December 2025

CEO Update

Welcome to DSA’s December e-news.

Yesterday, we celebrated International Day of People with Disability (IDPwD). We recognised the strengths and achievements of people with Down syndrome and other disabilities across Australia. Congratulations again to DSA Health Ambassador Olivia Sidhu, who represented our community so well as a national IDPwD Ambassador. You can watch a video made by our Down Syndrome Advisory Network for the day in this newsletter.

On Monday, we launched our digital Annual Report 2024-25 – Leading the way in inclusion. It includes stories, videos and updates from across our community. It also shows how we continue to put the voices of people with Down syndrome and intellectual disability at the centre of our work. If you haven't had a chance to read it yet, I encourage you to take a look.

Explore the Annual Report

Last week, the DSA Board met in Brisbane for our end-of-year planning session. We looked back at our work and achievements from the year. We also talked about how we can keep moving towards our three goals:

1. Improve quality of life for people with Down syndrome
2. Build capacity and collaboration across the Down syndrome community
3. Lead change in society’s awareness, attitudes and behaviours

We look forward to sharing more of our plans and progress with you next year.

There has also been a lot happening in our advocacy work. Last week, we were in Canberra meeting with federal politicians. We spoke about how to improve supports and services for people with Down syndrome and their families. You can read more in the Advocacy update below.

As we move into the festive season, I hope you and your family enjoy a safe and happy holiday break. Thank you for being part of our community this year.

Yours sincerely,

Darryl Steff
CEO, Down Syndrome Australia

Advocacy

Our recent submissions

This month, we made a submission to the Disability Discrimination Act review. We told the government that the Act does not work well for people with Down syndrome and intellectual disability. We explained that it must be clearer and easier to use, especially the complaints process.

Read our submission

We also responded to the Sexual and Reproductive Health Monitoring Framework and Data Strategy. We called for better data collection to improve prenatal screening and support, and to strengthen sexual and reproductive health services for people with Down syndrome and intellectual disability.

Read our submission

Meetings with MPs

Our Advocacy Team recently travelled to Canberra to meet with politicians. We spoke about how to improve supports and services for people we represent in the Down Syndrome Australia consortium.

We met with:

1. Minister for the NDIS, Senator the Hon Jenny McAllister
2. Dr Mike Freelander MP, Chair of the Committee for the inquiry into the proposed Thriving Kids initiative program
3. Libby Coker MP, Chair of Joint Standing Committee on the NDIS

DSA Board member Claire Mitchell spoke about improving the accessibility of NDIS plans and meetings. DSA Health Ambassador Olivia Sidhu spoke about the ongoing work of the Health Ambassadors and the importance of continuing this program. We also discussed the Thriving Kids initiative and shared what we are hearing from our community about changes to the NDIS.

We will continue to speak up for the needs of our consortium members, and keep you updated on our progress.

NDIS changes: A new way of planning from mid-2026

The Australian Government is changing NDIS planning to make it fairer and easier. This is called new framework planning.

New framework planning will use a support needs assessment to help set a participant’s budget. The support needs assessment is a guided conversation about a participant’s life, goals and support needs. Family, carers or supporters can join this conversation.

New framework planning will start rolling out in mid-2026. It will take about five years to reach everyone. This means some participants will not use the new way of planning for several years.

We are asking the NDIS for more information about when these changes are likely to roll out to our community. The NDIS has committed to providing clear information and support to participants, providers and the disability sector before any changes happen.

Other details of new framework planning are still being finalised. We will keep sharing updates about these important changes. You can read more on the NDIS website.

Community voices

Celebrating International Day of People with Disability

To mark this annual celebration on 3 December, members of our Down Syndrome Advisory Network (DSAN) made a short video. Each person shares something they are proud of.

Their messages show the strengths and achievements of people with Down syndrome across Australia.

Click the image below to watch the video to hear their stories.

Supporting My Rights app: Tell us what you think!

Have you tried the Supporting My Rights app yet?

This app helps people with Down syndrome and intellectual disability learn about their rights when using the NDIS. The app is helpful for support workers too.

The app was created by people with disability, for people with disability.

If you've already tried the app, we'd love to hear what you think.

Your feedback will help us make the app better and easier to use.

Take the survey

If you haven't downloaded the app yet, you can get it for free.

Download on the Apple App Store

Download on Google Play

DSAN monthly update

DSAN members have been learning how to write magazine articles, creating fantastic new content and building their leadership skills.

Learn more

World Down Syndrome Day 2026 theme

The theme for World Down Syndrome Day 2026 has been announced.

Next year, people around the world will stand Together Against Loneliness.

Anna, from our Down Syndrome Advisory Network, contributed this idea to Down Syndrome International. It's wonderful to see her voice help shape the global theme.

Everyone feels lonely sometimes. For many people with Down syndrome and other intellectual disability, it can happen more often. Families can feel this too. But the theme is also about something positive: the power of connection, friendship and real inclusion. It reminds us that everyone deserves to feel welcomed, valued and part of their community.

You can learn more about the theme and find resources through the World Down Syndrome Day hub.

Learn more

Health

Watch our recent health webinars

Thank you to everyone who joined our recent webinars on Down Syndrome Regression Disorder (DSRD) and Sleep Apnoea. It was fantastic to have so many families, carers and professionals take part.

Both sessions are now available to watch online. The recordings include clear information about each condition and the support options available.

Down Syndrome Regression Disorder (DSRD)
Webinar with Dr Cathy Franklin

Watch the webinar

Sleep Apnoea and Down syndrome
Webinar with Associate Professor Jasneek Chawla

Watch the webinar

We hope you find these recordings helpful. Please share them with others in your community.

Have your say on health education

Researchers from the University of Melbourne are looking to hear from people with disability about how health education programs can be made more inclusive and easier to use.

They are running an online focus group for women or people with a cervix who have a disability, live in Australia, and are aged 24 -74. It will take place on Tuesday 9 December at 2pm AEDT and will run for two hours. Participants will receive a gift card for taking part.

The focus group will explore how people with disability want to be involved in health programs, including programs that support people to learn about cervical screening. Your experiences will help improve future resources and make sure they meet the needs of people with intellectual disability.

If you or someone you know would like to take part, you can email the research team to express your interest.

Register your interest by emailing madeleine.clarke.1@unimelb.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, 805/220 Collins Street, Melbourne VIC 3000

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