Submission 1440

Submission to the Senate Community Affairs Committee

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

My name is and I am the mother and primary carer of my daughter, .

I am writing this submission because I am strongly oppose the proposed changes to the NDIS and in their current form, how they may affect children like and families like ours.

   is a 10-year-old child diagnosed with Autism Spectrum Disorder Level 3 and ADHD. She has significant difficulties with emotional regulation, rigidity, sensory processing,

communication, executive functioning, adaptive functioning and school participation.

While can sometimes appear capable or intelligent in structured environments, this does not reflect the reality of her daily functioning, the level of support she requires, or the impact her disabilities have on her ability to safely and consistently participate in everyday life.

The proposed reforms fail to understand the difference between:

• what a child can occasionally achieve in highly supported situations
• and what they can sustainably manage in real life without extensive support.

Functional Capacity and “Substantially Reduced” Criteria

I strongly oppose the proposed requirement that participants must demonstrate “substantially reduced functional capacity” in order to access or remain eligible for the NDIS.

Children like often only appear more functional because of the supports, accommodations and therapies they currently receive.

  ’s ability to attend school, regulate emotionally, participate socially and complete daily activities depends heavily on:

• extensive school adjustments
• intensive, regular and consistent therapy intervention
• visual supports
• emotional co-regulation
• highly flexible environments
• significant parental involvement

Submission 1440

Without these supports, her functioning deteriorates significantly.

The concern I have is that children who have made progress because of years of therapy and support may now be viewed as “not disabled enough” because they can partially participate in some environments.

This creates a dangerous situation where the very supports that helped a child function become the reason their supports are reduced.

I am also extremely concerned that the NDIA, rather than treating allied health professionals who know the child best, will ultimately hold the decision-making power regarding functional capacity and funding.

  ’s therapists, psychologist and treating professionals understand the complexity of her

presentation far better than a standardised NDIA assessment process ever could.

Standardised Assessments and „One Size Fits All“ Funding

I strongly appose proposals for more standardised assessment models and funding decisions.

  ’s needs are highly individualised and cannot be accurately captured through simplified or

comparative assessment systems.

Although ’s cognitive testing now falls within the average range in some areas (thanks to her NDIS funded supports she has received consistently on a fortnightly basis for the last 5 years) she still experiences profound difficulty functioning within real-world environments due to emotional dysregulation, rigidity, sensory overwhelm and executive functioning deficits.

This is a child who:

• requires extensive adjustments at school
• regularly disengages from tasks
• struggles with transitions and unpredictability
• experiences severe burnout
• absconds when overwhelmed
• requires significant adult support and co-regulation
• can become incapable of functioning when stressed

A recent speech pathology assessment specifically documented that she required multiple preparation sessions, social stories, visual supports, extensive reassurance, breaks and co- regulation support simply to complete standardised assessments. The assessment process took approximately twice the normal timeframe.

This demonstrates exactly why standardised “one size fits all” assessments are dangerous for children with neurodevelopmental disabilities.

Submission 1440

Children like redacted cannot be accurately assessed without considering:

• environmental supports
• regulation requirements
• flexibility needs
• support scaffolding
• behavioural presentation under stress
• the enormous amount of unseen support provided by families

There is a major difference between: “Can this child do the task?” and “Can this child consistently and safely function without substantial support?”

School Participation and Educational Impact

One of the hardest areas of our lives is school.

redacted experiences ongoing and significant difficulties participating within the school environment despite extensive accommodations and support.

There are regular school meetings, frequent communication with staff and ongoing intervention to try and maintain redacteds engagement in education.

Some days redacted cannot attend school at all because she is too overwhelmed or dysregulated.

There are regular occasions where I am required to pick her up early because she becomes unable to cope safely within the classroom environment.

By around Week 7 of most school terms, redacted is frequently highly dysregulated and burnt out from the demands of school.

She currently requires extensive accommodations including:

• reduced workload expectations
• sitting separately from peers
• frequent movement and regulation breaks
• access to a sensory pod
• flexible eating arrangements
• emotional regulation accommodations
• significant flexibility around participation expectations

Even with these supports in place, school participation remains fragile.

I am deeply concerned that increasingly rigid funding systems and standardised approaches will fail to recognise the amount of support required simply to keep children like redacted marginally engaged in education.

Submission 1440

Plan Reassessments and Change in Circumstances

I strongly oppose proposed restrictions around plan reassessments and change in circumstance requests.

Children like do not have static support needs.

Her functioning fluctuates significantly depending on:

• stress
• school demands
• sensory overload
• burnout
• transitions
• emotional regulation
• sleep
• social conflict

The proposal that reassessments may only occur in limited circumstances creates enormous risk for children with dynamic and fluctuating support needs.

The proposed 90-day timeframe for reassessment decisions is also extremely concerning.

Three months is an extraordinarily long time when a child is:

• highly dysregulated
• unable to engage in school
• deteriorating emotionally
• unsafe
• experiencing escalating burnout
• placing increasing pressure on the family system

Children can deteriorate rapidly when supports are not responsive to changing needs.

Families should not have to wait until complete crisis before additional support is considered.

I also strongly oppose the proposal that only participants or nominees may be able to submit reassessment requests.

Removing the ability for intermediaries like Support Coordinators to submit reassessments on participants and families behalf creates another barrier for already overwhelmed families and creates substantial risk of essential information and evidence being missed because the complexities of the NDIS, it’s navigation, standards and practices require skilled professional oversight.

