NDIA Accountability Project

Caring for an infant with severe Cerebral Palsy within a multiple birth family

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To the Committee,

I am writing as the parent of a 9-month-old infant with significant and permanent disability arising from neurological injury and Cerebral Palsy.

My daughter has complex medical and disability needs. She has experienced respiratory and cardiac arrest events, requires enteral feeding via tube, has a history of seizures, significant neurological impairment, developmental delay, and requires intensive daily care, therapy, monitoring and clinical support. Her disability is not temporary. It is permanent, significant and impacts every aspect of her daily functioning.

While I support efforts to protect the NDIS from fraud and ensure sustainability, I am deeply concerned that aspects of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 may unintentionally place children like my daughter at risk.

The Bill proposes changes to eligibility, functional capacity assessments, planning processes and the consideration of alternative service systems. I am concerned these changes may create additional barriers for infants and young children with profound disabilities whose future support needs cannot always be fully measured through standardised assessment tools alone.

One of the most important considerations for the Committee is the reality that disability doest not occur in isolation from family circumstances.

My daughter is one of 3 triplet girls. Caring for an infant with severe Cerebral Palsy and complex medical needs while also raising her two infant sisters and older sibling places extraordinary physical, emotional and financial strain on our family. Unlike families caring for a single medically complex child, the demands of meeting the developmental, emotional and physical needs of multiple babies simultaneously are significantly amplified.

    requires intensive daily care including enteral feeding management, therapy,

positing, seizure monitoring, medication administration and constant supervision due to her history of respiratory compromise and medical instability. These supports are required in addition to the ordinary care needs of two other infants the same age.

The realities of caring for triplets means there is no ability to “pause” the needs of the other children in order to meet ’s disability-related needs. Without adequate NDIS support, families like ours face increased risk of caregiver burnout, mental health deterioration, financial hardship and breakdown of informal supports.

It is critical that the NDIS continues to recognise the real-world context in which disability exists. Functional assessments that focus solely on the child in isolation may

fail to capture the intensity and complexity of caring for a child with profound disability within a multiple birth family.

For our family, NDS supports are not about convenience — they are essential to maintaining ’s safety, supporting her development, preserving family functioning, and ensuring all of our children have the opportunity to thrive.

Children with complex neurological conditions often present with evolving needs. Functional assessments undertaken at a single point in time may not accurately capture the intensity of care required to keep a child safe, medically stable and able to participate in family and community life. My daughter’s care involves ongoing therapy, feeding management, seizure monitoring, positioning, developmental support and constant supervision due to significant medical risks.

I am particularly concerned about:

  • Increased reliance on standardised functional capacity assessments as a primary determinant of access and support levels.

  • Any reduction in the ability of treating specialists and multidisciplinary teams to provide evidence regarding a participant’s needs.

  • Provisions that may allow consideration of other service systems in place of NDIS supports, particularly where state health services are not designed or funded to provide the long-term disability supports required by children with permanent disabilities.

  • Restrictions on plan reassessments and review processes which may reduce the ability of families to respond to rapidly changing needs during infancy and early childhood.

  • Any reforms that prioritise cost containment over individualised assessment of disability-related support needs.

The first years of life are critical for neurodevelopment. Access to physiotherapy, opthalmology, speech pathology, assistive technology and disability supports during infancy has the potential to maximise function, reduce complications and improve lifelong outcomes. Delays or reductions in support during this period may lead to preventable deterioration and greater long-term costs to both families and government.

My daughter deserves the same opportunity as every Australian child to reach her developmental potential, participate in family life and access evidence-based supports that respond to her disability. The NDS was established to support Australians with permanent and significant disability. Children with severe Cerebral Palsy and complex medical needs represent exactly the cohort the Scheme was designed to protect.

I urge the Committee to ensure that any legislative reforms preserve strong protections for infants, children and adults with permanent and significant disabilities, maintain the role of clinical evidence in decision-making, and safeguard access to early intervention and lifelong disability supports.

The future sustainability of the NDIS must not come at the expense of the safety, wellbeing and development of children with the highest levels of need.

Thank you for considering this submission.