Submission to the Senate Community Affairs
Legislation Committe
National Disability Insurance Scheme Amendment Bill 2026
Submitted by: Siran Bignell
Introduction
My name is Siran Bignell, and I am the mother of a young man with an intellectual disability, autism, ADHD, anxiety, depression and obsessive-compulsive disorder (OCD). I write this submission from three perspectives: as a lifelong parent and carer, as a disability professional, and as a community advocate. I work full-time as a Coordinator of disability supports, supporting National Disability Insurance Scheme (NDIS) participants to navigate what has become an increasingly complex system. Every day I work alongside participants, families, allied health professionals and service providers to help people access the supports they need to live safe, meaningful and dignified lives.
I have also served as a Board Member of Camp Autism WA since 2012, supporting families raising neurodivergent children and adults. Through this role I have witnessed the realities experienced by hundreds of Western Australian families. Outside my professional and volunteer work, I regularly assist friends, extended family and members of my community to understand and access the NDIS because many people simply cannot navigate the system alone. I was a strong advocate for the introduction of the NDIS in 2011. I believed in its promise: a national scheme founded on dignity, choice, control and inclusion that recognised disability as a human rights issue rather than a welfare issue. It represented hope for thousands of Australians who had spent decades fighting for equitable access to support. Until now, I have never felt compelled to make a submission opposing the direction of NDIS reform.
I acknowledge the importance of ensuring the long-term sustainability of the Scheme. I support measures that address fraud, improve consistency, and ensure public funds are used responsibly. Sustainability is essential if the NDIS is to continue supporting future generations. However, sustainability must not come at the expense of fairness, flexibility and the individualised support that underpins the Scheme. My concern is that several provisions within the National Disability Insurance Scheme Amendment Bill 2026 risk shifting the Scheme away from its original intent. Rather than strengthening outcomes for participants, some proposed amendments may increase administrative burden, reduce flexibility and create additional barriers for people with permanent disability and the families who support them. This submission has been written late at night between full-time employment and my responsibilities as a mother and lifelong carer. Like many families, we are exhausted. We continue because we love our son and because we believe every Australian with disability deserves the opportunity to live an ordinary life.
I did not write this submission because I oppose reform. I wrote it because I believe the NDIS is worth protecting.
Executive Summary
This submission addresses the following key provisions of the National
Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026:
the proposed statutory definition of functional capacity; restrictions on unscheduled plan reassessments; amendments requiring supports to be directly related to eligible impairments; new Ministerial powers to determine funded support categories; plan end dates and plan administration provisions; provisions relating to permanence and appropriate treatment; interaction between the NDIS and mainstream service systems; fraud prevention and compliance powers; increased use of automated administrative decision-making; and participant safeguards, review rights and Scheme accessibility.
Statement of Concern
This submission addresses several key provisions of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. While I support the Bill’s objective of ensuring the long-term sustainability of the NDIS, I am concerned that several proposed amendments may unintentionally reduce participant rights, restrict flexibility, increase administrative burden and diminish the Scheme’s capacity to respond to changes in functional capacity.
Principles That Should Guide Reform
My overarching concern is that the cumulative effect of the Bill’s amendments shifts the focus of the NDIS from an individualised, participant-centred scheme towards a more restrictive administrative model, potentially undermining the principles of choice, control and reasonable and necessary supports established under the NDIS Act.
The NDIS exists because Australians recognised that disability should never prevent someone from participating in their community. The Scheme should continue to be guided by several fundamental principles. Firstly, people with permanent disability require certainty. Secondly, supports should respond to functional capacity rather than diagnostic labels. Thirdly, prevention is almost always less expensive than crisis intervention. Fourthly, reform should reduce unnecessary administration, not increase it. Finally, people with lived experience should remain central to policy development.
Functional Capacity Must Remain Flexible
Relevant Bill provision: Proposed amendments introducing a statutory definition of functional capacity and changes to how participant support needs are assessed.
