Submission 356
Formal Submission Disability, Foster Care and Cross-Agency System Failures
Submission from a Long-Term Foster Carer and Guardian
Introduction
I am a long-term foster carer and guardian caring for a sibling group of three children with significant disabilities, trauma histories and complex support needs. I have cared for the children for over ten years. I need to know what the NDIS changes will do for the 3 children I provide care for, With limited support from the NDIS I am unsure if providing care is sustainable for myself. In December 2027, the 16 year old will turn 18, there is no transition to adulthood support from DCJ, he will be on a disability support pension of $855pf, I will not be eligible for a carers payment for him as I receive a Centrelink payment already. So I will provide care for an adult full time for free and already support his sister 18, who has left care and lives with us still. I also have a 14 year old boy on NDIS, he attends school in Sydney for children with a disability, he has another 4 years of schooling, without the NDIS support the likelihood of not being able to maintain the placement is extremely high risk.
In 2015, I became the carer for two brothers aged 3 and 6. Both boys were diagnosed with Autism Spectrum Disorder Level 2 and Level 3, alongside additional medical and developmental conditions. In 2022, their older sister joined our household after a failed restoration process and family breakdown. Their sister, now 18, remained closely connected to our family and continues to live with us while transitioning into adulthood.
I am now 65 years old and continue to provide full-time care, advocacy and supervision for children and young people with profound and lifelong support needs.
This submission is not solely about the National Disability Insurance Scheme (NDIS). It is about the cumulative impact of navigating multiple disconnected government systems including the National Disability Insurance Agency (NDIA), Department of Communities and Justice (DCJ), Centrelink, Medicare, NCAT, the education system, and health services.
My purpose in making this submission is to demonstrate the realities faced by carers supporting children with disability and trauma in out-of-home care, and to advocate for practical reforms that would significantly improve outcomes for children, carers and families.
The Reality of Caring for Children with Disability in Out-of-Home Care
The discussion around foster care often focuses on recruitment, compliance, policies and carer shortages. Far less attention is given to the practical reality of providing daily care to children with severe disability, trauma and behavioural needs over many years.
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Caring for children with disability in out-of-home care is not simply parenting. It involves:
24/7 supervision behavioural management medical advocacy crisis management transport coordination therapy coordination educational advocacy tribunal participation legal processes government reporting requirements sleep disruption physical risk to carers constant administration across multiple systems
The emotional and physical toll on carers is significant.
Despite this, carers are repeatedly required to prove the legitimacy of a child’s disability, trauma history and support needs to separate agencies that do not communicate effectively with one another.
Birth Family Contact and Child Safety
For more than ten years, I facilitated and supervised all birth family contact myself.
This involved travelling up to five hours in a single day, once or twice a month, with two autistic boys who had complex trauma and behavioural needs. I never requested transport assistance because DCJ did not have workers appropriately trained to support children with severe disabilities and trauma-related behaviours.
Over time, I built respectful relationships with the children’s birth and extended family. Eventually, family members themselves recognised that ongoing contact was no longer in the children’s best interests. Neither parent has the ability to provide any care or support to the 3 children I have.
The work involved in maintaining safe family connections for children in care is significant and often unrecognised.
Education System Challenges
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The boys were originally enrolled in a school that was a considerable distance from our home. I was not eligible for assisted school travel because I owned a registered vehicle and did not work. (Assisted school Travel)
One child required 1:1 support at all times due to ASD Level 3, intellectual disability, epilepsy, OCD, ODD, trauma and being nonverbal.
To manage morning routines safely, I used NDIS-funded support workers beginning at 6:30am simply to assist in getting three children with disabilities ready for school.
One of the boys was later enrolled in a specialist disability school at Wahroonga. This was not a lifestyle choice or preference for private education. It was the safest and most appropriate educational setting available.
The school provided:
behavioural specialists occupational therapists psychologists speech therapists highly specialised classrooms
Even within that setting, his trauma and medical complexity resulted in years where he required:
1:1 support breakout room supervision emergency behavioural intervention stakeholder meetings crisis management planning
I or a support worker frequently needed to remain nearby in case he escalated and became unsafe due to distress and dysregulation.
The fees exceeded $20,000 per year across both boys, in addition to travel costs, fuel, uniforms, medications and reduced capacity to work.
When his behaviours later escalated to unsafe levels during transport and school attendance, I made the difficult decision to withdraw him from school. I was then required to prove I could continue his education at home through evidence-based learning reports.
As a carer in my mid-60s, with no teaching background, I became responsible for implementing and documenting HSC Life Skills curriculum requirements while simultaneously managing severe behavioural and disability-related care needs. (Education)
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DCJ and Guardianship Issues
During my guardianship assessment in 2021, I stated clearly that if the NDIS became unsustainable, it would significantly impact my ability to continue caring for the boys long term.
Guardianship arrangements provide carers with fixed financial care plans that cannot realistically adapt to changing costs over time.
