Submission to the Parliamentary Joint Committee on

the National Disability Insurance Scheme

Inquiry into the Operation of the National Disability Insurance Scheme (NDIS)

Submission by Dr Anna Braun, mother of “Izzy” 5 year old disabled child.

Summary

I am submitting this document to assist the Parliamentary Joint Committee in understanding how prolonged delays in accessing reasonable and necessary disability supports can have devastating consequences for young children with significant disabilities and their families.

This submission concerns my five-year-old daughter, Izzy, who has Autism Spectrum Disorder Level 2, Attention Deficit Hyperactivity Disorder (ADHD), Borderline Intellectual Functioning and severe functional impairment across all areas of daily living.

Over the past three years, our family has consistently engaged with the NDIS in good faith. We have obtained repeated assessments from Occupational Therapists, Speech Pathologists, Behaviour Support Practitioners, Developmental Paediatricians, Child Psychiatrists, Psychologists and our General Practitiners. These clinicians have consistently recommended intensive Core Supports,BehaviourSupport, therapy implementation, respite and Support Coordination.

Despite overwhelming multidisciplinary evidence, these recommendations have repeatedly been delayed,reduced or declined. As a consequence, Isabel’s disability-related needs have escalated significantly during the most critical developmental years of her life.

This submission is not simply about one family’s experience. It raises broader questions about whether the NDIS Early Childhood Approach is achieving its intended purpose of providing timely intervention that maximises children’s functional capacity and prevents avoidable deterioration.

Isabel’s Disability

Isabel is a five-year-old child with permanent neurodevelopmental disabilities resulting in profoundfunctional impairment.

She experiences:

• Autism Spectrum Disorder Level 2
• Attention Deficit Hyperactivity Disorder
• Borderline Intellectual Functioning
• Severe emotional and behavioural dysregulation

• Significant sensory processing differences
• Reduced safety awareness
• Impaired communication during distress
• Significant impairment in activities of daily living
• Dependence on continuous adult supervision
• Frequent aggression towards caregivers and peers
• High risk of injury to herself and others in community (suicidality, ongoing aggression towards peers, daycare requiring 1:1 supports to minimise harm to others).

Her disability affects every aspect of daily life.

Escalation Despite Repeated Requests for Early Intervention

For more than three years our family has followed every process requested by the NDIS.

We have supplied:

• Functional Capacity Assessments
• Behaviour Support Assessments
• Occupational Therapy reports
• Speech Pathology reports
• Psychiatric assessments
• Developmental Paediatrician reports
• Psychology reports
• General Practitioner reports
• Carer statements
• Risk assessments

Each report consistently recommended substantial increases in Core Supports to enable Isabel to live safely within the community. Despite this, the recommended supports were not provided.

Escalating Disability

Without adequate disability supports, Isabel’s presentation has deteriorated significantly.

She has since required:

• admission to a specialist inpatient child psychiatric unit for comprehensive multidisciplinary assessment for one month at
• ongoing involvement of Developmental Paediatricians, Child Psychiatrists,Behaviour Support Practitioners and community mental health services;

Intensive Support Needs

• intensive Positive Behaviour Support intervention;
• commencement and subsequent escalation of psychotropic medication including two antipsychotic medications, an antidepressant, ADHD medication and additional medications to manage severe sleep disturbance associated with her disability (in total five medications daily for a under 6 year old - this is significant).
• repeated behavioural crises requiring urgent intervention attended by police or ambulances.
• multiple Victoria Police attendances after I was forced to call emergency services due to extreme physical aggression towards me and immediate concerns for the safety of both Isabel and myself; and
• increasing reliance on acute mental health services because community disability supports were insufficient to safely manage her escalating disability.

These outcomes are the opposite of what Australia’s Early Childhood Approach is intended to prevent. Importantly, they occurred despite repeated recommendations from Isabel’s treating multidisciplinary team for substantially increased Core Supports, disability support workers, respite, therapy implementation and Support Coordination. These recommendations were consistently made in response to Isabel’s escalating functional impairment and increasing safety risks but were repeatedly declined or significantly underfunded by the NDIA.

