Submission 1676
and all persons cc'd within this email.
Dear- everyone included in the and guidance of G-
Please take the time to read our situation below. This is the reality of “us” as a family and our Daughter
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for the NDIS to read, not just to rely on a report or recommendation from specialists based on a
piece of paper.
“This is not intended to make any person feel or cause to feel offended within this email it is addressed to. It is directed to the ND/5 as an organisation itselt and how the organisation and its’ impact of services and funds for the supports provided to G- are deficient and ineffective. As a result this effects her directlY, our familY, and the people who are involved in <111!1’s care, safety and wellbeing.”
I am sure you may have read and seen about what happened on the news in the last few days in regards to the family in Mosman Park and two boys within the family were found to have Autism.
As a loving father and devoted husband to my wife and our three beautiful children, one of which who is ADHD combined and ASD 3 - hear of this while away at work, and to hear my wife in tears and distressed due to the fact that the two boys on the news have autism, are a young family living in an affluent suburb, and the parents faced struggles “behind closed doors” that even their closest family and friends did not know about, it has had a detrimental effect on us as a whole family physically, emotionally, and mentally. This struck a chord due to the fact, our family situation with a child who is “gifted” and “neurodiverse” is very similar, although we are not “affluent” or “rich”. Hearing my wifes’ voice over the phone tell the story, her being in tears, made me be in tears while away at work (FIFO). Knowing a family with two boys having special needs, it must have taken a mental and physical toll on the parents which is “possibly”, not confirmed at this stage, one of the causes as well as the financial strain, for this terrible and sad state of events to occur. It would not surprise me in the slightest if it was due to how the parents, (father/mother or both) could not take it anymore hence why it turned out like this. It possibly turned out like this due to the NDIS and the organisation as a whole, have failed to provide and/or declined the adequate and specific requests from the parents who know their children the best, and this is the “worst possible outcome” for every parent with a child who has “special needs” and a reality which I have stated previously on more than one occasion. What will it take for the NDIS to take swift action, implement, and adequately provide the specific needs outlined to prevent this, until something like this mentioned above occurs, and this is exactly
Submission 1676
what we are close to experiencing. It not just a matter of time, but when, that our beautiful daughter <tlll will do the same thing to herself or some else.
I am writing this on my nightshift lunch break. My wife and I want to be the voice for G-and all the parents who have children with special needs, due to the fact the government (in this case NDIS), have failed to provide sufficient support for not only the children, but also the “parents”. Understandably, the supports and finances in place are more directed for the person who is impacted in their life with a life-long condition. But, when it is a child and the “parents” are caring for them, it is emotionally physically demanding every day and night, while at work and at home, always trying to think what is best for your child or person you care for and love. There are, if not, enough funds or supports and emphasis into the sufficient respite for parents to take a step back and get assistance, help, or time away from the child and/ or children, and for the child or person with a life-long condition themselves.
The NDIS, since inception, has been “flawed” and “disfunctional”. There is so much red-tape, hoops to jump over, different versions of “processes” from employees of the NDIS who tell you one process for a particular need and try to help you get that need, and on the next occasion, when consulting with a different employee from the same company, you are told something different and then the particular need is deemed irrelevant and not required, therefore it is taken out of the plan. It is also difficult to “justify” specific financial and allied health/ medical needs. This all started with other participants on the NDIS when it was first introduced, when it was found the participants were using the funds for their personal and financial gain and not for its’ intended purpose. It has, until now, since the crackdown and investigation into the particular participants in question, caused a dire strain financially, mentally and physically, on all the legitimate families who do everything right under the the NDIS scheme, and in particular for the parents, such my wif– and the children who need i-. For years, since G-was only 2 years of age, we done the right thing, followed processes, gone to numerous specialist appointments, spent our joint savings (which we tried so hard to save for our childrens’ future and beyond) to conduct the required reports/ documentation for any allied health professionals, and for the last two to three years for the NDIS.
