Just Diagnosed with Epilepsy in Newfoundland and Labrador
You're not behind. There's no timeline. Start wherever you're ready and go at your own pace. Everything on this page is free.
Right Now
You're not alone. Whatever you're feeling right now is normal.
An epilepsy diagnosis is scary. Seizures are frightening to witness. But most epilepsy is manageable with medication, and knowledge is your best tool right now.
Who to call today
Epilepsy Canada: 1-877-734-0873
They can help you understand seizure types, medication, and connect you with local support.
Medical note
Make sure you have a seizure action plan. If you don't have one, ask your neurologist at your next appointment. Everyone who cares for your child needs to know what to do during a seizure.
A note about late-night Googling
We've all done it. At 2am you'll find yourself reading something terrifying written in 1997 that doesn't reflect where things are today. If you're spiraling, close the laptop and come back here tomorrow. The information on this page is current, Canadian, and reviewed. You're going to be okay.
When You're Ready — The Important Stuff
These programs have waitlists — some are months long. Applying now means you'll be closer to the front when you need them. None of this is urgent today. But when you have the energy, start here.
Disability Tax Credit (DTC)
Opens the door to $200/month in child benefits, $90,000 in RDSP grants, and several other tax credits.
How to apply:Ask your child's doctor to fill out form T2201. That's it.
Read the full DTC guideNewfoundland and Labrador provincial programs
Direct Home Services
Respite, personal care, and behavioral management supports for families of children with significant disabilities.
Special Child Welfare Allowance
Monthly financial support for foster parents and families caring for children with extraordinary needs.
About waitlists
Apply for everything on this list even if you're not ready to use the services yet. You can always decline when your name comes up, but you can't get back the time you spent not on the list. Think of it as holding your place in line.
The Paperwork
Nobody tells you that a disability diagnosis comes with a mountain of paperwork. Here's what you need and where to keep it. Get a folder (physical or digital). Label it. Everything goes in there.
Documents to gather
- 1Get a copy of the neurologist's diagnostic report
- 2Request EEG and any imaging results
- 3Document seizure types, frequency, and triggers in a seizure diary
- 4Get a letter detailing how epilepsy affects daily functioning
- 5Ask about a seizure action plan for school or work
Always have copies of
- Child's health card
- Social Insurance Number (SIN) — apply if you don't have one
- Birth certificate
- All therapy reports and progress notes
- School records and IEP documents
- Receipts for all medical expenses, therapy, equipment, travel
Track your expenses
Starting today, keep every receipt for anything related to your child's condition: therapy sessions, medications, equipment, mileage to appointments, parking at the hospital. These are claimable on your taxes.
View Tax CalendarBuilding Your Team
Raising a child with Epilepsyisn't something you do alone. Here are the people and organizations who can help.
National organizations
Canada's national epilepsy research and advocacy organization, funding research and providing information and support resources for people living with epilepsy.
Organizations in Newfoundland and Labrador
Registered Canadian charity providing disability-related services. CRA Registration: 118900836RR0001
Registered Canadian charity providing disability-related services in ST.JOHN'S. CRA Registration: 118900836RR0001.
Provincial chapter providing support, education, and advocacy for people with epilepsy in Newfoundland and Labrador.
Recommended therapies
Here are the therapies typically recommended for Epilepsy:
- Neurology follow-up
- Neuropsychology
- Occupational therapy
Specialists to request
- Neurologist (epileptologist for complex cases)
- Neuropsychologist (if cognitive concerns)
- Social worker for program navigation
- Occupational therapist (safety and daily living adaptations)
You are the expert on your child. The doctors are consultants. Don't be afraid to ask questions, disagree, or get a second opinion.
Looking Ahead
You don't need to think about any of this today. Bookmark this section and come back when you're ready — whether that's next month or next year.
RDSP (Registered Disability Savings Plan)
The government will give your child up to $90,000 over their lifetime — but only if you open this account. You need the DTC first. Once approved, open an RDSP even if you can't contribute. The government deposits bonds for low-income families automatically.
RDSP GuideHenson Trust
If your child will receive provincial disability support as an adult, a regular inheritance could disqualify them. A Henson Trust protects the inheritance without affecting benefits. You don't need to set this up now — but when you write your will, make sure your lawyer knows about Henson Trusts.
Education rights in Newfoundland and Labrador
Newfoundland and Labrador uses Individual Support Services Plans (ISSPs) for students with exceptionalities. The ISSP team includes parents, teachers, and specialists. The province funds educational assistants and itinerant teachers for students with special needs.
Your Rights guideTurning 18
Children's services end at age 18 (19 in BC). Adult disability programs have separate applications and often long waitlists. This feels far away. It comes faster than you think. But you don't need to worry about it now — just know it's covered in our guide.
Turning 18 GuideTax planning
Most families of children with disabilities leave $10,000+ per year in unclaimed benefits.
You're Not Alone
Thousands of Canadian families navigate this path every year. Connecting with others who understand can make all the difference.
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