Chapter 4

Diagnosis

… early diagnosis of FASD can improve the overall life outcomes for the individual and enable families and carers to access disability support services otherwise unavailable to them.1
4.1
FASD is a complex disability, and diagnosis is difficult, time-consuming and expensive.2 It involves a multidisciplinary assessment, health professionals with specialist skills, and regard for potentially complex family histories and a range of possible neurodevelopmental impairments.3
4.2
This chapter discusses some of the persistent obstacles to FASD diagnosis and early intervention and the consequences of failing, delaying or misdiagnosing a person. It also considers a range of initiatives and suggestions for improving access to diagnostic services.

Diagnosing FASD

Existing diagnostic guidelines

4.3
FASD diagnosis in Australia is guided by the Australian guide to the diagnosis of FASD. It contains the Australian FASD Diagnostic Instrument,4 with diagnostic criteria intended to be used by clinicians,5 and guidelines for its use.6
4.4
The Australian guide to the diagnosis of FASD requires evidence of prenatal exposure and severe impairment in three or more neurodevelopmental domains. There are two diagnostic sub-categories:
FASD with three sentinel facial features; and
FASD with less than three sentinel facial features.7
4.5
The University of Western Australia commented that there has been ‘significant progress in Australia in regard to diagnostic rigor’ since the guide’s publication in 2016.8

What is involved in a diagnosis

4.6
Best practice in diagnosing FASD ideally requires a multidisciplinary team of clinicians to evaluate prenatal alcohol exposure, neurodevelopmental problems and facial abnormalities.9
4.7
The multidisciplinary team should include, but is not limited to:
paediatricians or physicians;
neuropsychologists;
speech pathologists; and
occupational therapists.10
4.8
According to the University of Western Australia, a FASD diagnosis typically involves multiple assessments, spread over one to two days, followed by a case conference with the multidisciplinary team.11
4.9
VicFAS told the committee that, in its clinics, each child is assessed by a multidisciplinary team using the Australian guide to the diagnosis of FASD, a process which can take between two and three days depending on the child and family needs.12
4.10
In rural and remote areas, the committee heard that the process for diagnosing FASD takes longer than two weeks and can require travel and additional support staff to facilitate appointments and contact with families.13
4.11
Data from the national FASD register indicates that in over 80 per cent of cases diagnosis is made by a paediatrician in conjunction with a multi-disciplinary team, usually in one of several specialist FASD assessment services.14

Diagnosis and early intervention

4.12
The committee heard that early diagnosis of FASD is crucial, as it is for autism and other neurodevelopmental disorders, because it allows for early intervention to address specific areas of need.15
4.13
Early intervention in a FASD context is broad-ranging. It can include therapies like speech therapy and occupation therapy, as well as more holistic supports that are focused on behaviour management and educational participation.16
4.14
Dr Alison Crichton, VicFAS Clinical Coordinator, noted the value of a diagnosis for highlighting support needs at the earliest possible stage:
A key though brief role that we play at diagnosis is communicating the FASD diagnosis and implications of this, articulating the child's support need and working with the school so the needs of the child will be met by the school or other community services.17

Barriers to diagnosis and early intervention

Difficulties diagnosing FASD

4.15
Despite the introduction of a range of initiatives to raise awareness, develop diagnostic guidelines and implement intervention programs, there are still a number of obstacles to diagnosis and early intervention.
4.16
The Australian guide to the diagnosis of FASD outlines some of the difficulties of diagnosing FASD, including that:
health professionals are often unaware of the diagnostic criteria, how to diagnose FASD, or where to refer patients for diagnosis or treatment;
many health professionals are unfamiliar with the national guidelines to reduce health risks from drinking alcohol;
few discuss alcohol use in pregnancy with their patients;
many are reluctant to raise the possibility of a FASD diagnosis because of concern about stigmatising families;
there are limited training opportunities for health professionals and no nationally adopted diagnostic instrument; and
there is confusion about diagnostic criteria and a perceived lack of evidence-based treatments.18

Lack of trained health professionals

4.17
The committee heard that one the reasons for the lack of FASD diagnostic services is a lack of appropriately trained clinicians to assess and diagnose FASD. Surveys continue to show evidence of a knowledge gap in clinicians and the general public regarding FASD.19
4.18
The Australian Medical Association told the committee that some of the key barriers to diagnosing FASD are the complex requirements of a best-practice FASD diagnosis and the lack of inclusion of FASD in mainstream training requirements for medical practice.20

Limited diagnostic services

4.19
There is a need for more multidisciplinary diagnostic centres across Australia, the committee heard.21
4.20
Although most states and territories now have diagnostic services, funding is often short-term, services are patchy in rural and remote settings, and access is limited by long waiting lists, the patient’s age and the cost involved.22
4.21
In Western Australia, for example, there is no public health service delivering holistic and multidisciplinary FASD diagnostic and management services. The Western Australian (WA) Government told the committee that hospital and community paediatricians are currently providing ‘limited and fragmented services’ without appropriate or specific funding.23
4.22
In Queensland, despite a high population of people likely affected by FASD, there are only two clinics with specialist knowledge.24

