Dear Committee Members
I write this submission anonymously in order to protect the privacy of myself and my family members. The purpose of my submission is to highlight various aspects of my family’s journey which are of direct relevance to points 2, 4 and 6 of the Terms of Reference.
Over a decade ago, my child was diagnosed as autistic, at approx. 2.5 years old. I have seen and experienced the legacy ‘helping children with autism’ package, the introduction of the NDIS and maturing of that scheme, and now the discussion of other support mechanisms. We have had experiences with a range of schools and other services in this period. I feel very qualified to offer my opinion and personal experience of the systems over that time, and to offer a view on the ‘Thriving Kids’ concept being discussed currently.
All Systems Fail, All Systems Require Backups. Thriving Kids Is No Exception
The NDIS has been described as the ‘only boat in the ocean’. This is a fair characterisation.
The challenge with a single ‘boat’, is twofold:
- Everyone tries to access the boat, even those it was perhaps not intended for
- If the boat sinks, there is no other option Much of the coverage of the NDIS has focussed on the first point. I wish to emphasise the second, which is far more pressing for scheme participants.
Systems fail. Regularly. Often this is not only due to lack of funding or structures, but also attitude and incentives. In our case, we experienced the following along our journey:
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There were threats to exclude my child from pre-school, at age 3-4, with a throwaway comment that they were ‘horrendous’ from the main educator. Let me be clear: there is never a good reason to exclude a 3-year-old (disabled or otherwise) from any learning environment.
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There was an insistence that my child begin kindergarten with partial attendance and with a clear reluctance to allow them to attend school for full days. Again, threats of exclusion were made for no clear reasons. Ultimately this became untenable and we withdrew them from that school.
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We then had an appalling experience at our local public high school, with the Principal all but telling us that our child would not be supported and that we were unwelcome. We contemplated a report under disability discrimination, but did not have the energy for that fight. We learned later that this is commonly experienced by parents of disabled children.
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Points 1, 2 and 3 above occurred in part because we disclosed upfront that our child was disabled and would likely require some accommodations. Our intent was to get them the help they needed, and to help the teachers do their jobs well. From the poor attitudes we experienced, it was clear why some parents refuse to disclose known diagnoses or seek diagnosis. Thriving Kids will need to tackle this cultural issue.
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Our first homeschooling period was challenging. We found there was a total lack of support for distance education and homeschooling in our state (NSW), with parents left to fend for themselves when the school system fails. Schools will not agree to distance education except in very rare situations, with Principals (with all the attitudes noted above) having excessive power to make life-changing decisions for families. Educational material existed which the education department refused to allow home schoolers to
access, so we had to find our own and develop syllabuses and learning material from scratch. We found that there is an underlying current of belief that ‘all kids should be in school’ within the school system and the education department, which fundamentally fails to recognise that many home schoolers are forced into it because of the failures of the school system. Primarily failures of attitude, of failing to be willing to include all children, not only of funding or resources.
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A later attempt at sending my child to another mainstream school appeared successful for a time. It later transpired that our child had received little in the way of education and had primarily been taken out of the classroom to play games in the yard with another disabled child, rather than receiving education. We were not informed of this. My child’s underlying dyslexia went unnoticed by their teacher for approx. 2 years, after which time we independently sought that assessment and received a diagnosis. They could barely read, at age 8-9.
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After notifying the school of the dyslexia diagnosis, the teacher was surprised. The vice- principal then outright refused to enrol my child in a reading support programme because it “takes too long and costs too much”. Apparently, my child finishing primary school unable to read was acceptable to her. Again, we withdrew my child and homeschooled, which we have ever since. They can now read, as a result of privately funded assistance which the school system and NDIS both failed to provide, despite dyslexia being a recognised disability.
The points above demonstrate a range of issues, but primarily a chronic problem of attitude within the education system. This will not be easy to fix. I suggest that disabled children will still be failed by schools, if some of the teachers and Principals in those schools do not wish for them to be there. Money and resources alone will not fix this.
However, I agree completely with the general idea that integrated supports will dramatically improve outcomes for many people. It should be pursued in earnest – indeed it should always have been pursued. There was never a good reason to separate supports from mainstream settings, or to categorise some necessary supports as being the responsibility of another department. The NDIS, for example, has long refused to offer support for anything it deems as being part of the education system – support for dyslexia, for example. By integrating supports into schools, this bizarre interdepartmental turf-war will become less of an issue, and we can start viewing people as a whole, not just through a departmental service-delivery lens.
However, this integrated system will still fail, at least some of the time. Tying supports to the school system, for example, will make children more vulnerable to the failures of that system, not less.
In my child’s case, the NDIS was still available to them (once it existed). This has meant a range of supports for them have been provided while we have been in periods of home schooling. Had those supports been tied to the school system itself, we would’ve had an unenviable ‘all or nothing’ decision to make. Schools cannot become the ‘only boat in the ocean’ for disability supports, when they already fail so many disabled people, and when kids are routinely excluded.
My proposal is simple. The NDIS should remain as the primary scheme for disabled Australians. The NDIS may choose to contract out services to schools and other community settings for provision in an integrated manner, which (when it works) will likely provide good outcomes, and may be more cost effective. This could replace direct funding in full or in part for many scheme
members. But when those systems fail - and they will – NDIS-funded services must still be available to support that person. When the school system causes a child trauma, or excludes them, or simply fails to educate them, parents should be able to withdraw their child without also losing access to crucial disability supports. With this arrangement, the NDIS will also have a direct financial incentive to ensure the success of the Thriving Kids scheme, rather than the alternative which would cause a saving to the NDIS if the school system fails and the child is withdrawn. Clearly this is not an incentive which should be in place.
While this is an anonymous submission, I will leave my details and I am available to discuss this privately, if the Committee wishes.