Impact of proposed reforms on son's supports (Family or carer experience)

Submission 2825

1st June 2026

Committee Secretary

Community Affairs Legislation Committee

Department of the Senate

PO Box 6100

Parliament House

CANBERRA ACT 2600

Via email: community.affairs@sen@aph.gov.au seniorclerk.committees.sen@aph.com.au

cc:

Dear Secretary and Honourable Senators of the Committee,

The following is our submission to the Committee’s Inquiry into the National Disability

Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill

The identifying details in this submission are for the members of the Committee, the Secretariat and our local member, , only. Any published version of this submission should redact any material that would tend to identify our son, including the names of schools he has attended.

Kind regards,

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Submission 2825

1st June 2026

An ordinary life

A submission to the Senate Community Affairs Legislation Committee

Inquiry into the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

By Parents of an NDIS participant

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Submission 2825

CONTENTS

An ordinary life

Foreword 3

1. Introduction 4 2. Disability requirements – permanence 5

2. Funded supports and plans 6

3. Social & Community Participation 7

4. Informal supports 8

5. Reviewability of plans – ‘unanticipated’ 9

6. Securing the NDIS? 10

7. Recommendations 11 Some closing thoughts 12

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Submission 2825

Foreword

Our son was born at the Canberra Hospital on the city’s coldest night of 2008. He weighed 1160g. He had stopped growing in-utero. As developed the potentially fatal (to mother and foetus) HELLP syndrome (severe pre-eclampsia), she delivered their son under general anaesthetic by an emergency C-section at 31 weeks’ gestation.

When , who was not permitted to see the delivery, eventually saw their son in his humidicrib, attached to a spaghetti of wires and the pipe of a CPAP, he thought, ‘my beautiful boy, he’s tiny, but perfect’.

More than two months later,      &        took their son home on the day he

would have been born, had the pregnancy which created him gone to term.

They both thought that plenty of premmie babies had grown to live an ordinary life. Those thoughts started to change, when after their son’s nine-month check-up back at Canberra Hospital, the staff observed that he was exhibiting a speech delay. Even before that, they had noticed him rocking back and forth in his cot, an early indication that he might grow up autistic.

He has. When their son was two and a half years old, the multi-disciplinary team at Sydney’s Royal North Shore Hospital diagnosed him with autism spectrum disorder. There have been further diagnoses of an intellectual disability, a severe expressive and receptive language disorder, ADHD and anxiety. His autism is diagnosed as ASD (Level 3) and his intellectual disability is diagnosed as moderate. A mosaic of diagnoses that clinicians have described as ‘the whole package’.

This year he turns 18, and he will leave his special needs high school. His age will qualify him to vote. While his special interests, evidenced by stilted conversations, include the national leadership and capital cities of many countries, his neurological and intellectual impairments place him in the lower end of the first percentile of individuals his age.

This has led        and          to conclude that voting is not in his future. His

severe speech delay makes establishing friendships extremely difficult. He will never be able to have an adult intimate relationship. If he obtains a job, his complex mix of diagnoses ensures he would require one on one supervision to keep him on task.

When former Prime Minister the Hon. Julia Gillard AC announced the establishment

of the NDIS (and NDIA) in 2012,      &       saw hope for their son. The

hope of creating for him an ordinary life.

When just two weeks ago NDIS Minister the Hon. Mark Butler announced his

reforms,        and             , like many participants’ parents, and participants with

capacity to recognise it, saw the promise of an ordinary life evaporate. Instead, these reforms promise to consign again many disabled Australians to the fringes of society where many will suffer re-institutionalisation by another name and method.

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Submission 2825

1.0 Introduction

The authors note that the Committee will ‘only accept submissions which directly address the provisions of the bill’, but that ‘personal experiences’ are ‘welcome’. We think the personal experiences included below illustrate the likely effects of the amendments at the micro level of our family. Many participants and their families are likely to have similar experiences to ours.

The aim of this submission is to assist the Committee to make recommendations that truly can ‘secure’ the NDIS, without stripping many thousands of disabled Australians of essential funded supports.

While we are terrified at the potential effect of the reforms on our son, we are not opposed to measures that improve the effectiveness and sustainability of the NDIS. However, we are bewildered that disabled people and their carers are to bear the sentence for errors made by others.

