National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1128
In all the debate about the NDIS - the expense, the rorts, the dysfunction - a fundamental point has been forgotten: why did the then Labor government go to all this trouble and expense to create it?
The Productivity Commission Report summed it up in one sentence in 2011:
While Australia’s social security and universal health care systems provide an entitlement to services based on need, there is currently no equivalent entitlement to disability care and support services.
Medicare is an article of faith for our national identity. And for a while there, the NDIS was the equivalent of a Medicare card for people with disability.
But the devil is in the detail, and there have been enormous unintended consequences arising from poor design and oversight. No reasonable person would disagree that the NDIS is in need of reform.
However, these amendments do nothing to improve the poor design of the scheme. They merely paper over bad design with other, equally poorly thought through, measures.
They also entirely remove the original intent of the scheme - entitlement to services based on need.
And the unintended consequences of these measures are arbitrary, cruel and may in fact be more expensive.
Other, much smarter people than me can give provide a thorough commentary of the problems with this proposed legislation. I would like to present just one example from our lives that demonstrates the perversity of the outcomes that will result if these amendments are passed.
Part 4 : Section 34(A)
As the Minister has already informed us, the target of this instrument is Social and Community Participation, where all budgets will be limited to $26,000.
There seems to be a fundamental misunderstanding about support oSered under Social and Community Participation budgets. It is not all about going to cafes or the movies.
Day programs (group and centre-based programs) are funded in this category. These usually run for 6 hours a day, up to five days a week. People with disability are supported to engage in work, skill building, exercise and health or creative endeavours.
For us, it is the only opportunity my daughter has to work, socialise, learn and generally have as good a life as we can create for her. When she isn’t able to attend, she is withdrawn, miserable, and eventually depressed.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1128
In addition to providing engaging and meaningful activities for people with disability, day programs oSer a reliable support that allows informal carers (mostly mothers) to access the workforce.
Unintended financial consequence
If this legislation is passed, I (and many other unpaid primary carers) will be forced to leave the workforce and apply for the Carers Payment. My daughter is profoundly intellectually disabled, has ASD3, and uncontrolled epilepsy. She requires 24/7 support, the majority of which I provide unpaid.
• Current cost of my daughter’s day program per year $48,000 • Savings to NDIS budget after funding reduced to $26,000 $22,000 • Carers Payment pre year (approx.) $31,000 • Additional cost to Australian taxpayer: $9,000
Two lives totally ruined, for no reason other than to increase the cost of providing care for my daughter.
And when I completely burn out, which is inevitable, I would be forced to apply for Supported Independent Living (SIL) for her, which would cost at least $220,000 per year to support her in a SIL house with two other participants.
Additional cost to the Australian taxpayer: $198,000
All to attempt to save $22,000.
On a more general note, please bear in mind that at the current price guide, $26,000 is seven hours per week of 1:1 community access. This eSectively means that many people with disability will only be able to leave their house for seven hours per week.
This is unbelievably cruel. This is the same amount of time that the general population were allowed out of their house per week during COVID.
I simply cannot believe that anyone would think that it is acceptable to force someone to live the rest of their lives in lockdown purely on the basis that they have a disability.
I implore a total re-think of this punitive, perverse and heartless approach to ‘fixing’ the NDIS. A constructive, creative and collaborative debate that provides the opportunity to identify problems in advance has a much greater chance of actually delivering the desired outcome. The NDIA needs to acknowledge that the experts in this complex system are in fact the participants, their carers and service providers who have used it to create fantastic outcomes for people with disability, and who have created lives that were barely imagined in 2012.
Making plans about us without us is not just discriminatory, it is stupid. And the worst unintended consequence is that it dooms the NDIA to failure. Again.