Submission 2422
Dear Senators of the Community Affairs Legislation Committee,
Regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026
As a carer of two children receiving NDIS support aged in the 9- 17 age group I am concerned on several levels with the Bill before you.
Here are my concerns:
Parental responsibility
The Bills consideration and definition of ‘parental responsibility’ with regards to ‘informal supports’ of participants will have significant flow on effects for women like me and our ability to constructively contribute to the economy.
I do many things for my disabled children which other parents do not.
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Do other parents dress and shower their 12-year-old?
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Do other parents have to plan in detail every trip from the house to a public place in case their child has a meltdown?
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Do other parents have to help their children communicate with anyone outside a small circle of adults?
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Do other parents have to carry straws in their pocket so their child can drink in a restaurant?
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Do other parents spend hours at the school when their child has a meltdown, and the teachers aren’t trained to work through the child’s needs?
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Or pre visit outing venues to check for loud hand dryers and always carry a change of clothes and headphone!
While these might seem to be little things, they all add up to a significant ‘carer load’ well outside what is reasonably considered ‘normal’.
Pushing back on families with children with disabilities creates inequity and disadvantage.
This Bill must be very careful in how it defines ‘parental responsibility’ in deciding levels of ‘informal support’ and thus must not increase the burdens on families with members with a disability in this definition. This has flow on effects for women’s participation in the workforces as per my next point.
Carers lost to economy
In managing my carer responsibilities even with NDIS supports for my children I have still had to leave the permanent workforce, leaving a professional career, which previous Governments sponsored me to achieve through the HECS system.
To contribute to community, I take positions on local community boards and institutions some with small pretax allowances, others in a volunteer capacity but I fear the loss of NDIS supports and the additional carer load that will follow will force me to leave these roles. In turn my local community will lose out.
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Submission 2422
Social participation funding creates equity
Through cutting or limiting community and social participation funding support, as a blunt instrument by the minister, as outlined in the Bill, our family will likely experience increased social isolation as our two participants will not be able to participate in activities ‘normal’ children do. Such as attending the local pool, going to watch the football, or doing extra circular activities such as scouts and drama classes. As older parents we do not have relatives and friends to fill the void of support workers. Our children will simply not be able to participate without external support.
Geography, access and timing
I feel proposed legislation does not address geography and access to services and the impact this will have on those consider ‘less in need’ under tighter eligibility.
This bill is ill timed with no real alternatives available in my local community to replace or even substitute as a half measure what my children need if they are removed or have their plans reduced in the next 24 months.
Monash Health. Vic (Govt) were providing services in our area of Outer Southeast Melbourne for NDIS children clients; however, they ceased providing these services in 2024, dismantling a large, allied health team as they felt other providers in the market could meet these needs. These private services were always scant, oversubscribed and rarely available in our own or neighbouring Municipalities. (I spent 11 months seeking a speech therapist after we lost access to the Monash Health team).
With all States yet to fully lay out plans for Foundational supports, with the priority firstly Thriving kids and then for everyone else, it’s not known whether public or private providers will be involved (in Vic), outer suburbs risk being left with very limited services.
State Community health or n.f.ps will need time to develop these services and recruit staff to establish Thriving kids, Foundational supports and the community fund program which is also attached to this bill.
The New Inclusive Communities Fund money needs distributed to local government areas according to this need rather than large SA-4 regions and be delivered in LGAs according to known needs of those participants being removed from the NDIS.
It also needs to be targeted at the relevant demographics of the area - for example in growth areas programs for ‘tweens’ and teenagers would be essential. Please seek local government knowledge and advice, they know their communities, to implement the Inclusive Communities Fund.
The services for my children through local school supports - in a state which is underfunding education (Vic), or not for profits or community health in our region are currently non-existent or low.
Headspace locally, for example, services part time 4 days a week and is oversubscribed with a very small team covering in a high youth population in a LGA of 135,000 people (Cardinia).
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Submission 2422
The mental health services beyond the 10 appointments psychologist/OT, speech via GP referral (if we have money for the potential gap fees) will also not be adequate to support our children as their needs radically change and evolve through puberty.
I ask that cuts outlined in these bill amendments to ‘community participation’ and ‘capacity building’ (therapy) supports are not implemented in existing Plans or in re-assessed plans until all states advise that community supports and local community allied health is stepped up to support those aged 9-17 who may no longer qualify for NDIS; and the Inclusive Communities Funds are distributed across all LGAs.
Functional capacity and all treatments tested
The move to function capacity assessments does not allow for fluctuations in capacity that occur for participants particularly for Autistic people or people with less ‘visible’ disability.
There are days my daughter can’t complete basic self-care, brush hair, get dressed even with assistance to be able to leave the house while at other times she can attend school and other activities participating well.
