Lives of people with Down syndrome celebrated to raise awareness

Down Syndrome Awareness Month activities have been running throughout October, arranged by DSA and associated organisations, to educate the community about the condition.

About one in every 1,100 Australian babies are born with Down syndrome, equating to 290 born every year.

It is caused when a baby has an extra copy of the 21st chromosome in its genetic makeup. Down syndrome is the most commonly occurring chromosomal condition.

Chief Executive Officer of DSA, Dr Ellen Skladzien, says the full scope of the lives of people with Down syndrome is being shared this month.

“Internationally, October is recognised as Down Syndrome Awareness Month and is an opportunity to celebrate the achievements of people with Down syndrome, advocate for the full inclusion of people with Down syndrome, and highlight some of the inequalities people with Down syndrome still face,” she says.

The annual StepUP! #21YourWay awareness and fundraising campaign is in full swing with more than $85,000 already raised to fund the work of local Down syndrome associations in promoting inclusion and supporting families.

Fundraising events and challenges are being held differently in each State and Territory to remain COVID-safe and more information about events near you, or online campaigns to participate in, can be found on the Step Up for Down Syndrome website.

To coincide with the events and advocacy, DSA has released a submission made to the Disability Royal Commission about the shocking lack of support for parents who find out through pregnancy screening that their baby is likely to have Down syndrome.

The submission notes that about nine out of ten Australian pregnancies where the baby is likely to be born with Down syndrome are terminated.

It also includes a recent DSA survey of 320 parents who have a child with Down syndrome under the age of 10.

The survey found half of these parents felt pressure from their healthcare provider to terminate the pregnancy.

When it came to the information the parents were provided after being told their baby was likely to be born with Down syndrome: 

• 42 percent said they were given negative or untrue information about the condition

• 45 percent said they did not receive the appropriate support during pregnancy 

• Almost 70 percent felt the information didn’t give them an understanding of the lived experiences of people with Down syndrome and their families

Bias and stigma from health professionals were also prevalent in the responses to the survey, with parents commenting that “My doctor cried when she told me” and “I was told my child was not really human, she would have a body like a human but nothing inside. I was told she would never be able to show she loved us. But we would love her like a family pet”.

The parents who were able to connect to other families with children with Down syndrome reported finding a more realistic overview of what their life could be like with their child than what health professionals had told them it would be.

“Every family should feel supported to make an informed decision on their own terms, to learn about Down syndrome and intellectual disability, and to have the opportunity to meet people with Down syndrome in their own community,” Dr Skladzien says.

The report also backs several improvements DSA has been advocating for, including:

• Informed consent prior to prenatal screening, as many parents don’t know what screening is for or that having screening is a choice

• Delivery of results using neutral language and factual information, as many parents were informed of screening results in a biased or unfactual way

• Provision of up-to-date and balanced information about Down syndrome, as many parents did not receive the information they need to make an informed choice about the pregnancy

• Referral to peer support services during pregnancy and after birth

• Access to counselling and support services before and after a decision is made about whether to continue the pregnancy or not

• Respect for decision making, as many parents reported being asked multiple times whether they wanted to terminate the pregnancy, even after making the decision to continue

Dr Skladzien says DSA’s survey reflects the discrimination and stigma in the healthcare system which medical professionals have towards people with Down syndrome.

“Families have been traumatized and their memories of pregnancy and the early days with their baby are tainted with thoughts of doctors saying terrible things about what their child would not be able to do or the impact that their baby would have on their family,” she says.

“We urgently need to address the discrimination and stigma in the health care system medical professionals have towards people with Down syndrome. 

“We need to fight to change the way we support families around prenatal screening. We need to create a system where access to balanced and accurate information is the norm, not the exception.”