Just Diagnosed with ALS (Amyotrophic Lateral Sclerosis) in Northwest Territories
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.
This is devastating news. There's no way to make this easier. But there is support, there is community, and there are things that can be done right now to help.
Who to call today
ALS Society of Canada: 1-800-267-4257
Call today. They will assign you a support coordinator who handles everything from equipment to paperwork. You don't have to do this alone.
Medical note
Get connected to an ALS clinic (multidisciplinary team) as soon as possible. ALS qualifies for expedited DTC processing — apply for benefits immediately.
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
Northwest Territories provincial programs
Income Assistance — Persons with Disabilities
Enhanced income assistance for NWT residents with disabilities, including higher shelter and personal allowances.
Extended Health Benefits
Coverage for medical travel, prescription drugs, dental, and vision care for eligible residents with disabilities.
Community Counselling Program
Mental health and addictions services available in communities across the territory.
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 neurologist's full diagnostic report
- 2Request documentation of the type (limb-onset, bulbar-onset) and rate of progression
- 3Ask for an urgent referral to an ALS clinic (multidisciplinary team)
- 4Document current functional abilities — this changes rapidly
- 5Apply for benefits immediately — ALS qualifies for expedited DTC processing
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 ALSisn't something you do alone. Here are the people and organizations who can help.
National organizations
A national organization funding ALS research, advocating for people living with ALS, and providing support through provincial chapters and societies.
Organizations in Northwest Territories
Nonprofit organization supporting individuals and families affected by ALS in Yellowknife, Northwest Territories. Provides employment support, job training.
Recommended therapies
Here are the therapies typically recommended for ALS:
- Physiotherapy
- Occupational therapy
- Speech-language pathology
- Respiratory therapy
Specialists to request
- Neurologist at an ALS clinic
- Respiratory therapist (breathing support is critical)
- Speech-language pathologist (for swallowing and communication devices)
- Physiotherapist and occupational therapist
- Social worker for urgent benefits navigation
- Palliative care team (early involvement is recommended)
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 Northwest Territories
NWT uses Individual Education Plans for students with special needs. Due to remote communities, some services may require medical travel to Yellowknife or southern Canada. The territory provides additional funding for inclusive schooling.
Your Rights 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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