Social Security Disability Assistance
Social Security Disability Insurance (SSDI) is an assistance program administered by the Social Security Administration (SSA) and established under Title II of the Social Security Act. As its name suggests, SSDI provides benefits to American citizens with chronic disabilities that strongly impair their ability to work. However, SSA requires that applicants to the SSDI program not receive benefits until five full months after they are approved, to establish that the impairment is chronic.
While it is certainly a good thing that the condition of some approved applicants improves enough to reconsider their benefit status, for many rare diseases, particularly genetic diseases, these five months are nothing more than an unnecessary barrier as it is virtually certain that no improvement will take place. NORD is looking to address this by expanding awareness within SSA and improving the “compassionate allowances” process so that individuals with no possibility of improvement in their chronic disability receive their SSDI benefits without a needless wait.



