Meet the Community Health Workers Helping Families Navigate Epilepsy

When a family is dealing with epilepsy, questions often extend well beyond the next doctor's appointment.

Where can they find trustworthy information about seizures? What happens if transportation makes it difficult to attend appointments? Are there resources to help with medication expenses? And where can they turn when epilepsy begins affecting a child's education or an adult's ability to work?

These questions deserve attention, but finding answers can take time and energy. For people already balancing health concerns with the demands of everyday life, navigating multiple support systems may feel like another job.

Community Health Workers help bridge that gap.

Support That Starts With Listening

A Community Health Worker, commonly called a CHW, works with people to identify needs, explore available resources, and develop practical goals.

At Epilepsy Foundation New England, Care Management is designed around the individual rather than a one-size-fits-all checklist. A CHW takes time to learn about the person, including what matters to them, what they enjoy, and which challenges are making life more difficult.

That personal approach is important because two people with epilepsy may need very different kinds of assistance.

One person may be looking for information about seizure first aid. Another may need help identifying transportation options or financial assistance. A parent might be interested in educational resources, while someone else may want to connect with a support group.

The starting point is a conversation about what would be most helpful.

Turning Questions Into Practical Next Steps

Knowing that resources exist and figuring out how to access them are two different things. Care Management can help people move from uncertainty toward a clearer plan.

Depending on individual needs, a Community Health Worker may help with:

• Education and information: Finding epilepsy education and seizure first aid resources.
• Healthcare access: Exploring healthcare and medication resources.
• Transportation and financial concerns: Identifying potential assistance and community programs.
• School and employment: Exploring educational and employment-related resources.
• Connection and belonging: Finding support groups and opportunities to connect with the epilepsy community.
• Local services: Identifying relevant community resources and programs offered by the Epilepsy Foundation New England.

The goal is not to assume what someone needs. It is to work together to identify priorities and explore the options that fit their circumstances.

For a family facing several challenges at once, having help organizing the next steps can make the search for assistance feel more manageable.

Working Alongside Healthcare Teams

Epilepsy Foundation New England primarily provides Care Management through Epilepsy Resource Rooms located in hospitals and across the region outside of the hospital system.

In these settings, Community Health Workers work alongside medical teams to identify people who may benefit from additional support. A CHW may meet with someone during a clinic visit or make contact after an appointment to introduce the program and discuss whether the person is interested.

This creates an opportunity to address concerns that may not fit neatly into a medical appointment but still affect a person's ability to manage life with epilepsy.

Importantly, participation is a choice. A CHW can explain the program and available resources, and individuals can decide whether they would like to take part.

Care Management complements the broader support network around a person. It does not replace medical advice or treatment from qualified healthcare professionals.

You Don't Need to Know Exactly What to Ask For

Reaching out for support can feel difficult when you are not sure which service would help or whether your situation qualifies. The good news is that you do not need to have everything figured out before making contact.

Epilepsy Foundation New England encourages people with epilepsy and their families to connect with a Community Health Worker even when they simply want to learn more about available resources.

And support is not limited to people whose hospitals have an on-site CHW. The foundation provides Care Management services throughout Massachusetts, Maine, New Hampshire, Vermont, and Rhode Island. People can submit a referral form to connect with the team if their hospital does not have a Community Health Worker.

Making Support More Accessible

A diagnosis can bring uncertainty, but finding help should not have to be another source of frustration. Community Health Workers offer a way for individuals and families to discuss their concerns, identify resources, and work toward goals that reflect their own lives.

For anyone managing epilepsy, or supporting a loved one who is, starting a conversation may be a useful first step.

Explore Care Management: Learn more about Epilepsy Foundation New England's program and how to connect with a Community Health Worker.