Submission 716
Senate Community Affairs Legislation Committee Inquiry
National Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026
As a parent of an adult son living with disability, I am writing to express my deep concern and disappointment about this Bill. I tell a personal story because the public discourse around the ‘unsustainable cost blowouts’ of NDIS has been manufactured to elide the personal and focus on the cost (and not the benefits of employment and quality of life).
Living with unbearable uncertainty
I have worked for 26 years to support and care for my son, navigating a range of complex systems with changing rules and policies, including prior to the NDIS and then since the implementation in WA of the NDIS. Recently, I was able to see my son settled in supported accommodation with NDIS SIL funding and I began to believe that he might have a bearable quality of life in the future, including after my death.
My peace of mind has been totally destroyed by the recent Budget announcements around the NDIS and the proposed changes to the scheme. When my son asks me, ‘who will look after me when you are dead’, I no longer feel able to reassure him that NDIS funding will ensure he has shelter, food and support – that he will be safe. I ask you to imagine how this feels for me and for my son.
Removing support
In my view, it is disgraceful that this Bill proposes removing NDIS funding from 160,000 disabled people. The budget threatens to take away the lifeline of some of the most disadvantaged people in our community, without warning and without any other support available.
For people like my son (with multiple disabilities that interact in complex ways), there are no services available other than those provided by the NDIS. Even if new services are created in each state and territory, these will take years to develop and are unlikely to meet the needs of people who have been recognised as needing NDIS funding. Without NDIS funding, my son and others like him are likely to be homeless, in a public hospital bed, in prison, or (and I’m sorry to have note this, but it is a fact), suicide statistics – that is the reality of our lives. All of these options are cruel and all are more costly than the NDIS. This Bill will result in hardship and cost-shifting, not cost-cutting.
Reducing support
I am deeply concerned about proposals to reduce the Community Access and Capacity Building funding. My son’s highlight each week is when a support worker takes him to the local swimming pool and then the local library. He is unable to go into the community alone; he has no friends; he is not capable of participating in paid work or
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study. If my son’s Community Access hours were to be reduced or removed, this would effectively be like locking him into his bedroom all day. People with disability can and should have a better quality of life than that. Going for a walk in the park, choosing a milkshake flavour at a local café, going to the library and the pool – these are the small pleasures that my son, and others like him, enjoy. Surely, we can’t be a society that denies these to our most disadvantaged individuals?
Without the long-term input of a Behaviour Support Practitioner, psychologist and occupational therapist, my son would struggle more with life and would be a risk to himself and others in his house. Every day it is a struggle for him to undertake basic tasks in his house. Over time, he is beginning to be able to understand his emotions and start regulating them, improve his relationships with others, and behave in more appropriate ways in the community. Because much of his funding is 1 to 3 (ie one support worker to three clients), he has to share a house with at least two other people (strangers in effect) and it is important that they all learn to share that space. Without professional input, this would be impossible.
The proposal to rely more on group activities and mainstream community participation is completely unrealistic for some people with disability. In my son’s house, even trying to get all three participants together for an evening meal once a month is very challenging – the complexity of the reality of these situations makes group activities that work rare. As for mainstream activities, my son can only do things like visit the local pool with a support worker. Attending on his own is totally impossible: if forced to do this, I’ve no doubt he would be in danger himself or put others in danger. This is the reality of complex disability.
Reasonable and necessary
The current proposal to increase executive discretionary powers and place ‘financial sustainability’ at the heart of decision-making is deeply concerning. In effect, this alters the practical meaning of ‘reasonable and necessary supports’, moving from the original rights-based model to a capped funding model driven by financial considerations. This is a bit like deciding that you will feed your hungry children only what you think they should cost you and not what a child needs to thrive. Of course, value for money services should be prioritised, but that is service provision and administrative issue, not a reason to reduce the safety of the lives of disabled people.
Automated cost-cutting
I do understand that a government needs to keep a check on spending and that the NDIS is costing more than projected. However, cutting funding from individual Plans via an automated system is not the best way to handle this. There are many ways that I can imagine shaving the cost of the NDIS through improving the overall system, not through the magic of ‘one size fits all’ (which we know doesn’t work) or a ‘robo-disability’ system
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(which we can predict won’t work) but rather through harnessing the expertise of the individuals and families using NDIS services.
In summary
For years, I have provided (free) care for my son, and I continue to provide emotional support and act as his legal guardian and administrator and NDIS nominee. When I am too old to manage this, there will be no magic fairy to take over this role. My son will then be in the position of many people with disability: on his own. Relying more on informal care is totally unrealistic. I spent years suffering burn out and high stress (and physical harm) before we found accommodation for my son. Families already do what we can; we cannot do more.
My son lives on a Disability Support Pension, over 50% of which goes towards the rent of his bedroom. Once he has paid for his medications, there is only just enough for his basic food costs. That once-a-week milkshake or slice of cake is his one ‘treat’. This life is hard enough for him – please don’t make it even harder with these changes.
Thank you for reading my submission and for taking the time to reconsider these harsh and unfair proposed changes.
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