Suggestions on Filing Disability

Be honest with your employer.  They can be very supportive and an assistance with completing the required paperwork.  Check with your employer about disability plans you have at work.

Major things to remember when filing Social Security:

• Be your own activist
• Send all medical files - etc....
  Go to the doctors that Social Security will send you to.
•  How often your symptoms like strokes, migraines, walking and make sure you document everything.
• Why you cannot work --- not the illness but the reason why must be documented.

Be patient as they are very understanding and surprised when you are willing to assist them.  

Take along a file folder containing everything they could possibly need for their review.    As a result, they didn't have to spend a great deal of time gathering information and since they had everything they needed at their fingertips, it had to speed things up immensely.

 
Prepare a folder with the following:

A typed sheet with our names, address, birth dates, social security numbers, doctors' info, and bank information (account #, etc.)

A letter from his neurologist stating that he considered Mike permanently and totally disabled

a letter from the neuropsychologist who performed neuro-cognitive testing on your spouse stating that they considered him disabled

every medical record you have since diagnosed.

ORIGINALS and copies of the birth certificates for your spouse, yourself, and any children (minor children may receive benefits on SSD).  It is important to bring the originals so that they can verify the copies.  Copies alone will not be accepted and may delay the process.  They will return the originals to you at that meeting once they've verified the copies are legitimate.

Every medical record you have since diagnosed.

ORIGINAL and a copy of marriage license.  (Same as above)

Copies of any divorce decrees for previous marriages 

Copy of a check and a deposit slip from the bank account where the disability funds will be direct deposited.  These forms contain important routing information that they will need to process the payments

Educate Social Security about CADASIL.  You've got to remember that as rare as this disease is, chances are good the Social Security Administration is not very familiar with it --- why should they be different than everyone else?) – Print out information about CADASIL. Example website:
http://www.neurocast.com/site/content/sessions_12_2000.asp
Take as much information concerning CADASIL which describes the symptoms, etc.  

As you can imagine, this folder was about 1 1/2 inches thick.
I'm sure if you've lived with CADASIL longer, it will be an even larger file.