National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2293
Senate Submission – NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
Changes to the Reasonable and Necessary Criteria / Increased Reliance on Parental Responsibility
The proposed changes placing greater emphasis on “parental responsibility” fundamentally fail to understand what it means to raise and care for a child with disability.
This is not a cost-saving measure. It is simply transferring the cost from government systems onto already exhausted families. The work does not disappear when funding is removed — it is absorbed by parents, most often mothers, at enormous personal, financial and psychological cost.
My husband and I both work full time because we must provide housing, food, clothing, education and stability for our children. Yet our son requires multiple therapies every week, specialist appointments, constant supervision and support that far exceed what is typical for a child his age.
Our son currently attends multiple therapies each week at times such as 9:30am, 10am and 2:30pm. Managing these appointments while maintaining full-time employment is already becoming increasingly difficult.
Our son is not yet school-aged, but he will begin school in 2028, and we are already extremely concerned about how we will manage this alongside full-time employment.
Based on our current experiences accessing therapies and supports, it is unlikely he will be eligible for standard before and after school care due to staffing ratios and support requirements. This means one of us will likely need to be available for school drop-off and pick-up every day, in addition to transporting him to therapies and appointments during work hours.
The Government continues to refer to these responsibilities as “parental responsibility”, but parents are also responsible for financially supporting their children through stable employment. We cannot provide housing, food, utilities and financial security for our family if we are expected to function as full-time carers, transport providers and therapy coordinators without adequate support.
If supports continue to be reduced under the justification of “parental responsibility”, many families like ours will be forced to reduce work hours, leave employment entirely or rely on welfare payments simply to survive. We are already under immense pressure. Removing supports will not save money long-term — it will increase costs through lost workforce
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2293
participation, increased carer burnout, mental health decline, relationship breakdowns and housing instability.
My husband and I are already operating beyond capacity. Our son does not sleep through the night. I often function on three hours of sleep or less while also caring for our eight- month-old baby. There is no respite. We do not have family support nearby because we were priced out of Sydney due to the cost of living crisis. The only time I have spent away from my son in four years was when I gave birth to my daughter.
We do not get date nights. We cannot prioritise our own health or marriage. We cannot simply hire a regular babysitter because caring for a child with additional needs requires specialist understanding, consistency and trust.
These reforms assume families have endless emotional, physical and financial capacity. We do not.
Increased Reliance on Informal Supports and Unpaid Carers
The proposed reforms place unreasonable reliance on informal supports without acknowledging the realities families face.
When formal supports are removed, parents become unpaid therapists, behavioural supports, transport providers, advocates, coordinators and full-time carers on top of maintaining employment and caring for other children.
This burden disproportionately impacts women, who are more likely to reduce work hours or leave the workforce entirely.
Families like mine are already carrying the system. We are not asking for luxury or convenience. We are trying to survive while giving our child the best possible chance at life.
Early Intervention and Long-Term Investment
Early intervention is not wasted money. It is one of the smartest long-term investments government can make.
The purpose of investing in therapies and supports for autistic children is to maximise independence, communication, emotional regulation, participation and future workforce capacity. These supports help children build the skills needed to contribute meaningfully to society later in life, including through education and paid employment.
Reducing supports during critical developmental years will not reduce long-term costs. It will increase them.
Without adequate early intervention, many children will require significantly higher levels of support throughout adulthood. This creates greater long-term pressure on healthcare, disability, housing and welfare systems.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2293
Governments routinely invest heavily in aged care because older Australians deserve dignity and support. But aged care spending does not increase future workforce participation or long-term economic contribution. Early intervention for children with disability does.
Investing in children is investing in Australia’s future.
Concerns About Autism Terminology and Understanding
I am deeply concerned by the ongoing use of terms such as “mild”, “moderate” and “severe” autism in public discussion and policy approaches.
Autism is not linear. A child who appears “mild” in one setting may still require enormous support behind closed doors. Many autistic individuals mask their difficulties during short interactions or assessments, which can lead decision-makers to underestimate their needs.
I urge policymakers to spend meaningful time with families raising children with disability before making decisions that dramatically impact our lives.
A short assessment or clinical snapshot cannot capture the cumulative exhaustion, behavioural challenges, emotional regulation difficulties, sleep deprivation, supervision requirements and social barriers families navigate every single day.
Provider Misconduct and NDIS Waste
Participants and families are constantly portrayed as the problem within the NDIS, but in my experience many of the most concerning behaviours come from providers exploiting vulnerable families.
When I was attempting to organise therapy for my son, multiple providers refused to even speak with me before funding was approved. Some demanded to know exactly how much funding we had received before discussing services. Others refused to disclose fees upfront. One provider attempted to charge approximately ten hours of funding for an initial assessment, with this information hidden discreetly within a lengthy service agreement.
Families are overwhelmed, exhausted and vulnerable. Many do not have the time, energy or expertise to identify unethical practices.
If the Government genuinely wants to reduce waste within the NDIS, there must be significantly stronger oversight, transparency and accountability for providers engaging in exploitative or unethical conduct.
Families seeking support for their disabled children are not “rorting” the system. We are trying to access essential services while keeping our families afloat.
The Human Impact of These Reforms
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2293
These reforms ignore the emotional reality of raising a child with disability.
Parents already carry enormous grief, fear and uncertainty about the future. We mourn the life we imagined for our child while simultaneously loving them completely for who they are.
I am terrified about what will happen to my son in the future. Society is not always kind to disabled people. These reforms send a message that disabled children and their families are a burden rather than human beings deserving of support, dignity and opportunity.
I also live with constant fear about what would happen if something happened to myself or my husband. Who would care for our son? Who would advocate for him? Who would ensure he is safe, supported and valued?
These proposed changes feel deeply dehumanising to families like mine. They make us feel invisible, unsupported and abandoned by the very systems that were designed to help Australians with disability live meaningful lives.
I urge the Senate to reconsider reforms that shift unsustainable burdens onto families already at breaking point.