Submission 1515

Submission: NDIS Future Generations Bill 2026

Tuesday 26 May 2026

to the Community Affairs Legislation Committee,

I am writing as the mother and full-time carer of my daughter (Miss 11), who is an NDIS participant. (Miss 11) is autistic (Level 2 support needs), has ADHD, dysgraphia, dyspraxia, sensory challenges, encopresis, and significant difficulties with interoception and regulation. These are common co-morbidities with Autism. Many of her disabilities are “hidden disabilities”, but they have an enormous impact on our daily functioning and on our two-person neurodiverse household.

I am deeply concerned about aspects of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026, particularly proposed reductions to capacity building and participation supports, increased use of automation and standardised decision-making, restrictions on reassessment flexibility, and the expansion of powers to reduce supports across categories.

I have been personally exposed to gross misuse of NDIS funds amounting to hundreds of thousands of dollars, and it is deeply distressing to see families of autistic children — who often receive comparatively modest budgets despite very high daily support needs — facing increasing restrictions and reduced flexibility while obvious large-scale misuse appears to continue unchecked elsewhere in the system.

I personally worked with an adult participant who exhausted a $250,000 NDIS budget within a few months, including through arrangements where workers allegedly “did deals” with him involving inflated invoices and cash or goods being returned to him. Despite

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concerns being raised, including my own complaints about the misuse and suggestions for

tighter safeguards such as staged or managed funding release, the participant was

reportedly granted a further $250,000 allocation without meaningful protections being

implemented.

Experiences like this make it extremely difficult to accept proposals that reduce supports

and flexibility for families like mine, where budgets are modest and every hour of therapy

and every practical support item is carefully stretched to improve a child’s long-term

functioning, independence and wellbeing.

The answer to fraud and misuse is not to make life harder for autistic children, rural

families, carers, or participants with legitimate complex needs. The answer is better

oversight of high-risk cases while preserving flexible, individualised supports for

participants who are genuinely benefiting from them.

My concern is that these reforms move further away from individualised support and

professional clinical judgement, and closer to rigid systems that do not reflect the reality of

people with complex and fluctuating disabilities.

(Miss 11)’s needs cannot be accurately captured through “tick box” assessments.

For example, autism often demands routine and predictability, yet our household struggles

to maintain routine because (Miss 11)’s encopresis can occur unpredictably, and sensory

challenges can dramatically affect her regulation, energy, communication and participation

from one moment to the next. Something as simple as a meal may take 60 seconds one day

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and over half an hour the next. (Miss 11) is also often non-verbal and relies heavily on

audiobooks, videos and screen-based supports for regulation and communication.

I also home educate (Miss 11), which allows her education to be tailored around her

disabilities, sensory needs, regulation challenges and fluctuating capacity. This flexible

approach has been essential in supporting her engagement, wellbeing and long-term

development in a way that standard educational environments would likely struggle to

accommodate safely and consistently.

However, the sustainability of home education in our circumstances depends heavily on

appropriate therapeutic supports, professional guidance, flexibility within the NDIS, and

the prevention of carer burnout.

When families are adequately supported, they are often able to create stable, lower-crisis

environments that improve long-term outcomes not only for the disabled person, but also

for the broader community and public systems. Supporting families early and effectively

can reduce future pressure on health, mental health, education and crisis support systems

while increasing the likelihood of meaningful participation and contribution over time.

One of the most effective interventions (Miss 11) has ever accessed was hydrotherapy. It

improved her overall functioning more than any other support we have tried. I believe this

was partly due to improved core strength, which gave (Miss 11) a greater sense of stability

in her body. This had flow-on effects into focus, emotional regulation, mood, participation

and her ability to engage in written tasks.

Importantly, hydrotherapy was one of the only supports (Miss 11) consistently engaged

with willingly. It is also one of the most difficult supports to secure funding for through

NDIS.

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Unfortunately, we lost access to this therapy when the provider relocated interstate. Since

teen, I have personally self-funded weekly active pool play sessions an hour away with

another neurodivergent child because I know how important this intervention is for (Miss

11)'s wellbeing and functioning.

