SUMMARY
This submission outlines my concerns regarding the NDIS Future Generations Bill 2026 from the perspective of a sister, wife, mother, carer, and health professional. It highlights the essential role the NDIS plays in supporting people with disability and their families, particularly those living in regional areas where access to services is limited. My submission raises concerns about reduced supports, barriers to diagnosis and early intervention, the ongoing challenges faced by autistic children, women and girls, inadequate support for carers, and the financial, emotional and professional sacrifices families often make to meet disability-related needs. While I support stronger oversight and accountability within the NDIS, I believe reforms must protect vulnerable people, recognise the value of early intervention, and ensure that disabled people, carers, and families are genuinely heard when decisions are made about the future of the scheme.
To the Senate Committee,
I am a sister of a person with a lifelong disability, a wife of an autistic man, a mother of two autistic children. To say life is difficult every day and has many challenges I navigate almost exclusively alone is an understatement and I am writing to share my concerns about the NDIS Future Generations Bill 2026.
The NDIS matters to me because without it my sister could not access the community and I alone cannot support her high needs. She currently lives with my 83yo mother who is finding caring for her more and more difficult. I live over an hour away and supporting both my sister and mother on a daily basis is not possible. My sister needs the NDIS funding to live a somewhat meaningful life. Without it she would not leave the house. Sadly, she has recently had her funding cut. It seems that psychology is not considered something she needs, yet both her recovery coach, her psychologist, my mother and I believe it is vital. My sister is on a Disability Support Pension, she cannot possibly afford $250+ per session of psychology, even with the 10 sessions where the government offers the rebate, that rebate doesn’t even cover half the cost. How are any people with mental health issues meant to get help and improve if they can’t afford help?
I also care for my children, aged 12 and 14, who have only recently gotten a relatively small amount of NDIS funding. Prior to this, we were funding what support we could access (in regional Vic it is very hard to access appropriate health professionals for support for children with ASD, literally years on waiting lists for OT, speech pathology and psychology) and afford. It took us 6 years and 4 psychologists assessing our daughter to finally get her diagnosis – ASD with a PDA profile and ADHD. Do you know how much a psychologist charges for all the testing to get these diagnoses? Thousands of dollars. So we paid 3 psychologists thousands and thousands of dollars and they couldn’t diagnose her because the school teacher couldn’t recognise any subtle signs of her ASD (she is very high masking). Why is this? Because the teachers are not trained to recognise subtle signs, or even non-subtle signs of ASD. Yet, the DSM requires evidence of these signs in more than one area,
- one being school.
We had to find a specialist psychologist who actually trains other health professionals to diagnose ASD in order to get a diagnosis. She actually apologised for her colleagues who are so poor at diagnosing ASD in high masking females, and said she was embarrassed that they took our money for such a poor service. We were also very lucky that by this stage we had our daughter at the private school where her teacher had great knowledge of ASD and was able to pick up subtle signs of her ASD.
I believe this is one area the government needs to look at. Why is it acceptable that we have paid 3 psychologists, supposedly qualified to assess for ASD, yet not actually having the skills to do so, and they happily charged us thousands of dollars… for nothing…
Funding these many psychologists, as well as 3 years of weekly equine assisted therapy (we were unable to get any psychology help, unable to get OT, unable to get Speech, we were on multiple wait lists for years) has put us in deep debt. Now that we have a little support through NDIS we have a plan to pay off our debt. Without NDIS we would just be getting further in debt.
I am also a nurse with post graduate qualifications which I have spent a lot of money and time working to achieve. Prior to my children’s difficulties becoming more unmanageable, I was working 6 days a week – partly at a public hospital in a senior position, and part as a lecturer at a regional university. I loved my work and felt I was really making a difference in both the current health system and in the future generations of nurses. Due to no family or community support (which most families with ASD children face), I had to resign from my position at the university. This position was the pinnacle of my career, one I worked over 20 years post school to achieve; to say this was heartbreaking on a personal level is an understatement. But, like many mothers, my children and husband’s (and sister and mother’s) needs had to be prioritised. So not only have I lost part of myself/who I am/what made me feel proud and a contributing member of society but I have lost over half my income, and our family has suffered. My husband and I had a plan for our retirement and old age that is now gone, in fact as mentioned above, we are in debt.
