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Standing Committee on Social Policy and Legal Affairs
24/11/2011
Foetal alcohol spectrum disorder

ELLIOTT, Professor Elizabeth, Professor of Paediatrics, consultant paediatrician, Lililwan Project Chief Investigator, the Children's Hospital at Westmead Clinical School, University of Sydney Medical School, The Lililwan Project Collaboration

FITZPATRICK, Dr James, Paediatric Senior Registrar/Research Chief Investigator, the George Institute for Global Health, University of Sydney, Lililwan Project Chief Investigator

LATIMER, Professor Jane, Senior Research Fellow, the George Institute for Global Health, University of Sydney, Lililwan Project Chief Investigator

OSCAR, Ms June, Chief Executive Officer, Marninwarntikura Women’s Resource Centre, Lililwan Project Chief Investigator

Committee met at 10:24

CHAIR ( Mr Perrett ): I would like to acknowledge the Ngunnawal and Ngambri people, the traditional custodians of this land, and pay our respects to the elders, both past, present and future. The committee also acknowledges the present Aboriginal and Torres Strait Islander people who now reside in this area and thanks them for their continuing stewardship. I welcome representatives of the Lililwan Project to discuss the issue of FASD in the Fitzroy Valley. I apologise that we do not have the full committee present today, but we are living in the slightly interesting times at the moment. We will treat this as an informal hearing because we need one other member to be quorate. We will circulate the minutes, but this part of the hearing will not be broadcast. Would you like to make an opening statement before we move to questions?

Prof. Elliott : Thank you very much for having us appear before you today and for having the insight to set up an inquiry into this very important issue of foetal alcohol spectrum disorders. As you know, these disorders are tragic but preventable outcomes of exposure to alcohol during pregnancy. There are a range of disorders with a range of severity, but they are lifelong disorders and they involve problems with health, mental health, learning and behaviour. This is a problem that continues into adulthood, so these adults who have foetal alcohol spectrum disorders have ongoing problems with unemployment, mental health, drug and substance abuse and difficulty in living and working independently.

We are unaware of exactly the size of this problem in Australia. However, at the moment we are in the process of conducting the first population based prevalence study of foetal alcohol spectrum disorders in the Fitzroy Valley, which is 45 remote communities in the Kimberley region about 400 kilometres east of Broome. This project was in response to a community led initiative to develop a strategy to address foetal alcohol spectrum disorders which they consider a priority in their community. We believe that the community role is critical and that the findings that we get from the study will inform your inquiry. We have prepared what we have called a preliminary submission and have provided some general recommendations. We will be preparing a more detailed submission to address the terms of reference of the inquiry—namely, prevention, intervention and management. Briefly to summarises, we do believe that with regard to prevention there is a need for some sort of national public health campaign to raise awareness about the potential effects of alcohol in pregnancy. This should commence at school age. It should be a broad, community based campaign and it should target high-risk groups.

We believe there is a need for some research to evaluate what prevention strategies have been effective overseas. There is a need to improve access to services which treat women who have problems with alcohol. There is a need for health professional education, and we have good evidence for this from studies we have done recently, again to raise awareness of the need to identify women at risk early and hence identify the children potentially at risk. We are aware that the NHMRC has a very good policy on alcohol use in pregnancy, but believe that this needs to be better disseminated and used by health professionals and in the community.

We believe there is room for legislation to enable prevention. The legislation may include a whole range of areas such as volumetric tax on alcohol, community initiated restrictions, support of legislation for dry communities and responsible marketing and sale of alcohol products. We believe there is room for legislation for warning labels on products, which already happens when our alcohol goes to North America, and that labels should be clear, prominent and include an indication of how many standard drinks are included in that beverage. We believe we should be thinking much more broadly about issues such as advising women on the role of contraception if they are women who are engaging in high-risk drinking behaviour and are of childbearing age.

