World Down Syndrome Congress 

WDSC 2024 Brisbane is only 12 months away. Preparations are well under way to deliver an informative event bringing together leading international experts and advocates in a broad range of fields. We will also have an exciting social program offering the best of Australian music, culture and cuisine.

Dates: 9-12 July, 2024

To make sure you stay up to date with the Congress, register your interest here.

To find out more about the Congress, visit the Congress website:

Scrapheap Adventure Ride 

Are you ready for the Greatest Scrapheap Motorcycling Adventure in History? 

The Scrapheap Adventure Ride is a unique fundraising event. Motorcycle enthusiasts from all over the country purchase a bike for no more than $1000 and do it up for an adventure ride through the Aussie outback (or you can ride your own bike!) all while raising awareness and funds to support people with Down syndrome.

The 13th annual Scrapheap Adventure Ride will take place from September 29 - October 1, 2023 at Woodenbong NSW.

The ride is a great engineering event, filled with generous people Scrapping together to raise money for Down Syndrome Australia. To date the Scrapheap Adventure Ride has raised over $950,000 for the Down Syndrome Community and we are determined to crack the million dollar mark this year!!

Start building, or bring out the old rust bucket and get out there and start raising awareness and funds to bring your team home this year. Get a few mates together, register a team and head out on a scenic Adventure Ride! All are welcome on whatever you ride.

To find out more or to register, visit the Scrapheap Adventure Ride website:

Inclusive Communication Health Project

Our Inclusive Communication Health Project has had another successful 6 months. Our ten Health Ambassadors are all people with Down syndrome in paid employment with DSA, working across Australia and presenting to over 450 attendees, including Universities, hospitals and TAFE settings.

The Health Ambassadors also participated in four advisory and research committees and helped with the review and launch of our Health apps, which are now featured on the Health Direct website. The Health Ambassadors assisted with Down Syndrome: The Essentials, our recently launched e-learn module for health professionals and people interested in learning more about Down syndrome.

Our inclusive communication training is co-facilitated by our Health Ambassadors and regularly receives very positive feedback.

Key Word Sign Workshop – South Australia

Key word sign is a great communication tool to support your child's communication in the early years and beyond. Key word signing gives a visual message to support a verbal message. It can help children with their expressive language, helps support comprehension, and reduces frustration when other forms of communication are tricky. 

At this workshop, you can learn more about key word signing, including: 

• the features of sign production
• how to produce signs
• identify key words to sign in a spoken sentence
• practice using speech and sign.

Find out more information and register here:

CHAP

Have you heard of the CHAP? CHAP stands for Comprehensive Health Assessment Program (CHAP) and is an evidence-based tool for carrying out annual health assessments for people with intellectual disability in Australia.
There is strong evidence that these assessments are an effective way to identify unmet health needs in people with intellectual disability. The CHAP is updated annually in line with current evidence and clinical guidelines.

The Department of Health and Aged Care is working on improvements to accessibility and access to CHAP. An updated 2023 version of the CHAP for adults can now be accessed for free on the Department’s website at Adult Comprehensive Health Assessment Program (CHAP).

The 2023 Adult CHAP has been published as a fillable pdf, which can be completed on a device, or printed and completed by hand. Work continues on improving CHAP, including the development of an Easy Read version of Part 1 of the CHAP. An alternative version of the 2023 CHAP for young people is also in development.

There are Medicare benefit items specifically for the completion of this assessment by your GP. These are outlined in the CHAP and you may need to point these out to your GP.

Down Syndrome Australia continues to work with the Department of Health and Aged Care on promoting the use of CHAP and increasing its accessibility.

The CHAP can be used in conjunction with our Health Screening Tool.

National Roadmap for Improving the Health of People with Intellectual Disability

The National Roadmap for Improving the Health of People with Intellectual Disability (the Roadmap) was released in August 2021. This 10-year program was developed through numerous roundtable discussions with stakeholders. Down Syndrome Australia played a significant part in these discussions in our role as the national voice of people with Down syndrome.

