We must act. We must make FASD history

The following is an abridged extract of a presentation given by June Oscar AO at the Alcohol Tobacco and other Drugs Council of Tasmania 2016 Conference held in Hobart 12-13 May, and has been republished here with permission.

Today I would like to talk about initiatives that my organisation, the Marninwarntikura Fitzroy Women’s Resource Centre, is investing around alcohol in the Kimberley region of Western Australia.

Marninwarntikura is implementing a suite of innovative recovery programs for generational transmitted trauma. This is a whole-of-life, whole-of-family approach, not just an isolated initiative.

However, approaches like this need substantial investment. Unfortunately, under current arrangements, organisations like ours are not funded to the level required to really do what is needed and what we know is right.

To better understand my community and experience, I’ll give you some social and historical context.

The Fitzroy Valley where I live in the Kimberley is essentially an Aboriginal domain, where 3,000 people from five language groups live in today’s 30-odd communities. Fitzroy Crossing is the only town and is the service hub for these communities.

Like Indigenous people throughout Australia, we live with the inherited trauma from invasion and prolonged frontier conflict. In our case not that long ago – in my grandparent’s lifetime. Although we have achieved great success and remained resilient, building from the strengths of our remarkable heritage, we still live within the context of that trauma today.

Fitzroy Crossing’s population grew from approximately 100 people to more than 2,000 in a few short years. Living conditions were deplorable.

And in the peak of the population displacement turmoil, the State Government amended the Liquor Act to remove all restrictions on Kimberley Aboriginal people’s access to alcohol. This change was made in the name of reforming discrimination laws, but it happened without any engagement or planning with the people who would be affected most.

Since the 1970s the horrific consequences of alcohol on our community has worsened. Over the years, grog tore at our community’s social fabric.

Between 2005-2006 the Fitzroy Valley community attended 50 funerals. This included 13 suicides. Many deaths were of young people and most were alcohol-related.

The State Coroner Alistair Hope concluded that: “Alcohol abuse is both a cause and a result of many problems for Aboriginal people in the Kimberley. The problems associated with alcohol abuse are the most obvious and the most pervasive.”

By 2007, the grog crisis could no longer be ignored.

Women in the community rallied to action. With the support of the Police Commissioner, we imposed statutory restrictions on the sale of full-strength alcohol.

The restrictions have now been in place for nine years. It has made the Fitzroy Valley a calmer, more peaceful place in which to plan for a sustainable societal reconstruction.

Within this period, we have been able to act and collect evidence. We can see the symptoms of alcohol and trauma-related harm, and there is no excuse but to invest in ameliorating this harm and focus our attention on the causes.

After these restrictions were in place, we were able to examine the impact of alcohol on our children. In 2009, after a long period of community consultation, we embarked on Australia’s first prevalence study of Fetal Alcohol Spectrum Disorders.

Fetal Alcohol Spectrum Disorders (or FASD) are a group of conditions which are caused by prenatal exposure to alcohol. Some of these kids with brain injuries look quite normal, but struggle in their development. FASD is lifelong. FASD is 100 per cent preventable.

We discussed the potential benefits and risks of this work with the community, but decided that unless we named the problem and provided evidence that it existed we would not achieve traction in our efforts to improve FASD diagnosis and management, to support parents and caregivers, and most importantly to prevent this tragedy. All the work reinforced that this was not about blame or shame. This project was the beginning of really understanding the evidenced effects of transmitted trauma.

We assessed children in the community with a multi-disciplinary team of doctors, psychologists and allied health professionals.

We found that one in five children (19 per cent) had a Fetal Alcohol Spectrum Disorders, one of the highest prevalence rates in the world.

What this study showed is that many children in Fitzroy have problems with memory, with learning and academic achievement. Some have problems with writing and fine motor tasks. Some had a low IQ, problems with concentration and overactivity.

Children as young as seven had mental health issues, including self-harm, talk of suicide and use of drugs and alcohol.

These children are vulnerable to sexual abuse and family and domestic violence, and many have already had contact with child protection services.

But the key problem for teachers and parents is the difficult behaviours that will predispose these children to academic failure, contact with juvenile justice, and risk of incarceration. Five years on, we are seeing children from our project’s cohort involved in petty crime, drug use and inappropriate sexual behaviour.

Trauma is clearly leaving its imprint. Not just in our emotional responses and reactions to life when we are in pain and grief, but in our very neurological and physiological makeup. Trauma is transmitted and transforms societies from one generation to the next.

We are now developing long-term approaches to deal with this inter-generational cycle of trauma.

There is no single solution. The current alcohol restrictions were never intended as a panacea, but rather as a foundation for the Fitzroy Valley community to work together, in relative calm, to understand that when we take the courageous action to intervene we open the door on possibilities and real change.

Our story is one of a community taking control of a crisis and looking forward to intergenerational health and wellbeing.

We have used the evidence of FASD as a strong foundation to provide immediate support to individual children, including in the classroom, and to raise awareness of the harms associated with drinking alcohol during pregnancy.

Midwives are reporting increased abstinence from alcohol during pregnancy among young women. Recent research surveying over 400 people in the Fitzroy Valley found that all participants were aware of FASD and its cause.

We have developed the ‘Marulu Strategy’, a multidisciplinary service provision strategy, to provide innovative, ongoing responses to the reality of FASD.

The Fitzroy Valley District High School has a Marulu room to enable time out to settle kids with FASD in a safe place. We have initiated a school-based intervention to help children with impulse control. We have developed a resource for teachers and will be adapting this for the police and other professional support groups.

We are also commencing a positive parenting program to increase understanding and management of difficult behaviours. We are developing new therapeutic educational pathways and new models of healthcare.

And, through the media, we are encouraging the conversation about alcohol use in pregnancy in the non-Indigenous community. We have contributed data to national and state inquiries, and are engaging with politicians on this issue.

Still, in ours and many remote communities in Western Australia and beyond, we see the consequence of FASD. Populations of children with chronic complex needs and severe impairments that will limit their potential through the lifespan.

This cannot continue with this as our reality.

We must act. We must prevent FASD. We must make FASD history.