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Modernizing The Ontario Medical System: It’s Time For Accurate Information About Down Syndrome

For Canadian Down Syndrome Week 2020, we encourage all Canadians and in particular the citizens of Ontario to take notice of the introduction of Bill 225 in the Ontario Legislature on November 2. The proposed Harvey and Gurvir’s Law (Provision of Information Respecting Down Syndrome) would right a longstanding wrong, which is inconsistent, non-existent, or even misleading information provided to expecting parents by medical professionals.

One need only look to the LiveWorkPlay community for many examples of people with Down syndrome leading full lives as contributing citizens. This Bill is about ensuring that doctors are required to have up to date information that is both accurate and balanced, and has been developed with the inclusion of the Down syndrome community.

“Harvey and Gurvir’s Law is for all future mothers and parents in Ontario that experience a pre-natal diagnosis of Down syndrome. This bill will ensure that these families are supported in their decisions with ministry-approved information about the diagnosis,” said the Bill’s sponsor, MPP Sara Singh (Brampton Centre).

Discrimination often begins with the prenatal diagnoses of Down syndrome, when families are provided outdated, incorrect, or biased information based on antiquated models of disability.

“My family went through a horrific prenatal Down syndrome diagnosis journey and we felt we were alone. We need to embrace difference and this bill will provide the most important information and resources for parents. No other family in Ontario should have to experience what we went through,” said Sarah Valiquette-Thompson, co-founder of Perfectly Me, an organization that provides positive outcomes and stories of children with Down syndrome to help other families.

Discrimination faced by persons with Down syndrome continues to persist in the province of Ontario and impacts how families receive services in the health care system. This impacts how families understand the life expectancy, life outcomes, cognitive or physical abilities, as well as psychosocial outcomes of persons with Down syndrome.

“This bill will help end the discrimination facing all future mothers and parents in Ontario with pre-natal diagnosis of Down syndrome by ensuring medical professionals are given Ministry-approved information about Down syndrome,” said Singh.

Many advocates have been championing these changes for decades. Check out this video by the Canadian Down Syndrome Society from 2017 (caution: there’s some serious swear words in this video, but the point is, the only truly bad word is “sorry” watch the video and you’ll understand). Congratulations to MPP Singh for bringing this Bill forward and we will be following the process closely as it takes the next steps towards becoming a law in Ontario, which would set an example and a precedent for other jurisdictions across Canada and the world.