Confidential Submission to the Senate Committee – Proposed NDIS Legislative
Changes
Who are we?
Our child is a 4-year-old girl with a permanent severe physical and cognitive disability. She is non-speaking and requires full support for all activities of daily living. She is also playful, smiley, curious and enjoys music, books and being able to hold your hand.
Our daughter is a person with a disability who has the right to dignity, respect, and equity. She relies on the NDIS for essential supports that enable her to participate in daily life and support our family to care for her safely.
She is not a number. It is indefensible that her funding could be cut while governments fail to hold gas and large corporations to account.
We are her parents and informal carers. Prior to her diagnosis, we were both working full-time. Since then, we have both reduced our work capacity to provide care, placing financial strain on our family. This also means we contribute less tax to the economy.
The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability
highlighted some highly disturbing findings. We are doing everything we can to continue caring for our daughter at home, but like many families, we face ongoing challenges navigating complex systems, securing reliable supports, and managing the physical, emotional, and financial demands of caregiving.
Concerns about the proposed Bill
The Bill is complex, difficult to interpret, and has not developed through meaningful consultation with the disability community or consider the needs of culturally and linguistically diverse people.
The proposed changes will have a monumental impact on disadvantaging disabled people and their informal carers. These changes risk shifting the NDIS away from its core principles of individual need, choice, and control. If these changes go ahead, there is a real risk unpaid, informal caring will be the default model. This places female carers at a disadvantage as caring always disproportionately impacts upon female caregivers, careerwise and financially.
The focus should be on fixing the system, particularly where these changes contradict the UN Convention on the Rights of Persons with Disabilities. We should not be undermining the human rights principles the NDIS was built on.
The public narrative to date has focused on the cost instead of the life changing, positive impact that having the NDIS has meant for the disabled community and their carers. The disability community is being made an easy cost saving target, rather than addressing broader issues.
It is unjust to penalise and scapegoat disabled people for systemic failures created by those in positions of power. The mismanagement and existence of fraud is well documented by the media, law enforcement and the NDIS since at least 2018. Despite this, the government has failed to implement coordinated preventative controls and detective measures to limit financial exploitation, is now resulting in real-life consequences for participants and their families.
Across all areas, these changes would: Make disability supports harder to access Shift responsibility to state systems that are already at capacity or no longer exist (eg hospitals)
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Increase delays in accessing essential services and supports Shift decision-making away from individual need Place greater responsibility on families
For families like ours, the consequences are significant, affecting safety, financial stability, health, and our capacity to continue caring for our child at home. At the heart of it impacting our daughter’s ability to reach her full potential.
What the NDIS means to us Although we are still struggling to effectively establish supports for our daughter, we cannot begin to comprehend how our life would have been possible without the NDIS.
Without the NDIS, the following would not be possible:
Our daughter’s development and engagement – she has begun to develop skills to engage with toys, musical instruments, and reading with assistance. Our ability to return to work and maintain financial stability – after taking two years away from paid employment to provide full-time care, I was able to return to part-time work in
- This has enabled us to maintain some financial security and continue to afford our own home. Sustaining our role as parents and carers – access to supports allows us to step away from direct caring responsibilities, even if infrequent and only for short periods. These moments are essential for us to reconnect as a couple and to maintain our own wellbeing. Prior to accessing these supports, we had no breaks and no opportunity to step away from caring responsibilities.
Why are the proposed changes of concern?
Eligibility and permanence test
The proposed Bill seeks to introduce an eligibility test which requires you to prove all appropriate treatment options have been considered prior to accessing the NDIS. We would be expected to seek out and try treatment and manage this without any financial support, even if there was a long waitlist for treatment or significant travel.
Our daughter has a rare genetic condition; there are no known treatments. This approach is very black and white, children such as our daughter do not fit into clear binary approach. If we had to trial all possible treatments, we could not financially afford to consider this. We already have had to reduce our work capacity to provide care. This would place additional time, effort and burden to substantiate unverified treatments. It would also create a huge inequity and wealth disparity across Australia.
