How to Apply for Disability Benefits with ALS

The ALS journey is incredibly difficult physically. But knowing what to do and where to get help each step of the way adds to the stress.

Below is an article we are passing along to you with lots of helpful links on applying for disability benefits for ALS. Remember, too, if you ever have any questions or need assistance, we at ALS in the Heartland (402-592-2374) are always here to help as well.


ALS is a progressive illness that eventually leads to complete motor function loss. If you or a loved one has been diagnosed with ALS, fear not: You will medically qualify for Social Security disability benefits. The Social Security Administration (SSA) offers disability benefits as a financial cushion to help families in need.

Medically Qualifying with ALS

Typically, applicants need be diagnosed with an illness listed in the SSA’s Blue Book to qualify for disability benefits. For people with ALS, medically qualifying is very straightforward. You can typically qualify with just a diagnosis. The SSA suggests documentation of a clinically appropriate medical history, or neurological findings consistent with the diagnosis of ALS, and the results of any electrophysiological and neuroimaging testing.

Compassionate Allowances

The average disability claimant waits 5+ months to be approved, with some claimants waiting for two years or more to be approved. This will not be the case if you have been diagnosed with ALS. The SSA designed a program called the Compassionate Allowance Initiative to expedite claimants who are clearly disabled and in need of resources quickly. You do not need to do anything different when applying, nor do you need to fill out any additional paperwork. People with ALS will usually be approved in as little as 10 days.

Receiving Your Benefits

Unfortunately, even if you are approved in 10 days, you’ll still need to wait for five months to begin receiving your benefits. The SSA does not start paying beneficiaries in under five months, regardless of the severity of your illness. The good news is that you will not need to wait for health insurance. Most Social Security recipients need to wait a full 24 months to receive Medicare. ALS is currently one of only two disabilities where approved recipients will be automatically enrolled onto Medicare upon approval. The SSA enacted this allowance in July of 2001. The other disability where the Medicare 24-month waiting process is waived is End-Stage Renal Disease.

Your Age at Diagnosis

Keep in mind that you cannot receive Social Security disability benefits if you’re over your full retirement age (65-67, depending on your year of birth), or if you were diagnosed with ALS after taking early retirement benefits. This means that if you’re diagnosed at age 67 or older, you should not bother applying for Social Security disability benefits, as you won’t be approved.

Starting Your Application

Most applicants can apply online. Because ALS should automatically medically qualify, the only reason you could be denied could be due to a technicality. Here are some reasons for denial that are uncommon, but possible:

  • You haven’t worked recently (within the past 5 years)
  • You never worked throughout adulthood at all, and you have a spouse who earns a decent living
  • You’re too old to qualify for disability insurance
  • There is an error on your application*

*This is a very common reason for applicants to be denied! If the SSA cannot retrieve your ALS diagnosis from your doctor, you will not be approved for disability benefits. Be sure to fill out the application as carefully as possible to ensure that you are not denied to a technicality. You should be approved quickly and can focus on your health instead of finances.

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