WHOLE-OF-GOVERNMENT SUBMISSION TO THE SELECT COMMITTEE ON AUTISM
The Western Australian (WA) Government has a long-standing commitment to supporting people with autism spectrum disorder (ASD), their carers, families and specialist service providers.
With the introduction of the Australia-wide National Disability Insurance Scheme (NDIS), the State Government is partnering with the Commonwealth Government and other stakeholders to ensure the success of the Scheme in WA. This includes working collaboratively on refinements during the transition and ensuring continuity of supports for people with disability.
Not all people with ASD will be eligible for the NDIS. It is recognised that the nature of ASD means that people vary in their strengths and needs and while some may use specialist disability supports, they will also have significant engagement with mainstream services. As such, this submission on behalf of the WA Government incorporates input from across agencies.
a. Current approaches and barriers to consistent, timely and best practice autism diagnosis
The WA Government has made the health and wellbeing of children in the early years a priority by ensuring that more Western Australian children get the best start for the greatest chance of future success. An accurate ASD diagnosis at the earliest opportunity is critical for the provision of appropriate supports and services.
If a child is already accessing services in the public health system, they can be referred to the Child Development Service (CDS) or the Department of Communities (Communities) for an assessment. Although there may be a waiting period, services are provided free of charge. The CDS operates within the WA Child and Adolescent Health Service as part of its community health delivery. The CDS provides a range of assessment, early intervention and treatment services to children with developmental delay or difficulty that impact on function, participation and/or parent-child relationships.
Communities has a long-standing diagnostic assessment function associated with eligibility for disability services. Communities provides developmental, neuropsychological and cognitive assessments for children through disability services and child protection functions. The department’s Neurodevelopmental Disability Assessment Service is a multidisciplinary team with expertise in the identification of neurodevelopmental disability, with a focus on intellectual disability and ASD. Communities does not provide ASD diagnostic assessment services to adults. Assessment resources are prioritised for children to maximise the developmental outcomes that can be achieved through early intervention.
These Government services are based in the metropolitan area. Across WA, the State’s geographical characteristics present challenges for service delivery, including its large land area, fluctuating regional populations and diverse demographic and service system profiles across the regions. There are further challenges in remote
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and very remote areas and where there is a need for culturally appropriates services for Aboriginal people. Cultural barriers and norms may interface with the social and communication elements of ASD and on families’ knowledge and perception of service systems and their help-seeking behaviour.
Over the past five years, there has been close to double the demand for ASD assessments by Communities’ diagnosticians – 439 in 2015 compared with 817 in 2019. This may, in part, relate to the NDIS rollout in WA. The Scheme requires evidence of permanent disability to meet the access criteria to become a participant, as well as information about the functional impact of disability to support the planning process. The WA public health system has experienced increased demand for more detailed clinical input to support NDIS access requests, planning and reviews, particularly for people with co-occurring mental health conditions and/or complex support needs.
To build capacity to meet demand within publicly funded services, WA Government agencies have attempted to redistribute resources, however these strategies have been limited by workforce issues. There are not enough suitably trained and experienced ASD assessors to meet the current demand. Where demand outstrips service capacity, the wait times for assessments may fall outside of international best practice standards.
The scarcity of clinicians in the local workforce and a lack of visiting services is particularly an issue in the state’s rural, regional and remote locations, which include approximately 274 remote Aboriginal communities1. Families in regional and remote WA are more likely to rely on government services for an assessment and ASD specific intervention pathways may also be limited by thin markets that often cannot support specialist providers. This has resulted in a heavy reliance on Perth based public diagnostic clinicians travelling to rural and remote areas to provide assessment services.
Technology to deliver health care remotely has benefits for patients unable to access face to face services, however it is yet to be shown that ‘telehealth’ is effective as a setting for ASD diagnostic assessments. At this stage, as telehealth assessments are not well supported by research or recognised as best-practice, they do not provide a near-term solution for regional and remote areas2,3. It is recommended that the Committee consider existing and future resourcing to investigate the efficacy of telehealth approaches.
