Keith Irving, Liberal MLA for Kings South is tabling a bill today titled the Down Syndrome Act, also known as Harvey’s Law, which will ensure that Nova Scotian families have access to the resources and information they need to support their family members with down syndrome. The bill will also set March 21st every year in Nova Scotia as Down Syndrome Day.
The inspiration for this bill stems from the experiences of Sarah Thompson, Irving’s constituency assistant, who felt her family was left in the dark after learning while pregnant with her son, Harvey, that he had Down syndrome.
“My husband and I were told by multiple medical professionals throughout our prenatal journey that our unborn son would be a burden, a burden on us and a burden on society,” says Thompson. “Our son was devalued based on his extra chromosome without any information or resource book given to our family. We had nothing in hand when we were given our NIPT (Non-invasive prenatal testing) results that confirmed our son had Down syndrome.”
Unfortunately, their experience is not unique. Many parents of children with Down syndrome were told the same things and had the same conversations with doctors and other health care professionals. Some parents feel left behind and unsupported through a combination of what feels like prejudice against people with disabilities in the healthcare system, as well as a general lack of access to resources and current information for those who are raising and supporting children and adults with Down syndrome.
The goal of this bill is to ensure that these families – who do incredibly fulfilling, but also challenging and life-changing work – feel supported, valued, and informed.
“This bill will ensure appropriate consultations will be had with the Down syndrome community and up-to-date information and resources about Down syndrome will be shared with families and our medical professionals,” says Irving. “Valuing all members of our society, embracing each other’s differences and uniqueness, and providing up to-date, balanced information and resources about marginalized communities in our population is vital to creating a more inclusive Nova Scotia.”