Submission 2726
Submission to the Senate Community Affairs Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations)
Bill 2026
My name is and I am the mother and primary carer of my son, .I am writing this submission because I strongly oppose many of the proposed changes to the NDIS and the significant impact they may have on children with complex disabilities and their families.
is a six-year-old child with a complex disability profile involving neurological, developmental, sensory and functional challenges that significantly impact his ability to participate consistently and independently in everyday life.
He has undergone major neurosurgery for a Chiari Malformation and continues to experience significant functional challenges affecting his participation at school, within the community and at home. He experiences fluctuating capacity, chronic pain, fatigue, sensory difficulties, anxiety, emotional regulation challenges and significant support needs across multiple areas of daily life.
While may appear capable during brief interactions or in highly supported environments, this does not reflect the reality of his day-to-day functioning, the extensive supports required to maintain participation, or the impact his disability has on our entire family system.
One of my greatest concerns regarding the proposed reforms is that they fail to recognise the difference between what a child can occasionally achieve under ideal circumstances and what they can consistently and sustainably manage in real life.
Functional Capacity and “Substantially Reduced” Criteria
I strongly oppose proposals requiring participants to demonstrate “substantially reduced functional capacity” in order to access or retain NDIS support.
Children like often appear more functional precisely because they have received supports, therapies, accommodations and parental intervention.
His ability to attend school, participate socially, engage in learning and complete everyday activities depends heavily upon:
- ongoing therapy and intervention
- educational accommodations
- support workers and allied health professionals
- significant parental advocacy and coordination
- flexible participation expectations
- careful management of fluctuating capacity and support needs Without these supports, his functioning deteriorates significantly.
Submission 2726
I am deeply concerned that children who have made progress because of years of intervention may now be assessed as “not disabled enough” and risk losing the very supports that enabled that progress.
This creates a dangerous situation where successful intervention becomes the justification for reducing future support.
I am also concerned that decision-making regarding functional capacity may increasingly rely on standardised NDIA processes rather than the opinions of treating professionals who know the child best and understand the complexity of his presentation.
Invisible and Fluctuating Disability
One area of significant concern for our family is the risk that children with complex and fluctuating disabilities will be disadvantaged by increasingly standardised assessment processes.
’s disability is not always immediately visible.
His functional capacity can vary significantly depending on fatigue, sleep, sensory overload, pain levels, illness, environmental demands, stress and school expectations.
There are periods where he may appear to be coping reasonably well. However, these periods often occur because of extensive support, accommodations and parental intervention occurring behind the scenes.
Brief observations or standardised assessments may fail to capture:
- the cumulative impact of multiple challenges
- the support required to maintain participation
- the significant effort involved in daily functioning
- the recovery time required after activities
- the impact of fluctuating capacity on education and community participation Families caring for children with complex disabilities spend considerable time coordinating appointments, managing support providers, advocating within systems, adjusting schedules and preventing deterioration in functioning.
Much of this support remains invisible but is essential to maintaining stability.
Disability should be assessed in the context of real-world functioning and support requirements, not solely on performance observed during isolated assessments or brief periods of apparent stability.
School Participation and Educational Impact
School participation remains one of our greatest challenges.
experiences significant difficulties maintaining consistent participation in the school environment despite accommodations and support.
Submission 2726
His school regularly contacts me to collect him early due to difficulties including pain, fatigue, lethargy, reduced capacity to participate, sensory overwhelm, emotional dysregulation and challenges managing the demands of the school environment.
There are many days where simply does not have the same capacity as his peers despite desperately wanting to participate.
His school participation requires ongoing collaboration between family, teachers, therapists and support providers.
He requires accommodations and understanding to manage:
- fluctuating attendance and participation
- fatigue and reduced endurance
- sensory challenges
- anxiety and transitions
- emotional regulation difficulties
- learning support needs
- periods of reduced functional capacity Even with these supports in place, school participation remains fragile.
I am deeply concerned that increasingly rigid funding systems will fail to recognise the extensive work required simply to keep children with complex and fluctuating disabilities engaged in education.
Plan Reassessments and Change in Circumstances
I strongly oppose restrictions on reassessment pathways.
Children with complex disabilities do not have static support needs.
’s support requirements can change rapidly due to:
- developmental changes
- educational demands
- fluctuations in functioning
- periods of increased support needs
- changes in participation capacity Families should not be forced to wait months for support reviews when circumstances change.
The proposed reassessment limitations risk leaving children without appropriate support during critical periods of need.
Support Coordinators and allied health professionals must continue to be able to assist families in navigating reassessment processes and advocating for appropriate supports.
Support Coordination
Submission 2726
I strongly oppose the removal of Support Coordination as an individual support.
Our family relies heavily on Support Coordination to help navigate an extremely complex network of providers, therapists, educators and services.
Support Coordination assists us to:
- coordinate multiple providers
- communicate across systems
- implement and monitor supports
- respond to changing circumstances
- prevent service breakdown
- reduce family stress and burnout Families caring for children with complex disabilities do not need generic advice.
We need ongoing professional support from people who understand our child, understand our family and understand the complexity of navigating multiple systems simultaneously.
Replacing specialised Support Coordination with a generic navigator model would significantly reduce the effectiveness of support available to families like ours.
Participant Choice and Individualised Support
One of the strengths of the NDIS has always been participant choice and control.
I am concerned that increasing centralisation, standardisation and restrictions on provider choice undermine the principles upon which the scheme was built.
No government department, standardised assessment or algorithm can fully understand the needs of an individual child.
Families must retain the ability to choose providers who understand their child and can respond flexibly to changing needs.
Impact on Families
The proposed reforms appear to place greater administrative burdens on families while reducing flexibility and individualisation.
Families caring for children with disability are already managing:
- school advocacy
- therapy schedules
- support coordination
- provider management
- emotional support
- appointments
Submission 2726
- care planning
- significant financial and emotional pressures The ongoing responsibility of coordinating services, maintaining participation and preventing crisis places enormous pressure on families.
We do not need more barriers.
We need a system that recognises complexity, values lived experience and responds to real world needs.
Final Comments
is not a budget line or a standardised profile.
He is a bright, creative, resilient young boy who wants to participate in life alongside his peers but requires significant support to do so safely and consistently.
The progress he has made has only been possible because of the supports, therapies, accommodations and advocacy available through the NDIS.
I urge the Committee to carefully consider the unintended consequences these reforms may have on children with complex and fluctuating disabilities and their families.
I respectfully ask the Committee to:
- preserve individualised assessments
- maintain flexible reassessment pathways
- protect Support Coordination
- preserve participant choice and control
- avoid rigid standardised funding systems
- ensure functional capacity is assessed in context
- recognise fluctuating and invisible disabilities
- protect children with complex support needs from losing essential supports Children like deserve dignity, opportunity, support and the ability to participate meaningfully in life.
Thank you for considering my submission.
Kind regards,
Mother and Primary Carer of