Funding issues

4.23
Professor Elizabeth Elliott, speaking for FASD Research Australia, told the committee that the state of diagnostic and treatment services in Australia is a product of a short-term and fragmented funding model:
Funding is very variable. Clinics are funded by states and territories, by the Australian government or by private enterprise, and it's often short term.25
4.24
The Royal Australasian College of Physicians submitted that current funding and availability of diagnostic and treatment services, including wraparound medical care, is unsatisfactory.26
4.25
It recommended that all children in Australia should have access to multidisciplinary child development services to diagnose FASD and other neurodevelopmental conditions.27
4.26
In September 2020, the Minister for Health announced additional funding of $24 million over four years from 2020–21 for FASD diagnostic and support services. The Department of Health told the committee:
This initiative will reduce waiting times for FASD diagnostic services and support people who have been diagnosed with FASD, their families and carers.28
4.27
The Department of Health, at a public hearing in March 2021, advised that the funding will be used to continue some existing FASD services and initiatives, and a portion of the budget ($9.8 million) will be used to expand diagnostic services across Australia through a competitive open-market process.29
4.28
Professor Elizabeth Elliott noted that the funding should be used to bolster public health services, including child development services, community and general paediatric services, and multidisciplinary FASD assessment services.30
4.29
She noted that, whilst the funding is welcome, consideration must be given to its equitable distribution and to ensure that remote and rural communities are being appropriately serviced. In addition, she suggested that Telecare can be better utilised to increase accessibility.31
4.30
The committee heard that an audit of diagnostic services and funding sources is needed. This should include consideration of new diagnostic models and trials in order to evaluate their efficacy and cost-effectiveness if they were to be implemented more broadly in Australia.32

Cost and accessibility

4.31
According to FASD Research Australia, access to diagnostic services is ‘problematic and inequitable’, as some clinics provide a free service open to any child and others charge a significant fee, restricting access for some families.33
4.32
For families in rural, regional and remote areas, on low incomes or with language or literacy challenges, access to screening or diagnostic services can be especially difficult and costly.34

Access to services in rural and remote areas

4.33
Inquiry participants noted that most diagnostic and treatment services are located in metropolitan areas and that, although telehealth is sometimes provided, rural and remote areas are insufficiently supported.35
4.34
The Gold Coast Hospital and Health Service, Child Development Service, argued that the best-practice model for diagnosis, which involves a full multidisciplinary team, is only accessible to a small percentage of the population, is time-consuming and is not scalable.36
4.35
It was further noted that access to allied health clinicians to complete the recommended assessment poses a real challenge in many regions, creating a ‘diagnostic burden’ unlikely to be overcome in rural and remote areas:
Establishing more diagnostic capable services throughout Australia will contribute to improved community awareness, understanding and access to diagnostic assessments. However, such services will likely only develop in major regional areas, leaving rural and remote areas unsupported.37
4.36
The committee heard that, while telehealth has been helpful in bridging certain gaps in regional and remote areas, such as progressing parts of the diagnostic assessment process, inquiry participants felt it was not a substitute for face-to-face service delivery and support.38
4.37
It was suggested that outreach services such as fly-in fly-out clinicians were also useful as a temporary solution, but ultimately an unsustainable model.39

Medicare rebates

4.38
Several inquiry participants suggested the need to reform Medicare rebates to support increased diagnostic and treatment activity.40
4.39
Mrs Katherine Burchfield, Health Director at the Royal Far West, told the committee that current Medicare rebates are too low to support services and cover the cost of assessment and therapeutic responses:
I appreciate that Medicare is not the only funding mechanism through which that could be done, but it would be, in our view, the most effective way of providing appropriate resources into the system to allow this better response around FASD from our clinical staff.41
4.40
It was also suggested the list of items on the Medicare Benefits Scheme (MBS) be reviewed to enable better access to telehealth. Royal Far West noted that telehealth can be used to increase access to therapeutic support in rural and remote regions, by using case conferences between urban specialist units and rural care teams to support best practice wraparound support.42
4.41
Professor Doug Shelton of the Gold Coast Hospital and Health Service, Child Development Service, noted that there are currently no Medicare item codes specific to FASD, although there are some for other neurodevelopmental conditions, such as autism spectrum disorder:
We would suggest that perhaps these particular item numbers should be more broadly applicable to neurodevelopmental presentations rather than linked to particular diagnoses, which would allow primary care and private paediatricians to become involved in the diagnosis and assessment of children potentially with FASD or indeed any complex neurodevelopmental presentation.43
4.42
The Department of Health told the committee that the MBS Review Taskforce is considering recommendations that FASD be included on the list of neurodevelopmental disorders under Medicare Item 135.44
4.43
The department noted that the MBS Review Taskforce is also considering ways to improve access to paediatric allied health assessments, including by amending the list of eligible disabilities by M10 items to include FASD:
These recommendations would support an increase in screening and diagnosis for FASD … the MBS task force is considering stakeholder feedback. … It’s then up to government to carefully consider the taskforce’s recommendations before making a response.45

Long wait times

4.44
Inquiry participants told the committee that many clinics have limited resources to cope with demand, creating long wait times.46 For example, the current waiting period for diagnosis in NSW is in excess of eight months.47
4.45
According to FASD Research Australia, researchers have found that in a study of 42 families of children with FASD, the average wait time between symptoms and diagnosis was four years, and 75 per cent of families had seen at least three doctors during that time.48
4.46
The Child and Youth Assessment and Treatment Service in Central Australia faces considerable wait times. According to Dr John Boffa, Chief Medical Officer,Public Health at the Central Australian Aboriginal Congress:
… we can complete the assessment on about two children a week. But that still leaves a waiting list of more than 100 children, mostly from town—we're not even going out bush.49
4.47
The committee heard that these barriers demonstrate the need for a sustainable national funding strategy for FASD diagnostic services to ensure equitable access and timely and comprehensive assessments for all young people at risk of FASD.50

Culturally safe and language-appropriate diagnostic services

4.48
Culturally appropriate, practical and psychological supports are needed for the individual, their caregiver and family, during what may be a confronting process.51 For example, VicFAS uses First Nations health workers as support for families during the diagnostic process.52
4.49
Inquiry participants also suggested that the FASD diagnostic guidelines should be revised to include specific cultural competencies for ensuring culturally safe therapeutic responses. In addition, it was suggested that the guidelines should specifically reference the effects of intergenerational trauma on neurocognitive development.53

