Navigating Adulthood with Severe Epilepsy: A Caregiver’s Guide to Transition

If you’re reading this, you’re probably a parent or caregiver of a child with severe epilepsy—the kind that doesn’t just disrupt life with seizures but shapes every part of it. Maybe your child has a Developmental and Epileptic Encephalopathy (DEE), a condition where frequent, treatment-resistant seizures affect brain development, leading to delays or regression. Even if epilepsy surgery has helped, seizures may still affect learning, independence, and daily life.

You’re not just managing seizures. You’re navigating a lifetime of care—making medical, educational, legal, and financial decisions that will shape your child’s future. 

And let’s be honest: the system doesn’t make this easy.

• Schools don’t always prepare the child—or the family—for transition.
• Pediatric providers may not discuss the shift to adult medical care.
• At 18, critical services can disappear overnight—a crisis many families call “falling off the cliff.”

You Are Not Alone

Planning for a child who will always need care can feel overwhelming. Questions like:

• What happens when they age out of pediatric healthcare?
• How can I ensure financial stability?
• Who will care for them when I’m gone?

These are tough but necessary conversations—and you don’t have to figure them out alone. Resources, checklists, and a community of parents are here to help.

Parents as Case Managers: The Ongoing Role of Advocacy

Parents are not just caregivers; they become lifelong case managers. Unlike pediatric care, where teams coordinate services, the adult system is fragmented. Families must proactively ensure their child can access medical care, benefits, and housing.

As a parent, you take on many roles:

• Medical Manager – Tracking specialists, medications, and insurance battles.
• Education Advocate – Ensuring IEPs and school supports meet your child’s needs.
• Care Coordinator – Managing therapies, home care, and daily routines.
• Legal & Financial Planner – Handling benefits, guardianship, and long-term care plans.

Unfortunately, schools and doctors rarely prepare families for what’s next. That’s why it often falls on parents to ensure their children’s needs are met at every stage.

Let’s talk about how to plan ahead.

Avoiding the “Cliff” at Age 18: Planning for Adulthood

Don’t assume schools or doctors will guide you through the transition. Many families find that school teams focus on the present rather than preparing for what’s next. Parents must be the ones to drive transition planning early. 

Turning 18 can feel like a crisis. Without planning, young adults with disabilities may lose access to:

• IEP services, which end at graduation or age 21 (depending on your state).
• Pediatric doctors, many of whom won’t see adult patients.
• Medicaid waivers & adult services, which may require reapplying with long waitlists.
• Legal and medical decision-making support, without guardianship or alternatives in place.

“Think of transition as another phase—like moving from elementary to middle school—but with higher stakes. The earlier you plan, the smoother it will be.” – Dale Todd, parent and Lennox Gastaut Foundation Board Member

What You Can Do Now to Prepare

• Start early – Begin discussions with doctors and schools by age 12-14.
• Apply for benefits before 18 – SSI, Medicaid, and Medicaid waivers take time to process.
• Get on waitlists – Adult services often have long delays, so apply as soon as possible.
• Explore legal decision-making options – Key considerations include guardianship, supported decision-making, and power of attorney.
• Look into housing & day programs – Options include living at home, supported living, or residential programs.

“It’s just as hard to imagine our child’s life without us as it is to imagine our life without them. These are painful but necessary conversations. Taking small, proactive steps now can provide peace of mind for the future.” – Kristine Hone, parent and CASK Gene Foundation Founder & CEO

Key Areas to Focus On

Legal & Decision-Making

Many families assume their role as decision-makers will continue past 18, but that’s not the case. If you don’t have guardianship or power of attorney, hospitals and government agencies may not allow you to make medical or financial decisions on your child’s behalf. Start planning at least 1-2 years before they turn 18 to avoid delays.

At 18, your child is legally considered an adult—even if they can’t make decisions on their own. Planning ahead will help you maintain the ability to make important decisions on their behalf.

