Integrity of the National Disability Insurance Scheme and associated failures of the NDIA to deliver a regulatory environment that adequately protects people living with Prader-Will Syndrome

Joint Standing Committee on the National Disability Insurance Scheme c/o Committee Secretariat PO Box 6100 Parliament House Canberra ACT 2600 ndis.joint@aph.gov.au / seniorclerk.committees.sen@aph.gov.au

Dear Committee Members,

Re: Integrity of the National Disability Insurance Scheme and associated failures of the NDIA to deliver a regulatory environment that adequately protects people living with Prader-Will Syndrome

Prader-Willi Syndrome Australia Ltd (PWSA) represents people who have Prader-Willi Syndrome (PWS), their parents and supporters, through Prader-Willi Syndrome Australia Ltd.

1) Executive summary

PWSA welcomes the recommendations in the Annual Report No.1 of the 48th Parliament1. However, there continues to be flaws in the system that allow for sharp practices and fraud against people with PWS. People with PWS are vulnerable due to cognitive impairments, intellectual disability and neurological issues such as executive brain dysfunction.

The issues faced by people with Prader‑Willi Syndrome (PWS) under the current NDIS framework are not marginal implementation problems — they are systemic regulatory failures that expose an extremely vulnerable population to predictable risk of exploitation, associated harm and preventable deterioration.

The NDIA currently fails to:

• recognise the compounding, life‑threatening nature of PWS as a neurodevelopmental disorder;
• fund supports commensurate with the known clinical risk profile of the condition;
• regulate providers effectively for vulnerable participants; For example providers who accept payment for services that are not actually delivered by accepting high‑intensity payments without delivering high‑intensity capability; and
• protect participants who cannot reasonably self‑advocate, self‑monitor, or self‑report provider non‑compliance.

As a result, people with PWS experience avoidable medical crises, behavioural escalation, involvement with emergency services and the justice system. They may have rapid budget depletion with poorer outcomes, reduced capacity building and have premature mortality.

These outcomes are foreseeable, documented, and preventable.

2) Introduction

Everyone living with PWS is an individual that will develop their own personality and characteristics. However, every individual has a collection of characteristics that make PWS a very complex condition to support.2,3,4,5 Many of the characteristics effect ‘thinking’ ability. This means these people are vulnerable to sharp practices and fraud. Refer to the Appendix for an overview of PWS characteristics, mapped to the NDIS impairment categories.

Before proceeding, we take this opportunity to speak in support of the National Disability Insurance Scheme (NDIS). PWSA supports the founding intent of the NDIS and acknowledges that where plans are appropriately funded and delivered by competent, PWS‑literate providers, outcomes improve markedly. However, positive individual outcomes do not negate systemic regulatory failure and rigorous oversight.

Unfortunately, this is not always the case. Individuals with meagre personal and family resources are sometimes no match for the might of the National Disability Insurance Agency (NDIA). The burdensome administrative process seems to distort what should be a level playing field, in favour of the NDIA. This includes making the cognitively impaired participant and/or their families responsible for identifying sharp practices and fraud by NDIS providers. This should not be the case. The NDIS regulatory environment should be protecting these most vulnerable participants. Protection should include proactive identification of issues by regulators for investigation combined with powerful, adverse consequences for the perpetrators.

While this submission focuses on some of the shortfalls in the implementation of the NDIS and how these shortfalls impact our families, we also acknowledge and thank the many dedicated and skilled support workers and their managers who daily commit their time and resources to support individuals within our community with diligence, dedication and compassion.

3) Clinical Overview: Prader‑Willi Syndrome

Prader‑Willi Syndrome is a rare, lifelong, multi‑system genetic disorder with a distinct and well‑established neuro- behavioural phenotype6. It is characterised by:

• universal executive brain dysfunction;

• impaired judgement and risk awareness;

• compulsive hyperphagia driven by hypothalamic dysfunction (intense, persistent and insatiable hunger);

• response perseveration (chronic high anxiety), rigidity, and emotional dysregulation;

• elevated prevalence of serious mental illness, leading to psychosocial disability;

• impaired receptive and expressive communication despite apparent verbal fluency.