This is an example of why flexibility within the NDIS is so important, especially in rural areas

where services are limited and continuity of care is fragile.

We live approximately one hour from Launceston in regional Tasmania. Travel is extremely

tiring and overwhelming for both (Miss 11) and myself due to our neurodivergence, which

means many standard service models simply do not work for us. Over the years we have

lost multiple excellent professionals due to maternity leave, and there are very few

replacement services available locally. This has led to extended gaps in support provision.

As a result, we often rely on telehealth and online supports using my own paid Zoom

account. Occupational therapists and speech therapists have not only supported (Miss 11)

directly, but have also helped guide myself and (Miss 11)'s therapeutic assistants so we can

better support her day to day.

The advice and education from OT and Speech professionals have been critical to my

understanding of (Miss 11)'s strengths, limitations and support needs. Their input has

helped me adopt a strength-based mindset rather than constantly trying to force (Miss 11)

into approaches that are unrealistic or distressing for her. There is no one size fits all

approach to working with these hidden disabilities.

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These supports have also been essential for my own wellbeing as a carer.

Without professional guidance, many parents are left carrying enormous stress while trying

to navigate complex disabilities with little practical understanding from systems around

them.

I am also deeply concerned about the inconsistency and lack of expertise among some

NDIS assessors.

At redacted’s last review, her functional assessments suggested a higher level of need.

Rather than designing supports based on those assessments and the recommendations of

qualified professionals, I was instead required to obtain a new autism assessment. This

assessment confirmed a higher level diagnosis, which was not surprising given redacted’s

increasing age and the widening gap between her functional abilities and same-age peers.

At another review, the assessor disclosed that they had a brother with autism and

appeared to approach our assessment with significant personal bias. They positioned

themselves as an expert despite not listening properly to either me or redacted’s

professional team. They encouraged support arrangements that would have created

greater burden and stress for both redacted and myself, rather than reducing disability- related barriers.

In my experience, outcomes depend far too heavily on the individual assessor assigned to a

family.

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I am concerned that many assessors do not appear to have qualifications comparable to

occupational therapists or other allied health professionals, yet they often override or

disregard the recommendations of clinicians who know the participant well.

This is one reason I am extremely concerned about increased automation and standardised

decision-making under this Bill.

I recently experienced how poorly systems can understand (Miss 11)’s actual needs when trying to access a larger iPad for her. (Miss 11) experiences dysgraphia, visual-motor

difficulties, discomfort with handwriting and typing, and uses technology heavily for communication, learning and regulation, and is often non-verbal due to overwhelm. Larger screen space makes a significant difference to her ability to function independently and engage successfully.

Yet these needs are often poorly understood by systems focused on rigid categories rather than real-world functioning.

The financial impact of repeatedly self-funding necessary supports places ongoing strain on already vulnerable families.

At the same time, I have personally witnessed extraordinary waste and misuse of NDIS funding in other situations, including an adult participant receiving hundreds of thousands of dollars in unmanaged funds despite obvious misuse and exploitation by workers.

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It is deeply distressing to see genuine families struggling to access low-cost practical supports that genuinely improve independence and wellbeing while enormous amounts of funding are wasted elsewhere.

For example, we were once told that the NDIS would not fund a basic Alexa device because it was considered a “household item”. However, for (Miss 11), Alexa significantly improved independence and privacy by guiding her through toileting and clean-up routines related to encopresis in a way she tolerated far better than direct prompting from me.

For higher income families, an Alexa may simply be a household convenience. For families living on carer payments, small practical supports like this can make an enormous difference but may still be financially out of reach.

This is why flexibility and genuine partnership with families matter.

I am also concerned about reforms that may make it harder to use trusted friends or known community members as support workers. Children with disabilities are often safest and most regulated with people they already know and trust. Many rural communities simply do not have a large workforce of formal disability workers available.

In the past I have used local older friends for respite supports, but increased administrative burdens and compliance requirements discourage many suitable people from participating.

Families should not be forced into institutional or unfamiliar support settings simply because systems do not value relational safety and practical realities.

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Finally, I want Parliament to understand the risk of carer burnout.

