15 July 2020
The Committee Secretariat
Autism Select Committee
Department of the Senate
PO Box 6100
Parliament House
CANBERRA ACT 2600
Dear Committee Chair
Please find attached our response to the Select Committee inquiry into and report on the services, support, and life outcomes for Australians with autism; and the associated need for a National Autism Strategy.
As a Disability Representative Organisation supporting 300 members and a peak body representing some 73 Australian Service Providers, we are most interested in speaking at the Select Hearing.
Yours sincerely
AUTISM BEHAVIOURAL INTERVENTION ASSOCIATION
Susie Pavey Dr Erin Leif BCBA
CHIEF EXECUTIVE OFFICER VICE PRESIDENT
Part A – Terms of Reference
Item b - the prevalence of autism in Australia. The issue to be addressed here is the lack of availability of clear and accurate data. There is currently no one national body charged with collecting or tallying autism diagnoses. We believe this is a gap. The information is needed for the country, the disability sector, the ABA sector, and organisations such as ours.
We currently rely on ABS figures which are out of date. Many autism organisations draw on USA figures as a guide, or draw from NDIS participant data. While we know that autism is on the rise, clear and accurate data on number, age, severity of diagnosis etc, is an enabler for defining solutions and catering to funding need.
We ask that the government establish national autism reporting requirements. We further ask that
the government designate one body or organisation with responsibility for the collection,
manipulation, and dissemination of such data.
Item d - international best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity. Applied Behaviour Analysis (ABA) is not simply one ‘treatment for autism.’ Rather, it is a framework for delivery of a variety of evidence-based interventions and supports. As a framework, ABA includes:
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an objective assessment and analysis of the client’s condition by observing how the environment affects the client’s behaviour, as evidenced through appropriate data collection;
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importance given to understanding the context of the behaviour and the behaviour’s value to the individual, the family, and the community;
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utilisation of a variety of evidence-based teaching and behaviour support strategies such that the client’s health, independence, and quality of life are improved; and
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consistent, ongoing, objective assessment and data analysis to inform clinical decision-making. (Adapted from the Behaviour Analyst Certification Board (2014). Applied behaviour analysis treatment of autism spectrum disorder: Practice guidelines for healthcare funders and managers. Retrieved from http://bacb.com/asd-practice-document/)
The graphic on the next page illustrates the process of ABA:
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Assess – What
are the Client’s
Strengths, Needs
and Skill Deficits?
Gather
Analyze Data to Information
Make Teaching
About the Client’s
Decisions and
Long Term Goals
Program Changes
The Iterative and Aspirations
Process of
Applied
Behaviour
Analysis
Create Specific
Measurable
Collect Data on Learning
Client Progress
Objectives, in and Outcomes
Collaboration
with the Client
Create
Individualised,
Active Learning
Opportunities
using Evidence
Based Strategies
The process of Evidence-Based Practice (EPB) is illustrated in the ABA framework. EPB is essentially a decision-making process. It helps us select interventions with strong research support, and then use our clinical judgement to individualise interventions for clients based on variables such as culture, setting, client preferences and values.
