National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2428
Submission to the Community Affairs Legislation Committee Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by: Muscular Dystrophy Foundation Australia (MDFA) Contact: Di Carter, Executive Director Email: Phone: Date: 10 July 2026
Introduction Muscular Dystrophy Foundation Australia (MDFA) represents Australians living with muscular dystrophy and other rare, progressive neuromuscular conditions. Together, these encompass more than 100 rare and ultra-rare conditions which feature progressive loss of muscle function over a lifetime, and increasingly complex health and support needs. Although there is no comprehensive dataset that captures the full prevalence of these conditions, available evidence indicates this community is likely to be as high as 41,000 people. MDFA’s member organisations provide specialist support, advocacy and community connection while working to strengthen knowledge and understanding about these conditions, to ensure future disability, health and mainstream services are appropriately planned and funded.
The proposed NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 has generated significant distress within our community. Members have described feeling anxious, fearful, blind-sided, and stressed about the implications of the bill. The NDIS reset is widely perceived as a shift that will reduce access, increase administrative burden, and create harmful gaps in essential supports.
For people with neuromuscular conditions, the NDIS is not discretionary—it is fundamental, providing critical supports that enable people to live ordinary lives. Any legislative changes must uphold the intent of the NDIS and enable people to participate in their communities, maintain independence, exercise choice and control, and work towards their personal goals.
MDFA identifies four major areas where the proposed reforms risk directly and negatively affecting people with neuromuscular conditions:
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Changing eligibility
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Addressing fraud
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Updating governance
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Ensuring scheme sustainability
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Clarifying Eligibility 1.1 Requirement to Exhaust All Treatments The proposal to implement new eligibility criteria by January 2028 raises immediate concerns regarding transparency, consultation, and clinical appropriateness. MDFA seeks clarity on how people with lived
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2428
experience will be included in the development of these criteria, and how specialist expertise in degenerative conditions will be embedded from the outset.
The requirement for individuals to attempt “all possible treatments” before applying for the NDIS is inappropriate and unworkable for people with neuromuscular conditions. These conditions are lifelong, progressive and currently without curative treatment. Many interventions are supportive rather than restorative, and some may be clinically unsuitable, geographically inaccessible, financially prohibitive or dependent on specialist availability.
This requirement appears to function primarily as a cost-containment mechanism, forcing people into lengthy, expensive, and emotionally taxing processes that delay access to essential supports. For individuals with progressive neuromuscular conditions, delays result in worsening health outcomes, increased medical episodes, greater reliance on informal supports, heightened family stress, and increased pressure on Publicly funded supports over time.
1.2 Functional Capacity Assessments MDFA acknowledges the potential value of a universal functional assessment tool such as ICAN, but its effectiveness depends on careful design and implementation. For people with neuromuscular conditions, the tool must explicitly recognise: Progressive and degenerative trajectories Episodic fluctuations in function The impact of rarity and geographic disadvantage Socioeconomic barriers to accessing therapy and medical care.
Assessments must be conducted exclusively by qualified allied health professionals, as originally intended. The consequences of functional assessments are profound, determining access to supports that directly affect safety, independence, and wellbeing.
Automated decision-making must not be applied to functional assessments. Algorithms cannot adequately account for complexity, nuance, or the cumulative nature of degenerative conditions. Human expertise is essential to ensure fairness and accuracy.
1.3 Unscheduled Reassessments The proposed tightening of criteria for unscheduled reassessments is deeply concerning. People with neuromuscular conditions frequently experience unpredictable changes in their disability related support needs. Their challenges are cumulative, interconnected, and often exacerbated by delays in accessing supports.
The experience of Joshua Ruff, a 33-year-old Victorian with Duchenne muscular dystrophy, illustrates the risks. Following a cardiac arrest, an unplanned reassessment resulted in his plan being shifted away from self-management. His long-standing family-based support arrangements were replaced with agency staff, causing him to lose access to his trusted and trained support staff. As Joshua stated, “I have been left to navigate a system I did not choose, was not prepared for and is actively failing me.”
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2428
A flexible, responsive reassessment process is essential to prevent avoidable loss of function, increased safety risks, greater reliance on informal supports, carer burnout and unnecessary hospitalisation.
- Addressing Fraud MDFA supports efforts to reduce fraud, strengthen provider regulation, and improve payment processing. These measures are important for maintaining public trust and ensuring integrity.
However, media reporting often exaggerates the prevalence of fraud. Evidence suggests fraudulent behaviour represents a very small proportion of total NDIS expenditure. While rorts must be addressed, reforms must be carefully designed to avoid restricting access to legitimate therapeutic supports, particularly for people with complex and progressive disabilities.
Addressing fraud within the NDIS must not come at the expense of the community-based organisations that have been the cornerstone of trusted, accountable support for decades. Quality-assured, not-for- profit providers play a critical role in safeguarding participants through strong governance, transparency and deep community connections. These organisations are often founded and led by people with disability, family members and advocates with lived experience, giving them a unique understanding of the needs, risks and aspirations of the communities they serve. Unlike commercial operators, any surplus generated is reinvested directly into services, workforce capability, innovation and community outcomes.