Statement of Concern
I am concerned that the proposed statutory definition and application of “functional capacity” may encourage fixed or overly narrow assessments that fail to recognise that many participants experience significant fluctuations in functioning despite having permanent disabilities.
I support efforts to improve consistency in assessments across the NDIS. However, consistency must not become rigidity. My son’s diagnosis has not changed for many years. His disability remains permanent. His functional capacity, however, changes significantly depending on life circumstances. Recently our family moved house. For most Australians this would be considered a stressful but manageable event. For Jack, it resulted in profound regression. Within weeks his anxiety escalated dramatically. Skills that had taken years to develop rapidly disappeared. Before the move, Jack was participating socially with peers and demonstrating increasing independence in everyday living. Today he is barely functioning. He has regressed to frequently wetting himself despite years of progress. His obsessive-compulsive behaviours have intensified to the point where he repeatedly opens and closes windows for extended periods because his anxiety has become overwhelming. Simple daily routines now require extensive prompting and support. Our family lives with constant verbal abuse, emotional distress and hypervigilance. At times it feels like living in a war zone. This is not because Jack is a bad person. It is because anxiety fundamentally changes his ability to regulate, communicate and function. His diagnosis has remained exactly the same. His support needs have not. This experience demonstrates why functional capacity cannot be viewed as fixed. For people with autism, intellectual disability and other lifelong disabilities, periods of regression are common following significant change. Skills can take years to develop and weeks to disappear. The NDIS must retain sufficient flexibility to respond rapidly when participants experience significant deterioration in functioning. Delays in increasing supports frequently result in avoidable crises, hospital presentations, family breakdown and greater long-term costs to government.
Urgent Plan Reassessments
Relevant Bill provision: Amendments limiting access to unscheduled plan reassessments and introducing greater reliance on scheduled reviews
Statement of Concern
I am concerned that the proposed provisions limiting unscheduled plan reassessments may prevent participants from accessing timely increases in support when their functional capacity deteriorates unexpectedly due to significant life events or changing circumstances.
The proposal to reduce unnecessary reassessments has merit. Families should not be subjected to unnecessary reviews. However, the Scheme must preserve an expedited pathway for participants whose circumstances change rapidly. Life events such as bereavement, housing changes, carer illness, behavioural escalation or mental health deterioration can substantially alter a participant’s functional capacity. Waiting months for administrative processes to catch up may result in harm that could have been prevented through timely intervention. Responsive support is not wasteful expenditure. It is good policy. It protects participants while reducing the likelihood of expensive crisis responses
Supports Must Be Based on Functional Need, Not Narrow Diagnostic
Interpretation
Relevant Bill provision: Amendments requiring funded supports to be directly related to a participant’s eligible impairment when determining NDIS supports.
I am concerned that amendments requiring supports to be directly related to a participant’s eligible impairment could result in an overly restrictive interpretation of reasonable and necessary supports and fail to recognise the complex interaction between multiple disabilities and functional limitations.
I am concerned by provisions that require supports to be directly related to a participant’s eligible impairment if this results in a narrower interpretation of “reasonable and necessary” supports. Disability does not occur in isolated categories. For many participants, particularly those with intellectual disability, autism and multiple co-occurring conditions, supports are effective because they address the person’s overall functional capacity rather than a single diagnosis. For my son, behavioural support, community participation and skill development are interconnected. His anxiety affects his ability to communicate. His autism affects his emotional regulation. His intellectual disability affects his ability to independently problem solve. His OCD compounds these challenges. Attempting to separate supports according to individual diagnoses does not reflect the reality of how disability affects daily life.
Supports should continue to be assessed according to whether they improve functional outcomes, independence and participation, rather than whether they can be attributed exclusively to one impairment.
Ministerial Powers to Reduce Categories of Supports
Relevant Bill provision: Proposed powers enabling the Minister to determine or vary categories of NDIS supports through legislative instruments.
