Submission 882
27 May 2026
Thank you to the members of the Community Affairs Legislation Committee for considering submissions on the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. I am making this submission in my personal capacity as a parent and carer of an NDIS participant, however I also have extensive experience of contributing to parliamentary inquiries in my professional capacity, and would be happy to expand on this submission if helpful.
I note the short timeframe allowed for this inquiry has limited my ability to comprehensively consider the Bill. My submission has been written hastily and I have not had time to structure the submission by reference to the order of proposals as set out in the Bill. I imagine many other members of the disability and carer communities have been unable to submit at all because of time constraints. In addition, the Bill and Explanatory Memorandum are technical and not accessible to all people, which is not well aligned with the goals of the NDIS.
I am a mother to two children and their primary carer. My son, who is 14 years old, is an NDIS participant. He joined the scheme in 2018 through the early intervention pathway before later transfer to the mainstream scheme. My son lives with an intellectual disability, developmental and encephalopathic epilepsy (DEE), severe reflux disease, anxiety, and challenges in communication, attention, gross and fine motor skills. His impairment is permanent and he requires constant supervision for his safety. He is a Year 8 student in a multi-categorical class in the support unit of a NSW public high school.
As a person highly engaged with the NDIS due to my family circumstances, and in my work as a human rights law academic, I am aware that reform is required to ensure that the NDIS can continue sustainably and provide the supports that people with disability in Australia deserve. However, I am concerned that the ways in which reform is currently being pursued risk creating new challenges and exacerbating existing challenges that will make life harder for people with disability and their carers. In this submission, I will identify some of these concerns by reference to the provisions of the Bill.
Family support
Section 73 of the Bill proposes the inclusion of sections 1G-1K after subsection 34(1) of the NDIS Act. These provisions appear designed to ensure that support work is not funded for disabled children in circumstances where it would be reasonable to expect that parents will provide the required support. I would ask members of the Committee to consider the following questions in relation to these provisions, and hopefully address them to the proponents of the Bill:
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Is there an evidence base to indicate that support work is being funded in circumstances where parents could and ought to be providing adequate care for their disabled children?
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Is the NDIA properly resourced to make the assessments called for by these provisions in ways that are sensitive to the circumstances of children with disability and their families?
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What are the community and informal supports that are to be considered as potentially preferable to the provision of funded support work? If these supports exist, are they genuinely available as alternatives to funded supports for any participants who will see their funding reduced?
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If funded supports are removed from participants’ plans without consideration of their circumstances and their family’s circumstances, what will be the flow-on effects for families in terms of their capacity to maintain employment? Will they suffer from stress and other negative outcomes of struggling to maintain the already considerable load of work, family life and care for a person with disability, potentially increasing demand on the health and mental health systems? Will their incomes reduce, putting financial pressure on the family?
To put these questions in context, I would like to mention a few relevant aspects of my family’s experience:
My son lives with constant risk of seizures which require treatment with emergency medication by a person capable of safely administering that medication, confident to do so in a stressful situation, and physically able to support a growing young person who has no capacity to manage his body during or immediately after a seizure. For that reason, and with the addition of the other impairments my son lives with, our family has no ‘informal supports’ capable of providing the care he requires. My husband’s family live in Ireland. My mother is 85 years of age. My siblings and their partners all work and have their own children to care for. Our friends also work and care for their children. We live in Newcastle, which is a well resourced city, and yet I have never come across a community support resourced to provide safe and adequate care for my son outside of school hours. This is especially the case now that he is at high school, because out of school hours care services are not available for children beyond primary school (although my experience was that OOSH care was never genuinely available for my son because insufficient care ratios were afforded). Families of NDIS participants often have other family members who live with health and disability themselves. In our family, I am the only person who does not have a mental health or neurodevelopmental condition. My husband recently survived a sudden cardiac arrest and has a long recovery period ahead. My son’s most recent plan was written in 2022. Since that time I have not received so much as a phone call from an LAC. The plan has been rolled over repeatedly and I have recently been informed that another rollover is imminent. I have largely given up trying to communicate with the NDIS, instead preferring to at least maintain the supports he currently receives as they are vital for his wellbeing and development. However, this means that the information that the NDIA holds about my son and our
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family is woefully out of date. If decisions are made on the basis of that information, they will not be properly made.