Attempts to build capacity in regional and remote areas should also consider that some studies have found that government services are typically more robust in diagnostic assessment and less likely to ‘upgrade’ a diagnosis compared to the private sector. Diagnostic ‘upgrade’ which is giving a diagnosis when the person does not meet the full criteria, has been identified amongst clinicians in the academic
1 Government of Western Australia Regional Services Reform Unit: Stats and facts. Retrieved from https://regionalservicesreform.wa.gov.au/p/stats-and-facts 2 Reese, R. M., Jamison, T. R., Braun, M., Wendland, M., Black, W., Hadorn, M., … Prather, C. (2015). Brief Report: Use of Interactive Television in Identifying Autism in Young Children: Methodology and Preliminary Data. Journal of Autism and Developmental Disorders, 45(5), 1474–1482. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4405409/ 3 Reese, R. M., Jamison, R., Wendland, M., Fleming, K., Braun, M. J., Schuttler, J. O., & Turek, J. (2013). Evaluating interactive videoconferencing for assessing symptoms of Autism. Telemedicine and E-Health, 19(9), 671–677. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3757538/
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literature4,5. There is a strong case for the continued provision of government ASD diagnostic services to ensure best practice standards and avoid over-diagnosis.
An accurate diagnosis informs the types of support and interventions that are most suitable for an individual. There are also expectations in the community that a diagnosis will enable access to formal supports and services. Having a diagnosis is often pivotal in accessing funded supports such as disability allocation funding in the WA public school system and reasonable and necessary NDIS supports. In this context, there is a risk of assessments erring on the side of diagnosing ASD when individuals do not fully meet the criteria.
Incorrect diagnoses can have a negative impact in the community by diluting the usefulness of ASD as a diagnostic label and placing greater pressure on resources. For individuals, a misdiagnosis may mean that their needs and behaviours are misunderstood, and the wrong interventions and referral pathways are initiated. Conversely, people with ASD and their representatives have raised concerns through the WA Health and Disability Services Complaints Office about the impact of diagnostic assessment on access to NDIS funded supports. These consequences highlight the importance of accurate diagnoses.
The WA Government recommends that the Committee considers inclusive practices and cultural competency in diagnosing and supporting people with ASD. Around 30 per cent of Western Australians were born overseas and Aboriginal people account for almost 4 per cent of the WA population6.
State Government agencies recognise that there are limitations in the use of best practice ASD tools and protocols with Aboriginal people and that there are conflicting views amongst clinicians on balancing gold standard assessment principles with culturally appropriate responses. This area warrants further exploration to encourage the development and implementation of culturally sensitive ASD diagnostic tools and intervention pathways with Aboriginal people. It is also important that Aboriginal people and people from CALD backgrounds have ways of understanding ASD in their own cultural context.
Better diagnosis, understanding and intervention is likely to benefit groups in the community experiencing poorer outcomes. There is potential for the proposed Strategy to contribute to broader responses aimed at improving the health and wellbeing of Aboriginal people and the over-representation of Aboriginal adults and children in WA’s and Australia’s criminal justice systems.
In the justice system in WA, an assessment for an adult with suspected ASD prior to sentencing may be funded, if specifically requested by the Court, however there are
4 Rogers, C. L., Goddard, L., Hill, E. L., Henry, L. A., & Crane, L. (2016). Experiences of diagnosing autism spectrum disorder: A survey of professionals in the United Kingdom. Autism, 20(7), 820–831 5 Taylor, L. J., Eapen, V., Maybery, M. T., Midford, S., Paynter, J., Quarmby, L., Smith, T., Williams, K. & Whitehouse, A. J. O. (2016). Diagnostic evaluation for autism spectrum disorder: A survey of health professionals in Australia. BMJ Open, 6(9), 1–8. https://doi.org/10.1136/bmjopen-2016-012517 6 HealthInfoNet, A. I., Burns, J., Drew, N., Elwell, M., Harford-Mills, M., Hoareau, J., … & Trzesinski, A. (2019). Overview of Aboriginal and Torres Strait Islander health status 2018.
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various contact points within the system that provide an opportunity for screening and referral for an assessment. This also presents an issue in determining the prevalence of ASD among those who have contact with the criminal justice system in WA. The WA Department of Justice is developing policies for adult prisoners with disability to improve referral and access to appropriate assessment at the point of their reception into custody.
The availability of diagnostic assessments outside of education, disability services and public health settings is limited and opportunities for adults seeking a diagnosis, more so. Historically, Communities has not provided ASD assessments for adults or children aged over 13, with childhood assessments prioritised due to the importance of early intervention in accessing disability services. There are also few psychiatrists and psychologists in the public sector trained to undertake adult autism diagnosis and deliver treatment services for those with co-occurring mental illness and neurodevelopmental conditions.
