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Community Affairs References Committee
Effective approaches to prevention, diagnosis and support for Fetal Alcohol Spectrum Disorder

BOWER, Professor Carol, Co-Director, FASD Research Australia Centre of Research Excellence, Telethon Kids Institute

ELLIOTT, Professor Elizabeth, Co-Director, FASD Research Australia Centre of Research Excellence, Telethon Kids Institute

PASSMORE, Dr Hayley, Research Officer, FASD Research Australia Centre of Research Excellence, Telethon Kids Institute

Evidence was taken via teleconference—


CHAIR: Welcome. I invite you to make an opening statement, and then we'll have lots of questions for you.

Prof. Bower : Thank you for the opportunity to present today. FASD Research Australia is a centre of research excellence funded by the National Health and Medical Research Council. Through our research we aim to provide evidence to address prevention, diagnosis and management of FASD and to build capacity and FASD research in Australia. By way of introduction and in support of our submission, Elizabeth will speak briefly about diagnosis and Hayley on FASD in the justice system, and I'll make some remarks specifically about mandatory pregnancy warning labels on alcohol.

We didn't refer in our submission to warning labels on alcohol, which is why I want to talk about them now, but this is especially important at the moment as the Australia and New Zealand Ministerial Forum on Food Regulation recently voted not to accept the label proposed by Food Standards Australia New Zealand and referred it back to review. Ministers say that they're committed to mandatory pregnancy warning labels but resiled from the colour, which was red, and the wording of the health warning: 'Alcohol can cause lifelong harm to your baby.'

Along with many others, Elizabeth and I contributed to FSANZ's careful, evidence based development of the proposed warning label, which included expert input, literature review and community surveys. Each element of the label was chosen for its effectiveness based on research evidence. Changing any element would be choosing to make the label less evidence based and less effective. It simply doesn't make sense. So we strongly support the FSANZ proposal to raise community awareness of the importance of prevention through using an evidence based and effective label.

Resistance, we understand, comes from industry, who say that the costs of adding this label would be disastrous. However, what is disastrous is FASD, and Elizabeth is going to talk to you now about that.

Prof. Elliott : I'd just like to say that, in addition to being Co-Director of FASD Research Australia, I'm a paediatrician and head of the NSW FASD Assessment Service. Making a diagnosis of FASD recognises that there has been a brain injury caused by prenatal alcohol exposure, yet our research, as you heard from the Murdoch Children's Research Institute, shows that 60 per cent of women in Melbourne, Sydney and Newcastle who attend antenatal services still drink alcohol during pregnancy, often at risky levels. Our earlier research suggested that, despite these high levels of drinking, FASD was underdiagnosed in Australia. To address this, we published the Australian guide to the diagnosis of fetal alcohol spectrum disorderin 2016. In reference to earlier witnesses, we've provided extensive clinical training across the country in diagnosis. We've also developed, and now maintain, the FASD Hub Australia, which is a website providing information about FASD and including a service directory for diagnosis and management. Both of these, the guide and the hub, have been funded by the Australian government.

Our current research is through the Australian Paediatric Surveillance Unit, and we run a FASD register. In contrast to the evidence given by AIHW, we know that diagnosis now occurs throughout Australia. In the last five years, 2015 to 2019, paediatricians around the country have reported over 590 children newly diagnosed with fetal alcohol spectrum disorder and severe neurodevelopmental impairment. Diagnosis is often delayed, and access to ongoing care and NDIS support is difficult.

Although we now have diagnostic services in most states and territories, access is limited by long waiting lists. There are inevitable restrictions by age and cost. Funding is very variable. Clinics are funded by states and territories, by the Australian government or by private enterprise, and it's often short term. Assessments are often limited by the capacity to employ a multidisciplinary team, and services are patchy, particularly in rural and remote settings.

So we do recommend an audit of diagnostic services and/or funding. We support ongoing training in diagnosis and trauma-informed care. We believe there must be funding of research into novel diagnostic techniques—some of those mentioned previously by MCRI—and review of the guide for diagnosis, and we do feel that we need high-quality trials to evaluate the efficacy and cost-effectiveness of new interventions before their introduction into Australia.

I'd now like to pass over to Hayley Passmore.

Dr Passmore : We know from international evidence that FASD is more prevalent in vulnerable populations, such as in child protection, psychiatric care, foster care, special education and justice settings. Our team recently completed the first FASD prevalence study in an Australian justice system and found that 36 per cent of young people in detention had FASD. While this is a conservative estimate, it is now the highest known prevalence of FASD in any justice setting worldwide.

