National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1709
27 May 2026
Submission on proposed NDIS changes
I am writing as the parent of a young person with very significant and permanent disability. My son has a severe intellectual disability and four additional impairments (undisclosed here). His disability affects every part of daily life: self-care, emotional regulation, communication, safety, community participation, decision-making, impulse control and his capacity to be left without close support.
I understand that the NDIS is reviewing how reasonable and necessary supports are assessed, with a stronger emphasis on functional impairment, disability support needs, consistency and sustainability. I agree that the Scheme must be sustainable and that funding should be directed to supports that genuinely improve the lives and safety of participants. However, I am deeply concerned that reforms focused mainly on cost control may underestimate the most basic and essential support for people like my son: direct care.
- Direct care is the most essential support for severe functional impairment
For my son, care is the foundation of all other support. Without trained, consistent carers, therapy goals cannot be practised, community participation cannot happen safely, and family life becomes unsustainable.
My son needs support not because he lacks motivation, but because his disabilities profoundly affect his ability to regulate, understand risk, communicate needs, tolerate frustration, transition between activities and remain safe. Care workers are often the people doing the actual daily work: helping him move through the community, preventing escalation, supporting routines, prompting communication, maintaining safety and giving him access to a life beyond the home.
In my experience, this direct care is not properly valued or funded. Plans can contain significant funding for assessments, reports, consultant therapy and professional recommendations, but insufficient funding for the hands-on support required to implement those recommendations in real life.
The NDIS should ensure that for participants with severe functional impairment, core care and direct support are treated as reasonable and necessary in the strongest possible sense.
- Community access often is essential for self-regulation- not recreational
For my son, community access is not about leisure. It is a safety, regulation and wellbeing need. Because of his dysregulation and inability to stay still, he often needs to go for walks or leave the house to regulate. However, he cannot do this independently or safely.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1709
He usually needs one carer, and often two carers, to remain safe in the community. This is because of his impulsivity, vulnerability, dysregulation, difficulty understanding danger, and the level of supervision required. Without appropriate support, the alternative is often isolation at home, increased behavioural escalation, family breakdown or risk to himself and others.
Community access should not be treated as a “less reasonable and necessary” support simply because it may look like recreation from the outside. For some participants, walking, movement and supported access to ordinary community spaces are essential forms of regulation and participation. They prevent crisis. They preserve dignity. They reduce the likelihood of more expensive interventions.
- Therapy must be practical, active and implemented with the participant
For a person with my son’s level of impairment, therapy cannot be effective if it is mostly report-writing, consultation or advice to others. Therapy needs to be hands-on, active, repeated and embedded in daily life.
At present, too much money can be absorbed by consultant therapists who assess, write plans and make recommendations, while the people actually doing the day-to-day work with the participant are underfunded, undertrained or under-supported. This creates a mismatch: the plan may look professionally supported on paper, but the participant does not receive enough practical help.
For people with severe intellectual disability, autism, ADHD and serious mental health conditions, therapy should be judged by whether it improves real daily functioning. This means therapists need to work directly with the participant and with support workers in practical environments. Funding should prioritise implementation, not just documentation.
I urge the NDIS to distinguish between therapy that is genuinely active and capacity-building, and therapy that becomes primarily administrative or consultative. Consultant input has a place, but it should not come at the expense of direct support and hands-on intervention.
- Functional impairment must include vulnerability, not only independence
I support the idea that support needs should not be based on diagnosis alone. Two people with the same diagnosis may have very different levels of impairment. However, functional assessment must be broad enough to capture real-world vulnerability.
I am also concerned for families whose children or young adults have milder disabilities than my son but are still significantly vulnerable. A person may appear more independent in basic tasks, yet still be highly vulnerable because of intellectual disability, poor judgement, social naivety, difficulty recognising danger, or susceptibility to manipulation and predation.
This is particularly important for participants with intellectual disability. Greater physical independence does not necessarily mean they are safe. Some people can catch public transport, use a phone or communicate verbally, yet still be at serious risk of exploitation, coercion, abuse or unsafe relationships.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1709
The proposed move toward support needs assessment must therefore include vulnerability, risk awareness, decision-making, social understanding and capacity to protect oneself. The NDIS Review and related reform material distinguish between functional capacity and support needs, noting that support needs assessment is meant to consider the person’s daily life and the help they require, not just what they can technically do. (Team DSC) This distinction must be preserved.
- Inflated prices and provider structures need serious reform
I am also concerned about inflated NDIS prices. Families see a large gap between the hourly rate charged to a participant’s plan and the amount received by the worker providing direct support. This creates frustration because plans are consumed quickly, while the person doing the caring work is not necessarily well-paid or well-supported.
I ask the government to consider whether NDIS pricing could be restructured more fairly. For example:
Could support worker prices be linked more directly to the relevant industry award wage, with transparent increases for experience, training, complexity and unsocial hours?
Could agencies be funded separately for administration, rostering, supervision and coordination, rather than taking a margin from every hour of direct support?
Could there be clearer limits on excessive mark-ups that do not translate into better care, better training or better worker retention?
Could government directly employ or auspice parts of the disability support workforce, as it does with teachers and other essential public-sector workers, to reduce market inflation and improve accountability?
- Recommendations
I ask that the NDIS reforms ensure:
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Direct care is recognised as an essential reasonable and necessary support for participants with severe functional impairment.
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Community access is understood as a regulation, safety and participation support, not a recreational activity.
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Two-to-one support is funded where risk, dysregulation, impulsivity or vulnerability make it necessary.
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Functional and support needs assessments include vulnerability to exploitation, predation and harm, especially for people with intellectual disability.
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Therapy funding prioritises hands-on, active, practical work with the participant, not only consultant reports and recommendations.
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Pricing reform targets inflated provider charges and market inefficiencies rather than reducing essential participant supports.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1709
- The government considers alternative workforce models, including direct employment or separate funding for coordination and administration, to reduce costs and improve quality.
Yours faithfully,
Parent of participant
VICTORIA