United Brachial Plexus Network, Inc.

Hi all,

I'll start by saying there's a lot of things wrong in this world right now and a lot of inequities and unfairness. Not only with healthcare but also the fact that all the big CEO's are making gobs of money while the working class suffers, celebrities making gobs of money, no good healthcare for the masses, poverty, hunger, crime, war, etc., etc.

We talked to a lawyer about qualifying for disability and what we found is this: you DON'T want to qualify because what it takes to qualify is that you're basically unable to live a somewhat normal life. It's almost like giving up on life. I hope I'm not offending anyone....but.... Eric is just now 23, almost 4 years post injury, successful but incomplete surgery (5 avulsions)...young, his whole life ahead of him. He/we have done what we can to recover from this traumatic injury. And, for us, that doesn't mean being on medication and being homebound. It means going to school for a career where he can help others, getting back to work to feel normal, living on his own for his confidence and self-esteem. Yes, he has serious pain issues, life is really hard sometimes, sometimes he's depressed and wonders why it can't be easier, etc. But, he's trying very hard to make the best of a bad situation. We think that he's too young to be labeled as being disabled (even though he's dealing with a lot of challenges) and think it's best to try to lead a normal, productive life.

We never investigated Vocational Rehab Services and I regret that now. We've been paying to put him through school and I'm not sure he would have qualified for any assistance because he was in school at the time of the accident and therefore wasn't in a situation where they may have thought he needed re-training in a vocation.

Anyways, again I hope I haven't offended anyone....just telling our story.

P.S. I know it REALLY sucks and it's hard but trust me when I say that things do get better. It also sucks that there's so many injured out there (but also helpful to know that YOU'RE NOT ALONE).

Thanks for the above messages. There's two sides to every coin and I appreciate everyone for giving me different ways to look at our situation. I hope I'll be able to help someone like you've (any and all recent posts) helped us!

the only reason we applied is because the car insurance co said we had to. then they said we had to appeal when we were denied. that's why we got connected with a pay only if you win and then the $ comes out of the insurance co's $ and the rest goes back to the insurance co anyway. silly, isn't it? it's one more hoop we had to jump so we certainly aren't waiting with "baited" breath.

shelley

Kath..... You didn't upset me. I'm just concerned with this whole situation. Things like this really bother me. They've bothered me my entire life. I can't stand it when people need help and are rejected due to ridiculous standards in law and regulations. The whole health insurance/disability industry really needs to change. It's really horrible to say, but the government is so concerned with looking good to other countries that they ignore the american citizens that really need their help. For instance, we ( the USA ) just sent milions of dollars worth of medication and supplies plus hundreds of US doctors over to Iran after the earthquake. That was free. Why can't they help out their own americans like that????? I work in the healthcare field and I see patients on a daily basis get denied care due to the insurance not covering their care and needs. Some of these people are really ill.... like getting denied for chemo. What is the problem here? I'm completely venting.. sorry. I just wish there was something I could do to resolve this issue, but I know there is absolutely nothing I can do. My boyfriend and myself just started playing the lottery on a daily basis, something we've never done. I guess hoping doesn't hurt. If he gets denied long-term disability there goes his health insurance. He's been going through his company's insurance and paying out of his pocket since he isn't working anymore. If he stops getting checks, his short-term ends at the end of Jan, we can't afford to continue paying out of pocket and since we're not married he can't go on mine. If he goes on Mass Health there is a possibility of his medical claims getting denied. I really need to look into this. Maybe its time to get a lawyer even though we haven't heard whether he's been denied. Sorry for going off. Wishing you all the best. ~~Dawna~~

Dawna~
I completely agree with you. I feel we need to take care of our own country and our people first. I live in a small town outside of chicago and we have alot of poor and homeless people here. In fact we have an organization called Home of the Sparrow for homeless woman with children. Its very sad to see these woman with nothing; no food, clothes, a car, an education and a crying hungry baby on her hip. I guess thats why I look at myself and I don't see someone who needs help (money from the state) I'd rather feed that lady and her baby. Having this accident and losing my arm gave me a differrent outlook on life and I want to help others that can't help themselves. I hope things with you and your boyfriend get better. Please look at this as a turn in the road for your life and go with it and try not to think about the "what ifs". If you ever need to talk keep me in mind. Good luck with everything.
Kath

Hi All

I am OBPI and 64 and never thought of myself as disabled and still don't, but in truth there are many things I have never been able to do.
I think SSD is important for those who have lost use of their arm and especially if they were already in a job that requires two arms and physicial labor. I always knew I could not do those things and because I have a pronated hand I can type etc. and that is what I did office work but even that took its toll.

