Submission 398
Submission to theSenate Community
Affairs Reference Committee
National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026
Angelman Syndrome Association
Australia
May 2026
Submission 398
Table of Contents
ExecutiveSummary…………………………………………………………………………………………………….2
Recommendations……………………………………………………………………………………………………..2
AboutAngelmanSyndromeAssociationAustralia…………………………………………………………..5
AboutAngelmanSyndrome…………………………………………………………………………………………5
KeyLegislativeConcerns……………………………………………………………………………………………..6
1.ProtectingPeoplewithProfoundDisabilityfromUncheckedFundingChanges………….6
2.Disability-RelatedHealthSupportsandCommunicationDisability……………………………6
3.ParentalResponsibility……………………………………………………………………………………….7
4.SCCPCutsandAdultswithAngelmanSyndrome……………………………………………………9
5.MinisterialDeterminationsandtheRisktoEveryPartofaParticipant’sPlan…………..10
6.SILCommissioningandtheRiskofaOne-Size-Fits-AllModel…………………………………11
7.ProtectingIntensiveEarlyInterventionTherapiesforChildrenUnder12…………………12
8.RequirementtoExhaustAllAppropriateTreatmentOptions………………………………….13
9.FunctionalCapacityAssessmentsMustReflectContext………………………………………..13
10.MinisterialPowers,PlanRenewalsandIndependentReview……………………………….13
Conclusion……………………………………………………………………………………………………………….14
VoicesfromOurCommunity………………………………………………………………………………………15
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Submission 398
Executive Summary
Angelman Syndrome Association Australia (ASAA) welcomes the opportunity to make this submission to theSenate Inquiry into the National DisabilityInsurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026(Bill).
ASAA is an all-volunteer registered charity representing individuals and families across Australia living with Angelman syndrome, a rare lifelong neurogenetic condition associated with severe-to- profound intellectual disability and multiple permanent impairments.
People living with Angelman syndrome sit squarely within the cohort the National Disability Insurance Scheme (NDIS) was designed to support:peoplewith permanent and significant disability who require substantial, ongoing and highly individualised assistance to live safely and participate in everyday life.
As parents and carers of people living with Angelman syndrome, we understand the importance of a sustainable NDIS. The Scheme must remain viable for future generations. However sustainability cannot come at the expense of safety, dignity, human rights or meaningful inclusion for people with complex, profound and lifelong disability.
Our community is deeply concerned that aspects of the proposed legislation would shift the NDIS away from its original purpose as an individualised, rights-based scheme. For participants with complex lifelong support needs, including people with Angelman syndrome, the cumulative impact would be severe and irreversible.
ASAA does not support the passage of this Bill in its current form.
Our primary recommendation is that participants withprofound disability, including people living with Angelman syndrome, be protected as a cohort from Ministerial powers that could reduce funding or support ratios across whole categories of support or participants.
For the purposes of this submission, ASAA uses the termprofound disabilityto describe people living with:
● severe-to-profound intellectual disability ● disability-related health support needs ● intensive behaviour support needs ● severe communication disability ● multiple impairments ● requiring 24/7 high intensity support.
This cohort clearly represents the people with significant and permanent disability the NDIS was originally intended to support.
If that central protection is adopted, it would substantially reduce many of the risks identified in this submission. The recommendations that follow set out both the measures needed to give effect to that protection and the safeguards that should apply if it is not accepted in full.
Any reform to the Scheme must be risk-proportionate. For NDIS participants living with Angelman syndrome and their families, that means meaningful protections must be in place before any changes take effect.
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Recommendations
Recommendation 1is ASAA’s primary recommendation.If adopted, it would substantially address many of the risks identified throughout this submission.
The recommendations that follow(2-16)set out the protections required either to give effect to that core recommendation or, ifRecommendation 1is not accepted in full, to mitigate the most serious risks for people with Angelman syndrome and others in this high-risk cohort.
Recommendation 1.Establish a protected cohort of participants withprofound disability, including severe-to-profound intellectual disability, disability-related health support needs, intensive behaviour support needs, severe communication disability, multiple impairments, and a need for 24/7 high-intensity support. Shield this cohort from blanket Ministerial cuts to support categories, staffing ratios or funding allocations.
Recommendation 2.Require any Ministerial rule, supportratio change or funding cut to undergo a specific impact assessment for participants withprofound disability, including rural and remote participants, before taking effect, with a carve-out where safety or wellbeing would be compromised.
Recommendation 3.Amend the Bill to make clear thatdisability-related supervision, personal care, behavioural support and therapeutic assistance for children withprofound disabilityare not treated as ordinary parental responsibility.
Recommendation 4.Ensure the parental responsibilityprovisions do not deny, delay or reduce essential disability supports for secondary school-aged children withprofound disability.
Recommendation 5.Do not apply the proposed 50% SCCP cut to young people aged 13 to 18 withprofound disability, recognising that supervised supports are often the only alternative to full-time parental care outside school hours and during holidays.
Recommendation 6.Do not apply the proposed 50% SCCP cut to adults withprofound disabilitywho require 1:1 or higher individualised support ratios to access community life safely.
Recommendation 7.Any replacement community participation model should be required to demonstrate, before existing SCCP funding is reduced, how it will safely and effectively support participants with complex behaviour support needs, severe communication disability and a need for individualised support ratios.
Recommendation 8.Exempt personal care, behaviour support, Supported Independent Living (SIL) staffing ratios and support coordination for participants withprofound disability from standardised Ministerial reductions, unless an individual safeguarding assessment demonstrates the change is safe.
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Recommendation 9.Protect individualised SIL funding and living arrangements by ensuring no commissioning or block-funded accommodation model reduces a participant’s choice, control, safety or ability to hold providers accountable.
Recommendation 10.Ensure children withprofound disabilityunder 12 have sufficient capacity building funding to access intensive multidisciplinary therapies where clinically indicated.
Recommendation 11.Protect children under 12 with permanent neurogenetic conditions from any requirement to exhaust all treatment options before accessing the NDIS.
Recommendation 12.Exclude participation in clinical trials from the definition of “all appropriate treatment options” under proposed section 25A.
Recommendation 13.Protect disability-related health supports from standardised funding reductions and require additional safeguarding protections for participants with severe communication disability before any policy or funding change is applied to their plans.
Recommendation 14.Require functional capacity assessments for participants with profound disability to account for the role of existing supports in enabling function and not treat supported performance as baseline capacity.
Recommendation 15.Ensure all alterations to participant plans, including plan renewals, remain reviewable decisions with access to independent review through the Administrative Review Tribunal.
Recommendation 16.Subject Ministerial rule-making powers to parliamentary oversight and genuine co-design with disability communities before any new support determination takes effect.
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About Angelman Syndrome Association Australia
ASAA is the national peer support and advocacy organisation for individuals and families living with Angelman syndrome across Australia. The ASAA Committee is made up of parents of people living with Angelman syndrome and reflects all ages and life stages.