To move on to interventions, we would like to stress that these interventions really need to be lifelong interventions. As I have already mentioned, these are problems that continue into adolescence and adulthood. You may be aware that the government has funded a project to look at a national screening and diagnostic approach. We believe that once that is finalised those recommendations should be adopted for use in Australia. We believe that there needs to be better education about alcohol and its effects on mother and baby through all sorts of health professional and education curricula. There also needs to be an increased diagnostic capacity, both through training of health professionals and provision of facilities and, again, awareness. As new treatments are evaluated—and there is very little good evidence for specific treatments for children with FASD—they need to be modified or assessed to see if they are appropriate to the Australian setting and, if so, implemented.

We do need to look at the issue of what is classified as a disability and make sure that children with the full spectrum of alcohol related disorders are eligible for allowances such as disability allowance, carers allowance et cetera, and for additional help in the classroom. Sometimes this is just a definitional problem, but we need to make sure that these children are included in that group. An important point that June made is that we need to look at alternative education models for these kids. Often they are kids who have limited intellectual capacity. It is not right to keep them struggling in the classroom which they find hard and often boring. We need to have a curriculum for life, rather than an academic curriculum, to suit these kids.

With regard to the third issue, management, we believe that we need to engage a wide range of agencies beyond health and education, including policy and disability services, child protection, employment, training, housing et cetera. We do believe that we need to review international best practices in making sure that if there is good evidence that management of the community schemes to manage this problem in the community do work. If so, we should be able to adopt those strategies. June and her colleagues—and she will speak to this—have come up with a model for a collaborative circle of community care really to support parents and carers and to coordinate the health, education and other needs of these children and their families. We certainly would support that model.

Finally, we have a couple of general recommendations relating to people that you may wish to consult. We would like to invite you to visit the Fitzroy Valley which has been a leader in this area of addressing the prevention and the diagnosis of foetal alcohol spectrum disorders and support for parents and carers. We would suggest that you might like to consult with the members of the Lililwan project team. There are four of us here, an additional Chief investigator and 10 or 11 other clinicians who have worked in our multidisciplinary team. We suggest that you may like to consult with the Human Rights Commission. I know the Disability Commissioner, the Social Justice Commissioner and the Sex Discrimination Commissioner are all interested in this area. We have had contact with Blake Dawson solicitors who are interested in not only helping us in our project but also looking at this issue of disability and the rights of the child with intellectual and other disabilities.

CHAIR: But they have a particular support for this, don’t they? We have seen a presentation here at parliament.

Prof. Elliott : They do. I understand they will be submitting to the inquiry. We have a number of other groups that we feel it would be worth your while consulting, although I am sure most of these will be putting in a submission: the Telethon Institute for Child Health Research’s Professor Carol Bower, consumer groups such as NOFASARD’s Ms Sue Myers and the Russell Family Foundation which you are familiar with, and the Foundation the Alcohol Research and Education. These are key groups that are working in this area. I would like to finish by again thanking you for your interest in this subject which we are very engrossed in.

CHAIR: Would anyone else like to make a comment?

Ms Oscar : This whole process of initiating the Lililwan Project and developing the overarching Marulu strategy by our community is something the community has been discussing and planning over a number of years. It all came to a head in July 2007 when the women in our community decided that it was time we took a strong stance on the way in which alcohol was devastating the lives of many in our community. We focused on pursuing alcohol restrictions which gave respite to the community and in the months that followed the women made FASD a priority area that we wanted to address from the community. We sought out the assistance of government and our current partners. We noted that we cannot do this alone as a community and government cannot do it on its own. It needs a whole network of people and hence we have come up with a collaborative model of how to pursue this issue. Having just gone through the Lililwan Project and the diagnosis and assessments, now the parents of those children are receiving the report. We are now focused on how to support these children and their mothers and carers. We have developed a model of care that we would like to submit for your consideration as part of the process.

CHAIR: Is this a model which is in practice—I want to get the language right?

Ms Oscar : We have trialled this model, so we know it will work. It is this model we are seeking support for to add to the next stage of support for these children and their families.