Basically, we had to “explain, plead, beg, and go on our hands and knees” to the NDIS, just to fight and prove for one or multiple things which are needed for on every plan review (3rd upcoming, overdue NDIS plan from the 21/ 01/ 2026 once the NDIS “eventually”, after months of waiting [which is another major downfall]), review the plan, they reduce the funding, and remove a particular need(s) thinking it is not necessary in this ca-an ever, it is for G- The NDIS just read what is in front of them, and make the final outcome what they “think” is fit for purpose for the particular case. What is the point of going through all the financial, physical, and emotional stress as parents to provide evidence and reports to the NDIS, when after they read it, their evaluation is way out of the spectrum of what we and/or the children actually require. G-requires “significant and intensive” therapies and ongoing supports, not only for herself but forlll also.
- requires “significant” support in the family home as well as outside of the family, in the community, to assist-a the fact - not have the same mental capacity as a typical lOyo girl would have. These are basic living and social skills such as change her own clothes, tie her own shoelaces if going to school or going out places, shower on her own, comb her hair, have self hygiene awareness (toileting and puberty i.e. period), prepare food for herself or decide what she wants, clean her room, assist in basic house chores, help her younger siblings, and when outside in public or at home, being self-aware and aware of her surroundings and/ or who is around her. As all the attention, focus, and assistance has been intensively placed on Gracy by myself and in particular - two younger siblings, brother-7yo ), and ~o require their mother for the same treatment as well as the same love, attention and ~eceives from her mother as well as I and this is evident as both the boys say and feel they
Submission 1676
are “left out and/or neglegted”. For the the past year, -ow doing and saying exactly verbatim the same thing-He is saying things and doing things like: “I hate you mum”, “I don’t love you mum”, “that food is disgusting”, “I don’t want you mum” and copies the same expression-when she is having a meltdow~lso physically hits his brother and sister and- and I. This is not typical of a 4yo and let alone another burden endure, in particular Ill, as she has more than enough struggles to deal with pertainin nd her place of work. - desperately needs assistance as her mental health is on a last fine piece of string, she is visibly past and has taken into consideration self harm and as a h..,ould know but I don’t as masking the issue she has from everyone and I cannot monitor- as well as all three of our children 24/7, particularly working away.
As you are aware- who will be turning 11 soon (li/02), has grown so ~ally (now in the puberty stage), and is still struggling w ith her emotional regulation, mental wellbeing (sducidal thoughts, anxiety, social interactions in and out of the family home, in public spaces, and in particular, her school) and daily living skills. It has gotten worse over the years, even when the first plan for the NDIS was given as the funds were never sufficient in the first place. Upon the second review, the NDIS significantly reduced the funding, and removed psychology, thinking it is not necessary due to the PBS already having the service incorporated when it actually is necessary as a seperate service.
At 11 years of- still, at all times, requires someone to assist her in all the daily tasks (please refer to the above section mentioned previously). - not have any friends inside or outside of school and does not engage in physical activities and/or sports. She is not a sport person and we have addressed and mentioned this on multiple occasions that if she does not like to participate in a sport or something that is not of interest to her, why force it on her which makes the situation for her worse. The funds allocated for her regarding participation in the wider community, it is more directly related for fitness which there are not many places that offer it and, as we have perviously mentioned she does not like sport and it is a waste of funds when it can be actually be used for other social engagements such as Pokemon Clubs, Minecraft Clubs, just to mention as examples which again, there are very limited to source and find, and fully booked ahead in advance.-e she was a young child at the age of 2, is passionate and has a desired affection for nature, animals, going outdoors such as bush walk exploring, basically things of interest to her. Gracy is also into researching historical facts and reading books such as geography, history, stars & planets. She was never into make believe fairytales, bedtime stories, playing with barbie dolls and play dress-ups, as any 2 year old would be.
