Sharman Stone (Murray, Liberal Party) Share this | Link to this | Hansard source

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That the motion be amended to read—That the House:

(1)    notes that:

(a) Foetal Alcohol Spectrum Disorder (FASD) is an overarching term used to describe a range of physical, mental, behavioural, learning and development disorders that can result from foetal exposure to alcohol; and

(b) FASD is reported to be the greatest cause of non-inherited, irreversible and permanent brain damage to new-borns in Australia; and

(2)    calls upon the Australian:

(a) Parliament to continue to facilitate and support the development of a FASD national diagnostic tool for the use of medical professionals and other health service providers; and

(b) Government to:

  (i) give those with FASD access to disability support funding and services, where appropriate;

  (ii) institute a campaign to raise community awareness of the risks to the unborn child when alcohol is consumed in pregnancy and highlight the potential cognitive and developmental consequences for affected individuals as these pertain to service providers, law enforcement and justice, the community sector and education; and

(iii) give support to the development of models of care and helping strategies for families and individuals dealing with the impacts of FASD.

Alcohol consumption in Australia is a widely accepted and long-standing part of our culture. It features in special celebrations. It is what we do to celebrate winning, a birth, even deaths. It is an important adjunct to dining out and it is a true marker of hospitality and friendly interaction amongst many populations and most individuals in Australia. What you drink, when you drink and how much alcohol you consume is supposed to mark you as a sophisticate or a knockabout type. Getting drunk, for some, for the first time is a rite de passage.

Drinking a little alcohol is not a health problem. It is, however, if you are pregnant or breastfeeding. If you drink when you are pregnant you are literally gambling with the welfare of your unborn child. Foetal alcohol spectrum disorder is the term used to describe a range of physical, mental, behavioural and learning disabilities that are a direct result of consuming alcohol during pregnancy.

Alcohol can harm an unborn baby in different ways at different times during a pregnancy. Alcohol is a neurotoxin and teratogin, meaning it is an agent which can cause birth defects and permanent brain damage in the foetus. The alcohol deprives the developing brain of oxygen and destroys the brain cells which in turn affects the growth, the structure and the function of the brain in the newborn. Alcohol consumption will affect the developing cells and organs differently depending on the stages of the pregnancy. In the first three months when the baby's organs are being formed alcohol exposure can cause a smaller head, heart defects, limb damage, bone formation defects, kidney damage, eye problems, hearing problems and facial abnormalities. All or some of these outcomes may result.

This is why the 2009 National Health and Medical Research Council's recommendations are for zero alcohol consumption for women who are planning a pregnancy or who are pregnant or breastfeeding. Tragically, these recommendations are a best-kept secret when it comes to many women and some health service professionals who should know better than to assure pregnant women that 'a little bit will not hurt you'. Some Australian research undertaken in 2006 found 34 per cent of women consumed alcohol in Australia in their most recent pregnancy. Other researchers suggested this figure could be as high as 60 per cent. In a 2003 survey at Lyell McEwen Hospital in South Australia, 80 per cent, or 70 women in all, reported consuming alcohol during pregnancy. Recent surveys have shown us rates of risky drinking are increasing in non-Indigenous women in Western Australian women of child-bearing age.

FASD is not curable. However, with early diagnosis and special support, children and adults with this condition can be helped to a better life. Our motion is about supporting as much as communicating and making sure those who should be delivering services to those in need are better resourced and know the job they have to do. The carers can be supported to have a better life and to have better strategies as they try to manage the condition in their loved ones, a condition which is incurable and lifelong.

This motion, which is bipartisan supported, aims to lift the lid on the effects of alcohol on the unborn and put the problem squarely in the limelight. We need to move away from the nonsense about a little bit will not hurt and have women and their partners understand that for nine months at least it is important not to gamble with the future, the lifetime of your child. We have pretended that drinking while you are pregnant is not a problem for far too long. We have ignored what Canada, the United States and most other developed nations have recognised and have been substantially investing in for years, and that is programs to educate and inform, programs to diagnose and programs to support those who are affected by FASD. We have a population of damaged children who are being misdiagnosed and misunderstood. Many of them are incarcerated and they remain unsupported because the condition is not acknowledged for the purposes of disability support. Our motion calls on that support to be given.

