National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3252
To whom it may concern –
I am writing to express concern re: the upcoming changes to the NDIS act. I have many concerns, but especially about the way the need to reduce costs is being disproportionately laid on families who care for people with disabilities.
The worst change is the plan for the minister to be able to reduce funding across all plans by a specified amount. This is irresponsible and the impact on families, some of whom already have insufficient funding (my daughter included) in these categories, will be immense. This change is being doubled up with the removal of change of circumstances reviews in most situations, which puts people in a really challenging situation through periods of change and fluctuating functional capacity.
My daughter has ASD lvl 2 and is high verbal but struggles with huge emotional dysregulation and other self-regulation challenges, cannot relate well to peers or people outside the home, and requires support for most aspects of her daily functioning. She has had a very challenging year this year, only able to be at school for a maximum of 2hrs ea day for the last term, and I have often needed to attend her school to support them with managing her behaviours to the extent that I am not able to work or study and am in burnout. Her funding is not sufficient, and will only get worse as these amounts reduce across the life of her plan (halving in year three, before other reductions are taken into consideration).
She only has enough funding for barely half of the therapy that she requires, which flows on in terms of family impact. This is how marriages break down and parents end up with their own severe mental health load, potentially becoming unavailable to their children. I know the NDIS are opposed to teens having enough support worker funding, but the increasing opposition to this means that families with a teen with disability related needs cannot get respite (extended family members are not able to manage her behaviour, nor friends). The profound lack of comprehension on how these decisions impact on the real families is heart breaking.
I also want to speak to the impact of all this on the siblings of children with significant disabilities. Our son is sidelined and gets the parenting dregs, because all of the primary capacity is diverted towards the child with disability. Failure to recognise the profound impact of this assumption that all parents are able to carry the bulk of their child’s disability needs is incredibly sad.
I find I increasingly have no hope for the future when it comes to available support, and I feel scared of every interaction with NDIS or LAC. I see no signs of additions to Medicare funding options, and in an outer regional area the flow of effects will be huge. We already have a dearth of paediatricians and other specialists, and we know people who have often been required to travel 5-7hrs to see anyone even in the public system. Families need hope, support and the ability to forward plan for their children’s needs.
I appreciate that public funding is a complex thing, but cutting funding doesn’t fix the issues, especially where other public funding has been left without changes. Additional taxes, especially on huge companies with lobbies, may be politically less challenging, but that must
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3252
surely be because families with disabilities lack the energy and power to make enough noise, so it makes us the easiest targets.
The further removal of supports for so many people who are on the NDIS is horrific. The very real impact of the NDIS when it has worked well is that support needs for many have been decreased because the right supports will often have that effect. However, removing these safety net options will not cure these disabilities, but rather will shuffle the flow on impacts of these challenges into underfunded public systems that are unable to cope with these complex situations nor able to respect the needs and wishes of people from a variety of cultural and language backgrounds. The need for dignity through choice and control is being completely ignored, and I can only see that this will result in the degradation of many through homelessness, family break down and sadly suicide in many cases. It is hard enough to keep going even with things as it is, let alone as it gets worse in the coming years.
Most Australians will either face significant impairment or care for someone with significant impairment at some point in their lives. Surely the government could have used their time and energy to demonstrate the social benefit for all Australians in making sure that everyone is cared for, instead of feeding the narrative that apparently burnt out, exhausted parents of children with disabilities or adults with profound mental health and other impairments are somehow stealing from the tax payer. I’m sure some people have, but most of us are just trying to live half of a normal life. We’re not looking for a leg up, we’re just trying to stay afloat.