October 2025

CEO Update

Welcome to DSA’s October e-news

October is Down Syndrome Awareness Month – a time to celebrate, learn and shine a light on the contributions people with Down syndrome make to our communities. Throughout the month, we’ll be sharing stories and resources across our social media channels.

Many of our state and territory partners will also be running StepUP! events across Australia. StepUP! is a fundraising and awareness campaign that celebrates the achievements and impact of people with Down syndrome. Keep an eye on your local Down syndrome organisation’s social media to see what’s on near you.

Last month, I attended the Inclusion International Congress in Dubai with Health Ambassador Alishia Lindsay. We presented on DSA’s work on health equity and learned from advocates and leaders from around the world. The congress was a fantastic opportunity to connect globally, exchange ideas and bring back insights to strengthen inclusion and advocacy in Australia.

Read my reflections on the Congress.

Today, I’m off to Lake Cargelligo, NSW for the Scrapheap Adventure Ride! Riders will gather at Lake Cargelligo Caravan Park for a weekend of fun, entertainment and camaraderie. I’m excited to be part of it and watch them cross the finish line – all to raise awareness and funds for people with Down syndrome in rural and remote communities. The ride is aiming to raise $100,000 this year and its not too late to make a donation!

Learn more about Scrapheap or make a donation.

Finally, we’re pleased to present two free webinars for families later this month and in early November. The first focuses on Down Syndrome Regression Disorder. The second is on Sleep Apnea. You’ll find full details further down this newsletter. We encourage families to register and join these sessions.

Yours sincerely,

Darryl Steff

CEO, Down Syndrome Australia

Advocacy

Unpacking the NDIS Changes

Over the last 12 -18 months, the NDIS has gone through significant changes. Some are already affecting participants, and some are still planned. One of the big changes is the New Framework Planning process, introduced in legislation last year. It was meant to start in September, but the Government has listened to feedback and pushed the start date back to mid-2026.

This gives us more time to understand the changes and make sure community needs are included in the design. The Down Syndrome Australia Consortium is involved in meetings about these reforms and is making recommendations to keep the NDIS accessible. We’re also working to protect everyone’s interests, whether someone has a smaller plan with a few supports or a more complex plan that includes health supports or accommodation.

The New Framework Planning process will look at a person’s support needs, their personal and home circumstances, and take a closer look at high-cost supports. The goal is to make planning fairer for everyone. We’re continuing to ask the Government questions about fairness to make sure each person’s needs are met.

We understand that these changes create uncertainty and we’ll keep sharing updates on NDIS reform as we get them. You can also follow Down Syndrome Australia on Facebook, Instagram and LinkedIn for the latest news.

Community Voices

Eoin and Chris Take on New Global Roles!

We’re thrilled to congratulate Eoin Gibson (QLD) on his appointment as DSA’s Australian Ambassador in Down Syndrome International’s Ambassador Program, and Chris Bunton (NSW) on joining DSI’s new Self Advocacy Group Network.

Both will represent Australia, connect with self-advocates around the world and bring back insights to strengthen inclusion locally.

We also thank Andrew Domahidy, who served as Ambassador for four years, for his dedication and global advocacy.

Learn more

Supporting My Rights Project: Behind the Scenes in Melbourne

Last month, our Supporting My Rights group came together in Melbourne to record podcasts for participants and service providers. The podcasts focus on good service and communication for people with intellectual disability.

Click the image below to watch a video of the team in action and hear how they shared their voices for the project.

DSAN Monthly Update

This month, DSAN welcomed two new members, Isaiah Caruso from South Australia and Jack Williamson from Victoria.

Isaiah and Jack are already bringing energy, ideas and passion to the team.

Learn more

Building Independence: Tips from DSAN Members

Learning independence is an important goal for many people with Down syndrome. It helps build confidence, develop everyday skills and gives people the freedom to make their own choices.

In this video, our DSAN members share their top tips for becoming more independent. Click on the image below to watch it.

Health

Free Webinar: Down syndrome Regression (DSRD) Disorder

Join Down Syndrome Australia on Tuesday 28 October for a 90-minute webinar with Dr Cathy Franklin. Learn what DSRD is, how it’s diagnosed, what regression can look like and the treatment options available.

The session is for parents, siblings and carers of people with Down syndrome.

Learn more and register

Free Webinar: Sleep Apnoea and Down syndrome

Join Down Syndrome Australia on Wednesday 5 November for a 60-minute webinar with Associate Professor Jasneek Chawla. Learn how common sleep apnoea is in children and young people with Down syndrome, why it’s important to treat and how it’s diagnosed and managed.

The session is for parents, carers and health professionals supporting young people with Down syndrome.

Learn more and register

Help Improve Health Services

Are you a primary carer of a young person with intellectual disability?

The Kids Research Institute Australia and partners want to hear from you. They’re running Health-SAVVI 2, a study on how health literacy and healthcare experiences affect young people and their families.

Carers of young people aged 5 - 30 can complete a one-hour survey. Your answers will help create resources for young people, families, clinicians and health services.

Participants get a $50 e-voucher.

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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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