View in a browser April 2025 CEO updateWelcome to DSA’s April e-news! It’s been a busy and exciting time at DSA. On 21 March, we joined people around the globe in celebrating World Down Syndrome Day (WDSD) 2025. This year, DSA highlighted the fantastic contributions people with Down syndrome a
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April 2025

                                                                                                               





CEO update

Welcome to DSA’s April e-news! 


It’s been a busy and exciting time at DSA. On 21 March, we joined people around the globe in celebrating World Down Syndrome Day (WDSD) 2025. This year, DSA highlighted the fantastic contributions people with Down syndrome are making in organisations and workplaces across Australia. This celebration aligned with the launch of our Right to Work campaign, which focuses on improving wages and working conditions for people with Down syndrome.


We’ve been thrilled with the positive response to the campaign – from our community, the media and the general public. It’s been fantastic to see local and national media coverage across television, radio and print. Charlotte Bailey, our Employment Ambassador, was featured on The Project, where she shared her experience in the workplace and called for an end to $3 an hour wages for people with Down syndrome. 


Click the image below to watch our story on The Project:


The Guardian also featured Charlotte in an article, highlighting the need for change. 


Read the story in The Guardian 


We’re also excited to report that our petition calling for the phasing out of $3 an hour wages has surpassed 1,000 signatures! If you haven’t signed yet, please do – and share it with your networks: 


Sign the Petition - Right to Work


To learn more about the campaign, visit our Right to Work website. Keep an eye out for more updates and stories on social media in the coming weeks. 


In other news, we’ve reviewed the 2025-26 Federal Budget, announced last week, and its potential impact on our community. For more details and to read our full response, see the advocacy update below. With the Federal Election approaching on 3 May, we’ve also put together Easy Read Voting Information to help our community prepare. You can find the link to this further down in this newsletter.


Finally, we’re excited to welcome Michael Cox to the DSA Board. Michael is a passionate self-advocate, and we’re thrilled to have him on board to help guide DSA into the future. You can learn more about Michael below. 

Sincerely


Darryl Steff

CEO, Down Syndrome Australia

This is a profile photo of Darryl Steff, CEO of Down Syndrome Australia

Advocacy

DSA Advocacy in Action

In March, we submitted a response to the NDIS Quality and Safeguards Commission, advocating for the mandatory registration of Supported Independent Living (SIL) providers. We strongly believe that all SIL providers should be registered to ensure they meet high-quality, safety and human rights standards – and that these standards are regularly monitored. We also recommended that the Commission prioritise accessible outreach and support for residents of congregate housing, working to improve standards and oversight in these settings. Read our full submission. 


We’ve also been supporting other Disability Representative Organisations (DROs) on important initiatives. For example, the Australian Autism Alliance is pushing for a national framework for assistance animals. Currently, the NDIA guidelines exclude vital animals, such as epilepsy seizure dogs and PTSD support animals, from funding. We’re calling for a national, consistent approach to regulating and accrediting assistance animals. 


The DSA Consortium has also endorsed Inclusion Australia’s submission on self-directed supports registration. While we support the registration of self-directed support providers, we’re concerned about the automatic categorisation of higher-risk supports under the Advanced Registration category, particularly in cases involving restrictive practices and behaviour support. 


Finally, on 25 March, the Federal Government released its 2025-26 Budget. Alongside other DROs, the DSA Consortium raised concerns about the lack of investment in people with disability. The budget proposes significant cuts to the NDIS and leaves many questions unanswered about how ongoing support for people with disability will be provided. In crucial areas such as cost-of-living measures, housing strategy and income support, people with disability are largely overlooked. We need a clear, inclusive plan to ensure that no one is left behind. Read our full statement. 

Our Community in Action

DSA Welcomes Michael Cox to Our Board! 

We’re excited to welcome Michael Cox, a passionate self-advocate from Queensland, to the DSA Board! 


Michael’s commitment to advocating for people with Down syndrome, along with his leadership, will be invaluable as we continue working to promote rights and inclusion. It’s important that people with Down syndrome have a real v in shaping the decisions we make, and we’re thrilled to have Michael’s experience and dedication on board. 


Michael shared, “I believe that I was put on this earth to help create a positive change. Being a part of Down Syndrome Australia’s Board will help make this happen.” 


Learn more about Michael and our other board members:

Meet our Board Members


The Learn and Lead Group Meet-up 

Recently, the Learn and Lead Group came together for an in-person meeting in Sydney to get to know each other better and work on their shared goals. 


The Learn and Lead Group is made up of 10 people with intellectual disability from across Australia who advise the National Centre for Excellence in Intellectual Disability Health. 


During the meeting, members had the chance to learn more about advocacy, public speaking and contribute to the Centre's strategic planning. 


Here’s some of the fantastic feedback from the meeting: 


“I feel like I’ve improved my confidence and I’m not as anxious since joining the Learn & Lead Group.” 


“I enjoyed meeting everyone face to face and getting to know them better.” 


“It was a great experience! I loved all the meetings and enjoyed being active and talking about self-advocacy.” 


“I was blown away by how she spoke up at the meeting and interacted with her peers and presenters so effortlessly. It was truly an inclusive and respectful environment.” 


Learn more about the Learn and Lead Group and its members:

The Learn and Lead Group


Audrey’s World Down Syndrome Day Presentation 

Audrey O'Connor, a member of the Centre’s Learn and Lead Group, recently co-presented with Centre Director Julian Trollor at Down Syndrome NSW’s World Down Syndrome Day event. 


Audrey did an amazing job sharing her personal story of being in hospital and speaking about her role in the Learn and Lead Group. Her presentation really resonated with the audience, highlighting the power of self-advocacy and the importance of her work. 

Resources

Easy Read Resource: How to Vote 

To help people with disability prepare for the election on 3 May, we’ve created an Easy Read Voting Information guide. 


This guide explains how to vote in simple, clear terms. It’s perfect for first-time voters or anyone who needs extra support understanding the voting process. 

View Easy Read Voting Information

Please share this with friends, family and anyone who might need it.

Health

Help Improve Dementia Diagnosis for People with Down Syndrome 

Monash Health is looking for people with Down syndrome, and their families or support people, to help improve dementia diagnosis. 


They’re running interviews to find out what a memory clinic for people with Down syndrome should look like. There’s not much research in this area, so your input is important! 


If you or a loved one is over 18, you can take part in a 45-minute online interview. 


This is a great chance to help shape future health care for people with Down syndrome. 


If you're interested in taking part, contact Madeleine Healy at madeleine.healy@MonashHealth.org 

Research Opportunity for Young People with Disability 

Is your child aged 15 to 24 and living with a disability? The University of Sydney wants to hear their story! 


They’re looking for young people to take part in a study called “Experiences of Young People with Disability and Influences on Their Mental Health.”


This study is about hearing your child’s experiences, what matters to them and how these experiences have affected their mental health. 


The study involves one or more online interviews (60-90 minutes). Accessibility needs will be supported. Participants will receive a gift card for their time. 


To learn more or sign up, contact Jodie Bailie at jodie.bailie@sydney.edu.au or call 0428 601 559. 


Medical Professionals: Join the Launch of the Medical Interest Group 

We’re excited to launch the Down Syndrome Medical Interest Group Australia (DSMIG-AUS)! This new group is for healthcare professionals who want to learn more about the medical aspects of Down syndrome and share knowledge with others in the field. 


DSMIG-AUS will bring together professionals to discuss research, share best practices and stay updated on key medical topics. 


If you're a medical professional interested in joining the group, you can register your interest by clicking the button below.

Join the Medical Interest Group

 

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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.


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