Submission 3224 — Dr Helen Hawke — NDIS Future Generations Bill | External submission

EXECUTIVE SUMMARY

People living with complex and interacting disability often experience support needs that are poorly captured by narrow, task-based approaches to assessment and support planning. This submission argues that sustainable NDIS reform should be informed by real-world functioning, participation, safeguarding and effective stewardship of public resources.

I write this submission as a health professional, academic and long-term unpaid family carer supporting family members with complex disability. My perspective combines lived experience with expertise across the health and disability sectors, including an understanding of how health conditions translate into disability and support needs, and how health, disability and aged care systems interact at individual, service and policy levels.

These issues are not unique to my experience and have been identified through the Independent NDIS Review and by disability, allied health and carer organisations.

KEY CONCERNS

The proposed legislation may unintentionally:  encourage narrow interpretations of functional capacity that fail to recognise participation, supervision needs, prompting and fluctuating disability  increase reassessment, evidentiary burden and administrative costs without improving participant outcomes;  underestimate the contribution and sustainability of informal caregiving arrangements;  reduce transparency, accountability and confidence in support determinations; and  increase cost-shifting between disability, health and aged care systems.

RECOMMENDATIONS

Functional Capacity, Disability and Support Needs (Schedule 1 Parts 1, 3 and 6) Support needs should be assessed based on real-world functioning and participation. Adopt an approach informed by the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) that recognises participation, supervision requirements, prompting, environmental supports, cumulative disability and fluctuating functioning.
Evidence, Reassessment and Clinical Expertise (Schedule 1 Parts 2, 5 and 8) Resources should be directed towards participant supports rather than unnecessary reassessment and evidentiary duplication. Reduce unnecessary reassessment and evidentiary duplication for people with established disability. Establish nationally consistent evidence requirements and greater reliance on appropriately qualified medical and allied health professionals with expertise in functional assessment and disability.
Informal Care, Safeguarding and Sustainability (Schedule 1 Parts 3 and 6) Support planning should recognise the contribution, limits and sustainability of informal care, acknowledging that many support arrangements depend on substantial unpaid caregiving labour. Explicitly consider caregiver sustainability, supervision requirements and safeguarding risks when determining support needs. Support planning should not assume the indefinite availability of unpaid caregiving labour.
Transparency, Accountability and Resource Stewardship (Schedule 1 Part 4, Schedule 1 Part 9 and Schedule 4) Participants should be able to understand how funding decisions translate into actual supports. Improve transparency regarding support determinations, planning assumptions and decision-making processes, including what supports were requested, approved and funded and the rationale underpinning those decisions.

RECOMMENDATION 1. Functional Capacity, Disability & Support Needs (Schedule 1: Parts 1, 3 & 6) Key message: Functional capacity and support needs should be assessed using a contemporary biopsychosocial framework that recognises participation, supervision requirements, environmental supports, cumulative disability and fluctuating functioning. Policy principle: Disability support should be based on how people function and participate in everyday

life, not solely on diagnosis or isolated task performance.

Recommendations

Adopt an approach informed by the World Health Organization’s International Classification of Functioning, Disability and Health (ICF). Assess support needs based on real-world functioning and participation rather than isolated task performance. Recognise supervision, prompting, behavioural supports and environmental structure as legitimate disability supports where required to maintain safety, independence and participation.

RATIONALE

Narrow task-based interpretations of functional capacity risk underestimating disability and support needs for people living with complex and interacting disability. The World Health Organization’s International Classification of Functioning, Disability and Health (ICF) recognises that disability arises from the interaction between impairments, participation, environmental factors and available supports rather than diagnosis alone. The ability to perform a task does not necessarily mean a person can safely, consistently and sustainably function in everyday life. Many people with cognitive, neurological, behavioural and psychosocial disability may appear capable of undertaking individual activities while experiencing significant difficulties with judgement, executive functioning, memory, emotional regulation, risk awareness or self-management that limit participation and independence. Support needs frequently arise from the cumulative interaction of multiple impairments rather than from a single condition considered in isolation. Artificially separating physical, cognitive and psychosocial impairments risks overlooking how they combine to affect daily functioning, safety, community participation and overall support requirements. Supervision, prompting and behavioural supports are often the mechanisms that enable independence rather than replace it. These supports allow people to utilise existing skills, maintain routines, participate in community life and exercise choice and control. Without appropriate support, people may experience self neglect, medication mismanagement, social isolation, avoidable health deterioration or crisis presentations despite appearing capable of performing individual tasks. If functional capacity is interpreted too narrowly, there is a risk that disability and support needs will be systematically underestimated. This may result in inadequate support, increased reliance on unpaid carers, heightened safeguarding risks and greater costs to health, mental health and aged care systems over time. An ICF-informed approach would provide a more accurate and equitable basis for assessing functional capacity and support needs. It would better reflect the realities of people living with complex and interacting disability while supporting participation, autonomy, safety and inclusion.