Change in Ministerial powers and funding caps
The NDIS is intended to help our daughter with targeted custom supports, so she can develop independence, engage in the community and achieve her personal goals. Decisions on supports should be based on functional need, safety and risk, not saving costs.
Even though we have had funding for improved daily living skills, and health and wellbeing for therapies and core supports, the proposed changes allow the Minister the power to reduce funding in any budget category to make the NDIS sustainable.
Our daughter is in the early stages of developing skills and requires therapies to support and maintain her function. These supports need to be provided at the right time to effectively contribute to her growth and development. Delays or reduction would have lifelong impact on her capacity and future independence.
Similarly, we have had to fight to hard to access assistance with daily life in the core support category, for care and respite for our daughter. The level of care and support our child requires
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is substantially higher than a four-year-old without disability. This has enabled us as parents to continue to be able to work, even thought at reduced capacity, so we can financially provide our daughter’s necessities which are not NDIS funded.
Despite now having access to core support funding, the reality is that it is still very difficult to find quality, reliable support worker providers. This sector has too many providers that underpay, predominantly female workers (contributing to systemic wealth gender inequality), provide untrained support workers, which the Quality and Safeguard Commission is ill equipped to manage.
The prospect that the Minister could simply declare a category of funding as too costly and reduce it is deeply terrifying. If this were to occur, one of us would have to stop working permanently. This would reduce our tax contribution, increase financial strain and still leave us ineligible for Carer Payments.
Without access to support workers, our mental and physical wellbeing would deteriorate, increasing the risk of carer burnout, with flow-on impacts across all aspects of our lives.
What is also troubling about this, is the power it gives the Minister to temporarily change sections of the NDIS Act without having to go through the usual parliamentary process and be debated prior to being approved by Parliament. This fundamentally goes against democratic due process.
Provider registration
The only way we have been able to final access support workers is by utilising independent workers. While this has added administrative effort, it has been the only way to maintain choice and control over who supports our daughter.
The proposal to expand provider registration to include independent workers would significantly impact what is already a very limited pool of reliable and reputable support workers. There is a real risk that many highly capable workers will find these requirements too administratively too complex, difficulty or costly and leave the sector.
In contrast, many support worker agencies remain poorly regulated, offer inconsistent quality, a highly casualised workforce, with pay rates that do not reflect the skill and responsibility required. The pay rates I’ve seen are in some instances comparable to rates received in casual retail.
Without access to independent support workers, we would be forced to take on the majority of our daughter’s complex care ourselves and reduce to single income family.
Parental responsibility
At four years old, most little kids are able to talk, walk, toilet, clean, dress and feed themselves, play independently and in groups, even if imperfectly. Our daughter requires constant one to one care and assistance to participate in daily activities, as well as monitoring throughout the night.
She requires intensive, continuous support for all aspects of care, including nappy changes, change her clothes, bathing, sit her upright, help her play. She requires continuous tube feeding (PEG/J) and medication management, physical transfers and constant supervision.
These disability supports are often considered “parental responsibility”. It is already a huge challenge to have the NDIA understand that this is over and above the care requirements of a neurotypical 4-year-old.
The Bill proposes a very significant expansion of the parental responsibility definition. This would mean we could lose access to the supports we rely on to provide essential disability specific care. It is disgusting to hear that families are already being told that if they cannot fulfil
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their parental responsibilities then they would be reported to the Department of Children Services. It is not that parents are unwilling to care for their children, it is because the burden of care is unsustainable without adequate support.
We have no informal supports from family or friends. Outside of a limited pool of support workers, all care responsibilities fall to my husband and me. Both of us have already had to reduce our working hours due to:
Severe parental burnout The physical, emotional mental, and administrative load of care Repeated hospital admissions because our daughter is highly susceptible to viral and bacterial infections. In 2025 she had seven admissions in hospital and spent just under 6 months in hospital instead of being in the community like her peers.
In the past year, my husband has experienced severe mental health challenges, including suicidal ideation. Research indicates 42% of carers have suicidal thoughts, compared to 5% of the general population1. This highlights the profound impact that inadequate support has on families, and the significant burden already placed on parents under existing definitions of parental responsibility when caring for a child with a disability.
