Disability/ SSI Issues

I applied about 3wks ago. I had a phone interview that lasted about an hour. Yesterday I got a letter from SSA wanting more detailed info filled out. I have to apply for SSDI when I apply for Long Term Dis through my employer.
Did you call Social Sec and explain that you would like to start a disability claim? You can also go on line at [url]www.ssa.gov[/url] (Disabilty and SSI are the 4th topic in the middle of the page).
Good Luck
MJ

Miss, I know how stressful it is, I’m going through it myself right now also. You need to take it one day and one problem at a time. Rest in between and find something that is enjoyable to do to help release those stressful feelings. As far as any tricks to dealing with the system and making it easier, I really don’t think there are any. Do you have a lawyer working for you? If not you might consider hiring one, they can only get a set percentage of your first check-it would take the stress off of you. I am seriously thinking about doing it that way myself-after I get this first online form filled out-it seems like I have to write a book just to get my interview. On top of everything, I lost my notebook that has All of my dates, tests, drs names, the whole shabang in it:eek: . Now I have to do more research and memory digging-not going well! just to answer a few questions.
I wish there were a magic wand that we could wave and have all the questions filled out exactly how they want them to be-and it would take All the stress out of applying.
Don’t give up, stay positive and be sure to step away from time to time. Take care.

I had to apply for SSDI as part of my work dsisability as well. When I was awarded SSDI they cut my work disability….I did all the work and they got the benefit! Anyway when I filled mine out I was told to use very specific terms as how far I can walk. For example “I can walk 15 feet with a walker but use a wheelchair when I leave home as I have extreme fatigue” rather than I walk with my walker at home and use a wheelchair for other things. Another example was my typing. I told them I currently type about 11 words a minute but prior to this I could type 50. Anytime I could give concrete examples of how I am today versus what I used to be able to do, is how I filled out the form. I did the online form. They didn’t ask me for any additional info. I also dropped off copies of my hospital records at the local SS office. Hope this helps give you some info.

I am going through it now also though I’m losing my confidence because they keep calling me for the same information I’ve sent them three times already. And it’s the same lady who keeps calling me and saying “OH NOW I remember you – oh yes – this time I will call your doctor etc etc etc.” Man if I was that unorganized when I worked for the Feds I’m sure I would have been feeling it come review time…

Anyway, I don’t have any news – I filled the entire thing out online (actually we, my husband had to help) and haven’t heard a word more than “can you send me this and such form again.” No interview yet but I’ll let you know how it goes. I’m not counting on getting disability so it will be a nice surprise if it comes through.

Julie

Hello,

I had lots of issues with the who Social Security and Disability process. If there is anything I can do to help feel free to email me anytime, jerimyschilz at hotmail dot com

Jerimy

Hello everyone,

I am 3+ years post GBS and still fighting for my disability claim. My first application was denied, saying that my condition should not last more than 12 months so I was denied. I thought I would get better. All the Dr.’s said so, just give yourself a little time you will be back to your old self in no time. Well it did not happen and after talking to several people I put in my second application for disability. I went to the local SS office with all my dates and information. I kept all my EOB from my insuance claims to help me with the dates of testing etc. I had a very competent woman who helped me and I could see she thought I should get approved. Well later they (SS) sent me to see one of their Dr.’s . He did a history and had seen some GBS patients before when he was in private practice. He did a short physical exam. But, it was not to be. I was denied a second time. This time I contacted a lawyer and we reapplied, with more dates to remember etc. etc. After the second denial I had to apply for a hearing. That was almost 2 years ago and I have yet to recieve my hearing date. I talked to my lawyer last week and he said I should be scheduled soon, at least by the first of next year. I still need to get my Dr. to fill out some forms for my lawyer or at least write a letter about my condition. She seem hesitant to do so and has been on maternity leave the last few months. I will see her for a regular visit next month. She did send me for a Occupational Therphy Evaluation a few months ago, so hopefully the results of that will help my case.
I keep thinking, maybe I could go back to work part time doing something. Then I have a day like today. I went shopping for birthday gifts for my two granddaughters. I am exhausted, and not done shopping……..
I still feel fragmented.
I hope you have better luck with the process than I have.
Someone told me that most of the people that have had GBS get approved for the disability for psychological reasons than physical. Go figure.
Take Care,
Bonnie:cool:

Hi Miss,

I know the whole process is quite annoying,stressful and very exhausting, just keep trying. It took me 3 times, the third time I went with a lawyer. I was glad to get the referral from Social Services in my area. I didn’t have to pay anything and having a lawyer can really speed up the process.

What state are you from? I know it can be different from state to state the laws and all that. No matter what don’t give up you will get the help you need. Once you get the lawyer, it’s important to have your neurologist and Primary doctors write letters, if you see any other specialists they too can write and even your Physical therapist.

It’s also very important to document everything on paper, dates, what happened, what you have been going through since the onset of the GBS to the very present. The times and dates of doctors you’ve seen.

