United Brachial Plexus Network, Inc.

Pat
You can't have the uglist hands I do...
My mother had the most beautiful hands and nails and mine look like a mangled mess... UGH!

Kath

Pat,

I hear you loud and clear. I have often thought that if ANYBODY would tape down one of their arms for just one day, they might have some idea of what we go through each and every day of our lives.

Good luck to you and everyone else who's trying to get SSD/SSI.

Joanie

You should go ahead and appeal. Just make sure you get that done in the right amount of time. My daughter's is a rtbpi(prominant arm) and we fought. We retained legal advise from an experienced attorney on these denials. It's very important to have any and all medical records and also documentation from your doctor on what the prognosis looks like, or is, any surgeries coming up, therapies and on and on....good luck. The whole problem that lies there is that they can't begin to imagine what you guys go through and that has always been my "beef"-they need to tie their dominant arm behind their back for 24 hrs and then function their normal day and see what it's like. They also need to be reminded of the side effects on the "good" arm and the prognosis of that. The amount of narcotics a person has to take is astrinomical but all of the above mentioned are things that your attorney should be capable of handling for you. The more documentation, the better. We worked and worked and worked and my daughter was blessed with being awarded the disability. Our attorney was great...she also faces another surgery or so and that is what helped us from her surgeon. Keep it up!!!!
Shelley

Shelly, You mentioned your daughter was TBPI? Did you get SSD or SSI for her?? How old is she. Thanks!

Hi, I am in need of a good attorney in Northwestern Wisconsin. I am going to apply to Social Security again and would like to be able to have help doing so. I am ROBPI, and am in my 40's now. Things are much worse as an adult with this injury over the years. Thanks for any help in advance.

Good Luck "PUPPET PERSON",...please keep us informed of your progress through the process. We all learn from this.
Hugs,
Carolyn J

Bumping up for Dawn 18 yr. old woman in Wisconsin.

Welcome, & type in a subject you want to read about in the "Search Forums" Box at the top of the page. There is a link to the New SS Policy changes for Erb's Palsy/Brachial Plexus Injuries. Perhaps someone in the next big town can help you appeal with this information.

Keep searching & don't give up, people have appealled 2-3 times.

Good Luck & keep asking questions on ANY Message Board.

Carolyn J
Adult LOBPI,age 68


Message was edited by: Carolyn J

hi i'm dawn my mother has filed for ssi for me two or three times before.they always said i could not get it.
because i was not disabled enuff.my mother and sister are both on it for a learning problems.
but they said im not disabbled enuff i dont have anybody to help me with this ether.and i have been looking into this for a little while now.but every time i look under ssi disabilites it says ceberal palsy is a disabilitie.
but im still kind of new to this so im going to need a little help if someone can...

Dawn,
What is the name of your biggest City next to your town?
I can help you find someone to assist you at the city and/or county offices.

Carolyn J
Adult LOBPI

PS...another name for Erb's Palsy is "Brachial Blexus Birth Injury".

Dawn I copied and pasted this from an old post.
SSA- Disability new factsheet BPI
Posted: Mar 10, 2006 2:44 PM Reply



new ssa fact sheet on bpi
njbirk Posted: Mar 10, 2006 8:04 AM

I shared with you all some time ago that Kathleen Mallozzi and I attended a Policy Conference with the Social Security Administration as they are revising the Guidelines for disability. This meeting was in July of last year.

Here is the link for the new fact sheet on bpi. Just having the fact sheet is critical (BPI was not included in the listings at ALL before. Instead we had to piece together our injury from the listings of other neurological injuries).

http://policy.ssa.gov/POMS.NSF/lnx/0424580030

The old listing placed disabilty decisions based soley on limitations in TWO extremities and we explained that, instead, for bpi, severity and extent of injury in ONE, should be sufficient for disability. If you read through the fact sheet, you will find these words:

"Marked limitations in any two of the domains, or extreme limitation in one, mean the impairment functionally equals the listings."

Nancy Birk
UBPN President
======================================================


Re: new ssa fact sheet on bpi
Kath Posted: Mar 10, 2006 9:31 AM
Nancy
This change make all our work worthwhile.
I am so excited!
We left this conference feeling positive.
I assumed it would be a very long time before we would see the results of the positive feedback we received there.
This is HUGE we (UBPN) made a change on a National Level.
This policy will support bpi people when dealing with SSA.
I was also pleased to see the opening statement where they acknowledge UBPN.

"Most of the following information on brachial plexus injuries (BPI) was originally prepared in collaboration with the United Brachial Plexus Network (UBPN), and presented in a Factsheet that was distributed in an administrative message. This information pertains primarily to infant birth injuries, however, much of it is also relevant to adults and older children who sustain BPI injuries. For more detailed information about BPI, and the latest developments in this specialized field of medicine, visit the UBPN website at ubpn.org and the National Institute of Neurological Disorders and Stroke?s BPI page at http://www.ninds.nih.gov/disorders/brac ... plexus.htm. "


I am doing the bpi happy dance....

Kath ( adult/robpi)