Counting the Cost

Hidden Labour, Administrative Compression and Cost Redistribution in NDIS Reform

Submitted by:

This submission reflects personal lived experience as a person with disability, parent, carer and community advocate, together with consideration of publicly available evidence, stakeholder discussions and disability policy literature.

Introduction – The Hidden Infrastructure Beneath Disability Support

This submission attempts to bring to light the likely impacts of proposed NDIS reforms. As I explored the proposed reforms, analysed both stakeholder discussion and government narrative, reviewed available evidence and considered the experiences of people with disability, carers and families, as well as my own lived experience, a recurring theme emerged.

Disability support needs do not disappear when formal supports are reduced, restricted or denied. Rather, the responsibility for meeting those needs is transferred elsewhere.

Throughout my own experience, and through the experiences of many others, I have repeatedly observed a hidden infrastructure operating beneath disability support systems. This infrastructure consists of significant unpaid care, administrative labour, advocacy, logistical coordination, vigilant supervision, emotional regulation, crisis management and practical support that allows formal systems to function effectively.

Much of this work is performed by families and carers. It is often invisible in policy discussions because it does not appear in budgets, annual reports or actuarial modelling. Yet it represents a substantial contribution of time, effort and personal sacrifice, borne by real people.

This burden is most often absorbed by families, and a disproportionate amount of that care labour falls to women. Alarmingly, it is also absorbed by paid carers beyond the scope of their formal role in circumstances where family or relational support is absent. As informal and paid support networks reach their limits, pressure is frequently displaced into schools, hospitals, housing services, mental health systems and other areas of government expenditure. Ultimately, however, the consequences are experienced most directly by people with disability themselves through reduced participation, increased hardship and unmet need.

Administrative Language and Invisible Labour

Much of the discussion surrounding disability support relies on administrative terminology such as “ordinary parental responsibility”, “informal supports”, “capacity building” and “functional capacity”. These terms serve important purposes within legislation, policy and service delivery. However, they can also obscure the extent of labour, coordination and practical effort required to sustain the lives of many people with disability.

Ordinary parental responsibility is generally understood to include the care, supervision and guidance that parents provide to their children. Yet, for many families of children with disability, the practical reality extends far beyond what most people would recognise as ordinary parenting. Parents often coordinate multiple services, attend appointments and therapies, advocate across systems, manage behavioural or emotional regulation needs, supervise safety and respond to ongoing crises. In some cases, these responsibilities continue well into adulthood.

Similarly, the term informal supports can create the impression that assistance provided by family members, friends and carers is incidental or low cost. In reality, informal supports often represent a highly structured and essential component of a person’s support network. Although unpaid, they frequently require significant commitments of time, physical, mental and emotional energy, often at the expense of income, career opportunities and personal wellbeing. Research consistently demonstrates that prolonged caregiving burden is associated with impacts on physical health, mental health and cognitive functioning, highlighting that informal care is not cost-free simply because it is unpaid.

Hidden Cost Redistribution and System Displacement

One of the central assumptions underpinning many reform discussions is that reducing expenditure within a particular program necessarily reduces overall societal cost. However, where disability support is concerned, this assumption may not always hold t true. Disability-related needs do not disappear when funding is reduced, restricted, delayed or denied. Instead, responsibility for meeting those needs is frequently redistributed into other systems, services and support networks.

This distinction between cost reduction and cost redistribution is important. While reductions in formal supports may decrease expenditure within the NDIS itself, the resulting burden may reappear elsewhere. Pressure may be displaced into health systems through increased presentations, delayed treatment or preventable deterioration. It may emerge within education systems through increased support requirements and behavioural challenges, or within housing, mental health, child protection and crisis response services. It is likely to be absorbed by families and informal support networks through increased unpaid labour, reduced workforce participation and diminished wellbeing.

The existence of disability-related needs is not itself created by the NDIS. Disability prevalence existed prior to the scheme and will continue to exist regardless of the administrative mechanisms used to fund support. The Productivity Commission’s original

4. Sustainability and the Elasticity Myth of Informal Care

Discussions of disability support often contain an implicit assumption that informal care will continue to absorb unmet need when formal supports are unavailable, reduced or delayed. While this assumption is rarely stated explicitly, it is frequently reflected in policy settings that rely upon family members, carers and existing support networks to bridge gaps in service provision. This creates what might be described as an elasticity assumption: the belief that unpaid care can continue to expand in response to increasing demand.

