Getting Disability Benefits for Narcolepsy

Narcolepsy is a nervous system disorder that causes daytime drowsiness and a strong feeling of needing to sleep. Narcolepsy type 1 is a rarer, more severe form of narcolepsy that includes cataplexy (sudden muscle weakness) and is linked to low levels of a brain hormone called hypocretin. People with narcolepsy type 2 don't experience cataplexy and usually exhibit normal levels of hypocretin.

Doctors don't yet have a cure for narcolepsy, but symptoms may be managed by scheduling naps or taking prescription medicine. If you have symptoms of narcolepsy that persist despite treatment and make it difficult for you to work safely, you may qualify for reasonable accommodations from your employer under the Americans With Disabilities Act (ADA) or monthly Social Security benefits (SSDI or SSI) when you can’t work regularly any longer.

Is Narcolepsy a Disability?

Social Security awards disability benefits to people with a medical condition that keeps them from engaging in substantial gainful activity for at least one year. This means needing to show that you either meet the requirements of a listed impairment or that your functional limitations rule out all full-time jobs. (Narcolepsy isn’t a listed condition, so you won’t be able to “meet” a listing, but you may be able to “equal” the requirements of a related listing.)

When you apply for benefits, disability claims examiners will evaluate your narcolepsy treatment for evidence of the following:

• frequency and duration of “sleep attacks”—sudden, intense urges to sleep during the day
• limitations in physical functioning due to cataplexy, and
• limitations in mental functioning due to daytime “somnolence” (fatigue).

People with very intense, frequent sleep attacks may be able to show that their symptoms are equivalent to those of a listed impairment like epilepsy. Others may have a combination of sleep attacks, cataplexy, and fatigue that prevents them from doing any job on a regular basis. In Social Security lingo, this is called “getting a medical-vocational allowance” and is the most common method of qualifying for disability benefits.

How Can You Get Disability for Narcolepsy by Equaling a Listing?

While narcolepsy and epilepsy aren’t really comparable illnesses, Social Security acknowledges that the most severe cases of narcolepsy can share similarities with epileptic seizures. For example, if you’re experiencing frequent sleep attacks, your condition may be found to be medically equal to having "dyscognitive seizures," which is one of the requirements of listing 11.02 for epilepsy.

Dyscognitive seizures are characterized by an altered consciousness involving staring blankly or repeating simple actions or phrases. If your sleep attacks occur at a frequency and severity comparable to a dyscognitive seizure, you could equal the epilepsy listing if your medical records contain evidence of the following:

• sleep attacks that are similar to dyscognitive seizures and occur at least once a week for three consecutive months, or
• sleep attacks that are similar to dyscognitive seizures and occur at least once every other week for three consecutive months that cause a "marked" limitation in a cognitive domain (understanding information, interacting with others, maintaining focus, and behavioral self-control).

For more information on getting benefits for sleep attacks resembling dyscognitive seizures, see our article on disability for epilepsy.

How Can You Get Disability for Narcolepsy Through a Medical-Vocational Allowance?

Even if Social Security determines that your narcolepsy doesn't equal the epilepsy listing, that doesn’t necessarily mean your claim will be denied. The agency will then review your medical evidence, function report, and third-party statements to assess your residual functional capacity (RFC). Your RFC is a set of restrictions on what you can and can’t do at work. People with narcolepsy will typically have an RFC with the following restrictions:

• no driving or operating heavy machinery
• no climbing ladders, ropes, or stairs, and
• no work around unprotected heights.

Social Security will look at the types of jobs you’ve done in the past and compare the demands of your past work with your current RFC to see if you could still do them today. Depending on your age, education, and past work experience, you may be able to qualify for benefits simply by ruling out your past jobs under the agency’s “grid rules.”

If the grid rules don’t apply to you (or you’re under the age of 50), Social Security will need to determine whether any other jobs exist that you could safely do despite the restrictions in your RFC. For example, if your narcolepsy causes you to need frequent naps or unscheduled breaks, you might not be productive enough to maintain any type of full-time employment.

What Evidence of Narcolepsy Should You Give to Social Security?

Your medical records are the foundation of your disability case. Without them, Social Security doesn’t know what limitations to include in your RFC (and therefore which jobs you aren’t able to perform). With that in mind, you should make sure the agency has the following evidence:

• progress notes showing that you’re consistently seeking and following your doctors’ recommended treatment
• medical source statements from your regular doctors explaining how long each sleep attack usually lasts and the number of sleep attacks you're having
• medication lists showing any prescription drugs you’re taking as well as any side effects you experience, and
• results from any tests done, including ECGs, EEGs, polysomnograms (sleep studies), and the multiple sleep latency test (MSLT).

Social Security will, with your permission, request records from any medical providers you’ve seen for conditions related to your disability application. If you change doctors, are hospitalized, or begin treatment for a new disorder, let the agency know.

What Are the Chances of Getting Disability for Narcolepsy?

It depends on the strength of your medical records. Narcolepsy isn’t one of the diagnoses on the compassionate allowance list that qualifies for expedited approval, nor is it one of the Blue Book impairments that can qualify for disability based only on medical criteria. And in order to prove that you can’t do any jobs, you’ll likely need extensive documentation that your narcolepsy prevents you from doing even the easiest, sit-down jobs, which can be a difficult task. You’ll have an easier time qualifying for benefits if you have additional medical conditions along with narcolepsy than you would for narcolepsy alone.

What Are the Disability Benefit Amounts for Narcolepsy?

Social Security doesn't award benefits based on the type of medical condition you have, so it won’t matter if you qualify for disability due to narcolepsy or another disorder. Rather, the amount you'll receive if you're approved depends on whether you qualify for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI). You can learn more about these programs—and calculate your estimated benefit amount— in our article on SSDI and SSI monthly check amounts.

What If Social Security Says I Don’t Qualify?

Few people are awarded disability benefits on their first try, but you can appeal the denial—preferably with help from an experienced disability attorney or advocate. A lawyer can help you gather medical evidence, handle communications with Social Security, and represent you at a disability hearing.

If the cost of a lawyer is a concern (as it is for many people with disabilities), many communities have legal aid or other services that provide assistance and resources for people applying for disability benefits. Disability attorneys work on contingency—meaning they get paid only if you win—and many offer free consultations, so it doesn’t hurt to ask around to find a lawyer you like.