Submission
No 143
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM DISORDER
Organisation: The Royal Children’s Hospital Melbourne
Date Received: 4 May 2016
Submission S143 Received 04/05/2016 Family and Community Development Committee
Submission to the
“Inquiry into service for people with autism spectrum disorder”
This report was written by Professor Katrina Williams with experts from a number of professions and departments (as listed), based at the Royal Children’s Hospital, and working for one or more of the organisations that form the Melbourne Children’s Campus (Royal Children’s Hospital, University of Melbourne and the Murdoch Children’s Research Institute) in clinical care, research, or as service directors.
Professions
Child and Adolescent Psychiatry
Early intervention experts
Occupational Therapy
Paediatrics
Psychology
Speech Pathology
Departments
Adolescent Medicine
Centre for Community Child Health
Developmental Medicine
General Medicine
Mental Health, including staff employed by Child and Adolescent Mental Health Services
Key individuals
Ms Charmaine Bernie; Dr Daryl Efron; Prof Sharon Goldfeld; Dr Ric Haslam; Dr Susan Kermond; Dr Deb Marks; Dr Catherine Marraffa; Dr Tamara May; Dr Tim Moore; Ms Bernadette O’Connor; Dr Ken Pang; Dr Jenny Proimos; Assoc Prof Gehan Roberts; Ms Frances Saunders; Assoc Prof Jill Sewell; Ms Michele Spreckley; Ms Fiona Zandt.
Summary of key points
What is autism spectrum disorder?
Autism spectrum disorder (autism) is one of a group of neurodevelopmental disorder. Children and young people with autism have difficulties and differences in social communication and restricted and repetitive behaviours and interests however the type and severity of these problems can vary from one child to the next. Autism also commonly coexists with other neurodevelopmental disorders, such as attention deficit hyperactivity disorder (ADHD), intellectual disability and learning disorders, and also with mental health problems. As a result of their difficulties and differences children and young people with autism have limitations of activities and participation in the community.
How is autism diagnosed?
Diagnosing autism requires skilled professionals such as paediatricians, psychiatrists, psychologists and speech therapists who can understand the strengths a child has as well as the difficulties and differences they are experiencing in a developmental context that takes in to account their age and other abilities. Their ability to function as well as any activity limitations and challenges for their participation in the community should also be assessed.
Access to quality diagnostic services is variable in the state and often inequitably distributed with difficulties for regional children and those unable to access private services. There is also an artificial disjuncture between diagnostic and intervention services, fracturing the system even further.
Identifying autism
Autism is identified at different ages and via different pathways for many reasons. Heterogeneity and associated neurodevelopmental, mental health and neurological problems are the major drivers to different age of identification. The different type of services used by children and young people at different stages, for example community health surveillance in the preschool years, is another. While we strive to identify problems early aiming to ameliorate them through effective intervention and supports, there will always be a wide range of the ages of identification of autism.
Is the prevalence increasing?
The prevalence of autism in Australia is approximately 1-3% of the population of children and young people. The prevalence of diagnosis of autism has increased because more children are recognised, identified and diagnosed today. It is possible that funding arrangements that require a diagnosis for entry to services have contributed to an increase in diagnosis of autism.
What is best management?
Children and young people with autism require a responsive, family-centred team-based approach that purposefully considers needs across the health, disability and education sectors. There is emerging evidence for some social communication interventions, especially in the preschool years, described in a report prepared for the National Disability Insurance Scheme (NDIS).
Children and young people with autism and their families require the same sort of support that is needed for all children with other disabilities. This means adapting the environment to meet the needs of the child, not the other way round; a real but necessary challenge for schools and the community.
The parents and carers of children and young people with autism have high stress levels and mental health needs. They require appropriate and accessible support and mental health services to
minimise the impact of these problems and to allow them to support their children and participate fully in society.
The role of the National Disability Insurance Scheme
The NDIS aims to support children needing early intervention services prior to school entry and also children and young people who need lifelong support. Some elements of how children access early intervention are still being developed, with signs that there will be an option for entry prior to diagnosis. An autism specific early intervention report is now available and the NDIS are developing the implementation strategy. It is hoped NDIS will provide support for the needs of parents/carers and siblings, but whether it will be able to support all children with autism is still uncertain, with funding decisions likely to be linked to activity and participation limitations.