Our police and courts, teachers, doctors, nurses and other health service professionals are not sufficiently educated to understand the condition and its effects on individuals. Some may be, but are embarrassed to tell a mother of a newborn in difficulty that it was her drinking that may have caused the problem. Therefore there is much misdiagnosis and children with FASD are often labelled instead as autistic. This does not help when it comes to support services. We must understand that in order to change the rights of a child to be born without a preventable disability we have to make sure there is no misinformation in the community and no lack of understanding about what has to be done.

This motion calls for the support for those with FASD and their carers. Effective support includes special education, vocational programs, special tutoring and structured environments to minimise distress and antisocial behaviour.

A division having been called in the House of Representatives

Sitting suspended from 12:05 to 12:36

As I was saying before the division, this motion calls for support for those with FASD and their carers. Effective support includes special education, vocational programs, special tutoring and structured environments to minimise the distress, particularly in relation to antisocial behaviour and lifelong care. This motion calls for a national communications effort that will ensure that every woman and girl is aware of the connection between alcohol consumption and the chance that their baby will be born with incurable and permanent brain and other damage.

One of the problems in our country is that young girls are increasingly likely to binge drink. Those young girls put themselves into a situation where they may become pregnant and often it is many months before they realise their pregnancy. This of course is a serious problem for the unborn, for the developing foetus if those girls continue to drink, in particular to binge drink, during that first trimester. That is why it is so important that we have our population understanding the impacts, the connections between alcohol and developing foetuses and the fact that no drinking is indeed the only way to be absolutely sure that your child will not be affected by alcohol as it grows and develops in the womb. As I said before, the problem at the moment is that we have a growing culture of younger girls drinking and at the same time behaving in higher risk situations, also taking drugs and certainly not using contraception.

We already have some wine and beer companies voluntarily adding health warnings to their alcohol containers, bottles and cans. We need all of the sellers of alcohol to do that. It is an irony that in Australia we have some companies who have been exporting their wine for years in particular to California and other places in the United States adding the label warning that alcohol is a danger when pregnant but not using such a label in Australia. We need young Australians approaching puberty to understand the connections and we need to offer support to women and girls with a drinking problem who may become pregnant. We need also to ensure that their partners and boys of the same age—in fact the whole of our population—understands the connections between alcohol consumption during pregnancy and the dangers.

I have not mentioned Indigenous drinking to this point and nor do I want ever to let it be understood or believed that FASD is a problem specifically of Indigenous communities or populations throughout the world, because it is not. But the realities are that a lot of our Indigenous communities are drinking to excess. Alcohol is a real problem for a lot of our women and girls in Indigenous communities. I commend the Telethon Institute for Child Health Research and also this federal government, because already there are some incidence surveys being undertaken in places like Fitzroy Crossing and Halls Creek in Western Australia where the women of those communities have understood the damage being done by alcohol to their generations and have asked for support, firstly, in identifying how many of their children are affected and then how those children can be better supported to live as good a life as possible.

The tragedy for Indigenous communities is that their culture is transmitted through oral tradition and learning. It is not book learning. It is not a written down culture. If a generation of young children or a big number of them cannot learn, cannot in fact remember, or become fluent in reading, cannot participate in a ceremony and the traditional knowledge that they are expected as Aboriginal people to understand and transmit, if that cannot happen then it is in fact another form of cultural genocide. I think it is extraordinarily important that we understand that for Indigenous communities, particularly traditional Indigenous communities still with their culture, that they are given special help to make sure that alcohol is not the problem it now is.Women, whether or not they are Indigenous, need to be given special support if in fact they have a drinking problem.

I strongly commend this motion. I also commend Ministers Macklin and Nicola Roxon, who have supported this motion in the discussion. I am very grateful for the bipartisan support that we have had both in the Senate and now I trust in the House of Representatives. This is a problem that belongs to all Australians. It is one that has probably been with us since 1788. It is a problem that has no cure once a child has in fact been born with the effects of alcohol consumption, but it is a problem that we can prevent in the future and we can make sure those with the condition of foetal alcohol spectrum disorder have a better life, because there is better support possible for them and better understanding of their condition.

