August 2025

CEO Update

Welcome to DSA’s August e-news!

We recently announced an exciting new partnership with nib foundation. With their support, we’ll be creating easy-to-understand health guides for people with Down syndrome and their supporters.

These guides will help identify early signs of age-related health issues, support timely action and make it easier to access preventative care. We look forward to sharing more details soon.

We’re also proud to be working with the University of Queensland and people with intellectual disability on a project exploring how to balance safety and independence. It’s one of 15 disability-led initiatives funded by the National Disability Research Partnership to improve safety for people with disability.

People with intellectual disability are often not given the opportunity to be agents over their own lives. Supporting them to make choices and have real agency and power can make their lives safer. This project is an important step in making that happen. You can read more in this ABC article.

Another key priority is our Right to Work employment campaign. We're now turning our attention to one of the campaign's asks: Making the Disability Support Pension (DSP) work better for workers.

The current DSP rate is below the poverty line. It also limits how much people can earn. Currently, people on the DSP can only earn up to $178 per fortnight before their payments are reduced. If payments are reduced for too long, people can lose access to the DSP altogether.

We want to change that, so people can work, earn a fair wage and still have a safety net if things change. We’ll keep you updated on our progress.

In the meantime, if you have a DSP story you'd like to share, please email us at righttowork@downsyndrome.org.au

Finally, a big thank you to all the families and supporters who took part in our recent National Survey. We had a record 339 responses, which is fantastic! In this issue, we’re sharing some of the key findings.

Thanks for staying connected. We hope you enjoy this month’s updates.

Sincerely,

Darryl Steff
CEO, Down Syndrome Australia

Advocacy

DSA Advocacy in Action

The DSA Consortium recently took part in two important national consultations.

In August, the Treasury is hosting an Economic Reform Roundtable to discuss key issues shaping Australia’s future.We made a submission to highlight the economic matters affecting people with Down syndrome and other intellectual disability.

Our submission focused on three main points:

1. Reform the Disability Support Pension (DSP). People with lifelong disability, such as Down syndrome, should have permanent access to the DSP regardless of their employment status.

2. Set a disability employment target for the public sector.

3. Recognise the positive impact of the NDIS on the Australian economy.

We’re also working with other Disability Representative Organisations on a joint submission to the NDIA about the NDIS Support Lists, also known as the “in and out” lists.

Since October 2024, NDIS participants can only use their funding for items listed as approved supports. We know this system is causing stress and confusion for many people with disability and their families.We believe the support lists should follow clear principles instead of relying on a rigid list that doesn’t reflect individual needs. Many items currently excluded should be funded if they relate directly to a person’s disability support needs.

We’ll share the submission on our website soon.

Community Voices

Read the latest issue of Voice – Housing and Living

This issue of Voice is all about making choices as an adult, like where you want to live and who you want to live with.

We spoke to people across Australia who shared their stories, showed us their homes and told us what they love about where they live. A big thank you to everyone who took part.

You’ll also find useful information about your rights at home, NDIS funding options, and where to get support when making big decisions.

Read Voice online

We hope you enjoy it!

Inside DSAN: Monthly Update with Anna

This month, Anna from Western Australia shares what she enjoys about being part of the Down Syndrome Advisory Network (DSAN).

Anna also talks about what the group has been working on, including learning about marketing and communication, making videos for DSA’s social media, and helping shape a vision, mission and goals for the network.

Read Anna's update

New Video: Friendship

International Day of Friendship was held at the end of last month. To celebrate, our DSAN members introduce you to their friends and share what those friendships mean to them.

Click the image below to watch the video:

National Survey: What You Told Us

A big thank you to all the families and support people who recently took part in our 2025 National Survey.

Your feedback is incredibly valuable. It will help us provide the right information and resources to support you and your family member or client with Down syndrome.

Here’s what you told us in this year’s survey:

80% said you can find the resources, advice or referrals you need about Down syndrome.

77% of people receive support from their local Down syndrome association, and 94% said it was helpful.

Most people said the best way to get information is online (followed by email, from a human and social media).

79% said you can access information in formats that work for your family member, like Plain English or Easy Read.

The most important issue for 2025 is health, including general health, the NDIS and thinking about the future.

Only 51% said they’re aware of supported decision making, so we’ll share more about what it means and how it can help.

If you have any questions about the survey results, please get in touch with

Beth Sywulsky, Project Manager, Information for Life at: Beth.Sywulsky@downsyndrome.org.au

Health

Webinar: Healthcare Models for Australians with Intellectual Disability

The National Centre of Excellence in Intellectual Disability Health is launching a new report on healthcare models for people with intellectual disability in Australia.

Join researchers and experts in a webinar to hear the key findings, recommendations and how these can help improve policy and practice.

This webinar is ideal for healthcare workers, families, disability organisations, policymakers and advocates.

When: Tuesday 19 August 2025, 3 – 4:30 PM (AEST)

Episode 2 of Voices for Better Care Podcast is now available!

This episode focuses on effective communication in healthcare for people with intellectual disability.

Guests include Nick Lennox, Senior Medical Advisor at the Department of Health, Disability and Aged Care, and Beck Biddle, a self-advocate and member of the Centre’s Learn and Lead Group. They discuss ways healthcare professionals can improve communication and provide better care.

Voices for Better Care is produced by the National Centre of Excellence in Intellectual Disability Health. The podcast is for healthcare professionals looking to improve their practice when working with people with intellectual disability.

Access the podcast

Supporting people with intellectual disability living with dementia

The National Centre of Excellence in Intellectual Disability Health have a new research project about supporting people with intellectual disability living with dementia. The researchers are inviting health, disability and aged care workers to complete an anonymous online survey.

Find out more about this UNSW research project in the participant information sheet and consent form. The link at the end of the consent form will take you to the survey.

Learn more

Menstruation Research Opportunity

The University of Western Australia is looking for parents of young people aged 10 to 25 with an intellectual disability who have started menstruating to take part in a research project.

The study wants to understand how families manage periods and make decisions about them.

If you take part, you’ll do a one-hour interview by phone or video call at a time that suits you.

To take part, or for more information, email Jess Keeley at: jess.keeley@thekids.org.au

ScreenEQUAL Cervical Screening Research Trial

If you’re a family member or support person of someone aged 25 to 74 with an intellectual disability who has a cervix, or a GP or nurse, you can take part in an online research trial to improve cervical screening for people with intellectual disability.

ScreenEQUAL aims to help people with intellectual disability make informed decisions about cervical screening and have a better experience with the test.

This study is led by the University of Sydney along with partner organisations in NSW.

Find out more and get involved:

Facebook

Instagram

Twitter

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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