Submission 3011 — Name Withheld — NDIS Future Generations Bill

SUBMISSION REGARDING: National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

SUBMISSION FROM: , a family member of a teenaged Person with significant lifelong disabilities and functional impairments. The Person is considered: “a child”, is almost 16, is 6 foot 2”, is in high school, and is wanting to access an ordinary life (like teenagers his age typically access).

Attention: Committee Secretary, Senate Standing Committee on Community Affairs

Submitted by email: community.affairs.sen@aph.gov.au and ONLINE PORTAL

Date: [10/07/2026]

Thank you for the opportunity to make a submission to the Senate Standing Committee on

Community Affairs about the National Disability Insurance Scheme Amendment (Securing the NDIS

for Future Generations) Bill 2026.

My name is and I am a family member of a young Person who has lifelong disabilities and is an NDIS participant. Please know I submit this document from a layman’s perspective and if I cause any distress to anyone, it is not my intention – I apologise in advance.

I urge those responsible to please either not pass or significantly amend the proposed Amendment Bill 2026. If the Bill is left “as is”, it will cause harm to all People who are NDIS Participants and their families/ informal supports if it passes Parliament. The Bill requires much more scrutiny, amendments, consultation with the disability community, and removal of proposed sections and subsections before it proceeds.

There are many issues to be raised but I only have the capacity to provide a submission regarding a few of the amendments proposed, specifically under S34 of the Bill – relating to parental responsibility. That said, I am sure other members in the disability community and their advocates will raise many more issues with the amendments, including new section 34A, the proposal that a government minister be provided an extraordinary amount of decision making power regarding removal/ reduction of support provision to Participants. This proposed section is contrary to the principles the NDIS Act was founded upon. The ministerial centralisation of power woven within the amendment Bill should be removed. Furthermore, the more recent proposal to use ministerial power to further restrict some of the most vulnerable Australians from accessing the community and an ordinary life is not acceptable and it will most certainly impact the health and safety of Participants and their families. Objects and Principles within the NDIS Act must be upheld and any proposed legislation amendments must reflect them. The disability community aren’t asking for a “best life” as Jenny McAllister stated during the recent senate estimate hearing hearing – an ordinary life with inclusion, like other Australians typically access, would be gratefully accepted by many in the disability community.

Issues Regarding S34 : The proposed Bill inserts new subsections 34(1G), (1H) and (1J), relating to parental responsibility, which are of grave concern.

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Subsection 34(1G) sets out a presumption that “parents are responsible for providing substantial care and support for their children”.

Subsection 34(1H), outlines substantial care and support includes:

(a) supervision, personal care, transport, emotional support and behavioural support, and

(b) other assistance with the activities of daily living that, regardless of the child’s disability, would reasonably be expected of a parent of a child of a similar age.

Subsection 34(1J) relates to the NDIA not being permitted to consider factors such as reducing burdens on families, improving household efficiency, or a parent’s preference for support provision.

Recommendation regarding subsections under S34:

Remove the proposed amendments regarding parental responsibility, in their entirety – as the NDIA currently administers the NDIS in a manner that is over reliant on parents and informal supports - in contravention to the current NDIS Act. The NDIA does not currently consistently consider the capacity, availability, nor sustainability of parents/ informal supports.

OR

Amend S34(1G) significantly, including: removing the words “substantial” and “providing”, and reword via consultation with parents in the disability community e.g. “parents are responsible for arranging the care, support and assistance at a level reasonably expected of parents of a typically developed child” AND remove 34(1H) (a) & (b) AND remove S34 (1J) AND scale the care and support reasonably expected according to the level of care provided to children and teenagers typically, according to:

-their age / developmental stages and

-diagnosis / functional capacity (with consideration that this can fluctuate) and

-availability and capacity of parents/informal supports to provide care and support (including work commitments and any other responsibilities they may have for the care/support to others beyond the Participant) and

-consider any risks to the participants, their parents/ direct informal supports, and people they live and interact with regularly.

The reasoning for this recommendation;

The proposed amendments under S34 are discriminatory in nature and contrary to the principles within the NDIS Act. They do not recognise the economic, social, physical,

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health, wellbeing and relational risks associated with over reliance on informal care and support provision on a Participants, nor on their parents/ informal supports.

It is not reasonable to presume that parents should be responsible for “providing” “substantial” care and support for their children beyond what a parent would typically provide due to:

 The level of care and support required can be vastly different between a typically developing child/teenager and a child/teenager with functional impairments.  The level of care and support required decreases for a typically developing child/teenager as they age. They become more mature and independent from their parents / informal supports. This is not the case for a child/teenager with functional impairments. It should be presumed that parents / informal supports should provide less care and support to teenagers as they age/mature.  It should not be presumed parents and informal supports are available / have the capacity to provide substantial care and support for their children/teenagers when they need it. This can be for a range of reasons including; o work commitments – as parents / informal support people endeavour to ensure the child/teenager is provided for economically, along with their family ensuring they have security across life domains. o other support requirements e.g. for other siblings who are children/teenagers– others within a family need to be cared for and supported by parents / informal supports too. They should not have to go without a typical level of parental support. It is not reasonable to expect and demand that a parent / informal support to substantially prioritise the care of a child/ teenager who is a NDIS participant over their siblings o care and support responsibilities for elderly parents. Parents / Informal supports are not immune to being in the “sandwich” generation. We can be very much affected, and it compounds carer burden. o ongoing functional impairments / health issues impacting parent’s / Informal support’s capacity to provide care and support for others. We are human. o differing levels of parents / informal supports being available to children/teenagers– some have single parents; some have no other informal supports aside from their parents. They may have no aunts, grandparents, friends or anyone else with the capacity to support their child/teenager who is an NDIS participant. o health and life events – it should not be presumed parents / informal supports are available continuously. Health events can cause a fluctuation in their capacity to support others (e.g. a parent could fracture their leg and not be able to support as they normally would). A change in living arrangements, moving communities, changes in work demands and carer demands required for siblings / elderly parents, and relationship

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breakdowns could also impact a parent’s / informal support’s capacity to provide support to a child/teenager who is an NDIS participant.

