"We used the law, to stem the flow of alcohol, to help us breathe on the ground so we could better realise our rights to a full and healthy life," Ms Oscar said a speech this month. The community – particularly the grandmothers – then became concerned that children were behaving differently to past generations and had a hunch alcohol may be to blame. They initiated Australia's first-ever study of the prevalence of Fetal Alcohol Spectrum Disorders (FASD), which can affect babies born to women who drink alcohol while pregnant. The Lililwan project (meaning "all the little ones") was a partnership between Nindilingarri Cultural Health Services, Marninwarntikura Women's Resource Centre, George Institute and the University of Sydney. The study was sensitive. It involved interviewing mothers about drinking while pregnant and then assessing almost every seven to eight-year-old in the Fitzroy Valley for FASD.

Ms Oscar said pro bono lawyer Anne Cregan and others helped the Aboriginal women's leadership in Fitzroy Crossing "do something quite remarkable". The lawyers were asked to draw up intellectual property agreements to ensure the community maintained control over the findings of the study. They were also involved in ensuring study participants gave informed consent and later in defending the liquor licensing restrictions. "Something that is of great concern to people in the Fitzroy Valley is that if you have an oral culture, if you have all that knowledge passed down, memory is critical and one of the impacts of FASD is on a person's memory and it really impacts on their ability to pass down a culture," Ms Cregan said.

The study found the prevalence of FASD – one in five children – was amongst the highest in the world. Gilbert and Tobin pro bono partner Anne Cregan and Aboriginal and Torres Strait Islander Social Justice Commissioner June Oscar. Credit:Janie Barrett Ms Cregan said FASD was a condition she was largely unaware of until she started working with Marninwarntikura Women's Resource Centre. "While we were there they started telling us about FASD," she said. "We learned about poor impulse control, about difficulty maintaining attention, about dysmaturity [developmental immaturity], about poor short-term memory, the sorts of things that bring a young person into contact with the criminal justice system."

The Marninwarntikura Women's Centre and other groups told the lawyers the condition was not taken into account when people with FASD appeared before courts. They also spoke of the difficulty people with FASD and their carers faced in accessing support and services because the condition was not recognised as a disability in law and policy. (Recent evidence suggests people with FASD are overrepresented in detention. A study this year found 36 percent of prisoners aged between 13 and 17 in Banksia Hill Detention Centre in Western Australia had FASD.) "We were hearing from people in Fitzroy Crossing: 'You are a lawyer. You need to do something about this,'" Ms Cregan said, And so this month Gilbert and Tobin, where Ms Cregan is now a pro bono partner, launched policy papers in Sydney, Perth and Melbourne calling on the federal and state governments to end discrimination against people with FASD.

Many areas of law and policy require someone to have a particular type of disability – such as Autism Spectrum Disorders or an intellectual disability – to access government support or be recognised by the criminal justice system. Many people with FASD do not meet the criteria for an intellectual disability because they have an IQ above 70, despite having symptoms such as poor memory, impaired language and delayed development. This means their carers may not be eligible for the Carer Allowance and in some jurisdictions they are not eligible for education funding or to be diverted from the criminal justice system. "We are asking two things of governments," Ms Cregan said. "One is to work with experts to determine a model definition of cognitive disability which includes people with FASD and other conditions such as acquired brain injury and dementia, who also miss out very often in these type of criteria.

"The second thing is to review law and policy, particularly in areas of welfare support, education and the criminal justice system, to make sure people with FASD are not missing out on the support they need." A spokesperson for the Commonwealth Department of Social Services said FASD was not included on the list of recognised disabilities because it varied in severity and therefore the amount of additional care required. However she said their carers could still qualify for the Carer Allowance in some instances after an assessment of the functional ability of the child. Ms Oscar said the policy papers were another vital step in advocating for the end of discrimination against people with FASD. "Alcohol has taken a huge toll on our children," she said.

"We cannot underestimate the many knock-on effects recognising FASD as a disability will have in transforming our systems of support."