Just Diagnosed with Muscular Dystrophy in Quebec
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 a lot to take in. Muscular dystrophy is a spectrum — outcomes vary enormously depending on the type. Focus on getting connected with a neuromuscular specialist and taking things one step at a time.
Who to call today
Muscular Dystrophy Canada: 1-800-567-2873
They provide equipment loans, financial assistance, and can connect you with families who understand.
Medical note
Ask your neurologist about cardiac and respiratory monitoring — these are important for many types of MD. Getting a baseline now helps track changes over time.
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
Quebec provincial programs
Supplement for Handicapped Children
$236/month (2025)Monthly supplement paid to families of children with disabilities requiring exceptional care.
Official websiteAssistive Technology Program (RAMQ)
Covers cost of assistive devices, wheelchairs, and orthotics through the Regie de l'assurance maladie du Quebec.
Official websiteAbout 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 diagnostic report including genetic test results
- 2Request documentation of the specific type of MD (Duchenne, Becker, myotonic, etc.)
- 3Ask for a functional abilities assessment
- 4Document current mobility and equipment needs
- 5Get a letter outlining expected disease progression and care needs
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 Muscular Dystrophyisn't something you do alone. Here are the people and organizations who can help.
National organizations
A national organization with provincial presence providing research funding, advocacy, equipment loans, and support for people living with neuromuscular disorders.
Recommended therapies
Here are the therapies typically recommended for Muscular Dystrophy:
- Physiotherapy
- Occupational therapy
- Respiratory therapy
Specialists to request
- Neurologist or neuromuscular specialist
- Geneticist for family counseling
- Physiotherapist specializing in neuromuscular conditions
- Respiratory therapist (for types affecting breathing)
- Cardiologist (for types affecting the heart)
- Occupational therapist for equipment and 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 Quebec
Quebec uses Individualized Education Plans (Plans d'intervention) for students with special needs. The Ministry of Education provides grants to school boards for students requiring additional services. Services are available in both French and English school systems.
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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