Submission
No 144
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM DISORDER
Organisation: The Royal Australian and New Zealand College of Psychiatrists
Date Received: 5 May 2016
Submission S144 Received 05/05/2016 Family and Community Development Committee
Victorian Family and Community Development Committee inquiry into services for people with autism spectrum disorder
May 2016
working with the community
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RANZCP Victorian Branch Committee submission
Introduction
The Royal Australian and New Zealand College of Psychiatrists (RANZCP) is the principal organisation representing the medical specialty of psychiatry in Australia and New Zealand, and has responsibility both for the accreditation of training programs and the administration of examinations of medical practitioners for qualification as consultant psychiatrists, leading to admission to Fellowship of the RANZCP. There are approximately 5,000 Fellows of the RANZCP, including approximately 1,000 Fellows in the Victorian Branch.
The RANZCP Victorian Branch Committee welcomes the opportunity to provide feedback on the inquiry into services for people with autism spectrum disorder (ASD). Psychiatric co-morbidities are common in people with ASD, and psychiatrists have a key role in the assessment and ongoing management of this group. The support needs of people with ASD and co-morbid psychiatric illness can be complex, so ensuring access to appropriate, multidisciplinary services is essential. We therefore commend the efforts of the Victorian Parliament’s Family and Community Development Committee to evaluate the strengths and weaknesses of the system in Victoria.
Key messages and recommendations
- The inquiry into services for people with ASD is welcome, however the RANZCP is concerned that this focus may be to the detriment of people with other forms of neurodevelopmental disorders, who have the same level of impairment, but a less recognised diagnosis.
- Transition periods are times of particularly vulnerability for people with ASD, and clearly and more effective support mechanisms are required to ensure the necessary supports are in place.
- Access to services and supports should be based on level of need and impairment, rather than diagnostic categories or levels of severity based on DSM-5 definitions.
Prevalence of autism spectrum disorder in Victoria
Expanded focus
The RANZCP welcomes the Committee’s inquiry into the prevalence of ASD, however we would encourage expanding the Inquiry’s scope, to incorporate people with neurodevelopmental disorders more broadly. Centring on a specific diagnosis can lead to arbitrary inequalities in access to services and available supports. For example, people with a diagnosis of ASD are currently able to access certain services which people who have the same level of impairment, but not an ASD diagnosis, do not have access to (see for example RANZCP, 2015).
There is no doubt that people with ASD have a range of support needs that require specialist approaches, taking neurodevelopmental, symptoms and mental health profiles into account. The RANZCP emphasises however that this should not detract from the significant number of other neurodevelopmental conditions, including fragile x syndrome, Prader-Willi syndrome, William-Beuren syndrome, Down syndrome and foetal alcohol syndrome. As with ASD, these syndromes require specialised approaches according to the specific profile of neurodevelopmental learning and emotional and behavioural symptoms and characteristics linked to the diagnosis. However, most people with
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neurodevelopmental conditions also share much in common in terms of support needs. For example, there is evidence to show that the provision of evidence-based parent education and skills training programs can promote continuing improvements in the child’s adjustment and reduce parental stress in families with children showing any form of developmental delay (Tonge et al., 2009; Tonge et al., 2006). The RANZCP believes that evidence-based services such as these should be accessed on the basis of need, rather than diagnosis.
Recommendations
- In considering the prevalence and support needs of people with neurodevelopmental disorders, the RANZCP believes level of need and impairment, rather than diagnosis, should be central.
Availability and adequacy of services provided by the Commonwealth, State and local governments across health, education, disability, housing, sport and employment services
Early intervention services
Aspects of the early intervention services available to young children with ASD have been improving, largely due to the increased funding available under the Helping Children with Autism (HCWA) initiative, as well as the introduction of some Medicare Benefits Schedule (MBS) item numbers for psychology/allied health assessment and early intervention services. Improved training of the medical workforce in childhood neurodevelopmental disorders, and in particular ASD, has also contributed to this improvement.
