Online video: NDIS planning for adults with severe autism/ASD in the ACT

Submitted by bobb on Wed, 15/10/2014 - 10:09

In this video Bob Buckley describes his recent experiences with National Disability Insurance Scheme (NDIS) planning. His advice tries to help others prepare for their transition to the NDIS. He suggests that people can reduce their stress over NDIS planning if they better understand the processes and likely outcomes.

Bob Buckley's son (who is 23yo with severe autism) has one of the earlier NDIS plans approved in the ACT. The process took 11 days and delivered substantially more support/resources than was previously provided. The plan is much more flexible than the previous arrangement.

Australia lags USA health sector on autism/ASD

Submitted by bobb on Wed, 1/10/2014 - 10:16

For children with autism/ASD, Australia lags far behind the USA. Australians like to think their health system is superior to the US health system ... but not so for the growing number of children diagnosed with ASD in Australia.

The US Government made it clear that US "states must cover all medically necessary services for children, including services to address ASD" (see 

WA study finds Autism sets back families $35,000 per year

Submitted by bobb on Mon, 15/9/2014 - 14:03

Families of children with autism are facing tens of thousands of dollars in costs and lost income, a Western Australian researcher has found.

The study — thought to be the first of its kind in WA — set out to measure whether a delayed diagnosis increased long-term costs for families.

But the paper, published in this month's edition of journal PLOS ONE, also established the median cost of a child being diagnosed with autism as $34,900 per annum.

Curtin professor and joint author Torbjorn Falkmer said the findings, drawn from the responses of 317 Western Australian families, had huge implications for parents.

"The majority of that cost, 90 per cent of it ... is because of the lack of the chance to have employment because parents have to stay home and take care of the children with autism, because they don't get the support they need," Dr Falkmer said.

"I think the system we have right now is showing us that parents are being forced to stay home, because they can't take a job because someone's got to take care of the kids.

Strapped in and locked up: Shocking photos reveal how autistic children are treated in Australian schools

Submitted by bobb on Mon, 8/9/2014 - 00:00
  • Tracey Hayes has photos of her twin boys strapped to chairs at Monash Special Developmental School in Melbourne
  • Other parents of autistic children have also made complaints about how their children have been treated in Victorian schools
  • Rebecca Cobb claims she was forced to pull her autistic son Tristan out of Marnebek school, in Cranbourne, because he was repeatedly locked in a small dark room

Submission to Review of Australia's Welfare

Submitted by bobb on Fri, 22/8/2014 - 10:05

front coverA4 submitted the report below to the Australian Government's Review of Australia’s Welfare System.

A4's report highlights that ... 

  • people with autism want to work and are capable of working. The problem is that employers, including governments in Australia, simply do not employ people with autism,
  • describing people with disability as "leaners", or as "rorters, bludgers, slackers, etc." does not improve employment outcomes,
  • growth in Disability Support Pensions is not even as big as growth in autism diagnoses ... so there is no real welfare crisis, but growth in the number of people diagnosed with autism deserves much more attention, and
  • Australia's welfare compared to GDP is below average for the OECD so Australia's welfare system is sustainable at present and is not heading towards being unsustainable, as the current Government claims.

Victoria's shame: Disabled children dumped at hospital

Submitted by bobb on Tue, 22/7/2014 - 15:02

Editorial: Shame, Minister, Shame.

The article below shows Victoria's Disability Services Minister, Mary Woolridge, will believe anything bureaucrats tell her but believes very little to do with realities of people with autism spectrum disorder.

Apparently, she is oblivious to her own NDIS schedule ... since she looks to the NDIS and ignores that her disability services outside the NDIS trial site are stagnant or in decline. Besides, people outside the NDIS trial sites still have years to wait for access to NDIS funced services and supports. Then there is the issue that the NDIS does not fund respite ... so the Minister's proposed solution for these people is misguided and uninformed. The value of such a Minister is extremely dubious. 

