Submission 67
Submission to the Senate Community Affairs Committee
Inquiry into the Securing the NDIS for Future Generations Bill 2026
Submitted by: Anonymous
Date: 20.05.2026
I am making this submission anonymously to protect the privacy and identity of my adult son.
This submission relates specifically to concerns regarding the proposed National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026, particularly proposed changes relating to functional assessment, “appropriate treatment”, administrative discretion, funding flexibility, removal of safeguards, impairment-based assessment frameworks and the increasing separation between health and disability supports.
My Son’s Disability and Support Needs
I am writing this as the mother of an adult son with severe psychosocial and neurodevelopmental disability.
I am absolutely terrified about the direction the NDIS is heading and what these proposed reforms could mean for people like my son.
My son is not someone who neatly fits into a box or checklist. He lives with autism, schizophrenia, ADHD, PTSD, intellectual impairment, major executive functioning difficulties, emotional dysregulation, severe sleep disturbance, vulnerability to exploitation and very poor insight into his own deterioration. He has required 24/7 support for years just to remain safe, housed and stable in the community.
Multiple psychiatrists over many years have documented his severe functional impairment and ongoing need for intensive support. Despite every support possible, he still cannot safely manage large parts of daily life independently.
Concerns Regarding Legislative Powers and Future Interpretation
I understand the government states these reforms are about sustainability. However, legislation must also be assessed according to the powers it creates and the protections it removes, not only the intentions stated at the time of introduction.
What terrifies me is not only what is explicitly written in the Bill, but what the legislation appears to enable over time through rules, assessments, administrative interpretation and future decision-making.
Mental Health vs Disability
My son’s disability cannot be separated into neat categories of “mental health” versus “disability.” His schizophrenia affects his executive functioning. His autism affects his flexibility, coping and emotional regulation. His trauma affects his relationships and
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emotional safety. His cognitive impairments affect judgement, planning, reasoning and decision-making. Everything overlaps.
His impairments are not theoretical. They affect whether he eats properly, takes medication safely, manages appointments, recognises deterioration, avoids exploitation, regulates emotions, maintains housing, engages with supports and survives periods of crisis.
Concerns Regarding Multiple and Interconnected Disabilities
I am also very concerned about the apparent move toward impairment-based access and assessment frameworks.
My son does not have one single disability that can realistically be separated from the others. His autism, schizophrenia, executive functioning impairment, trauma, emotional dysregulation and cognitive difficulties all interact with each other constantly and together create the level of disability and support needs he experiences day-to-day.
From reading the Bill and Explanatory Memorandum, I worry there is increasing movement toward separating impairments into categories and only recognising supports that directly relate to specific recognised impairments. While the legislation may not explicitly say only one disability will be funded, some of the examples provided create concern that certain impairments may be recognised while others may effectively be excluded or minimised.
For people with multiple and interconnected disabilities, this creates a very real worry that their support needs could become fragmented or artificially separated in ways that do not reflect how disability actually works in real life.
People like my son do not experience their disabilities one at a time. The combined impact of all of his impairments is what creates his severe functional limitations and ongoing need for intensive support.
Concerns Regarding Functional Assessments
I am very concerned about the move toward standardised functional assessments and narrower interpretations of support needs.
My son often presents very differently depending on the day, his level of distress, whether he trusts the assessor, whether he is masking, withdrawn or overwhelmed. Snapshot assessments do not capture the reality of people with fluctuating psychosocial and executive functioning impairment.
People like my son cannot be safely assessed by checklists, algorithms or brief functional snapshots.
Concerns Regarding “Appropriate Treatment”
I am also extremely concerned about the proposed focus on “appropriate treatment” and the increasing separation between health and disability.
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My son has already endured years of hospitalisation, treatment authorities, medications, trauma and severe side effects. Some treatments have not proceeded because of genuine medical and safety concerns, not simple refusal.
Families reasonably worry that wording around “appropriate treatment” may unintentionally create situations where people with the most complex psychosocial disabilities are viewed as insufficiently treated, non-compliant or not disabled enough if they cannot tolerate, access or safely undertake certain interventions.
Removal of Safeguards and Section 31 Concerns
I am also concerned by the removal of existing safeguards and principles from legislation, including Section 31 principles.
While these provisions may appear administrative, principles sections matter because they guide how planners, reviewers, tribunals and future decision-makers interpret the Scheme over time.
Broad Discretionary Powers and Funding Uncertainty
I am also concerned about the apparent contradiction between individualised assessment processes and the proposed broad discretionary funding powers within the legislation.
During public discussion of the reforms, questions have been raised about how participant budgets can supposedly be determined through assessment of individual support needs, while at the same time broad powers appear to exist allowing reductions or limitations for broader financial sustainability reasons.
As a parent, this creates enormous uncertainty and insecurity. Families are being told supports will remain individualised and needs-based, while the legislation simultaneously appears to create mechanisms allowing increasing administrative discretion and broader funding limitations over time.
For families caring for people with severe and lifelong disability, certainty and stability are critical. The worry is not only about immediate changes, but about what future governments, policies, rules or administrative interpretations may do with powers once they exist in legislation.
