United Brachial Plexus Network, Inc.

I have been so busy with camp preparations that I failed to let you all know about a very important action that UBPN took with the Social Security Administration (SSA). I will address this more in depth in my next President's Corner and in Outreach, but I wanted to let those of you who regularly come to the message boards know about what transpired in late July.

UBPN was invited to attend a Policy Conference with the SSA in New York City, along with the leaders of several other support groups who deal with neurological impairments like epilepsy, traumatic brain injury, and stroke. Kathleen Mallozzi, UBPN's chair of the In Touch Program, and I attended the meeting. It was a 2 day conference that was not open to the public, but was actually a working meeting. There were about 25-30 people in attendance, most of them SSA employees who write policy.

The purpose was to gather information about revising the guidelines by which the SSA determines disability. These guidelines have not been revised for more than 20 years.

Kathleen Mallozzi had asked for input from you all several months ago so that we could have some actual comments from our community to share with them. Thanks to all of you who either commented on this site or sent us in your information.

I was able to make a presentation of what we felt needed to be changed in the guidelines. First of all, I explained that we needed to be listed! We are not listed and the decisions and criteria are based on piecing together bits and pieces of the guidelines that pertain to bpi. Current criteria focuses on impairment in TWO extremities, which makes it most difficult for our families to get the services they need. I explained that the guidelines for bpi ought to look at two things:
severity of the injury and secondary issues emanating from the primary injury.

For adults, I asked them also to look at the long term issues faced by a lifetime of compensation.

They seemed to really listen. We had very positive feedback from the SSA and from others in the audience.

The guidelines will take about another year to revise.

SSA is also coming to Camp to make a presentation. We will have information about all of this in Outreach that will come out in late Fall.

Nancy Birk
UBPN President

Nancy;
As a family who was declined twice by the SSA, I want to thank you for making our voice heard! I look forward to hearing more about the progress of the policies and more in Outreach! Thanks again!

Cheri & Joel (Mom & Dad to Katie, 3, LOBPI)

This is a huge step forward. Just being invited to such a small gathering was an honor in itself. Thanks so VERY, VERY much to you and Kath for all of your hard work and effort. Your voices are making a difference for our community. It means so much to all of us.

Thanks!
Lisa

Wow...way to go Nancy and Kath...hope this all works out the way you want it to, the way it SHOULD do. Good luck...

Liz

Nancy has filled you in but I thought I would share something.
I was truly impressed by the dedication of the SSA Staff.
They are trying to make the process better for those applying and those in charge of making a determination on claims.

I was so please with the way the SSA Staff asked questions of us and were so interested in our injury.

Nancy made a beautiful statement and the feed back was very positive.

Kath

Wow! This is great news and a big step forward for BPI! So many
people struggle with SSA benefits.

Great accomplishment!

Michelle (mom to Jessica 23 months LOBPI)

Well done Kath, Nancy and UBPN! These are concrete things you're doing for people now and people in the future! Congratulations on your efforts and to the SSA people for listening :0)
Jen NZ

Way to go, Nancy and Kath! Great work! Thanks so much for all you do for the many (too many) individuals impacted by BPIs. ~Tina

Thankyou Nancy and Kath for all your hard work! I know that you volunteer many hours and spend your own funds to travel to do this for us and wanted to let you know how much it is appreciated......Judy

Nancy and Kath
this is a HUGE step forward and I applaud you both and of course all of your members who contributed their thoughts and comments to the process.
Here in the Uk we suffer similar problems when applying for a disability benefit. There are no steadfast laid down rules about eligibility - no criteria of condition - the decision is made by people with no medical background at all- and in fact the government states that you don't get the money for having the disability - but for how if affects your ability to care for yourself.
This means that the allowance is granted randomly by staff - and often depends on your ability to complete the forms well.
I am so admiring of you for even getting as far as you have done-I hope one day, that our group will have a similar opportunity.
Karen