United Brachial Plexus Network, Inc.

The SSA requires that there be a deficit in BOTH upper extremities. So between the Erb's in one arm, recurrent carpal tunnel and makor arthritis in the other , I met the qualifications

i have applied for ssi last july and was turn down then appealed turn down now im waiting for the hearing where can i find imformation to take with me

Our hearing with our daughter's school district is February 27, 2004 at 2:30pm.
She is a sophomore, and we managed to get from Pre-K through her freshman year in high school with voluntary cooperation of all her teachers--particularly her PE teachers. This school district has known since Parents As First Teachers that our daughter has this disability; no one ever suggested or asked for or prepared a "504 Plan" for her, and we never thought she needed protection from the school district.
How short-sighted we were! She has been "bitten by the hand that fed her," so to speak, and was refused accommodations for her participation in summer school PE--which was golf, tennis, roller blading, and running. She was required to do both pushups and pullups--which you know is impossible! Through all that, she managed to get 96 of 100 points possible in the course, yet got a "B" for her grade. We didn't realize that my request to the summer school principal and her PE teacher for the necessary accommodations had not been honored until we made inquiries about the grade. Without explanation, her grade was raised to an A-. We were not satisfied; 96% is an A.
It was in a conference with the teacher and principal that the accommodations were denied.
We have had to hire a lawyer to represent our case!
The central office administration will not talk to us--answer phone calls or emails.
If we lose our appeal we will take this to civil court.

Cathy, that's very interesting. My son is 8 and in second grade. I've heard many parents talk about the 504's and IEP's. However, like you, no one has ever suggested it to us either, and we've had fine voluntary cooperation with PE and such. I've thought here and there that maybe we should have a plan, but since it seems to be going okay, I've never pursued it. I guess your recommendation would be to get one, eh?
Sounds like your daughter is definitely being discriminated against. I'd be very insulted if it were me! Good luck in your case!
Jaime

Yes, Jaime, you do need to pursue the 504 Plan. I am a former teacher, now in an administrative position in a school district nearby. My daughter's elementary principal and her teachers treated me as a colleague--and truly, I never dreamed that we would face our current predicament. I know that these folks would be horrified if they knew what we are going through [many have since retired--and we are not into publicizing this issue/embarrassing our daughter] but we have kept this private. So far.
If no one is mentioning a 504 Plan to you, you need to be aggressive. I think there are many of us who share these horror stories....you can learn from our mistakes.

Hi all, I read about the issue under what was said about it takes more than the erbs arm for ssi. I am in a discrimation case that said the the same thing. At this point I must be the first person with erbs to define the handicap! I will be proving a point under the ADA! The point here under the ADA it states that a Congenital condition from birth is a disability! Once I prove it in court I will try to get help to put it on this sight for all to copy! I cant beleve, That I am the first person to deal with this,but I guess I am!Tom

it can be done,,,but
your doctor is the one that needs to do it.
you must let your doctor know that you need to have all reports and studies done on you in comparison to the disabilty.then you have a wonderful chance.but you doctors words must be.

i have no douts this is a disability.and hear is my reasons why.

if youre doctor does not put that you are disabiled and tell why in detail.you have no chance.

make your doctor go over all papers that they sand into s.s.i before they send them in..
dont trust word of mouth.see the facts,,its your future.i wish you luck
charlotte

i forgot to let you all know,i did get permintent parshel disablity.
and i am i the process of going for ssi & ssa full.
it helps to have bvr do a evaluation on you and your work history.
i wish you luck