Survey: Advocacy Priorities for Virginians with Epilepsy

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The survey below is designed to gather input from Virginians with epilepsy (and their families) on which advocacy and policy areas matter most to you.

Your feedback will help the Epilepsy Foundation of Virginia (EFVA) identify priorities to focus on when working with state lawmakers and officials. Please take a few minutes to share your experiences and opinions. All responses are anonymous, and your perspective is valuable whether you’re an adult with epilepsy, a parent of a child with epilepsy, or any other member of the community.

Q1. Which of the following best describes you? (Select one)

A person living with epilepsy (diagnosed with a seizure disorder)

A parent or guardian of a minor child with epilepsy

A family member/caregiver of an adult with epilepsy

Other:

Clear selection

Q2. Do you currently reside in Virginia? (Select one)

Yes, I live in Virginia (full-time or most of the year)

No, I live outside Virginia (If not in VA, you can skip the remaining questions unless you have relevant input as a former resident.)

Clear selection

Q3. Overall, how well do you feel the state of Virginia is addressing the needs of people with epilepsy? (Select one)

Excellent – Virginia is doing a great job supporting people with epilepsy

Good – Virginia has made some progress, with a few areas to improve

Fair – Virginia is doing okay, but there are several important gaps

Poor – Virginia is lagging and not adequately addressing the community’s needs

Not sure/No opinion

Clear selection

Q4. Which areas of state-level advocacy or support are the most important to you personally? (Select up to 3 issues that you believe most need attention in Virginia)

Access to affordable healthcare and medications: Ensuring epilepsy treatments are covered by insurance, Medicaid, or other programs, and reducing barriers like onerous insurance requirements (e.g. step therapy/prior authorizations) or high out-of-pocket costs for doctor visits and anti-seizure drugs.

State support for epilepsy services: Increasing Virginia’s investment in epilepsy programs – for instance, creating a state epilepsy advisory committee or funding community services. This could mean state grants for epilepsy education, awareness campaigns, patient navigation, respite care, or support centers, similar to programs in some other states.

Support for students with epilepsy in schools: Enforcing and enhancing “seizure-safe” policies in K-12 education – for example, training teachers/staff in seizure first aid, having seizure action plans and necessary medications at school, appropriate accommodations (504/IEPs), and educating students to foster understanding and inclusion.

Public awareness and anti-stigma education: Increasing public education about epilepsy to dispel myths and stigma. This could involve state-supported campaigns or integrating information about epilepsy and seizure first aid into public health programs, so that employers, teachers, law enforcement, and the general public are more informed and accepting.

SUDEP awareness and prevention: Prioritizing efforts to reduce Sudden Unexpected Death in Epilepsy – for example, educating medical professionals and families about SUDEP, improving data collection and autopsy practices (as with the new Virginia medical examiner training law), and encouraging preventive steps (like night-time monitoring devices, supervision guidelines, etc., when appropriate).

Transportation and driving: Addressing challenges related to driver’s license restrictions and transportation for those who cannot drive. For example, expanding transportation assistance (such as paratransit services or other mobility programs) for individuals who are temporarily or permanently unable to drive due to epilepsy.

Support in the workplace: Promoting employment opportunities and accommodations for people with epilepsy – e.g., educating employers about epilepsy, requiring seizure first-aid posters or trainings at work (as already mandated in VA), protecting employees from discrimination or unjust firing due to seizures or necessary treatments (including use of medical cannabis or flexible scheduling for medical appointments).

First responder and law enforcement training: Improving training for EMS, police, and other first responders to recognize seizures and respond appropriately. This could help avoid misidentification of seizures as criminal behavior and ensure people in seizure emergencies receive proper care and compassion.Transportation and driving: Addressing challenges related to driver’s license restrictions and transportation for those who cannot drive. For example, evaluating if Virginia’s 6-month seizure-free requirement could be modified (or better individualized), and/or expanding transportation assistance (such as paratransit services or other mobility programs) for individuals who are temporarily or permanently unable to drive due to epilepsy.

Other:

Q5. Of the issues you selected above, which one do you feel is the top priority for Virginia to address? (Select only one issue – the most critical to you.)
(If you selected “Other” and it is your top priority, please choose “Other” here as well.)

Access to affordable healthcare and medications

Support for students with epilepsy in schools

Support in the workplace

First responder and law enforcement training

Transportation and driving

State support for epilepsy services

SUDEP awareness and prevention

Public awareness and anti-stigma

Other:

Clear selection

Q6. Please share any specific experiences, concerns, or suggestions you have regarding living with epilepsy in Virginia. (Open-ended – you may describe any particular challenges you’ve faced and what changes you’d like to see. For example, you might discuss difficulties with a school or employer, issues with getting medication, interactions with law enforcement or medical providers, etc.)

You can write as little or as much as you want in this comment box. We welcome personal stories or ideas that might help illustrate why certain issues are important. (Optional question, but your input is very valuable!)

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