Screening and diagnosis in a youth justice/child protection setting

4.50
Getting a diagnosis is particularly difficult for children or young adults in the justice system, with lengthy delays in accessing diagnostic assessments even where there is clear evidence of a disability or impairment.54
4.51
In addition, in the child protection setting, the committee heard that there is less likely to be information available about the mother's alcohol consumption, creating a further barrier to FASD diagnosis.55
4.52
The Gold Coast Hospital and Health Service noted that it has seen increasing referrals to its Child Development Service as a result of greater awareness of FASD in the Department of Child Safety. It noted that half of the children seen by the service are listed as being in child protection.56
4.53
The committee heard that there must be mandatory training for all Department of Child Safety networks in Australia and a close relationship with local child health services that assess for FASD.57
4.54
Inquiry participants were also supportive of routine screening for FASD in the child protection system, including adolescents in out-of-home care.58

Misdiagnosis and delayed diagnosis

Misdiagnosis

4.55
The committee heard that as many as 80 per cent of people diagnosed with FASD were previously misdiagnosed with another disability or disorder.59
4.56
Misdiagnosis occurs for a range of reasons, including the prevalence of co-occurring conditions such as Attention-Deficit/Hyperactivity Disorder (ADHD), Autism Spectrum Disorder, or other behavioural learning problems.60
4.57
Additionally, as facial anomalies become less distinctive with puberty and behavioural and cognitive impairments become more pronounced, there is a greater risk of misdiagnosis because the underlying neurological abnormalities are not understood.61
4.58
One carer explained the consequence of misdiagnosis of autism spectrum disorder for her son with FASD:
As our state offered no assistance related to FASD for our son or our family, we just continued using strategies for autism, just as we had been advised to do. We didn't know what else to do. Our son's behavioural problems intensified.62

Delayed diagnosis

4.59
In many cases, a FASD diagnosis is often not made until children start school, when their functional impairments are more evident.63 Since not all neurodevelopmental domains can be assessed in early childhood, assessment can require a longitudinal approach.64
4.60
Inquiry participants told the committee that delayed diagnosis is stressful for families, and that their child's behaviour and health may deteriorate as a result.65
4.61
VicFAS told the committee that the delays in diagnosing FASD can also have serious impacts on the stability of placements of children in care and can lead to placement breakdown.66
4.62
Due to the difficulty in getting a FASD diagnosis, some inquiry participants raised concerns that a FASD diagnosis may not occur until an individual reaches adolescence or adulthood, by which time they may already be in the justice system.67

Concerns about over-diagnosis

4.63
The WA Government raised concerns about possible over-diagnosis of FASD because, under the current guidelines, any reported in-utero exposure to alcohol can be enough to warrant exploration of FASD:
In addition, there is no clear neurocognitive phenotype of FASD, which can lead to over and mis-diagnosis. Observed cognitive impairment may be due to other factors that are labelled as FASD because there is not a specific pattern of deficits.68
4.64
The WA Government submitted that further research is needed to support the reliable identification of impairments directly attributable to prenatal alcohol exposure.69
4.65
The Catholic Women’s League Australia (CWLA) told the committee that in the absence of a ‘universally agreed diagnostic criteria for FASD’, there is the capacity for over-diagnosis. However, the CWLA noted that the current evidence suggests under-diagnosis is the ‘more common problem’.70

Secondary disabilities and co-occurring conditions

Co-occurring conditions

4.66
Individuals with FASD experience a high prevalence of co-occurring conditions, the committee heard.71
4.67
At least 428 comorbid conditions have been identified to date, although further research is needed to fully understand the range and impact of co-occurring conditions.72
4.68
FASD Research Australia noted that some of the most common co-occurring conditions are hearing and vision impairment, conduct and language disorders and chronic serious otitis media (ear infections).73
4.69
The University of Queensland suggested that routine screening for comorbid conditions, as well as a more holistic and integrated approach to clinical care, is needed for individuals with FASD.74

Diagnosing secondary disabilities

4.70
The committee heard that secondary disabilities are common with FASD—that is, consequential conditions arising from the FASD but not directly linked to the organic basis of the disorder.75
4.71
Secondary disabilities can include, for example, mood disorders such as anxiety and depression, and behavioural issues, like aggression, which can arise in FASD-affected individuals because of an awareness of their cognitive inadequacies compared to their peers.76
4.72
According to the Gold Coast Hospital and Health Service, Child Development Service, the secondary disabilities associated with FASD have a heavy treatment burden:
Secondary disabilities potentially afflict every aspect of the individual typically are well established by the time the individual reaches a tertiary service for assessment and diagnosis. As such, the treatment burden (both financially and effort based) is high, which results in many treatment services being either incapable of or unwilling to engage with the client.77

Limitations of current diagnostic guidelines

Issues with the current diagnostic guidelines

4.73
The committee heard that the current Australian diagnostic guidelines are too rigid and ‘at odds with other diagnostic classifications’.78
4.74
Associate Professor Doug Shelton of the Gold Coast Hospital and Health Service gave evidence that the current guidelines set the bar too high:
At the moment the guidelines hinge upon having a severe neurodevelopmental impairment in at least three brain domains. The definition of 'severe' is that you have to be functioning at less than the second percentile or two standard deviations below the mean. That's a very strict criteria …79
4.75
The complex nature of FASD diagnosis as provided in the current diagnostic guidelines also means that children and families need more time than current funding provisions allow, and that the demand for diagnosis is likely to increase over time.80
4.76
The WA Government also raised concerns that the current diagnostic guidelines ‘lack specificity and clear guidelines for differential diagnosis’.81

