National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 126
23.05.2026
To: Committee Secretary, Community Affairs Legislation Committee
Re: 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.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 126
Functional capacity assessments conducted in artificial environments over limited periods of time cannot fully measure the cumulative impact of complex disabilities across an entire day, week, or lifetime. They also fail to recognise the immense amount of unpaid support, co- regulation, supervision, planning, prompting, and crisis management families already provide behind closed doors just to maintain basic functioning.
There is a real fear 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 lose access to critical supports. Removing support because a child appears to cope briefly in an assessment does not mean the disability has disappeared — it simply means families are carrying the burden privately until they reach crisis point.
Many neurodivergent children cannot simply “perform” their disability in a short appointment with a stranger, particularly children who mask their struggles in clinical or unfamiliar environments. Assessments that fail to account for masking, trauma responses, anxiety, or fluctuating functioning risk creating dangerously inaccurate representations of a child’s actual support needs.
My children are 15, 12, and my youngest is only four years old and currently at a critical early intervention stage. Therapists and specialists have identified that ongoing support now is essential to his long-term communication, emotional regulation, independence, learning, and future participation in school and community life. Early intervention is not a luxury — it is the reason children make progress. Delays or barriers to accessing support during these early years can have lifelong consequences.
For families like ours, NDIS supports are not extras. They are what keep our children safe, regulated, connected to education and community, and able to participate meaningfully in life. Supports such as therapy, respite, mentoring, support workers, transport assistance, and community access prevent carer burnout, family breakdown, mental health crises, hospital admissions, and worsening long-term outcomes.
Community participation supports are also frequently misunderstood as optional or recreational. In reality, these supports are essential for building communication, emotional regulation, confidence, independence, social understanding, safety awareness, and future participation in education, employment, and society. For many disabled children, community access is where critical life skills are developed and practised safely with appropriate support.
Like many families, we already spend enormous amounts of time coordinating therapies, school supports, specialist appointments, behavioural strategies, emotional regulation needs, transport, supervision, and crisis prevention. The emotional, financial, and administrative burden placed on families is already significant, and these proposed reforms risk increasing that burden further.
Disability impacts entire families, not just the individual participant. Siblings, carers, employment capacity, mental health, and family stability are all affected when adequate supports are not available. Many carers are already functioning under chronic exhaustion while trying to safely manage complex needs with limited support and little respite.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 126
Without adequate supports, the burden does not disappear — it shifts onto exhausted families, schools, hospitals, emergency departments, mental health systems, and child protection systems. Families are already struggling under immense pressure, and many are terrified 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 immense pressure themselves. Educational staff cannot replace therapeutic, behavioural, disability, or community supports. When children do not receive appropriate supports early and consistently, the impacts are often seen through disengagement from learning, school refusal, emotional dysregulation, unsafe behaviours, social isolation, and worsening mental health outcomes.
Preventative supports are significantly more effective, humane, and financially responsible than crisis-driven intervention. Reducing early and ongoing supports does not remove need — it delays intervention until families and systems reach breaking point. Investing in early intervention, regulation supports, therapies, mentoring, respite, and community access reduces the likelihood of far more costly crisis responses later in life.
The proposed focus on assessing what a person can do “completely alone” fails to reflect the reality of disability and modern healthcare. Independence is often only possible because of environmental supports, therapies, equipment, carers, community access supports, and appropriate intervention. Removing those supports does not increase independence — it reduces safety, participation, dignity, and quality of life.
We are also deeply concerned about expectations that individuals must exhaust all treatment options before disability is recognised as permanent. Not all treatments are accessible, affordable, appropriate, or successful, particularly for families already navigating financial strain, waitlists, workforce shortages, and regional barriers to healthcare access.
We understand that the NDIS requires improvement and long-term sustainability. However, reform should focus on improving provider accountability, reducing price gouging, improving worker training and standards, preventing fraud, and reducing administrative waste — not reducing supports for vulnerable children and families.
People with disability deserve dignity, flexibility, choice, control, and genuinely individualised supports. Families should not be expected to trust replacement systems that are not yet fully operational while existing supports are removed.
I urge the government to:
pause the legislation
properly consult with people with disability, carers, educators, nurses, therapists, and allied health professionals
protect participant choice and control
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 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