NDIS policy (AAT Case Management Guide Applied Behavioural Analysis (ABA) - see below) fails some of the youngest and most severely autistic NDIS participants. Clinicians advise that some children with severe/profound or classic autism need intensive early intervention for their autism. NDIS policy (see below) says funding for the required early intervention depends on families winning a case against the government in the Administrative Appeals Tribunal (AAT).
There is history of evidence that many of these children (though not all) make substantial gains through such intervention. There are numerous research reviews that summarise research on early intervention for children diagnosed with "autism" under the DSM-IV (and DSM-IV-TR), including:
- Educating Children with Autism from the National Research Council (USA)
- Roberts et. al. series for the Australian Government - see https://a4.org.au/node/965 and http://a4.org.au/node/1191
- National Autism Center (2015). Findings and conclusions: National standards project, phase 2. Randolph, MA: Author
While intensive early intervention is considered expensive, the financial benefit across a lifetime is substantial. The current life-time cost of an Autistic NDIS Participant is around $7m so the breakeven point for early intervention that achieves at least average 10% cost reduction for an Autistic adult is $700,000 for early intervention. Early intervention for autism is not expensive when properly compared to the financial benefit; not to mention well-being benefits.
Since 2013, when the DSM-5 was published, research investigating the broader autism spectrum generally finds (unsurprisingly) that the needs of the broader post-2013 autism spectrum are different from the pre-2013 autistic population that did not include children with Asperger's Disorder or PDD-NOS.
Research suggests that moderately or less affected autistic children have different, but still crucial, support needs; and as yet those needs are insufficiently clear. Research has yet to indicate clearly what supports suit which less severely affected autistic children. What is clear is that describing averages for the whole autism spectrum is misleading.
The NDIS appears to have decided that there are no longer any children like the pre-2013 autistic children. The NDIS treats all autistic children like an average autistic child (with a DSM-5 diagnosis of autism spectrum disorder). But there are very few average autistic children; average is rare in the autism spectrum. The NDIS believes that somehow the publication of the DSM-5 eliminated classic autism and all the previous research relating to classic autism is now invalid or irrelevant. The NDIS's approach misunderstands the autism spectrum; it fails to recognise and respect that autistic individuals in different parts of the autism spectrum have different needs.
The NDIA created its policy that sends the most autistic children, those whom are advised they need intensive evidence-based early intervention, to argue their case in the Administrative Appeals Tribunal (AAT), a quasi-legal and adversarial setting. Most families are left to do this without legal or advocacy support. Unfairly, they are up against strong legal teams bringing the NDIA's case. The experience is often traumatising for the whole family.
However, there is evidence that most families are successful if they persist (see https://a4.org.au/node/2566).
Angela Cox (lawyer) discusses some of the issues in her article, Early Childhood Intervention: ‘Why won’t the NDIA fund an ABA program for my child with autism’, you ask? (Mar 2023)
This is a cruel and discriminatory NDIS policy that targets very vulnerable Autistic Australians. The NDIS needs to be better than this.
Autism researchers need to better explain the spectrum of needs across the autism spectrum. In the USA, there is a push to separate "profound autism" from the rest of "autism spectrum disorder". That is one proposed solution, but it may be overly simplistic. It is likely that there are better solutions. The NDIS seems to be needing them quickly.
The NDIS needs to better understand the full autism spectrum. It is unacceptable that after autism has emerged as the most numerous primary disability, the NDIA has yet to engage properly with the autism sector.
A4 wrote to Minister Shorten multiple times (see below) but he did not respond. No NDIS Minister since the start of the NDIS, has met with A4, the recognised/official Disability Representative Organisation (DRO) for autism, since the NDIS started. It seems government does not want to hear from the wider autism sector.
Since this article was originally posted, Minister Shorten met with Bob Buckley, A4 co-convenor, 6/2/2024. This was an historic occasion as it was the first meeting between A4 and an NDIS Minister since the start of the Scheme (in 2013).