National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1208
To the Australian Government,
I am writing as a parent, a carer, and a person living every single day inside a reality that many policymakers discuss only in theory. I have two children with significant disabilities. One lives with severe autism, including continual aggression, self-injurious behaviour, and behaviours that place family members and carers at risk daily. My other child has significant disabilities associated with a rare genetic disorder and requires substantial ongoing support. Our family does not live with occasional difficulty. We live in continuous crisis management. Every day requires planning, supervision, emotional regulation, advocacy, risk assessment, and physical endurance. Sleep deprivation is normal. Hypervigilance is constant. We structure our lives around preventing harm — to our children, to siblings, to carers, and sometimes to ourselves. And now, while families like mine are already barely surviving, we are being told that the supports keeping our children safe may become harder to access, harder to reassess, more restricted, more standardised, and more dependent on whether exhausted families can somehow absorb even more responsibility. The proposed NDIS changes terrify families like ours. Not because we are asking for luxury. Not because we are asking for an unsustainable system. But because we already know what happens when supports fail. When support workers cannot be sourced. When behavioural supports are delayed. When reassessments are refused. When funding does not reflect complexity. When families are told to rely on “informal supports” that are already exhausted. When parents are expected to function as full-time therapists, crisis responders, nurses, behavioural specialists, advocates, administrators, and carers without breaking. Something has to give. And too often, what gives is the family. You speak about sustainability. But where is the discussion about the sustainability of carers? Where is the acknowledgement that many parents of profoundly disabled children are already physically and psychologically collapsing under the weight of care? Where is the acknowledgement that mothers, in particular, leave employment, lose income, lose superannuation, lose careers, lose social participation, and often lose their own health trying to keep their children safe? Where is the recognition that many carers themselves become disabled through years of chronic stress, sleep deprivation, injury, trauma, and burnout? Families are already absorbing enormous costs that never appear in budget papers:
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1208
lost income, destroyed homes, debt, chronic illness, social isolation, relationship breakdown, trauma, emergency interventions, and lives placed permanently on hold. Yet despite all of this, the public narrative surrounding these reforms increasingly frames participants and families as though we are burdens to be controlled, costs to be reduced, or potential fraud risks to be monitored. The repeated language about “fraudsters and shonks” has caused real harm. Families fighting desperately for legitimate supports are now forced to justify our children’s existence within a political debate dominated by suspicion and cost- cutting rhetoric. Participants with complex needs are being publicly reframed as financial liabilities instead of human beings deserving safety, dignity, and support. Improvement does not equal recovery. A child may improve with therapy and still remain profoundly disabled. A participant may gain skills and still require lifelong supports. A family may appear functional while privately operating in survival mode. The proposed reforms appear to assume that if support could theoretically exist somewhere else — health, education, community systems — then the NDIS can step back. But “available on paper” is not the same as genuinely accessible. Waitlists stretch for years. Regional services are scarce. Workforce shortages are critical. Families are already falling through gaps between systems that each insist someone else should carry responsibility. The greatest fear many of us carry is not today. It is the future. What happens when we are no longer here? What happens when ageing parents can no longer physically manage violent behaviours? What happens when a sole carer becomes sick? What happens when families finally reach breaking point? What happens when unsupported children become unsupported adults? What happens when there are no safe housing options, no responsive behavioural supports, and no meaningful pathways for high-complexity participants? Families know the answers to these questions because we are already seeing them. Hospital admissions. Mental health collapse.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1208
Carer burnout. Family breakdown. Relinquishment. Homelessness. Police involvement. Institutionalisation by another name. These are not hypothetical outcomes. They are the predictable consequences of systems that withdraw support from people with profound and lifelong disability. I am asking the Government to understand one critical truth: Parents cannot be the disability system forever. Love does not eliminate exhaustion. Commitment does not eliminate trauma. Parental responsibility does not create infinite capacity. There must be a genuine carve-out for high-complexity participants that is clinically informed, independently assessed, and protected from blunt administrative cost-cutting. There must be meaningful appeal rights. There must be safeguards against inappropriate standardisation. There must be recognition of the disproportionate harm carried by carers. There must be acknowledgment of the cascading damage caused by previous support failures. There must be independent oversight where lives and safety are at stake. Most importantly, there must be honesty. Because families like mine are not asking for excess. We are asking for survival. We are asking for dignity. We are asking for safety. We are asking for a future where our children are not abandoned once their parents can no longer hold the entire system together alone. Please listen to the people living this reality before reforms of this scale cause irreversible harm. We have all seen what happens when families are not supported, when families has not choice but to make unconscionable choices because they feel like they had no other choice.
We have all seen what happens when families are left without adequate support, when carers are pushed beyond exhaustion, and when people reach a point where they genuinely believe there are no safe or survivable options left. Across Australia, there have been devastating cases where families living under unbearable pressure have made unconscionable decisions because they felt abandoned by the systems that were supposed to help them. These tragedies do not occur in isolation. They occur in the context of chronic exhaustion, fear, trauma, lack of respite, inadequate services, and years of unsupported caregiving.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1208
Every time supports are reduced, delayed, or made harder to access, families are asked to absorb more — emotionally, physically, financially, and psychologically. But families are not infinite resources. Policy decisions made in offices and budget papers have real consequences inside homes already operating at breaking point. When governments fail to adequately support people with profound and complex disabilities, the burden does not disappear. It is transferred onto parents, siblings, carers, emergency systems, hospitals, and ultimately society itself. No family should ever be left feeling that they are completely alone, overwhelmed, and without options.
How many more families are going to end up being a sickening statistic.