United Brachial Plexus Network, Inc.

The Social Security Administration is in the process of updating their definitions regarding neurological disorders. They are also trying to streamline the process for obtaining SSI/SSD benefits.

We (UBPN) are in the process of examining the requirement for receiving benefits and how we can advocate for the bpi community.

Over the last few years we have noted many families have had problems obtaining SSI and many OBPI/TBPI adults have had major difficulty obtaining disability benefits. This is due to a lack of understand of this injury. Sharing you experiences will help UBPN to be better advocates for the bpi community.
We would like the positive/negative feedback and suggestions from those who have had obtained or been denied benefits.

We will have a speaker from the Social Security Administration at Camp UBPN in September. Your responses will help us to be prepared with questions that can help support the needs of the bpi community in obtaining benefits.

Please respond to this post via e-mail to
KathM@ubpn.org

All information received will be kept confidential.

Please send your e-mail with either of the following subject line:
SSD Response
or
SSI Response

Thank you for your support and help
Kathleen Mallozzi
UBPN Secretary

moving to the top

Moving up for responses.

I suggest that they spend more time reviewing the application. We applied for Sarah and they denied us, which was no shock, but they did it for the wrong reason. See, Sarah climbed out of her crib once and we had an x-ray of her arm, just incase. In their deny letter, they stated that her injury was NOT birth related but due to the fall. I called the worker and she said that we could fight it. I told her that I didn't need the headache and that I was calling to make them aware that they rush and jump to conclusions without reading all of the facts first.

Not sure what kinda respose you want...
yes we got ssi for our daughter now 2 1/2, frist time we were denied ( with a letter stating she could and should get a job now!) HA! 2nd time I talked with our doc.(brith doc.) all her other doc. and thrpists told them what I was doing and they then all pitched in when filling out paper time came. SSI ask for names of doc. thripst,..etc. and this last time they all sent info back, plus we sent info from UBPN site about the injury. That helped ALOT. Anyway we won with some back pay, plus medical. hope this helps, please ask anything ya want.

I applied for my son when he was 12 months old. He had brachial plexus palsy, torticollis, leg length discrepancy, and developemental delays. He couldn't turn his body to his left side to roll over, he couldn't hold a bottle to drink,he couldn't crawl or walk till he was 15 months. They pre-approved my son then after 2 months they denied him. They said he was not considered disabled under their guidelines. I did appeal it but still they denied it. I was gonna appeal again but it seemed like the paper work was harder. I gave up. My son still has therapy for his bpi, speech therapy, therapy for his leg and feet, and a teacher for dev. delays. It seems that my son keeps getting other problems as he grows. I want to apply again but I'm sure they will deny it again.

I hope that when you talk to Social Security that you can tell them about bpi and other problems that all our children have like speech problems, dev. delays, leg problems and feet problems. Some have eye problems. My son even had problems with drooling till about 1 1/2 years of age. Please let us know when you talk to them and what they say. That way we can reapply.

Thank you for representing our children
evee

It would really help if you would e-mail your statement to me at KathM@ubpn.org

Our plan is to let SSA know that many in our population have been denied SSI/SSD and why they were denied.

Kath

evee,
was reading your post this morning (Mon 5/9) and thought I should reply. My daughter is 25 with rtbpi and we have just won her Soc Sec(RSDA). I appealed everything and am very fortunate to work in the state bldg and asked questions and received alot of info from fellow-caseworkers. I ended up going directly to the top, zone manager, and she actually called me back as things were coming through and told me how glad she was to see this coming over her desk and that if that hadn't worked she was prepared to give me the info to take it straight to the county itself. You have to advocate until you can't see straight. I not only did this for Courtney but hopefully for others to know they have to push and push and push.......her worker had no idea that I was familiar with all the apps , etc, an I challenged her as far as doing what she was to be doing, according to state law. When we went for the hearing, even the adl judge on the phone was very angry with the supervisor that was in there with us. It wasn't even Court's caseworker or supervisor and that was probably because they knew I was quitting. The judge kept going over it and over it with the caseworker say "what don't you understand? Why hasn't this been taken care of?" She even used Court's going to college amd to grad school as an excuse that she could do that, why not work? The judge was fit to be tied. I thoroughly intend to write a follow-up letter to someone somewhere(?) in regards to what we had to go through because her caseworker was not at all capable of doing what needed to be done, what she was supposed to be doing, what she was getting paid for etc, etc....I am livve but so glad I pursue this because Court was at her wit's end and couldn't cope there for a while. If I can help with anything, please feel free to email me at sedlinger@charter.net and I'll see what I can do. The top is not the caseworker's supervisor, either. It's the zone manager once you know your county, etc. When they say they're glad someone pursued it, I think it's a good sign. Yes, I'm a social worker but that doesn't mean anything when it comes to knowing your rights.....or your child's.......
shelley

Great information Shelly!
I am a retired social worker too(B.A.) and am LOBPI. I also have a son,now adult, that had multiple disabilities. It did not matter 1 wit, that I "knew" the hoops & right forms to fill out. Constant ADVOCACY & follow up on every little thing,letter & phone calls is what it all takes....AND now since finding a name for MY injuries and UBPN 3 yrs. ago, I now know I must do it for myself until I breathe my last...but everyone here on UBPN gives me energy every day.
Carolyn J

What happens to those who have applied for SSI, were denied and then settled their law suits, does this affect their settlement? Will they even be accepted for SSI if they get a settlement? We applied 2 times for my child to and were denied, we didnt use an advocate but our lawyer said it was one or the other, so we continued with the law suit. the only problem is that my son isnt able to touch any of it until he is older, but you know all the out of pocket expenses between therapy, doctor apts, radiological tests, surgeries, all this money adds up---so help from SSI would be nice and I am sure greatly appreciated for most of the families with a child who is affected.