Just Diagnosed with Fetal Alcohol Spectrum Disorder (FASD) in Prince Edward Island
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.
"Can't, not won't." Your child isn't being difficult on purpose. Their brain was affected before birth, and now you know why — which means you can finally get the right support.
Who to call today
Canada's FASD research network can connect you with support in your region.
There's nothing you need to do medically right now that isn't already being handled by your care team.
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 guideFederal benefits
Prince Edward Island provincial programs
Special Needs Children's Program
Early intervention and family support services for children with developmental delays and disabilities.
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 the full multidisciplinary assessment report from the FASD diagnostic clinic
- 2Request documentation of all identified brain domains affected
- 3Ask for the specific diagnosis within the spectrum (FASD with sentinel facial features, FASD without, etc.)
- 4Document all adaptive functioning limitations
- 5Keep records of all support services currently in place
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 FASDisn't something you do alone. Here are the people and organizations who can help.
We don't have specific organizations listed for FASD in Prince Edward Island yet. Try browsing all organizations in Prince Edward Island.
Recommended therapies
Here are the therapies typically recommended for FASD:
- Occupational therapy
- Speech-language pathology
- Psychology (behavioral strategies)
Specialists to request
- FASD diagnostic clinic (multidisciplinary team)
- Developmental pediatrician
- Clinical psychologist for neurocognitive testing
- Occupational therapist for adaptive skills
- Speech-language pathologist
- Social worker for family support coordination
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 Prince Edward Island
PEI uses Individualized Education Plans for students with special needs. The province has a Student Well-being Team approach where interdisciplinary teams support students. Schools must provide reasonable accommodations.
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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