February 2025

This is a banner image for DSA's February enews, It includes a photo of two males and a female with Down syndrome at the VALID Conference 2025

CEO update

Welcome to DSA’s February e-news!

Last week, some of the DSA team and I had a fantastic time attending the VALID – Having a Say Conference in Geelong, Australia’s largest annual disability conference. It was a wonderful opportunity to connect with the disability community, including our ambassadors, industry peers and partners.

This is a photo of DSA staff at the VALID Conference

This year’s theme, Our Lives, Our Voices, highlighted the importance of ensuring the stories shared by people with disability lead to real, meaningful change.

We loved hearing from the community on important topics, such as how people with disability can live ordinary lives—finding meaningful jobs, living where they choose, engaging with their communities, and enjoying life just like anyone else. We were particularly proud of our DSA ambassadors and team members who delivered outstanding presentations.

As I mentioned last month, ageing is a key focus for DSA this year. Thanks to improvements in healthcare and services, people with Down syndrome are living longer and healthier lives. While this is fantastic, it also brings new challenges. Our DSA Ageing Project focuses on supporting older people with Down syndrome. You can read more about it here.

There’s so much ahead, and I’m grateful for your continued support as we work towards meaningful change.

Sincerely

Darryl Steff
CEO, Down Syndrome Australia

This is a photo of Down Syndrome Australia CEO Darryl Steff

Advocacy

This is a photo of a doctor with a pregnant woman

DSA Advocacy in Action

In our last update, we were pleased to share that the planned NDIS changes to music and art therapy would be paused until a review of the evidence was completed. That process is now underway. We recently reached out to our community on social media for their experiences with these therapies, and we’d like to thank everyone who responded! Our advocacy team will include these stories in a submission on the issue.

We’re also continuing to work closely with the NDIA. They’re listening to our feedback and we’re seeing positive changes. For example, eligibility letters have already been updated and will continue to improve. Additionally, timelines for NDIS decisions have been extended from 28 to 90 days to make the process smoother. We’re also in ongoing talks with the NDIA about impairment notices. This will ensure better communication, which will help both our community and the NDIS.

In other news, we’ve reviewed our advocacy position on prenatal testing. You can read the updated version on our website here. Prenatal testing is one of our six advocacy priorities. We want to ensure that people who choose to have prenatal testing receive accurate, up-to-date information, helping to reduce stigma in the community. We use this position to guide our conversations with Health and Social Services Ministers to improve training, programs and systems.

If you have any questions or feedback for the advocacy team, please email advocacy@downsyndrome.org.au.

This is a photo of Roy McConkey an advocate for people with Down syndrome

New Video: Self-Advocacy for People with Down Syndrome

We’re excited to share our new advocacy video featuring Roy McConkey, a former Professor of Disability Studies at the University of Ulster in Northern Ireland. Roy is a renowned advocate for people with Down syndrome and was a keynote speaker at last year’s World Down Syndrome Congress.

In the video, Roy shares why self-advocacy is crucial for people with Down syndrome and how families and supporters can play an important role in empowering people to advocate for themselves.

Click on the image above to watch the video. We encourage you to share your feedback and stories in the comments!

Health

This is a photo of a mother and daughter smiling and embracing

Learn About Cervical Screening

Down Syndrome Victoria is hosting two online information sessions to help women with Down syndrome and their families learn about the importance of cervical screening.

Learn about:

How cervical screening helps maintain health and prevent cervical cancer.
The difference between pap smears and the new Cervical Screening Test.
When to start screening and your options for taking the test.

Information session for women with Down syndrome

When: Wednesday 19 February 2025

Time: 7:00 pm – 8:00 pm (VIC)

Learn more and register

Information session for families and carers

When: Wednesday 26 February 2025

Time: 7:00 pm – 8:00 pm (VIC)

Learn more and register

Note: Women with Down syndrome are also welcome to attend this session.

This is a banner image with details for the National Centre of Excellence in Intellectual Disability Health Conference 2025.

Register for the National Centre of Excellence in Intellectual Disability Health Conference 2025!

It’s time to rethink healthcare for people with intellectual disability. This year’s conference theme, Working Together Every Step of the Way, is all about coming together to shape the future of healthcare for people with intellectual disability.

The conference will bring together people with lived experience, families, health and disability professionals, academics, policy makers, advocates and sector leaders. It’s a chance to hear from all voices and perspectives and discuss how we can work together to improve healthcare.

Early-bird tickets are available until 1 March, so don’t miss out.

Learn more and register

Conference Scholarships

Do you need help with the cost of attending the conference?

The Centre has a Conference Scholarship Program.

Conference Scholarships help with the cost of conference registration, travel and accommodation.

If you are a person with intellectual disability, or a family member or supporter of a person with intellectual disability, you are eligible to apply for a Conference Scholarship.

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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