Support determinations
The Bill proposes a new s34A that would give the Minister the power to impose a percentage reduction in funding for a specified group of supports. As worded, this new power will undoubtedly put NDIS participants in a position where they receive fewer supports than they have been funded for, and/or where they will need to co-fund those supports. The proposal puts the burden on people with disability to reduce the cost of the NDIS. There is no parallel proposed reform aimed at reducing the cost of the supports.
The Minister has announced that he intends to reset the social and community participation funding under this new proposed power, with cuts to plans to be made from October 2026. This stated intention means that the cuts will be made for many existing participants outside of the normal planning process, meaning that individual circumstances will not be considered and – undoubtedly – some participants will be grossly disadvantaged by this change.
This proposed reform is being framed as a means of ensuring that support work is genuinely funded to enable community participation. In this context I would like to share my family’s experience. Support work funding has been essential in opening society up for my son (the goal as noted by the government: https://www.health.gov.au/our-work/ndis-legislation changes/amendments/securing-the-ndis-for-future-generations?language=en). He receives funding that enables two hours of support on four weekdays after school. He has a team of three young male support workers who he identifies as trusted friends and with whom he can share interests. They visit community facilities, participate in sports, play games and provide highly beneficial social contact that a 14-year-old child without disability would otherwise have access to in their daily life. These are the only eight hours each week when my son has the chance to truly choose how to spend his time, without parental or teaching supervision. Of course, his support workers provide that supervision, but the nature of the relationship is that they can provide it in a way that approximates friendship. The support he receives from this funding cannot be replicated by the creation of a group program. He also spends much of the rest of his life in disability-specific settings, at school and in his sporting programs. I take from the government’s proposal that we should welcome him being required to instead attend ‘genuine participation activities’ hosted by community organisations. For that to be the case, those programs should already exist and have demonstrated capacity to provide appropriate support to people with disability with high support needs. I see no evidence in my community that this is the case.
I have heard the Minister raise issues with the performance of specific support workers, for example a case in which a person in a wheelchair suffered harm because their support worker failed to pay appropriate attention and instead was using their phone. I hope the Committee will consider if this kind of anecdotal evidence is the substance of the evidence base for making a change to the NDIS as a whole with significant potential impact on many participants. I believe it is possible that the problem – where it may exist – is one of regulation of support workers and agencies rather than a problem that ought to be addressed
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by depriving NDIS participants of supports that enable them the dignity to live their lives with choice and control.
Ministerial decision-making
The Bill refers to multiple situations in which power is to be delegated to the Minister to use legislative instruments and delegated rules with significant impact on NDIS participants. I hope the Committee will consider the appropriateness of these proposed reforms and raise questions about whether decisions with significant and potentially damaging impacts on people with disability can be properly made by the Minister in these ways, or whether such decisions are properly reserved for Parliament.
Functional capacity
The Bill proposes a definition of functional capacity in s9B of the Act. I wish to flag some concerns with the Committee at this stage:
An assessment tool has not yet been developed, but key stakeholders are concerned that decision-making may become automated or otherwise reliant on methods that do not take into account all relevant allied health and other evidence. Based on my family’s experience, I believe this is a legitimate concern. Several years ago, my son’s plan was severely cut without an appropriate evidence base. I went through appeals processes through to the then-Administrative Appeals Tribunal, and eventually his funding was restored in full. Throughout this process, it was evident to me that more money was being spent on lawyers representing the NDIA than the amount that had been stripped from my son’s plan. The evidence I was able to present at the planning stage was of the same quality and relevance as the evidence I gathered to support my appeals, but for unknown reasons I only achieved a positive outcome for my son after spending nine months working through those processes. In that time he missed out on supports he needed and I was considerably taxed in terms of time and stress. I do not understand why the government is seeking to legislate elements of its plan to assess/reassess NDIS eligibility based on functional capacity, while core aspects of that assessment process are yet to be developed. Surely this risks making decision making worse rather than better under the NDIS. Our family is very well resourced relative to many families who interact with the NDIS. I hold a PhD in law and my husband and I are both employed in professional jobs. I am concerned that the proposed Bill seeks to reduce consideration of a person’s environmental and personal circumstances. Throughout my son’s participation in the NDIS, particularly when we needed to appeal his plan outcome, it has been evident to me how advantaged we were in relation to (I assume) many others required to interact with the NDIA. It appears highly risky to reduce consideration of factors that could have major bearing on the support needs of children seeking to access the NDIS.
