First, if you can work, you are not 'disabled' in the eyes of the SSA (Social Security Administration). Not only must you be unable to work at your last job, but during the course of the long process, you have to prove you can't work any job...making sandwiches at a sub shop, greeting people at Wal-Mart, taking tickets at the movie theater, even laying in bed at home and working from your laptop. Chances are, if you can do any of these, you aren't going to be approved. (And, don't we all know how rocky every day can be! One day feeling good and the next we have dislocated a rib!) Second, it can't just be you that feels this way. You must have backing from your doctors that say you are unable to work as well. You can't be working and decide that when you get fired you will try to get on SSD (Social Security Disability). You actually have to be disabled, and unable to work to be eligible. (There are other criteria as well, including that your condition will keep you disabled for more than 12 months, or result in death.)
So, when exactly did you become disabled? It is a tricky question. For me, it was the day after the last day I worked. I was having so many issues at work because of my EDS. there were many, but some included exacerbated back pain and wrist pain and getting written up for missing too much work. I eventually was 'told' I needed to quit or be fired. They couldn't legally fire me for the medical reasons, but I decided it was a good time for me to leave. I really was having too many physical problems to continue working, and they were just getting worse by the day. I worked my last day on May 28, 2008. So, the date I became disabled, as in no longer able to continue working for even one more day, was May 29, 2008. The sooner after this date that you apply, the better. Apply as quickly as possible to get the process started. First, it takes a long time. Your doctor must agree on this date too. If you aren't working but are managing to go to school, you might find it harder to get approved. Attending classes just shows the SSA that you are able to keep commitments and function properly in such an environment.
To apply, you can go in person to your local SSA office, or you can apply online at the SSA website. My favorite website for info on how to apply, cool tricks and tips, and super straightforward answers to FAQs is here. I highly recommend that BEFORE you apply for SSD, you should really check this out and do some homework.You will be filling out very specific info. You will do a few interviews with people over the phone and in office at the SSA office in your area, and then you will wait. I waited several months before I got word. You should be VERY prepared ahead of time.
If you get approved on the first try, great for you! Hooray!
To be honest though, most people don't.
If you don't get approved, this is where they say, "GET A LAWYER!" You certainly don't have to, but there is NO way I could have done this without mine; if not just for having someone with expertise in the SSD field, they also have to do the horrific piles of paperwork written in crazy legal mumbo-jumbo! The lawyers don't get paid unless you win your case. I didn't have to front any money. They get a lump-sum from your SSD if you win. The amount is set ahead of time by the SSA and the Federal Government. All lawyers should charge the same percentage.
The appeal (your SECOND ATTEMPT at getting SSD):
If at first you don't succeed...well, now is time to get even more hunkered down. You have a small window to appeal. My lawyer did this for me. Basically, they refile all of your paperwork and a different team investigates your case. And, then....they will probably deny you again! Yikes!
I was told most cases go on to ROUND 3: the hearing. Mine did. Once you receive your second denial from the SSA, you can file to go in front of a judge and make an appeal in court. The majority of SSD cases that actually get approved are done so in this round. Level 3. The big one. You thought you had some waiting to do before? Well, now is the time to be patient. This takes even longer. It also involves a lot more paperwork. Yippee!
Once you get your hearing date, you will have to prepare all of the documents. My hearing was on September 2, 2009. That means from the first application being filed all the way to the hearing where I saw a judge, it took roughly one year and five months. During this time, I was not able to work. During this time I had no insurance. And, during this time I really got to understand what patience means!
Here are my personal tips, things I have learned from friends who went through the process, and from lawyers:
1. From the very first moment you apply until your court date (if you have to go that far), YOU MUST continue to see doctors. This was very challenging for me. I had no money. I had no insurance. Bottom line, the SSA doesn't care. IF YOU DON'T HAVE DETAILED, CONTINUING DOCTOR'S RECORDS, YOU ARE NOT GOING TO BE APPROVED. You must go to the doctor regularly. If this means going to your local free or discount clinic, begging for your doc's office to give you discount pricing, going to doctors farther across town, it doesn't matter. Do it! They want to see that you are so sick that you have to still see doctors. They also want to see that you are willing to see doctors to help your situation.
2. A general doctor, like your regular family doctor, is probably not enough. My lawyer advised me that I really need to try and see specialists as well. The more doctors to back up your EDS problems, the better. Have mental health problems, too? Seeing your psychiatrist is important. This could hold weight, too. Whichever doctors you do see, make sure they all know you are trying to get approved for SSD. That way, when the time comes for them to fill out their paperwork, they are prepared.
3. Don't go getting a job half way through your wait. This will probably ruin your chances. If you HAVE to work, there ARE LIMITS on the amount of hours you can work before you void your process. It is REALLY recommended that you DO NOT work, of course.
4. Don't tell lies, but don't minimize your symptoms either. From the first phone interview forward, they are going to ask you questions about how you get ready in the morning, how you sleep, if you need help bathing or getting dressed, if you are able to cook, if you clean, if you do laundry, what medicines you are taking, if your living situation is one where you can get help with all of this, etc. The questions will get personal. If you aren't really straightforward and up front, they are not going to even give your case a second look. I have trouble walking most of the time. There is no way I can vacuum, heck - standing up can be too much. If I have dislocated my shoulders or ribs, I need some help getting dressed. I can't stand in the shower, but sometimes I can't sit either, because the hot water really just makes my POTS worse. I mean, you really have to get down and dirty and just tell them everything. And, if it happens often, don't just say that it is only 'sometimes'. MAKE YOUR CASE. Don't hold back.
5. If you are approved, they automatically have a 'waiting period' before you get your benefits. It is five months. I applied at the beginning of June in 2008. When I was approved, they didn't backdate my approval the June X, 2008. They backdated it to five months later, November 2008. Be prepared for this.
6. If you are approved, you aren't eligible for Medicare for 2 years...after the 'date' you started your benefits. This is not the month you became disabled. This is the month you became disabled PLUS five months. So, although I became disabled in on May 28, 2008, my Medicare eligibility date is November 2010. (That is, November is my 5 month mark, and you have to wait two years.) Confusing, I know! So...I still don't have Medicare. I am STILL waiting. Ugh! You may be able to get Medicaid before that date. I am unable to; I make 'too much money' from my SSD earnings. What?! Yes, seriously. Not that what I get is near enough, but it is too much according to Medicaid.
7. The amount of earnings you will get from SSD, if approved, is based on your work history and how much you have paid into the SSA fund over all the years you worked. The more money you make while you are working, the more money your SSD checks will be, as you have paid more into the system. During the application process you will be asked to provide detailed work history information. They will compare this with the info they have from the IRS as well.
If I think of anything else, I will post it at a later date. I hope this helps you!!
My next post will be the approval letter I received from the SSA. It was written by the judge and I hope it will help you to see what he found moving in my 'testimony' and the parts that made him agree that I was clearly disabled.
I hope this find all of you well, not in too much pain, and your heart full!