Special school teacher training has also improved, leading to increased expertise available to children with ASD in the classroom. Some dedicated special schools for children with ASD have been established, and the RANZCP identifies that these may be helpful in promoting the educational and social development of some children, however there is currently no evidence that this approach always improves outcomes for children with ASD, or is of more benefit than a broad-based, properly supported program in mainstream or generalist special schools. There is however evidence to indicate that the availability of education aide support and a planned individual learning program for children with ASD are critical elements.
Unfortunately, the existing criteria for supported school programs for children with ASD in Victoria has narrowed, and criteria requires the presence of an intellectual disability and/or significant speech and language delay. This excludes many children with ASD who do no strongly exhibit these criteria, but who nevertheless experience significant impairment linked to ASD, including severe emotional and behavioural problems (Einfeld et al., 2006; Tonge and Einfeld, 2003). Behavioural issues in children with ASD can lead to the development of severe anxiety, associated with social stress, learning problems, bullying and sensory sensitivities. These issues can lead to the child experiencing problems at school, leading to suspension and ultimately exclusion if not managed properly, and ultimately exacerbating the lifelong disadvantage experienced by people with ASD.
Child and adolescent mental health services
People with ASD have a heightened risk of psychiatric and developmental co-morbidities, including intellectual disability (ID), anxiety disorders and other conditions. Severe ASD is usually diagnosed in pre-school aged children, so child and adolescent psychiatrists have an important role in the early identification, diagnosis, assessment and ongoing management of people with ASD, particularly those with more severe or complex presentations (Randall et al., 2016).
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It is essential that children with severe ASD and co-morbidities are able to access child and adolescent mental health services (CAMHS) as required. This necessitates the presence of a highly trained workforce, including psychiatrists with advanced training in child and adolescent mental health. Currently there are shortages and maldistribution in some psychiatry trainee positions, meaning that trainees will encounter difficulty securing the positions they require to complete their rotations. This is particularly the case for child and adolescent psychiatry where previously advanced trainee positions are now largely being taken up by mandatory child and adolescent psychiatry rotations. This issue has significant implications for the future of the child and adolescent psychiatry workforce in Victoria.
The RANZCP highly values the role of the Commonwealth Government’s Specialist Training Program (STP) for its capacity to address this impending workforce issue. The STP enables medical specialist trainees to rotate through an expanded range of settings, supported by Commonwealth funding that is managed by the RANZCP. Out of 179 STP places nationally, 64 are located in Victoria, which is a substantial contribution. STP is currently under review, with guaranteed funding only up until February 2017. The RANZCP strongly supports the extension of funding beyond the current cut-off.
On an ongoing basis, training of the child and adolescent mental health workforce needs to enable clinicians to work with the levels of complexity often present in children with severe ASD and co-morbidities. In particular, service systems that enable the development of specialised skills in neuropsychiatric disability and mental health are required.
Beyond workforce training issues, it is also important to ensure that CAMHSs are resourced at a level that allows for genuine cross-sector collaboration. Children with severe ASD will generally be involved with multiple services, and it is essential that these have the capacity to share information and work together. This includes communication and possibly co-location of CAMHS clinicians, teachers and paediatricians; as well as the time to invest in case coordination, consultation and liaison.
Transition between services
Significant service gaps currently exist for people with ASD transitioning between services and developmental stages. The RANZCP is concerned in particular about the lack of clear and effective pathways for young people with ASD as they move from primary to secondary school, or out of school and into tertiary education or the workplace. There is evidence to show that support and planning through these transitional phases promotes enduring positive outcomes (Tonge et al., 2008).
Adult disability services may lack the specialised skills and training necessary to respond to the symptoms and emotional and behavioural support needs of people with ASD. Victorian research indicates that a significant number of young adults with ASD are unable to access the support services they require (Tonge et al., 2008). In particular, employment services are often unable to provide the level of mentoring and on the job support a person with ASD requires to manage the complex transition into a workplace, even if they have the skills to undertake the work itself.
