Submission 308
Submission to the Senate Community Affairs Legislation
Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations)
Bill 2026
Save Our Sons Duchenne Foundation
29 May 2026
Executive summary Save Our Sons Duchenne Foundation welcomes the opportunity to contribute to the inquiry. We support a fair, sustainable and well-governed NDIS. Scheme integrity matters. However, reform must not unintentionally narrow access, delay urgent supports, or reduce essential assistance for people with rare, progressive and complex disability. This submission represents people living with dystrophinopathies, including Duchenne muscular dystrophy, Becker muscular dystrophy, X-linked dilated cardiomyopathy, manifesting carriers and informal carers. Our central concern is that the Bill and any related rules must recognise that, for progressive neuromuscular conditions, many supports do not improve function in a simple linear way. They maintain function, slow decline, prevent harm, preserve independence, enable participation and reduce avoidable pressure on families, hospitals and crisis systems. The submission draws on community feedback, lived-experience themes and de-identified examples provided to SOSDF. These examples are not individual complaints and are included only to illustrate recurring issues relevant to the Bill.
Key recommendations Explicitly recognise progressive, degenerative and fluctuating disability in access, planning and support-needs assessment rules. Ensure reasonable and necessary supports include maintenance of function, prevention of deterioration, safety, participation, dignity and quality of life, not only measurable functional improvement. Create timely reassessment pathways for sudden or predictable functional decline, including loss of ambulation, upper-limb function, respiratory change, cardiac deterioration or urgent assistive technology needs. Embed shared decision-making with the participant, nominee or family where appropriate, and relevant multidisciplinary clinicians. Require access to neuromuscular or rare disease expertise where generalist assessment may underestimate risk, fatigue, fluctuation or emerging decline. Reduce duplicated evidence, repeated applications and unnecessary reassessments for lifelong, progressive and well-characterised conditions. Strengthen fraud, pricing and value-for-money controls without shifting further administrative burden onto participants and unpaid carers. Ensure automation, non-response and suspension processes include human oversight, accessible communication and safeguards for people with severe physical impairment or hospitalisation. Preserve social, civic and community participation supports where they are essential to inclusion, education, employment, volunteering, mental health and independent living.
About Save Our Sons Duchenne Foundation
Save Our Sons Duchenne Foundation is an Australian not-for-profit organisation supporting people and families affected by Duchenne and Becker muscular dystrophy and related dystrophinopathies. Our work includes community support, advocacy, education, clinical-trial awareness, practical resources and collaboration with families, clinicians, researchers and sector partners. We make this submission because our community depends on the NDIS for supports that enable safety, mobility, independence, communication, participation and dignity across childhood, adolescence and adulthood.
Schedule 1: Access and planning measures
Access, functional capacity and unscheduled reassessments A more consistent and evidence-based access process is appropriate. However, functional-capacity assessment must be adapted for rare, progressive and highly variable conditions. In dystrophinopathies, decline may be anticipated, but timing and practical impact are not always predictable. A child may move quickly from walking to needing safe transfers, suitable seating, toileting adaptations, mobility support, home adjustments and specialist equipment.
Submission 308
Assessment should not be reduced to a single performance snapshot. It should consider disease trajectory, fatigue, treatment side effects, respiratory and cardiac risk, environmental barriers, family capacity and the participant’s goals. Specialist neuromuscular understanding is essential where generalist assessment may underestimate fatigue, fluctuation, treatment effects or emerging decline. Tighter criteria for unscheduled reassessment must not delay urgent support when decline is sudden, predictable or clinically significant. Delays in seating, wheelchairs, repairs, transfers, home modifications or vehicle modifications can affect safety, pain, participation and independence.
Link between impairment and support need We support clearer links between impairment and support need, but caution against rules that create unnecessary barriers where a person has more than one disability, an additional health event, or complex interaction between disease progression and environment. A functional approach should make timely support easier, not require participants to re-prove disability through repeated applications, appeals or narrow causal tests. Participants report inconsistent decisions even where functional deficits are similar. Some are assessed differently, some remain in inappropriate categories, and many must fund lengthy functional-capacity assessments from already limited plans. Evidence requirements should be proportionate, consistent and sensitive to lifelong, well-characterised progressive conditions.
