Submission to the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Attention: Committee Secretary, Senate Standing Committee on Community Affairs Submitted by email: community.affairs.sen@aph.gov.au Date: 29 May 2026
I welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
I am the parent and primary carer of two autistic children aged 11 and 8. Both children are diagnosed Level 2 Autism Spectrum Disorder. My 11-year-old son also has ADHD. My 8-year-old daughter has ADHD, Generalised Anxiety Disorder and Selective Mutism.
I want to outline the harm this Amendment Bill will cause if it passes Parliament. This Bill is too far-reaching to pass as it stands. I believe the Bill requires further scrutiny and amendment before it proceeds.
Parliamentary Scrutiny and Transparency
The consultation period for the Amendment Bill is two weeks, which is insufficient to allow for appropriate consultation, considering accessibility and communication needs. The Australian Government Guide to Policy Impact Analysis says consultation should occur for a minimum of 30 days where possible.
The short timeline impacts families like mine profoundly. Caring for disabled children is not remotely comparable to typical parenting demands. Every single day involves emotional regulation support, school advocacy, supervision, behavioural management, therapy coordination, anxiety management, crisis prevention, sensory accommodations, and managing the impact on the entire family unit.
Parents like me are already operating beyond capacity simply trying to keep our children safe, emotionally regulated, attending school, and connected to the world around them. Finding the time, emotional energy, and cognitive bandwidth to analyse complex legislation in a two-week period is incredibly difficult. Families most affected by these reforms are the very families least able to respond quickly because we are already drowning in caregiving responsibilities.
Recommendation: Amend the consultation period for a best practice minimum of 30 days.
Key decisions left to ministerial instruments, not law
The issue: The Bill allows Ministers to change who gets NDIS support and how much funding people receive by signing an instrument, without going back to Parliament.
How this affects participants:
Autism is a permanent developmental disability. My children can learn skills and improve functioning with support, but they will not “grow out of” autism. Their support needs evolve over time, but they do not disappear. Support scaffolds their functioning, emotional regulation, communication, independence, community access, safety, and participation in daily life.
Without support, everything becomes harder, not only for the autistic person but for the entire family system around them. The idea that critical decisions about eligibility and funding could be changed without parliamentary scrutiny creates enormous fear for families like mine who already live with constant uncertainty about our children’s future.
Every autistic child is different. Needs can vary dramatically even between siblings in the same home. One child may struggle most with aggression, emotional regulation and school attendance, while another may be consumed by anxiety, selective mutism and separation difficulties. A rigid system that narrows eligibility or reduces flexibility will fail children whose disabilities do not fit neatly into a box.
Recommendation: Require that all decisions affecting NDIS eligibility and funding levels be made through primary legislation subject to full parliamentary scrutiny, with mandatory advance notice to affected participants before any changes take effect.
Existing participants face narrower criteria and fewer rights to challenge decisions
The issue: The Bill changes the rules for existing NDIS participants and makes it harder to challenge some decisions about supports and funding.
How this affects participants:
Both of my children attend mainstream school, but doing so requires enormous levels of advocacy, support, emotional labour, and constant intervention from me. Their disabilities do not disappear simply because they are physically present in a mainstream classroom. In many ways, mainstream placement can increase family stress because parents are required to continuously fight for accommodations, derstanding, safety, flexibility, and inclusion.
Both of my children experience frequent and significant meltdowns. Both have periods of school refusal, and my 11-year-old son’s difficulties are escalating as he approaches
high school.
I genuinely cannot see how he will cope within the current education system without significant support.
My son can become physically aggressive toward his younger sister, sometimes frequently, and while aggression toward adults is less common now than it once was, we have lived through years where violence, property damage, and emotional volatility were regular parts of daily life. Families in these situations often live in a state of chronic hypervigilance that outsiders do not understand. The stress can feel relentless and consuming.
My daughter experiences severe separation anxiety. At home, she often cannot tolerate being in a separate room from me. She struggles to be left with other people and can become highly distressed when separated from me. At school, her anxiety and selective mutism can significantly impact her ability to participate, communicate, and feel safe.
