How do I apply for SSI or SSDI?

Make an appointment to visit your local Social Security office or call Social Security at 800-772-1213. You can apply online for SSDI.

What medical condition will qualify me to apply for SSI or SSDI?

Using the Blue Book

To file a claim or apply for SSI or SSDI, you will need to show a medical condition listed in the SSA’s Blue Book and meet the requirements for the condition. Because it is a rare disorder, there is no listing for FD/MAS in the Blue Book. If you have been qualified with FD/MAS, use the listing for musculoskeletal disorders or hyperthyroidism in the Blue Book when applying for SSI or SSDI.

Using a Medical Vocational Allowance:

A Medical Vocational Allowance is an exception that allows someone to receive benefits even if they don’t meet a Blue Book listing.

To qualify for this exception, your doctor must fill out a Residual Functional Capacity (RFC) evaluation sheet.  You can download the RFC form from SSA.  In the RFC, your doctor must write in detail about your condition, your symptoms, and how the symptoms make it impossible for you to work.  Then you can submit the RFC, your medical records, and your claim form to the SSA.

The SSA will examine your documents, your medical records, and the RFC.  They will also look at things like your age, your work history, and your education to determine if there is any other kind of work that you can do.  If they can’t find any other type of work that you can do with the limitations caused by FD/MAS, then you will be eligible to be approved for disability benefits.

What if I am denied SSI or SSDI?

You can challenge a decision that denies you SSI or SSDI through several methods.  This process can take months, even years, but there is a chance of success.  If you are denied, we recommend contacting the SSA to discuss the appeal process and/or obtaining a lawyer to advise you.

Additional Resources

Global Genes Badge

FD/MAS Alliance is a recipient of the Financial Advocacy in RARE Impact Grant sponsored by Global Genes.  Thanks to this award, FD/MAS Financial Literacy 101 is made possible.  We thank Michael Beloff, CFP®, ChSNC® Wealth Advisor at Belvedere Wealth Partners, for donating his time and financial expertise and Caroline Fuchs, CAE, for contributing her time, communications, and digital strategy expertise to the FD/MAS community for this resource.