I am the Carer of a teenager child with profound Autism (non-verbal) with a Severe Intellectual Disability, who has been with the Scheme for over 10 years.
The Securing the NDIS for Future Generations Bill 2026 cannot go ahead without further consultation and consideration of the following:
- Autism has a big target on its back. The government has made no secret of its intention to remove a large contingent of participants with mild to moderate Autism from the Scheme.
Participants with severe or profound Autism are not being distinguished from those with mild or moderate Autism. I experienced this first-hand with my profoundly Autistic child who recently had life-threatening cuts to his funding – a participant that the NDIS was built for. His diagnosis on his NDIS profile states ‘Autism’ with no reference level.
Participants with Level 3 or severe or profound Autism or Autism with Intellectual Disability must be triaged and kept safe from arbitrary funding cuts, and protected from a risk of harm or death from poor decision making and their funding kept intact.
Participants with mild or moderate Autism must be provided with available, accessible and alternative services (to also ensure no risk of harm or death), before being transitioned from the Scheme.
Action: NDIA to identify and state diagnostic level of Autism for each participant on their participant profile. Triage people with Level 3 Autism and Autism with Intellectual Disability and keep them protected from arbitrary funding cuts (until such time as functional needs assessments are operational). Ensure safe transition of people with Level 1 and Level 2 Autism to available, accessible and alternative services.
- The NDIS is disintegrating from the inside. The pressure on NDIS Planners to arbitrarily reduce funding in participants’ plans, as a directive from the top down, must be enormous.
Participant’s rights are being breached and NDIS policies are not being fairly followed by NDIS planning delegates.
In the recent situation with my child’s plan reassessment, I had agreement with a NDIS planner for us to conduct a face-to-face virtual meeting to confirm all evidence had been received and to check mutual understanding of my child’s complex disability support needs, prior to plan approval and release. This never happened. My child’s plan was approved and released without the agreed face-to-face virtual meeting taking place or other substitute consultation given to me.
The planning process was unethical; I experienced a switch in planning delegates without notice or consultation with me. A senior planner unknown to me, took swift delegation of my
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child’s plan from a planner I had begun liaising with and sending evidence to, and without notice or consultation with me, made their own decision on plan funding approval – and to disastrous eƯect. The razor marks in the released plan were clear to see, as decisions were not consistently logical across funded supports.
Action: NDIS planning delegates/managers must follow NDIS policies and procedures and as public servants provide a duty of care to the participant. Decisions and procedures must remain fair and not be influenced by top-down pressures for arbitrary and reckless funding cuts. Protections need to be built into the Scheme whereby NDIA delegates/managers can be answerable for unsafe decisions that put participants’ lives at risk of serious harm or death, and for participants to have immediate recourse to rectify a harmful decision without s100 appeal.
- The NDIS Future Generations Bill has not yet passed the Senate, yet the NDIA has already assumed functionality of this Bill in their planning process.
Disability supports for impairments associated with primary disability are being denied.
My child was denied orthotics for toe walking impairment associated with Autism, even though evidence of impairment related to primary disability was provided by a paediatric podiatrist. My child was denied feeding supports and 1:1 supervision for high choking risk associated with Autism, even though evidence of impairments related to primary disability was stated and provided by a feeding/speech pathologist and a paediatric dietician.
This Future Generations Bill risks reversing the protection established by the Federal Court in Eastham. Participants with complex disabilities rarely require supports because of a single impairment in isolation. Their support needs arise from the combined impact of multiple impairments. This is particularly crucial for participants with severe or profound Autism whose comorbid multiple impairments cannot be singled out or dismissed.
Action: The proposed functional capacity assessment to determine a participant’s funded supports must not lose sight of the Federal Court decision in CEO of the NDIS v Eastham for the NDIA to consider the combined eƯect of all a participant’s impairments in their decision to fund supports.
- Administrative mishap and errors. The administration of the Scheme is fraught with mishap and errors that are burdensome on participants to rectify.
I experienced a failure of NDIS enquiries (the call centre) to process a Home Mods application that sat on their email server for 8 months, without case number processing or forwarding on to the relevant department for consideration.
A simple miscalculation of hours per weeks resulted in a lesser amount of $14,000 in an approved plan.
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Action: An accessible and easier pathway must be considered for participants to rectify administrative mistakes. Assistive Technology applications should have a transparency log that participants can access for status updates.
- Carers and their human rights must be protected and supported in this new Bill. Parents/carers of severe and profound NDIS participants must have the human right and dignity to go to the toilet privately when taking their person with disability out into the community. This necessitates 1:1 funded support to provide safe supervision of their person with disability.
Action: Carers of NDIS participants with severe and profound disability must be given 1:1 support for safe supervision of their person with disability while out in the community, to enable a Carer to exercise their human right to use a toilet. I endorse Carers Australia advocating for a formal and comprehensive Impact Assessment on unpaid carers, however this should not be onerous on proof for the Carer.