I couldn’t think of a more worthy piece to pass on, from Australia’s FASD advocacy body:
Today 9/9/09 is the 10th Anniversary of International FASD Awareness Day – The 9/9 was first choosen because 9 is the number of months of pregnancy when alcohol consumption can cause permanent brian damage. .
Fetal Alcohol Spectrum Disorders is an umbrella term used to describe a range of adverse effects caused by prenatal exposure to alcohol, including Fetal Alcohol Syndrome (FAS), Partial FAS (PFAS), Alcohol-Related Neurodevelopmental Disorders (ARND) or Alcohol Related Birth Defects (ARBD)
FASD is not a label – it is a medical condition and a serious lifelong disability. Prevention, diagnosis and intervention are critical public health issues that require a high degree of planned action at a policy and service delivery level in order to reduce harm.
While International Fetal Alcohol Spectrum Disorders Awareness Day is recognised throughout the world NOFASARD would like to reflect on the current situation in Australia:
– Children, adolescents and adults with FASD have multiple and complex needs that are currently not being met and this is resulting in poor life outcomes including social exclusion
– FASD rarely appears in Australian research or policy documents where it should be receiving attention.
– FASD does not appear on the government list of registered disabilities?
– There are no Australian Clinical Guidelines for diagnosing FASD and there are no Government funded specially trained interdisciplinary diagnostic teams.
– There is no Medicare number for rebate for the diagnosis of FASD
– Despite having very similar needs, individuals with FASD do not receive the same level of care and funding as those with Autism Spectrum Disorders.
– Individuals with FASD will be over-represented amongst those with drug and alcohol dependency issues yet most treatment programmes offered by service providers are not appropriate for this population.
– There is no national standard of care for individuals of any age with FASD – they are seldom treated effectively or fairly and they are seldom connected to service dollars.
– FASD is NOT just an Indigenous issue – FASD will be find wherever alcohol is part of the culture and exists across all social groups – the majority of individuals with FASD who are on NOFASARD’S data base are non-Indigenous.
Families with affected children have waited long enough – they are desperate and their children are suffering. Families are tired of their pleas falling on deaf ears and they are tired – they need action and they need it now.
– At a minimum there needs to be at least one specially trained interdisciplinary diagnostic team in each state of Australia
– Families want to see collaboration and a greater understanding of FASD in the education, disability, drug and alcohol, health, mental health and justice systems and they want these systems to work with them, instead of against them or separate from them.
– Families who have FASD want to be consulted – they have the benefit of the wisdom that comes from practice and they are the experts when it comes to knowing what are the current gaps and inadequacies in the systems and so if we are to have any chance of addressing the best interests of those who are directly impacted, there needs to be a government sponsored forum that enables wide consultation at the grass roots level.
– Families need policy makers to understand that their children with FASD don’t grow out of their disability as they get older – they grow up to be adults with FASD who will need targeted integrated support services throughout their whole life if they are to achieve any level of sustained function.
– Families need an immediate commitment from government to provide the same level of funding as has already been provided to support children with Autism Spectrum Disorder to enable children, adolescents and adults with FASD to have access to specifically targeted service delivery.
– FASD must be included under the Commonwealth list of registered disabilities so that families don’t have to continually fight for services from the education, health, disability, social service and justice sectors.