Submission 2786
NDIS submissions
I am the nominee of 2 children who will be affected by this bill.
Both children have multiple disabilities under the new bill only 1 of these disabilities will qualify for NDIS meaning that my younger child who’s main recognised disability for NDIS purposes is a neurological condition which affects his speech will only receive funding for this disability however he also has a disability which affects his gross and fine motor skills and another which affects his ability to swallow and therefore eat and drink safely. According to the bill he will revive funding for the speech but will receive no funding in order to keep him safe while he eats and will receive no funding to build and maintain his mobility and therefore independence. He has visited sick bay 7 times since starting school in 2025 for head injuries due to falling and failing to protect his head. Whilst a NDIS participant he he improved his mobility from the 5th percentile to the 35th percentile but still struggles. Without these supports he will likely regress and will be unable to access the community, will be at risk at school, will be at risk of choking and aspiration of fluids and will likely need further medical intervention due to this. He will have further falls and injuries requiring medical care and the costs saved within the NDIS scheme will pass to other sections of the community such as medical. In addition he will be less likely to be able to attend school, access education and in the long term contribute meaningfully to society maintaining employment. This means he will be dependent upon social care by way of benefits and the cost to government will be increased. This is the economic reality to say nothing of the fact that he is 7 and faces a life of challenges which can be ameliorated by the provision of supports. This is shown by the progress he has already made.
My other child is autistic and funding for his disability is based upon his functional capacity. In 2024 his plan was dismally underfunded. At this point I had previously provide the agency with all required reports, sought internal review and asked repeatedly for a plan which met his needs. I had sought support from mainstream services and exhausted all other options. I was therefore forced to escalate the matter to ART. Despite extensive reports and a carer impact statement. Upon review at ART and receiving a report from their own expert which supported my position NDIA agreed to increase his plan by over $80,000. This took 4 hearing s at which the NDIA were represented by Agnew Moray a large city based firm I Melbourne at I would presume significant cost.
Prior to his funding being adjusted he attended CAYMHS weekly for approximately 18 months, was seen by a psychiatrist at RCH and after he attempted to end his own life at the age of 7 he was admitted to Monash Children’s Hosptial OASIS unit (a secure psychiatric ward) along with his brother and myself for 2 weeks. Again I sure the cost of this was significant. Again without sufficient funding from NDIS he is likely to regress and the cost of his care will be shifted to mainstream medical services such as our hospitals and DFFS should our family unit breakdown and I be unable to care for him. He is a bright child who given the right supports will be an economically valuable member of society who will be capable of engaging in employment and contributing economically to society without the supports provided by NDIS his future is uncertain and it is likely he will be reliant upon state support and benefits for much if not all of his life. Cutting this funding now will not save money in the long term it will simply shift the expenses to sometime in the future or to other agencies such as Medicare, hospitals, child protection and police. It is short sighted and irresponsible and will lead to loss of life.
Submission 2786
The bill will remove the option for meaningful review by courts and tribunals in Australia fundamentally damaging the separation of powers and leading to disabled people having no ability to obtain meaningful review of their plans Given that the evidence shows that over 80% of participants who appeal to ART are successful this is of grave concern. It would not be unreasonable to suggest that the agency should be subject to higher scrutiny rather than less if their decisions are overturned on such a regular basis.
Further the agency will be allowed to limit plans and change procedures without oversight once again there will be no option for meaningful review, no separation of powers a central tenant to democracy and no one to advocate for those unable to do so.
The removal of human oversight of plans is a dangerous step for the scheme as disability is a multifaceted issue which cannot be easily addressed by tick box systems
I would also like to raise concerns at the agency being allowed to define “functional capacity” and “parental responsibility”
Removing the need to take into account the participants personal circumstances will significantly affect both of my children as neither child’s plan will take into account the impact the others disability has on them nor will it take into account the fact that my capacity is already stretched to breaking point as that “parental responsibility” does not, could not and cannot maintain this level of care.
The bill will allow the agency to determine what is “parental responsibility” as matters stand they claim that “normal parental responsibility” includes driving my child to therapy over 60km from his home (126k round trip), attending and engaging with said therapy for 3 hours, driving him back, implementing said therapy 3-5 times per week capacity permitting, while caring for another disabled child and maintaining a safe, clean home and environment. On 40 occasions per year. This is 1 small fraction of what the agency deems normal parental responsibility as it only covers 1 therapy and despite my request for funding for transport and a support worker to assist this has been denied on 3 occasions on the basis of “normal parental responsibility” this bill pertains to allow the agency to extend what parental responsibility encompasses it would seem that these decisions are made by people with no understanding or care about what parents of children with disabilities face on a day to day basis and the idea that you can build a parents capacity to meet needs which far exceed anyone’s capacity is terrifying. Parents and carers are burnt out and the suggestion that we should somehow achieve more shows a complete lack of humanity and respect for human rights.
The bill also provides that you will not be able to access the NDIS unless you have tried available treatments. Many participants and their carers live in poverty dependant upon state benefits. Many treatments require overseas travel which is not possible for many participants due to their disability or for the remainder due to their economic situation. Many other treatments exceed the costs of most participants. Unless the government is suggesting that each available treatment will be funded in the hope that “autism” or an “amputation” can be “fixed” so that supports are no longer required this is a condition which breaches the human rights of participants.
Submission 2786
In addition to this any participants and their carers already suffer from a degree of medical trauma from the level of advocacy involved in obtaining a diagnosis or the treatment that is currently recommended. Never mind attempting all available treatments. This suggestion again is based on an entire lack of understanding of the individual needs and the systemic barriers to health care that so many already face.
The modelling shows many participants being exited from the scheme. The need does not disappear it will simply be moved to tiger systems and result in the loss of life to participants and their families.
I am aware that many participants do not have a nominee who is a competent advocate and as such are already missing significant opportunities and funding within the system. I am a qualified lawyer who currently is unable to work due to the children’s care needs. As such I have advocated for my children and fear that these changes will leave them disadvantaged, neglected and unable to access community and life experiences. This submission could be longer and should be however my capacity is limited by the timescale and the care of my children.
There are very real concerns that I have raised here with regards to my children and I am acutely aware that many participants do not have the ability to speak up in relation to this submission. They do not have an advocate and they are unable to participate in this process if you ignore these issues you are placing the most vulnerable members of our society at grave risk. All that is required for evil to triumph is for good men to do nothing. Allowing this bill to pass will not be doing nothing. It will be actively supporting the dehumanisation and oppression of those who are unable to speak for themselves. We should judge a society based on how it treats it most vulnerable and this bill places their lives at risk.
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