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Epilepsy Foundation of Greater Cincinnati and Columbus > Services > Advocacy

Advocacy

Too often, the person with epilepsy may feel their rights have been denied. From Federal (ex: Americans with Disabilities Act, federal benefits) and State issues (ex: driving, employment) to individual client issues (ex: school/workplace discrimination), the Epilepsy Foundation of Greater Cincinnati advocates for both children and adults with epilepsy fighting against discrimination. We offer support, if needed, by attending a child’s school IEP (Individualized Educational Program) meetings and by offering training for school staff and students.

Having seizures may make your job hunt more difficult, but not impossible. We offer services in the workplace by communicating with employers and offering training to employers and fellow employees, as well as specialized training for the person with epilepsy who wishes to join the workforce and may need advice and guidance with obstacles (ex: when to disclose to an employer that you have epilepsy). If your epilepsy does reduce your ability to work, you may qualify for Supplemental Security Income (SSI) under the Social Security Administration. This program is designed to help people who have smaller incomes because they are unable to work or can only work a little. The eligibility requirements are complicated, but if you can show the SSA that your epilepsy hurts your ability to work, you may be able to get some assistance. Your best tool in the hunt for insurance or employment is to know your rights, know about your epilepsy, shop around and look into all the options available!

We participate in the Kids Speak Up! Program that takes kids with epilepsy to Washington D.C. annually to meet with their Senators and Representatives and learn early in their lives how to advocate for themselves.

It is important to know your rights as a person with epilepsy and to be an advocate for yourself or your loved one with epilepsy! Be aware of the facts about epilepsy and participate in awareness and advocacy programs. This knowledge will help you search for a job or insurance with confidence.

The Jeanne A. Carpenter Epilepsy Legal Defense Fund has been created to help people with epilepsy fight discrimination and to protect the civil rights of people with epilepsy by promoting education, advocacy and increased access to legal services. If you feel you have faced epilepsy-related discrimination and you want to challenge it, you can contact the Jeanne A. Carpenter Epilepsy Defense Fund at 1-888-886-EPILEPSY.

The Patient Advocate Foundation provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness. (The Patient Advocate Foundation–Pediatric Resources has assembled a comprehensive list of pediatric resources to provide services to parents of patients diagnosed with life-threatening illnesses.)

Every state has its own laws regarding driving with epilepsy. The laws differ in the length of time you must go seizure free before you may obtain a license. Some are 3 months seizure free, some are 6 months and some say you have to have no seizures for a year before you can get a license. Check with your local Department of Motor Vehicles for your state’s laws. (Ohio’s DMV:  http://www.bmv.ohio.gov )

Information regarding the ADAAA

The Americans with Disabilities Amendments Act of 2008 (ADAAA) was enacted on September 25, 2008, and became effective on January 1, 2009. This law made a number of significant changes to the definition of “disability.” Congress directed the US Equal Employment Opportunity Commission (EEOC) to amend its ADA regulation to reflect the changes made by the ADAAA, published in the Federal Register September 23, 2009. Questions and answers to common questions surrounding the ADAAA and how it can affect you can be found in these 2 documents:

Highlights from the Hill – a compressed update of news and views from Washington D.C., on current legislation and issues faced by those affected by epilepsy, published by the Epilepsy Foundation of America. Click for the latest Highlights from the Hill, as well as archived issues.

Being Your Own Health Care Advocate

There are few things more important to families than accessing quality health care. Because of this, parents must learn to advocate on behalf of their child’s health and wellness by proactively working to obtain, participate and monitor their health services. Specifically, regarding treating epilepsy, the goal is to attain the best seizure control with minimal disagreeable side effects.

Taking time to learn about epilepsy and seizure types will help make the most of doctor’s appointments. In addition, use available resources like the Epilepsy Foundation of Central Ohio’s library of books, magazines, pamphlets, and videos. By going on-line, other resources can also be obtained. A good place to start is:

When visiting the doctor, be ready with questions to ask your health care provider. These could include:

  • What type of seizures do I have?
  • What is the cause of my epilepsy?
  • Where do my seizures originate?
  • What are the different treatments for my seizures?
  • What are the average costs of treatment? Are there less costly but effective medications available?
  • What information can you provide me that will best help me to make a treatment decision
  • What can you tell me about the medicine and its possible side effects? What side effects should I report to you?
  • If I don’t notice an improvement, how long should I wait before calling you?
  • Does my medication interfere with anything else I am taking? Is there anything I should avoid?
  • Where can I go to find out more about my particular condition or treatment plan?

Keeping a journal or seizure diary is crucial in the treatment of epilepsy. The Epilepsy Foundation of Central Ohio has seizure diaries available, or you can design your own. Record:

  • Your seizure activity – what time they occurred & how long they lasted
  • Any interferences, such as missed dosages, illnesses, or alcohol intake
  • Any triggers, such as fatigue, flashing lights, dehydration, or stress
  • Side effects to include physical, emotional, cognitive, and sexual

Ask a friend or family member for their observations of you before, during, and after a seizure. If possible, video tape the seizure activity. This is an excellent tool in determining what type of seizures you have and the best medication to prescribe.

You are the center of your health care team. Do a little homework before your visit to maximize the effectiveness of your appointment. Make a list of:

  • Your other health concerns
  • Any prescribed medications you are taking
  • Any over the counter medications, vitamins, and supplements you are taking
  • Any allergies
  • Hospitalizations
  • Anti-epileptic medications your are taking now/strength & dose
  • Anti-epileptic medications you have taken in the past

Additionally, you may want to:

  • Write down questions prior to the appointment. Bring a pen and paper to jot down the answers and to make notes.
  • Prioritize your concerns in case there isn’t enough time to go over your entire list.
  • To help sort out information, bring someone with you to the appointment.
  • Ask for any written information that might be available.
  • Thoroughly read all medical forms and make sure you understand everything before you sign.

After leaving your appointment, if you are confused about what the health care provider told you or you have more questions, please call! There is staff available to help you between appointments. Often a nurse may be able to clarify something you were told in the office but could not understand at the time. Hearing the same information repeated several times and perhaps by someone different may help you understand it better. If you don’t understand what the doctor tells you, ask for clarification or ask the nurse for clarification.