Support determinations, plan renewal and reasonable and necessary supports Support determinations should not disadvantage people with severe physical disability or progressive conditions because their needs do not fit broad administrative categories. Social, civic and community participation supports are not optional for many participants; they enable inclusion, education, volunteering, work, confidence, mental health and independent living. For some adults with Duchenne or Becker, community participation and capacity-building supports are not discretionary extras; they are practical pathways to education, volunteering, employment, confidence, independence and visible inclusion in civic life. Plan renewal should include adequate notice, clear explanation of rights, reasonable time to gather evidence and the ability to reschedule. Families report concern about plans rolling over without proper reassessment, or informal conversations leading to material changes without the participant understanding the implications. The reasonable and necessary process has not always inspired confidence. Supports reported as delayed, reduced or inconsistently approved include physiotherapy, therapy hours, wheelchairs, night ankle-foot orthoses, vehicle modifications, wheelchair repairs, independent living supports and assistive technology such as alternative controls. In progressive disability, delay can mean loss of autonomy, pain, injury, hospitalisation or avoidable crisis.
Plan suspensions and permanence Any power to suspend or revoke plan access because of non-response must include strong safeguards. Some people with advanced Duchenne have negligible hand or finger movement and may not answer calls, open emails or respond to automated communications quickly. Others may be in hospital or critical care, with family providing essential support. Non-response should trigger accessible human follow-up, not automatic exclusion. We also caution against any approach to permanence that assumes new or emerging treatments remove disability impact. In rare diseases, clinical-trial language, media reporting and market expectation can overstate functional change. Access decisions should rely on clear evidence of the individual’s current and likely functional needs, not general assumptions about treatment availability.
Schedule 2: Fraud measures SOSDF welcomes measures to reduce waste, fraud and criminal activity. Scheme integrity matters to participants, families, taxpayers and ethical providers. However, fraud control must not translate into further scrutiny of participants who are already managing complex disability, extensive evidence requirements and unpaid administrative work. Many families expected the NDIS to operate as an insurance-based model that enabled timely, person-centred support. Too often, participants experience it as an over-administered system requiring repeated requests, evidence, reviews and appeals. Reform should reduce unnecessary administration while targeting poor conduct, inflated pricing and misuse of funds.
Schedule 3: Governance arrangements
Pricing and value for money Pricing reform is essential. Participants report that disability-related equipment and services can be priced well above comparable markets, with NDIS status sometimes raised by suppliers before quoting. Stronger transparency, benchmarking and value-for-money controls are needed.
Submission 308
Price control should target market distortion and poor conduct rather than ration necessary equipment or create unaffordable gaps for participants. Involving people with disability in pricing and policy design would strengthen practical oversight and improve trust.
Automation of administrative action Technology may improve administrative efficiency, but disability support decisions involve complex human circumstances. Automation must not replace careful human judgement where decisions affect safety, access, income, independence or essential care. Any automated process should include accessible communication, clear reasons, review rights and human follow-up before adverse action is taken.
Schedule 4: New framework planning The proposed new framework planning arrangements raise significant concerns for rare and progressive disease communities. No single assessor, however well trained, can be expected to understand the practical implications of thousands of rare conditions without specialist input. Assessment should use shared decision-making with the participant, nominee or family where appropriate, and relevant multidisciplinary clinicians. We are concerned that funding caps, narrower causal-connection rules and preconditions for funding may reduce flexibility. Supports clearly linked to disability may still be shaped by environment, wellbeing, family capacity, safety, participation and life stage. Rules should preserve flexibility for complex and progressive disability, particularly where support prevents deterioration or higher-cost intervention.
Schedule 5: Transitional rules We note the transitional rules and the intention to manage implementation issues during the first 12 months. Transitional powers must be applied carefully and transparently, with safeguards for people with complex disability who may be disproportionately affected by implementation errors, unclear communication or inconsistent interpretation.
Conclusion
Save Our Sons Duchenne Foundation supports a sustainable NDIS that is clear, fair and protected from fraud and waste. Sustainability must not be achieved by narrowing access, delaying urgent reassessment, reducing essential participation supports, or shifting further administrative burden onto people with disability and unpaid carers. For people living with dystrophinopathies, the NDIS must recognise progression, fluctuation, risk, maintenance of function, participation, dignity and quality of life. We urge the Committee to recommend safeguards that ensure reform strengthens the Scheme without unintentionally disadvantaging people with rare, progressive and complex disability.
References and resources Australian Parliament House, Senate Community Affairs Legislation Committee inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. Australian Parliament House, Making a submission: guidance for Senate committee inquiries. Australian Government Department of Health, Disability and Ageing, NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 resources. Rare Voices Australia, response to NDIS reform and rare disease disability. Every Australian Counts, explainer on proposed NDIS changes. Lee, Choi and Kim, Burden of Duchenne muscular dystrophy in Australia: a scoping review, BMJ Neurology Open, 2025. Clarke, J., Supporting Mental Health in Carers of People Living with Duchenne Muscular Dystrophy, with in-kind support from Save Our Sons Duchenne Foundation.