Family's experience of schizophrenia diagnosis and NDIS supports (Family or carer experience)

Submission 2717

Submission on the National Disability Insurance

Scheme Amendment (Securing the NDIS for Future

Generations) Bill 2026

From: A family of four adults, three of whom are NDIS participants (submission made anonymously)

1. Who we are and why this Bill matters to us We are a family of four adults living in regional Western Australia. Three of us are NDIS participants. The fourth is our main informal carer as well as a full-time worker. Natalie and Geoff share the primary caring role, and Natalie is the NDIS nominee for both Matthew and Cassie (pseudonyms have been used to protect privacy).

Our situation:

• Geoff (52) has no diagnosed disability but lives with multiple hernias and ADHD.

• Natalie (50) is autistic, has ADHD, Ehlers-Danlos Syndrome, POTS, Complex Regional Pain Syndrome and multiple chronic illnesses. She uses a wheelchair outdoors and a forearm walker indoors and needs assistance with showering, dressing and hair washing.

• Matthew (almost 29) is autistic (Level 3) and has schizophrenia, Generalised Anxiety Disorder, Obsessive Compulsive Disorder (OCD), a tic disorder and epilepsy. He has very low comprehension and needs someone with him at all times for emotional regulation, supervision and safety. Matthew has experienced psychosis since he was 13 years old, but was not able to access a paediatric psychiatrist until he was 15. Nine paediatric psychiatrist, including the Child and Adolescent Mental Health Service (CAMHS) refused to support him as his needs are ‘too complex’.

Matthew spent all of 2025 in persistent psychosis, but cannot be admitted to hospital to manage his psychosis. Due to his communication difficulties, Matthew requires a support person (usually Natalie) to stay in hospital with him at all times to ensure his safety and facilitate communication. Neither publicly funded or private hospitals will permit a support person to stay with a patient in a psychiatric ward, so Matthew is left with only Natalie and Geoff and NDIS funded supports. The Schizophrenia was finally diagnosed in 2025, despite Matthew having experienced psychosis for 15 years by that point.

We are currently gathering evidence to have schizophrenia added to Matthew’s list of eligible conditions to more accurately reflect his psychosocial disability. If this Bill passes, his schizophrenia would not be approved as Matthew has not been hospitalised for the psychosis due to it being inaccessible because of his other disabilities.

• Cassie (27, trans woman) is autistic, has hearing loss, ADHD and Ehlers-Danlos Syndrome. She often uses a walking stick or crutches as mobility aids.

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NOTE: The disabilities currently registered with NDIS (deemed to have met eligibility criteria) are in bold above. Matthew and Cassie were both diagnosed with ‘severe autism’ under DSM-IV as toddlers. Matthew has been reassessed under DSM-V(TR) as it is clear that NDIA do not understand the DSM-IV, and were consistently underestimating his support needs.

We do not take holidays, and spend very little on recreation. All of Geoff and Natalie’s combined income is spent on paying down our debt and meeting disability, health, mental health and physical disability-related costs not covered by the NDIS.

Our three NDIS plans are self-managed. We directly employ most of our support workers as permanent part-time staff with superannuation and leave, paying well above the award. This saves the taxpayer around $90,000 each year compared with typical agency and plan management arrangements, while giving workers decent, secure jobs.

Before the NDIS rolled out in our region, we accrued around $230,000 in extra debt trying to support our kids because the state system only really recognised disability before age 6 and after age 18.

Since joining the NDIS:

• Natalie has been able to build up to full-time work for the first time in her adult life, and has been working full time since 2023. This is aiding our family in paying down the huge additional debt accrued pre-NDIS.

• Cassie has two casual jobs and is studying at TAFE, planning to go on to university.

• Matthew, once deemed to have no work capacity by Centrelink, is now a published author.

  • We are planning to sell our current home and, at our own cost, build a

wheelchair-accessible home with a built-in granny flat for Cassie, so our family can stay together safely as we age.