This overrepresentation of FASD in the justice system could be prevented through the provision of diagnostic and intervention services earlier in a young person's journey, such as through leveraging engagement with education, health and, in some cases, child protection services. International estimates of the economic burden of FASD suggest that corrective services are the second-largest cost associated with FASD, surpassed only by productivity losses across a lifespan.

I have consulted broadly with frontline justice professionals and have consistently found a need for more training in how to manage and support affected individuals. Staff working with these vulnerable populations want to know more and they want to do their best to support and rehabilitate them, but they need adequate knowledge and resources to do so.

I'll now pass back to Elizabeth to conclude.

Prof. Elliott : In summary, we believe that we need ongoing funding to support research on prevention, diagnosis and management of FASD, and the maintenance of a national FASD research network such as we've established over the last five years through FASD Research Australia. We strongly support implementation of the FASD action plan—which was published in 2018, I think—provided that any programs implemented are evidence based and are properly evaluated.

We would like to close there, but we would like to have the opportunity to respond to some of the earlier evidence if that is possible.

CHAIR: Yes, I think that is possible. Do you want to do that now or would you rather do it later?

Prof. Elliott : Yes, just very quickly. First of all, I note that the evidence provided by the AIHW was seemingly unaware that there is a government funded national surveillance system for fetal alcohol spectrum disorder and, indeed, a register, and there are 590 cases that we've collected already in the last five-year period. I can give more details about that data later if you wish.

The second thing is that congenital anomaly systems, as Jane Halliday said, are not likely to pick up most cases of FASD. Firstly, over 80 per cent of them don't have physical features. Secondly, the median age of diagnosis is about eight years, so they're not going to be evident. Thirdly, the inpatient databases of hospital separation data will not pick up these cases generally, because most of these kids, unless they've got a severe birth defect, are managed as outpatients. Finally, I think that some of the terminology that has been used in relation to fetal alcohol syndrome is no longer used in Australia, and I would refer you to the Australian guide to the diagnosis of FASD, where we use the terminology of FASD with or without sentinel facial features. Carol may want to make a couple more points.

Prof. Bower : Yes. As to the congenital anomaly data collections that were mentioned by the AIHW submission, there are some states that have congenital anomaly registers that include fetal alcohol spectrum disorder, and Western Australia is one of those. The New South Wales collection, however, specifically excludes fetal alcohol spectrum disorder. So it is important that there be consistent collections of the data, and the FASD register that Elizabeth spoke about is national and could be extended to include sources of ascertainment other than just paediatricians, which is what it's based on at the moment. But those congenital anomaly registers, as she said, are generally up to just the first year of life or sometimes up to six years of age, so they won't capture it, in most cases, because the diagnosis is often not made at least until children start school, when their functional impairments really come to the fore.

I think another question that was asked by the committee was: 'Has there been a decrease in diagnosis of FASD in Australia?' In fact, there's been a huge increase, because previously the condition wasn't being diagnosed but now we've got much improved capacity in order to make the diagnosis, and so what we expect is that there will be an increase in diagnosis of FASD, which, if taken at face value, would look like the rates of FASD are increasing in the country, but it's important to understand why the diagnoses are increasing, not necessarily—although we don't know that—the actual cases.

CHAIR: Thank you. Did you have any further comments?

Prof. Elliott : No.

Prof. Bower : If the committee wishes, we can provide more detail about the types of children we're seeing, but we're open to questions.

CHAIR: If we don't get to it during this session, any additional information you could provide to us would be very helpful. Can you comment on the issue of the number that you've just articulated, 590, versus the evidence we got from the AIHW, in terms of our understanding of the prevalence?

Prof. Elliott : I think, as Carol alluded to previously, paediatricians and others were reluctant to make this diagnosis. They didn't know the criteria. They didn't know what to do if they made the diagnosis. They were worried about stigmatising children. Now that we've got the guide and we've provided a lot of training and education, we're using the Australian Paediatric Surveillance Unit to collect cases. Every month, all paediatricians in the country are sent a report card and they're asked to report to us newly diagnosed cases of fetal alcohol spectrum disorder. As Carol said, the numbers of reports we've got have increased over the last five years, and we've now identified a large number of cases, and I can provide their details to you. But the thing is that paediatricians are the ones most likely to see these cases—often in the context of a multidisciplinary team. They're not likely to be seen and reported to birth defects registers because their primary problems are associated with behaviour and with learning, attention and cognitive difficulties, which really don't become evident until late preschool or early primary school.