The future in Victoria
It is possible for Victoria to better service the needs of children with autism and their families. We could build on the existing infrastructure, such as early childhood, hospital and community health, and learn from existing successful state-wide services, like the Victorian Paediatric Rehabilitation Service, to supply a more coordinated and equitable approach to the delivery of diagnosis and intervention services. This approach would facilitate the establishment of a Centre of Excellence that could support workforce, training and evaluation needs . “Choice and control” will be less important to families if they can access excellent care locally and know there is ready access to additional expertise when it is needed.
Research should remain an integral element of any strategy in the future. Victoria has globally renowned expertise in neuroscience and a reputation as a biomedical research hub. It can drive research to better understand where there is most need based on prevalence, causation, accurate surveillance and diagnosis, most effective interventions and management that will improve outcomes for individuals with autism and their families.
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What does the Royal Children’s Hospital provide?
The Royal Children’s Hospital (RCH) works in partnership with the University of Melbourne and the Murdoch Childrens Research Institute, forming the Melbourne Children’s Campus. On one site, across these three organisation, excellence in in clinical care, research and education for children with Autism Spectrum Disorder (autism) comes together. We provide:
Clinical Care Services at the RCH span identification, diagnosis, early intervention and ongoing management until the age of 18 or school leaving. Our services support and provide interventions for the learning, behavioural, developmental, physical and mental health needs for children and young people, and their families. We are deeply embedded in communities and work closely with primary care. We playa vital role in care coordination and expert advice, including a new role in developing service networks for transition of care for children with autism and behaviour, mood or thought disorders.
Training The RCH is involved in training university students, hospital and community based professionals across health, education and disability and all relevant disciplines. We have a particular capacity for clinical training, and use online and in-person approaches. We also provide education for parents and carers (referred to from now on as parents) of children and young people with autism. Training spans identification, diagnosis and management. We provide content to the Raising Children Network about autism and other neurodevelopmental diagnoses.
Research RCH, with its campus partners, undertakes laboratory to clinical care and population health research, which embeds translation with discovery and ensures important questions are being addressed. We are involved in research that estimates the prevalence of autism, explores possible causes, assesses identification and diagnostic accuracy, evaluates interventions using best methods and seeks to understand the outcomes for children who are diagnosed with autism, including their quality of life and the mental health and well-being of their families. We are also involved in research that brings together qualitative methods and health economics to develop and evaluate best organisational models of care for a non-government organisation (NGO) disability service provider.
Colla borations RCH works with Victorian, national and international collaborators. For autism research our university collaborators include La Trobe University, Deakin University, RMIT, University of NSW, University of WA, Macquarie University, The Telethon Institute, Griffith University, University Medical Centre Utrecht (the Netherlands) and Newcastle University (UK). We are major contributors to evidence synthesis in autism, including Cochrane Collaboration systematic reviews, both as authors and editors. We are “in-kind” contributors to the Living with Autism CRC working on projects in Program 1 (early years) and Program 2 (school years). We are members and past office-bearers of the Australasian Society for Autism Research (ASfAR). We collaborate with NGOs including Aspect, Autism SA, Irabina, Noah’s Ark and Yooralla.
Advocacy and Policy At a national level, RCH staff were consultants to the National Disability Insurance Agency for early intervention for autism, are members of the Australian Advisory Board on Autism Spectrum Disorders, and are key founding members of the Australian Autism Alliance, an alliance of national advocacy, service providers, lived experience and research organisations. In Victoria, we have been on the steering committee and consultants to the Review of the Program for Students with Disability. We work with education, community health, disability and early intervention services to improve the care of children with autism.
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What is Autism Spectrum Disorder?
Autism spectrum disorder (autism) is a group of neurodevelopmental disorders with difficulties and differences experienced in social communication. Restricted and repetitive interests and behaviours must also be present. The difficulties and differences experienced limit activities and participation in the community. Autism is currently diagnosed using criteria found in either mental health classification systems, such as the Diagnostic Statistical Manual of Mental Disorders (DSM-5, under the Neurodevelopmental Disorders section) [1] or disease classification systems, like the International Classification of Disease (ICD) [2].