Our family is a genuine NDIS success story. None of this would have been possible under the old state systems.

To be clear, we are not ‘flourishing’, we are merely functioning – not as well as families without disability do, but thanks to the NDIS, our family is not constantly in a state of crisis.

The National Disability Insurance Scheme Amendment (Securing the NDIS for Future

Generations) Bill 2026 would strip away the foundations that have enabled our family to function. It is not a minor ‘tune-up’. The Bill would change the objects and principles of the NDIS Act 2013, tighten eligibility, give the Minister of the day horrifying new powers to cut funding across whole groups of supports or groups of participants, rewrites how plans are made and renewed, and sets up a more institutional, block-funded system.

We strongly believe the Bill:

• breaches Australia’s human rights obligations, especially under the Convention on the Rights of Persons with Disabilities (UNCRPD);

• is inconsistent with key findings and directions of the Disability Royal Commission and Robodebt Royal Commission; and

  • will increase long-term costs by pushing people out of safe, family-based

arrangements into expensive group homes, hospitals and crisis services.

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2. New powers to cut supports unilaterally – section 34A The Bill inserts a new section 34A, ‘Determination reducing funding for groups of supports’. This allows the Minister, by legislative instrument, to:

• set a percentage up to 99.9% for cutting funding for a ‘group of supports’; and
• reduce the funding component amount for that group in all ‘old framework plans’ that fall within the determination.

Subsection 34A(2) says that while the determination is in force, the funding component amount in each affected plan is taken to be the reduced amount, and the ‘total funding amount’ in the plan is also taken to be reduced by the same dollar amount.

Importantly, subsection 34A(5) explicitly states that the determination can have effect even if:

• funding for a ‘reasonable and necessary’ support is less than the total cost of that support; or

• total plan funding is less than the total cost of all reasonable and necessary supports in the plan.

In plain English: the Minister can cut whole categories of supports across the Scheme, and the law will then pretend that the reduced amounts are the real plan amounts, even if those cuts mean people can no longer afford the supports the CEO has already decided they reasonably and necessarily need.

For our family, this would mean:

• Matthew’s plan, which is roughly half daily living and half social and community participation, could have one or both groups cut by a fixed percentage, regardless of his need for constant supervision and support. Under the Government’s proposal, his Core budget would be cut by 33% - despite the fact that he requires 24/7 support and his funding only covers Natalie and Geoff’s full time work hours plus travel.

• Cassie’s plan, which has a Core budget comprised entirely of social and community participation funding, would be halved overnight.

• Natalie’s daily living supports could be cut by the Minister of the day at any time even though they are essential for her to get out of bed, shower, dress and get to work.

This power breaks the basic promise of the NDIS: that plans are built around the real needs of individuals. It formalises the ability to underfund ‘reasonable and necessary’ supports in the name of cost-cutting (‘sustainability’), even when that will push people into crisis and more expensive services.

We note that the Government’s plan to savagely cut NDIS funding and remove or redirect 300,000 people from the NDIS between now and 2030 constitutes the largest ever cut to a social support program in Australia’s history. And it’s being done to the most vulnerable in our community – people with disability.

3. Automatic plan renewal and loss of genuine planning – section 50A Part 5 of Schedule 1 inserts a new section 50A under which:

• an ‘old framework plan’ is automatically renewed as a new plan immediately after its ‘end date, by force of law;

• the text of the new plan is basically the same as the old plan, except for changes to the end date and other alterations set by Ministerial legislative instruments;

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• any supports deemed ‘one off’ by the Minister or the NDIA, regardless of whether the participant has been able to access that support in the previous funding period (wait times in regional WA exceed 18-24 months for most supports);

• no new planning conversation or statement of participant supports is required (the participant is explicitly excluded from the process of changing their plan; and

• the making of the new plan does not involve any reviewable decision. The Bill also changes existing ‘reassessment dates’ into ‘end dates’, and allows the Minister, again by legislative instrument, to bring those dates forward.

