Fibromyalgia Support Group

I expect werever you live, you've had major difficulty with receiving the right welfare benefits if any.

I don't know anything about the Welfare outside the UK... but I can tell you the current system AND the new recent changes to it are leaving us lot facing even more physical and financial uncertainty.

I for one have never been given incapacity. Had my Dissability revoked and then tuened down three times and now I've been moved on to the new ESA - Employment Support Benefit in the capacity to work group. This could mean being forced into work I can't do under the threat of losing all my benefit.

I just wanted to make anyone else aware if they have been put on ESA ... be ready for battle and check which group you have put into. Don't let anyone bully you into doing something you know is going to make you worse.

In the meantime, I've a Work Capability Interview next weds and believe me I'm ready to give them hell if they even try to threaten me.

I've decided to write to the Govt Department responsible for Benefits and the NHS highlighting our problems and hopefully get a response back telling us (UK sufferers) what the Govt take is on all this. I hope if I get enough interest to start a petition that in the long term will end up at No 10. God know's i'm biting off more than I can chew... but what the hell!

I'm fed up of being treated as a second class citizen that is supposed to live in a civilised democracy. Anyone interested in taking part?

I'm not in the UK so I'm not familiar with all this that's going on. I just wanted to wish you luck in your quest and at your interview!

Thanks. I'll only set out on the big petition quest if I get enough interest. I suddenly realised that 20 years ago.. we couldn't have even beome members of this forum as the Internet didn't exist but not only can we support each other from home we can now use it to empower ourselves to protest without leaving our beds. We might as well take advantage of it. To try and change attitudes in whatever country we live in.

For some reason, most of us here (tho certainly not all of us) are from the US. Here we have the Social Security Administration to deal with. Social Security is a sort of tax we pay in while we work, and then get to draw out after we reach a government set retirement age, OR when we become too ill or injured to work.

The problem is, unless you're retirement age, it's a fight to get benefits. You apply and 99.9% of people who apply for disability are turned down the first time (and it takes about 6 months to get that decision). You then ask for a reconsideration. This just means that someone else in Social Security will look at the same paperwork and either approve or deny your application. It's just about 100% that you're going to be denied a second time. This also takes about 6 months. Then you ask for a court date to appeal your case to an Administrative Law Judge. IF your'e going to get disability benefits, this is the most likely time you will be approved, becuase you're allowed to have a lawyer with you, and see and talk with the judge to make your case. It takes up to a year to get your court date set, then actually get to go to court. If the judge denies you again, you have one more appeal, this is before a panel at the Social Security. If they deny you yet again (and again, it's about a 80% denial rate) you have to start all over.

Now, here's the really bad part!! While you're waiting to be approved, up to 3 or more years, you can't work. If you work, you obviously don't need disability benefits. Working is an automatic denial. So what are you supposed to do to support yourself and your family while you're waiting? Better hope you have a spouse, or family who can support you while you wait. Here's the kicker. Once you're approved for disability benefits, you can work part time and make up to about $1000 US dollars per month because that's not "gainfully employed." But you can't work ANY while waiting. Ain't that a kick in the teeth?

I'm sitting at about 2.5 years into my fight and waiting for my court date to be set.

That, I have to say.. is the most appalling treatment of sick and disabled people I have ever heard MWolf. That is not only making health and quality of life unbearable (as if it wan't already. Surely it has the potential to make people homeless...leave them unable to pay their bills, buy groceries..and leaving theit children in abject poverty... everything. I thought that what was happening in the UK was bad but this is inhumane. Whoever is responsible for the US Welfare Policy in the U.S. should be strung up. I am so very sorry that this is happening and I so wish I could help. It break my heart.

this tatic to me is the starvation tatic, you wont let your kids starve so you will wind up trying to work in between enless you have out side help..believe me I have been there even with my husband working he got laid off and we had potatoes and something else to eat for a few weeks then I coulnt due it had to find work.my case for ssi took ten years now the kicker here is that because it had been so long since I paid in SS taxes,I no longer qaulified for the SSDI(social security disability) and only could get SSI which in the states is considerd poor mans social security it is based off my husbands income if he makes a dollar to much I get nothing for the month..the states due this to discurage people so they wont fight or like me after several years try to work cant and stat all over again causing me to lose because of time the actual money I should have got...all I can say in either country is fight if you can have a doc on your side two would be gret,and a good lawyer...I also think you should turn in back to back applications so you are always in the process of denial and appeal.dont know if its legal but a thought..fight for your self no one else will

Broken I like you get SSI and it took years to get it and the biggest fight. My kids were young when I first applied we loss our home car and was homeless living in shelters and many nights I can remember bearly having food to feel my two babies I went days without eating just so they could eat. We got no welfare at the time and their dad was ordered to pay child support but never paid and everytime they found him he would quit his job. The state is not there for us and everything we get we have to fight so hard for. They do all they can to not give us anything and then act like its coming out of their own pocket. Its a battle but you are right we have to fight no one else will fight for us.

My ssdi was determine based on my back problems not the fms. After I was turned down by SS, I knew that I needed to have legal help. I obtained and attorney who specializes in Social Security cases. Within about 4 months we went to court and the benefits were approved. For me, there were retroactive benefits and that was great, because the attorney's fees were ridiculous, and they were taken right off the top of my benefit. I definitely agree with everyone who has advised that you apply right away. There is no sense in wasting time when you know there is a possibility that you will wait at least a couple of years. The thing that made it a bit easier for me to be approved is that I was collecting long-term disability benefits from my employer. The long term insurance company really pushes for Social Security to pick up their "share" of of the benefit payout, so they advocate for the employee in their application for SSDI. I don,t know why it has to be such a game when all we are asking for is what we have paid into for years. Geri

Ok I wasn't going to post on this subject cuz it just gets my Irish up, as my hubby says, and really ticks me off! I have been trying for the last 4 years to get my SSDI , filed and was denied that took 6 months, filed again and denied again that took a year, got an attorney filed and was denied that took another year, am now waiting on an appeal going on a year for that... that makes the 4 years. During all that time I have applied for SSI, welfare cash benefits, food benefits and state medical benefits. I don't qualify for any of those except the food benefits and occasionaly when they change the programs around some medical. Yeah! wonderful US of A way to take care of you disabled citizens. Ooops I did it again. Sorry.

It IS ridiculous. We've had many discussions here on the boards about the time it takes and the number of times we're denied and how long it takes to get approved. Thank GODS my husband has a fairly good job with medical now. For the first 2 years of my fight for my benefits, he was empolyed only part of the time and we didn't have health insurance. My meds are now costing, even with insurance, about 10-15% of his income (our housing costs about 60%) and he makes too much money to qualify for any type of government assistance, so no food benefits, cash payments, medical or drug benefits, nothing.

The government keeps downsizing, laying off and firing workers to cut the cost to govenment, and that doesn't leave enough workers to process all the applications they have for benefits! So we, the disabled, suffer. Holy hell, we're living in a motel at the moment because we can't afford to live in a regular apartment or rental house. If it wasn't for the fact that we can pay by the week here, we'd be homeless, and considering we lost our last house because I can't work, and he got laid off from his last job, we would have no where to go. We lost our home. We lost our car. We had no income. We had no insurance. We moved 800 miles on the very last of his unemployment payment. If he hadn't gotten this job, I don't know we could've even gotten back to where we started out.

It's completely ridiculous. And at 2.5 years, I'm STILL waiting for my court date to be set.