Submission 1461
I write this submission as a tired, defeated and fearful mum of two autistic daughters aged three and five.
My eldest has been on the NDIS for the past six months, and these supports have been the lifeline we so desperately needed.
We are seeing so many improvements from the targeted therapy supports we have been able to choose for our child. These have enabled her to start at a mainstream school and finally participate in some community recreational activities alongside her peers.
Autistics are living in a world fundamentally not designed for them every time they leave the house. The NDIS supports my daughter receives are vital to her ability to exist and participate in this world.
However there is still so much work to be done now and into the future, as her capacity can fluctuate and being autistic is a permanent part of her identity.
I fear for her ability to learn, participate in school and reach her full potential if her NDIS supports are taken away.
I fear for the future of my three-year-old who we have not even started the NDIS process for due to the deep uncertainty around what it will look like for kids like mine. Why should she get less of a start than her sister?
Why should any child who comes after the vast number of autistic children who have benefited from NDIS supports get less opportunity than their predecessors?
The proposed changes to the NDIS are designed around numbers and bottom lines and not Australian’s genuine needs. This is a significant shift from the NDIS’ initial purpose.
Under the changes, my daughters would be not quite disabled enough for the NDIS, but not quite able to participate in mainstream education and activities without substantial support.
These kids will slip through the cracks. High masking girls especially, who often do already.
My daughters have so much potential and so much to give back to society. They matter.
Now to address just four aspects of the proposed amendments to the bill as time to submit is limited, as is my capacity.
- Increased expectation on parents: the additional support burden will disproportionately impact women
My daughter’s NDIS therapy supports are only two hours a week. Outside of that, I am my
Submission 1461
daughter’s mum, support worker, psychologist, OT and anything else an autistic child needs to regulate and exist in this world.
Placing more support burden on families, is–lets face it–placing more support burden on women.
I am a high-achieving, high school dux who made it to the top of her profession before having kids. I have aspirations of further study. I want to work and contribute.
But given the needs of my eldest child, her fluctuating capacity to attend school and the care I also provide to my three-year-old around her kindergarten days, there are not enough hours in the day for me to participate in meaningful work in my field, let alone have a social life or restorative solo time.
So how, given the current state of things, can I be expected to provide even more support?!
Proposed (and current) push backs on what is parental responsibility is so deeply offensive to autistic parents of autistic children.
I know that my eldest needs substantially more support than her peers. I see it when I’m still at school two hours after the bell rings, when every other parent dropped their kid off at the classroom door. I see it at the public pool, when parents are sitting fully clothed and scrolling on their phones while their child is in a class, while I’m in the water with my child who is unable to participate in classes. I see it at birthday parties, when she clings to me for the duration of the event and needs such intense support that I am unable to join the other parents who spend the party socialising while their kids run around and fend for themselves.
Any parent will admit parenting is a tough gig; parenting a neurodivergent child is another level of tough.
We do not need parenting education. We deeply understand our children and their needs. Most of us have lived experience of being autistic. We are parenting the way we wish we were parented.
Our child’s autism and their struggles is not a fault of this parenting, and is not something that can be “fixed” by some online course or manual.
We don’t need more education.
What we need is hands-on and tailored support to alleviate some of the burden and provide some respite, which in turn will help both us and our children to participate in and contribute more to society.
Submission 1461
Families will lose their choice of care supports that work for their child
Through much trial and error and waitlists, we have built a strong neuroaffirming support team for our child, funded by the NDSI. It would not be financially possible for us to have these supports for our child without her funding.
Prior to this, the mainstream system failed us. Multiple GPs and maternal child health nurses dismissed my concerns and that my daughter could be autistic, delaying her access to support. It was only after I sought my own diagnosis (at great effort and expense), that I was finally taken seriously.
Other mainstream “supports” have also failed us.
A Department of Education psychologist said I needed to “ignore my child more” for us to have shorter and more successful drop offs. Our own psychologist correctly identified that there had been a fracture in my child’s perception of school as a safe space, hence the reluctance to separate from a primary caregiver. This was able to be repaired with tailored support for my child, led by our NDIS-funded psychologist.
Taking the mainstream advice would have had detrimental impacts on my daughter’s ability to keep attending school, and therefore her access to learning.
I have grave concerns for what will be on offer for children like mine in mainstream settings under Thriving Kids, and without the tailored, neuroaffirming support she is able to access under the NDSI.
3. The Exhaustion Test: availability, affordability & suitability of supports
The proposed expectation that we exhaust all available options before applying to access the NDIS is not feasible for most families, and is unjust.
Our children are not guinea pigs.
We have repeatedly been told that early intervention is crucial, but are we now proposing a wait and see approach?
And that is if families can even afford or be able to access supports.
We thankfully live in a metropolitan area where, after the waitlist barrier, there are many supports available.
But even so, we would not be able to financially access them without the NDIS.
Submission 1461
So while the taxpayer may benefit in the short term from excluding children like mine from the NDIS, the losers are our children. Our children are our country’s future (and future taxpayers). Autistic children have just as much to give as their peers.
Ripping these funded individualised supports from under their feet and expecting parents to foot the bill gives our children far less opportunity and access to learn and succeed as their peers.
4. Permanence requirements are exclusionary for autistics
Autism is permanent. It is a neurodevelopmental part of our biology, as well as part of our identity. Despite tailored support, capacity to participate in society can fluctuate greatly day-to-day.
This amendment shows a deep misunderstanding of autism and how it impacts daily life.
The struggles may be hidden. They may be masked. They may not present as a visually-identifiable disability. But it does not mean that they are not there.
All the therapy supports in the world will not make me or my daughters less autistic.
But it is support, and that’s what our autistic children need to have a chance at thriving in this world.
Please don’t take it away.
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