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Submission SUB-Z9W7-002043 (Anonymous)

Submission reference
Submission type
10 areas for improvement
What is the best way to support children with disability… and those with emerging developmental concerns?

I have 5 year-old twin girls who were diagnosed with global developmental delay aged 3, after we took them to a paediatrician because of speech delays when they were 2. One has now been diagnosed with ASD. My suggestions:

1. Prior to school age, introduce evidence-based guidelines outlining the most effective intervention for children with various disabilities/delays and the suggested frequency. Instead, we are given are pot of money (more than we can possibly spend based on our schedule) and have to fly blind as we navigate a system full of service providers with long waiting lists and questionable motives (e.g., different prices for NDIS and non-NDIS clients and a general belief, likely bullshit, that all intervention is helpful). Standard guidelines would help parents spot the charlatans and help reduce the cost of the program. At the moment, the waitlists probably mean that many kids are getting more therapy than they need, while others can't get therapy at all. I'd hate to know what it's like for a first nations or migrant parent.

2. Once children are at school age, do everything possible to have the support delivered in schools by the schools. I recognise that this will require federal-state cooperation that I have no confidence our politicians are capable of, but the current set up is unworkable for students with disabilities and their parents. My kids have an education assistant who splits her time between them during the school week - this is funded by the WA State Government. With NDIS, I'm not allowed to allocate my children's funding to the school to employ another EA, but can spend it on a raft of service providers who deliver dubious benefits. How on earth is this sensible?

3. For those children who don't have NDIS but need support, the same principle applies - deliver it in schools. I'm sure the NDIS's actuaries can work out how many children a school can expect to see with autism or other developmental problems. You then fund the necessary number of speech pathologists, occupational therapists, and physios with the money saved from the individual plans that my children have (I've no doubt there'll be a lot of money left over due to the benefits of scale).

Is there anything else that you would like to tell the NDIS Review?

I'm commenting as a frustrated parent (and taxpayer) who wants the system to work better than it is. I live in Perth and have at times become disillusioned by the shameless greed and incompetence shown by service providers. They're belief that all intervention is helpful is cult-like. I suspect it's because they 'treat' a lot kids who improve in spite of the intervention they didn't really need.