Fetal Alcohol Spectrum Disorder (FASD) is a lifelong condition with no cure. The central nervous system damage which the child is born with is irreversible and permanent, and current treatment options are predominantly supportive.
In 2012, a House of Representatives inquiry into the prevention, diagnosis and management of FASD produced a series of landmark recommendations. Since then, there have been a number of other inquiries by the Australian, state and territory parliaments, concerned directly or substantially with FASD. There have also been multiple policy initiatives and funding commitments involving public and private organisations and individuals working together to promote better ways of preventing, diagnosing and managing FASD.
Whilst these efforts reflect a national willingness to understand FASD, broaden public understanding, and support the development of pioneering programs and models of care in local communities, FASD remains a serious yet entirely preventable disability that continues to have profound and long-lasting consequences for individuals and their families, carers and communities across Australia. Overall, FASD interventions have been ad hoc and inconsistently applied across Australia, and there is still limited awareness of FASD in the community.
The aim of this inquiry is to examine the effectiveness of programs and models for preventing, diagnosing and managing FASD, and consider ways to achieve a more coordinated and effective national response. It comes at a time of increased national attention on FASD, and alcohol-related harms more broadly. The focus of this report therefore is what we have learnt from the past decade, and how the national effort can be better targeted to address areas of need and the longer term challenge of making FASD history.
This chapter provides an overview of FASD and its effects in the community and explores the previous inquiries, policy and budget measures that have been initiated in relation to FASD.
An invisible epidemic
FASD is a diagnostic term used to describe a range of birth defects and neurodevelopmental impairments that may occur as a result of exposing the fetus to alcohol during pregnancy. The harm done by alcohol may not be evident at birth, but the central nervous system damage which the child is born with is irreversible and permanent.
FASD remains largely invisible and under-recognised in Australia. However it is one of the leading causes of preventable birth defects and intellectual disability. Whilst there are no reliable figures on the prevalence of FASD in Australia, experts estimate that it affects up to five per cent of the population, and that potentially between two and nine per cent of babies are born with FASD each year.
FASD is not confined to a particular community or demographic; it is a disorder that crosses socio-economic, cultural and education boundaries. However certain groups are more likely to be vulnerable to FASD due to patterns of alcohol consumption. Despite national guidelines recommending total abstinence of alcohol during pregnancy, the risks are still not well understood by the community, and amongst health professionals. In fact, Australia has one of the highest rates of prenatal alcohol exposure in the world.
Obtaining a FASD diagnosis is notoriously difficult, and access to diagnostic and treatment services are limited in Australia, particularly in rural and remote areas. Failure to identify children at risk and to diagnose FASD means that many individuals do not receive recognition or support for their impairments through the health, education and justice systems.
People with FASD experience lifelong challenges, including learning difficulties and disrupted education, mental illness and drug and alcohol problems. The average life expectancy for a child with FASD is 34 years. Significantly, children with FASD are over-represented in the child protection and youth justice systems.
Hidden Harm report (2012)
The House of Representatives 2012 Hidden Harm inquiry found that there was little awareness of FASD or the risks of alcohol consumption during pregnancy amongst health professionals and the wider community. It also found that Australia was lagging behind other countries in standardising FASD diagnostic criteria and prevalence data, and urged the rollout of a nationally-approved diagnostic tool to ensure early intervention and minimise the impact of FASD in later life.
The report concluded that the Australian Government needed to lead the way in recognising FASD as a legitimate and serious disability, and that a cohesive national approach was necessary. It contained 19 recommendations, with clear timeframes, focusing on national level policy and coordination efforts. It recommended that the Australian Government:
implement a National Plan of Action and a FASD Reference Group;
improve data collection on alcohol consumption by health professionals during pregnancy or at the time of birth;
develop a FASD diagnostic tool and training manual;
implement awareness campaigns for the general public and specific to youth and Indigenous communities;
implement health advisory labels on pregnancy and ovulation testing kits and on alcoholic beverages;
commission independent research into alcohol marketing, pricing and availability; and
recognise FASD on the List of Recognised Disabilities.
