July 2024

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CEO update

Welcome to Down Syndrome Australia’s July e-news!

Last month, I had the honour of representing our community alongside Michael, an advocate from Brisbane, at COSP 17 at the United Nations in New York City. Down Syndrome Australia (DSA) attends the UN Conference of State Parties (COSP) to:

Share important issues for people with Down syndrome and explore improvements
Learn from other countries about disability rights
Highlight our work in Australia
Discuss inclusion for people with disabilities
Connect with people from around the world

We were pleased that the Australian Government supported our attendance. Michael was one of nine delegates from disability organisations funded to participate, and Minister Bill Shorten led the Australian delegation, illustrating the importance of this event.

We had the opportunity to present on topics from Employment to our Advisory Network. Michael was privileged to be a panelist on a roundtable discussion on Employment where he asked for employers to "Walk the walk, not just talk the talk".

Insert reflections/highlights

Next week marks an exciting milestone for DSA and the broader Down syndrome community. We are proudly hosting the World Down Syndrome Congress 2024 in Brisbane from July 9-12. This event is the result of many years of hard work and planning. We’ll gather with nearly 1,000 delegates to learn, celebrate, connect and drive positive change.

Our 200+ speakers, including leading experts and advocates from diverse fields, will deliver thought-provoking and practical sessions for people with Down syndrome, families and support people, and professionals across five streams:

Health and therapeutic advances
Education and employment
Advocacy and social inclusion
Family life
Personal development

For those joining us, we’re excited to share in the learning and celebrations with you. For everyone else, keep an eye out for stories, photos and videos of the event and speaker insights in the coming months.

In case you missed it, we’ve just launched our June 2024 edition of Voice – Breaking Down Barriers. We hear from people with Down syndrome who are breaking down barriers and overcoming assumptions about what they can and can't do.

Read the June 2024 edition of Voice

Sincerely

Darryl Steff
CEO, Down Syndrome Australia

This is a photo of Down Syndrome Australia CEO Darryl Steff

Opportunities

This is a banner image of a lady with Down syndrome holding a sign that says "Survey". She is smiling.

We want to hear from people with Down syndrome!

Help us by doing a short survey.

In this survey, we ask questions about

finding information
getting support.

We want to know about:

what works wells for you
what does not work well
any problems with getting the right support.

This will help us to provide the right support and information for people with
Down syndrome.

If you have questions, contact Down Syndrome Australia:

Phone: 1300 344 954
Email: info@downsyndrome.org.au

The survey is in Easy Read. It can take about 10 minutes.

You can ask someone you know to support you.

This survey is open until the end of July 2024.

Take the survey

This is a photo of four people with intellectual disability smiling. Three males and a female

We need you! 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 close at 5 pm on Friday 26 July 2024.

For more information, contact Inclusion Lead, Alison Richardson on 0438 926 035, alison.richardson@downsyndrome.org.au or via the National Relay Service.

(photo credit: Council for Intellectual Disability NSW)

Apply for the Learn and Lead Group

This is a photo of a teenager with Down syndrome speaking with a female psychologist

Research opportunity for people with intellectual disability

Pearson, a global education and assessment company, needs people with intellectual disability to join a study about thinking, memory and everyday skills. This study will help Pearson make Australian versions of tests made in the USA.

What you will do:

Session 1 (2 to 3.5 hours): Solve problems, do puzzles and answer questions.
Session 2 (1 to 2 hours): Do memory tasks.
Session 3 (30 minutes): Do practical tasks like telling time and counting money.

What you get:

$100 gift cards for completing sessions 1 and 2.
$50 gift card for completing session 3.

Learn more and sign up

If you're selected, Pearson will find a psychologist near you to do the study with you.

New resources

This is a photo of a teenager with Down syndrome on a laptop. His mum is sitting next to him.

Pathways Online Learning for people with Down syndrome

Exciting news! We've just launched self-paced online courses for people with Down syndrome and intellectual disability.

With Pathways online courses, you can:

learn new skills
be healthy
be independent.

The learning topics are:

Relationships
Decision Making
Community Participation
Using the NDIS
Self Advocacy
Staying Healthy.

How does it work?

You need a computer or a tablet, the internet, an email address.

Choose a course that you want to learn about.

Join the course by giving your email address.

You will get an email with a code. Use this code to join the course.

Each course is short. It will take less than 1 hour to do a course.

Get started with Pathways Online Learning

This is a photo of a male and female with Down syndrome smiling.

Pathways videos for people with Down Syndrome

We're thrilled to launch our new educational video series for people with Down syndrome, featuring their voices and perspectives.

These videos cover essential topics, including:

What is consent?
What are human rights?
What is a community?
What is the dignity of risk?
What is a self-advocate?
Reasons to be healthy
Making my own decisions
Information about the NDIS

Created as part of the Pathways to Independence Project, these videos were made possible with the help of government funding from the Department of Social Services.

A big thank you to our amazing community members who took part in the videos.

Watch the Pathways videos

This is a photo of a young man with Down syndrome baking cookies in a kitchen

Easy Read health resource: Coeliac Disease

People with Down syndrome are more likely to have coeliac disease than the general population.

To help everyone understand this better, our Health Ambassadors created an Easy Read resource that explains:

What coeliac disease is
How it develops
Common symptoms
How to get tested

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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