Submission 2559
Submission to the Senate Community Affairs Legislation Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026
My name is Zea and I am the mother and primary carer of my son, John who is a NDIS Participant. John is diagnosed with a severe intellectual disability and Autism level 3. He is non-verbal and requires full support in all aspects of his daily life, including but not limited to – behaviour support and management, personal care, communication support, constant supervision and community engagement.
I am writing this submission because I am deeply concerned and strongly disagree with the proposed changes contained within the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 and the impact these changes will have on children like my son who live with severe and complex disabilities.
John has significant and permanent disabilities that affect every aspect of his daily life. He requires constant supervision, extensive support with daily living activities, communication support, emotional regulation support, behavioural support implementation and ongoing assistance to ensure his safety and wellbeing.
He cannot advocate for himself. He relies entirely on the adults around him to ensure his needs are understood and met.
As his mother, I spend my life communicating with services, attending appointments, advocating across systems, managing crises and fighting to access the supports he requires. The NDIS has been critical in providing the disability-specific supports that allow John to participate in his community, access services and live with dignity.
This Bill moves the Scheme further away from individualised disability support and closer towards a system that prioritises administrative control, standardisation and cost containment over participant outcomes and people with disabilities are going to be the one’s most affected.
Standardised Assessments and Individualised Funding
I strongly oppose the proposal to move towards standardised assessments and funding decisions.
No two participants are the same.
Children with similar diagnoses can have vastly different support needs, communication abilities, safety risks, behavioural presentations and levels of dependence.
John’s disability cannot be accurately measured through simplified assessment tools or comparisons to other participants with similar impairments.
His support needs are highly individual.
Submission 2559
A standardised system risks overlooking these complexities and creating funding decisions that fail to reflect actual need.
I am concerned that decisions regarding functional capacity may increasingly be made through NDIA processes rather than relying on the expertise of treating professionals who know participants best.
The people who understand John’s needs are the professionals who work with him every day and the family who care for him around the clock.
I do not believe a standardised assessment process can adequately capture the complexity of his support needs.
Plan Reassessments and Change in Circumstances
I strongly oppose the proposal to change the criteria for plan reassessments and change in circumstances requests.
The proposed requirement that changes must be significant and ongoing before reassessment can occur creates serious risks for participants with escalating support needs and for children like John, it could mean life or death.
Waiting up to 90 days for a decision when a participant is already experiencing crisis or increased support needs is unacceptable.
Additionally, I strongly oppose the proposal that only participants or nominees may be able to initiate reassessment requests.
Families often rely heavily on Support Coordinators to gather evidence, communicate with professionals and navigate the NDIS process. I already suffer from an enormous amount of administrative burden; it is integral for the sustainability of John’s care that our Support Coordinator can continue to submit evidence and requests on our behalf.
Without that, I am unsure I would be able to do it myself without having a breakdown myself, compromising John’s safety and wellbeing as well as the sustainability of his care – which is lifelong. I am a single mother and cannot do it all. I already juggle much, much more than any other parent of a child his age would be expected to do.
Ministerial Powers
I strongly oppose the proposed expansion of ministerial powers relating to participant funding and access.
The idea that funding levels, access decisions and participant budgets may be altered through broad ministerial powers creates significant uncertainty for families already living with substantial stress and instability.
Families caring for children with high support needs and severe disability need consistency and security.
Submission 2559
We cannot effectively plan for our children’s futures if essential supports can be changed through broad powers without clear safeguards and accountability.
Plan Suspensions and Loss of Access
I strongly oppose the proposed plan suspension provisions.
The Bill appears to allow the NDIA to suspend plans after making “reasonable attempts” to contact participants, yet there is no clear definition of what constitutes reasonable contact.
Families caring for children with complex disability often spend their lives attending appointments, managing crises and responding to urgent situations.
What happens if:
a child is in hospital
a family misses correspondence
a phone number changes
a parent is overwhelmed by crisis
an email is overlooked
For participants like John, losing access to supports even temporarily could have devastating consequences.
Essential disability supports should not be placed at risk because of administrative processes. Especially if the NDIA expects plan nominees to have the capacity to take all these calls. I cannot always take calls or respond to emails when I am managing extreme behaviours, sleepless nights, illness and advocacy. All whilst trying to balance work, keep a roof over me and John’s head, put food on the table etc. This is another reason why a Support Coordinator for John is integral. They take the calls when I can’t, they answer the emails when I can’t. They are often my reminder to sign a service agreement, answer an email, respond to a service provider.
Mainstream Systems and Cost Shifting
The increasing expectation that participants must exhaust mainstream systems before receiving disability support is unrealistic and something I strongly disagree with.
In reality, many mainstream services are:
unavailable
unsuitable
financially inaccessible
overwhelmed by demand
operating with lengthy waitlists
Submission 2559
Families are already frequently pushed between health, education, disability and community systems, each arguing that responsibility lies elsewhere.
