National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2424
31st May 2026
Submission in Opposition to the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
I write as the parent and primary carer of a 15-year-old autistic daughter with significant functional impairments across multiple areas of daily life.
My daughter has been diagnosed with Autism Spectrum Disorder, Generalised Anxiety Disorder and Social Anxiety Disorder. She also experiences significant executive functioning impairments, sensory sensitivities, chronic fatigue and a recently diagnosed POTS-like syndrome. She has a history of self-harm and ongoing mental health vulnerability.
I am deeply concerned about several aspects of Schedule 1 – Access and Planning Measures within the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 and the potential impact these changes may have on autistic young people with complex support needs and their families.
Part 1 - Defining Functional Capacity
I am concerned that a more standardised or objective assessment of functional capacity may fail to adequately capture the lived reality of autistic young people, particularly highly intelligent autistic girls who often mask their difficulties.
My daughter has previously been described by a psychologist as “twice exceptional”. On paper, she may appear capable due to her intelligence and verbal ability. However, her actual day-to- day functioning is significantly impaired.
She is unable to cope with mainstream schooling and now undertakes distance education. Even after reducing her subject load, she continues to struggle to meet educational demands. She experiences substantial difficulty with planning, organisation, task initiation, cognitive flexibility, attentional control and emotional regulation – all of which have a significant impact on her wellbeing, including feelings of failure and inadequacy.
Recently, her mathematics teacher advised that she had completed only 56% of assigned homework tasks. This occurred despite mathematics being one of her strongest subjects and an area of genuine interest. This example highlights that her difficulties are not caused by lack of intelligence, motivation or effort. Rather, they arise from executive functioning impairments that substantially affect her ability to translate ability into functional performance.
I am concerned that standardised assessments may over-estimate the functioning of young people like my daughter by focusing on what they are theoretically capable of doing rather than what they can consistently sustain in daily life.
Part 2 - Limiting Unscheduled Plan Reassessments
I am concerned about the proposal to tighten criteria for unscheduled plan reassessments.
My daughter’s functioning has changed significantly since her autism diagnosis in 2023. At that time, she was attempting mainstream schooling. Since then, increasing educational demands, escalating anxiety, chronic fatigue, sensory difficulties and emerging health issues have substantially affected her functioning.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2424
31st May 2026
The reality of disability, particularly during adolescence, is that needs can change rapidly. Restricting opportunities to seek reassessment may delay access to supports during periods of deterioration and place young people at greater risk of crisis.
Part 3 - Strengthening the Link Between Impairment and Support Needs
I am concerned that narrowing support eligibility to needs arising directly from eligible impairments may disadvantage participants with complex, overlapping conditions.
My daughter’s autism cannot be separated neatly from her anxiety disorders, sensory processing difficulties, executive functioning impairments and physical health challenges. These conditions interact and compound one another.
For example, her executive functioning difficulties contribute directly to educational disengagement, while anxiety and fatigue further impair her ability to participate in learning. A narrow interpretation of causation risks overlooking the cumulative functional impact of multiple interacting disabilities.
Part 4 - Support Determinations and Reduction of Funding for Groups of Supports
I am particularly concerned about provisions enabling reductions in funding for categories such as social, civic and community participation and capacity-building supports.
For autistic adolescents, these supports are not optional extras – they are critical.
My daughter has only two friends and has limited communication with one of them. She experiences significant social anxiety, sensory restrictions and difficulty participating in community activities that many teenagers take for granted.
Capacity-building supports assist her to develop executive functioning, emotional regulation, self-management and independence skills. These supports are investments in her future functioning and independence, not discretionary lifestyle supports.
Reducing these supports will likely increase long-term dependence rather than reduce it, especially as she transitions to adulthood.
Part 5 - Plan Renewal and Removal of Carry-Over Funding
I am concerned about the proposal for plan end dates and the inability to carry over unspent funds into renewed plans.
My daughter’s functioning fluctuates significantly depending on anxiety levels, fatigue, health issues and educational demands. There are periods where support utilisation may be lower, followed by periods of substantially increased need.
A rigid approach to funding periods risks penalising participants whose disabilities are episodic, fluctuating or affected by periods of burnout and recovery.
