National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 137
Summary
This submission outlines concerns regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 from the perspective of a parent and full-time carer of two profoundly autistic, non-verbal children with extremely high support needs.
I am concerned that reforms focused heavily on cost containment and sustainability may unintentionally reduce, restrict, or destabilise essential supports for participants with profound disabilities, particularly those who cannot advocate for themselves.
This submission discusses:
• the importance of long-term intensive supports,
• the impact of workforce instability and loss of trusted therapists,
• caregiver burnout,
• the risks of reducing capacity-building and behavioural supports,
• and the broader human consequences of restricting access to support for profoundly disabled participants and their families.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 137
To the Senate Community Affairs Committee,
I am writing not as a policy expert, lobbyist, or organisation, but as a mother living the reality of what these proposed NDIS reforms will mean behind closed doors for families like mine.
I care full-time for two profoundly autistic, non-verbal children with extremely high support needs. My sons experience severe communication disability, sensory dysregulation, behavioural escalation, incontinence, absconding risk, emotional dysregulation, and significant safety impairments that require constant supervision and intervention.
Every single day in our home revolves around survival, safeguarding, regulation, therapy, crisis prevention, and exhaustion.
I recognise that all public systems require accountability and long-term sustainability. However, reforms must not disproportionately impact those with the highest and most lifelong support needs.
I need the Committee to understand something clearly:
For families like mine, these supports are not “extras.” They are not luxuries. They are not optional services that improve comfort.
They are the thin line between stability and collapse.
When governments describe these changes as “savings,” I ask honestly: who exactly is saving money when disabled children lose therapy, families break down under pressure, carers become physically and psychologically unwell, siblings are neglected by circumstance, and vulnerable children lose the few supports helping them function safely in the world?
Because the costs do not disappear. They are simply transferred onto families already drowning.
My sons cannot advocate for themselves. They cannot explain distress, fear, overwhelm, pain, confusion, or trauma in words. They rely entirely on the adults and systems around them to protect them, support them, and preserve their quality of life.
Participants who are non-verbal or profoundly communication-impaired are uniquely vulnerable because they often cannot independently report harm, distress, neglect, abuse, burnout, or deteriorating conditions within their support environments.
And yet increasingly, families like mine are being made to feel as though we must constantly justify our children’s humanity in economic terms.
We are forced to repeatedly prove that our children are disabled “enough.” Unsafe enough. Impaired enough. Complex enough. Costly enough.
There is something profoundly morally wrong about a system that requires families to live in perpetual crisis documentation simply to access basic support.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 137
In the last year alone, our family has experienced severe and escalating challenges, including:
• dangerous absconding incidents,
• significant property destruction,
• faecal smearing,
• severe PICA behaviours,
• intentional vomiting behaviours,
• hospitalisation,
• incontinence,
• sleep deprivation,
• emotional dysregulation,
• school impacts on siblings,
• and extreme caregiver burnout.
Our household does not resemble the public’s simplified understanding of “autism.”
This is profound disability. This is round-the-clock care. This is vigilance that never switches off.
And despite this, supports continue to become harder to access, harder to justify, more adversarial, and increasingly unstable.
Families caring for profoundly disabled people are repeatedly asked to absorb more pressure, fewer supports, and increasing instability in the name of budget sustainability, while observing major spending increases elsewhere, including defence.
I fully acknowledge the importance of national security and responsible economic management. However, it is difficult not to feel that disabled Australians are increasingly being treated as financial burdens rather than essential members of the community deserving of long-term investment, protection, and care.
Recently, one of my son ’s most important therapists was let go due to NDIS-related funding instability and broader sector pressures.
I cannot adequately express the devastation this caused our family. I cried when I found out.
For many disabled children — particularly profoundly autistic children — therapeutic trust and consistency are everything. These are not interchangeable workers. They become part of a child’s emotional safety system. Losing them can destabilise progress built over years.
Children like my son do not simply “adjust” overnight to constant workforce disruption.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 137
The public conversation around the NDIS often focuses on fraud, overspending, sustainability, or budget repair, while families like mine are quietly absorbing the emotional and physical consequences of these narratives.
But I ask the Committee:
Where is the conversation about the cost of unsupported disability?
What is the economic cost of:
• parent burnout,
• mental health collapse,
• family breakdown,
• hospitalisation,
• crisis intervention,
• educational disengagement,
• long-term institutionalisation,
• homelessness,
• unsafe environments,
• or carers leaving the workforce permanently because adequate supports no longer exist?
Because those costs are real too. And they are often far more expensive — both financially and morally.
Effective disability support is not only compassionate — it is preventative. It reduces crisis escalation, protects family stability, and prevents far more costly interventions later.
The current climate is creating fear amongst families of profoundly disabled people. Fear that essential supports will disappear. Fear that therapies will become inaccessible. Fear that children with the highest needs will once again be hidden away, unsupported, and isolated because their care is considered “too expensive.”
In periods of economic and geopolitical uncertainty, it is often vulnerable communities who absorb the consequences first. I believe disability support must remain a protected social priority, not an area repeatedly targeted for restriction while other forms of expenditure continue to expand.
Regardless of broader geopolitical pressures or international expectations around defence spending, I do not believe the safety, dignity, and essential supports of profoundly disabled Australians should become negotiable or secondary.
I ask this Committee to remember that disabled people are human beings, not budget burdens.
The value of a child’s life, safety, dignity, communication, regulation, participation, and wellbeing cannot be measured purely through fiscal modelling.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 137
A civilised society should be judged by how it treats its most vulnerable people.
At the moment, many families do not feel protected by this system. We feel scrutinised by it. We feel exhausted by it. And increasingly, we feel failed by it.
Recommendations
I respectfully urge the Committee to ensure that any future NDIS reforms:
• preserve access to intensive, long-term supports for participants with profound and lifelong disabilities, particularly non-verbal participants with complex behavioural and communication needs;
• protect continuity of therapeutic and support relationships, recognising that workforce instability and repeated support disruption can cause significant harm to profoundly disabled participants;
• avoid creating additional adversarial reassessment processes that place excessive administrative and emotional burdens on families already experiencing extreme caregiving pressure;
• preserve access to capacity-building supports, behavioural supports, communication supports, and therapies that prevent long-term crisis escalation and improve safety, participation, and quality of life;
• meaningfully consult families and carers of participants with the highest support needs before implementing reforms that may disproportionately impact profoundly disabled Australians.
I urge the Committee to genuinely listen to the lived experiences of families caring for profoundly disabled people before implementing reforms that may cause irreversible harm.
Because once supports disappear, the damage is not theoretical.
It happens quietly inside homes like mine — in exhaustion, crisis, burnout, instability, and children losing the supports that help them safely participate in the world.
Profoundly disabled people cannot afford to become collateral damage of reform.
Sincerely, Emily Scott