A range of initiatives are needed to address autism in Australia, the cost of which to the budget has been put at at least $20 billion a year.
The recent case of an autistic child being sent to a purpose-built cage in a classroom caused international outrage, but teachers are ill-prepared to access professional support when a student needs it, Bob Buckley writes.
The recent case of an Australian child with autism spectrum disorder (ASD) being sent to a purpose-built cage in a school classroom caused international outrage. It highlights the risk of autistic children learning challenging behaviours, and that teachers and staff are not trained to access professional behaviour support when a student needs it.
Evidence suggests that the number of people diagnosed with ASD is increasing quickly, and it has done for several decades. This deserves serious attention.
In 1988, when the movie, Rainman, was released Autism diagnoses were rare (up to 1 in 1000). More recently, the US Centre for Disease Control estimated 1 in 68 school-age children in the USA were diagnosed with ASD in 2010.
Data from the Australian Bureau of Statistics and from Centrelink (Carer Allowance – child recipients) show substantial increases. Around 1 in 62.5 Australian children were diagnosed with ASD in 2012.
While the Department of Health and Ageing says it is “not aware of any evidence of any major shifts in prevalence of autism in Australia it is now the biggest primary disability in the National Disability Insurance Scheme (NDIS) trial, even though the NDIA’s eligibility criteria for ASD are gobbledygook.
Apparently, the NDIA expected much smaller numbers than are observed, although estimated numbers for the Government’s previous Helping Children with Autism package had been surprisingly accurate.
Relatively little is known about the economic cost of autism in Australia. A revised report in 2011 estimated conservatively that autism in Australia costs at least $8.1 billion per year. A more recent rough estimate suggests autism costs the Australian Budget at least $20 billion per year. Research says a child with ASD means an average $35K per year decrease in family income, due to the at-home care such a child will require from family.
Policy could also move to workplace inclusion. While a valid ASD diagnosis recognises support needs, the community must also recognise that every person with ASD has valuable (and mostly under-utilised) skills and abilities. With the right support and accommodations, all autistic people can contribute substantial value to their community and to the economy. For example, The Dandelion Project is part of an international effort to create one million jobs for people with ASD in the IT sector.
As things currently stand, education, employment and accommodation outcomes for autistic people are abysmal. Australia has shocking poverty of people with disability; with poor education and employment outcomes, it’s very likely that autistic people are represented strongly in these statistics. Even with the coming National Disability Insurance Scheme (NDIS), limited access to professional behaviour supports for autistic people remains a major service deficit. People cannot access services that do not yet exist.
In the education sector, governments and education administrations expect/require teachers with little or no clinical/professional training in behaviour management to develop and deliver clinical-level behaviour management plans for autistic students who have already progressed to having severe or profound behavioural challenges.
Typically, teachers are trained to not access other professional services. Teachers are expected to be self-sufficient and to rule their classroom. Teachers are not advised/taught that trying to deliver clinical (or disability) services that they are untrained in is seriously unprofessional conduct. For example, they are not expected to do surgery or dentistry, so why does their employer expect them to manage clinical level behavioural issues?
Without the necessary behaviour supports, the systems often fails autistic people. Bad outcomes are unnecessary and can always be avoided. Australia’s Department of Social Services (DSS) documents that behavioural methods are the only evidence-based early intervention for autism that it rates as “based on established research evidence”, but then both DSS and the NDIS mostly fund multi- and trans-disciplinary teams that do not even include/involve a behavioural clinician.
Few autistic students have professionally supervised behaviour management plans. Service providers in the post-school sector often cannot offer service for many autistic people with severe or profound disability because their service cannot deliver appropriate behaviour management.
Mostly, people with ASD don’t have professional behaviour support because Australians have little regard for behaviour science. For example, in 2010, the ACT Government said “We do not actually use the ABA intervention method”.