Options include:

• Full guardianship – Court-appointed decision-making for health, finances, and legal matters.
• Supported decision-making – Helps your child make choices while keeping some independence.
• Power of attorney – Allows you to handle specific legal or financial tasks.

Start early—court delays can be long, and continuity of care is key.

“Having copies of guardianship or POA documents easily accessible—on your phone, in your car, in a medical folder—is crucial. You never know when you’ll need them in an emergency.” – Holly Paauwe, parent and Curriculum Manager & Community Liaison for the Indiana Complex Care Coordination Collaborative

Financial & Benefits Planning

• Apply for Supplemental Security Income (SSI) at 18—this often qualifies your child for Medicaid.
• Set up a Special Needs Trust & ABLE account to protect assets while preserving benefits.
• Apply for Medicaid Waivers, which can cover in-home care, day programs, and supported employment.

Healthcare & Medical Transition

For many young adults, transition means taking charge of their own healthcare. But for children with complex epilepsy, parents often stay in the driver’s seat. As your child becomes an adult, their healthcare needs won’t change—but their doctors and services might. A smooth transition from pediatric to adult care can help ensure they continue getting the proper treatment and support. (Goselink et al., 2022)

Parents are responsible for:

• Keeping track of doctors, therapies, and medications.
• Managing insurance approvals and appeals to prevent coverage gaps.
• Organizing medical records and benefits paperwork to avoid delays in care.

What to Do for a Smooth Healthcare Transition

• Start your child’s transition of care early. Many pediatric specialists won’t see adult patients, so ask for referrals well before your child turns 18.
• Find doctors who understand complex epilepsy. Few adult providers have experience with DEE or medication-resistant epilepsy.
• Ensure all providers stay connected. Keeping care coordinated can be challenging if your child sees multiple specialists (neurology, psychiatry, therapy, dietary therapy).
• Go beyond a simple handoff—establish relationships with new providers before pediatric care ends.
• Continue therapies. If speech, occupational, or physical therapy is helping, make sure it doesn’t stop. Some insurance plans require reapproval, so check early.
• Prepare a medical summary. A simple one-page document with seizure history, medications, and emergency contacts can help new doctors quickly understand your child’s needs.

“Not all adult providers are familiar with complex epilepsy, and many refuse to treat nonverbal patients or those with severe disabilities. Families need to find providers who understand their child’s condition before the transition occurs.” – Dale Todd, parent and Lennox Gastaut Foundation Board Member

Seizure Action Plans & Emergency Care

• Update your child’s Seizure Action Plan. Share it widely. Give copies to anyone involved in their care—doctors, therapists, caregivers, and family members.
• Make sure it clearly explains what to do during a seizure, when to use rescue medication, and when to call 911.
• Describe co-occurring conditions (e.g., autism, sleep disorders, behavioral challenges) and their impact on health.
• Watch for other health concerns. Seizures aren’t the only challenge—keep an eye on behavior changes, sleep issues, or medication side effects that may affect their well-being.

Re-Evaluating Treatments: What’s Working & What’s Not?

Transition is a critical time to reassess treatment strategies—what’s working and what’s not—and whether to revisit previously dismissed options (Andrade et al., 2017). If your child still has seizures despite years of treatment, it may be time to take a fresh look at their diagnosis and care plan.

Questions to ask your child’s doctor:

• Could a missed diagnosis explain why treatments haven’t worked?
• Are there newer tests (MRI, EEG, genetic screening) that might provide better answers?
• Would a second opinion help us explore new options?

Even if earlier tests didn’t provide clear answers, new medical advances might. A reevaluation—whether in a pediatric or adult epilepsy center—could lead to better treatment options.

Treatment Options to Consider

• Surgery is not a last resort; it can be a proactive, life-extending intervention. Too often, children with DEEs remain in a cycle of medication failure without surgical evaluation.
• Vagus Nerve Stimulation (VNS) can improve long-term health. While it may not stop seizures, VNS has been shown to reduce the 10-year mortality risk by 35% in medication-resistant epilepsy.
• New testing may lead to better treatments. Advances in genetic testing may reveal the cause of your child’s epilepsy, opening the door to new medications or targeted therapies.
• Emerging therapies—including gene therapy, novel medications, and advanced neuromodulation techniques—could change epilepsy care. It’s always worth asking, “What’s next?”

