Epilepsy is a neurological condition that affects 3 million adults and 470,000 children¹ in the United States. People with epilepsy have recurrent and unprovoked seizures due to abnormal electrical activity in the brain.
Epilepsy is a lifelong condition that can negatively impact the quality of life of somebody living with it. For some people, their ability to work certain jobs, or work at all, can be impaired.
Having epilepsy is associated² with a higher unemployment rate and being fired or considered unfit for work. In one study, just over half³ of epileptics were unemployed, and 63% had never received any college education.
This may be because newly diagnosed patients lose independence due to being unable to drive, and they may have issues finding insurance and, thus, employment. In total, 32% of adults with epilepsy are unable to work, and 53% of adults with uncontrolled seizures live in low-income households that earn less than USD $25,000 per year.
Because of this, it’s important that these people have access to financial support to meet the costs of daily living. The benefits available and the requirements to qualify to differ from country to country. Here is what you can expect in the United States.
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Some people with epilepsy can manage their condition well with medications, allowing them to live a relatively normal life. These individuals choose not to identify themselves as having a disability.
Despite this, the United States Social Security Administration (SSA)⁴ considers epilepsy a neurological disability when specific criteria are met. This criterion includes regular occurring seizures over a few months that cannot be controlled with medication or when epilepsy causes impairment in daily life.
In the United States, the SSA is responsible for administering social security programs that provide benefits to people with disabilities (such as epilepsy).
SSA defines disability as “the inability to engage in any substantial, gainful activity by reason of a medically-determinable physical or mental impairment(s), which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months”.
The key requirement is that a person must have a disability that limits their ability to work for more than one year.
The two programs that allow someone with epilepsy to access disability benefits are the following:
1. Social Security Disability Insurance⁵ (SSDI)
A person is eligible for SSDI if they have worked long enough and have paid social security taxes.
2. Supplemental Security Income⁶ (SSI)
SSI is designed for people who have not worked and have a low income.
If someone has a work-related seizure and is injured while on the job, they may be able to apply for workers’ compensation. It is possible to receive SSDI and workers’ compensation at the same time.
The SSA’s Blue Book is a guide for treating clinicians that explains the SSA disability process and provides a "Listing of Impairments" that clinicians can use to identify obviously disabled applicants who don't require the full evaluation process because their medical conditions meet the criteria of sufficient severity. It outlines the current requirements for epileptic seizures to qualify for disability benefits.
Generally, if an applicant meets the criteria for the medical diagnosis and findings on the Blue Book, and if the listed impairment has lasted or is expected to last at least 12 months or result in death, the applicant will meet the medical criteria for disability.
The two types of seizures listed in the Blue Book are generalized tonic-clonic seizures and dyscognitive seizures. These are generally considered to be the most disabling types of epileptic seizures.
In addition, before someone with these epileptic seizures can get SSI or SSDI, they need to meet other criteria — this is because epilepsy doesn’t affect everyone in the same way. Tonic-clonic or dyscognitive seizure symptoms can range from mild and well-controlled to severe and uncontrolled.
However, if epilepsy fails to meet requirements for severity based upon the Blue Book criteria, the applicant may still meet disability criteria if the functional limitations of the epilepsy are equal in severity and duration to the requirements in the Blue Book listing.
Generalized tonic-clonic seizures occur throughout the brain and involve:
Impaired awareness or complete loss of consciousness
A “tonic” phase with stiffening and tensing of the muscles
A “clonic” phase accompanied by convulsions and jerking of the muscles
To qualify for disability, these tonic-clonic seizures need to:
Occur at least once a month
Occur for at least three months in a row
Continue, despite adhering to the prescribed treatment (such as anticonvulsant medications) for at least three months
If someone has less frequent tonic-clonic seizures, they may still be eligible for disability benefits if:
The seizures occur at least once a week, every two months
The seizures occur for at least four months in a row
The person doesn’t have a positive response to their prescribed treatment
In these circumstances, when the seizures are less frequent, the patient must experience at least one significant limitation in their daily life. This may include changes to:
Physical functioning, such as balancing, standing, or using their arms and legs
Understanding, remembering, or applying information
Interacting with others
Concentrating, persisting or maintaining pace
Adapting or managing their emotions, behavior, and well-being in a workplace setting
Dyscognitive seizures involve alteration of awareness and consciousness. However, often no convulsions or loss of muscle control occur.