EBP relies on the use of empirically-supported treatments. An empirically-supported treatment is an intervention that has been shown through research to be effective with a given population. The following specific interventions and supports for autism have been demonstrated to be effective and summarised in comprehensive research reviews conducted by the National Autism Center (NAC) and the National Professional Development Center on Autism Spectrum Disorders (Autism PDC):
Antecedent-Based Interventions (NAC; Exercise (Autism PDC)
Autism PDC) Extinction (Autism PDC)
Behavioural Interventions (NAC) Functional Behaviour Assessment (Autism
Cognitive Behavioural Intervention PDC)
Package (NAC; Autism PDC) Functional Communication Training
Comprehensive Behavioural Treatment for (Autism PDC)
Young Children (NAC) Joint Attention Intervention (NAC)
Differential Reinforcement (Autism PDC) Language Training (NAC)
Discrete Trial Teaching (Autism PDC) Modelling (NAC; Autism PDC)
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Naturalistic Teaching Strategies/Incidental Scripts (Autism PDC)
Teaching (NAC; Autism PDC) Schedules (NAC)
Parent Mediated Interventions (Autism Self-Management (NAC; Autism PDC)
PDC) Social Narratives (Autism PDC)
Peer Mediated Interventions (NAC; Social Skills Training (Autism PDC)
Autism PDC) Story-based Intervention Package (NAC)
Pivotal Response Treatment (NAC; Autism Structured Playgroups (Autism PDC)
PDC) Task Analysis (Autism PDC)
Positive Behaviour Support (RCN) Technology-Aided Instruction and
Prompting (Autism PDC) Intervention (Autism PDC)
Reinforcement (Autism PDC) Time Delay (Autism PDC)
Response Interruption and Redirection Video Modelling (Autism PDC)
(Autism PDC) Visual Supports (Autism PDC)
Being able to identify empirically-supported treatments is an important component of EBP (these are treatments that have been shown to be effective in published studies). But we should not take descriptions of interventions off the pages of journal articles, and apply them with our clients in the same way. We must individualise interventions for clients. They specific way in which we individualise an intervention for a client will be influenced by our own clinical judgement, and by client- and setting specific factors.
Once an empirically-supported teaching tactic or treatment is identified and individualised for the client, the clinician is responsible for the ongoing collection and review of data to inform decision-making
about the intervention effectiveness. This process is illustrated below. Ongoing evaluation of
intervention effects should feedback to program design. If the data show that the intervention is effective, you know you can continue. If no change in behaviour shows following the introduction of the intervention, you should review and modify the intervention (ie go back to the design phase). Once the intervention has been modified and implemented, it should continue to be evaluated. This cycle of design, implement, evaluate will ensure that effective interventions are provided to clients, and maximal progress toward goals is achieved.
(From Brodhead, M. T., Cox, D. J., & Quigley, S. P. (2018). Practical ethics for effective treatment of autism spectrum disorder. Academic Press.)
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As illustrated above, ABA is not a single type of intervention for autism. Rather, it is a branch of science concerned with the application of basic principles of behaviour and learning to solve socially important problems. When we advocate for ABA for people with autism, we are not advocating for a single type of intervention or support. Rather, we are advocating for a framework that is objective, transparent, person-centred, and accountable.
We can more formally define the professional practice of ABA for autism as the provision of services and supports that include a number of essential practice elements (indicated below).
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Comprehensive assessment that describes specific levels of behaviour at baseline and informs subsequent establishment of learning goals, which are developed in partnership with the client and the client’s family or significant others.
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An emphasis on understanding the current and future value (or social importance) of the skills and behaviour(s) that will be addressed as part of the individual learning plan.
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A practical focus on establishing small units of behaviour which build towards larger, more significant changes in functioning related to improved health and levels of independence.
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Collection, quantification, and analysis of direct observational data on skill acquisition during treatment and follow-up to maximise and maintain progress toward individual learning goals.
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Efforts to design, establish, and manage the social and learning environment(s) to minimise behaviours of concern and maximise learning, socialisation, and inclusion.
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An approach to the treatment of behaviours of concern that links the function of (or the reason for) the behaviour to the selection and design of an individualised positive behaviour support plan.
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Use of a carefully constructed, individualised and detailed behaviour-analytic learning plan that utilizes reinforcement and other behavioural principles and excludes the use of methods or techniques that lack consensus about their effectiveness based on evidence in peer-reviewed publications.
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Use of treatment protocols that are implemented repeatedly, frequently, and consistently across environments until discharge criteria are met.
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An emphasis on ongoing and frequent direct assessment, analysis, and adjustments to the service delivery model and learning plan based on client progress as determined by observations and objective data analysis.
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Direct support and training of family members and other involved professionals to promote generalisation of new skills across people, places, and contexts.
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A comprehensive infrastructure for supervision of all assessment and treatment by a trained professional working within the scope of their practice and competence. (Adapted from the Behaviour Analyst Certification Board (2014). Applied behaviour analysis treatment of autism spectrum disorder: Practice guidelines for healthcare funders and managers. Retrieved from http://bacb.com/asd-practice-document/)
We fear that public misinformation and mischaracterisations about Applied Behaviour Analysis may lead to policy reform and government positions that prevent people with autism and their families from accessing effective interventions based on rigorous scientific research.