One of my greatest concerns is the proposal allowing categories of funded supports to be reduced through Ministerial determination. While I understand governments must respond to emerging evidence and financial pressures, changes of this significance should not occur without robust safeguards. Participants and families need certainty. Support providers require certainty to invest in services. Families make life decisions based on the supports available. Any reduction to categories of funded supports should require meaningful consultation with people with disability, carers, representative organisations and frontline professionals. It should also be subject to Parliamentary scrutiny and an independent assessment of the likely impact on participants. The voices of people most affected by these decisions should never become secondary to administrative convenience.
Longer Plans for Lifelong Disabilities
Relevant Bill provision: Amendments introducing plan end dates and revised plan management arrangements.
For participants with permanent disabilities such as intellectual disability and autism, annual plan renewals frequently provide little benefit while imposing substantial emotional and administrative costs. Every year, families are asked to gather new reports confirming conditions that are universally recognised as lifelong. Every year they retell traumatic histories. Every year they relive diagnoses, developmental delays, behavioural crises and some of the most difficult experiences of their lives simply to retain supports that have already been demonstrated as necessary. This process is emotionally exhausting. It is also an inefficient use of public resources. The NDIA, clinicians, allied health professionals and families all invest considerable time producing documentation that rarely changes the fundamental facts. Participants with lifelong disabilities should routinely receive plans lasting three to five years, with the flexibility to request an earlier review where circumstances change significantly. This approach would reduce unnecessary administration while allowing resources to be directed towards participants whose circumstances genuinely require reassessment.
Appropriate Treatment and Permanence
Relevant Bill provision: Amendments concerning the assessment of permanent impairment and the role of appropriate treatment when determining eligibility.
I am concerned that provisions relating to permanence and appropriate treatment may be interpreted as requiring participants to pursue every available treatment before their disability is considered permanent, creating uncertainty and unnecessary barriers to ongoing eligibility.
I am particularly concerned about any interpretation suggesting participants must undertake all available treatments before their disability can be considered permanent. For many disabilities there is no cure. Autism is lifelong. Intellectual disability is lifelong. The purpose of therapy is not to remove disability but to maximise independence, wellbeing and quality of life. Families should never feel pressured into pursuing unnecessary, burdensome or ineffective interventions simply to demonstrate eligibility for support. The legislation should clearly state that “appropriate treatment” does not require exhausting every possible therapy and that declining burdensome treatment should never jeopardise access to the NDIS.
Participants Should Not Be Penalised by System Boundaries
Relevant Bill provision: Amendments clarifying interaction between the NDIS and mainstream service systems and requiring supports to be more clearly attributable to NDIS responsibilities.
I am concerned that amendments clarifying the responsibilities of the NDIS and mainstream service systems may increase disputes over funding responsibilities, resulting in participants experiencing delays or loss of essential supports.
One of the most common challenges I encounter as a Coordinator is navigating the boundaries between government systems. Health says the issue belongs to disability. Disability says it belongs to health. Housing refers participants elsewhere. Mental health services apply different eligibility criteria. Education has separate responsibilities again. Meanwhile, participants and families are left waiting. People with disability should never lose essential supports simply because governments disagree about which department should fund them. The Scheme should continue to prioritise participant outcomes over jurisdictional disputes.
Fraud Prevention
Relevant Bill provisions: New compliance, fraud prevention and information gathering powers intended to improve Scheme integrity.
Submission: I support stronger fraud prevention measures. However, these provisions should focus on provider accountability rather than increasing administrative obligations on participants. To achieve the Bill’s objective of protecting Scheme sustainability, I recommend:
mandatory registration of all NDIS providers; mandatory NDIS Worker Screening Checks for all support workers; regular provider compliance and quality audits; stronger NDIA provider vetting before providers enter the Scheme; and a tiered support worker framework aligned with the SCHADS Award and pricing arrangements, ensuring qualifications, competencies and remuneration reflect the complexity of supports delivered.