For a family like ours, where circumstances change quickly (Matthew’s psychotic episodes, Natalie’s transition to wheelchair use, shifts in informal caring capacity), automatic renewals mean:

• outdated plans can roll over for another year with no proper look at what has changed;

• people like Natalie, as nominee for Matthew and Cassie, lose the chance for a meaningful planning discussion before a new plan is locked in;

• people like Matthew, who needs supported decision-making, are completely left out of decisions made about them; and

  • major changes can be made by legislative instruments that apply across all

participants or groups of participants, rather than by individual decisions we can challenge if incorrect (noting that the Administrative Review Tribunal [ART] has consistently found that NDIA did not comply with the NDIS Act in its decision-making more than 70% of the time.

This undermines the original NDIS principles of co-designed, individualised planning and makes participants passive recipients of pre-set funding envelopes.

4. Redefining ‘reasonable and necessary’ around cost and narrow impairment tests The Act currently says the NDIS exists to support independence and social and economic participation and to provide reasonable and necessary supports, including early intervention, for people with disability, in line with human rights obligations.

The Bill changes this in several ways:

4.1 Changing the object and adding ‘scheme sustainability’ principles

• Paragraph 3(d) is amended so the object is to provide NDIS supports that are reasonable and necessary ‘so far as is consistent with the financial sustainability of the scheme’.

• A new section 17B sets out ‘principles relating to scheme sustainability’, including that:

• the NDIS funds supports only for disability needs that arise directly from impairments;

• participants should be responsible for day-to-day living costs; and

• the distribution of funding should be ‘equitable’ having regard to similarities across participants.

These provisions shift the focus from individual need and rights to extreme cost-cutting and

‘equity’ as defined by the Agency.   In practice, they  will make  it easier to reclassify

disability-related costs as ‘ordinary living costs’ and to justify cutting supports on budget grounds.

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4.2 Tightening section 34 – ‘directly from impairment’ and ‘other systems’ The Bill amends section 34(1)(aa) so that funded supports must respond to disability support needs that arise ‘directly from an impairment or impairments’ that meet the disability or early intervention requirements. It also adds a new paragraph 34(1)(g) requiring that a support is not one that would be more appropriately funded by another system (such as health, housing, mental health or transport).

For our family, this is dangerous because:

• Matthew’s behaviour, safety and capacity are shaped by the interaction of autism, schizophrenia, OCD, epilepsy and environmental stress. Much of what keeps him safe (stable routines, emotional regulation support, community engagement) might inappropriately be labelled as not ‘directly’ arising from an impairment, or as ‘health’ or ‘mental health’ responsibilities.

• Natalie’s and Cassie’s functional capacity is a product of disability, chronic illness, pain, neurodivergence and fluctuating symptoms. Supports that help them maintain

  work and study may be inappropriately recast as ‘day-to-day living’ costs or

‘mainstream responsibilities’, rather than disability supports.

4.3 New value-for-money and evidence rules The Bill also inserts new subsections into section 34 about value for money and evidence requirements. The CEO must consider whether cheaper ‘comparable supports’ are available and may prioritise supports with published, generalisable research evidence over those where evidence is emerging or based on individual outcomes.

This will hit people with complex or less common conditions hardest – including those with

complex  disabilities,  autonomic  disorders,  psychosocial  disability  and  intersecting

neurodivergence – because the research base is often patchy or not a neat fit.

It will also disproportionately affect women – given that medical research was not legally required to include women until 1st January 2026 (Australia) and 1993 (USA). It will encourage the Agency to fund the cheapest, most standardised supports, rather than the ones that actually work in the real world.