Living regionally, we have had to make the expensive decision to send our children to a private school. Why you ask when we are already experiencing financial troubles? Because the local state schools are incapable of providing a safe and supportive environment for ASD children. Regional schools do not attract the same calibre of teachers as city schools, and our experience of teachers these days in the public system is that there is a HUGE deficit in their understanding of ASD/ADHD and the support needed for children with these disabilities. The private school our children attend (redacted) has been incredibly supportive through some very difficult times including my son attempting to commit suicide at 12yo. Their teachers and heads of school (primary & secondary), as well as heads of year level, are all very open to learning about our children’s specific needs and the Wellbeing program is fantastic; they contact us regularly to check in and have gone above and beyond in every way. They also have a full time registered nurse at the school who has a great understanding of ASD and is so caring and proactive with our children. We just would not get anywhere near this care for our children at the local state schools. Given that children spend so much of their time at school it is imperative for us that they feel safe, understood and cared for.
My daughter’s first years at a public school in the suburbs of Melbourne were so difficult: we had daily school refusal and very limited
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support for that. This is why we moved regionally, to a very small primary school which was at that time terrific for our children. We believe that if we sent our children to the local high schools, we would be back in the position of daily school refusal again, which would not be good for our children, or us being able to work.
The help my children are now receiving due to the funding will, we truly believe, mean they will become functioning adults, able to contribute meaningfully to society. Both have high IQs, so if their low ability to emotionally regulate and understand how the world works so they can fit in, they have every chance of being amazing humans who contribute to the community and pay taxes, which can then fund the next generation needing NDIS. If children like mine receive the right support, they should be well equipped and not need life- long NDIS. It is my hope that by 18 the NDIS is in the past, something we will be grateful for but no longer need.
However, I am worried about access to the right support becoming harder, people being disbelieved, support being reduced, and the impact on autistic people, women and girls especially (being overlooked as they have been now for generations) delays in assessment and support like we have experienced, and vulnerable people falling through the cracks. Investing in children/youth can mean many will have wonderful and highly functional lives. Even now, getting access to supports means expensive FCA, and even when these show a need for specific supports, they are often denied by the NDIS. The reasons we got for many of the points made by the OT (who did an excellent and thorough FCA for our daughter) being denied were ‘that is parent responsibility’. What the NDIS seem unable to understand is that many ASD children have needs which are SO much more than ‘normal’ children their age. My daughter’s disability has almost broken our family. Daily crisis, hours of violence and screaming, sibling and both parents at breaking point. When this is EVERY day for YEARS, it is more than ‘parental responsibility’. Until you have lived this life, or one similar, you cannot possibly understand. But, I am happy to help anyone interested to understand. The problem is, other people are not interested in understanding, or in helping. They just offer ridiculous advice which is of no help, in fact it is often incredibly damaging.
Many people with disability, families, and carers (like myself) are already exhausted from once having to fight for support and prove their needs. I ask that any changes to the NDIS protect the rights, dignity, safety, and wellbeing of disabled people and their families. Please ensure that disabled people and the people who support them are properly listened to when making decisions about the future of the NDIS. The recent awful event in Mosman Park, Perth where those poor parents felt they had no choice but to kill themselves and their two very high needs autistic children, highlights that it is not a matter of how much money carers/parents have, money can’t buy trustworthy, suitably educated and reliable lifetime carers for Australian children. We need a better system of support for carers in this country. Currently the only support we have been offered is to ring Carer Gateway. I was unable to do this, to have to go through the ‘story’ again was just beyond my capacity. After 2 years of living in hell, my husband finally rang. We were offered one 3 hours session of ‘decluttering’. That was it. My husband emailed Carer Gateway thanking them for the session, telling them if was very helpful and asking if we could possibly have more. We were given one more
- session and then he was told that if we wanted any further help, perhaps his wife should ring them. Why was this? Why could my husband not ring asking for help on behalf of our family? Why must I? Is this sexism? It was so disappointing that after 2 years of inability to ask for help, when we finally asked, this is the ‘help’ we got. Carer Gateway is funded by the government. My husband and I have paid tax for over 30 years each. Yet we are treated so badly. If I had the energy/capacity I would send a letter of complaint, so others are not treated so badly.
