Fetal Alcohol Spectrum Disorder (FASD) is an entirely preventable permanent disability. FASD includes a range of physical and neurological impairments, occurring due to brain damage caused by exposing a fetus to alcohol during pregnancy. As a spectrum disorder, FASD manifests in a range of ways, and conditions can range from very mild to severe.
An invisible epidemic
The committee found that FASD is still not well understood or recognised in Australia and has been called an ‘invisible epidemic’. Although there is an absence of reliable prevalence figures and the social and economic costs remain unknown, the evidence indicates that the human, social and economic costs are immense. The committee considers there is a critical need for prevalence data and a robust study of the economic and social impact of FASD to ensure budgetary measures and policy efforts are appropriate and effective.
Alcohol and pregnancy
There is no safe level of alcohol that can be consumed during pregnancy. Unfortunately, Australia has one of the highest rates of maternal alcohol consumption in the world. Myths regarding the ‘safe’ use of alcohol during pregnancy have been perpetuated in the community, including by health professionals, and the alcohol industry.
Prevention
Prevention efforts must fundamentally aim to shift societal attitudes and behaviour around alcohol consumption in the broader Australian community. The Australian Government’s announcement during this inquiry of funding for three years for a national education campaign is welcome. Given the scale of the task, the committee recommends a longer-term strategy and funding for FASD awareness and education, including in secondary school curriculums. The announcement of mandatory pregnancy warning labels on all alcohol products and packaging during this inquiry was a long time coming. The committee urges alcohol companies to promptly implement the mandatory labels before the deadline in July 2023.
Health professionals
Health professionals play a key role in prevention, diagnosis and support for people with FASD and their families. Interactions with pregnant women and women of child-bearing age provide opportunities to educate women and their partners of the risks of maternal alcohol consumption and influence behaviour change. However, for a range of reasons including stigma and a lack of understanding, health professionals do not always discuss alcohol with women or provide accurate advice or referrals. The committee is of the view that building the capacity of health professionals to identify and prevent harmful alcohol consumption during pregnancy should be prioritised.
Diagnosis
FASD is often not identified early in life, if at all, and as a result many people do not receive recognition of their disability or access to support. Diagnosing FASD is complex and involves a multi-disciplinary team. The committee heard that there are limited multi-disciplinary FASD diagnostic services in Australia and wait lists are long. There is a clear need to ensure FASD diagnosis is more widely available across Australia. This includes building and training the health workforce involved in FASD diagnosis and exploring alternative models of assessment and the use of technology.
Support and assistance
Supports for a person with FASD will be necessary over the entire course of their life. Unfortunately, support services in Australia are limited and can be cost prohibitive. Throughout the inquiry, the committee was made aware of the difficulties accessing support through the education system, National Disability Insurance Scheme (NDIS) and social security system. The committee agrees with submitters that FASD must be specifically recognised as a disability by the Australian Government and the social security system. Access to assistance must be urgently improved to help people with FASD and their families to meet the extensive costs of FASD supports. The committee was moved by the challenges faced by parents and carers of children with FASD, pointing to the need for improved access to practical parenting programs, and for carers, more assistance from State and Territory child protection authorities.
Child Protection and justice systems
The committee heard that there is a high prevalence of FASD amongst children in contact with the child protection and justice systems, and that these children face further barriers to diagnosis and support. The committee considers that there should be routine screening for FASD within the youth justice and child protection systems. It is apparent that traditional approaches to justice are not adequate for people with FASD, and those working in the justice system need further training in FASD, and diversion programs and therapeutic models of detention must be further explored and expanded.
First Nations communities
Alcohol-related harm in First Nations communities is strongly linked to the impacts of colonisation, entrenched poverty and inter-generational trauma. The committee recognises the importance of a community-led approaches and was impressed by the initiatives of First Nations communities to prevent and manage FASD. The committee considers that the Australian Government must provide adequate and longer-term investment for these projects and future proposals for holistic and community-led approaches
Conclusion
The committee received a wealth of information and evidence throughout the inquiry and thanks all those who participated, especially those with lived experience who had the courage to share their experiences and knowledge with the committee. As a result, the committee has made 32 recommendations, which aim at significantly improving the prevention, diagnosis, and management of FASD. We must continue to expose the devastating harms caused by prenatal alcohol exposure.