March 2025

CEO update

Welcome to DSA’s March e-news.

We’re delighted to share that the Hon Amanda Rishworth MP has confirmed a funding extension for our information for life, employment and health projects until the end of June 2026. This fantastic news reflects the impact of our work and gives us confidence to continue supporting and empowering our community.

Our recent advocacy efforts have included working closely with the Federal Government—participating in national forums, meeting with key departmental leaders and officials and providing feedback on NDIS processes to make them more inclusive.

We’re also proud to support the new Our Health Still Counts campaign. Led by the Council for Intellectual Disability and Inclusion Australia, the campaign calls for action to improve healthcare for people with intellectual disability.

Our Board Chair and parent-advocate, Rebecca Kelly, and her son Ryan, feature in the campaign. Watch their story by clicking on the image below.

This is a still image from the Our Health Still Counts video. It is an image of Rebecca Kelly and her son, Ryan

Learn more about the campaign

We’ve also been busy behind the scenes on our own advocacy campaign, launching next week—stay tuned!

Finally, registrations are now open for the Scrapheap Adventure Ride 2025. This exciting event challenges motorcycle enthusiasts to buy a bike for under $1000, fix it up, and hit the road for an adventure through the Aussie outback—all while raising funds and awareness for people with Down syndrome.

This year’s destination is Lake Cargelligo, NSW, where riders and their families will gather for a weekend of fun at the Lake Cargelligo Caravan Park, 3-5 October 2025.

Learn more and register

Sincerely

Darryl Steff

CEO, Down Syndrome Australia

Advocacy

This is a photo of a mother playing with her young son with Down syndrome

DSA Advocacy in Action

It’s been another busy month in advocacy! While NDIS reforms continue, we’re also working to make mainstream supports and programs more inclusive for people with Down syndrome.

This month, we provided a submission to Jobs and Skills Australia on their next workplan. We called for:

Better-targeted employment programs and support to address the real barriers to employment
Meaningful co-design of programs and research with people with Down syndrome and intellectual disability

We also consulted on updates to the Disability Standards for Education, particularly the inclusion of early childhood education and care (ECEC). We support the update but highlighted the need for stronger support for ECEC providers to meet their obligations—so the disability community isn’t left to challenge discrimination alone.

Additionally, we took part in a round-table on palliative care and young onset dementia, working with the Young People in Nursing Homes Alliance and the Department of Social Services to build a better care system for people with early onset dementia.

If you have any questions or feedback, email us at advocacy@downsyndrome.org.au.

Projects

This is a photo of Eoin and Jerry, two men with Down syndrome, smiling at the camera. They work for Down syndrome Australia.

Introducing Our Digital Champions!

We’re excited to launch an initiative that empowers people with intellectual disability to teach digital skills across Australia.

Our first 10 Digital Champions have been selected and will soon train disability support workers, community groups and others, helping people with intellectual disability feel safe and confident online.

In partnership with Good Things Foundation Australia, we’re working to create a more inclusive digital world. Watch our video below to learn more.

This is a cover image for the new Digital Champions video

This is a photo of two adult women with Down syndrome reading

Helping the NDIA Communicate Better

We’re launching a new Accessible Communications Pilot Project!

We’ll be working with our community to give feedback on how the NDIA communicates—making sure their messages are clearer and easier to understand for people with intellectual disability.

Stay tuned for more updates and ways to get involved!

Resources

This is a photo of a young adult women with Down syndrome sitting down and looking directly at the camera.

Making Voting Easier for People with Disability

The Australian Electoral Commission (AEC) is committed to making voting accessible for everyone, including people with disability and their carers.

With the federal election coming up, there are several voting options to support you or your loved ones:

Postal voting – Apply to receive ballot papers by post. A friend or carer can assist if needed.
Early voting – Available two weeks before election day at over 500 locations.
Mobile voting – Offered in some residential facilities and hospitals.
Polling place support – Bring a support person or ask AEC staff for assistance.

Accessible election information is available in Easy Read, audio, large print and more.

For details, click the button below or call 13 23 26.

View accessible voting information

This is a photo of lots of colourful socks

Get Involved in Lots of Socks for World Down Syndrome Day!

Lots of Socks is a fun, colourful campaign where people wear mismatched socks to raise awareness and funds for people with Down syndrome. It’s a global movement that sparks conversations and celebrates uniqueness and inclusion on 21 March—World Down Syndrome Day.

We’ve just launched updated awareness and inclusion packs for schools and businesses to get involved in Lots of Socks. These packs include useful information and activities.

Download them now and encourage your school or workplace to join in and celebrate!

Download the pack for schools

Download the pack for businesses

Health

This is a photo of a young lady with Down syndrome and a middle-aged lady doing stretches in exercise clothes

New Resource: Down Syndrome Regression Disorder Checklist

Down Syndrome Regression Disorder (DSRD) is a condition where a person with Down syndrome loses skills they had previously gained, such as:

Speech and communication
Mobility and coordination
Daily living skills
Social and emotional wellbeing

DSRD can be distressing for both the person and their family. To support families, we’ve developed a checklist to help track changes and guide conversations with healthcare professionals. This resource is based on input from parents and carers.

Download the checklist

This is a photo of a young man with Down syndrome speaking with a GP

Easy Read Cancer Screening Resources

Regular health checks are important for everyone. They help detect early signs of cancer and other health issues.

We’ve partnered with Cancer Council Victoria and Down Syndrome Victoria to create Easy Read guides covering:

Bowel screening
Cervical screening
Breast screening
Yearly health checks

View our Cancer Screening Resources

Please share these resources with family, friends and anyone who might find them useful.

Webinar - Power of together: Health care for people with intellectual disability

Getting good genetic health care is important to improve health care for people with intellectual disability.

At the end of last year, the National Centre of Excellence in Intellectual Disability Health partnered with GeneEQUAL to host a webinar for people working in health care to share how they work together to build more inclusive, person-centred and respectful health care and education.

The key takeaways from the webinar were:

An understanding of the value of working together with people with intellectual disability
A ‘how to’ process for working with people with intellectual disability (co-production)
Tips and resources to support people with intellectual disability in their choices about and access to genetic tests

The recording is now available to watch and share:

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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