Community Engagement from Theory to Practice: Co-design and Implementation of Inclusive Language Principles in a Community-based Organization Serving People with Disabilities
Authors: Fulton IV Joseph Hawkins , Armas Alana , Crooks Hayley R. , Tshuma Gift , Whitehead-Lye Karen , Fung W. Francis , Palsis Rambel , Nguyen Tram , Elford Sasha , Moore Barbara , Nelson Michelle LA 
Published: January 2024

Introduction: March of Dimes Canada (MODC) is one of the largest non-profit organizations in Canada that provides programs and support services to people with disabilities. MODC is in the process of transforming all its programming and services using co-design to better meet the needs of people with disabilities. The Empowering Client Voices (ECV) initiative was designed to create a co-designed community engagement framework to center the voices and ideas of people with disabilities in how the organization engages with its community and provides services. This project looks to fill a gap in knowledge of how community-based organizations can move from theory to praxis when using co-design and community engagement.

Methods: The initiative is a three-phase process: (1) internal review of current organization engagement practices; (2) external environmental scan and a rapid review; and (3) two advisory committees to develop the principles for greater community engagement. The purpose of the co-designed community engagement framework is to create actionable principles based on the guidance of our advisory committees and other research tools. Phases 1 and 2 will create foundational themes to be discussed with our advisory committee made of people with disabilities. These themes will help provide initial guideposts for discussions about what community engagement should be within MODC. Language will be the first theme to be explored with the advisory committee to create recommendations and guidelines for better communication and inclusive language across the organization.  

Results: The inclusive language recommendations and guidelines developed by the ECV Advisory Committee will initiate the development of an inclusive language toolkit by the research team.  The inclusive language toolkit will be shared throughout the organization as a template to follow when discussing disability and people with disabilities using language that represents our community in their own words. Before the start of the ECV Initiative, inclusive language guidelines did not exist within the organization requiring the development and implementation of a change-management process at the Micro (MODC staff members) and Meso (Organization) to ensure the guidelines will be adopted across a national community-based organization.

Discussion and Conclusion: This poster presentation will outline the development of the co-designed inclusive language toolkit and change management process for our organization to adopt standardized inclusive language through all forms of community engagement and communication in collaboration with people with disabilities in our communities of operation. International audiences can use our project as a case study of how co-design can inform and drive organizational change. This case study will highlight the implementation factors that were found to be advantageous in a community-based organization, factors that hindered organizational change, and mitigation techniques used to make lasting change across the organization. 

Lessons and Future Research: Future research for the ECV Initiative will continue to implement the additional themes within the ECV community engagement framework with the intention of making the additional toolkits based on co-designed themes and change management knowledge products publicly available to help other community-based organizations improve their own community-engagement practices.