Amyotrophic lateral sclerosis (also known as ALS, Lou Gehrig's disease, or motor neuron disease) affects the nerve cells (neurons) and spinal cord. It usually appears in those who are over age 50, and 90% of the time, there is no known cause (10% of cases are genetic in origin).
The main symptom of ALS is muscle weakness and twitching, usually starting in the arms and legs. It then spreads to other parts of the body, causing difficulty breathing and swallowing, speech problems, muscle cramps and contractions, muscle atrophy, and eventually, an inability to breathe.
ALS is a progressive disease, and there is no cure. However, the disease's advancement can be slowed through medication, and there are treatments available to help minimize symptoms.
If you have been diagnosed with ALS and are over the age of 18, you should qualify for Social Security disability benefits. ALS is included on the SSA's "Listing of Impairments," meaning that the Social Security Administration (SSA) has established specific criteria which, if met by someone with ALS, automatically makes the applicant eligible for disability benefits.
To get approved for disability benefits based on a diagnosis of ALS, your medical records must include a specific ALS diagnosis. Because there is no one test that establishes the presence of ALS, the ALS listing provides that this diagnosis must be made following the generally accepted practices and clinical procedures used to diagnose ALS, and for your records to provide evidence of this. However, if a neurologist has diagnosed you with ALS, Social Security should approve you for disability benefits.
Your case should be fast-tracked due to your ALS diagnosis under the Compassionate Allowances program. This means that your case should be decided within a couple of weeks. And if you were approved for SSDI benefits based on ALS on or after July 23, 2020, there is no waiting period to collect benefits (for all other conditions, there is a five-month waiting period). With SSI, there is no waiting period.
If you're applying for Social Security disability benefits based on your ALS, the SSA will review your medical records, and will want to see a specific ALS diagnosis. They will also look for findings that support this diagnosis, including:
To apply for disability benefits, call the Social Security Administration's at (800) 772-1213. Depending on your preference, they will make an appointment for you to complete an application either via telephone or at your local SSA office. You can also apply for SSDI benefits online at www.ssa.gov.
If you are approved for SSDI benefits based on ALS, your eligibility for Medicare should start right away (rather than be subject to a two-year waiting period).
Updated April 8, 2021