Submission No 136
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM DISORDER
Organisation: Speech Pathology Australia
Date Received: 29 April 2016
Level 1 / 114 William St T 61 3 9642 4899 office@speechpathologyaustralia.org.au
Melbourne Victoria 3000 F 61 3 9642 4922 www.speechpathologyaustralia.org.au
Submission S136 Received 29/04/2016 Family and Community Development Committee
Speech Pathology Australia’s Submission to the Parliament of Victoria
Family and Community Development Committee
Inquiry into services for people with autism spectrum disorder
22 April 2016
The Speech Pathology Association of Australia Limited
ABN 17 008 393 440
Ms Maree Edwards, Chair Family and Community Development Committee Parliament House Spring Street East Melbourne VIC 3002
22 April 2016
Dear Ms Edwards
Speech Pathology Australia is the national peak body for speech pathologists in Australia, representing more than 6900 members (including 1600 Victorian members). Speech pathologists are the allied health practitioners who specialise in treating communication disorders and swallowing difficulties (dysphagia). There are an estimated 1.1 million Australians who have a communication disorder and one million with swallowing difficulties.
Communication and swallowing difficulties can arise from a range of conditions and may be present from birth (e.g., cleft palate, Down Syndrome, cerebral palsy), may emerge during early childhood (e.g., language disorder, stuttering, autism spectrum disorder), or during adult years (e.g., traumatic brain injury, stroke, progressive neurological conditions and head/neck cancers) or be present in the elderly (e.g., dementia, Alzheimer’s disease). Autism Spectrum Disorder (ASD) is a neurodevelopment disorder, which most often emerges in the first three years of life and is characterised by impairments in social-communication combined with restricted, repetitive, and/or sensory behaviours. There is currently no cure for ASD, but evidence-based interventions aimed at addressing the core symptoms of ASD and increasing adaptive behaviour are available.
Speech pathologists are an essential part of the multidisciplinary diagnostic, intervention and support team for individuals with ASD. The level and frequency of involvement of the speech pathologist will vary depending on the severity of the symptoms and whether or not the individual has a co-occurring condition such as Childhood Apraxia of Speech, Fragile-X Syndrome, Attention Deficit Hyperactivity Disorder and/or developmental delay, intellectual disability or mental health condition all of which in themselves result in speech, language and communication impairments.
For many individuals with ASD, speech pathology is essential for them to be able to achieve educational outcomes, enter the workforce, form social relationships and participate in society in Victoria. Involvement with a speech pathologist may occur as part of their intervention program during early childhood, be delivered in the school they attend or they may seek private speech therapy. In Victoria at present, the level of support individuals with ASD are able to access from a speech pathologist is often inadequate. For many it depends on where they live and /or whether or not they are able to afford private speech therapy.
Speech Pathology Australia welcomes the opportunity to provide comment to the Victorian Government’s Family and Community Development Committee’s Inquiry into services for people with Autism Spectrum Disorder.
We preface our comments relating to the areas of interest for the Inquiry with background information about the role of speech pathologists in providing care for people with ASD. We conclude our submission with a set of recommendations for the Committee to consider as part of the Inquiry.
On behalf of our profession and individuals with ASD and their families, we hope that you find our comments and
Yours faithfully
redacted: s47F - Personal privacy
Gaenor Dixon
National President
Contents
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The roles and responsibilities of speech pathologists working with individuals with ASD
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- The prevalence of autism spectrum disorder in Victoria.
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3. The adequacy of services to be provided under the National Disability Insurance Scheme
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4. Evidence of the social and economic cost of failing to provide adequate services
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Recommendations for consideration by the Department
Evidence cited in this submission …………………………………………………… Error! Bookmark not defined.
Speech Pathology Australia Page 3 of 20
Speech Pathology Australia’s Submission to the services for people with Autism Spectrum Disorder
About speech pathologists and Speech Pathology Australia
Speech pathologists are the university trained allied health professionals who specialise in treating speech, language, communication and swallowing problems. Speech pathologists work across the life span with infants, children, adolescents, adults and the elderly with communication and swallowing problems. Speech pathologists undertake a four-year undergraduate degree or a two-year graduate entry Masters degree to be qualified as speech pathologists.
Speech pathologists provide health services in the acute care (hospitals), sub-acute care, rehabilitation and primary care sector (including community health, general practice and mental health services) as well as within other sectors such as disability, residential and community based aged care, education, juvenile justice, prisons and community settings.
Speech pathologists work in both publicly and privately funded services. In recent years, there has been a significant shift in the location of service delivery from a previous majority of government-employed positions to the private sector including private practice, not-for-profit and non-government organisations.
Speech Pathology Australia is the national peak body for speech pathologists in Australia, representing more than 6900 members (including 1600 Victorian members). Speech pathology is a self-regulated health profession through Certified Practicing Speech Pathologist (CPSP) membership of Speech Pathology Australia. Speech pathologists are not required to also be registered through the National Registration and Accreditation Scheme.
About speech pathology diagnosis and treatment
Communication and swallowing difficulties can arise from a range of conditions and may be present from birth (e.g., cleft palate, Down Syndrome, Foetal Alcohol Syndrome, Autism Spectrum Disorder), emerge during early childhood (e.g., language disorder, speech sound disorder, stuttering), or during adult years (e.g., traumatic brain injury, stroke, progressive neurological conditions and head/neck cancers) or be present in the elderly (e.g., dementia, Parkinson’s disease).
Communication disorders encompass difficulties with speech (producing spoken language), understanding or using language (including oral language, reading, spelling and written expression), voice, fluency (stuttering), and pragmatics (the social use of language), or a combination of areas. There is very strong international and Australian evidence that communication disorders negatively affect an individual’s academic achievement, employment opportunities, mental health, social participation, ability to develop relationships, and overall quality of life.
