The Down Syndrome Victoria (DSV) community came together on Thursday 20 March with representatives from government at Parliament House to celebrate and acknowledge World Down Syndrome Day with a morning tea, hosted by the Honourable Lizzie Blandthorn, Minister for Disability.
The theme of World Down Syndrome Day this year is “We call on all governments to improve our support systems”. In my opinion people with Down syndrome make the world a more diverse and positive place; our governments need to understand this and ensure we are supported within workplaces, schools and in the community at large. In line with the state disability plan, the Hon. Lizzie Blandthorn thanked the DSV Advisory Network for providing our input, recognising the importance of celebrating World Down Syndrome Day to learn and share together, to make our community inclusive and accessible for everyone. (You can read the thoughts of the rest of our Advisory Network on the 2025 theme too.)
Jenny from DSV did an amazing job as the MC for the morning’s proceedings, stating that she hoped to raise awareness and inspire action from the morning tea.
Liana Borg spoke about her son Harry, who she found out had Down syndrome four hours after he was born. Her journey so far has been a mix of feelings, including uncertainty and fear, which she mentioned were all consuming. The first year with Harry was difficult, financial support through Centrelink was met with resistance as she was told ‘she wasn’t doing any more than someone with a regular newborn’. Liana shared that Sonia from the DSV Family Support service was invaluable in providing home visits, helping to navigate the NDIS and offering to be just a phone call away.
From a mother’s heart of raising someone with Down syndrome, Liana’s words were very touching. She hoped for her son to have a sense of community and belonging as he grows up and noted that Harry was the best thing that had ever happened to her and her family – Harry is ‘pure light and magic … radiating joy’ – and she hopes he has the same opportunities as his peers throughout life, and feels included, loved and respected.
Then we heard from Sarah, a 12-year-old girl with Down syndrome, and her mother Bronwen who described Sarah as a ‘resilient, passionate young lady participating in many activities, with a great sense of humour and passion for life’.
Bronwen spoke about the importance of the Education Support Service (ESS) offered by DSV, headed up by Paula and Ro, providing invaluable resources and support for Sarah and her family as she navigated the education system. Without the DSV’s ESS, and constant advocacy from her family, Sarah’s education and life would be different. It’s worth noting that Sarah was originally put into the category of ADHD and Autism for support at school and not specifically for Down syndrome, prior to the aid of the ESS. Sarah finished her presentation by thanking the DSV and the ESS for ‘investing in my future’.
Matt, the chairperson of the DSV Advisory Network, spoke on his experience growing up with Down syndrome and advocates for everyone he interacts with to ‘get to know the person behind the disability’. Matt called for respect and support from the government and asked for people with Down syndrome to have their values, positivity, impact and potential seen.
Lastly, DSV CEO Daniel Payne spoke about the challenges faced with government support and funding. He mentioned that despite the amazing programs and broad range of support that the DSV offer for all life ages, the organisation has a shortfall in funding every year. This can lead to reduced supports or facing financial deficit and he asked for all levels of government to work together and acknowledge the need for reform to maintain and improve the supports offered to those with Down syndrome.
The morning tea was instrumental in bringing together the Down syndrome community with parliamentary representatives, allowing those with Down syndrome, and those living alongside them, to share their stories. The follow-up from here is to call for action and a guarantee of financial support and backing from the Victorian government within the disability sector.
Colby Hickey
DSV Advisory Network