We are likewise disheartened by apparent readiness of the Government to ‘reconsider’ and consult on proposed tax measures that will affect wealthy Australians. Yet, barely a word has been said about reconsidering these NDIS reforms which have the potential to permanently harm the quality of life for many of Australia’s most vulnerable people.

There is clearly an immense disparity between these two groups. The wealthy are heard and respected, while many disabled people and their carers can barely raise their voice.

This submission will examine the areas of proposed reform that have the potential to impact negatively on our son, including provisions with respect to: qualifying for the scheme; tests for supports; social and community participation; informal and community supports; and review mechanisms. This is not an exhaustive critique of the bill, so we should not be taken to support or oppose outright, other aspects of the reforms.

We will also discuss how these reforms are at odds with the original aims of the NDIS. At the conclusion of this submission, we offer recommendations for the Committee to consider including in its report.

The timetable which binds this Committee is utterly unfit for the purpose of obtaining the meaningful and considered input of disabled people or for the production by the Committee of a meaningful and considered report.

While this submission aims to be our original work, we are indebted to the Justice & Equity Centre which has produced a concise and useful Explainer1 of these reforms. We respectfully adopt the concerns expressed therein about these reforms and repeat some of them below.

1 Explainer: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill

2026

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Submission 2825

2.0 Disability requirements - permanence

2.1 Given our son’s diagnoses of ASD (Level 3), moderate intellectual disability, severe receptive and expressive language delay, ADHD, and anxiety, we could not have imagined a circumstance where the NDIS would not consider his impairments to be permanent for the purposes of Section 24(1)(b) of the Act. That has now changed.

2.2 We still harbour hopes that our son will learn to manage his impairments to the point that we are not running his bath, washing his hair, or alternatively, constantly supervising him in the shower; that he could walk to the local shops independently; that he could cross the road without assistance. As he approaches his 18th birthday, he is not there yet. He’s a long way from there. While there are incremental improvements, his neurological and intellectual impairments are not ‘getting better’.

2.3 Yet the proposed Section 24(5) imposes requirements on him that are almost impossible to meet, particularly subsection (b)’s any other treatment. The proposed new Section 25A(2) creates a sort of Catch 22 for meeting the disability requirements. Can’t access the treatment? Sorry, you’re deemed to have not bothered. To paraphrase Seinfeld’s Soup Nazi, ‘No support for you!’

2.4 With the support of the NDIS, we have been able to access behavioural supports, occupational therapy and speech therapy that have helped him progress, but our son’s support team has consistently requested more therapy hours. He may well have made more progress had these experts been heeded.

2.5 On the subject of supports, we have been blessed with several dedicated support workers who are far from the phone-addicted dead beats described by the Minister. While not denying there are such cases, this has unfairly tarnished the reputations of many people across Australia who are committed to supporting disabled people through this important work. By this careless language, the Minister has contributed to the loss of the NDIS’ social licence that he so laments.

2.6 We accept as well, that the NDIS is staffed with those who are likewise dedicated to making correct assessments of the disability requirements, including with respect to the permanency of impairments. Our confidence though is somewhat eroded by episodes including a participant’s parent being told to “get more evidence” to prove that her child’s chromosome deletion and intellectual delay are lifelong.

2.7 With such discussions occurring in advance of the passage of these reforms, we are not unreasonably fearful that our son will somehow fail to meet the amended disability requirements, and will be removed from the scheme by those who have been entrusted to provide support to Australians with a disability.

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Submission 2825

3.0 Funded supports and plans

3.1 The proposed repeal of Section 31 of the present Act tears the heart out of the NDIS. The importation from Section 31 into Section 17A of a bare minimum of those principles, sweeps away principles that support the dignity and independence of disabled people.

3.2 Gone are the principles that require a participant’s plan, (so far as reasonably practicable) be individualised2 and directed by the participant3, advance the participant’s inclusion and participation in the community4, and maximise the choice and independence of the participant5

3.3 The removal of these principles from the Act represents a wholesale disempowerment of participants.

3.4 The Preamble to the United Nations Convention on the Rights of Persons with a Disability6, recognises disabled persons’ autonomy and independence’ and speaks of the importance of their active involvement in decision making about policies and programs that directly concern them.

