Submission Regarding the National Disability Insurance Scheme Amendment Bill 2026

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 how vital disability supports are but also highlights fragility when caregiving realities aren’t fully recognised.

My daughters have very diverse presentations needing significant care; one daughter faces severe disabilities including rare genetic syndrome, global developmental delay, complex feeding difficulties, communication challenges requiring extensive multidisciplinary support due to recognisable signs in reports, equipment use, specialist appointments, therapies showing obvious differences from peers without such conditions; another presents differently verbally perceptive bright yet may seem ‘high functioning’ hiding intense anxiety, overwhelming emotions/sensory experiences leading daily struggles for our whole family impacting every aspect of living together deeply affecting us emotionally safely transitioning through day-to-day activities.

Concerns about reforms moving towards narrow functional assessments ignoring lived reality families face: Children not isolated systems impacted on entire households, families perform invisible labour keeping children regulated safe functionally despite appearances suggesting otherwise. A child’s functionality often dependent upon ongoing support rather than independence alone many appear coping because parents absorb extraordinary levels stress exhaustion therapeutic efforts advocacy emotional regulation financial sacrifices behind scenes. Our lives feel like running two completely different emergency responses simultaneously: visible medicalised alongside hidden sensory relational distressing both exhausting.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 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,, 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,someofitis always spilling throughthe gaps because themdemands exceed what one personorfamilycan sustainably absorb alone.The proposed reforms worry mebecause they risk making supports availableonlyoncefamilies have already reached breaking point. TheNDIS should not wait until:

• parents leave the workforce entirely,
• relationships break down, -siblings become significantly impacted, children are excluded from education, familiesbecomesociallyisolated, mental health deteriorates, or carers experience burnoutandcollapse.Early intervention anda flexiblesupportarewhatpreventthese outcomes.I am also deeply concerned aboutproposed changes toreasonableanecessarysupports.In practice,many supportsthat may appear optional on papera reactuallywhata keep families functioning,and chilren safe regulated , an ableto participate indaily life.Therapies,e motional regulation suppor ts,c ommunicationsupp ort s,f eeding supp orts,d evel opmental su pports,r espite and f lexible funding ar enot luxuries.Theyaret he difference between sustainabilityanda crisis. The propo sed shift towardtighter budgetingandreduced flexibilityalso concernsme greatly.Familiescaringfor disabled children do no toperate in predictable or linear ways.Hospitalisations,illness.develop mentalchanges,t herapywaitlists,sensory regressions,,emotional crises,a nd changing support needs requireflexibility.Rigid systems fail complex fam ilies.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1821

Concern about Standardized Assessments

text: ‘I am particularly concerned about the use of standardized assessments to determine support eligibility and funding.’

Captured Performance vs Invisible Labour

text: ’ A child may appear calm during an assessment because their parent has spent hours preparing, regrading, accommodating, reassuring, and preventing distress beforehand. The assessment captures only the final performance,’

Changes to Review Processes

text: ’ Families already spend enormous amounts of time gathering reports,…’

Emotional Toll text:‘The emotional toll of constantly having to prove your child is disabled “enough”’

is immense.’,

Support for Sustainability Efforts

text: ‘# I support efforts to improve the sustainability of the NDIS…quality services’,

Families Beyond Capacity

text:‘# However,’, family_functioning_beyond_capacity:’,

Asking For Enough Support

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

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

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

What I believe should change:

• Adopt a whole-family approach to disability support.*
• Recognise how caregiving impacts parents’ siblings’, employment relationships*, mental health*
• Preserve flexibility when planning complex changing needs*
• Ensure neurodevelopmental assessment is conducted with expertise from professionals who understand rare conditions high-masking presentations*
• Protect meaningful independent reviews appeals*
• Prioritise early intervention preventative supports instead of crisis-driven responses*
• Acknowledge functioning can be heavily dependent on support*
• Value lived experience alongside clinical assessments*
• Prevent reforms disproportionately harming children autism, developmental delay sensory needs emotional regulation difficulties or complex disabilities*

Closing

I advocate reform improving fairness transparency provider accountability long-term sustainability. However sustainable NDIS recognises reality disability supports families collapse preserves dignity inclusion safety disabled people caring every day urge Committee reconsider narrow access reduce flexibility weaken review rights rely standardised assessments fail capture realities within family.