A non-government autism service in WA offers a diagnostic clinic with no-cost assessments restricted to eligible individuals aged 13 to 30. Older adults must generally find suitably qualified clinicians in the private sector who can offer a fee for service diagnostic assessment, as the Medicare Benefits Schedule only applies to children under 13. This can be time consuming and costly but without a diagnosis, access to treatments, therapies and supports is likely to be limited.
The lack of diagnostic, treatment and support services for adults poses risks such as higher prevalence of mental health issues, difficulty in gaining and maintaining employment as well as potential adverse outcomes in the justice system. Consideration should be given to improving funded diagnostic options and ways to support individuals with autism through this process, as well as services for people with co-occurring mental health concerns.
d. International best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity
In WA, the standard for autism assessment has historically been set by the WA Autism Diagnosticians Forum, which is made up of representatives from public and private sectors. The CDS works closely with Communities and the Western Australian Country Health Service to agree on common assessment standards and as such can provide flexible multidisciplinary assessment services.
The lower rates of ASD in WA compared with the rest of Australia may reflect the rigorous approach of WA Government services which adhere to international best practice standards.
The release of the National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia (Guidelines) in October 2018 sets a minimum standard, rather than a nationally standardised approach. The breadth of diagnostic practice that is deemed acceptable in the Guidelines enables clinicians to determine the standard they will adopt for a diagnostic assessment. In practice, this has the potential to contribute to variability between clinicians and across jurisdictions.
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Relaxing the current requirements for an ASD diagnosis in WA to align with the Guidelines may result in a move away from international best practice standards, including a multidisciplinary team approach7,8,9. There is a possibility that the rates of ASD diagnosis in WA could increase significantly and lead to poorer outcomes for misdiagnosed individuals. The WA Government remains committed to rigour in diagnostic assessment so that the right supports are provided for the best outcomes.
f. The interaction between services provided by the Commonwealth, state and local governments
Within the State Governments provision of social housing, tailored housing options for people with ASD are being explored in WA. People with ASD are a diverse group requiring a variety of housing options that support access to services and amenities and connect them to social and employment opportunities. Most will access housing through the mainstream housing system, including social and affordable housing options. For adults with ASD living in independent housing there is no dedicated funding model or ownership structure identified beyond the mainstream waitlist process to access social housing. In WA, the Community Disability Housing Program (CDHP) provides long term rental housing for people with disability and/or mental illness who require ongoing support services. A redevelopment project under the umbrella of the CDHP will create independent living arrangements for families with adult children with autism spectrum conditions.
A small number of people with ASD with complex behaviours may be eligible for robust housing under NDIS Specialist Disability Accommodation (SDA). In WA, SDA is still in the early stages of implementation and the State’s role is yet to determined. The WA Government is currently working with the National Disability Insurance Agency (NDIA) to create a joint agreement that will prioritise NDIS participants in urgent critical need of an SDA assessment. This is likely to be a key strategy that stimulates new SDA market supply for NDIS participants.
The educational attainment for people with ASD is a priority. The WA Department of Education (Education) provides targeted funding for students with disability through the Individual Disability Allocation (IDA). From June 2015 to June 2019, there was a 58 per cent rise in students with ASD funded through the IDA, increasing from 4,176 to 6,613.
Education also provides specialist ASD programs and interventions. The agency undertook a cost-benefit analysis to establish evidence-based programs, informed by research which demonstrated that two years of intensive behavioural intervention prior to the age of five saved in excess of US $1 million across a child’s lifespan. As a result, Education developed Early Intensive Intervention Programs (EIIP). The EIIP is a structured learning program for students with ASD in kindergarten and pre-
7 Whitehouse AJO., Evans K., Eapen, V., Wray, J. A national guideline for the assessment and diagnosis of autism spectrum disorders in Australia. Cooperative Research Centre for Living with Autism, Brisbane, 2018. 8 Falkmer, T., Anderson, K., Falkmer, M., & Horlin, C. (2013). Diagnostic procedures in autism spectrum disorders: A systematic literature review. European Child and Adolescent Psychiatry, 22(6), 329–340. https://doi.org/10.1007/s00787-013-0375-0 9 Le Couteur, A., Haden, G., Hammal, D., & McConachie, H. (2008). Diagnosing autism spectrum disorders in pre-school children using two standardised assessment instruments: The ADI-R and the ADOS. Journal of Autism and Developmental Disorders, 38(2), 362–372. https://doi.org/10.1007/s10803-007-0403-3
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primary years and focuses on developing skills to assist students in their transition to Year 1.
