Filing Social Security

Educate those of the Social Security Administration (SSA) about CADASIL.  You've got to remember that as rare as this disease is, the chances are good that employees at the Social Security Administration are not very familiar with CADASIL.  Why should they be different than everyone else?   Below are suggestions on how to file.  These suggestions have worked for other patients and even a lawyer.  One of our Directors worked with the Social Security Administration to get her husband’s disability.   The Social Security Office called her and gave her more ideas to follow, which are incorporated below.

Major things to remember when filing Social Security: 

  • Be very patient. Employees with the Social Security Administration are very understanding and will be surprised when you are willing to assist them.

  • Be your own activist.

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

  • Go to the doctors that the SSA will send you to. 

  • It is vital that you insist on giving this additional information on CADASIL to the SSA to better document your case. Even if SSA personnel say the documentation is not needed, demand that the documentation be retained by the SSA to support your case!

  • Prepare a file folder to submit to the SSA. It is important to bring originals so that the SSA 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.

  • ORIGINALS and copies of birth certificates for yourself, your spouse, and any children (as minor children may receive SSD benefits). 

  • ORIGINALS and a copy of any marriage licenses and divorce decrees (even from previous marriages).

  • An original typed sheet with the name, address, birth dates, and social security numbers for your spouse, yourself, and any children. Also include contact information for physicians and any bank account information. 

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

  • An original letter and copy from the neurologist stating that the patient is permanently and totally disabled. 

  • An original letter and copy from the neuropsychologist who performed neuro-cognitive testing on the patient stating that they considered the patient disabled on every medical record since the CADASIL diagnosis.

  • Copies of every medical record since the CADASIL diagnosis. 

  • Copy of your documentation logs that notates your symptoms like strokes, migraines, difficulty in walking, etc. 

  • Copy of your work documentation log which indicates the reason why you cannot work – not the illness.

  • Copies of educational materials/literature on CADASIL from websites such as NIH, our website, etc.  (Don’t forget to print out a CADASIL brochure, too!) 

  • Leave any un-requested copies (not originals) of information from the folder you prepared with the SSA to enhance your disability request.

Compliments: August 16, 2009   Thanks for your website & all the help for people with CADASIL. God Bless you & your family and I wanted you to know that I have been tentatively approved for Social Security Disability after following your helpful guideline. Ed  (Law)