The result is not increased efficiency.
The result is families being left to fill the gaps.
Children like John require highly specialised disability supports that mainstream systems are simply not equipped to provide.
Parental Responsibility and Informal Supports
As the mother of a child with severe disability, extreme behaviours and high support needs, I am deeply concerned that the proposed reforms may further blur the distinction between ordinary parental responsibility and disability-related support needs.
While the Bill does not explicitly state that parents must provide more care, I am concerned that the increased emphasis on informal supports, family supports, mainstream systems and alternative service pathways will result in disability-related support needs increasingly being viewed as parental responsibility.
Parents of children without disability are expected to provide care, guidance and support as part of ordinary parenting.
However, the level of care required for a child like John goes far beyond what would reasonably be expected of any parent.
John requires constant supervision, support with communication, medical monitoring, behavioural support, implementation of behavioural strategies, coordination of multiple services, advocacy across systems and ongoing monitoring to maintain his safety and wellbeing.
These are not standard and ordinary parenting tasks.
These supports arise directly because of the severity of his disability.
When disability supports are removed, reduced or denied, the need does not disappear.
Instead, responsibility is transferred onto unpaid family carers who are often already operating beyond capacity.
I already provide care that many people would associate with multiple full-time roles. I am not only John’s mother. I am his advocate, his voice, appointment organiser, nurse, support worker, hairdresser, chef and primary protector.
Like many parents of children with severe disability, I have had to sacrifice financial security, personal wellbeing, family time, social connections and intimate relationships to ensure my son receives the support he needs.
The assumption that families can simply absorb additional caring responsibilities is unrealistic and unsustainable.
Submission 2559
The NDIS was established for people like John, because some disability support needs exceed what can reasonably be expected of families alone. John’s support needs are never going to change; they are only going to get more complex the older he gets and the sustainability of his care in the family home relies solely on the funded supports he receives through the NDIS. Without it, I will not be able to continue to care for John and he would have to be moved into out of home care and that is a decision that no parent wants to have to make. The only reason I have been able to continue to sustain his care at home is because of the consistent NDIS funded supports and the intensive support provided by our Support Coordinator to ensure that John’s support needs are recognised by the NDIS.
Fraud Measures and Privacy Concerns
I support efforts to reduce fraud within the NDIS. We know it happens.
However, the proposed compliance measures risk placing additional burdens on genuine participants and families and seem to target participants and families, rather than the providers that are targeting vulnerable people and siphoning funding.
The proposed expansion of powers to access personal information and conduct broad risk assessments feels disproportionate when applied to families who rely on disability supports for legitimate reasons.
Families caring for children with severe disability are already under significant administrative pressure.
We should not be treated as potential criminals simply because we access essential disability supports.
Additionally, Support Coordinators play an integral role in compliance and monitoring plan funding. My Support Coordinator has flagged mistakes in invoices and over charges. They ensure budget sustainability. Without his active support, John’s supports are at risk, because I do not have the time, ability or capacity to consistently monitor and oversee invoicing when I am already burdened by extensive care requirements.
Support Coordination and the Proposed Navigator Model
I strongly oppose proposals to replace individual Support Coordination with a Navigator style service model.
Families like ours do not need generic advice from a different person each time we seek help.
We need consistent people who:
understand our child
understand our risks
know our history
coordinate multiple systems
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mitigate and manage crises
communicate with professionals
help prevent breakdowns in care
protect our child against fraud
manage funding expenditure
flag concerns in invoices and budget utilisation
facilitate care team meetings
Support Coordination has been essential in helping our family navigate an incredibly complicated and overwhelming system and ensuring John’s funded supports are representative of his needs.
Support Coordination has been essential in helping our family navigate disability services, healthcare, education systems and the NDIS.
Conclusion
Throughout this Bill there appears to be an underlying assumption that families, informal supports and mainstream systems can absorb increasing levels of responsibility.
My experience as John’s mother tells me otherwise.
Families caring for children with severe disability are already carrying extraordinary responsibilities every day.
We cannot continue to be treated as an unlimited resource that can fill the gaps when disability supports are reduced or denied.
John is not a budget line, a funding package or a statistic.
John deserves safety, dignity, opportunity and the supports he needs to participate in life.
I urge the Committee to ensure that any reforms:
preserve genuine participant choice and control
maintain individualised assessments
protect access to timely reassessments
safeguard the role of Support Coordination
prevent inappropriate cost-shifting onto families
clearly distinguish parental responsibility from disability support needs
prioritise participant wellbeing and safety over administrative efficiency
Submission 2559
I ask the Committee to consider the real-world impact these reforms may have on children like John and the families who care for them.
Thank you for considering my submission.