Swallowing disorders affect the ability to safely swallow food or liquids and can lead to medical complications including chest infections/pneumonia. Swallowing difficulties impact on a person’s health and well-being and often lead to social isolation, poor nutrition, medical complications (including choking and death).
Australians with communication and swallowing difficulties span the entire age range and the nature of their difficulties impacts on most areas of life. These people frequently require health interventions and supports that span multiple areas of the health system (including general practice care, acute and sub-acute), community health, the disability and education sectors and mental health services.
The clinical protocols for speech pathology treatment are evidenced based and backed by strong multidisciplinary scientific evidence for efficacy. Clinical protocols for treatment (in terms of session duration, frequency of care, intensity etc.) differ depending on the clinical presentation and diagnosis.
Whilst a speech pathology ‘assessment’ might be a one off session (for an assessment of swallow function for example), the majority of assessments (and in particular diagnostic assessments) may require two, three or more consultations with a speech pathologist. Most treatment options for speech pathology are longer term and will require multiple consultations. For some conditions, there may be particular times in the progression of the disease or condition where speech pathology intervention can be most effective. For example, there is evidence the children with ASD benefit from early, intensive and family-based intervention programs.i
Currently there is limited available data regarding the prevalence of communication and swallowing disorders within the Australian population. Conservative estimates indicate there is in excess of 1.1 million Australians who have a communication disorder and one million who have a swallowing disorder. There is an overlap of incidence between the different types of communication disorders and swallowing disorders, with some Australians experiencing both due to developmental, disease or injury processes (for example, individuals with Down Syndrome or cerebral palsy). It is also clear that these prevalence figures will likely increase exponentially as the population ages.
In recognition of the prevalence of communication and swallowing problems and in accessing speech pathology services in Australia, in 2014 the federal Senate Community Affairs References Committee held an inquiry into the prevalence of speech, language and communication disorders and speech pathology services in Australia. At the time of writing, the Australian Government’s response to the Senate Committee’s recommendations is still forthcoming. For specific information about Autism and speech pathology made by specific organisations, we draw your attention to submissions 22(Autism SA) 165 (Autism QLD) and 172 (Autism Spectrum Australia) to this inquiry at http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Speech_Pathology.
About Autism Spectrum Disorder
Autism Spectrum Disorder (ASD) refers to a group of pervasive neurodevelopmental disorders with onset in early life and characterised by impairments in social communication skills and restricted, repetitive behaviours and/or sensory impairments.ii
Eating and drinking disorders are also commonly observed in individuals with ASD.iii For some individuals the difficulties experienced are related to the characteristics of ASD including sensory sensitivities and restricted and repetitive interests and behaviours.iv
There is currently no cure for ASD. It is a life-long condition and individuals with ASD require support across their life span.
ASD is a heritable disorder in many cases, but with substantial genetic heterogeneity resulting in varied presentations and diverse needs.v There are some similar patterns of behaviour (e.g., all individuals with ASD will have impairments in using or understanding non-verbal communication) but each individual with ASD will have unique skills and varied difficulties. For example, an individual’s communication skills and difficulties may vary across a range of contexts and with a variety of communication partners. It will often be easier to communicate with a family member than with an unfamiliar person. The individual’s needs will also vary and fluctuate across their life span. For example, some individuals with ASD may experience increased levels of difficulty at times of transition (e.g., from primary school to secondary school, from being single to being in a relationship, or when they become a parent).
The severity of difficulties individuals with ASD experience will vary with some individuals showing mild impairments and others having much more severe impairments. Some individuals with ASD have no or limited speech, and require a system of augmentative and alternative communication (AAC) such as manual signing, picture-based communication systems or speech generating devices to communicate. Other individuals with ASD will have speech and language skills within the normal range and their communication deficits will be in understanding language (e.g., they may not understand the subtleties of language and interpret language in a concrete way or literally, making the understanding of jokes, irony and sarcasm difficult). In particular, some may have difficulties using and understanding social communication (e.g., they may engage in one-sided monologues, they may not respond when someone is talking to them or interrupt inappropriately, they may stand too close to others or they may not use appropriate eye contact or gestures).
There are a range of interventions currently available to individuals with ASD and their families, however there is currently no single effective intervention for all individuals with ASD.vi Interventions address the core symptoms of ASD (e.g., improving understanding of language, use and understanding of non-verbal communication) and/or modify behaviours to improve an individual’s quality of life and increase social acceptance. Substantial benefits can be obtained for individuals of ASD and their families across the lifespan by the implementation of appropriate empirically supported interventions.vii
Many individuals with ASD experience associated medical (e.g., epilepsy), learning (e.g., intellectual disability) and mental health (e.g., anxiety, depression, Oppositional Defiant Disorder, Obsessive Compulsive Disorder) difficulties.viii Approximately 80 per cent of children with ASD will have an intellectual disability and many of these individuals will also experience high levels of emotional and behaviour disturbance.ix Individuals with ASD present with more psychiatric symptoms or disorders than the general population.x In early childhood the most commonly experienced mental health concern is anxiety.xi xii
The roles and responsibilities of speech pathologists working with individuals with ASD
Speech pathologists work to address the social communication, behavioural impairments, participation barriers and swallowing or feeding difficulties experienced by individuals with ASD and their families across the lifespan and all life activities.
The pervasive nature, varied and fluctuating presentation and high incidence of co-existing conditions requires that a thorough diagnostic process examines all aspects of development and functioning. The diagnosis process must involve a collaborative multidisciplinary team.
