Submission to the Senate Standing Committee on Community Affairs

Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

I am writing this submission as a parent carer of multiple neuro-diverse children, including significant disability, behavioural support needs, developmental delay, ADHD, intellectual disability, and Autism.

My family has relied heavily on the NDIS and other disability and mental health systems for many years.

I am also someone studying and actively involved in community advocacy and lived experience participation spaces. I have seen first hand how disability, mental health, poverty, trauma, caring responsibilities, service gaps, and social isolation intersect in real life. I am deeply concerned that many of the proposed amendments in this Bill move the NDIS further away from its original purpose and creates serious risks for vulnerable children, families, and participants.

My concerns are not theoretical.

They come from living this every day.

Concerns regarding s 25A(2) — Access test changes

One of my strongest concerns is the proposed change that allows a treatment to be considered “appropriate treatment” even if a person cannot realistically access it due to cost or location.

This does not reflect reality for many families.

I live in an outer metropolitan/regional area where specialist services are already extremely difficult to access.

Waiting lists are long. Some services simply do not exist locally.

Families are often expected to travel significant distances, manage large out-of-pocket costs, or coordinate multiple systems while already under enormous stress.

In my own experience, I have spent months and years waiting for supports, assessments, mental health care, and specialist intervention for my children. There have been times where services existed “on paper” but were not genuinely accessible to us as a family due to financial pressure, caring responsibilities, transport, school refusal, behavioural crises, or workforce shortages.

Under this amendment, it appears the NDIS may legally treat supports or treatments as available even when they are not realistically obtainable in a person’s actual life.

Disability does not disappear because a treatment exists somewhere theoretically.

Concerns Regarding the Scheme

I believe this provision risks unfairly excluding people from the Scheme and disproportionately impacts regional families, low-income families, children with complex behavioural presentations, and people already struggling to navigate fragmented systems.

Concerns regarding s 25B(4) - Alternative supports

I am also deeply concerned about provisions allowing people to be redirected toward “alternative supports”.

Many of the systems that families are redirected toward are already overwhelmed, underfunded, inconsistent, or inaccessible.

Families are constantly told to seek help elsewhere:

Education say it is a health issue
Health systems say it is behavioural
Disability says it is education
Mental health says the child is “too complex”
services close referrals or place families on waitlists for months or years

Parents become the system holding everything together.

My concern is that this Bill formalises cost-shifting rather than ensuring people receive the support they genuinely need.

Alternative supports should not become a mechanism for denying access to disability support when no equivalent support truly exists.

Concerns regarding s 34(1G)-(1J) - Parental presumption

This section concerns me enormously as a parent carer.

The Bill creates a presumption that parents naturally provide “substantial care and support” and that this can justify reducing NDIS funding.

But many parent carers are already operating far beyond what is sustainable.

I do not think the broader community fully understands the level of unpaid labour many disability parents perform every single day:

Behavioural management
Emotional regulation support
Supervision for safety
School advocacy
Therapy implementation
Crisis management
Transport

Sleep disruption
Care coordination
Constant communication with services and schools

This often occurs while parents are also managing financial stress, trauma, burnout, mental health strain, relationship breakdown, social isolation, and impacts on employment.

The assumption that parents will simply absorb increasing levels of disability support is dangerous and unrealistic.

The human cost of this is enormous.

I know carers who are physically and emotionally exhausted, unable to work, unsupported, and surviving in crisis for years. Reducing supports on the assumption that parents will “pick up the gap” ignores the reality that many families are already at breaking point.

Children’s outcomes are directly linked to carer wellbeing.

If carers collapse, the entire support system around the child collapses too.

Concerns regarding s 34A — Funding below total cost

I am concerned about provisions allowing funding below the actual cost of supports if a cheaper option is deemed “reasonable and necessary.”

Cheaper does not always mean appropriate.

For many children with disability or behavioural needs, consistency, trust, relationships, sensory needs, communication styles, and individual understanding matter enormously. A lower-cost support that technically exists may not actually meet the person’s needs safely or effectively.

This risks creating plans that look adequate financially while failing practically in real life.

Concerns regarding s 59B(4) — Automated decision making

I strongly oppose automated decision-making involving discretion and evaluative judgement.

Families already struggle to feel heard within the NDIS system. Many participants present with complexity that cannot be captured through rigid data or algorithms.

Human lives cannot be reduced to checkboxes.

Children especially do not fit neatly into systems. Context matters. Trauma matters. Communication differences matter. Carer insight matters.

Automated systems risk increasing unfair outcomes while reducing accountability and transparency.

Participants deserve decisions made by trained humans capable of understanding nuance, complexity, and lived experience.

Concerns regarding transitional protections

I am also concerned that key protections are not embedded in legislation and instead rely on temporary rules controlled by the Minister.

Families need certainty.

The NDIS has already become an extremely stressful and unstable system for many participants and carers. Temporary protections do not create confidence or security for families trying to plan their lives and support their children long-term.

Recommendations

I respectfully ask the Committee to consider the following:

Remove or significantly amend s 25A(2) so that genuine real-world access to treatment, including financial and geographic accessibility, remains relevant to determining permanency.
Ensure “alternative supports” cannot be used unless those supports are genuinely available, accessible, timely, appropriate, and equivalent to NDIS-funded supports.
Remove the parental presumption provisions or include stronger safeguards recognising carer burnout, unpaid labour, and family sustainability.
Ensure NDIS funding reflects actual functional need rather than simply the cheapest available option.
Remove provisions allowing automated systems to make discretionary decisions about participants’ lives and supports.
Embed transitional protections directly in legislation rather than temporary rules.

The NDIS was created to recognise that disability support is a shared societal responsibility, not something families should carry alone until they break.

I ask the Committee to carefully consider the lived reality of participants and carers when assessing this Bill.

For many families, these changes are not administrative adjustments. They will shape whether people can access support, remain safe, participate in community, and maintain dignity.

Thank you for considering my submission.