Sid Sidebottom (Braddon, Australian Labor Party) Share this | Link to this | Hansard source

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Foetal alcohol spectrum disorders, or FASD, is an umbrella term for a range of disabilities resulting from prenatal alcohol exposure. The syndrome was first described in 1973 by two paediatric dysmorphologists in the USA, Kenneth Jones and David Smith. That study and further research of FAS has identified three additional less severe syndromes known as FASD, or foetal alcohol syndrome disorders. These are: foetal alcohol effects, foetal alcohol related birth disorders and alcohol related neurodevelopment disorders.

The true prevalence of FASD in Australia is unknown, as the member for Murray pointed out earlier, and is believed to be chronically underreported in part due to the lack of agreed clinical guidelines and also a lack of understanding among both medical professionals and the general population about the risks of consuming alcohol during pregnancy. Indeed, there is an ambiguity to it. We have heard evidence from people who have spoken to our support group that some medical practitioners, for example, believe it is still okay to have some alcohol whilst being pregnant. Most of the evidence is clearly indicating that no alcohol is the preferred desired behaviour, but it is a message that is only slowly being taken on board even by the medical profession itself. We know that a lot of work is being done with midwives, for example, in trying to fully understand and explore this insidious disorder.

Data suggests that prevalence rates of FAS in Australia are between 0.06 and 0.68 per 1,000 live births in the general population. I know my friend the member for Blair has far more detailed information on this, but among Indigenous Australians it is between 2.76 and 4.7 per 1,000 births. Most accept these rates are under ascertained due to poor and ad hoc information, and indeed the limited skills and capacities in detection and diagnosis and the multiple barriers faced by women seeking help.

If I may, I would like quote from NOFASARD, a publication dealing with FAS, from June 2011. It quotes a research papers under the heading, 'Australia's first screening and diagnostic service for children with alcohol related birth defects could be up and running by the end of the year.' It goes on to state:

Elizabeth Elliott, Professor of Paediatrics and Child Health of the Children's Hospital, said it was hard to know exactly how many children were affected by FASD because of lack of research and diagnostic clinics. However, she estimates that at least two per cent of all Australian babies are born with FASD each year.

She states:

That is likely a significant underestimate because doctors are not recognising it and are not asking women about alcohol use in pregnancy.

It is as simple as that; they are not even asking. The consequences of that are absolutely considerable on all levels. If it does not register in terms of health and the social consequences, it will and would on the economic level, because they are very considerable.

It is estimated that FASD affects one per cent of all live births in the USA, for example, and FAS specifically affects between 0.5 and two per 1,000 births in the USA. The prevalence of FAS is much higher in terms of rates in some other countries such as South Africa, where it is quite extraordinary and is estimated to affect between 68 to 89.2 per cent per 1,000 children in Cape Province, for example. The same publication I noted earlier states South Africa has the highest recorded rate of foetal alcohol syndrome in the world, affecting more than one million residents, and is being urged to take action against the preventable medical condition, the impact of which has been labelled as devastating as HIV. HIV is recognised and known now. What we are talking about is something as prevalent and yet unknown or greatly misdiagnosed. The country has the highest recorded rate of foetal alcohol syndrome in the world that we know of. The country's leading experts estimate more than one million South Africans have been damaged by their mother's drinking while they were pregnant.

That leads us to this undeniable fact, that FASD are preventable but are incurable and require a lifetime of care and support. So, FASD, as I mentioned, are preventable, it is incurable and it is a lifetime sentence. That is a significant statement about a behaviour that we can get rid of or we can stop. It really does beggar belief that we allow this to continue. Our support group demonstrated this in this chamber today, and many others are working towards eradicating this. This is just totally and utterly unacceptable. FASD are a leading cause of preventable non-genetic birth defects and intellectual disability in Australia—and I will repeat it—preventable non-genetic birth defects and intellectual disability, but it does not even officially rate as a disability. Our motion calls on our government—indeed all parties—to support this and recognise it as a disability.