The assessment team most often consists of (at a minimum) a medical practitioner, speech pathologist and clinical psychologist. Other professionals involved may include an occupational therapist, maternal and child health nurse, early childhood educator or teacher or employment support personnel.
Speech pathologists are essential members of the diagnostic team as they are the only profession with the knowledge and skills required to comprehensively assess the core communication, speech, language, social pragmatic and eating and drinking impairments associated with ASD.
Speech pathologists play an important and fundamental role in supporting individuals with ASD and their families as they are often the first professional consulted when parents are concerned about their child’s development and the most frequently utilised service among young children with a diagnosis of ASD. xiii In a recent Australian survey of interventions used by families of preschool children with ASD, the most frequently accessed service was speech pathology, with 43 per cent reporting that they had previously used speech pathology and 62 per cent reporting that they currently used speech pathology.xiv
The speech pathology assessment process involves multiple assessment sessions typically of one hour duration (generally two to three sessions) as the speech pathologist seeks to observe and assess the individual in a range of contexts (for example, clinic, home and/or educational setting) and in a range of communication situations (e.g., structured and unstructured) and with a range of communication partners (e.g., family versus peers versus unfamiliar etc.)
An important role of a speech pathologist in the diagnostic process for individuals with ASD will be the differential diagnosis of ASD and other communication related disorders; including specific language impairment, social (pragmatic) communication disorder, language disorder, speech sound disorder (e.g., childhood apraxia of speech, and specific learning disorder (e.g., dyslexia).
Speech pathologists are also trained to plan and evaluate interventions for individuals with ASD, their families, educators, employers and members of the wider community. Examples of interventions include; attempting to teach an individual one or more new skills; working with an individual with ASD and/or others to arrange the environment to facilitate participation; providing information, resources and counselling to individuals with ASD, their significant others and members of the professional and wider community.
Working with individuals with ASD is considered in scope for the skills of all graduated speech pathologists. In order to work effectively in this area of practice speech pathologists require professional development and supervision. Individuals working for organisations will require workplace training while others working as sole practitioners will require strong links with other disciplines. Just as in other areas of practice, speech pathologists’ managing complex cases will require additional training and experience. Speech pathologists with additional knowledge and skills may consult, mentor, and provide supervision to fellow speech pathologists providing service to individuals with ASD and their families or carers.
Speech Pathology Australia’s responses to the Terms of Reference for the Inquiry into services for individuals with Autism Spectrum Disorder
Speech Pathology Australia has consulted with our members across the country who are leaders in the diagnosis and treatment of ASD and with our members working with Victorian people with ASD in preparing this submission. We offer the following professional views and evidence in relation to the terms of reference for the Committee’s inquiry.
1. The prevalence of autism spectrum disorder in Victoria.
The best available information from Australian based studies estimates a prevalence of Autism Spectrum Disorder nationally to be around 1 in 100.xv The exact prevalence of ASD in Victoria is unknown. Some service-level data will be available from services and rebateable programs funded by governments (such as through the federal government’s Helping Children with Autism Package) or the Barwon NDIS trial site.
What is known regarding prevalence is;
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The rates of ASD diagnosis are increasing with the Australian Bureau of Statistics’ Survey of Disability, Ageing and Carers reporting that 115,400 Australians (0.5 per cent) had a diagnosis of ASD in 2012 compared with 64,600 people in 2009 representing a 79 per cent increase. xvi This trend also appears to be occurring internationally with a recent US estimate recently reporting a prevalence rate of 1 in 68 xvii
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ASD has consistently been diagnosed more commonly in males than in females with a ratio of approximately 4:1. xv
The successful planning of services and provision of support to individuals with ASD relies on the collection of prevalence data; including data on subgroups within the ASD population (e.g., gender
breakdowns, geographic locations, Indigenous and CALD status and the presence of comorbidities including intellectual disability). Until this data is available, it is not possible to be certain that services are being provided where and when Victorians need them.
2. The availability and adequacy of services provided by the Commonwealth, state and local government across health, education, disability, housing, sport and employment services.
In Victoria, there are a board range of professional services and supports available to individuals with ASD. These services and supports are provided across health, education, disability, housing, sport and employment services.
These services are either provided directly by governments (e.g., public hospitals, community health services and Early Childhood Intervention Services) or fully or partially funded by federal and state governments but delivered by NGO’s, not-for-profit organisations or private providers in the community. Fee for service supports are also provided in the community by NGO’s, not-for-profit organisations or private practitioners.
Each of the publically funded services or funding streams has separate eligibility criteria based on;
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age criterion (e.g., Early Childhood Intervention Services offer services only to children aged zero – six years; Adult Mental Health services offer services to adults aged 16 – 64 years);
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diagnosis (e.g., Community Health do not provide a service to children with ASD; Irabina Childhood Autism Services individuals require a diagnosis of ASD for eligibility);
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and geographical location (e.g., Mansfield Autism Statewide Services only provides a service to rural families).
Many disability organisations also prioritise provision of service based on their own “service based” criterion, which may not be publicly disclosed but are a way for the organisation to manage demand with finite resources.
There are some common issues that cross over sectors with regards to availability and adequacy of speech pathology services to people with ASD in Victoria. We have discussed these issues under four themes.
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Availability of services
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Adequacy of services
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Other factors
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Workforce issues
Availability of services in Victoria
Many individuals with ASD do not have access to publically funded speech pathology services where they live in Victoria.
