Submission 3184 — Ms Fiona Cameron — NDIS Future Generations Bill | External submission

Submission to the Senate Community Affairs

Committee – NDIS Future Generations Bill 2026

Attention: Committee Secretary, Senate Standing Committee on Community Affairs

Submitted by email: community.affairs.sen@aph.gov.au

Date: 29 May 2026

By: Fiona Cameron –

Contents

Submission to the Senate Community Affairs Committee – NDIS Future Generations Bill

2026 …………………………………………………………………………………………………………… 1

Who I am and why I care about the NDIS ……………………………………………………… 2
My position on the Bill ……………………………………………………………………………… 2
The issues that matters most to us …………………………………………………………….. 3
What this Bill could mean for Milli (real-life examples) ……………………………………. 3 Example A: Safety – falls, mobility and personal care …………………………………….. 4 Example B: Complex health needs that are easy to miss until it’s serious ………….. 4 Example C: Emotional regulation and behaviour – preventing crisis and self-harm . 4 Example D: Participation and contribution – the things that give life meaning ……… 5
Impact on our informal supports (me and Milli’s sibling) …………………………………. 6
What I want the Committee to recommend …………………………………………………. 7

I welcome the opportunity to make a submission to the Senate Standing Committee on

Community Affairs about the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026.

Who I am and why I care about the NDIS My name is Fiona. I live in Brisbane, Queensland. I am sole parent to Milli and her younger sister. I work full time.

Milli is a young woman of 18 years, with a severe and complex disability. She lives with:

cerebral palsy (left-sided weakness, low muscle tone, spasticity, motor coordination and balance issues)
vision impairment —legally blind, cortical vision impairment
intellectual impairment —that affects her ability to plan, organise, problem solve or understand daily tasks.
autism and anxiety
history of seizures and painful knee dislocations
hydrocephalus with a brain shunt. The NDIS is what makes it possible for Milli to live a safe life at home, to build daily living skills, and to participate in community life. Without the NDIS, Milli’s world would shrink to basic survival.

I oversee and coordinate Milli’s support team. I employ them directly. It is not unlike running a small business on top of my day job.

Milli’s team is stable, reliable, trustworthy and knowledgeable. We train them around Milli’s individual needs, so that Milli can feel safe and supported in her home and when out in the community. We choose staff carefully to ﬁnd people who align to our values— people we want in our home, sharing our private space, providing personal care for my daughter.

My position on the Bill I do not support this Bill in its current form.

I understand the NDIS must be sustainable, and I agree there must be strong safeguards. But the changes described for this Bill focus on tightening access, narrowing what can be funded, and giving government more power to reduce supports. For people like Milli, this reduces the safeguards and creates serious risks.

The issues that matters most to us I am worried about changes that make eligibility and supports more restrictive and less individual, including:

a new functional capacity testing and assessment process that may not represent the real-world interplay of her disabilities
the Minister having new powers to restrict supports, with fewer pathways to challenge decisions
reduced funding for essential activities in the community
tighter “rules” about what supports can be funded (even when those supports are preventing harm and keeping someone out of hospital or crisis services)
block funding — limiting choice of who can deliver Milli’s supports. For people with complex disability, the real question is not “Can they do this task once, in a test?” It is “Can they do this safely, reliably, repeatedly, and without harm, every day, in the real world?”

Milli’s disability is not neat or predictable. Her functioning changes with fatigue, pain, sensory overload, anxiety, bowel issues, and the environment. She may be able to learn how to do a task in isolation, with scaffolding, but because of the lack of executive functioning she may know how to execute this when needed

If the NDIS moves to more rigid tests and more frequent reassessments, families like ours will spend more time proving disability than living life. The administrative burden on families, and uncertainty about tomorrow, is already overwhelming.

Limiting Milli’s choice of supports to employees of large providers puts her at risk. Milli relies on a regular stable team who understands the nuance of her behaviours and how to manage her complex health care requirements. This can not be met by a revolving door of staff, which is typical of big service providers. This risks:

increased behaviours of concern
inappropriate management of her muscular skeletal system
reduced movement and deteriorating health
a need for increased supports across the whole system.

What this Bill could mean for Milli (real-life examples) I am very concerned about the proposed cuts to core funding.

Milli’s support is not “extras”. It is what prevents injury, hospital presentations, and family collapse.

Here are practical examples from our daily life.

Example A: Safety – falls, mobility and personal care

Milli is unsteady on her feet. She can only take a few steps before needing to hold on, and she is at risk of falls and painful knee dislocations.

