Planification de l’avenir
Que se passera-t-il quand je ne serai plus là ? C’est la question qui empêche tous les parents d’enfants handicapés de dormir. La planification de l’avenir implique des dispositions légales, financières et pratiques pour garantir que votre enfant sera pris en charge.
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.
Plus de soutien familial
Soins de répit
Soulagement temporaire pour les aidants principaux. La plupart des provinces financent les soins de répit — la plupart des familles l’ignorent.
Soutien aux frères et sœurs
Les frères et sœurs de personnes handicapées sont souvent les membres les plus négligés de la famille.
Programmes de soutien aux parents
Connectez-vous avec d’autres parents qui comprennent. Réseaux provinciaux, soutien spécifique aux pères et ressources pour les couples.
Équipement et appareils
Bibliothèques de prêt gratuites, programmes provinciaux d’appareils d’assistance et sources de financement pour l’équipement.
Camps et loisirs
Camps d’été, sports adaptés et programmes de loisirs tout au long de l’année à travers le Canada.
Programmes de compagnonnage
Programmes bénévoles offrant des liens sociaux et de l’amitié aux personnes handicapées.
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