CureDuchenne Cares Advocacy Efforts Succeed in Adding Duchenne to the Social Security Administration Compassionate Allowance List (CAL)
Social Security Disability Insurance (SSDI) benefits are a financial lifeline for millions of Americans who are suffering from disabilities, however qualifying for these benefits is not easy – especially with a rare and relatively unknown disease.
Though approximately 11,000,000 Americans currently receive some form of disability benefits from Social Security, millions more have applied and are still awaiting a decision. With high standards for approval and the burden of proof on the applicant, many families don’t know what to do or how to navigate the process. Obtaining a determination can take months or even years, with no guaranteed outcome.
But the Social Security Administration Compassionate Allowance List (CAL) is a special designation program that significantly expedites the approval process to just weeks for a list of 254 severe conditions, offering immediate financial assistance to people who need it the most.
In July of 2018, Tiffany Cook, Senior Director of CureDuchenne Cares, gathered the information necessary to file a lengthy application in the hopes of adding Duchenne muscular dystrophy to the Compassionate Allowance List. Recently, this application was approved – marking a significant triumph for thousands of individuals and families who have battled for benefits in the past, and a major step forward on behalf of all the families who will never endure what this process once entailed.
Rather than waiting months or years to get records submitted and approved, or even having to explain what Duchenne is to a government agency, individuals living with Duchenne who are over the age of 18 can now get disability benefits approved faster and easier.
By eliminating hurdles to obtain benefits, the addition of Duchenne to the CAL program begins to answer unmet needs for adults living with Duchenne. Unfortunately, many families have already gone through the SSDI application process, perhaps had a negative outcome, and could potentially be unaware that this program is now available.
CureDuchenne Cares is embedded in the community not just to advocate, but to produce real, tangible results that improve the lives of everyone living with Duchenne. CureDuchenne extends a heartfelt thanks to Tiffany for championing this initiative on behalf of thousands of individuals and families coping with Duchenne. Her efforts reduced the bureaucracy and roadblocks SSDI applicants with Duchenne must overcome when seeking to alleviate their financial burden, and established official recognition from the government that life’s journey with Duchenne is severely challenging.
Read more about the addition of this and other diseases in SSA’s press release here: https://www.ssa.gov/news/press/releases/2021/#8-2021-1
To file for disability benefits, check the status of an existing claim, or learn more about Social Security’s disability programs, please visit: https://ssa.gov/benefits/disability
If you have questions, please contact CureDuchenne Cares at: Cares@CureDuchenne.org