Serious problems with the National Disability Insurance Scheme Amendment Bill impacting people with Prader-Willi Syndrome (Family or carer experience)

Submission 733

Community Affairs Legislation Committee

Committee Secretary

Senate Standing Committees on Community Affairs

PO Box 6100

Parliament House

Canberra ACT 2600

community.affairs.sen@aph.gov.au

Dear Committee Members,

Re: Serious problems with the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 mean some parts should be rejected.

Prader-Willi Syndrome Australia (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 opportunity to comment on the proposed Bill, as advertised1 on 14 May 2026.

   People with PWS are vulnerable due to cognitive impairments, intellectual disability and

neurological issues such as executive brain dysfunction and neurobehavioural differences that lead to challenging behaviours. Intense support is often required.

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

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.

PWSA welcome changes to fraud measures, provider oversight and compliance management. However, the PWS community is deeply concerned that many of the proposed changes to the Bill will exacerbate the difficulties faced by people living with PWS.

Problems with the Bill in summary:

• Automated decision making tools can be flawed or misused. They are unproven and safeguards are inadequate

• Minister of the day will have too many powers

• Families taking on more of the support is unrealistic and not sustainable for them 1 Parliament of Australia consultation webpage: https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/NDISFutureGenBill

Prader-Willi Syndrome Australia Ltd

a. 299 Low Head Road, Tasmania, Australia, 7253 | ABN 12 625 483 909

w. www.pws.org.au | e. info@pws.org.au | p. 1800 797 287                                         1

Submission 733

• Material details are missing from most of the proposed changes to participant related activities

• Changes are being introduced too quickly

• “…must have tried all appropriate treatment” is problematic

• Emphasising sustainability of the scheme rather than participant safety is dangerous

• Plan budgets should not be locked into three month periods

• It is wrong for the participant/ Nominee to be locked out of the plan renewal process

• Disagree with the Plan suspension arrangements

• Failure to recognize the needs of the whole person

• Caps that limit funding may cause neglect without proper budget support Recommendations follow in section 5.

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 support2,3. Refer to Appendix 1 for an overview of PWS characteristics, mapped to the NDIS impairment categories.

The NDIA currently fails to:

• recognise the compounding, life‑threatening nature of PWS as a multisystem neurodevelopmental disorder;

• fund supports commensurate with the known clinical risk profile of the condition;

• enable the participant and their Nominee/informal support to access appropriately trained support workers; and

• protect participants who cannot reasonably self‑advocate, self‑monitor, or self‑report provider non‑compliance.

Any changes to legislation should be removing the above failures, not exacerbating them.

3. Purpose The purpose of this submission is to make clear to the committee the adverse impacts on people with PWS from certain proposals in the Bill, to reject many parts of the Bill and to make recommendations.

4. Problems with the Bill The problems identified by PWSA are that:

2 Prader-Willi Syndrome - Clinical Genetics, Diagnosis and Treatment Approaches: An Update

https://pmc.ncbi.nlm.nih.gov/articles/PMC7040524/ 3 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/

Prader-Willi Syndrome Australia Ltd

a. 299 Low Head Road, Tasmania, Australia, 7253 | ABN 12 625 483 909

w. www.pws.org.au | e. info@pws.org.au | p. 1800 797 287                                         2

Submission 733

• The use of automated and standardized tools to assess and review people with PWS means they will not be treated as individuals. Instead, they will be ‘categorised’ without the full range of disability being captured. This can result in inadequate support budgets and an increased risk of harm. PWS is a complex4, condition where the intersection of different characteristics of their disability exponentially increases dysfunction. Additionally, the safeguards to prevent flaws and misuse of automated decision making tools are not good enough. PWSA does not want its members to have an NDIS experience like Robodebt or underfunding like is occurring in the aged care sector.

• The Minister of the day will have too many powers to make yet more changes to the NDIS without the balancing mechanism provided by a parliamentary process and legislation. Participants and their supporters have been suffering with all the changes to the NDIS. This chaotic situation should not be further enabled by placing too much reliance on Rules to implement changes. People with PWS will face added risks to their already foreshortened lives when NDIS changes are rushed through without proper scrutiny and accountability or fall prey to ‘support determinations’ made by the Minister. Further changes could be made by the Minister after the Bill passes, without safeguards in place.