CHAIR: If you do not mind my asking, physiologically what happens? What is FASD?

Prof. Elliott : Alcohol is a teratogen; that means it is a poison which can damage the brain, particularly of the child.

CHAIR: So it is passed through the placenta.

Prof. Elliott : Through the placenta into the bloodstream. To go back, when the woman is drinking in pregnancy, the more she drinks the higher the blood-alcohol level. Very quickly that blood-alcohol level in the mother equates to the blood-alcohol level in the foetus.

CHAIR: That foetus is building new cells.

Prof. Elliott : It is rapidly developing. Particularly in the first three months of the pregnancy, there is a very rigid pattern of development of various different organs and there are key times that exposure to alcohol may result in a certain birth defect. Say the heart is developing at a time when there is a heavy level of alcohol use, the heart may be disrupted and the child would have a birth defect.

CHAIR: Disrupted cells do not develop properly?

Prof. Elliott : That is exactly right. The normal formation is disrupted, so you may have a malformation of that organ. That can apply to the eyes, the ears, the heart, the kidneys.

CHAIR: All sorts of organs can be affected at different stages depending on when the mum is on the grog.

Prof. Elliott : Exactly. The first thing is birth defects.

Dr STONE: That makes the diagnosis complex because children present differently.

CHAIR: That was going to be my next question.

Prof. Elliott : In the first trimester, the brain is damaged. The brain controls the development of the face, and the body organs may be damaged. But by the end of the first trimester, most of those physical features have formed. However, the brain continues to rapidly develop, and we know that alcohol will continue to damage the brain during the second and third trimesters of pregnancy. Hence, as Sharman said, there is quite a difference in the presentation from children with birth defects, brain problems and failure to thrive and grow through to children who do not have any physical manifestations but may have behavioural problems, learning problems, emotional problems and mental health problems. Quite a lot of work from animal models suggests that alcohol stops the migration of neurons and the connections being made, for example. It increases cell death.

CHAIR: So there would not be as many pathways through the brain.

Prof. Elliott : Exactly.

CHAIR: That was how my wife explained it to me. They might be able to do simple tasks, but not higher-order tasks.

Prof. Elliott : Exactly, and again there would be a whole range of capabilities. Quite interesting data is coming out of Queensland, and I will try and get hold of that for our submission. They have been able to map the connections in the brain and what is happening when people are asked to do a certain task. So there is a lack of connections, lack of normal structure of the brain, increased cell death and lack of production of what we call neurotransmitters, the chemicals that transmit an instruction from one nerve to another. We have very good evidence that this is toxic to the brain and that it may affect the development of a range of other organs, and that there is a wide range of clinical presentations. But many of the children, even without the physical characteristics, are as functionally impaired as those who also have the physical characteristics.

CHAIR: If I turn to the DSM IV there might be some physical characteristics for FASD, but you said there were problems with definitions. Are these problems for people who write the text books, for the clinician who is trying to assess the child and for the school that needs to get funding for the disability these children have? Please expand on that.

Prof. Elliott : There are diagnostic criteria. In our study we have adopted international criteria. For example, for foetal alcohol syndrome you require evidence of either structural abnormalities of the brain or functional problems of the brain.

CHAIR: Does that require an MRI?

Prof. Elliott : A small head or an MRI finding. Functional problems might be learning problems, developmental problems, behaviours et cetera.

CHAIR: Those could be connected to other things.

Prof. Elliott : They could be, but for the diagnosis of foetal alcohol syndrome you need all of these: structural or functional brain problems, growth problems and abnormal facial features. That makes it a relatively easier diagnosis than further down the spectrum where you will not have the abnormal facial features, but will have a range of behavioural and learning problems. That is where the confounding comes in. How can you attribute those developmental problems to alcohol, particularly if there are other issues in the family? That is the thing that clinicians grapple with. The approach we have taken is to do a very comprehensive assessment of speech and language, fine motor skills, gross motor skills, learning, IQ et cetera.

