United Brachial Plexus Network, Inc.

The Social Security Administration is in the process of updating their definitions regarding neurological disorders. They are also trying to streamline the process for obtaining SSI/SSD benefits.

We (UBPN) are in the process of examining the requirement for receiving benefits and how we can advocate for the bpi community.

Over the last few years we have noted many families have had problems obtaining SSI and many OBPI/TBPI adults have had major difficulty obtaining disability benefits. This is due to a lack of understand of this injury. Sharing you experiences will help UBPN to be better advocates for the bpi community.
We would like the positive/negative feedback and suggestions from those who have had obtained or been denied benefits.

We will have a speaker from the Social Security Administration at Camp UBPN in September. Your responses will help us to be prepared with questions that can help support the needs of the bpi community in obtaining benefits.

Please respond to this post via e-mail to
KathM@ubpn.org

All information received will be kept confidential.

Please send your e-mail with either of the following subject line:
SSD Response
or
SSI Response

Thank you for your support and help
Kathleen Mallozzi
UBPN Secretary

YEAH KATH!! I should add with mine... as my mom read over the papers from the judge.... I applied in June 03 so I should get retro back to then BUT the judge granted me all the back to April 01 (the year of my crash) He didnt understand why I wasnt approved straight away! YEAH!!!! I was excited when my mom pointed that out to me! I called my attorney to doubel check and he said yup thats what it says! I got a good judge i guess!

COurt xx

Wow Courtney what a great outcome.

I am birth injured and had to prove my disability wait 5 months without salary and then they decided it was a "new" injury.... Because I did not file when I should have at least 5 years before I cut the amount of my checks and did not receive benifits for medicare until I was two years out of work.
Kath

Kath,
Do you plan on culling/copying/printing-out all the "Pain" and medical problems threads from our Adult OBPI Message Boards to present to SSA Representative at Camp? I do suggest someone do this to present him/her after their presentation.This will help SSA process of qualifying OBPI abd TBPI as an qualifing Disorder for SSI & Disability Benefits.Data, data, data is the thing that counts & what is need for this process.
My 2 cents....
Carolyn J

Carolyn
We are asking this question because SSA is revising their description and we have been asked for comments. I hope people will feel free to E-mail me if they do not wish to post. Yes we will discuess all of our issues with SSA rep at camp but we need some information on how people dealt with the process of filing. What would make filing for ssd/ssi and easier process is a better understanding of bpi injuries.

Kath

Great Kath! I hope your "INBOX" gets swamped all to heck.
Hugs,Carolyn J

Hi Kath, Sharon here from MI. I've been 10 years fighting for my ssd now ssi. The appeals court has actually sent my case back to MI for yet another review saying that the judge has not taken into account ALL my problems and that the judge only picked out one reply from one doctor. That's the latest reasoning, there have been others

The main reason (from what I can figure out is) that I should still be able to work seeing how I have worked for years in the past. Judje did say that I probably could not function as an office manager but he said he sees not reason I cannot still to clerical work and admitted I would need a stand/sit option at will.

Like most all obpi's I have compensated, worked around and done what I could. Problem being is that no one seems to beleive (or care) that this is a progressive deteriotion of nerves and muscles and after years, it does affect other areas/parts of the body. As long as you have one arm that works, you can work.

I have even had 2 doctors write/state that I can no long work and my lawyer is ready to take it to circuit court.

I guess if we all would have not tried to be "normal" )which we all thought we were not knowing about whatwas wrong) and "fit in" and live whatever kind of normal life,
I guess we could have sat around and felt sorry for ourselves and done nothing.

Now I'm waiting for, yet another, hearing with the administrateve judge, which will be my fourth or fifth time. Pretty sad that I would have to look it up to see how many times I've been there. Hopefully I'll get approved this time. But, if I do, I'm sure it will be for the ssi and not the ssd case. Yea, I've got two cases pending. One that goes back to at least 1998. My first case was in 1996.

So, I guess if you were able to work at any time in your life, you stll can. I could go on with other reasons, but I won't. Good thing I have a lawyer because I don't think I could it anymore (which is just what they want me to do. (give up, die or reach retirement age)

I don't know if this will help you or not, but hopefully it will. The progression issue and having worked before. Oh yea, the pain issue. They really don't beleive that the pain progresses either.

Sharon from MI

Sharon
When I finally applied they treated my injury as if it was a new injury. I had to be 5 months without salary before they would grant SSD. I tried to explain I was always disable but choose to function and not seek and help. I was advised to list all of the functions that I could NOT preform. Boy was I depressed when I realized how many "normal" things I could not do... Never before had I ever stopped to think about it until I could not function at my "normal" level any longer.
Good luck... I hope this time you win SSD.
Thanks for posting
Kath

Sharon,
God bless you for not giving up and going away. Eventually our efforts and all "official" documentations will make a difference for our next generation of adult OBPI's(our teens & kids now).We adults are the true Pathfinders.
Hugs,
Carolyn J

Carolyn

I have to give a lot of my new found determination, not to give up, to my attorney, I think he is more determined than I am at this point.

One thing that might also help others is:
While speaking with my case worker last week, she encouraged me, yes I said encouraged me, to gather my records from the past two years and try for state disability AGAIN. After 3 denials and 3 hearings with the State I did give up on that one. But, she told me that if I refiled and was found disabled through the state, the findings would be passed on to the ssd suit and I just might have a better chance. Hope this helps someone.

Which means, when I sign off, I'm going to call my attorney. He has more medical records on me than I do. When we went to court last time, he had a small dolly with several binders which I thought was for several cases. Turned out they were all about me.

I hope everyone has a very nice Memorial Day weekend and where ever you are, I hope the weather cooperates.

Sharon