2 Prader-Willi Syndrome - Clinical Genetics, Diagnosis and Treatment Approaches: An Update https://pmc.ncbi.nlm.nih.gov/articles/PMC7040524/ 3 Behavioral phenotype in adults with Prader-Willi syndrome https://pubmed.ncbi.nlm.nih.gov/21227640/ 4 Clinical management of behavioral characteristics of Prader-Willi syndrome https://pubmed.ncbi.nlm.nih.gov/20505842/ 5 Body weight, behaviours of concern, and social contact in adults and adolescents with Prader-Willi syndrome in full-time care services: Findings from pooled international archival data https://pubmed.ncbi.nlm.nih.gov/38326873/ 6 Behavioral features in Prader-Willi syndrome (PWS): consensus paper from the International PWS Clinical Trial Consortium - PubMed, 2021

These characteristics are not behavioural choices. They are neurologically mediated impairments recognised in international clinical consensus literature that will affect the individual from early childhood until death.

Without effective external system regulators, implementation of structured supportive local environments, skilled behavioural management, and proactive support, adults with PWS are at direct risk of:

• being subject to sharp practices and fraud

• morbid obesity and early death;

• repeated behavioural crises;

• assaultive incidents leading to police involvement;

• psychiatric decompensation;

• social isolation and institutional cycling.

Environmental control, staff competence, and consistent enactment of various sub-plans are non‑negotiable clinical requirements, not lifestyle preferences, and are supported via registered Behavioural Support Plans.

The characteristic impairments, and their interplay, means these participants may not realise when they need to, or be able to, communicate about their under-performing service providers7.

The interplay between the characteristics of the syndrome make the support needs intense. Delivering support for the physical manifestations of the condition can trigger challenging behaviours. For example, implementing the dietitian’s meal plan can cause the participant to become aggressive and assault staff. This can lead to police intervention.

People with PWS need life-long support, preferably in purpose-built Specialist Disability Accommodation (SDA), designed specifically for the needs of people with PWS. In addition, staff need to be specially trained in the management of the complexities of PWS.

4) Purpose

The purpose of this submission is to enable the committee to make recommendations to the NDIA about how to raise the integrity of the scheme and better protect people with PWS from fraud and sharp practices. PWSA aims to make the Committee aware of the complexity of supporting people with PWS. At the same time, PWSA will outline the issues that members of the PWS community have been experiencing under the current NDIS arrangements. The issues are typically due to the systemic neglect of the NDIA to provide adequate budgets to support people with PWS properly.

5) Non-compliance issues

Families are heavily burdened by the NDIA by constantly having to prove the complexity of PWS and what the risks and opportunities are for those with the condition. Families of people with PWS are traumatized by the effort and

7 Meeting with professionals – Adults with PWS https://ipwso.org/information-for-families/adult-life/meeting-with-professionals/

consequences of having to manage the PWS presentation, and deal with the administrative consequences8. People with PWS are put at severe risk of adverse health, social and legal outcomes when the support arrangements are not delivered ‘as advertised’.

A fundamental failure of the NDIA is the repeated misclassification and under‑funding of many people with PWS. They are easily manipulated and can even be ‘bribed’ by providers due to their drive to get food. Under these conditions a person may not report an unreliable provider.

The NDIA repeatedly treats PWS as a series of isolated impairments rather than a compound neurodevelopmental condition whose risks arise from interaction effects across domains (impairment categories).

While impairment severity in any single NDIS category may sometimes appear moderate, the aggregate functional impact is severe and disabling. Failure to fund on this basis leads directly to unsafe plans.

When plans are under‑funded providers are more tempted to engage in sharp practices or fraud such as:

• cutting corners while charging full rates;
• deploying inexperienced staff to high‑risk environments at same high rate;
• Behaviour Support Plans, dietetic plans, diabetes plans, and mental‑health plans are selectively ignored;
• participants lack sufficient staff presence to maintain food security or behavioural stability.

This is not participant choice — it is systemic neglect disguised as market flexibility. Protection from market driven harms is based on a premise that people with PWS have the intellectual capacity to participate in ‘the market’. That assumes they can exercise critical thinking, financial literacy, digital literacy, manage complex information, follow processes and more. Given that they can’t do all this effectively, the NDIS system regulators must provide the protection.

