Submission – National Disability Insurance Scheme Amendment (Securing the

NDIS for Future Generations) Bill 2026

Submitted by: Location: , New South Wales Role: Parent and primary carer

Executive Summary

I support the long-term sustainability of the National Disability Insurance Scheme (NDIS). However, I am concerned that aspects of the proposed amendments may unintentionally reduce access to supports for children with disability and increase pressure on families already providing substantial unpaid care.

My key concerns are:

Increased focus on accepted impairments may result in support needs being excluded because of how they are categorised rather than their actual functional impact.
Children with complex neurodevelopmental disabilities should be assessed as whole people, recognising the combined effect of multiple impairments and conditions.
Professional evidence from treating practitioners should be given appropriate weight and decisions should clearly explain when recommendations are not accepted.
Families should not be treated as an unlimited substitute for formal disability supports, particularly where no informal support network exists.
Regional families face workforce shortages, long waiting lists and limited service availability that may not be adequately reflected in policy assumptions.
Supports removed from the NDIS may not be realistically available through mainstream systems, particularly in regional communities.
Early intervention improves long-term outcomes and may reduce future support needs and government expenditure.
Delays, repeated evidence requests and inconsistent decision-making place significant burdens on families and may reduce confidence in the Scheme.
Sustainability should be achieved through improved outcomes, prevention and early intervention rather than increased barriers to support.

I encourage the Committee to ensure that any reforms remain focused on functional impact, evidence-based decision-making, participant outcomes and the long-term sustainability of families providing care.

I am the parent and primary carer of a six-year-old child with significant neurodevelopmental disability, including Autism Spectrum Disorder Level 2, ADHD, anxiety and chronic insomnia. I also care for two other children with additional needs and live in regional New South Wales.

I welcome the opportunity to provide a lived experience perspective on the proposed amendments to the National Disability Insurance Scheme.

I support the objective of ensuring the long-term sustainability of the NDIS. However, I am concerned about reforms that may unintentionally reduce access to supports, increase reliance on informal supports, or create additional barriers for children with disability and their families.

Key Concerns Regarding the Proposed Amendments

Based on my understanding of the proposed amendments, I am concerned about changes that may:

Narrow the connection between funded supports and a participant’s accepted impairment or impairments.
Increase the focus on attributing support needs to specific diagnoses rather than considering overall functional impact.
Place greater emphasis on what can reasonably be provided by families, informal supports or mainstream systems.
Create circumstances where participants may be denied supports because of how needs are categorised rather than the practical impact of disability on daily life.
Increase barriers for participants seeking review of decisions.
Have a disproportionate impact on children, whose development continues during critical periods where timely intervention can significantly influence long-term outcomes.
Have a disproportionate impact on regional and rural families who already face workforce shortages, long waiting lists and limited service availability.

Evidence-Based Decision-Making

In my experience navigating the NDIS, extensive reports, behaviour logs and professional recommendations have at times been met with assertions about what is considered “normal” for a child of a particular age, despite those assertions not appearing to be supported by identified clinical evidence.

Families Navigating the NDIS

Families navigating the NDIS are frequently required to obtain evidence from occupational therapists, psychologists, behaviour support practitioners, paediatricians, educators and other appropriately qualified professionals. This evidence often involves significant time, cost and emotional investment.

Where professional recommendations are not accepted, families should be able to clearly understand the reasons for that decision and the evidence relied upon in reaching an alternative conclusion.

I am concerned that, in some circumstances, families may receive decisions that appear to place greater weight on general assumptions regarding child development, family capacity or what is considered “typical” behaviour than on the detailed observations and assessments of professionals who have directly assessed and supported the participant.

A transparent and evidence-based framework should ensure that professional opinions are given appropriate consideration and that there is a clear rationale whenever recommendations are rejected, discounted or given limited weight.

Whole-Person Assessment and Impairment Attribution

I am concerned about legislative and policy changes that move away from considering a participant’s overall functional capacity and instead focus on individual accepted impairments in isolation.

For many participants, particularly children with neurodevelopmental disabilities, the impact of disability arises from the interaction of multiple conditions, impairments and functional limitations. In practice, it is often impossible to separate the effects of autism, ADHD, anxiety, sleep disorders, sensory processing differences and other co-occurring conditions.

A particular concern is that participants may experience genuine functional limitations arising from the combined effects of multiple disabilities and impairments, yet be denied supports because decision-makers attempt to attribute those limitations to a condition that is not considered relevant, has not been accepted, or is viewed as an environmental or family factor.

From the participant’s perspective, the impact on daily functioning remains the same regardless of how it is categorised administratively.

I am also concerned that increased emphasis on linking supports to specific accepted impairments may unintentionally create additional complexity for participants and families.

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Families may find themselves repeatedly required to demonstrate the connection between a support and a specific accepted impairment despite the practical reality that multiple impairments often contribute to the same functional difficulties.

This risks:

Increasing administrative burden
Delaying access to supports
Creating unnecessary disputes about impairment attribution
Diverting resources away from outcomes-focused decision-making

The focus should remain on understanding the participant’s overall functional capacity and identifying the supports required to enable participation, development and independence.

Family Responsibility, Informal Supports and Crisis Prevention

Parents are expected to provide care, guidance and supervision to all children. However, there is a significant difference between ordinary parenting and the level of support required to safely care for a child with substantial functional impairments arising from disability.

Many families raising children with disability provide levels of supervision, intervention, coregulation and behavioural support that extend well beyond what would ordinarily be expected for a child of the same age.

