THE SENATE MATTERS OF PUBLIC IMPORTANCE Fetal Alcohol Spectrum Disorder SPEECH Monday, 29 July 2019

I rise to speak on this matter of public importance, and the issue of fetal alcohol spectrum disorder, or FASD, is very important. It is often referred to as the invisible disability. But I share with the Senate that, as far as my families and clan groups are concerned, it's not so invisible. Unfortunately, it's a very visible part of our daily life, a very visible part of the community life and a very visible part of the educational system in trying to deal with students across the Northern Territory, but in particular in our remote communities, who are suffering from FASD.

FASD refers to the spectrum of fetal outcomes linked to alcohol use during pregnancy, and they may include physical, cognitive and/or developmental symptoms. It's often not noticed until the child reaches school age. From their learning and how they relate to their peers, it becomes apparent. The majority of children and adults who have FASD live with significant cognitive, behavioural, health and learning difficulties which are lifelong. And, unfortunately, a lack of research and data means we do not have a really clear picture of FASD prevalence in Australiathat is, from an academic research perspective. But I can certainly tell the Senate that there are many personal stories and information about FASD just in the Northern Territory, and concerns about FASD, I'm very aware, across WA and Queensland.

It is believed up to half a million Australians could be on this spectrum. We know from the AMA that FASD is not confined to a particular community or demographic; it is a disorder that crosses socioeconomic, racial and educational boundaries. We also know that alcohol consumption statistics and epidemiological data on FASD prevalence from comparable countries suggest that FASD prevalence in Australia is higher than previously thought. In the US, for example, it's estimated that FASD affects, roughly, between two and five per cent of the population. The AMA also tells us that in some high-risk Indigenous communities the prevalence may be as high as 12 per cent.

This disability is entirely preventable, and this is where our main efforts need to be focused. Again, in my home of the Northern Territory, the lack of reliable data means we don't know much about how many children and families are affected. But we do know from the 2015 Australian Early Development Census that some 37 per cent of children in the Northern Territory were considered 'developmentally vulnerable' across one or more domains.

In some communities, it was as high as 50 per cent. Experts also estimate that in Central Australia one in five children could suffer from FASDone in five. Again, all of these cases are entirely preventable. I'm pleased to say that in April last year the Northern Territory's first diagnostic centre for FASD opened in Central Australia.

The centre, opened by the Central Australian Aboriginal Congress, helps ensure early diagnosis and immediate access to services. Early intervention and support improves psychosocial and behavioural outcomes for those affected by FASD. Wraparound services such as this provide important support for children and families.

In Darwin in May last year, Aboriginal Peak Organisations Northern Territory, APO NT, hosted a landmark Top End forum on FASD. That forum brought together 180 delegates from 37 organisations across the Northern Territory including Aboriginal leaders, FASD experts, Aboriginal Community Controlled Organisations, government representatives, medical professionals, and non-government organisations. That forum heard from specialist neonatal and general paediatrician, Dr Mantho Kgosiemang. She spoke of her experience as a paediatrician in the Northern Territory and said the common effect that she sees with children affected by FASD is that they are born smaller than they should be. These children end up staying for a prolonged period of time in hospitalwhether it's in Royal Darwin Hospital, Katherine Hospital or Tennant Creek Hospital, or in Alice Springs or Nhulunbuy, our children are spending way too much time in these hospitals. These prolonged hospital stays also affect family members, who may then be separated for longer from kin, culture and community. For remote communities, access to a paediatrician might be at most once a month, for example, in larger communities like Maningrida. But what about the smaller communities, like Yarralin? They may only get a paediatrician once every three to four months. In between, they are seen by GPs who, again, may just be visiting for a number of weeks. Aboriginal medical services and Aboriginal Controlled Community Health Services have a key role in working for change and driving change in our communities.

FASD also increases the likelihood of a person coming into contact with the criminal justice system, and we've been hearing that from other senators here speaking to this MPI. Canadian research has found that people with FASD are approximately 19 times more likely to be arrested than their peers. Here in Australia, Dr James Fitzpatrick, a paediatrician and researcher working with children who have FASD, says 36 per cent of people in juvenile detention in WA have the disorder. That's just in WA. Not only would early diagnosis help get children listed on the National Disability Insurance Scheme and able to access support, but he believes it could help lower prison rates. Early intervention can provide the skills that reduce the likelihood that an individual with FASD will come into contact with the criminal justice system. Furthermore, it is vital that these interventions are culturally and linguistically appropriate. Let's remember: in the Northern Territory alone we have over 100 Aboriginal languages.

Dealing with issues such as FASD also relies on a willingness to take strong action overall on alcohol-related harm. The extreme levels of alcohol-related harm in the Northern Territory are well documented. Updated research from the Menzies School of Health Research indicates alcohol-related harm costs the Territory upward of $1.38 billion per year. We know alcohol-related harm is hurting the Territory, both socially and economically.

For this reason, the Northern Territory Labor government introduced the most wide-ranging alcohol reform agenda in the country. The NT Alcohol Harm Minimisation Action Plan 2018-2019 was introduced nearly 18 months ago as an evidence based approach to tackling alcohol-related harm. The plan is focused on delivering generational change through alcohol reforms. The implementation of 75 of the 219 recommendations is complete, and significant progress is being made against the remaining recommendations. There are some early positive results from the reforms, with reductions in alcohol-fuelled assaults, domestic violence, antisocial behaviour and emergency department presentations a really, really critical aspect of monitoring the steps in this action plan. NT-wide, emergency department presentations had reduced by 24 per cent at December 2018, compared to 2017. Non-government organisations, community groups and industry are closely involved in the successful implementation of the recommendations.

A major problem in many NT towns and communities is the secondary supply of alcohol. Coordinated measures such as the Banned Drinker Register are stopping problem drinkers from accessing takeaway alcohol.

It is critical that the parliament of Australia be acutely aware of FASD and of the need for thorough research to take place in our country to protect families and their children from this disease, which is incurable.

Download Hansard transcript here.