Maximum funding for specific supports
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Section 68 of the Bill proposes that determinations may be made that specify maximum funding levels for supports or classes of supports. An example would be to impose a limit of 12 psychology sessions per year for a child with intellectual disability.
My family has experience of this type of limit being imposed in an individual plan. In the process of finalising my son’s plan during our AAT appeal, we felt compelled to accept the NDIA’s proposal for a maximum of 12 psychology sessions in my son’s plan, along with the addition of a considerable amount of funding for behaviour support, which had not been requested by us or by my son’s allied health professionals. It was made clear to me that this was an attempt to constrain the amount of mental health support provided under the NDIS, because such support is also – technically – afforded by Medicare. Of course, Medicare subsidised psychological support is much more expensive for participants and their families than NDIS-funded support.
As a consequence of this plan change, my son had to reduce his highly beneficial psychology sessions. For a time, we attempted to supplement these with behaviour support, but this proved clunky and irrelevant for his needs. A large portion of his plan funding for behaviour support remains unspent. If a small portion of the behaviour support funding had been allocated to maintain his earlier psychology support, he would have gained more benefit from his plan and the overall cost of his plan would have been less.
I report this experience to indicate that decisions which set arbitrary limits on supports or classes of supports are blunt and risk unfairness and outcomes which disadvantage people with disability. This is highly concerning, particularly as the government is seeking to pass these proposed reforms in the absence of the promised functional capacity assessment tool or new planning framework.
Link between impairment and support need
Section 31 of the Bill proposes amendment of s34(1)(aa) of the Act, which currently reads:
the support is necessary to address needs of the participant arising from an impairment in relation to which the participant meets the disability requirements…
The Bill proposes to include in this provision the need for a support need to arise ‘directly’ from an impairment.
I am concerned about the potential impact of this proposed reform. I hope the Committee will consider these questions:
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Could this requirement impose an undue burden on people with disability and their carers to prove a direct link between a support need and a specific disability or impairment?
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If so, is this amendment justified by evidence that sufficient connection is not already required by s34(1)(aa) as it stands?
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Could this reform create artificial scenarios in which people with complex support needs are unable or find it extremely difficult to distinguish which specific support needs arise directly from which specific disabilities or impairments?
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- Is it possible under this proposed modified test that people will be denied necessary supports on the basis of an automated decision or the decision of a person who is not qualified as a health or allied health professional, when in fact the support is evidently needed due to the person’s impairment?
I raise these questions based on my family’s experience. As I noted above, my son’s condition is complex. His impairments do not operate in isolation from each other. We cannot, for example, separate his anxiety or attention disorders from his complex epilepsy or his intellectual disability.
I hope the Committee will determine that the risks raised by the Bill as proposed require considerable investigation. The NDIS is a world-leading system that has made a positive difference to the lives of very many people with disability in Australia and their families. Rushed reforms risk diminishing the supports provided to people who need them, and promoting attitudes in the broader community that people with disability are imposing unjustified costs on the national economy. Such outcomes are hardly aligned with the purpose of the NDIS and the Parliament should act protectively to ensure that changes to the scheme are evidence based and designed to avoid negative impacts on people with disability.
Thank you for considering community submissions on this Bill. Yours faithfully,
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