There is substantial overlap between autism and other neurodevelopmental disorders. Children with autism are much more likely than children without autism to have other neurodevelopmental disorders, including attention deficit hyperactivity disorder, intellectual disability, language disorders, learning disorders and some movement disorders. There is also substantial overlap and increased risk of mental health problems, like anxiety, and co-occurrence of neurological disorders, like epilepsy. For each individual child with autism at least one of these problems is more common than not, and will contribute to their functional difficulties and activity and participation limitations [3,4]. It is also known that development for most individuals with autism is different from very early in life, indicating that the pathway to autism is similar to other different neurodevelopmental outcomes, like intellectual disability and severe communication disorders.
Autism and all of the neurodevelopmental, mental health and neurological problems associated with it are due to differences in brain development that result in differences in neural connections and neurochemical processing. The biological basis of autism is strongly genetic. Using currently available techniques genetic differences can be identified in approximately 25% of individual with autism [5] and it is likely that more underlying genetic differences will be found as next generation genetic techniques become available for clinical care. Another pointer to the genetic basis of autism is high heritability, especially for twins. Biological “insults”, like low oxygen supply or poor blood flow, during early brain development can also contribute to changes that lead to autism and other neurodevelopmental differences. Likely, but still not proven, is that some individuals with a certain genetic make-up who experience a biological “insult’ are more prone to changes in brain development that lead to autism.
How is autism diagnosed?
Best practice for diagnosis of autism is outlined in the National Institute for Health and Care Excellence (NICE) guidance. NICE is an international leader in producing clear recommendations, based on the best available evidence [6]. As provided to the National Disability Insurance Service (NDIS) report about early intervention services [7] diagnosis
“requires children to be assessed by a paediatrician or a child and adolescent psychiatrist, a psychologist and a speech pathologist and for a consensus diagnosis to have been reached in accordance with existing classification systems . …….Also recommended is consideration be given to detailed profiling of strengths and difficulties, beyond what may be needed for making a diagnosis, to enable tailoring of intervention and management strategies. If DSM-5 is used, the severity of ASD symptoms and level of functioning should be specified along with the presence of co-morbid conditions.”
Diagnosis also requires information about abilities and behaviours from more than one setting, sufficient information to be sure that observed behaviours and difficulties are not
due to an intellectual or primary communication problem, and that environmental causes of the difficulties or behaviours, as well as alternative medical diagnoses, have been excluded.
Function, activities and participation
Autism, like other neurodevelopmental disabilities, can also be thought of in terms of the International Classification of Function Framework (ICF; see Figure 1) [8].
Figure 1. ICF Model of Wise Gleave Disability Framework [8].
Health condition
(disorder or disease)
^
/ \
/ \
/ \
/ \
/ \
v v
Body Functions <---> Activity <---> Participation
& Structure ^ ^
/ \
/ \
v v
Environmental Personal
Factors Factors
Contextual factors
This framework involves assessment of function, activity and participation, and is used in conjunction with diagnosis. In an ideal world the ICF framework and the diagnostic framework work hand-in-hand to deliver the care and services that individuals and their families need.
Autism is heterogeneous
A famous saying in the autism world is “if you’ve met one person with autism, you’ve met one person with autism”. This speaks to the diversity and differences in strengths and difficulties that are included under this diagnosis. Variation exists in the:
- types of difficulties and behaviours that are part of the diagnosis
- severity of difficulties and behaviours
- associated diagnoses or problems, for example whether an individual is also intellectually disabled, has epilepsy and is highly anxious
- types and severity of problems over time, according to developmental stage and age
In “Understanding Autism. The Essential Guide for Parents” [9] four invented cases are presented to bring to life the types of children and young people who can be diagnosed with autism. Hundreds of different children and young people can be created through different combinations of the features presented in those four individuals and families. They will all have different life journeys and experiences based on their abilities, strengths and difficulties, and also because of the different family, school and community environments in which they live.
Autism was once thought to be a universally severely disabling condition. It is now widely accepted, however, that many individuals with autism can have important areas of skills and aptitudes, and can greatly contribute to society if their differences are respected and acknowledged. Intervention, not only to teach individuals the skills they need to participate fully in mainstream society, but to also teach society ways of respecting and promoting diversity, is essential. This concept, known as ‘neurodiversity’ is now in common use in the lexicon of autism [10].
