June 2024

This is a photo of a female with Down syndrome smiling next to a laptop computer. It also says Down Syndrome Australia June Community News

CEO update

Welcome to Down Syndrome Australia's (DSA) June e-news.

Last month, DSA was confirmed by the Federal Government as a National Disability Representative Organisation (DRO), leading a new consortium.

Starting 1 July, we'll represent people with Down syndrome and those with intellectual disability who have chromosomal variations.

This exciting announcement is an important recognition of our work and will ensure that the Down syndrome community is well-represented at the national level. We also look forward to collaborating with organisations that represent people with chromosomal variations. Together, we can continue our advocacy to the Federal Government and ensure positive outcomes for our communities.

Learn more about the announcement

To support our ongoing advocacy work, I also recently spoke at the Senate Committee about the new NDIS legislation. I highlighted the need for changes to improve it, such as the need to involve people with disability, supported decision making and considering the needs of each person. Read more about the NDIS reforms and our position on these in the next story.

Next week, I’m excited to join Michael, an advocate from Brisbane, to represent our community on an international stage at COSP 2024 at the United Nations in New York City. COSP stands for Conference of States Parties to the Convention on the Rights of Persons with Disabilities. It’s a fantastic chance to meet new people, share our work in Australia and learn from others around the world. Stay updated on COSP through our social media and next newsletter.

Sincerely

Darryl Steff
CEO, Down Syndrome Australia

This is a photo of Down Syndrome Australia CEO Darryl Steff

DSA advocacy in action

NDIS reforms

A lot has happened with the NDIS over the past year. The disability community contributed to the Independent NDIS Review in 2023, with the recommendations released in December. We shared our response to these recommendations in our last newsletter. Now we await the Federal Government’s official response, expected in late June or July.

In the meantime, the Government has introduced changes to the NDIS Act. These changes reflect some recommendations from the NDIS Review, but they also include new definitions and changes to plan and budget processes. DSA submitted feedback to the Senate Inquiry on these changes.

Read DSA’s Senate Commission Submission

(Please note that this document is not in an Easy Read format).

The Senate will debate the NDIS legislation changes and review the Senate Committee’s report. The outcome is still uncertain. If you’re concerned about the legislation, you can write to or call your local member of Parliament and share your thoughts. Find their contact information here.
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We’re continuing to talk with politicians and other disability organisations about these changes. We’ll keep you updated as things progress. Follow us on social media and keep an eye on these newsletters for the latest updates.

Upcoming events

Countdown to World Down Syndrome Congress!

In just over a month, the global Down syndrome community will gather in Brisbane to learn, celebrate, connect and drive positive change at WDSC 2024.

Full Congress program—now available

We're excited to announce that the full Congress program is now available. It features three days of engaging sessions, workshops and networking opportunities from July 9-12.

View the Congress program

Join us for the Congress dinner!

Still thinking about registering for Congress? Don't forget to add a ticket for the WDSC 2024 Congress Dinner on Friday 12 July. Your ticket will include a buffet dinner with Native Australian flavours and a refreshing drink upon arrival. More drinks are available to buy at the bar. It's a wonderful chance to meet new people from around the world and enjoy live music and a DJ to keep you dancing all night long!

Fun for the whole family!

Congress isn't just for adults—it's for the whole family. We've organised exciting childcare and school-aged programs to ensure kids of all ages, including those with Down syndrome, have a fantastic time while you enjoy every moment of the event.

We've partnered with the experts from Corporate Kidz Australia to provide safe, engaging and age-appropriate activities for children at the Congress venue. Activities will include arts and crafts, puzzles, books, puppets, dance, music, dramatic play, and more.

Explore childcare options

This is a banner image that says Join our free webinars for parents and supporters. It includes an illustration of four people and Down Syndrome Australia's and Good Things Foundations' logos.

Online safety webinar for parents and supporters

Are you a parent or supporter of someone with intellectual disability?

Join our free webinar: Helping People with Intellectual Disability Get Online!

Learn how to support people with intellectual disability to stay safe and confident online. Hosted by DSA and Good Things Foundation, we'll provide free resources, practical tips and answer your questions.