Rather than receiving the intensity of early intervention recommended by her treating clinicians, Isabel’s disability-related needs continued to escalate. During this period, her behaviours became increasingly severe, resulting in greater reliance on psychiatric services, inpatient admission, escalating psychotropic medication, police attendance during behavioural crises, caregiver injury and increasing risk to both Isabel and those caring for her.

This case demonstrates the significant consequences of delayed implementation of recommended disability supports during the critical early childhood years. Despite extensive clinical evidence that increased Core Supports were required to safely manage Isabel’s disability and maximise her functional capacity, those supports were not provided in a timely manner, while her functional presentation continued to deteriorate.

Community Services Also Identified Inadequate Supports

Community Services Also Identified Inadequate Supports

As Isabel’s disability-related needs escalated, our family repeatedly sought assistance outside the NDIS in an effort to maintain her safely at home and reduce the risk of further crises.

Brotherhood of St Laurence (Early Childhood Partner)

Throughout Isabel’s NDIS journey, we repeatedly contacted Brotherhood of St Laurence (BOSL) during periods of escalating behavioural crises, seeking guidance, urgent assistance and escalation of her support needs. Despite numerous emails, telephone calls and requests for assistance, we often

experienced delayed responses, missed correspondence and a lack of timely recognition of the severity

of Isabel’s escalating disability-related needs.

In addition, BOSL incorrectly recorded aspects of Isabel’s diagnosis during our engagement. Following our concerns, BOSL acknowledged this error, accepted responsibility, and advised that internal changes had been implemented to reduce the likelihood of similar documentation failures affecting other children in the future.

Despite BOSL recognising the increasing complexity of Isabel’s presentation and repeatedly advising us to seek additional community supports, the level of funded disability supports available through the NDIS remained substantially below the recommendations of Isabel’s treating clinicians.

Carer Gateway

At BOSL’s recommendation, we sought assistance through Carer Gateway in the hope of accessing respite and additional support.

After reviewing Isabel’s presentation, Carer Gateway advised that they were unable to safely provide respite or in-home services because of the severity of Isabel’s behavioural presentation and the associated occupational safety risks to their staff. We were informed that Isabel’s support needs exceeded the services they were able to safely deliver and that the disability supports required should instead be funded through the NDIS.

As a result, one of the alternative support pathways recommended to us was ultimately unavailable because Isabel’s disability-related needs were considered too complex and high risk.

Disability Gateway

We also contacted Disability Gateway following recommendations from BOSL. Disability Gateway advised that the supports we required—including disability support workers, respite and intensive in-home assistance—were appropriately matters for NDIS funding and were not services they could directly provide.

Child and Adolescent Mental Health Services (CYMHS)

Isabel was referred to Child and Adolescent Mental Health Services (CYMHS) for ongoing psychological support due to the severity of her behavioural presentation.

Throughout our involvement, I attempted to provide videos documenting Isabel’s behaviour within the home to assist clinicians in understanding the severity, frequency and duration of her behavioural crises. However, I was advised that staff were unable to view these recordings due to organisational policies intended to minimise staff exposure to potentially distressing material.

While I appreciate the intent of these policies, the inability to review the recorded behaviours limited clinicians’ opportunity to directly observe the severity of Isabel’s presentation outside the clinical setting. This created additional challenges in conveying the extent of the risks our family was managing on a daily basis.

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The Orange Door

I also made multiple self-referrals to The Orange Door seeking assistance as Isabel’s behaviours continued to escalate.

Despite these earlier referrals, significant involvement did not occur until after Victoria Police attended our home during severe behavioural incidents in August 2026. Following police involvement, The Orange Door accepted our family for integrated service coordination. However, we were advised that engagement was unlikely to commence for approximately one month, with services anticipated to begin around October 2026.

During discussions with The Orange Door in early August 2026, professionals expressed concern that Isabel appeared to be significantly underfunded for the level of disability-related support she required and that her current funded supports were not consistent with the complexity of her presentation.

