Dear Committee,
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In regards to the inquiry to NDIS independent assessments.
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In regard to the NDIS and specifically exclusion of the neurodiverse for example ADHD/ ASD 1/ ODD/Sensory Processing disorders
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in regards to early intervention and what comes after it for Neurodiverse Children.
It is reprehensible that many children are not getting access to supports and therapies due to cost cutting exercises and inconsistent government policy, and definitions.
My child currently accesses Speech, OT and psychological therapies that cost over $400 per week and then some, many with long wait lists, and costs reflect NDIS funding. Without funding, children miss out.
This is not something any parent budgets for, to date we are still only partially funded, prior to 2018 however | funded his therapy at 100% and could only afford the minimums having to decide which was most important of what he needed.
However, when my child turns seven I’ve been told it will reduce to zero again as he will no longer be classed as early intervention and | was lucky to get anything in the first place.
There is an expectation that his current challenges will seek to become non existent at this point and he will no longer have a disability. Regardless of diagnosis, the life long condition he has to learn to manage, and recommendations of the medical professionals he engages with.
The system is lable based not needs based.
I’ve already been told by the NDIA to start planning to make my 5 year old more independent as his support will decrease next plan. Like | have a magic wand to wish away his disability. ie
School funding recognises his disabilities but does not cover this disability with funded support. In mainstream without support he is being set up to fail, like hundreds of other children, who end up with additional mental health challenges due to the inappropriateness of their treatment and lack of resources and education for staff.
He doesn’t qualify for special education units due to his intelligence.
The NCCD use examples of his challenges as a case study, but don’t fund it.
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No parent wants to see their child struggle and not be able to provide them with the support and resources to succeed.
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It’s breaking me apart with stress as to how to ensure my son has equal access and reasonable adjustments to opportunities that all kids should have, when the support he needs to attain this is only available to those with very very deep pockets or funded persons.
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It’s like with early intervention of your lucky enough to navigate the lucky dip to get funded we put the world in their hands and show them what they can accomplish with the correct resources…
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And then tell them because of your label, not your needs - you can’t afford it, sink or swim.
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I’m seriously wanting to make a representative complaint to the Human Rights Commission based on discrimination due to type of a disability.
15,000 parents have signed the attached petition. Please help us be considered too as our children are hurting.
Thank you for reading, be kind, be fair.