elect Committee on Autism
- Submission 43 rN £
won
7
Assistance Dogs Australia
Submission to the Senate Select Committee
on Autism
Leds
June 2020 N Vj
Assistance Dogs
Australia
Submission Contents
sam a 01010 [01d (0p cece 2 Il. = Organisational BaCkQroUnd.n…..cccccccccccssccccsssseecccesseeecceseeeeccseeeccsseseececseeseceeseeeeescseeeesceseeeesessnseesesaaes 2 III. Assistance Dogs Australia’s aUtisMm SUPPOFt PFORAM ……..cccccccccecsscccesceseccecesseseeceestseeeeceteeeeesenseeees 2
-
Prevalence Of AUTISM IN AUStIAlia eee cccccccseeeseeecctecessteeeceeeeeeseeeceeeeeeeeeeccseeesteescnseessaeescnseeenaeeetaes 3 I. — Increased prevalence Of AUTISM ………ccccceccceeseccceesseeecceseeeecceeeeecesssseececssseaeeseseseeecessseeeccsseeecessaseeeeeaaaes 3 ll. Undiagnosed adults as a result of changes to DMS CLit@Via…… ccc cccccccecssssceeeccssseeeccssseeecesstseeeeseaes 3
-
Social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions Of AUTISTIC PEOPIE ….. eee ccccccssscececssseeeecesseseecessseeeecsssseecetstseeeeensaes 4
-
Adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people………… 5
-
Adequacy of funding for research iNtO AULISM ooo… cece ccccccecceccessseeeecssseeecessseeeccsseseecesseeeecsteseeceneaeeeeees 7 (Sn ©(0] 01610] [0] 6 8
Assistance Dogs Australia Page 1 of 8
- Introduction |. Submission Summary
Assistance Dogs Australia would like to thank the Senate Select Committee on Autism for the opportunity to support the development of a National Autism Strategy. We feel this is a crucial element in improving the quality of life for all Australians living with autism. As a result of our extensive experience and innovative approaches in the field of autism support, Assistance Dogs Australia has a thorough understanding of the services required to respond to significant community need, and have a sound knowledge of the gaps in data, research and available funding that create delays in providing these essential services. Within this submission we have addressed several of the Committee’s Terms of Reference, highlighting our perspective on each issue, and have provided recommendations where relevant. The Terms of Reference covered in this submission include:
Prevalence of autism in Australia.
Social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of people living with autism.
Adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for people living with autism. Adequacy of funding for research into autism.
ll. Organisational Background
Assistance Dogs Australia is a national charity that supports and empowers Australians living with disability, by partnering them with specially trained dogs. Our free to client Assistance Dogs support greater independence and improved health and wellbeing for individuals and their families — helping to build inclusive, diverse and resilient communities. Over 1,400 people access our leading programs annually, which currently support people living with a physical disability, autism or post-traumatic stress disorder (PTSD). These core programs incorporate additional community engagement initiatives such as Education Support, Animal Assisted Therapy, Courthouse Dogs and Pups in Prison programs.
Since our inception in 1996, Assistance Dogs Australia has successfully placed over 400 dogs with clients across Australia. We have established a large presence within the community, creating a strong support network of over 250 volunteers. Our 20+ years of experience makes us world leaders within the field of disability support. We continue to set new benchmarks of success in training and placement, and our dedication to excellence enables us to be a trailblazer with the services we provide. We have been actively involved in research projects, partnering with leading Universities across Australia, to produce evidence-based data that supports both the impact of and need for our work. Additionally, our accreditation with Assistance Dogs International ensures that our services are developed based on strict international standards.
Ill. Assistance Dogs Australia’s autism support program
Our autism program commenced in 2014, in response to a growing number of enquiries from parents seeking additional resources to support their children living with autism. Since launching the program, we have successfully placed 45 autism Assistance Dogs with individual clients and their families, and 18 Educational Support Dogs within schools to assist students who experience learning and behavioural difficulties as a result of autism. In addition to the training and placement of Assistance Dogs, our program includes services such as Animal Assisted Therapy (AAT).
