People with epilepsy may experience convulsive or non-convulsive seizures and their seizure episodes may occur while awake or asleep. The seizures themselves are only one aspect of what disables an epileptic however.
Fatigue, aphasia, and other symptoms that precede and usually follow each seizure episode also make it difficult for some epileptics to maintain employment. It may take hours for an epileptic to recover from each seizure and in patients where seizures occur several times per week or even several times a day, the debilitating nature of the illness certainly makes maintaining a job difficult if not impossible.
The non-profit organization CURE reports more than 3 million Americans live with epilepsy and one in 26 Americans will be diagnosed with the condition during their lifetime. For some, epilepsy is controlled by medications. For others though, uncontrolled seizures wreak havoc on all aspects of life, including the ability to work and earn a living. If you suffer from uncontrolled seizures, you may be able to qualify for disability benefits from the Social Security Administration (SSA).
The Financial Costs of Epilepsy
Epilepsy results in ongoing medical expenses but also affects finances in other ways. The disease requires consistent drug therapy, even when medications are not entirely effective in controlling seizures. Diagnostic tests intended to pinpoint the cause and the effects of seizures can be expensive.
The three most common anti-convulsive medications are phenytoin (Dilantin), carbamazepine (Tegretol, Carbatrol), and divalproex sodium (Depakote). According to the National Institute of Health, the average cost per month of one anticonvulsive prescription is around $30.00, and many epileptics must take a combination of drugs, multiple times per day, in an attempt to control seizures. But medication costs are only a drop in the bucket when it comes to what uncontrolled epilepsy actually costs the average patient.
Epilepsy Advocate Magazine reports that frequent ER visits due to uncontrolled seizures result in an average of $35,000 per year in ER bills for an epileptic, and patients admitted to the hospital for seizures pay an average of $1,800 per day for their hospital stay. Epilepsy Advocate Magazine also reports workers who lose time on the job due to uncontrolled seizures face a lifetime earnings loss of between $140,000 and $317,000.
When an epileptic can continue to work, the costs he or she faces due to seizures are still staggering, but the costs of epilepsy are insurmountable for patients that are unable to work at all. Thankfully, individuals that have frequent seizures are often able to qualify for Social Security disability benefits.
Medically Qualifying for Benefits Through the Blue Book Listing
The SSA maintains a manual called the Blue Book that contains disability listings. Convulsive and non-convulsive epilepsy are included in this manual. When you submit your application for benefits, the SSA staff that reviews your claim will compare your medical records and other documentation to the appropriate listing in order to determine if you are eligible for benefits.
To qualify under the Blue Book listing, your epilepsy must be severe and uncontrolled by medications, despite you strictly following your doctor’s treatment orders AND the evidence in your medical records must meet or closely match the listing for the type of epileptic seizures you have.
- For convulsive seizures (listing 11.02), the SSA needs to see that you experience:
- Daytime seizures that cause you to convulse or lose consciousness
- Nighttime seizures that cause severe complications for you during the day, like problems staying awake, thinking clearly, or coordinating your physical movements.
In addition to experiencing seizures that meet this listing, you must also continue to have seizures at least once a month after you’ve been on anti-seizure medication(s) for at least three months.
- For non-convulsive epilepsy (listing 11.03), the SSA must see you experience:
- Seizures that occur during the day or night
- Cause you to experience pronounced issues after each seizure, which may include things like unusual behaviors, trouble thinking, a lack of energy, difficulty staying awake, or other post-seizure symptoms that interrupt daytime activities.
To qualify under this listing, you must not only meet the requirements listed above, but must also continue to experience seizures at least once a week even after taking anti-seizure medication(s) consistently for at least a three-month period.
Understanding the technical and medical language that appears in the Blue Book can be challenging. The book itself is written for medical professionals. Work closely with your doctor to understand the listings and to know whether or not you are likely to meet or closely match one of these listings as well.
Medically Qualifying for SSD through an RFC Analysis
If your epilepsy doesn’t meet or closely match one of the Blue Book listings but still prevents you from working, then you may still be able to qualify for disability benefits. You will need to go through an RFC or residual functional capacity analysis.
This process requires you and your doctor to fill out “functional reports.” Other people, like friends, family, or caregivers, may also be asked to complete a report. These forms give the SSA information on how your illness affects your everyday life and your ability to complete normal, daily tasks.
Be as thorough as possible on these forms and you accurately and honestly explain your physical, mental, and psychological limitations on the functional report forms. Don’t leave any questions blank, as this will only lead to further delays and may even result in the SSA denying you benefits.
RFC report forms provide space for you to include “more information” on your epilepsy. Use this space to describe your daily challenges, your seizures, and any symptoms or side effects you experience. You may additionally want to consult a Social Security attorney or advocate about how to make a compelling argument that your epilepsy disables you even though it doesn’t meet the Blue Book requirements.
If you are only qualified for one form of work that is dangerous with epilepsy, you will have a higher chance of being approved. For example, a 50-year-old roofer would have a very difficult time working with epilepsy due to the risk of falling. If he did not go to college and isn’t qualified for any safer form of work, he could be more likely to be approved than a younger, college-educated applicant with epilepsy.
How to Apply for Benefits with Epilepsy
Epileptics can apply for Social Security disability in one of two ways: online or in person at the local SSA office. If you’re applying online, you should understand that you can only submit an application via the SSA’s website for SSDI or Social Security Disability Insurance, which are benefits available to disabled workers who meet all program requirements.
If you are applying in person at the local office, you can complete your SSDI application and you can also apply for Supplemental Security Income or SSI benefits. SSI is a need-based program with strict income and financial asset limits.
Whether you’re applying for SSI, SSDI, or both, you must ensure you provide the SSA specific details throughout your application. These include accurate information on your employment history, education, medical treatment, and income and other financial data. Gather as many records as you can before you begin your application(s) and be sure to fill out all forms consistently and completely.
The SSA will additionally need contact information for your primary care doctor, any hospitals in which you’ve receive emergency room or in-patient care, and any other healthcare provider you’ve seen. This will allow them to obtain your medical records, which are the key to being approved for benefits.
A cornerstone piece of evidence required is a detailed report from at least one medical doctor describing a seizure he or she personally witnessed. Descriptions of your seizures from you, your family, or friends can also be helpful, but most epileptics that win benefits have a formal report from a doctor documenting the physical and mental affects of their seizures. With any luck, you will be approved quickly and can focus on your health. Before applying, be sure to read our article on tips for applying with epilepsy.