Despite years of caring responsibilities:
I did not receive establishment assistance I received minimal support for family contact transport I was unaware I had an allocated caseworker for years The boys have just received their laptop which was in the financial care plan that they were to receive it in Year 7. requests for educational assistance involved extensive evidence requirements specialist educational placements were treated as optional rather than necessary
In 2025, DCJ approved assistance for half the school fees after extensive advocacy and evidence gathering. When I reapplied due to rising costs, I was informed the previous support was a one-off.
At the same time, significant unused allocations remained attached to the child despite those services being clinically inappropriate or inaccessible for him due to his disability.
The system lacks flexibility and practical understanding of individual disability needs.
I am required to produce evidence every 12 months that they still have a disability.
Financial care plan was developed prior to their sister joining us.
NDIS Administrative Burden
Every 12 months I am required to repeat the same process for each child:
collect reports from therapists gather behavioural data obtain educational evidence document incidents provide sleep records attend planning meetings justify supports already proven necessary
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Plans consistently return with significantly reduced funding compared to assessed needs.
This is then followed by:
internal reviews repeated questioning appeals tribunal processes legal involvement additional evidence requests
The process often continues for 12 months or longer.
To secure supports, I have provided:
daily behavioural tracking sleep data incident reports restraint risk evidence medical documentation school evidence support worker reports
This occurs while actively caring for children with severe disability and trauma every day.
The emotional and administrative burden placed on carers is excessive and unsustainable.
The key stakeholders in the NDIS plans to ensure they are working towards their goals are massive:
School
GP’s
Paediatrician
OT
Speech
Behaviour Support Therpist
Psychologists
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Psychiatrists
Co-ordinator of support
Hand Surgeon
Genetics
Neurologist
7 months into a 12 month plan and we have been to Internal Review, first hearing of the ART with the second hearing scheduled for the end of June. That is after submitting 16 documents of evidence, including a Functional Capacity Assessment at a cost to DCJ of around $4000 each. A statement of issues provided which I was given 1 week to provide a detailed timetable of supports for the 14 year old, full detailed timetable of my day, a timetable of what the supports will look like if successful, carers statement and incident reports. I utilise 2 days of STR to complete the request, it cost $5400 each for 2 days, which is the NDIS price guide. Again they take 2 boys for 48 hours which is $112ph. In the early days of NDIS, we did a trip to Queensland, we paid all airfares out of pocket, accommodation and meals. We took 2 support workers, paying the hourly rate they were required, my son and my daughter, (both Disability Support Workers, they were unpaid) The 4 of them provided support during the day and we provided overnight support. My son drove up so they had a car up there.
Medicare and Health System Barriers
When children turn 14, carers can lose access to Medicare information despite having legal guardianship orders.
In practice, this means:
a nonverbal young person cannot independently authorise care carers cannot access records emergency health advice becomes difficult or impossible
Recently, I contacted Health Direct because my nonverbal son was experiencing chest pain and repeatedly stating that his heart hurts.
I was refused triage support because he could not independently authorise me to speak on his behalf.
Despite legal guardianship and years of documented disability, I was treated as though I had no authority to advocate for him medically.
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Attending doctors/paediatrician/dental, the account must be paid by me as there are no bank details recorded for the children and I can’t add them as I don’t have Authority to act on his behalf as he can’t identify himself without prompting. Even though I have worked tirelessly to improve his verbal language. They are also on my Medicare card and they are unable to apply to be removed and have their own cards.
Banking and Financial Management Problems
I was unable to open a bank account in my son’s name because he could not independently verify his identity or authorise me to act for him.
To address this, I obtained a Financial Management Order through NCAT.
However, the practical result was that:
accounts remained heavily restricted he could not independently learn money management skills I required approval for ordinary spending decisions I was criticised for transferring funds to purchase replacement items such as phones after behavioural incidents I am questioned when I purchased tickets to a concert for his brothers birthday gift, yet the account is in my name with my login, so I could just purchase the tickets without question as to who attended. The boys have victim services recognition payment requires me to provide my birth certificate, marriage certificate, at my expense for the boys, then have them certified. Lodge them with NCAT but I can provide an invoice for school fees which can be paid from their recognition payment. If I don’t use it, NCAT will take fees out annually. They can apply to have the fees removed when they turn 18, however they are non-verbal, they don’t have the capacity to apply. They have 22 sessions of Psychology through Victim Services and $10,000 in the Financial Care plan, never accessing psychology as he is non-verbal.
At the same time, agencies continue to set goals around independence, budgeting and life skills while creating systems that prevent practical learning opportunities.
The administrative burden of NCAT management requirements also creates additional costs and paperwork for carers already managing significant responsibilities.