Animal Assisted Therapy: Assistance Dogs Australia has held over 1000 therapy sessions since the AAT Program commenced in 2017. AAT is goal-directed and designed to promote social, emotional, cognitive and physical functioning. The involvement of a trained dog in occupational therapy sessions aims to decrease physiological arousal and stress, and provide motivation to engage in social interactions, play and functional tasks. During the therapy sessions, our Occupational Therapists support individuals to reach identified goals in the following areas:
Assistance Dogs Australia Page 2 of 8
Social participation and communication skills. School and work-based skills.
Emotion and sensory regulation. Community engagement and access.
Fine motor, gross motor skills. Public transport access and confidence.
oO OO 0 90 Oo Oo 0 0
Self-care and activities of daily living. Health and wellbeing.
Peer reviewed published works: In 2017-18 Assistance Dogs Australia and the University of Sydney conducted a pilot research project in which 78 individuals with autism attended five AAT sessions. The research also investigated the parent perspectives of the impact of AAT sessions involving trained dogs with their children with autism. This research has been published in the Journal of Autism and Development Disorders and is titled Animal Assisted Therapy for Children and Adolescents with Autism Spectrum Disorder: Parent perspectives. Seventeen parents of children involved in the pilot project participated in interviews about their child’s experience in AAT sessions. The study found that the presence of the dogs facilitated their children’s engagement, enjoyment, and motivation. Parents also reported that this contributed to gains in the child’s communication with others and the dog, behavioural regulation, and community participation. These findings indicate that parents supported the use of AAT and that dogs facilitated therapeutic gains?.
- Prevalence of autism in Australia |. Increased prevalence of autism
According to the Australian Bureau of Statistics (ABS), an estimated 205,200 Australians had autism in 2018, a 25.1% increase from 2015’s figure of 164,000; however, based on a review of recent studies from national and international institutions, it is believed the prevalence of autism has in fact risen by 40%, with 1 in 70 people believed to be living with the condition in Australia’. Although it is evident from available data that the prevalence of autism has increased over time, it does not necessarily indicate that the rate of autism has increased, rather that we as a community are better able to recognise the signs of and accurately diagnose autism. While our understanding of autism is improving, its true prevalence is still unknown due to the large portion of adults believed to be living with autism without clinical diagnosis.
Il. Undiagnosed adults as a result of changes to DMS criteria
One of the key tools used to clinically diagnose autism is the DSM (Diagnostic and Statistical Manual of Mental Disorders). The criteria within this manual has been subject to variations over time, impacting the reported prevalence of autism in Australia, particularly within older generations. The primary reason for this is that the initial
two versions of the DSM | and II indicated that children with behaviours and characteristics symptomatic of autism
were classified as having childhood schizophrenia. Diagnostic criteria specific to autism were not added until 1987 (DSM Ill), which were then revised in 1994 (DSM IV)4.
The revisions made to the DSM IV in 1994, coupled with greater understanding of the condition amongst professionals, have had a significant impact on the number of people clinically diagnosed with autism. The revisions included changes to the amount of detail considered in diagnosing autism, and the number of criteria that need to be met for a diagnosis to be made. The timing of implementing the new diagnostic criteria correlates with the fact that most identified cases of autism are among those people who were born after this date, i.e. under 25 years of
-
London, M. D., Mackenzie, L., Lovarini, M., Dickson, C., & Alvarez-Campos, A. (2020). Animal assisted therapy for children and adolescents with autism spectrum disorder: Parent perspectives. Journal of Autism and Developmental Disorders, 1-12.