  • The expectation that families take on more of the support is unrealistic and not

acceptable. Looking after a person with PWS has profound and traumatic impacts. It is inappropriate for the NDIA and the Bill to assume that looking after a child with PWS is barely different from caring for a neurotypical child of the same age. There is added load5. Research has identified a substantial burden on mothers, families and other caregivers; “These findings underscore the need for comprehensive resources to support both the psychosocial and practical aspects of PWS care.”6. If the NDIS cuts back adequate supports for PWS participants the ‘load’ does not disappear, it just moves to other systems, with the safety and wellbeing of the participant and families compromised as a result.

• Details that will have a major impact on people with PWS are missing such as the criteria for and definition of Functional Capacity. It is of great concern that the ‘categorisation’ approach will ignore the cumulative effect of the disabling characteristics caused by PWS. It is impossible for the PWS community to provide adequate feedback when the detailed information has not been provided to the community.

• The proposed changes are being introduced too quickly. There is not enough time for consultation. This is repeating errors of the past when changes to the NDIS are

  implemented without true co-design. There has been poor evaluation of the

4 Behavioral phenotype in adults with Prader-Willi syndrome https://pubmed.ncbi.nlm.nih.gov/21227640/

5 Anxiety, Depression and Stress in Parents and Siblings of People Who Have Prader‐Willi Syndrome: Morbidity

Prevalence and Mitigating Factors - Micallef Pulè - 2025 - Journal of Intellectual Disability Research - Wiley Online

Library

6 The burden of illness in Prader-Willi syndrome: a systematic literature review (2025); https://pmc.ncbi.nlm.nih.gov/articles/PMC12291511/

Economic Burden of Prader-Willi Syndrome Among Paediatric Patients in the United States,

https://acadia.com/en-us/pdf/healthcare-professionals/scientific-publications/congress materials/2025_ISPOR_Kreher_Economic_Burden_PWS_Pos.pdf

Prader-Willi Syndrome Australia Ltd

a. 299 Low Head Road, Tasmania, Australia, 7253 | ABN 12 625 483 909

w. www.pws.org.au | e. info@pws.org.au | p. 1800 797 287                                         3

Submission 733

consequences on people with cognitive impairments like PWS who need extra supports due to their reduced ability to self-express. They require supported decision making.

•  The PWS community  is alarmed at the concept of “must have tried all appropriate

treatment”. This is problematic because PWS is rare. This means the skills and services that could potentially assist may not be available in a particular geographical area. Also, a treatment may be too expensive for a family (eg a private psychiatrist) and the wait on the public list leaves a gap in support for the person with PWS. This can lead to a foreseeable neglect or a crisis that could have been reduced, to some extent, by NDIS supports.

•  PWSA regards the change to emphasise  sustainability of the scheme rather than

participant safety is dangerous. People with PWS have behaviours of concern and removing the scaffold of supports from a person who is stable will only precipitate a crisis. The volatile characteristics of PWS are not able to be ‘learned away’. Behaviour support is a constant need as people with PWS “exhibit a higher overall behavior disturbance compared to individuals with similar intellectual disability” 7. See Appendix 2.

• PWS is a multifaceted and volatile disability. If the Nominee has capacity to manage the Plan sustainably, then Plan budgets should not be locked into three month periods. There will be unpredictable peaks and troughs of need throughout the year. Each Plan and its potential for implementation should be assessed on capability, not standardization.

• When there is a Plan renewal, it is wrong for the participant and their Nominee to be locked out of the process. It is wrong that the renewed Plan be prepared without the Participant. It is not acceptable that the Minister can interfere with a Plan budget at this time without the Participant having input. PWSA disagrees with the proposal that the Minister can make ‘secretive’ alterations to a Plan and there be no recourse of independent appeal. Repeating the same assessment process is not an acceptable ‘appeal’ solution. Also, it is inconsistent with a sustainability ethos to make adults with PWS go through an annual renewal process. Their level of function typically reaches a plateau and excessive administration in renewing plans annually is a waste of money. Plans should be longer.

• PWSA disagrees with the Plan suspension arrangements. PWSA does not trust the NDIA or its call centre to follow the process of making contact with the participant in a manner that is consistent with the communication needs of someone who has PWS. People with PWS have ‘thinking’ impairments and may not understand the process they are being expected to engage with nor be able to respond in a timely manner. They may not have a competent Support Coordinator or informal support. This could put them at risk of immediate harm and even homelessness.