In practice, however, unpaid care is not infinitely elastic. Families and carers operate within real limits of time, health, finances, emotional capacity and physical endurance. While many provide extraordinary levels of support, this does not mean further responsibilities can be absorbed indefinitely without consequence.

Research consistently demonstrates that unpaid carers experience elevated rates of stress, disrupted sleep, reduced workforce participation, social isolation, financial disadvantage

and poorer physical and mental health outcomes. These effects are not confined to a small number of extreme cases. They are frequently reported across a wide range of caring circumstances and may accumulate over many years.

Importantly, the sustainability of informal care is influenced not only by the needs of the

person receiving support, but also by the circumstances of those providing it. Carers may themselves be ageing, disabled, chronically ill or managing other caring responsibilities. Many families are simultaneously navigating multiple children with disabilities, ageing parents, housing pressures, workforce demands, financial constraints and their own health needs. In these circumstances, assumptions regarding the availability of additional unpaid care may not reflect reality.

There is also a risk that the contribution of unpaid care becomes invisible precisely because it has historically been provided. A support system that appears sustainable may in fact be relying upon individuals who are already operating at or beyond their capacity. The absence of immediate crisis should not be interpreted as evidence that further demands can be absorbed without consequence.

This issue is particularly relevant when considering reforms that are expected to reduce participant numbers, restrict access pathways or reduce the availability of certain supports. If equivalent supports are not available elsewhere, the resulting care gap is likely to be transferred into existing family and community support networks. Where those networks are already operating near capacity, further burden transfer may increase the risk of caregiver burnout, declining health, reduced workforce participation and family instability.

For this reason, assessments of sustainability should extend beyond program expenditure alone. A system cannot be considered sustainable if its apparent stability depends upon the assumptive, unbounded and unrealistic expectation that unpaid labour from individuals who have already reached their practical limits will increase to fill the resulting gap in care. Long-term sustainability requires consideration not only of fiscal capacity, but also of human capacity and human endurance.

5. Functional Capacity, Visibility and Administrative Legibility

A recurring challenge within disability assessment systems is the distinction between visible need and actual need. Administrative systems necessarily rely upon evidence, documentation and observable indicators to make decisions. However, the aspects of disability that are easiest to observe are not always those that have the greatest impact on daily life.

Many people with disability develop strategies that allow them to compensate for challenges, adapt to limitations or maintain participation despite significant effort. Some individuals become highly skilled at masking difficulties in educational, workplace, social or assessment settings. Others achieve functional outcomes only through substantial assistance provided by family members, carers or support workers whose contribution may

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not be immediately visible to assessors. As a result, the level of support required to achieve a particular outcome may be obscured by the outcome itself.

This creates a risk that decision-making processes place greater weight on demonstrated performance than on the conditions required to sustain that performance. A person may be capable of attending school, employment, appointments or assessments while simultaneously experiencing significant exhaustion, distress, deterioration in health or reliance on extensive informal support. Similarly, families may maintain stability only through substantial unpaid labour that remains largely invisible within formal assessment frameworks.

This issue may be particularly relevant for people with fluctuating conditions, chronic illness, neurodevelopmental differences, mental health conditions and disabilities where masking and compensation are common. In these circumstances, observed functioning may provide only a partial picture of actual support needs. Approaches that focus primarily on what an individual can do at a particular point in time risk overlooking the cumulative effort required to achieve and maintain that level of participation.

The increasing use of standardised and objective assessment methods may improve consistency in decision-making. However, consistency should not be confused with accuracy or completeness. Any framework necessarily privileges certain forms of information over others. Care should therefore be taken to ensure that assessment systems remain capable of recognising fluctuating capacity, hidden disability, compensatory functioning and the contribution of informal supports.

The purpose of disability support systems is not simply to identify those who appear unable to function. It is also to understand the supports required for people to participate safely, sustainably and with dignity. For this reason, decision-making should seek to identify not only observable functioning, but also the often-invisible supports, adaptations and personal costs that make that functioning possible.

6. Delegated Legislative Powers and Long-Term Governance Risk

A recurring concern raised during discussion of the proposed reforms relates not only to the substance of individual policy changes, but also to the mechanisms through which future changes may be made. In particular, concerns have been expressed regarding the increased use of delegated legislation and legislative instruments to determine aspects of scheme operation, eligibility and support provision.

