NDIA Accountability Project

Submission 99 — Samaritans — Select Committee on Autism

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’ ’Samaritans

Services, support and life outcomes

for autistic people in Australia and the

associated need for a National Autism

Strategy

Submission to the Select Committee on Autism

Prepared by Samaritans Foundation

July 2020

Contents

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Introduction

Samaritans is a reg istered charity operating services across many areas of the social sector. In the 2019 financial year, Samaritans provided services to thousands of people in areas including disability support, homelessness, emergency relief, ch ild, youth and family services, gambling and financial counse lling and mental health, among others. Samaritans is an NDIS registered provider and has been operating disability services for 35 years. Samaritans currently operate two Early Learning Centres in the Greater Newcastle Reg ion .

This submission was prepared in response to the Terms of Reference for the Select Committee on Autism inquiry into services, support and life outcomes for autistic people in Australia and the associated need for a National Autism Strategy.

Executive Summary

Samaritans submission provides a reflection on some of the gaps and issues w itnessed from a service provider perspective in relation to the diagnosis of and ongoing support to people with Autism Spectrum Disorder (ASD ).

Samaritans believes that recommendations and actions taken as a resu lt of th is inquiry must prioritise the experiences, wishes and recommendations of people w ith autism. Samaritans supports the cal ls from the Australian Autism All iance, set out in the ir 2019 Federal Election Manifesto 1 , to eliminate barriers for autistic people to accessing NDIS and to establish a National Autism Strategy.

1 Australian Autism Alliance. Federal Election Manifes to. Viewed 6 Ju ly 2020 . http://www. austral ianautismall iance. org . au/wp-content/u ploads/20 19/02/ Australian Autism-Al Ii a nce-F ed eral-E lection-M an ifesto-S um mary web. pdf

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Response to Terms of Reference Diagnosis approaches and barriers Samaritans observes several cha llenges w ith achieving accurate and time ly diagnosis for ASD, including:

  • The ability of professionals to make an accurate and early diagnosis w ithout diagnostic criteria that is reflective of typical behaviours and characteristics of both male and female people with ASD . Diagnostic criteria for ASD must be based on cu rrent research find ings and consider the different ways ASD presents in females com pared to males.

  • Wa iting periods for assessment and diagnosis are lengthy and can be costly .

  • The acceptance of parents that the ir ch ild might need professional assessment and diagnosis. Th is requ ires caring and sensitive conversations with professionals who have a strong understanding of ch ild development. Parents need support to understand the diagnosis and exactly what requires intervention .

  • Diagnosis ensures that a ch ild can rece ive fund ing to support the ir development. For chi ldren under 6 years this can be difficult as any diagnosis is likely to remain with them. Ensuring fund ing is available for early intervention for ch ildren with developmental concerns more broad ly may allow professionals a longer period to work with the ch ild for an accurate diagnosis, w hile ensuring that the ch ild’s development is supported in the meantime.

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The prevalence of autism in Australi a A report by Austra lian Institute of Health and Welfare (A IHW) demonstrates that prevalence of diagnosis increased each year between 2009 and 2015, w ith approximately 1 in 150 Austra lian ’s diagnosed w ith Autism in 20 152 . The Australian Bureau of Statistics (ABS ) reports that in 20 18, 205,200 Australians had autism compared to 164,000 in 20 15 (a 25.1 % increase )3 . It is likely some of the increased prevalence year on year can be attributed to improved awareness4 , new research and cha nges to the diagnostic criteria5 •

Misdi agnosis and under representation of females Observations by resea rchers and prominent clinicians suggest that the re are several factors contributing to this issue including:

Females with autism present w ith behaviours that are diffe rent to those common ly observed in males with autism.

  • The diagnostic criteria for ASD has been developed based on the typical presentation of males with autism, making it difficult to diagnose fema les. Societal and cu ltura l norms around fema le and male behaviours can mean that some of the common behaviours presented by fema les with ASD are not recognised as ASD symptoms. Instead they are considered to just be exaggerated stereotypica l fema le behaviou r or

2 Australian Institute of Health and Welfare, Autism in Australia (Canbe rra : AIHW , 2017). Viewed 29 April 2020, https ://www. aihw.qov.au/reports/disability/autism-in australia 3 Austral ian Bureau of Statistics , 2018, Disability, Ageing and Carers, Australia: Summary of Findings, 2018, viewed 6 Ju ly 2020 , https :/ /www. abs. gov. au/au sstats/abs@. n sf/Latestproducts/ 44 30. 0 Main %20 Features 102018?opendocument&tabname=Summary&prodno=4430.0&issue=2018&num=&vi ew= 4 AIHW , op. cit. , Autism in Australia. 5 Autism Spectrum Australia. Viewed 26 June 2020 , https :/ /www. autismspectru m. org. au/news/a utism-prevale nce-rate-u p-by-an estimated-40-to-1-i n-70-people-11-07-2018

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for some cu ltu res, an expressional of cultu rally acceptable I desirable fema le behaviour6 ,7 ,8 ,9 .

