National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1443

I am writing in my capacity as the parent of a young child with a rare developmental and epileptic encephalopathy (DEE) leading to neurological, intellectual and physical impairments.

I am deeply concerned about the proposed reassessment provisions in section 48A of the Bill and how they will operate for children with severe lifelong disability whose support needs change gradually over time rather than through a single identifiable event.

My son is almost three years old and has significant disability and support needs. He cannot walk. Recently, the NDIA rolled over his plan without any meaningful consultation or check-in about whether his needs had changed. As a result, the only practical option available to our family was to lodge a change of circumstances / reassessment request.

The issue is that many support needs for children with neurological disability increase gradually as children grow. In our case, my son is becoming heavier and more difficult to safely carry and transfer, and he has not been able to learn to walk. This has major implications for manual handling, safety and the practical supports our family requires. These are very real and substantial changes in support needs.

However, under proposed section 48A, I am concerned these kinds of changes may not qualify for reassessment because they may not be viewed as:

• a “significant and ongoing” alteration in functional capacity under subsection 48A(2), or
• an “unanticipated, significant and ongoing” change in circumstances under subsection 48A(3).

The proposed provisions appear to assume disability is stable and that reassessment should only occur where there is a substantial deterioration in functional capacity. This does not reflect the reality for many children with DEEs and other disabilities that arise from neurological impairment, where support needs often increase over time because children grow, caregiving demands intensify and informal supports become unsustainable.

I am also concerned about the interaction between these reassessment provisions and the new plan renewal framework under section 50A. If plans are automatically renewed or rolled over without meaningful engagement with families, and reassessment pathways are simultaneously narrowed, families may be left without any realistic pathway to respond to genuine increases in support need.

The Bill should be amended to ensure reassessment pathways properly recognise:

• cumulative increases in support needs over time;
• caregiver sustainability and manual handling risks;
• progressive and fluctuating disability; and
• the realities of caring for children with severe lifelong neurological conditions.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1443

Without amendment, the proposed framework risks excluding families whose circumstances have clearly changed, simply because those changes do not fit a narrow model of measurable functional deterioration.