Updates to the current guidance and diagnostic instrument

4.77
The Australian guide to the diagnosis of FASD was published in 2016 and has not been updated since 2016.82
4.78
FASD Research Australia told the committee that, to ‘remain current and evidence-based’, there must be a review and revision of the Australian guide to the diagnosis of FASD.83
4.79
The Department of Health (the department) advised the committee that the University of Queensland has been funded to undertake a comprehensive review and update of the Australian FASD guidelines between 2019–20 and 2022–23.84 The committee heard that, once completed, the revised diagnostic tool will be considered by the National Health and Medical Research Council for approval as a national Clinical Practice Guideline.85
4.80
According to the department, the funding will enable the review and update of the Australian guide to the diagnosis of FASD to ensure that it aligns with international and clinical best practice for the diagnosis of FASD, as well as facilitating dissemination activities amongst clinicians.86
4.81
The committee heard that the review should consider expanding the criteria for a FASD diagnosis to include children with moderate to severe functional impairment who currently do not meet the diagnostic guidelines.87

Initiatives aimed at improving access to diagnostic services

Tiered models using primary health care providers

4.82
The committee heard that, in addition to strengthening the specialised end of diagnostic service provision, there needs to be a greater focus on the role of primary health care providers.88
4.83
The National Fetal Alcohol Spectrum Disorder (FASD) strategic action plan 2018–2028 already recognises that ‘primary health care providers in remote locations can play a key role in the coordination of screening services’.89

Reserving specialist FASD clinics for complex cases

4.84
It was suggested to the committee that assessment and diagnostic services need to extend beyond specialist clinics and become ‘part of routine practice’ across a range of primary health care settings, reserving specialist services for the most complex cases.90
4.85
VicFAS told the committee that it was supportive of a multi-tier model of FASD diagnosis. It suggested that there could be a network of practitioners equipped to provide individual diagnosis and referral pathways, so that the most complex cases are done by diagnostic clinics, and more straightforward assessments can be conducted in the community.91
4.86
VicFAS also suggested that a paediatric FASD consultation service could be established to facilitate local diagnosis which could utilise technologies such as telehealth:
This may include reviewing clinical photos for FASD phenotype, discussing clinical cases by telehealth/ phone/ and email, reviewing and interpreting assessments, using the Australian FASD Diagnostic Guidelines. In the short term this aims to increase the capacity for FASD diagnosis in Victoria with little increased resourcing. In the longer term the consultation service will empower community paediatricians to assess and mange children with FASD locally and independently.92
4.87
roundsquared told the committee that it supported the development and trial of a FASD pre-screening tool that could be used by a wider range of health services, including general practitioners (GPs), child and maternal welfare services and adolescent health services.93

Queensland tiered assessment model

4.88
The Gold Coast Hospital and Health Service, Child Development Service, has developed a primary care model that uses a tiered assessment approach to diagnose FASD.94
4.89
The model was developed in response to the waitlist burden for diagnostic services, and the large number of ‘at risk’ individuals not seeking or unable to access diagnostic services.95
4.90
The committee heard that the tiered assessment model is equivalent to a full comprehensive assessment under the Australian guide to the diagnosis of FASD. The assessment process is broken into six ‘manageable’ tiers, through which a child progresses, and the information collected from each stage forms the basis of a diagnostic decision.96
4.91
Through the model, primary care and specialist services collaborate to ensure that practitioners and GPs in rural and remote areas receive support from specialists.97
4.92
According to Professor Doug Shelton of the Gold Coast Hospital and Health Service, Child Development Service:
We strongly believe that to democratise the diagnostic process it needs to be widely available, particularly in rural and regional areas. The only way to do that logically and cost-effectively is to provide it through primary care. This tiered assessment model is evidence based and proven to be effective.98

Use of technology and telehealth

Telehealth

4.93
The University of Queensland suggested there need to be more innovative and creative ways to assess and diagnosis FASD in a range of settings, including by telehealth. It noted the use of telehealth to undertake assessments in Canada for approximately 10 years, facilitating increased access to services in rural and remote areas.99
4.94
The committee heard from several health services using telehealth as a part of its FASD diagnosis and treatment service.100 For example, VicFAS advised that it uses a model of face-to-face and telehealth services, with feedback on appointments provided through telehealth, and family and carer feedback occurring face-to-face with clinicians.101
4.95
The Gold Coast Hospital and Health Service said that its Child Development Service is increasingly using telehealth for its FASD diagnostic assessment and follow-up supports:
Our experience to date suggests that the early stages of the diagnostic process, along with some basic response to early intervention- support the family whilst they are progressing through the diagnostic process, and addressing immediate ‘quick win’ clinical issues, is both effective and successful through a telehealth model of care.102
4.96
Royal Far West said telehealth has become a central tool for FASD diagnosis and treatment during the COVID-19 pandemic, although it noted that it still has limitations:
Prior to COVID-19, Royal Far West completed almost all assessments face to face. Since COVID-19, Royal Far West has relied solely on telehealth for assessments, reviews and therapy. Where possible, we have completed assessments and diagnoses, but in many cases children are still waiting for completion of assessments face to face.103
4.97
The Gold Coast Hospital and Health Service, Child Development Service, explained that complex cognitive functions still require specialised equipment or face-to-face assessment. Although there are solutions being explored by clinics: ‘these have start-up costs that in the current financial environment become inhibitive’.104

Northern Territory virtual diagnostic model

4.98
NT Health has developed a model of case management with Aboriginal Community Controlled Health Services (ACCHSs) in Darwin and Alice Springs to assess children for neurodevelopmental disorders, including FASD, through a single virtual setting, and connect them with appropriate services.105
4.99
Through this model, the ACCHS is able to maintain contact with the child and their family ‘regardless of the diagnosis, to ensure that effective care coordination occurs’.106
4.100
Dr Andrew Webster, Head of Clinical Governance, Danila Dilba Health Service told the committee that ACCHSs can provide a ‘one-stop shop’ within a trusted service rather than families having to go through the process of diagnosis with multiple providers.107

