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. 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, the economic burden of FTD can be extreme. 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. The process of applying for benefits can be daunting but the following resources can provide crucial information to help you get started.

The Social Security Administration has identified certain diagnoses under the Compassionate Allowances List (CAL) which 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, the person must still meet other requirements for SSDI which can be found here.

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 Supplemental Security Income (SSI), which is a needs-based financial assistance program.

When applying for SSDI or SSI benefits, be sure to 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. It is often recommended to include 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). During this period, families often seek health insurance coverage through a spouse, COBRA, or their state health insurance marketplace. 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 by visiting this link.