Future Planning
"What happens when I can no longer provide care?" This is the question every caregiver of a person with a disability thinks about. Planning now — even imperfectly — is the single most important thing that can be done for a loved one's future.
Legal Checklist
- Will — Must include specific provisions for a disabled family member. A standard will can disqualify them from government benefits. Work with a lawyer who understands disability.
- Henson Trust — A discretionary trust that protects an inheritance without affecting eligibility for ODSP, AISH, or other income-tested benefits. This is critical.
- Power of Attorney — Designates who makes financial and medical decisions if a caregiver is incapacitated.
- Guardianship / Supported Decision-Making — For adults who cannot make decisions independently. Guardianship is the nuclear option; supported decision-making is preferred where possible.
Henson Trust — What Every Family Should Know
A Henson Trust (also called an Absolute Discretionary Trust) is the most important financial tool for disability families in Canada, named after the Henson v. Ontario case.
Without a Henson Trust: If $100,000 is left directly to a disabled family member, they lose ODSP/AISH until the money is spent. The government takes over support after the money is gone.
With a Henson Trust: The money sits in the trust. A chosen trustee distributes funds at their discretion. ODSP/AISH continues uninterrupted. The person receives both.
Cost to set up: $1,500–$5,000 through a lawyer specializing in disability estate planning.
Community Living associations
Future planning workshops and guardianship information by province
Financial Checklist
- RDSP — Open one as soon as possible. Up to $90,000 in lifetime government grants. Grows tax-sheltered.
- Life insurance — Consider a policy that pays into the Henson Trust, not directly to the person with a disability.
- RESP considerations — If the person won't attend post-secondary, RESP funds can be rolled into an RDSP (up to $50,000 lifetime).
- Benefits inventory — Document every benefit currently received so future caregivers know what to maintain.
Letter of Intent
Not a legal document, but potentially the most important thing a caregiver will ever write. It tells future caregivers how to provide care the way the current caregiver would.
- Personal information — full name, birthday, health card, SIN, DTC certificate number
- Daily routine — wake-up, meals, medications, activities, bedtime in detail
- Medical — conditions, medications (dosages, timing), allergies, doctors, pharmacy, emergency protocol
- Communication — how needs, pain, happiness, and frustration are expressed
- Likes and dislikes — favourite foods, music, shows, activities, people
- Relationships — trusted people, important connections
- Behaviour — triggers, de-escalation strategies, what works and what doesn't
- Religious/cultural practices and traditions
- Future wishes — hopes for living situation, relationships, activities
- Financial — benefits received, RDSP details, trust details, bank accounts
- Contacts — every important person with phone numbers and relationship
Microboards
A Microboard is a small non-profit society (usually 5+ people) created for one person with a disability. Board members are people who care about the person — family, friends, community members. The Microboard can hold a Henson Trust, manage RDSP funds, coordinate support services, advocate, and ensure continuity of care. Most established in BC through Vela Canada (velacanada.org), expanding to other provinces.
More Family Support
Respite Care
Temporary relief for primary caregivers. Most provinces fund respite care — most families don't know.
Sibling Support
Siblings of people with disabilities are often the most overlooked members of the family.
Parent Support Programs
Connect with other parents who understand. Provincial networks, dad-specific support, and couples resources.
Equipment & Devices
Free lending libraries, provincial assistive device programs, and funding sources for equipment.
Camps & Recreation
Summer camps, adaptive sports, and year-round recreation programs across Canada.
Companion & Befriending Programs
Volunteer-based programs that provide social connection and friendship for people with disabilities.
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