National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1027
Submission to the Senate Community Affairs Committee
Re: Proposed NDIS Bill – Sections 34A and 45C
Concerns regarding reductions to Social and Community Participation funding, undefined financial sustainability powers, and automated decision-making
My name is . I am the mother, legal guardian and primary advocate for my son , a 36-year-old man living with a permanent disability, Prader-Willi Syndrome, with associated detrusor sphincter dyssynergia, recurrent bowel obstruction, chronic urinary tract infections, and the need for intermittent catheterisation. I hold guardianship with Special Powers confirmed under the South Australian Guardianship and Administration Act 1993 sections 32 and 57.
I care deeply about the NDIS because I have lived through both systems: the old disability model before the NDIS and the more individualised approach that came after it. I have seen firsthand the difference that proper disability supports make to safety, dignity, independence, and mental health. I have also seen the devastating consequences when vulnerable people lose choice and control.
Before 2020, lived for 15 years in supported accommodation under the old system, where families had very little control over supports or funding. During this period, he experienced verbal and physical abuse, sexual assault, neglect, institutional trauma, and repeated mental health crises resulting in severe self-harm. He presented to the Emergency Departments approximately 6–10 times each year. continues to live with PTSD directly linked to those environments.
Since moving into more independent living with NDIS-funded core supports and family oversight, ’s quality of life has improved significantly. His health is more stable, his emotional regulation is better, and he has reduced hospital presentations. However, this stability only exists because of NDIS supports, which help maintain functional routine, restrictive practices, emotional well-being, and safe engagement in the community.
I strongly oppose the proposed Bill because it risks returning people like to systems of isolation, institutionalisation, and crisis-driven care. The proposed 50% reduction to social and community participation funding from October 2026 would not simply reduce “activities”; it would remove preventative supports that keep vulnerable people mentally well, socially connected, and safely living in the community.
has Prader-Willi Syndrome, a lifelong neurodevelopmental and genetic condition characterised by intellectual disability, impaired executive functioning, obsessive behaviours, emotional dysregulation, anxiety, hyperphagia, requiring significant skilled support needs. Individuals with Prader-Willi Syndrome require structure, routine, supervision, and meaningful community participation to maintain emotional and behavioural stability. Social isolation and reduced engagement are known triggers for deterioration in mental health, behavioural escalation, and loss of independence.
For individuals with Prader-Willi Syndrome, appropriately managed restrictive practices and consistent one-on-one support are often non-negotiable components of safe care and community access. These supports must be delivered by trained and educated support workers who understand the clinical reasons for restrictive practices, including risk
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1027
management around food seeking, emotional dysregulation, vulnerability, and safety. The Disability Royal Commission has already highlighted the importance of properly regulated restrictive practices, staff education, safeguarding, and individualised support to prevent abuse, neglect, trauma, and institutional harm for people with disability
The proposed reduction to social and community participation funding under section 34A fundamentally misunderstands disability support. Community participation is not a luxury or recreation for people like . It is part of his functional support system. Activities in the community provide emotional regulation, social learning, behavioural stability, physical activity, routine, and reduced risk of mental health crisis. They also reduce long-term pressure on hospitals, emergency services, and aged or residential care systems.
The WHO Disability Assessment Schedule (WHODAS 2.0) specifically recognises participation in society, emotional impact of health conditions, barriers in the community, dignity, and the burden on family supports as core areas of disability impact. The assessment framework identifies difficulties with joining community activities, barriers in society, emotional impacts, and strain on family resources as central disability considerations. Removing funding from these areas ignores internationally recognised disability assessment principles.
I am also deeply concerned about section 45C and the broad powers relating to “financial sustainability.” The term appears undefined and overly broad. This creates uncertainty for participants and families and allows future governments to reduce supports without clear safeguards, transparency, or evidence-based criteria. Decisions affecting vulnerable Australians should not rely on vague fiscal language that can later be interpreted expansively.
The Bill appears to prioritise cost containment over individualised assessment and human rights obligations. Families like mine already contribute enormous unpaid support. We assist financially with rent, bills, advocacy, coordination, emotional support, and crisis prevention and care so he can continue living independently with NDIS core supports. Reducing funded supports simply transfers greater burden back onto ageing families and carers.
I am particularly alarmed by the proposed use of automated decision-making systems and algorithms without meaningful individual review rights. Disability support decisions cannot safely be made through generic formulas or data systems that fail to understand complexity, trauma history, behavioural risks, fluctuating health conditions, or psychosocial impacts. A computer system cannot understand why ’s withdrawal to his room may signal a mental health decline, or why community participation prevents escalation and hospitalisation.
People with complex disability are not data points. Decisions about funding can determine whether someone remains safe in the community or enters a crisis. Any automated decision- making must include transparent criteria, human oversight, mandatory review pathways, and accessible appeal rights. No participant should lose critical supports because of an algorithmic process they cannot challenge.
I ask the Committee to consider what these reforms would mean in real life.
For , a 50% reduction in social and community participation funding would likely mean fewer structured outings, reduced supervision in the community, increased isolation,
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1027
worsening anxiety, behavioural decline, and higher risk of emotional dysregulation associated with Prader-Willi Syndrome and PTSD. Reduced engagement would place pressure back onto emergency departments, mental health systems, and family carers. It would undo years of progress toward stability and independence.
I respectfully recommend that the Committee:
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Reject any blanket reduction to social and community participation funding under section 34A.
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Require that all funding decisions remain based on individual functional capacity and evidence.
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Remove or clearly define “financial sustainability” provisions under section 45C to prevent arbitrary future cuts.
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Prohibit fully automated decision-making for NDIS funding without human oversight and accessible appeal rights.
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Recognise community participation as an essential preventative support for many people with disability, not a discretionary extra.
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Ensure families, guardians, clinicians, and lived-experience advocates are properly consulted before reforms are implemented.
The NDIS was created to provide choice, dignity, inclusion, and safety for Australians with disability. This Bill risks moving away from those principles and back toward systems that families like mine suffered and fought for decades.