Submission 915
Submission to the Senate Community Affairs Legislation
Committee
National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026
Submitted by: Parent and full-time carer of an NDIS participant
Introduction
I am writing as the parent and primary carer of a child who participates in the NDIS. I am also neurodivergent myself.
My experience has been that almost every meaningful support has had to be fought for, repeatedly explained, evidenced and escalated before being accepted. Some supports were only implemented after approximately 10 months in the Administrative Review Tribunal process, which remains ongoing.
That process has been exhausting, frustrating and unnecessarily adversarial. Families should not have to enter prolonged legal and review processes simply to access practical disability supports that are already supported by evidence.
I am making this submission because my experience shows the real-world consequences of restrictive NDIS decision-making. Further narrowing of the Scheme risks making an already difficult system even harder for disabled children, carers and neurodivergent parents to navigate.
Concerns Regarding Restrictive Interpretation of Support Needs
One of the most significant concerns I have is the increasingly narrow interpretation of what constitutes a disability-related support need.
In practice, families are already experiencing situations where:
-
practical daily support needs are dismissed as “ordinary parenting”
-
school attendance is treated as reducing support requirements outside school hours
-
therapy funding is treated as sufficient without considering whether strategies can realistically be implemented in daily life
Page 1 of 6
Submission 915
- carers are expected to absorb unsustainable levels of supervision, prompting, co-regulation, administration and emotional labour without recognition
The proposed amendments increase concern that these interpretations may become more deeply embedded within the Scheme.
There is a significant difference between:
-
providing occasional age-appropriate parenting support and
-
providing constant high-frequency prompting, supervision, emotional regulation support, transition management and functional assistance throughout daily life.
The intensity, duration and frequency of support required for some children substantially exceeds ordinary parental expectations.
This distinction is critical and must not be lost through restrictive policy interpretation or cost-driven decision making.
Therapy Alone Is Not Enough
A major issue within the current system is the assumption that therapy alone is sufficient.
Therapy recommendations cannot implement themselves.
Many children require practical implementation support in real-world environments in order for therapeutic strategies to succeed.
Without practical support:
- therapy goals often fail to generalise into daily functioning
- emotional regulation deteriorates
- family stress escalates
- community participation decreases
- parents experience burnout attempting to implement complex supports alone
There appears to be an increasing tendency to fund assessment and recommendations while resisting the practical supports required to carry those recommendations into everyday life.
Page 2 of 6
Submission 915
This creates a system where families receive reports and strategies on paper, but insufficient support to make those strategies functional in reality.
The long-term result is often escalation, crisis, carer exhaustion and increased system costs.
School Attendance Does Not Eliminate Support Needs
Another serious issue is the assumption that school attendance significantly reduces care burden.
School is a formal education setting. It is not respite.
Children with significant functional needs often require the highest levels of support:
-
before school
-
after school
-
during transitions
-
in evenings
-
on weekends
-
during school holidays For many carers, school hours are not periods of rest. They are often consumed by:
-
therapy coordination
-
NDIS administration
-
school communication
-
behaviour management planning
-
appointments
-
advocacy
-
legal processes
-
complaint processes
-
documentation requirements The cumulative administrative burden placed on carers within the current system is enormous and frequently overlooked in planning decisions.
Page 3 of 6
Submission 915
This burden is even more significant for neurodivergent carers attempting to navigate complex systems, repeated evidentiary requirements, adversarial review processes and ongoing administrative demands while simultaneously managing disability-related support needs within the home.
Future legislation should ensure that school attendance alone is not treated as evidence that broader support needs are reduced or adequately addressed.
Overreliance on Informal Supports
I am also concerned about increasing reliance on assumptions regarding informal supports.
Many families do not have reliable extended family assistance, financial flexibility or consistent co-parenting arrangements.
Even where some informal support exists, it may be:
- inconsistent
- limited
- unstable
- unsuitable for managing disability-related functional needs Assuming that carers can continue indefinitely absorbing escalating levels of support without consequence is neither sustainable nor safe.
The current approach risks pushing families to crisis point before adequate support is recognised.
Preventative and practical supports are often more cost effective than crisis responses, family breakdown, mental health deterioration or placement instability later.
In my own experience, practical supports recommended by professionals were disputed for approximately 10 months through review processes despite significant evidence regarding functional impacts and daily support needs. During this period, the burden of implementing and coordinating supports fell almost entirely onto me as the primary carer.
Risks of Further Restrictive Reform
Page 4 of 6
Submission 915
If the Scheme continues moving toward narrower interpretations of disability related supports, there is a real risk that:
-
children with significant functional impairments will lose access to meaningful participation supports
-
carers will experience worsening burnout
-
therapy outcomes will decline due to lack of implementation capacity
-
families will disengage from supports due to exhaustion and complexity
-
greater pressure will shift onto already strained education and health systems
There is also a risk that families will become increasingly forced into adversarial review processes simply to secure basic functional support.
This is emotionally, financially and administratively damaging for participants, carers and the Scheme itself.
Recommendations
I respectfully recommend that the Committee consider safeguards to ensure that future reforms do not further restrict access to practical disability-related supports.
In particular:
-
Ensure that practical implementation supports remain recognised as legitimate disability-related supports where linked to functional impairment.
-
Prevent the inappropriate classification of high-intensity disability-related support needs as merely “ordinary parenting”.
-
Ensure school attendance is not treated as equivalent to respite or evidence that broader support needs are reduced.
-
Require proper consideration of cumulative carer burden, including administrative and coordination responsibilities.
-
Recognise that therapy recommendations alone are insufficient without practical capacity for implementation.
-
Ensure informal support assumptions are realistic, evidence-based and sustainable.
Page 5 of 6
Submission 915
- Prioritise early and preventative supports to reduce escalation and long- term system costs.
Conclusion
The future sustainability of the NDIS is important.
However, sustainability cannot be achieved by narrowing supports to the point that families are left carrying unsafe and unsustainable burdens without adequate assistance.
The Scheme should remain focused on functional reality, not merely theoretical models of support.
Children with disability and their carers deserve systems that recognise the practical realities of daily life, not systems that minimise those realities through restrictive interpretation.
I urge the Committee to carefully consider the real-world consequences these reforms may have on participants and families already struggling to access appropriate supports under the current framework.
Page 6 of 6