The availability of publicly funded speech pathology services for individuals with ASD in Victoria is inconsistent across the state with many areas of Victoria including outer metro Melbourne (particularly in the Western region), regional and rural areas lacking access to health professionals (in particular speech pathologists) or an adequate number of health professionals. This maldistribution of services and service providers was detailed in a map included in the Centre of Research Excellence in Child Language’s
submission (No 161) to the Senate Inquiry into the prevalence of different types of speech, language and communication disorders and speech pathology services in Australia. This map clearly showed the location of public and private speech pathologists in Victoria mapped against areas of language and cognitive skill vulnerability. Given that individuals with autism are highly likely to have language and cognitive skills deficits it is concerning that this map showed that the areas with greatest need had few or no speech pathology services.xviii
This issue is further compounded by the fact that individuals living in regional and rural areas of Victoria may have difficulty accessing a GP or specialist.xix xx Families with concerns about their child’s language development, who cannot access a GP, may not realise that a speech pathologist will be able to provide crucial early intervention to them and their child. A lack of access to a Paediatrician denies the family fundamental support and may delay a formal diagnosis being made.
Many individuals with ASD have to wait longer than 12 months to access a publicly funded service.
A timely diagnosis and access to appropriate interventions as early as possible is crucial in supporting Victorians with ASD to achieve positive outcomes. Best practice guidelines recommend a waiting period of no greater than three months.xxi
Many families report multiple barriers to accessing timely services including long waiting periods; being referred to the “wrong” service initially and then having to wait before they can access the appropriate service; hitting the age ceiling for eligibility of the service before they have accessed the service; not being aware of what they are able to access.
Members report that despite gains in reducing waiting lists for publically funded services following the launch of the Victorian State Autism Plan in 2009 - waiting times have increased again and now sit (depending on the service) around 12-24 months in 2016. This feedback is further supported by the Autism CRC’s report into ASD diagnosis in Australia, which confirmed that the wait time for an ASD assessment in the public sector in Victoria could be up to 2 years.xxii
Many individuals with ASD have to wait a lengthy period (sometimes up to 2 years) before receiving a diagnosis.
Despite evidence that ASD can be reliably diagnosed at 2 years of agexxiii the average age of diagnosis in Australia has been found to be over four year (49 months) with ASD being most frequently diagnosed at 71 months.xxiv Having to wait for a diagnosis is extremely frustrating for parents who suspect, or know, that their child’s skills are delayed.
It is also concerning given that we know that early intervention improves outcomes for children with ASD xxv and that younger children achieve greater outcomes than children who start intervention at an older age.xxvi The major reason for the delay in diagnosis in Victoria appears to be a gap in the number of publically funded services/service providers (including speech pathologists) compared with need, resulting in the long wait times.
Many individuals with ASD (and their families or carers) incur signification out-of-pocket costs while they wait to access a publically funded service.
Many Speech Pathology Australia members working in private practice in Victoria report working with clients who are waiting to access publically funded services. These families often endure financial hardship to pay for private services. Data from the Autism CRC’s ASD diagnosis in Australia project indicated that the cost of an ASD assessment in Victoria provided in a private sector setting ranged from $500 to $1500. This is particularly concerning considering the lower workforce participation rates and lower family income found in families with children with ASD. xxvii There are many others who go without
essential diagnostic or early intervention while they wait to access a publically funded service because they cannot afford private speech pathology fees.
Many individuals with ASD frequently encounter long waits when transitioning from one service to another.
Many children prior to a diagnosis of ASD will first access a speech pathology service through their local community health centre. They will often have to wait (sometimes up to 12 months) to access this service. If concerns that the child may have ASD are raised by the Community Health speech pathologist, then the child will be placed on the waiting list for an Assessment Team and /or an Early Childhood Intervention Service. Another lengthy wait of between 12 to 18 months will likely follow before they actually receive this specialised service. Members report parents expressing significant frustration at having to wait for each service particularly as they know that early intervention is crucial for their child’s future success.
Many individuals with ASD cannot access the specialist autism specific services they require.
For some individuals with ASD their needs will be complex. They may have a co-occurring intellectual disability and a mental health disorder, or the severity of their impairments may be high. These individuals require the support only available from a specialist autism specific service. Many parents and carers report frustration about not being able to access these services because they do not exist in their geographical location (e.g., autism specific schools). Compounding this problem in accessing specialised autism services is the overlay of clinical complexity found for children from culturally and linguistically diverse communities or indigenous children who require culturally appropriate and specialised autism services.
Many individuals with ASD cannot access both publically and privately funded services at the same time.
It is often necessary, due to their complex needs, for an individual with ASD to access a range of services, including a number of speech pathology services, at the same time. For example, a child with ASD may require support for feeding difficulties, prescription of and support to learn how to use an Alternative and Augmentative Communication device and support to develop understanding of language and non-verbal communication skills. Speech Pathology Australia members report parents being told that they cannot continue to access publically funded services (and that they will be placed at the bottom of the waiting list) if they continue to access private services. Speech Pathology Australia believes that dual or multiple servicing is possible and that no individual with ASD should be prevented from accessing a publicly funded service simply because they are also accessing a private service.xxviii
Many individuals with ASD of primary school age cannot access an adequate amount of service.
The availability of services (including speech pathology) for individuals with ASD, in Victoria, decreases significantly as a child ages. This reduction in the amount of service occurs because of a range of reasons:
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Many of the publically funded services cease providing a service when a child enters school (e.g., Early Childhood Intervention Services)
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Funding to access private services, for example, through the Helping Children with Autism package is no longer accessible or has been utilised prior to entering school;
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Not all students with a diagnosis of ASD meet the current eligibility guidelines for the Program for Students with Disabilities (PSD), which provides individualised targeted funding which schools can use to purchase services.