Identifying autism
Autism is identified at different ages and via different pathways for many reasons. Heterogeneity and associated neurodevelopmental, mental health and neurological problems, as described above, are the major drivers to different age of identification. The different type of services used by children and young people at different stages is another.
Historically children who presented early were more likely to have more severe functional impairments, but this has changed in recent years. Identification in the very early years (<3) is usually because of failure to progress through developmental milestones or because of difficulty managing behaviours. Increased identification at this young age has been made possible by: (1) increased awareness by parents and others in the community, (2) increased awareness and training of maternal and child health nurses and general practitioners and (3) developmental surveillance systems.
The majority of children are diagnosed between the ages of 3 and 6 years during which time they present with delayed communication and unusual behaviour. Social communication may be identified early as part of the presentation or become apparent later when communication and behavioural problems are found to be hard to address and differences in interest and engagement with peers becomes more apparent. Maternal and child health nurses, general practitioners, and child care/preschool professionals play important roles in identification for this age group, either as part of formal developmental surveillance systems or informal observations in environments with greater social demands and opportunities to compare to peers. Following identification, there is commonly a community-based paediatrician and/or allied health therapist involved in assessment that assists with diagnosis.
In recent years an increasing number of young people are identified in the primary and high school years. This change coincides with an increased awareness of social communication and behaviour problems in children and young people with normal or superior intelligence (see also prevalence section below). During primary and high school years social demands become more complex, and more is expected in regard to self-organisation. In addition, communication skills are increasingly required for all academic pursuits. In the later years of schooling identification of autism often follows referral for anxiety or conduct problems, or for behaviours that are similar to the early stages of schizophrenia. Identification is usually by school staff or parents seeking mental health services.
Current diagnostic services
Assessment of children with neurodevelopmental problems, including children who will be diagnosed with autism, is currently driven by a need for diagnosis. This diagnosis imperative has been developed because of diagnostic criteria being used for access to funding or services, such as the nationally funded program, Helping Children with Autism (HCWA) and school based funding. As such a well-intentioned but non-the-less perverse incentive for diagnosing autism (and some other named disorders eligible for Better Start funding) has occurred. This has unintentionally led to an inequitable approach to service delivery that has worsened as prevalence has risen.
Ideal assessment, as conducted by many services, provides a profile of a child’s strengths and weaknesses, in such a way that difficulties and differences may be identified across a wide range of neurodevelopmental domains. These include physical ability, problems with hearing and vision, communication, language and learning, mental health, and atypical behaviours, as well as assessment of developmental/intellectual ability. However, In Victoria, and elsewhere in Australia,
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today not all children diagnosed with autism have the recommended assessments prior to diagnosis [11, 12]. Often this is because the services that are needed to provide these assessments are not available in time to meet the arbitrary cut-off dates for service or funding schemes that require a diagnosis, as described above.
Diagnosis of autism is provided by publicly available services, such as child and adolescent mental health services, and community and hospital based public health services. Within Child and Adolescent Mental Health Services there is a network of state-wide regionally based services that developed as autism assessment teams and today provide comprehensive assessments. In regional areas, where staffing is very limited, these services provide a safety net for the most vulnerable families. In metropolitan services they often act as a tertiary level service. A further group of state-funded diagnostic services has grown within community mental health services, as a result of children presenting with psychological problems who have autism underlying their difficulties. Community health and hospital based diagnosis and assessment teams have also formed to cater to unmet need, like the Paediatric Program at Melton Health (http://www.djhs.org.au/allied-community-health/paediatrics-at-djhs/paediatric-program.html).
Diagnosis is also provided by private paediatric, psychology and allied health services, and by some universities and NGOs. Even with private health and other fee-for-service diagnostic services, public services are unable to meet demand. Many services have long waiting times and waiting times are worse in regions with less public services available, and/or higher child populations, creating further inequity.
What families need is ready access to the right level of service for consideration of their child’s neurodevelopmental and behavioural or mental health problems once these have been identified. They also need to be able to access highly specialised services when these are warranted and to move seamlessly between the different levels of service they require. Movement between identification, diagnosis and assessment, and intervention and management services should also be seamless. The current system does not cater to these needs.