Prof. Bower : I just wanted to add to that a couple of things about the Western Australian collection of data on FASD for the Western Australian Register of Developmental Anomalies. We published a paper, and it is referenced in our submission, showing that there had been an increase in cases diagnosed and reported to the WA register, over a 20-year period, in both Aboriginal and non-Aboriginal children. It's a mandatory data collection in Western Australia—a mandatory collection of birth defects and cerebral palsy. We did get permission from the state health department to increase the age at which cases of FASD were notified to the register to 15. For all others, the mandatory notification age is to age six. However, that has lapsed. So that hasn't been instituted yet. The aim was that we would capture better those later diagnoses, and that's actually what the national FASD register is now—those cases, up to 15 years of age, at the moment. But that is not mandatory.

Prof. Elliott : It's not mandatory, but we do have a high participation rate—fortunately, from paediatricians. We do not have any population based prevalence data in the general population in Australia. Several years ago, we conducted the Lililwan Project, which was a population based prevalence study in very remote Aboriginal communities in the Fitzroy Valley of Western Australia, and we found that one in five children, using conservative estimates, had fetal alcohol spectrum disorder. So we know that some Aboriginal communities—but by no means all, because this is a problem across our society—are more vulnerable. We also know from the national surveillance data that 80 per cent of the children that are reported to us by paediatricians live in out-of-home care—not with their biological parents, with extended family care, foster care or adoptive care.

CHAIR: Did you say the majority?

Prof. Elliott : The majority—above 80 per cent. We know that some children in remote Aboriginal communities, some children in out-of-home care and, as Hayley mentioned, children in juvenile justice settings are vulnerable. As has been recognised internationally, these are more vulnerable groups.

CHAIR: This is as reported by paediatricians. Is my understanding correct?

Prof. Elliott : That's correct—paediatricians and other child health specialists, such as GPs, who only have child health practices.

CHAIR: But we can't take it for granted that any child who has FASD symptoms would necessarily see a paediatrician.

Prof. Elliott : We can't ensure that this is a complete data collection; however, it's a very large number of children, and most of these children will have seen a paediatrician. In fact, the vast majority in our study were diagnosed in the six or seven FASD assessment clinics that are operating around the country, all of which have input from paediatricians. You need a paediatrician to do the physical examination, to look for the facial features et cetera, and we also rely heavily on neuropsychologists, physiotherapists, occupational therapists and speech therapists to conduct the extensive assessment that's required to make the diagnosis.

CHAIR: Sorry, what I was going to is that there'll be large sections of our community that don't access paediatricians. For example, you referred to the Fitzroy Valley study, which I'm very familiar with. There's no way that each child that was examined up there prior to the survey would have had access to a paediatrician.

Prof. Elliott : Well, there's access to paediatric services, but what we did was see every child. But you're absolutely correct that there are sections of our population who won't have access to a paediatrician. That's why in our education and training we've tried to target not only paediatricians but also general practitioners, hospital doctors, Aboriginal health workers and all the allied health workers and psychologists, to build capacity across the community to recognise this condition and what is required for its diagnosis.

CHAIR: Thank you. Senator Urquhart, do you want to kick off this time?

Senator URQUHART: I'd be happy to. I want to go to the national FASD action plan. In your submission you recommend a transparent, fair and equitable allocation of funding. Can you talk me through what the issues are in relation to the allocation of funding for each area of the plan, and do you think that the funding of $7.2 million is sufficient to achieve the priority objectives within that plan?

Prof. Elliott : I'll address a couple of those issues. The funding has not necessarily been transparent in that, for example, some clinical services have been funded in response to the original action plan while others have not, so there's an inconsistent funding model across the country. We know that some prevention services have been funded, but again they're not universal, and we haven't had publications coming out of those.

With regard to the second question about the funding allocated for the current action plan, I think $7.2 million is a very low amount of money. If we only have that amount of money, we'll have to be very careful about how that might be spent and what the priorities are. Really, we should be advocating for a significantly larger amount of money.

Senator URQUHART: What would we need the figure to be to achieve those priority objectives?

Prof. Bower : As we alluded to in our submission, each of the priorities needs to be carefully examined and costed—and I don't think they have been—and then the true cost of delivering those outcomes would become clear.

Senator URQUHART: So, we should have funding that fits the model rather than overall funding that gets distributed but not effectively?