A Pattern of Escalating Need Without Corresponding Supports

Across multiple services—including Brotherhood of St Laurence, Carer Gateway, Disability Gateway, CYMHS and The Orange Door—our family repeatedly sought assistance in an effort to maintain Isabel safely at home and prevent further crises.

Despite escalating behavioural risks, repeated requests for increased Core Supports, and consistent multidisciplinary recommendations for disability support workers, respite, Behaviour Support and Support Coordination, no meaningful increase in Isabel’s Core Supports occurred.

Instead, our family continued to rely on emergency responses, acute mental health services and crisis management while waiting for administrative review processes to progress. For a child in the critical early intervention period, these delays resulted in lost opportunities to implement evidence-based supports during the developmental window in which they are known to have the greatest long-term benefit.

When Every Door Has Been Knocked On

One of the most difficult questions our family has faced throughout this journey is: where are families supposed to turn when every available service acknowledges the severity of the situation, yet no service is able to provide the disability supports that are actually required?

Over the past three years, we have sought assistance from the NDIA, Brotherhood of St Laurence, Carer Gateway, Disability Gateway, CYMHS, The Orange Door, our General Practitioner, Developmental Paediatricians, Child Psychiatrists, Occupational Therapists, Speech Pathologists,Behaviour Support Practitioners, emergency departments, inpatient psychiatric services, ambulance services and Victoria Police.

At every stage, our family has attempted to raise concerns early rather than waiting for a crisis to occur. We have consistently followed professional advice, attended appointments, commissioned assessments, submitted updated reports and sought support whenever Isabel’s needs escalated.

Many of these professionals recognised the increasing complexity of Isabel’s presentation. Some acknowledged that her funded supports were inadequate for her level of disability. Others advised that the supports required fell within the responsibility of the NDIS rather than their own service.

consistent concerns, the level of funded disability supports remained substantially below that

recommended by Isabel’s treating multidisclinary team. This experience raises a broader systemic question.

What options remain for families when they have sought help from every available service, from police, hospitals, private paying psychiatrists and therapists; all those services recognise the risks, yet the recommended disability supports are still not implemented?

By the time emergency services, inpatient psychiatric units and police become involved, the opportunity for early intervention has already been lost. The system should not require families to reach repeated crises before appropriate disability supports are available.

Early intervention is intended to prevent deterioration, reduce family breakdown and minimise reliance on emergency responses. Our experience suggests that when recommended supports are significantly delayed, families may continue to move between crisis services, each recognising the seriousness of the situation but without the capacity to provide the disability supports that are ultimately required. This inquiry presents an important opportunity to examine whether current pathways allow children and families to receive timely intervention before circumstances deteriorate to the point where emergency services become the primary response.

Parliamentary and public discussions following several high-profile family tragedies in Australia have highlighted the importance of identifying caregiver burnout, cumulative stress and safeguarding risks before they escalate. While the circumstances of each family are different, these events reinforce the need for systems that respond proactively to documented risk rather than primarily after crisis has occurred.

Internal Reviews Did Not Resolve the Problem

Over the course of Isabel’s NDIS journey, her treating clinicians repeatedly submitted updated multidisclinary evidence requesting increased disability supports, including additional Core Supports, Behaviour Support, Support Coordination, respite, and therapy implementation.

Despite this extensive clinical evidence:

• Core Supports remained substantially below the recommendations of Isabel’s treating multidisciplinary team.
• Consistent recommendations from Occupational Therapists, Behaviour Support Practitioners, Speech Pathologists, Developmental Paediatricians, Psychiatrists and other treating clinicians were not reflected in funding decisions.
• Isabel’s escalating functional impairment, increasing behavioural complexity and significant safety risks did not result in timely increases to her disability supports.

Our family has now undertaken two separate Internal Reviews under section 100 of the National Disability Insurance Scheme Act. The most recent Internal Review, dated 14 July 2026, again did not result in the level of funding recommended by Isabel’s treating clinicians despite substantial additional

• evidence demonstrating a significant deterioration in her functional capacity and disability-related support needs.

