Dear HelpLine,
My dad is 55 and had to leave his job after he was diagnosed with FTD. Are there Social Security benefits that we are eligible for?

As a young-onset form of dementia that typically strikes during the prime earning years, FTD often has a significant impact on a family’s financial situation. The economic burden of FTD can be extreme through a combination of loss of income and health coverage, the increased need for medical and other healthcare services, and symptoms that often include financial mismanagement and recklessness. In fact, a study funded and co-written by AFTD found that the average annual costs of FTD are nearly double those associated with Alzheimer’s disease.

Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) are federal benefit programs that can help persons living with FTD access financial relief and medical benefits after a diagnosis. SSDI is for those not already receiving Social Security retirement benefits and are under 65. Applying for benefits can be daunting, but the following resources offer information to help you get started.

The Social Security Administration has identified certain diagnoses under the Compassionate Allowances List that qualify an applicant for expedited medical review, provided they have a properly documented diagnosis. All of the FTD disorders are included under CAL. A full description of the program and additional information are available on the Social Security website. Although CAL can help expedite an applicant’s medical review, there is no special application, and the person diagnosed must still meet other requirements for Social Security benefits, which can be found on the Social Security Administration’s website.

Individuals with a limited work history may not have paid enough into Social Security to be eligible to receive SSDI. In this case, the person may qualify for benefits through SSI, a needs-based financial assistance program. Those with a disability who meet the financial need requirement can receive benefits, even over the age of 65.

When applying for SSDI or SSI benefits, include your or your loved one’s diagnosis exactly as it is listed on the CAL. For example, primary progressive aphasia (PPA) is listed, but subtypes such as semantic variant PPA are not specified. Accompanying medical records must clearly indicate the diagnosis, and the person applying must still meet all other qualifications for SSDI or SSI. Applicants can also consider including a supplementary letter from the diagnosing physician reiterating the diagnosis. Throughout the application process, be sure to specifically indicate that you are applying for consideration under the Compassionate Allowances program.

If you or a loved one qualify for SSDI benefits, eligibility for Medicare begins 24 months after the date of disability (not always the application date). Families often seek health insurance coverage through a spouse, COBRA, or their state health insurance marketplace during this period. Those receiving SSI benefits become eligible for Medicare at age 65 but can receive medical coverage through Medicaid in the interim. Information on how to apply for disability benefits, along with the applicable forms, can be found through the Social Security Administration’s Adult Disability Starter Kit.