QOSOO
Self-management
taken away
Evidence of harm and procedural unfairness in NDIA decision-making
A call to action for the Australian Government and
the National Disability Insurance Agency
O had no chance to respond before the @) decision was made
Among affected survey respondents Self Manager Hub survey, 2026
[=) 20 recommendations for fairer NDIA decisions
October 2026
www.selfmanagerhub.org.au contact: admin@selfmanagerhub.org.au
In our own words Ys.
“| was told either | am a thief
or | am incompetent, take
your pick. It is devastating.”
Workshop participant, p. 40
“It is the trauma that the NDIS causes that makes
you unhinged, not self-management.”
Workshop participant, p. 18
“It feels like it will hang over me for the rest of my life as a NDIS participant.”
Karen, NDIS participant, p. 22
“They infer there is a black
mark against me. | do not
feel safe speaking up anymore.”
Survey respondent, p. 37
“A planner made a mistake. Rather than correct it, the
agency chose to defend the decision.”
Survey respondent, p. 36
Source: Self-management taken away, October 2026 www.selfmanagerhub.org.au
Self-management taken away _ self Manager Hub
“I found out on a Saturday that self-management had
been removed. | then went
without supports for three months.”
Survey respondent, p. 17
“It took around a year of stress and anxiety to get self
management back. | was later
told it should never have been taken away.”
Survey respondent, p. 25
“The integrity process itself caused significant harm, uncertainty and distress long
before any final decision was made.” Rick, NDIS participant, p. 23
“It made me feel shame and unsafe in a system that was supposed to support me.”
Survey respondent, p. 18
“When someone has high needs, the greatest risk is not having access to any supports.”
Survey respondent, p. 39
Acknowledgements
Self Manager Hub thanks the many people with disabilities, families and allies who contributed their time, knowledge and lived experience to this report.
We recognise that recounting difficult experiences can take considerable time, energy and emotional effort. Every contribution has helped us understand the problems and recommend systemic changes to reduce harm.
Your experiences help show the practical and personal consequences of decisions about self-management. We deeply appreciate your openness and the trust you have placed in Self Manager Hub.
We also acknowledge Aboriginal and Torres Strait Islander peoples as the Traditional Owners and Custodians of the lands and waters across Australia.
Finally, we acknowledge people with disability, our families and our allies who have fought, and continue to fight, for our rights and support needs. This report builds on that collective struggle for equality, self-determination and the right be in control of where we live, who we live with and how we are supported.
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Executive summary
About Self Manager Hub
Self Manager Hub is a disability-led organisation for people who self-manage or self-direct our supports. We provide peer support, practical information and resources, and we work to improve systems and policy so NDIS participants can exercise greater choice and control and achieve better outcomes from their NDIS supports. This report brings participant evidence together to support accountability, policy improvement and practical reform.
A legitimate integrity function is causing harm
The Scheme Integrity Branch of the NDIA has a responsibility to protect participants and public funds. Evidence gathered for this report indicates that aspects of its practice are not aligned with published NDIA policy and do not consistently provide procedural fairness. Participants report serious harm as a result.
This report brings together four sources of lived-experience evidence: Self Manager Hub’s 2026 national survey of 266 respondents; a peer workshop about the removal of self management; two consented written case studies; and the Direct Employers Network’s 2025 national survey of 73 NDIS participants and families who directly employ support workers, prepared with the support of Self Manager Hub. Together, these sources show both the decision-making failures experienced by participants and why individualised, self directed arrangements must be protected.
Fifty-four respondents reported that self-management had been removed completely, limited or refused. Of those who answered the relevant process questions, 50 of 53 said they had no chance to respond before the decision; 50 of 53 said the evidence was not explained or was insufficient; and 49 of 53 said no safeguard or support was offered first. The survey quantifies the pattern, the workshop shows how it unfolds, and the participant case studies show how harm can accumulate over months or years. The evidence indicates a systemic gap between published NDIA policy and participant experience.
Six findings require immediate attention
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Basic procedural safeguards were usually absent. Decisions were often made without notice, evidence, meaningful engagement, support or clear review rights.
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The practice described by participants did not reflect published NDIA policy. Your guide to self-management says issues should be considered in context, and responses should be supportive, educative and focused on reducing risk before self management is restricted.
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The consequences were immediate and serious. Among 52 affected respondents, 83% reported more stress or anxiety, 75% less choice and control, 71% less flexibility, 62% worse health or wellbeing and 58% delays to critical supports.
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Integrity concerns could continue to cause harm after the original matter was resolved. Participants reported old flags, unresolved records and allegations influencing later planning and support decisions.
Self-management taken away 5
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Review and correction were too slow for decisions affecting essential supports. Participants described months of uncertainty, costly escalation and no clear pathway to correct records or restore self-management.
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Direct-employment arrangements and participant-controlled entities appear to have been subjected to disproportionate scrutiny. These arrangements can be essential to safe, stable and cost-effective supports and must not be treated as integrity risks in themselves.
Recommendations at a glance
The report sets out 20 coordinated actions across five reform themes. The immediate priority is an independent review and audit of integrity-related self-management decisions, followed by accountable implementation of the reforms below.
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Accountability and transparent records. Commission an independent review of integrity-triggered self-management decisions; audit current and historical flags and decisions; correct or remove stale information; notify affected participants; and publicly report de-identified findings and the NDIA response.
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Procedural fairness and support. Establish a mandatory standard requiring accessible pre-decision notice, the exact concern and evidence, a reasonable opportunity to respond, a participant meeting, communication support, a named liaison and practical support before restriction.
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Continuity, rapid review and meaningful remedy. Protect essential supports and established relationships while concerns are examined; fast-track reviews; restore self management where process or evidence is defective; and provide correction and an apology when the NDIA makes an error.
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Recognition and fair treatment of direct employment. Formally recognise direct employment, Services for One and participant-controlled entities; provide fair claiming options; apply proportionate integrity requirements; and consider the legal obligations and governance safeguards these arrangements carry.
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Capability and disability-led partnership. Provide every self-manager with the NDIA guide and an implementation meeting; train decision-makers and integrity staff; establish a specialist restoration function; fund advocacy and peer support; and work with Self Manager Hub, the Direct Employers Network and affected participants to co design operational processes, guidance and training.
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- Why self-management matters Self-management enables people with disability and our families to choose workers, directly employ or contract staff, use unregistered providers, respond quickly to crises or changing needs, achieve better outcomes and value for money, and build essential supports for people with complex needs. These needs often cannot be met outside individualised arrangements made possible by self-managed and self-directed supports.
Figure 1. The value respondents see in self-management
Source: Self Manager Hub survey 2026. Base: 261 respondents. Multiple selections allowed.
There are many benefits to self-managing and self-directing supports which are outlined above and these benefits become unattainable when self-management is removed. Removing self-management changes who holds practical control over essential daily supports. For a person with a stable, directly employed workforce, it can immediately affect the ability to pay and retain staff. For a person relying on an unregistered provider, it can end a trusted relationship. For families already coordinating complex supports, it can cause the breakdown of carefully built support arrangements.
The survey, workshop feedback and case-study evidence show that the decision can also communicate something damaging about the person. Participants described being treated
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as if they were dishonest, incapable or unsafe, often before they had been told what concern existed. This stigma was not incidental. It was a central part of the reported harm.
“I was made to feel fraudulent, which deeply affected my mental health.” Survey respondent, answer to what happened and its impact
A fair integrity process should distinguish deliberate fraud from an honest mistake, a disputed interpretation, a provider’s conduct, an administrative error or a support need that can be addressed. The evidence in this report indicates that participants often did not experience that distinction. This does not reflect the NDIA’s guide, which recognises that most people try to do the right thing, may make mistakes and should be helped to understand and address them.
Self-management taken away 8
-
Evidence base and methodology Four lived-experience sources and the policy framework
Source What it contributes Scope
Quantitative results and written 266 total responses collected 15
Self Manager Hub accounts about removal, July to 10 August 2026. The
survey restriction or refusal of self- defined affected cohort is 54
management. respondents.
Detailed lived-experience Peer workshop held 19 June accounts about how decisions Self Manager Hub 2026. The supplied document occurred, integrity flags, workshop summarises Zoom chat and live communication, transition, discussion. review and harm.