Despite years of advocacy, repeated specialist reports, multiple Functional Capacity Assessments, Behaviour Support recommendations, psychiatric involvement, inpatient admission, police attendance during behavioural crises, and escalating risks to Isabel and our family, the disability supports recommended by her treating team have still not been implemented.

As a result, our family has been forced to commence proceedings before the Administrative Review Tribunal (ART). At the time of writing, we continue to wait for our Tribunal hearing, currently anticipated in October 2026. This will represent many months during which Isabel has remained significantly under-supported while administrative review processes continue.

For a child under six years of age, these delays are particularly concerning. Early childhood represents the most critical period of neurodevelopment and neuroplasticity. Every month spent waiting for reviews, appeals and Tribunal proceedings is another month in which clinically recommended early intervention cannot be implemented. By the time our Tribunal is heard, Isabel will have spent years with disability supports that her treating clinicians have consistently considered inadequate.

Our experience demonstrates that, despite two unsuccessful Internal Reviews and extensive multidisciplinary evidence, families can remain trapped in prolonged administrative processes while children continue to lose irreplaceable opportunities for early intervention. This raises important questions about whether the current review system is sufficiently responsive to the needs of young children with rapidly escalating disabilities during the developmental period in which timely intervention is known to have the greatest lifelong benefit.

The Human Cost

The impact of these prolonged delays has extended far beyond Isabel’s disability and has profoundly affected every aspect of our family’s life.

I am a medical practitioner who left my career to become Isabel’s full-time carer because Isabel’s disability-related needs became impossible to balance with employment. Rather than participating in the workforce, I now spend my days responding to behavioural crises, implementing therapeutic strategies, coordinating an extensive multidisciplinary team, attending medical appointments and advocating for the disability supports repeatedly recommended by her treating clinicians.

Despite these efforts, Isabel’s behaviours have continued to escalate while we have waited for the supports consistently recommended by her multidisciplinary team.

During a recent severe behavioural incident, I sustained a significant concussion while attempting to protect both Isabel and myself from harm. This injury occurred in the context of my pre-existing acquired brain injury and has substantially reduced my physical and cognitive capacity to safely manage Isabel’s increasingly complex and violent behaviours. I continue to experience neurological symptoms affecting my concentration, reaction time, balance and endurance, yet I remain Isabel’s primary and, for most of the time, sole caregiver.

The combination of my neurological injuries and Isabel’s escalating aggression has significantly increased the risk of serious injury to both of us. Instead of receiving the intensive disability supports recommended by her treating team, I have increasingly found myself managing behavioural crises that would ordinarily require multiple trained disability support workers.

The financial burden has also become unsustainable. In the absence of adequate NDS-funded supports, our family has personally funded many of Isabel’s recommended therapies, assessments and interventions. We have routinely spent more than $1,000 per week out of pocket in an attempt to provide the therapies and supports recommended by her treating clinicians. These costs have exhausted our savings, required us to access my superannuation to continue funding essential care, and placed us under significant financial strain while I attempt to maintain a household on a single income after leaving my medical career.

The emotional and psychological impact has been equally profound. For more than two years, caregiver burnout has been consistently identified and documented by multiple treating professionals, including Behaviour Support Practitioners, Occupational Therapists, Psychiatrists, inpatient treating teams and Functional Capacity Assessments. During Isabel’s inpatient admission to the the impact of her behaviours on my ability to safely continue caring for her was repeatedly recognised and documented. Multiple psychiatric reports andBehaviour Support assessments have described severe caregiver burden, escalating safety concerns and the urgent need for increased formal disability supports to maintain Isabel safely within the family home.

Throughout this period, I repeatedly informed the NDIA, Brotherhood of St Laurence and Isabel’s treating providers that I was reaching the point where I could no longer safely manage Isabel’s disability-related needs without additional support. Despite these repeated warnings and extensive multidisciplinary evidence documenting severe caregiver burnout, increasing risk and declining caregiver capacity, no meaningful increase in Isabel’s Core Supports was provided.