CHAIR: Do you ask mum if she was on the grog?

Ms Oscar : Yes, but we have to be very sensitive in asking about whether they drink.

Prof. Latimer : Officially we do not.

Prof. Elliott : We use quite strict criteria to diagnose the neurodevelopmental components. We have called it neurodevelopmental disorder alcohol exposed. You would not diagnose that without the confirmed alcohol exposure.

Prof. Latimer : James might like to give an idea of how many of those children who look normal but whose brains have been damaged by the alcohol their mothers drank on the spectrum versus those that have the foetal alcohol syndrome and have the characteristic facial features, and the proportions of those.

Dr Fitzpatrick : I will take us one step back. FASD is not a diagnosis in itself. It is an umbrella term and there are three specific diagnoses under that umbrella term. As Liz said, at the more severe end of the spectrum there is something called foetal alcohol syndrome and you use the word ‘syndrome’ if there are physical features associated with it. That is where you have the facial features and there are three specific facial features which include small eye slits, a smooth philtrum above the upper lip so you lose the gutter and a thin upper lip. This is all under foetal alcohol syndrome: the facial features; the abnormalities of the brain, either the structure or the function; and growth impairments. Those are either babies that are born small or children who do not grow well after birth and, as you mentioned, confirmed alcohol exposure. Actually, in foetal alcohol syndrome, you do not need confirmed alcohol exposure because it is such a typical—

CHAIR: It is a trigger.

Dr Fitzpatrick : So that is the more severe end of the spectrum. Then you have partial foetal alcohol syndrome, which is where you have two out of the three facial features, plus the brain abnormalities, plus alcohol exposure. So there are fewer physical features, however you still have the brain dysfunction. Then, as Jane has just mentioned, the harder to identify diagnosis is called neurodevelopmental disorder—alcohol exposed. That is when you have a child that looks perfectly normal, who can be well grown, however, has specific abnormalities of the brain function or structure, plus confirmed alcohol exposure. As it is mentioned, with the developing brain the whole brain can be affected but there are specific areas of the brain that are particularly targeted by alcohol, for example, the hippocampus, which controls memory formation, or the amygdala, which is involved in emotional regulation and impulse control and then the frontal lobes, which are involved in executive functioning and planning. When we do our diagnostic testing with a clinical team, we specifically look at the child's function in those areas and we look for those specific impairments.

CHAIR: And a diagnostic tool can sort through that specifically?

Dr Fitzpatrick : Yes.

Prof. Elliott : We would, for example, meet abnormality of function in three or more of those central nervous system domains. So we use quite strict criteria. We are conservative. To come back to your point of confusion of diagnosis, these are diagnoses of exclusion. We need to make sure as paediatricians that the child has not got a chromosomal disorder producing a syndrome that et cetera.

CHAIR: In terms of overlapping symptoms, is that—

Prof. Elliott : It is very difficult to tease that. For example, many children have attention deficit hyperactivity disorder but most of them are not exposed to alcohol in pregnancy. So children may have those symptoms which may be confused with other disorders, but we would not make a diagnosis based on as much as a simple symptom. We really have to make a diagnosis based, as I said, on three or more abnormalities in those functional central nervous system domains. It is quite a complex process.

CHAIR: Historically, Anglo Saxons have drunk a lot of alcohol—or have a history of drinking alcohol—so has it been around for a long time?

Prof. Elliott : Absolutely. There are very early descriptions of children affected by alcohol. Back in the early 1970s Lamoine in France in the first scientific publication described children born to alcoholic mothers. In early paintings and manuscripts there are reports—

Prof. Latimer : June, just thinking about in your community, women only started to drink more in—

Ms Oscar : In the eighties.

Prof. Latimer : In the eighties when the gold flowed in. June can explain the setup there. That is why it is a reasonably recent phenomenon in some communities like June's.