ASAA is a member of the Australian Government-fundedDisability Representative Organisation (DRO) Consortiumfor people with intellectual disabilityand chromosomal variation, led by Down Syndrome Australia.
In preparing this submission, we have engaged with our Angelman syndrome community and have included their stories and reflections, with permission.
About Angelman Syndrome
Angelman syndrome is a rare neurogenetic condition associated with severe-to-profound intellectual disability and lifelong, significant impairment across all functional domains. There is currently no cure or treatment.
People with Angelman syndrome have little or no verbal speech, significant communication disability, marked limitations in learning, decision-making and daily living skills, and substantial motor and coordination difficulties. Many also experience severe epilepsy, gastrointestinal complications, incontinence, anxiety, sleep disorder and behavioural dysregulation.
A defining feature of Angelman syndrome is the need for continuous supervision and safeguarding. Many individuals have limited awareness of danger, cannot reliably communicate pain, distress or risk, and may wander, fall, self-injure, engage in pica (ingesting non-edible objects) or show other behaviours that place them at risk of serious harm. Severe sleep disturbance is common and may require active overnight support, contributing to chronic exhaustion for families and carers.
These needs continue across childhood and adulthood and typically require life-long coordinated multidisciplinary care, including positive behaviour support and allied health input.
People with Angelman syndrome typically requirehighlyindividualised, intensive 24/7supportto remain safe. This includes at least 1:1 assistance with personal care, communication, mobility and community participation, as well as assistive technology for mobility, communication and daily living. Many require home modifications, and some also need vehicle modifications for access, safety and participation.
A multidisciplinary approach and consensus statement to establish standards of care for Angelman syndrome1, published in 2021, provides an evidence-based framework for the management of Angelman syndrome. The paper documents the complexity of care outlined within this submission.
Research2shows that parents of children with Angelman syndrome report very high levels of psychological distress, reflecting the cumulative impact of chronic sleep deprivation, seizure monitoring, constant supervision, intensive personal care, and challenging behaviours. The support needs of people with Angelman syndrome affect not only the individual, but also the sustainability, health and wellbeing of the entire family system.
1A multidisciplinary approach and consensus statementto establish standards of care for Angelman syndrome
2Psychological well-being in parents of children withAngelman, Cornelia de Lange and Cri du Chat syndromes
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Key Legislative Concerns
1. Protecting People with Profound Disability from Unchecked Funding Changes
Our central ask is that participants withprofound disabilitybe protected from unchecked Ministerial powers that allow funding to be reduced across entire support categories. This cohort includes people living with Angelman syndrome and it clearly reflects the group the NDIS was originally designed to support.
This is a minimum safeguarding requirement for participants whose safety, health, wellbeing and rights are at heightened risk if essential supports are reduced.
The proposed legislation gives the Minister power to implement cuts across any support category, support ratio or funding bucket without the need for additional primary legislation. The proposed 50% reduction to Social, Civic and Community Participation (SCCP) budgets and 10% reduction to Capacity Building Daily Activities (CBDA), commencing 1 October 2026, is the first and most visible application of this power. But the mechanism is not limited to SCCP and could extend to personal care ratios, behaviour support funding and SIL staffing. These categories represent the parts of a plan that people with Angelman syndrome depend on for safety. The full scope of this risk is addressed in Section 5 of this submission.
Any blanket change that applies uniformly across the participant population will, by definition, apply to this cohort, for whom the consequences are far more than inconvenience.They create a genuine risk of injury, abuse, crisis or institutionalisation.A risk-proportionate approach to reform means protecting those with the highest vulnerability and the most complex needs first.
This risk is even greater for participants and families in regional, rural and remote areas, where service markets are already thin or non-existent. For these families, a funding cut may not just reduce access to a support; it may remove it altogether. Any protected cohort framework should account for this heightened vulnerability.
ASAA seeks urgent confirmation of amendments to the Bill so that participants with profound disability are excluded from unchecked Ministerial powers that would reduce supports in ways that compromise safety, wellbeing or dignity.
2. Disability-Related Health Supports and Communication Disability
The Angelman syndrome community asks the Committee to recognise some specific support domains as requiring protection within the legislation or associated rules:
● Disability-Related Health Supports
Many participants with Angelman syndrome require disability-specific supports arising directly from the nature of Angelman syndrome and associated impairments including:
● epilepsy management including emergency medication
● continence support including complex bowel care
● mealtime management including dysphagia (swallowing) support
● PEG feeding, dietary management, gastrostomy care
● ventilation support for respiratory issues.
Any framework that treats them as standard parental responsibility, general health responsibilities, or subjects them to standard NDIS funding cuts, will leave people without essential and sometimes life-critical support.
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● Severe Communication Disability as a Safeguarding Issue
The vast majority of people with Angelman syndrome have little or no verbal speech, alongside severe-to-profound intellectual disability. Many are unable to report abuse, neglect, pain, fear, distress or unsafe care, and cannot effectively advocate for themselves in planning, review or complaints processes. They depend on trusted family members, carers and skilled support workers to recognise risk, interpret communication, identify deterioration and speak on their behalf. This creates a profound safeguarding vulnerability.
When supports are reduced, trusted arrangements are disrupted, specialist therapies are withdrawn and oversight is weakened, the risk of serious harm increases. For this cohort, funding and policy decisions directly influence whether a person remains safe.
Participants with intellectual disability and severe communication disability therefore require additional protections, including individualised safeguarding assessments before any funding or policy change is applied to their plans.
3. Parental Responsibility
The new parental responsibility provisions in the Bill create distinct and serious concerns at different life stages. Those concerns differ by age group, and we address each in turn.
Children Under 12: Disability-Level Care Misread as Ordinary Parenting
The Bill sets a standard for what parents are expected to provide, including supervision, personal care, transport, emotional support, behavioural support and assistance with activities of daily living. It also requires the CEOnotto approve a support whose primary purpose is to reduce parental burden below what is reasonably expected.
From the earliest years, parents of children with Angelman syndrome are often providing a level of care that bears no resemblance to ordinary levels of parenting. This includes:
• Constant supervision due to seizure risk, wandering, pica (ingesting non-edible objects) and complete lack of danger awareness • Intensive overnight support, often for years, due to severe and chronic sleep disorders causing frequent waking, extended periods of night-time wakefulness and wandering • Specialised feeding support for dysphagia management, continence and bowel care and medical management • Intensive therapy assistance and supports across speech, occupational therapy, physiotherapy and behaviour support, far exceeding what the health or education systems can provide within their standard offerings • Communication support which requires significant time, specialist knowledge and consistency across all environments. Since people with Angelman syndrome cannot speak, type, write or sign, Augmentative and Alternative Communication (AAC) systems are often their best chance at being able to communicate.
None of these supports, at the level of input and intensity required, can reasonably be considered ordinary parenting responsibilities. This is documented in research3showing that parents of children with Angelman syndrome report very high levels of psychological distress associated with the care they provide.
