Disability- and Caregiver-Led Boards (No Allies Voting)

This document defines the formal governance structure for Canada Disability United (CDU), ensuring that all decision-making authority remains with people with disabilities and unpaid caregivers. Allies and professionals may participate in advisory capacities only.

1. Principle

All governance power belongs to people directly affected by disability—people with disabilities and unpaid family caregivers. Allies, professionals, or service providers may support or advise but do not hold voting power or officer positions.

2. Bylaw Amendment: Composition and Eligibility

1. Composition

Each Provincial Board shall include a minimum of five (5) voting members, all of whom must be persons with disabilities and/or unpaid family caregivers providing direct care or advocacy.

2. Exclusion of Non-Lived-Experience Members

Individuals who are not persons with disabilities or unpaid caregivers may not serve as voting directors. Such individuals may be invited as non-voting advisors or committee resource members at the discretion of the board.

3. Representation Requirements

Each Provincial Board shall be composed of at least sixty percent (60%) persons with lived experience of disability, including persons with intellectual or developmental disabilities, to ensure that decision-making power remains in the hands of those directly affected.

The remaining members may be unpaid family caregivers. Allies, service providers, and professionals may only serve in non-voting advisory roles.

Each Provincial Board must include:

• At least one (1) member who identifies as a person with an intellectual or developmental disability; as part of the 60 percent makeup of the board
• At least one (1) unpaid family caregiver; and
• At least one (1) Indigenous or rural member whenever possible.

4. Advisors and Technical Support

Professionals (lawyers, accountants, accessibility experts, etc.) may attend meetings to provide technical or administrative assistance but have no vote and may not chair meetings.

3. National–Provincial Relationship

• National Board Responsibilities:
  • – Set national strategy and ensure representation from each Provincial Board.
  • – Maintain national compliance, finances, and branding.
  • – Facilitate training and shared policy research.

• Provincial Board Responsibilities:
  • – Develop provincial advocacy priorities.
  • – Collect stories, data, and policy issues from members.
  • – Coordinate with provincial governments and local organizations.
  • – Nominate one (1) director to the National Board.

Each Provincial Board’s nominated representative to the National Board must be a person with lived experience of disability or an unpaid caregiver.

4. Structural Summary

Level	Who Can Vote	Who Can Advise	Purpose
National Board	PWD + unpaid caregivers  from across provinces	Advisors (no vote)	National advocacy, federal liaison
Provincial Boards	PWD + unpaid caregivers	Local service allies  (no vote)	Provincial policy work, member engagement
Committees / Working Groups	As delegated by board	Allies may participate	Research, communications,  outreach

5. Representation Principle

Canada Disability United is governed entirely by people with disabilities and unpaid caregivers. Allies and professionals are welcome as partners, educators, and collaborators—but not as decision-makers. Our movement is one of self-determination, not supervision.