September 2024

CEO update

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

The last month has been an interesting time for advocacy, with a focus of federal politicians on changes to the NDIS legislation. We have included an update on NDIS in our Advocacy section of this month's newsletter. The NDIS reform process will continue to be a priority for DSA, given the scale of changes. Minister for the NDIS, Bill Shorten, announced his retirement today so we expect to be working with new leadership in the future.

This month we are highlighting some of the incredible work happening that DSA is proud to lead and be involved with.

We take a look at the Pathways to Independence project which has just finished. You can check out the online courses and information videos on topics from relationships to human rights.

We have put together an article on all the great work happening in health and medical care to support people with Down syndrome. This includes a range of resources we think you might find useful, including the latest on Down Syndrome Regression Disorder.

Finally, we take a look at Scrapheap Adventure Ride which is kicking off again this October, as well as congratulate the winners of the Scrapheap Adventure Ride Grants. These grants support projects for people with Down syndrome in regional, rural and remote locations and we are very excited to see what our winners have in store.

Until next time!

Sincerely

Darryl Steff
CEO, Down Syndrome Australia

This is a photo of Down Syndrome Australia CEO Darryl Steff

Advocacy

NDIS legislation

The Government has recently spent a lot of time on changes to the NDIS Act.

The NDIS Act is a piece of federal legislation that sets out how the NDIS will function, and contains lots of rules that guide the NDIA.

Changes to the NDIS Act were passed by the Parliament on 22 August. It is important to know that nothing changes immediately, although some changes will start in late September. Please keep an eye on emails or communication from the NDIS directly if you have or are supporting someone with an NDIS plan.

One part of the NDIS Bill is to create a list of supports that people with disability can access. This will be called the NDIS Supports List. The Government shared some draft lists with a very short consultation period.

Down Syndrome Australia has, along with other Australian Disability Representative Organisations, written to Minister Shorten to express our concerns about several aspects of the NDIS Supports Lists. You can read more about this here:

Read: Letter on NDIS

DSA also prepared our own submission of what we think should be in the NDIS Support List.

The Government is currently finalising the list and DSA will continue to advocate for the best outcomes for our community.

If you want to get in touch, send an email to info@downsyndrome.org.au and mark it attention to advocacy.

Read: DSA on NDIS Supports List

Opportunities

Mental Health Research Project

This research project wants to know more about what helps people with disabilities to have good mental health.

We are looking for people with disabilities:

Aged between 18 and 45 years.
With lived experience of mental illness or poor mental health (current, previous or fluctuating).

The project is also looking for family members or informal carers of people with disabilities and lived experience of mental illness/poor mental health aged from 5 years to 45 years. The family member/carer will need to be aged 18 years or over to participate.

We want to talk with you about:

Factors that impact mental health journeys.
Australian Government policies and programs that impact mental health journeys.
How policies and programs might be improved to better support mental health journeys.

You will be paid up to $100 Visa card voucher for being in the research.

This research project is run by the University of Melbourne, partnering with:

Australian Federation of Disability Organisations (AFDO)
Deaf Indigenous Community Consultancy (DICC)
People with Disability Australia (PWDA)
Australian Government Department of Social Services

To register your interest contact:

Alexandra Devine, The University of Melbourne researcher

Email: alexandra.devine@unimelb.edu.au

Easy Read: Mental Health Project

Join Scrapheap Adventure Ride for 2024!

Scrapheap is back!

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!

Scrapheap 2024:

This year that destination is Candelo, NSW, where all ‘Scrappers’ plus family and friends will meet for a weekend of fun and entertainment at the Candelo Showground October 4-6, 2024.

Our target for 2024 is 100 riders raising $100,000 for Down Syndrome Australia.

If you’re not a rider, you can support the Scrapheap Adventure Ride and Down Syndrome Australia by sponsoring a rider or just donating to the cause.

Read: Scrapheap 2024

Support: Donate to Scrapheap

Congratulations!

Winners of the Scrapheap Adventure Ride Grants!

Down Syndrome Australia are thrilled to share the exciting projects that have been funded through the Scrapheap Adventure Ride Grants. Money raised from Scrapheap goes to projects that support people with Down syndrome in regional, rural and remote locations.

This year’s winning projects are designed to make a significant impact on the lives of people with Down syndrome, their families, and their communities. Thanks to everyone who has supported Scrapheap which makes these projects possible!

Take a closer look at the four projects and how they are making a difference:

Read: Scrapheap grant winners

Spotlight: health care

What is happening in health?

Want to know more about what is happening to improve health care for people with Down syndrome in Australia? We have you covered!

This article takes you through the big projects happening in health and medicine to support people with Down syndrome. We also include a range of resources on health you might find interesting, including new information on Down Syndrome Regression Disorder and an Easy Read on Coeliac Disease developed by the DSA Health Ambassadors.

Read: health care

New report

Progress Report: National Roadmap for Improving the Health of People with Intellectual Disability

The Second Annual Progress Report on the National Roadmap for Improving the Health of People with Intellectual Disability is out now!

DSA played a critical advocacy role in the establishment of the Roadmap, and continue to play a role in the implementation of this Roadmap.

Full Report

Easy Read Report

Spotlight: Pathways to Independence project

Resources and information to support independence

DSA has just wrapped up the Pathways to Independence Project. This project delivered workshops across Australia to 1,052 people with Down syndrome and 831 family members and carers.

You can read more about the project here, and explore the self-paced online courses and information videos (pictured above):

Read: Pathways Project

Learn: online courses

Watch: Information Videos

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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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