Prof. Bower : Some of it was directed to particular areas. There was an amount for prevention, an amount for screening and an amount for diagnosis, but not in any detail within those areas—for example, in prevention, there are a lot of things that the money could be used for. So, I think a better, more concise estimate of the costs would be valuable.

Senator URQUHART: Thank you. There still seems to be a lot of confusion about the levels of alcohol that pregnant women should drink and the risk of FASD. Why are the public awareness campaigns that have been in place for a number of years now not working?

Prof. Elliott : The first thing to say is that there hasn't been a general public awareness campaign in Australia, although we've been advocating for that for many years, provided it is evidence based and well evaluated. I think the message is getting out there slowly, but we do need to think strategically about how we could increase awareness. As has already been said this morning, that requires education across the board, for all age groups and all parts of society. But I think that, on the issue of prevention, one thing we do need to keep at the back of our minds is that awareness and knowledge—and this is substantiated by our research—do not necessarily change behaviour. Simultaneously with any awareness campaigns we need to be advocating for measures that we know will prevent harm from alcohol, including pricing and taxation; access, through reducing opening hours; density of liquor outlets; and restrictions on advertising and promotion. Unless we have that really strong legislative backdrop, it's very difficult to get benefits from awareness campaigns.

Senator URQUHART: In your opening statement, you mentioned that the industry had talked about the costs of labelling as being disastrous. My issue is: what is the cost of safety to society versus that, and what role do you see the alcohol industry having in providing and promoting that community awareness?

Prof. Bower : In relation to your latter point, the labelling of alcohol products has been on the agenda for some time. Originally, when it was first raised, it was agreed that it would be a voluntary system of providing those warnings. That's gone on for several years now—far too many—and the industry has not delivered the goods, really. There have been mixed messages, poor messaging, and more labels and not on every product, which is why it's now reached the point of requiring mandatory labelling. I think it is clear that that's what's required. No-one's saying that putting a mandatory label on alcohol, even a well-researched and known-to-be-effective one, is going to solve the problem of drinking alcohol in pregnancy, but it will form a good part of a suite of programs and measures to raise community awareness that can be built on to change behaviour.

Senator URQUHART: Great. Thank you.

Prof. Elliott : Perhaps I could address the other question very briefly. We haven't done a good economic analysis of the costs here, but we will be able to do that now that we've got detailed information on so many patients that have been reported. However, in Canada there are estimates that the lifetime cost of FASD is $1 million. That is, I think, the health cost, but I can check that for you, because there are all sorts of other costs, such as remedial education, contact with justice, child protection, lost time in employment for parents et cetera. If you'd like, we can provide you some international estimates of costs.

Senator URQUHART: That would be fantastic, thank you. If you could provide that, that would be great.

Prof. Bower : We have developed a proposal in Western Australia to use our extensive record linkage system to look at the actual use of resources. This would be for people with fetal alcohol spectrum disorder. It would link known cases to hospital morbidity, mortality, foster care, child protection, justice, intellectual disability measures and so on, to a school education outcome to actually look at the costs. This hasn't actually been done in other places. The costs have been estimated. This would be an opportunity to have real data on what the costs actually are of cases of fetal alcohol spectrum disorder over a long period of time. We would very much like that to be a funded project; it can't be done without funding.

Senator URQUHART: Yes, that would be very useful. If you could provide any info on notice, I'd appreciate that. Thank you.

Senator GRIFF: Professor Bower, just for clarification: I understand that you were funded until 2020. Was that extended?

Prof. Bower : The centre of research excellence was a five-year-funded project, and this is our final year. Yes, it's a grant; a five-year grant.

Senator GRIFF: Are you seeking to extend that?

Prof. Bower : I'm seeking to retire, but I'd love it to be extended for everybody else.

Senator GRIFF: You have done fantastic work, so obviously it would be great to think that you're actually going to continue with that work, but, still, maybe that's a conversation we'll have outside.

Prof. Bower : There are lots of other people who are completely excellent and who will be continuing, so I know it's in very safe hands.

Senator GRIFF: Great. In your submission, you mentioned that there are lots of resources that have been developed to train and educate health professionals but they've only had very limited uptake. What's your view on what needs to be done to encourage more health professionals to avail themselves of these resources?

