Submission 1724
Submission to the Senate Community Affairs Legislation Committee
I am writing this submission at Sam, after fewer than two hours of sleep. I have been awake since 3:30am sitting with my younger son, who is non-verbal and nearly twelve, unable to tell me what is wrong. This is not unusual. It is most nights. I am writing it anyway, because this Bill matters too much not to.
My name is . I am a single mother and the full-time carer of two boys, and , both of whom have autism and both of whom have been participants in the NDIS for between five and eight years. I homeschool both of them as the public education system was dismantling their well being, health, and ability to flourish. That decision was not taken lightly. It is the right one for them, and it means I am their mother, their teacher, their therapist’s support, their case manager, and their overnight carer - every single day, alone.
is non-verbal. He has severe anxiety, a dog phobia so acute that he screams and bolts every time
he sees one, sensory processing disorder, Tourette’s syndrome, neurological ties, OCD, and Pervasive Demand Avoidance. He cannot identify dangers on the road. He cannot tell me when he is soiled or in pain. He can unlock our front door and has attempted to run onto the main road multiple times. For safety he sleeps in my bed, because he cannot be left alone overnight. Despite medication and a qualified sleep consultant, he wakes frequently from 3am onwards and sometimes stays awake all night without a nap the next day. This has been our reality for over nine years. , his older brother, lives with the daily anxiety of watching his little brother run toward traffic. Both boys need me every hour of every day.
I work part-time as an After Hours Registered Nurse Coordinator, from home, on nights - because it is the only way I can earn an income while their father covers care. I come off a night shift and provide full care all day. I do not get to sleep. I have done this for years.
I also have my own significant health conditions. I have Arnold-Chiari Malformation, a chronic spinal condition causing constant pain and fatigue. I have suspected Cranio-Cervical Instability, Tethered Cord syndrome, and Occipital Neuralgia, which means that every time I bend my head forward - every time I pick something up, clean the house, run after - I experience lightning-bolt nerve pain. I am allergic to nearly all pain medications. I am also partially deaf, which means I have to be in constant visual contact with because I cannot always hear him. I last attended my own medical appointment in 2019. The caring role does not allow for it. As I write this, I am in pain. I also have a rental inspection today. I cleaned the house myself, because there is no one else. The muscle fatigue that followed was severe. This is an ordinary day.
I have applied for NDIS access for myself twice. My Arnold-Chiari Malformation was previously recognised as a basis for access, but that changed. I was then asked to submit a functional capacity eamination - a report I could not afford as a single mother with no financial support and no capacity to take time away from caring for my sons to organise it. Each time I tried to progress my application,
Submission 1724
the goalposts moved. I have not been able to see my neurosurgeon in six years. He is a 1.5 hour drive away. On the days when my pain is at its worst and I have not slept, I do not consider it safe to drive that distance. So I do not go. The system that is supposed to support people with disability has, in my case, made it impossible to access that support - not because my conditions are not real or not serious, but because the administrative burden of proving them falls on a person who has no capacity left to carry it.
I am a qualified nurse and a qualified counsellor. I understand what self-care means. I understand what burnout
means. I am living it. The NDIS has determined that because I am a capable parent, I am responsible for all of this -
The overnight care, the sensory regulation, the homeschooling, the therapy carry-over, the household management, the medical advocacy, the hundred hours per year of administrative work per child just to access services. They have assessed my situation using a standard of what is reasonable and necessary that does not account for the fact that I am doing the work of a team of professionals, alone, with chronic pain, on two hours of sleep, every day.
's current funding provides 45 minutes of Occupational Therapy per fortnight. His plan has now run out of funds entirely. He has half an hour of speech therapy per week, for a child who cannot speak. He is non-verbal, but he can sing. He has beautiful tone. His music therapist believes there is a path to communication through that - but the funding is gone. A communication device that could change his life has not been provided. The therapists, who see him, all recommend far more hours than are funded. None of that is reflected in what he receives.
My concern about this Bill is not abstract. It is this: the supports my sons currently receive are already insufficient. They already do not cover what and need. Cutting them further - reducing funding for social and community participation, tightening eligibility, removing appeal rights, giving a minister unilateral power to reduce plan budgets without parliamentary oversight - would not save money. It would shift costs. Onto hospitals. Onto crisis services. Onto me. And I have nothing left to give.
The 2023 independent review said clearly that foundational supports must be established before any changes to eligibility or plan funding are made. Those supports do not exist yet. The government has set aside that roadmap without explanation. Meanwhile, 160,000 people are to be removed from the scheme, and average plans reduced by five thousand dollars. None of this was taken to the Australian people at the 2025 election. There was no mandate for changes of this scale.
People with autism make up close to half of all current NDIS participants. The Productivity Commission, which designed this scheme, identified autistic people as exactly the population the NDIS was built to serve. My sons are not edge cases. They are the reason this scheme exists. The claim that children like and were never meant to be covered is false, and the committee should say so.
I also want this committee to understand what this Bill means for carers like me. The government has framed cuts to community participation and in-home support as a matter of parental responsibility. I want to be direct about that framing: I am not asking the NDIS to parent my children. I am asking it to recognise that caring for two children with high and complex needs, while managing serious progressive conditions of my own, without access to any support for myself, is not sustainable. The cost of getting this wrong will not appear in the NDIS budget. It will appear in emergency departments, in carer
Submission 1724
breakdown, in children whose ne,eds g,o unm,et because the pers,on carin,g f,or th,em has n,othin,g l,eft. I am n,early at that point., I sh,ould n,ot be~
I am asking the committee to reject this Bill until foundati,onal supp,orts are in plaoe,. I am asking it to require the go,vernme,nt to ta ble full d,ownstream cost model Ung before any v,ote is take,n. I am asking it to require an ind,ependent human rights assessment before th,e B’ill passes. I am asking it to exte,nd the submission dea,dline,, because fifteen days is not adequate, c,onsultation f,or legislation of this magnitu,de. And I am asking it to r,ecomme,nd that a Disability Rights Act be establishe,d as a preco,ndition for fu rther structural r,eform, s,o that the rights ,of pe,ople, with disab’ility ar,e prote·cte,d regardless ·□f whlch m’inister holds office.
My b,o,ys deserve a futu r,e. deserves to communicate. de,serves a childho,,od that is not d,efin,ed by f,ear. And I deserve, at minimum, not to, be made, invisible, by the system I have sp,ent y,ears navigating on th,eir be,half. I ’will not stop adv,ocating for the,m. But I am askin_g th is c,ommittee to help.
v·ours sincer 1ely,
Moth,er and Carer 1of and
Ex-1Registere,d Nurse and ,Qualified Co,unse,Uor
Phone: [Y·our phone number]
Address: [You r posta l addr,ess]