We ask the Federal Government to consider correct and up-to-date information about Applied Behaviour Analysis (including its definition and practice components) when making decisions about the provision of evidence-based interventions and supports for individuals with autism.
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~ABIA
Autism Behavioural
Intervention Association
We also seek government recognition of ABA as a science-based discipline offering a range of proven and effective responses to autism. We seek government support with a public education campaign on EPB, and its importance in ensuring effective responses to autism.
Item e - the demand for and adequacy of Commonwealth, state and local
government services to meet the needs of autistic people at all life stages.
The key issue here is building the capacity of the Australian workforce to respond effectively to the needs of individuals with autism, and their families. In 2019 the Federal Government highlighted the need for “… up to an additional 90,000 full time equivalent employees (FTE) needed over the next five years!”
In the ABA space, as elsewhere, Australia has a significant shortage of qualified and experienced professionals able to deliver the services that are needed across the life-span of an individual with autism. We see evidence of this at a general level as recently as today (15 July 2020) in an ABC news article: “Disability support sector struggling to keep up with growing demand for paid and unpaid care”.
An evidence point for the lack of high-quality Australian ABA professionals is the number of our providers sourcing staff internationally (see survey results in call-out box below). Another is the long wait-lists with ABA Service Providers (ie families who’ve done their research and want EBP/ABA for their child or loved one but cannot access it — even with NDIS funding).
Individuals with autism currently make up one third of all NDIS recipients. This means the need for services, especially EBP/ABA, will continue to grow. The growth for ABA based-services has already occurred in the USA? market and Australia generally follows closely in North America’s footsteps.
ABIA Service Provider Survey, February 2020
In partnership with Aspire Learning in NSW, the Autism Behavioural Intervention Association undertook a behaviour analysis questionnaire. Thirteen questions were posed to Behaviour Analysis service provider organisations and 35 organisations responded. It is estimated there are ~75 specialist Behaviour Analytic service providers in Australia, but many hundreds of others providing behaviour based or behaviour analytical services in conjunction with other disability support services.
Our survey found that:
e 65.7% of providers hire Board Certified Behaviour Analysts (a world-recognised, USA credential)
e 668.6% of providers employ non-Australian-resident Behaviour Analysts
e 40% have sponsored an overseas trained and qualified Behaviour Analysis through a visa scheme
e 60% employ four or more Behaviour Analysts from outside Australia
e €41% of providers are using a migration agent to make the hire
e 71.4% will be looking to employ a non-resident Behaviour Analyst in the next two years (of this, 19.4% will employ more than 5 Behaviour Analysts; 35.5% will employ more than two)
’ https:/Avww.abc.net.au/news/2020-07-15/disability-support-workforce-struggling-to-keep-up-with-demand/12452438
“The professional discipline of applied behavior analysis (ABA) has grown at an unprecedented rate over the past two decades.” Deochand & Fuqua, 2016; BACB Certification Trends.
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While survey results relate specifically to high-level workers (ie Behaviour Analysts, ABA Program
Supervisors), the situation in Australia is that capacity needs to be built at all levels
(Doctorate/Analyst/Analyst Support/Technician).
In addition to a shortage of Behaviour Analysts nationwide, we also have a shortage of Behaviour
Therapists. This is ironic and frustrating in an era of high (and growing) unemployment,
underemployment and underutilisation – and given the disability workforce shortage! Furthermore, Behaviour Therapists are highly-sought after in the wider disability sector (not just families choosing ABA services). This is because of the evidence base and rigour inherent in EPB. Its’ also because behaviour analytics is a scientific methodology and an accredited discipline. This demand for therapists has resulted in the current situation where families wanting ABA services for their child are now competing with general disability service providers who are sending ABA trained people out as carers.