Written accounts by Karen, First-person, longitudinal NDIS participant, and Rick, accounts of integrity processes, Participant case NDIS participant. Both communication, decision studies consented to the inclusion of making, support disruption, their experiences and to being review and continuing harm. identified as NDIS participants.
National evidence about why National survey of 73 NDIS participants and families directly participants and families employ workers, the outcomes Direct Employers conducted from October 2024 to and safeguards these Network report January 2025, prepared by the arrangements provide, their
Direct Employers Network with
governance and oversight, and support from Self Manager Hub. the policy support they require.
NDIS Act, current NDIA self The stated legal and policy Published NDIA management information, Your framework against which and legislative guide to self-management, the participant experiences can be
material NDIA Self-management Policy
considered. and review guidance.
The four lived-experience sources were analysed according to their purpose and then compared for converging patterns, differences, and the additional detail each source provides. The 2026 survey, workshop, and case studies address adverse self management decisions directly. The 2025 direct-employment report provides additional evidence about the purpose, operation, safeguards, and policy needs of participant-led employment arrangements.
How the evidence has been examined
- Survey and workshop evidence is de-identified, and all contact details have been excluded. Karen, NDIS participant, and Rick, NDIS participant, have each consented to the inclusion of their experiences in this report and to being identified by their first
Self-management taken away 9
name and as NDIS participants.. Survey and workshop contributors remain de identified.
-
Survey percentages use the question-specific denominator shown. Multi-select results can exceed 100%.
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Workshop evidence is qualitative.
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The qualitative data are individual accounts. They add depth and chronology, but do not establish prevalence and have not been independently verified against NDIA files.
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Quotes have been lightly edited for punctuation, spelling and brevity. Meaning has been preserved, and identifying detail has been removed where necessary.
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The accounts were not independently checked against NDIA case files or internal systems. The findings describe participant experience and identify matters from their experience.
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Participants used different terms, including Scheme Integrity, finance, compliance and integrity flags. The source material did not consistently identify which internal team made or influenced each decision.
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The Direct Employers Network survey is a separate voluntary convenience sample. It provides contextual evidence about direct employment but was not designed to measure the prevalence of adverse self-management decisions.
This report does not claim that the survey sample represents all NDIS participants, and it does not make a legal finding about any individual decision. The consistency of the evidence across three lived-experience sources is indicative of a pattern strong enough to require a response from government and the NDIA.
Self-management taken away 10
- The policy promise and the experience gap The NDIS Act gives participants a choice about plan management and describes circumstances in which a participant or nominee must not manage funding. The Act also requires decision-makers, when varying plans, to have regard to the principle that participants should manage their plan to the extent they wish to do so.
The NDIA’s current public information recognises that people can still self-manage when they need help to meet their responsibilities and says supports or strategies can reduce risk.
Pages 12 and 13 of the NDIA’s guide, Your Guide To Self-Management, provide important operational detail. The guide says that when investigating a payment integrity issue, the NDIA will consider whether an issue was a one-off, why it occurred, whether another person was involved, the person’s capacity with support, their documents, track record and any other relevant information. It acknowledges that most people try to do the right thing and sometimes make mistakes. It says the NDIA will help people understand mistakes and connect them with information, support and resources. Before concluding that a risk cannot be managed, it identifies options including funded skill-building, partial self management, shorter funding periods or plans, regular check-ins and informal support.
The practice described by participants does not reflect the NDIA’s published approach
The survey demonstrates that the NDIA needs to undertake a compliance audit of integrity team conduct and examine the reasons for the gap between the policy and practice. The inconsistency is stark: 94% of affected respondents report no opportunity to respond, 92% report no support or safeguards first, and only one respondent reports that evidence was fully explained. Those experiences are inconsistent with the published guide’s commitments to consider context and track record, recognise and correct mistakes, talk with the person, and use supports or safeguards to minimise risk, and take the promised educative approach.
Table 1. Published expectation compared with respondent experience
What affected survey Workshop and participant Published expectation respondents reported case-study evidence
Workshop participants described exclusion, portal changes and same-day notice.
Talk with the participant 50 of 53 said they had no Karen reports that requests to
and consider what they tell chance to respond before meet and explain evidence
the NDIA before deciding. the decision. were refused. Rick reports
repeated requests for a meeting over several months without one being facilitated.
Self-management taken away 11
What affected survey Workshop and participant Published expectation respondents reported case-study evidence
Reasons were vague or Consider whether the shifted. Karen reports a issue was a one-off, why it $21,000 debt was withdrawn 40 of 52 applicable happened, whether others without explanation or record respondents said reasons were involved, the correction. Rick reports were absent or unclear. person’s capacity with allegations and a potential Only 1 of 53 said evidence support, documents, track conflict concern were was fully explained. record and other relevant communicated while he was information. still seeking a meaningful opportunity to respond.
Recognise genuine Participants described errors mistakes and use support being treated as fraud and less to minimise risk, including restrictive safeguards not 49 of 53 said no skill-building, partial self- being tried. Rick reports no safeguards or support management, shorter participant liaison or impact were offered first. funding periods or plans, assessment while urgent check-ins and informal support needs and low core support. funding remained unresolved.
Participants relied on complaints, FOI, MPs, lawyers and the Tribunal. Karen Provide written notice, Only 4 of 53 said review reports being told relevant reasons and an accessible rights were explained decisions were not reviewable; review pathway. clearly. Rick reports months of uncertainty without a direct meeting.
Sources: NDIS Act 2013; NDIA public self-management information; NDIA Your guide to self-management, especially pages 12 and 13; NDIA Self-management Policy (June 2022); NDIA review guidance; Self Manager Hub survey, workshop and participant case study evidence. The comparison identifies an experience gap, not a finding about legal compliance in individual cases.
Self-management taken away 12
- Scale and profile of affected respondents Figure 2. Experience of or concern about removal, restriction or refusal
Source: Self Manager Hub survey 2026. Base: 258 respondents.
The survey was promoted to a community with a strong interest in self-management, so the figures are not representative of population prevalence. They do, however, show that fear of removal is widespread within this community. 217 of 258 respondents, or 84%, had either experienced an adverse decision or were worried that one might occur.
The 54 directly affected respondents
Decision Respondents
Self-management removed completely 35
Self-management limited or restricted 16
Request to self-manage refused 3
Before the adverse decision, 44 of the 54 (81%) affected respondents had been fully self managed and eight had been partly self-managed. Twenty-nine said the decision occurred more than a year earlier, 17 within the previous six months and eight within the previous 12 months. The evidence therefore includes both recent and longer-running experiences.
Thirty responses concerned a plan managed by a nominee or child representative, 21 concerned the respondent’s own plan, two concerned a family member or other person the respondent supported, and one came from a paid or professional support role.
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- A process experienced as unfair Figure 3. Procedural failures reported by affected respondents
Question-specific bases are shown in the chart. The reasons result excludes two not applicable responses. Findings are respondents’ accounts, not an audit of case files.
No meaningful opportunity to respond
50 of 53 affected respondents said the NDIA did not give them a chance to respond before self-management was removed, limited or refused. A hearing after the decision is not an adequate substitute when the change immediately affects payroll, provider access or essential supports. The guide says the NDIA will consider what the person tells it and talk with them about other plan-management options. The practice reported by 50 of 53 respondents did not reflect that approach, clearly indicating a lack of procedural fairness.
“No phone call, no email about anything. Then, out of the blue, self-management was removed.” Survey respondent, answer to what happened and its impact
Reasons and evidence were missing or unclear
Among the 52 respondents for whom the reasons question was applicable, 40 said no reason was given or the reason was unclear. Only one of 53 respondents said the evidence relied on was fully explained. Workshop and case-study evidence show why this matters: broad labels, disputed interpretations and integrity concerns were difficult or impossible to answer without the underlying facts, records and reasoning.
Workshop participants described broad labels such as “unreasonable risk”, “misuse”, “vulnerable to exploitation” and “conflict of interest” without the factual detail needed to
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understand or address the concern. In one account, the reason shifted over time. In another, an integrity flag continued to affect later decisions even after the associated debt was dropped.