3D facial imaging and epigenetic studies

4.101
Researchers are currently contributing to the development of 3D facial imaging as a potential diagnostic tool and to genetic research in children with prenatal alcohol exposure and/or FASD to enable earlier and more accurate diagnosis of FASD.108
4.102
Royal Far West suggested that further research is needed to investigate the use of other technologies such as 2D/3D facial photography, to facilitate best practice FASD assessment and care at a distance.109

Addressing workforce capacity

4.103
The committee heard that FASD diagnostic training needs to be embedded in training for a range of health professionals including medical practitioners, paediatricians, and allied health and social work professions.110
4.104
According to VicFAS, medical and allied health professionals also require more information about diagnostic pathways, for example, whether a child can be assessed and diagnosed appropriately within the community or if referral to a multidisciplinary team is required.111

Targeted training for health professionals

4.105
A range of training packages have been developed for clinicians to support diagnostic activity.112 This includes an e-learning package to complement the Australian guide to the diagnosis of FASD.113
4.106
The committee heard, however, that interested practitioners may need to travel interstate to undertake more extensive training in diagnosis using the Australian guide to the diagnosis of FASD.114
4.107
The Gold Coast Hospital and Health Service has trained over 270 health professionals through a three-day practical training course. Those who complete the course are encouraged to promote themselves as ‘FASD skilled’ and register their service on FASD Hub:
… we try to make it as practicable as possible, because, when they walk out the door, we want them to have the confidence to be able to go and diagnose children in their own patch immediately.115

FASD Models of Care project

4.108
The Fetal Alcohol Spectrum Disorder Models of Care project aims to develop and implement local models of care and expand sustainably funded FASD diagnosis and therapy service models across the country.116
4.109
The project includes an online Graduate Certificate in the Diagnosis and Assessment of Fetal Alcohol Spectrum Disorders (FASD) to provide multidisciplinary clinicians with the specialist knowledge and clinical skills required to participate in team-based diagnosis and assessment of FASD.117
4.110
The course is delivered to a range of disciplines including nursing, occupational therapy, paediatrics, psychology, speech pathology and social work.118
4.111
The University of WA reported significant interest in the course, although it suggested that a key barrier for clinicians engaging in further training and education is accessibility and cost. The course has not been HECS/HELP supported and limited scholarships have been available; however, some Commonwealth Supported Places have recently become available.119

Committee view

Availability of diagnostic services

4.112
Despite a growth in diagnostic and early intervention activity in recent years, access to FASD diagnostic services remains fragmented, poorly funded and lacking in a whole-of-government approach. The committee is of the view that this is an unacceptable situation, particularly noting the significant consequences of a delayed diagnosis or misdiagnosis, and the risk of secondary disabilities.
4.113
The committee welcomes the additional funding for diagnostic services, announced by the federal government during the inquiry. It is paramount that the funding address inequalities in access to diagnostic services, particularly in rural and remote areas.

Recommendation 13

4.114
The committee recommends that the Australian Government undertake a national audit of current FASD diagnostic services and funding to identify priority areas and inform a longer-term and sustainable funding model.
4.115
The committee is also supportive of measures to review Medicare rebates to better cover the costs of the range of assessment practices and therapeutic responses to FASD, including the increased use of telehealth.

Recommendation 14

4.116
The committee recommends that the Medicare Benefits Schedule (MBS) Review Taskforce recommends including MBS Items that cover the range of clinical practices involved in FASD assessments, diagnoses and treatments.

Exploring alternative models of assessment

4.117
The committee is of the view that FASD diagnosis must be made more widely available within the community, particularly in rural and remote areas. Therefore, alternative models of assessment must be pursued, and primary health care better utilised, in the assessment and diagnosis of FASD.
4.118
Evidence of tiered assessment models, such as that trialled in Queensland, were of particular interest to the committee and may have broader application. The committee also notes that there is scope for further innovation to support the increased role of primary health care in FASD assessment and diagnosis, including through telehealth.

Recommendation 15

4.119
The committee recommends that the Australian Government fund:
an evaluation of tiered models of assessment and use of technology to improve accessibility to diagnostic services, including in rural and remote communities; and
the implementation of a trial for a model of tiered FASD assessment utilising primary health care services.

Building workforce capacity

4.120
To meet future workforce needs, the committee considers that there must be increased diagnostic training across disciplines. The committee notes that there are well regarded existing programs that warrant further investment, including practical training courses offered by clinical services, as well as tertiary courses.

Recommendation 16

4.121
The committee recommends that the Australian Government allocate funding for FASD diagnostic training, including:
for the expansion of the delivery of practical training courses provided by clinical services; and
for scholarships and/or subsidies to increase the number of practitioners with a Graduate Certificate in the Diagnosis and Assessment of Fetal Alcohol Spectrum Disorders (FASD).

Recommendation 17

4.122
The committee recommends that Australian universities ensure that FASD modules are included in university curriculums for relevant occupations, including those for education and teaching, medicine, midwifery, psychology, social work, occupational therapy, speech and language pathology.
4.123
The review of the Australian guide to the diagnosis of FASD also presents an opportunity to strengthen diagnostic workforce capacity and primary health care involvement in assessments and referrals. The committee is of the view that the revised guide and diagnostic tool, once finalised, must be broadly disseminated and training provided to specialists and primary health care workers.

Recommendation 18

4.124
The committee recommends that the Australian Government allocate funding for a project to disseminate the Australian guide to the diagnosis of FASD immediately following its revision and to train health professionals in its use.

