Submission 2166

Submission: Concerns Regarding Proposed Amendments to the NDIS Legislation Bill

To Whom It May Concern,

I am writing to express my deep concerns regarding the proposed changes to the National Disability Insurance Scheme (NDIS) legislation bill. As someone who is deeply invested in the wellbeing and rights of individuals who rely on the NDIS, I believe it is crucial to address the potential implications of these changes. It is my hope that this submission will contribute to ensuring that the NDIS remains a fair, effective, and person-centred system that upholds the dignity and needs of all participants. effective, and person-centred approach.

1. The Ethical and Practical Limitations of the I-CAN Assessment

The I-CAN assessment, while originally designed for use by trained and certified assessors, is proposed to be administered by non-allied health professionals. This practice is not only ethically questionable but also fundamentally flawed in its ability to provide a comprehensive understanding of a person’s diagnosis and how it impacts their daily life.

The I-CAN relies heavily on self-reporting across 12 life domains, which is inherently limited as a standalone method of assessment. Self-reporting used alone is often inaccurate, particularly for individuals who lack insight into their own medical conditions or functional limitations. Many individuals may unintentionally underreport their challenges due to pride, lack of awareness, or an inability to articulate their struggles. This is especially true for individuals with cognitive impairments, mental health conditions, or other disabilities that affect self-awareness. On the other hand, self-reporting also welcomes liars—those who may intentionally misrepresent their circumstances to manipulate the outcome of the assessment. This further undermines the reliability of using the I- CAN as a fair and accurate stand-alone assessment for determining support needs.

Additionally, using the same assessment for reviews may help ensure consistency by evaluating participants against the same criteria over time, reducing the risk of discrepancies caused by varying methodologies or subjective interpretations. However, this approach also carries the risk of failing to highlight gaps or changes in a participant’s needs that were previously overlooked. Without a more dynamic and flexible assessment process, critical areas of support may remain unaddressed, preventing participants from achieving optimal outcomes. To mitigate this, it is essential to involve trained health professionals who can provide the necessary context, observation, and expertise to adapt the assessment process and ensure it fully captures the evolving needs of each individual.

As an OT, I am trained to assess individuals holistically, taking into account their diagnosis, prognosis, self-reported experiences, and—critically—direct observation of their functional abilities. Observations allow allied health professionals to identify discrepancies between what an individual reports and what they can actually do. For example:

• A person may report that they can mobilise around the home independent or transfer from a chair. However, observation might reveal that they rely on furniture for stability, use unsafe techniques, or require assistance from a mobility aid they are reluctant to use due to pride or lack of insight.

• While self-reporting might suggest that a person can shower independently, direct observation could reveal significant unmet needs—such as reliance on a shower chair, the necessity of setup assistance, or major adaptations like shaving their head due to an inability to wash their hair, or even showering outside of the shower over the floor waste drain to manage their limitations.

Submission 2166

These nuances cannot be captured through self-reporting alone. Furthermore, allied health professionals bring a deep understanding of medical conditions and their varied presentations, which allows us to ask targeted questions and identify issues that may not be immediately apparent. For example, we understand how different environments can exacerbate symptoms—such as how a person’s mobility or behaviour may differ in the safety of their home compared to a public space like a shopping centre.

Using the I-CAN assessment as the sole tool to determine eligibility for NDS support is not only inadequate but also ethically indefensible. It risks denying vulnerable individuals the support they need based on incomplete or inaccurate information.

Rigid Budgeting Structures and the Need for Flexibility

The proposed structure of NDIs budgets is inflexible and fails to account for the dynamic and individualised nature of participant needs. As a specialised OT working in home modifications (HM), I have witnessed firsthand how rigid budget categories can hinder participants’ ability to access the most appropriate and cost-effective supports. For example:

• Home Modifications vs Assistive Technology (AT): In some cases, a one-off investment in home modifications can eliminate or significantly reduce the need for ongoing AT costs. Conversely, in other cases, prioritising AT may reduce the need for costly home modifications. The current structure does not allow for this kind of flexibility, forcing participants to fit their needs into predefined categories rather than tailoring budgets to their unique circumstances.

• Short-Term Respite: In the context of home modifications, short-term respite may be necessary to allow for construction work to be completed safely. However, in other cases, it may not be required. Budgeting should reflect these individual variations rather than imposing a one-size-fits-all approach.

• Behaviour Support and Plan Management: These funds also need to ebb, and flow based on the participant’s changing needs. A rigid allocation system fails to accommodate this reality.

A flexible budgeting model is essential to ensure that participants can access the supports they need when they need them, without being constrained by arbitrary categories.

Barriers to Accessing “Appropriate” Treatment

The current system’s definition of “appropriate” treatment is deeply flawed. The proposed amendment states that treatment is still considered “appropriate” even if the participant cannot realistically access it due to financial constraints or geographic location.

This approach is both unethical and discriminatory, disproportionately marginalising individuals from lower socio-economic backgrounds and those living in rural or remote areas.

As someone who works with this population, I see the devastating consequences of these barriers every day. Many individuals who require NDIS support cannot afford treatment, do not have access to NDIs funding, and are forced to live lives of unnecessary suffering. They are unable to return to work, rely on social housing and disability pensions, and struggle to survive. This systemic inequity is unacceptable, perpetuates cycles of disadvantage and will further catapult individuals into this category.