In a normal morning, support isn’t just “helping”. It’s safety:

getting from bed to the toilet without falling
dressing safely (including remembering to use her weaker left side for stability)
using mobility aids properly and safely.[3] If supports are reduced, the likely outcome is:
more falls and injuries
more ambulance call-outs
more emergency department visits
more hospital and rehab costs (shifted to the health system). Example B: Complex health needs that are easy to miss until it’s serious

Milli has a brain shunt for hydrocephalus. Shunt problems can show up slowly and in confusing ways: changes in mood, sleepiness, behaviour, headaches, or a decline in balance.

We have lived through what happens when health issues are “intermittent” and hard to diagnose. We cannot rely on a rushed system to notice subtle warning signs.

Stable, skilled supports help keep the day-to-day baseline consistent so we can notice when something is wrong and act early. If supports are reduced, destabilised, or unfamiliar to Milli, warning signs are more likely to be missed, and problems become emergencies.

Example C: Emotional regulation and behaviour – preventing crisis and self-harm

Milli has autism and anxiety, and experiences meltdowns and distress from sensory overload or unexpected change. This can include screaming, biting her arm, or banging her head.

A stable team who knows Milli well reduces distress and prevents escalation. We rely on familiar routines and trusted relationships.

Recent shift notes show how quickly health issues or demands can trigger avoidance behaviours and distress, and how support workers use calm coaching and compromise to keep Milli safe and functioning (for example, tummy pain leading to reduced demands and emotion-regulation work).

If the system pushes people into more generic, shared or unstable supports, it increases the risk of:

behaviour escalation and self-harm
police involvement or restrictive responses
emergency mental health presentations
greater long-term cost to government. Example D: Participation and contribution – the things that give life meaning

The NDIS is supposed to help people live an ordinary life and participate in community.

Community access is not an “extra” for Milli. It is where she practises the real-world skills that keep her safe, build independence, and prevent isolation and distress. Without funded support to access the community, Milli’s world shrinks back to home based survival.

Milli’s week includes therapy, daily exercise, and community participation that builds skills and belonging.

One concrete example is her volunteering as a Starlight Captain at the Children’s Hospital, spending time with sick kids playing her ukulele for them and singing. This is not just a “nice extra”. It builds identity, communication, conﬁdence, and social connection. It is one of the clearest ways Milli contributes to the community and develops a sense of purpose. Milli is motivated and proud to have this valued role in her community. It improves her social skills and mental health and keeps her active and mobile.

Milli has an amazing, hand-picked team of professionals who are committed to her wellbeing and growth. They are not just “sitting on their phones”. They provide active, skilled support so Milli can do essential activities that most adults take for granted, including:

shopping for groceries, using a shopping list, sticking to a budget, and paying at the checkout with her card

getting to medical appointments and therapy, and following the recommended programs, medicine adjustments and diets
learning to navigate the neighbourhood and drive her powered wheelchair safely in real places (paths, kerbs, road crossings and shops).
joining social activities — like Boccia, which is one of the only times in her week to meet other people and practise social skills
building vocational skills — as a musician (ﬁnding places to perform, getting there, setting up equipment, and communicating with organisers).

If funding for participation and contribution is cut or narrowed, the outcome is not “people do less fun stuff”. It is:

people become isolated
anxiety and behaviour issues increase
family members burn out
reliance on crisis services increases.

Impact on our informal supports (me and Milli’s sibling) NDIS supports do not replace family. They keep families functioning.

I work full time and I have my own physical health challenges due to the physical and time demands of managing Milli’s complex disability. Milli also has a sibling with mental and physical health challenges. If supports are reduced, the “gap” does not disappear. It lands on the family.

That means:

more missed work and reduced income (and reduced capacity to keep paying my mortgage, tax and other essentials)
higher stress and worsening health for me
less time to support the educational and care needs of Milli’s sister
increased risk that the family can no longer sustain care at home. When families can’t sustain it, the alternative is not “doing without”. The alternative is:
hospital admissions
emergency accommodation

entry into other government-funded services that cost more and deliver less personalised care.

What I want the Committee to recommend I ask the Committee to recommend that the Bill is not passed unless it is amended to:
Protect individualised, practical supports for people with severe and complex disability.
Safeguard participants, which includes their choice and control over who delivers their supports and how.
Keep support coordinator roles separate from the NDIS to ensure they can continue to advocate for the right support for participants
Ensure any functional capacity assessments and reassessments are fair, evidence-based, and do not reduce supports simply because a person can perform a task once in an artiﬁcial setting.
Keep clear, accessible review and appeal rights when decisions reduce supports.
Block the minister from having unscrutinised control to reduce funding categories.
Ensure “sustainability” does not mean shifting cost from the NDIS onto hospitals, emergency services or informal carers.

Thank you for the opportunity to make this submission.