RECOMMENDATION 2. Evidence, Reassessment & Clinical Expertise (Schedule 1 Parts 2, 5 and 8) Key message: Participants with established disability should not be required to repeatedly prove disability through duplicative assessments and reports. Greater reliance should be placed on appropriately qualified medical and allied health professionals, supported by clear and nationally consistent evidentiary requirements. Policy principle: Resources directed towards unnecessary reassessment and duplication are resources unavailable for direct supports, intervention, rehabilitation and participation.

Recommendations

 Reduce unnecessary reassessment and evidentiary duplication for participants with established, permanent or progressive disability.  Establish nationally consistent guidance regarding acceptable evidence.  Place greater reliance on evidence provided by appropriately qualified medical and allied health professionals with expertise in functional assessment and disability.  Focus review processes on changes in support needs and circumstances rather than repeatedly re establishing disability. \

RATIONALE

Repeated reassessment of established disability often consumes significant participant, clinical and NDIA resources without necessarily improving decision-making or participant outcomes. Participants, carers, clinicians and the NDIA may spend considerable time gathering, reviewing and reassessing information that is already well documented. Current evidentiary requirements lack clarity and consistency. Participants and clinicians frequently encounter changing forms, inconsistent requests for information and evolving evidentiary expectations. Additional reports may be requested despite existing documentation from treating specialists and allied health professionals with recognised expertise in functional assessment, creating duplication across participants, clinicians and the NDIA. These processes divert scarce clinical expertise away from direct care and contribute to broader workforce pressures. Time spent producing duplicative reports is time unavailable for assessment, treatment, rehabilitation and support. The cumulative impact extends beyond the NDIS, contributing to clinician burnout, workforce attrition and reduced capacity across health, disability and aged-care sectors. The existence of treatment or potential treatment should not be equated with the absence of disability. Many conditions can be treated, managed or stabilised while substantial functional impairment and support needs persist. Disability support decisions should therefore focus on functional impact and participation rather than assumptions that treatment alone removes disability-related needs. This issue is particularly relevant for psychosocial disability. Recovery-oriented practice focuses on maximising wellbeing and participation, but recovery should not be assumed to mean the resolution of disability or support needs. Many people experience periods of stability or improvement while continuing to require substantial disability supports to function safely and participate in everyday life. If evidentiary requirements remain unclear or duplicative, increasing amounts of public funding risk being directed towards administration rather than participant supports. This may increase costs, delay access to services, contribute to workforce shortages and place additional burden on participants and families. Over time, it may also reduce confidence that public resources are being used effectively to improve outcomes.

RECOMMENDATION 3. Informal Care, Safeguarding & Sustainability (Schedule 1 Parts 3 and 6) Key message: Support planning should explicitly consider caregiver sustainability, supervision requirements and safeguarding risks. Support determinations should not assume the indefinite availability of unpaid caregiving labour. Policy principle: The sustainability of informal care arrangements is fundamental to participant wellbeing, safeguarding and long-term NDIS sustainability.

Recommendations

 Explicitly consider caregiver sustainability when determining support needs.  Recognise supervision, prompting and safeguarding requirements as legitimate support needs.  Avoid assumptions that unpaid family members can provide indefinite or unlimited support.  Consider the impact of support decisions on both participant wellbeing and caregiver capacity.

RATIONALE

Informal care is a critical but often invisible component of Australia’s disability support system. Many participants rely on family members to provide supervision, prompting, behavioural support, care coordination, advocacy, crisis management and navigation of complex service systems. This contribution is rarely reflected in funding decisions despite being essential to safety, stability and participation. Support arrangements that appear sustainable on paper may depend on substantial unpaid caregiving labour. Families often absorb increasing responsibilities as disability progresses, support needs fluctuate or formal services prove insufficient. The apparent success of a support arrangement may therefore reflect the efforts of carers rather than the adequacy of funded supports. When informal care arrangements become unsustainable, risks are transferred to participants, carers and other service systems. Inadequate recognition of supervision and support needs may contribute to self neglect, safeguarding concerns, carer burnout, workforce withdrawal, avoidable hospital presentations and increased reliance on crisis services.