Centrelink and Repeated Disability Verification
When transitioning from child supports to Disability Support Pension, I was required to repeat disability verification processes already completed for:
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NDIS
DCJ
NCAT
education systems Carer Allowance
Despite lifelong disability diagnoses, extensive records and ongoing support needs, evidence requirements were duplicated repeatedly.
Administrative delays resulted in interruptions to payments despite forms already having been submitted.
This duplication across systems places unnecessary stress on carers and families.
I am a Centrelink nominee for the 16 year old and I could go online and change his payment destination.
Impact on Carers
Caring for children with severe disability and trauma has significant physical, emotional and financial impacts.
I regularly experience:
interrupted sleep physical injuries broken glasses property damage behavioural incidents emotional exhaustion
At the same time, I continue supporting:
a young adult transitioning from care a profoundly disabled nonverbal teenager a younger child managing trauma and anxiety
These realities are rarely acknowledged within policy discussions about foster care and disability systems.
I also have 2 grandchildren I enjoy spending time with and 3 adult children. I receive NDIS funding for 8 hours a day for the 16 year old, who is 1:1, sometimes 2:1, it takes $560 plus kms, almost $4,000 per week of his NDIS funding to support him for 8 hours a day, I support him for 16 hours a day for $4.78ph, however this also covers food,
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clothing, school fees, medical and every day costs. I don’t get paid for doing this the allowance which equates to. $4.78 covers everything.
Positive Outcomes Are Possible
Despite the challenges, stable long-term care changes lives.
The sibling group have remained together.
The eldest girl:
completed HSC Life Skills
completed a Certificate III in Music achieved a Band 6 in Music commenced study at JMC Academy received a scholarship for young people in out-of-home care purchased her own vehicle is progressing toward independence
The middle child, despite profound disability and trauma:
is developing communication skills has meaningful routines and emotional regulation strategies demonstrates extraordinary intelligence and musical ability experiences safety, consistency and attachment
The youngest child is academically gifted, musically talented and deeply compassionate despite significant trauma exposure.
These outcomes occurred because of long-term stable care, persistence, advocacy and relationship-based support.
He was asked to leave the pre-school at 3 years of age due to unsafe behaviours, working with a team he was allowed to stay. He goes back every year to do a presentation on the Solar System to the toddlers. He will go on to be a performer. He has a music room and can pick any instrument up and just play!
He has a following at school from Kindy to year 12, he is seen every day with a group of students that just love being around him. I asked him one day who was the student hiding behind the tree and he said that’s ? he’s not ready to join us yet but he soon will be.
He goes to disability circus where he is adored by everyone, always has a smile on his face and greets everyone with a huge welcome.
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Recommendations for Reform
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Cross-Agency Recognition of Disability Evidence Create a shared evidence system so carers do not repeatedly provide the same disability documentation to multiple government agencies.
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Permanent Recognition for Lifelong Disabilities For conditions such as ASD Level 3 with intellectual disability, agencies should reduce repetitive reassessment requirements.
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Coordinated Transition Planning Introduce mandatory cross-agency transition planning from age 14 for young people with disability in out-of-home care.
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Specialist Disability Caseworkers Ensure children with complex disability are supported by trained workers with disability expertise.
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Flexible Financial Support for Carers Allow financial care plans to reflect rising costs and specialist educational or disability related expenses.
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Recognition of Legal Guardianship Across Systems Ensure guardianship orders are recognised consistently by Medicare, banks, health services and government agencies.
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Simplified Tribunal and Review Processes Reduce unnecessary duplication in NDIS reviews, appeals and NCAT processes.
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Support for Ageing Carers Provide practical planning and long-term support pathways for ageing carers supporting profoundly disabled young people.
Conclusion
Submission 356
This submission is not intended as criticism of individual workers. Throughout our journey, there have been many dedicated professionals who genuinely cared about the children’s wellbeing.
However, the overall system is fragmented, repetitive and often disconnected from the realities faced by carers supporting children with disability and trauma.
The success of these children demonstrates what stable care can achieve when carers are supported rather than exhausted by administrative systems.
I remain proud of keeping this sibling group together and would make the same decision again. However, carers cannot continue carrying this level of responsibility without meaningful systemic reform.
Children with disability in out-of-home care require systems that work together, recognise lived realities and prioritise long-term stability over repeated administrative processes.
These children will be supported beyond 18, the 16 year old will be supported by my adult son, I will continue to do what I do, until no longer possible, the alternative is they re-enter the foster care system, highly unlikely that you will find a carer to take all 3, then the psychological trauma and behaviours increase. What would the cost to the government be? How does NDIS refer to Reasonable and necessary or value for money. I continue to live in a fishbowl, continually asked for justification, I can provide a list of people who would all say the same thing that I have given these kids the best life they could ever have had. They came to me after an expression of interest to the following day agreeing to take them. They were all in separate placements. Even the magistrate at the guardianship hearing said it is the strongest success story she had ever seen. NDIS should never refer to child with disability in out of home care in the same context as value for money.