Speech Pathology Australia provided a submission to the Review of the Program for Students with Disability (a copy of our submission can be provided on request) where we made a range of recommendations that may be of interest to this Inquiry. In particular, we urged the Government to ensure that:
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funding is equitable for all students with disability (including students with ASD) in Victorian government schools,
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identification of students with disabilities not be made based on diagnosis (or severity of symptoms, with only those with severe symptoms receiving support) alone,
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high quality differentiated teaching that is responsive to the students varied and varying needs be offered in all Victorian government schools,
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the regular monitoring of each student’s progress should be undertaken so that the effectiveness of the targeted strategies/intervention may be evaluated and the student’s ongoing needs determined,
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that the Department undertake a project to look specifically at how best to support students with disability (including students with ASD) to manage times of transition (e.g., from year level to year level, between schools and from different levels of schooling), and
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that if special attention is to be given to the support provided to students with autism (and dyslexia) that the SSSO speech pathology workforce and the Association be consulted and/or involved in any resultant activities.
Speech Pathology Australia welcomes the publication of the Review of the Program for Students with Disabilities report and the Government’s response as we can see opportunities to continue to collaborate to ensure that the needs of all students with disabilities (including those with ASD) are met so that they may maximise their learning potential, achieve educational outcomes and a sense of well-being at school and successfully transition to further studies or work beyond secondary school.
Many adolescents with ASD experience a further reduction in access to essential services, particularly in mainstream school settings
Adolescents with ASD are one group that require special attention. A large number of students attending mainstream schools find that as they transition to secondary school they are no longer eligible for individualised funding or they receive a reduced amount of support.xxix This is at a time of significant physical, social and psychological change for the individual. Young people with ASD, by nature of their symptoms, may not seek support or discuss concerns with others. This places them at greater risk of developing mental health conditions.
Not providing services to adolescents with ASD also places them at greater risk of not completing high school and not obtaining work or completing further studies once they leave school. Research shows that individuals with ASD who do not complete high school are at significant risk of not entering the workforce.xxx Every effort should be made to provide services that are tailored to the individual with ASD’s abilities and interests and with an emphasis on keeping them at school and supporting a smooth transition to tertiary education or the workforce.
Many adolescents with ASD do not receive the support necessary for them to transition to further studies or employment once they leave school.xxx
Exact figures for participation of individuals with ASD in higher education or the workforce in Victoria are unknown. International figures range from as low as only six percent to 25 percent of individuals with ASD being employed in the workforce.xxx It is possible, therefore to assume from these figures that the total
number of individuals entering the workforce in Victoria is similarly low and that more can be done in this area.
Individuals with ASD often experience communication and social skills impairments that act as barriers to employment. They may also require a higher intensity of, on the job training, or specific instruction to master skills and how to generalise their skills across a range of contexts.xxxi Research has shown that the components that increase the success of an individualised transition program include; strong parental involvement; a focus on increasing function independence and social competence; provision of access to vocational experiences to increase career awareness; teaching self-management and self-determination and use of evidence based practices.xxxi
Members report that lack of workplace opportunities seem to be compounded by lack of understanding in the community of the unique abilities and strengths of individuals with ASD. It is important that these views be dispelled. Potential employers also need to understand that the difficulties experience by individual with ASD can be addressed and that with support these individuals can be valuable and valued members of staff.
Adequacy of services in Victoria for people with ASD
In Victoria, there are public and private sector services and health professionals (including speech pathologists) who provide high quality evidence based service to individuals with ASD. The issue for many individuals with ASD is not only the availability of the service but the adequacy of the service.
Many individuals with ASD encounter inconsistencies in the approaches used by health professionals to diagnose ASD.
In Australia, there is no standard approach to the diagnosis of ASD.xxii This is despite there being strong agreement, particularly internationally, as to best practice guidelines for ASD assessment.xvii It appears that not all health professionals in Australia are aware of these best practice guidelines or if they are, they encounter barriers that prevented them from adhering to them, one of which we will describe below.
One of the components of a best practice diagnostic process is that it should involve a collaborative multidisciplinary team including at a minimum a paediatrician, a speech pathologist and a clinical psychologist. The Autism CRC’s report into ASD Diagnosis in Australia indicated that sole practitioners rarely collaborated with other professionals to make a diagnostic decision. In some respects, this is not surprising given the lack of standard guidelines and the lack of funding available to support private practitioners to work in a collaborative way. For example, the Medicare Helping Children with Autism assessment item number (82020) can only be claimed for a face-to-face service with the client. Collaboration with other members of the diagnostic team is not funded.
Having a consistent approach to the diagnostic process for ASD supports accurate diagnosis, promotes equity of access and has been shown to increase the parent’s overall level of satisfaction with the process.xxiii
Many Victorians with ASD do to have access to an adequate amount of evidenced based best practice service.
Many parents report being offered short blocks of therapy (e.g., six sessions) by publically funded services with long breaks in between blocks of therapy. Others are asked to choose between more frequent group sessions and less frequent individual sessions. Recent research has suggested that decisions regarding the frequency of therapy offered by a publicly funded organisation are being made on the need to ration services due to long waiting lists rather than best practice evidence. xxxii Many parents of individuals with ASD report having to spend large amounts of money on private interventions to ‘fill the gap’ in publicly funded services.
Many individuals with ASD incur significant out of pocket costs when accessing private speech pathology services
Many families, while they are waiting to access a publically funded service (or in addition to that service), will choose to access private speech pathology services. Most incur significant out-of-pockets costs as they quickly reach the thresholds (e.g., for private health insurance extras cover which is often capped at around $200 per annum for speech pathology) or use the maximum number of rebatable sessions available through Medicare (e.g., 5 services are rebatable, in total, per calendar year for the Chronic Disease Management Program across a range of allied health services). Members report having to console distressed parents who have (a) started the assessment process privately (by accessing the HCWA Medicare assessment items) only to find that they have used their allocation (four in total) and the assessment is incomplete, or (b) have seen the benefits of intervention but cannot continue to access the service because they have used all of the funding streams available to them.
