Submission 1535
Submission to the Senate Standing Committee on Community Affairs
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Introduction
I welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
I am the mother and primary caregiver of my son, who lives with Autism Spectrum Disorder and PANS/autistic regression. He also experiences severe anxiety, difficulties with emotional control, obsessive-compulsive behaviours, tics, and increasingly complex behavioural and mental health presentations, all of which significantly impact his ability to function independently and participate in everyday life.
I am deeply concerned about the proposed changes contained within this Bill, particularly the proposed cuts to Capacity Building and Social & Community Participation supports, the reduction in participant review rights, the increased use of automated decision-making, and the level of power this legislation gives government and bureaucratic systems to override the recommendations of qualified health professionals.
While I understand the importance of ensuring the long-term sustainability of the NDIS, these reforms go far beyond targeting waste or fraud. They risk removing critical supports from some of the most vulnerable people in our community and shifting the burden directly onto already exhausted families, carers, schools, hospitals, and mental health systems.
Parliamentary Scrutiny and Transparency
The consultation period for this Bill is completely inadequate considering the scale and seriousness of the proposed reforms. Families of disabled children are already under immense pressure managing appointments, therapies, school issues, mental health crises, behavioural incidents, and day-to-day care responsibilities.
The short consultation period makes it extremely difficult for families like mine to properly understand the legislation, seek advice, prepare submissions, and participate meaningfully in the democratic process. Disabled people and carers deserve genuine consultation, not rushed reforms with lifelong consequences.
Recommendation:
Amend the consultation period fora best practice minimum of 30 days.
Submission 1535
I am extremely concerned that this Bill allows Ministers to make major decisions about eligibility and funding through ministerial instruments rather than full parliamentary scrutiny.
This means essential supports could potentially be reduced or removed without proper public debate, transparency, or accountability. Families already live with constant uncertainty and fear about the future. Giving government departments broader powers to change supports without proper oversight will only increase that fear.
Recommendation:
Require all decisions affecting eligibility and funding levels to be made through primary legislation subject to full parliamentary scrutiny and consultation.
Reasonable and Necessary Supports Being Restricted by Budget Measures
I am deeply concerned that the proposed reforms shift the focus of the NDIS away from what is “reasonable and necessary” for an individual participant and toward broader budget control measures.
The NDIS was originally designed to provide supports based on a person’s individual disability-related needs, goals, functional capacity, and circumstances. These proposed changes risk replacing individualised support decisions with decisions driven primarily by cost-cutting and overall scheme expenditure targets.
For families like mine, this creates enormous fear that supports may no longer be determined by what a disabled person genuinely requires to remain safe, participate in education and the community, build independence, and avoid crisis, but instead by what fits within predetermined budget limitations or funding categories.
Children with complex disabilities and behavioural or mental health presentations often require highly individualised supports that cannot be neatly measured against generic funding caps or standardised assumptions. Restricting access to supports purely for budget reasons risks causing significant harm and undermines the original intent of the NDIS.
Providing only limited levels of support that fall well below what professionals identify as necessary may also prevent participants from achieving any meaningful progress or stability. Inadequate supports often fail to build independence, reduce crisis situations, or improve long-term outcomes, ultimately creating greater pressure on families, schools, hospitals, mental health systems, and emergency services.
Recommendation:
Ensure all funding decisions remain genuinely based on the individual participant’s reasonable and necessary support needs, taking into account their disability, functional capacity, safety, wellbeing, long-term outcomes, family circumstances, and professional evidence. Budget sustainability measures must not override a participant’s right to essential supports required to prevent harm, maintain participation, and support independence. Participants and families must retain full rights to independently review and
Submission 1535
appeal decisions where they believe reasonable and necessary supports have been unfairly restricted or reduced.
Requirement to Exhaust Treatment Options Before Eligibility
I am deeply concerned about proposals requiring disabled people to exhaust treatment options before accessing the NDIS.
Children like my son already attend countless appointments, therapies, assessments, and interventions. Families should not be forced into pursuing endless treatments simply to prove eligibility for support.
Not all disabilities can be “treated away,” and many therapies are financially inaccessible, geographically unavailable, or inappropriate for individual circumstances.These barriers are even greater for families living in rural and remote areas, where access to specialists, therapies, assessments, mental health supports, and disability services is often extremely limited or non-existent. Families should not be penalised or denied supports because appropriate services are unavailable, unaffordable, or inaccessible based on where they live.
Recommendation:
Do not proceed with any requirement to exhaust “appropriate treatment” options before eligibility.
Professional Recommendations and Automated Decision-Making
Another major concern is the increasing shift away from relying on qualified health professionals and toward bureaucratic or automated decision-making.
Psychologists, speech therapists, occupational therapists, physiotherapists, paediatricians, behaviour specialists, and schools spend years working with children like mine. They understand the complexity of these children’s needsbecause they directly witness the day-to-day impacts on functioning, communication, behaviour, emotional regulation, education, and family life. Yet families are increasingly finding that extensive professional evidence and clinical recommendations can simply be overridden. That is frightening.
Health professionals regularly recommend far more therapy and support hours than what is actually funded, meaning families are already trying to manage highly complex needs with inadequate support.
Children like my son cannot be reduced to tick boxes, algorithms, or computer-generated decisions. His needs are complex, fluctuating, and deeply individual. No automated system can fully understand the impact his anxiety, 0CD behaviours, emotional dysregulation, tics, fatigue, behavioural escalation, and developmental challenges have on his everyday life.