The focus should remain on the participant’s functional capacity and support needs rather than assumptions about what families should be able to provide without assistance.

Families raising children with significant disability are often simultaneously managing:

Therapy appointments
School engagement
Behavioural support
Disrupted sleep
Sibling impacts
Employment pressures
Financial strain

Family Support Systems

In our family’s circumstances, we have no local informal support network available to assist with caring responsibilities. When professional supports are unavailable or reduced, there is often nobody available to step in and fill the gap.

Family members are an important source of care and support, but they should not be treated as an unlimited substitute for disability services.

While families play a critical role in supporting children with disability, policy should recognise that family capacity is not an inexhaustible resource. When support systems rely on families absorbing increasing levels of responsibility without adequate assistance, the risk is not only poorer outcomes for participants but the eventual failure of the support system itself.

There is a risk that policy settings assume families will continue absorbing increasing levels of responsibility without fully considering what happens when that capacity is exhausted.

When family systems begin to break down under sustained pressure, the consequences can include:

Carer burnout
Deterioration in mental health
Loss of employment
Increased family conflict and relationship breakdown
Impacts on siblings
School disengagement
Increased contact with crisis-based services

In some circumstances, inadequate support may ultimately result in greater reliance on:

Emergency healthcare services
Hospital services
Mental health services
Child protection systems
Other government-funded crisis responses

These outcomes are not only harmful for participants and families, they are often significantly more costly than providing appropriate preventative supports earlier.

Regional Disadvantage, Mainstream Systems and Early Intervention

As a family living in regional New South Wales, I am concerned that legislative changes may have a disproportionate impact on children and families outside metropolitan areas.

Even where supports are funded, regional families frequently face:

Long waiting lists
Workforce shortages
Limited provider choice
Travel requirements
Delayed access to specialist services

In regional communities, funding does not automatically create access. Even where supports are approved, families may wait months for appropriately qualified providers to become available.

I am also concerned about any approach that assumes supports excluded from the NDIS will be readily available through mainstream systems such as health, education or community services.

In our own experience, one of my children is currently waiting to access public services with no certainty regarding when support may become available. This highlights the gap that can exist between a service being theoretically available and it being practically accessible.

If supports are no longer available through the NDIS, and equivalent services are unavailable through mainstream systems, the practical outcome is not that support is provided elsewhere. The practical outcome is that support is not provided at all.

Families are then left with:

Lengthy waiting lists
Significant out-of-pocket expenses
Reduced workforce participation
Increased caring responsibilities

Unmet support needs

Early intervention is particularly important for children with developmental disabilities. During childhood there are critical periods where targeted supports can help develop communication, emotional regulation, independence, social participation and daily living skills.

My goal as a parent is not for my child to require increasing levels of support throughout his life. My goal is to help him develop the skills and independence needed to participate as fully as possible in his community and, over time, reduce reliance on formal supports where possible.

Delays during childhood can have lifelong consequences. Children cannot simply wait years for support while disputes are resolved or while services become available.

Consistency, Transparency and Review Processes

Families often spend significant time gathering evidence from occupational therapists, paediatricians, psychologists, behaviour support practitioners, educators and other professionals.

When families are repeatedly asked to provide further information, respond to requests for material already supplied, or address concerns that appear unrelated to the participant’s functional impairments, confidence in the process can be undermined.

I am also concerned by processes that seek to look beyond the participant’s own evidence and functional impairments into broader family circumstances where support needs have already been extensively documented by treating professionals.

While family context may sometimes be relevant, there is a risk that excessive focus on family circumstances can divert attention away from:

The participant’s disability
Functional limitations
Professional evidence
Demonstrated support needs

Families should be able to have confidence that similar circumstances will be assessed in a consistent manner regardless of who is making the decision.

Concepts such as ordinary parenting responsibilities, family capacity, informal supports and environmental factors can be interpreted differently by different decision- makers if clear guidance is not provided.

Consistency is important not only for fairness, but also for maintaining confidence in the integrity of the NDIS and reducing unnecessary reviews and appeals.

Sustainability Through Outcomes

I support the objective of ensuring the long-term sustainability of the NDIS.

However, sustainability and access should not be viewed as competing objectives.

A sustainable NDIS should seek to maximise participant outcomes, independence and community participation. Effective supports, provided at the right time, can help:

Build skills
Reduce future support needs
Improve long-term outcomes
Support family stability
Reduce reliance on crisis services

There is a risk that measures designed primarily to reduce short-term expenditure may lead to higher long-term costs if participants are unable to access supports that prevent escalation of needs, reduce crisis situations or promote independence.

This is particularly relevant for children, where early intervention and capacity-building supports have the potential to influence lifelong outcomes.

The measure of success should not be how many supports can be excluded from the Scheme, but whether participants are supported to develop skills, increase independence, participate in their communities and achieve better long-term outcomes.

Closing Remarks

Like many families, we are not seeking unnecessary supports. We are seeking the supports required to give our children the best opportunity to develop skills, participate in their communities and build independence over time.

The long-term sustainability of the NDIS is important. However, sustainability should be achieved through evidence-based decision-making, early intervention, consistency, effective support and improved participant outcomes rather than through measures that risk increasing barriers to support or shifting greater responsibility onto families already providing substantial unpaid care.

I thank the Committee for considering this submission and the lived experience of families navigating the NDIS on behalf of children with disability.

Kind regards,

NSW