3.5 It is mere coincidence, but no less symbolic or ironic, that the relevant paragraphs of the Preamble are numbered (n) and (o). The changes foreshadowed in the bill mark a retreat from these ideals to which Australia signed up.

3.6 We are therefore alarmed that these and other changes, particularly in the proposed new Section 17B, “shift the focus of decision-making about ‘reasonable and necessary’ supports away from the individual needs and goals of participants and toward the financial sustainability of the scheme.7”

3.7 We are also concerned that the legislation reverses the Eastham8 ‘whole of person’ approach. Our son has ‘toe-walked’ since he began walking; one of the well-established indicia of ASD. This, combined with a congenital hip retroversion has resulted in muscular skeletal and gait issues which require regular physiotherapy. While we are presently funding this privately, we believe it’s reasonable to regard this as being sufficiently connected to his disability to warrant the provision of appropriate supports under the NDIS.

3.8 As noted in the Introduction to this submission, we recognise the need for sustainability and are not implacably opposed to reform. But careful re design, rather than a legislative sledgehammer to the lives of disabled people, is surely preferable.

2 S31(a) National Disability Insurance Scheme Act 2013 3 S31(b) ibid 4 S31(h) ibid 5 S31(i) ibid 6 https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf 7 Justice & Equity Centre, ibid, p7 8 https://www.austlii.edu.au/cgi-bin/viewdoc/au/cases/cth/FCA/2026/147.html

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Submission 2825

4.0 Social and community participation

4.1 We know that work provides independence, dignity, belonging and purpose. The extent of our son’s disability means that he is most unlikely to find a place in the open employment market. Even supported employment appears out of reach at present.

4.2 Three recent trial days at such enterprises has confirmed that, while he is able to complete tasks, he cannot do so without constant one on one support. This level of support is not available.

4.3 The remaining path for our son to find independence, dignity, belonging and purpose lies in finding activities that can fulfil these needs. In short, he needs support for social, community and civic participation to realise his shared humanity. He will otherwise experience an adult life of social isolation.

4.4 The Minister, in his Second Reading speech9, concentrated only on the costs of such supports, with not a thought directed to how disabled people, particularly those for whom work is not an option, would find a place in our community to express their shared humanity.

4.5 Again, we stress, we do not oppose balanced efforts to make the NDIS more efficient and sustainable, but the foreshadowed reduction in supports to assist social and community participation will leave many disabled people cut off from their communities and increase the risks of deteriorating mental health, behaviours of concern, and social exclusion.

4.6 This will only be exacerbated by the operation of the proposed new Section 34A; an instrument which is at once both sharp and blunt. Threatening a cut of anything from 0.1 percent to 99.9 to whole categories of support, it is an anvil dropped on every participant in receipt of that funding support. The categories of support the Minister names as being apt for such treatment is social and community participation and capacity building.

4.7 We do not possess the expertise in administrative law to know whether a challenge to this provision would have reasonable prospects of success, but at the very least, it is enormously unfair. Subsection 34A (2)(c) is particularly brutal, as it empowers the Minister to make cuts without any notice, or right to be heard, to funding already allocated as reasonable and necessary in participants’ plans. Reliance on these plans, a reasonable expectation on the part of any participant, would be rendered foolhardy or naïve.

4.8 So unjust are these provisions, that it is scarcely possible to credit that a Government that speaks of compassion could possibly have meant to propose them.

9 Minister Butler Second Reading Speech House of Representatives 14 May 2026

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Submission 2825

5.0 Informal supports

5.1 Our son has given us more joy than we could have imagined. We would be mortified if the foregoing descriptions of him, the challenges he faces, and our fears for his future, were to be interpreted as carrying any amount or type of resentment or misery at our circumstance.

5.2 A consistent opening of many reports from those who support our son describe him as ‘a lovely young man’, or terms not dissimilar. And he is.

5.3 While he needs significant processing time to respond to a query, he has his own sense of humour, best recognised by those who know him best. We are proud of him. We understand no agency is responsible for our son’s daily living expenses, nor indeed the ‘wide breadth’ of ‘care and support’10 any child may need. We, his parents, agree that we are responsible for such things.