“The biggest problem is they almost never say they are wrong and retract their decisions.” Workshop participant, Zoom chat
Support before restriction was rare
49 of 53 affected respondents said no safeguard or support was offered before the adverse decision. This does not reflect the guide’s risk-minimisation options, which include skill-building, partial self-management, shorter funding periods or plans, regular check-ins and informal support. The participant case studies add two practical safeguards: an early participant meeting and an impact assessment before changing management type.
“The process should be: identify, understand, educate and review. Support self management to continue wherever possible.” Survey respondent, answer to what the NDIA should do differently
Review rights were not explained
Only four of 53 respondents said review rights were explained clearly. For a time-sensitive decision, information that is unavailable, vague or communicated only after the change is not an effective safeguard.
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- Integrity processes can compound harm Workshop and case-study evidence explains how integrity concerns can move through planning, finance and review processes without a transparent bridge between the concern, the evidence, the legal test and the action taken. The mechanisms below are analytical findings drawn across sources. The full participant accounts appear in section 8.
Table 2. Recurring mechanisms of harm in integrity-related decisions
Mechanism What participants described Why it matters
A disputed purchase, duplicated It collapses the distinction claim, coding issue, overspend or between human error, Errors treated provider representation was misunderstanding, provider as fraud treated as evidence of incapacity conduct and deliberate or misuse. wrongdoing.
An integrity flag appeared to A person can remain restricted Old or influence later treatment even without a transparent finding, unexplained flag after a debt was dropped or no correction process or end date. wrongdoing was found.
Participants discovered the Decision made There is no practical opportunity change through a missing portal before to prevent harm or correct function, a new plan or a same engagement inaccurate information. day call.
Reasons changed from The participant cannot know what
Vague or vulnerability to misuse, or labels evidence to provide or what
shifting rationale such as risk and conflict of behaviour would address the
interest were not explained. concern.
Provider Participants relied on provider Integrity attention may be directed conduct marketing or billing, then carried away from the entity best placed displaced onto the integrity consequence to prevent recurrence. participant themselves.
Participants feared that challenging a decision, People stop asking questions,
Chilling effect complaining or seeking review using funding flexibly or raising
would trigger more scrutiny or legitimate concerns. debt action.
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Integrity records must be reviewable and correctable
Across the workshop and the case study of Karen, NDIS participant, a resolved or withdrawn matter was reported to have continued influencing later decisions. The governance problem is not only the original allegation. It is the absence of a transparent record, review date, correction process and automatic reconsideration of restrictions when the underlying concern is resolved. An integrity flag that operates without those safeguards can become an undisclosed adverse finding.
“The unresolved reputational damage is appalling.” Workshop participant, live discussion
Honest error needs a different response from fraud
The evidence distinguishes deliberate fraud from duplicate claims, coding or date errors, disputed interpretations, changing guidance and provider conduct. Participants asked for a proportionate response that first establishes what occurred, gives the person a chance to explain, and uses education or targeted safeguards where the concern can be corrected. That is consistent with the guide’s recognition that most people try to do the right thing and may need help to understand a mistake.
“Heaven forbid we just be human and make genuine, non-malicious, unintentional mistakes.” Workshop participant, Zoom chat
“Assess the person’s overall capacity and track record, not one administrative mistake.” Survey respondent, answer to what the NDIA should do differently
Participant-controlled entities must not be treated as risk indicators
The survey, workshop and participant case studies raise a specific concern about participants who directly employ workers through participant- or family-governed entities. These entities can be necessary to meet employment, payroll, insurance, governance and continuity obligations for highly individualised supports. Yet participants described their structures as being labelled a conflict of interest or possible misuse, followed by entity bank-account audits and adverse self-management decisions.
This concern is reinforced by the Direct Employers Network’s 2025 national survey of 73 NDIS participants and families, prepared with the support of Self Manager Hub. Key findings were:
-
71% chose direct employment because they could not find suitable or consistent support from standard providers;
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82% reported greater control, 78% greater consistency and 71% improved safety and trust compared with provider-based supports; and
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65% reported additional oversight, including governance boards, circles of support, accountants, bookkeepers, plan managers and team leaders.
The report recommends formal recognition of direct employment as an essential safeguard, fair and workable claiming options, proportionate integrity scrutiny, practical co
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designed guidance, staff training and peer-led support. These recommendations are reflected in this report.
Source: Direct Employers Network with Self Manager Hub, Experiences and Learnings
from NDIS Participants and Families who use Direct Employment (2025).
Participant complaints must not result in retaliation
Some participants believed complaints, Tribunal proceedings or advocacy had triggered or intensified adverse action. Karen, NDIS participant, has raised a specific concern about the timing and scope of an audit involving her Support Coordinator after she spoke publicly and sought restoration of self-management. This has not been independently verified and is not presented as a finding of retaliation. It is a serious governance concern that requires independent examination because fear of adverse consequences can deter people from using complaints and review pathways.
“I now keep my head down and do not use my funding flexibly. I also avoid communicating with the NDIA so as not to draw attention to myself.” Survey respondent, answer to what happened and its impact
Self-management taken away 18
- What removal does in real life Figure 4. Reported impacts of losing, being refused or having self-management restricted
Source: Self Manager Hub survey 2026. Base: 52 affected respondents who answered. Multiple selections allowed.
Essential support is interrupted
30 of 52 respondents reported delays in supports and 20 reported losing support workers. Workshop and case-study evidence describes the practical pathways to that harm: payroll pressure, delayed invoices, critically low core funding, plan-manager withdrawal and uncertainty about whether established care can continue. These impacts begin before a final outcome and require continuity protections from the first integrity contact.
“I found out on a Saturday that self-management had been removed. I then went without supports for three months.” Survey respondent, answer to what happened and its impact
Self-management taken away 19
Trusted relationships and tailored workforces lost
22 respondents said they could no longer use preferred providers. Self-management often supports arrangements that are hard to replicate through registered or large providers, including long-term workers, rural workforces, direct employees and clinicians chosen for safety, reliability and cultural fit. Once a worker leaves, restoration of self-management may be too late to restore the relationship.
“All long-term support workers were lost without warning. The distress had lasting health impacts.” Survey respondent, answer to what happened and its impact
Costs rise while control falls
27 respondents said supports became more expensive and 24 reported more unpaid work for family members or carers. Participants described plan-management fees, higher provider charges, invoice disputes, repeated emails, and hours spent on complaints and review. These burdens sit alongside the survey’s broader finding that 82% of respondents valued self-management because it helped funding go further.
“My plan now costs more for plan management and I receive less flexible support.” Survey respondent, answer to what happened and its impact
Health, dignity and trust are damaged
43 of 52 affected respondents reported more stress or anxiety and 32 reported worse health or wellbeing. Written accounts referred to re-traumatisation, burnout, depression, suicidal ideation, shame, sleeplessness and feeling unsafe. Karen and Rick describe distress extending over months or years and affecting family members as well as support arrangements. The severity of these accounts requires trauma-responsive practice and active monitoring of wellbeing and continuity risks.
“It is the trauma that the NDIS causes that makes you unhinged, not self-management.” Workshop participant, Zoom chat
“It made me feel shame and unsafe in a system that was supposed to support me.” Survey respondent, answer to what happened and its impact
Fear changes behaviour even after restoration
Some people regained self-management but did not regain confidence. Respondents described restricting purchases to the bare minimum, avoiding flexibility and ceasing communication with the NDIA. This chilling effect undermines the purpose of self management and can lead to underuse of critical supports, delayed help and less effective plans.
“My trust in the system’s fairness has completely eroded.” Survey respondent, answer to what happened and its impact
Self-management taken away 20
- Participant accounts and case studies This section presents four de-identified workshop accounts and two written participant case studies. The workshop accounts show distinct decision pathways. The case studies provide longer timelines and show how integrity processes can affect later decisions, essential supports, family life and trust over time.
Account 1. An integrity flag outlived the investigation
A nominee who directly employed support workers was referred to Scheme Integrity after the planner questioned the arrangement. The participant reported that no wrongdoing was found and a large debt was eventually dropped. The associated flag was not removed. Months later, a plan rolled over into plan management with same-day notice. The nominee had to organise payroll immediately before a public holiday and struggled to find a plan manager willing to support direct employment. A later planner initially considered restoring self-management, then reversed position after seeing the old flag. The reason eventually given was an unexplained “conflict of interest”.
