7 May 2026
Securing the NDIS must mean securing people’s lives and connections
By Darryl Steff, CEO, Down Syndrome Australia
The NDIS reforms announced on 22 April will shape the future of the scheme and the lives of the people who rely on it.
These changes must be done with people with disability, not to them.
In our response to “Securing the NDIS for future generations”, we join with other disability organisations to outline where reform could strengthen the system and where it risks causing harm if lived experience is not taken seriously.
For people with intellectual disability and their families, this is not abstract policy. It is everyday life.
Social and community participation are core supports
Social and community participation is essential. It is not an extra.
Supports that help someone join a group, build friendships, take part in activities and develop confidence are critical to wellbeing, mental health, safety and independence.
Cutting or narrowing access to these supports would undermine the purpose of the NDIS.
For many people, participation is the difference between isolation and belonging. When people are connected, they are healthier, safer and more confident. When these supports are reduced, people may still be “supported” on paper but excluded in reality.
That is not fairness. It is not sustainability.
Eligibility must remain clear and fair
Proposed changes to NDIS eligibility are a real concern.
People with lifelong disability, including Down syndrome and other chromosomal variations, need certainty.
Eligibility must remain clear, stable and explicitly account for long‑term outcomes and not just current function. It must also recognise the benefits of early support.
Reform must not reduce access by changing definitions that shift supports elsewhere without safeguards, or making systems harder to navigate.
Complex systems usually impact people with intellectual disability the most.
Foundational supports must add, not replace
Supports outside the NDIS can play an important role if they are properly designed and funded.
Early childhood, family and community supports should be easier to access and available earlier.
But these supports must add to the NDIS, not replace it.
If they become a substitute, people risk falling through the gaps the NDIS was designed to close. That shifts the burden back onto families and people with disability.
Decision-making must centre the person
People with disability must remain at the centre of decision-making.
They must be supported to make decisions in ways that work for them.
We risk eroding trust if we move away from individualised planning, replace conversations with rigid rules, or limit how people explain their needs.
People with intellectual disability may communicate in different ways and may need more time and support. Reform must accommodate this, not override it.
This is not resistance to change. It is a call for change that strengthens the NDIS by staying true to why it exists.
Securing the NDIS must mean securing connection, dignity and ordinary lives for people with disability now and into the future.
That is what sustainability looks like.
DSA Consortium Response to “Securing the NDIS”
Our response outlines each proposed NDIS reform and when it is expected to be introduced. It also includes our initial response to each item.