Life for my daughter, my family and myself has really improved since my daughter’s 3 years of self-funded Equine Assisted Learning. The practitioner has formal training in EAL, is ASD with PDA and ADHD (the same diagnosis as my daughter) and has her own child with this diagnosis. So to say she has lived experience is an understatement. What she could offer my 10yo daughter, who had no diagnosis but knew something wasn’t right, was hope and someone who truly saw her for who she was. Her weekly sessions taught her about neurodivergence, and when we finally got the diagnosis she learnt about her specific diagnosis. It was such a positive experience that when she did get her diagnosis she was overjoyed to have a confirmation of what she already thought she had. Her therapist had the same diagnosis and had a husband, a son, a house and a business – what a great example for my daughter of what she could also have – everything she wanted was possible. Yet, the NDIS will not fund this, because this practitioner isn’t an OT or psychologist. An OT and a psychologist are triple and quadruple the price per session, and only 50 mins, whereas our equine therapist was a full hour. My daughter is now seeing an OT and a psychologist, thanks to NDIS funding and also being on wait lists for years. I have to say, the changes in her with her equine therapist were quicker, bigger and certainly gave her more immediate confidence than what we are seeing with either OT or psychologist. Given the wait lists regionally are years, why can’t therapists like equine be permitted under NDIS? Money saving, earlier intervention…???
When my daughter was approved for NDIS, she received significantly less than my son, yet she has much higher needs. We were advised to have a FCA done, which we did as soon as we could get availability with a good OT. Just this month we had her case looked at by an ‘NDIS planner’ – I am still not sure what qualification, if any, any of these ‘planners’ have, they all seem to have completely different ideas and knowledge which I find quite scary and concerning. Almost all of the recommendations from the FCA were declined, and some of the things in her first/current plan were taken away, even though they had been recommended by her paediatrician and approved initially. The one improvement was that she be given 3 hours a week, instead of a fortnight, of community participation/access with a support worker. However, like last plan, this is on a 1:2 basis. So we are expected to find a support worker, who has the training/ability to manage two disabled children at the same time. Because our funding is only for a 1:2 ratio. My daughter is difficult enough to manage on a 1:1 basis by me alone, and I believe I am the one who knows her best and can pre-empt her behaviour/reactions best. How would I even begin to find someone who is capable to manage my daughter safely, as well as another unknown child at the same time? How could I possibly trust someone I don’t know, with minimal or any qualification at all, with the emotional and physical safety of my child? So, we are then left with using the funding on a
- On a 1:1 basis which means 3 hours once a fortnight. That means, that finally I will get 3 hours once a fortnight to give to my son, who has missed out on my attention for most of his life. 3 hours once a fortnight is not much is it? And it doesn’t give me any time for myself and my sanity, which in all honesty is almost non-existent these days. I am 50 years old, I am emotionally, mentally and physically beyond drained. I have sustained daily abuse from my daughter for many years now – both emotional, mental and physical. I often have to wear long sleeves if leaving the house to hide the bruises on my arms from her. We have many holes in the plaster walls, many broken/ruined household items including special gifts from my son to me. According to the NDIS, my sanity and any time for me is of no importance. Yet, if I fall apart and cannot care for my daughter, will they? My husband is also ASD with PDA profile and ADHD and doesn’t manager our daughter when she is emotionally dysregulated, as he also has difficulties with that. So now I am the beaten mother who cares for her daughter and family, hoping that what help we can afford, and the little extra from the NDIS, will give my bright and super intelligent girl a real future. I often wonder if we had managed to get a diagnosis 5 years before when we first started, how much better things would have been in the era where NDIS actually gave families the help they needed.
Another concern I have is that the reason for the changes in NDIS are due to so much money being misspent/wasted in previous years. People with ASD children who were less needy than my daughter got so much when the NDIS first started. House cleaning because both parents worked full time, which I get, if they both work full time then really their taxes are paying more than the house cleaning vs if one had to stop work like I have. I hear often of people ‘ripping off the system’. Having support workers who have no formal qualifications is also not ok. For people working with those whom have disabilities, there should be proper oversight. These are the most vulnerable people in our society. In my opinion, the government should manage all NDIS care and payments etc. Not have hundreds of small bodies and individuals working under the scheme. This is how so many cracks open and people fall through, and there is fraud and mismanagement of money. NDIS funding is actually tax payer money. So it is my money being mismanaged. And that is not ok.
Thank you for considering my submission. I could write a thesis, but I think at 4 pages maybe you have already stopped reading
Thank you for considering my story,
Kind regards