What this account shows
The NDIA’s guide says the Agency will consider the person’s history, why an issue occurred, whether others were involved and all relevant information before deciding. This account shows a resolved matter continuing like an undisclosed adverse finding, with no transparent correction or expiry and no clear link between the integrity flag, current evidence and the statutory test. The practice described does not reflect the guide.
Account 2. Portal access disappeared without warning
A family had self-managed for years with no reported issues. A nominee discovered the plan was changed from self-managed only when the payment function disappeared from the portal. An invoice took more than a month to be paid, causing financial hardship. The review response referred to “unreasonable risk” with no explanation of what risk(s) the delegate was concerned about. A trusted clinician’s registration status was later raised, even though changing clinicians was described as unsafe. The family’s trust in the NDIA was deeply damaged.
“The family is traumatised and no longer trusts the NDIA.” Workshop evidence summary, live discussion
What this account shows
The guide says risk should be assessed using the person’s individual circumstances, history, capacity with support and available safeguards, and that the NDIA will talk with the person about plan management options. This account instead describes abrupt loss of portal access, vague reasons, delayed payment and no safe transition for a trusted clinician.
Self-management taken away 21
Account 3. The reason shifted and the participant was excluded
A participant described being excluded from their own plan reassessment while Core funding was sharply reduced - against professional advice. Mixed information about managing the reduced budget contributed to overspending. The original reason for removing self-management was described as vulnerability to exploitation. During review, the reason shifted to misuse linked to the overspend period. Funding was later increased toward the level the participant’s evidence said was needed, but the NDIA did not explain what the participant could do to address the funding management decision.
“I was treated like I’m naughty when I didn’t do anything.” Workshop participant, live discussion
What this account shows
The guide says the NDIA will consider why spending occurred, whether another person was involved, the participant’s capacity with support and all relevant information, and will use supports or safeguards to minimise risk where possible. This account instead describes exclusion from the reassessment process, reasons that shifted after the decision, and no clear dispute resolution pathway.
Account 4. A disputed claim created a chilling effect
A participant submitted a claim for a therapy promoted by a provider as NDIS-related. A later claim was rejected without the participant noticing, then resubmitted under a different category in the belief that the issue was coding. After time away, the participant received multiple conflicting letters generated on the same day, including a change to agency management. The participant reported being warned that formally contesting the matter could lead the NDIA to pursue an earlier payment as a debt. This discouraged attempts to resolve the issue.
What this account shows
The guide recognises that most people try to do the right thing and sometimes make mistakes, and says the NDIA will help them understand and correct errors. This account shows a disputed, provider-influenced claim leading to conflicting decisions and a warning that discouraged review. The practice described does not reflect the guide’s supportive and proportionate approach.
Participant case studies: integrity processes over time
Consent and identification
Karen, NDIS participant, and Rick, NDIS participant, have each consented to the inclusion of their experiences in this report and to being identified as NDIS participants. Their surnames have been omitted. Survey and workshop contributors remain de-identified.
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Case study 1
Karen, NDIS participant
Four years, a withdrawn debt, an uncorrected record and self-management still not restored
In early 2022, Karen, NDIS participant, experienced a four-year sequence of compliance actions after a planner incorrectly advised her that directly employing support workers was fraudulent. Karen was told “participants aren’t allowed ABNs” and “directly employing workers is profiting from your plan.” When she explained that direct employment is required under ATO and Fair Work laws, and provided documentation from the NDIA’s own website, she was told that “only the NDIA Act mattered.” Rather than engaging with the referenced information she provided, the planner referred her to Scheme Integrity. This single error initiated a chain of compliance actions that have escalated significantly.
Karen reports that from that moment, she was treated as though she had committed fraud or misuse, despite the issue originating from a simple data-entry error on the NDIS portal. She was not offered a meeting, an explanation, or any education about what she had supposedly done wrong. This contradicts the NDIA’s own self-management guidance, which states that compliance processes should be “supportive and educative” and recognise that mistakes can happen. This is consistent with our survey results.
Over the next 18 months, Karen received a $21,000 debt notice stating the decision was not reviewable, was removed from self-management, and her plan manager was audited. When her plan manager withdrew service provision in 2025 due to further audit concerns, Karen temporarily lost access to her plan funds. She reports that several plan managers refused to take her on because of similar audit fears.
“In recent months, we’ve seen an increase in compliance activity around arrangements where participants directly engage their own service providers. While we’re unable to share the specific details of those matters, we want to emphasise that this decision is not a reflection of Karen as a participant or customer. It’s a proactive step to ensure we continue to meet our professional obligations under the scheme.” The participant’s plan manager, correspondence to Karen, NDIS participant
When Scheme Integrity reviewed her claims, Karen alarmingly reports that they applied rules that did not exist, policies written after the supports were purchased, and interpretations inconsistent with NDIA policy. Examples include:
-
being criticised for not using portal claim categories that did not, and still do not, exist
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being told she breached policies written after her supports were purchased
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invented quantity limits (e.g., “two drinking aids allowed, three is misuse”)
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incorrect STA interpretations (e.g., “it is all inclusive support therefore no other support can be delivered at the same time”)
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debts raised for “duplication of supports” where supports were entirely different Karen’s examples describe interpretations that she considers incorrect, inconsistent and unsupported by NDIS rules. She reports that the resulting Scheme Integrity actions caused severe consequences, including loss of access to plan funds and a substantial debt, while
Self-management taken away 23
participants were expected to navigate complex and changing policy and portal requirements without equivalent support or explanation.
Karen received written advice from the Agency that the outcome of the Scheme Integrity audit, including debts raised, was “non-reviewable”.
After engaging lawyers in 2023 and 2024, Karen received a brief email stating the debt would not be pursued. She received no explanation, apology, correction of the record or restoration of self-management. She describes an unnecessary ‘David and Goliath’ battle that required legal support, a burden she believes many participants could not sustain.
Karen asked for self-management at her plan review in 2025 but was declined.
“Self-Management declined. It has been identified that Karen has her own support company that provides paid supports to her, due to the conflict of interest in relation to Karen paying her own support, there is unreasonable risk to the participants and self-management has been declined” NDIA delegate
Karen’s account raises a serious concern about whether the decision-makers understood direct-employment arrangements. Direct employment and control over supports are recognised features of NDIS self-management. Karen remains concerned that internal flags or risk ratings may still exist on her file.
Her case raises serious systemic questions that were echoed in our survey responses:
-
Why are participants treated as guilty from the start, without any opportunity to discuss complex matters such as employment law?
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Why do compliance processes appear to default to debts and removal of self- management, without the required steps of education and support?
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Why are participants being audited against rules that did not exist, rules invented by staff, or portal requirements that are technically impossible?
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How can significant debts be labelled non-reviewable without a single conversation or any checks and balances?
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Where is the pathway for participants to clear their name when a debt is withdrawn? “It feels like it will hang over me for the rest of my life as a NDIS participant.” Karen, NDIS participant, consented case study
What this case study shows
Withdrawal of a debt does not repair the harm unless the NDIA also corrects the record, reconsiders related restrictions and explains the outcome. The account also exposes a practice gap concerning a lack of understanding by Integrity Branch staff of direct employment and the legal obligations of directly employing staff. Karen’s experience of repeated investigations by Scheme Integrity raises the concerning possibility that individuals are punished for speaking out and challenging decisions.
Self-management taken away 24
Case study 2
Rick, NDIS participant
Months without a meaningful conversation while essential supports were at stake
Rick, NDIS participant, is a long-term NDIS participant with significant physical disability who had successfully self-managed for many years. He reports that, in December 2025, the Frontline Integrity Planning Team advised him of alleged non-compliant claims, and a conflict of interest because he was a director of a participant-controlled not-for-profit organisation he established to administer his supports as well as others in similar circumstances. As a result, he had self-management taken away.
