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 http://www.abs.gov.au/ausstats/abs@.nsf/mf/4428.0. 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.
Sadly, Governments get most of their advice about policy and services for ASD from people who lack the necessary specific knowledge and experience of appropriate services and supports for people with ASD. Contrast A4's review of recent advice to the ACT Government (see http://a4.org.au/a4/node/824) to the ASD community's response, through the 1000 hours campaign, to the Commonwealth Government report and advice, from people with actual expertise, on best practice early intervention for children with ASD (see the report and guidelines). Apparently the Government became uncomfortable about the content of the original research review (which is consistent with expert reviews from overseas), so they effectively asked “did you mean all that … and what about 'good' rather than 'best' practice early intervention?”. The revisions (see the review [MS Word or PDF], guidelines [MS Word or PDF] and list of approaches [MS Word or PDF] – links on this webpage) basically says “Yep, we meant it alright … and even downgrading to 'good practice' still means intense individual and ASD-specific”. Governments in Australia have not heeded the advice that they got from professionals with expertise in ASD. Professionals like those advising the NDIS or the ACT Government are meant to only give advice where they have specific knowledge of the subject; but unprofessional conduct is prolific around ASD advice to Government.
The following describes some key features of ASD, the need for and nature of an ASD-ready workforce particularly in relation to effective early intervention, the required training and resource development.
Background on Autism Spectrum Disorder
The DSM-5 describes ASD (see http://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria):
“Persistent deficits in social communication and social interaction”, and
“Restricted, repetitive patterns of behavior, interests, or activities”.
For the purpose of this discussion, ASD is “disorder” in the clinical sense; “autism” is only about dysfunction at the clinical level, social and communication deficits and behavioural dysfunction that need clinical treatment and rehabilitation if possible. And if a person doesn't get the treatment they need (as is usually the case in Australia) or a person's disorder does not respond to treatment, then the person needs appropriate services and supports that often involve aspects specific to ASD. Usually, a person with ASD cannot access or does not get the services and supports that he/she needs, as is shown in http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/4428.0main+features102009.
Best practice or even good practice for people with ASD delivers significantly better outcomes than are currently realised in Australia. Good practice for ASD is early diagnosis, specific early intervention, effective and appropriate education, effective employment options and flexible services and support in adult life.
In Australia, professional staff in the disability sector do not show that they know what people with ASD need. If they did those professionals would inform their managers that the needs of people with ASD are not being met. That is just professional conduct.
Responsibility does not rest solely on allied health professionals. Managers and administrators in the disability sector should recognise when clients under their supervision are not having their treatment and support needs met. This clearly is not happening because failure to meet needs is not usually reported.
Management and administrative expertise in the disability sector needs far greater sensitivity and awareness of the needs of people with ASD.
ASD is usually described as life-long; many people diagnosed with ASD as a child will still meet diagnostic criteria for ASD through their adult life. There is evidence that best practice early intervention for ASD delivers substantially improved outcomes for most children, enough improvement that some children lose their ASD diagnosis though they usually retain some similar traits to people who are diagnosed with ASD.
Effective treatment, rehabilitation, education and disability support for ASD addresses a combination of social issues, communication deficits and behaviour dysfunction. Some regard behaviour as central since better outcomes for a person with ASD comes from improved or effectively supported social behaviour and communication behaviour.
The internationally recognised standard and qualifications for behavioural clinicians are described on the Behavior Analyst Certification Board website – see http://www.bacb.com/. Embarrassingly, no Australian university trains people to the recognised standard. New Zealand has two universities training professionals to the required standard. The few certified behaviour analysts in Australia (go to the webpage http://www.bacb.com/index.php?page=100155 then choose “Australia” under “International” and click “search”) were trained overseas.
Australia lacks the behavioural professionals that it needs to support people with ASD in their family, in education, employment, supported accommodation, mainstream services and in the community. This is the reason that some adults with ASD need extremely expensive support packages, in extreme cases up to $500,000 per annum, for extended periods.
Early Intervention for ASD
Much of the focus on ASD is about early intervention. The evidence is clear that investing in early intervention for ASD is financially responsible: the cost benefit is enormous. Early intervention does not cure ASD, though some children lose their diagnosis. Early intervention improves social, communication and behaviour skills; in turn this improves education outcomes, employment, general functioning and independence.
There is scope for debate about whether early intervention for autism is “treatment and rehabilitation” or a necessary pre-requisite for effective “education”. But it does not matter; either case is subject to Article 23 in the United Nations Convention on the Rights of the Child that says, which ever you decide it is, it should be free and the state is responsible.
Before the Government created its Helping Children with Autism (HCWA) package, it commissioned an expert review of best practice for autism (see link – a revised review is available here). As a result, the Government advises that best practice early intervention for ASD requires 20 hours per week (about 1000 hours per year) of intensive (often one-on-one in the beginning), individualised ASD-specific early intervention for at least 2 years (see http://www.health.gov.au/internet/main/publishing.nsf/Content/19A99E0084110A31CA257BF0001E74DB/$File/autbro.pdf). The review results are similar to reviews from experts overseas (for example, from USA generally, California, Ontario Canada and many more).
