10 April 2026
By Darryl Steff, CEO, Down Syndrome Australia
In recent months, much of the public conversation about the NDIS has focused on one word: sustainability.
News coverage has focused strongly on cost growth, budgets, fraud and redesign. This conversation matters. A sustainable NDIS is essential. But how we achieve that matters just as much.
Right now, sustainability is often being used to justify cutting supports, tightening plans and shifting risk onto people with disability and their families.
For many in our community, this is already having real impacts.
Reports show many participants are receiving reduced plans, sometimes by more than 20 per cent. Decisions are being made quickly, with a focus on consistency, rather than a clear understanding of individual needs.
Appeals are increasing. Participants and their families are exhausted. Uncertainty is becoming part of everyday life.
You cannot make the NDIS sustainable by making life unsustainable for the people who rely on it.
Down Syndrome Australia supports a strong and sustainable NDIS. It must deliver value for the community and confidence for taxpayers.
But sustainability cannot come from blunt cost cutting or decisions that do not reflect the reality of lifelong disability and changing support needs.
The Independent Review described the NDIS as an “oasis in the desert”, stepping in where mainstream systems like health, education and community services fall short.
That is not the fault of people with disability. And it cannot be fixed by reducing individual plans.
For many people with Down syndrome, the NDIS is not a luxury. It supports inclusion, independence and family wellbeing. For many, it is the difference between family stability and burnout.
Support needs are often lifelong and change over time. This includes ageing, mental health, and key life transitions such as education, employment and housing.
Down Syndrome Australia, as a Disability Representative Organisation, continues to work with government on reform. This includes submissions, co-design and collaboration with other organisations.
But reform must be done with the disability community, not to us.
Recent consultations on new planning and assessment approaches have raised serious concerns about transparency and safeguards.
We are concerned that speed and savings are being prioritised ahead of trust, evidence and human rights.
Once trust in the NDIS is lost, it will be much harder to rebuild.
If governments are serious about sustainability, we need to focus on what makes a real difference:
- Strong foundational supports and early intervention outside the NDIS
- Accessible mainstream services, so people are not relying on the NDIS alone
- Better workforce planning and regulation
- Genuine co-design, especially with people with intellectual disability
A sustainable NDIS is one that people understand, rely on and believe will be there when they need it.
Down Syndrome Australia stands ready to keep working with government to make this happen.
For interview requests or comment, please contact Down Syndrome Australia at media@downsyndrome.org.au