Rick repeatedly requested an online, telephone or face-to-face meeting so he could understand and answer the concerns. He says no meeting or telephone contact was facilitated over several months, while communications indicated that agency management remained the intended outcome. The decision had been made without any genuine engagement and without understanding his individual needs and circumstances.
As a result of being switched to agency managed and being required to use a registered provider, Rick’s costs increased significantly, but his funding was not increased to meet those additional costs. His funding was reduced despite clinical evidence indicating that increased funding was required.
He reports that Core funding became critically low while he awaited the outcome of Internal Review. The prolonged uncertainty affected his wellbeing, independence, established workforce and family, who faced greater pressure to cover gaps in formal support. At one point, he was planning for a social hospital admission because his support needs could not be absorbed by informal supports for a prolonged period.
“The integrity process itself caused significant harm, uncertainty and distress long before any final decision was made.” Rick, NDIS participant, consented case study
What this case study shows
NDIA Scheme Integrity appears to lack an understanding of the importance and legitimacy of self-directed support, including Services for One and direct-employment arrangements that enable participants and families to administer supports effectively and cost-effectively. The process described also lacked procedural fairness and a supportive conversation to understand the participant’s arrangements before resorting to punitive measures.
What the 2026 removal-focused evidence shows together
System signal Evidence across the 2026 removal-focused sources
Survey: 50 of 53 reported no chance to respond. Decision before Qualitative evidence: Portal changes, same-day notice and engagement repeated meeting requests without direct discussion show how consultation can become retrospective.
Self-management taken away 25
System signal Evidence across the 2026 removal-focused sources
Survey: 40 of 52 applicable respondents said reasons were absent or unclear; only 1 of 53 said evidence was fully explained. Reasons not Qualitative evidence: Broad or shifting labels, disputed answerable interpretations and unexplained conflicts or flags left people unable to understand what evidence would address the concern.
Survey: 49 of 53 reported no safeguards or support before restriction. Support not tried Qualitative evidence: Educative approach, partial self first management, impact assessment, a participant liaison and safe transition were not evident in any of the accounts.
Survey: Support delays, lost workers, higher costs, poorer wellbeing and worse outcomes were common. Harm begins Qualitative evidence: The accounts describe payroll pressure, loss immediately of plan access, inadequate Core funding to manage increased cost of registered providers, family stress and uncertainty about essential care before review was complete.
Self-management taken away 26
- Review and remedy 33 of 53 affected respondents had already asked for self-management to be returned or approved, and eight planned to ask. People often used more than one pathway. Among 44 respondents who described a pathway, 18 selected an NDIA complaint, 17 internal review, 10 external review and 10 a complaint to another body. Others described plan variation, reassessment, MPs and legal or advocacy support.
Figure 5. What had happened by the time of the survey
Source: Self Manager Hub survey 2026. Base: 45 affected respondents who answered the outcome question.
Sixteen respondents reported that self-management was returned or approved and two reported a partial return. This shows that adverse decisions can be overturned and warrants an audit of whether the original decisions reflected the NDIA’s policy and guide, how many people experienced avoidable harm before correction, and what happened to those who could not sustain a complaint or review.
“It took around a year of stress and anxiety to get self-management back. I was later told it should never have been taken away.” Survey respondent, answer to what happened and its impact
The burden of evidence sits with the person harmed
Participants described having to request records, use freedom of information, contact elected representatives, obtain advocacy or legal support, complain repeatedly or commence Tribunal proceedings simply to understand or correct a decision. The participant case studies show that even sustained escalation may not produce a timely meeting, a corrected record or restored self-management. For people already managing disability, support breakdown and family responsibilities, this burden can make review
Self-management taken away 27
inaccessible. Across the evidence, participants reported receiving insufficient evidence or explanation for decisions to raise a debt or change their funding-management type.
“It is so isolating when they make you feel like you are the only person fighting their decisions.” Workshop participant, Zoom chat
Urgent decisions need an urgent remedy
A review pathway measured in weeks or months is grossly inadequate when the decision affects staff payroll, access to personal care, a trusted clinician or a person’s ability to leave home. Self-managers face potential legal repercussions through other systems for these decisions. The remedy must include a rapid triage pathway, interim continuity arrangements and authority to restore self-management immediately where the process or evidence is defective.
What an effective remedy must achieve
Purpose Required response
Protect direct employer obligations to pay their staff, maintain Stop immediate essential supports and existing provider relationships while the harm review is completed.
Make the case Give the participant the exact reasons, evidence, decision record, answerable authority and any integrity information relied on.
Correct the Restore self-management where appropriate, remove inaccurate decision and the integrity flags, and notify every downstream decision-maker who record received the error.
Repair the Provide open disclosure, reimburse reasonable transition costs consequences and acknowledge the impact on the participant and family.
Review the decision against the Self-management Policy and Your Test practice guide to self-management, record any departure and address the against policy systemic cause.
Check the self-manager’s record before taking any punitive action for a claiming error or errors. Has the NDIA provided Check the record implementation support? Is there any record of the self-manager before taking being previously warned about impermissible claims? If not, punitive action provide the promised educative approach, issue a warning and monitor.
Require NDIA planners to provide Your guide to self-management Set self-managers to every participant approved to self-manage, and ensure that a up to succeed plan implementation meeting is provided to explain the self manager’s obligations, rights and responsibilities.
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- Recommendations: What the Government and the NDIA must do
These 20 recommendations respond directly to the procedural failures, disruption to essential supports and gap between published policy and practice documented in this report. Together, they set out a coordinated reform program for the Australian Government and the NDIA.
The immediate priority
Stop avoidable harm while integrity concerns are investigated. Self-management should not be removed before the participant has received notice, evidence, a meaningful chance to respond and the opportunity to learn and improve. Pages 12 and 13 of the NDIA guide already describe a policy commitment to a supportive and educative approach. The immediate priority is to make integrity practice reflect those commitments.
Twenty recommendations across five reform themes
Responsibility for each recommendation is identified below.
Theme 1. Accountability, independent oversight and transparent records
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Australian Government: Commission an independent review of NDIA decisions that remove, restrict or refuse self-management, with specific examination of Payment Integrity, Scheme Integrity and other integrity-triggered pathways. Publish the review findings, recommendations and formal NDIA response.
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Australian Government: Require the NDIA to audit active and historical integrity flags, identify matters that were resolved, unsupported or should have expired, remove stale or inaccurate flags, and notify affected participants of any correction. De-identified results of the audit should be publicly reported.
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NDIA: Make integrity flags and other adverse integrity information visible to participants. Provide the reasons, evidence, date of entry, responsible team, review date and expiry date, together with a clear process for challenging and correcting information that is inaccurate or no longer relevant.
Theme 2. Procedural fairness and support before restriction
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Australian Government: Establish a mandatory procedural fairness and continuity standard for decisions that remove, restrict or refuse self-management. This should be given effect through legislation, rules, ministerial direction or enforceable operational policy, as appropriate.
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NDIA: Introduce a mandatory, accessible pre-decision notice stating the exact concern, the evidence relied upon, the statutory and policy basis, the decision-maker and how the participant can respond.
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NDIA: Give participants a reasonable opportunity to respond (30 day minimum), facilitate a meeting, provide appropriate communication support and appoint a named, directly contactable liaison.
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- NDIA: Offer practical support before restricting self-management. This should include education, budget tools, partial self-management, shorter funding periods, regular check-ins, support coordination, nominee support or targeted record-keeping assistance. If the NDIA decides that these measures are insufficient, it should explain why in writing.
Theme 3. Continuity of support, urgent review and meaningful remedy
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NDIA: Protect support continuity for participants. Before any change takes effect, assess the likely impact on essential supports, participant safety and wellbeing, obligations toward support staff and established support relationships. Options and a safe transition must be considered with the participant.
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NDIA: Fast-track the review of any decision that disrupts essential supports. Restore self-management immediately where required notice, reasons, evidence, procedural fairness or delegation requirements were not met.
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NDIA: Provide open disclosure when the Agency makes an error. This should include a written correction, an apology, reimbursement of reasonable transition costs and confirmation that inaccurate flags, allegations or records have been removed from all relevant systems.
