Submission No 60
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM DISORDER
Organisation: Autism Behavioral Intervention Association (ABIA)
Date Received: 15 April 2016
The number of autism diagnoses has almost doubled between 2003-06, and doubled every three years since …
The need of a child with autism (and their family) is for immediate and effective intervention that assists them to improve or reverse developmental deficits.
The annual total cost of autism [has been calculated] as being between $8.1B and $11.2B, with a mid-point of $9.7B) per year.
Submission S060 Received 15/04/2016 Family and Community Development Committee
MARCH 2016 AUTISM SUBMISSION
Response to inquiry into services for people with autism spectrum disorder
ABIA
1/121 Maling Road, Canterbury vic 3126
t: 03 9830 0677
Responses to Terms of Reference
a) The prevalence of autism spectrum disorder in Victoria;
In 2007 MacDermott1 and colleagues reported an autism prevalence of 1:160 (0.6%) Australian children with an ASD. More recently, Barbaro and Dissanayake2 (2010) reported that 1:119 (0.8%) Victorian 2‐year‐olds met criteria for ASD. Also of note is the 2012 SDAC3 which showed an estimated 115,400 Australians (0.5%) having autism (a 79% increase on the 64,400 people estimated to have the condition in 2009). (ABS 4428.0 - Autism in Australia, 2012).
As Victoria’s autism peak body writes in their (2011) position paper, Prevalence of Autism Spectrum Disorder in Australia, all recent studies support a rise in the prevalence of autism over time, especially since the 1990s. This is most likely due to a combination of changing diagnostic criteria and increased public and professional awareness of autism (Autism Victoria now T/A AMAZE, position statement, 2011).
Writing for The Australian in January 2016, journalist Kate Legge notes that “the number diagnosed with autism in Australia as having almost doubled between 2003-06, and doubled every three years since, hitting 115,000 in 2012 and likely to top 230,000 in 2015 when survey data is finalised”. Based on the last [most recent] official Australian data, the research behind Legge’s report shows Victoria as having the highest rate of autism (about 0.7%) compared with slightly more than 0.5% for the closest other state (Tasmania).
Further evidence of the high rates of autism can be seen in NDIS figures which officially show 33% of registered NDIS users in South Australia as having autism. The figure for Victoria is 24%, though full rollout has not yet occurred in this state4. The unofficial figure, as recently reported by The Australian, is that children with autism now make up 46% of the NDIS in South Australia5.
Both local data and rising rates are comparable with other western countries. For example, in March 2014 The Center for Disease Control and Prevention released USA autism-prevalence data. This identified 1:68 children (1:42 boys and 1:189 girls) as having Autism Spectrum Disorder.
b) The availability and adequacy of services provided by the Commonwealth, State and local governments across health, education, disability, housing, sport and employment services;
Others within our industry will address this question.
c) The adequacy of services to be provided under the National Disability Insurance Scheme (NDIS)
Adequate means “sufficient to satisfy a requirement or meet a need”. The need of a child with autism (and their family) is for immediate and effective intervention that assists them to improve or reverse developmental delays or deficits. According to DSM-56, the deficits inherent in autism commonly show in social-emotional reciprocity; nonverbal communicative behaviors; and developing, maintaining, and understanding relationships. (DSM-V 2015).
It’s now commonly agreed, and government policy supports the assertion, that early intervention is key to promoting optimal developmental outcomes for special needs children. Moreover, interventions that build the strength of both the child and the family have been shown to lead to better long term outcomes.
We believe adequacy of services for children with autism (and their families) comes from evidence-based services rather than number of services or number of providers. Evidence-based means proven, reliably, replicable. Evidence-based means supported by clinical research and/or academic studies. The NDIS must support evidence-based therapies and interventions over and above eminence- or faith-based treatments. Our country’s scarce and valuable resources, our hard-earned taxpayers’ monies, must be directed to services and supports that will truly pay off. They must be directed to where difference and improvement can be assured.
To this end we reiterate the case for supporting families with Applied Behaviour Analysis (ABA). Intervention based on the principles of ABA is considered ‘established/eligible based on evidence’ (Prior, et al, 2011). It i also supported by 50 years clinical research and many hundreds of research studies. A large proportion of children with autism consistently demonstrate substantial gains following early intensive ABA intervention (e.g. Ben-Itzchak & Zachor, 2007, Harris & Handleman, 2000, Lovaas, 1987, Leaf, et al., 2011)
- Approx. 50% make substantial gains
- Approx. 25% make moderate gains
- Approx. 25% make minimal gains
International guidelines, reviews, and recommendations on early intervention in ASD continually point to the importance of the integrity of intervention implementation in achieving positive outcomes. The key integrity measure with ABA is the number of hours of intervention provided. Children doing ABA commonly require 20+ hours (dependent on age and their position on the spectrum).
Intensity is important because it replicates the thousands of typical interactions that a child experiences each day with parents, peers, friends, and through the myriad of life situations (childcare, shopping, leisure and sports activities, school, family celebrations). Furthermore, there is no empirical evidence to support non-intensive interventions.
In contrast, there is ample published ABA research showing that 30-40 hours of weekly intervention produces robust outcomes. Children diagnosed early, particularly those under 2½ years may require less hours, but in line with developmental needs hours will ultimately need to increase. Further evidence of this need is provided in the table below.
The literature supports high intervention hours each week (over and above the hours a parent might spend applying the interventions at home or in the community), for example:
‘Fifteen to twenty-five hours per week is generally recommended for autism early intervention in the research literature with some programs recommending as much as 40 hours per week’ (Roberts & Prior: 2006).