Recommendation:
Do not proceed with automated decision-making systems or standardised assessment tools unless independently validated across diverse disability groups and accompanied by strong human oversight, transparency, and full review rights.
Submission 1535
Supports Cut Before Replacement Systems Exist
I am extremely concerned about cuts to social, civic, and community participation supports before Foundational Supports are fully operational.
Capacity Building and Social & Community Participation supports are central to what the NDIS was originally designed to achieve, independence, inclusion, participation, prevention, and long-term positive outcomes.
Removing or reducing these supports undermines the entire purpose of the scheme.
My son is currently in a support class placement at high school where he requires regular one-on-one support throughout the school day. Even within a highly supported environment, he experiences severe emotional dysregulation, fatigue, aggression, distress, and school engagement difficulties.
There have already been multiple serious incidents involving aggression, self-harm statements, threats toward staff, destruction of property, and behaviours that posed risks to himself and others. During one particularly serious episode, he became highly distressed and deteriorated to the point where the mental health ambulance team was contacted.
These incidents are occurring despite extensive support strategies, experienced staff, positive behaviour support, and close collaboration between school, family, and allied health professionals.
Without early intervention, daily living supports, therapies, behaviour support, and community participation supports, children like my son are at significantly greater risk of worsening mental health, behavioural crises, school refusal, psychiatric presentations, social isolation, and long-term dependence on emergency and crisis systems.
These cuts will not save money long term. They will shift costs into hospitals, emergency departments, mental health systems, schools, crisis accommodation, and welfare systems while placing enormous additional pressure on unpaid carers and families.
I personally had to significantly reduce my work hours and step away from taking over my father’s business because my son’s needs became too great to balance with full-time employment. The cost of inadequate support is already being carried by families every day.
Recommendation: Ensure no reductions to community participation or capacity building supports occur until replacement systems are fully operational, adequately funded, and demonstrably capable of meeting participant needs. Any proposed reduction in supports should be independently assessed on an individual basis, recognising that every disabled person’s needs, circumstances, risks, and support requirements are different and cannot safely be applied across broad groups or categories. Decisions must follow a clear “do no harm” principle to ensure participants do not lose essential supports that protect their safety, wellbeing, independence, education, mental health, and community participation.
Submission 1535
Participants and families must also retain full rights to have decisions independently reviewed and appealed where they do not agree with funding reductions or support changes.
Parental Responsibility and Caring Burden
I am also deeply concerned about the increasing expectation that families will absorb growing levels of care when supports are reduced or removed.
Parents of disabled children already provide enormous amounts of unpaid care well beyond what would ordinarily be expected for a child or young person of the same age without disability. Many families are managing complex medical needs, behavioural support, emotional regulation difficulties, school engagement issues, therapies, appointments, supervision, and crisis situations around the clock with very little respite or support.
There appears to be an increasing shift toward viewing these responsibilities as simply “parental responsibility” rather than recognising the extraordinary level of care required for children with significant disabilities and complex needs.
The reality is that many families are already functioning beyond capacity. Reducing supports further will not make needs disappear, it will simply force parents, particularly mothers, to carry even greater caring burdens at the expense of their own employment, health, mental wellbeing, financial security, and ability to sustain caring long term.
Without adequate support, families are at greater risk of burnout, mental health deterioration, family breakdown, financial hardship, and crisis intervention involvement. These outcomes are harmful not only for carers, but also for the disabled children who rely on stable and supported caregiving environments.
Recommendation:
Ensure the NDIS clearly recognises the difference between ordinary parental responsibilities for a child or young person of the same age without disability and the significantly increased caring responsibilities associated with disability. Funding decisions should properly consider carer capacity, sustainability of informal supports, risks of burnout, and the long-term wellbeing of both disabled participants and their families. No reduction in supports should occur where doing so would place unreasonable or unsafe caring expectations onto families.
Human Rights and Long-Term Consequences
These proposed reforms raise serious human rights concerns.
Disabled people have the right to access supports that allow them to participate in society, access education, build independence, maintain safety, and live with dignity. Removing supports that directly impact communication, emotional regulation, participation, and development removes opportunities and quality of life from vulnerable people.
Submission 1535
The flow-on effects of these reforms will impact entire families. When supports are removed, the burden does not disappear, it shifts directly onto carers, schools, hospitals, mental health systems, and already overstretched services.
Parents reduce work hours or leave employment entirely. Financial stress increases. Carer burnout increases. Family relationships break down under constant exhaustion and
pressure. Siblings are affected. Disabled people become more isolated and more vulnerable to crisis.
These proposed changes will also disproportionately impact women, who make up the majority of unpaid carers for disabled children and family members. When supports are reduced or removed, it is overwhelmingly mothers, grandmothers, and female carers who are expected to absorb the increased caring responsibilities. This often forces women to reduce work hours, leave employment entirely, sacrifice career progression, superannuation, financial security, and their own physical and mental wellbeing in order to fill gaps left by inadequate supports. The caring burden placed on women is already immense, and these reforms risk pushing many families beyond breaking point. Increased unpaid caring responsibilities also contribute to social isolation, financial hardship, carer burnout, relationship breakdowns, and poorer long-term outcomes for entire families. Rather than promoting independence and participation, these cuts risk trapping both disabled people and their carers in cycles of crisis, exhaustion, and disadvantage.
Capacity Building and Social & Community Participation supports are investments in prevention, independence, inclusion, and long-term outcomes. Removing them will create greater suffering and far greater long-term costs for both families and government systems.
Please listen to the voices of families living this reality every single day before making decisions that will have lifelong consequences for vulnerable children and their futures.