• It is more than disappointing that the NDIS seems to be changing its principles to reduce recognition of individual and instead put people in ‘a category’. Because PWS is multi faceted and complex, failure to recognize the needs of the whole person is highly likely to result in more crises, demands on other sectors such as health and emergency services

7 Clinical management of behavioral characteristics of Prader-Willi syndrome https://pubmed.ncbi.nlm.nih.gov/20505842/

Prader-Willi Syndrome Australia Ltd

a. 299 Low Head Road, Tasmania, Australia, 7253 | ABN 12 625 483 909

w. www.pws.org.au | e. info@pws.org.au | p. 1800 797 287                                         4

Submission 733

plus a decline in the capacity of the person with PWS. The risk here is that real needs will be ignored and the person with PWS will have their safety and well-being compromised. Family members and the public may also wear the consequences of poorly supported challenging behaviours.

• It is unacceptable that setting hard caps that may limit funding to less than the full cost of a ‘reasonable and necessary’ support. For people with PWS, it has already been seen that

  this results in inadequate service levels and death8. PWS is complicated in its intense

support needs and these need to be addressed individually.

•   There  is too  little detail in most of the proposed changes impacting participants. For

example, what supports on the ‘in list’, such as diabetic BGL sensors might get pushed to ‘a more appropriate system’? Who and how will ‘value for money’ for what outcomes and when the outcomes might be achieved or interpreting whether a support is effective and beneficial be interpreted?.

5. Recommendations

1. The Bill must not proceed in its current form. The Minister must not have such unilateral powers.

2. The NDIA must formally recognise PWS as a compound, high‑risk neurodevelopmental condition. Prader-Willi as a syndrome warrants funding that reflects the interplay, and cumulative effect of its multiple impairments. They are individuals with a spectrum of functional impairments and must be recognized with individualized Plans, not be ‘standardised’.

Even if a person living with PWS does not have a severe dysfunction in any single category, the breadth of their impairments across most categories means that they are dysfunctional to a severe degree overall 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 neglect and harm, such as obesity complications, inadequate staff training or ratios.

3. Vulnerable people such as those with PWS need to have an independent advocate available to them, not just when a crisis arises. The advocate should have time to build a rapport with the participant. This way, during assessments and reviews, the person with PWS will not be disadvantaged by their reduced ability to comprehend the process. Their functional impairments can be articulated and captured. The advocates should be employed by an independent, impartial government entity such as the Disability Services Commissioner in each State and Territory.

4. Risks to the PWS participant, support staff and the wider community are likely to increase if supports are inadequately funded. The probability of underfunding a person with PWS would increase if the Bill goes ahead in its current form. This is because of the proposed assessment mechanisms and standardization of support budgets. Also included are the

8 Federal court slaps record $1.9m fine on ACT NDIS service provider after disabled man choked on food - ABC

News

Prader-Willi Syndrome Australia Ltd

a. 299 Low Head Road, Tasmania, Australia, 7253 | ABN 12 625 483 909

w. www.pws.org.au | e. info@pws.org.au | p. 1800 797 287                                         5

Submission 733

automated tools and the under-qualified person administering the tools. There are also foreseeable issues with the opacity of the participant’s information relied on by the NDIA and reduced appeal avenues even after the NDIA’s own inability to correctly identify the level of capacity.

5. Limiting the criteria for a Plan/budget reassessment due to a change of circumstances is wrong. PWS is a multi-faceted and volatile condition. Needs change suddenly and for safety reasons a quick response is required from the NDIA. This has rarely been timely. PWSA members have had many bad experiences where they have had to apply for a change of circumstances because the NDIA has failed to take into account the current circumstances due to a Planner’s error. This can reflect that person’s needs were under funded in the first instance, not a manipulation of the NDIS by a person disabled by PWS.

6. A Provider of Last Resort needs to be made available within the NDIS. This includes for accommodation. Some people with PWS have SDA funding but due to challenging behaviors, they can face eviction and need to relocate quickly or live by themselves after an Incident. They must not be made homeless by failings of the NDIS.

7. Automated assessment tools should not be used in the manner proposed. Such use must be co-designed, administered by allied health professionals and proven not to disadvantage people with PWS.

8. The NDIS must have more than just “regard” for the safety of the PWS participant. Safety must be paramount in all decisions by the NDIA because it is already known that these people are more vulnerable than most and die young as a result.

6. Conclusion People with Prader‑Willi Syndrome cannot withstand a system that assumes rational self‑advocacy, invisible capacity, and that an impairment in one category is the only thing that reduces their functional capacity. Prader-Willi Syndrome is complex and the NDIS system must not set them up to be neglected or harmed.

Therefore, those aspects of the proposed Bill that put people with PWS at risk must not proceed in their current form. Some such aspects of the Bill are access, permanency, standardization, curtailing reassessments, renewing or suspending plans, functional capacity criteria, and more. There needs to be full detail given to the community before the Bill can be properly consulted on.