  • 1
    Foundation for Alcohol Research and Education (FARE), Submission 50, Attachment 1, p. 28.
  • 2
    National Organisation for Fetal Alcohol Spectrum Disorder (NOFASD), Submission 40, pp. 7 and 11−15; Legal Aid Western Australia, Submission 41, p. 3; National Aboriginal Community Controlled Health Organisation (NACCHO), Submission 56, p. 5. The Australian guide to the diagnosis of FASD has been developed to assist clinicians in the diagnosis, referral and management of FASD.
  • 3
    NOFASD Australia, Submission 40, pp. 7 and 11−15; Legal Aid Western Australia, Submission 41, p. 3; National Aboriginal Community Controlled Health Organisation (NACCHO), Submission 56, p. 5.
  • 4
    Professor Carol Bower and Professor Elizabeth J Elliott AM, Australian guide to the diagnosis of FASD, 2016, Appendix A (Australian Fetal Alcohol Spectrum Disorder (FASD) Diagnostic Instrument), pp. 45–71.
  • 5
    Professor Carol Bower and Professor Elizabeth J Elliott AM, Australian guide to the diagnosis of FASD, 2016, p. 4. The Australian diagnostic criteria are similar to the Canadian guidelines, and the guide uses clinical aids developed in the United States.
  • 6
    Professor Carol Bower and Professor Elizabeth J Elliott AM, Australian guide to the diagnosis of FASD, 2016, pp. 4–39.
  • 7
    Professor Carol Bower and Professor Elizabeth J Elliott AM, Australian guide to the diagnosis of FASD, 2016, p. 4; FASD Research Australia, Submission 42, p. 8.
  • 8
    University of Western Australia, Submission 23, p. 2.
  • 9
    Professor Carol Bower and Professor Elizabeth J Elliott AM, Australian guide to the diagnosis of FASD, 2016, p. 4.
  • 10
    University of Western Australia, Submission 23, p. 2.
  • 11
    University of Western Australia, Submission 23, p. 2.
  • 12
    VicFAS, Submission 34, p. 2.
  • 13
    Dr John Boffa, Chief Medical Officer Public Health, Central Australian Aboriginal Congress, Committee Hansard, 14 October 2020, p. 12.
  • 14
    FASD Research Australia, answers to questions on notice 19 May 2020 (received 5 June 2020), [p. 3].
  • 15
    See, for example, FASD Research Australia, Submission 42, p. 11; roundsquared, Submission 11, p. 4.
  • 16
    Dr Alison Crichton, VicFAS Clinical Coordinator, Monash Health, Committee Hansard, 24 June 2020, pp. 23–24. Early intervention is discussed in further detail in Chapter 5.
  • 17
    Dr Alison Crichton, VicFAS Clinical Coordinator, Monash Health, Committee Hansard, 24 June 2020, p. 19. Support and management for FASD is discussed further in the next chapter.
  • 18
    Professor Carol Bower and Professor Elizabeth J Elliott AM, Australian guide to the diagnosis of FASD, 2016, p. 2.
  • 19
    University of Western Australia, Submission 23, p. 2.
  • 20
    Australian Medical Association (AMA), answer to question on notice (received 21 October 2020), p. 2.
  • 21
    Dr Sharman Stone, Submission 8, p. 4.
  • 22
    FASD Research Australia, Submission 42, p. 10; Gold Coast Hospital and Health Service, Child Development Service, Submission 35, p. 5.
  • 23
    Western Australian Government, Submission 65, Attachment 1, p. 25.
  • 24
    Queensland Advocacy Incorporated, Submission 21, [p. 4].
  • 25
    Professor Elizabeth Elliott, Co-Director, FASD Research Australia Centre of Research Excellence, Telethon Kids Institute, Committee Hansard, 19 May 2020, p. 27.
  • 26
    Royal Australian College of College of Physicians, Submission 64, p. 5.
  • 27
    Royal Australian College of College of Physicians, Submission 64, p. 5.
  • 28
    Department of Health, answer to question on notice IQ20-000672 19 May 2020 (received 16 October 2020), [p. 2].
  • 29
    Mr David Laffan, Acting First Assistant Secretary, Population Health Division, Department of Health, Committee Hansard, 10 March 2021, pp. 18–19.
  • 30
    Professor Elizabeth Elliott, Fellow, Royal Australasian College of Physicians, Committee Hansard, 16 September 2020, p. 9.
  • 31
    Professor Elizabeth Elliott, Fellow, Royal Australasian College of Physicians, Committee Hansard, 16 September 2020, p. 9.
  • 32
    Professor Elizabeth Elliott, Co-Director, FASD Research Australia Centre of Research Excellence, Telethon Kids Institute, Committee Hansard, 19 May 2020, pp. 27−28.
  • 33
    FASD Research Australia, Submission 42, p. 10.
  • 34
    roundsquared, Submission 11, pp. 3−4.
  • 35
    See, for example, roundsquared, Submission 11, p. 4; Royal Australian College of General Practitioners, Submission 53, p. 1; Gold Coast Hospital and Health Service, answer to written question on notice 29 September 2020 (received 13 October 2020) pp. 2–3; NOFASD Australia, Submission 40.2, [p. 3]; FASD Research Australia, Submission 42, pp. 10–11.
  • 36
    Gold Coast Hospital and Health Service, Child Development Service, Submission 35, p. 5.
  • 37
    Gold Coast Hospital and Health Service, Child Development Service, Submission 35, p. 5.
  • 38
    Danila Dilba Health Services, answer to written questions on notice 20 October 2020 (received 3 November 2020), p. 3. For example, PATCHES relied on telehealth from March to June 2020 and was able to offer standardised assessments to clients in the NT, but practitioners found difficulty in assessing functional communication within the child's natural setting and picking up on subtle non-verbal information that comes with face-to-face contact.
  • 39
    Gold Coast Hospital and Health Service, Child Development Service, Submission 35, p. 5.
  • 40