-
Australian Bureau of Statistics, 4430.0-Disability Ageing and carers: Summary of Findings, 2018 Autism in Australia, Autism in Australia https://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4430.0Main+Features102018
3 Autism Spectrum Australia (2018), Autism prevalence rate up by an estimated 40% to 1 in 70 people, https://www.autismspectrum.org.au/news/autism-prevalence-rate-up-by-an-estimated-40-to-1-in-70-people-11-07-2018
- Australian Bureau of Statistics, 4430.0-Disability Ageing and carers: Summary of Findings, 2018 Autism in Australia, Autism in Australia https://www.abs.gov.au/AUSSTATS/abs@ .nsf/Lookup/4430.0Main+Features102018
Assistance Dogs Australia Page 3 of 8
age®. Changes to the DSM in 2013 saw further variation to the diagnostic criteria, with the elimination of four previously separate categorises (autistic disorder, Asperger syndrome, childhood disintegrative disorder and pervasive development disorder-not otherwise specified), which are now consolidated under the “autism spectrum disorder” diagnosis®. These changes may have caused additional discrepancies in the prevalence rates.
The significant variations to the DSM criteria over time provides an insight into why some adults living with autism did not receive a clinical diagnosis earlier in life. This creates uncertainty when looking at the true prevalence of autism in Australia. Additionally, this rationale for the lower prevalence rate in adults enables us to challenge the perception that children and young people “grow out of” autism once they reach adulthood, and no longer need access to high quality and evidence-based support services.
Recommendations:
Further research is required to obtain reliable information on the prevalence of autism in Australia, specifically the number of undiagnosed adults. Existing data collection methods may need to be improved to support this process. Not having access to reliable prevalence data makes it impossible for Federal, State and Territory Governments to accurately determine the number of support services that are required to meet all community need.
- Social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of people with autism
The cost of failing to provide adequate support services for people living with autism, particularly services that help children and young people progress through key life changes, is significant. Autism can have a profound impact on the educational outcomes of children and young people, leading to communication difficulties, decreased motivation towards learning, school truancy and anti-social behaviour. This is due in large part to decreased access to school curriculum, as schools are not adequately resourced to support all individuals diagnosed with autism. These issues experienced within the school environment can have a knock-on effect, creating greater barriers for young people when trying to access tertiary education, and later, trying to participate in the workforce. As well as the educational and economic impacts of autism, it can also be an extremely isolating disability, making it incredibly difficult to form social relationships and to access the community. By not making available effective support services for Australian’s living with autism, we risk:
o Sustaining poorer educational outcomes for young Australians, leading to greater barriers when progressing through key life stages — In 2015, almost all children with autism had some form of educational restriction (96.7%), including a small number who were unable to attend school because of their disability’.
oO Increasing the need for formal care, as the ability to live independently within the home is reduced.
o Creating greater dependence on pensions, due to an increase in the unemployment rate — the unemployment rate for people with autism was 31.6%, more than three times the rate for people with disability (10.0%) and almost six times the rate of people without disability (5.3%)’ .
o Increasing substantial mental health issues, as a result of greater stress, anxiety and social isolation.
5 Kulage, K.M., Goldberg, J., Usseglio, J., Romero, D., Bain, J.M. and Smaldone, A.M. (2019). How has the DSM-5 Affected Autism Diagnosis? A 5-Year Follow-Up Systematic Literature Review and Meta-analysis. Journal of Autism and Developmental Disorders. doi:10.1007/s10803-019-03967-5.
® Autism Speaks Inc. (2020), DM 5 and Autism: Frequently Asked Questions, https://www.autismspeaks.org/dsm-5-and-autism-frequently-asked-questions
7 Australian Bureau of Statistics, 4430.0-Disability Ageing and carers: Summary of Findings, 2018 Autism in Australia, Autism in Australia https://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4430.0Main+Features102018
Assistance Dogs Australia Page 4 of 8
In our view, it is essential that all Australians living with autism have the same economic independence as those who do not have autism, and should have the ability to activity participate in the community. This is extremely important in maintaining a high level of health and wellbeing.
