July 2025

CEO Update

Welcome to DSA’s July e-news!

This month, we’re excited to share three new videos created with members of our community. They focus on employment, rights and health. It’s so important to reflect the voices of people with Down syndrome in everything we do, so a huge thank you to everyone who took part. We hope you enjoy watching them!

This week, we’re also looking forward to hearing from members of our community at the National Centre of Excellence in Intellectual Disability Health’s first national conference in Sydney. It’s a great opportunity to connect, learn and share ideas. We’ll post updates on social media and include highlights in next month’s newsletter.

In other events news, planning is well underway for the 2025 Scrapheap Adventure Ride, which will finish in Lake Cargelligo in Central NSW this October. Learn more and get involved.

We’ve also selected last year’s Scrapheap Adventure Ride Grant recipients. These fantastic projects will support people with Down syndrome living in regional, rural and remote areas. Stay tuned for more details.

Finally, there have been some key changes in government responsibilities following the recent election. The main change is that Disability, excluding employment and the support pension, now falls under the Department of Health, Ageing and Disability.

Thanks for staying connected. We hope you enjoy this month’s updates.

Sincerely

Darryl Steff

CEO, Down Syndrome Australia

Advocacy

DSA Advocacy in Action

The DSA Consortium has recently taken part in two important consultations with the Australian Government.

We made a written submission to the Department of Social Services about supported employment. The submission was endorsed by a number of other Disability Representative Organisations.

We believe every person with intellectual disability should have the support they need to explore open, inclusive employment. They should be able to work in a job that’s right for them and be paid fairly.

Read our submission.

As part of our submission, members of Down Syndrome Victoria’s Advisory Network spoke on video about what employment means to them and what needs to change. A big thank you everyone who took part and supported us.

Click the image below to watch the video:

We also made a submission to the Anti-Bullying Rapid Review, endorsed by Inclusion Australia.

Many students with disability still don’t get the support they need to attend a local, mainstream school. We support a consistent national approach to bullying and action to stop abuse, violence and exclusion in education.

This includes things like gate-keeping access to schools, unfair discipline and segregation. There must be trained support staff and proper referral pathways when more help is needed.

Community Voices

Goodbye and Welcome to DSAN Members

A huge thank you to Jenny Bowden from Victoria, who recently finished her time with the Down Syndrome Advisory Network (DSAN). Jenny has been a valued member since February 2021. She is passionate about getting people out into the community and giving a voice to people with Down syndrome.

We’re also delighted to welcome Sandon Overton from Tasmania as our newest DSAN member. On joining DSAN, Sandon said:

“I was very excited to have the opportunity to get my first job and to earn some money. I like using technology and enjoy having our meetings online. I am excited about gaining more skills that will help me get another job in the future. Being able to help other people with Down Syndrome to see life is good.”

We look forward to working with Sandon and hearing his voice in the group!

Inside DSAN: Monthly Update with Michael

It’s been another busy month for our DSAN members. This month, Michael from Queensland shares what the group has been working on, including learning about leadership, employment and the importance of Acknowledgement of Country.

Read Michael's update

New Video: Standing Up for Your Rights

We’re excited to share the first video in our new series led by members of the Down Syndrome Advisory Network.

In this video, DSAN members share their tips on how to speak up, get support and stand up for your rights.

Click the image below to watch the video:

Introducing the Supporting My Rights Logo!

Talented artist Melissa Kirkman has been working with our Project Reference Group to design a fantastic new logo for Supporting My Rights.

Melissa chose colours that match the Down Syndrome Australia logo. The final design is bold, bright and full of meaning.

You’ll see this logo on all Supporting My Rights resources, which are coming later this year. It’s a proud symbol of the project and what it stands for.

A big thank you to Melissa for sharing her creativity and working with us on this.

Learn more about Melissa

Health

Our Health Apps Are Now Available on Android!

Great news for Android users! Our Good Health App and Health Record App are now available on Android.

The Good Health App helps people with Down syndrome easily keep track of their health.

The Health Record App lets parents and carers store and manage health information all in one place.

Both apps are free and easy to use.

You can download them now on Google Play and the Apple Store.

Watch the video below to see the apps in action:

Excellence in Practice: Voices for Better Care Podcast

The National Centre of Excellence in Intellectual Disability Health has started a fantastic new podcast for healthcare professionals. It’s all about helping them improve how they care for people with intellectual disability.

Each episode, hosts Ricky Kremer and Raylene Griffiths talk with experts, healthcare workers and people with lived experience. They share real stories and useful advice to help build skills and confidence.

The first episode is now out in two parts.

Part 1 – Challenging Bias in Health Care

Dr Jessica Smith talks about bias in healthcare and how it can affect people with intellectual disability. She shares ways to challenge these biases.

Part 2 – Challenging Bias in Health Care

Rachel Browne tells the story of her son Finlay and how not getting the right care had a tragic impact. This episode shows why healthcare workers need to be aware of bias.

Watch all episodes on YouTube or listen on Spotify, Apple Music and other platforms.

Access the podcast

Research Opportunity: NurtureNextGen

Are you a parent or carer of a child (including adult children) with a genetic neurodevelopmental condition?

Researchers from the University of Technology Sydney want your help. They are running a half-day workshop to design a digital tool for families learning about their child’s genetic diagnosis.

Workshops will be held in Sydney and Melbourne in person, with other sessions online. There will be a mix of small and large groups. Your ideas could help create a useful tool that shares balanced information showing both strengths and possible challenges to support families on their journey.

You are eligible if:

You are a parent or carer of a child with a genetic neurodevelopmental condition
You are over 18
Your child can be any age, including adult children

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Down Syndrome Australia is the national peak organisation for people with Down syndrome and their families. We work closely with the State and Territory Down syndrome associations to provide advocacy, support, and information.

Down Syndrome Australia is proud to receive support from the Australian Government's Information Linkages and Capacity Building (ILC) Grant program, in order to deliver a wide variety of projects to support people with Down syndrome, their family and supporters.

Please get in touch if you have feedback you would like to share with us.

You can reach us via email at info@downsyndrome.org.au

Down Syndrome Australia and its members acknowledge the Traditional Custodians of Country throughout Australia and their connections to land, sea and community. We pay our respect to their elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today.

Down Syndrome Australia, 552 Victoria Street, North Melbourne, VIC, 3051

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