Find out about our Latest Actions.

Health.

We want to improve the interactions between the Down syndrome community and their health care providers. The number one piece of feedback we heard from our members on the topic of healthcare was how judged and unsupported parents and caregivers have felt when seeking prenatal care following a Down syndrome diagnosis, or when seeking medical services for their loved one with Down syndrome. Research exists on best practices for delivering a Down syndrome diagnosis prenatally¹ and postnatally². Research also tells us that better healthcare outcomes and highest quality of life result from respectful and trusting relationships with our doctors³. Despite this information, people with Down syndrome and their families are having to battle the prejudices of medical care providers. This needs to change.

Early Intervention.

We want to improve access to early intervention services. The UN Convention on the Rights of Persons with Disabilities (UNCRPD), of which Canada is a signatory, notes that parties to the convention shall "Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons" and "Provide these health services as close as possible to people’s own communities, including in rural areas". Many families have shared that they do not have adequate access to early intervention services, including Physical and Occupational therapy and Speech Language Pathology. This needs to change.

Education.

We want to support our public school system to provide more inclusive education opportunities to learners with Down syndrome. Up-to-date research tells us that all students benefit from an inclusive education⁴, and organizations such as Down Syndrome International⁵ and Canadian Down Syndrome Society⁶ have published well supported recommendations for the best learning outcomes for students with Down syndrome. The UN Convention on the Rights of Persons with Disabilities (UNCRPD) recognizes "the right of persons with disabilities to education". Despite all of this, we are aware of many cases where students with Down syndrome (and other disabled students) are not being provided an education. This needs to change.

Educator Links.

Connection.

We want to increase the connection between members of our provincial Down syndrome community! Families in the Down syndrome community are the real experts, and we need to learn from one another. Too many families feel lost and unsupported, especially during transition periods; at diagnosis, when seeking early intervention therapies, when entering the elementary school system, in the transition to high school and then in the transition to adulthood. This needs to change.