Submission 1471

NDIS Submission Statement 2026

I am writing to share my experience raising a child with ‘moderate’ level Autism (ASD) and Global Developmental Delay (GDD), and my concerns regarding the proposed NDIS changes. I am the mother of 2 young children, H (8) who has been diagnosed with ASD level 2, GDD and ADHD, and L (5) who has mild developmental delays (we are still undergoing assessments and awaiting any supports).

H has been under the NDIS Early Childhood Approach since aged 3 and has participated in weekly (now fortnightly) Speech Therapy, OT, attended a 2 day/week Autism Queensland Kindy program for 1 year plus some sessions with a Dietitian. At age 4 and 5, h was receiving regular therapies and programs to get ready for school. At this age,h was still not toilet trained, minimally verbal, refused to even hold a pen or pencil, unable to attend to an activity longer than 30 seconds, unable to go into toilet facilities outside home, unable to go into any doctors/clinic/classrooms, unable to go in a lift or on an escalator, and it took 2 people to peel her off me at drop off at daycare or Kindy. Nowh has started grade 2 at a mainstream school which she attends full time, has not yet needed a modified curriculum, has friendships, and is writing, drawing and reading. This is a wonderful outcome, which would not have been achievable without the Early Intervention supports she has received.

There are many changes in this Bill that concern me, but in the interest of brevity, I have only included the ones that will make an immediate and detrimental effect on the lives of H , L , myself, and those around us.

1. Expanded definition of ‘Parental Responsibility’

I am still parenting H as if she was 3 years old, doing nearly all daily tasks for her and providing scaffolding in every single moment of her life. For example: cleaning her teeth. There is only 1 toothpaste I have been able to find that has enough fluoride without the mint taste. We have found a specific model of electric toothbrush that still has the electric function (to be able to brush her teeth better with limited compliance), but is very gentle and not over stimulating. I get her specific toothbrush ready with her specific toothpaste (kept up high because H likes to make ‘potions’ with any soaps/shampoo/toothpaste/anything else liquid or in a squeeze or pump bottle) and a cup of water and take them to H , because getting her to go into the bathroom to brush her teeth is not possible. I use an ipad to keep her distracted while I brush her teeth for her. I clean up for her after. I have also used apps and rewards to encourage compliance in getting her teeth cleaned (let alone being able to clean them herself). Every moment of every task is like that, well above and beyond what is expected for a ‘typical’ 8 year old. And yet this Bill refuses to recognise this work.

These problems are known. Direct quote on Page 236 of the Explanatory memorandum of the Bill: “Changes may increase expectations of informal supports… Given most carers are female, these impacts may be disproportionately experienced by women.” Labor is not for women.

2.Access and lack of information on what ‘treatment for impairments’ will be required for

Submission 1471

Eligibility concerns regarding treatment access barriers

The proposed definition states that “treatment may still be considered appropriate regardless of:

• Financial barries
• Geographical barriers
• A participant’s capacity to access treatment.“

I grew up rurally and lived regionally for a number of years before moving to a city. I am so glad I moved to a city because H would not have had access to the same supports and options regionally/rurally as she has had (and that is a real shame). This Bill proposes to make the city-country divide worse. It also proposes to make the rich/poor divide worse as only those who can afford whatever these ‘treatments’ may be can move forward in accessing the NDIS.

There are also no details provided on who decides what these treatments are. People are more than one label, what suits one person may not suit another due to co-diagnoses or other factors in their lives. Treatments should be (and are in all other settings) individualised to suit each unique person. Will children with “severe” additional needs be made to complete underfunded programs under Thriving Kids first before being able to access the NDIS, missing out on vital supports early on?

Ministerial powers to set pricing, introduce funding caps & make cuts beyond the 10% and 50% reductions already announced

The title of the proposed Bill is “Saving the NDIS for Future Generations.” This proposal goes directly against that and opens the NDIS up to severe arbitrary cuts from future governments of any persuasion. This represents a significant departure from the foundational principles of the NDIS, which are intended to be based on individualised assessment of disability support and individualised plans. We will need to re-name the NDIS if this Bill is passed, because this scheme won’t be the NDIS anymore, it will be something completely different.

It really scares me that H ’s funding could be cut by any amount, at any time, without any reason (other than disabled people are too expensive), and with no consideration to individual circumstances. Even the proposed 10% cuts to Capacity Building can have a significant and material impact. H ’s school readiness program through Autism Queensland was paid by the term, and if we were unable to cover the cost, she would loose her spot to someone else on the waiting list for that year. This would mean she would lose out on the support completely, as H had to start school the next year. These cuts have much larger implications than a few weeks of missed therapy.

Increased automation of processes without adequate safeguards

The rollout of the Integrated Assessment Tool (IAT) in Aged Care provides a cautionary example for the proposed NDIS Support Needs Assessment Model. Evidence is emerging that needs are overlooked, carer strain is underestimated, participants receive lower support classification than required and transparency is limited. I work as a community physiotherapist, and every single day I see IAT assessments with poor and inadequate outcomes, pushing participants back into the review system and using much more aged care assessor time than if the tool determined the correct level of care in the first place. I am supportive of AI in summarising assessment findings etc., but any decisions need to be made by adequately trained and experienced health care professionals.

90-day timeframe for unscheduled plan reviews

Submission 1471

If unscheduled plan reviews are only to occur in the most urgent of circumstances, 90 days just to make a decision on if the NDIA are going to reassess the plan (let alone actually completing the plan review and the funding being available to use) is way too long. A benchmark of urgent and immediate requires an urgent and immediate response. The most alarming part of this proposal is that the NDIA doesn’t even have to respond in 90 days. No response after 90 days is not treated as a refusal (ie a reviewable decision), we can be left waiting for help for an indefinite period of time. This is dangerous. My work as a community physiotherapist aims to keep people in their own homes and avoid a hospital admission. I cannot even comprehend how we will be able to support people at home with the NDIA able to go MIA.

I call for:

• Delaying the legislation of the proposed Bill to allow time for co-design
• Significant and real co-design with the disability community, where what they say can influence the outcome. A voice is only meaningful if it is capable of changing a decision.
• A harm tracker mandated to count the number of suicides and avoidable deaths of disabled people, avoidable hospital admissions and delayed discharges, with an optional portal for people to self report lost ability to work, families separated and opportunities lost. If the government is so sure this proposed Bill will not harm disabled people and their families, then let’s track that. Prove us wrong.

I hope that someone, somewhere will read our submissions and consider what we have to say.

Thank you for your time.