Recommendations:
o Further NDIS funding is required for ongoing support and services for children, adolescents and adults diagnosed with autism, such as Animal Assisted Therapy and Autism Assistance Dogs, to improve self care, school and work-based skills, and increase community engagement.
o Key support services should be free-to-client, making them accessible across all socioeconomic demographics.
oO. Increase the number of support programs within primary and secondary schools that have been proven to have a significant impact on educational outcomes and address anti-social behaviours, such as Educational Support Dogs.
o Look beyond schooling to, TAFE/apprenticeships/tertiary education, and evaluate the support services required for young people in these environments to ensure they can successfully complete their studies.
o Increase support services that help Australians living with autism find and maintain employment.
oc Develop and promote greater access to mental health support services.
- Adequacy and efficacy of the National Disability Insurance Scheme (NDIS) The National Disability Insurance Scheme (NDIS) currently reference a report by La Trobe University titled ‘Reviewing Assistance Animal Effectiveness: Literature review, provider survey, assistance animal owner interviews, health economics analysis and recommendations’, by Howell, Bennett & Shiell, 2016, to determine whether to provide NDIS funding to people living with autism for autism assistance dogs. The La Trobe report covers all types of assistance dogs and concludes that there is not enough evidence for autism assistance dogs.
The authors did not conduct a systematic review, the most rigorous form of research evidence, for this important document, but instead conducted a literature review. This is problematic in our view as the NDIS is basing all decisions about funding for Autism Assistance Dogs off low quality evidence. There are substantial problems with La Trobe’s methodology including the select and limited research included in the report, and the important research articles missed in the literature review. Substantial peer reviewed research has been published since 30“ September 2016 highlighting the rapidly evolving nature of this area of research, and the need for the NDIS to use up to date and high quality evidence to make decisions about the lives of people living with autism and the types of supports they can access.
Nine articles were included in the Autism Spectrum Disorder and Other Developmental Disorders section of the La Trobe report. As noted by the author, three of these articles were reviews that included literature cited in the La Trobe report. Of the remaining six, three were reported to be qualitative studies. The reviews included in the La Trobe report were not specific to Autism Assistance Dogs. Reviews included: 0 Animal-assisted intervention for autism spectrum disorder: A systematic literature review (O’Haire, 2013) invetigated animal assisted interventions, of the 14 peer reviewed studies included, only three related to Autism Assistance Dogs, the rest were related to animal assisted therapy and activities with a range of animals including dogs, horses and dolphins. o Use of assistance and therapy dogs for children with autism spectrum disorders: A critical review of the current evidence (Berry, 2013) included six articles, only two of which related to assistance dogs. 0 Accritical review on the use of service dogs for individuals with autism spectrum disorders and its application in Hong Kong (Lee, 2014) is a university Master’s thesis that was not peer reviewed. The researcher noted
Assistance Dogs Australia Page 5 of 8
inclusion of “grey literature and doctoral theses” in the systemic review, meaning the review was not limited to peer-reviewed journal articles.
Other research included in La Trobe report:
oO
Sentinels of safety: service dogs ensure safety and enhance freedom and well-being for families with autistic children (Burrows Adams & Spiers, 2008) focused on the use of assistance dogs to increase safety for families of children with ASD.
What a dog can do: Children with autism and therapy dogs in social interaction (Solomon, 2010) investigated the impact of service and therapy dogs on communication and social engagement of children and adolescents with autism
Brief report: Do service dog providers placing dogs with children with developmental disabilities use outcome measures and, if so, what are they? (Butterfly, Percy & Ward, 2013) appears to be a mixed-methods online survey of 5 service dog providers. The researchers were assessing whether the trainers noted using such assessments. It is surprising a mixed-methods online survey of only five participants was published in a peer reviewed journal. It is unclear what the sampling methods and statistical analyses used were. Only 17 service dog providers were invited to participate in the online survey.
Effect of service dogs on salivary cortisol secretion in autistic children (Viau et al., 2010) is incorrectly cited in theLa Trobe report as qualitative, as the study did use behavioural measures (semi-quantitative, open ended questionnaires administered to the parents) in each phase of the study.