5. Tightening  eligibility –  ‘all appropriate treatment’ and ‘alternative

supports’ Part 8 of Schedule 1 introduces a new concept of ‘all appropriate treatment’ for the purposes of permanence in sections 24 and 25. An impairment is not permanent or likely to be permanent unless:

• the person has undertaken all ‘appropriate treatment’;
• other treatment is unlikely to materially improve or reverse the impairment; and
• the impairment is still likely to persist for life. New section 25A then defines ‘appropriate treatment’ as evidence-based treatment that can reliably be expected to materially improve or alleviate the impact of the impairment and is ‘regularly undertaken or performed in Australia’. It also says treatment can be considered ‘appropriate’ even if, in practice, the person cannot access it due to cost, location or personal circumstances.

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Part 9 adds new ‘alternative support requirements’ (section 25B). A person can be excluded from the Scheme if their impairments are covered by other systems or if NDIS rules declare that certain supports should be provided by other service systems instead.

For our family and thousands of others, this creates several risks:

• We are currently gathering evidence to have schizophrenia added to Matthew’s list of eligible conditions to more accurately reflect his psychosocial disability. If this Bill passes, his schizophrenia would not be approved as Matthew has not been hospitalised for the psychosis due to it being inaccessible because of his other disabilities.

• Natalie and Cassie live with complex chronic conditions where treatment is often contested, expensive, experimental or only available in certain cities. Under section 25A, the Agency can still treat such options as ‘appropriate treatment’, and treat them as not permanently impaired until they have tried those options, even if it is not safe or realistic.

• As new drugs or procedures appear, there will be pressure to argue that previously permanent impairments like certain forms of epilepsy or mental illness are now ‘treatable’, threatening Matthew’s ongoing eligibility even after years on the Scheme.

• Through section 25B and related rules, whole groups of people can be shifted off the NDIS on the assumption that health, mental health, housing or other systems will step up – despite decades of evidence that they do not.

This is not ‘tightening criteria’ at the margins. The Government’s own impact analysis shows that 241,000 existing participants would be ‘exited’ by June 2031 – despite having proven repeatedly that they have permanent and significant disability (in line with the Government’s stated aim of removing or redirecting around 300,000 people from the Scheme by 2030).

6. Narrow, de-contextualised ‘functional capacity’ assessments Part 1 of Schedule 1 inserts a new section 9B defining ‘functional capacity’ as the ability to carry out an activity:

• without assistance from other people, assistive technology or modifications; and
• in a context that excludes, as far as possible, the impact of environmental and personal circumstances.

NDIS rules can then set assessment methods, thresholds and what can or cannot be taken into account, and Part 3 of Schedule 1 tightens section 32L so that needs assessments must rely on information prescribed in the rules and ignore information the rules say must not be considered.

This approach deliberately strips out the real-world context that matters most for people like us:

•  Matthew’s  ‘capacity’ cannot be meaningfully assessed without considering his

environment, family proximity, familiar workers and predictable routines. Ignoring those factors misrepresents his true support needs and puts him at risk. Further, Matthew has significant communication difficulties, primarily with comprehension. Like most autistic people, he has developed a trauma response and coping strategy of trying to guess what the other person wants to hear, rather than speaking his truth.

• Natalie’s and Cassie’s capacity fluctuates day to day, sometimes hour to hour, due to the nature of the impact of their physical disability and with pain, fatigue, autonomic symptoms, infection and mental health. A one-off, standardised assessment in a

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clinic that ignores context will overstate their capacity and understate their need for ongoing support to work, study and care.

This is at odds with contemporary disability rights approaches, which recognise disability as

the  interaction between impairments and  social  barriers, not as a  purely medical,

context-free concept.

7. Mandatory registration, block funding and thin markets Schedule 2 changes the definition of ‘NDIS provider’ and sets the groundwork for mandatory

   provider registration, stronger regulatory powers and panel-based or block-funded

arrangements, especially for plan management and ‘high-risk’ supports.

Our  family  is a  textbook example  of why  diverse,  flexible  provider  options and

self-management matter:

• We directly employ our workers. One has been with us for 14 years and another for 7 years.

• We provide permanent jobs with super and leave, which has allowed one worker to get a mortgage and support his own young family.