Cumulative Impact of the Reforms
My concern is the cumulative effect of:
- tighter definitions,
- increased discretion,
- greater administrative power,
- standardised assessment models,
- reduced flexibility,
- capped growth targets,
- and shifting responsibility toward families and “foundational supports” that may not yet exist or may be inadequate for people with severe and complex disability.
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Families like ours already live under relentless pressure trying to prevent crisis, hospitalisation, homelessness, exploitation, service breakdown and deterioration. We are already functioning far beyond what is sustainable.
Every time supports reduce or systems become harder to navigate, the burden does not disappear. It shifts onto ageing parents, exhausted carers, emergency departments, police, hospitals and families already barely holding things together behind closed doors.
Executive Functioning and Real-World Disability
I also worry these reforms fundamentally underestimate executive functioning impairment. My son may sometimes verbally sound capable for short periods, but this does not translate into an ability to consistently manage life safely. The gap between appearing capable and actually functioning safely day-to-day is enormous.
Public Rhetoric, Fraud Messaging and Stigma
I am also extremely concerned about the growing public rhetoric surrounding the NDIS, particularly repeated messaging around fraud, overspending and sustainability.
As the mother of a person with severe disability, it feels like people with disability are increasingly being spoken about as financial burdens or system problems rather than vulnerable human beings requiring support.
My son already lives with significant stigma due to diagnoses such as schizophrenia, and this has already affected the way he is perceived and responded to in the community, including during interactions involving police. I worry the current public and political narrative risks further increasing fear, mistrust and negative assumptions toward people with disability, particularly those with complex psychosocial conditions.
I also believe it is important to distinguish between deliberate fraud and broader “leakage” figures which may include administrative errors, overpayments or unintentional spending. Public discussion often does not make this distinction clear, and this can create a perception that widespread intentional misuse by participants themselves is driving reform.
Whether intended or not, the cumulative effect of repeated messaging around fraud, cost blowouts and sustainability risks creating a social environment where disabled people are increasingly viewed with suspicion and where the public becomes more accepting of reduced supports, tighter eligibility and weaker safeguards.
This is particularly frightening for families caring for people with severe and lifelong disability who already struggle daily against stigma, misunderstanding and system failures.
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Recommendations
As a mother caring for an adult son with severe and complex disability, my recommendations are very simple.
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Please do not reduce people like my son to checklists, algorithms, categories or simplified functional assessments that fail to capture the reality of how severe disability actually presents in day-to-day life.
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Please ensure psychosocial disability, executive functioning impairment, trauma and fluctuating conditions remain properly recognised within the NDIS and are not minimised through narrow interpretations of “functional capacity” or “appropriate treatment.”
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Please retain strong legislative safeguards and principles within the Act itself, rather than shifting increasing power into rules, discretion or future policy interpretation.
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Please ensure people with multiple and interconnected disabilities are assessed holistically, not as isolated impairments that can be separated from each other on paper but not in real life.
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Please ensure that any future reforms genuinely consider the realities faced by families already living under enormous pressure trying to keep vulnerable people safe, housed and alive in the community.
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Please stop framing disability primarily through cost, fraud and sustainability messaging without equal acknowledgement of the human beings behind those discussions. The public narrative matters, and it affects how people with severe disability are viewed and treated.
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Most importantly, please listen carefully to families, clinicians and disabled people themselves before creating systems that may unintentionally push the most vulnerable participants further into crisis, hospitalisation, homelessness, isolation or contact with emergency systems.
People with severe and lifelong disability do not become less disabled because supports become harder to access.
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In Closing
Please understand that my son did not suddenly become disabled as an adult.
He was an autistic child with significant learning difficulties, emotional dysregulation, social difficulties and functional impairments that were never properly recognised or adequately supported early enough. Much of his childhood felt like constantly slipping through gaps in systems that either missed what was happening or did not understand the complexity of it.
As his mother, I have spent his entire life fighting for him, trying to protect him, trying to get people to listen and trying to stop him from falling through the cracks.
I honestly feel like I have spent years watching what happens when vulnerable autistic children and young people are not properly identified and supported early enough. Now as an adult, the consequences of that are enormous.
That is another reason these reforms terrify me so much.
Without appropriate support, many vulnerable autistic children do not simply “grow out” of disability. Many eventually become adults like my son — traumatised, socially isolated, unable to function independently and reliant on very high levels of ongoing support just to survive safely in the community.
One day his dad and I will be gone, and the reality is my son has no support outside of the NDIS. That is the part that terrifies me the most.
My son is not rorting the system. He is not a statistic or financial burden. He is a severely disabled person who, without proper support, is extremely vulnerable to deterioration, exploitation, homelessness, hospitalisation and serious harm.
Please remember there are families behind these submissions who are exhausted, terrified and trying every single day to keep the people they love safe and alive.
Please do not create a system where the most vulnerable people quietly disappear because they are too complex or too difficult to fit into simplified systems.
Please help keep people like my son safe.
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