Attachment 1
Chronology of ’s Medical History, Disability
Needs and NDIS Journey
Participant: Date of Birth: NDIS Participant Number: Prepared by:
Purpose
This chronology provides a summary of ’s medical history, disability progression and NDIS journey.
It demonstrates that ’s current supports have evolved over many years in response to increasingly complex medical, neurological and functional needs. The significant increase in ’s NDIS funding has not occurred because his needs changed overnight. It has occurred because years of medical evidence, specialist assessments, functional decline and repeated advocacy progressively established the level of support required to keep him safe.
Early Childhood and Diagnosis
was born on .
During infancy and early childhood, developmental concerns became apparent. Over time, was diagnosed with:
- Autism Spectrum Disorder Level 3, Pathological Demand Avoidance profile
- Epilepsy
- ADHD
- Intellectual Disability
- Language Disorder At two years of age, experienced his first prolonged seizure requiring emergency ambulance attendance and hospital treatment. He was later diagnosed with Panayiotopoulos Syndrome, a rare childhood epilepsy involving prolonged seizures, vomiting, altered consciousness and significant neurological risk.
’s disability impacts every part of his daily life, including communication, emotional regulation, safety awareness, sleep, personal care, learning, behaviour and participation in school and community settings.
2018 — Entry into the NDIS
Plan approved: 24 August 2018 Funding approved: $16,887.44
After initial requests for entry into the scheme were rejected, entered the NDIS with funding primarily directed toward early intervention, allied health and assistive technology.
At this stage, ’s needs were already significant, but most daily care remained the responsibility of his family.
2019 — Early Intervention Continued
Plan approved: 26 July 2019 Funding approved: $14,667.28
continued to require increasing support due to developmental delay, epilepsy and difficulty with communication and regulation.
Despite growing complexity, supports remained modest and largely therapy-based.
2020 — Increasing Medical and Functional Complexity
Plan approved: 2 July 2020 Funding approved: $22,039.00
commenced school but required substantial support to participate safely.
He remained under the care of multiple professionals, including paediatrics, occupational therapy, psychology, neurology and the Epilepsy Foundation.
His epilepsy and disability-related needs continued to impact every aspect of family life.
2020–2021 — Neurological Deterioration
During the COVID-19 pandemic, ’s EEG was cancelled after being classified as non-urgent.
When eventually completed after being admitted through emergency approximately six months after it had initially been scheduled, specialists identified that had spent months in an almost continual seizure state during sleep. He was diagnosed with Continuous Spikes and Waves during Sleep, a rare and severe epileptic encephalopathy.
This resulted in:
- Emergency admission to Monash Children’s Hospital
- Intensive steroid treatment
- Neurological deterioration
- Regression across multiple developmental areas
- Escalating behavioural complexity
- Reduced functional capacity
- Increased need for constant supervision This period fundamentally changed ’s disability trajectory.
2021 — Increasing Support Needs
Plan approved: 22 June 2021 Funding approved: $26,929.14
Following ’s neurological decline, his school attendance reduced significantly.
He could only manage short periods at school and required his mother’s support to attend. required increasing supervision due to seizures, behavioural dysregulation, reduced functional capacity and safety risks.
Despite this, most of his care continued to be provided informally by his mother.
February 2022 — First Section 48 Review
Plan approved: 7 February 2022 Funding approved: $38,884.20
New information was provided to the NDIA regarding ’s escalating disability-related support needs due to the escape from family violence.
The plan began to recognise increased in-home support requirements, although the level of funding still did not reflect the full extent of ’s daily care needs.
July 2022 — Further Section 48 Review
Plan approved: 13 July 2022 Funding approved: $90,125.08
A further unscheduled review was completed following additional evidence regarding ’s support needs.
By this stage, required support from a broader treating team, including:
- Neurologist
- Paediatrician
- Geneticist
- Occupational Therapist
- Speech Pathologist
- Psychologist
- Behaviour Support Practitioner
- Epilepsy Foundation ’s school attendance remained limited and his dependence on adult supervision continued to increase.
July 2023 — Significant Increase in Recognised Support Needs
Plan approved: 11 July 2023 Funding approved: $154,919.07
This plan reflected further recognition of ’s increasing support needs, including behaviour support, support coordination and more intensive daily living assistance.
By this stage, required:
- One-to-one supervision
- Assistance with daily living
- Behaviour support
- Therapy intervention
- Support coordination
- Assistance to sustain informal supports
- Support to maintain limited school engagement November 2023 — Transition to Complex Support Needs
Plan approved: 16 November 2023 Funding approved: $638,851.13
This represented a significant escalation and formal recognition of ’s complex support needs.
The plan recognised that required intensive support beyond what could reasonably be provided by one unpaid parent. It included substantial Core Supports, Capacity Building, behaviour intervention, allied health and specialist support coordination.
By this stage, required:
- Extensive daily support
- One-to-one supervision
- Support with personal care
- Overnight support
- Behaviour support
- Multidisciplinary therapy
- Specialist support coordination
- Support to sustain informal care arrangements
September 2024 — Complex Support Needs Branch
Plan approved: 5 September 2024 Funding approved: $646,405.92
This plan was approved through the NDIA Complex Support Needs Branch.
The plan included funding for:
- Assistance with Daily Life
- 1:1 in-home supports
- Overnight supports
- Assistance with Social, Economic and Community Participation
- Behaviour Support
- Improved Daily Living
- Support Coordination and Specialist Support Coordination
- Occupational Therapy
- Speech Pathology
- Psychology
- Community Nursing
- Multidisciplinary care planning
- Carer training
- Short Term Accommodation
- Consumables
- Transport This plan recognised that required 24-hour support and a coordinated team-based approach to meet his disability-related needs safely.
August 2025 — Current Plan
Plan approved: 21 August 2025 Funding approved: $650,744.65
’s current plan continues to recognise the level of support required to safely meet his permanent and complex disability-related needs.
is now supported by a multidisciplinary team of approximately ten support workers, together with allied health professionals, medical specialists and support coordination services.
NDIS Funding Progression
Plan Approval Date Funding Approved
24 August 2018 $16,887.44
26 July 2019 $14,667.28
2 July 2020 $22,039.00
22 June 2021 $26,929.14
7 February 2022 $38,884.20
13 July 2022 $90,125.08
11 July 2023 $154,919.07
16 November 2023 $638,851.13
5 September 2024 $646,405.92
21 August 2025 $650,744.65
What This Progression Demonstrates
The funding progression tells an important story.
It shows that ’s support needs were not recognised at their full extent when he first entered the NDIS. Each increase followed additional medical evidence, specialist reports, functional deterioration, school participation difficulties and repeated reviews.
The increase in funding does not represent an increase in expectation or entitlement.
It represents the progressive recognition of a child whose disabilities became increasingly complex, whose medical condition deteriorated significantly and whose support requirements could no longer be safely met by informal care alone.
For the first eight years of ’s life, the majority of this care was provided by his mother.
During this period, she coordinated emergency hospital admissions, specialist appointments, therapy programs, medication management, school supports, behavioural interventions, NDIS reviews, service providers and the day-to-day care required to keep (and his sister) safe.
Today, the NDIA recognises that requires approximately $650,000 per year in funded supports, delivered by a multidisciplinary team of approximately ten support workers, together with allied health professionals and specialist services.
Despite this recognition, ’s family continues to be required to repeatedly justify permanent, lifelong disabilities at each planning conversation and reassessment.
’s journey has never been about seeking additional funding.
It has been about ensuring the level of support available accurately reflects the reality of living with profound disability, so that can live safely, with dignity, within his family and community.