Our organisation has responded to these issues in the following manner:
Macro Level Micro Level
Pre Covid19 we were in the process of setting We are currently developing a training course
up an Industry Labor Agreement. This was [Become an Autism Support Worker] to upskill
about easing time, costs, and the red-tape burden o individuals wanting to work with ASD
of bringing Behaviour Analysts out to Australia. adults in a care capacity, or
We were doing this to grow our workforce, to o disability support workers wanting to
support local service providers, and to bring offer better supports for individuals experienced employees to Australia. It was with ASD. being done to develop more expertise, create local IP, train more supervisors. This training is a strategic response to disability workforce needs and to the Royal Commission
We recently responded to the Skilled Migration into the violence, neglect, abuse, and
Occupation Lists review, currently being exploitation of people with disability. undertaken by the Department of Education, Skills and Employment. We asked for Psychotherapist to move to long-term list, we asked for Disabilities Services Officer to move to long-term list. We did this because these are two key job titles under which Behaviour Analysts are bought to Australia. We did this to grow our workforce and to make it more attractive to Behaviour Analysts to come to Australia (ie the longer-term list provides a clearer pathway to permanent residency).
We have raised with government the need for an NB: Our organisation is the primary trainer of
ANZSCO Unit Code for the role of Behaviour Behaviour Therapists in Australia. We have done Analyst. ABA is an emergent field and the lack this for 10 years, training hundreds of therapists, of ANZSCO code is hindering industry and using materials written and developed by local and sector growth which means individuals with international Subject Matter Experts. autism and their families continue to miss out, and workers are harder to attract.
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We seek government support in building, professionalising, and regulating the ABA workforce within Australia. This will help ensure that people with autism and their families are protected against fad, ineffective, or potentially harmful interventions delivered by unqualified service providers.
We ask the Federal Government to support our organisation and sector in professionalising local talent to build a workforce able to respond effectively, efficiently, rapidly, and in a best-practice manner, to the needs of individuals with autism (and their families). Finally, we seek to collaborate with government to set and define minimum educational standards and training requirements of disability/autism support workers.
Item g - the social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people. For individuals with ASD and a co-morbid intellectually disability, the lifetime cost society is thought to be in excess of $1 million (Buescher, Cidav, Knapp, & Mandell, 2014). However, the quality of life cost to families is much greater (Dillenburger, 2016). For example, families of a child with autism frequently must pay higher than average childcare costs, and many times one parent is forced to give up work or reduce working hours due to provide care for the child with ASD. It is estimated that only 15% of adults with ASD are engaged in meaningful employment (Rosenblatt, 2008).
In their review of cost benefit analyses of ABA therapy, Cross, Coyne, Broberg, and Lubbers (2013) determined that the cost savings substantially exceeds the early intensive treatment cost for a 3-year old child with autism or ASD. Some reports have found a home-based program to be less expensive than alternative non-ABA based special school placements (Columbia Pacific Consulting, 1999).
Synergies Economic Consulting (www.synergies.com.au) conducted an analysis of the economic costs of autism spectrum disorder in Australia, and identified the primary factors that are likely to impact costs for people with autism:
Outcomes for individuals with ASD - summary
Factor This will mainly impact... The main cost impacts of this factor
are…
Poor physical and mental health: Physical and mental health Increased healthcare expenditure
• for ASD alone General well-being Increased social services expenditure
- for associated comorbidities Low educational attainment. Employment Increased education expenditure
Living independence (special education, education support) General well-being Increased social services expenditure
Low employment. This can manifest in Income (to the individual) Reduction in productivity
either: Productivity (to the economy) Increased social services expenditure
1. unemployment Mental health (employment support programs, day
2. underemployment, which is either: General well-being programs)
• only working part-time when want Reduced quality of life
to/can work full time; and/or Reduced income for the individual and
• employed in a job that is not fully increased reliance on welfare support
utilising the person’s skills and (transfer effect) capabilities. Foregone taxation revenue for government (transfer effect)