Theme 4. Recognition and fair treatment of direct-employment arrangements
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Australian Government and NDIA: Formally recognise in policy, operational guidance, staff training and public communications that direct employment, Services for One and participant- or family-governed entities are legitimate self-directed support arrangements. For some participants, especially participants with high and complex needs, these arrangements are essential arrangements developed in response to provider market failure, service exclusion, workforce instability and risk.
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NDIA: Ensure that decision-makers recognise all employment, taxation, superannuation, workplace health and safety, insurance and corporate obligations applying to direct employers. Participants must comply with all applicable laws, not only the NDIS Act. Where a worker relationship is legally an employment relationship, a participant will need to directly employ that worker rather than engage them as a contractor. Compliance with these obligations must not be characterised as misuse, profit or conflict of interest.
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NDIA: Publish a nationally consistent policy confirming fair and workable claiming options for participants who directly employ workers. The framework should recognise:
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an all-inclusive operational claim using the applicable NDIS benchmark rate;
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an all-inclusive operational claim using an individually calculated rate below the benchmark;
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separate claims for individual employment and operating costs; or
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claims administered through a partner provider. The framework should recognise reasonable employment and operating costs, including wages, leave entitlements, superannuation, insurance, recruitment, training, equipment, software, administration expenses, bookkeeping, human resources, governance and regulatory compliance.
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- allow direct employers to plan for and meet future employment liabilities.
- allow direct employers to use any savings for support needs not covered by the NDIS. The framework must not treat participant- and family-led entities less favourably than provider-led entities.
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NDIA: Apply consistent, evidence-based and proportionate integrity requirements to direct-employment arrangements. Direct employers should demonstrate that supports were delivered to the participant and that NDIS funding was used for those supports. However, the internal operational expenditure of participant-controlled entities should not be scrutinised more intrusively than comparable provider arrangements unless there is specific evidence of misuse. The existence of an entity, a governance relationship with the participant or the retention of funds for legitimate future liabilities must not be treated as an integrity risk in itself.
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NDIA: Recognise the governance and oversight already operating within many direct- employment arrangements. This may include participant or family governance, microboards, circles of support, accountants, bookkeepers, payroll services, plan managers, support coordinators and team leaders. Integrity assessments should consider the actual governance, safeguards and accountability mechanisms in place rather than assuming that participant control creates an unmanaged conflict of interest.
Theme 5. Capability, practical guidance and disability-led partnership
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NDIA: Ensure every self-manager receives Your Guide To Self-Management and an implementation meeting explaining their rights, responsibilities, legal obligations, compliance requirements and available supports.
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NDIA: Provide mandatory training for planners, Local Area Coordinators, payment officers and integrity staff so they give accurate and consistent advice about self management, direct employment, Services for One, participant-controlled entities and the use of non-registered providers.
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NDIA: Establish a specialist self-management decision and restoration function within Payment Integrity and other relevant integrity teams. It must understand direct employment, Services for One, participant-controlled entities, non-registered-provider arrangements and the consequences of forced provider changes.
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Australian Government: Fund independent advocacy, disability-led peer support and practical resources for people who self-manage or self-direct their supports, including participants who directly employ workers. This support should build understanding of integrity processes, employment, claiming and compliance requirements.
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Australian Government and NDIA: Work collaboratively with and resource Self Manager Hub, the Direct Employers Network and people who self-manage or self direct their supports, including those affected by adverse decisions, to:
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develop an NDIA-endorsed direct-employment toolkit providing integrated guidance across NDIS, employment, taxation, superannuation, insurance, workplace health and safety, record-keeping and governance obligations;
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provide learning opportunities for people at different stages of establishing and operating direct-employment arrangements;
Self-management taken away 31
-
deliver peer support, mentoring and lived-experience guidance;
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co-design and publish integrity and self-management operational processes and staff training; and
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resolve the systemic policy and practice issues identified in this report. Self-management taken away 32
- A minimum fair-process standard The following standard translates participant evidence and the NDIA’s own published commitments into a practical decision pathway. It draws particularly on pages 12 and 13 of Your guide to self-management. The issue is not an absence of policy. It is the need for accountable and consistent implementation across planning and Integrity functions.
Table 3. Minimum standard before self-management is removed, restricted or refused
Stage Minimum requirement
Check the source, accuracy, age and relevance of the
- Verify the concern information. Confirm whether the issue relates to the participant, nominee, provider, NDIA system or another party.
Distinguish suspected deliberate fraud from honest error, changed guidance, provider conduct, budget pressure, support
- Classify the issue need or administrative mistake. Keep the Integrity inquiry separate from assessment of current disability support needs.
State the proposed action, reasons, evidence, legal basis,
- Give accessible decision-maker, 30 day minimum response deadline and notice available support in the person’s preferred communication format.
Provide a real opportunity to respond, submit records, correct
- Hear the person factual error, explain context and involve a supporter, advocate or allied health professional.
Wherever possible, provide education, peer support, coaching, tools and information, plan management, partial self
- Education and management, check-ins, shorter funding periods or other support first safeguards. When applying restrictions, record why less restrictive options would or would not manage the identified risk, and provide this information to the self-manager.
A properly authorised decision-maker should consider the full
- Make an track record, individual circumstances and participant response, independent decision not rely on an unexplained flag.
Assess the likely impact on essential supports, workforce, informal supports and wellbeing. If a change is absolutely
- Protect continuity necessary, agree to a transition plan with the self-manager that protects payroll, support relationships and invoices already incurred. Urgent support decisions must continue independently.
Explain review rights clearly, provide a named contact, fast-track
- Provide rapid urgent cases and correct records, flags and costs when the review and correction decision is wrong.
“Always consult before making any changes. Lived experience takes absolute priority.” Survey respondent, answer to what the NDIA should do differently
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Conclusion
The evidence in this report is not a dispute with the need for Scheme Integrity. People with disability and our families also want fraud, exploitation and misuse addressed. The central concern is that the practice described by participants does not reflect the NDIA’s published self-management policy and guide. Participants experienced restrictive decisions being made first and explanations, support or review coming much later, or largely absent entirely.
The 2026 survey quantifies a pattern of missing safeguards and serious harm. The workshop evidence explains the decision pathways behind that pattern. The consented case studies show how the consequences can accumulate over months or years, affecting records, essential care, direct employment, family supports, wellbeing and trust. The Direct Employers Network report explains why direct-employment arrangements are established, the safeguards and outcomes they provide, and the policy support they require. Each source has limits, but their convergence requires a systemic response.
The Australian Government and the NDIA can act now. The 20 actions in this report provide a coordinated reform program across five themes: accountability and transparent records; procedural fairness and support before restriction; continuity, urgent review and meaningful remedy; recognition and fair treatment of direct-employment arrangements; and capability, practical guidance and disability-led partnership. These reforms should be implemented and monitored collaboratively with Self Manager Hub, our Direct Employers Network and with people with disability and our families.
What needs to change
Establish clear accountability, independent audit and ongoing oversight of Payment Integrity, Scheme Integrity and other NDIA integrity functions so their practice reflects the NDIA’s Self-management Policy and Your Guide to Self-Management. Audit current and historical decisions and integrity flags, correct defective decisions and records, and restore self-management where the evidence or process does not support restriction. Formally recognise legitimate direct-employment arrangements, apply fair claiming and proportionate integrity requirements, and work collaboratively with Self Manager Hub, the Direct Employers Network and affected participants to resolve the systemic issues identified in this report.
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Appendix A. Detailed survey results
This appendix presents all principal closed-response data relevant to removal, restriction or refusal of self-management. Percentages use the denominator shown and may not total 100% because of rounding.
Table A1. Experience of or concern about an adverse self-management decision
Response Count Share
Self-management removed completely 35 13.6%
Self-management limited or restricted 16 6.2%
Request to self-manage refused 3 1.2%
No, but worried this may happen 163 63.2%
No, not happened and not worried 40 15.5%
Not sure 1 0.4%
Base: 258 respondents.
Table A2. Profile of the 54 affected respondents
Measure Category Count Share
Decision Removed completely 35 64.8%
Decision Limited or restricted 16 29.6%
Decision Request refused 3 5.6%
Timing More than a year ago 29 53.7%
Timing In the last 6 months 17 31.5%
Timing In the last 12 months 8 14.8%
Management
Fully self-managed 44 81.5%
before
Management
Partly self-managed 8 14.8%
before
Management
Plan-managed 1 1.9%
before
Management
Agency-managed 1 1.9%
before
Base: 54 affected respondents.
