Just Diagnosed with Spina Bifida / Hydrocephalus in Nunavut
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.
Your baby has spina bifida. Take a breath. Medical care for spina bifida has come a long way, and children born today have more possibilities than ever.
Who to call today
Spina Bifida & Hydrocephalus Association of Canada: 1-800-565-9488
They'll connect you with families in your area who've walked this path.
Medical note
If your child has hydrocephalus and a shunt was placed, learn the signs of shunt malfunction: headache, vomiting, drowsiness, irritability. This is a medical emergency — go to ER immediately if you see these signs.
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 guideNunavut provincial programs
Non-Insured Health Benefits (NIHB)
Federal program covering medical travel, dental, vision, and mental health services for Inuit and First Nations residents.
Official websiteMedical Travel Program
Coverage for medical travel to access specialists and services not available in the territory (often to Ottawa or Winnipeg).
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 neurosurgeon's and pediatrician's reports
- 2Request documentation of the type (myelomeningocele, meningocele, etc.) and level
- 3Obtain records of any shunt placement for hydrocephalus
- 4Document all current functional abilities and equipment needs
- 5Keep a comprehensive medical history binder (multiple specialists will be involved)
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 Spina Bifidaisn't something you do alone. Here are the people and organizations who can help.
National organizations
Formerly the Spina Bifida and Hydrocephalus Association of Ontario, rebranded in 2017. Provides awareness, education, support, and research for Canadians affected by hydrocephalus and spina bifida.
Recommended therapies
Here are the therapies typically recommended for Spina Bifida:
- Physiotherapy
- Occupational therapy
- Urology follow-up
Specialists to request
- Pediatric neurosurgeon (shunt monitoring)
- Urologist (bladder and bowel management)
- Orthopedic surgeon
- Physiotherapist
- Occupational therapist
- Developmental pediatrician (for cognitive screening)
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 Nunavut
Nunavut uses Individual Education Plans. Due to extremely remote locations, many specialist services require medical travel. The territory is working to expand telehealth and remote assessment options. School-based support may be limited in smaller communities.
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 GuideHome modifications and assistive devices
Provincial programs can fund home modifications, wheelchairs, communication devices, and other assistive technology.
Tax 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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Know of a service we should list?
This directory grows because people in the community help us find what we've missed. Let us know about organizations, programs, or services across Canada.