PWSA urges the Committee to insist on pausing the passage of certain, detrimental clauses of the Bill until better solutions are found that do not breach a citizen’s human rights and increase their risk of harm.

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

Yours sincerely,

James O’Brien

Chair

29 May 2026

Prader-Willi Syndrome Australia Ltd

a. 299 Low Head Road, Tasmania, Australia, 7253 | ABN 12 625 483 909

w. www.pws.org.au | e. info@pws.org.au | p. 1800 797 287                                         6

Submission 733

Appendix 1

Characteristics of Prader-Willi Syndrome, mapped to NDIS Impairment categories

NDIS Impairment

PWS impairments (these interact across categories)

Category

• Mild to moderate intellectual disability (universal)
• Global developmental delay (universal in childhood)
• Slow processing speed

1. Intellectual - Reduced working memory

• Difficulty with abstract reasoning
• Learning difficulties across all domains
• Concrete thinking style
• 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)2. Cognitive
• 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
• Hypothalamic dysfunction (universal)
• Hyperphagia / lack of satiety (universal hallmark)3. Neurological
• Temperature regulation problems (universal)
• Sleep disorders (excessive daytime sleepiness; sleep apnea)

Prader-Willi Syndrome Australia Ltd

a. 299 Low Head Road, Tasmania, Australia, 7253 | ABN 12 625 483 909

w. www.pws.org.au | e. info@pws.org.au | p. 1800 797 287                                         7

Submission 733

NDIS Impairment

PWS impairments (these interact across categories)

Category

• Low muscle tone (hypotonia) persisting into adulthood
• Poor pain sensitivity
• Autism-like traits
• Seizures (less common)
• Autonomic dysfunction
• Reduced energy levels and fatigue
• Reduced visual-motor integration
• Skin picking (very common)
• Rectal picking
• High pain threshold (common)
• Sensory seeking behaviours

4. Sensory

• Sensory defensiveness (noise, touch)
• Reduced proprioception
• Vision issues (strabismus, myopia)
• Auditory processing difficulties
• Neonatal hypotonia (universal)
• Short stature (universal without GH therapy)
• Poor muscle strength (universal)
• Reduced stamina and endurance (universal)
• Dental problems
• Scoliosis
• Gait abnormalities
• Small hands and feet5. Physical
• Obesity (inevitable without strict management)
• Reduced fine and gross motor skills
• Osteoporosis/low bone density
• Respiratory issues
• Delayed puberty / hypogonadism
• Gastroesophageal reflux
• Decreased vomiting
• Hormonal problems such as diabetes
• Speech delay (universal in childhood)
• Articulation difficulties (universal to varying degrees)

6. Communication - Reduced expressive language

• Limited vocabulary
• Slow speech rate

Prader-Willi Syndrome Australia Ltd

a. 299 Low Head Road, Tasmania, Australia, 7253 | ABN 12 625 483 909

w. www.pws.org.au | e. info@pws.org.au | p. 1800 797 287                                         8

Submission 733

NDIS Impairment

PWS impairments (these interact across categories)

Category

• Pragmatic language difficulties (social communication)
• Difficulty interpreting social cues
• Less common: selective mutism-like behaviours
• Confabulation
• Hypernasal speech
• Poor self management
• Poor self care
• Low volition

7. Psychosocial

• Reduced insight
• Difficult moods
• Disheveled appearance and/or odour (= social barrier)

Prader-Willi Syndrome Australia Ltd

a. 299 Low Head Road, Tasmania, Australia, 7253 | ABN 12 625 483 909

w. www.pws.org.au | e. info@pws.org.au | p. 1800 797 287                                         9

Submission 733

Appendix 2: Clinical overview of PWS

Prader‑Willi Syndrome  is a rare,  lifelong, multi‑system genetic disorder with a  distinct and

well‑established neuro-behavioural phenotype9. 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. 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 providers10.

9 Behavioral features in Prader-Willi syndrome (PWS): consensus paper from the International PWS Clinical Trial Consortium - PubMed, 2021 10 Meeting with professionals – Adults with PWS https://ipwso.org/information-for-families/adult-life/meeting with-professionals/

Prader-Willi Syndrome Australia Ltd

a. 299 Low Head Road, Tasmania, Australia, 7253 | ABN 12 625 483 909

w. www.pws.org.au | e. info@pws.org.au | p. 1800 797 287                                        10