A couple of examples to illustrate some of the points above are as follows:

Example 1 regarding personal care- it would be reasonable to expect a parent / informal support of a very young child / toddler to fully assist them with all personal care tasks e.g. teeth brushing, toileting steps / changing nappies.

However It would not be reasonable to expect a parent / informal support of an older ”child” (e.g. 12 to 18 year old) with reduced functional capacity to undertake a substantial amount of personal care tasks like brushing their teeth, changing their nappy / changing colostomy bag and/or wiping, hygiene tasks, hoisting, wiping/ washing soiled area of skin, undertaking catheter / stoma changes/management, showering/bathing, shaving, changing menstruation products, supervision during all personal care tasks, dressing, cutting nails, applying personal hygiene products, washing soiled (urine/faeces/blood/ sputum) clothes / linens / continence products, provision of sexual hygiene support etc.

Typically, parents of children/teenagers between ages of 12 and 18 would almost NEVER be responsible for provision of the abovementioned personal care tasks. Likewise, teachers are not required provide continuity of education for students AND undertake personal care tasks/supports to 12–18-year-old students– schools designate additional staff to provide personal care support for students with functional impairments.

It would also not be reasonable to expect a parent / informal support of a young child child with reduced functional capacity to provide all personal care tasks to the child if the parent had chronic sleep deprivation after spending 2 or 3 nights up and in a hypervigilant state, monitoring a child for safety reasons. Parents / informal supports may be present with a child; however, it does not mean they have the capacity to support their child continuously 24 hours a day, 365 days a year.

Example 2.

It would not be reasonable to expect a parent / carer / informal support of a typically developed teenager to provide substantial care, support and supervision across the areas outlined in subsection (1H), (a) and (b). This would be only necessary for teenagers with reduced functional capacity (who would more likely need to be directly supervised whilst not at school).

Typically, parents of teenagers are almost NEVER responsible to provide a substantial level of support as outlined in subsection (1H) (unless there are geographical / public transport constraints). Many teenagers can readily use public transport to attend school, casual work, and engage in social / community-based activities independently without direct supervision, care and support. Teenagers increasingly spend more time independently in the community and with peers as they age– this should be encouraged and is developmentally appropriate.

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They are also able to increasingly access health, emotional and wellbeing support independently of their care givers.

Furthermore, the government and states have determined:

• At 14, child can apply for a tax file number (TFN) without parent / informal support assistance. They can also apply for and operate a bank account independently.

• When a child turns 14, teenagers have the right to consent to simple health care and parents / informal support can no longer have access to their Medicare claims nor immunisation history. From 16, they have the same right to consent to things like health care just as adults do.

• Teenagers can generally see a health practitioner and seek wellbeing supports without parental consent or knowledge from age 14. They can consent independently and have full rights to confidentiality. They can have appointments on their own and can make decisions by themselves, for themselves

• It is typically accepted that children over 12 or more can be left unattended– it may be for short amounts of time initially and increase as they mature and grow older. A judgement of maturity is required, and if all is ok, being left at home alone or being able to socialise in the community is part of developing independence. Typically, all parents will make the decision to leave their child at home alone or allow them to catch up with friends without direct supervision at some stage under the age of 18.

• Children over 11 can undertake paid light work and teenagers over 15 can work without 100% direct supervision, as developmentally they have a higher level of personal responsibility, autonomy and independence. They do not require their parents/ informal support to provide 100% supervision. Teenagers can leave school and work full time at aged 17.

References as follows

What happens when your child turns 14 - Growing up - Services Australia

Going out independently: teenagers | Raising Children Network

Teen health care rights & responsibilities | Raising Children Network

How this affects young People, Teenagers and Children who are NDIS Participants and their parents/ informal supports and families

I cannot comment on the experience of others, but I can share from our personal experience that the NDIA is currently making decisions just as if these amendments had already passed. I cannot emphasise enough how the much recent shift in the NDIA’s attitude towards parents and informal supports has detrimentally affected both my Son, who is an NDIS Participant, and our family.

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There has been a significant reduction in the acknowledgement of parental and family wellbeing and supports required to sustain informal supports. The NDIA’s decisions can have a profound effect across all life domains for Participants and their families removal/omission of formal supports can essentially turn a Participant’s life upside down.

I know firsthand - a decision made by the NDIA in August of 2025 to remove supports/ provide a reduced level of support to my young person within his NDIS Plan under the guise of “parental responsibility” has led to a lot of distress. His capacity has regressed since August - due to removed/ reduced supports and my immediate family’s lives have been impacted physically, socially, and economically. There has also been a deterioration of our wellbeing. The NDIA did not assess any risks during the planning, nor consider our other care responsibilities. Furthermore, the NDIA did not act in a manner that fulfilled Principles S5 (a), (b), (c), (d), (e) & (f) (i), (ii), (iii) of the NDIS Act.

We have appealed the decision but have endured an extensive wait to get the NDIA decision reviewed internally and externally– the ART has been inundated with appeals. In the interim we have been attempting to pay for some of the necessary supports in a desperate attempt to stem regression, but it is not sustainable. I remain underemployed to support my young person as the NDIS Planned supports fall well short of where they need to be.

Can I please ask that you either not pass or significantly amend the proposed Amendment Bill 2026 –more consultation with the disability community needs to be undertaken and co design must be prioritised.

Thank you for your consideration.

With Regards,

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