A list of the early intervention services that were available pre-HCWA is available at http://www.health.gov.au/internet/publications/publishing.nsf/Content/mental-child-autrev-toc~mental-child-autrev-sur~mental-child-autrev-sur-t6. It shows that parents fund most programs that offer at least 20 hours per week … sometimes requiring parent fund-raising in the community. These data do not show whether programs provide best practice early intervention, such as having necessary levels of one-on-one program to ensure individuals each reach their potential. Nor are there useful measures of efficacy for programs. The main result is that national outcomes in education, the flow on from early intervention, for people with ASD are abysmal as is shown from the ABS SDAC 2009.
The Government increased funding for autism early intervention through its HCWA package in 2008. The implementation of HCWA showed that complex disability service schemes can be rolled out quite quickly when effective consultation and engagement with stakeholders occurs, even when funding is manifestly inadequate … as is consistently the case in the disability sector.
In addition to the Howard Government's HCWA package (that Bill Shorten implemented after the 2007 federal election), the Labor Government also created its Autism Specific Early Learning and Care Centres (ASELCC) scheme. (Note, there are six of these with one in each state but none in the territories. The National Disability Strategy 2010-2020 (see link) lies about how many there are … it says there are eight of them. Also, when the ACT Liberals promised it would replicate this Labor initiative in the ACT election, ACT Labor criticised the proposal). The ASELCC scheme is a postcode lottery for a few children to access nationally funded early intervention for ASD.
As yet, these schemes lack effective evaluation and/or outcome monitoring. While the ABS collected SDAC relevant data in 2012, it has not reported on autism outcomes as it did for its 2009 data.
Training allied health professionals for ASD
Apparently, few people in Australia recognise that delivering best practice for ASD, that is 20 hours per week of best practice early intervention for ASD over 2 years, requires highly skilled staff to design and supervise delivery of the individual programs for each child. The skills required cannot be taught in the hour or so lecture on ASD that allied health graduates typically get in their bachelor’s degree (we have a recent admission from a lecturer who told students in a top Australian university that autism prevalence is 4 per 10,000 because that's what the DSM-IV, published in 1994, said; why would a student be interested in autism if there are so few potential clients and little work prospects). Few allied health graduates, and few of their teachers/lecturers/instructors, have ever even seen best practice early intervention for autism being delivered in ernest. They do not have the knowledge and skill that the Government and existing systems in Australia expects/demands of them. Many families learn more about best practice early intervention for ASD within 6 months of their child's diagnosis than the allied health professionals learn in their whole degree: this creates some pretty negative or disrespectful situations for families and the services they have access to.
The leading role in delivering best practice early intervention for ASD requires far more than knowing what to with a child with ASD do face-to-face: it requires skill in
recruiting appropriate support workers,
training and supervising support workers to deliver face-to-face intervention,
monitoring and revising individual programs, and
working with families.
Existing tertiary education course do not provide effective training in best practice for children with ASD. The Government and its advisers need to understand that without properly trained staff to deliver early intervention programs like the Commonwealth’s Helping Children with Autism (HCWA) package and Inclusion Support Supplement (ISS) scheme are seriously sub-optimal; they actually inhibit or prevent delivery of best practice for children with ASD.
The Government's HCWA model funds up to one hour per week of “early intervention” (therapy?) from clinicians, with services delivered preferably face-to-face. With this HCWA model, a child with ASD gets less than 5% of the early intervention that the Government advises she/he needs. There isn't much benefit to the child, but it makes families feel better that they get some service. It would be far more efficient and effective to fund clinicians to train and supervise junior staff who deliver individual early intervention programs face-to-face; and to review of children’s programs and monitor progress.
The ISS scheme is designed to be unsuitable for most children with ASD. The ISS scheme assumes incorrectly that children with a disability, including children with ASD, already have the skills that they need for inclusion in mainstream settings to be practical. But few children with ASD have these skills so few children with ASD access or benefit from the ISS scheme.
Children with ASD need best practice early intervention to prepare them for mainstream settings. Government policy omits (denies) access to the initial early intervention that children with ASD need to prepare them for supported inclusion in mainstream settings (ISS) or learning in naturalistic settings (as espoused by the NDIS, see http://www.ndis.gov.au/document/540).
The Government could ensure children with ASD can access the same level of support that ISS offers to deliver early intervention under HCWA funded supervision. But the Government uses massive barriers based on political ideology and bureaucratic dogma to prevent success for children with ASD.
This is fiscally irresponsible. A series of reports (see http://www.synergies.com.au/home/inner.asp?pageId=119) describe conservative estimates of the massive cost to the community of the Government's lawful disability discrimination against children with ASD.
