Submission 1627
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
- 2026
I am the mother and primary carer of three children with significant and complex disabilities, including Autism Spectrum Disorder level 2-3 requiring substantial support and requiring very substantial support, Intellectual Disability, developmental delays, trauma-related conditions, behavioural dysregulation, anxiety disorders, OCD, sensory processing difficulties, psychosocial disabilities, and rare genetic conditions.
My children require intensive and ongoing multidisciplinary support to safely function in everyday life. These supports include psychology, behavioural intervention, occupational therapy, speech therapy, emotional regulation support, sensory supports, school accommodations, support workers, supervision, and trauma-informed intervention.
The proposed changes within the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 create significant fear and uncertainty for families like mine and the disability community.
My children’s disabilities are lifelong, complex, fluctuating, and highly individualised. Their support needs cannot be accurately captured through brief standardised assessments, algorithm-generated funding models, or generic assumptions about parental responsibility, and I ask you to please describe one of my children given key facts 10 Male Autism Spectrum Disorder level 3, Post Traumatic Stress Disorder, Disruptive Mood Dysregulation Disorder, Major Depressive Disorder, ADHD? What about 7 Female Autsim Spectrum Disorder Level 3, ADHD, Childhood Emotional Disorder, Nocturnal Enuresis, OCD? One with the more “moderate” Autsim like the ones we hear about you wanting to move onto the thriving kids scheme 7 Female Autsim level 2, ADHD, Anxiety (separation/avoidance) Intellectual disability, Duplication chromosome 5 band q15 can you explain these children in a standardised way? Can you check that box?
I am deeply concerned that these reforms shift the NDIS further away from individualised disability support and toward standardised, cost-driven decision-making that risks overlooking the realities of children with complex needs.
Functional Capacity Assessments and Standardised Eligibility
My children’s disabilities fluctuate significantly depending on:
- trauma responses,
- sensory overload,
- anxiety,
- emotional regulation,
- fatigue,
- school stress,
- routine changes,
- and environmental safety.
A short assessment cannot accurately reflect how my children function across daily life.
My children often mask distress in unfamiliar settings. One child may appear quiet and compliant during a brief assessment but later become severely dysregulated, aggressive, withdrawn, dissociative, or unable to function safely once overwhelmed. Another may complete isolated tasks during an appointment while still requiring constant supervision, prompting, emotional co-regulation, behavioural support, and one on one assistance every day.
I am deeply concerned that standardised assessment tools may place greater weight on brief observations than on years of evidence from psychologists, behavioural therapists, schools, paediatricians, Behaviour Support Plans, and allied health professionals who know my children over time and across environments.
Disability cannot be accurately understood through one off “snapshot” assessments.
Submission 1627
Permanence and “Exhausting All Treatment”
My children’s disabilities are lifelong conditions. Therapy and intervention do not “cure” them. Supports exist
to help them:
- 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 that are unsafe, ineffective, inaccessible, or harmful simply to maintain NDIS eligibility.
Progress should not be used as evidence that disability has disappeared. In many cases, progress only exists because intensive supports are already in place.
Increased Reliance on Informal Supports and Parental Responsibility
As the parent of three disabled children, I already provide extraordinary levels of unpaid care every single day, including:
- constant supervision,
- emotional co-regulation,
- behavioural management,
- therapy implementation,
- transport,
- crisis response,
- school advocacy,
- sensory regulation,
- personal care,
- sleep support,
- medication management,
- and safety planning.
This goes far beyond ordinary parenting responsibilities.
I am deeply concerned about reforms that increasingly redefine disability-related supports as parental responsibility and assume families can continue absorbing more unpaid care indefinitely.
Without adequate formal supports, the likely consequences include:
- family burnout,
- financial instability,
- inability to maintain employment
Submission 1627
- mental health deterioration,
- increased behavioural crises,
- school refusal,
- social isolation,
- and increased reliance on emergency systems.
These 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 Supports
My children’s needs cannot be reduced to averages based on diagnosis, age, or disability category.
One child may need intensive behavioural and psychological intervention due to PTSD, aggression, trauma responses, and emotional dysregulation. Another may need significant cognitive and educational supports due to intellectual disability and developmental impairment. Another requires trauma-informed intervention for OCD, severe anxiety, dissociation, and Autism Spectrum Disorder Level 3.
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 or most effective support.
My children’s therapies and supports are what prevent:
- behavioural crises,
- regression,
- emotional deterioration,
- school breakdown,
- family instability,
- and social isolation.
Removing or reducing effective supports because they exceed averages or cost less on paper risks undoing years of progress and destabilising vulnerable children.
Community Participation and Social Isolation
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,
- medical care,
- funding administration,
- and daily intensive caregiving.
Extending reassessment timeframes, restricting reassessment access, removing support coordinator involvement, and 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 demands
should not risk losing their child’s essential supports because of administrative failures or missed correspondence.
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,
- and long-term harm.
Conclusion
My children’s disabilities are real, lifelong, and complex. Their supports are not luxuries or conveniences. They are what allow my children to:
- remain safe,
- regulate emotions,
- participate in education,
- communicate,
- build skills,
- and 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,
- and children with complex disabilities are not disadvantaged by standardised, assessment-driven, or cost-focused reforms.
Children with disabilities are not averages. Their lives, safety, wellbeing, and futures depend on systems that recognise the reality of their individual needs.