Is the prevalence of autism increasing?
The diagnosis of autism is increasing in Australia with 1.5-2.5% of children in the Longitudinal Study of Australian Children reported by their parents to have been diagnosed [13]. This prevalence is similar to other reported international data [14]. There is conjecture about the cause of this increase. Some research points to greater awareness in the community about autism types of behaviours (traits) which have always been prevalent but not attributed to autism. For example, high quality international data suggests that there is an increase in diagnosis with autism traits staying constant while diagnosis increases, as illustrated by Figure 2 [15].
Figure 2. Annual prevalence of autism in Child and Adolescent Twin Study in Sweden, national patient register (NPR) and NPR diagnoses in Swedish twins. [15]
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Other evidence has shown diagnostic drift, from a diagnosis of intellectual disability toward a diagnosis of autism, and also an increase in diagnosis of individuals with normal or superior intelligence since the publication of Hans Asperger’s article in English in 1981 [16, 17]. In Victoria the substantial increase in children diagnosed with autism within the Victorian Program for Students with Disabilities (PSD) suggests that funding availability has resulted in diagnostic drift.
To know the prevalence of autism in Victoria, in a way that will allow services to be provided to those who need them, we need more data. Underpinning the need for data is a need for excellence in services that identify, diagnose and manage individuals with autism and strong connections between them, particularly when connections across sectors, such as health, disability and education, are required.
It is possible that in Australia the emergence of diagnosis-specific funding packages and services has contributed to more children being diagnosed with autism. The provision of services based on functional need, as intended by the National Disability Insurance Service (NDIS), more on this below, may result in a fairer distribution of resources for children with developmental disabilities including autism.
What is best management?
Best management at all ages involves active engagement between professionals and the parents or individual with autism, all working together as a team toward agreed goals. As described above management often needs to be coordinated across different sectors (health, education and disability services), across private, public and NGO funded services and within sectors, between different disciplines and specialties, like paediatrics, mental health and therapy services. This process should be well coordinated for families, so their experience is of well communicated and consistent care. Unfortunately this is often not achieved.
Best management at all ages also includes adaptation of the environment and the community to the needs of people with autism. At a human level there is a growing voice stating the need for respect for the concept of ‘I am different, not less’. Many people with autism, perhaps started by Temple Grandin, are now contributing to this discussion. Like people with physical disabilities, people with autism can also benefit from adaptations to the built environment, including quiet rooms and alternative communication devices.
Most evidence about effective interventions exists in the early childhood intervention period. Recently published guidance, created for the NDIS, is available about evidence-based best practice for early intervention for children with autism [7]. The NDIS is currently developing an implementation approach based on this guidance. There are many similarities between best practice recommendations for autism and recent guidance about early intervention [18], with convergence of all underpinning principles and practices, and differences only in details that are autism specific.
There is emerging evidence about specific interventions to address social communication difficulties, and also for interventions for associated problems across the school aged years. Further information is available in “Understanding Autism. The Essential Guide for Parents” [9], which takes a problem based approach. More detail about specific interventions can also be provided as required.
There is evidence of the increased burden of stress and mental health problems for families of children with autism [19]. It is possible that this is secondary to providing care for a child with additional needs or could be due to family risk of mental health problems, related to the genetic nature of autism [20, 21]. Either way, additional support and access to mental health services when needed are likely to change each child and young person’s environment in ways that optimise their
outcome and allow their family to be productive in the community. In Victoria today Positive Behaviour Support Workshops (free for parents of children and young people aged 6-25 years) assist many families. In the past the ACT Now “Pre-schoolers with Autism” education program was helpful for parents of pre-schoolers. Still more is needed to achieve adequate and appropriate supports to ensure optimal mental health and well-being of parents and siblings. As parents are crucial to their child or young person with autism’s well-being, the potential benefits of appropriate level and availability of services seems a vital part of intervention and management that aims to maximise function and participation. We recommend consideration of support for all families of children with autism, beyond their engagement in the child’s interventions.
What is needed to optimise education?
Recommendations for the Program for Students with Disabilities in Victoria, including specific recommendations for children with autism, have recently been released. Included are some much welcomed recommendations for:
- a regional approach to facilitate local connections that are needed to optimise learning and minimise secondary problems, like disengagement.