Service dogs for children with autism spectrum disorder: Child and family experiences (MacKinnon, 2014) is another Master’s thesis and is not peer reviewed.
Peer reviewed articles not included in La Trobe report published before May 2016:
oO
Parents’ perspectives on the value of assistance dogs for children with autism spectrum disorder: a cross
sectional study (Burgoyne, L., Dowling, L., Fitzgerald, A., Connolly, M., J, P. B. and Perry, |. J., 2014)
Experiences of family life with an autism assistance dog (Smyth, C. and Slevin, E., 2010)
Utilizing assistive dogs in integrated employment settings: Multidisciplinary elements to consider for individuals with ASD (Groomes, D. A., Clemons, A., Hulme, S., Kort, K. and Mesibov, G., 2014)
Assistance dog placement in the pediatric population: Benefits, risks, and recommendations for future application (Davis, B., Nattrass, K., O’Brien, S., Patronek, G. and MacCollin, M., 2004)
Benefits of assistance dogs: A review (Sachs-Ericsson, N., Hansen, N. K. and Fitzgerald, S., 2002)
The effect of service dogs on the improvement of health-related quality of life (Shintani, M., Senda, M., Takayanagi, T., Katayama, Y., Furusawa, K., Okutani, T., Kataoka, M. and Ozaki, T., 2010)
Not just a dog: An attachment theory perspective on relationships with assistance dogs (Kwong, M. J., 2010) Psychosocial well-being and community participation of service dog partners (Collins, D. M., Fitzgerald, S. G., Sachs-Ericsson, N., Scherer, M., Cooper, R. A. and Boninger, M. L., 2006)
Service dogs: Facilitating the abilities of children with intellectual or behavioral disabilities (Fry-Johnson, Y. W., Powell, S. and Winokur, D. K., 2009)
The use of service dogs as an adaptive strategy: a qualitative study (Camp, M. M., 2001)
Work or play?: An exploration of the relationships between people and their service dogs in leisure activities (Hicks, J. R. and Weisman, C. J., 2015)
Peer reviewed articles published since La Trobe report released (September 2016) that indicate need for updated report (preferably systematic review) of evidence for autism assistance dogs:
oO
Parenting stress and salivary cortisol in parents of children with autism spectrum disorder: Longitudinal variations in the context of a service dog’s presence in the family (Fecteau, S.-M., Boivin, L., Trudel, M., Corbett, B. A., Harrell, F. E., Jr., Viau, R., Champagne, N. and Picard, F., 2017)
Assistance Dogs Australia Page 6 of 8
0 Impact of Service Dogs on Family Members’ Psychosocial Functioning (Bibbo, J., Rodriguez, K. E. and O’Haire,
M. E., 2019) o. The effects of service dogs on psychosocial health and wellbeing for individuals with physical disabilities or chronic conditions (Rodriguez, K. E., Bibbo, J. and O’Haire, M. E., 2019)
0 The experience of acquiring an assistance dog: examination of the transition process for first-time handlers (Gravrok, J., Bendrups, D., Howell, T. and Bennett, P., 2019)
o Facilitators and barriers to the use of service dogs: an exploratory study using the Theoretical Domains Framework (Lamontagne, M. E., Djossa Adoun, M., Blanchette, A. K., Champagne, C., Johnson, M. P., Vincent,
C. and Routhier, F., 2019) 0. The impact of disability-assistance animals on the psychological health of workplaces: A systematic review (Hunter, C., Verreynne, M.-L., Pachana, N. and Harpur, P., 2019)
-
Thriving through relationships: assistance dogs’ and companion dogs’ perceived ability to contribute to thriving in individuals with and without a disability (Gravrok, J., Howell, T., Bendrups, D. and Bennett, P., 2019)
-
Adequacy of funding for research into autism In 2018, the Australia Government provided close to $4 million in funding to support new research into autism. This funding was distributed across five research institutions, whose projects have focused on finding better methods of diagnosis, treatment and care for those living with autism. When evaluating the six research projects that have received funding, most focus on autism in school-age children. This work is crucial in progressing our understanding of autism, however, there still appears to be a gap in research centred around adult diagnosis, and developing best practice methods for supporting young people’s transition into adulthood, who have been diagnosed with autism.
