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:
- The Americans with Disabilities Act website provides general information about the act and a Guide to Disability Rights Laws
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.