Someone who has a dyscognitive seizure may:
Experience changes in their facial expressions
Experience “lip-smacking,” chewing, or swallowing
Make simple and repetitive movements
In some people, dyscognitive seizures can lead to generalized tonic-clonic seizures.
To qualify for disability, dyscognitive seizures need to:
Occur at least once a week
Occur for at least three months in a row
Continue, despite adhering to the prescribed treatment for at least three months
As for generalized tonic-clonic seizures, someone may still be able to qualify for disability if their dyscognitive seizures are less frequent, as long as they occur:
At least once every two weeks
Occur at least three months in a row
Continue despite the person adhering to the prescribed treatment
The person also must experience one of the significant limitations to their day-to-day life, as described for tonic-clonic seizures.
If someone with epilepsy still doesn’t meet these criteria, they may be able to qualify for disability benefits through the medical-vocational allowance pathway.
This path involves the patient undergoing a thorough review of their medical records and works history to determine what jobs they would be able to carry out with their diagnosis.
If no suitable jobs are available, and the person is unlikely to be able to maintain employment, they’ll likely be eligible for disability benefits.
Children with epilepsy can qualify for disability benefits even though they don’t work.
In the United States, this is typically SSI.
To be eligible for benefits, the child will likely need to:
Have frequent seizures
Meet the SSA definitions for epilepsy being a disability
Come from a low-income family (be under a threshold for household income and assets)
To have the best chance of being accepted for disability benefits, a patient with epilepsy may need to provide:
Descriptions of all the different types of seizures they experience (It’s best if this comes officially from a medical professional.)
Descriptions of what happens during their seizures and how frequently they occur
Documents on how epilepsy negatively affects their ability to work and maintain employment
Progress notes about the treatments they have tried and how they haven’t stopped seizures from occurring
Proof of an epilepsy diagnosis
Proof of neurological examinations and scans that they have had
When a health professional supports a patient wishing to apply for disability benefits, they may refer to the “Green Book,”⁷ also known as the Consultative Examination guide. This can help them understand the processes involved in conducting an examination and writing a report for someone they believe is eligible for disability.
A person with epilepsy may find it helpful to speak to an attorney if they have any personal questions, need legal advice on applying for disability benefits, or are unsatisfied with the outcome they received from their application.
Epilepsy is a potentially disabling condition that can negatively impact someone’s quality of life. People with epilepsy may be eligible for disability benefits if their seizures are severe, frequent, don’t respond to anti-seizure medications, and significantly impair their day-to-day functioning.
If you have epilepsy and are looking into what disability benefits could be available for you, a good place to start is by speaking with your doctor so you can collate the evidence that’s required.
In the United States, epilepsy is considered a disability and is listed in the SSA’s Blue Book. However, an individual with epilepsy may not identify as having a disability.
The benefits that someone with epilepsy can receive vary from country to country. A person with epilepsy may be eligible for SSDI or SSI in the United States. These disability benefits help a patient pay for the daily cost of living expenses, such as utilities, food and drink, and housing.
A diagnosis of epilepsy alone is not enough to get SSI. Someone with epilepsy must demonstrate that they experience generalized tonic-clonic or dyscognitive seizures frequently — or less frequently if those are in addition to significantly impaired daily functioning. Also, patients need to prove that medication or other treatments have failed to work.
Another key requirement for getting SSI, regardless of the type of disability, is living in a low-income household and not having worked previously.
It’s not always obvious to know someone has epilepsy until they have a seizure. Because of this, epilepsy is considered by some to be an invisible or hidden disability.
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Disability evaluation under social security | Social Security Administration
Disability benefits | Social Security Administration
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Workers' compensation, social security disability insurance, and the offset: A fact sheet | Social Security Administration
Program operations manual system (POMS) | Social Security Administration
Living with epilepsy | Epilepsy Foundation
Can you get disability for epilepsy? | Disability Secrets
Getting disability benefits for a child with epilepsy | Disability Secrets
How to qualify for social security disability benefits with epilepsy | Epilepsy Foundation
Epilepsy and seizure | Cannon Disability Law