    See, for example, FASD Research Australia Submission 42, p. 23; Gold Coast Hospital and Health Service, Child Development Service, Submission 35, p. 12; Professor Harry Blagg, Mrs Suzie May, Clinical Associate Professor Raewyn Mutch, Dr Tamara Tulich and Dr Robyn Williams, Submission 22, p. 2. See also, Parliament of Australia, FASD: The hidden harm: Inquiry into the prevention, diagnosis and management of Fetal Alcohol Spectrum Disorders, House of Representatives Standing Committee on Social Policy and Legal Affairs, November 2012. The Hidden Harm report recommended that the Commonwealth Government include FASD in the List of Recognised Disabilities and the Better Start for Children with a Disability Initiative (Recommendation 1).
  • 41
    Mrs Katherine Burchfield, Health Director, Royal Far West, Committee Hansard, 14 October 2020, p. 37.
  • 42
    Royal Far West, Submission 68, p. 3.
  • 43
    Associate Professor Doug Shelton, Clinical Director, Women's, Newborn and Children's Services, Gold Coast Hospital and Health Service, Committee Hansard, 16 September 2020, p. 28.
  • 44
    Ms Sharon Appleyard, First Assistant Secretary, Population Health and Sport Division, Department of Health, Committee Hansard, 19 May 2020, p. 6. See also AMA, answer to written questions on notice 29 September 2020 (received 21 October 2020), p. 1.
  • 45
    Ms Sharon Appleyard, First Assistant Secretary, Population Health and Sport Division, Department of Health, Committee Hansard, 19 May 2020, p. 6. See also AMA, answers to written questions on notice 29 September 2020 (received 21 October 2020), p. 1.
  • 46
    FASD Research Australia, Submission 42, pp. 10–11.
  • 47
    roundsquared, Submission 11, p. 4. See also FARE, Submission 50, Attachment 1, p. 25; Gold Coast Hospital and Health Service, answers to written questions on notice 29 September 2020 (received 13 October 2020), pp. 1–2; NOFASD Australia, Submission 40.2, [pp. 3–4].
  • 48
    FASD Research Australia, Submission 42, pp. 10–11.
  • 49
    Dr John Boffa, Chief Medical Officer Public Health, Central Australian Aboriginal Congress, Committee Hansard, 14 October 2020, p. 13.
  • 50
    FASD Research Australia, Submission 42, p. 11.
  • 51
    AMA, Submission 5, Position statement, p. 1; Australian Human Rights Commission, Submission 17, pp. 16 and 18.
  • 52
    Ms Prue Walker, Private capacity, Committee Hansard, 24 June 2020, p. 23.
  • 53
    Professor Harry Blagg, Mrs Suzie May, Clinical Associate Professor Raewyn Mutch, Dr Tamara Tulich and Dr Robyn Williams, Submission 22, p. 13.
  • 54
    See, for example, Dr Andrew Webster, Head of Clinical Governance, Danila Dilba Health Service, Committee Hansard, 14 October 2020, p. 2; NOFASD, Submission 40, p. 10; Legal Aid WA, Submission 41, p. 4.
  • 55
    Ms Sarah Ward, Acting Head, Health Promotion, FARE, Committee Hansard, 24 June 2020, p. 7.
  • 56
    Gold Coast Hospital and Health Service, Child Development Service, Submission 35, p. 13.
  • 57
    Gold Coast Hospital and Health Service, Child Development Service, Submission 35, p. 13.
  • 58
    See, for example, Victorian FASD Special Interest Group, Submission 29, p. 3; NOFASD, answers to questions on notice 24 June 2020 (received 21 July 2020), pp. 5–6.
  • 59
    NOFASD Australia, Submission 40, p. 7.
  • 60
    See, for example, AMA, Submission 5, Position statement, p. 3; AMA, answers to written questions on notice 29 September 2020 (received 21 October 2020), p. 2; Australian College of Midwives, Submission 31, [p. 4]; Joint submission Drug ARM and Queensland Coalition for Action on Alcohol, Submission 45, p. 4; Catholic Women’s League Australia, Submission 26, p. 6.
  • 61
    roundquared, Submission 11, p. 6. People affected by FASD may not display the characteristic physical features associated with the condition and may go undiagnosed or misdiagnosed as a result.
  • 62
    Cheryl, Private capacity, Committee Hansard, 24 June 2020, p. 12.
  • 63
    Professor Carol Bower, Co-Director, FASD Research Australia Centre of Research Excellence, Telethon Kids Institute, Committee Hansard, 19 May 2020, p. 28.
  • 64
    NT Government, Submission 2, p. 19; Professor Carol Bower, Co-Director, FASD Research Australia Centre of Research Excellence, Telethon Kids Institute, Committee Hansard, 19 May 2020, p. 28.
  • 65
    FASD Research Australia, Submission 42, p. 11. Researchers found that, of 42 families studied, the average wait time between symptoms and diagnosis was four years, and three quarters had seen at least three doctors during that time.
  • 66
    VicFAS, Submission 34, p. 7.
  • 67
    Professor Harry Blagg, Mrs Suzie May, Clinical Associate Professor Raewyn Mutch, Dr Tamara Tulich and Dr Robyn Williams, Submission 22, p. 3.
  • 68
    Western Australian (WA) Government, Submission 65, p. 26.
  • 69
    WA Government, Submission 65, p. 15.
  • 70
    Catholic Women’s League Australia, Submission 26, pp. 5–6.
  • 71
    University of Queensland, Submission 36, p. 9.
  • 72
    University of Queensland, Submission 36, p. 9; FASD Research Australia, Submission 42, p. 12; NOFASD, Submission 40, p. 7.
  • 73
    FASD Research Australia, Submission 42, p. 12, citing Svetlana Popova et. al., ‘Comorbidity of fetal alcohol spectrum disorder: A systematic review and meta-analysis’, Lancet, 387(10022): 978-987, 2016, doi.org/10.1016/s0140-6736(15)01345-8.
  • 74
    University of Queensland, Submission 36, p. 9; Gold Coast Hospital and Health Service, Child Development Service, answers to written questions on notice 29 September 2020 (received 13 October 2020), p. 6.
  • 75