‘The child should be actively engaged in the intervention activities and should receive at least 25 hours of structured intervention each week’ (Rogers, Dawson & Vismara: 2012).
The American Academy of Pediatrics recommends a minimum of 25 hours per week.
“Children receiving low-intensity interventions have not demonstrated the same substantial gains in cognitive skills seen in the early intensive intervention paradigms’ (Warren, McPheeters, Sathe, Foss-Feig et al; 2011).
… high intervention intensity was the only variable that independently predicted both IQ and ABC gain. In both cases, high intensity (36+weekly intervention hours) was associated with larger gains’ (Maglione, Gans, Das, Timbie et al: 2012).
d) Evidence of the social and economic cost of failing to provide adequate services;
Investing in children’s formative years has been shown to improve educational, health, and wellbeing outcomes as well as drive economic growth and productivity. Several studies contend that early childhood interventions can limit the impact of damaging environmental factors on childhood development, and close the gap between those children that are advantaged, and those experiencing disadvantage and risk factors such as abuse and neglect.
In the United Kingdom, autism is the most costly medical condition. American research shows the cost of autism as having recently tripled, now costing the nation $137B per year. Regrettably, Australia is in a similar position to our western first-cousins.
In 2007 Synergies Economic Consulting assessed the economic costs of ASD in Australia. Updated in 2011, this assessment showed the annual total cost of autism as being between approximately $8.1B (low prevalence) and $11.2B (high prevalence), with a mid-point of $9.7B (in December 2010 dollars). Five years down the track, it has been suggested that the 2015 economic cost of autism is probably twice as much as the 2011 figure (ie $20B per year)*.
As Australian families who have a child with autism know, autism comes with a variety of costs beyond the expected and immediate healthcare, social services and educational costs. Less tangible, families with a child on the spectrum incur financial costs in areas of employment, childcare, and adverse impacts (burden of disease). A recent study West Australian study established the median cost of a child being diagnosed with autism as $34,900 per annum. While much of this can be attributed to a direct loss of employment income, it was also found that: “A delay in diagnosis was associated with an indirect increased financial burden to families”9.
As an autism peak body we see early intervention as a positively compounding investment. Families whose child is supported in the early years cope and fare better while children with autism gain better education, employment, and life outcomes. Early intervention also poses significant economic savings for taxpayers and governments, as shown in research by Ganz (2007) and Newschaffer et al (2007) who estimated the per capita lifetime cost of untreated autism as between $2-$4M10.
e) The projected demand for services in Victoria. Others within our industry will address this question.
Speaking Opportunity
We wish to nominate
Dr Amanda Sampson
(one of the original founders of our organisation, and mother of a child with autism)
redacted: s47F - personal privacy
redacted
Ms Susie Pavey
General Manager
Autism Behavioural Intervention Association
redacted: s47F - personal privacy
redacted
Our Contact Details
- Address: 1/121 Maling Road, Canterbury Vic 3126.
- Postal address: PO Box 239, Canterbury Vic 3126.
- Office telephone (03) 9830 0677; or Susie Pavey, General Manager,
redacted: s47F - personal privacy.
Bibliography
ABC News, Autism sets back families $35K per year; Sep 2014. http://www.abc.net.au/news/2014-09-14/wa-study-puts-price-on-autism-diagnosis/573707.
Autism Speaks, New Research Finds Annual Cost of Autism Has More Than Tripled to $126 Billion in the U.S. and Reached £34 Billion in the UK; March 2012. < https://www.autismspeaks.org/about-us/press-releases/annual-cost-of-autism-triples>.
Autism Speaks, Autism’s Costs to the Nation Reach $137 Billion a Year; April 2012. <https://www.autismspeaks.org/science/science-news/autism%E2%80%99s-costs-nation-reach-137-billion-year>.
Health & Human Services, Early childhood intervention — an overview of best practice, Desktop Review, by KPMG; July 2014. http://www.communityservices.act.gov.au/__data/assets/pdf_file/0007/635695/Early-Intervention-Best-Practice.pdf
London School of Economics and Political Science, Autism is the most costly medical condition in the UK; 2014. http://www.lse.ac.uk/newsAndMedia/news/archives/2014/06/Autism.aspx
Synergies Economic Consulting, Economic Costs of Autism Spectrum Disorder in Australia, Updated Study, April 2011, Synergies Economic Consulting Pty Ltd. <www.synergies.com.au>.
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1 MacDermott, S., et al. (2007). The prevalence of autism in Australia. Can it be established from existing data? Report for the Australian Advisory Board on Autism Spectrum Disorders.
2 Barbaro, J. & Dissanayake, C. (2010). Prospective identification of autism spectrum disorders in infancy and toddlerhood using developmental surveillance: The social attention and communication study. Journal of Developmental and Behavioral Pediatrics, 31, 376 - 385
3 Survey of Disability, Ageing and Carers, ABS 4 NDIS, 2015 Annual Report
6 DSM-V is the recognised ‘bible’ of all mental health disorders
7 Center on the Developing Child 2007, A Science-Based Framework for Early Childhood Policy, Cambridge, MA: Harvard University.
8 http://www.bioautism.org/content/cost-autism-0 9 http://www.plosone.org/article/fetchObject.action ?uri=info:doi/10.1371/journal.pone.0106552&representation=PDF
10 https://www.legis.iowa.gov/docs/publications/SD/16312.pdf