3Psychological well-being in parents of children withAngelman, Cornelia de Lange and Cri du Chat syndromes
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Supports for Assistance with Daily Living (ADL) and SCCP provide essential disability-related support for people living with Angelman syndrome. They also provide much-needed respite and help parents sustain care for all of their children, and in many cases remain in paid work. Yet the proposed provisions create a legal framework in which the National Disability Insurance Agency (NDIA) must consider whether the primary purpose of a support is to reduce parental burden and decline it if that is the case.
We are concerned that this framing risks treating the intensive disability-related care provided by parents of children with Angelman syndrome not as an extraordinary burden arising from profound disability, but as the baseline expectation of any parent. That conflation is both unjust and inaccurate.
Community Voice
“Parental responsibility for a child under 18 typically involves age-appropriate supervision and meeting basic developmental and daily needs. In contrast, X requires 24/7 active supervision, epilepsy management, complex medical and bowel care, specialised behaviour support, and supported communication.This is not typical parenting; it is the equivalent of delivering full-time disability and healthcare within the home.”
- School Age Parent
Community Voice
“I dream of ordinary parental responsibility every day….. Each of our tasks as carers can neatly fit into the term parental responsibility because the tasks of caring are the tasks of parenting as listed in the bill: “personal care, supervision, emotional support, transport, behavioural support”. However, the constancy, the complexity, the physical labour, and the emotional toll of the “carer” version of parenting is radically dissimilar from ordinary parenting in the intensity and extent of its demands. The expanded definitions not only risks making the caring work of parents of children with a disability invisible, but also risks failing to support children and families through moments where such extraordinary levels of parental responsibility cannot be sustained.”
- School Age Parent
Young People Aged 13 to 18: Where Parental Responsibility and SCCP Cuts Converge
For secondary school students with Angelman syndrome, the parental responsibility provisions and the proposed 50% SCCP cut operate together to create a compounding harm that is not present at any other life stage.
Unlike younger children, for whom some structured daytime supervision may exist through early education systems, secondary school students with profound disability have no equivalent. There is typically no Out of School Hours Care (OSHC), holiday program or other structured supervised option available or appropriate for this age group. In rural and remote communities, the lack of options is even more acute. This means NDIS-funded SCCP supports are often the primary mechanism through which families can access supervised care that allows their children to socialise and participate in community activities independently of their parents, as their non-disabled peers do. Without this funding, a parent must be present and provide active 1:1 care at all times outside school hours and during holidays.
The parental responsibility provisions increase the threshold at which the NDIA must fund disability-related care for children in this age group. The SCCP cuts simultaneously reduce the
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funding available for the supervised supports that currently help parents remain in employment. The combined effect will place families under significant additional pressure.
For many families in our community, SCCP-funded supervised support is what allows a parent to remain in the workforce. A 50% reduction in SCCP funding, combined with a legal framework that treats more of this care as the family’s responsibility, means many parents will have no viable option but to leave work.
The long-term consequences of forcing parents of teenagers with Angelman syndrome out of the workforce are significant. They include financial strain, reduced carer sustainability, greater reliance on crisis services, and an earlier onset of the ageing carer crisis our community already faces. ASAA also notes the government’s own analysis identifying the likely disproportionate impact on female caregivers.
Adults
While the legal concept of parental responsibility applies only to minors, in practice the NDIA often treats adults living at home as though substantial parental care can still reasonably be expected, and use assumptions about “informal support” to reduce or limit funded supports. This creates a serious concern that the Bill may reinforce or extend that reasoning for adult participants.
4. SCCP Cuts and Adults with Angelman Syndrome
The proposed 50% reduction to SCCP budgets from 1 October 2026 will have severe consequences for adults with Angelman syndrome and their families.
For adults with Angelman syndrome, SCCP funding is the mechanism through which they engage in physical activities and exercise, access adult services and programs, participate in community activities, skill-building and vocational programs, and maintain social connection.
Any significant reduction in social and community access is likely to increase social isolation, anxiety, distress and behaviours of concern, including self-injury. It may also increase reliance on psychotropic medication and restrictive practices to manage preventable deterioration.
For families of adults with Angelman syndrome, many of whom are ageing parents, access to SCCP supports is what makes continued employment, or any life outside full-time caring, possible. When an adult with Angelman syndrome can no longer access the community because funding or support ratios are cut below what is needed for safe support, the care does not disappear; it returns to the family.
Community Voice
“My son attends his day service where he has been developing his daily living and independence skills as well as his art skills and a potential pathway to employment.He does not go there to hang out. He needs 1:1 funding because he is unable to do most tasks unsupported,and due to his behaviours, a reduced ratio would put him at risk and prevent him from continuing to develop his skills. If he could not attend, we, his ageing parents, would need to provide full-time care, we would not be able to continue to work and our ability to participate in community activities would be significantly reduced.“ - Parent of 23 year old
Even in group-based community programs, most adults with Angelman syndrome cannot safely participate without dedicated 1:1 support. For some participants with intensive behaviour support needs, a 2:1 ratio is required. The government has indicated that a $200 million Inclusive Communities Fund will support group-based community participation as an alternative. For many
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people with Angelman syndrome, however, group-based models without individualised support will remain inaccessible unless 1:1 supervision is provided to ensure safe and appropriate participation.
For adults with Angelman syndrome in regional, rural and remote areas, day programs and community participation providers able to meet these intensive and complex support needs are often scarce or absent. A cut that reduces already marginal funding levels for providers in these areas could end access to community life altogether, especially where there is no realistic Inclusive Communities Fund alternative within reach.
5. Ministerial Determinations and the Risk to Every Part of a Participant’s Plan
SCCP is the first scheduled cut under the proposed legislation, but it may not be the last. The Bill creates a mechanism through which the Minister can impose cuts across any support category, support ratio or funding allocation under a support determination instrument, without the need for additional primary legislation. For the Angelman syndrome community, this poses a serious risk because it means every part of a participant’s plan could be subject to future reduction. People with Angelman syndrome rely on a carefully constructed ecosystem of supports that work together. Reducing any single element does not simply trim a cost; it can destabilise the entire arrangement.
The disability-related supports most at risk include:
● Personal Care and Disability-Related Health Support
Many participants with Angelman syndrome require 1:1 or higher-ratio personal care for hygiene, continence and complex bowel management, feeding and dysphagia management, mobility and seizure monitoring. These are essential supports that reflect the complete dependence of many individuals on assistance for every activity of daily living. Any cut to ADL funding, or any reduction in permitted staffing ratios, could directly compromise the safety, health and dignity of participants living with Angelman syndrome. In regional, rural and remote areas, where personal care workers are already difficult to recruit and retain, funding reductions also risk undermining workforce availability.
● Behaviour Support
Intensive positive behaviour support is essential for many people with Angelman syndrome. It requires qualified practitioners, consistent implementation of strategies and regular review, and cannot be meaningfully delivered on a reduced funding allocation. Cuts to behaviour support could increase the likelihood of behavioural escalation, crisis presentations, authorised and unauthorised restrictive practices, and harm, with the consequences ultimately falling on families, emergency services and the health system. In regional, rural and remote communities, qualified behaviour support practitioners are already among the scarcest NDIS workforces. Waitlists can be long, and support may only be available by telehealth. Any funding reduction in this category could remove a service that is already scarce.