Delegated legislation serves an important administrative function. It allows governments to respond more quickly to emerging issues and avoids the need for primary legislation to be amended whenever operational adjustments are required. However, the flexibility provided by delegated powers also creates governance considerations that warrant careful attention.

Unlike primary legislation, legislative instruments can often be amended more readily and may receive less public scrutiny. While this flexibility may assist current governments in

Implementing Policy Objectives

Implementing policy objectives, the same powers remain available to future governments with different priorities, policy positions and fiscal objectives. Decisions regarding the scope of delegated authority therefore have implications that extend beyond the intentions of the government currently exercising those powers.

This issue is particularly relevant in the context of disability support, where participants, families and service providers frequently make long-term decisions based upon expectations of stability, predictability and continuity. Significant changes implemented through delegated mechanisms may create uncertainty regarding future eligibility, access pathways, support categories or assessment processes.

The question is not whether governments should possess the ability to administer and refine the scheme. Rather, it is whether the balance between flexibility, transparency, accountability and parliamentary oversight remains appropriate. The greater the reliance on delegated decision-making mechanisms, the more important it becomes that affected communities are able to understand proposed changes, participate in consultation processes and access meaningful review pathways.

Consideration should therefore be given not only to the immediate policy outcomes associated with delegated powers, but also to the long-term governance framework they establish. Legislative mechanisms introduced to address current circumstances may continue to shape decision-making long after the present reform cycle has concluded. Ensuring that those mechanisms remain transparent, accountable and subject to appropriate oversight is an important component of sustainable reform.

Reactive Reform Cycles and Structural Tension

Much of the public debate surrounding disability support is framed as a contest between competing priorities. Governments seek to contain expenditure, participants seek access to supports, service providers seek sustainable funding models and families seek adequate assistance to meet real-world needs. These objectives are often presented as though they can be simultaneously maximised. In practice, however, there are structural tensions between them that cannot always be resolved without trade-offs.

One way of understanding these tensions is through a simple systems framework. Policymakers, participants and the broader community frequently seek three outcomes simultaneously: broad access to support, high-quality and responsive services, and constrained expenditure. While each objective is individually reasonable, tensions emerge when attempts are made to maximise all three at the same time. Where one objective is prioritised, consequences are frequently displaced elsewhere within the system.

This dynamic may help explain the recurring cycle of expansion, concern, restriction and reform that has characterised disability policy in Australia and internationally. Periods of increased access often generate concerns regarding sustainability and cost growth. Efforts to contain expenditure may then reduce access, increase eligibility thresholds or restrict support categories. In turn, unmet need becomes visible elsewhere through increased

Conclusion – Sustainability Must Include Human Sustainability

This submission does not argue that disability support systems should be exempt from reform, scrutiny or considerations of fiscal sustainability. Nor does it suggest that governments face simple choices or unlimited resources. The challenges associated with designing, funding and administering disability support are complex, and competing priorities will always require difficult decisions.

However, throughout discussion of the proposed reforms, a recurring theme emerges. Disability support needs do not disappear when formal supports are reduced, restricted, delayed or denied. They are redistributed.

Sometimes this redistribution occurs within government systems through increased demand on health, education, housing or crisis services. Sometimes it occurs within communities through voluntary support networks. Frequently, it occurs within families through unpaid labour, reduced workforce participation, emotional burden and personal sacrifice. In many cases, it is absorbed directly by people with disability through reduced participation, increased hardship or unmet need.

These impacts are often less visible than program expenditure. They may not appear in budget papers, actuarial reports or administrative datasets. Yet they remain real costs borne by real people. Any assessment of reform impacts that considers only visible expenditure

• risks overlooking the broader systems within which disability support operates.

The central question posed throughout this submission has been simple:

Where does the added pressure produced by these reforms go?

Answering that question requires recognition of the hidden infrastructure that exists beneath formal disability support systems. It requires consideration of unpaid care, informal supports, administrative labour, advocacy, coordination and the many forms of invisible work that enable participation and sustain wellbeing. It also requires recognition that the capacity of families, carers and communities is not unlimited.

Ultimately, sustainable reform requires more than fiscal sustainability alone. It requires human sustainability. A system cannot be considered genuinely sustainable if its apparent success depends upon transferring increasing levels of burden onto individuals and families who are already operating at their practical limits.

If reforms are to achieve their stated and intended objectives, consideration should be given not only to what costs are reduced, but also to where those costs are relocated, who is expected to absorb them, and whether that burden can be carried safely, fairly and sustainably over time.