Building a Community for Manitobans with Down Syndrome and their Families
Val’s son Tim leans against a staircase railing with his arms crossed, eyes closed with a smile.
Until the 1990s, Manitoba lacked an organization that supported individuals with Down Syndrome and their families. Manitoba Down Syndrome Society (MDSS) was established in 1991 to fill a need for Manitobans with Down syndrome.
MDSS was created by a group of parents with a vision to make sure that individuals with Down syndrome and their networks would have access to supports and services specific to their needs. MDSS services individuals, families, professionals, educators and the public. They want to increase public awareness of the abilities of individuals with Down syndrome. So they joined forces with Manitoba Possible’s Self-Help Clearinghouse program to reach as many Manitobans as possible.
Still, common misconceptions and assumptions about Down syndrome exist. These misconceptions create barriers to full contribution and participation in society.
As a self-help organization, prospective clients come to MDSS through a friend who might be a member or familiar with MDSS, or through the website which has a robust resource section for both families and new parents.
Building a Community of Support and Hope
Val Surbey, current President of MDSS, helped organize a small single-day conference for families of children with Down Syndrome at the Health Sciences Centre in 1991, called Parent to Parent. The support she found there inspired her and others to form a committee which became MDSS.
A group of people smile, standing close together and looking at something off camera.
“I wish that people would not make the common assumptions about individuals with Down Syndrome. They need to know that they are human like anyone else, with human feelings, desires, and goals. And they are not necessarily always happy or lovable.”
When they aren’t busting misconceptions, MDSS welcomes new parents through their Visiting Parents program or Baby Love events. The reassurance that families are not alone is important and helps to build a community of support and hope.
For individuals with Down syndrome, MDSS hosts social clubs. Two Saturday evenings a month between September and June, staff and volunteers sing karaoke, shoot hoops, play board games, make arts and crafts, or even go bowling. The most important rule is “no parents allowed!” During the pandemic, the Social Club went online. Even though the participants missed seeing each other in person, meeting via Zoom allowed them to keep in touch with their friends.
When thinking about how Manitobans can help end barriers for individuals with Down syndrome, Val wants people to understand that folks with Down syndrome want to be part of society and not separate from it. Val encourages those who want to take their participation to another level to volunteer or join the board. MDSS is always looking for passionate and understanding people to join the team.
“Our most urgent need is to reach more families who are not aware of our existence, particularly those families who may have an older member with Down syndrome who could benefit from our resources.”
Quick Facts
One in every 781 babies born in Canada has Down syndrome.
Life expectancy for people with Down syndrome has increased dramatically in recent decades—from 25 years in 1983 to 60 years or more today. (source: https://www.canadahelps.org/en/giving-life/connecting-with-charities/10-facts-you-may-not-know-about-down-syndrome/)
March 21st is World Down Syndrome Day since it is the 21st day of the 3rd month. It was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome (Trisomy 21).