While FASD is a leading cause of non-genetic intellectual disability, another major issue of concern is that the majority—that is, 75 per cent to 80 per cent of people—living with an FASD actually have a normal IQ but struggle with everyday living skills making accessing developmental disability services very difficult. Foetal alcohol syndrome is often considered to be the most serious of the disorders within the spectrum. A person living with FAS will have a brain injury, impaired growth, neurological deficits and facial dysmorphology. The difficulties experienced by people with FASD can include difficulty with mathematical concepts; time and handling money, thinking things through and learning from experiencing, understanding consequences of their actions or the concepts of cause and effect, difficulty with social skills, difficulty storing and retrieving information, including following instructions, and finally impulsivity and distractibility—all basic living skills and all behavioural issues that we can affect. By not drinking during pregnancy we can bring this to a halt.

I will conclude by just pointing out as I did earlier that foetal alcohol spectrum disorder does not have a disability status in Australia. The situation relegates this condition to the status of non-entity; minimises public perception and service provider perception of the real scope of the problem, perpetuates belief in the limited risks posed by lower doses of alcohol, and fails to acknowledge the rate of incidents that has been contrasted to other non-genetic causes. Having it registered as a disability in Australia brings credibility to at least four decades of contemporary knowledge and research on alcohol as both a teratogen and a substance toxic to healthy foetal development. (Time expired)

Mal Washer (Moore, Liberal Party) Share this | Link to this | Hansard source

I rise to support the motion proposed by the member for Murray and supported by the member for Braddon and the member for Blair, and to acknowledge the advice and support provided by Anne Russell from the National Organisation for Foetal Alcohol Syndrome and Related Disorders, NOFASARD, as the previous member noted. In the absence of foetal alcohol spectrum disorder, or FASD, prevalence study in Australia it is difficult to convince government or the public on the significant risk this issue poses for Australia. Dr Elizabeth Elliott, in the Australian on 20 June this year has suggested Western nations might well have a prevalence rate of somewhere between two and five per cent. This is based on epidemiological research in 2009 by Dr Philip May and colleagues in the USA. What is more accepted is an increasing incidence of FASD linked to better detection, the momentum of FASD awareness in North America and better preparedness of service providers to respond to the needs of children and education and social support services.

There is a current prevalence research study called the Lililwan Project in Fitzroy Crossing in northern Western Australia investigating FASD in this Australian Aboriginal community. It was initiated as a consequence of community lobbying and the need for an evidence base to support local prevention strategies. Multidisciplinary teams have been engaged to conduct assessment and diagnosis, record data and provide case planning for optimum outcomes for children. Data from this project will provide invaluable information on the prevalence of FASD in Aboriginal communities.

It is critical to support any community where FASD is overrepresented, but it is also critical that we do not lose sight of the reality that FASD is not just an Indigenous issue. Alcohol consumption in Australia is not limited to Aboriginal communities. There is ample evidence to support high rates of alcohol consumption in the non-Indigenous community. International comparisons show that Australians consume 8.89 litres; Canadians 7.7 litres and the US 8.44 litres per capita each year, and to determine prevalence a much wider study needs to be undertaken. Some suggest that over 200,000 Australians may be affected by FASD, and that means one in 100 live births. This rate is higher than the incidences of autism, Aspergers, ADHD and Down's syndrome. It is likely that FASD could be the most common preventable type of intellectual disability.

The second critical factor is the reliance on IQ as a measurement of disability. Seventy-five to eighty per cent of patients with FASD have been found to have an IQ in the normal range. Average or higher IQ scores often preclude special needs funding and/or service opportunities. In addition, the inherent limitations of a traditional IQ test restricts their usefulness in directing effective strategies. A study on the relationship between FASD and IQ undertaken by the University of Alaska has found that fewer than 35 per cent of individuals with FASD would have qualified for special education, given the criterion of an IQ under 71. For people with FASD an IQ assessment will not identify the often uniquely individual presentation of disabilities nor the seriousness of the brain damage. Whilst a diagnosis of foetal alcohol syndrome may rely on facial dysmorphology, there remains the conundrum of distinguishing other conditions within the spectrum. Particular skills and training required to accurately assess executive or adaptive functioning and the involvement of neurophysiology and occupational therapy.

Yvette D'Ath (Petrie, Australian Labor Party) Share this | Link to this | Hansard source

I will ask the member for Moore to take his seat. The member for Shortland on a point of order.

Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

I am sorry that I have to do this to the member that is speaking, but the time for this debate has expired and I would like to move that the debate be adjourned to a later time at the next sitting day.

Yvette D'Ath (Petrie, Australian Labor Party) Share this | Link to this | Hansard source

According to the standing orders the time has not expired in relation to this debate.

Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

Further to the point of order, my understanding is that there was a set period of time allocated for this debate. The mover of the motion started to speak and once she starts to speak then the time is counted from then, as is the case with what happens in the House once a motion has been moved.

Yvette D'Ath (Petrie, Australian Labor Party) Share this | Link to this | Hansard source

I have been advised that the correct calculation of the time is that it is suspended while the main committee has risen; the 50 minutes has not expired at this point.

Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

Further to that point of order—and I am sorry for eating into the member's time—on other occasions that has not been the case, so I would ask that you check that for future.

Yvette D'Ath (Petrie, Australian Labor Party) Share this | Link to this | Hansard source

I certainly will check that. I will give the call to the member for Moore.

Mal Washer (Moore, Liberal Party) Share this | Link to this | Hansard source

I will continue. Speech and language therapy is critical. The adverse effects of foetal alcohol exposure also mean that there needs to be investigating and planning for social support systems in the post-diagnosis period to account for cognitive and developmental disabilities. The National Organisation for Foetal Alcohol Syndrome and the Related Disorders, advocates for patients and carers, state that many who contact NOFASARD identify the barrier created by IQ as well as a determining factor in diagnosis, and seek support for those in their care where maternal alcohol use is presented as reliable evidence.

There are multiple implications across the lifespan for any individual living with FASD. Although brain damage has a profound effect on behaviour, it is a problem behaviour that often leads to stereotyping. Most working in health and human services, education, justice and other service provision areas have not yet developed an understanding of the learning and memory impairments, the poor judgement skills and the poor consequential thinking abilities, the limited skills in making friends and maintaining relationships, which are often the hallmarks of FASD. Service providers have not had appropriate training and have limited perception of the power of labels like 'belligerent, defiant, lazy and uncommitted to individual change'.

This month, August 2011, the FASD Australian collaboration will present a national diagnostic and screening protocol. Once applied, accurate diagnosis contributes to better detection, improved data collection and most importantly the opportunity for early intervention, not just to support the individual, but in the case of children, more appropriate support for parents. An older sibling's diagnosis with FASD is one of the more powerful indicators of future exposed pregnancies and a critical point for prevention.

Foetal alcohol spectrum disorder does not have current registered disability status. This situation relegates the condition as a non-entity, minimising public perception and service provider perception of the real scope of the problem, and perpetuates beliefs in the limited risks posed by lower doses of alcohol. It also fails to acknowledge the rate of incidence which has been contrasted to other non-genetic causes.

There is something powerful and at the same time threatening in listing FASD as a recognised disability. While it brings credibility to at least four decades of contemporary knowledge in alcohol as both teratogenic and toxic to healthy foetal development, it brings another dimension to the harms alcohol causes in society. There is no defence of choice where an unborn child is concerned. There is no evidence that this disability is a burden of some population groups and there is no avoidance or opportunity to mask the condition by proposing it as another malady with unknown cause.

There has been resistance to the call for listing FASD as a disability and Australia has the opportunity to lead the world in legitimising the claim. To do less will continue to fill our prisons, absorb child protection and out-of-home placement resources, overload special education, overwhelm parents and supporters who are doing it tough. A national awareness campaign is the primary prevention opportunity to deliver clear information to the Australian community to effect changes in behaviour and attitude. It is the first step which needs to be supported by labelling and signage in all liquor outlets and curriculum education and skills.

Edith Cowan University has completed research on best practice for disseminating public information messages on FASD. This message could be similar in style and format to the message 'One punch can kill' where a mother or actor can give an account of how it has affected her and her family.

The NOFASARD network of parents and carers is a source of evidence from lived experience. Disclosures reveal the continued experience and advice by medical practitioners of the relative safety of low level alcohol consumption, which is a national tragedy. (Time expired)

Debate adjourned.