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#JustJustice: new approaches urgently needed for people living with fetal alcohol spectrum disorders (FASD)

When Croakey’s #JustJustice campaign was launched last month by Aboriginal and Torres Strait Islander Social Justice Commissioner Mick Gooda, it prompted this heartfelt tweet from Sue Miers, the Chairperson of the National Organisation for Fetal Alcohol Spectrum Disorders (FASD) Australia:

In the post below, Anne Messenger, Editor of Public Health Research & Practice at the Sax Institute, outlines what needs to be done and how we are seeing a “good start” to a different approach in New South Wales.

***

Anne Messenger writes:

As Sue Miers made clear in her tweet (above), government, policy makers and the community cannot continue to ignore FASD, this ‘root cause’ of over-incarceration. People living with fetal alcohol spectrum disorders (FASD) are born with a brain injury and experience great difficulties with learning, memory and cognition. That means that in some parts of Australia they disproportionately come into contact with the juvenile justice and corrective services systems.

Much more needs to be done, but there has been some recent movement from the New South Wales Government, which before last month’s state election pledged $2.3 million to what will be Australia’s first dedicated centre for diagnosis and treatment of fetal alcohol spectrum disorders.

The Children’s Hospital Centre for the Prevention of Harm to Children and Adolescents is an expansion of a successful pilot program run out of the hospital at Westmead, Sydney. It will provide a multidisciplinary team for those affected by FASD, including a paediatrician, a psychologist, a speech therapist, occupational therapist and physiotherapist, as well as counselling for teenage mothers through a ‘Teenlink’ service at the hospital.

Although $2.3 million is not enough to meet the needs of all people living with FASD in New South Wales, the centre will also provide training to rural and remote community health workers; and it is hoped that other states and territories will follow the New South Wales lead. A research arm will investigate the best treatment, diagnostics and counselling for the disorders.

Like the #JustJustice campaign, the centre is looking for collaborative and realistic solutions to a problem that (by extrapolation of United States prevalence data) may affect more than 100,000 Australians, a large proportion of whom are likely to be Aboriginal or Torres Strait Islander people.

Paediatrician Professor Elizabeth Elliott, from the Children’s Hospital, believes there is a vital need for a focused, national prevention plan. In a Perspective article for Public Health Research & Practice (PHRP), published last month, she said the best way to address FASD and its accompanying health effects and social distress – for both those with the disorders and their families − is prevention.

FASD has “lifelong implications and may lead to significant secondary impairments, including academic failure, substance abuse, mental ill-health, contact with the justice system, and difficulties living independently and obtaining and maintaining employment,” she wrote.

“Prevention requires education, adequate drug and alcohol services, support of initiatives such as community-led alcohol restrictions, and enforcement of existing legislation, as well as measures to decrease access to alcohol including pricing, and restrictions on promotion and advertising of alcohol.

“Although the young brain is adaptable, prenatal brain injury cannot be reversed so, for FASD, the future must be prevention.”

Professor Elliott, who has spent seven years working in remote Aboriginal communities, said all staff working at the centre would receive cultural awareness training.

She is co-author of a working party report to the National Drug Strategy (2009), which reported on a US study of 415 adults with FASD or fetal alcohol effects (FAE), which found that 60 per cent had been in trouble with the law, half had been “confined” and 35 per cent imprisoned. Drug and alcohol problems were present in 29 per cent of adolescents and 45 per cent of adults.

In June 2014, funding of $9.3 million was announced for FASD programs, including a National FASD Technical Network, chaired by Professor Elliott, to help implement the plan.

In her PHRP article, Professor Elliott said the action plan focused attention on the need to prevent FASD, but Australia lacked FASD surveillance and a national register to measure the success of any prevention programs. In the meantime, she says, the $2.3 million from New South Wales “is a good start”.

“It will allow us to fund a clinic one day per week, and we’ll be able to audit our services to get an estimate of the need for services. We already get referrals from around the state and one of our remits will be training health professionals from throughout New South Wales.

“We hope there will be capacity for such a service in other states, if not a dedicated clinic then embedded in their existing services, and we hope our service will provide a model. We believe our clinic is unique nationally and we see it as a great opportunity to put some focus on this area.”

***

The #JustJustice campaign has just over two weeks to go to raise its target. For more information, see Croakey’s earlier stories or please share this crowd-sourcing link with your networks. See also our outcomes to date.

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