The result has been entirely predictable. Rather than preventing family breakdown, reducing crisis presentations and supporting sustainable caregiving—as intended under the NDIS—I have experienced progressive physical injury, significant psychological distress, financial hardship and ongoing exposure to violence while continuing to provide care without the level of support repeatedly recommended by Isabel’s treating clinicians.

Throughout this process, I have also become increasingly concerned about the perceived role of informal supports within funding decisions. During discussions with a representative from Brotherhood of St Laurence, I was advised that providing a carer statement from my partner may reduce the likelihood of Isabel receiving additional supports because it could suggest that I had greater informal assistance available.

This advice was deeply concerning. My partner lives approximately three hours away, works full-time and is unable to provide regular day-to-day care for Isabel. He is not part of our routine caregiving arrangements and cannot safely meet Isabel’s intensive disability-related needs. Nevertheless, I was advised that documenting his perspective as someone who has witnessed Isabel’s presentation could be interpreted as evidence of additional informal supports.

This advice appeared inconsistent with my understanding of the NDS Act and Operational Guidelines, which state that funding decisions should be based on a participant’s disability-related functional impairment and the reasonable and necessary supports required to address those impairments. Families

Lack of Informal Supports

Our family has no meaningful informal support network available to assist with Isabel’s disability-related care.

Both my family and Isabel’s father’s family live overseas in two separate countries, approximately 10,000 miles away. Consequently, there are no grandparents, siblings or extended family members available to provide respite, assist during behavioural crises or support Isabel’s daily disability-related needs.

For extended periods, Isabel’s father is required to work away from home due to employment commitments. During these periods, I am solely responsible for providing all disability-related care, responding to behavioural crises, implementing therapy and Behaviour Support recommendations, attending appointments and coordinating Isabel’s multidisciplinary care.

As Isabel’s behaviours have escalated, our informal support network has progressively diminished. Friends are no longer able to safely assist due to the severity of Isabel’s aggression and the associated risk of injury. During a recent behavioural incident, a close friend attempted to assist and sustained bruising and other physical injuries following an assault by Isabel.

These circumstances have been communicated to the NDIA through multiple carer statements, Functional Capacity Assessments, Behaviour Support reports and correspondence submitted over several years. The evidence consistently demonstrates that Isabel’s family has minimal informal support available and that the existing caring arrangements are not sustainable without formal disability supports.

Despite this evidence, no meaningful increase in Core Supports was provided to address the absence of informal supports, the documented caregiver burnout, or the increasing risks to Isabel and her family.

As a result, I continue to provide complex, high-intensity disability care in relative isolation while recovering from my own neurological injury. The current level of funded supports remains substantially below that recommended by Isabel’s treating multidisciplinary team, despite repeated evidence that the existing caring arrangement is becoming increasingly difficult to sustain safely.

While this submission describes Isabel’s individual experience, the concerns it raises extend well beyond our family.

Our engagement with the NDIS began more than three years ago after educators at Isabel’s childcare centre first identified significant developmental concerns when she was approximately 18 months of age. We were advised that early referral to the NDIS was essential because the first years of life represent the most critical period for developmental intervention. Since that time, despite following every recommended process, our family has experienced a number of systemic issues that appear inconsistent with the objectives of the National Disability Insurance Scheme Act 2013 and Australia’s Early Childhood Approach.

Our experience highlights the following concerns:

Delays in Early Intervention

Despite overwhelming evidence supporting the importance of early intervention during the first six years of life, Isabel has experienced prolonged delays in accessing the level of disability supports consistently recommended by her treating multidisciplinary team. These delays have occurred during the period in which intervention is recognised as having the greatest potential to improve long-term functional outcomes.

Repeated Requests for Evidence Without Clear Pathways

Over the past three years, the NDIA has repeatedly requested further clinical reports, Functional Capacity Assessments, Behaviour Support reports and updated multidisciplinary evidence to demonstrate Isabel’s disability-related functional impairment.

