United Brachial Plexus Network, Inc.

My daughter Destiny just received her denial to our appeal for her to get social security disability. It said that our next step would be a hearing before a judge if we decided to fight the decision. I want to know what everyone has had for experience with this step if you have gone this far.
Destiny was able to skip primary surgury because her biceps started firing about 2 weeks before she was supposed to have surgury. We don't go back to Philly until after we have to have the appeal in.
She is still able to only get her hand to her mouth (barely...she has to bend her head down), and she can't turn her hand over or reach to the side.
She doesn't seem to be too far behind other children even with the injury. She "commando crawls" walks holding on to furniture, and is trying to stand in the middle of the floor. She is only 10 1/2 months old.
I know some of you have said that you received social security disability by letting the judge see what problems your child has, but what do I show with a baby?
Her pediatrician was suprised that she didn't qualify, but SSI had records from her office. I guess they don't see the disability.
Please help if you can.

Cathy, how about asking your bpi specialist to write up a report of her current and future issues and needs. Maybe that will help them figure it out. Good luck.

We have a 5 yr old who also did not need primary and we have been fighting SSI for over 3 yrs now. The first time I went through the process up until you had to go before a judge and I dropped it. A couple years later we found a SSI attorney and he has been doing most of the work. We just had our hearing last month and the expert doctor they ha reveiw her records was a internal medicine/cardiac doctor(he had never seen bpi other than from a text book) and of course without ever seeing her he said she has no lasting disablity based on 1 therapy record when she was about 18mo old that said she lifted a large object above her head. That object was a medium sized ball! During this hearing our attorney did a very good job in proving this guy did not know what he was talking about and further testing would have to be done. So they are setting up a appointment with a neurologist to get his opinion.
It's a long road but one good thing is that if you do get approved you get back pay from the first date you filed. That is amount our attorney gets a percentage from. We don't have to pay him up front and he only gets paid if we are approved. If I'm not mistaken.

If you have any questions feel free to email me at bri_jess@msn.com

Jessica

HI Cathy
We live in Canada so its probably a little different.We couldn't get a disability check until are daughter was 3 because they said you have to help a child until that age anyway with dressing,and every day needs.We also had to get a letter from are speacialist.

A while back someone posted the web address for the SSI site and I cannot locate it.
Could you post it again, please...much thanks.
Barbara

Barb, I think it is www.ssa.gov

Has nobody been approved for SSI already who can respond to this question? Has everyone been denied?

I'm an adult with right OBPI. I got approved for social security 3 weeks after I applied. However, I have severe arthritis, carpal tunnel, pronator syndrome in my good arm. also a lot of arthritis anywhere. I looked up the list of disabilities on the SSA site. It states --disability in BOTH upper extremities. However--- I'm wondering if the testimony of adults who are suffering long term effects would help your case. Erbs does progress--at least with overuse and imballance problems on the unaffected side. It also seems to create a spine imbalance ,scoliosis etc. that leads to early arthritis and pain throughout the life cycle.
Good luck. Hope you win! Pat

Thanks Priscilla!

We applied for SSI for our son (age 12) TBPI. They did see it as a disability and he would have been able to recieve it, but they base it also on the income of the parents. You are allowed to "have" more for SSI than medicaid, and we were told that because we had a very small piece of land that we didnt live on and my teenage daughters car was in hers and my husbands name, etc... we didnt qualify. So basically, we had too many assets. So, you can either give up in our case or you can "see" what you can do with your assets.