Even with support workers, we are often working until 11pm each night managing administration and care-related tasks. Without support workers, care would become a 24-hour responsibility, forcing us into a single-income household to meet our daughters care needs. Losing access to this support category would heighten our carer burnout and health and wellbeing risk factors.
Pressure on families
Another highly concerning element of the proposed in the Bill is that, when the NDIA assesses whether to fund a support, it would not consider the pressure on families, the sustainability of care within the family, or the physical and emotional impacts of providing that care.
This proposal is inhumane. It undermines my daughter’s right to safety and a stable, caring family environment. It places an unsustainable burden on us as her parents, effectively expecting us to provide care at any cost to our own wellbeing and personhood.
We want to have another child and provide a sibling for our daughter and a future taxpayer. However, due to the significant and ongoing demands of her care, this is not something we have been able to prioritise for our family.
If supports were reduced or removed our household dual income could become a single income, because one of us would have to stop work to provide full-time care for our child.
Our physical and mental wellbeing would decline further. My husband’s suicide risk would increase immediately. If the situation escalated, my daughter could be facing life as a child with only one parent. I could become a widow, forced to give up my job to take care of my daughter, and we would require financial support through the Disability Carer Payment.
Hierarchy of evidence
I have significant concerns about the priority given to different forms of evidence when NDIA make decisions on what supports to fund. The proposal indicates that general peer-reviewed research would be prioritised above evidence specific to our child’s condition, and both would be prioritised ahead of direct evidence. This direct evidence is provided by her therapists, who
1 Suicidal Thoughts and Behaviors in Parents Caring for Children with Disabilities and Long
Term Illnesses, https://doi.org/10.1080/13811118.2024.2363230
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have the training and detailed, one-to-one knowledge of our daughter’s needs, capacity, and capabilities.
For our daughter’s rare genetic condition there is very little peer reviewed research. Of the research that exists, it is in the initial stages of understanding the disability and is not focused on treatment or provision of supports. The condition presents with significant variation, with disability and impairment sitting on a spectrum. So, for our daughter’s situation, the evidence which would be most impactful for her is the direct evidence which is ranked lowest in priority.
In our experience, a lot of NDIS funding is used to generate reports that assess our child’s capacity and track progress through therapy. These reports are specific, evidence-based, and grounded in her actual needs and goals. To prioritise generalised research over this type of individual evidence risks removing supports that are clearly effective and necessary.
What instead would be more impactful would a more streamlined report approach to minimise time and money. More training and education to therapists on effective report writing. It would also be highly beneficial if NDIA delegates or LAC have the necessary qualifications to assess and interpret reports.
Change of circumstances
Another of the proposed changes involves how we ask for unscheduled plan reassessments. Under the proposal, the NDIA would no longer be required to respond within 21 days. If our request does not meet the two specified criteria, they could take up to 90 days to respond. In addition, our Local Area Coordinator (LAC) or support coordinator would not be able to make this request on our daughter’s behalf. The immediate impact of these changes would be increased administrative burden on families.
We do not have a complete picture on the trajectory of our child’s disability. What we do know is that, in the four years of her life, her disability has had a significant and, at times, highly unpredictable impact on our family.
There have been periods where our daughter has experienced rapid growth and required new or additional AT, or when we have used support coordination funds at a faster rate as we needed additional support coordination to implement the support for our daughter. In these situations, we have had to submit a change of circumstances request for additional funding.
Without access to this process, her safety, ability to participate, overall wellbeing, and the support available to her carers would have been delayed by three to six months, until her scheduled plan reassessment.
Conclusion
We urge that the Bill does not proceed in its current form.
We ask that our family’s experiences instead be used to inform improvements to the system and protect the intent of the NDIS.
The NDIS is essential—not only for our daughter’s development and safety, but for the sustainability of our family’s ability to care for her.
Without it, the consequences would extend far beyond our household, affecting health systems, workforce participation, and broader community wellbeing.
Sincerely,
A concerned NDIS, 4 year old, recipient and her carers/parents.
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