Filing for SSD / SSI Question from UBPN Please help

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Filing for SSD / SSI Question from UBPN Please help

Post by Kath »

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
Kath robpi/adult

Kathleen Mallozzi
Joanie
Posts: 499
Joined: Sat Aug 13, 2005 9:03 am

Re: Filing for SSD / SSI Question from UBPN Please help

Post by Joanie »

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
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: Filing for SSD / SSI Question from UBPN Please help

Post by admin »

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
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: Filing for SSD / SSI Question from UBPN Please help

Post by admin »

Shelly, You mentioned your daughter was TBPI? Did you get SSD or SSI for her?? How old is she. Thanks!
PuppetPeople
Posts: 23
Joined: Sun Dec 12, 2004 8:35 pm

Re: Filing for SSD / SSI Question from UBPN Please help

Post by PuppetPeople »

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.
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Filing for SSD / SSI Question from UBPN Please help

Post by Carolyn J »

Good Luck "PUPPET PERSON",...please keep us informed of your progress through the process. We all learn from this.
Hugs,
Carolyn J
Carolyn J
Adult LOBPI
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Filing for SSD / SSI Question from UBPN Please help

Post by 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
Carolyn J
Adult LOBPI
dawn88
Posts: 2
Joined: Tue Jan 16, 2007 2:18 pm

Re: Filing for SSD / SSI Question from UBPN Please help

Post by dawn88 »

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...
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Filing for SSD / SSI Question from UBPN Please help

Post by Carolyn J »

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".
Carolyn J
Adult LOBPI
Judy-T
Posts: 557
Joined: Fri Nov 02, 2001 11:59 am
Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
Location: Florida

Re: Filing for SSD / SSI Question from UBPN Please help

Post by Judy-T »

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)
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