Prof. Elliott : Sorry, if I can finish, the first description in the English medical literature was only in 1973 by Ken Jones, who again described a series of malformations in children born to chronic alcoholic mothers. It is a fairly recent phenomenon, which is why we have made the recommendation that it needs to be incorporated into medical and other health professional curricula.

Ms Oscar : However, educators have pointed out that in biblical times there were references made —I do not know what chapter or what book—that these children were born to 'Ruth', or someone, and that they were different. I have heard that time and time again from educators.

Prof. Latimer : One thing when reading our studies that report prevalence data, often the prevalence data they report just relates to the foetal alcohol syndrome. So you will see they cite quite by values because of the complexity of diagnosis of the upper parts of the spectrum. This is why this study that we are completing now will set an accurate prevalence for the whole spectrum. In fact we understand that the children who are on other parts of the spectrum have as many problems and, some would suggest, perhaps more than those who are recognised very early on with foetal alcohol syndrome.

Dr STONE: It is harder for the child who looks normal, so to speak, to then be seen as perhaps not fully responsible for their actions when in fact they are not. People can say, 'That child does not look as if they have any disability. What is this excuse that they are making?' I think that is terribly difficult. While we are on this topic in this hearing, you have just mentioned the problems and that in the last 40 years this material has come forward in the scientifically valid medical literature about this condition. I meet regularly, as I am sure you do, obstetricians, gynaecologists who deny that there is such a medical problem. Just in the media in the last couple of days we have had a gynaecologist—obstetrician, I think she was—quoted saying 'the jury is still out' about whether or not alcohol is a problem for women in pregnancy. As part of your work, are you seeing any work being done anywhere else in Australia which specifically targets the medical profession with in-servicing updates of their information, or in the training, while they are still in the training years, saying that no medical graduate, midwife, nurse for that matter or even allied health professional should leave or finish their preliminary training without being exposed to the information about alcohol and pregnancy, or even breast feeding as well?

Prof. Elliott : You raise a very valid point and, as I said, that is one of our recommendations. When I was on the intergovernmental committee on drugs working partly on foetal alcohol spectrum disorders, we at that time did an audit of medical school and other curricula and it was very poorly represented. So we certainly made recommendations. The monograph that arose from that committee is still waiting publication and is currently—

Dr STONE: We need to make a note of that, Chair. This monograph is now 18 months old.

Prof. Elliott : Yes. In fact, we have now got some funding from the department to update it. It is in the process of being updated. We hope that that process will be finished by the end of this year. Certainly, that would be a recommendation, that there is an increased awareness. I was involved in several surveys of all health professionals in Western Australia. I think you referred to that study earlier. It indicated that doctors—GPs, obstetricians or whatever they are—and nurses are not asking about alcohol use in pregnancy and so are not picking up the potential children at risk. They are worried about asking, worried about stigmatising people and furthermore, they just do not know the effects that alcohol may have and what to advise women. So, there is a big educational need there.

CHAIR: Do drugs—marijuana or something like that—have a similar effect?

Prof. Elliott : Ken Jones, who first described these conditions in the English literature, works in the US and spends a lot of time and deals with a lot of people exposed to other drugs. They do not cause these same features.

CHAIR: Is it a continuum so that every glass of wine will have some effect? Is it accumulative or is there a safe drinking level? I know that the suggestion is none at all.

Dr Fitzpatrick : There is no known safe level. You cannot do a study of humans to try to determine what is a safe level. You cannot ask a certain number of mums to drink one standard drink once a week during the pregnancy.

CHAIR: I would have thought that for something like over the last 50 years some mums had been drinking alcohol.

Prof. Latimer : There is some proposed study, which is an observational study, where they are looking at women. Liz, you have an eye set on this as well.

Prof. Elliott : There has been some data from Western Australia, from big cohort studies looking at this that says it is a dose response. The more you drink the more likely it is to do harm. But it is also dependent on the frequency of drinking, the timing of the drinking and a whole lot of internal factors such as genetics and the metabolism of alcohol.