Since the allied health sector lacks appropriate training and the Government does not support best practice early intervention for ASD, most Australian trained allied health professionals try to help children with ASD the best they can. Many don't know what is best; others believe that the best they can do is train families to use their personal resources to deliver early intervention for ASD. But this approach is not supported by evidence. The allied health professionals do not understand or they misrepresent the peer-reviewed research. Programs that train parents to deliver early intervention are not current best practice for ASD (see http://summaries.cochrane.org/CD009774/early-intervention-delivered-by-parents-for-young-children-with-autism-spectrum-disorders) as reviews of the research report that with parent delivered early intervention “important outcomes such as other aspects of children’s language, children’s adaptive skills and parent stress did not show change”.
Australia needs its universities to train allied health professionals who can deliver best practice early intervention for children with ASD in sufficient numbers to meet the needs of children being diagnosed with ASD.
There is a real “chicken and egg” challenge here. There is little point to training graduates in best practice for ASD when the only places for them to work is where a few of Australia's most wealthy can afford them.
The Australian Government must commit to funding best practice early intervention for children with ASD; continued failure/refusal to do so is major fiscal irresponsibility.
In the event that the NDIA decides that it wants a workforce trained to deliver best practice early intervention for children with ASD, we are happy to discuss practical ways to achieve this.
Past experience, including experience with the HCWA roll-out, proves that notions of a “free market” in services and support for people with ASD is a total myth. The scale of the challenge is beyond what the private sector can accommodate without guidance and support. In June 2013, there were 58,018 children aged 0 to 15 years inclusive who were diagnosed with Autistic or Asperger's disorder … and an allied health professional regarded the child's disability meant the family needed additional support via Carer Allowance. Of these 4,386 were 15 years of age. In July 2004, there were 14,384 children with Autistic and Asperger's disorders. The number of children increased by 403% over 9 years. The average annual growth is 16.75%.
These numbers are similar to the number of people with severe or profound due to their autism reported in the Australian Bureau of Statistics Survey of Disability, Ageing and Carers. A similar rates are also observed in the age range 0-7 years among clients of the Helping Children with Autism package.
Be warned that internal Government information and advice about autism, especially about ASD prevalence, can be erroneous. For example, the Health Department said incorrectly that “The Department is not aware of any evidence of any major shifts in prevalence of autism in Australia” (see this link). And the ACT Government misinformed the ACT Legislative Assembly about autism; its estimate is a massive three times less than the actual number. The ACT Government told the ACT Legislative Assembly that growth in disability numbers was inline with population growth but omitted in its report about autism that growth in ASD numbers is much higher (despite ASD growth in the ACT being the lowest in Australia).
We can estimate that at least 8,500 children should be in early intervention at present. One ASD early intervention specialist can manage individual programs for around 20 children at a time.
Nationally, Australia needs at least 425 specialists to supervise children's early intervention programs at current ASD diagnosis rates.
Early intervention programs need close to one-on-one delivery. Early intervention for 8,500 children needs about 4,250 FTE support workers.
While the number of children grow at a rate of 16.75% per year, the number of professionals and support workers needs to grow at the same rate.
The above estimates do not include all the resources needed to support people with ASD. The scale of a workforce to provide services and supports for older children and adults is more challenging to estimate.
Few Australian children with ASD can access early intervention that experts both here and overseas describe as best practice for ASD. Instead of best practice, or even good practice, most Australian children with ASD are included in mainstream settings without appropriate preparation … and the evidence clearly shows most of them fail in those settings, the outcome is abysmal.
Existing Government policy and practice for children with ASD does not make sense. The NDIS needs better policy and practices to improve outcomes for people with ASD.
Australian Governments that continue trying the same thing, that is placing children with ASD in inclusive education without effective early intervention, and expecting a different outcome, that is improved or even equitable outcomes for children with ASD, must be judged on their actions.
Governments in Australia also need to recognise and properly address the Australians with ASD who missed out on even good practice early intervention, whose did not benefit from the education settings they were placed in and still need substantial ASD-specific services and support.
It is reasonable and necessary that Governments recognise ASD is a distinct disability.
Which means people with ASD often have distinct ASD-related needs. Those needs should be met through the NDIS, through the education systems, effective employment services for people with ASD and through disability services and supports that meet the needs of people with ASD.
As yet, the workforce does not exist to meet the needs of Australian with ASD. Nor will such a workforce simple emerge.
About the author: through the 1990s, Bob Buckley and David Gilks lead Infuse Pty Ltd, a top 10 consultancy for the Australian Defence Force working mostly in workforce planning and industrial relations. At the time, Infuse advised Government that it should develop workforce plans for the Health and Education sectors. Unfortunately, Government did not heed the advice.
Bob is long-time volunteer advocate for people affected by ASD. He was a finalist for Senior Australian of the Year 2014 in the ACT. He is Convenor of Autism Aspergers Advocacy Australia (A4) and Chair of Speaking Out for ASD in the ACT (SOfASD). He served extensively as Vice-President for Autism Asperger ACT (AAACT) and as a director of the Australian Advisory Board on ASD (AABASD). He had a major role in transforming AAACT from a family mutual support group to a service provider. He wrote the Annex on individual advocacy in the Australian Autism Handbook and presented on various subjects, mostly the prevalence of ASD diagnoses in Australia, at key autism conferences in Australia.