Securing the NDIS For Future Generations Bill 2026

Thursday, 28% May 2026

To whom it may concern,

RE: Securing the NDIS For Future Generations Bill 2026

My name is J. and | am a single mother of two disabled sons aged 19 and 17 who have severe autism, global developmental delays, and anxiety. Due to both boy’s diagnosis, their daily level of care is high due to their disability and associated challenges with cognition, behavioural and emotional regulation and with communication. Both boys require significant assistance with self-care and personal hygiene, meal preparation and in my older son’s case assistance with feeding, accessing the community safely, grocery shopping, chores around the home, advocacy within educational, therapeutic, and medical settings, government agencies as well as money managemeni. | am my older son’s legal Guardian and Administrator for this precise reason and will apply to become my younger son’s legal Guardian and Administrator in a few months’ time.

Whilst | support the objective of placing the NDIS on a sustainable long-term footing, | am writing to you regarding my concerns with the Securing the NDIS For Future Generations Bill 2026. | do not support this Bill in its current form. To be honest, reading the document is very overwhelming and the information provided on social media causes me a lot of anxiety and uncertainty surrounding how these changes will affect my family, how they will affect the families of dear friends, the potential negative impacts and the addition of more pressure, when we are already under significant strain on a daily basis. Trying to keep my submission as short as possible, there are several changes that, in my view, the committee should recommend be amended before passage.

1. For those like my sons who are already on the NDIS, the Minister can cut your plan by instrument, with no review (proposed section 34A)

A percentage of funding can be removed from a support category by legislative instrument. The first cut is already locked in affecting social and community participation, which is to be phased in from the beginning of October 2026 as plans are renewed.

As previously mentioned, both of my sons require a high level of support and will for their lifetime. Social and community participation funding is the mechanism through which essential supervision, behavioural support, communication support, and active disability support are delivered outside of our home. It is an invaluable lifeline to the outside world. Both of my sons require 1:1 support, so a percentage-based reduction to community participation funding does not reduce the need for

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e there has been a significant and ongoing change in their ongoing support needs;

• e the change affects the participant’s functional capacity in an ongoing way; or

-e unanticipated changes in personal or environmental circumstances such as losing a primary informal carer or changes in living, work and/or educational arrangements.

The Bill will also permit the NDIA more control on whether or how it responds to reassessment requests:

-extending the time for the NDIA to decide a reassessment request up to 90 days;

-the NDIA will only consider a reassessment request if made in a specific form and includes any information requested by the NDIA; and

-removes safeguards for participants if the NDIA does not decide a reassessment request in time. The NDIA may decide to transition the participant to a new framework plan, if this is the case, the decision is not reviewable.

Caring for my children alone with no informal support has always been difficult but is more exhausting now they are both transitioning into young men and are simultaneously navigating puberty. Sadly, with the hormonal changes both boys are experiencing frequent dysregulation and increased levels of anxiety. When you have gotten to know my older son, you can generally identify when he needs a break before he lashes out, whilst my younger son tends to be more explosive. He is particularly good at masking and whilst he copes and enjoys an activity or outing, when he returns to the safety of our home, the stress and pent-up overwhelm is released. He will self-harm, hurt me and damage walls and/or items within the home. As he is physically larger than | am now, when he melts down, it is frightening and heartbreaking as he is out of control in that moment and cannot stop the injurious behaviours. Two years ago, he injured himself so badly that he required plastic surgery to repair multiple wounds on his head and arm. These incidents are not only utterly exhausting and traumatic for everyone, but | am particularly concerned about the repetitive head injuries and potential long-term damage.

Over the past three years, our world has been significantly reduced to just home and school to help both boy’s levels of anxiety and to avoid my younger son’s melt downs. Throughout this period, we have received support from a child psychiatrist who has prescribed medication for both boys. Whilst the medication has helped, it is by no means a ‘quick fix’, particularly for my younger son. It has only been in the last month that we have resumed therapy within the home, and | cannot

remember the last time we left the house as a family unit. It is incredibly isolating and heartbreaking, but hunkering down and stripping our life back to the bare essentials has been imperative for everyone’s wellbeing and safety. The pressure of living in a constant state of hyper vigilance, means that my health has been impacted enormously, to the point that | had to make the difficult decision to resign from my part time job of eleven years.

My younger son and | attended an appointment with the child psychiatrist last month, it was at that time, that he announced his decision to close his practice in June 2026 and that | should seek the ongoing support of a Positive Behaviour Support (PBS) practitioner who has experience with young people with disability who are exhibiting behaviours of concern. Unfortunately, my son’s plan does not currently include funding which can be used for this purpose. Whilst these behaviours of concern are impacting his functional capacity in an ongoing way, | am frightened to proceed with a request for reassessment for several reasons:

• the uncertainty of this Bill and the fact that we, the disability community, have such a short period of time to decipher the proposed changes, process how that may impact our daily lives and then lodge our concerns via submissions to the Senate Committee Inquiry with the deadline being Friday 29 May 2026;

• the fact that a significant portion of my son’s funding has been untouched due to his lack of capacity, could | be putting his current plan at risk of a cut or transition to new framework that as far as | am aware does not currently exist and once implemented, cannot be appealed; and

• my son graduates from his special needs school in December 2027, | am mindful that | will be requesting a plan reassessment mid-2027. Do | just make do until then?

3. Eligibility itself is being reopened via the introduction of a new “functional capacity” test (proposed subsection 9B).

From January 2028, existing participants can be reassessed.

May | suggest that the new functional capacity test only be released after the assessment tool has been designed, consulted on by the disability community, piloted, thoroughly assessed / evidenced and made public.

4. The parental responsibility presumption (proposed subsections 34(1G)-(1J))

The Bill would require the NDIA to consider the ‘presumption’ that parents are responsible for providing “substantial care and support” (supervision, personal care, transport, emotional and behavioural support) for their disabled children.

There is a drafting flaw to flag: only paragraph (1H)(b) carries the qualifier “regardless of the child’s disability” - the (1H)(a) list does not. On the literal text, the presumption is that parents do all “substantial care and support” as shown above, as well as assist with daily living activities that would be reasonably expected of a parent of a child of a similar age. Section 34(1J) prohibits

funding whose primary purpose is to “reduce burdens on parental time below what is reasonably expected of a parent’ — with no objective benchmark for what is “reasonable”.

My main concern with this subsection is that it does not seem to consider the impact on a family such as mine, where there are no informal supports and consists of one parent caring for multiple children with disability and high support needs. My sons are completely dependent on adult support with all daily activities. I rely on intermittent formal support to ensure everyone’s needs are met and we can maintain some sort of quality of life that those without disability do with ease and may even take for granted.

Thank you for your time, I hope you will take my submission into consideration.

Yours sincerely,