March 21 marks World Down Syndrome Day and the Canadian Down Syndrome Society (CDSS) is launching a national initiative called It Was Never Ok: Forward Not Backward.
It urges Canadians to take action against barriers that impact people with Down syndrome.
The society is targeting government cutbacks in essential services for people with Down syndrome and their families through a petition that’s demanding equal access to education, healthcare, employment and recreational activities.
The goal of the campaign is to ensure a better future for Canadians with Down syndrome.
“World Down Syndrome Day for us, it’s a day of celebration,” said Curtis Slater, executive director of The PREP Society.
“It’s a day to bring awareness to the world around understanding what Down syndrome is but also understanding what people with Down syndrome contribute and what they give back to the community and what they’re capable of doing.”
Slater says the PREP Society provides services and supports for children and teens with Down syndrome from birth to 18 years of age.
“We actually focus more on what our kids are doing outside of these four walls,” he said.
“So we do have an early childhood services program for our younger kids but after that, from K to 12 they come on site to learn literacy skills, speech, we have OT and physio and behavior programs for them to learn those critical skills to be successful out in the community.”
Slater knows the challenges parents face first had because his 13-year-old son Jake has Down syndrome.
“A lot of our families are really struggling with education right now where they’re not getting the support in the classroom,” he said.
“Sizes are getting bigger and more complex and teachers are really struggling with how to give personalized, individualized support to all of the children in their classrooms and a lot of our kids are falling through the cracks.”
Slater says families face government funding shortfalls on a regular basis and have to constantly fight for early childhood programs that are key developmental years for their children.
“That support does seem to be deteriorating,” he said.
“We have families right now that have access to funding (through) Family Supports for Children With Disabilities, it’s a great program and we’ve got families that have been approved for funding through this program, they’ve been told they can get some therapeutic early intervention supports for their child but they need to wait to get assigned a caseworker and they’ve now been waiting two or three years.”
Slater says Jake is an active teen with a lot of potential ahead of him and he says children with Down syndrome just need some extra support to help them be successful.
“Like any parent who has a child, whether it’s a child with a disability or not, you’re always wondering what is my child’s life going to be like, when you have a child with a disability, that question just becomes amplified,” he said.
“We’re not receiving the services and supports that we need (for our kids) to live full and active and inclusive lives in the community right now and we just need that extra support.”