Part 8 - Changes to the Definition of Permanence
I am concerned about proposals that further tighten the concept of permanence through consideration of “all appropriate treatment”.
Autism is a lifelong neurodevelopmental disability. While therapies and supports may improve functioning, they do not remove the disability.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2424
31st May 2026
There is a risk that participants may be expected to pursue increasing amounts of treatment before support needs are recognised, despite ongoing significant functional impairments.
Part 9 - Consideration of Other Service Systems and Informal Supports
I am particularly concerned about provisions requiring consideration of other service systems and informal supports.
It is important to recognise that informal supports are not equivalent to professional supports.
While families provide invaluable care and advocacy, parents and carers are generally not occupational therapists, psychologists, speech pathologists, educators or other allied health professionals. Informal supports cannot be expected to replace the expertise, training and evidence-based interventions provided by qualified practitioners.
Access to appropriately qualified therapists ensures that participants receive individualised advice and interventions tailored to their specific circumstances, strengths and challenges. This is particularly important for autistic young people whose support needs are often complex and highly individual.
In my daughter’s case, professional supports assist with executive functioning, emotional regulation, sensory processing, community participation whilst managing anxiety, and the development of independence skills. These supports are based on professional assessment and clinical expertise. Without access to appropriately qualified professionals, families may be left to navigate complex disability-related challenges without the knowledge, training or resources required to identify and implement the most effective supports.
The assumption that informal supports can substitute for professional expertise risks creating poorer outcomes for participants and greater stress for families. It may also result in delayed intervention, worsening functional capacity and increased reliance on more intensive and costly services in the future.
The role of family should be to complement professional supports, not to replace them.
As a parent managing my own physical disabilities and mental health challenges, I am also particularly concerned that increasing reliance on informal supports may place unrealistic expectations on carers while simultaneously reducing access to the professional expertise that families rely upon to make informed decisions and achieve positive outcomes.
I work full-time while also functioning as my daughter’s primary carer, advocate, emotional support person, educational support person and care coordinator. The support I provide is substantial and largely invisible.
I am concerned that the existence of a parent willing to provide support may be interpreted as evidence that support needs are already being met. However, willingness should not be confused with capacity, nor should parental support be viewed as a substitute for professional expertise.
This approach fails to recognise the sustainability of caring arrangements, the finite capacity of family carers, and the reality that many carers are managing their own disabilities, health conditions and employment responsibilities.
If formal supports are reduced, those support needs do not disappear. They are simply transferred to families, many of whom are already operating at capacity.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2424
31st May 2026
Impact on Mental Health and Suicide Risk
One of my greatest concerns is the impact of reduced supports on mental health outcomes for vulnerable young people.
My daughter has previously engaged in self-harm. She experiences significant anxiety, increasing emotional dysregulation and escalating meltdowns.
The supports she receives are not simply about improving convenience or lifestyle. They act as protective factors that help maintain her safety, educational engagement, emotional stability, social participation and hope for the future.
For some autistic adolescents, support reduction may not merely result in inconvenience. It may contribute to worsening mental health, increased self-harm risk, crisis presentations, psychiatric admissions and, in the worst cases, suicide.
I fear that policy decisions designed to reduce expenditure within the NDIS may ultimately shift costs to mental health services, emergency departments, hospitals, education systems and families, while causing significant harm to vulnerable young people.
Conclusion
I acknowledge the importance of ensuring the long-term sustainability of the NDIS and addressing fraud and misuse within the Scheme.
However, I urge decision-makers to ensure that reforms do not unintentionally disadvantage autistic young people whose disabilities may be less visible, highly variable or masked by intelligence.
Any assessment framework must properly recognise executive functioning impairments, sensory disabilities, mental health impacts, fluctuating capacity and the cumulative effect of multiple interacting conditions.
Most importantly, reforms must recognise that family carers are not an unlimited resource.
For families like mine, NDIS supports do not replace parental care. They make that care sustainable.
Without those supports, the risks are not theoretical. They are educational disengagement, declining mental health, increased self-harm risk, family burnout and reduced future independence for some of Australia’s most vulnerable young people.
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