Demand for, adequ acy and efficacy of services Samaritans notes several key issues related to the demand for and adequacy of services, including:

  • Access to fund ing th rough the NDIS is not possible without a diagnosis. Given the long waiting lists and high costs associated with achieving a diagnosis, there can be extended delays to receiving support. Reducing wait times for rece iving a diagnosis wou ld greatly improve outcomes for people with ASD and ensure that chi ldren are supported in their development as early as possible. Before a diagnosis is rece ived the re is little in the way of formal or informal support available. People with ASD and mental health co-morbid it ies such as anxiety face additional barriers to accessing the right support as having the ir mental illness recognised as re lated by the NDIS can be difficu lt. NDIS Early Childhood Early Intervention (ECEI ) services are only available to 6 years of age. Early intervention studies generally include ch ildren from O to 8 years w ith consistent evidence that early intervention services for this cohort w ill improve w hole of life outcomes. Children between 6 and 8 yea rs old are missing out on services through the NDIS.

  • The introduction of the NDIS and inclusion of ECEI in NDIS plans means that early intervention services have become a type of therapy

6 Autism Awareness Australia. Viewed 2 July 2020, https :/ /www. autismaware ness. co m. au/ cou I d-it-be-autism/auti sm-and-q i rl s/ 7 Sza lavitz , Maia, Autism - It’s Different in Girls, Scientific America, 1 March 2016 , https :/ /www.scientificamerican.com/articl e/auti sm-it-s-d iffe rent-i n-q iris/ 8 Attwood , Tony , The Pattern of Abilities and Development of Girls with Asperger’s Syndrome. Viewed 2 Ju ly 2020 , http://www.tonyattwood.com.au/books-by-tony m/arch ived-papers/80-the-pattern-of-abi I ities-a nd-deve I opment-of-q irls-with asperge rs-synd ro me 9 National Autistic Society [UK] . Viewed 2 July 2020, https :/ /www. autism. org. u k/a bout/what-is/gender. aspx

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service , which limits the ir ability to look holistically at the needs of the ch ild . The re are no longer services outside of the NDIS that are funded to offer advice and support to famil ies, or to early learning centres, w hen the re are questions about a ch ild’s development. A gap has emerged for disability generalists with strong ch ild development knowledge and understanding who can advise on where the ch ild is at and offer play-based learning opportunit ies.

  • There is a lack of know ledge and skills within the education system around early chi ldhood development. Teache rs should have a basic understand ing and strategies that will ensure all ch ildren can be engaged in their lessons. While special education teachers can be a va luable resource they are not routinely employed by schools, and a more holistic and rounded approach is needed to support child development.

Interaction between services There is currently disconnection between Commonwealth , State and Local Government services which creates gaps in some areas and duplication in others. System level changes are required to enable government and non government services to work collaboratively to respond to each person and their individual desires , needs and goals. Improving connectivity and relationsh ips between services can be achieved in various ways, includ ing :

co-location of services. cross-skilling of professionals and frontline staff to improve early identification and referral. dedicated case coord ination w ith skilled coord inators who cover w hole of life planning and work with each person to coord inate across all services they encounter. electronic systems that improve the capability of individuals with ASD and services to colla borate with each other.

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A National Autism Strategy

A National Autism Strategy may be the appropriate vehicle to deliver system reform through a structured framework which :

  • Contains national targets and outcomes that are set by and for people w ith ASD .

  • Improves access to and reduces wait times for assessment and diagnosis.

  • Incorporates research and the establishment of best practice diagnostic guidelines and support models, with research find ings and subsequent recommendations robustly tested w ith people with ASD prior to fu ll implementation.

Funding for research into autism A research framework should be clearly defined in the National Autism Strategy. It should identify priority areas for research , establish overarching principles and guidelines for all research proj ects and provide coordination for the distribution of fund ing .

Other related matters The introduction of the NDIS has changed the focus of early intervention services into specialised therapy services. These models were previously incred ibly helpful to fam ilies w ho had concerns for the ir chi ld’s development. Wh ile the specialised knowledge available th rough early intervention therapies is important, th is transition has left a gap in generalised child development w hich means that there is far less support available to fam ilies prior to rece iving a diagnosis.

Supported playgroups (which are currently funded through the federal Department of Social Services and the Department of Education in NSW) offer families with ch ildren under 6 yea rs some support in this area.

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Recommendations

Samaritans recommends that a National Autism Strategy be developed w ith consultation, refinement, and endorsement from people with ASD . Some areas observed by Samaritans that might be considered in the strategy include:

  1. Review of fund ing for ECEI services to align to best practice research, ensuring that no ch ild is left behind in their education as a resu lt of funding gaps.

  2. Establishment of national diagnostic criteria based on best practice research .

  3. Strategies and systems to improve connectivity and coord ination between people with AS D and their service providers are explored and impl emented, reducing burden on people w ith ASD and the ir fam ilies and carers, as well as reducing duplication and addressing service gaps. 4 . Education systems support early ch ildhood development and ensure that teachers have appropriate skills and support.

  4. Improve availability of generalist supports for holistic early childhood development, such as supported playgroups, that can support fam ilies prior to diagnosis.

Authorised by : Brad We bb - Chief Executive Officer Authored by : Emma Granger - Executive Officer

Contributors: Sonia Fow ler - General Manager Child, Youth and Family,

Julie Pearson - Community Services Manager and Coordinators of

Samaritans Early Years Services.

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