6) Non-compliance examples disclosing a lack of integrity

Families have reported the following adverse experiences to PWSA. Recommendations follow.

• a) SIL providers increasing charges after ART rulings on better Plan, without increasing staffing intensity, resulting in unchanged risk but higher cost.

  Non-compliance Impact: persistent behaviours of concern, reduced ability to pursue their goals, stalled capacity building.

• b) Unqualified staff overriding clinically mandated food controls, misusing the language of choice and rights. The provider is not delivering a safe service and is likely to be in breach of the NDIS Commission’s Policies but still taking the participant’s money.

  Impact: obesity progression, metabolic instability, anxiety behaviours, distraction from pursuing goals and building capacity, reduced life expectancy.

• c) NDIA Planners (or proxy) say that a person’s diabetes or mental illness is a health responsibility, even though evidence shows that the cause in the individual is a PWS genetic pre-disposition to these caused by altered

brain development. The budget granted is then inadequate for safe support. Or the SIL staff do not enact the relevant Management Plans despite being paid to do so.

Non-compliance impact: The resident experienced ongoing ill health, reducing their ability to pursue their goals and build capacity

• d) Support worker salary structure does not reflect the more sophisticated aptitude, attitude, fortitude and skills needed to support people with PWS. That is, support workers have told PWS families that they would rather work with easier participants as they will get the same pay anyway, and quit. Then casual or ‘green’ staff are supplied by the provider. The casuals are not adequately skilled or trained and yet the provider charges the participant the same money.

Non-compliance impact: The resident experienced ongoing ill health and challenging behaviours, reducing their ability to pursue their goals and build capacity

• e) Billing for high‑intensity or specialised supports without staff possessing requisite competence, constituting misrepresentation of service delivery.

Non-compliance impact: financial exploitation without compensatory benefit.

• f) The NDIS has identified 7 categories of impairment. People with PWS have characteristics that fall into many of the categories (Refer to Appendix). For some individuals the expression of any single impairment might not be very severe. But as a collection, the impairments compound and cause significant dysfunction and maladaptation, with life threatening consequences. Any support given to the person with NDIS needs to address all the impairments. If a support worker accepts payment and does not have the skill or interest to support the complexity of PWS, then they have fraudulently accepted that payment. (Refer to the Appendix for an illustration of the complexity).

Non-compliance impact: The resident experienced ongoing ill health and challenging behaviours, reducing their ability to pursue their goals and build capacity

• g) People with cognitive impairments need help, not just support. That is ‘support’ presupposes the person has enough cognitive and executive brain function to recognize then explain what support they want. But they may not self-express in an effective manner. They need support people who will anticipate problems, issues and opportunities, then present options to the person with PWS so they can make their choice and decision. If the supports are not doing this then they are claiming wages but not providing the full, proactive service.

Non-compliance impact: The resident misses out on experiences and opportunities to live a more ordinary life and build their capacity

• h) Misapplication of dignity of risk, transferring foreseeable harm to participants unable to comprehend consequences. Some support workers tend to go with the verbal requests of the person rather than taking holistic view and negotiating the safety supports that need to be in place. That’s because it is easier to put all the risk on the participant rather than putting in the effort that negotiation takes. This is taking wages without taking the appropriate level of responsibility.

Non-compliance impact: The resident was injured in a serious accident, going to hospital by ambulance, reducing their ability to pursue their goals and build capacity

• i) For people who live in SDA-SIL group homes, there are typically also Community Participation (CP) providers involved. Sometimes that CP worker is under-performing, e.g. coming late or leaving early. But the participant is not cognizant of that. They still pay the full shift amount.

  Non-compliance impact: The resident experienced a faster rate of budget expenditure but without a service, reducing their ability to pursue their goals and build capacity

• j) Sometimes SIL staff do not attend their shift as expected (e.g. sick or late). But even though the staffing ratio has been temporarily reduced, the provider charges the participant the same cost.