● Allied Health: Including Speech Therapy, Occupational Therapy and Physiotherapy
The proposed 10% cuts to CBDA funding proposed under Ministerial Direction will directly affect access to allied health specialists. Allied health therapists support critical functions for people with Angelman syndrome, including ongoing therapeutic input to maintain and develop functional capacity and the assessments required to access assistive technology (AT). Cuts to allied health funding can create downstream barriers to AT, significantly reducing a participant’s independence, safety and quality of life. Speech therapy, for example, is central to communication development, which is directly linked to behaviour and safeguarding outcomes for people with Angelman syndrome. In rural and remote areas, allied health providers already face barriers to remaining financially viable. Reduced pricing or funding could further limit their capacity to travel to and serve these communities.
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● Supported Independent Living Ratios
Many adults with Angelman syndrome live in their own homes with SIL arrangements built around essential staffing ratios. These ratios reflect the genuine level of supervision and support required for the individual to live safely outside the family home. Some require a 2:1 ratio because of clinical complexity or intensive behaviour support needs, and may be assessed as unsafe or unsuitable to co-tenant. Shared support models are not always suitable for adults living with Angelman syndrome and, in regional, rural and remote settings, may not be possible at all. Families fear that funding cuts could make accommodation entirely unviable, leaving people with nowhere to live or forcing families, where they have capacity, to resume care. The consequences of SIL funding cuts are not hypothetical. Our community has already experienced them.
● Support Coordination
Because of the complexity of needs associated with Angelman syndrome, effective support coordination typically requires far more time and expertise than standard allocations allow. Cuts or caps to support coordination could leave the most complex participants and their families without the assistance they depend on, resulting in support gaps, crisis presentations and family breakdown. This is particularly serious in rural and remote areas, where support coordinators are often the only professional link between a family and the broader service system.
Community Voice
“We already know the consequence of cuts to SIL budgets.Our daughter who is 35 years old moved into a SIL house four years ago with two other participants and relies on a combination of 1:1 and 1:3 funding. Last year her SIL budget was cut by 25% when she received her new plan. The SIL provider then reduced supports for all participants in the house to make up the shortfall in funds, without telling families, who only found out when an incident occurred that had serious safety implications. While we fought the NDIS for a year to restore that funding, we had to regularly bring our daughter home because the SIL provider would not provide the support levels required to safely care for the three participants. We are in our 70s. We worry about what will happen to our daughter if SIL funding is cut in the future and we are no longer able to take on her care. Our story is included in Voices from Our Community section for this submission” - Parent of Adult living out of home
6. SIL Commissioning and the Risk of a One-Size-Fits-All Model
Beyond the immediate risk of SIL ratio cuts, the Angelman syndrome community is concerned about a shift to a commissioned model for SIL supports for several reasons:
● Loss of Choice and Control
A commissioned SIL model would reduce participant choice and control by shifting decision-making away from the individual and toward providers or system-level purchasing decisions, and appears to point toward more group-home style arrangements. For people with Angelman syndrome, supports cannot safely be standardised or averaged across a household because health supports, communication needs, behaviour and risk profiles are highly individual.
● Decisions Made Further Away From the Participant
The SIL community voice quoted above illustrates a risk that already exists and would be amplified under a commissioned model. When a provider’s funding is reduced or constrained, the provider
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makes operational decisions about how to absorb that reduction, and participants and families are not always informed. In a commissioned model, where the NDIA’s relationship is primarily with the provider rather than the individual participant, participants and their families become even further removed from decisions that directly affect the participants safety and quality of life. For people who cannot easily report unsafe care, that loss of visibility and control creates a serious safeguarding risk.
● Health literacy in Commissioned SIL
Commissioned SIL arrangements must demonstrate high levels of health literacy so providers can safely meet the intensive and complex disability-related health support needs associated with Angelman syndrome. This includes understanding seizure management, sleep disorders, mobility and communication challenges, and the interaction between behavioural and medical complexity. Without this depth of knowledge, commissioned SIL risks compromising safety, quality of care and the dignity of individuals whose needs cannot be standardised or simplified.
● Risk of Disruption to Existing Homes
Many people in SIL have long-established homes, routines and trusted support relationships. Any shift toward a commissioned or consolidated model risks disrupting these arrangements in ways that reduce stability, choice and safety. For people with Angelman syndrome, that disruption can have immediate behavioural, health and practical consequences.
7. Protecting Intensive Early Intervention Therapies for Children Under 12
Early and intensive therapy is essential for children with Angelman syndrome under 12 years of age. During this developmental window, access to speech pathology, occupational therapy, physiotherapy and positive behaviour support can meaningfully improve a child’s communication, mobility, regulation and quality of life across the lifespan. This includes funding for regular multidisciplinary therapy sessions and intensive therapy programs such as the NAPA4program. The evidence5for intensive early intervention in neurodevelopmental conditions is well established. Early investment is far more cost-effective than the lifetime cost of unmet need.
Intensive therapies are funded through capacity building supports, and the proposed 10% reduction to CBDA creates a risk that therapy funding during the early intervention window will be reduced. It is imperative that these cuts do not create a barrier to accessing clinically indicated therapies.
Community Voice
“My son (6yrs old) has completed 5 rounds of Intensive Therapy over the past 3 years. We live in a semi-rural area with limited access to local supports and services, meaning the options for him to receive weekly therapy are slim.We travel nearly 2hrs each way daily for him to participate in these Intensiveson the Gold Coast, where he continues to work towards his goals and milestones.
Without regular Intensive Therapy sessions, he would not be moving independently, communicating with his family and peers, and meaningfully contributing to his school community. He completed his first Intensive at the age of 3 and has since then continued working through many more Intensives which have significantly increased his abilities.Abilities that would not be currently present if this option of therapy was unavailable to him at such an early age.If this therapy pathway is out of reach for newly diagnosed families, the consequences would be life detrimental for all concerned. It would essentially mean more services and support would be required in the long term due to the lack of early intervention.” - Parent of 6 Yr Old
4https://napacentre.com.au/ 5https://napacentre.com.au/wp-content/uploads/2025/06/2025_AU_Medical-Booklet_web.pdf
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8. Requirement to Exhaust All Appropriate Treatment Options
The proposed requirement in section 25A of the Bill that families demonstrate they have exhausted “all appropriate treatment options” before accessing the NDIS creates a critical risk of delay during this developmental window. For Angelman syndrome, a permanent neurogenetic condition for which there is currently no cure, this requirement is clinically unjustified. There are no treatments that will remove the underlying disability or render NDIS support unnecessary.
Requiring families to pursue treatment pathways before accessing the Scheme serves no clinical purpose and could cause real harm through delay. For families in rural and remote areas, this provision creates an additional injustice, because specialist paediatric services are often unavailable or subject to significant waitlists, making the expected treatments difficult or impossible to access.
