National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2040
Submission – Senate Inquiry into the National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026
Introduction
I am writing as both an NDIS participant living with Multiple Sclerosis (MS) and as the parent of a child with Autism Spectrum Disorder (ASD). The submission reflects my personal experience of the NDIS and my concerns about how the proposed legislative changes may impact both my own future and my child’s development, safety, and long-term independence.
What the NDIS means to me and my family
The NDIS has been essential in enabling both myself and my child to maintain and build intependence, functioning, and participation in everyday life. For me, as someone living with MS, access to preventative supports, particularly allied health, has allowed me to maintain my functional capacity, delay disease progression, and remain active in myfamily and community.It has also enabled me to remain active in full time work.For my child,access tocapacity-building supportssuch astherapyandsocialparticipationhas resultedin measurable anda meaningfull improvements incommunication,economic regulation,social engagement,and overall wellbeing ,an willsupport his abilityto entertheworkforceinthefuture.WithouttheNDIS,bothofuswouldbesignificantlymore reliant oncrisis-basedhealthsystemsand informalsupports,wit muchpoorerlong-termm outcomes.##### Concernsabouttherproposedchanges1.Shift toward shortterm cost reduction over long term outcomesthe propoed reforms appear topriorise reducing expenditure an controlling scheme growth.My concern is that limiting accessto preventativ和支持may reducetshort- tm costs butwill increase lontermexpenditure through:‣increased hospitalisations‣loss offunctional capcity‣greater relianceon intensive supporst‣higherlnterms care needsPreventative supportis not optional; it isthewhat prevents deterioration.
Changes t the definition o “permanence”
The proposed changes indicatethat participants may be requiredt exhaust all available treatment options before being considered eligible or continuing ton qualify for thenDIS.This raises serious concernsfor both MS and autism:## Page
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2040
- For MS: MS is progressive and unpredictable. Treatment does not eliminate disability; it only slows progression. Requiring “all treatments” to be exhausted misunderstands the nature of the condition and may delay or restrict necessary supports.
**For autism: Autism is lifelong.“ It is not something that can be treated away Supports build skills they do not remove the underlying condition.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2040
- regression in communication & emotional regulation
increased_social isolation
greater long-term support needs Social & community participat&n supports are n’t discretionary; they r essential f inclusion, mntal halth,&dvelopment.
Impacts o self-management an participant control As a self-managed particpant,flexibility has been central t establishing stable,effective suppor ts.The proposed changes raise concerns about:
increased administrative burden -reduced flexibility restrictions-on provider choice risks-to continuity-of care Disrupting established supparrangements can:undo years of progressdestabilise therapeutic relationshipsincrease stess-for families Choice-and-control ar fundamental principles of-the NDIsand should be protected.
Clarity-an consultation There is widespread concern in-th communty abou lack-clarity around how these changs willbe implemented and what they-will mean-in practice.Many participants-families do not feelthe reforms-have-been clearly explained-or adequately co-designed-with those-most affected.Given th complexity-scale ofthese-changes,meaningful consulaton with-participants-is essential. What-thesechanges would-mean for me-and my family If the-proposed changes result-i reduced access to-supports,the likely consequences woul include:-decline-my functional-capacity& increased progression-MS-loss independence & increased reliance-higher-cost services-regression-child’s development& increased future support needsreducd participation-education,&cmmunity-&social environmentsinerease mental health impacts-family stress Page 3 o f4
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2040
These outcomes would not only affect our wellbeing but would likely increase long-term costs to the system.
Recommendations
I respectfully ask the Committee to consider:
- Maintaining access to preventative and capacity-building supports Recognise that these supports reduce long-term costs and improve outcomes.
- Ensuring the definition of “permanence” reflects real-world conditions Avoid requiring participants to exhaust unavailable, unaffordable, or inappropriate treatments.
- Limiting reliance on functional assessments as sole evidence Ensure decision-making considers longitudinal impact and lived experience.
- Protecting supports for children with developmental conditions Recognise that autism is lifelong and requires ongoing, evolving support.
- Safeguarding self-management and participant choice and control Preserve flexibility and continuity of care.
- Ensuring genuine consultation with people with disability and families Reforms should be co-designed with those directly affected.