  Non-compliance impact: The resident experienced stress and service reduction, reducing their ability to pursue their goals and build capacity

• k) Charging full SIL rates despite staff absences or reduced ratios. PWSA recognises that the NDIS allowance for short notice cancellations of up to seven days in Supported Independent Living environments is a deliberate and necessary design feature. SIL is a highly complex service model requiring rapid roster reconfiguration, industrial compliance, continuity of care safeguards, and careful assessment of whether displaced staff can be safely and appropriately redeployed to other participants with differing needs. These operational realities mean that unused labour cannot always be reallocated, or cost neutralised in real time. The concern raised in this submission is therefore not the existence of cancellation payments, but the absence of consistent, participant facing transparency explaining how cancellation provisions operate in practice. For participants with profound cognitive and executive impairment, insufficient explanation can undermine trust and create perceived harm, even where providers are acting fully within the rules. Improved clarity, communication, and standardised reporting — rather than punitive restriction — would better protect both participants and ethical providers.

  Non-compliance impact: diminished safety with no financial adjustment.

• l) Documentation and records are vital. Some providers do not deliver on this part of their responsibility effectively, even though they are being paid to do so (for example shift notes and Incident Reports in group homes).

  Non-compliance impact: The resident experienced a poor result at Plan Review, due to lack of data. This meant a reduced SIL service and an increased risk of harm. The resident had to spend more time with their Nominee putting stress on everyone and reducing the resident’s ability to pursue their goals and build capacity

• m) Group homes are not kept clean enough, nor is the laundry done to a level that ordinary families would expect. But Service Agreements are very generic and vague about such issues, so service providers cannot be held accountable. Families would expect a certain standard for the payment, but it is not delivered. However, it is virtually impossible to remove a SIL provider from a group home due to the requirement for 100% consensus and many residents are not able to make such a decision nor have a Nominee willing to engage with the onerous process.

  Non-compliance impact: This causes hygiene and vermin issues. It means the residents go into the community looking ‘shabby’ rather than ordinary, or smelling bad which can pose a social barrier. It is not modelling an ‘ordinary’ life for the residents and makes it harder for them to understand how to be hygienic and approachable when they are out in the community.

7) Summary

The above are not isolated provider failures. They persist because regulatory systems do not proactively detect or deter them.

The current NDIS regulatory framework:

• places responsibility for oversight on people least able to exercise it;
• rewards providers for occupying complex niches without making suitability visible to stakeholders or enforcing competence thresholds;
• lacks real‑time, broad data integration capable of identifying exploitative patterns;
• conflates participant autonomy with abdication of safeguarding duties;
• fails to discharge statutory, common‑law, and human‑rights obligations owed to participants with profound cognitive vulnerability.

These failures engage established legal principles of foreseeability, duty of care, and reasonableness. The outcome is predictable harm from fraud, sharp practices and poor provider performance.

8) Recommendations

• 1. The NDIA must formally recognise PWS as a compound, high‑risk neurodevelopmental condition warranting funding that reflects cumulative impairment burden.

  Even if a person living with PWS does not have a severe disfunction in any single category, the breadth of their impairments across most categories means that they are dysfunctional to a severe degree and cannot survive without a substantial NDIS budget to address the compounded needs. When appropriately funded the participant will have enough budget to protect them from the other issues, such as inadequate staff training and inadequate protection.

• 2. There needs to be a Supervisor appointed and present on-site for shifts, in each group home. This will reduce the likelihood of under-performing staff such as those who do not enact Behaviour Support Plans properly.
• 3. The NDIS Commission Standards, must build in a requirement for the SIL staff to monitor the comings and goings of other providers, such as Community Participation, and report to the Nominee. This will help to ensure that the CP provider is not charging for time not there or not delivering a service that is skillful enough for the complexity of the individual with PWS.
• 4. Vulnerable people need to have an independent advocate available to them, not just when a crisis arises. The advocate should be able to build a rapport with the participant so that if something is not working the advocate can observe, identify and intervene. The advocate should have powers like those of the Community Visitor Scheme in Victoria, but at the individual level, and ongoing. The advocates should be employed by an independent, impartial government entity such as the Disability Services Commissioner in each State and Territory.
• 5. Service Agreements must improve dramatically.
  • a. The SIL Agreement Schedule in particular must be required to have much more detail instead of ‘motherhood’ service items like ‘daily living’. There should be specifics about data collection, enacting individual’s various plans, initiating leisure activities, Active Support Model, life admin support such as pay TV trouble shooting, shopping around for best buys, proactive information gathering, motivating them to do their rehab exercises and much more. Sounds like common sense. But in the sector, they say “if it isn’t written down, it won’t happen”. The community needs to be educated on what details could be included in a best practice model agreement. The NDIS Fact Sheet fails to alert the participant regarding how to have a lot of detail about ‘what service or support is being provided’. Detailed model service agreement should be developed by the NDIA.
  • b. Service Providers must be banned from sending their Service Agreements as ‘set in stone’ PDF documents for electronic signature. The Service Agreement should be supplied initially as an