Individuals with ASD with mental health conditions could benefit greatly from working with speech pathologists,xxxiii however, access to speech pathology is not funded through the Better Access to Mental Health program. Members report families being frustrated by this barrier to them accessing the essential services they require for their son or daughter with ASD.
Many families and carers report that government and private health insurance rebates requirements (e.g. only being provided for face-to-face services) are a barrier to them receiving a service or receiving a best practice service
At present, most private health insurers and Medicare only provide a rebate for services provided individually and face-to-face. Members report wishing to provide group therapy or telepractice sessions, both of which have a strong evidence base and have been found to be just as effective as other more traditional methods of service delivery.xxxiv xxxv Providing access to rebates particularly for telepractice would be one step towards providing increased access to services for Victorian’s living in rural locations.
Other factors
Many individuals with ASD report inconsistent knowledge about ASD in health professionals, educators and the wider community.
Despite increasing number of individuals being diagnosed with ASD there still exists a lack of knowledge and awareness of ASD in the community. Members report a diagnosis of ASD being queried by other health professionals or educators. This is especially so for individuals with ASD who do not have a cognitive impairment or do not fit the classic “picture” of ASD symptoms. In schools, students who have often received intensive intervention prior to commencing school may have strong adaptive behaviour and functional language skills. Educators may not be aware that these students will often struggle with higher-level language tasks and literacy learning, critical thinking and interacting socially with their peers at school. They will still require a high degree of support to achieve academically and socially at school as well as maintain a sense of well-being.
Furthermore, as the understanding of ASD has increased over the past decades there has been a subsequent increase in the diagnosis of adolescents.xxxvi This is particularly so for individuals who have not had a history of delayed cognitive or language development. Obtaining a diagnosis and receiving the support required can be a lengthy process further adding to the stressors placed on the individual and their family or carers. Members report often having to spend a lot of time convincing school staff that the diagnosis is accurate rather than focusing on how to support the student. School staff require the knowledge and understanding that diagnosis of ASD does and can occur in adolescence and just because an individual has not received this diagnosis in early childhood does not mean that it is not a possibility now.
Many individuals with ASD find that services both within but particularly across jurisdictions lack coordination and integration.
Members report parents expressing frustration at; having to navigate a complicated and complex service system; being placed on waiting lists; having to retell their “story” each time they see a new professional; encountering barriers that prevent collaboration of health professionals; having to wait for a service when they transfer across from a different service; having to reapply for funding and meet different eligibility criteria when they enter a new service or system; and feeling like they have to fight for every “ounce” of support their child receives.
Many families and carers of individuals with ASD are not aware of the information and advice supports available to them.
Substantial improvements have been made in the range and quality of information and advice supports available to individuals with ASD and their families and carers. Such supports include the Raising Children Network website, ASPECT website and AMAZE website. Despite the range of supports available members report continuing to find families and carers (and some health professionals) unaware of what is available. They also report coming across gaps in information and experiencing difficulties accessing culturally and linguistically suitable information. Work should continue in this area and the Association is very willing to support preparation and dissemination of high quality information to all.
Workforce issues
An appropriately skilled and multidisciplinary workforce is needed in order to provide adequate and effective services to Victorian people with Autism. There are a number of challenges in the current workforce composition that should be considered by the Committee in reform of the ‘system’ of services for Victorian people with Autism. Challenges include:
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A mal-distribution of speech pathology positions across Victoria but particularly in areas of greatest need and in regional and rural locations.
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Insufficient numbers of speech pathologists within publicly funded services to meet the current and future demands of Victorians with Autism.
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Workforce sustainability undermined by time-limited funding of programs. For example, initiatives (e.g., those included in the Autism State Plan) are implemented only to be discontinued when funding runs out or disbanded when there is a change of government.
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Allied health practitioners working with Victorian people with Autism not routinely included in evaluation of services or involved in projects that build the evidence of intervention effectiveness. This compromises the quality of the evaluations but also acts as a barrier to embedding evidence based practice within the sector.
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Speech pathologists working in publicly funded services having little or no access to professional training budgets.
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Speech pathologists working in publicly funded services having limited opportunities for team based training and education
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Speech pathologists in publicly funded service having limited access to clinical supervision from a speech pathologist (and in the case of professionals working with individuals with ASD this would also include limited access to clinical supervision provided by a speech pathologist with advanced knowledge and skills in the area of working with individuals with ASD).
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Limited research into innovative or “non-traditional” models of service delivery.
3. The adequacy of services to be provided under the National Disability Insurance Scheme
The National Disability Insurance Scheme has the potential to be “life-changing” for individuals with ASD and for their families and carers.
Whilst there have been some very positive stories of individuals with ASD having received a level of funding and support that has allowed them to achieve outcomes they could only have dreamed of previously there is still a long way to go.
Speech Pathology Australia has identified a number of risks related to service provision for individuals with ASD, some specific to speech pathology and others related to the broader health profession. These include, but are not limited to:
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Consumers are increasingly calling the Association for advice about how to choose a speech pathologists and what services they might need. Participant “health literacy” training and advice is required to support them to make informed choices about the supports they need.
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In some areas, public services have already “pulled-out” or scaled back the level of service they are providing and there may be a gap in services/service providers as the private and NFP/NGOs establish themselves.
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We have noted a large number of experienced speech pathologists have either left the sector (e.g., retired) or have scaled back the amount of work they are doing (e.g., enter private practice in a part time capacity).
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Many of the speech pathologists entering the disability workforce are new graduates or early career speech pathologists. Whilst they are trained to be able to work with individuals with ASD Speech Pathology Australia recognises that they will require additional training, professional development and supervision to work with this population (and in particular to work with individuals with complex needs).