There have been periods where I have gone well over 12 months without a single night away from redacted. I have been offered carer retreats and wellbeing programs through Carer Gateway but have not been able to access suitable respite in order to attend them.

Families like ours are already stretched to capacity financially.

I also believe it is important for Parliament to understand that well-supported disabled people and carers are often able to contribute significantly back into their communities when appropriate supports are in place.

Despite the challenges redacted and I face as a neurodiverse rural household, I contribute extensively to my local community through volunteer and community-based work.

However, my ability to do this depends heavily on having enough stability, flexibility and support in place around redacted’s needs.

When supports are effective, individualised and sustainable, they do not just benefit the disabled person in isolation. They create ripple effects throughout families and communities. In our case, appropriate supports make it possible for me to continue contributing through volunteering, community participation in my aging community that would otherwise become unsustainable under the pressure of unmanaged disability- elated demands and carer burnout. In turn meeting my need to contribute supports my own emotional and mental health.

It makes economic and social sense for governments to support disabled people and carers to function as well as possible. Early intervention, therapy, practical supports and flexible

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funding arrangements help families remain connected to their communities, reduce crisis situations, reduce long-term burnout, and increase the capacity of participants and carers to contribute meaningfully to society.

By contrast, reducing supports may appear to save money in the short term, but often creates greater long-term costs through worsening mental health, carer exhaustion, social isolation, increased crisis presentations and loss of community participation.

The NDIS should not only be viewed through the lens of immediate budget reduction. It should also be understood as an investment in the long-term functioning, stability and contribution of disabled Australians and their families.

Reducing therapy supports, limiting flexibility, increasing automation, or making supports harder to access will not create better outcomes. It will simply shift more pressure onto disabled people and their families while reducing long-term wellbeing, participation and independence.

May I also be so bold as to suggest that there may be more effective ways to improve accountability within the NDIS while simultaneously reducing both misuse and administrative costs.

In my experience, enormous amounts of time, money and emotional energy are currently being spent on repeated reassessments, duplicated paperwork, inconsistent decision-making and adversarial processes that often fail to meaningfully improve participant outcomes.

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A more efficient system could involve standard funding categories being allocated based on detailed functional assessments completed by appropriately qualified allied health professionals, with budgets linked clearly to demonstrated functional needs.

Rather than requiring families to repeatedly defend and re-prove their circumstances to multiple non-specialist staff, participants and carers could be supported to develop straightforward plans outlining how funding will be used to achieve practical goals and improve long-term functioning.

Funding could also be released progressively throughout the year in higher-risk situations, rather than as unrestricted lump sums, helping reduce opportunities for misuse without penalising genuine families.

At plan review time, families could provide simple outcome-based reporting explaining what supports were used, what worked, what did not work, and what changes may be needed moving forward.

This approach could significantly reduce the need for excessive layers of bureaucracy, duplicated assessments, repeated disputes, and costly administrative intervention, while still allowing targeted audits and safeguards where genuine concerns exist.

Importantly, it would also shift the role of NDIS staff away from acting as judges over highly complex disabilities they may not fully understand, and more towards supporting families to build and communicate workable, accountable and effective support arrangements.

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Where concerning spending patterns or misuse are identified, additional oversight and administrative resources could then be directed specifically toward those high-risk cases rather than increasing rigidity and compliance burdens across the entire Scheme.

I believe most families caring for disabled children are doing their best under very difficult circumstances. Treating participants and carers as intelligent and collaborative partners not only preserves dignity, but is also likely to produce better long-term outcomes, stronger accountability, and a more financially sustainable NDIS overall.

I urge Parliament to:

• protect capacity building and participation supports
• ensure decisions remain individualised and clinically informed
• prevent over-reliance on automation and standardised assessments
• ensure allied health recommendations are properly respected
• preserve flexibility for rural and complex families
• support continuity of care and relationship-based supports
• protect access to trusted informal supports
• recognise the realities of hidden disabilities and fluctuating needs
• ensure families and carers are treated as knowledgeable partners in care

I also support Occupational Therapy Australia’s recommendations and the No OT, No NDIS campaign.

Thank you for considering my submission.