There are risks with any clinical practice. Behaviour science is no exception. People who have experienced or seen poor/bad and/or unethical practices done in the name of behaviour management are right to be wary. Their concerns must be respected. The best protections against wrong-doing are strong regulation, professional training, independent performance monitoring and review, and an active and engaged community of practice.
For decades the Australian Psychology Society has failed to recognise and administer behaviour science practice locally. Federal, state and territory governments should, as a priority, adopt and promote registration and training through the international Behavior Analyst Certification Board.
Australia has to catch up; it has no universities offering this training while our smaller neighbour, New Zealand, has two. There are thousands of international positions advertised, but none in Australia.
Policies, effort and resources are needed to establish and promote the strong sector and community of practice required to address the behavioural needs of autistic Australians and to improve outcomes for autistic people and others who need behavioural support at a clinical level.
This piece was also published by Policy Forum.net, the website of the Asia and the Pacific Policy Society based at ANU Crawford School.
originally from https://www.policyforum.net/policy-needs-of-autistic-australians-must-be-met/ also published in Fairfax papers: https://www.canberratimes.com.au/comment/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark, https://www.brisbanetimes.com.au/comment/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark, https://www.theage.com.au/comment/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark, https://www.watoday.com.au/comment/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark and https://www.smh.com.au/comment/behavioural-needs-of-autistic-australians-must-be-met-20151023-gkhark
... note, the document below (from Florida in the USA, link here) shows some of the challenges associated with meeting the communication and behaviour needs of autistic students in schools. And here an Australian example of the current difficulty meeting more severe behavioural needs ...
Destructive client highlights problem
By IAN KIRKWOOD, 23/10/2015
SPECIALIST disability staff from the Stockton Centre and Morisset's Kanangra unit flew on an urgent mission to Albury this week after a charity there was unable to cope with an "uncontrollable" young man in its care.
Sources told the Newcastle Herald that the young man with "challenging behaviour" had "destroyed" up to three group homes.
They said three staff from Kanangra and two from Morisset had flown to Albury to deal with the situation.
A spokesman for the Albury organisation involved, Aspire Support Services, confirmed there had been a problem but said the man was no longer in its care.
The Herald was alerted to the situation by disability workers who said the young man and others like him should never have been put into privately run group homes in the first place.
They say things will get progressively worse if the state government proceeds with its plan to privatise its disability services as part of the National Disability Insurance Scheme.
They say the privatisation, combined with the government's plan to shut Stockton and Kanangra by 2018, means there will be no carer of last resort for anyone that the private sector is unable or unwilling to care for.
Public Service Association organiser Paul James said staff were concerned about the way these sorts of situations were playing out, believing the clients were being "let down".
The Herald reported in January that a person with "behavioural" issues had been moved from Albury to Stockton, but sources say this latest situation involves someone else.
That person had been brought to Stockton despite a long-standing government policy of no new admissions, but the government said at the time that it was a "time-limited ... therapeutical placement".
A state government spokesperson said a young man was being cared for in Albury "in collaboration with" non-government agencies. He said the non-government sector had a proven ability to support people with complex needs.
Once the NDIS was in full swing, the federal National Disability Insurance Agency would be responsible for "finding alternative solutions for people".
THE Stockton Centre is open to the all on Saturday for the 57th annual Stockton Fete.
Stockton Welfare Association spokesperson Wendy Cuneo said the fete will start at 9.30am finish about 2.30pm. It will have raffles – one with a $1000 first prize – cake displays, a chocolate wheel, motorbikes, vintage cars, a martial arts display, banjo players and an outdoor market.
‘‘Traditionally the fete stalls have been run by volunteers selling donated goods but for the first time in 57years, outside traders are invited to attend,’’ Mrs Cuneo said.
‘‘We raised $25,000 last year and the money is spent on various things for the residents of Stockton, Tomaree and Kanangra centres.
‘‘They are people with severe intellectual and physical disabilities who require 24-hour nursing care and the money we raise helps lift their quality of life.’’