United Brachial Plexus Network, Inc.

I COPIED THIS FROM THE GENERAL BOARD

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
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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)

Well done Kath and Nancy!

I have a question though (you just knew I would, didn't you?? ;0))

Was it always the case that however you got the BPI, whether at birth or later in life (TBPI) the powers that be never did consider that one arm being affected was a true disability?

I'm only asking out of pure curiosity. It just seems incredible to me that they would only consider two arms being affected as a disability, and not one single arm. Maybe I've read the whole thing wrong??

Lizzy F

PS Might seem a bit of a daft question, but what is the ruling on legs then? Same thing..one leg affected and you're not disabled...two and you are?

Wow! This is awesome to hear. Chris was denied SS benefits the first time around even though he can not return to gainful employment as a auto mechanic. I have appealed and will continue to appeal. Thanks for this information!

Nancy, You Go Girl!! Thank you so very much for all your hard work on this. I'd about given it up for John, but will definitely try again.

I hope you know how much you're appreciated!

Ellen

Please make sure you print out this new Policy statement when you reapply.
Submit it with all your medical records and doctors letter.
I even sent them copies of Outreach that covered bpi.
This way there can be no mistake about where the person, who makes the determination of benefits and disability, has to look for codes you qualify under.

At Camp, this past Fall, the SSA representative told us you must present a very clear picture of your disabilities to the person charged with determining your eligibility.
Submit a list of all the functions you lost and can no longer preform this is very important.
Stress the fact that preserving the function of the unaffected arm is an important GOAL.
Your unaffected arm is necessary for ADL and at all costs must be cared for and function preserved for a lifetime of service.

I know that may sound dramatic but it is important that they have every fact.
The more information they have the better your chances are of being awarded SSD.

I had to make a complete list of everything I cannot do...
It was depressing at first because I am birth injured and never spent much time thinking about what I can't do.
I really spent most of my time in denial pretending I could do everything .... LOL....
Loosing the use of my unaffected arm from overuse and secondary conditions scared me into filing for Disability.
I won and the best advice I got was from the SSA representative who told me to list all of the functions I was never able preform so that they could see that this was a lifelong disability.

I think TBPI can list them as functions they can no longer preform and don't know if they will ever regain those functions.
Making a before and after TBPI list might be depressing but it just may be the way to make your case.

Good Luck and don't give up.
Kath (adult/robpi)

LizzyF aka LizzyB

The question is not daft! I wondered the same thing myself and I answered your question on the General Board before I dropped by here ....
My typing time is up or I would retype it here the shoulder is burning and that's the unaffected side....

I guess if you limp your not disabled although that can really throw your body off - my uncle had one leg so much shorter and limped all his life but was never considered disabled....

Kath (robpi/adult)

I am bumping this up for Fredrick...Judy

hi i was just denied for my first time by SSD in less then two months i have a bi lateral bpi injury along wth long thoracic nerve damage and both ulnar nerves are shot too i have got a attorney now who tells me SSD is back logged 9 to 22 months befor i will get my appeal.gezz thats so screwed up...i cant move on with my life till this SSD stuff is over im 52 years old and worked all my life i almost had 30 yrs in at GM and was looking forwardf to retiring young.....i simply woke up like this one morning no doctor ive seen knows why so if anyone has any tips and pointers on SSD i would be greatfull and thank you for your work.....my pain is so great ive lived on morphine for the past yr...i really have no quality of life left.......im not depressed im PISSED OFF as i tell my doctor thanks gary