I write about the promise that “that no one will be worse off under the NDIS” (see here). My particular concerns relate to autistic children and their access to impartial information and effective (best practice) early intervention.
I am writing to you because writing to the NDIA (see here, here, here and here for example) made no discernible difference (on these, or any other significant issue)
Thank you for your email of 6 October 2016 to the Chief Executive Officer of the National Disability Insurance Agency (the Agency), Mr David Bowen, about the Agency’s Early Childhood Early Intervention (ECEI) approach for autistic children. Mr Bowen has asked me to respond on his behalf. I apologise for the delay in responding.
The following is an brief exchange of emails between Bob Buckley and Andrew Barr MLA ... very soon before the 2016 ACT election.
This is an important matter for the whole nation, not just the Australian Capital Territory and South Australia.
Thank you for your very quick response. I hope you are right.
In South Australia, the NDIA stopped accepting new clients during their trial ... while we were told the scheme was meant to be uncapped, that turned out to be false.
Autism Aspergers Advocacy Australia (A4), the national grassroots advocacy group for autism spectrum disorder (ASD), is alarmed and disappointed by the National Disability Insurance Agency’s (NDIA’s) video on Facebook (see https://www.facebook.com/NDISAus/videos/594542027373310/ … a transcript is given below) about how its Early Childhood Early Intervention (ECEI) Approach is meant to work for autistic children. Disappointingly, this video shows that the NDIA continues to ignore/rejects expert advice and the peer reviewed research literature that defines best practice (and evidence-based) early intervention (EI) for autistic children (see http://a4.org.au/node/843).
The NDIA’s video features Michelle and her children (hopefully not their real names). While the following is critical of the video’s content, it is not intended to criticise Michelle who appears to be doing her best for her children. The NDIA is wholly responsible for the content of the video.
With the NDIS rolling out nationwide it is time for the NDIA and its parent policy agency, Dept. of Social Services to start making policy on a number of disability issues such as that of people with autism spectrum disorder and challenging behaviours such as aggression. These people are a large portion of your clients mainly in tier 3 and fall often into the too hard basket due to high support needs and very difficult behaviour. They are the clients most NGOs and other providers do not want as they are expensive and a hazard at times to staff and other clients. I have a son myself who at times falls into this group and am well aware of other “informal supports “doing it very tough with such adult or adolescent children usually males. ...
A report from the Australian National Audit Office (ANAO) said that in February 2014 the Department of Social Security (formerly FaHCSIA) funded $50,000 worth of research to establish "the extent of [ASD] over-diagnosis nationally".
A Deputy Secretary of DSS wrote back that
this wording is not intended to presuppose the findings of the Autism CRC report.
The Department apparently accepts (does not deny) their wording clearly pre-supposes the existence of autism over-diagnosis. However, the actual intent is now unknown. It is hard to imagine how a contract could be signed without anyone noticing this (unintended?) presupposition. A4 will be disappointed in the Autism CRC if it undertook research based on the questionable premise that parents/families and/or professionals are fabricating diagnoses of a medical condition. Credible research would not presume over-diagnosis exists; it would first need to establish that over-diagnosis really exists.