Webinar details

Wednesday 19 June at 7 pm (AEST): Register now

Thursday 20 June at 12 pm (AEST): Register now

This one-hour webinar is perfect for anyone supporting young adults with intellectual disability.

Find out more and explore resources, including training modules for people with intellectual disability.

View the Bridging the Digital Divide resources

This is a photo of a female with Down syndome smiling. She is sitting next to a man and across from a woman at a table.

Making Money Decisions Real webinar

Join Inclusion Australia’s Making Money Decision Real webinar on Wednesday 12 June, 11 am – 12.30 pm (AEST). This webinar is for families supporting people with intellectual disability.

It will be facilitated by Dariane McLean, Inclusion Australia’s Specialist Advisor, and Dr. Rhonda Faragher AO, Professor in Inclusive Education at the University of Queensland and DSA Board member.

Learn how to help people with intellectual disability build skills and understanding around money in a safe, supportive setting.

Opportunities

This is a photo of three males and one female with intellectual disability smiling at the camera.

Join the Learn and Lead Group!

Do you want to build your leadership skills and join a national group of people with intellectual disability?

We need 10 people to form the Learn and Lead Group we're organising for the National Centre of Excellence in Intellectual Disability Health.

Why join?

Be a leader: Help with important projects, share ideas to improve health services and support others with intellectual disability.

Build skills: Learn about advocacy, research, helping others and public speaking. Help create materials and interview people for jobs.

Be part of a team: Join a friendly group from all over Australia, meet new people and make friends.

Earn money: Get paid for going to meetings and doing other work.

To apply, you must:

live in Australia
be an adult with an intellectual disability
attend online meetings every two weeks.

We welcome people from diverse backgrounds, including First Nations, culturally diverse, rural, LGBTQIA+ and those who need communication support.

Applications open on Monday 17 June and close at 5 pm on Friday 26 July 2024.

Learn more about the Learn and Lead Group

For more information, contact Alison Richardson: alison.richardson@downsyndrome.org.au.

This is a photo of a teenage boy with Down syndrome using a computer

Survey: Down Syndrome Regression Disorder

For over a year, Down Syndrome WA has been working with families dealing with regressive symptoms. Together, they've made a survey to collect data for improving the diagnosis and treatment of people with regressive symptoms and Down Syndrome Regression Disorder.

If your loved one has experienced regressive symptoms, we encourage you to take the survey. Your input will help advocate for funding, research and support.

Take the survey

Keep an eye out for updates and resources to talk about these concerns with your doctor coming soon.

This is a photo of a man with Down syndrome drinking a cup of tea or coffee and smiling at the camera. He is with a women who may be his carer.

Share your experience of younger onset dementia

Last month we let you know about our partnership with Young People in Nursing Home National Alliance; Joint Solutions - Young Onset Dementia Project.

We heard from several people in the community whose family member has a diagnosis of Young Onset Dementia (YOD) that starts before age 65 and is more common in people with Down syndrome. We have connected with these families and started sharing information.

Next steps? In July we will be hosting conversations for small groups or individuals. We'll talk about things like diagnosis, planning care, managing changes and planning for the future. Our goal is to understand what support is available now, find any problems and plan how to make things better.

Some of our State and Territory member organisations will also be getting involved.

If you want to join in or learn more, please contact Rachel Spencer by 30 June 2024 at Rachel.Spencer@downsyndrome.org.au or on 1300 881 935

We know this topic can be hard for many people, and we're here to help and give you more information.

Help guide the work of the National Centre of Excellence in Intellectual Disability Health

The National Centre of Excellence in Intellectual Disability Health is running a consultation to help inform the Centre’s work plans.

There is an easy read survey and a standard English survey.

The Centre wants to hear from as many people and organisations as possible, including

People with intellectual disability
Supporters of people with intellectual disability
Health and allied health professionals
Disability professionals
First Nations people and people from culturally and linguistically diverse backgrounds

The survey will be open until 14 June.

If you find it hard to do online surveys, you can share your views through a phone call or focus group.

Please email nceidh@unsw.edu.au or call 02 9348 2265 if you want to do a phone call or focus group.

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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