5.4 However, we take issue with proposed Section 34(1H)11 that includes ‘behaviour support’ among the matters the CEO must consider is provided by parents.

5.5 For a child with no neurological, intellectual, or language deficits, this is eminently reasonable. But our son’s behavioural issues are not rooted in the ordinary. His idiosyncratic and sometimes confronting responses flow from his constellation of impairments. We believe that he will continue to need regular support for behaviour management for the foreseeable future.

5.6 No price can be put on our love for our son. But we cannot pretend that his impairments, and our duty to assist him to live with them, have not impacted us emotionally and financially. has taken the lead role in the family to manage our son’s needs.

5.7 To do so, she had to leave her full-time career in television production, to work reduced hours in a modestly paid education support role. We love our son, but the management of his impairments has left us in a significantly less secure financial situation. Should he not qualify for adequate and essential supports, we cannot afford to maintain the level of care he needs now or in the future.

5.8 By the same token, we also recognise that ours is not and won’t be the worst story this Committee hears about regarding the impacts of these proposed changes. We represent just one example, but one that may echo across a number of participants in similar circumstances as ours.

10 Explanatory Memorandum National Disability Insurance Scheme Amendment (Securing the NDIS for future generations) Bill 2026 at p54 11 As set out in the Explanatory Memorandum id.

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Submission 2825

6.0 Reviewability of plans – ‘unanticipated’

6.1 As indicated above, this is our son’s final year of school. He attended the

autism-specific            School in             in his primary school years.

For high school, he attends , a specialist education school for students with disabilities.

6.2 So, as the inexorable end of his school life approaches, simultaneously with these reforms, we are told by proposed Section 48A(3)(b) that the only way to request a review of our son’s plan is if there is an ‘unanticipated, significant and ongoing alteration in’ his ‘education arrangements’.

6.3 We cannot say that our son finishing school is ‘unanticipated’. However, his plan has been ‘continued’ (rolled over) for several years, at the behest of NDIS. The most recent letter we received, advising of another rollover this year, stated that matters such as whether he was finishing school had been taken into consideration. Clearly, this was not the case. The letter also advised that we could contact the NDIS if our son’s circumstances change and his funded supports no longer meet his needs. At the end of this year, when our son finishes school, he will face the biggest change in his 18 years of life, a ‘major life stage change or transition, including … leaving school’ that the current NDIS legislation recognises. Yet with the proposed changes to legislation, we are faced with no legal right to ask for the essential change in supports he will soon need.

6.4 Our son’s plan has never been sufficient to meet his needs. Yet while he remained at school and his support needs didn’t change substantially, we accepted the annual rollovers. This was based on the understanding that requesting a ‘Change of Circumstance’ was always available when his support needs did change. Given the vast change about to occur in his life, a review is absolutely necessary.

6.5 To refuse a review at this critical time in our son’s life, would be outrageously unfair. To subject him, or any participant, to a system where there is no possibility of review is to make the absurd assertion that governments never make mistakes, and that a participant’s needs do not change. Denying the right to appeal or review to our country’s most vulnerable people goes against the very core of our democracy. It’s incredibly ironic, and devastating, that a fairly elected government is requesting these reforms.

6.6 The Justice & Equity Centre’s Explainer assesses this aspect of the reform as follows:

6.6.1 Reassessments are one of the few ways to respond to changes in participants’ lives. These proposed changes will leave participants with fewer options if their plan no longer meets their needs.12

12 Justice & Equity Centre ibid at p5

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Submission 2825

6.7 Our son’s support needs will be significantly more as he moves from school to adult life. We cannot escape that. In the absence of an appropriate NDIS plan, neither can we afford it. What that means for him, or us, we won’t know until it happens. But if these reforms progress as planned, it seems apparent that only a life less than ordinary lies ahead.

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Submission 2825

7.0 Securing the NDIS?

7.1 The title of this submission, An ordinary life, repeats a phrase from an NDIS

Operational Guidelines document, Reasonable and Necessary Supports. The

current document is available here13. The phrase appears multiple times in that document, one example being:

Social and economic participation are important to most people. They’re critical to living an ordinary life.

7.2 The bill before the House erases that intention; that is, to afford its disabled citizens, to the extent possible given their challenges, a life as full of promise and fulfillment as any other. Not a perfect life or even a great life. Just an ordinary life.

