties, then how can they hold down a job?

Sorry, but I think you answered it yourself. The question probably is moot. Unless you have severe enough cognition issues...

I was denied twice cause they considered my "ebv titer too low" long after any drs. considered that anywhere close to realavent. Last one said I might have been sick once but not anymore...so evidently they now change their mind and I was sick the first time they denied it? Lol get a lawyer pronto. Its set up to deny claims not help you like I naïvely originally assumed. I do know some one with CFS who got it but not sure it was for CFS. I also had a chronic 1/2 dollar+ size ulcer from congenital av malformations they said were no longer a problem Lol.

 

[caledonia]

Part time work is not full time work. Even if you're able to work part time, you're still disabled. The problem is, it becomes harder to prove you can't work full time if you're working part time.

Once you actually get on disability, you can work part time up to a certain dollar amount.

My suggestion would be to consult with three lawyers (or a service such as Allsup, see below) and see what they say. Select the one you like the best following your gut feeling.

Back in 2000 when I applied, a lawyer would not take you on until you had been denied twice and were waiting for the Administrative Law Judge (ALJ). However, there are now several national companies such as Allsup and Binder and Binder who will take your claim from the beginning. I believe due to competition from these firms, lawyers are now also starting to do this.

Also, don't miss the deadline for applying for Reconsideration or you will have to start over, and lose many months. State on your application that you have new evidence to present. The new evidence can be as simple as a report from your doctor that you continue to be disabled. See your doctor every three months so you can document this. My lawyer had a nifty form for this. My judge liked this information the best, and it helped make a favorable decision.

 

[Esther12]

No idea about the US system, but best of luck with everything.

 

[acer2000]

I used an attorney. It was helpful. I also had a two day exercise test using the protocol that was in those papers that showed objectively my body can't make energy and cognitive testing showing my deficits and my lack of stamina. This helped immensely because I could show on paper how disabled I was.

 

[SickOfSickness]

I also had a two day exercise test using the protocol that was in those papers that showed objectively my body can't make energy and cognitive testing showing my deficits and my lack of stamina.

How expensive if you don't mind saying? Was it covered by insurance at all?

 

[WillowJ]

How expensive if you don't mind saying? Was it covered by insurance at all?

It's possible to have insurance cover some of it at least, but you will probably need a doctor to refer you. CPET testing is not unusual and this shouldn't be a problem,but 2-day CPET is unusual, so you might need to have them talk to the center (this should work in your favor especially if your doctor is uninformed about ME/CFS). Have them talk to Staci.

If you are going to Workwell, they will send you information and help you figure it out.
http://www.workwellfoundation.org/testing-for-disability/

 

[acer2000]

In my case it was not covered by insurance. It was expensive. If you meet the threshold, it can be tax deductible. In theory it could be covered by insurance because both tests should be necessary to investigate someone who has fatigue of unknown origin and cognitive status changes. I think out of pocket the 2 day CPET and report was $1-2k and the cognitive testing and report was probably double that.

These tests were very crucial in getting me disability from my private carrier CIGNA, and then subsequently SSDI. The problem we have with CFS is people don't generally accept it as a disabling illness. Quantifying the disability using the above test is very helpful.

The icing on the cake is that since winning disability, I have had to redo these tests to "re-prove" that I am still sick. Its ridiculous, don't get me started.

The fact that most doctors don't order these tests normally as part of their workup is stupid. Remember, CFS is currently an illness of unknown origin with no agreed upon biomarker - it is a diagnosis of exclusion. Exercise testing is necessary to exclude cardiopulmonary causes of fatigue and cognitive testing can be used to "fingerprint" patterns associated with several non CFS illnesses that effect thinking.

 

[Kati]

Check out Linda Nee disability blog

 

[Valentijn]

How expensive if you don't mind saying? Was it covered by insurance at all?

I had a one day CPET for about 100 euros in Belgium. It might be possible to get a good price if you shop around and aren't worried about having brand-new state-of-the-art facilities and software. It's old technology.

 

[taniaaust1]

Hugo, what did you end up doing? I notice this thread is from last year.

 

[SDSue]

I've joined the ranks of SSDI denial. Ughh.

I'd appreciate any advice. Thanks.

Edited for content.

 

[PennyIA]

When I saw this pop up, I saw a lot of the advice I was going to give. In the US? It's VERY common to get denied the first time with VERY LITTLE research. Over 90% of applicants get denied the first time - part of the principle being that if you were attempting to file a fraudulent claim? Only those truly disabled will continue to fight the system (sigh).

I agree, a lawyer is critical. They will fight to get you approved with back disability pay and will only get paid if you are approved and only take a portion of the back pay and/or a small percentage of x number of payments.

Second I think TTT PLUS 2-day cpet is our best bet at this point in time to get help - more so than a diagnosis of ME/CFS. Because both the TTT and the 2-day CPET prove that while we look fine - we truly aren't fine.

AND since your drug was discontinued? Can the doctor supply an alternative, equally effective treatment for your symptoms? If not? I'd push back on the doctor as to HOW you can NOT be disabled if the only treatment isn't available and there isn't a good alternative? To me, lack of treatment is the biggest part of our disability. Until there is an effective treatment and/or cure - we are basically disabled. Some of us just more so than others.

 

[SDSue]

Thanks @PennyIA I really appreciate your feedback.
I will continue to fight for benefits, as I have no other choice. I AM disabled and I AM unable to work. And that, my friend, is very very difficult to actually say

Edited for content.

 

[geraldt52]

SDSue, I'd say you need to have a long talk with your doctor so she understands exactly what it is that keeps you from working, and then supports you through what might be a long process. The question that the lawyer gave you goes directly to the issue, and the doctor will have to support you and your lawyer or you will not get benefits. You have to change her mind. Does she not understand that the reason many or most of us can't work is because of PEM, or PER? Just because you can do something on a given day, doesn't mean you can do it 5 days a week without ending up in a serious relapse. No one can work two days then be off 3 days sick and expect to hold down a job. I'd say find a new doctor, but even that will be construed by Social Security as "doctor shopping", and be used against you...so it's greatly preferable to get your present doctor on board.

You absolutely need a lawyer. Everything you say, every bit of evidence, will likely be interpreted in the worst possible light, absent a lawyer protesting it. Once an Administrative Law Judge, working for Social Security, makes a negative decision on your file you can be in for a very long battle, for which you'll absolutely need a lawyer. I hope your denial was just for the initial application. Have a lawyer review your file as it exists and tell you what you need to do. The good folks at Social Security are not there to help you, they are there to deny you benefits. Once information that can be construed negatively is in your file, it is very difficult to overcome it.