NDIA Accountability Project

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Treatments must be available in practice, not just in theory (Participant experience)

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Submission to the Senate Community Affairs Legislation Committee

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

Date: 24th May 2026

Introduction

Thank you for the opportunity to make submission on inquiry into National Disability Insurance Scheme Amendment, Securing the NDIS future generations*,* Bill 2026. This submission comes from perspective someone with lived experience as an NDIS participant who routinely volunteers work advocate. Agree must sustainable fraud poor-quality supports ineffective spending exploitation should addressed However deeply concern parts this bill unintentionally increase long-term costs while worsening participant distress reducing trust delaying support increasing crisis presentations making scheme less collaborative Submission alternative path achieve sustainability one could drastically reduce costs but quality life participants will speak today However first begin concerns present bill

Treatments available practice theory under this bill person found ineligible schemes particular supports basis treatment service mainstream considered theoretically accessible even genuinely able accessed practical constraints existence does not guarantee equitable access cost location transport barriers disability-related limitations health risks availability other practical constraints also concerned that participants feel pressured undergo treatments may clinically appropriate them order access supports Page of \

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

Submission 1652

Some treatments may carry significant risks, side effects, or contraindications for particular individuals. Participants should retain the right to make appropriate, informed medical decisions in consultation with their treating professionals without fear that declining a treatment may prevent access to disability supports.

Functional Capacity Cannot Be Understood Without Context

Accurately assessing the extent and impact of a person’s disability requires careful consideration of the broader context of their life and circumstances. Assessments should take into account:

  • barriers to accessing treatment, services, or supports
  • access to transport and other essential resources
  • financial circumstances and affordability
  • housing stability and living environment
  • fluctuating capacity, episodic conditions, and periods of deterioration
  • mitigating or compensatory strategies, including any physical, psychological, and social costs associated with relying on those strategies
  • the extent, reliability, and sustainability of informal supports
  • any ways in which reliance on informal supports may compromise a participant’s dignity, autonomy, relationships, wellbeing, independence, privacy, or safety
  • any ways in which reliance on informal supports may contribute to carer burnout, financial stress, reduced workforce participation, or declining physical or mental wellbeing among carers and family members
  • genuine informal support capacity, not theoretical informal support capacity Assessments that do not consider the broader context of a participant’s circumstances risk:WellbeingDignitySafetyNeglectBreakdown of informal supportsIsolation

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

Submission 1652

  • Housing instability
  • Injury
  • Domestic Violence

Informal caring roles are often intensive, exhausting, and difficult to sustain over time. Where formal supports are insufficient, disabled people may rely on informal supports to an unsustainable extent, putting themselves and their networks at risk. It is important that these factors are taken into account.

Invisible Physical Disability and Fluctuating Functioning Must Be Properly Recognised

I hold concerns about the impact of changes to functional capacity measures on people with invisible or dynamic disabilities. Many people with these conditions may appear to have increased function at times because they carefully pace activities using recovery periods between tasks. A participant can cook a meal attend appointments clean shop leave house However relevant question whether perform task assessor safely repeatedly sustainable without causing deterioration loss other areas life Without accounting cumulative impacts assessments risk overstating functionality underestimating support needs Assessments not taking context measuring short-term performance rather than sustained functioning This particularly concern where participants might outperform assessment settings followed subsequent decline Such performance does reflect stable enduring capability ## Limiting Unscheduled Plan Reassessments Risks Delayed Outcomes Preventable Incidents The Bill proposes limit unscheduled plan reassessment requiring participants show significant ongoing change in support linked accepted impairments Concern this as circumstances frequently changing ways meet threshold For example: Page 3 of 10

  • A 10% increase needed
  • Due to deterioration: • Neurological condition, or • Informal care during chemotherapy (3 months) The proposed change might limit fund use efficiency. If plan changes are limited… Participants continue ineffective services instead of effective ones.

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

Submission 1652 Ownership may sometimes be cheaper long-term, more stable, simpler, more appropriate, less administratively burdensome, and better for participant independence. If participants need to provide substantial evidence as to why buying is better than leasing, that evidence itself costs money. It may require OT assessments, quotes, reports, comparison documents, and administrative processing. In some cases, the cost of providing substantial evidence that purchase is better value can exceed the savings the policy is trying to create. I strongly hold however that leasing should be considered an option for participants where rapid deterioration or change may be present.

Evidence-Based Practice Should Not Override Individual Outcomes The Bill appears to place stronger emphasis on research evidence and the CEO’s abilityto decide whether a support is effective and beneficial.I support evidence-informed decision-making.However,

disability supports are often highly individual.A support may be very effectivewhile there being limited large-scale research evidence.A support mayalso ineffective even if it broadly evidenced condition.Funding therapies or supports because they’re based cohort lead wasted expenditure.Valueformoney best achieved when what works funded through measurable outcomesand lived experience or research evidence.

Factors When Considering Sustainable Path Moving Forward A) The Bill Risks Punishing Functional Gains Stricter access reassessment functional capacity provisions unintentionallypunish gains.NDIS seeks build participation stability quality life.Bill passes many fear improve lose support.This could perverse incentive participant extremely hard increase independence community reduce therapy needs fall below threshold ongoing need.Another important factor person appear improved working those reduced removed deteriorate again.