The Roadmap outlines how we can create a health system where people with intellectual disability are valued, respected and have access to high quality, timely and comprehensive health care. It seeks to put people with intellectual disability at the centre of the reform process. 

The first Annual Progress Report has been published and is available on the Department of Health and Aged Care website. 

There is also an Easy Read version of the report.

Down Syndrome Australia continues to play an important role in the delivery of the Roadmap as a member of the Roadmap Implementation Group.

NDIS Early Childhood Approach age change

We welcome the NDIS announcement that from 1 July 2023, the age of children supported under its early childhood approach will include children younger than 9 rather than children younger than 7. This change will occur progressively over the next 2 years. 

Including children younger than 9 ensures that children and their families are supported by an early childhood partner during and after their transition to primary school.

Children who are currently NDIS participants turning 7 after the 1 July 2023, will remain with their early childhood partner until they turn 9, if they require support up to this age.

Children who are currently NDIS participants, who are turning 7 before the 1st July 2023, will transition to a Local Area Coordination partner, as is the current process.

More information is available on the NDIS website here.

You can also contact DSA or your local state or territory association for more information. 

NDIS Review

The NDIS Review is charged with reviewing the NDIS and, especially, improving the experience of participants and ensuring that the NDIS is sustainable. The Review has released an interim report "What we have heard".

Part A of this report draws out five issues which the Review panel thinks are the most challenging and important given their Terms of Reference from Ministers and what they have been told. Part B provides more detail on 10 areas for improvement.

For each area, the Review Panel have included questions which they are inviting responses on. You do not have to answer all of the questions, and you can make a submission in any format you choose.

Down Syndrome Australia, as the national voice for people with Down syndrome in Australia will be making a submission responding to these questions on behalf of all Australians with Down syndrome. 

You can tell us your thoughts so that we can include them in our submission by emailing them to info@downsyndrome.org.au. We are also, upon request of the Review Panel, conducting specific consultation sessions on some of the areas identified in this report.

Read the full NDIS report here: What we have heard report

You can give your feedback here: Have your say | NDIS Review

Voice to Parliament Easy Read fact sheet

Council for Intellectual Disability (cid.org.au) have shared a new Easy Read fact sheet on the Voice to Parliament. Learn more about the Voice to Parliament and what it means to First Nations people.

In this Easy Read fact sheet you can find out:

•    What is the Voice to Parliament?
•    Why is the Voice to Parliament important?
•    How will the Voice to Parliament vote happen?

Have your say

This research aims to understand the prevalence of sleep problems in Australian children with NDD and explore the treatments that children with neurodevelopmental disorders receive to improve their sleep. 

This research is open to everyone across Australia. 

The researchers hope that this research will pave the way for better understanding of sleep problems in children with NDD, improve treatment protocols and overall outcomes for patients who struggle with various aspects of sleep, as part of their wider condition. With your help, we can reach more patients and their families, who will give us valuable insight of the scale of these problems in the Australian community.

The competition has a long and successful history in Victoria. Now people with an intellectual disability from anywhere in Australia can join in. This is a great opportunity to show your creative side by writing or drawing a story of your choice.

There is a first prize of $500, with $200 for the best entry in each state.

Visit the VALID website for more information and to download the Easy Read application form.

The closing date is 30 September 2023. Good luck!

Creating change, together. 

As non-profit organisations, Down Syndrome Australia and its members are dedicated to supporting, informing and advocating for the needs of people with Down syndrome and their families across Australia.

Our teams work diligently to support people with Down syndrome through developing resources, advocating for positive change, engaging with the community and implementing innovative programs focused on creating an inclusive future for all.

Your ongoing support enables us to continue with this important work and together, shape the future for people with Down syndrome throughout Australia and beyond.  

All donations, no matter the amount, help us to continue our important work. 

All donations over $2 are tax deductible.

Down Syndrome Resource Hub

We have a wide range of resources on our Resource Hub. Find out about early childhood, adolescence, health, technology, ageing and more!

Join the conversation

Share your story with us for a chance to be featured! 
Simply tag us on social media @downsyndromeaustralia or email info@downsyndrome.org.au