Amyotrophic lateral sclerosis (ALS) is a rapidly progressing nervous system disease that attacks the nerve cells responsible for voluntary muscles. Also known as Lou Gehrig’s disease after the famous baseball player with an ALS diagnosis, there’s currently no known cure.
Symptoms may start with muscle twitching, limb weakness and slurred speech. Eventually and often quickly, the disease takes control of the muscles necessary to eat, move, speak, and even breathe. Sadly, Lou Gehrig’s disease is usually fatal within 2-5 years, though 10% of patients may survive 10 years or more.
Owing to the severity of ALS, this condition now qualifies for the disability approval “fast-track” known as Compassionate Allowances (CAL). The ALS Disability Insurance Access Act of 2019 eliminates the required five-month disability waiting period for ALS applicants. This expedited access to benefits and Medicare is frequently a blessing for individuals reeling from a diagnosis.
But qualifying for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) requires more than just a positive diagnosis. Here’s what you need to know to get help from the Social Security Administration (SSA) for Lou Gehrig’s disease.
Baseline Requirements for Any Disability Claim, Including Lou Gehrig’s Disease
If you have a Lou Gehrig’s disease diagnosis, then yes, your condition is eligible for disability benefits. However, even with such a serious syndrome, applicants still must satisfy the basic criteria for any disability claim. What are these basic requirements?
- An applicant must have a qualifying work history for SSDI. Generally, that means working at least 5 out of the last 10 years to garner enough work credits. And that also means paying Social Security taxes during that corresponding time period. Low-income individuals without a qualifying work history may still be able to get SSI.
- The condition renders the applicant incapable of working. Even with Lou Gehrig’s disease, if the applicant participates in Substantial Gainful Activity (SGA), the SSA will reject the claim. An individual cannot earn more than $1,470/month for 2023. Also, claimants already receiving Social Security retirement benefits cannot receive disability in addition to those funds.
- The applicant can satisfy the SSA’s definition of disability. To gain approval for disability, an individual must meet the SSA’s Blue Book definition for their condition. Lou Gehrig’s disease falls under section 11.00 Neurological – Adult and 11:10 Amyotrophic lateral sclerosis (ALS). This lays out the clinical and laboratory evidence necessary to establish a long-term disability diagnosis per the SSA.
What Medical Evidence Must an Applicant Provide?
As mentioned above, the SSA evaluates Lou Gehrig’s disease claims using the criteria for neurological disorders. In order for an applicant to prove their condition, they must show both medical and non-medical evidence for assessment. The responsibility for getting and paying for these tests falls to the applicant.
Necessary medical evidence for neurological disorders includes:
- Applicant’s medical history
- Examination findings
- Laboratory tests
- Imaging results
There is no singular test that definitively proves a patient has Lou Gehrig’s disease. As a result, diagnosis usually results from a combination of tests and observations. These records must come from a neurologist and not a general practitioner for Social Security to consider automatic CAL approval.
Acceptable records showing a positive diagnosis for Lou Gehrig’s disease include:
- Medical notes from a neurologist documenting symptoms of ALS.
- Examinations — physical and neurological — showing impairments as ALS markers. This may include reflex tests and motor function assessments.
- Laboratory tests including thyroid, blood, and urine tests.
- Cerebral spinal fluid analysis (spinal tap)
- Magnetic Resonance Imaging (MRI)
- Electrophysiological studies, such as nerve conduction velocity (NCV) tests which detect the ability of nerves to send electrical impulses.
- Electromyography (EMG), which examines the electrical activity of muscle fibers.
Basically, an applicant needs to present some combo of the above to the SSA with their application. Then the SSA will evaluate it in line with their Blue Book ALS definition along with the other financial/work criteria.
How Long Does It Take to Get Disability for Lou Gehrig’s Disease?
Previously, it could take a year for SSDI claimants to see any benefits owing to the 5-month waiting period. However, in five months many ALS patients may decline rapidly. This led to ALS receiving the CAL designation along with many other conditions that qualify for expedited claim processing. The sad reality is that many ALS patients may not have time to wait for benefits and need help now.
Applicants with ALS should receive a determination within a couple of weeks owing to the CAL program. If successful, they will also have the immediate option for Medicare coverage. Normally there is a two-year waiting period for Medicare after disability approval, but that doesn’t apply to people with ALS.
However, even with a condition that is on the SSA’s Blue Book CAL list, the disability application process can be confusing. While you can apply for SSA disability benefits online, the most successful applicants have legal representation. In fact, having a disability lawyer file your claim makes you 3x more likely to get benefits right away.
There are about 1,000 people with ALS who apply for disability benefits annually. If you find yourself with an ALS diagnosis, don’t hesitate to be one of them.
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Kimberly Dawn Neumann
Kimberly Dawn Neumann is a multi-published NYC-based magazine and book writer whose work has appeared in a wide variety of publications ranging from Forbes to Cosmopolitan. She graduated summa cum laude from the University of Maryland, College of Journalism. For more, visit: www.KDNeumann.com, Instagram @dancerscribe, and Twitter @KimberlyNeumann