These measures would better protect participants, reduce opportunities for fraud, improve service quality and reduce long-term Scheme expenditure while avoiding unnecessary compliance burdens on participants and families.
I strongly support robust measures to prevent fraud and misuse of NDIS funding. Every dollar lost to organised fraud is a dollar unavailable to participants with genuine disability needs.
However, the most effective way to reduce fraud and unnecessary expenditure is to strengthen the regulation and oversight of those delivering supports, rather than placing additional compliance burdens on participants and families who are already navigating an increasingly complex Scheme.
Mandatory registration of all NDIS providers should be considered, regardless of the services they deliver. Every support worker should hold an appropriate screening clearance, and providers should be subject to regular compliance audits and quality assurance checks to ensure participant safety and service integrity.
In addition, the NDIS should introduce a tiered workforce framework that recognises different qualifications, competencies and responsibilities of support workers, aligned with industry standards such as the SCHADS Award. This would create clearer career pathways, establish consistent minimum standards, improve workforce capability, and ensure pricing better reflects the complexity and skill required for different levels of support.
Strengthening provider vetting, workforce standards and regulatory oversight would significantly reduce opportunities for fraud, improve participant safety, increase accountability, and deliver better value for taxpayer investment.
The overwhelming majority of participants and families are honest people seeking only the supports they need to live ordinary lives. Compliance efforts should focus on deliberate fraud and poor provider practices, rather than increasing administrative requirements for participants who are already under considerable pressure.
Automated Decision-Making
Relevant Bill provision: Amendments permitting increased use of automated administrative processes and digital decision-making.
Technology has an important role in improving efficiency. However, disability is deeply personal. No automated system can fully understand the complexity of a participant’s circumstances, cultural background, family situation or fluctuating functional capacity. Participants must always retain access to meaningful human review, transparent explanations and accessible appeal processes. Efficiency should never replace fairness .
The Reality Facing Families
Beyond my own family, I see the realities faced by hundreds of others through my work and volunteer roles. Many families are already living below or close to the poverty line. Parents regularly survive on very little sleep because their children require constant supervision overnight. Some families cannot safely take their child into the community because behaviours associated with disability place everyone at risk. Many parents have left employment because suitable supports simply do not exist. Others juggle multiple jobs while providing full-time unpaid care. These are not isolated stories. They are everyday realities. Families are not asking for luxury. They are asking for enough support to survive. Reducing flexibility within the Scheme risks pushing already vulnerable families beyond breaking point.
Families Living Under Constant Pressure
I am concerned that the Bill gives insufficient consideration to the critical role of unpaid carers and the potential for increased administrative requirements and reduced flexibility to contribute to carer burnout and family breakdown.
The emotional burden carried by carers is rarely visible. Many parents live with ongoing fear. Fear that funding will be reduced. Fear that support workers will leave. Fear that behaviours will escalate. Fear about what happens during the next crisis. Fear about the future. As a Coordinator of disability supports and Board Member of Camp Autism WA, I regularly meet families who tell me they do not know how much longer they can continue. Carer burnout is not simply an individual issue.
It has consequences for the participant, the family, the health system and the broader community. Supporting carers is an investment in participant outcomes.
Those Without Advocates
Relevant Bill provisions: Amendments increasing evidentiary requirements, planning processes and administrative decision-making.
I understand the NDIS because I work within it. Many people do not. Every week I meet participants and families who struggle to understand the language, processes and evidence requirements of the Scheme. Some have limited literacy. Some have cognitive impairment. Some speak English as an additional language. Others are simply overwhelmed. Without advocacy, many participants become lost in a system they cannot understand. A Scheme founded on choice and control must also ensure people can genuinely exercise those rights. The participants who most need support are often the least able to advocate for themselves. The legislation should recognise this reality.