Services and support for people with autism spectrum disorder are especially poor because officials have very poor understandings of autism spectrum disorder. This story shows that senior health officials in Australia have no understanding of the clinical services the people with autism need to treat their chronic behaviours that are left untreated (even refused treatment) for years. They simply do not understand that respite is not treatment. It beggars belief that Victoria's senior health officials regard respite as the best treatment and rehabilitation for chronic behavioural challenges ... as the article below shows.

It is hard to believe that neither the hospital nor the union asked about respite. If they couldn't find a respite place, then the family had no chance. And DHS's "no wrong door" glib tag clearly failed on this occasion. The Minister is cruelly portraying this devastated family as naive nuisances. Shame Minister, shame!

NDIS ignores science on early intervention for children with autism

Submitted by bobb on Sun, 29/6/2014 - 11:34

The National Disability Insurance Agency (NDIA) is ignoring expert advice and existing government policy on early intervention for children with autism spectrum disorder (ASD). Instead, the NDIA adopted a generic and often inappropriate approach that does not address the distinct needs of children with ASD.

The Department of Health advised families* in 2006 that children with ASD need “best practice” intensive ASD-specific early intervention. Later, the Department of Social Security (formerly FaHCSIA) effectively asked ASD experts “are you sure … and what about just 'good' practice?”. The experts responded pretty much “Yep, we are sure … and 'good practice' isn't much different from 'best practice'” (links* to the report are here MS Word & PDF and the Guidelines for Good practice 2012 MS Word & PDF ... webpage here).

to Victorian Education official: "every word you wrote is inaccurate".

Submitted by bobb on Sun, 15/6/2014 - 15:39

A story headed Disabled children are left behind in the Bendigo Advertiser (see below) raised issues about how the education system in Victoria addresses the needs of children with ASD.

An official from the Victorian Education Department responded immediately (see below). Unfortunately, the officials's response was just wrong, as is far too often the case (e.g.

The response to the official's claims was immediate and "direct". Ms Kelly wrote to the Bendigo Advertiser and posted her letter on facebook (link here) where her message to the Bendigo Advertiser received significant support from families in her region.

In reference to Jeanette Nagorcka's not so well thought out letter/response in today's Bendigo Advertiser.

Ms Nagorcka

I have evidence and physical proof that every word you wrote in your letter titled Disabled Children article concerns is inaccurate. But at least you responded, unlike all of the letters and complaints that have been sent to you not only from this region but others including Geelong that you have chosen to dismiss.

Workforce issues relating to autism spectrum disorder, early intervention and the NDIS

Submitted by bobb on Mon, 9/6/2014 - 08:31


The latest NDIS Quarterly Report (up to 31/3/2014) [MS Word or PDF] shows that more NDIS participants (24%) have autism spectrum disorder (ASD) than any other distinct disability type. There was a sudden increase from the previous two quarterly reports that showed no NDIS participants with “autism” at all (previously, we assume the NDIS hid participants with ASD in other categories, such as “intellectual disability” or “neurological disorder”).

Australian Governments largely ignore the simple fact that generic disability services, often called specialist disability services, do not meet the disability service and support needs of people with ASD. The ABS reported the dire outcomes for people with ASD experience in Australia: see The consequences of neglecting their specific needs is that people with ASD experience abysmal outcomes in education, labour force participation and service access; people with ASD have appalling outcomes that are far worse than those reported for people with a disability generally.

Really? ACT Government report on ASD given "fail" grade

Submitted by bobb on Fri, 23/5/2014 - 11:36

A review of the ACT Government's latest report on services for people affected by autism spectrum disorder (ASD) gives the ACT Government a "fail".

Executive Summary

The Legislative Assembly asked the ACT Government to report on “support provided for autism diagnosis and services and the potential for further reforms”. The Minister presented the report to the Assembly in May 2013. Following numerous requests, the Minister gave a copy of the report to representative of people affected by autism spectrum disorder (ASD) on 23/4/2014. The Minister took 11 months to hand over a copy of the report to the ASD community in the ACT.

This review of that report finds that the ACT Government's information about ASD and the service and support needs of people affected by ASD is often incorrect. For example, the report under-estimates the number of Australian children diagnosed with ASD by an enormous factor of three (3).