United Brachial Plexus Network, Inc.

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

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)

Some of our prayers have been answered. Thank you to all you VOLUNTEERS for all your hard work getting things the way they need to be for our children. No one knows how much I appreciate all of your hard work and also I want to give a shout out to Cathy Kanter who had the vision for the site. I know how sad those of us in the San Diego supprot group were to see her go and now look !!! Thank you EVERYONE !!!
Gayle mom to Brandon ROBPI !!!

WAHOOOO!!!!!! Thanks so much for sharing the exciting news! Things like this just have a way of making my day. Another victory for the BPI community, and those just don't come about often enough.

You are so right, Kath....this is HUGE and to know how UBPN was successful at making such a big change and on a NATIONAL level is beyond exciting and encouraging too!

I just wanted to personally extend my gratitude to all of the hard work Nancy and Kath put into making this a reality. I know we often take all of your time and effort for granted, but please know it means the world to all of us, our children and future children as well.

By the way...I will join you in that BPI happy dance, Kath. I also LOVE the fact that they stated the truth (which is rare nowadays)...."Injuries can occur at any age, but most often occur during the birth of large infants, when traction is applied to the infant’s head during delivery." Hooray for HONESTY!

THANK AGAIN!

Lisa

This is wonderful news to know that bpi is now beeing reconized as a disabitity. I feel as though I have just been misled about the seveity of bpi from the beginning. MY son is almost 3 and I am just getting this web address and knowledge about what my son is faced with. I feel like I let my son down by just going on what the drs were telling me and not finding more info on my own. I have learned more and felt more comfort about bpithen I have in the last 3yrs. Thank you all for allthat you do here on this website.

This is fantastic news!!! I know that you and Kath spent a lot of time and your own money traveling to the meeting. I really appeciate your efforts. A big thank you and bpi hug (((( }}}}

thank you so much for this and all you do


marlyn

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

HAPPY DANCING HERE! THANK YOU FOR ALL THE TIME INVOLVED & HELPING OUR CHILDREN TO ENJOY A HAPPIER LIFE!!!!!

Does this mean that our kids will be able to obtain SSI? I know I have applied twice for my son and he was denied twice...and this is a baby with 8 avulsions!
Jo