We are also concerned that the legislation, as drafted, does not exclude participation in clinical trials from the definition of “appropriate treatment”. Research into precision medicine and targeted therapeutics for neurodevelopmental conditions continues to grow in Australia. Requiring families to participate in, or demonstrate they have considered, a clinical trial as a precondition for NDIS access would be ethically unacceptable. A clinical trial is an experimental intervention, not an established treatment. It carries inherent risks and uncertainties. Participation is a decision that belongs entirely to families. Declining to participate should never jeopardise a child’s disability support entitlements.
9. Functional Capacity Assessments Must Reflect Context
The proposed standardised functional capacity assessment framework raises concerns for our community. Functional capacity for people with Angelman syndrome cannot be meaningfully measured in isolation from the supports that are already in place.
A person with Angelman syndrome may appear to function safely at home because a family member is providing constant 1:1 supervision. They may appear regulated in the community because a trusted support worker who knows their communication signals is present at all times. They may appear stable because their behaviour support plan is being implemented consistently.Remove any of those supports and the apparent function disappears immediately.
There is a real risk that standardised assessments capture a participant’s supported state and misinterpret it as baseline capacity, rather than recognising that the supports themselves enable that function. For our community, this could mean assessments underestimate need, reduce funding, and remove the very supports that produced the functional outcome being measured.
Functional capacity assessments for participants with profound and complex disability must explicitly account for the role of existing supports in enabling function. The contextual circumstances component of the assessment should also be given equal legal weight to the standardised tool in planning decisions.
10.Ministerial Powers, Plan Renewals and Independent Review
The Bill expands the Minister’s power to make rules that define, limit or cut supports, including the ability to alter renewed plans without participant involvement and without those alterations being reviewable decisions.
For the Angelman syndrome community, and for the reasons set out throughout this submission, these powers create profound risk and uncertainty. Participants with Angelman syndrome depend on family members and carers to advocate for them, yet plans may be altered without meaningful involvement, without independent review, and in ways that permit Scheme-wide cuts to the supports they rely on to remain safe.
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Robust independent review through the Administrative Review Tribunal (ART) is one of the few safeguards available to families of people with Angelman syndrome when challenging unsafe or inadequate decisions. Any weakening of these rights through expanded, unchecked Ministerial powers, unreviewable plan alterations or reduced access to the ART increases the vulnerability of participants who have no other recourse.
Any alteration to a participant’s plan should remain a reviewable decision, and ministerial rule-making powers should be subject to meaningful parliamentary oversight and genuine co-design with disability communities before taking effect.
“The community is not only concerned about what is being cut now.It is concerned about what this legislation makes possible next.A mechanism that allows any support category to be reduced by Ministerial rule without primary legislation, without specific impact assessment for high-complexity participants, and without guaranteed review rights, is a mechanism that will be used again. The Angelman syndrome community cannot plan safely for the future under those conditions.”
Fiona Lawton - President ASAA
Conclusion
The current Bill and proposals are layered onto years of rolling reform, changing rules and repeated uncertainty from the NDIA, all of which have already placed significant pressure on families. For many in our community, confidence in the system has been seriously eroded. Families cannot safely plan for housing, work, care arrangements or their child’s long-term future when they cannot be confident that essential NDIS supports will remain in place. That uncertainty is damaging the trust in the Scheme we fought hard for and our loved ones with Angelman syndrome need.
ASAA urges the Committee to recommend substantial amendments to the Bill to ensure any reform to the NDIS is safe, fair, reviewable and proportionate to risk for the people who depend on it the most.
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Submission 398
Voices from Our Community
Early Years
Voice 1 The plan for our 3 year old child living with Angelman syndrome (deletion) provides: 1) Capacity building: Twice weekly physiotherapy, weekly hydrotherapy, weekly occupational therapy and weekly speech therapy. Our child also undertakes 1-2 intensive physiotherapy sessions per year of between 2-3 weeks. 2) Consumables budget: Fluid thickeners (for dysphagia), tall ankle shoes, and orthoses 3) Assistive technology: Equipment repairs
The following changes to the NDIS Act are of concern for our family: Requirement for a person to try ‘all appropriate treatment’ before accessing the NDIS:There is no clarity on the length of time or intensity such treatment would be required for, particularly for young children with speech, gross and fine motor delays where the treatment options are usually limited to early intervention therapies such as physiotherapy, occupational therapy and speech therapy (at the cost of approx $193.99/hour). It is not uncommon for children to be placed on lengthy waitlists before even accessing therapy, or to be offered therapy appointments which cannot be accepted because of a family’s conflicting commitment (e.g. work). This change has the potential to significantly disadvantage families with financial challenges or a lack of access to therapy options due to their location or family/work commitments.
Our family privately funded our child’s weekly physiotherapy, occupational and speech therapy for a 9 month period prior to his NDIS plan approval at 18 months (including exhausting private health insurance cover and subsidised appointments under GP Care plans via Medicare). There was no ability to be reimbursed for costs incurred for therapy undertaken prior to our child’s plan approval, and it was an extreme financial burden. We would not have been able to continue funding these costs for much longer had our child’s plan not been approved.
Reassessments arising only where needs or circumstances significantly change including “unanticipated changes’ for personal or environmental circumstances:There is no clarity on what “unanticipated” means. Our family recently decided to move from the property our child was raised in from birth because we knew that it was not suitable for him long term. Our new property is significantly more accessible, but it will likely require modifications as our child grows older (e.g. ramps for steps or bathroom renovations). Caring for someone with a lifelong disability requires carefully planned decision making on matters such as living arrangements - it is seldom “unanticipated”.
Our child’s need for additional support will also change and increase as he will be welcoming a sibling in 3 months. Again, it is by no means clear whether such change would be considered “unanticipated”.
Caps in statements of supports:Frequent physiotherapy,occupational therapy and hydrotherapy (at least weekly) has proven most beneficial for developing our child’s gross and fine motor skills. Our child also accesses speech therapy which includes regular feeding assessments, as he has dysphagia. If a decision was made to cap the amount of hours of therapy our child could access, this has the potential to place him at risk of aspiration or swallowing difficulties.
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Submission 398
Voice 2 The Bill proposes additions to criterion that effectively increases the amount of support the NDIA expects families and other informal supports to provide.
This week, my mother broke her leg while walking down the foot path. It was an accident that could so easily have happened to any of us, but it exposed to me what a delicate tower of cards supports our son with Angelman syndrome. My mother is only one part of our informal support network, because she is also a carer for my father following his stroke.
Yet her small part of our support is essential: with the loss of the 3-4 hours of weekly support that she provides to our son, I now need to meet with my work to negotiate 6 months of reduced hours on what is already a part time role due to my responsibilities as a carer. This temporary loss of informal support risks my employment, my ability to contribute as a tax paying citizen, and my mental health - as my work is often the only part of my week that feels like I can achieve something beyond survival.
