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)
SSA - disability new fact sheet bpi
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- 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
SSA - disability new fact sheet bpi
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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- 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: SSA - disability new fact sheet bpi
KATH & NANCY,
Hurray!! I am doing my Happy Dance too!!, and just know that you BOTH will be justly rewarded for all your efforts and time to get this done for all of us in the UBPN and BPI Family.'BLESS you both.
Hugs all around,
Carolyn J
Hurray!! I am doing my Happy Dance too!!, and just know that you BOTH will be justly rewarded for all your efforts and time to get this done for all of us in the UBPN and BPI Family.'BLESS you both.
Hugs all around,
Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
Re: SSA - disability new fact sheet bpi
That's great. You all should be so proud and know that we are all thankful for the work you do.
Re: SSA - disability new fact sheet bpi
I totally agree with Carolyn!
Joanie
Joanie