Disability Benefits for Amyotrophic Lateral Sclerosis (ALS)

If you've been diagnosed with ALS, you're likely to qualify automatically for disability benefits from the Social Security Administration (SSA).

What Is Amyotrophic Lateral Sclerosis (ALS)?

ALS (commonly known as Lou Gehrig's disease) is a degenerative disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control. ALS is in a category of disorders known as motor neuron diseases, which cause deterioration of the cells that control how voluntary muscles—the muscles we use to move—work.

People with ALS often first experience symptoms of muscle weakness and twitching in their hands, feet, or limbs. As the disease advances and nerve cells are destroyed, their muscles get weaker, eventually resulting in difficulty walking, speaking, swallowing, and breathing. The disease is generally fatal three to five years from when symptoms first appear.

Does Social Security Consider ALS a Disability?

Yes. Because ALS is an exceptionally debilitating illness with no known cure, the SSA has placed it on its list of Compassionate Allowance Conditions, which can qualify you for expedited processing of your disability application. If you've submitted a diagnosis of ALS to the SSA, along with good medical documentation, the agency will find that you automatically meet the requirements of the Blue Book Listing 11.10 for amyotrophic lateral sclerosis.

How Do I Receive Automatic Benefits for ALS?

Your medical records must include a formal diagnosis of ALS. No single test can establish the presence of ALS, so the diagnosis must be made on the following:

• doctors' notes documenting symptoms of ALS
• neurological examinations (tests of reflexes and motor function) consistent with a diagnosis of ALS
• electromyography (EMG), a recording technique that detects electrical activity of muscle fibers, and
• nerve conduction studies, which detect the ability of nerves to send electrical impulses.

Your doctor might also order blood and urine tests or a muscle biopsy in order to rule out other diseases that have similar symptoms to ALS.

If your medical provider is a family physician or general practitioner, you'll likely have to see a neurologist in order to be diagnosed. Social Security will find you disabled if you have provided the above medical documentation and a neurologist has officially diagnosed you with ALS.

How Quickly Can I Receive Benefits for ALS?

Under the Compassionate Allowances program, your disability application will be fast-tracked due to your ALS diagnosis. You don't have to do anything additional to qualify for expedited processing—having a diagnosis of ALS will make you automatically eligible. You should receive a decision within a couple of weeks and possibly even as quickly as a few days (as opposed to the usual several months).

Am I Eligible for SSDI for ALS?

Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) are the two types of disability benefits offered by the Social Security Administration. Applicants who are approved for SSI can start receiving benefits right away. But applicants who are approved for SSDI normally need to wait five months before Social Security starts paying benefits.

The ALS Disability Insurance Access Act of 2019 eliminated the five-month waiting period for people with ALS who were approved for SSDI benefits on or after July 23, 2020. You can start receiving your SSDI benefits as soon as your application is approved.

Can I Get Medicare for ALS?

Once you're approved for SSDI benefits, you're automatically enrolled in Medicare. (The normal two-year waiting period to qualify for Medicare doesn't apply for people with ALS). Social Security will deduct monthly premiums from your disability check for Medicare Part B, which helps pay for doctors' visits and home health care. You can decline Part B (although you might incur a penalty) and keep the premium if you'd prefer to be insured in a different way, such as your spouse's health care plan.

Applying for Disability Benefits for ALS

The SSA provides many ways to apply for disability benefits:

• Go online to the Social Security website. Filing online has many benefits, such as giving you a dated receipt of your application.
• Contact the SSA by phone to start your application at 800-722-1213 between 8 a.m. and 7 p.m Monday through Friday. If you're deaf or hard of hearing, you can call the TTY number at 800-325-0778.
• Visit your local Social Security field office. Please note that this option can involve lengthy waiting and COVID-19 precautions.

_{Updated November 28, 2022}