The other side of informal supports is that we are the supports for them when the tables are turned, doubling the impact of the loss of this support. As my mother is also the primary carer to my father, I now need to find the capacity to co-ordinate and provide care for both my parents along with my child with a complex disability. The changing focus of the NDIS towards more informal support networks on paper sounds logical but it is moments like this when an informal network suddenly disappears, for reasons beyond anyone’s control, that have a huge ripple effect. And while a broken leg won’t happen to every informal support network, across the lifespan of every person with a disability, informal support networks will fluctuate in their capacity.
For kids on the NDIS, the Bill says the NDIA must remember parents are responsible for providing a substantial amount of support for their children (something parents themselves are unlikely to forget). Because ‘substantial’ is one of those subjective words the government finds annoying right now, the Bill defines it as: personal care, supervision, emotional support, transport, behavioural support and anything else reasonable to expect given the age of the child.
1) Changes to “parental responsibility” (Section 34) The Bill intends to expand the definition of “parental responsibility” to include things like supervision, transport, and emotional and behavioural support. This will mean that by law, even if a child requires intensive care, the NDIS can dismiss it as “ordinary parenting duties”. We are concerned these changes could put extra pressure on parents, lock children out of the NDIS, and impact the safety and well-being of children and young people with disability.
I dream of ordinary parental responsibility every day. When we go to a playground and watch other families - sitting on picnic rugs, socialising together - while we are our son’s physical support for movement on the playground, his voice for communication, his constant watch dog for seizures and choking risks, and his emotional regulation strategy. We see ordinary parenting and it is so far from our lives and we are so isolated from our communities because of it. Even when we organise to spend time with people who know and love us, it is a challenge of rotating the isolation of caring between parents. We are never both able to join a conversation, a joke, a laugh – those moments that make you feel part of something.
Each of our tasks as carers can be neatly fit into the term parental responsibility because the tasks of caring are the tasks of parenting as listed in the bill: “personal care, supervision, emotional support, transport, behavioural support”. However, the constancy, the complexity, the physical labour, and the emotional toll of the “carer” version of parenting is radically dissimilar from ordinary parenting in the intensity and extent of its demands. The expanded definitions not only
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risks making the caring work of parents of children with a disability invisible, but also risks failing to support children and families through moments where such extraordinary levels of parental responsibility cannot be sustained.
The Disability Royal Commission recommended the creationof a specialist “complex disability” team (18.2, 18.3) this has not been made as a commitment as part of this Bill.
Our son has a very complex disability: an intellectual disability which means that he will not mentally develop past the age of 4 and is non-verbal; a physical disability, including that he cannot independently walk and cannot use cutlery to feed himself; and a neurological disability from seizures. When speaking to staff at the NDIA they have not demonstrated an understanding to the complexity of our son’s need. One of the NDIA staff members told me that we were “lucky to even get an iPad” as if we were using it to play games and watch movies instead of starting a very long, complex and emotionally challenging journey to trying to give our son the ability to communicate with the world. To be told we were “lucky” was a slap in the face and demonstrated how little the staff understood the complexities of raising a child with a complex disability. Having a team dedicated to those people whose lives have so many challenges and impairments, as recommended by the royal commission will ensure that services are effectively and efficiently delivered, and that families will not be left to educate NDIA staff on top of the other demand on their labour.
2) Requiring families to exhaust “all available treatment options” (Section 25A)
To get onto the NDIS, the new rules proposed in the Bill say you must prove you have tried “all appropriate treatments” first. It does not consider factors like financial strain or where you live.
I have lived in regional communities for most my adult life. Those towns and the jobs that I held in them were essential to the Australian economy – the export of grain, iron ore and gas, tourism and environmental protection. I am privileged enough that my work and family circumstances allow me to live in the city to access the services and supports that my son needs. However, there are so many families in our community that through personal circumstances cannot make this move, and if forced to move to access treatments, their skills, knowledge and contributions to the small communities that are the backbone of this country are lost.
The literature is clear about the importance on early intervention and the long term benefit to the individual and impact on their ongoing support needs – this need to prove that a child is disabled enough puts that early intervention at risk. How will regional people and families that cannot readily access the facilities and treatments provided in cities how do they demonstrate that they have tried “all appropriate treatments” first? It is unfair to require regional families to outlay huge financial costs for private services or remain on ever growing regional waitlists until they can access the supports that their child with a disability needs. Without considering the context in which treatment is able to be identified, referred and accessed, the policy will entrench inequity.
Section 34A/ 45C the minister can cut funding for any group of participants by up to 99%, with no appeal process and can be made by the minister with immediate effect and no need for public notification. Section 33 2ea Minister can set maximum amount of funding, maximum intensity, maximum worker to participant ratio can be cut by the minister. Only restriction placed on these changes are “participant safety”
There is a great danger in giving a single individual the delegation to make such sweeping and large-scale changes without the oversight of the whole parliamentary system. This bill will give a level of power to one person which we would never allow to apply to our general community. Why is it allowable for people with a disability?
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In addition, allowing changes to be made without public notification and separately to individual’s plans makes it impossible for individuals to stay on top of any changes. This added level of oversight and labour given either to a person with a disability or their carers will add a ongoing burden. The immediate effect of changes will also increase the likelihood of people inadvertently spending funding “illegally” despite it being listed in their plans.
Cannot appeal for a plan review for a change of circumstances unless that change is unanticipated.
This current change in the bill leaves unanticipated change as an extremely ambiguous and up to interpretation.
Individuals with complex disabilities like Angelman Syndrome, and in particular children and youth, have rapid changes to their capacity and their support needs. If the NDIS is issuing plans for periods of up to 5 years but will only make changes based on significant and unanticipated unplanned events, how do individuals and families appeal for changes in supports? The impact from events can unfold over time in unforeseen ways, challenging what ‘unanticipated’ might mean. For example, a child leaving school is an anticipated change but it is a significant change with major adjustments needed to their supports. If leaving school occurs in the middle of a 5 year funding period, will there be a pathway to request changes in their supports? The uncertainty and inflexibility of this change does not centre the rights and needs of people with disabilities.
School Years
Voice 1 Our son X is 7 years old and has extremely high support needs. He needs1:1 assistance froma familiar adult who has been trained in all the complex details of his care, which includes: - Manual handling: X is unable to sit up independently, let alone crawl or walk. He can walk with assistance and uses a manual wheelchair and walker to mobilise with adult support. - Feeding: he is tube fed and requires all nutrition, hydration and medication to be administered via his PEG. - Self-care: toileting and continence aides, washing etc (bathing requires 2:1 manual handling to safely access bath/shower). - Communication: he is beginning to use a low-tech device (PODD book) and high-tech (eye-gaze) device. Without it, his only independent communication is to shake his head “no” and sign “more”; even this requires sustained attention from an adult familiar with his approximation of these gestures. - Complex equipment: the adult must be trained to safely and effectively use X’s wheelchair, walker, frame runner, standing frame, adaptive car seat, orthotics, hi-lo chair, hi-lo bed, feeding pump, eye-gaze communication device, PODD communication book, commode - Complex health needs: preparing and administering medications including rescue medications as required for his epilepsy, and care of PEG site. He has emerging scoliosis and requires postural supports and orthotics. - Behavioural needs: X is not able to assess risk and will unknowingly place himself in danger (eg walking onto a busy road in his walker). His sensory seeking needs can also put him at risk (eg his need for oral stimulation can lead to choking on or swallowing small objects).