Medical Transition Is a System Problem—Not a Parenting Failure

Many families struggle because there isn’t a clear transition system for complex epilepsy care. Parents often fill the gap, ensuring their child doesn’t lose medical care, Medicaid, or therapy services. By planning ahead and staying persistent, you can help ensure they continue receiving the best possible care.

“Consider a Med-Peds provider who is trained in both pediatric and adult care. They can provide continuity when transitioning to adult medicine.” – Holly Paauwe, parent and Curriculum Manager & Community Liaison for the Indiana Complex Care Coordination Collaborative

Why Diagnosis Matters

A confirmed diagnosis can make a big difference in accessing the right services and benefits. Neurodevelopmental disorders (NDDs), including DEE, autism, and intellectual disability, are lifelong conditions that affect brain development.

They may impact:

• Thinking & Learning – Memory, problem-solving, and focus.
• Speech & Communication – Understanding and using language.
• Movement & Coordination – Strength, balance, and fine motor skills.
• Social & Emotional Skills – Interaction with others and self-regulation.

With a clear diagnosis, your child may qualify for:

• IEPs, therapy approvals, and benefits—schools and insurers need clear documentation.
• Disability support (Medicaid waivers, home health, respite care)—a diagnosis helps unlock funding.
• Adult services (SSI, guardianship, housing, long-term care)—proving lifelong needs is crucial.

Advocacy Tip: When requesting services, highlight worst-case scenarios to show why long-term support is needed. At the same time, emphasize how early intervention and support can help your child reach their full potential.

Using the right language can make the difference between approval and denial of services.

It’s a Marathon, Not a Sprint

One step, one document, one phone call at a time. Break the transition into manageable steps to take small, proactive actions instead of feeling overwhelmed. 

You are already your child’s expert. You’ve learned the medical system, the education system, and the legal system. You’ve got this.

• Reach out for support.
• Find your community.
• You don’t have to walk this road alone.

We’re here to support you every step of the way.

“This journey isn’t easy, but at the end of the day, don’t forget to enjoy life with your child. I’ve come to accept the fact that this is the way it’s going to be but we are going to have as much fun as we can because you never know how much time we have.” –Dale Todd, parent and Lennox Gastaut Foundation Board Member

Resources to Help You Plan

📌 The Rare C.A.R.E. binder: A comprehensive tool to organize medical records, IEPs, guardianship paperwork, benefit applications and renewal deadlines, and more. VIPrareCARE.com was made possible through UCB funding and partnership to support families like yours.

The Rare C.A.R.E. binder includes a “Letter of Intent” for future caregivers. Many parents call their Letter of Intent their “If I die” guide—the one document that ensures caregivers, providers, and legal guardians know exactly what their child needs.

📌 Transition to Adulthood/Life Stage Checklist: A step-by-step guide to navigating major life transitions, securing services, and advocating for your child.

📌 Transition Roadmap for Youth with Neurological Conditions: This self-paced companion course includes over ten hours of training modules covering all aspects of transition. In this series, you will find the steps you need to take to build your child’s education transition plan, the transition to adult healthcare, future planning, decision-making, and financial support, among other topics.

📌 Growing Together: Navigating the Life Stage Checklist: This webinar, co-hosted by the Angelman Syndrome Foundation, DEE-P Connections, Pediatric Epilepsy Surgery Alliance, and Rare Epilepsy Network, walks you through the Transition to Adulthood/Life Stage Checklist, outlining key milestones and practical steps for navigating medical, educational, legal, and financial transitions. It ends with a panel of parents sharing their lived experiences, offering insights, strategies, and encouragement for families supporting children with severe epilepsy into adulthood.