Whether you were diagnosed in adulthood or have been living with seizures your entire life, managing epilepsy can be hard sometimes. It’s always important to remember that you are just one of the 4.3 million adults who have a history of epilepsy and 2.4 million that have active epilepsy.* Below you’ll find an overview of information about living a full life with epilepsy. However, you are always welcome to contact us to explore your needs in full.
Please note that the following information is offered for informational purposes only. There are no warranties of any kind for quality of service, consistency of time schedules, etc.
It’s true, having active seizures can keep you from driving a car. It can be frustrating, but that doesn’t mean there aren’t ways to get around and live your life. There are plenty of places that are easily accessible by public transportation. DART is inexpensive and convenient. It’s always important to plan out your trip ahead of time to help keep from getting confused on the way. If you are planning a trip, make sure you first visit https://www.google.com/maps to search for public transportation directions. After you type in your destination click on the picture of a bus to get accurate and step-by-step public transportation directions.
By now, you have likely heard about a service similar to taxi’s called UBER or Lyft. To use this service, download the UBER of Lyft “app” through your mobile phone. You will need to set up an account and enter in a credit/debit card to be charged per ride. Enter the destination address and the driver will pick you up from your home. A percentage of the fare paid to the driver is taken by UBER as its fee. You may also be able to split your fare if there are others sharing the ride. As stated by UBER it is not a “transportation company” but merely acts as a dispatcher, it presently is not subject to regulations concerning, for example, liability coverage, accessibility and background checks of its drivers.
Sadly, despite the efforts of patients, doctors, and organizations like the EFDE, epilepsy is often misunderstood. As a result, people with epilepsy sometimes find they are treated differently or unfairly. But remember, you have rights just the same as anyone else. If you have struggled with this, we are here to help. We hope you’ll find the information below helpful, and our staff are here to answer any questions you may have.
Sometimes, epilepsy and health concerns can be so serious that it isn’t a good idea to work. Therefore, the federal government offers financial assistance and health insurance for those who qualify. The first program is Social Security Disability (SSDI) for people with disabilities and/or their “dependents” (family members or survivors) who have worked a certain length of time in the past and paid Social Security Taxes. On the other hand, Supplemental Security Income (SSI) is for people who meet the requirements for having a disability and special income levels. Under this program you may also be able to get Medicare or Medicaid coverage. For a more complete overview of federal benefits, click here or call 215-629-5003.
Individuals with epilepsy often have a hard time finding and keeping a job due to their seizures or an inability to drive. Studies have showed that those with epilepsy have higher rates of unemployment and underemployment than the general population (Smeets et al 2007). There are many different reasons why this may happen. It can be because your seizures happen so often, or are so serious that it’s hard to go to work every day. It can be things like medication, transportation, memory issues, or fear of co-workers not understanding. It’s important to remember that epilepsy is a disability protected under the Americans with Disabilities Act (ADA). That means that you have rights in the workplace. Here are a few things to keep in mind:
- Epilepsy is a disability, even if medications, surgery or other treatments are used to help control seizures.
- An employer may not ask if you if you have epilepsy before they offer the job.
- An employer can ask about you about your qualifications for a job, like whether you have a driver’s license or can work with heavy machinery.
- If you’re applying for a job and share that you have epilepsy, and the potential employer “reasonably believes the applicant will require an accommodation to perform the job because of epilepsy or treatment, the employer may ask if he needs an accommodation and what type.”
- An employer can ask for medical information if they see performance problems that could be caused by epilepsy or they have information that epilepsy may be causing performance issues.
- The EEOC (Equal Employment Opportunity Commission) states that an employer cannot tell other employees (co-workers and other managers) about an employee’s health condition, even if co-workers witness the person having a seizure in the workplace.
Some examples of workplace accommodations might be new work schedules, installing a safety device, or changing some non-essential job duties.
The ADA does not apply to all workplaces. However, where it does apply, the core issue is whether you can perform the “essential functions” of the job. If you need an accommodation, request a meeting with your employer, and have a dialogue with him/her. Maybe there are alternative means of performing your job which will not be “unduly burdensome” on the employer.
It can be hard to stop working or change your career path because of seizures, but having epilepsy doesn’t mean you can’t live a full life. It may take thinking creatively about your future and changing what you used to have in mind. If your seizures are not completely controlled, you may want to look for something closer that you can access with public transportation and is a safe working environment. Or maybe, you can even work from home! The EFDE can help you figure out what you can do to achieve your goals. There are also programs in the area to help you find your best fit.
Source: Smeets VM, van Lierop BA, Vanhoutvin JP, Aldenkamp AP, Nijhuis FJ. Epilepsy and employment: literature review. Epilepsy & Behavior (2007) 10: 354-62.
Far too often we hear stories of people with epilepsy having a seizure in public and their behavior is viewed as disorderly, bizarre, or unlawful. This is very common in cases in complex partial seizures that can be misunderstood by police officers. That’s why we have developed police training materials to educate officers about recognizing seizures, first aid steps and how to help someone with epilepsy. It’s a good idea to wear an emergency medical bracelet or other identification that can prevent an inappropriate arrest. If you are arrested for a seizure-related behavior, you can consult the Jeanne A. Carpenter Epilepsy Legal Defense Fund, created to help people with epilepsy fight discrimination. For a more in-depth look at discrimination law at the state and local level click here.
If you are arrested, let us know the name and contact information of your attorney. We will provide materials regarding epilepsy to your attorney so that he/she will be in a better position to represent you. We will also be able to determine whether the specific police district has been offered training in seizure recognition and first aid.
Family Court matters are usually protracted. Not all attorneys, Masters, and judges are knowledgeable about epilepsy, and may wrongly assume that the parent with epilepsy presents a danger to the children. We will provide materials which may give you more credibility. If, for example, the parent without epilepsy says that it’s too frightening for the children to see you having a seizure, you may be permitted to show our materials on First Aid to bolster your position that education works to eliminate the fear. Once you know what it is, it’s not really scary.
It goes without saying that affordable health insurance is very important for someone with epilepsy in order to continue treatment. With recent changes in the healthcare system it can be confusing what steps you need to take to secure coverage for procedures, specialists or medication. The Affordable Care Act has expanded options for affordable coverage for people with epilepsy. The Epilepsy Foundation of America provides an overview of different programs here.
*Epilepsy. (2014, July 30). Retrieved May 12, 2015, from http://www.cdc.gov/epilepsy/index.html The Epilepsies and Seizures: Hope Through Research. (2015, April 17). Retrieved May 12, 2015, from http://www.ninds.nih.gov/disorders/epilepsy/detail_epilepsy.htm