It is unreasonable and unrealistic to consider this level of care to be parental responsibility or within the substantial supports expected of a parent.It should go without saying that this is beyond the care needs of a newborn, let alone a seven-year-old boy. X has two younger sisters,
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aged two and four, also requiring a high level of supervision. Previously a teacher in a school leadership role, I have been reduced to minimal casual employment due to X’s care needs. On top of working and managing the household and a family of five, we need to make time to attend X’s medical and therapy appointments. We also have the additional demands of X’sindirect care: duties that continue when he is not physically in our care.These include managing his NDIS supports and plan reviews, paying and claiming invoices, maintaining and trialling equipment, scheduling and preparing for appointments, communicating with therapists and much, much more. This adds up to 6-10 hours per week, the equivalent of a full working day per week on average.
It is unreasonable and unrealistic to attribute X’s care needs to informal supports such as grandparents or friends, as the adult must be trained and up-to-date in all aspects of his care. Care at this level of complexity, subject to frequent change, requires near-daily practice to maintain skills and familiarity, and informal supports are not available to that extent. We already rely heavily on them to care for X’s younger sisters while we take him to therapy and medical appointments; our relatives don’t have capacity to act as a regular support worker as well.
If support worker funding is reduced under the guise of parents providing ‘substantial support’ for their children as part of ‘parental responsbility’, the impact on our whole family would be significant and far-reaching.I would cease to workat all and lose my registration as a teacher. His sisters would have less time and attention from more stressed parents while we tried to meet X’s basic care needs and keep him safe. X would spend many hours in his wheelchair, forced to entertain himself with a toy or a screen, because how can he have the 1:1 support he needs from one parent who is also managing two other young children, a household and the ongoing demands of X’s indirect care?
His hard-won progress in motor skills would decline and his scoliosis would worsen because he wouldn’t get the exercise, changes in posture and mobility he needs. He would lose his voice, because he can’t communicate without 1:1 attention from a familiar adult. Without the ability to talk, he would resort to problem behaviours in an effort to gain attention and communicate his needs. These consequences would reduce his quality of life and independence, slow his development, negatively impact his health and place further stress on our family as a whole. They would also increase the financial cost of X’s care long-term, on both the NDIS and the health system.
If Social, Civic and Community Participation budgets are cut to 50% across all participants, X and by extension, our whole family, will be virtually unable to leave the house or socialise.We cannot safely go out into the community without a familiar trained adult meeting X’s 1:1 care needs and another adult caring for his younger sisters. How can one adult support X with his communication, manual handling, toileting, tube feeding and behaviours while also supervising two- and four-year-old children? This means that if one parent is at work or unavailable, we cannot socialise and R cannot access the community at all.
X relies on visiting parks and playgrounds to walk in his walker because we live on a steep block in hilly neighbourhood and can’t do this at home; without a support worker, he will have to stay home, losing the limited mobility, strength and balance we’ve worked so hard to progress. X loves water and the pool is a motivating environment for him to build motor skills but we won’t be able to go there safely without a support worker. Playdates, catch ups and birthday parties will become impossible for us unless both parents are available. Please don’t dismiss these social experiences as optional extras: everyone needs human connection, the support of ongoing relationships and recreation. A seven-year-old boy should be playing in playgrounds, visiting friends, going to
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birthday parties and swimming at the pool. I shouldn’t have to justify it on the grounds of his physiotherapy. These cuts would affect our whole family. Even now, we are excluded from so many typical experiences and activities due to X’s high needs. As his parents, our mental health has already suffered from the loneliness and anxiety this creates. His sisters have a more limited social life and miss out on extra-curricular activities compared to their peers because of the pressures X’s disability puts on our family.
Sweeping cuts across all participants are not advisable, reasonable or even safe. They do not consider individual needs or the impact of removing these supports.
Voice 2 I live in Melbourne with my husband and our three children, including our daughter X(8), who lives with Angelman Syndrome (AS). My husband and I both work full-time including 2-3 in office days.
X’s current NDIS plan ~$125k funds her daily care, supervised community access (approximately 16 hours per week), therapy (occupational therapy, physiotherapy, speech), behaviour support, and assistive technology. These supports are essential. They enable her to remain safe, maintain her functional abilities, and participate in the community, while allowing us to continue caring for her at home and remain in the workforce.
Angelman Syndrome is a rare, lifelong neurological condition causing profound impairment across communication, cognition, mobility, and self-care. X is non-verbal, has severe intellectual disability, requires constant 1:1 supervision, and lives with epilepsy, significant sleep disturbance, ataxia, and behaviours of concern. She also has complex medical needs, including allergies, G6PD deficiency, and ongoing surgical and bowel care needs. Her care is constant, skilled, and extends far beyond reasonable parental responsibility.
Parental responsibility for a child under 18 typically involves age-appropriate supervision and meeting basic developmental and daily needs. In contrast, X requires 24/7 active supervision, epilepsy management, complex medical and bowel care, specialised behaviour support, and supported communication. This is not typical parenting; it is the equivalent of delivering full-time disability and healthcare within the home.
Our daily life reflects this intensity. Nights are frequently interrupted, with hours of active supervision, and each day requires full physical assistance for all aspects of X’s care while we manage our other children and maintain full-time employment. She cannot safely participate in any environment without direct supervision, meaning every activity requires planning, coordination, and often more than one adult. There is no downtime. Our capacity to sustain this level of care is entirely dependent on the supports provided through the NDIS.
The proposed legislative changes raise serious concerns. Provisions allowing the Minister to make unilateral decisions regarding funding, including applying caps or reductions across categories or groups of participants, represent a shift away from individualised, needs-based funding. This creates a real risk that decisions affecting X’s safety and wellbeing will be made at a system level, rather than based on her individual needs and clinical evidence.
This is particularly concerning given that Angelman Syndrome is a spectrum condition. There is significant variability in complexity, behaviour, mobility, and supervision needs, and there is no “average” presentation that can safely determine funding. Standardised caps or cohort-based
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models risk underfunding those with the highest needs, including children like R who require intensive, constant support.
A shift toward funding based on scheme sustainability rather than actual need also presents immediate risk. If supports are reduced or capped, X will experience regression in communication, mobility, and daily living skills. Reduced support hours will increase risks of injury, unmanaged seizures, choking incidents, and behavioural escalation. It will also significantly limit her ability to access the community safely, leading to increased social isolation, reduced opportunities for interaction and skill development, and diminished quality of life. Without adequate behaviour support, there is an increased likelihood of distress, unsafe behaviours, and reliance on reactive rather than evidence-based approaches.
