Personal Experience/Advice 1: Judy Blackman

Here is a link to the Social Security site:
http://www.ssa.gov/disability/

I did not go through an attorney, but being tenacious by nature and with my husband's help, it finally went through. Here are things that I learned:

1. The more letters and info from qualified experts the better. YOU pick and choose who. I had letters from my Ophthalmologist, Neurologist, Neuro-Ophthalmologist and an excellent therapist.

2. When you send their form to your doctors, enclose a short letter with a self-addressed, stamped envelope requesting that it be returned to you (don't include SS's envelope) so that you may keep a file for yourself. If you don't like the letter the doctor wrote - tell him so and request another describing this and that symptom. If the doctor does send it directly to SS go to his office and request a copy of it. If they want you to sign a blank form - write across the bottom of it that you are signing a blank form, date and sign it.

3. Always keep a file of everything that goes on. Copies of every letter and notes regarding phone conversations, doctor appts., etc.

4. Print out and send the Blepharospasm main pages that deal with BEB, Meige and Apraxia stressing that Apraxia is one of the most difficult problems to fix both to SS and any doctor that you deal with.
   Note: One of the SS reps called when I was not at home and my daughter answered the phone. Thankfully she is medically trained (EMT, phlebotomy, etc.) not to mention being her Mother's daughter :) He flippantly asked when I was going to have the surgery to fix my eyes. She carefully stated that he would have to ask me that question himself. When I called him back and said that according to much documented evidence it didn't seem that there was a good enough ratio of success with surgery - he laughed and then agreed with me.

5. When they tell you to go to their doctors for an examination (they wanted both a medical and mental evaluation on me). State that according to their pamphlet entitled: 'Social Security - A Special Examination Is Needed for Your Disability Claim' (Pg. 2) "The examination will be performed by your doctor or another doctor". This means that you can have your choice of medical expert that is qualified to dx your situation.

   They usually send you to medical interns that don't know what BEB, etc. is. (I had already sent fully descriptive letters from the four above specialists citing a rating for disability.) Upon further questioning, my husband discovered that SS pays only a sub-standard rate for the testing and most legitimate physicians won't accept that $ amount. We said that we would be more than happy to pay the difference to the doctor of our choice that had the qualifications needed (in my case it was the head of the movement disorder clinic). The case worker said yes they recognized his name and he was very qualified but he refused to do their tests. Duh! He wouldn't accept their payment rate. To make a long story short she called me back in five minutes and said - Oh, the tests won't be necessary - the head of the physician's board just OK'd it.

It took me 13 months, one turn-down and one appeal but it finally went through and was retroactive to the original qualifying date. Once you fail to appeal in the required time frame you lose that retro date.

If you don't feel up for the fight (which I certainly understand) hire a lawyer that specializes in disability cases - they usually get a chunk of the final payment but it would be worth it.

Above all ~ hang in there - they count on people getting frustrated and dropping the whole thing.

Judy Blackman