Beginning in September 2016, MDF met with senior officials at the Social Security Administration (SSA), both at their headquarters in Baltimore, Maryland and via conference call, as part of our efforts to improve the process of applying for Social Security disability benefits for people with myotonic dystrophy. As a result of many months of meetings with the agency, MDF is extremely pleased to announce that Social Security Commissioner Nancy Berryhill has agreed to add congenital myotonic dystrophy as one of three new conditions newly-included in the agency’s Compassionate Allowances program. Read the SSA press announcement here.

For individuals with congenital DM and their caregivers, this means we can eliminate much of the red tape involved in applying for disability status and successfully receiving benefits. The Compassionate Allowances program is designed to quickly identify serious medical conditions that very obviously meet Social Security's standards for disability benefits and expedite a favorable decision on benefits.

We have long recognized that navigating the Social Security disability benefits application process is long and difficult, and it can take many attempts to be successful. The MDF Social Security Admininstration Toolkit and our Warmline live phone support for SSA applicants are two ways that we have worked to improve our community's access to SSA benefits. 

The September SSA announcement is a major step forward in our efforts to improve the process for our community. This was a hard fought effort, but we know that more work remains to be carried out on behalf of other MDF community applicants. We will continue to work to improve the program for everyone in the DM community.