Each time additional evidence was requested, our family obtained and submitted it. The evidence consistently demonstrated permanent disability, substantial functional impairment and escalating support needs. Despite this, funding decisions continued to conclude that the evidence was insufficient to justify the requested supports.

When seeking clarification regarding what additional evidence would satisfy the Agency’s requirements, we were advised that the NDIA could not specify what further information would be required. As a result, our family entered a cycle of repeatedly obtaining increasingly detailed specialist reports without any clear understanding of the evidentiary threshold required to demonstrate Isabel’s disability-related support needs.

Funding Decisions Not Reflecting Contemporary Clinical Evidence

Across multiple funding decisions and Internal Reviews, recommendations made by Isabel’s treating Occupational Therapists, Speech Pathologists, Behaviour Support Practitioners, Developmental Paediatricians, Child Psychiatrists, General Practitioners and other members of her multidisciplinary team were not reflected in the funded level of supports.

On more than one occasion, updated clinical reports documenting significant deterioration in Isabel’s presentation were offered before decisions were finalised but were not incorporated into the review process. Consequently, funding decisions were made without consideration of the most current clinical evidence available regarding Isabel’s functional capacity and escalating disability-related needs.

Delays in Internal Reviews and Tribunal Proceedings

Following two unsuccessful Internal Reviews under section 100 of the NDIS Act, our family has been required to commence proceedings before the Administrative Review Tribunal.

At the time of writing, we have already waited approximately five months following the most recent Internal Review decision while Isabel continues to receive supports that remain substantially below those recommended by her treating clinicians.

For a child in the most important years of neurodevelopment, these delays represent lost opportunities that cannot simply be recovered once review processes are complete.

Caregiver Capacity and Safeguarding

Throughout Isabel’s NDIS journey, Behaviour Support Practitioners, Occupational Therapists, treating psychiatrists, inpatient treating teams and Functional Capacity Assessments have repeatedly documented severe caregiver burnout, declining caregiver capacity, increasing safeguarding risks and the urgent need for additional disability supports.

These concerns have included repeated physical assaults, documented caregiver injury, significant psychological distress, financial hardship and increasing inability to safely sustain Isabel’s current caring arrangements without formal supports.

Despite this extensive multidisciplinary documentation, no corresponding increase in Core Supports occurred to address the identified risks or assist in maintaining Isabel safely within her family home.

Escalating Clinical Complexity Without Corresponding Support

Despite significant deterioration in Isabel’s presentation—including psychiatric admission, increasing psychotropic medication, repeated behavioural crises, emergency service involvement, police attendance, documented risk of harm, increasing aggression and worsening functional impairment—there was no substantial increase in the Core Supports repeatedly recommended by her treating multidisciplinary team.

As Isabel’s disability became more complex, the intensity of funded supports remained largely unchanged.

Administrative Burden on Families

The current administrative process places a substantial burden on families already providing intensive disability care.

Over the past three years, I have spent countless hours coordinating reports, arranging assessments, communicating with the NDIA, Brotherhood of St Laurence, treating specialists, therapists and legal representatives, while simultaneously providing full-time care for Isabel.

I previously worked full-time as a medical practitioner. Today, I spend the majority of my time acting as Isabel’s advocate, administrator, care coordinator and primary caregiver. Much of this work has involved repeatedly obtaining evidence that has consistently reached the same conclusions regarding Isabel’s disability-related needs.

This administrative burden has itself become a significant barrier to providing care and maintaining my own health and wellbeing.

Every month spent navigating prolonged administrative processes is another month in which a young child loses irreplaceable opportunities for intervention during the period of greatest neuroplasticity. For children under six years of age, these delays are not simply administrative—they represent lost developmental opportunities that cannot be recovered later in childhood.

This submission respectfully asks whether the current operation of the NDIS Early Childhood Approach is meeting its intended purpose. If families can provide extensive, consistent multidisciplinary evidence over several years—yet still experience prolonged delays, repeated requests for further evidence and inadequate implementation of recommended supports—there is a risk that the Scheme is failing to deliver early intervention when it has the greatest capacity to change a child’s lifelong trajectory.

