Angelman Syndrome Association Australia

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The DSA Consortium welcomes the decision to extend the NDIS Bill Inquiry by 8 weeks. This means the Bill will not be debated again until after 14 August.

These proposed changes could affect hundreds of thousands of people with disability, families and carers. The extension gives the Committee more time to consider the concerns raised by the disability community and the evidence provided through the inquiry.

Thank you to everyone who has shared their experiences, concerns and expertise. Your voices have helped ensure these issues are being heard.

We are also pleased to see some changes agreed to, including:

– greater protections around changes to support budgets
– increased transparency around automated decision-making
– stronger protections to ensure people cannot be forced to undergo restrictive practices or treatments to access the NDIS

These are positive steps, but there is still more work to do.

Many people in our community remain concerned about the proposed reforms and what they could mean in practice.

We will continue listening to our community and sharing information as the Bill progresses.

We will also keep advocating for the rights of people with intellectual disability, families and carers.

ADVOCACY UPDATE:
A lot is happening in disability reform, and our community’s voice matters! We are making sure it is heard.

ASAA has been actively advocating in response to the Senate Inquiry into proposed NDIS legislative changes. Alongside our own submission, we’ve proudly contributed to sector‑wide submissions through our Disability Representative Organisation (DRO) Consortium and the Neurological Alliance Australia.

These submissions reflect the lived experience, concerns, and hopes of families across Australia. We invite you to read them, share them, and stay engaged as reforms progress:

ASAA Submission: https://bit.ly/4uCijfR

DSA DRO Consortium Submission: https://bit.ly/3SMfFXF

Neurological Alliance Australia Submission: https://bit.ly/4aABX4

Breaking news: The Senate Committee has just announced that its report, due today, is now expected on 23 June 2026!

Thank you Darryl and our Down Syndrome Australia Consortium for being a fierce voice for our community and saying what needed to be said at the Senate Committee public hearings 🙏🏻🫶🏻

More to come….

Today, DSA CEO Darryl Steff appeared before the Senate Community Affairs Legislation Committee to discuss proposed changes to the NDIS and DSA's submission to the Inquiry.

These proposed changes are the biggest reforms the NDIS has seen. That's why it's important that people with disability and the organisations that represent them are heard.

In his opening statement, Darryl said:

"As a Disability Representative Organisation, we represent people with chromosomal variations including Down syndrome – people who have lifelong and permanent disabilities - the exact people that the NDIS was designed to support.

So it is very concerning to see the impact this proposed legislation would have on our communities.

We do not support the legislation in its current form, but this is not about stopping reform, it’s about doing it properly.

This is the biggest reform the NDIS has seen, and those most affected were not consulted.

This legislation prioritises financial sustainability, but sustainability can’t come at the expense of safety and rights."

People with disability must be at the centre of decisions that affect their lives.

We'll continue advocating for reforms that protect the rights, safety and wellbeing of people with Down syndrome and other people with disability.

Read our submission: https://buff.ly/yTLF2TN

This National Reconciliation Week, the Angelman Syndrome Association Australia proudly stands with Aboriginal and Torres Strait Islander communities. This year’s theme, "All In", reminds us that building a fair future requires all of us to commit to making active, meaningful inclusion a reality. We want to take this opportunity to celebrate and deeply acknowledge our Aboriginal and Torres Strait Islander Angelman families.

True reconciliation means ensuring our families have access to culturally safe care and support.

ASAA is committed to listening, learning, and collaborating to remove barriers to care, inclusion and support for our First Nations families.

Let's walk this path together, today and every day.

Today ASAA and FAST Australia made submissions to the Australian Goverment Senate Inquiry into Epilepsy. We acknowledge all the families who shared their stories and insights.

Angelman syndrome is a rare disease with associated rare forms of epilepsy….but did you know that collectively our rare epilepsy “DEE”cohort is 1:590?!

Thank you to our friends at Genetic Epilepsy Team Australia - GETA for this powerful video submission.

Trigger warning: Moves your heart and your head! 💙

“Developmental and epileptic encephalopathies (DEEs) are the most severe forms of epilepsy. They are lifelong, multi-morbidity conditions involving intellectual disability, communication and behavioural challenges, and significant medical complexity.”