- improving knowledge of the teaching workforce and their access to expertise about autism.
- team around the child to include all the expertise that is needed, regardless of discipline
- personalised, strength-based approaches.
The government’s response to these recommendations is now available (http://www.education.vic.gov.au/Documents/about/department/PSD-Review-Response.docx).
Additional efforts by schools, as part of the community, to understand difference and to make adaptations to environments, as described above in the section “What is best management?” is also needed.
How will NDIS decide which children with autism will receive help and how will it work?
Initially the NDIS will cater to individuals with autism in two different ways:
- early childhood intervention (preschool years)
- disability support packages for those who need them
Early childhood intervention
As discussed in the section “What is best management?” two reports by the NDIS about Early Intervention, one for all children and one specific to autism, have recently been published [7, 18]. During the development of these reports and from feedback from trial sites the NDIS heard that entry to funded early intervention needs to be different to the allocation of packages. This is because:
- at entry to early intervention parents/carers have not had time to understand their child’s differences and needs
- during the early years, when early intervention can be most effective, diagnosis is not straightforward, even when neurodevelopmental differences are apparent because
- developmental trajectories are not predictable
- assessment relies on observations of behaviour rather than assessment of ability, which is more accurate after the age of five
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- early intervention, by its nature, provides functional, rather than diagnostic, assessments to understand what is needed. If early intervention is withheld until the diagnosis is confirmed and planning completed the net effect will be duplication and delay of essential services
- some children with early difficulties will not require ongoing disability supports, and therefore a disability framework is not optimal for them or their families.
As a result a new approach to entry for young children with, or at risk of, neurodevelopmental difficulties is being developed. This approach will allow entry with up to twelve months of early intervention without a formal diagnosis or NDIS plan in place. The details of this approach are not yet available but the outline can be found at http://www.ndis.gov.au/sites/default/files/documents/Research/NDIA-ECEI-Approach-1.pdf. We support this approach as an opportunity for providing timely intervention to children and families who need it without the need for a diagnosis until the neurodevelopmental trajectory is clearer. If a diagnosis of autism is appropriate for children who enter this NDIS pathway, then referral to health services will also be needed, and the information available from early intervention providers will be able to be used as an integral part of the assessment process.
When a diagnosis of autism is made we anticipate that the NDIS will implement the Early Intervention report [7]. Barriers exist to children in all regions of Victoria receiving the level and type of services that are recommended. We anticipate the NDIS will take in to account training needs, innovation in services to reach all areas of Australia, and the opportunity for research and evaluation that are also included as recommendations in this report.
Support packages
When deciding support packages for individuals with autism, we understand that the NDIS plans to adopt a standardised assessment tool that will assess activities and function, and that it will make decisions about funding packages based on the level of severity of functional impairment, as well as diagnostic information and expert advice about disability support needs. We support this decision.
What an ideal service in Victoria might look like
Autism is one of a range of neurodevelopmental disorders experienced by Victoria’s children. Victoria has a wealth of health, education, community and disability services delivered across the private and public sector, with a mixture of state and federal funding mechanisms.
What are the gaps?
The current gaps/issues are:
- a lack of connection between services from different sectors
- a lack of a clear care pathways based on need to facilitate movement between primary, secondary, tertiary and quaternary services within sectors when needed
- inequality in the availability and distribution of services (in general fewer services in areas of relative socio-economic disadvantage / highest need / non-English speaking backgrounds), with the current services not meeting demand, even with more advantaged families able to access privately funded services. Maldistribution of public services will be similar to the distribution reported in a submission to Australian Senate’s Community Affairs Reference Committee ‘Inquiry into the Prevalence of different types of speech, language and communication disorders and speech pathology in Australia’, available at http://www.speechpathologyaustralia.org.au/lobbying-and-advocacy/national-inquiry. This inequity is exacerbated in rural and regional areas.
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- very little publicly funded access across Victoria to specialist paediatric expertise in neurodevelopmental problems, including medical and allied health professionals. Apart from a few clinics at RCH, one or two clinics at Monash Children’s, two clinics at Sunshine Hospital, and a few community health services employing paediatricians, there is minimal opportunity to have a child assessed from a paediatric developmental perspective, hence long waiting lists and significant out of pocket expenses that only well-off parents can afford. This would not be tolerated for children with significant medical illnesses.