Reduced living independence General well-being Increased social services expenditure
Mental health (eg supported accommodation, personal care services) Increased reliance on informal care
Reduced social functioning. This can Employment Increased healthcare expenditure
result in social isolation, reduced General well-being Employment impacts
likelihood of forming long-term
relationships etc. Mental health Increased reliance on informal care
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And costs for families of people with autism:
Outcomes for families with ASD - summary
Factor This will mainly impact... The main cost impacts of this factor
are…
Employment of primary carer will be Income (to the individual) Reduction in productivity
affected (more likely to be unable to Productivity Reduced income for the family and
work, or only maintain part-time work) General well-being increased reliance on welfare support (transfer effect) Foregone taxation revenue for government (transfer effect)
Increased stress Family relationships (eg can increase Increased healthcare expenditure
likelihood of marital breakdown) Mental and physical health (eg depression) General well-being
Social isolation Mental and physical health Increased healthcare expenditure
General well-being
Using a representative sample, the authors of the report estimated the following direct and indirect costs associated with autism:
Direct costs of ASD per annum
Category Total cost ($’000 Dec 2010) Total cost ($’000 Dec 2010)
-
low prevalence - high prevalence Healthcare 507,318 859,279
Social services 316,165 316,165
Education 115,964 208,492
TOTAL - DIRECT 939,447 1,383,935
Other tangible costs of ASD per annum
Category Total cost ($’000 Dec 2010) Total cost ($’000 Dec 2010)
-
low prevalence - high prevalence Employment 1,866,985 3,221,278
Informal care 1,450,050 2,705,683
TOTAL - OTHER 3,317,035 5,926,961
Intangible costs of ASD per annum
Category Total cost ($’000 Dec 2010) Total cost ($’000 Dec 2010)
- low prevalence - high prevalence Burden of disease 3,910,162 3,910,162
The authors noted that a number of costs were not estimated due to lack of data. These include:
the cost of other conditions on the autism alternative therapies;
spectrum (e.g. PDD-NOS); additional education support services;
early intervention programs; additional living support services;
comorbid conditions (which is mainly due cost of informal care for children with
to a risk of double-counting at least some ASD;
of these costs); healthcare costs for other family members;
the costs of underemployment; the costs of family breakdown; and
other costs of unemployment (over and household repairs and home modifications.
above the productivity impacts);
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~ABIA
Autism Behavioural
Intervention Association
Synergies Economic Consulting also carried out a cost benefit analysis of providing ABA therapy to children with ASD (www.synergies.com.au). The authors designed three groups to capture the population of children with autism. The three groups were described as follows:
=“ Group I — children with severe intellectual impairment — likely to be nonverbal and suffer from significant behavioural issues and anxieties (estimated to account for approximately 20% of the
children that would receive early intervention);
=“ Group 2 — children with mild to moderate intellectual impairment — likely to experience difficulties with language and communication, particularly in social settings (estimated to account for approximately 60% of the children that would receive early intervention); and
=“ Group 3 — children with High Functioning Autism — while not suffering from intellectual disabilities, individuals in this group can experience difficulties in other areas that can adversely impact long-term outcomes in key areas (estimated to account for approximately 20% of the
children that would receive early intervention).
The authors applied a cost-benefit analysis to each group. The application of the cost-benefit framework to these outcomes and percentages resulted in average per person total lifetime benefit estimates of:
$1.3 million for group #1 | $1.2 million for group #2 | $0.75 million for group #3
Key area Group #1 Group #2 Group #3 outcomes
Without El With El Without El With El Without El With El
Unemployed n/a n/a 75% 30% 30% 5% Living independence FT care 80% 40% 30% 10% 0% 0% Shared accom. 20% 60% 65% 65% 30% 10% Independent/su n/a n/a 5% 25% 30% 20% pervised living Independent n/a n/a 0% 0% 40% 70% Note: ‘n/a’ means the outcome is assumed to be not applicable to a child in this group. Source: Proportions provided by the RAG.
This table summarises the number of children categorised under each group and the total economic
benefit attributable to each group:
Total economic benefit of early intervention for a cohort of children with autism
Average benefit per child No. Children Total economic benefit Group #1 $1,297,000 237 (20%) $307,500,000 Group #2 $1,202,000 711 (60%) $855,200,000 Group #3 $747,000 237 (20%) $177,100,000 Total 1,185 $1,339,800,000
Note: Totals may not add due to rounding. Source: Synergies modelling.