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Many of the speech pathologists entering the market place are setting up as sole practitioners (as discussed earlier this potentially restricts them from being able to provide best practice to individuals with ASD).
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Many of the speech pathologists setting up private practices have no experience with running a business, and will find the demands challenging and will struggle to afford the costs associated with quality and safety compliance.
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Many of the speech pathologists who setup private practices will exit the profession further adding to already high attrition rates.
Speech Pathology Australia urges the Government, and the NDIA, to liaise with peak professional bodies, such as SPA, to support the successful roll out of the NDIS to all individuals with disability (including those with ASD).
4. Evidence of the social and economic cost of failing to provide adequate services
An economic evaluation of speech and language therapy (SLT) for children with autism undertaken in the UK in 2010 found that for ‘every £1 invested in enhanced SLT generates £1.46 through lifetime cost savings and productivity gains’. The intervention (36 hours of SLT for a year) was costed as £2,430 per
unit and worked on the assumption of there being around 8,800 children aged 2-4 years with autism, resulting in a total estimated cost of £21.3 million per annum. Monetary benefits were then based on cost savings gained by the intervention reducing the numbers of people with autism accommodated in hospital settings and residential accommodation (an estimated total of £31.1 million in savings). Therefore, the results of this cost-benefit analysis showed that SLT used for treating children with autism generates a positive net benefit of £9.8 million per annum or a benefit to cost ratio of 1.46.xxxvii
5. The projected demand for services in Victoria.
With increasing rates of diagnosis of ASD in Australia it is highly anticipated that the demand for services (including speech pathology) for individuals with ASD will continue to increase. In fact, data from the SA NDIS trail site has shown that the most commonly sought service for children accessing NDSI supports is speech pathology. This coupled with the unmet demand discussed earlier makes it imperative that specific emphasis be placed on ensuring that the speech pathology workforce in Victoria is adequate to meet the demand.
Recommendations for consideration by the Department
Speech Pathology Australia recommends that that the Committee consider:
- That the Victorian Government systematically gather, report and analyse prevalence data on the number of Victorian’s diagnosed with Autism; including data on subgroups within this population. Robust prevalence data can then be used for service planning and resource allocation decisions.
- In planning of Victorian Government funded services for Victorians with Autism, appropriate multidisciplinary teams (including speech pathologists) need to be resourced.
- The Victorian Government needs to prioritise initiatives that improved access to services for Victorians with Autism who live in rural parts of the state so that they may have access to high quality evidence based best practice services (including speech pathology).
- The Victorian Government needs to consider eligibility criteria for existing and future services to include innovative models of service delivery (e.g., hub and spoke, telepractice, etc.) that will support increased access to services for Victorians with Autism,
- In order to maximize outcomes (and reduce the risk of people developing co-occurring conditions such as mental illness) it is essential that individuals with Austism have timely access to publicly funded services (including speech pathology).
- Performance criteria for service providers should require waiting times for publically funded services (including speech pathology) to not exceed three months. This may require a short term ‘boost’ in funding and a reconsideration of funding distribution given the implementation of the NDIS.
- There needs to be an increase the level of specialist services (including speech pathology) for individuals with Austism so that they do not incur long waiting periods when transitioning to a specialist service.
- All individuals with Autism who require specialist autism specific services (including speech pathology) should be offered access to such services either in their local area or by other evidence based modes of service delivery (e.g., hub and spoke, telepractice, etc.).
- Individuals with autism should be able to access all the services (both public and private) that they require (even if this means accessing two or more speech pathologists at the same time) to meet their needs. Access to publicly funded services should not be restricted based on co-existing use of private services.
- In order for the Victorian Government to meet its commitment of excellence in inclusive education, all primary and secondary students with disability in Victorian government schools should have access to sufficient high quality evidence based individualised teaching and support services (including adequate support from a speech pathologist).
If Speech Pathology Australia can assist in any other way or provide additional information please contact National Office on 03 9642 4899 or contact Christine Lyons, Senior Advisor Professional Practice by emailing clyons@speechpathologyaustralia.org.au.
Evidence
i Roberts, J. and Prior, M. (2016). “A Review of the Research to Identify the Most Effective Models of Practice in Early Intervention for Children with Autism Spectrum Disorders.”
ii American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders – 5th Edition. Washington, DC: American Psychiatric Association.
iii Twachtman-Reilly, J., Amaral, S. C., & Zebrowski, P. P. (2008). Addressing feeding disorders in children on the autism spectrum in school-based settings: Physiological and behavioral issues. Language, speech, and hearing services in schools, 39(2), 261-272.
iv Goldman, H. (2007). Eating and Drinking Difficulties in Children: A Guide for Practitioners. Journal of Autism and Developmental Disorders, 37(10), 2026-2027.
v Timothy, W. Yu, Maria H. Chahrour, Michael E. Coulter, Sarn Jiralerspong, Kazuko Okamura-Ikeda, Bulent Ataman, Klaus Schmitz-Abe et al. “Using whole-exome sequencing to identify inherited causes of autism.” Neuron 77, no. 2 (2013): 259-273.
vi Speech Pathology Australia (2016). Evidence based speech pathology practice for individuals with autism spectrum disorder Clinical Guideline. Melbourne: Speech Pathology Australia.
vii Mindful – Centre for Training and Research in Developmental Health. (2013). A Guide to Identification, Diagnosis and Treatment of Autism Spectrum Disorder in Victorian Mental Health Services. Melbourne: Mindlful.