Submission 2166

If treatment is deemed “appropriate,” funding, accommodation, and support must be provided to ensure that participants can access it. Anything less is unjust and reflects a lack of understanding of the lived realities of those who rely on the NDS.

Tightening “Reasonable and Necessary” Criteria

The push to tighten the “reasonable and necessary“ criteria by prioritising comparable supports at a lower cost fails to consider the functional outcomes for participants. For example:

• A shower stool without armrests or a back may be a lower-cost alternative to a shower chair with armrests and a back. However, for individuals who require additional support, the stool may be unsafe or unusable, necessitating the installation of grab rails—a far more expensive solution in the long term.

Cost-cutting measures that prioritise short-term savings over long-term outcomes are counterproductive and risk compromising participant safety and quality of life.

This proposal needs to include comparable supports with the SAME OUTCOME.

Maximum Funding, Intensity, and Staffing Ratios

A one-size-fits-all approach to budgeting for a specific diagnosis is harmful and ignores the diverse needs of individuals. Medical conditions vary greatly between people, and the level of support required depends on individual circumstances. For instance, one person with cerebral palsy may need 24/7 intensive care, while another may only require occasional mobility assistance. Blanket funding caps or rigid staffing ratios based on diagnosis risk leaving individuals without adequate support. The NDIS must base funding, support intensity, and staffing ratios on personalised assessments to ensure resources are allocated fairly and effectively. Additionally, symptoms may vary year to year in a non-linear manner- this is also not considered.

Ministerial Powers and Bias in Budgeting and Capping

The increasing involvement of ministerial powers in NDS budgeting and capping decisions raises significant concerns about bias and inequity. Decisions about what is deemed “reasonable and necessary” are often influenced by political and financial considerations rather than the actual needs of participants. This creates a system where funding allocations are not based on evidence or individual circumstances but are instead shaped by overarching budgetary constraints and ministerial priorities.

This approach disproportionately impacts vulnerable populations, particularly those from lower socio- economic backgrounds or rural and remote areas, who are already at a disadvantage when accessing services. It also undermines the integrity of the NDIS by prioritising cost containment over participant outcomes.

To address this issue, a third-party authority organisation with a robust and transparent design must be used instead to oversee budgeting and capping decisions. This organisation should operate independently of political influence and be guided by evidence-based practices, participant needs, and ethical principles. Such a framework would ensure that decisions are fair, equitable, and focused on achieving the best possible outcomes for participants.

Amendment to Expectations of Informal Supports

The expectation that parents should provide substantial care and support for children with additional needs, particularly when funding is cut, is unrealistic and dangerous. Parents of children with complex additional needs already face significant challenges in providing adequate care. Expecting

Submission 2166

them to be the sole providers of these supports without adequate external assistance can lead to devastating consequences.

A tragic example of this is the Mosman Park murder-suicide, where a family took extreme actions after being unable to cope with the demands of supporting their children with Autsim Spectrum Disorder following the reduction of vital support funding. This heartbreaking case highlights the critical need for additional support for families of children with disabilities.

Cutting funding for these families not only jeopardises the wellbeing of the children and but also places additional burnout, stressors and financial strain on parents. Many families may be forced to rely more heavily on government subsidies and payments, as one or both parents may need to give up work to provide full-time care. This is not a sustainable or ethical solution.

Children with additional needs require additional support, which a typical nuclear family structure is simply unable to provide on its own. The NDIS must recognise this reality and ensure that funding decisions reflect the genuine needs of these families, rather than imposing unrealistic expectations that risk further harm.

Effective and Beneficial Supports

The current reliance on high-level published research as the primary measure of “effective and beneficial” support is fundamentally flawed. While research evidence is important, it should not be prioritised over qualitative data—the lived experiences of individuals with disabilities and their families. This imbalance must be changed. Quantitative research often fails to capture the complexity and individuality of living with a disability, overlooking the nuanced realities that shape a person’s needs.

Lived experience provides critical insights into the practical application and real-world effectiveness of supports, highlighting service gaps and barriers to access. Ignoring this data in favour of rigid, research-driven criteria risks creating a system disconnected from those it is meant to serve.

The NDIS must adopt a balanced approach that values high-level research evidence and qualitative data equally. This will ensure supports are not only evidence-based but also person-centred, practical, and genuinely beneficial to participants.

Addressing Systemic Issues and Waste

While there is a need to address inefficiencies in NDIS budgeting, the current approach unfairly argets participants rather than addressing systemic issues. Other key areas for review should include:

• Unused Funds: Participants are often forced to spend allocated funds unnecessarily to avoid losing them in future funding reviews. This is a flaw in the system, not fraud by participants.

• Support Provider Reviews: Shonky support coordinators and NDIS-approved businesses that charge exorbitant rates must be investigated and held accountable. Permanent exclusion should be implemented. These practices exploit the system and divert funds away from participants who need them most.

Submission 2166

Conclusion

The proposed changes to the NDIS fail to adopt a person-centred approach, undermining the lived experiences of individuals with disabilities. By reverting to a mechanistic, one-size-fits-all model that focuses solely on medical conditions, these changes ignore consumer voices, fail to promote inclusivity, and risk further socially marginalising and isolating participants. Instead of making structural changes based on detached decision-making, policymakers should listen to the consumers—that those who use the scheme and have firsthand experience of its flaws—before deciding what is best for them.

Yours Sincerely