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Table A3. Decision process reported by affected respondents
Question Response distribution Interpretation
40 of 52 applicable respondents, No 27; unclear 13; yes 12; Clear reasons 76.9%, said reasons were absent or not applicable 2 unclear.
Evidence No 38; insufficient 12; not Only 1 of 53 said evidence was fully
explained sure 2; yes 1 explained.
Chance to 50 of 53, 94.3%, said they had no No 50; yes 2; not sure 1 respond chance to respond.
Safeguards or 49 of 53, 92.5%, said none were No 49; yes 2; not sure 2 support offered.
No 35; yes but unclear 9; not Only 4 of 53, 7.5%, said rights were Review rights sure 5; yes clearly 4 explained clearly.
Question-specific base: 53, except clear reasons where two not-applicable responses are excluded from the 52 applicable responses.
Table A4. Impacts reported by affected respondents
Impact Count Share
More stress or anxiety 43 82.7%
Less choice and control 39 75.0%
Less flexibility 37 71.2%
Worse health or wellbeing 32 61.5%
Delays in supports 30 57.7%
Less independence 28 53.8%
Supports became more expensive 27 51.9%
More unpaid work for family members or carers 24 46.2%
Could not use preferred providers 22 42.3%
Lost support workers 20 38.5%
Less community participation 17 32.7%
No major impact 2 3.8%
Base: 52 affected respondents who answered. Multiple selections allowed.
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Table A5. Seeking return or approval and pathways used
Measure Response Count Share
Asked or plans to
Already asked 33 62.3%
ask
Asked or plans to
Plans to ask 8 15.1%
ask
Asked or plans to
No 8 15.1%
ask
Asked or plans to
Not sure 4 7.5%
ask
Pathway Complaint to NDIA 18 40.9%
Pathway Internal review 17 38.6%
Pathway External review 10 22.7%
Pathway Complaint to another body 10 22.7%
Pathway Plan variation request 5 11.4%
Pathway Scheduled plan reassessment 5 11.4%
Pathway Unscheduled plan reassessment 3 6.8%
Base for asked/plans to ask: 53. Base for pathways: 44; multiple selections allowed. Custom pathways are discussed in the body.
Table A6. Outcome at the time of the survey
Outcome Count Share
Self-management returned or approved 16 35.6%
Request refused 10 22.2%
Still waiting for a decision 8 17.8%
Had not asked yet 8 17.8%
Self-management partly returned or approved 2 4.4%
Not sure 1 2.2%
Base: 45 affected respondents who answered.
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Appendix B. Participant voices by evidence question
This appendix provides a broader selection of de-identified qualitative evidence. It is organised by the question or workshop topic to which the evidence relates, so the reader can distinguish descriptions of what happened from suggestions about what should change.
Quotes are not frequency counts. They show the range, severity and mechanisms of experience. Minor spelling and punctuation changes have been made for readability. Identifying details have been removed.
B1. Survey question: “In your own words, what happened and what impact did it have?”
Non-blank responses: 51. The following quotes relate to the survey’s conditional section about removal, restriction or refusal of self-management.
No warning or consultation
“No phone call, no email about anything. Then, out of the blue, self-management was removed.” Survey respondent, answer to what happened and its impact
“Self-management was removed, funding was lost, and there was no explanation or offer of a meeting before the decision.” Survey respondent, answer to what happened and its impact
“I found out on a Saturday that self-management had been removed. I then went without supports for three months.” Survey respondent, answer to what happened and its impact
“The plan-management type changed without any mention of it at all.” Survey respondent, answer to what happened and its impact
Administrative and system error
“It was an administrative or computer-based error, but it still took more than five weeks to restore self-management.” Survey respondent, answer to what happened and its impact
“A planner made a mistake. Rather than correct it, the agency chose to defend the decision.” Survey respondent, answer to what happened and its impact
“Core funding was made agency-managed in error. It was corrected only after repeated calls, a plan variation and escalation.” Survey respondent, answer to what happened and its impact
“An oversight left us unable to claim more than $20,000 of supports. The stress and distress was next level.” Survey respondent, answer to what happened and its impact
Self-management taken away 38
Stigma, fear and loss of trust
“I was made to feel fraudulent, which deeply affected my mental health.” Survey respondent, answer to what happened and its impact
“My trust in the system’s fairness has completely eroded.” Survey respondent, answer to what happened and its impact
“It made me feel shame and unsafe in a system that was supposed to support me.” Survey respondent, answer to what happened and its impact
“They infer there is a black mark against me. I do not feel safe speaking up anymore.” Survey respondent, answer to what happened and its impact
“I feel like a substandard citizen, that my reputation is not mine to make…” Survey respondent, answer to what happened and its impact
Support, workforce and cost
“Support workers took longer to get paid. Invoices were rejected for invalid reasons, creating much more work for me.” Survey respondent, answer to what happened and its impact
“All long-term support workers were lost without warning. The distress had lasting health impacts.” Survey respondent, answer to what happened and its impact
“My plan now costs more for plan management and I receive less flexible support.” Survey respondent, answer to what happened and its impact
“Life became more complicated, with many more unnecessary emails and contacts. These changes take time away from the family relationship we both want.” Survey respondent, answer to what happened and its impact
“I left the money sitting there rather than go through all the drama. It was too much stress.” Survey respondent, answer to what happened and its impact
Review and recovery burden
“It took around a year of stress and anxiety to get self-management back. I was later told it should never have been taken away.” Survey respondent, answer to what happened and its impact
“The reassessment was very difficult and stressful and retriggered PTSD. That is why I have not tried to get self-management back.” Survey respondent, answer to what happened and its impact
“Hundreds of hours were wasted trying to get life back on track. Family and support team relationships were placed under enormous pressure.” Survey respondent, answer to what happened and its impact
Self-management taken away 39
“I had to pay workers out of my own pocket and then fight for weeks to get it back.” Survey respondent, answer to what happened and its impact
The chilling effect
“I now keep my head down and do not use my funding flexibly so I will not be found non-compliant again.” Survey respondent, answer to what happened and its impact
“I do not communicate with the NDIA so as not to draw attention to myself and undergo a surprise reassessment.” Survey respondent, answer to what happened and its impact
“I now use support only for the bare minimum because I fully expect my funds to be cut next time.” Survey respondent, answer to what happened and its impact
B2. Survey question: “What should the NDIA understand or do differently?”
Non-blank responses: 52. These quotes are proposals from respondents who completed the conditional section.
Consult before deciding
“Talk first. Have real evidence.” Survey respondent, answer to what the NDIA should do differently
“Always consult before making any changes. Lived experience takes absolute priority.” Survey respondent, answer to what the NDIA should do differently
“Give the participant fair time to reply and explain any concerns so they can be resolved.” Survey respondent, answer to what the NDIA should do differently
“Do not change the plan-management method without a confirmed agreement about what the change will mean.” Survey respondent, answer to what the NDIA should do differently
Use evidence and the full track record
“Assess the person’s overall capacity and track record, not one administrative mistake.” Survey respondent, answer to what the NDIA should do differently
“If there are concerns, have a respectful conversation and ask for evidence. Do not assume the participant is guilty of fraud.” Survey respondent, answer to what the NDIA should do differently
“Look at the history of management. If there have been no problems, errors or overspending, that person has shown they can do the job.” Survey respondent, answer to what the NDIA should do differently
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“Review the nominee’s actual track record rather than relying on incorrect compliance emails.” Survey respondent, answer to what the NDIA should do differently
Support before restriction
“The process should be: identify, understand, educate and review. Support self management to continue wherever possible.” Survey respondent, answer to what the NDIA should do differently
“Talk to the participant before any decision and go through safeguards and supports before implementation.” Survey respondent, answer to what the NDIA should do differently
“Self-management can foster innovation, enhance wellbeing and dignity, and save the NDIS money. Support to self-manage should be a priority.” Survey respondent, answer to what the NDIA should do differently
Transparency, correction and accountability
“Acknowledge mistakes and rectify them as soon as they become aware of them. There needs to be open disclosure.” Survey respondent, answer to what the NDIA should do differently
“Have a clear, fair and documented policy and process, co-designed with people with disability, that the NDIA must follow.” Survey respondent, answer to what the NDIA should do differently
“Reviews of these decisions should be fast-tracked because going without support can cause serious harm.” Survey respondent, answer to what the NDIA should do differently
“Provide clear communication and a person to contact, not just a call centre. A dedicated self-direction team would help.” Survey respondent, answer to what the NDIA should do differently
Choice, control and continuity
“When someone has high needs, the greatest risk is not having access to any supports.” Survey respondent, answer to what the NDIA should do differently
“Most people with disability have ever-changing capacity. Self-management lets us move fluidly within that capacity.” Survey respondent, answer to what the NDIA should do differently
“Apply policy to the person’s individual circumstances, not in a vacuum.” Survey respondent, answer to what the NDIA should do differently
“Recognise that a customised system of support can require direct employment.” Survey respondent, answer to what the NDIA should do differently
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B3. Workshop topic: reasons, evidence and how the decision occurred
The workshop asked why the NDIA said self-management was removed, whether reasons and evidence were clear, and what discussion or notice occurred. The supplied record identified the following participant evidence.
