Minister's letter announces research into diagnostic practice for autism

Back in November 2013, Peter Hill wrote (see link below) to Senator Concetta Fierravanti-Wells, Parliamentary Secretary to the Minister for Social Services, asking about:

  • a meeting
  • the number of autism spectrum disorder (ASD) diagnoses (which are increasing significantly)
  • the cost of ASD to the community and steps that could/should be taken to minimise the burden on the community
  • education and labour force participation outcomes for people with autism are inequitable; they are much worse than for people with a disability generally.

Apparently, Senator the Honourable Ms Fierravanti-Wells passed the letter on to Senator the Honourable Mr Fifield, Assistant Minister for Social Services, who eventually responded on 30/4/2014 (see link below).

The Assistant Minister's response does not address:

  • Peter's request for a meeting
  • the issue of recognising the burden of ASD on our Australian community
  • the abysmal outcomes for people with ASD in education and labour force participation.

The Assistant Minister refuses to meet national ASD representatives; instead, he gets his advisers to meet representatives (who lack funds that they need to buy influence) so that communication about ASD is effectively via 'chinese whispers'.

The letter claims "The aim of the Government's investments in programmes for children with ASD ... is to ensure that these children have the best start possible to reach their full potential through access to early intervention". Yet the Government's "programs for children with ASD" deliver just a tiny fraction (about 1 hour per week) of the early intervention that the Government itself advises these children need (at least 20 hours per week - click here, here and here (PDF) to see the Government's research reviews and advice).

The Assistant Minister's response reminds us that the Government has funded an Autism CRC. Clearly this is welcome ... though the level of funding is quite small relative to estimates of the burden on the community due to ASD.

The most interesting aspect of the letter is that it announces a "research project to investigate diagnostic practices and the reliability of these practices in Australia" in relation to ASD. It seems the Government is skeptical about the substantial growth in autism/ASD diagnoses (which is an international phenomenon over more than two decades — for example see http://www.cdc.gov/ncbddd/autism/data.html). We will be very interested to see whether their project tells us any more than what we know from existing data (such as DSS/Centrelink and ABS data — see http://a4.org.au/a4/node/695 and http://a4.org.au/a4/node/622). If many of those diagnosed with ASD are not really disabled, then their outcomes in education (click here), in labour force participation (click here) and more generally (click here) would be much better. Recent data from the NDIS shows "autism" is one of "the largest disability groups" (see http://www.ndis.gov.au/quarterly-report-shows-participation-ndis-doubles...), despite the NDIS using functional assessment in deciding eligibility for its less severe clients. Apparently, the Government does not trust its own ability to regulate access to benefits, services and supports.

The Government is shutting down ASD-specific services such as the Autism Adviser service (in South Australia and the ACT) as it transitions its disability service and supports to the National Disability Insurance Scheme (NDIS). The Autism Advisers, an essential service for families whose child was recently diagnosed with ASD, were a part of the Commonwealth's Helping Children with Autism package that started in 2008. Families need immediate access to ASD-specific advice before they have access to NDIS funding, and often before their child has completed the extended diagnosis process for ASD. The NDIS does not provide this service ... the Government and the NDIS designers refuse to meet ASD representative to discuss the specific needs of people affected by ASD.

This correspondence does not mention several broken promises. Unfortunately, the Commonwealth Government broke its promises to fund:

  • a national autism/ASD register, and
  • a national peak body for autism spectrum disorder.
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PDF icon 20131115Letter2Senator.pdf40.8 KB
PDF icon 20140430ReplyMinister.pdf440.22 KB