- unanticipated effects of specific funding for children with autism, which has driven the workforce out of public facilities into the private sector, creating opportunities for profit for some providers and high out of pocket costs for many families. The net result has been less access to publicly funded services, including severe problems accessing public diagnostic services for school-aged children
- expertise at a distance valued above regional connections, contributed to by point 2 & 3 and creating some new problems. For example multiple different service providers for early childhood intervention attending a child care to see different children all at the same time.
How could these gaps be filled and issues minimised?
Rather than creating autism specific services, we propose a state-wide system for neurodevelopmental problems that supports regional hubs. Such a service could build on existing similar services and be embedded in the existing infrastructure, such as early childhood intervention, disability and hospital and community health services. An existing successful example of a state-wide service with similar goals and workforce is the Victorian Paediatric Rehabilitation Service, which provides services for children with brain and spinal injury, and also children with physical neurodisability. In creating this service Victoria has invested in building local expertise (private and public) and service capacity, with opportunities for visiting (in-person or by telehealth) tertiary and quaternary expertise, contribution to state-wide research and training and opportunities for innovation. A similar hub and spoke model with specialist community paediatricians and allied health practitioners collaborating with community based health, disability and education professionals could be developed for the wider range of significant neurodevelopmental problems, of which autism is a prime example.
We envisage that “choice and control” (a main goal of the NDIS) will be less important to families if they can access excellent care locally and know there is ready access to additional expertise when it is needed. We see a major opportunity for cost savings for families who do not need to travel long distances for services. We see the “knock-on” effect of increased relationships between health, education, community and disability services locally, and also with adult services, for older individuals with autism and for support for their families. Investment in all of these services will be needed, but expenditure minimised if local relationships are formed, so that expertise is shared and built on.
Training
As described above, building a well trained workforce and ongoing opportunities for professional development, through teamwork and formal education, will be crucial to the success of any services developed to improve the lives of individuals with autism. This has been recognised by both the disability and education sector. Good work in this domain is occurring, with national reach and locally, but is currently poorly coordinated with the risk for inconsistent messages. RCH is committed to training and education, with a particular role in training paediatricians and allied health
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professionals, and with its training partners has access to state-of-the art training expertise and technology. We’re ready to join in a more coordinated effort for training.
Research
In the long term, improving services for people with autism will be underpinned by ongoing research to better understand (1) where there is most need based on prevalence, (2) causation, (3) accurate surveillance and diagnosis, (4) most effective interventions and (5) management that results in optimal outcomes for individuals with autism and their families. Although there are significant research efforts into autism across various institutions within Victoria, they are fragmented. Establishment of a state-wide Victorian autism research network would not only increase collaboration and coordination, facilitate research (especially by aiding subject recruitment), and assist with dissemination of research findings, but also build upon Victoria’s globally renowned expertise in neuroscience and its reputation as a biomedical research hub (http://www.invest.vic.gov.au/opportunities/medical-technology-and-pharmaceuticals/victorias-strengths-in-health). RCH is currently involved in all types of research necessary to build a better future for individuals with autism, and is delivering clinical care and developing population health strategies, in a way that can make a difference. We are already working with colleagues across Victoria and are ready to be part of a strategy that supports these endeavours in a more coordinated way.
References
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- World Health Organization, International classification of diseases (ICD). 2012.
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- National Institute for Health and Clinical Excellence, Autism in under 19s: recognition, referral and diagnosis. 2014.
- Roberts, J. and K. Williams, Autism spectrum disorder: Evidence-based/evidence-informed good practice for supports provided to preschool children, their families and carers 2016, National Disability Insurance Agency (NDIA).
- World Health Organization, International classification of functioning, disability and health: ICF. 2001: World Health Organization.
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- Silberman, S., Neurotribes: The Legacy of Autism and the Future of Neurodiversity. 2015: Penguin.
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- Randall, M., et al., Autism spectrum disorder: Presentation and prevalence in a nationally representative Australian sample. Australian and New Zealand Journal of Psychiatry, 2015: p. 0004867415595287.
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