“I think the biggest problem is they almost never decide they were wrong and retract their decisions.” Workshop participant, chat or live discussion
“Lack of training is no excuse for not applying the correct policy and procedures.” Workshop participant, chat or live discussion
“That’s the end of the conversation.” Workshop participant, chat or live discussion
“The unresolved reputational damage is appalling.” Workshop participant, chat or live discussion
“I was treated like I’m naughty when I didn’t do anything.” Workshop participant, chat or live discussion
“I’ve never felt like the NDIS is against me before.” Workshop participant, chat or live discussion
The workshop summary also recorded experiences of exclusion from a plan review, plan management changes discovered through a missing portal function, same-day calls, multiple conflicting letters, vague “unreasonable risk” findings, an unexplained “conflict of interest”, shifting reasons and an integrity flag that continued to influence decisions after the underlying debt was dropped.
B4. Workshop topic: safeguards and support before removal
The workshop asked whether the NDIA offered support or safeguards before removing self-management and what would have helped. Participants discussed partial self management, training, software, check-ins, notice and a transition period. They questioned why the person was not supported to address the concern before a restrictive decision.
“Heaven forbid we just be human and make genuine, non-malicious, unintentional mistakes.” Workshop participant, Zoom chat
B5. Workshop topic: impacts and review
“I was told either I am a thief or I am incompetent, take your pick. It is devastating.” Workshop participant, chat or live discussion
“It is so isolating when they make you feel like you are the only person fighting their decisions.” Workshop participant, chat or live discussion
Self-management taken away 42
“It is the trauma that the NDIS causes that makes you unhinged, not self-management.” Workshop participant, chat or live discussion
“The family is traumatised and no longer trusts the NDIA.” Workshop participant, chat or live discussion
“Pushing back feels like it leads the NDIA to go after you harder.” Workshop participant, chat or live discussion
Participants described using complaints, freedom of information requests, MPs, advocacy and the Administrative Review Tribunal to understand or challenge decisions. One participant reported obtaining urgent interim relief through the Tribunal while the substantive matter continued. The workshop was peer support and general information, not legal advice.
B6. Participant case-study evidence: what questions does it answer?
The following evidence map identifies how the two consented case studies relate to the report’s core qualitative questions. It summarises their written accounts rather than repeating the narratives in section 8.
Related qualitative Evidence from the participant case studies question
Karen reports a data-entry error and dispute about direct What triggered the employment. Rick reports alleged non-compliant claims and a integrity process? potential conflict of interest involving a participant-controlled not-for-profit organisation.
Karen reports refused meetings and little engagement with Was the concern policy or accounting material. Rick reports repeated explained and could the unanswered requests for online, telephone or face-to-face person respond? discussion.
Were support and less Neither account describes structured education, a participant restrictive safeguards liaison, an impact assessment or a supported pathway to tried? preserve self-management before restriction.
Karen reports losing access to plan funds after her plan What happened to manager withdrew. Rick reports critically low core funding, essential supports and uncertainty about critical personal care and increased daily life? pressure on family and informal supports.
Karen reports that the $21,000 debt was withdrawn without Could the decision and record correction or restoration. Rick reports months of record be corrected? uncertainty and no meaningful conversation before the plan became agency-managed.
Self-management taken away 43
Appendix C. Sources and method notes
Primary 2026 lived-experience sources
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Self Manager Hub. Self Management Survey 2026, final export supplied 10 August
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The file contains 266 unique responses across 40 fields.
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Self Manager Hub. “NDIS Self-Management Workshop, Chat Comments by Theme” and “Self Manager Hub Workshop, Participant Comments by Theme”. Workshop held 19 June 2026, 12:00 to 13:30 AEST.
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Karen, NDIS participant. “Scheme integrity briefing note, NDIA CEO: Integrity must apply not just to participants, it must apply to the Agency itself.” 25 July 2026. Karen consented to the inclusion of her experiences in this report and to being identified as an NDIS participant.
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Rick, NDIS participant. “NDIA Integrity Process Impact on Me.” Written statement for the NDIA CEO, senior executive and participant roundtable, 2026. Rick consented to the inclusion of his experiences in this report and to being identified as an NDIS participant.
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Self Manager Hub. “Workshop: Has the NDIA taken self-management away?” Published 5 June 2026. View source
Additional lived-experience evidence on direct employment
Direct Employers Network, with support from Self Manager Hub. Experiences and Learnings from NDIS Participants and Families who use Direct Employment: Survey Findings & Policy Recommendations. October 2025. National survey of 73 NDIS participants and families. Used as an additional source of evidence about the purpose, operation, outcomes, governance and policy needs of direct-employment arrangements. View source
Legislative and NDIA sources
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National Disability Insurance Scheme Act 2013, compilation in force 6 May 2026, including sections 43 and 44 and the plan-variation principles. View source
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National Disability Insurance Agency. “What is self-managed funding”. Page current as of 3 June 2026. View source
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National Disability Insurance Agency. Self-management Policy. June 2022, particularly paragraphs 7.44 to 7.50. View source
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National Disability Insurance Agency. Your guide to self-management, current edition, especially pages 12 and 13. View source
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National Disability Insurance Agency. “Reviewing our decisions”. Guideline dated 4 August 2026. View source
Survey analysis notes
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The workbook contains 266 unique response IDs and responses completed from 15 July to 10 August 2026.
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The affected cohort includes only respondents who explicitly selected complete removal, limitation or restriction, or refusal of a request to self-manage.
Self-management taken away 44
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One respondent could select several impacts and several review pathways. Percentages for those questions therefore do not sum to 100%.
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The reasons question contains both standard and free-text responses. The report presents the full process distributions and uses the written evidence thematically rather than treating every custom response as a comparable category.
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The survey was voluntary and promoted through Self Manager Hub networks. It is a convenience sample and cannot estimate Scheme-wide prevalence.
Workshop analysis notes
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The supplied PDF is a themed record of Zoom chat and live discussion. It is not a verbatim transcript of every contribution.
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The workshop record includes participant names, but this report removes those names and unnecessary identifying detail.
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The source does not state total attendance or the number of unique people contributing. No percentages or prevalence claims have been calculated from workshop evidence.
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Host commentary was omitted from the supplied live-discussion summary. The report uses participant contributions and the published workshop purpose.
Case-study analysis notes
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Karen, NDIS participant, and Rick, NDIS participant, have each consented to the inclusion of their experiences in this report and to being identified as NDIS participants. Their surnames have been omitted. Survey and workshop contributors remain de identified.
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The case studies are first-person accounts and were analysed as qualitative evidence. They provide chronology, mechanisms and impact, not frequency or Scheme-wide prevalence.
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The accounts were not independently checked against NDIA case files. Statements about suspected motive or retaliation are attributed to the author and treated as matters requiring independent review, not findings of fact.
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Case-study material has been condensed for relevance and readability. The meaning of the authors’ accounts has been preserved. Then they had no chance to
Self-management taken away 45