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

Submission 1652

The system’s approach to sustainability:

The system may then spend the same money over and over rebuilding outcomes that would have been more cost-effective if simply maintained. The observation is made: supports are sometimes cut at their most functional point, often resulting in loss of gains achieved from those interventions. A sustainable scheme should avoid repeatedly funding collapse-and-rebuild cycles; it must maintain stability because maintaining it might also prove cheaper than otherwise. Participants shouldn’t fear losing out on what was intended when they joined - equal participation either within workforces or communities; these benefits could evaporate without ongoing support services.

  • gradual supported participation,
  • standby assistance, -and eventual independence where appropriate.

However, there can also be an assumption within disability systems that if a participant cannot complete a task independently, the issue is necessarily a lack of skill requiring further capacity building. This is not always the case.

For many people with intellectual or developmental disability, barriers may also involve:

  • cognitive overload,
  • difficulty sequencing multiple steps,
  • impaired working memory,
  • difficulty initiating tasks,
  • difficulty adapting when things change,
  • difficulty with transitions between tasks *or inability to sustain the mental effort required to complete tasks consistently and safely. In these situations, the issue may not simply be that the participant does not know how to complete the task. The issue may also involve the ongoing cognitive demands required to reliably carry out this task in day-to-day settings. Therapists might make suitable suggestions; however, those proposals are often poorly implemented due to insufficient training for support workers regarding specific disabilities’ impacts on functioning abilities. The scheme could then repeatedly fund items such as:
  • therapy,
  • reports,
  • recommendations,
  • support work,
  • reassessments, and further interventions.

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

Submission 1652

without achieving sustained meaningful change for the participant.

Few reforms would likely represent greater value for money than investing in practical, disability-specific support worker training and workforce capability, so that they can help to implement therapist recommendations.

D) A Worker’s Administrative Capacity is Not The Same As Their Support Capability

I understand why some may prefer registered providers. Safeguards and accountability matter. However, many people with disability appreciate independent support workers for good reasons. Independent workers who can maintain a stable income often do so because they are highly valued young participants They often are highly trained experienced at capacity building It important to note sometimes works best on ground not same as paperwork And sometimes big providers good at paperwork have care plans but don’t follow them instead providing low quality ineffective supports If reforms create excessive administrative burden scheme lose many excellent workers effective improving independence but resourced financially or administratively manage complex compliance systems Workers ability navigate paperwork different from their ability improve participan’s capacity life For example I work wth support worker highlly trained She has changed my life One day hope be independen community access Also sole trader dyslexia Don’t want risk having stop progress registration fees exceed what sole trader could do complex adminstrative paperwork

E Innovation Assistive Technology Are Major Untapped Sustainability Opportunities

Ask Committee consider how much some plans reduce if the scheme invested in innovation assistive technology automation robotics Many participants particularly those hgh supprt needs dont want peopel around them all time Constant human support intrusive exhausting socially draining Some participants would strongly prefere more privacy indepence Scheme invest techonology robots adaptive equipment environmental controls AI-assisted supports automated cooking cleaning technologies

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

Submission 1652

  • This would not just be value for money; it also increases dignity, privacy, autonomy —and quality-of-life.
  • Even expensive technology may still seem worth its weight when compared with years–or decades- of human support.- A sustainable NDIS shouldn’t ask how to reduce supports alone but rather how-to-reduce reliance-on-support-through-innovation-and-autonomy.- Innovation competitions could encourage practical technologies, systems & solutions that cut long-term scheme costs while maintaining high-quality participant support.F) Standardised Foundational Programs Could Save Money Without Removing Individual Support There are more effective ways to deliver some therapy-related supports. Many participants who share similar disabilities repeatedly require foundational education around common matters encountered in their group groups at present, funding individual clinicians to explain these concepts again and again is wasteful - For certain individuals standardised resources can help include accessible databases, evidence-based programs modules videos guided tools plain language resources disability-specific skill-building programmes These should complement individual therapies a hybrid model works well: standardized foundation supplemented by tailored hours specific barriers adaptations implementation reducing repetitive expenditure preserving personalisation`Conclusion: The Committee must consider whether the draft risks increasing longterm costs de-incentivising progress incidents amplifying waste deterioration through delayed assessment changes I believe there’s better approach A sustainable NDIS built on collaboration responsiveness innovation workforce skills meaningful outcomes Participants shouldn’t fear losing needed supports if they improve or need less. They don’t have prove cost-effectiveness of lower-cost supports.

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

Submission 1652

  • Supports should not be cut at the point they are working.
  • Capacity building should not be pushed where it is unrealistically harmful or wastefully done.
  • I strongly believe that the NDIS could achieve savings equivalent to those currently being made while avoiding negative consequences, if changes were implemented through collaboration between government officials and people living within communities affected directly by disability issues. -I am grateful towards all members involved who took their valuable time considering this matter thoroughly; also acknowledging your willingness to allow me present my views on such an important topic.