Strengthening Down Syndrome Advocacy Across Canada
The Ds Collaborative is a network of organizations and self-advocates, united by a common goal – to share, support, and impact the lives of those with Down syndrome and their families. Our objectives are to foster collaboration, facilitate resource-sharing, and create a collective voice that will have a greater impact, working together to transform the landscape for individuals with Down syndrome.
Federally Funded by Employment and Social Development Canada
2025 Down Syndrome Community Survey
Turning Insights Into Action
Individuals with Down syndrome, caregivers, and professional service provicers all participated in the Down syndrome community survey conducted by the national Ds Collaborative in April and May of 2025.
- Dual Diagnosis Is Common. 41% of respondents reported a dual diagnosis, such as Autism spectrum disorder or Down syndrome regression disorder.
- Caregivers Are Doing It All. Most caregivers report managing care, advocacy, and planning with little formal support
- Employment Gaps Persist. Only 21% of individuals with Down syndrome are currently employed.
- Providers Need Better Training. Healthcare providers lack training in Down syndrome-specific care.
The responses and suggestions collected are essential pieces to a roadmap towards more effective programs, advocacy, and supports.
Why a Ds Collaborative?
Unity in Diversity
The Ds Collaborative will recognize the power of collective action. We want to unite people with diverse skills, backgrounds, and experiences so that we can create a more inclusive and supportive community. A key component will be including self-advocates to help guide our work.
Resource Sharing
A priority will be sharing resources to better understand the needs of
groups across the country. Whether it’s information, expertise, or tools, we want to ensure that everyone in our community has access to the resources they need to thrive.
Networking
Building connections and fostering relationships is at the heart of the Ds Collaborative. We will build a platform for networking, allowing you to connect with organizations that share your passion for promoting the well-being of individuals with
Down syndrome.
What Can You Expect If You Join?
Collaboration Opportunities
The Ds Collaborative will organize collaborative projects, events, and campaigns, which will include participation from our community.
Networking Platform
The Ds Collaborative will build a digital community to help you connect with others to share skills
and resources.
FAQ
What do you mean by Ds Collaborative?
CDSS believes in collaborating and sharing with like-minded organizations to create impact. Our goal is to bring together Ds groups and build a community of thought leaders and self-advocates, so we support
each other and work on collective change.
Is my Ds group eligible to participate?
If your organization is a Canadian not-for-profit group with the sole mission and mandate to work with people with Down syndrome, we invite you to be part of the Ds Collaborative.
How do I register my Ds organization?
Send an email to collaborative@cdss.ca expressing your interest and include answers to the following:
- Number of families that your association serves.
- Does your organization have the capacity to commit to quarterly meetings for the Ds
Collaborative for the duration of the 3-year project? - Are you currently part of any other collaborative?
Is there an organizational fee to be involved?
No, through the generous support of ESDC the Ds Collaborative is funded for an initial 3-year project.
Will the work of the Ds Collaborative affect the work of my local organization?
No. The goal of the Ds Collaborative is to increase the capacity of organizations across the country through sharing resources, skill sharing, and joint projects.
Can local care groups or individuals join?
No. Currently, we are in the first phase of the project and we will continue to evaluate how to include more diverse voices and experiences in the Ds Collaborative. This may include other sector agencies,
individuals, and groups.
I have questions about the Ds Collaborative. Who can I speak to?
Please contact Laura LaChance at laural@cdss.ca with your questions.
Funded by the Government of Canada
Please stay tuned to social media for updates on our project and check back here for new information.