    Gold Coast Hospital and Health Service, Child Development Service, Submission 35, p. 17.
  • 76
    Gold Coast Hospital and Health Service, Child Development Service, Submission 35, p. 17.
  • 77
    Gold Coast Hospital and Health Service, Child Development Service, Submission 35, p. 17.
  • 78
    Gold Coast Hospital and Health Service, Child Development Service, Submission 35, p. 6.
  • 79
    Associate Professor Doug Shelton, Clinical Director, Women's, Newborn and Children's Services, Gold Coast Hospital and Health Service, Committee Hansard, 16 September 2020, p. 30.
  • 80
    Gold Coast Hospital and Health Service, answers to written questions on notice 29 September 2020 (received 13 October 2020), p. 2.
  • 81
    WA Government, Submission 65, [p. 7].
  • 82
    FASD Research Australia, Submission 42, p. 8. See also FASD Hub, FASD diagnosis: Australian guide to the diagnosis of FASD (accessed 13 February 2021). The Australian guide to the diagnosis of FASD was released on 5 May 2016 and updated on 13 May 2016. Updates were made in February 2020 to some links, and pages were reformatted; however, there have been no amendments to the diagnostic instrument and how to use it.
  • 83
    FASD Research Australia, Submission 42, p. 11.
  • 84
    Mr David Laffan, Acting First Assistant Secretary, Population Health Division, Department of Health, Committee Hansard, 10 March 2021, pp. 15 and 19; Department of Health, Submission 25, p. 6; Department of Health, answer to question on notice IQ20-000262 (received 12 June 2020).
  • 85
    Mr David Laffan, Acting First Assistant Secretary, Population Health Division, Department of Health, Committee Hansard, 10 March 2021, p. 19; Dr Natasha Reid, Private capacity, Committee Hansard, 16 September 2020, p. 39.
  • 86
    Department of Health, Submission 25, p. 6.
  • 87
    Gold Coast Hospital and Health Service, answers to written questions on notice 29 September 2020 (received 13 October 2020), p. 3.
  • 88
    Associate Professor Doug Shelton, Clinical Director, Women's, Newborn and Children's Services, Gold Coast Hospital and Health Service, Committee Hansard, 16 September 2020, p, 28.
  • 89
    National Fetal Alcohol Spectrum Disorder (FASD) strategic action plan 2018–2028 (National FASD strategic action plan), p. 22, www.health.gov.au/sites/default/files/national-fasd-strategic-action-plan-2018-2028.pdf (accessed 15 March 2021).
  • 90
    University of Queensland, Submission 36, p. 8.
  • 91
    VicFAS, Submission 34, p. 9.
  • 92
    VicFAS, Submission 34, p. 14.
  • 93
    roundsquared, Submission 11, pp. 8 and 11; National FASD strategic action plan, p. 22. The development and trial of a possible FASD pre-screening tool that could be used by a wider range of health services was also flagged in the National FASD strategic action plan.
  • 94
    Gold Coast Hospital and Health Service, Child Development Service, Submission 35, p. 5.
  • 95
    Gold Coast Hospital and Health Service, Child Development Service, Submission 35, p. 5.
  • 96
    Gold Coast Hospital and Health Service, Child Development Service, Submission 35, p. 5.
  • 97
    Gold Coast Hospital and Health Service, Child Development Service, Submission 35, p. 5.
  • 98
    Associate Professor Doug Shelton, Clinical Director, Women's, Newborn and Children's Services, Gold Coast Hospital and Health Service, Committee Hansard, 16 September 2020, p. 28.
  • 99
    University of Queensland, Submission 36, p. 10.
  • 100
    VicFAS, Submission 34, p. 3.
  • 101
    VicFAS, Submission 34, pp. 3–4.
  • 102
    Gold Coast Hospital and Health Service, Child Development Service, answer to questions on notice 29 September 2020 (received 13 October 2020), p. 3.
  • 103
    Royal Far West, answers to written questions on notice 20 October 2020 (received 6 November 2020), p. 2.
  • 104
    Gold Coast Hospital and Health Service, Child Development Service, answer to questions on notice 29 September 2020 (received 13 October 2020), p. 3.
  • 105
    NT Government, Submission 2, p. 19. Consumption of alcohol during pregnancy is routinely recorded on maternal records during antenatal visits in the Northern Territory.
  • 106
    NT Government, Submission 2, p. 19.
  • 107
    Dr Andrew Webster, Head of Clinical Governance, Danila Dilba Health Service, Committee Hansard, 14 October 2020, p. 4.
  • 108
    FASD Research Australia, Submission 42, p. 10.
  • 109
    Royal Far West, Submission 68, [p.] 4.
  • 110
    VicFAS, Submission 34, p. 8.
  • 111
    VicFAS, Submission 34, p. 8.
  • 112
    See, for example, FASD Research Australia, Submission 42, p. 9.
  • 113
    FASD Research Australia, Submission 42, p. 5. AMA, Submission 5, Position statement, p. 3.
  • 114
    Office of the Children's Guardian (NT), Submission 4, [p. 3].
  • 115
    Associate Professor Doug Shelton, Clinical Director, Women's, Newborn and Children's Services, Gold Coast Hospital and Health Service, Committee Hansard, 16 September 2020, p. 32.
  • 116
    The University of WA, Submission 23, p. 1. The project includes parties from across Australia, with eight services and organisations in WA, NT, Victoria, Tasmania and South Australia participating.
  • 117
    The University of WA, Submission 23, p. 1.
  • 118
    The University of WA, Submission 23, p. 4.
  • 119
    The University of WA, Submission 23, p. 4; The University of Western Australia, Postgraduate Graduate Certificate in the Diagnosis and Assessment of Fetal Alcohol Spectrum Disorders (FASD) (accessed 15 March 2021).

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