Recognising caregiver sustainability is both a safeguarding issue and a sustainability issue. Early recognition of caregiver strain and realistic assessment of informal care capacity is likely to be more effective and less costly than responding after support arrangements have broken down. A sustainable NDIS should support participants while recognising the limits of unpaid caregiving and the wellbeing of those who provide it.

RECOMMENDATION 4. Transparency, Accountability and Resource Stewardship

(Schedule 1 Part 4, Schedule 1 Part 9 and Schedule 4) Key message: Participants and carers should be able to understand how decisions are made, what supports have been approved and how public resources are used to achieve participant outcomes. Policy principle: Transparency, accountability, administrative efficiency and whole-of-system resource stewardship are essential to participant confidence, procedural fairness and long-term NDIS sustainability.

Recommendations

 Improve transparency regarding support determinations, planning assumptions and decision making processes.  Provide clear explanations of what supports were requested, approved and funded, including any significant differences between the two.  Present support allocations in practical terms, including support hours, staffing ratios and assumptions regarding evenings, weekends and community participation where relevant.  Reduce administrative duplication and improve consistency of forms, evidence requirements and communication processes.  Improve coordination between disability, health and aged care systems to minimise fragmentation, duplication and cost-shifting. \

RATIONALE

Participants should be able to understand how funding decisions translate into actual supports. Funding allocations are often presented as budget categories rather than practical support arrangements. Participants and carers should be able to understand support hours, staffing assumptions, support ratios and any significant differences between requested and approved supports. Greater transparency would support informed decision making, more effective use of funding and improved financial planning while reducing disputes, administrative burden and unnecessary plan reviews. Participants should also be able to understand how decisions were reached. This includes the expertise informing decisions and how competing sources of evidence were weighed. Decisions are often communicated through NDIA representatives without clear visibility of who reviewed the evidence or how differing professional opinions were reconciled. Greater transparency would strengthen confidence in decision-making and procedural fairness. Improving transparency and reducing administrative complexity represent important opportunities to strengthen NDIS sustainability. Public debate often focuses on the cost of participant supports, yet significant resources are also consumed by reassessments, reviews and documentation requirements. Reducing duplication would allow a greater proportion of resources to be directed towards participant supports, intervention and participant outcomes. Poorly defined boundaries between disability, health and aged care systems create a risk of cost-shifting rather than genuine efficiency. When disability supports are reduced without corresponding increases in

alternative services, responsibility frequently transfers to hospitals, primary care services, mental health services, aged care providers or unpaid carers. Cost-shifting rarely eliminates need; it simply moves costs and risks elsewhere. This may reduce expenditure within one part of the system while increasing pressures on health services, carers and other publicly funded systems, often with poorer outcomes for participants. Effective stewardship of public resources requires consideration of whole-of-system impacts rather than costs within individual programs. Better integration between disability, health and aged care systems is more likely to improve participant outcomes, reduce duplication and support long-term sustainability than approaches that primarily transfer responsibility between sectors. A sustainable NDIS requires confidence that public resources are being used effectively, transparently and fairly. Improving accountability, reducing unnecessary complexity and strengthening participant understanding would support both participant outcomes and scheme sustainability.

CONCLUSION

A sustainable NDIS is one that supports participation, safeguards dignity and uses public resources where they achieve the greatest benefit. The long-term sustainability of the NDIS is an important goal. However, sustainability is more likely to be achieved through better assessment, greater transparency, reduced duplication, effective use of clinical expertise and realistic recognition of informal care than through restricting access to supports. Disability is complex, cumulative and often fluctuating. Decisions should reflect how people function and participate in everyday life, not solely diagnosis or isolated task performance. The proposed reforms provide an opportunity to strengthen both participant outcomes and public confidence in the Scheme. Achieving this balance will require transparent decision-making, proportionate evidence requirements and support arrangements that recognise the realities of disability, participation and caregiving.

Sustainable reform should focus on improving how the Scheme assesses, plans and allocates support, ensuring that resources are directed where they deliver the greatest benefit for participants and the community.

STATEMENT ABOUT THE USE OF ARTIFICIAL INTELLIGENCE

Artificial intelligence (AI) tools were used to support drafting, editing and document refinement. The submission was developed through extensive author-directed prompting, critical appraisal and iterative revision. All substantive content, policy analysis, recommendations and conclusions were determined by the author and informed by professional expertise across health, disability and research sectors, systems-level knowledge of health and disability policy, and lived experience as a family carer. AI functioned as an editorial and drafting aid only. The author maintained full control over the conceptual framework, messaging, evidence, recommendations and final content throughout the development of the submission.