NDIA Accountability Project

This project is in DRAFT

Concerns regarding standardised assessments for children with complex disabilities (Family or carer experience)

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

Submission 1627

NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

  • Date: redacted: s45 - Material obtained in confidence I am the mother and primary carer of three children with significant and complex disabilities including Autism Spectrum Disorder level 2–3 which requires substantial care; Intellectual Disability along with developmental delays trauma-related conditions behavioral dysregulation anxiety disorders OCD sensory processing difficulties psychosocial disabilities rare genetic conditions. My children require intensive ongoing multidisciplinary supports to safely function everyday life These include psychology behaviour intervention occupational therapy speech therapy emotional regulation support sensory supports school accommodations support workers supervision traumainformed interventions The proposed changes within this amendment create fear uncertainty families like mine disability community My children’s lifelong complex fluctuating highly individualised needs can’t captured brief standardised assessment algorithmgenerated funding models generic assumptions parental responsibility please describe my child given key facts Male ASD Level Post Traumatic Stress Disruptive Mood Major Depressive ADHD What about Female Autsim Spectrum Disorder Level ADHD Childhood Emotional Enuresis OCD One moderate Autistic similar ones you want move thriving kids scheme female autism level ADHD Anxiety separationavoidance intellectual disability Duplication chromosome q Can explain these children standardized way check box I deeply concerned reforms shift further away from individualized disability toward costdriven decisionmaking risks overlooking realities Children Complex Needs Functional Capacity Assessments Standardised Eligibility My children’s disabilities significantly depend on:
  • trauma responses
  • sensory overload
  • anxiety
  • emotional regulation
  • fatigue school stress routine changes and environmental safety Short assessments cannot accurately reflect how they function daily Life Often mask distress unfamiliar settings Child may appear quiet compliant during a brief assessment later become severely dysregulated aggressive withdrawn dissociative unable to safely once overwhelmed Another completes isolated tasks appointment still requires constant supervision prompting emotional co-regulation behavioural support one-on-one assistance every day Deeply concerned that standardised tools place greater weight short observations years evidence psychologists behaviour therapists schools paediatricians Behaviour Support Plans allied health professionals who know over time environments Disability not understood through snapshot assessments

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

Submission 1627

Permanence and “Exhausting All Treatment”

My children’s disabilities are lifelong conditions. Therapy and intervention do not ‘cure’ them. Supports exist:

  • function safely,
  • communicate,
  • regulate emotions,
  • participate in education, -and improve quality of life. I am deeply concerned that families may be expected to continually prove they have exhausted every possible treatment before receiving support. My children have already experienced:•medication side effects, -emotional deterioration, -increased behavioural dysregulation, anxiety escalation,and distress during interventions that were unsuitable for them.Families should not be forced to pursue medications, therapies or interventions which are unsafe ineffective unaffordable inaccessible harmful simply to maintain NDIS eligibility.Progress should not be used as evidence disability has disappeared In many cases progress exists because intensive supports are already place.Increasing Reliance on Informal Supports Parental ResponsibilityAs parent three disabled children I provide extraordinary levels unpaid care single day includingconstant supervision emotional co-regulationbehaviour management therapy implementationtransportcrisis response school advocacy sensory regulation personal caresleep suppor medication managementsafety planningThis goes beyond ordinary parenting responsibilities.I deep concern reforms increasingly redefine disability related supports parental responsibility assume can continue absorbing more unpaid indefinitely.Without adequate formal supports likely consequences includefamily burnout financial instability inability maintenance employment.

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

Submission 1627

  • mental health deterioration,
  • increased behavioral crises,
  • school refusal,
  • social isolation, -and increased reliance on emergency systems. The impacts disproportionately affect women, particularly mothers. as a woman and primary carer, i am deeply concerned about how increasing unpaid caring expectations may affect: • financial independence, • employment participation, superannuation , mental health,, long-term economic security,,,and women experiencing domestic violence or coercive control .Reducing disability supports can increase dependency, isolation, and vulnerability for women already carrying enormous caregiving burdens.

Funding Caps Standardised Budgets And Lower-Cost SupportsMy Children’s needs cannot be reduced to averages based on diagnosis age Or disability category.One child May need intensive behavioural psychological intervention due PTSD aggression trauma responses and emotional dysregulation Another may require significant cognitive educational support Due intellectual disability developmental impairment another requires Trauma informed Intervention OCD severe anxiety dissociation Autism Spectrum Disorder Level3.Their Needs are entirely individual.I Am deeply Concerned About: • Support caps., standardised budgets algorithm generated Statements of Supports broad Category funding reductions,and Increased emphasis On cheaper alternatives. The cheapest support is not always the safest most effective support.My children’s therapies and supports Are what prevent:- Behavioural crisis regression emotional Deterioration School breakdown family instability and Social IsolationRemoving reducing Effective supports because they exceed Averages cost less paper risks undoing years Of progress destabilising vulnerable children

Community Participation social Isolation

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

Submission 1627

Community participation supports are not optional extras for my children. These supports are what allow them to:

  • safely leave the home,
  • access the community,
  • attend appointments,
  • build independence,
  • practise emotional regulation,
  • develop social skills, -and participate in ordinary life experiences. A trip to the supermarket, school event, or medical appointment may require extensive disability support due to sensory overload, emotional dysregulation, anxiety, supervision needs, communication difficulties, or trauma responses. Reducing social and community participation funding risks: -increased isolation, worsening mental health,behavioural deterioration,and greater dependence on already overwhelmed families.

Reassessments, Administrative Burden, and Loss of Supports Families caring for children with complex disabilities are already overwhelmed managing:

therapy schedules,	behavioural crises,school communication,mmedical care,funding administration,aand daily intensive caregiving.Extending reassessment timeframes, restricting reassessment access, removing support coordinator involvement,& increasing NDIA information gathering powers create enormous added pressure on vulnerable families.I am deeply concerned about proposals that allow:

-plan suspension, support revocation,,or participant loss due to missed communication or delayed responses.Families experiencing: trauma,domestic violence,mental health crises,hospitalisation,burnout,housing instability,or overwhelming caregiving demandsshould not risk losing their child’s essential supports because of administrative failures or missing correspondence.

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

Submission 1627

Foundational Supports and System Uncertainty

I am deeply concerned about children being redirected away from the NDIS into Foundational Supports or Thriving Kids systems that are not yet fully proven, funded, accessible, or clearly defined. Children with significant disabilities cannot simply “wait” while replacement systems are developed. Removing supports before alternatives are operational risks:

  • regression,
  • mental health deterioration,
  • school breakdown,
  • increased family crisis,
  • long-term harm.

Conclusion

My children’s disabilities are real, lifelong, and complex. Their supports are not luxuries or conveniences. They allow my children to:• remain safe.• regulate emotions.• participate in education.• communicate.• build skills.• engage with the community.I ask the Senate to ensure that:- disability support remains genuinely individualised,- multidisciplinary clinical evidence stays central,- families are not forced to absorb unsustainable levels of unpaid care,- meaningful appeal rights stay protected,- Children with complex disabilities are not disadvantaged by standardised assessment-driven cost-focused reforms.Children with disabilities are not averages. Their lives safety wellbeing futures depend on systems recognising reality their needs.