National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1238
To whom it may concern,
I am writing this submission both as an Allied Health Professional who has observed the evolution of the National Disability Insurance Scheme since its inception, and as a parent raising a child with profound disability, complex medical needs, and developmental and epileptic encephalopathy (DEE).
From both professional and lived experience, I hold deep concerns regarding proposed legislative changes that seek to tighten the interpretation of “parental responsibility” within the NDIS framework.
These proposed reforms are not simply administrative or semantic changes. They have serious human consequences for disabled children, their families, siblings, carers, and the broader Australian community.
Over the years, I have witnessed what becomes possible when children and adults with disability are appropriately supported. I have seen children communicate for the first time, families remain intact under immense pressure, carers return to work, siblings regain stability, and individuals participate more meaningfully within their communities.
I have also witnessed the increasing erosion of these supports and the growing expectation that families absorb more and more complex care with fewer resources, less respite, and diminishing recognition of the realities of disability care.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1238
The current proposal to redefine or narrow what constitutes “reasonable parental responsibility” is deeply concerning because it fundamentally misunderstands the nature of caring for children with profound disabilities and complex medical conditions.
Families caring for children with significant disability are not simply undertaking ordinary parenting tasks. Many are already functioning as unpaid nurses, behavioural clinicians, manual handling supports, medication administrators, seizure responders, care coordinators, therapists, advocates, and case managers around the clock.
This level of care often includes seizure monitoring and management, tube feeding, medication administration, manual handling, behavioural regulation, sleep deprivation over many years, communication support, and constant supervision to maintain safety.
Redefining this reality as “ordinary parenting “ does not reduce the care burden. It simply shifts more responsibility onto already exhausted families while reducing access to the supports required to safely sustain care.
These reforms risk creating devastating unintended consequences.
When formal supports are reduced, families do not suddenly require less care. Instead, the burden transfers into homes and communities already functioning at capacity.
The impacts of this are predictable.
Increased carer burnout.
Deterioration in parental mental health.
Increased family breakdown.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1238
Reduced workforce participation.
Housing instability.
Increased presentations to emergency departments and hospitals.
Greater strain on schools, healthcare systems, child protection systems, and mental health services.
Increased risk of neglect, trauma, and unsafe situations developing within overwhelmed households.
Importantly, the impacts on siblings must not be ignored.
Siblings of children with profound disabilities often grow up exposed to significant medical trauma, chronic stress, hospitalisations, disrupted routines, emotional burden, and environments centred around survival rather than childhood. Many siblings learn early to suppress their own needs because the immediate focus must remain on crisis management and keeping their disabled sibling safe.
Without adequate supports, these risks intensify.
There are serious implications for sibling wellbeing, including chronic anxiety, emotional trauma, unintended neglect, and long-term psychosocial impacts that may persist into adulthood.
This is not solely a disability sector issue. It is a societal issue.
The measure of a society is reflected in how it protects its most vulnerable members, including disabled children and the families caring for them.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1238
Children with disabilities possess fundamental human rights, including rights to safety, healthcare, education, participation, development, dignity, and inclusion. These rights are recognised internationally under the Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities.
Policy reform must not move Australia backwards in its treatment of disabled children and families.
There must also be broader recognition that disability impacts entire communities. Friends, extended family members, educators, healthcare workers, workplaces, and community systems are all affected when families are left unsupported.
The downstream economic and social costs of reducing disability supports will likely far exceed any perceived short-term savings. Preventative and supportive systems are ultimately far more sustainable than crisis-driven systems.
I urge decision-makers to meaningfully consult with disabled people, carers, allied health professionals, clinicians, and families with lived experience before implementing reforms that may fundamentally alter access to supports.
Policy decisions affecting disabled children and vulnerable families must be informed by evidence, clinical realities, human rights principles, and genuine lived experience — not solely by cost containment measures.
A society that abandons disabled children and the families caring for them risks abandoning its own humanity.
Thank you for considering this submission.
Kindly,
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1238
Occupational Therapist and Mother to -