HON ALISON XAMON (North Metropolitan) [ 5.36 pm ]: I rise because I want to recognise that this Saturday, 9 September, is International FASD Awareness Day. It is held on the ninth day of the ninth month every year. The date was chosen to highlight the importance of the nine months of pregnancy. International FASD Awareness Day was first held in 1999, so awareness of the existence and cause of FASD has increased significantly since that time. For members who do not know what FASD is, it stands for foetal alcohol spectrum disorder. It is the term used for the wide range of negative effects and birth defects that can occur as a result of drinking alcohol during pregnancy. Prenatal alcohol consumption interrupts or alters the normal development of the foetus, including the development of the brain and major organs. The effects of FASD can vary enormously. It is sometimes referred to as the invisible disability because it very often goes undetected. The majority of those with FASD will not have the facial features that are commonly associated with FASD. As a result, FASD can be overlooked or ignored. It is very often attributed to another condition, such as autism or attention deficit hyperactivity disorder, and sometimes it is just blamed on poor parenting or post-birth environments. Although it may be invisible, its effects are certainly life altering. The majority of children and adults who have FASD live with significant cognitive, health and learning difficulties, including problems with memory and attention, cause and effect reasoning, impulsivity, receptive language and adaptive functioning.
There is no cure for FASD, but there are effective interventions and supports that can help lessen the impacts. Importantly, it is 100 per cent preventable. In 2016, the “Australian Guide to the Diagnosis of FASD” was published. Much has happened over the last several years. We now at least have a guide to support health practitioners to diagnose FASD, but even with this tool, the diagnosis of FASD is not easy. It is complex and, ideally, it requires a multidisciplinary team of clinicians. Other recent developments include the establishment of two specialised clinics that provide FASD diagnosis and support in metropolitan and regional areas within Western Australia. I note, of course, the fabulous work being undertaken on FASD prevention by the Telethon Kids Institute and others. Some members may have had the opportunity to see some of the research that the institute has been undertaking when we had the presentation on medical research on Tuesday night.
In the last federal budget $10.5 million was committed to reduce the occurrence of foetal alcohol spectrum disorder in high-risk remote and rural communities. We really do need to use days like FASD Awareness Day to recognise the progress that has been made, but we have to recognise the enormity of the challenge ahead of us. FASD continues to represent what I believe is one of our most significant social and public health issues. One of the issues is that FASD is still not recognised in Australia as a disability in its own right. To get disability supports people must be assessed based on their support needs. The disability sector is concerned that current assessments are overly focused on particularly intellectual impairment, and do not adequately judge the functional impairment experienced by many people with FASD. That means a lot of people who really need it are missing out on support, and we really need to look at amending our assessment criteria to take this into account. The sector is also concerned that, as a result, the ability of the National Disability Insurance Scheme to meet the needs of people with spectrum disorders like FASD is compromised. This is a national concern, not simply a concern within this state. In fact, even being referred for assessment is not easy, particularly for marginalised populations. Too often it is just not happening.
We know that many young people with FASD constantly find themselves in trouble without understanding why. Without appropriate intervention, memory impairment associated with FASD means people have difficulty in learning from their past mistakes. They often make the same mistakes over and over again, despite increasingly severe consequences. Young people with FASD might be able to repeat rules or instructions, but one of the difficulties they have is being able to put those rules and instructions into action. It is therefore not surprising that so many people with FASD end up in the justice system.
I want to make some comments about the Telethon Kids Institute Banksia Hill project, which I personally find very exciting. It was supported by the Department of Corrective Services and the Department for Child Protection and Family Support. It is the first study nationally to assess and diagnose children in an Australian youth custodial facility, and researchers are in the preliminary stages of data analysis. Early results show that 30 per cent to 40 per cent of those assessed have FASD — 30 to 40 per cent! These young people have debilitating and lifelong neural developmental impairments that affect their ability to function in society if they do not have appropriate support interventions. I remind members that this is through no fault of their own; they were born his way.
Becoming involved in the youth justice system and particularly being sentenced to a period of detention as a child in itself clearly demonstrates that something has gone terribly, terribly wrong. I don’t believe that it could get much worse than that. I think it is really tragic these young people are only now, often at ages of 13, 14 or 15, getting diagnosed with what turn out to be significant neurological impairments. I think that demonstrates how badly we are failing these children. It raises the questions: Why are these disabilities not being picked up earlier? What happens now with those young people in detention once they have received a diagnosis? We know that the specialist services and the supports they need are simply not there in the way they need to be.
Addressing FASD will require a coordinated multifaceted response, and our response to this critical issue cannot be keeping a government department siloed around its response. We need to make sure it is not quarantined in the Health space, although obviously Health needs to be engaged firmly in this work. A whole-of-government FASD plan needs to be developed that includes coordinated prevention activities. We need to remember that FASD prevention should not just be seen in terms of remote Aboriginal communities, which I think some people mistakenly think should be the entire focus. We need to look at early diagnosis and intervention. We now have a tool to diagnose, which is fantastic — it is a really important improvement — but it is still a specialist area. It is really time-consuming and expensive. More work is to be done on screening tools and diagnostic services. Importantly, early recognition and early therapy will minimise the adverse outcomes often seen and help children with FASD to live their best possible lives. It will also be better for the community if we identify these children early on and ensure they get support as soon as possible. We need to give ongoing support, including specific strategies in Child Protection, Police and the justice system. We know that foetal alcohol spectrum disorder is often not noticed until children reach school age when behavioural and learning difficulties start to become far more evident. We need to be able to equip education, health, child protection and justice workers with the tools that they need to determine whether people should potentially be assessed. They also need the tools to support young people who have been diagnosed. Families also need more knowledge, skills and support.
Young people at Banksia Hill Detention Centre are a really compelling example of what happens when we do not have an effective, overarching strategy to address FASD. As babies with FASD continue to be born, grow up and grow old, our community will continue to bear the extraordinary costs of FASD. We are bearing those costs across our health, education, disability and justice systems and with the enormous, often tragic, personal costs to families who are living with FASD.
On International FASD Awareness Day, I encourage members to turn their minds to how we can better address the crisis of FASD in Western Australia . We have come a long way but we still have an awfully long way to go.