My name is and I am the mother and primary carer of my daughter, **who is an NDIS participant.

I am writing this submission because I am deeply concerned about the proposed changes to the NDIS and the devastating impact they may have on children like my daughter who live with profound and complex disabilities.

is entirely dependent on adults for her care, supervision, communication

support, emotional regulation and safety. She has significant functional impairments across all areas of daily life and cannot advocate for herself. Every support around her has been built over years of evidence, crisis management, assessments and system navigation.

I do not believe the proposed Bill properly considers the reality faced by families caring for children with profound disabilities and extremely high support needs.

Functional Capacity and Access Concerns

’s safety, participation and quality of life rely entirely on intensive support systems

around her. Without those supports, her functioning would significantly deteriorate.

The proposed changes appear to place greater decision-making power into the hands of the NDIA rather than the treating allied health professionals and specialists who know participants best.

As a parent, this is frightening.

The people who truly understand my daughter’s needs are the professionals who work with her consistently and the family who care for her every day. I do not believe standardised NDIA assessments can accurately capture the complexity of children like .

Standardised Assessments and “One Size Fits All” Approaches

I am deeply concerned about proposals for more standardised and generalised assessments.

Children with profound disabilities are not interchangeable.

’s support needs cannot be accurately represented through simplified “yes/no"

stype assessments or comparisons against other participants with similar diagnoses.

Disability does not present the same way in every person.

’s communication needs, behaviours, emotional regulation difficulties, safety

risks and daily support requirements are highly individualised.

A standardised assessment process risks overlooking the nuance and complexity of participants with severe disability and could result in dangerous underfunding.

There is a major difference between:

• what a child can technically do in ideal circumstances
• and what they can safely and consistently do in real life without intensive support.

Families like ours constantly provide the “yes, but not without support” context that standardised systems fail to capture.

Plan Reassessments and Change in Circumstances

I am also extremely concerned about the tightening of plan reassessment and change in circumstance rules.

The proposed requirement that changes must be “significant and ongoing” creates serious risks for participants with escalating support needs.

Children with profound disabilities can deteriorate rapidly or experience sudden increases in behavioural, emotional, medical or safety-related support needs.

Waiting up to 90 days for decisions could place participants like at significant isk, it could be a life or death wait.

Three months is an extraordinarily long time when a child is already in crisis, unsafe, hospitalised, or when a family is already at breaking point.

Delays in support can lead to:

• increased hospitalisations
• family burnout
• mental health crises
• unsafe care arrangements
• breakdown of placements and informal supports

I am also deeply concerned that only participants or nominees may be able to submit reassessment requests.

Many families rely heavily on Support Coordinators to navigate the complexity of the NDIS system, gather evidence, communicate with professionals and advocate effectively.

Removing this ability creates yet another barrier for overwhelmed families already under enormous pressure.

Ministerial Powers and Funding Control

I am deeply uncomfortable with the proposed expansion of ministerial powers over participant funding and access.

The idea that funding levels, access decisions and participant budgets could potentially be altered, reduced or reset through broad ministerial powers creates enormous uncertainty for families already living with significant instability and stress.

Families caring for children with profound disabilities need consistency and security.

We cannot safely plan for our children’s future if supports can potentially be reduced or changed without adequate safeguards and transparency.

Plan Suspensions and Loss of Access

The proposed plan suspension provisions are also extremely concerning.

The Bill appears to allow the NDIA to suspend plans after “reasonable attempts” to call participants, yet there is no clear definition of what constitutes “reasonable”.

This does not reflect the reality of disability and caring responsibilities.

Families like ours are often:

• attending hospital appointments

• managing crises

• caring for children around the clock

• dealing with exhaustion and burnout

• navigating complex service systems

Missing a phone call, email or letter should not place a profoundly disabled child at risk of losing access to essential supports.

What happens if a family:

• is in hospital

• changes phone numbers

• misses correspondence

• is overwhelmed by crisis

• has limited capacity to respond immediately

For participants like , losing supports even temporarily could have catastrophic consequences.

“Mainstream Supports” and Other Systems

I am also deeply concerned about the increasing expectation that families access “mainstream” systems before receiving NDIS support.

In reality, these services are often:

• unavailable

• inaccessible

• financially unaffordable

• unsuitable for complex disability

• overwhelmed with long waitlists

Families are already constantly pushed between systems that each attempt to shift responsibility elsewhere.

Hospitals say it is an NDIS issue. NDIS says it is a health issue. Schools say it falls outside education responsibilities.

Meanwhile, parents are left trying to fill impossible gaps.

The proposed reforms appear to increase this cost-shifting rather than resolve it.

Children like require highly specialised, disability-informed support from people who understand her communication needs, behaviours, regulation difficulties and safety risks.

Mainstream systems are simply not equipped to replace this level of support.

Fraud Measures and Privacy Concerns

I understand the need to address fraud within the NDIS.

However, I am concerned that some proposed fraud and compliance measures may disproportionately impact genuine participants and families.

The proposal for expanded NDIA powers to access personal information, banking information and conduct broad “risk assessments” feels extremely intrusive.

Families caring for profoundly disabled children are already under constant scrutiny and administrative pressure.

There is also concern about proposals requiring extensive record retention, with the risk of participants being required to repay funds even where legitimate supports were delivered.

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

Plan Management and Participant Choice

I am also concerned about proposals limiting plan management providers to government-commissioned panels.

Participant choice and control is supposed to be a foundational principle of the NDIS.

Many families intentionally choose smaller plan management providers because they offer personalised support, responsiveness and understanding of complex needs.

Reducing choice risks forcing participants into inflexible systems that do not understand their circumstances.

Support Coordination and the Proposed Navigator Model

One of my greatest concerns is the proposal to remove Support Coordination as an individually funded support and replace it with a centralised “Navigator” style model.

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

We need consistent people who:

• understand our child
• understand our risks
• know our history
• coordinate multiple systems
• mitigate and manage crises
• communicate with professionals
• help prevent breakdowns in care
• protect our child against fraud
• manage funding expenditure
• flag concerns in invoices and budget utilisation
• facilitate care team meetings

Support Coordination has been essential in helping our family navigate an incredibly complicated and overwhelming system and ensuring ’s funded supports are representative of her needs. Without our Support Coordinator, my family would have had no choice but to relinquish care of . We were at a critical point of disaster and breakdown before our current Support Coordinator joined the team and she has and continues to be an essential asset to ’s care team. would not have the skilled allied health professionals she has, the direct support team she as, the assistive

Final Comments

is not a budget line or a funding statistic.

She is a profoundly vulnerable child who depends entirely on the people and systems around her to ensure her safety, dignity and wellbeing.

Families caring for children like redacted are already exhausted.

We are already fighting every day to access appropriate supports, coordinate fragmented systems and keep our children safe.

The NDIS system is already hard enough to access and get support for, the proposed changes will only create additional and unmanageable burden and stress on families.

Children like redacted deserve stability, dignity, safety and access to the supports they need to participate in life as fully as possible.

I strongly oppose the proposed reforms and believe they will recklessly endanger the disabled community and their families