I would also like to point out to those who are new to bpi that at all costs you must protect your unaffected arm from many of the secondary conditions that those who are long term bpi have had to deal with. Compensation take a toll on our bodies and on our unaffected arms and hands. Most OBPI adults reported that during our teen years is when we began to have secondary conditions and by our mid to late twenties more signs were there but because we were obpi medical professionals often failed to make the connection. So please take care.

When I finally applied for SSD after working all my life and cutting to part time the last ten years because of secondary conditions,I had to prove I was injured. Because I never had the label of disabled (which the babies do not get even now) I was treated as if it was a "new" injury. I had to be out of work for 5 months without pay.

SSD has standard forms to fill out that do not take into account the degrees of loss that each person has with this injury. some are more severe than others and some folks have a bit more movement than others no two injuries are alike or effect each person the same way. I had to write and essay on the things I can and cannot do. I also included my fear of finally loosing my only functional arm and how it had to be perserved to do daily functions as eating, brushing teeth etc. They need to know what you can no longer do in the way of life functions.

I hope those who need SSD can find a way to get it. If you have any questions please feel free to e-mail me at KathM@UBPN.org

I read this board all the time I don't usually post as I am OBPI but I also know how hard it was for me to give up and apply and then how hard it was to get SSD. I was so sure my "good" arm would never wear out that is what I was always told.
Kath

Hi there!

We applied for SSD 2 mos. after my accident(5/12/00). A few mos. later I was denied. We have a church member who is a lawyer & he is the one who filed it for me the 1st time without charge. Then when we filed an appeal, he charged the usual fee. It took almost another year, but they approved it.

My lawyer said you don't want to re-apply, you want to appeal. It will take less time.

You can work some even if you are on disability. I can make up to $800 a mo. without messing up my disability.

I went to the office of Arkansas Rehabilitation and they helped me find a place that was willing to give me a try with all my physical problems by offering them a large tax deduction if they would hire me. I have been there a little over a year now.

I hope this helps some one out there.

Have a blessed New Year!

SusieKaye

Patty and Mike
SSI is insurance that you and every one else that works and pays into social security has paid for. There is nothing that says that if you are ruled to be disabled that you won't ever be able to return to full or part time work in the future. If you are unable to work at your old job and are having problems with pain,meds ,rehab along with time to retrain then SSI is there for you. Anyone that says that TBPI is not disabling never did much in the physical world and shouldn't judge your life and the effects that your recent TBPI have made to it. Every one needs a hand now and then and SSI is there for exactly that. So don't let any one else throw mud at your life because theirs turned out OK. It's a long journey coming back from a TBPI and no one knows where it will take you or how it will end as we are all different with scars to heal inside and out. If you need it, get some advice from an attorney, it should be free, and see if you are entitled. It may give you the time you need to heal and find a new path.
Keep the faith, Red

social security.
i was injuried in 95,it takes alot of hard work,mentally as well as physically.
i have never given up.it took 7 yrs to get my hands back.now i want to work and each part of the government has its own opinion of how disabled i am.
s.s. says youre fine there are thousands of jobs i can do.then the bvr tested me and they came up with one job.i beleave if the government wanted to help us they would,but i feel as if they need the underdogs to keep begging so they can keep there jobs.
my case is workers comp.i would do anything to have my life back,and tell the government to go #### its self.

I applied for SSD about 2 mos. after my accident in May of 2000. I have a R TBPI & a paralized diaphragm that has me on oxygen 24/7. I was still denied the 1st time. Got a lawyer and appealed it. It took about 18 mos. but I finally got approved. After I was on it for 2 yrs, I was able to get Medicare. That is worth getting disability for.
When you're over 50 it is hard to start over! I wish you the best.

SusieKaye