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 this Bill regarding how they will operate specifically when dealing with children who have significant disabilities that change gradually rather than through one identifiable event due primarily because their condition is neurologically based which means it’s likely to get worse or more complex progressively instead being something like an accident where you can see exactly what happened,

My son almost three years old has significant disability & support needs he cannot walk recently NDIA rolled his plan without any meaningful consultation or check-in whether his needs had changed As result our family was left no other option but lodge a change circumstances /reassessment request The issue many support needs increase over time as kids grow In case mine becoming heavier difficult safely carry transfer unable learn Walk This major implications manual handling safety practical supports family requires These very real substantial changes need recognize under proposed section 48a I’m worried these kinds may not qualify re-assess because they might be viewed neither:

• “significant ongoing alteration” functional capacity subsection(2) or an “unanticipated” significant ongoing change circumstancesubsection3). The proposed provisions appear assume stability disability should only occur there’s deterioration functionally. Does reflect reality for many DEEs other conditions arise from neurological impairment where support needs often increases because kids growing caregiving demands intensify informal becomes unsustainable. I also concerned interaction between reassessment provisions new renewal framework Section50A If plans automatically renewed rollover without engagement families simultaneously narrowed, families may be left with realistic pathway respond genuine increases in support need. Bill amended ensure reassessment pathways properly recognise cumulative increases supporting needs over time caregiver sustainability and manual handling risks progressive fluctuating disabilities realities caring children severe lifelong neurologica

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.