Furthermore, generalist public mental health services do not always have the expertise available to assess and identify the complicating presence of ASD in adults with mental illness, or alternatively the presence of mental illness in adults with ASD. Co-morbid mental illness and emotional and behavioural disorders are present in 20-40% of adults with ASD, so it is essential that mental health services are able to respond appropriately to this population (Mohr et al., 2005).
Overall, the compartmentalisation of government services means that many people fall through the gaps, and important issues get lost due to the lack of mechanisms for services dealing with health, disability, employment, education and housing, for example, to communicate. People with ASD are also
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often excluded from sports and other community programs due to a lack of understanding of the person’s social, communication and behavioural needs and how to support inclusion.
Recommendations
- Supports for school age children should be made available on the basis of need and level of impairment, rather than diagnosis.
- Maintaining adequate numbers of child and adolescent psychiatry advanced trainee positions is essential for ensuring the CAMHS workforce has the capacity to respond to the needs of children with ASD and complex, co-morbid presentations into the future.
- Services need the capacity to support people with ASD during transitional periods, including moving from primary school to high school, and from high school to tertiary education or employment.
Adequacy of services to be provided under the National Disability Insurance Scheme (NDIS)
Barriers to accessing NDIS-funded services
At this stage the RANZCP is unable to provide detailed feedback on the impact of the NDIS, as implementation is still in the early stages, and many aspects of the scheme are yet to be clarified. However feedback from RANZCP members based in the NDIS Barwon trial site report that a number of children with ASD are being well supported, and that families welcome the capacity to be able to develop an individual plan, tailored for their child’s needs.
Feedback from the trial site does indicate however that services gaps may impede the successful implementation of individual support plans, even when the funding is available. Due to the funding structure of the NDIS, where individual interactions, rather than services, are supported, it may be some time before these service gaps are filled.
Furthermore, families have expressed concern that NDIS services are only available to those with ASD at a level two or three severity, as defined in the Diagnostic and Statistical Manual of Mental Disorders (5th edition) (DSM-5). The RANZCP is concerned that this will exclude adolescents and adults with ASD, who have been diagnosed according to earlier editions of the DSM, and will therefore be required to undertake another assessment. This will necessitate people with ASD and their families accessing specialists to undertake the assessment, incurring the extra costs associated with this, and placing additional demands on clinicians whose capacity is already over-stretched. The DSM-5 specifies that the determination of level of severity should be used for descriptive purposes only, and not to determine eligibility for services (American Psychiatric Association, 2013).
At this time, there is no internationally agreed, gold standard assessment tool which can reliably and validly assess the very general specifiers of severity contained within the DSM-5. This means there is no baseline from which to assess the levels of severity assigned to people with ASD, as per the DSM-5 standards. Given the high level of unmet need in the community, this may risk severity measures being assigned based on eligibility criteria, rather than objective, clinical standards.
The use of the DSM-5 in determining eligibility for the NDIS is an issue that the RANZCP has raised with the National Disability Insurance Agency (NDIA) in the past, noting that people with ASD, reliance on
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one particular diagnostic manual is not appropriate and risks leaving some people at significant disadvantage. The RANZCP recommended instead the inclusion of the DSM-5, the International Statistical Classification of Diseases and Related Health Problems (10th edition) (ICD-10), as well as appropriate clinical and professional knowledge.
Transition to the NDIS
The RANZCP would also welcome more information on the transition arrangements in place to support families to move from existing services to the NDIS. In particular, while we welcome the NDIA’s Early Childhood Early Intervention (ECEI) approach, there are concerns to do with the future of programs such as Better Access and Helping Children with Autism (HCWA). The RANZCP understands that HCWA will eventually be subsumed under the NDIS, however it is not clear if the NDIS will reach the same population, and deliver the same services as HCWA, particularly therapeutic, allied health and parenting support.
