Submission Regarding the National Disability Insurance Scheme Amendment Bill 2026

Submission 1821

I am a parent and primary carer navigating both profound disability and less-visible neurodevelopmental support needs within the same family. My family’s experience with the NDIS has shown me both how vital disability supports are and how fragile families can become when systems fail to recognise the full reality of caregiving.

My daughters have very different presentations, but both require significant support. One of my daughters has profound and visible medical and developmental disability needs, including a rare genetic syndrome, global developmental delay, complex feeding difficulties, communication challenges, and extensive multidisciplinary support requirements. Her disability is immediately recognisable to professionals because there are medical reports, feeding equipment, specialist appointments, therapies, and obvious developmental differences.

My other daughter presents very differently. She is verbal, emotionally perceptive, bright, and in some settings may appear “high functioning.” However, this masks the enormous emotional, sensory, behavioural, and regulatory support she requires every day. She experiences intense anxiety, sensory overwhelm, emotional dysregulation, separation distress, and difficulties with transitions and emotional safety. These needs profoundly affect our family’s daily functioning.

I am deeply concerned that the proposed reforms move further toward narrow functional assessments and observable impairment while failing to understand the lived reality of disability within families.

Children are not isolated systems. Disability impacts whole families.

The reforms appear to assume that if a child can speak, attend school, mask distress temporarily, or present well in a structured assessment, then they may require fewer supports. This fundamentally misunderstands many neurodevelopmental conditions and the invisible labour families perform to keep children regulated, safe, and functioning.

A child’s functioning is often support-dependent, not support-free.

Many children only appear to cope because parents are absorbing extraordinary levels of stress, exhaustion, therapeutic labour, advocacy, emotional regulation, and financial sacrifice behind the scenes.

Our family life often feels like running two completely different emergency responses temporarily. One is visible and medicalised. The other is emotional, sensory, and relational. Both are exhausting.

Submission 1821

Some days I feel less like a parent and more like an air traffic controller trying to prevent multiple crashes at once while running on no sleep. Every outing, meal, bedtime, therapy appointment, emotional escalation, sensory trigger, or medical issue requires planning, vigilance, negotiation, and regulation.

There is no true downtime.

My nervous system is constantly braced for the next crisis, whether that is feeding complications, medical coordination, screaming meltdowns, emotional dysregulation, school concerns, therapy scheduling, sleep disruption, or trying to meet the competing needs of two children who both require intensive support in completely different ways.

Parenting children with disability can feel like carrying water in your hands while running a marathon. No matter how much love, organisation, resilience, or effort you bring, some of it is always spilling through the gaps because the demands exceed what one person or family can sustainably absorb alone.

The proposed reforms worry me because they risk making supports available only once families have already reached breaking point.

The NDIS should not wait until:

• parents leave the workforce entirely,
• relationships break down,
• siblings become significantly impacted,
• children are excluded from education,
• families become socially isolated,
• mental health deteriorates,
• or carers experience burnout and collapse.

Early intervention and flexible support are what prevent these outcomes.

I am also deeply concerned about proposed changes to “reasonable and necessary” supports. In practice, many supports that may appear optional on paper are actually what keep families functioning and children safe, regulated, and able to participate in daily life.

Therapies, emotional regulation supports, communication supports, feeding supports, developmental supports, respite, and flexible funding are not luxuries. They are often the difference between sustainability and crisis.

The proposed shift toward tighter budgeting and reduced flexibility also concerns me greatly. Families caring for disabled children do not operate in predictable or linear ways. Hospitalisations, illness, developmental changes, therapy waitlists, sensory regressions, emotional crises, and changing support needs require flexibility.

Rigid systems fail complex families.

Submission 1821

I am particularly concerned about the use of standardised assessments to determine support eligibility and funding. Rare conditions, neurodevelopmental disability, autism, sensory profiles, anxiety, emotional dysregulation, and high-masking presentations cannot always be accurately captured in a short formal assessment process.

A child may appear calm during an assessment because their parent has spent hours preparing, regulating, accommodating, reassuring, and preventing distress beforehand. The assessment captures only the final performance, not the invisible labour required to achieve it.

I am also concerned about changes to review and tribunal processes. Families already spend enormous amounts of time gathering reports, proving disability repeatedly, navigatingureaucracy, and advocating for essential supports. Weakening review rights or making appeals less accessible risks leaving vulnerable families without meaningful pathways to challenge poor decisions.

The emotional toll of constantly having to prove your child is disabled “enough” is immense.

I support efforts to improve the sustainability of the NDIS and to address fraud, exploitation, and unethical provider behaviour. Participants and families also want accountability and quality services.

However, sustainability cannot come from shifting more burden back onto already exhausted families.

Families like mine are already functioning beyond capacity.

We are not asking for luxury. We are asking for enough support to keep our children safe, developing, included, and connected to their communities while preserving the stability of our family unit.

The NDIS was created because disability care should not rely entirely on unpaid labour performed behind closed doors by families already stretched beyond their limits.

I ask decision makers to remember that behind every “cost-saving measure” are real children, exhausted parents, impacted siblings, strained marriages, lost careers, chronic stress, and families trying desperately to hold everything together.

Submission 1821

• Reforms that reduce flexibility in plans and funding use.
• Weakening review and appeal rights through tribunal changes.
• Approaches that treat support needs as isolated to the individual rather than impacting whole families.
• Systems that require families to reach crisis point before receiving support.
• Increased assumptions about “parent responsibility” without acknowledging the extreme unpaid labour already undertaken by carers.

What Needs to Change

I believe the reforms should:

• Adopt a whole-family approach to disability support.
• Recognise the cumulative impact of caregiving on parents, siblings, employment, relationships, and mental health.
• Preserve flexibility within plans for complex and changing needs.
• Ensure assessments are conducted by professionals with expertise in neurodevelopmental disability, rare conditions, and high-masking presentations.
• Protect meaningful access to independent review and appeals.
• Prioritise early intervention and preventative supports rather than crisis-driven responses.
• Recognise that functioning can be heavily support-dependent.
• Value lived experience alongside clinical assessment.
• Ensure reforms do not disproportionately harm children with autism, developmental delay, sensory needs, emotional regulation difficulties, or complex disability.

Closing

I support reform that improves fairness, transparency, provider accountability, and long-term sustainability.

But sustainability cannot be built on the exhaustion of families already carrying impossible loads.

A truly sustainable NDIS is one that recognises the reality of disability, supports families before they collapse, and preserves dignity, inclusion, and safety for disabled children and the people who care for them every day.

I urge the Committee to reconsider reforms that narrow support access, reduce flexibility, weaken review rights, or rely heavily on standardised assessments that fail to capture the realities of disability within families.