It’s a real fight just to get the help you, the main problem is that SSI doesn’t have much information on GBS/CIDP, they don’t quite understand it all and the process of our recovery especially since no one has the exact same problems each of us are different and it makes it more complicated for them to make the correct decision just hang in there, stay strong and don’t take no for an answer!
Sure hope this has helped you and anyone else who is going through this process. Good Luck to you all!

Valerie 🙂

Well I had my interview with my ss guy, it took over 3 hours. Way too long to sit on a hard chair! I don’t qualify for ssi-I make $2 over the limit!!! 😡 I will be contacted if the ss people want me to see a dr of their own doing-this crap again!!! I already jumped through these hoops for OPERS for my disability. I now have to wait 1 year for medicare to kick in-I guess its better than 2 years!:rolleyes: still nothing new as far as additional income or insurance coverage.:(

Miss,
First-time denials for SSI benefits are par for the course; they seem to do that to weed out people they believe are fraudulent. You must convince them that you will be disabled for more than 12 mos. Even if you hope not to be, if you’re going to play their game, those are the rules. Having an attorney is one option, but the paperwork doesn’t really require a legal background, just thoroughness and attention to detail.
Two things I found were almost prerequisite was to have a convincing letter from your neurologist stating his/her belief that your recovery and return to work will be longer than 12 mos, and a follow-up inquiry to Social Security from your local congressional representative! That last item will almost always cause the system to sit up and take notice. They don’t want to be seen as dragging their feet by someone who has congressional oversight and who is interested in your case. And believe me, your representative will be very interested: s/he wants your vote!
Best wishes, Byron

SS does not have money for the ones who have paid into it for years. They have money for the illegal aliens coming here tho, and having babies on U.S. soil. This country has leaders who have gone plum loco and we are feeling the effects of it everyday. Let your representives know how you feel and that you are gonna vote some other way. Yeah, that will get their attention the most.
Drummer

Hello,

Well I had my scheduled appointment with my MD today. I did give her some
papers from my lawyer for my SS Disability, again and she promised to fill out what she could. She also needs to document her findings on three different areas. I know this will be on her own time, and I appreciate it so very much. My check up went well. She is sending me to a new neuroligist in my area. The last neuro I saw closed the office in my area. He did not give me any answers or hope. Maybe this one will be different. My MD is also sending me to an Infectious Disease Doctor at Cleveland Clinic main campus. Not sure what answers I will get there or what she may suspect they may find. A long way to go, I will have someone come with me, as it is possibly going to be a long day. I have fever and chills every 4 to 6 weeks, almost like the flu, but with severe teeth chattering chills, fever and extreme weekness. This only lasts for one night or morning. Some days I am fine the next morning. Other times I am down for two or three days. I had a lot of bloodwork done today, chest X-ray, and a TB test. She seems to be checking everything and then some.
Heard from my lawyer I should have my hearing (hopefully) by the end of December or early January. Ohio has seen some pretty nasty storms in January. Pay the weather holds.
Take care.
Bonnie:cool:

My fingers are crossed for you Bonnie. When you go to the Cleveland Clinic, make sure you use your handicapped parking placard and use the valet parking-its well worth it. Lasr week I filed my ss stuff, although I’m not sure why, since I was a state employee I only qualify for medicare in a year. Stay positive, maybe they will approve it before xmas.

Well we’re about to walk my application up the food chain. My super-slack disability rep. STILL hasn’t sent info off to my neurologist and my husband has been calling repeatedly. How long do they get to use my application as a coaster before I can go down there and slap someone around? It’s been since the end of July and I’ve heard nothing except “who are you” and “oh I forgot to send that off.” :confused:

Start Booting some bumms around Julie, you have the right to a timely approval. A cane works nicely, that way you don’t hurt your foot!;)

This may sound like a silly question, but are you all filing disability because you can’t work at all, or because you are working less than before? I am working less right but having a hard time of it. I am my only provider so I don’t have an option to stop working and wait for disability. I was just curious as to how that worked.

Gab, I haven’t been able to go back to work since my first paralysis event in Aug 05. I wish I could, then I test myself and fail to do more than 5 mins of walking or carrying something over 8 lbs. and that thought just goes right out of my head.:( Too much pain, fatigue, unknown paralysis timing ect. I wouldn’t want to have a paralysis event start while I was driving home, at the time I use to work 3rd shift(11pm to 7:30 am) wouldn’t be a good thing.
From what I understand, You would have to be unable to return to work for at least 12 months before ss would even consider your application. There might be other programs that you could qualify for to get you alittle more financial assistance, so you could cut you hours back enough to help relieve your residuals. I don’t know for sure but you might qualify for supplemental security income-if you make less than their limit.