Subtracting the total cost of providing early intervention to the cohort,
which is estimated at
$118.5 million ($100,000 multiplied by 1,185 children), results in a total net economic benefit estimate
of $1,221.3 million.
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Jacobson, Mulick, and Green (1998) also developed a cost–benefit analysis model of ABA therapy based on the range of outcomes reported by previous group studies. The authors applied representative costs from Pennsylvania, including costs for educational and adult developmental disability services, in a cost-benefit model, assuming average participation in ABA therapy for three years between the age of 2 years and school entry. Information on the proportion of individuals accounted for by each group, ABS data on the number of live births in Pennsylvania per annum, and autism prevalence data was applied to these estimates to determine the total economic benefit for a cohort of children with autism in (a) regular education without supports, (b) some in special education (partial effects), and (c) some in intensive special education (minimal effects). At varying rates of effectiveness, the model proposed by Jacobson et al estimates that cost savings as a result of participating in ABA therapy range from $187,000 USD to $203,000 USD per child for ages 3-22 years, and from $656,000 to $1,082,000 per child for ages 3-55 years. In this study, the authors assumed that there would be differences in initial costs of $33,000 and $50,000 per year for ABA therapy, but found that these differences had a modest impact on cost-benefit balance. The cost of ABA therapy was greatly outweighed by estimated savings.
Chasson, Harris, & Neely (2007) compared the costs associated with 18 years of special education to the costs associated with the implementation of an average of 3 years of ABA therapy in an effort to minimise the need for special education. The authors determined that the state of Texas would save $208,500 per child across eighteen years of education with ABA therapy. When applied to the conservative estimate of 10,000 children with autism in Texas, the State would save a total of $2.09 billion with ABA therapy.
An important question is whether these same effects may be achieved through less intensive supports. Most educational programs available to young children with autism are based in their communities, and often, an “eclectic” treatment approach is used, which draws on a combination of methods including applied behaviour analytic methods such as DTT; structured teaching procedures; speech-language therapy, with or without picture communication or related augmentative or alternative communication strategies; sensory integration therapy; and typical preschool activities. In Australia, a common recommendation for young children with autism and related conditions is one hour of speech therapy and/or one hour of occupational therapy per week or fortnight, to address all areas of the child’s development.
Three studies that compared intensive ABA programs (25– 40 hours/week) to equally intensive eclectic approaches have suggested that ABA programs were significantly more effective (Cohen et al, 2006, Eikeseth et al, 2002; Howard et al, 2005). For example, Eikeseth et al (2002, 2007) compared ABA therapy to eclectic treatment in a cohort of young children with autism. Children in both groups received a minimum of 20 hours per week of treatment for 1 year from trained therapists at their local schools. The ABA therapy group received a comprehensive treatment based on applied behaviour analysis. The eclectic group received a multi-disciplinary treatment consisting of psychology, speech therapy, and occupational therapy, as well as TEACH. At a 1-year evaluation, 13 children who had received intensive behavioural treatment made significantly larger improvements than a comparison group of 12 children who had received intensive, eclectic intervention. On average, the intensive behavioural group gained 17 points in IQ, 13 points in language comprehension, 23 points in expressive language, and 11 points in adaptive behaviour. By comparison, the eclectic group obtained average changes of +4 points in IQ, –1 points in language comprehension, –2 points in expressive language, and 0 points for adaptive
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behaviour. At follow-up, behaviourally treated children also achieved standardized test scores in the average range more often than did eclectically treated children.
Another study that involved children with autism and global developmental delay/mental retardation retrospectively compared a less intensive ABA program (mean: 12 hours) to a comparably intensive eclectic approach and found statistically significant outcomes that favoured those in the ABA therapy group (Eldevik, 2006).
To date, there are no comparative studies that show that less intensive interventions, such as weekly or fortnightly speech and language therapy, occupational therapy, or eclectic treatment, produce outcomes that are equal or superior those reported in the ABA therapy literature. It is also worth noting that the National Autism Centre’s National Standards Project, a comprehensive meta-analysis about the level of scientific evidence that exists in support of the many educational and behavioural treatments currently available for individuals with autism, ranks Academic Interventions (or participation in general special education) as an unestablished intervention. Unestablished means that research has been conducted, but the quality, quantity, and consistency of research findings have generally been poor or do not apply to individuals with ASD, so we cannot be confident about what the effects of participation in special education classrooms might be.
