The Foundation is working to raise awareness of Fetal Alcohol Spectrum Disorders (FASD), to develop and advocate for policies that prevent FASD and to ensure people with FASD are well supported.
On 29 November 2012 the report; FASD: The hidden harm, Inquiry into the prevention, diagnosis and management of Fetal Alcohol Spectrum Disorders was tabled in Parliament.
Endorsing the House of Representatives Social Policy and Legal Affairs Committee report, FARE says that in recommending strict timeframes for the introduction of mandatory alcohol warning labels and efforts to increase Australia’s diagnostic capacity, the Committee has recognised the urgent need to address this devastating disability now.
Mr Thorn said the Commonwealth Government needs a comprehensive plan going forward but can act on some of the recommendations now.
“The Legislative and Governance forum on Food Regulation (FoFR) will meet in Brisbane on 7 December. As recommended in the Report, FoFR must task Food Standards Australia New Zealand to start the process for the introduction of government-mandated alcohol pregnancy warning labels at
that meeting if the deadline is to be met,” Mr Thorn said.
FARE has also called on the Government to fund and commence trialing an $852,000 FASD diagnostic tool which has been awaiting government approval for over a year, and to commit funding for a comprehensive national plan in the 2013-14 Budget.
On 12 September 2012 FARE launched a fully costed $37 million solution to address the gaps in the prevention and management of FASD, the Australian Fetal Alcohol Spectrum Disorder Action Plan 2013-16.
FARE’s plan addresses five priority areas:
The Plan was developed in consultation with 33 leading FASD experts, and has been endorsed by the Australian FASD Collaboration and peak FASD consumer and carer organisation, National Organisation for Fetal Alcohol Spectrum Disorders (NOFASARD).
FASD is an umbrella term for a range of disabilities resulting from prenatal alcohol exposure. Children with FASD are born with abnormalities including behavioural problems, birth defects, impaired growth, and learning difficulties. The spectrum includes:
FASD is preventable, but incurable, and requires lifetime care and support. These disorders are a leading cause of preventable, non-genetic, birth defects, and intellectual disability in Australia.
An added problem is that whilst FASD is the leading cause of non-genetic intellectual disability, another major issue of concern is that the majority (75%-80%) of people living with a FASD actually have a normal IQ but struggle with everyday living skills; this makes accessing developmental disability services very difficult.
The difficulties experienced by people with a FASD can include difficulty with mathematical concepts, such as time and handling money; thinking things through and learning from experience; understanding consequences of their actions or “cause and effect”; difficulty with social skills; difficulty storing and retrieving information, including following instructions; and impulsivity and distractibility.
Without diagnosis and appropriate intervention, people affected by a FASD may develop secondary disabilities which can manifest over time, these include mental health problems; contact with the criminal justice system; incomplete education (suspension, expulsion or truancy); inappropriate sexual behaviour; problems with parenting; unemployment and homelessness; and alcohol and other drug misuse.
There is a need to increase awareness of the National Health and Medical Research Council Australian Guidelines to Reduce Health Risks from Drinking Alcohol (the NHMRC Guidelines). The NHMRC guidelines recommend that for women who are pregnant or planning a pregnancy, not drinking is the safest option.
To do this, we support the implementation of public education campaigns and mandatory alcohol product labelling, including health warning labels and consumer information.
We acknowledge the need to improve the level of knowledge among medical practitioners in identifying FASD and providing appropriate referral pathways for people with a FASD and women deemed to be at high risk of giving birth to a child with a FASD. Work currently underway to develop nationally recognised clinical guidelines will mean that more medical practitioners can receive appropriate training in the diagnosis and treatment of FASD.
We are supporting this process through the provision of funds to set up the first Australian diagnostic clinic at the Children’s Hospital Westmead. The clinic will trial the new clinical guidelines and train medical practitioners in the provision of diagnostic services.
We also support the formal recognition of FASD as a disability and believe that FASD should be identified as an issue that affects the whole community. We are working with the newly formed bipartisan parliamentary group on FASD to determine ways to raise awareness of FASD and improve access to appropriate services for people with FASD, and their parents and carers.