I am filing because I am not working at all, haven’t for more than a year and most likely will not be able to within the next 6 months, if ever. :rolleyes:

yep ss thinks I should be able to go out and pour concrete with my cane. I will get a attorney and pay them a bunch of money that they don’t deserve. Its all a big game that makes me extremely mad. LOL

Well I’m very sorry that you guys aren’t able to work at all. I am fortunate to be able to do some work so at least I have some income coming in. It’s still far less than what I was making before. But I guess as long as I am able to do something, I will. It looks like a long wait for disability to kick in so good luck and my prayers are with you. Gabrielle

I was lucky enough to be able to retire from the union and so get a pension so money is really not the issue with me. The issue is they deny people like us that cannot return at all to the work they used to do. What the heck happend to them retraining you in a different feild. I even ask about it and I know it is still availible. The point being is that I payed in for 35 plus years and I cannot return to full time work if I wanted too, well not in the field that is all I know. And I do not think I could put in a full day of doing anything. Sorry for the rant but sometimes I think the gov thinks I am stupid and did not pay attention to some of the programs they promised us for our paying in every check.

They have not changed one bit, or if anything they have gotten harder to get anything out of them. There is absolutely no reason to treat people like you and others who have paid into the system and who are now sick and need some help. A person who is sick does not feel like going thru all this crap to get something done. They wonder why some people go off and go into the federal and state buildings and kill people and even themselves, and being treated the way they are now treating you is no wonder to me at all. Julie, when you go you need to take a couple of friends with you…Smith and Wesson. They speak louder than words and are pretty good advocates when it comes to makeing a case.When a person is depressed by this crap, anything can happen with being in severe pain and all. What have we got to lose anyway ? Alot of pain and suffering ? People with severe residuals, and that is all they can expect for the rest of their life, don’t have alot to lose. Good luck to you and may God please help and bless you someway.
Your GBS comrad in arms.

Drummer

Hello,

I finally got a letter today from my lawyer stating my SS Disability hearing will be in February. I have an appointment with my Neuro on Monday and am still waiting on forms that I gave my MD in November to be filled out and returned to me. I had a lumbar puncture a couple of weeks ago and will get the results at my visit on Monday. Unfortunatly we are in the middle of a snow storm with 5 -12 inches by Monday morning, Pray the roads will be clear for my 30 minute trip to see my Neuro.
Thanks for the great advise. Anything else someone could add would be much appreciated.
Bonnie:cool:

Julie, you can sign up for SSI while you are waiting for your SS. There is a 6 month waiting period before you can get SS, so just go ahead and get your SSI while your are waiting for your first SS check. Actually my SSI with the dental and eyeglasses and other things was better for me than the SS, but after 6 month waiting period I had to drop SSI and start getting my SS. Then, after getting my first SS check, I then had to wait for two years before I could get on Medicare. That is their rules, so what can we do.
I hope this helps some to all who may be going through the same things you are Julie.
God bless,
Drummer

[QUOTE=Miss_30daysStrong]Hi, everyone. I’m having issues with trying to receive disability. I’m recovering from GBS and this whole disability situation is becoming stressful. The phone conversations over the phone, the lack of willingness from the operator to ACTUALLY give you information to help you is not being given to me. Has anyone else had any problems with the disability/SSI process? If so, PLEASE share any advice you have, to help me get through this long, draining process.
Thanks[/QUOTE]been waiting since 05 in indiana so i dont know were you are but if its like ind its a long wait unless you are drunk or drugy sorry for news but true.:(

[QUOTE=bonkin]Hello everyone,

I am 3+ years post GBS and still fighting for my disability claim. My first application was denied, saying that my condition should not last more than 12 months so I was denied. I thought I would get better. All the Dr.’s said so, just give yourself a little time you will be back to your old self in no time. Well it did not happen and after talking to several people I put in my second application for disability. I went to the local SS office with all my dates and information. I kept all my EOB from my insuance claims to help me with the dates of testing etc. I had a very competent woman who helped me and I could see she thought I should get approved. Well later they (SS) sent me to see one of their Dr.’s . He did a history and had seen some GBS patients before when he was in private practice. He did a short physical exam. But, it was not to be. I was denied a second time. This time I contacted a lawyer and we reapplied, with more dates to remember etc. etc. After the second denial I had to apply for a hearing. That was almost 2 years ago and I have yet to recieve my hearing date. I talked to my lawyer last week and he said I should be scheduled soon, at least by the first of next year. I still need to get my Dr. to fill out some forms for my lawyer or at least write a letter about my condition. She seem hesitant to do so and has been on maternity leave the last few months. I will see her for a regular visit next month. She did send me for a Occupational Therphy Evaluation a few months ago, so hopefully the results of that will help my case.
I keep thinking, maybe I could go back to work part time doing something. Then I have a day like today. I went shopping for birthday gifts for my two granddaughters. I am exhausted, and not done shopping……..
I still feel fragmented.
I hope you have better luck with the process than I have.
Someone told me that most of the people that have had GBS get approved for the disability for psychological reasons than physical. Go figure.
Take Care,
Bonnie:cool:[/QUOTE]same thing here to but you said it there making us insane with all red tape ekkkkkkkkkkkkkkk:D 😀