Amyotrophic Lateral Sclerosis (ALS), otherwise known as Lou Gehrig’s disease, is a rapidly progressive disease that destroys neurons responsible for controlling voluntary muscles. Those who suffer from it will lose the ability to control their limbs, their ability to speak, and, eventually, their ability to breathe. There is no known cure for ALS, although medications exist to minimize symptoms, and the disease is usually fatal within two to five years.
Because of the severity of the disease, most people who are diagnosed with ALS will qualify for Social Security Disability Insurance (SSDI) and Medicare benefits, regardless of their age. People with ALS often have to quit their jobs quickly, and, many times, a spouse or family member will have to stop working as well to provide care for the afflicted individual. Doing so could result in disastrous financial hardship.
Fortunately, ALS is one of the diseases on Social Security Administration’s (SSA) Compassionate Allowance list. These are conditions that are so dire that a diagnosis automatically meets the standards to qualify for disability benefits, and the claim will be fast-tracked for approval, usually within a couple of weeks.
ALS is a difficult disease to diagnose, however, because there is no single test or scan that can confirm it. Symptoms can escalate quickly, and, by the time individuals receive an ALS diagnosis, they are likely already severely disabled and incapable of working. SSA will look for a specific ALS diagnosis and findings that support it, including neurological evidence consistent with an ALS diagnosis, the results of tests that rule out other conditions, and a history of symptoms.
Unfortunately, getting diagnosed with a disease on the Compassionate Allowance list does not mean that you can start receiving benefits immediately. SSDI requires a waiting period of five months before beneficiaries can receive any money. That waiting period applied to ALS claims until December 2020.
After years of advocacy by the ALS community, Former President Trump signed the ALS Disability Insurance Access Act of 2019 in the final days of his administration. Unlike the other diseases on SSA’s Compassionate Allowance list, the five-month waiting period no longer applies to ALS claims approved on or after July 23, 2020. Similarly, those with ALS are eligible for Medicare benefits as soon as their SSDI benefits begin, which is a departure from the usual rule that says SSDI recipients cannot qualify for Medicare until they have been receiving benefits for two years.