• Our arrangements save the Commonwealth around $90,000 per year while delivering high quality, stable, trusted support.

Moving to mandatory registration and Government-commissioned providers will:

•  make  it harder or impossible to keep our current team, especially in regional WA

where many direct workers would not or could not become registered providers;

• force us to use large agencies with high overheads and high staff turnover;

• expose Natalie, as a rape survivor, to personal care from strangers rostered in by third-party providers she did not choose; and

• increase the likelihood of Matthew being forced into a group home hours away from us, delivered by whichever provider wins a block-funded contract.

• Expose Cassie, a survivor of violence in the education system and trans person to support from strangers assigned to her care by providers that she did not choose and whose attitudes and biases may be wholly unsafe for her.

  This runs directly against the Disability Royal Commission’s concern about large,

institutional settings and its emphasis on smaller, rights-based, person-centred supports.

8. Human rights breaches – UNCRPD, (International Covenant on Civil

and Political Rights (ICCPR), International Covenant on Economic, Social

and Cultural Rights (ICESCR) The NDIS Act 2013 states that one of its objects is to give effect to Australia’s obligations under the UNCRPD and other key human rights treaties. The Explanatory Memorandum for this Bill asserts that it remains compatible with those obligations. Our lived reality and

the content of the  Bill provide strong evidence to the contrary.  This  Bill undermines

Australia’s obligations under the UNCRPD and if passed in it’s current form will breach the human rights of people with disability.

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Article 19 UNCRPD – living independently and being included in the community Article 19 requires that people with disability have the supports necessary to live in the community, choose where and with whom they live, and are not forced to live in particular arrangements.

By enabling:

• funding cuts to whole groups of supports (section 34A);
• caps on intensity, hours and worker ratios (section 32E and 32EA);
• automatic plan renewals that replicate outdated plans (section 50A); and
• a shift towards block-funded, commissioned providers and group homes (through Schedule 2), the Bill will push many people out of their homes and communities into more institutional settings.

For us, the likely outcome is that Matthew will be forced into a group home in Perth, several hours away from his family, because we would no longer be able to maintain safe 24/7 support at home. The Government cannot expect to brutally cut reasonable and necessary disability support funding to three adult members of a family of four in the one home, and expect that family to be able to maintain that same level of care. This is a clear breach of the spirit and substance of Article 19.

Article 28 UNCRPD and International Covenant on Economic, Social and Cultural Rights (ICESCR) – adequate standard of living and social protection Article 28 UNCRPD and Article 11 ICESCR recognise the right to an adequate standard of living and to social protection without discrimination.

By:

• subordinating reasonable and necessary supports to ‘financial sustainability’;
• expecting participants to absorb more ‘day-to-day living costs’; and
• allowing supports to be cut below the cost of what has been found reasonable and necessary, the Bill will push many families, including ours, back into poverty and crisis.

If Natalie loses her supports and has to leave work, and Geoff reduces his hours to fill care gaps, our family income will drop from solidly middle class to below the poverty line. We will lose the ability to self-fund accessible housing and to pay for essential medications not covered by PBS. Matthew, Cassie and Natalie will face increased risk of hospitalisation and institutionalisation.

This is a retrogressive measure that undermines social and economic rights.

Articles 12, 16 and 23 UNCRPD – legal capacity, freedom from abuse, family life

Natalie’s  role  as NDIS  nominee  for  Matthew  and  Cassie  is  part  of  supported

decision-making.   That  requires genuine  planning  conversations,  long-term  trusted

relationships and real options. Automatic plan renewal, legislative cuts and rigid assessment tools all undermine that.

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As a rape survivor, Natalie faces particular risks under a system that pushes her towards

block-funded, roster-based providers  for  intimate personal  care.   Being forced  into

arrangements where she has little or no choice over who provides that care increases the risk of re-traumatisation and abuse, contrary to Article 16 (freedom from exploitation, violence and abuse).