As discussed above, there are adverse effects associated with denying, delaying, or inadequately providing ABA therapy to children with autism and their families (Cross et al, 2012), such as increased cost to society in the long run. For example, supported accommodation for an adult with autism or developmental disabilities living in Australia (and receiving NDIS support) may cost well over $300,000 per year (https://www.ndis.gov.au/SDA-pricing-payments.html)) and may be associated with a poorer quality of life (Bigby, Bould, & Beadle-Brown, 2017). In addition, it is unlikely that a person with such significant needs will hold meaningful employment and become a tax paying member of society. Even for children who experience varying effects of ABA therapy (partial effects or minimal effects), the long-term cost savings are likely to significantly outweigh the initial costs of ABA therapy.
Cross et al summarise the potential negative effects of failing to fund adequate ABA therapy for children with autism:
“Like effective treatments for other severe childhood disorders, such as cancer, early intensive behavioural intervention can be described as aggressive, intrusive, and necessitating a high level of specialized expertise for effective delivery. The decision to invest in intrusive, expensive treatment for childhood cancer is usually based on several factors, including the scientifically demonstrated efficacy of other treatments, and the probable consequences of pursuing other treatments or no treatment at all.
If a child with a major disorder needs treatment, cost is usually not a major factor; various public and private resources are typically made available. Many parents and professionals are beginning to insist that the same considerations apply to the treatment of children with autism.
We should all recognize that the most expensive interventions are those that fail to produce
meaningful, measurable, lasting benefits, regardless of cost. While the focus on “costs” above has centered on the financial costs, there clearly are other costs associated with the provision or denial of treatment. Some of these costs are more easily assessed such as parental reductions in the symptoms of depression, anxiety, or increased likelihood for marital stability in families receiving early intensive behavioural intervention (EIBI; Cohen, et al, 2006).
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Other emotional, psychological, societal costs resulting from a denial of child’s medically necessary treatment are significantly more difficult to capture and quantify. The benefits of EIBI to the child and the family have been well documented and are the continued topics of refined research to date. Currently, financial cost analysis fully demonstrates the long-term savings that can be realized with the adequate provision of EIBI treatment for children with autism.”
We ask that the government recognise the adverse effects associated with denying, delaying, or inadequately providing EPB, particularly EIBI to children with autism (and their families). We also ask the government to consider the long term costs of failing to provide evidence-based behaviour support to individuals with autism and severe behaviours of concern. Without access to evidence based interventions and supports, there is a higher probability that individuals with autism will experience poorer educational outcomes, exclusion and social isolation, and will be reliant on government support into adulthood for custodial care. We ask that the government recognize that the most expensive interventions are those that fail to produce meaningful, measurable, lasting benefits.
Item i - the development of a National Autism Strategy and its interaction with the next phase of the National Disability Strategy. Our organisation strongly supports development of a National Autism Strategy. The National Autism Strategy should consider the perspectives of individuals with autism, their families and carers, service providers, and researchers. This strategy should recognise the human rights and unique strengths of people with autism, and should strive to create a more inclusive society that provides equal opportunity to individuals with autism.
However, this strategy must also reflect the need for the provision of evidence-based educational and behavioural strategies and supports to help people with autism learn new skills, become more independent, and achieve their goals and aspirations. There is no “one-size-fits-all” approach to supporting individuals with autism. Rather, a variety of evidence-based teaching and behaviour support strategies can and should be integrated into an individualised program of support that reflects the strengths, needs, preferences, and aspirations of the individual. We seek to be involved in the process. We are also happy to provide information to support strategy development.
Conclusion
We congratulate the Senate for establishing this Select Committee on Autism. We look forward to being part of the consultative process, and to working with government to form solutions and improve outcomes. -ooo0ooo
For information about this submission or its contents, please contact Susie Pavey, CEO.
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