There is also a significant gap in terms of the level of support given for research into intellectual health issues compared to funding provided for research into physical health issues. From the National Health and Medical Research Council Annual Report 2018—2019°, we can see where NHRMC research funding has been distributed over the past five years:
Health issues 2014-15 2015-16 2016-17 2017-18 2018-19 Arthritis and $22,805,602 $18,795,565 $18,587,314 $17,090,906 $16,753,034 osteoporosis
Asthma $24,200,707 $17,823,657 $14,090,531 $14,630,187 $14,799,985
Cancer $194,856,055 | $173,827,967 | $173,941,646 | $175,843,293 | $177,119,115
Cardi l
Jeon @" | $129,258,827 | $107,299,859 _| $106,093,758 _| $100,220,334 _| $99,207,972
Dementia $33,484,149 $41,431,454 $47,506,067 $55,949,202 $67,923,621 Diabetes $72,298,087 $64,282,295 $60,758,105 $52,898,334 $46,026,444 Injury $62,825,752 $52,659,185 $47,067,086 $46,986,732 $50,745,510
Mental Health | $91,323,923 $75,194,010 $70,229,980 $69,445,289 $72,605,803
Obesity $40,998,383 $30,993,234 $27,565,388 $24,587,731 $22,770,158
As the prevalence of autism continues to increase in Australia, it is essential that more research funding be made
available to support the progression of effective support services for those living with autism.
® National Health and Medical Research Council Annual Report 2018-2019 Canberra: National Health and Medical Research Council, 2019.
Assistance Dogs Australia
Page 7 of 8
Recommendations:
Oo
Increased research funding should be channelled towards developing support services that help young people’s transition into adulthood, particularly support services that enable them to participate in education post-school, and that help prepare them for the workforce.
Further funding is required to support larger pilot projects in the areas of Autism Assistance Dogs,
Educational Support Dogs and Animal Assisted Therapy (in Occupational Therapy & Speech Therapy) to
help demonstrate the effectiveness and long-lasting change these services provide.
Increased funding is required for research into the prevalence of autism within adults, and to develop support services that are effective for their age group.
- Conclusion Assistance Dogs Australia believes that all Australians should have the same access to education, community and economic freedom. With the prevalence of autism increasing, it is essential that effective support services be
developed, implemented and financially supported as part of the National Autism Strategy, particularly in relation to
the ongoing support for young people transitioning through key life stages. Without these services in place, or by not
providing appropriate financial support for effective services currently available, a significant proportion of
Australia’s population will continue to experience disadvantage. In order to create real change for Australians living
with autism, Assistance Dogs Australia recommends:
Oo
Oo 0 0 0
fe)
fe)
The collection of accurate data on the true prevalence of autism in children, adolescent and adult age groups is an essential first step in identifying actual community need.
NDIS funding should be made available for services that provide life-changing support
NDIS should base funding decisions for Autism Assistance Dogs on higher quality evidence
Services need to provide ongoing support, rather than focusing purely on early childhood interventions. Further funding is required for research into autism, particularly in developing and implementing support services that are appropriate for adolescents and adults.
Greater access to mental health support services is essential.
Support service should be free-to-client, making them accessible across all socioeconomic demographics.
Assistance Dogs Australia would like to thank the Senate Select Committee on Autism again for considering our key recommendations and would welcome the opportunity to provide any additional support.
Assistance Dogs Australia Page 8 of 8
ih WO?
Vv
Assistance Dogs
Australia
MRE | ORGANISATIONAL Registered
MEMBER
NDIS provider