Dr STONE: Genetics? So you are suggesting some people have more ability. Anecdotally, we are told that some people of Asian background have greater difficulty in being able to metabolise alcohol.

Prof. Elliott : Similarly, people have different body mass and body composition, different age, different existing liver function. It is a very imprecise science clinically.

CHAIR: Okay, so 'none' is the answer.

Prof. Elliott : We take a precautionary approach. It upsets me that there are people—obstetric colleagues—who say the jury is out because what women want—and we have done surveys of women nationally—is a clear message. Ninety-six per cent of them in a study by Liz Peadon, one of my students, said that they wanted to be told not to drink during pregnancy. They want a clear message; they want guidance from doctors.

CHAIR: This is where my lack of knowledge comes into it, but post birth, if you are breast feeding, some alcohol goes into milk, does it not?

Prof. Elliott : Exactly.

CHAIR: Is that a different process?

Prof. Elliott : Yes. Alcohol goes into the breast milk and those babies are shown to be more irritable, have disrupted sleep—

CHAIR: Their brains are still developing. Can you acquire FASD post birth?

Prof. Latimer : No, it is already there.

CHAIR: That would be a slightly different problem.

Prof. Elliott : A different issue.

CHAIR: My last question before we get thrown out is: are there FASD hot spots in the world where we could find best practice and have you looked at that? Are there other strong drinking communities?

Dr Fitzpatrick : There are. In terms of prevalence studies a group from the US is doing studies in Russia, in Italy and in South Africa as well as the US. We have visited their teams and clinics.

Prof. Elliott : And Canada.

Dr Fitzpatrick : And the Canadians as well are doing a lot of good work. We used a modified version of the Canadian diagnostic guidelines in our study and we favoured the Canadians' approach to diagnosis. They also have a lot of models of community care that have informed what is happening in the valley.

Prof. Latimer : We have used some of them as clinicians on our clinical teams. They know the best practice, they understand the context in Australia and they have gone back home to think about how they might modify things so they work in with us.

Prof. Elliott : Just one point with regard to intervention: we have to realise that there is no treatment for this. Prevention is what we are aiming for, but we can help children by identifying their range of leads and strengths and targeting those.

CHAIR: The existing program for special needs kids—can they be cookie-cut-off and used for FASD kids?

Prof. Elliott : Yes. Those clinicians would need to identify the specific problems that that child had and recognise what were the most common problems in FASD. However, yes, we should be using existing child development services for assessment and acknowledgment of a range of children with complex disabilities and complex learning needs.

CHAIR: Can it be manifest as an IQ so that not everyone gets to be a brain surgeon but can push the trolleys or other tasks in society?

Ms Oscar : Absolutely, and that is what my organisation is turning its mind to. How do we deliver the appropriate and relevant type of training for employment, therapeutic economies and social enterprise? We will submit that to the committee.

CHAIR: I apologise that we have to be out.

Dr STONE: Before we go, Chair, you very clearly are the leaders in Australia in terms of being actively pursuing programs and incidents and all of those sorts of dimensions. You are preparing a written submission for us but we may, if we can, ask you back to give us more information as we go along.

CHAIR: I would flag early, without the committee here, that I would like for us to meet in Fitzroy Valley. That would be my intention. Diary wise, I am not sure whether that means you will go there or we will meet you there.

Prof. Elliott : It needs to be after March.

Prof. Latimer : After the wet season because we might not be able to get in there. We might get locked out.

CHAIR: The committee will flag that and get those dates early.

Dr STONE: We need to stress too, which we have been doing in this conversation, that, while Fitzroy Crossing is preeminent in tackling this problem via its magnificent, courageous Indigenous community and the women in particular, it is not an Indigenous issue per se.

CHAIR: No, we will not be approaching it in that way at all.

Dr STONE: But being led by the Indigenous women's understanding.

Committee adjourned at 10:59