What does it mean to have control over your own life?
Who do you turn to when making big decisions?
For alot of people, decision-making is not something they do alone. They ask friends and family for advice, discuss options, and consider different perspectives. But too often, people with disabilities are left out of decisions about their own lives—not because they can’t decide, but because outdated systems and attitudes still get in the way.
This evening, self-advocate Barb Goode and Rebecca Pauls, Executive Director of PLAN, spoke to Master of Social Work students at UBC Okanagan about supported decision-making, self-advocacy, and the critical role of personal support networks. The conversation made one thing clear: decision-making is a right, and everyone deserves support that respects their voice.
People With Disabilities Are Leading the Way
Barb Goode is a lifelong self-advocate who has spent decades fighting for decision-making rights. She played a key role in shaping Representation Agreements, a legal tool that allows people to choose who supports them in making decisions, rather than having decisions made for them.
She shared personal experiences about times when her voice was ignored—including in one instance not being told about her own important health diagnosis. Instead of accepting this, Barb took action and has worked to change the system for herself and others.
Her advocacy was also key in the Eve Decision, a Supreme Court ruling that protected the reproductive rights of people with disabilities.
Barb’s leadership is a reminder that people with disabilities are the experts in their own lives.
Decision-Making Is a Right, Not a Privilege
During the discussion, Barb and Rebecca highlighted the difference between supported decision-making and substitute decision-making.
✅ Supported Decision-Making: Respecting Rights
– The person chooses who supports them.
– Decisions are made together, based on the person’s wishes.
Example: Representation Agreements, where people with disabilities appoint trusted people to help with decisions while keeping full control of their rights.
❌ Substitute Decision-Making: Taking Control Away
– The person loses legal decision-making rights.
– Someone else, like a family member, professional, or government agency, makes decisions for them.
Example: Committeeship, where a court appoints someone else to take over all decisions, sometimes without the person’s consent.
The problem with committeeship is that it assumes a person cannot make decisions, rather than recognizing that everyone benefits from support. Self-advocates in BC have fought hard to challenge these outdated systems and create better options.
Relationships Matter: Building Personal Support Networks
Many people assume decision-making is just about laws and paperwork. But Barb and Rebecca emphasized that the real foundation of good decision-making is relationships.
At PLAN, people with disabilites and families build and nurture their Personal Support Networks, groups of trusted people who:
– Respect the person’s choices.
– Offer guidance without taking over.
– Help navigate complex systems while keeping the person in control.
They have shown that having strong relationships can be the best safeguard against losing decision-making rights. When people are surrounded by a network that supports them, they are less likely to be isolated or have decisions made for them.
A Call to Action: What Needs to Change?
This conversation was more than sharing stories—it was a call to action. Barb and Rebecca urged future social workers to commit to ethical, values-based, and rights-focused decision-making support. Here’s what they pledged:
💡 Listen to the people who are most impacted. No one should assume what’s best for someone else. Decision-making support should come from the person’s voice, not someone else’s opinion.
💡 Challenge ableism. Too often, people assume that disabilities mean a person can’t make decisions. The truth is, everyone benefits from support—with or without a disability.
💡 Prioritize relationships. No one should have to navigate big life decisions alone. Families, friends, and allies must step up and show up to ensure self-advocates have the support they need, on their own terms.
Final Words from Barb Goode
Barb left the students with a powerful message:
“Everyone deserves the chance to make choices about their own life.”
This is not just an idea—it is a movement. People with disabilities and their families and networks in BC have led the fight for decision-making rights, and their leadership continues to drive change.
At PLAN, we believe that true inclusion means ensuring that everyone has the support they need to make decisions—without losing control of their own lives.