October 2024

DSA October Community News banner image with males with Down syndrome

CEO update

Welcome to DSA's October e-news!

October is Down Syndrome Awareness Month. This month, we celebrate the incredible lives and abilities of people with Down syndrome while highlighting the importance of inclusion, understanding and advocacy for our community.

As part of our commitment to advocacy, we’re excited to announce that Down Syndrome Australia has signed on as a partner for the Australian Human Rights Act campaign. This Act will ensure that values we all share – like fairness, respect, dignity and compassion – are always at the heart of government decisions, laws and services.

Learn about the Human Rights Act campaign

Throughout October, look out for local events hosted by your Down syndrome state or territory organisation. These gatherings are fantastic opportunities to connect, share stories and celebrate our community.

Keep an eye on our social media accounts this month as we share various resources. We encourage you to share your own stories, celebrate your unique experiences and help educate others about Down syndrome using the hashtag #DownSyndromeAwarenessMonth.

I’d also like to extend a heartfelt thank you to the following Down Syndrome Advisory Network (DSAN) members who have completed their term this year. Their hard work and insights have been invaluable:

Andrew Domahidy
Elise Romaszko
Kylie Scott
Lauren Murray

The DSAN is a group of people with Down syndrome who help us understand community needs and ensure our work reflects their voices. We’ll announce our new DSAN representatives soon.

Lastly, we send our best wishes to everyone taking part in the Scrapheap Adventure Ride which kicks off this week. Riders will be meeting in Candelo, NSW this weekend (October 4-6). Thank you to everyone who supports Scrapheap, which funds vital projects for people with Down syndrome in regional, rural and remote areas across Australia.

Sincerely

Darryl Steff
CEO, Down Syndrome Australia

This is a photo of Down Syndrome Australia CEO Darryl Steff

Support Scrapheap!

Scrapheap begins!

Scrapheap has officially begun! Riders in Sydney headed off yesterday, headed for the 2024 destination: Candelo, NSW.

You can support the Scrappers by donating to Scrapheap this year!

What is Scrapheap Adventure Ride?

The Scrapheap Adventure Ride is a unique fundraising event which involves motorcycle enthusiasts from all over the country purchasing a bike for no more than $1000 and doing it up for an adventure ride through the Aussie outback, all while raising awareness and funds to support people with Down Syndrome. Riders begin their journey at home or wherever they like but arrive at the same destination.

In 14 years the event has raised over $1,030,000 for the Down Syndrome community. Our next newsletter story talks about the most recent projects funded by all the money raised through Scrapheap!

Donate to Scrapheap

Advocacy

DSA advocacy update

Changes to the NDIS are taking place today, 3 October 2024. To understand more about the changes starting today - support lists, budget amounts & funding periods - please read this article:

NDIS changes

Look out for information about these Support Lists and what they might mean for our you via DSA's social media and other channels. If you have a Support Coordinator or Plan Manager, you can also reach out to them for help.

There are also big changes coming to Disability Employment Services (DES). From July 2025, these services will be available to people with a work capacity of 0-8 hours per week. This will open new opportunities for some members of our community. DSA are working through the details of these changes with the Department of Social Services and will share more in the lead up to July 2025. In the meantime we would love to hear your experiences with DES as these changes happen.

In other news, DSA has worked with Inclusion Australia on a submission for the review of Australia’s Disability Strategy (ADS). This strategy looks at important issues for the disability community outside the NDIS, including education and housing.

Read our submission

Next year, there will be an Independent Review of ADS. We’re keen to hear your thoughts on the strategy and outcomes in the new year.

If you have any advocacy questions, please email us at info@downsyndrome.org.au and mark your message "Attention: Advocacy."

Resources

This is a photo of the National Centre of Excellence conference presenters

The National Centre of Excellence conference recordings

Did you miss the National Centre of Excellence in Intellectual Disability Health's conference last month?

Good news – you can now watch all the session recordings online!

These sessions offer valuable insights into health for people with intellectual disability and are an excellent resource for healthcare professionals, support workers and carers.

Watch the conference recordings

The Centre’s next conference will be in May 2025 – stay tuned for more details!

This is a photo of a man with Down syndrome smiling next to his female carer

A dementia-friendly future for people with Down syndrome

In September, we marked Dementia Awareness Week by focusing on Young Onset Dementia and its impact on people with Down syndrome.

In our blog post, we discuss the challenges people face, the support they need and the vital work we're doing in this area. You’ll also find helpful information on awareness, prevention, diagnosis and support options.

Read the blog post

Opportunities

This is a photo of an older woman with Down syndrome next to a younger woman

Share your insights on aging and Down syndrome

We're working on a project to better understand the needs of older people with Down syndrome and their families. We want to hear from families and supporters about their experiences.

This survey is for families of people with Down syndrome who are 45 years or older, or those starting to think about aging issues.

We’d love your input!

Take the survey

This is a photo of several females in the audience at a confernence

VALID 2025 conference: Registrations open this month!

Registrations for the VALID 2025 Having a Say Conference will open this month!

This popular event is a fantastic opportunity for our community to gather, share experiences and make our voices heard.

Conference details:

Theme: Our Lives, Our Voices!

Dates: 28-30 January, 2025

Venue: Costa Hall, Deakin University, Geelong, Victoria

More details, including conference information in Easy Read is available on the VALID website.

Visit the VALID website

This is a photo of a lady with a notebook and a teenager with Down syndrome

Study: Healthcare support for people with neurodevelopmental disabilities

Australian Catholic University is looking for families and caregivers to share their thoughts on healthcare support for the sexual health and wellbeing of people with neurodevelopmental disabilities.

What to expect: You’ll take part in a one-hour online interview where you'll discuss the sexual health education and support needs of people with neurodevelopmental disabilities. This study aims to improve how these needs are understood and met.

Who can take part: You need to be over 18 and a family member or caregiver of someone with a neurodevelopmental disability, such as challenges with learning, communication or social skills.

If you’re interested or have any questions, please click the button below or email Claire at claire.lynch@acu.edu.au.

Learn more about the study

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

You are receiving this email because you have signed up for updates from Down Syndrome Australia. If you've had a change of mind, you can update your preferences by clicking Unsubscribe