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to who is trying to get ssi/ssa

janelle-
  • By janelle-
  • Posted May 31, 2009 at 8:51 pm · 41 replies
  • In Help desk
  • Shared with the public
5 Recommendations

to all that have nf1 or nf2 you are able to get ssi and ssa. im on it and only took about 1-2 months to get it.
when filling out the app. put down what your disabilty (NF). they will ask you to bring proof of the NF so get ALL doctors notes and if you have old school papers stating that you where in speical ed (learing disabilty due to nf) bring that in for theem as well. they will also ask you to sign papers for them to talk whith the doctors. and you will also be seeing many of there doctors as well.
if you end up being accepted you will of course will get cash and medical.

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Surgery Hypertension Pain Depression

41 replies

smallfry411

really?? what if you can't get school records. and what if you work???????/

purespirit

wow ive been trying for over 3 years,,, the judge said i was exaggerating my what i go through,, and i have to work to survive, i come home in such pain most days, legs swollen,, but what can you do???

simplydeliciouslove

I've been fighting with them for a little over a year now. They told me that what I feel is just a mild discomfort and that I suffer from hypertension. Their stupid doctor also seemed to think that I knew a lot about NF. After my original filing is whenI was actually able to find out what was wrong with me even though I had had and MRI done the year before. Every single time they sent me the paperwork to fill out and asked if there were any changes in my health I stated what the changes were and promptly returned them. Now they keep telling me that they haven't assigned a judge to my case yet.

LumpsandBumps

It took me 2 years to get my SSID. I used a company to represent me. They did a wonderful job. I supplied tehm with loads of info on NF.
Allsup
http://www.allsup.com/
800.279.4357
Free SSDI Evaluation
The Social Security Administration’s (SSA) definition of disability is different than other programs you may come into contact with through your employer or private insurance. The SSA pays only for total disability. No benefits are payable for partial disability or for short-term disability.

Eligibility for SSID is based on your inability to work. You are generally considered disabled by the SSA if:

1.You cannot do work that you did previously;

2. It is determined that you cannot adjust to other work because of your medical condition(s); and

3. Your disability has lasted or is expected to last for at least one year or result in death.

As we all know #3 applies to anybody with NF. Its not going to just disappear.

I will say this, you see ads on tv for SSID Lawyers like Binder & Binder. Don't waste your time with them.
I had friends who used them the same time I was using Allsup. They were denied 3 times and still haven't gotten approval. Allsup did it for me. Just try thier free SSID Evaluation to see if you're eligable.

tearsrfalling

it took me 6 years to get on disability, and they knew I had NF1, they said I could do some sort of office work, where I could sit down, and stand up when I needed, I asked him where that kind of job was. The docs did send them my info, but it was not good enough, finally one doc sent them a letter stating he was treating me for depression, and was worried I would become suicidal due to this continuos fight going on with disability, and asked them if they could do work if they had my pseudoartrosis along with NF1, and said my disability with NF will get worse NOT BETTER, so 3 months later, I got on disability

proud_momma

I BEEN TRYING FOR 3 YEARS TO GET IT FOR MY LITTLE GIRL BUT THIS IS THE LAST TIME I AM WAITING TO HEAR SOMETHING FROM THEM IF THEY DENY HER WE ARE GETTING A LAWYER THIS IS CRAZY THEY GIVE IT TO PEOLPE WHO DO DRUGS AND PEOLPE WHO DONT NEED IT.

froggy

i finally got it. it took three yrs just waiting on my payment do u no how long that take

froggy

i finally got it. it took three yrs just waiting on my payment do u no how long that take

dababyrn2006

I was turned down the 1st time and I have a hearing date of Aug. 26, 2009. I have been on disability for over 2 years now. I'm a NICU nurse and worked until I couldn't do it anymore. I hope I get it without having to go back again.

GirlA

I agree with proud-mama: Many times they give the disability to people who really don't deserve it.
If they were a little more responsible with who they
give the funds to, there would no doubt be more than
enough to go around.

GirlA

Forgot to mention in my previous discussion that
I have been trying to get disability=medicaid myself
and have been denied. I was given an examination
by a social security doctor, and even though I have numerous serious medical problems because of the NF, they denied me=they refused to acknowledge the
severity of my condition. Presently I am without medical care=it is simply cost prohibitive. I don't understand why I can't get medicaid= I worked for 20 years and should have access to the social security funds that I contributed to.

LumpsandBumps

it took about 4 months for me to get my first check. It was a big one including the 2 year back pay too.
Jerry

jagergrl1028

My Doctor just advise me to try for SSI... I'm headed for injections next mounth and surgery on my next...

janelle-

when i went to see one of the ssi doctors i brought a box filled of paper work with me. all having to do with nf. if i remember right he told me that he had to go on the internet to see what nf was. i would reckamend for you to bring all the paper work you can and bring them to the ssi doctor.

coco76

if your nf keeps you from
working or if your limited
on your work schedule.
i have been trying for 12
years and i keep getting
denied.
cora

GirlA

To Proud Mama: I have been denied Social Security also. So far I have not tried going with a lawyer,
but I don't know if that would improve our chances.
I was told if I had a kid that they would have given me
disability=I don't know why they won't give it to you=
maybe we need to write letters to our congressmen=
the senators=the governor=maybe they need to
make some improvements in who they decide to
give the funds to. They'll give money to "druggies", but they can't seem to give it to people that have legitimate medical problems. Perhaps our congressmen and the social security people would benefit by seeing a printout
of the e-mails from this website.

Sheleena

i have tried to get Tristan signed up for over 4 yrs now. they keep denying him stating that he is able to work. He is now 10. He has learning disabilities and i even have the paperwork from school stating this. However this doesn't matter to them. I have gone to the visits with their doctors and have the paperwork from his doctors but that isn't good enough for them either. i'm fixing to file yet again for it, maybe now that the have stated that he has chronic migraines maybe that will be what it takes it get it sooner. the back pay will be outragous!! but it would go a long way to help with tristan.

catmom08

i started lastyear and now i have a laweyer who says up to 18 months for a hearing. so we wait for that. meanwhile i have been to a few doctors who have written letters and now we wait. i am not sure about allthe rules. i have an unstable job history due to many reasons(but not jail) and that dont help either. i shoulndt have to scrub toliets(highly allergic to cleaners) jsut to live. for those who have got it or at least been to a hearing can u give tips or say what u think u did wrong. u dont have to go into detail just say i dressed wrong or i ticked off the judge by..... or my lawyer was late or i was late or whatever... help those of us who are hanging and we will do the same for others. i will anyway.

MysticMIkel

It is my opinion that very few people get SSDI in a short amount of time. It took me over 2.5 years to get it.

One reason for the length of time, deals with the lack of staff at the social security department.

I recommend that people go to the following websites for assistance.

http://www.thedisabilityexpert.com/
http://www.disabilityfacts.com/default.htm

I also recommend that people buy or check out the following book from their library. Nolo's Guide to Social Security Disability.

It is not cheap, costing about $30.00.

simplydeliciouslove

I wrote a letter to the ODAR office after so many attempts of trying to find out when I would be assigned a jugde. I called one day and lucky for me, this was after my paper work had been tranferred from Downey to the city of Orange, I got a nice lady on the phone who suggested this to me. It helped too. I stated how much pain I'm in what meds I'm on and about two weeks after that I got a reply from them giving me my exhibit list. Now I have my hearing date which is set for Nov. 16th.

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