Getting Disability Benefits for Narcolepsy

If your narcolepsy significantly affects your productivity at work, you may be able to get disability benefits.

Narcolepsy is a sleep disorder caused by a problem with the nervous system. Narcolepsy sufferers experience extreme drowsiness during the day, usually every three to four hours. Narcoleptics can fall asleep at any time, making the illness unpredictable and dangerous. Medications and scheduled naps may reduce the symptoms of narcolepsy, but there is no cure. After a brief period of sleep, a narcoleptic usually awakes feeling refreshed.

Narcoleptics also experience sleep paralysis where they are unable to move their body while waking, and may experience visual and audio hallucinations. Some narcoleptics also experience cataplexy during exercise, or with high emotion. Cataplexy is a sudden loss of muscle tone that can result in weakness and lack of muscle control.

Can I Get Disability for My Narcolepsy?

Narcolepsy is not a condition that can automatically qualify for benefits if it matches a Social Security impairment listing—there is no listing for narcolepsy. But it's possible your symptoms could be similar enough to those caused by frequent dyscognitive seizures, in which case your condition might be considered equivalent to epilepsy, which does have a listing (listing 11.02). For more information, see Nolo's article on meeting the disability listing for epilepsy, which was updated in late 2016.

If you don't try to "equal" the epilepsy listing, the Social Security Administration (SSA) will look to whether you are able to perform your past work despite your narcolepsy. If the SSA believes you should be able to perform your past work, your claim will be denied. But if the SSA believes that your narcolepsy prevents you from doing your past work (say you used to operate heavy machinery), the SSA will then determine whether there is other work in the U.S. that you're able to perform. To decide this, the SSA will look at your age, education, past work experience, and the work limitations associated with your narcolepsy.

To prove that your narcolepsy causes work limitations, you should provide the SSA with a residual functional capacity (RFC) assessment from your treating physician. An RFC is a detailed report on how your narcolepsy affects your ability to perform work-related activities. A well written and well supported RFC is necessary to win your claim for disability based on narcolepsy. Even though the SSA will accept medial evidence from any licensed physicians who treats you, it will give more weight to a doctor who specializes in narcolepsy. Therefore, you should ask your neurologist to fill out an RFC form. (Learn more about the role that RFCs play in the medical eligibility determination.)

What Should My RFC for Narcolepsy Say?

Your RFC must explain in detail how your narcolepsy prevents you from working. For example, you may need to take frequent and unscheduled breaks throughout the day because of your narcolepsy. And because the symptoms of narcolepsy may be mitigated by scheduled naps, your employer would need to provide you with a place to sleep at regularly scheduled intervals. Most employers are unwilling to provide this type of accommodation. Also, the SSA will approve disability claims where an RFC establishes that the applicant's impairment would result in a 20% decrease in productivity; therefore, because the frequent need for naps and unscheduled breaks would severely impact your productivity, it is unlikely that you could engage in full time work.

Your neurologist should also explain in your RFC how your narcolepsy affects your ability to walk, sit, stand, push, pull, lift, and carry. For example, if you suffer from cataplexy as a result of your narcolepsy, it may be particular dangerous for you to engage in any strenuous activity. This would further limit your ability to perform many jobs. Also, because narcolepsy causes extreme drowsiness, you likely would be prevented from any jobs that required you to climb ladders, drive heavy machinery, or engage in any type of work where safety is at issue.

If you take medication to treat your narcolepsy, you should document any side effects with your doctor and to the SSA. Your doctor should then report on your RFC how your narcolepsy medication impacts your ability to focus, complete tasks, and follow directions.

If the SSA decides that based on your age, education, past work experience and the limitations outlined in your RFC that there is no work you can do, your claim should be approved.

What Kind of Medical Evidence Do I Need?

An RFC is only as good as the medical evidence that supports it. Therefore, it is important that you or your doctor provide the SSA with as much medical evidence as possible to support your diagnosis of, treatment for, and symptoms of narcolepsy. You should provide the SSA with the results of any sleep studies, EEGs, and genetic tests performed by your treating physicians. Also, you should provide copies of any sleep journals that you have kept to document your sleep patterns. Medication lists should be provided along with a description of any side effects you experience. You should also request copies of your doctor's notes from your appointments for treatment and your diagnosis of your narcolepsy. It will speed up your claim if you can submit these to the SSA yourself, along with an RFC form from your doctor.

Working When You Apply for Benefits

When you apply for disability, the Social Security Administration (SSA) will determine whether you are working above the "substantial gainful activity" (SGA) level. For 2018, the SGA amount is $1,180. That means if you earn $1,180 or more a month, the SSA will find that you are capable of doing substantial gainful activity (work), and your claim will be denied. However, if you are working below the SGA level (say you can only work 12 hours per week because of your disability), you can still qualify for benefits.

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