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Since my mind will be more free if I have plans for the different directions this disease may go, one of the things I realize is that I may need to go on social security disability some day. I don't have any experience with this, but hear that difficulties and delays can happen.


Does anyone have words of advise for helping people in the US smoothly transition into receiving SS disability when the need arises?


Thanks in advance for sharing.



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I'm in the process of getting Federal SSD. This is how I am going about it: I am on short-term leave from my company and after 6 months I refile for long-term disability. After a year my company encourages filing for Federal SSD. Knowing this and knowing it takes 5 months after applying for SSD to get a decision - I am applying now. This way I have coverage through my company but I also have time to refile in case I have to appeal or go before a judge. My SS Agent said if I have to go before a judge it could be up to 2 years.


My advice: If you're employed be familiar with their short-term and long-term disability programs. Also, don't wait if you think you may need SSD - apply because it takes so long to get approval, etc. My SS Agent says it takes everyone no matter what 5 months for their decision.



You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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I went to a workshop on "Qualifying for Disability Benefits". A couple of pre-application tips the attorney gave: (1) Be very specific with your doctor regarding your condition....don't report "I'm tired" rather "I was dozing off at my desk". Keep accurate records between your doctor appointments so that he/she can be specific when filling out their forms. (2) Describe your absolute worst day when filling out the "Daily Activities Questionaire" section of the application (3) Don't rely on the SS agency to answer question, they are overworked and understaffed and the new employees they do have are inexperienced. (4) Use an attorney to wade through the process including obtaining records and aiding in filling out assessment forms. (5) Contact the National Organization of Social Security Claimants Representatives (NOSSCR) or 1-800-431-2804. As you said the process is long and aggravating, the experts can take the burden off your plate as they know the ropes. I hope this is helpful.


Good Luck


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I'm also in the process of applying for SSDI -- it is quite an arduous processs! I have had scleroderma for 10 years now. When I was diagnosed 10 years ago, it took about 1 1/2 years to get everything under control. I went back to work part time 20 -25 hours per week. I have an awsome employer who hired me even though I had scleroderm - yes, I know I didn't have to tell. As fate would have it, the exective director mother had passed away several years prior from scleroderma!


Early this year at work , we had a seminar with folks from social security talking about SSI and SSDI. I realized that I could apply for SSDI with their "Ticket to Work" program. I spoke with one of the SS reps at the break, she told me I should apply for SSDI right away. Currently, my doctors only want me to work no more than 10 hours per week -- I've always grappled with quiting work, but this program seems perfect. My main scleroderma problem is dealing with chronic anemia and iron deficiency from GAVE syndrome ("watermelon stomach"), along with several GI problems. My job as an independent living instructor for adults with developmental disabilities can be physically and emotionally tiring. It also exposes me to numerous trips to clinics, ER's, etc. .... not the place where someone with scleroderma should frequent. Last year from July to this past April, I had a cold/cough/sore throat off and on.


Being able to apply on line was a blessing. I started this process in April of this year. I had a phone interview with my local SS office -- he commented on how my earnings had dropped since my diagnois. Then I received the infamous questionnaire to complete along with a questionnaire for my primary care physician to complete. Both were completed and sent in the end of May ( the information from my doctor was hand delivered to SS!).


I received a call from SS last week to say they never received the paperwork from my doctor. I had an appointment with my primary care physician on Friday and he wants me to be on disabilitiy right away and will send the questionnair and copy of my file out again. I've left two messages for the lady at SS, but no response. I've had a couple of conversations with her previously, one in which she was quite sharp with me. I hate to say it, but she does not seem very competent when I speak to her or she leaves messages.


So that's my story on SSDI. Any suggestions from those wh "have been down the social security road before me" would be greatly welcome!


Take care,


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I agree that you should start applying now. I applied in November, 2004. I was denied by state and federal. I appealed and I got state in April, 2005 and federal came through by June. I had long term sick leave from my job that was up in March 2005. Social Security did backpay from March to June. I also had short term disablility that kicked in and gave me a lump sum. I had to pay that back once federal and state came through. The short term disability kept paying me 100.00 a month for two years. I didn't need to use a lawyer. If you have a doctor that knows how to word the reports you shouldn't have any trouble. Good Luck!


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Hi Vegan,


I'd recommend not even starting the process (at all) until you have talked to a disability lawyer. You cannot apply while you are still working, and you will never be paid for the first five months of not working, so you want to make certain that everything is legally and medically correct, ahead of time.


If you have disability insurance through your employer, that may have different qualification terms than through SSDIB, which is that you need to be totally and permanently disabled.


Having scleroderma does not automatically qualify anyone for benefits. What matters is exactly what symptoms you have and how the symptoms have affected you and how they impair your ability to do any work, and not just the work you have been trained for.


Thus, they could figure that you may not be able to be an airline pilot anymore, but you may still have residual skills and abilities that would make it possible for you to be a gas station clerk. Whether or not there are even any openings for gas station attendants in your city, or whether they refuse to hire you or not, is pretty much beside the point. What they look at is what you could possibly do, based on our national (not local) economy, and not what you are (or aren't) doing, if that makes any sense.


Most people think if they are sick, and can't work, then they would of course get SSDIB benefits. But the system is intentionally designed to help preclude as many people as possible from getting benefits, and to delay the delivery of those benefits as long as possible; the delay helps save taxpayers money since so many people get discouraged and drop their application somewhere along the line. You could argue that maybe they weren't really disabled anyway. Or, you could argue that they were just too sick to continue fighting what they saw as a losing battle.


Know your legal rights and responsibilities now, by studying about it online and by consulting your own disability lawyer. Their consultations are free. If you hire them, they will collect their share (automatically out of your first check) whenever your benefits are finally approved. This is NOT a do-it-yourself job. You will hear from people who did not hire a lawyer and who say the process is very easy -- but they are, far an away, the exception to the rule!


Also request copies of your medical records and read them carefully to see whether there is any information in there that would adversely affect your case. A good SSDIB lawyer will request all your medical records and review them prior to taking on your case -- because the top ones pride themselves on very high rates of winning and they do not want to take on losing cases. If you have a lawyer that does that, up front, and accepts you as a client, you will at least have a few things in your favor.


Meanwhile, do everything you can to save money (save, save, save!) and to lighten any burdens of debt. Downsize your living quarters, if possible. Figure out how you can survive for two years without your income or health insurance (Medicare benefits don't kick in for two years and COBRA rates are exhorbitant.) Many people have to sell their home, trade down their car, go without insurance, and/or move in with parents to survive the wait. And the benefits, when you do finally get them, pay so little that those changes are usually necessary anyway, unless you are very well to do.

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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