Between 2017 and 2020, Education established 16 new Specialist Learning Programs for students with ASD with complex support needs across schools in WA. These programs are designed to cater for students who can access age-appropriate curriculum but are disengaged due to social, emotional and/or behavioural challenges attributed to ASD. In the Australian context, the Specialist Learning Programs are unique as they are located in mainstream schools; use a highly structured integration of evidence-based strategies such as positive behaviour support alongside age-appropriate curriculum; the participation of school-based staff in a comprehensive development program; as well as the eligibility criteria and kindergarten to Year 12 nature of the program, with exit option points.
People with ASD may benefit from approaches in the justice system that support them through the process and link them to services. WA’s Intellectual Disability Diversion Program (IDDP) Court aims to address the over-representation of individuals in the adult criminal justice system who have a diagnosed intellectual disability, cognitive disability and/or ASD. The program works toward outcomes proportionate and appropriate to the charges and circumstances of the offence and to the person’s impairment. The focus is on identifying undiagnosed disability and providing access to positive behaviour support with the goal of preventing further contact with the criminal justice system.
Under the Guardianship and Administration Act 1990 (WA), delegated guardians from the Office of the Public Advocate provide advocacy in the best interests of a represented person with ASD in accordance with that person’s wishes to the extent possible, however they may need to act differently in the person’s best interests. As part of their advocacy and decision-making, specialist service providers may be engaged by delegated guardians to assist represented persons to develop their personal skills including self-advocacy.
The Western Australian Mental Health, Alcohol and Other Drug Services Plan 2015-2025 recognises the need to provide support and treatment to individuals with ASD and co-occurring mental health issues. There is little quantitative data available on people with ASD requiring clinical mental health services and this impacts on future service modelling and capacity building. People with ASD should also have equitable access to the same type and quality of mainstream mental health services as others in the community. National consideration of policy levers and resourcing to improve mental health service responses for people with ASD through the proposed Strategy or other mechanisms such as the Medicare Benefits Scheme would be welcomed by the WA Government.
The WA Mental Health Advocacy Service provides an important advocacy option for people with ASD and a co-occurring mental health condition particularly in relation to promoting the person’s rights with hospital treating teams. Mental health advocates operate in accordance with the person’s wishes as enshrined in the Mental Health Act 2014 (WA).
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g. The adequacy and efficacy of the NDIS for autistic people
The NDIS is one of the nation’s largest social policy reforms and a welcome platform to provide funding and services that improve the lives of people with ASD. It is encouraging to note according to the 2019-20 second quarter NDIS data for WA, in 95 per cent of access decisions, people with autism were found eligible. The data also shows a cumulative total of 1,456 people in the autism disability group accounting for 35 per cent of the total WA cohort, the highest of any other disability group. The NDIS also has an Autism Advisory Group among its sector reference groups, in recognition of the complex and changing needs of people with ASD across the lifespan.
While the implementation of the NDIS represents a significant positive change there is ongoing work required to improve participants’ experience. In 2018-19, complaints lodged with the WA Health and Disability Services Complaints Office by people with ASD and their representatives focused largely on the transition from state-funded specialist disability services to the NDIS and the costs of services purchased or provided with NDIS funding.
ASD assessment for adults is a significant gap in the community. Without a diagnosis, individuals face barriers to accessing and articulating between services for coordinated and streamlined supports. For patients with co-occurring diagnoses and/or complex support needs, NDIS eligibility and planning processes can be protracted, particularly where individuals do not have adequate diagnostic evidence and information about the functional impact of disability. This can also impact on mainstream service systems. For example, there may be an increased load on hospital services where delays in discharge occur due to the time taken to access the NDIS. Individuals may experience an increase in behaviours of concern triggered by these longer stays in hospital settings.