Conclusion
I did not write this submission as a politician, lawyer or policy expert. I write it as a mother who has spent a lifetime loving, advocating for and fighting beside her son. I write it as a disability professional who sees the reality faced by participants and families every day. I write it as a volunteer, a board member, and someone who has believed in the promise of the National Disability Insurance Scheme since its earliest days. When the NDIS was introduced, it represented something extraordinary. It acknowledged that Australians with disability deserved not just care, but opportunity, dignity, choice and inclusion. It recognised that investing in people with disability was an investment in stronger families, stronger communities and a stronger nation. This Bill risks moving us away from those founding principles. Throughout this submission I have outlined concerns about the cumulative effect of the proposed amendments. While each individual change may appear administrative or reasonable in isolation, together they represent a significant shift towards restricting access, reducing flexibility, increasing bureaucracy and limiting the ability of the Scheme to respond to people’s changing lives. Disability does not wait for annual review dates. Autism does not follow a timetable. Mental health crises do not occur according to administrative schedules. Families cannot simply “pause” while government processes catch up.
My own son Jack is living proof of this reality. During periods of transition his functional capacity can deteriorate rapidly. Skills that have taken years to develop can disappear in weeks. Continence, communication, emotional regulation, community participation and personal safety can all decline suddenly. When these changes occur, support needs increase immediately—not months later after reassessment processes have concluded. This experience is not unique. Every week through my professional role and volunteer work I meet families experiencing similar situations. Parents who have not slept for years. Families living in fear inside their own homes because behaviours have escalated beyond what they can safely manage. Carers whose own physical and mental health has deteriorated while they wait for decisions. Participants who lose employment, education or community connections simply because essential supports cannot be adjusted quickly enough. Behind every funding decision is a real person. Behind every delayed reassessment is a family trying desperately to hold things together. Behind every policy amendment are consequences that extend far beyond a government budget. I am equally concerned for those families who have no voice. Many Australians living with disability do not have experienced coordinators, advocates, lawyers or organisations supporting them. They do not understand complex legislation or administrative processes. English may not be their first language. Some are elderly parents caring for adult children while wondering who will care for them when they are gone. Others are isolated, exhausted or simply overwhelmed. These Australians deserve legislation that protects them, not systems that become increasingly difficult to navigate. The true measure of a society is not how efficiently it administers government programs, but how compassionately it supports those who need them most. Financial sustainability of the NDIS is important. No participant disputes that public money should be spent responsibly. Waste, fraud and poor-quality providers should absolutely be addressed. However, sustainability cannot come at the expense of fairness, flexibility and human dignity. Cost control should never mean denying people the supports that prevent crisis, hospitalisation, homelessness, family breakdown or institutional care. Investment in early intervention, preventative supports and flexible planning is not wasteful spending—it is responsible spending. It saves money in the long term while preserving quality of life. I respectfully ask the Committee to carefully consider the lived experience of participants and families before recommending these amendments proceed. I ask that you strengthen protections around participant rights. I ask that you retain flexibility within planning processes. I ask that you ensure reassessments can occur whenever circumstances genuinely change. I ask that you preserve independent review and procedural fairness. Most importantly, I ask that every decision be viewed through the eyes of the Australians who will live with its consequences every single day.
The NDIS has transformed thousands of lives, including my son’s. It has given hope where there was once despair and opportunity where there were once only limitations. It remains one of Australia’s most significant social reforms. Please do not allow incremental legislative change to erode what generations of Australians fought so hard to create. The people affected by this legislation are not numbers on a spreadsheet. They are our sons and daughters, our brothers and sisters, our neighbours, colleagues and friends. They deserve a Scheme that remains responsive, compassionate and centred on human rights. I urge the Committee to recommend substantial amendments to this Bill and to work alongside people with disability, their families and the organisations that support them to ensure the future of the NDIS reflects its original purpose: empowering Australians with disability to live ordinary lives with extraordinary opportunities. Thank you for considering my submission and for taking the time to listen to the voices of those who live the reality of disability every day. I sincerely hope these experiences assist the Committee in protecting the future of the National Disability Insurance Scheme for current participants, future generations and the families who stand beside