Dear Joint Standing Committee on the NDIS,
I am writing as an NDIS participant, the sole parent of multiple children with significant support needs, and the parent and nominee of a young NDIS participant with complex and high-intensity disability support needs.
Following the passage of the recent NDIS legislation, I am asking the Committee to closely scrutinize the Rules, assessment processes and implementation arrangements that will now determine how these legislative changes operate in people’s actual lives.
I support the need for a sustainable NDIS. My child may require this system long after I am gone, so its long-term survival matters enormously to me.
What concerns me is the possibility of achieving apparent sustainability by systematically underestimating functional need, overestimating unpaid family capacity, replacing individualised human judgement with opaque assessment–to–budget mechanisms, or dismantling effective support relationships.
I have already provided detailed feedback to the Department of Health, Disability and Ageing and the Independent Advisory Council. I am writing separately to the Committee because I believe these reforms require sustained parliamentary scrutiny as they are developed and implemented.
There are five areas I particularly ask the Committee to scrutinise:
- Whether standardised assessments accurately capture functional reality
A person’s presentation during an assessment is not necessarily an accurate representation of their functional capacity across environments and over time.
A person can appear regulated for an hour and require extraordinary support for the remaining 167 hours of that week.
My child can be intelligent, articulate and engaging whilst regulated and supported, while at other times experiencing profound dysregulation, serious safety risks and substantial dependence on adults for basic daily functioning.
Annual Report No. 2 of the 48th Parliament
Submission 32
I am also highly articulate and capable of discussing disability policy, executive functioning and functional capacity in considerable detail.
I am nevertheless disabled and require substantial support with ordinary daily functioning.
The following are assertions about capability:
- Intelligence is not capacity.
- Insight is not capacity.
- Articulation is not capacity.
I ask the Committee to scrutinise whether longitudinal evidence from treating professionals can genuinely influence or override an assessment snapshot where the two conflict, and whether the assessment system appropriately captures masking, fluctuating function, environmental differences, existing supports and difficult days rather than simply performance during assessment.
Whether unpaid family support is being presumed rather than genuinely assessed
Having family does not mean having available informal support.
I am my child’s sole parent and primary informal support. I am also disabled, an NDIS participant myself, responsible for multiple children with significant needs, and have no informal support available to me.
For periods of time, the gap between what my child required and what was formally available was effectively being paid for with my physical health, psychological health, my other children’s wellbeing and the stability of our household.
That was not evidence of adequate informal support.
It was evidence of an exhausted family compensating for unmet disability support need in circumstances that were neither safe nor sustainable.
Submission 32
I ask the Committee to scrutinise whether the new Rules require the availability, willingness, functional capacity and sustainability of informal support to actually be established rather than inferred from family relationship or co-residence.
3. Whether Participants Can Obtain Urgent Intervention Before Crisis Becomes Catastrophe
My family has recently experienced an escalation involving police, ambulance transport, hospital admission, hospital security, multidisciplinary clinical intervention and urgent NDIS reassessment.
eventually the different systems came together, the evidence was considered and a substantially different level of disability support was approved.
i am enormously grateful for that outcome.
a disability system should not require a family to reach catastrophic crisis before it becomes capable of responding proportionately.
i ask the Committee to scrutinise whether the new Rules provide a genuinely expedited pathway where there is escalating risk, hospitalisation, carer injury or collapse, loss of education, imminent family breakdown, housing instability, substantial deterioration in function or evidence that existing supports can no longer safely meet disability-related needs.
alternatively costs do not disappear.
they simply move to hospitals, schools, police, child protection, housing systems and families — usually after considerably more human harm has occurred.
4. Whether The Assessment-to-Budget Process Is Genuinely Transparent And Challengeable
If assessment tools, formulas, weightings, algorithms or automated systems contribute to determining support needs or budgets, participants should be able to understand how.
there should be a visible pathway from:
5. What Happens To Independent Support Coordination
effective independent support coordination has been fundamental to my family’s survival and more recently, our movement toward stability.
our support coordinator does not simply make referrals.
she holds years of knowledge about our family and disability needs, coordinates across health, disability, behavior, education and community systems, participates in multi-disciplinary processes, advocates when my disability prevents me from doing so effectively myself identifies appropriate providers and maintains continuity across an extraordinary complex support environment.
that relationship took years to build.
i cannot continually rebuild it.
i do not have another reserve of energy waiting somewhere for the next system redesign.
Submission 32
For participants whose disabilities affect executive functioning, communication, trust, information processing or the capacity to repeatedly recount complex histories, relational continuity can itself be an accessibility requirement.
Please do not confuse interchangeability of a service category with interchangeability of human relationships.
I ask the Committee to closely scrutinize any replacement or reform of Support Coordination, potentially whether it preserves:
- participant choice;
- continuity of established relationships;
- genuinely independent advocacy;
- complex-case expertise;
- freedom from conflicts of interest;
- participant choice of provider;
- and transition protections for people who already have effective support arrangements.
I am not opposed to reform.
I am opposed to reforms that measure success through expenditure reduction while the resulting human and financial costs simply migrate elsewhere.
The NDIS should be sustainable because it identifies disability-related need accurately, intervenes intelligently and prevents avoidable crisis — not because disabled people and families quietly absorb whatever the system no longer funds.
I respectfully request that the committee maintain active scrutiny of these issues as new Rules, support needs assessments, budget methodology, and future support coordination models are developed and implemented.
Willingly welcome information about how the committee intends to examine those changes & participants/families can continue providing lived experience evidence during implementation.
Submission
Kind regards,
Western Australia
NDIS participant, parent and representative of NDIS child participant