Living with Dystonia: Social Security Benefits

Tips on navigating federal disability benefits for dystonia patients

November 26, 2018

As an organization, one of our key advocacy targets is the lack of an explicit dystonia listing in our nation’s Social Security Disability benefits program. The debilitating nature of moderate to severe dystonic symptoms, without a doubt, can negatively impact a person’s ability to work, let alone their ability to function day-to-day.

Dystonia patients show great courage in their willingness to fight, to see the good in everything, and to sustain a level of normalcy that most other people take for granted. We hope to honor that bravery in advocating that dystonia be added to the federal disability listing as soon as possible, making the qualification process easier for those afflicted and their families.

In the meantime, patients can secure benefits by qualifying through a secondary method. As with any SSD claim, especially those with unlisted causation, thorough records are a requirement and can hasten the process. Well before applying, it is recommend that dystonia patients obtain detailed copies of medical records, compile doctor visit logs, and gather any photo or video evidence of their symptoms, whether or not they are consistent or show changes over time. With the required documentation, dystonia patients can qualify by:

  • Documenting symptoms that match a listed condition
  • Filing using a concurrent medical condition
  • Submitting to a functional capacity evaluation (FCE)

Granted, none of these are perfect solutions. Not all patients with dystonia exhibit symptoms to qualify under Parkinson’s or seizure, for instance. Additionally, it is somewhat uncommon for patients to be afflicted with a second qualifying disease or disorder. Ordering and participating in an FCE can take hours, sometimes stretching over two days. These tests, though, conducted one-on-one with a certified therapy professional, can be the best way to demonstrate in real-time a person’s ability or inability to perform physical tasks specific to their industry and workplace.

Although the size and scope of our organization do not yet support an expanded role in directly assisting dystonia patients in their application for disability benefits, goals lie ahead in our roadmap that include more detailed information on the subject, in addition to the development of a trusted listing of SSD attorneys, case workers, and volunteers.