editable draft so that the participant and their Nominee can add suggestions, for negotiation. At present, PDFs are a barrier to flexibility in Service Agreements.

• 6. Enforce evidentiary standards for short notice cancellations. Providers must be able to prove that the worker did not take on another shift in that slot. The Regulator should be monitoring that because it poses a significant risk of double dipping. The initial participant can’t find out whether they were fairly charged.
• 7. The participant and their Nominee must be shown the credentials of each worker. Otherwise, the participant won’t know if the staff they are paying High Intensity wages for actually have that skillset.
• 8. Introduce complexity-responsive pricing and commissioning mechanisms that recognise higher skill requirements, supervision intensity, and risk management obligations in complex support environments, to stabilise workforce supply and continuity of care.
• 9. There must be audits of SIL provider shift documentation. Minor incidents are supposed to be recorded (not just major ones) so that incidents and heightened behaviour can be analysed and preventative action taken.
• 10. It should be mandatory that house level rosters are available to participants and their Nominees. This way there is transparency around the ratio of support at any given time of the day. That can be matched against the invoices.
• 11. Use of cross-sector ‘big data’. The NDIA and/or NDIS Commission should be collating and analysing data from many sources to identify anomalies in provider behaviour. The data should be collected and shared automatically between many regulatory bodies. These would include aged care sector, child care sector, police, consumer affairs, Disability Commissioners, and alike organisations. The purpose would be to look for recurring names that have been reported or penalized in any jurisdiction. Also, excessive income, service or complaint patterns that are outliers would be apparent. There must then be proactive investigation and reporting of names to the public. Even without conviction, providers must be stopped from servicing otherwise there is no deterrent. Then Participants can make their own choices from safe, honest providers.

9) Conclusion

People with Prader‑Willi Syndrome cannot withstand a system that assumes rational self‑advocacy, invisible capacity, and benign market behaviour.

Without decisive regulatory correction, the NDIS will continue to enable fraud, sharp practices and harm while calling it choice.

PWSA urges the Committee to treat these failures with the seriousness they warrant.

I am happy to discuss these matters further, if that would be of assistance.

Yours sincerely,

James O’Brien Chair

24th April 2026

Appendix

Complexity of characteristics, mapped to NDIS Impairment categories for Prader-Willi Syndrome

NDIS Impairment Category	PWS Impairments
1. Intellectual	- Mild to moderate intellectual disability (universal) - Global developmental delay (universal in childhood) - Slow processing speed - Reduced working memory - Difficulty with abstract reasoning - Learning difficulties across all domains - Concrete thinking style
2. Cognitive	- Impaired executive functioning (universal) - Poor impulse control (universal behavioural phenotype) - Rigidity and cognitive inflexibility (universal) - Obsessive or repetitive thinking - Difficulty with planning, organising, sequencing - Poor problem-solving skills - Perseveration - Reduced attention span - Difficulty shifting tasks - Impaired judgement and risk awareness - Temper outbursts (universal behavioural phenotype) - Anxiety (very common) - Obsessive–compulsive behaviours (universal tendency) - Mood instability - Social withdrawal - Difficulty coping with change - Hoarding behaviours - Emotional dysregulation - Increased vulnerability to stress - Poor self-management - Manipulative - Reduced social cognition
3. Neurological	- Hypothalamic dysfunction (universal) - Hyperphagia / lack of satiety (universal hallmark) - Temperature regulation problems (universal) - Sleep disorders (excessive daytime sleepiness; sleep apnea) - Low muscle tone (hypotonia) persisting into adulthood