The inquiry was a catalyst for key national measures to address FASD and prompted greater awareness of FASD amongst health professionals and decision-makers.
The introduction of a national action plan in 2013, and a FASD Technical Network, which oversaw the implementation of the plan and provided advice on how Australia could achieve a strategic coordinated approach to FASD, was a direct result of the inquiry. The publication of the Australian FASD Diagnostic tool after the inquiry provided the necessary foundation for broad scale diagnosis and the allocation of resources for individual and population-level interventions and supports.
Although a significant step forward, these initiatives were part of a larger vision for a national and cohesive approach to FASD. Evidence before this inquiry suggests the response to some recommendations has been slow, incomplete, or non-existent. Some of the report’s key recommendations regarding data collection, public awareness campaigns and research with respect to alcohol marketing, pricing and availability, are yet to be addressed.
The Invisible Disability report (2012)
The WA Legislative Assembly examined FASD in the context of the Education and Health Standing Committee’s inquiry into Improving Educational Outcomes for Western Australians of All Ages.
The committee’s report, The invisible disability, drew attention to the broad-ranging impacts of FASD in WA, including the impact on education and justice outcomes. The committee noted a lack of public awareness, understanding and funding for FASD in Australia and examined overseas experience, and other disabilities such as autism.
At the time of the report, a national diagnostic tool was yet to be adopted in Australia, and the report noted a lack of prevalence data and research about FASD. The invisible disability report made broad-ranging recommendations covering prevention, awareness, screening, interventions and support for FASD.
The Preventable Disability report (2015)
The NT Legislative Assembly’s 2015 inquiry examined the problem of FASD within the Territory context, noting the NT has the highest rate of risky alcohol consumption in the country and a higher rate of consumption than any other country in the OECD.
The inquiry’s final report, FASD: The preventable disability, made recommendations aimed at reducing harm through alcohol management and support services, sexual health, pregnancy support, early childhood support and education services, and FASD diagnostics. Of particular significance for subsequent policy reforms, however, was the report’s focus on prevention through alcohol management and the restriction of supply.
In recognition of the problem of alcohol abuse in the NT the committee recommended a range of measures intended to restrict alcohol supply, including, for example, setting targets for reducing alcohol-related harm, amending the Liquor Act to implement a minimum floor price on standard drinks, and restricting the trading of alcohol at certain times.
Inquiries into alcohol and the criminal justice system
FASD has also been explored in inquiries into the criminal justice system and the impact of alcohol on communities more broadly.
An inquiry by the Standing Committee on Aboriginal and Torres Strait Affairs highlighted the link between FASD and the criminal justice system in its 2009 report Indigenous juveniles and young adults in the criminal justice system.
The report recommended the urgent implementation of diagnostic tools and therapies in partnership with First Nations health organisations, and that FASD be recognised as a disability and condition eligible for health and education supports.
In 2015, the Standing Committee on Indigenous Affairs reported on FASD in the context of its inquiry Alcohol, hurting people and harming communities. The report contained six FASD specific recommendations, including:
that the Australian Government increase its efforts to ensure consistent messaging about the risks of consuming alcohol during pregnancy and the importance of abstaining when planning pregnancy, when pregnant and when breastfeeding; and
the need for FASD to be included as a recognised disability to assist with access to government allowances and support under the National Disability Insurance Scheme.
Policy initiatives and funding
FASD action plan 2013–14 to 2016–17
As discussed above, the Australian Government’s FASD action plan was introduced in 2013 in response to the 2012 Hidden Harm report. Over 2013–14 to 2016–17 the FASD action plan received $9.2 million of funding.