Recommendations

Based on our family’s experience, I respectfully ask the Parliamentary Joint Committee to consider whether the current operation of the NDIS Early Childhood Approach is achieving its intended purpose for children with complex developmental disabilities. In particular, I ask the Committee to consider the following recommendations:

• Introduce expedited planning, review and appeal pathways for children under seven years of age where there is consistent multidisciplinary evidence of permanent disability, significant functional impairment and escalating support needs, recognising that delays during early childhood result in lost developmental opportunities that cannot be recovered.
• Reduce repeated requests for additional evidence where multiple treating clinicians have reached consistent conclusions regarding a child’s functional capacity and disability-related support needs, unless there is a clearly identified reason why further evidence is required.
• Provide greater transparency regarding evidentiary requirements, ensuring families are informed of the specific information required when existing clinical evidence is considered insufficient, rather than requiring repeated assessments without clear guidance.
• Give greater evidentiary weight to treating multidisciplinary teams, including Functional Capacity Assessments, Behaviour Support Assessments, Occupational Therapy, Speech Pathology, Developmental Paediatricians, Child Psychiatrists and other treating clinicians who have longitudinal knowledge of the child’s disability.
• Require urgent review of Core Supports following significant clinical deterioration, including psychiatric admission, documented behavioural escalation, emergency service involvement, police attendance, significant medication escalation or evidence of increasing functional impairment.
• Improve recognition of caregiver capacity and safeguarding risks when determining reasonable and necessary supports, particularly where there is documented caregiver injury, severe caregiver burnout, inability to safely sustain caring arrangements, or evidence that the current level of support is no longer sufficient to maintain the participant safely within the family home.

Reduce Delays in Internal Reviews

7. Reduce delays in Internal Reviews (section 100) and Administrative Review Tribunal proceedings involving young children with rapidly escalating disability-related needs by introducing priority timeframes that reflect the importance of early intervention.

8. Ensure that the principles of early intervention are reflected in funding decisions, recognising that delaying recommended disability supports often results in greater long-term disability, increased reliance on restrictive practices, psychiatric services, emergency departments, inpatient admissions and significantly higher long-term costs to the Scheme.

9. Review whether the current operation of the Early Childhood Approach is achieving the objects and principles of the National Disability Insurance Scheme Act 2013, particularly in relation to providing timely, evidence-based supports that maximise functional capacity and reduce the impact of disability over the participant’s lifetime.

Positive Outcome Achieved Through Advocacy

While much of this submission outlines areas in which I believe improvements are needed, I also wish to acknowledge one positive outcome that has resulted from my advocacy. Following submission of a comprehensive dossier of approximately 90 pages documenting our correspondence with both the NDIA and Brotherhood of St Laurence, Brotherhood of St Laurence conducted an internal review of our concerns. As part of that process, Brotherhood of St Laurence acknowledged that Isabel’s diagnosis had not been accurately recorded within their systems, resulting in confusion regarding her pathway and whether she should have been receiving support through the NDIS Early Childhood pathway or the Thriving Kids program.

Following this review, I was contacted and advised that Brotherhood of St Laurence had accepted responsibility for this administrative error. Importantly, I was informed that Brotherhood of St Laurence had implemented changes to its internal processes to ensure that children’s diagnoses are more accurately documented and that other families would be less likely to experience the same confusion regarding eligibility, referral pathways and service allocation.

Although this outcome does not alter Isabel’s current funding or support arrangements, it demonstrates that constructive advocacy can identify weaknesses within the system and lead to improvements that may benefit other families. Unfortunately, this has been the only tangible systemic improvement that I have personally observed after more than three years of advocacy.

It is my sincere hope that this Parliamentary Inquiry will provide an opportunity for broader systemic improvements, ensuring that future families do not have to experience years of advocacy before concerns are recognised and meaningful change occurs.