The NDIS market-led model offers participants a greater choice of disability service providers to deliver their supports. While existing specialist providers in WA are highly regarded, at this stage in the transition there are not enough NDIS providers with the capacity and expertise to deliver all the appropriate services and for people with ASD and complex support needs across the state. This poses a potential risk to NDIS participants with ASD and the providers’ staff, particularly for individuals with behaviour support needs. A significant adverse outcome could result in participants being admitted to hospital, exited from services by providers or encountering the criminal justice system. There is an important role for the NDIS Quality and Safeguards Commission in ensuring competent and appropriately qualified providers deliver services to NDIS participants with ASD as WA transitions to the Commission’s jurisdiction on 1 December 2020.
The prevalence of mental health conditions among people with ASD is greater than in the general population. Aligned with the person-centred approach, the NDIS planning process should consider secondary psychosocial disability when determining reasonable and necessary supports.
WA is at an earlier stage in transitioning to the NDIS than most other states and territories and Early Childhood Early Intervention (ECEI) partners have been
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established relatively recently in WA, during the first half of 2019. The implementation of the NDIS offers unprecedented opportunity for people with ASD to access services and supports, however the rollout of the Scheme is not complete, and the provider market is still developing in WA. This presents some challenges in evaluating the effectiveness of the Scheme for Western Australians with ASD and in differentiating potential issues that relate to policies and Scheme design and those relating to the transition process.
A lack of services funded by the NDIS to build an individual’s capacity to advocate for themselves, may result in a greater number of guardians being appointed to advocate on their behalf. Further consideration may need to be given to the provision of specialised supports and funding to enhance the self-advocacy skills of people with ASD.
There is uncertainty about the role NDIS funded services will play in meeting the needs of prisoners, detainees and victims of crime with ASD. Greater clarity is required on the types of supports that are likely to be available in a prison or detention setting. It is important that comparable NDIS processes can be carried out in justice settings, such as supported planning for people with developmental disability. Information sharing is crucial to support an individual’s transition from prison. This may be the difference between an individual being released from prison on bail or parole and remaining in custody which has financial implications to the WA Government. It is anticipated that the introduction of Justice Liaison Officers in WA will address these issues to some degree and improve service coordination, particularly for prisoners leaving custody. Justice Liaison Officers provide a single point of contact for workers within the state justice system to coordinate support for NDIS participants in youth and adult justice systems.
It would also appear that the ability of the NDIS to support people with complex support needs, may be impacted by the capacity of planners to understand the interface with legislation that may relate to an individual’s transition from prison. For example, the Dangerous Sexual Offenders Act 2006; and Criminal Law (Mentally Impaired Accused) 1996 Act. This understanding is needed to ensure that decision making timelines are met and sufficient NDIS plan information is available to decision makers.
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m. Any bill that relates to matters within the scope of this inquiry that is referred to this committee
In WA, work is underway to develop and introduce a Bill that will repeal and replace the Criminal Law (Mentally Impaired Accused) Act (CLMIA Act) 1996. The CLMIA Act centres on the management of people with mental impairment in the justice system. Mental impairment is defined as mental illness, intellectual disability, acquired brain injury or dementia. In respect of the question of mental fitness to stand trial, ASD has been accepted as a mental impairment.
The decision for a new Bill comes from the long-term recognition of the CLMIA Act being deficient in its management of people with mental impairment in the justice system. The introduction of the new Bill will not only fulfil a 2017 State election commitment but also most importantly provide for best practice management of this vulnerable group of people.
Concluding comments
People with ASD share the diverse characteristics of the communities in which they live. The development of a national strategy should reflect this and aim to meet the needs of people across a variety of environments and circumstances.
The Committee needs to consider barriers to diagnosis and support for people living outside metropolitan areas and in unique situations such as custodial settings, as well as people from culturally and linguistically diverse backgrounds.
Timely and accurate assessments are crucial as a gateway to specialist services, including the NDIS. All Australian Governments are significantly invested in the NDIS and WA recognises that national consistency in diagnosis is important to avoid inequity of access to services.
Maintaining consistent, high-quality assessment processes that offer tools for culturally safe and inclusive practice are key to ensuring that people can gain access to the supports they need through the NDIS and other service systems. Strategic workforce development to bolster expertise, particularly in thin markets should be considered.
Importantly, capacity building in mainstream services will also safeguard equitable access and outcomes for people with ASD across life domains. A comprehensive approach to improving mental health services and supports for ASD should be a primary consideration.
Building opportunities for people with individual needs across the ASD spectrum to participate in work, study and recreation and to enjoy the best possible outcomes and quality of life should be paramount in developing a national approach.
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