September 2025

CEO Update

Welcome to DSA’s September e-news

Last week, the DSA team came together in Melbourne for a two-day planning catch-up. It was a fantastic chance to connect in person, share all our work and celebrate our achievements. We also looked ahead to the next 12 months, and even the next 10 years, to consider how we can make an even bigger difference for the Down syndrome community. We left inspired and ready to put our plans into action to keep working towards a fairer, more inclusive world for people with Down syndrome.

Photo: The DSA Team in Melbourne

This catch-up also highlighted just how much important work is happening across our projects, from employment and ageing initiatives to inclusion, disability rights, and more. You can read about some of these projects in this newsletter.

As always, advocacy also continues to be a priority. Late last month, Minister Mark Butler announced the new $2 billion Thriving Kids program, targeting children with mild-to-moderate developmental delays and autism. While the investment is welcome, the announcement was made without consultation with the disability community. We are concerned about how the program will fit with existing supports and the broader system of Foundational Supports. Our expectation is that children with Down syndrome will continue to be eligible for NDIS supports. DSA and other disability representative organisations will continue to push for co-design with people with disability to ensure the program and other reforms work for everyone. Read our joint statement.

Sincerely,

Darryl Steff

CEO, Down Syndrome Australia

Advocacy

Have Your Say on the Disability Discrimination Act

The Attorney-General’s Department is reviewing the Disability Discrimination Act 1992 (DDA).

The review will consider 15 recommendations from the 2023 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. These include updating definitions of discrimination, introducing a duty to prevent discrimination and making sure the law works for everyone.

We encourage anyone in our community who is interested to make a submission. You can share your thoughts on whether the DDA is working, any discrimination you’ve experienced or what inclusion means to you.

Submissions can be written, recorded as audio or video, or completed through the community survey. The consultation is open until 24 October 2025.

Learn about the review

Make a submission

Community Voices

Inside DSAN: Monthly Update with Sandon

This month, Sandon from Tasmania shares the latest from our Down Syndrome Advisory Network (DSAN).

From finalising their values to learning about leadership, advocacy, and more, it’s been another productive and exciting month for the group.

Read Sandon's update

New DSAN Video: Celebrating our Furry Friends

To celebrate International Dog Day recently, Our DSAN members created a video introducing their furry friends and sharing the joy they bring to their lives.

Click the image below to watch the video:

Exciting Times for Supporting My Rights!

After months of hard work, our Supporting My Rights app and resources are now at testing stage. Both have been co-designed with people with intellectual disability to help our community and service providers understand and stand up for their rights when using the NDIS. Testing will show us what works well and what we can improve, bringing us one step closer to launch.

It’s also been a big week for the SMR Project Reference Group. They came together in Melbourne to record podcasts and take part in an Easy Read photo shoot. It was a great chance to connect, have some fun and share their voices for the project.

Health

The Ageing Well with Down Syndrome Project

The Ageing Well with Down Syndrome project, run by DSA in partnership with the nib foundation, is now in full swing. We’re creating practical, accessible resources to support the health and wellbeing of people with Down syndrome.

We’re excited to welcome Rohan Fullwood as Project Officer. He’ll be working with Beth Sywulsky, the Project Lead, to bring the project to life.

We also have a fantastic Ageing Advisory Group on board. This group will help decide what resources are needed, shape them and make sure people with Down syndrome are involved every step of the way. Our members are:

Emily Porter: DSA Health Ambassador representative

Dr Madeleine Healy: Geriatrician, Medical Lead Cognitive Dementia and Memory Service | Aged and Rehabilitation Division; PhD candidate, Monash University

Rebecca Konz: Associate Professor & Chair, Intellectual Disability Mental Health, UNSW Sydney; Neuropsychiatrist, SESLHD

Margot Elliffe: RN (retired), Midwife and Child & Family Nurse, and parent of a 38-year-old daughter with Down syndrome

Hannah Holmes: Senior Quality and Innovation Manager, Honeysuckle Health

The group will hold its first meeting on 9 September 2025. We really appreciate their time, energy and expertise. Their input will make sure this project is meaningful, useful and inclusive.

Stay tuned for more updates as the project progresses!

Episode 3 of Voices for Better Care Podcast is now available!

This episode focuses on improving mental health care for people with intellectual disability. It explores the barriers they often face in recognising issues, getting support and accessing effective treatment.

Guests include:

Rebecca Koncz, UNSW Chair of Intellectual Disability Mental Health

Rory Keyes, self-advocate, researcher and project worker at the Centre

Excellence in Practice: Voices for Better Care is a podcast for healthcare professionals who want to improve their practice when working with people with intellectual disability. It's produced by the Centre of Excellence in Intellectual Disability Health.

Access the podcast

Share Your Experience: NDIS Support Lists and Funding Changes

Whereto Research is inviting people with Down Syndrome, and their family members, to share feedback on two recent NDIS changes: the Support Lists and shorter funding periods.

Your feedback will help the NDIA understand what’s working, what’s not and how they can get better at explaining changes.

Consultations will happen during September 2025 online, by phone, in person (Melbourne) or by written/video feedback. People taking part will get a $100 gift voucher for their time.

For more info or to register, contact Fiona Collis at fiona@fionacollis.com, call 0439 803 299, or sign up here:

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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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