Submission 1440

Ministerial Powers and Funding Control

I strongly oppose proposals expanding ministerial powers over participant funding, eligibility and budget decisions.

The idea that participant budgets and access may potentially be reduced, reset or changed through broad ministerial powers creates enormous uncertainty for families caring for children with lifelong disabilities and is a breach of human rights.

We cannot safely plan for our children’s futures if supports can potentially change at any stage without clear safeguards and transparency. Families and the disabled community need consistency, stability and safety. We already live on the edge of anxiety and fear, navigating other complexities, the last thing we need is the constant fear that essential supports can be ripped away at any moment by someone who doesn’t know my child, doesn’t see our day-to-day life and the impact her disability has on our family as a whole.

Plan Suspensions and Loss of Access

I strongly oppose the proposed plan suspension provisions.

The proposal appears to allow plans to be suspended if the NDIA believes “reasonable attempts” have been made to contact participants, yet there is no clear definition of what this means.

This does not reflect the reality of caring for children with disability.

Families like ours are already juggling:

• school crises
• therapy appointments
• emotional dysregulation
• sleep difficulties
• medical appointments
• constant communication with services
• burnout and exhaustion

Missing an email, phone call or letter should not place a disabled child at risk of losing supports.

What happens if:

• a parent is overwhelmed
• contact details change
• a child is in crisis
• emails are missed
• the family is dealing with hospitalisation or burnout

Submission 1440

Children like should not lose access to essential supports because a family failed to respond within an arbitrary timeframe.

Mainstream Supports and Cost Shifting

I strongly oppose proposals suggesting participants should only access the NDIS once all other treatments and systems have been exhausted.

The reality is that mainstream systems are already overwhelmed and often unable to adequately support children with complex neurodevelopmental disabilities.

Schools are struggling. Mental health systems are overloaded. Public therapy waitlists are extensive. Families are burning out.

As a parent, I already spend enormous amounts of time:

• advocating within schools
• attending meetings
• sourcing services
• managing dysregulation
• coordinating appointments
• supporting emotional regulation after school
• preventing complete breakdown in functioning

The proposed reforms appear likely to increase pressure on families while reducing access to meaningful disability support.

Additionally, there is no “treatment” for neurodevelopmental disabilities. The only proven effective “treatment” for ’s Autism has been the consistent, intensive fortnightly therapy support she has received over the last 5 years.

Lastly, just because she has received fortnightly therapy over the last 5 years, doesn’t mean it can reduce or cease. She has made progress and achieved outcomes, however, the goals change as she grows and gets older, therapeutic intervention becomes less about physical “learn to do’s” and more about social and emotional complexities, life skill development, navigating relationships, recognising body cues and capacity. The need doesn’t stop, the goal posts just shift.

Fraud Measures and Privacy Concerns

While I agree fraud within the NDIS should be addressed, I am concerned that some proposed compliance measures risk unfairly targeting genuine participants and families. This is already being seen and experienced by the disabled community.

Submission 1440

The proposal for expanded NDIA access to personal information, banking information and risk assessments feels highly intrusive and breaches privacy laws. It’s a proposal I strongly oppose.

Families caring for children with disability are already under constant scrutiny and administrative pressure. We already have to expose so much of our private lives to the NDIA during each plan reassessment or check in meeting. We should not have to expose anymore.

Participants and families should not be treated like suspected criminals because they rely on disability support.

Plan Management and Participant Choice

I strongly oppose proposals limiting participants to government-commissioned panels of plan managers.

Many families intentionally choose smaller plan management providers because they provide:

• personalised support
• flexibility
• responsiveness
• understanding of complex disability

Removing participant choice undermines one of the core principles the NDIS was built upon. Whilst I agree there needs to be tighter oversight on plan management providers, many of the large, corporate plan managers use AI automated systems with no human oversight.

Support Coordination and the Navigator Model

I strongly oppose the proposal to remove Support Coordination as an individually funded support and replace it with a generic navigator model.

Families like ours do not need short-term generic advice.

We need ongoing professional support from people who:

• understand our child
• understand our family
• understand school-based disability challenges
• coordinate multiple systems
• support communication between services
• help prevent family breakdown and mitigate risk

A generic “call centre” style navigation approach will not meet the needs of children with complex presentations.

Submission 1440

Final Comments

   is not a statistic, a budget line or a standardised profile.

She is a child with complex needs who requires significant support to participate safely in everyday life.

She is affectionate, creative and caring, but she is also a child who:

• becomes overwhelmed easily
• struggles to cope with everyday demands
• experiences severe dysregulation
• relies heavily on accommodations and supports
• has fragile school participation
• requires substantial parental and professional support

Families like ours are already exhausted.

We are already fighting constantly to access appropriate supports, maintain school engagement and prevent crisis.

I urge the Committee to carefully consider the real-world consequences these reforms have on children with neurodevelopmental disabilities and their families.

I ask the Committee to:

• preserve individualised assessments
• avoid rigid standardised funding systems
• maintain flexible reassessment pathways
• preserve participant choice and control
• protect Support Coordination
• strengthen safeguards around plan suspensions
• ensure disability is assessed in the context of support needs, not isolated performance
• prevent further cost shifting onto schools and families

Children like deserve safety, dignity, support and the opportunity to participate meaningfully in life.

Thank you for considering my submission.

Regards,