DEEs - Devastating, Deadly and Disrespected This film was produced by Genetic Epilepsy Team Australia (GETA) at the 2026 GETA Conference in Brisbane to accompany GETA's submission to the Senate Community Affairs References Committee inquiry into epilepsy in Australia. Developmental and epileptic encephalopathies (DEEs) are the most severe for...

Yesterday, the Government introduced the new NDIS legislation in Parliament. On the same day, the Senate referred it to the Committee for Inquiry.

ASAA, as a proud member of the Down Syndrome Australia DRO Consortium, added our voice to the growing concern about the proposed legislation, and the short timeframe for the Senate to consider, report and help shape the legislation.

"We are deeply disappointed by the extraordinarily short timeframe of approximately one month for the Senate Inquiry to report. There are grave doubts that this will allow proper scrutiny of legislation, with major implications for the well-being, rights, and supports for hundreds of thousands of people with disability, families and carers across Australia."

Join our membership base to increase our voice and our influence at this critical time!

https://www.downsyndrome.org.au/blog/2026/05/15/joint-statement-concerns-over-rushed-ndis-reforms/

Joint Statement: Concerns Over Rushed NDIS Reforms Down Syndrome Australia Consortium joins other Disability Representative Organisations (DROs) are united in calling for a robust Senate Inquiry into the NDIS Reform Bill introduced by the Australian Government yesterday.

Rare Voices Australia have recently released the first round of resources in their nationally co-designed Rare Disease Disability Toolkit. https://rarevoices.org.au/toolkit-page/

The Rare Disease Disability Toolkit:
🤝Includes new peer-to-peer supports.
🗣️Builds capacity in disability rights and self-advocacy.
🛣️Supports people to better access and navigate disability and other systems (such as health, education and employment).

Each resource includes a main guide and extra tools to help you speak up for yourself and use together with your support team. There are currently 3 Guides with practical resources around Community, Health and the NDIS.

· COMMUNITY GUIDE (Air Travel):https://rarevoices.org.au/.../Guide...
· HEALTH GUIDE: https://rarevoices.org.au/.../Guide...
· NDIS GUIDE: https://rarevoices.org.au/.../Guide...

More resources will continue to be added to the Toolkit over the coming months.

💙 MOTHER’S DAY GIVEAWAY 💙

This Mother’s Day, we’re celebrating the incredible mums, carers and special women in the Angelman syndrome community who give so much love, strength and support every single day.

To show our appreciation, we’re giving away a beautiful hamper gifted by an close Angelman connection filled with goodies to one deserving woman 🌸

To enter:
💙 Comment below and nominate an amazing mum, carer, grandmother, sister, aunty or friend connected to the Angelman syndrome community — and tell us in 25 words or less why they deserve to be spoiled this Mother’s Day.

We know the journey can be filled with challenges, but also so much love, resilience and joy. This giveaway is our small way of celebrating the incredible women who make such a difference every day 💙

Winner drawn at random and announced on Sunday 10th May at 9pm AEST.

💙 Congratulations to Dimity Morris who was randomly selected (see video in comments) on winning the gift pack 💙

Want to hear about the proposed NDIS changes?
Join the PWDA National Community Forum!

When: Thursday 7 May 2026

4:00pm – 5:30pm (AEST – NSW, QLD, VIC, TAS and ACT)
3:30pm – 5:00pm (ACST – SA, NT)
2:00pm – 3:30pm (AWST – WA)

Where: Online via zoom (Access link will be sent following registration)
Cost: Free
Register now - https://forms.pwd.org.au/civicrm/mailing/url/?u=24138&qid=1953315

RESEARCH OPPORTUNITY! SIBLINGS

Researchers at are testing an online, group program called SIBS-ONLINE for the first time in Australia.

They are looking for siblings and parents of people with developmental and epileptic encephalopathies (DEEs) to participate in a research study. This includes Angelman syndrome!

You’re eligible if you:
• Are a sibling (aged 12-18 years) or a parent of a patient with a DEE who was diagnosed at least 6 months ago and lives at home
• Have access to a phone, laptop or device with a camera and internet connection
• Can give informed consent and speak English

If you are interested, please access this link to our website with more information: https://www.unsw.edu.au/.../mental-health-and.../sibs-online

You can contact the research team at [email protected] or Maddison Smith (PhD student) at [email protected]