viii American Speech-Language-Hearing Association. (2006). Guidelines for Speech-Language Pathologists in Diagnosis, Assessment and Treatment of Autism Spectrum Disorders across the Life Span Retrieved 01/04/11, from http://www.asha.irg/docs/html/gl2006-00049.html
ix Bradley, Elspeth A., Jane A. Summers, Hayley L. Wood, and Susan E. Bryson. “Comparing rates of psychiatric and behavior disorders in adolescents and young adults with severe intellectual disability with and without autism.” Journal of autism and developmental disorders 34, no. 2 (2004): 151-161.
x Bradley, E., Summers, J., Breteton, A.V., Einfeld, White, Paul, et al. “Prevalence of intellectual disability and comorbid mental illness in an Australian community sample.” Australian and New Zealand Journal of Psychiatry 39.5 (2005): 395-400.
xi Kim, J. A., Szatmari, P., Bryson, S. E., Streiner, D. L., & Wilson, F. J. (2000). The prevalence of anxiety and mood problems among children with autism and Asperger syndrome. Autism, 4(2), 117-132.
xii White, S. W., Oswald, D., Ollendick, T., & Scahill, L. (2009). Anxiety in children and adolescents with autism spectrum disorders. Clinical psychology review, 29(3), 216-229.
xiii Thomas, K. C., Morrissey, J. P., & McLaurin, C. (2007). Use of autism-related services by families and children. Journal of autism and developmental disorders, 37(5), 818-829.
xiv Carter, M., Roberts, J., Williams, K., Evans, D., Parmenter, T., Silove, N., & Warren, A. (2011). Interventions used with an Australian sample of preschool children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5(3), 1033-1041.
xv MacDermott, S., Williams, K., Ridley, G., Glasson, E., & Wray, J. (2006). The Prevalence of Autism in Australia: Can it be Established from Existing Data? Australian Advisory Board on Autism Spectrum Disorders.
xvi
xvii Developmental, D. M. N. S. Y., & 2010 Principal Investigators. (2014). Prevalence of autism spectrum disorder among children aged 8 years-autism and developmental disabilities monitoring network, 11 sites, United States, 2010. Morbidity and mortality weekly report. Surveillance summaries (Washington, DC: 2002), 63(2), 1.
xviii https://www.mcri.edu.au/news/senate-inquiry-prevalence-communication-disorder
xix Leveratt, M. (2006). Rural and remote Australia-equity of access to health care services. Australian Health Consumer, 2(2006-2007), 16.
xx Australian Institute of Health and Welfare. (2008). Rural, regional and remote health: indicators of health status and determinants of health.
xxi Baird, G., Douglas, H. R., & Murphy, M. S. (2011). Recognising and diagnosing autism in children and young people: summary of NICE guidance.BMJ, 343, d6360.
xxii Taylor, L., Brown, P.,Eapen, V., Midford, S., Paynter, J., Quarmby, L., Smith, T., Maybery, M., Williams, K. and Whitehouse, A. (2016). Autism Spectrum Disorder Diagnosis in Australia: Are we meeting Best Practice Standards? Autism Cooperative Research Centre, Brisbane.
xxiii Camarata, S. (2014). Early identification and early intervention in autism spectrum disorders: Accurate and effective?. International Journal of Speech-Language Pathology, 16(1), 1-10.
xxiv Bent, C. A., Dissanayake, C., & Barbaro, J. (2015). Mapping the diagnosis of autism spectrum disorders in children aged under 7 years in Australia, 2010-2012. The Medical journal of Australia, 202(6), 317-320.
xxv Reichow, B. (2012). Overview of meta-analyses on early intensive behavioral intervention for young children with autism spectrum disorders. Journal of autism and developmental disorders, 42(4), 512-520.
xxvi Rogers, S. J., Estes, A., Lord, C., Vismara, L., Winter, J., Fitzpatrick, A., … & Dawson, G. (2012). Effects of a brief Early Start Denver Model (ESDM)–based parent intervention on toddlers at risk for autism spectrum disorders: A randomized controlled trial. Journal of the American Academy of Child & Adolescent Psychiatry, 51(10), 1052-1065.
xxvii Bourke‐Taylor, H., Howie, L., & Law, M. (2011). Barriers to maternal workforce participation and relationship between paid work and health. Journal of Intellectual Disability Research, 55(5), 511-520.
xxviii
xxix http://www.education.vic.gov.au/Documents/about/department/PSD-Review-Report.pdf
xxx Holwerda, A., van der Klink, J. J., Groothoff, J. W., & Brouwer, S. (2012). Predictors for work participation in individuals with an autism spectrum disorder: A systematic review. Journal of occupational rehabilitation, 22(3), 333-352.
xxxi Schall, C. M., & McDonough, J. T. (2010). Autism spectrum disorders in adolescence and early adulthood: Characteristics and issues. Journal of Vocational Rehabilitation, 32(2), 81-88.
xxxii Carter, M., Roberts, J., Williams, K., Evans, D., Parmenter, T., Silove, N., & Warren, A. (2011). Interventions used with an Australian sample of preschool children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5(3), 1033-1041.
xxxiii http://www.amaze.org.au/uploads/2013/05/Fact-Sheet-Medicare-Benefits-Information-May-20131.pdf
xxxv Speech Pathology Australia (2016). Evidence based speech pathology practice for individuals with autism spectrum disorder Clinical Guideline. Melbourne: Speech Pathology Australia
xxxvi Seltzer, M. M., Krauss, M. W., Shattuck, P. T., Orsmond, G., Swe, A., & Lord, C. (2003). The symptoms of autism spectrum disorders in adolescence and adulthood. Journal of autism and developmental disorders, 33(6), 565-581.
xxxvii http://www.optimityadvisors.com/sites/default/files/research-papers/45-Speech-and-Language.pdf
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