Programs funded under the plan were aimed at improving better diagnosis and management and developing best practice interventions and services to support high-risk women. This included:
prevention and awareness campaigns (the Women Want to Know and Pregnant Pause initiatives and funding for National Organisation for FASD, or NOFASD, awareness campaigns);
health promotion resources and organisations (including the web-accessible FASD Hub); and
funding for national data collection and national FASD case register intended to monitor FASD prevalence trends over time.
Taking More Action on FASD (2016–17 to 2019–20)
The Taking More Action on FASD program ($10.5 million over 2016−17 to 2019−20) built on the achievements of the FASD action plan and provided funding for additional prevention activities and on-the-ground FASD diagnostic services in communities of high need.
Funding under the program has been directed toward:
diagnostic services and models of care projects;
a NOFASD telephone and online counselling activity; and
support for parents and caregivers through the Russell Family Fetal Alcohol Disorders Association.
National FASD strategic action plan 2018–2028
In November 2018, the National Fetal Alcohol Spectrum Disorder (FASD) Strategic action plan 2018–2028 (National FASD strategic action plan) was launched as a sub-strategy of the National alcohol strategy. The plan was initiated in response to a review of the FASD action plan 2013−14 to 2016−17 by a roundtable of key FASD stakeholders and government agencies in December 2016.
The plan has received $7.2 million in funding over four years to support prevention, diagnosis, support and management of FASD in Australia. The plan, which is not solely the responsibility of government bodies, is overseen by the Ministerial Drug and Alcohol Forum and supported by the National Drug Strategy Committee, which includes a FASD Advisory Group established to monitor implementation of the plan.
Funding under this plan is intended for several existing FASD initiatives including the national FASD case register, FASD Hub, Women Want to Know and Pregnant Pause programs. Funding will also be provided for other awareness raising and education activities and resources, including in the education and justice sectors, and will fund a review and update of the FASD diagnostic tool.
On 9 September 2020, the Minister for Health announced a further $24 million under the National FASD strategic action plan for FASD diagnostic and support services to improve wait times and support.
National alcohol strategy 2019–2028
The National alcohol strategy 2019–2028 was endorsed by all states and territories through the Ministerial Drug and Alcohol Forum in November 2019.
The National alcohol strategy provides a national framework for governments, communities, organisations and industry to reduce the harms of alcohol on the Australian community. One of its key aims is a 10 per cent reduction in harmful drinking.
The National alcohol strategy includes the following FASD-related objectives:
improve FASD prevention through community awareness, and improved FASD detection, diagnosis and access to therapy;
increase awareness of the full range of treatment options for at-risk women, including outpatient counselling and relapse prevention medicines for dependence;
educate around the harms to a developing baby as a result of maternal alcohol consumption in school and post-secondary and tertiary education;
disseminate, promote and provide training to support the use of established resources; and
improve access to support services, including through the National Disability Insurance Scheme.
The National alcohol strategy notes that responsibility for implementing policy measures, including decisions of funding, legislation and programs, is shared by the Commonwealth and States:
It is expected that in taking action to support implementation of this Strategy that jurisdictions will apply an evidence based approach to contribute to the objectives of the Strategy. The mix of actions adopted in individual jurisdictions and the details of their implementation may vary to reflect local and/or national priorities.
In December 2019, the Australian Government announced $25 million over four years for the Foundation for Alcohol Research and Education to implement a national awareness campaign for pregnancy and breastfeeding women.
State and Territory policies and funding
The committee heard that there has been a modest investment by state and territory governments in FASD specific policies.
The NT is the only jurisdiction with a dedicated FASD action plan, which it released in 2018.
In WA, the state government has launched a FASD model of care and implementation framework, and addressed FASD specifically in its Alcohol and drug interagency strategy 2018–22.
Local communities, like Fitzroy Crossing in WA, have developed their own FASD action plans and have initiated research projects and pilot programs to address the impact of FASD.
Reflecting on the past decade
Since the Hidden Harm report, the establishment of a national policy and coordinating mechanism, as well as funding for research, prevention, diagnosis and support, represents a significant step forward in the national response to FASD.