7.3 One NDIS participant captured the essence of some attitudes to supporting disabled people in a post on Facebook, which in part said:

There seems to be this belief that disabled people should only receive support for absolute bare survival.

Shower. Eat. Exist.14

7.4 This is not an ordinary life. The bill as presented by the Minister risks a return to the pre-NDIS dystopia, described by the then Prime Minister as follows:

A system that metes out support rationed by arbitrary budget allocations, not real human needs. A system that I have rightly compared to a lottery - a cruel lottery where even the best outcome is far from satisfactory15.

7.5 Constant references by the proponents of this bill and others to the unsustainability of the NDIS and its loss of ‘social licence’ leave us under no illusion that our submission will have much effect.

7.6 But we cannot shake the conviction that Australia is a compassionate country. So much was obvious when the NDIS was launched. This is not to say that dealing with the NDIS in the interests of our son has been easy or stress free; it hasn’t.

7.7 But we at least felt assured that our nation’s intention was to care for its disabled citizens, like our son, supporting him, so far as his significant challenges would allow, to lead, an ordinary life.

13 https://ndis.gov.au/media/7772/download?attachment 14 Olga Mahler, Facebook, 21 May 2026 at https://www.facebook.com/share/p/18uxZxmAdt/ 15 Gillard, J., National Disability Insurance Scheme Bill 2012, Second Reading Speech, House of Representatives, 29 November 2012

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Submission 2825

8.0 Recommendations

1. That the Minister or either House of Parliament refer this bill to the Joint Standing Committee on the National Disability Insurance Scheme for a genuine, good-faith Inquiry into;

a. its likely effects on commencement of its provisions upon: i. disabled people and their ability to lead ‘an ordinary life’; ii. their families and carers; iii. commercial and non-profit providers of supports, including day programs and supported employment programs; and iv. the community generally;

b. design changes to the NDIS that can both guarantee the sustainability of the scheme, and ensure that;

i. disabled people are not unfairly excluded from the scheme; and ii. participants can access the supports they need;

2. In conducting the Inquiry, the Joint Standing Committee should: a. allow sufficient time (at least 90 days) for stakeholders to prepare considered submissions and invite a broad range of stakeholders to give evidence before the Committee; and

b. have particular regard to: i. the experience and concerns of participants and their families; and ii. the experience and concerns of commercial and non-profit providers of supports, including support workers.

3. The Joint Standing Committee should publish its report by the end of 2026, but should not be precluded from seeking extra time if the Committee, the Minister, or either House of Parliament so direct.

4. The Report should contain recommendations for reforms that would further the aims in sub-paragraph 1b above.

5. The Government’s response to the report should include or foreshadow a draft bill that is made available to the public for consultation. The resulting bill should be introduced to either House no sooner than 30 days after its publication.

6. Maybe consider buying one less submarine to protect us from our most important trading partner.

7. Maybe consider taxing Australia’s natural resources so that its people benefit and Australia can afford to make disabled people equal partners in our national life.

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Submission 2825

Some closing thoughts

This is a submission to a public Inquiry about a piece of public policy that is written from the perspective of one family.

The magnificent ambition of the NDIS to bring to disabled people the possibility of an ordinary life can still be met. These reforms though, make it look like disabled people are a burden. We regard our boy as a blessing.

We thank him for the inspiration and love he gives us everyday. We thank the team we have built around him, who with thanks to the NDIS, have given him access to quality behaviour support, occupational therapy, speech therapy and yes, social and community participation.

We thank the Committee for extending the time for these submissions to be made. We note that the Second Reading of the bill has already been agreed to, as concerned stakeholders like us were preparing such submissions in the time allowed.

We plead with the Committee to at least recommend a pause for further meaningful consultation that truly encapsulates the principle ‘nothing about us without us’. Should that fail, we plead with the Senate to pass such amendments that will make this bill fairer and create something of which this nation can be proud, rather than something that disabled people fear.

We note that this submission is lodged entirely in our own personal capacities and has no connection whatever with any other third party, including our employers. This is our story and our opinion only. To the extent that Crown copyright and parliamentary privilege permits, we assert such rights including moral rights as we are able.

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