-n since her first day of kindy until this present day, is always left out from invites from her peers in school such as birthday parties, sleep overs, places of entertainment, all due to the fact they are scared of ..,e is extremely and emotionally disregulated. This also includes participating in school events like dance competitions (which she loves and is passionate about), school camps, excursions, school concerts all due to because of what was previously mentioned in the last sentence. Can you imagine what it feels like for a lOyo, going to age 11, a young and innocent girl, and as parents, your own daughter, to feel left out and alone? We see it, know it and how soul destroying it i-and how it affects us as parents,
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not want to go back to school which starts this week-and I mentioned to her we are now seriously considering a change of school who can provide the supports and assistance she requires.The stress, anxiety, the outbursts, all emotional disregardulation came out nd the school term has not started yet as she said she loves the school she is going t current school, have tried their absolute best to facilitat~s needs, but they cannot, as they have limited tools, strategies, and supports in place to accommodate and it can be seen from us as parents, that they have given ~ over the course of last year, in particular from the start of the second semester. She become physically and verbally
Submission 1676
aggressive towards her peers, other staff within the school, in particular the school principal. Gllllll’annot self regulate her emotions and meltdow ns and her condition inside her mind is “act before you think”, unlike a normal person such as I, “think before you act”. This is part of her mental condition and once she has acted the way she did, she gets scared as she knows and understands between right and wrong and her anxiety and guilt gets worse than before she started in -ce. W-nate that the school completely understand the circumstances surroundnd know tha- is not like that. But, to receive phone calls from the school daily to pick upthe school cannot cope w ith her, even one hour int-art of school period to pick her up all because of the issues described which occurs daily at school, can you imagine how much stress (physically and emotionally) has been placed on - It has affected her current place of employ,_ is now to the point, being close of dismissal due to having leav- pick up and look after Gracy for the rest of the school day and then to go back to school and pick up Gracy’s brothers on a daily basis during the second semester, in particular near the end of term 3 through into the whole he anxiousness, fear, stress,-always looking at her phone and waiting for the phone number fro hool, is simply put “like a stalker harassing you and you are too afraid to answer the phone”. That is the feeling Aiza has now and it also-h the feeling of shame, guilt, being looked at by other parents or pas-n going to pick G-up at her school The school has tried everythi they can which Aiza and I am deeply grateful and thankful for, but we know, the current school s in, is not suitable for her condition.
All of the above outlined, stems from the extreme lack of funding and support from the NDIS, just set to what the organisation considers sufficient. To “stretch” your limited budget, so you can facilitate the support services over the course of a year, at once per fortnight, do the NDIS think it is beneficial- I can tell you, it is not. Once a fortnight for three sessions consisting of PBS, OT, Speech,.cannot learn and develop the strategies or gain benefit from it. It is actually counter-productive and has shown from the start of 2025 until this present point of time how detrimental it has had an impact nd our family. -has sacrificed and is still taking the risk of losing her role at her current place of employment due to no support, and lack thereo- by leaving work mid-shift or not attending at all, adding the fact of taking care of the two boys also. I also had to take a substantial financial reduction in my FIFO role and had to change company as well as roster, from a well paid 2/1 roster, to a large discrepancy (reduction) in pay per fortnight on a 8/6 roster, so I can be home more frequently to assis– and the boys. Our marriage is now at the point of divorce all because NDIS cannot fulfil their dulT:’!~’n providing the funds and services for families and children in dire need.
In conclusion, moving forward, out of the best interests- recommend us as a w hole, who are included in this email, to work as a team, which I vehemently outlined since day one, but for some reason, there is always an excuse not to provide information all because of privacy and all other inconveniences. Lets cut through the red-tape, privacy agreements, and all other inconvenient rules that are always in the way and “Communicate” together to find a solutioonce and for all. This is for a child whos’ future is in our hands and we are all responsible in one way or another to find the best possible outcome and who have been the most supportive through good times and bad throughout her young journey.■■■■are past the point of signing privacy documents and are mentally and physically worn out from organisations who are meant to assist us (in this case NDIS) w ho do not. As a wife and husband, mother and father, we - as well as the boys equally and will not ever give up on them. Our three children have a place in this world and a bright future ahead of them, but this problem, which everyone within this email should understand, is all because of a system (NDIS), that is broken and dysfunctional and works against families not with them. The end result is w hat has happened on the news, as I stated from the beginning in this email. We do not want to succumb to this, but it is becoming that way. Our children, especially-uld not be the one to be blamed for all this which- and I can feel from her anwas brought into this
Submission 1676
world for a reason and purpose. Regardless if she was born neurodiverse or not, our love and support for her will and always will be unwavering, and we will not let the NDIS destroy - and future.
To everyone in this email,_ and I are thankful and grateful for your love, support and care-I will again strongly re-iterate, that all this information outlined within this email, is intended to be directed towards the NDIS and the organisation itself, not the persons who this is addressed to.