National Disability Insurance Scheme Amendment Submission

Submission: 2198 Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600

Submission to the Inquiry into the National Disability Insurance Scheme Amendment Securing the NDIS for Future Generations Bill 2026 Dear Committee Secretary,

Please accept this short submission regarding the NDIS Future Generations Bill 2026.

I am writing to you today as a carer and single mother of two young adults with disabilities (also previously caring for late partner who passed from multiple myeloma). Until April last year was also ‘sandwiched’ between managing/caring elderly parents living regional Victoria - over hours drive place residence. As can see has been significant burden sole carer so grateful thus far support provides family In summary points would like considered:

Household impact As lone parent carer NDIS vital our small household function without scheme’s essential support allows manage day-to-day life I extremely worried about future holds daughters ability live independently recent announcement proposed changes already affecting their mental physical health contributing increased stress household ability manage as carer past plan reviews proved limited functional capacity contributed suicidal ideation self-harm. ### Carer impact Concern how will manage if no longer have access scheme What happen them when age eventually pass on need know that daughters supported society independent me not here care achieve.

National Disability Insurance Scheme Amendment Bill Submission

In addition, many carers of people with disabilities (mostly women) are already struggling. Not do we provide many unpaid hours to society, too but experience fatigue due to our role’s nature without access scheme uncertain future care face real possibility:

• Carer burnout burden health welfare system individual needs increase. Reduced earning income resulting further cost-of-living pressures now into future. Social isolation declining physical mental health wellbeing limited participation workforce community. Gender inequity inclusion supports loved ones unable contribute participate in civic life robbing unique perspectives lived experiences that bring disability carers.

Functional Capacity Definition Assessment I deeply worried blanket rule remove certain number NDIS considering professional assessment subject matter expertise clinicians treating team short-sighted.

The scheme review overhaul current participants should not penalised especially when alternative systems support divert them does exist bill’s proposed changes enacted until these clarified includes lack transparency definition functional capacity nuances process. The process prove ‘functional’ cumbersome costly time-consuming equitable for many participants their carers waiting six months additional condition added daughter plan review out pocket $1000 supporting documents may knocked back Her functional capacity expired lengthy process another drafted at the expense. Other issues before passing this bill include better awareness recognition dual/multiple diagnoses participant/potential limitations accessing clinician funding required paperwork meet NDIA requirements flexible approach (‘one size doesn’t fit all’) - conditions and capacities can change Plans need age developmentally appropriate particularly case young people grow develop children adults treatment 2

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

Submission 2198

Support options adaptability in response to new diagnoses limiting functional capacity.

Support options must evolve when new genetic conditions emerge due to limitations imposed upon current NDIA processes where bureaucrats decide whether plans/reviews are accepted or declined based solely on evidence from clinical experts.

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

Submission 2198

Improving NDIS equity

Instead of punishing participants, develop innovative cost-saving solutions such as better checks and balances, procurement of service providers and their fees. Investigate ways to provide equitable access to the scheme, such as assessing participant supports already in place or means testing participation.Surely, a two-parent household with higher income-earning capacitycaring taking care of one person would have greater access to supports than a single participant or a single parent/carer who has limited income- ing earning capacity and is caring for more than one person`. While I understand the need to secure the NDIS for the future any changes should be developed with people with lived experience We must protect long-term independence safety vulnerable participants We need system that gives families certainty not leaves us anxious about how our children will survive without us A fair system should ensure everyone same chance belong contribute rather forcing family into isolation Thank you taking time read my submission listening families rely on this every day Kind regards Carer constituent Ascot Vale PS: apologize standard submission unable provided succinct response due rushed bill through Parliament.