Conclusion

The National Disability Insurance Scheme was established with a clear purpose: to provide timely, evidence-based support that maximises functional capacity, promotes independence and improves lifelong outcomes for Australians living with disability.

Our family’s experience raises important questions about whether those objectives are being consistently achieved for children with complex developmental disabilities.

For more than three years, we have engaged with every process requested of us. We have obtained repeated multidisciplinary assessments, Functional Capacity Assessments, Behaviour Support reports, pyschiatric and paediatric reviews, specialist recommendations, carer statements and independent clical evidence. We have participated in planning meetings, lodged multiple Change of Circumstances requests, pursued two Internal Reviews under section 100 of the NDIS Act, and are now awaiting review before the Administrative Review Tribunal.

Throughout this period, Isabel’s disability-related needs have continued to escalate and she has deteriorated greatly. She has required admission to a specialist inpatient neuropsychiatry unit, increasing psychiatric intervention, escalating psychotropic medication, repeated behavioural crises, police attendance following serious violence towards her primary carer, increasing safeguarding concerns and progressively more intensive multidisciplinary involvement.

These outcomes occurred despite repeated recommendations from her treating clinicians that substantially greater Core Supports, respite,Behaviour Support, therapy implementation and Support Coordination were required to safely meet her disability-related needs. Those recommendations were repeatedly provided to the NDIA, yet the level of funded supports remained significantly below what was recommended by her multidisciplinary treating team.

This submission is not intended to seek special treatment for Izzy. Rather, it asks the Committee to consider whether her experience reflects broader systemic issues affecting children with complex disabilities across Australia.

Early childhood represents a once-in-a-lifetime window for intervention. Every month spent waiting for administrative reviews, repeated requests for evidence and prolonged appeal processes is another month in which a child’s opportunity to maximise their developmental potential is diminished. Unlike many other administrative decisions, these delays cannot simply be remedied retrospectively, as lost developmental opportunities cannot be recovered.

I respectfully ask the Committee to consider Isabel’s experience as evidence that further reforms may be required to ensure the NDIS delivers timely, evidence-based and clinically responsive supports during the period in which they have the greatest capacity to change a child’s developmental trajectory. Doing so would not only improve outcomes for children like Isabel, but would also better fulfil the objectives of the National Disability Insurance Scheme Act 2013 by supporting participants earlier, reducing preventable deterioration, and creating a more effective and sustainable Scheme for future generations.

I wish to offer Isabel’s case as a detailed case study for the Committee’s inquiry. As both Isabel’s primary carer and a medical practitioner, I have experienced the operation of the NDIS from the perspectives of a clinician, advocate and parent. Over more than three years, I have documented

• extensive interactions with the Scheme, including repeated planning meetings, requests for evidence,
• multidisciplinary assessments, Internal Reviews, appeals and crisis presentations.

I would welcome the opportunity to assist the Committee further by providing additional documentation, answering questions, or participating in any hearings or consultations that may inform this inquiry. It is my sincere hope that Isabel’s experience can contribute to identifying opportunities to improve how the NDIS responds to young children with complex developmental disabilities and their families.

My intention in making this submission is not solely to advocate for my own daughter, but to contribute constructively to improving the operation of the NDIS for all Australian children with disability. I believe our experience highlights important issues regarding the timely implementation of evidence-based supports, the use of multidisciplinary clinical evidence in decision-making, and the effectiveness of the current early childhood pathway. I hope that by sharing our experience, the Committee can consider reforms that better align the practical operation of the Scheme with its legislative objectives and the needs of the families it was established to support.

At this point in time, the only achievement I feel I have made in the NDIA advocation process is brotherhood of St Laurence stating that they have changed a policy due to their missing of a diagnosis and receiving a phone call stating we would be moved to thriving kids. They acknowledged they messed up in completing her diagnosis in the NDIA database and there will be no other families left to have a phone call and confusion of where their child stands on NDIA versus thriving kids.

Dr Anna Braun, M.D, B.SC.

Primary Carer of Isabel Former General Practitioner and Medical Practitioner