Submission 1559

Submission to the Senate Community Affairs Legislation Committee

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

About Me

I am the parent of two children who are NDIS participants.

My daughter is 10 years old and has Autism Spectrum Disorder Level 2 and ADHD. She also has significant motor coordination difficulties, joint hypermobility and is currently undergoing further assessment regarding Developmental Coordination Disorder (DCD).

My son is 6 years old and has Autism Spectrum Disorder Level 2. He attends an autism support class within a mainstream public school.

I am also the primary coordinator of both children’s supports. Like many parents, I spend a substantial amount of time arranging therapies, attending appointments, communicating with schools, implementing recommendations at home and advocating for my children to access education and community life safely.

Like many parents of disabled children, I have significantly reduced my workforce participation in order to coordinate supports, attend appointments and meet my children’s needs.

I support efforts to ensure the NDIS remains sustainable into the future. However, I am concerned that several provisions in this Bill risk reducing access to support, increasing uncertainty for families and shifting greater caring responsibilities onto parents without adequately recognising the realities of disability.

The NDIS Is Not About Extras In Our Family

Much of the public discussion around NDIS reform focuses on reducing spending.

For my children, NDIS supports are not luxuries.

Psychology support helps my daughter manage significant anxiety and remain engaged in education.

Occupational therapy helps address executive functioning challenges, sensory regulation and participation in daily life.

Submission 1559

Physiotherapy assessment has helped identify significant movement difficulties and hypermobility that affect my daughter’s participation alongside her peers.

My son’s supports help him attend school, build communication skills, access learning and reduce the likelihood of crisis situations that can lead to school difficulties or exclusion.

Without these supports, difficulties do not disappear. They simply shift onto families, schools and health systems.

I am concerned that the Bill increasingly frames disability support through the lens of cost containment rather than participation, inclusion and long-term outcomes.

Neurodivergent Children Already Miss Out On Too Much

One aspect of disability that is often overlooked is the extent to which neurodivergent children can be excluded from ordinary childhood experiences.

Many children participate in school camps, athletics carnivals, cross country events, excursions, sport, clubs, performances, birthday parties and other social activities with little additional support.

For many neurodivergent children, participation in those same activities requires significant preparation, accommodations, therapeutic support, school adjustments and parental advocacy. Even then, participation may not always be possible.

My daughter has been unable to participate in several experiences that many of her peers take for granted because the combination of anxiety, sensory demands, social expectations and physical challenges makes them overwhelming.

Families are not seeking special treatment. We are often simply trying to give our children the opportunity to be included in ordinary childhood experiences and to reach their potential, whatever that may look like for them.

The NDIS plays a critical role in helping children build the skills, confidence and capacity needed to participate more fully in education, community life and relationships.

I am also concerned that future reforms may increasingly favour standardised, group-based or centrally designed supports over individualised supports.

While group programs, can be valuable for some children, they are not appropriate for very child. Both of my children have often required highly individualised approaches because of their specific combinations of needs, sensory profiles, anxiety, communication differences and support requirements.

Submission 1559

One of the strengths of the NDIS has been its recognition that disability is not a one-size-fits-all. The supports that help one child thrive may be ineffective or even counterproductive for another.

As reforms are considered, I urge policymakers to preserve the principles of choice, control and individualisation. Families should not be forced into standardised support models simply because they are easier to adminster or deliver at scale.

Concerns About the New Functional Capacity Assessment

I am particularly concerned about the proposed functional capacity assessment framework.

My daughter’s challenges do not fit neatly into separate categories.

Her autism, ADHD, anxiety, motor coordination difficulties and hypermobility interact with one another.

For example:

• anxiety affects participation
• motor difficulties affect confidence and willingness to engage
• executive functioning difficulties affect independence
• social communication challenges affect access to peer relationships and communication with adults

These factors combine to create disability-related impacts that are greater than the sum of each individual diagnosis.

My daughter is also currently undergoing assessment regarding Developmental Coordination Disorder (DCD), following physiotherapy assessments identifying significant motor coordination difficulties and joint hypermobility.

I mention this because it illustrates how disability rarely exists in neat diagnostic categories. Her physical, emotional, executive functioning and social participation challenges interact with one another. The combined impact on daily functioning cannot easily be separated into individual diagnoses.

These difficulties affect her participation in many aspects of childhood that are often taken for granted. Activities such as running, organised sport, athletics events and other physically demanding school activities can be significantly more challenging for her than for her peers. These challenges also affect confidence, willingness to participate and social inclusion.

Submission 1559

However, because she is academically capable and attends a mainstream school, these difficulties are not always immediately visible. This highlights the importance of assessment frameworks recognising the interaction between physical, cognitive, emotional and social factors rather than viewing each area of functioning in isolation.

I am also concerned that a standardised functional assessment may not adequately capture masking and compensatory strategies, particularly in autistic children and young people.

My daughter is a bright and capable child. When appropriate supports and accommodations are in place, she is able to achieve impressive things. In Year 3, she achieved Strong to Exceeding results across all NAPLAN domains, and she has also achieved success in art competitions.