Recommendations
- Eligibility criteria for the NDIS, as well as any other service, should not be based on levels of severity as defined in the DSM-5, but rather on level of need and impairment, based on the DSM-5, ICD-10 and clinical and professional knowledge.
- Care must be taken to ensure that children with ASD currently being supported under Better Access or HCWA are not worse off following the transition to the NDIS.
Evidence of the social and economic cost of failing to provide adequate services
When left unsupported, neurodevelopmental disorders including ASD incur very high costs on individuals, families, communities and the economy. These costs are multiple and compounding, and include healthcare costs, as well as the costs associated with curtailed schooling, lack of employment opportunities and socioeconomic disadvantage (RANZCP, 2016).
The RANZCP recognises that funding of specialised mental health and disability services, as well as enhancing employment, education and other support programs would be costly. Nevertheless, we believe that this expenditure should be reconceptualised as an important investment, and one that would offer significant return on investment.
The RANZCP has recently commissioned economic modelling that estimates the annual cost of serious mental illness and substance use disorders in Australia to be $45.4 billion. While a portion of the burden of serious mental illness is not avertable, it is estimated that providing optimal treatment at optimal coverage could reduce the burden of disease by 28% - representing an approximate annual saving of $12.7 billion (RANZCP, 2016). While these figures are to do with mental illness, not neurodevelopmental disorders, they provide an illustration of the strong economic potential of investing in optimal services for vulnerable people, including those with ASD.
Projected demand for services in Victoria
The RANZCP has no response to this item.
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References
American Psychiatry Association (2013) Diagnostic and Statistical Manual of Mental Disorders (5th edition). Washington DC, United States.
Einfeld S, Piccinin A, Mackinnon A, Hofer S, Taffe J, Gray K, Bontempo D, Hoffman L, Parmenter T, Tonge B (2006) Psychopathology in young people with intellectual disability. Journal of the American Medical Association 296(16): 1981-89.
Mohr C, Tonge B, Einfeld S (2005) The development of a new measure for the assessment of psychopathology in adults with intellectual disability. Journal of Intellectual Disability Research 49(7): 469-80.
Randall M, Sciberras E, Brignell A, Ihsen E, Efron D, Dissanayake C, Williams K (2016) Autism spectrum disorder: Presentation and prevalence in a nationally representative Australian sample. Australian and New Zealand Journal of Psychiatry 50(3): 243-53.
Royal Australian and New Zealand College of Psychiatrists (2016) The economic cost of serious mental illness and comorbidities in Australia and New Zealand. Available at: https://www.ranzcp.org/Files/Publications/RANZCP-Serious-Mental-Illness.aspx (accessed 29 April 2016).
Royal Australian and New Zealand College of Psychiatrists (2015) submission to the Senate Education and Employment References Committee’s inquiry into students with disabilities and their families. Available at: https://www.ranzcp.org/Files/Resources/Submissions/4203-President-to-Committee-Secretary-re-Inquiry-i.aspx (accessed 29 April 2016).
Tonge B, Brereton A, Bull K (2008) Life transition problems: Young people with autism spectrum disorders. Project funded by the Victorian Department of Health and Human Services.
Tonge B, Brereton A, Kiomall M, Mackinnon A, King N, Rinehart N (2006) Effects on parental mental health of an education and skills training program for parents of young children with autism: A randomised controlled trial. Journal of the America Academy of Child and Adolescent Psychiatry 45(5): 561-69.
Tonge B, Bull K, Brereton A, Wilson R (2014) Review of evidence-based early intervention for behavioural problems in children with autism spectrum disorder: the core components of effective programs, child-focused interventions and comprehensive treatment. Current Opinion in Psychiatry 27(2): 158-65.
Tonge B, Einfeld S (2003) Psychopathology and intellectual disability: Australian child to adult longitudinal study. International Review of Research in Mental Retardation 26: 61-9.
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