Cassie, who has experienced severe physical abuse must have the right to choose who can provide care. The proposed changes to the act removes this right, and increases the risk of future abuse, contrary to Article 16.

The likely separation of Matthew from his family if he has to move into a distant group home conflicts with Article 23, which requires respect for the home and the family.

Equality and non-discrimination The Bill’s changes will hit hardest those with complex, intersecting disabilities, those in regional and remote areas, and those from already disadvantaged backgrounds. That includes our family.

• The ‘directly from impairment’ test and narrow functional assessments will downplay the impact of environmental and social barriers, and the way multiple disabilities interact.

• The ‘appropriate treatment’ test assumes equal access to specialist care, which simply does not exist in regional WA.

  • Mandatory registration and block funding will shrink choice in thin markets and

undermine self-management – the very mechanism that has allowed us to build safe, sustainable support arrangements.

These are not neutral, technical changes. They have discriminatory effects on particular groups of people with disability, and negatively impact every single person with disability.

9. Inconsistency with the Disability Royal Commission The Disability Royal Commission documented systemic violence, abuse, neglect and exploitation of people with disability, especially in group homes and other institutional settings. It called for:

• a reduction in the use of segregated and institutional living arrangements;

• stronger safeguards and more rights-based, person-centred supports;

• better support for families and informal carers; and

• reforms co-designed with people with disability. This Bill moves in the opposite direction:

• It makes it easier to underfund individual supports and push people into group homes and congregate settings through block funding and mandatory registration.

• It centralises power in the hands of the Minister and the Agency via legislative instruments and automatic renewals, reducing opportunities for participants and families to shape their own supports.

• It fails to protect families like ours, who juggle paid work and high levels of informal care, from the cumulative impact of cuts and eligibility tightening.

In our case, the per-year cost of supporting the whole family under the NDIS is around $200,000, most of which is for Matthew. If supports are cut and he is forced into a group

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home, the cost to government is likely to jump to $500,000–$750,000 per year, just for Matthew alone - not counting hospital admissions or crises. This outcome is not only harmful and contrary to the Royal Commission’s findings; it is also fiscally irrational.

10. Human rights conclusion – why this Bill must not pass This Bill is described as ‘securing the NDIS for future generations’. In reality, it:

• rewrites the scheme so that budget targets trump the rights of people with disability;

• creates new legal tools to cut supports unilaterally, weaken eligibility and avoid meaningful planning and review;

• shifts the Scheme towards more institutional, block-funded models (what the NDIS was established specifically to replace) and away from genuine choice and control; and

  • does so in a way that will push thousands back into poverty, segregation and

dependence on crisis systems.

For our family, if this Bill passes:

• Natalie will lose her full-time job and be unable to afford the medications that help slow the loss of functioning.

• Geoff will have to cut his hours to provide unpaid care to three disabled family members.

• Cassie will lose the supports that allow her to work, study and build a future.

• Matthew will likely be forced into an expensive group home far from his family, at much higher cost to the Government.

• Our plan to self-fund a wheelchair-accessible home with a granny flat for Cassie will collapse.

We will move from being a clear NDIS success story – four adults contributing to their local community, employing workers on decent conditions and planning for a sustainable future – back to a family on the brink of poverty, trapped in an inaccessible house and reliant on institutional care.

This is not what the NDIS was created to do. It is not compatible with the UNCRPD, the ICCPR, the ICESCR or the findings of the Disability Royal Commission. It is not a path to

sustainability;  it  is a path back to  institutionalisation,  cost-shifting and human  rights

breaches.

Recommendations

For these reasons, we strongly urge the Parliament to reject the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

Any genuine sustainability and integrity reforms must be co-designed with people with disability and our families and must strengthen our rights and supports, not wind them back.

No further amendments to the NDIS Act 2013 without an exposure draft released for public consultation of at least three months, and a full Senate Inquiry that complies with the Government’s own Best Practice Guidelines for public consultation, which this Inquiry also breaches.

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