Submission 1623

Dear Department of the Senate,

My name is , and I am the parent of my 26-year-old daughter, , who lives with a complex and lifelong disability. has been a participant in the NDIS since 2017, when the scheme was introduced in our area.

   experiences a severe intellectual disability, epilepsy, sleep apnoea, and

significant physical impairment. She is legally blind, non-verbal, incontinent, and lives with generalised anxiety disorder and severe self-injurious behaviours. She requires continuous, skilled support to remain safe and to participate in daily life. She lives at home with her mother and I, and every aspect of her wellbeing depends on consistent, suitable support.

I am writing to firmly oppose the NDIS Future Generations Bill 2026 as currently proposed.

The real impact of reduced social and community supports;

The proposed 50% reduction to social and community supports is not an abstract budget measure—it has direct, measurable consequences for safety, health, and quality of life.

Loss of community participation ability to engage with the community has taken years to build. With trained support workers who understand her communication needs, she can interact meaningfully and safely. Evidence consistently shows that supported community participation improves wellbeing, communication, and skill development for people with complex disabilities. Without these supports, will be effectively excluded from society.

Social isolation and mental health decline thrives on routine and structured social interaction. Her disability limits her ability to understand sudden changes, and reduced access to the community will inevitably lead to isolation. Research demonstrates a strong link between social isolation and deteriorating mental health, particularly for individuals with intellectual disabilities. In case, this directly results in increased distress and behavioural escalation.

Functional decline and increased health risks depends on supported activities such as hydrotherapy to maintain mobility and prevent deterioration. Without appropriately supervised access, she cannot safely participate. The loss of these supports will lead to reduced mobility, increased falls risk, and preventable health decline—outcomes that will ultimately increase long-term system costs.

Submission 1623

Increase in self-harming behaviours

We have already observed the effects of reduced supports following a recent funding cut. self-harming behaviours have increased significantly. This is consistent with established evidence that reductions in structured support and routine are associated with worsening behaviours of concern in people with severe disabilities.

Barriers to essential care

    relies on support to attend medical appointments and access life-sustaining medications. Reduced funding directly jeopardises her ability to receive essential care.

Loss of known supports

    requires known, consistent support workers who understand her communication and behavioural needs. Workforce instability caused by funding cuts risks losing these critical relationships. Evidence across the disability sector shows that continuity of care is essential for safety, trust, and behavioural stability.

Unsustainable pressure on informal carers (carer burnout)

My wife and I already experience significant carer fatigue. The supports receives are not a luxury—they enable us to manage essential household responsibilities, coordinate her care, and sustain our capacity to continue in our caregiving roles. Without them, the burden becomes unsustainable, increasing the likelihood of crisis and far more costly interventions.

It is important to address a common misconception: community supports are not simply recreational. For , activities that may appear ordinary—such as visiting a café—are structured, therapeutic opportunities that build communication, social understanding, planning, and emotional regulation. These are evidence-based developmental outcomes, not discretionary extras.

Concerns regarding proposed policy changes;

I strongly oppose the following elements of the Bill:

The “permanence” and “appropriate treatment” criteria

    has been under lifelong care from qualified medical specialists who tailor interventions to her individual needs. A centralised or standardised definition of "appropriate treatment" risks overriding clinical expertise could result in unsafe or unsuitable care decisions. Good policy should defer to evidence-based medical judgement, not replace it.

The proposed functional capacity assessment and reassessment process

A standardised functional assessment cannot adequately capture complexity. Individuals with profound disabilities do not fit neatly into uniform criteria, and poorly designed assessments risk underestimating support needs.

Additionally, mandatory reassessments create significant unintended consequences:

Submission 1623

• Financial strain on families required to obtain updated reports

• Increased demand on already stretched healthcare services

• Administrative burden without meaningful clinical benefit, particularly in cases where conditions are lifelong and unchanged

Support needs are not temporary, negotiable, or theoretical. They are constant, complex, and supported by both lived experience and extensive evidence across disability care.

Policies that reduce supports do not eliminate need—they simply shift the cost to families, the health system, and crisis services, often at far greater human and financial expense.

I urge you to reconsider these proposed changes and ensure that the NDIS continues to uphold its foundational principle: enabling people with disability to live safe, significant, and connected lives.

Thank you for considering story and the broader implications these reforms will have on individuals like her.