Epilepsy Talk

Epilepsy Bill Of Rights | October 16, 2023

The Bill of Rights for People Living with Epilepsy was created for people living with epilepsy by people living with epilepsy and was spearheaded by The Epilepsy Foundation in conjunction with many concerned contributors.

If you don’t know about these rights, please read on…

The Bill of Rights for People Living with Epilepsy is designed to inform people affected by epilepsy about issues related to healthcare, health insurance coverage, life at school and life in the workplace. People with epilepsy are encouraged to be their own advocates in managing their healthcare.  However, any and all treatment decisions must be made together with their healthcare team. Those who are well informed will gain the greatest benefits.

1. People with epilepsy have the right to be treated fairly and with respect.

2. People living with epilepsy have the right to receive comprehensive, understandable information about epilepsy and its treatment.

3. People living with epilepsy have the right and responsibility to be active members of their healthcare team.

4. People living with epilepsy have the right to know and understand all of the treatment options that are available to them.

5. Special populations of people with epilepsy (e.g., children, adolescents, women of child-bearing age, people with developmental disabilities, the elderly, etc.) have the right to ask about treatment and information appropriate to their specific needs.

6. People living with epilepsy have the right to understand all of the options and legal protections for accessing healthcare benefit coverage available to them.

7. People with epilepsy have the right to know that healthcare providers will hold personal and medical information confidential.

8. Children with epilepsy may have the right to receive special education and related services at school; parents have the right to advocate for such services.

9. People with epilepsy have the right to know that there are federal and state laws that may provide them with protections in the workplace.

10. People with epilepsy have the right to access help and support that will assist them in making informed decisions about living with epilepsy.

The Bill of Rights for People Living with Epilepsy is not a legal document. These 10 rights are aspirational goals that the epilepsy community is striving to achieve. None of the information should be construed as medical or legal advice.  Recipients of this document should not make decisions or take actions based on the information contained in this document without obtaining appropriate medical or legal counsel from a qualified, licensed professional.

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5 Comments »

  1. Charlotte Smith's avatar

    Kudos to all the people who worked on the Bill of Rights for people with Epilepsy. You did a fine job of putting it all together for us.

    Liked by 1 person

    Comment by Charlotte Smith — October 16, 2023 @ 5:03 PM

  2. Roy Anthony's avatar

    Commendations, as well. Thanks to all their efforts. When was this originally published. Last week, year, etc.?

    Liked by 1 person

    Comment by Roy Anthony — October 16, 2023 @ 5:43 PM

    • Phylis Feiner Johnson's avatar

      Roy, I think it was originally published three years ago. That’s when I found it. Which doesn’t mean it wasn’t published much earlier than that.

      Like

      Comment by Phylis Feiner Johnson — October 16, 2023 @ 6:07 PM

  3. HoDo's avatar

    I wish we had the right to be seen as persons rather than as a (potentially threatening) condition. This list is great! Thanks.

    Liked by 1 person

    Comment by HoDo — October 16, 2023 @ 5:49 PM

  4. Doreen Mack's avatar

    You have always been consistent and a warrior for the cause. Thank You for all your efforts!

    Liked by 1 person

    Comment by Doreen Mack — October 17, 2023 @ 8:51 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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