The Australian Medical Association (AMA) has publicly announced their support for Fetal Alcohol Syndrome Disorder (FASD) to be recognised by the government as one of their officially listed disabilities.
If recognised, those dealing with FASD (also known as Fetal Alcohol Spectrum Disorder) will be more readily eligible for services and benefits under NDIS. For families affected by FASD, many of whom come from low socio-economic backgrounds, these services can make a world of difference.
“The AMA urges the government to continue to provide support for the important preventive and aftercare work being undertaken, and to include FASD on the list of recognised disabilities,” Dr Michael Gannon, President of AMA, said in a press release.
“FASD is associated with a range of birth defects including hyperactivity, lack of focus and poor concentration, delayed development, heart and kidney problems, and below average height and weight development."
A more harrowing statistic from the AMA is that the average life expectancy of a patient with FASD is just 34 years.
FASD is a preventable condition caused by consuming alcohol while pregnant.
But advocacy group No FASD ‘s Executive Officer, Louise Gray, says people should avoid "mother-blaming". They need to understand the circumstances for these mothers can be more complicated than many realise.
“It’s not so black and white. While it might seem obvious for a well-educated, stable-incomed individual that women should not drink while they’re pregnant, it’s not as obvious for some people. And mother-blaming is definitely not the answer here,” she says.
"Mother-blaming is definitely not the answer here."
Another barrier against FASD's claim for recognition is some doctors are reticent to diagnose patients with the disorder, says Gray. This is due to the taboo associated with the condition, as well as the discrepancies surrounding what exactly certain symptoms are caused by.
“There are only three official diagnostic clinics in Australia. And because there are only three places that people can go to across the whole nation, that limits the number of people who can officially receive a diagnosis seen to be legitimate with the NDIS,” Gray says.
As it stands, families and carers of individuals with FASD are eligible for some benefits under the Commonwealth Action Plan, but to be eligible for NDIS requires having a “strong advocate” for a FASD patient’s case.
“If they're advised to take the right tests - like an occupational therapy test or brain function test - there’s a lot of tests around that can assess ability, they can then get the funding. Because then they’ve got a problem that can be diagnosed, regardless of the cause of their problem and without the NDIS recognising FASD,” Gray says.
“[Individuals with FASD] often have a gift-of-the-gab, the vocabulary, and they can communicate. Whether they can translate that communication into an action and real understand is often where they fall down.”
Consuming alcohol at different stages of gestation can have different consequences for people with FASD. Not all sufferers of the disease have “wide eyes and thin upper lips” as is typically thought.
“They’ll often have a gift-of-the-gab, the vocabulary, and they can communicate. Whether they can translate that communication into an action and real understand is often where they fall down,” says Gray.
“Just recently I’ve had a couple of mothers contact me and one used the expression it was ‘living in GroundHog Day with the child’. Every day you had to go over the same thing because the child had very limited retention," she says.
No FASD welcomes the support of AMA, and hopes the government listens to include the disorder in their officially recognised list of disabilities.