The publication of the Australian guide to the diagnosis of Fetal Alcohol Spectrum Disorders in 2016 was a key milestone. Australia has also seen an increasing number of diagnostic services and there is a growing but patchy body of data on cases of FASD nationally.
The investment in research and innovative programs in the past decade has seen Australia move to the forefront in international efforts for FASD prevention, diagnosis and support. The first prevalence study in Australia was undertaken in Fitzroy Crossing, WA, and has resulted in a world class community-led Marulu strategy and programs.
Despite this progress, there is still a limited awareness of FASD in the community and mixed messages about drinking during pregnancy in the general population and from health professionals. A lack of FASD prevalence data continues to undermine policy efforts and the limited diagnostic and support services available across the country are struggling to keep up with demand. There are also growing concerns about the prevalence of FASD in the child protection and justice systems, and the potentially immense social and economic cost of FASD for the community more broadly.
Since the committee started its inquiry in November 2019, several significant FASD policy and budget announcements have been made, relevant to the inquiry’s terms of reference. This includes the National alcohol strategy announced in November 2019, and additional Australian Government funding with a combined value of $49 million for FASD diagnostic and treatment services, and for a national education campaign.
In addition, in July 2020, the Australia and New Zealand Ministerial Forum on Food Regulation agreed on a standard mandatory pregnancy warning label for all alcohol and packaging, eight years after its recommendation in the Hidden Harm report.
On 9 September 2019, the Senate referred an inquiry into effective approaches to prevention and diagnosis of FASD, strategies for optimising life outcomes for people with FASD and supporting carers, and the prevalence and management of FASD, including in vulnerable populations, in the education system, and in the criminal justice system, for inquiry and report by 15 June 2020. The full terms of reference are available on the website.
On 23 March 2020 the Senate granted an extension of time for reporting until 9 September 2020; and on 2 April 2020 the Senate granted a further extension to 2 December 2020. On 2 September 2020, the Senate granted an extension of time for reporting until the second last sitting day in March 2021.
This report is presented in six chapters:
Chapter 1 introduces the significant impact of FASD in Australia, and what has been done to improve FASD prevention, diagnosis and support through parliamentary inquiries and national policies and funding;
Chapter 2 discusses factors influencing maternal alcohol consumption and the prevalence and social and economic impact of FASD;
Chapter 3 focuses on prevention efforts, the role of health professionals, prevention and awareness initiatives, and the issue of alcohol availability;
Chapter 4 considers obstacles to diagnosis and early intervention, the use of diagnostic tools, and case studies of successful programs;
Chapter 5 examines management and support services for FASD, including access to the National Disability Insurance Scheme; and
Chapter 6 discusses the link between FASD and inter-generational trauma amongst First Nations communities, and successful community-led initiatives.
Conduct of the inquiry
The inquiry was advertised on the committee's website and the committee wrote to relevant organisations inviting submissions by 29 November 2019.
The committee published a media release on 11 September 2019 calling for submissions to the inquiry.
The committee received a total of 69 public submissions, including one submission with the name withheld. A list of submissions received by the committee is available at Appendix 1 and copies of public submissions can be accessed on the committee's website.
The committee held seven public hearings in Canberra on 19 May 2020, 24 June 2020, 25 June 2020, 16 September 2020; 14 October 2020; 4 December 2020 and 10 March 2021.
The committee is disappointed that its planned visit to Alice Springs and Fitzroy Crossing was delayed, and subsequently cancelled, due to the COVID-19 pandemic. However, evidence provided by witnesses in these locations via submissions, answers to questions on notice, and remote participation in Canberra-based hearings, has been invaluable to the inquiry.
A list of witnesses who provided evidence at the public hearings is available at Appendix 2.
The committee thanks all of the individuals and organisations who submitted to the inquiry and appeared as witnesses.
Notes on terminology and references
References in this report to Committee Hansard are to the official transcripts. Page numbers may vary between the proof and official transcripts.