However, these achievements should not be interpreted as evidence that her disability has .diminished or that support is no longer required. Rather, they demonstrate the effectiveness of the supports around her.

Her NAPLAN participation included disability adjustments, including a quieter setting, additional time and the option of breaks. Even with these supports, the writing assessment initially caused significant anxiety.

There is a risk that a functional assessment framework could view achievement as evidence of low support needs without recognising the accommodations, therapy input, school adjustments, parental advocacy and personal effort that made those achievements possible.

Disability does not disappear when a person succeeds. Success is often the result of appropriate support being available.

Academic achievement tells only part of the story.

My daughter is often able to demonstrate her knowledge and abilities when tasks are adapted to suit her needs. For example, she participated in her school’s speech competition by preparing and recording her speech at home rather than delivering it live in front of an audience. She also participated in the classroom component of a spelling bee but was unable to continue to the finals held in the school hall in front of an audience.

Similarly, she has been unable to participate in school camp, cross country and athletics events due to the combined impact of anxiety, sensory demands and physical participation challenges.

These examples illustrate a common reality for many neurodivergent children. They are capable of achieving at a high level, but may require accommodations, alternative formats or reduced environmental demands in order to participate. Without those adjustments, opportunities for participation can be lost entirely.

Submission 1559

This is particularly relevant for autistic children, especially girls, who may mask difficulties and work extremely hard to meet expectations.

An assessor may observe a capable and successful child without seeing the anxiety, exhaustion, preparation, recovery time and support required to sustain that level of functioning.

I worry that assessment systems can mistake capability for capacity.

My daughter is capable of many things, but often at a significantly higher personal cost than many of her peers. The effort required to manage anxiety, sensory demands, executive demanding challenges, social expectations and motor coordination difficulties is largely invisible.

If assessments focus only on what a child can achieve, rather than what it takes for them to achieve it, there is a risk that support needs will be underestimated.

A person’s highest level of performance should not be mistaken for their typical level of functioning, nor should success achieved through support become a reason to remove that support.

I support Recommendation 10 in the submission from The Growing Space that the assessment tool should not commence until it has been designed, publicly released, tested and properly consulted on.

Concerns About Changes to “Reasonable and Necessary”

I am particularly concerned about provisions that increase reliance on informal supports and parental responsibility.

As the parent of two disabled children, I already provide extensive unpaid care. This includes:

• coordinating appointments
• managing medication
• attending school meetings
• implementing therapy strategies
• supporting emotional regulation
• assisting with participation in community activities
• advocating for adjustments in education settings

Submission 1559

This work exists alongside ordinary parenting responsibilities.

I am concerned that the Bill assumes families have unlimited capacity to absorb additional caring responsibilities.

Many families have:

• multiple children with disability
• disabilities of their own
• limited informal support networks
• reduced workforce participation due to caring responsibilities

In my view, the benchmark should not be what a parent can be expected to endure. It should be what support a non-disabled child of the same age would reasonably require.

The legislation should also recognise that the cumulative impact of caring for multiple children with disability can be substantial.

The concerns raised in Recommendations 29 and 30 in The Growing Space submission closely reflect my own experience as a parent of two disabled children, particularly regarding parental responsibility, informal supports, and the sustainability of unpaid family care.

Early Intervention Matters

My children’s supports are intended to build skills and prevent future difficulties.

The value of therapy is not always immediate.

Sometimes progress looks like:

• preventing school refusal
• reducing anxiety
• avoiding mental health deterioration
• maintaining participation in education
• supporting social connection
• reducing family stress
• preserving future independence

The NDIS should not only respond when people reach crisis point.

Preventing crisis is often more effective, more humane and ultimately less costly.

I am concerned by changes that narrow eligibility or early intervention pathways and support retaining the existing approach to early intervention.

Submission 1559

Transparency, Review Rights and Automated Decision-Making

Families already face significant uncertainty in navigating the NDS.

Many struggle to determine:

• what can be claimed
• what evidence is required
• whether a support will be approved
• how decisions can be challenged

When decisions affect a child’s development, delays and uncertainty can have significant consequences.

I support stronger review rights, greater transparency and mechanisms that provide participants with confidence about funding decisions before they commit to spending.

I am also concerned about expanding automated decision-making before robust safeguards are in place.

My children’s circumstances are complex. A system that relies heavily on automated processes risks missing important context that cannot easily be captured through standardised forms or datasets.

Any adverse decision affecting eligibility, funding or claims should involve meaningful human review and provide the participant with an opportunity to respond to the concerns or information relied upon before the decision takes effect.

Conclusion

I support efforts to ensure the long-term sustainability of the NDLS.

However, sustainability should not be achieved by reducing access to supports through unclear assessment processes, increased reliance on unpaid family care, or reduced opportunities for review and oversight.

The NDIS has enabled my children to participate more fully in education and community life. It has also helped our family avoid crises that would likely place greater pressure on schools, health services and other government systems.

I urge the Committee to carefully consider the concerns raised by participants, families and disability organisations, and to amend the Bill so that sustainability is balanced with the rights, dignity, choice and control, inclusion and future potential of disabled Australians.