These risks do not disappear if funding is reduced, they are amplified, increasing the pressure on families already managing complex care. Without adequate supports, the burden becomes unsustainable, impacting our ability to remain employed, support our other children, and maintain our health where we have already noted deterioration with back injuries and hypertension requiring medication. This also creates a widening financial gap over time. Many primary carers are women who reduce work hours or exit the workforce due to caring demands, resulting in reduced lifetime earnings, lower superannuation, and an inability to secure a financially viable retirement. For families already carrying the lifelong responsibility of disability care, this compounds both immediate and long-term risk.
Without appropriate supports, this trajectory leads to burnout, crisis, and increased reliance on higher-cost systems such as hospitalisation or out-of-home care. NDIS supports are not a convenience—they are essential to maintaining safety, dignity, and sustainable care in the home. X’s needs will not reduce if supports are capped or cut, what will change is our ability to safely meet them. The current system allows us to provide stable care while contributing to the workforce and community. Any move away from individualised, adequately funded support risks not only X’s wellbeing, but the long-term financial and social sustainability of families like ours.
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Submission 398
Voice 3 I am writing as a terrified and exhausted mother. My nine-year-old son lives with Angelman Syndrome. He is non-verbal, experiences daily refractory seizures, requires PEG tube feeding on a prescribed ketogenic diet, has no safety awareness and needs 24/7 1:1 direct physical care to stay alive.
When I look at the proposed 2026 NDIS Bill, I don’t see “sustainability.” I see rules that will break my family and strip away my son’s safety.
“Parental responsibility” does not equal 24/7 life support. The Bill assumes I should absorb his care as ordinary parenting because he is nine. Managing daily seizures, full hygiene needs, and measuring stomach-tube fluids is not a standard maternal duty. It is highly specialised care that requires support beyond me.
Standard “cohort” caps will leave my family housebound (and many others). He cannot safely step outside our front door without 1:1 trained support. Cutting this funding means zero community access, trapping our entire household, including his siblings, at home and completely isolating us from society.
Wiping unspent funds penalises families for waitlists. The Bill proposes wiping unspent money every 12 months. In 2023, we were approved for a wheelchair car modification, but it took two years to complete due to provider waitlists. High-end equipment and modifications do not happen in 12 months. Unspent funds should not be removed for supply issues beyond our control. Removing self-management is a threat to my son’s life. I choose to self-manage so I can hand-pick and train workers who know my son’s unique seizure triggers and communication cues. If forced onto an agency list with a rotating door of unfamiliar faces, issues will certainly arise. In our house, a missed seizure cue or a botched PEG feed is a direct threat to his life.
If the Bill is passed, the care gap won’t magically disappear, it will fall entirely on me. I will have no choice but to quit my job as a professional nurse to keep my son alive. The government won’t save money; it will just shift the cost directly onto Centrelink services and the state health system when burnt-out parents collapse and life-threatening errors happen.
I beg the Committee to look at the human faces behind these clauses. Please protect the flexible, individualised funding our children genuinely need to survive.
Young Adult
We are the 60+ year old parents of a wonderful 23yr old young man with Angelman Syndrome, a permanent, lifelong disability that affects every area of his functioning. He requires intensive 24/7 support and supervision as he cannot be left alone. He is physically strong, about 180cm tall, and needs familiar people around him to support him in managing new experiences and who understand his complex communication, physical and sensory needs. He uses a walker to get out and about in the community but requires hands-on assistance from a support worker to help him steer it and keep him and others safe.
He attends a day service for 6.5 hours a day, 5 days a week where he is supported 1:1 by trusted support workers. He does not just hang out at day service, he spends his days developing new skills, experiencing different activities both at the centre and in the community, and doing exercise. He is currently exploring real options for employment, something we never thought
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possible, as government funded disability job programs would not consider him employable. Day service provides him with a structured routine and meaningful activities that benefit his wellbeing. Day service is a group setting but most of the activities he does there would not be possible or accessible without 1:1 support due to his significant support needs.
His day service is funded through his NDIS-SCCP funding. The proposed 50% cut to SCCP funding would significantly impact his well being and functional capacity. It would affect our lives too. It would not be safe for him to attend without 1:1 support meaning he would have to cut his day service hours in half and stay home. We would then have to adapt our lives to cover those hours. We wonder how on earth this would work if he was already living out of home and we were not there to care for him..
Our son also has SDA and SIL funding in his plan. We have been exploring SDA options and a transition plan for him over the past few years based on the funding level he received. We know that this is going to be a challenging time for both him and us, but we know it is important to undertake it when we still can so he will be set up for when we are no longer here.
A few months ago we were given the opportunity of having an SDA home purpose built for him. The opportunity required us to make some major commitments, which a year or two ago we would not have hesitated to take on. However, while this opportunity was ideal in so many ways we could not commit as the NDIS landscape has been so volatile and unstable. We no longer trusted that planning for our son’s future based on the funding the NDIS had assessed and approved him for, would not be cut in the future. If we transitioned him and his funding got cut he would likely have to move into a group home setting and/or his life would be at risk. The plans and dreams that we had for him to be safely supported out of home, which we thought were shared by the NDIS, were now too uncertain to risk. It was a very emotional time for us and we now feel we have to wait and see, while we get older and older, before we even think of moving him out. The uncertainty has been crippling.
Adult (Out of home)
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Submission 398
Our daughter moved into a SIL residence four years ago. Initially the funding she received was inadequate for her needs and after going to the AAT (as it was at the time), she received appropriate levels of funding. This was a combination of 1:1 and 1:3 funding with an inactive overnight support. In January 2025 this funding was slashed by 25% in a new plan.
The SIL provider then reduced supports for all participants in the house to make up the shortfall in funds, without telling families, who only found out when a major mealtime incident occurred. The staffing ratio for dinnertime was reduced to 1:3 in a situation where the three participants all have mealtime management plans and are choking risks. One participant is blind and requires feeding by staff. SIL staff often stayed over this mealtime without pay as they understood the severity of the situation.
While we fought the NDIS over more than 12 months to restore that funding, we often brought our daughter home for weekends and took her on holidays with us. This was because the SIL provider could not provide the support levels required to safely care for three participants. Eventually some roster changes improved the mealtime situation but made morning care more difficult. After more than 12 months, an updated Functional Capacity Assessment and a change of circumstances review, her funding was restored to previous levels with an increase in 1:1 support hours as well. As we are in our 70s and have no family living nearby, we worry about what could happen to our daughter if SIL funding is cut in the future and we are no longer able or alive to take on some of her care.
At the same time, in January 2025, her SCCP support ratio was cut from 1:1 to 1:2. The providers she uses and others we approached only offered 1:1 or 1:3. One provider trialled a 1:3 placement but was unable to take her permanently due to safety concerns for our daughter and the other participants. We were forced to take our daughter on holidays with us and bring her home on public holidays so that the available funds would last for the funding period. Once again, the 1:1 levels were restored after the Change of Circumstances review.
If this funding is cut in the future the outcome would seriously reduce our daughter’s ability to actively participate in the community, forcing her into a centre where there are no activities suitable for her. Reduced mobility would also lead to health problems as she ages. This is not a desirable outcome for her.
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