November 2025

CEO Update

Welcome to DSA’s November e-news.

Last month, we celebrated Down Syndrome Awareness Month, a time to recognise, learn and shine a light on the valuable contributions people with Down syndrome make to our communities.

Our state and territory partners hosted wonderful events to celebrate the month and raise funds for their communities, from family fun days to gala dinners. If you joined in, we hope you had a great time and felt proud to be part of such a strong community.

Throughout the month, we also shared videos from our Down Syndrome Advisory Network (DSAN) members. They told us what they want people to know about Down syndrome. You can watch them all on our social media channels.

In early October, I had a fantastic time in Lake Cargelligo, NSW, with my daughter Bella for the Scrapheap Adventure Ride 2025.

Thanks to everyone’s generosity, The Scrapheap Adventure Ride raised over $100,000 to support people with Down syndrome in rural and remote communities.

A big shoutout to the riders, and to Perry for leading the charge. We really appreciate all your efforts. A special thank you to everyone who donated too.

Photo: Bella with the Scrapheap riders.

Finally, I recently spoke at the Inquiry into the Thriving Kids initiative.

I presented our views to the Standing Committee on Health, Aged Care and Disability and answered questions about how the initiative could better support children with Down syndrome.

Read our full submission.

Yours sincerely,

Darryl Steff

CEO, Down Syndrome Australia

Advocacy

Fair Work Ombudsman inquiry into the disability support sector

The Fair Work Ombudsman is running an inquiry into the disability support sector. They want to understand issues like rates of pay, high staff turnover and service demand.

They’re asking people with disability, workers and employers to share their experiences and ideas for change. If you’d like to take part, you can email the Ombudsman or attend an in-person forum.

Inclusive Employment Australia (IEA) has launched

The new Inclusive Employment Australia (IEA) program started on 1 November.

IEA is a government program that helps people with disability find and keep jobs. It replaces Disability Employment Services (DES).

A key change is that people who work fewer than 8 hours a week can now join IEA. This means more people with Down syndrome can get support.

You don’t have to join IEA if you don’t want to.

You can also choose other programs, like DSA’s Employment Connections, which is designed specifically for people with Down syndrome.

If you’d like to know more, contact us. We can help you find the right option for you.

Community Voices

Charlotte Bailey nominated for Human Rights Award

Huge congratulations to self-advocate Charlotte Bailey!

Charlotte has been nominated in the Young People’s Award category for the 2025 Australian Human Rights Awards.

Charlotte is an Employment Ambassador from the ACT and a spokesperson for our Right to Work campaign.

This nomination recognises her passion and commitment to fair pay and inclusive employment.

We wish Charlotte the very best of luck!

Learn more

Olivia Sidhu announced as 2025 IDPwD Ambassador

Congratulations to DSA Health Ambassador Olivia Sidhu, who has been announced as a 2025 International Day of People with Disability (IDPwD) Ambassador.

In this role, Olivia will share her experiences and promote inclusion for people with Down syndrome and intellectual disability.

Olivia has represented Australia at the United Nations and continues to educate healthcare professionals about inclusive communication to improve health outcomes.

We’re proud to see Olivia’s leadership recognised nationally.

IDPwD will be held on 3 December 2025.

Learn more

Welcome to Lachie Gapes

We’re delighted to welcome Lachie Gapes to the DSA team as our new Project Officer for the Inclusion and Accessibility project.

Lachie will help review and update resources, build skills for people with Down syndrome and promote inclusion in employment.

He will work closely with experts and people with Down syndrome to make sure their voices guide every part of the project.

The Supporting My Rights app is almost here!

After months of hard work, the Supporting My Rights app will be ready to download from 14 November. Mark your calendar!

The app will help make the NDIS easier to understand for people with intellectual disability.

In this video, members of the Supporting My Rights Reference Group share why they joined, why co-design matters and what they’ve loved most about the project.

Click the image below to watch the video.

DSAN Monthly Update with Annie

This month, DSAN member Annie shares what the group has been up to, from learning about advocacy and social media to creating videos for Down Syndrome Awareness Month.

It’s been a big few weeks full of learning and creativity.

Read Annie's update

Health

Ageing Well with Down Syndrome update

Recently, Rohan Fullwood, Project Officer, presented at the Intellectual Disability Health and Ageing Policy Roundtable at the National Centre of Excellence in Intellectual Disability Health.

Rohan shared insights about the Ageing Well with Down Syndrome project, supported by nib foundation, and the involvement of people with Down syndrome in shaping this important work.

Photo: Rohan Fullwood.

The Ageing Advisory Group has now agreed on topics for new resources, including:

1. Anxiety and depression
2. Grief and loss
3. Menopause
4. Preventative health
5. Dementia

The group will also produce a video sharing people’s views on ageing.

We thank nib foundation for their ongoing support in helping create these resources.

Research opportunity: Genomics and disability

Researchers from the University of Queensland want to hear from Australians with disability about their experiences taking part in genomics research (studies about genes and health).

They’re interested in learning what makes it easier or harder for people with disability to take part in research.

If you’re 18 or older, speak English and have previously been part of genomics research, you can join a one-hour online chat via Zoom.

Participants will receive a $50 gift card as a thank you.

To learn more or get involved, email Radostina Breedt at r.breedt@student.uq.edu.au
.

Research opportunity: Cancer care for people with intellectual disability

Dr Jennifer Baldock from Cancer Council SA is leading a national project to improve cancer survivorship care for people with intellectual disability.

Researchers are inviting:

1. People with intellectual disability aged 18+ who live in Australia, can give consent, and either have had cancer or have not had cancer but want to share your thoughts on cancer care.

2. Family members or friends who support an adult with intellectual disability who has had cancer since the NDIS was introduced (diagnosis may have been earlier).

3. Disability service providers who have supported adults with intellectual disability who have had cancer since the NDIS was introduced (diagnosis may have been earlier).

4. Healthcare professionals with experience supporting adults with intellectual disability who have had cancer since the NDIS was introduced, in Australia.

Participants can take part in an interview or small focus group online, by phone or in person (SA only).

For more information or to take part, contact: jennifer.baldock@flinders.edu.au

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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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