The impact on siblings in autistic families is enormous. Both of my children struggle with perspective-taking, emotional regulation, and understanding each other’s needs. Managing conflict, distress, and emotional overwhelm between siblings requires constant adult intervention and supervision.
Our family is also highly socially isolated because of what our children can cope with and because the caregiving demands are so extreme. Community outings, holidays, social events, appointments, extracurricular activities, and even basic errands can require intense planning, emotional preparation, and risk assessment. Many families like ours slowly become isolated because participating in normal community life becomes so difficult.
The supports we receive are not luxuries. They are essential to maintaining safety, participation, family functioning, emotional wellbeing, and our children’s future capacity for independence. Families must retain the right to request and receive supports based on their child’s actual functional needs, not based on arbitrary limitations or assumptions about disability.
Recommendation: Require a “no harm” safeguard ensuring no current participant loses access to supports unless equivalent supports are in place, with independent review rights before any exit decision and access to unscheduled reassessments preserved.
Unreviewable ministerial power to cut funding across all support categories
How this affects participants: Community access supports are absolutely critical for autistic children and teenagers. Neurotypical children naturally build independence, friendships, confidence and social skills through spontaneous peer interaction and increasing independence from parents. Many autistic children do not have equal access to these opportunities without support. My children need support to safely participate in activities, develop friendships, regulate emotions in the community, and build confidence away from home. These
Supports Are Not Extras
Supports are not “extras.” They are often the only pathway autistic children have toward meaningful inclusion, independence and social connection.
Without these supports, autistic children can become trapped in cycles of isolation, anxiety and dependence. Families already carrying overwhelming caring responsibilities become even more isolated and exhausted.
Recommendation: Require that unspent funds carry over at plan renewal for participants saving for high-cost items and require independent review rights before any funding reduction takes effect.
Requirement to Exhaust Treatment Options Before Eligibility
How this affects participants:
Autism is not something that can be cured through treatment. My children deserve support because they are disabled by the barriers they face in daily life, not because they have “failed” enough therapies first. Families should not be forced into endless cycles of appointments, therapies, assessments and interventions in order to prove their children are sufficiently disabled to deserve help. Many families are already financially, emotionally and physically exhausted trying to access supports that are difficult to obtain, expensive, and inconsistently available depending on where you live.
Recommendation: Do not proceed with a requirement to exhaust “appropriate treatment” options.
Unvalidated Functional Capacity Assessment Tool Risks Misidentifying Need
How this affects participants:
Autistic children often mask difficulties in formal settings. A child may appear verbally capable, compliant or calm during an assessment while completely collapsing emotionally afterwards at home. Point-in-time assessments frequently fail to capture the full extent of emotional regulation difficulties, anxiety, aggression, shutdowns, sensory overwhelm, social communication struggles, and family impact.
Assessments must recognise the reality of disability across the whole person and across the whole family environment. A child’s needs cannot be accurately understood in isolation from their home life, school experience, mental health, sensory profile, or the extraordinary amount of unpaid support provided by parents. My children mask in front of others. The true understanding of their abilities and behaviours is only seen by us, and a few therapists who come into our home.
Recommendation: Do not proceed with I-CAN as the functional capacity assessment tool unless it has been demonstrably validated to identify the needs of all people with disability.
Supports cut before replacement system is ready
How this affects participants: The responsibilities of parenting autistic children with significant support needs cannot reasonably be compared to parenting neurotypical children. Many parents of disabled children function simultaneously as carers, behavioural supports, advocates, emotional regulators, therapists, education supports, crisis managers and case coordinators every hour of every day.
If supports are reduced before replacement systems are operational, families like mine will absorb the impact completely. The burden will not disappear; it will simply be shifted onto already exhausted parents, siblings, and autistic children themselves. I believe you will have more cases such as the murder suicide experienced in Mosman Park in Perth earlier this year, from desperate families with no support.
The long-term cost of reducing supports will be greater family burnout, mental health crises, school disengagement, social isolation, increased dependence, and poorer outcomes for disabled children and teenagers.
Recommendation: Require that no reductions to community participation or capacity building supports take effect until Foundational Supports are fully operational, adequately funded and demonstrably able to meet the needs of those who will lose NDIS supports.
Thank you for considering this submission.