Submission 126
23.05.2026
to: Committee Secretary, Community Affairs Legislation Committee
r e : Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
i am writing as a mother, carer, advocate, and educator from Western Australia who is raising three neurodivergent children with significant disabilities. Families like mine are deeply frightened by the proposed NDIS changes and what they may mean for our children’s futures.
My children live with complex disabilities including Autism Level 2, PDA profiles, Selective Mutism, anxiety, intellectual disability, seizures, emotional dysregulation, hypotonia, developmental delays, communication difficulties, and genetic conditions. Their disabilities impact every aspect of daily life, safety, education, emotional wellbeing, and community participation.
the proposed reforms create serious concern that children with complex and co-occurring disabilities may lose essential supports or be pushed into vague “foundational supports” systems that are not yet properly established or accessible. Families are deeply worried about tighter eligibility criteria, reduced recognition of multiple disabilities, increased waiting periods, and the possibility that only one “primary disability” may be recognised despite the reality that disabilities overlap and compound one another daily.
For children like mine, disability cannot be separated into neat categories. Their communication difficulties, anxiety, sensory needs, emotional dysregulation, intellectual disability, physical challenges, and trauma responses all interact together and affect their functioning, safety, and quality of life. Even basic community participation often requires significant planning, supervision, environmental supports, and assistance from carers or support workers.
families are also concerned that invisible disabilities such as PDA, selective mutism, anxiety, masking behaviours, and sensory dysregulation are often misunderstood or overlooked in assessment settings.
another major concern for families like mine is the proposed increased reliance on “functional capacity” assessments to determine eligibility and supports. While functional capacity is important, these assessments often fail to accurately capture the realities of neurodivergent children, particularly those with PDA profiles, selective mutism, anxiety, masking behaviours, sensory dysregulation, and fluctuating presentations.
My children’s capacity changes depending on the environment, stress, sensory load, familiarity, emotional safety, and support available around them. On some days, they may appear capable in short clinical settings, while at home or in the community they experience severe dysregulation, shutdowns, aggression, communication difficulties, elopement risks, or complete inability to cope with everyday demands.
Submission 126
Functional capacity assessments conducted in artificial environments over limited periods of\ntime cannot fully measure the cumulative impact of complex disabilities across an entire day,\nweek, or lifetime. They also fail to recognise the immense amount of unpaid support, co-\regulation, supervision, planning, prompting, and crisis management families already provide\nbeside closed doors just to maintain basic functioning.
A real fear exists that children who mask well, particularly autistic girls, or children whose\needs fluctuate will be assessed as “functioning better” than they truly are and therefore\nloses access to critical supports. Removing support because a child appears to cope briefly in\nan assessment does not mean the disability has disappeared — it simply means families are\ncarying the burden privately until they reach crisis point.
Many neurodivergent children cannot simply “perform” their disability in a short \naffirmation appointment with a stranger, especially those masking struggles clinically/unfamiliar.\Assessments failing account for trauma responses anxiety fluctuating function risk creating dangerously inaccurate representations actual needs.
My children age fifteen twelve youngest four years old currently at early intervention stage.\Therapists specialists identified ongoing essential long-term communication emotional regulation independence learning future participation school community life Early is luxury reason progress Delays barriers accessing during these can have lifelong consequences.
Families like ours NDIS keeps our safe regulated connected education community able participate meaningfully life Supports therapy respite mentoring workers transport assistance community prevents burnout breakdown mental health crises hospital admissions worsening outcomes.
Community participation also frequently misunderstood optional recreational reality essentials building communication emotion confidence independence social understanding safety awareness future participation education employment society Many disabled where skills developed safely appropriate support.
Like many spend enormous amounts time coordinating therapies school specialist appointments behavioural strategies supervision prevention The financial administrative placed already significant risks increasing that further.
The impacts entire including siblings carers capacity stability when adequate unavailable. Carers functioning under exhaustion managing complex limited little.
Submission 126
Without adequate supports, the burden does not disappear – it shifts onto exhausted families, schools, hospitals, emergency departments, mental health systems, and child institutions. Families are already struggling under immense pressure, and many are errorified of what further reductions may mean for their ability to continue safely caring for their children at home.
As an educator, I also see firsthand the impact inadequate supports have within school systems. Schools are increasingly supporting children with highly complex needs while already under intense pressure themselves. Educational staff cannot replace therapeutic, behavioural, disability or community supports. When children do not receive appropriate supports early and consistently, impacts often manifest as disengagement from learning, school refusal, emotional dysregulation, unsafe behaviours, social isolation, and worsening mental health outcomes.
The provision of preventative support is significantly more effective, humane, and financially responsible than crisis-driven intervention. Reducing existing supports doesn’t remove need—it delays interventions until families and institutions reach breaking point. Investing in early intervention, regulation supports, therapies, mentoring, respite services, and access to local resources reduces likelihoods of far costlier responses later on.
A focus that assesses a person’s capacity “completely alone” fails to reflect reality regarding disabilities & modern healthcare; independence frequently relies upon environmental aids, therapy sessions, equipment availability, carer assistance, accessible communities, plus suitable treatments – removing these does nothing towards increasing autonomy but instead diminishes safety levels alongside overall quality life experiences.
We remain concerned about expectations requiring individuals exhaust all treatment options before receiving permanent recognition for their condition(s). Not every available option proves easily accessed due affordability constraints/geographic limitations coupled workforce shortages impacting regional areas accessing necessary medical care.
While acknowledging NDIS improvements are needed along with long term sustainability goals - reform efforts should prioritize provider accountability enhancements while curbing price gouging practices through improved worker training programs whilst preventing fraud activities reducing administrative waste rather cutting back essential provisions vulnerable children receive within family settings!
Persons living disability deserve dignity flexibility choice control genuinely individualized aid packages Families shouldn’t be expected trust replacement systems not yet fully operational when current support networks removed
The government is urged:
- pause the legislation
- properly consult with people with disability, carers, educators, nurses, therapists, and allied health professionals
- protect participant choice and control
Submission 126
- preserve access to therapies and community participation supports
- ensure replacement systems are fully operational before removing existing supports
- strengthen safeguards around functional capacity assessments and automated decision-making
- recognise the long-term impact of unpaid carer burnout on families and broader systems
- prioritise human outcomes over cost-cutting measures
Behind every policy decision is a real child and a real family trying desperately to hold everything together. Children with disability should not have to deteriorate before they are considered worthy of support.
Please listen to the lived experiences of disability families and the healthcare, education, and allied professionals who support them before more families reach breaking point.
Sincerely,
Mother, Carer, Advocate, Educator Western Australia