How she functions varies on how the environment is adapted for her. She generally can’t adapt to different environments with ease herself. Unless a functional assessment is carried out in all environments - school, home, community it is not really a valid assessment of her functionality and unless it is done for an extended period, again it is not valid.
With young people a therapy works for a time and then may not be as effective as they grow. How can one test and rule out ALL therapies or treatments as is outlined in the Bill? We as a medium income family can’t afford to try everything before coming to the NDIS.
When my daughter entered the NDIS system, then aged 6, the paediatrician documented that the Medicare and community health systems were not adequate to support her. That her condition was life long and that she was going to need lifetime support. None of this statement has changed.
She constantly struggles to stay physically and socially abreast to her peers. She ironically is a shining example of how good early intervention works; however, she needs on-going monitoring and adjustments to keep growing to reach some future potential.
The NDIS support is the sole reason she has been able to stay in mainstream education. She is ineligible for specialist education settings, as she is considered too intelligent!
A way forward is needed which considers both diagnosis, functionality together. The Bills focus on Function, and one medical condition is not suitable or realistic.
We must consider the whole person. It is difficult in many people to define their disability back to one condition when they interact with each other. Is it the child’s genetic condition, ASD, ADHD, DCD or generalised anxiety, which 1 is the main cause of functional failure? Who can really tell or assess?
Automated plan creation - given what I have just said about multiple conditions I do have concerns that automated plans may lead to recipients having their needs miscalculated. The Bill also does not
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give appropriate ways for plans to be checked as well as they should be if automation is applied. This is a significant risk.
My children are disabled as confirmed by medical diagnoses.
No treatment will cure my children it is only therapy and social support that can assist to improve their functioning and help them experience a ‘close to normal life’ and ‘fit in’ with the expectations of society.
Self-management a cost saver
Self-management has enabled me to put a sound plan in place for my children’s supports with goals achieved.
Those parents/carers who have the capacity to self-manage smaller plans should be able to continue.
I have saved the government money in that I have self-managed capably, the cost of plan management has not been required so over an accumulated 9 years in the system this has been a saving, approx. $18,000
The Support coordination option was never granted in my children’s plans, despite my request, so another saving $4000 estimate.
If the minister will have authority to reduce funds across a category wholesale after a plan is agreed, as Per the Bill, this may render service agreements with registered providers made by self-managers made in good faith - null. Has this been considered?
Please retain self-management as part of the NDIS, most self-managers do the right thing and are responsible with government funds.
Lack of clarity and information for families with children aged 9-17
This Bill proposed cuts must be paused to enable the State Governments time to develop their Foundational supports.
The 9 to 17 age group has been totally missed in communications. They do not fall under Thriving kids. I’ve found limited public information on how this age cohort will be helped in a critical time of their personal development.
I’ve found very little public information available on Foundational supports and how these might be accessed. Just one main Fed Govt. webpage which focuses on Thriving Kids and similar vague information on Vic govt website.
What is to occur for my children through a transition either in or out of the NDIS is not covered in any Govt published information I can find. Yet plans to rapidly cut funding as outlined in these amendments are scheduled under this Bill before communication to families on availability and access to alternative supports.
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I also disagree with the clause in the Bill which allows a person to have their plan suspended if they can’t be contacted. I often don’t answer unknown numbers for privacy reasons. Participants should have clear communication pathways and messages left or emails sent requesting call back on a specific number if the NDIA wishes to contact them. This is not a reason to suspend a plan.
What is our family’s future?
I fear my 50s and 60s will be spent out of the workforce unwillingly home schooling two teens, who are intelligent, but will not cope with mainstream education who will likely fall between the cracks with the loss of their NDIS supports such as regular psychological support, OT and other allied health supports.
They need support workers who to help them navigate the world when parents can’t be on hand as their parents are out working for a taxable income. Without this support, either within the NDIS or Foundational Supports, our children will not participate in community life, I will not be able to work and pay tax, our overall quality of life will be negatively impacted.
I can accept our children will have less support in the future and that we may have lived through the golden age of disability support for which I’m very grateful, but we need your understanding that as taxpayers and community volunteers our family will be contributing less to the economy.
As an educated woman you will not have me contributing professionally to society in the future, if our disabled children are not supported and as a carer, I must pick up the load.
Please don’t allow the rushed implementation of this Bill to lead to a decline in our Children’s health while we wait for the State Government to provide alternative supports or limit our children’s potential or damage their future as employed taxpaying contributing members of society.
Please don’t ‘break the back of’ the carer community though the implementation of this Bill.
It is important to get things in order across ALL levels of government to assist those with a disability and their families. One level of government shouldn’t drop the disability support ball if another isn’t ready to catch it.
The NDIS should be about giving our people with a disability ‘a fair go’. It should be ‘enabling’ legislation not one with civil penalty points.
I feel much of this Bill isn’t in the ‘fair go’ AUSTRALIAN spirit.
Kind regards,
Redacted
Vic
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