Not-for-profit providers leverage philanthropy, fundraising and volunteer contributions to deliver value beyond government investment, often generating significantly greater social impact for every public dollar spent. Our focus is not on profit, but on building the knowledge, expertise and trusted relationships required to meet the complex and evolving needs of people with disability. As governments consider reforms and restructuring of the disability support system, the contribution of community- based organisations like MDFA and our members, should be formally recognised, protected and prioritised through genuine partnership in policy development, service design and implementation.
Community-based, not-for-profit providers are not simply service delivery agents; they are essential community infrastructure and should be recognised as priority partners in building a more accountable, sustainable and participant-centred disability support system. Further detail is required to understand the practical implications of the proposed reforms and how they will be implemented without creating unintended barriers.
- Updating Governance 3.1 Technical Advisory Group MDFA supports the establishment of a Technical Advisory Group and emphasises the need for specialist expertise in progressive neuromuscular conditions to be embedded from the outset. Perhaps along the lines of the model implemented for Motor Neurone Disease.
The Advisory Group must enhance holistic supports, not fragment them. People with NMCs require coordinated, multidisciplinary care and governance structures must reflect this.
3.2 Automated Decision Making The introduction of automated decision-making processes raises significant concerns regarding transparency, fairness, and the potential for algorithmic disadvantage. Safeguards must include: Page 3 of 5 Muscular Dystrophy Foundation Australia Locked Bag 3020, Springwood Qld 4127 info@mdaustralia.org.au ABN 55 104 074 455
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2428
Clear public reporting mechanisms Independent oversight Human review, preferably by people with formal qualifications, of all decisions affecting access to supports Automation should support, not replace, skilled human staff. The goal must be to improve efficiency while preserving the ability of experienced and appropriately qualified planners to have the time needed to make intelligent, holistic and compassionate decisions.
3.3 Ministerial Powers MDFA welcomes proposed limits on ministerial powers, including the exclusion of daily living supports, transport, consumables, assistive technology and home modifications from ministerial direction. These protections are essential to maintain participant autonomy and scheme integrity.
3.4 Future System Design MDFA seeks detailed consultation timelines for the new plan management model (implementation October 2027) and the revised support coordination system (implementation July 2028). Co-design with people with neuromuscular conditions must be embedded throughout.
MDFA and its member organisations provide specialist system navigation supports and strongly advocate for specialist providers to remain available under the navigator model, as large generalist providers cannot meet the needs of people with rare, complex conditions.
- Ensuring the Scheme’s Sustainability for Current and Future Participants 4.1 Inclusive Communities Fund (ICF) The proposed $200 million Inclusive Communities Fund (ICF) appears intended to shift social and community participation supports outside individual NDIS plans. MDFA has significant concerns: The average removal of approximately $5,000 per participant is not evidence-based. The funding pool is insufficient relative to national demand. It is unclear whether the fund will operate within Tier 2/foundational supports or be administered by states and territories. Part returning to a block-funded approach, as we see this shift to an ICF, represents a major step backwards, fragmenting services and increasing competition between providers. Community-based programs delivered by specialist organisations should supplement, not replace, individualised NDIS funding.
The proposed reduction in average plan value (from $31,000 to $26,000) risks significant harm unless offset by equivalent or greater investment through the NDIS. Since late 2024, MDFA members have already observed and advocated against cuts to social and community participation supports, despite no legislative changes. These premature reductions create significant anxiety, uncertainty, and risk for participants already living complex and stressful lives.
4.2 Participant Numbers and Growth The bill proposes reducing NDIS participant numbers from 774,000 to 574,000. MDFA seeks urgent clarification on whether this reduction includes:
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2428
Ending NDIS support at age 65 years (or 50 years for Aboriginal and Torres Strait Islander people) Shifting children under eight to the Thriving Kids program Removing eligibility for people with autism level 2
These changes would place unsustainable pressure on state-funded disability support systems, which reduced or were closed down when the NDIS was being implemented. The rush to move people away from individualised funded cannot come before new community based, foundational support structures are in place. If people are moved to aged care, education and public health systems, these are often not equipped to deliver disability-specific supports. Increased parental responsibility for children with disability would further exacerbate carer burden.
The proposed reduction in annual NDIS growth from 11% to 5–6% is unrealistic and appears to be a broad cost-cutting strategy that does not reflect the actual number of Australians who require disability support.
4.3 Impact on Daily Life People with neuromuscular conditions rely on multi-system, individualised supports to maintain wellbeing, independence, safety, and social participation. As one participant stated, “The NDIS isn’t a luxury – it’s a lifeline.”
The current NDIS pricing structure does not adequately support best-practice care for people with neuromuscular conditions. Frozen pricing and industry comparisons used to justify reductions in price limits do not reflect:
The complexity of providing home-based supports The additional costs associated with rare conditions The need for non-billable time for research and professional development The importance of collaborative, non-competitive therapy models
Best-practice guidelines recommend therapy delivered in the participant’s environment, not centre-based settings. Pricing structures must reflect this reality to enable best outcomes for participants.
Conclusion MDFA values ongoing communication with the Department of Health, Disability & Ageing and the NDIA. Our member organisations play a critical role in supporting Australians with neuromuscular conditions through a whole-of-person approach that promotes safety, independence, and quality of life.
We urge the Committee to ensure that the NDIS Amendment Bill 2026 does not erode the fundamental principles of choice, control, dignity and equitable access. MDFA seeks a collaborative, co-designed approach that protects the wellbeing and social participation of people with neuromuscular conditions, both now and into the future.
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