Prof. Elliott : Could I answer that question? We did receive a government grant to disseminate and provide training and use of the Australian guide to diagnosis. We've run workshops involving hundreds of health professionals around the country. We've also provided some online education modules, which have been highly accessed. And you would be aware of FASD Hub Australia, a website that's intended for health professionals, researchers, policymakers, parents and people affected by FASD. Again, there have been high levels of use of the FASD Hub. I think that there is certainly a dramatic increase in the level of awareness of the harms of alcohol in pregnancy and of fetal alcohol spectrum disorder, but all of these things require funding and personnel, and we have no funding remaining for that training project.

Prof. Bower : Hayley, would you like to talk about training for justice professionals?

Dr Passmore : Sure. Thank you. I think it's really important to extend the conversation from health professionals to all other frontline staff who are engaging with big populations of children and young people. We know that teachers and educators rarely have access to routine training for FASD, and that's similar in the child protection and justice setting. While it's incredibly important that health professionals have up-to-date and routine training about FASD, we really need to look at that more broadly across the community, too.

Senator GRIFF: You actually state that the current funding models and market mechanisms for autism diagnosis may provide a helpful framework to emulate for FASD and increasing diagnostic availability so that more children can access diagnosis in a timely manner. Can you expand on that?

Prof. Elliott : Perhaps I could take that question. Some of the Medicare item numbers refer specifically to autism and not to other neurodevelopmental disorders, such as fetal alcohol spectrum disorder, and in the process of the Medicare item review, which has been recently headed by Professor Bruce Robinson, that issue has been addressed such that neurodevelopmental disorders, including fetal alcohol spectrum disorder, have been recognised. I hope that answers your question.

Senator GRIFF: The national strategic plan makes reference to research which shows the dose amount and timing of alcohol exposure can result in different fetal outcomes. Language delay seem to be most strongly linked to moderate to heavy drinking in the third trimester, and we know that noticeable facial features of FASD appear in the first trimester. Are there other clear links between the timing of moderate or heavy drinking and high risks of a particular adverse outcome?

Prof. Elliott : We have good animal models, which are very informative. But in human studies, it's a very variable pattern. It depends on the timing of alcohol exposure, the amount of exposure, the mother's underlying genetics and health issues and whether alcohol is consumed throughout the pregnancy or indeed prior to pregnancy. I haven't seen the data that you're referring to, regarding language development. My feeling would be, from my clinical practice—I've now seen hundreds of children with FASD—the presentation is very variable and it would be very difficult to relate specific outcomes to specific amounts or timing of alcohol in humans.

Prof. Bower : Just to add to that, pragmatically the fetal brain develops throughout pregnancy and indeed beyond, and so the risk of harm is present at any time in pregnancy. That underscores the advice of no alcohol during pregnancy.

Senator GRIFF: Thank you.

Senator HUGHES: Thank you for your presentation. I have a couple of questions. One of them is on the comparison that you've made on a number of occasions with regard to autism, looking at the same funding numbers and comparing them with neurological disorders. I'm personally a very big fan of Andrew Whitehouse. Autism is something that we're pretty sure is genetic, with its neurological development; it's certainly not something that's acquired through the behaviour of the mother. I'm very concerned about the comparison between the two of them. We know when we do good early intervention with kids diagnosed with autism what the positive outcomes can be. What are the outcomes for children with what is fundamentally an acquired brain injury who have early diagnosis? What programs can assist them?

Prof. Elliott : Perhaps I could comment. The brain of a young child is very plastic and very amenable to interventions and can re-learn and reform networks. As you allude to, the early diagnosis is absolutely crucial, as it is in autism and any number of other neurodevelopmental disorders. That's why we advocate for (1) recognition that a child is at risk, which requires recognition that the mother did consume alcohol during pregnancy, and (2) awareness of what to look for and what to exclude. We need to—

Senator HUGHES: I'm just concerned—

Prof. Elliott : The full assessment allows early intervention in the specific areas of need, whether that be speech and language attention, cognition, adaptive function, social skills et cetera.

Senator HUGHES: Children with autism come from all sorts of families and all sorts of backgrounds without any sort of intervention from parental behaviour, so when you're talking about at-risk children in those same categories there is risk of causing some friction between the communities. I want to touch on the fact that this isn't acquired brain injury. This is something that's done because of a parent's consumption of alcohol. You mention that we know some communities are particularly vulnerable. What sorts of steps are being made to educate women in those communities? Are there some political sensitivities skirting the issue as opposed to a more direct program being targeted and looking at this sort of 'we need national general guidelines because we don't want to specifically target at-risk communities', as opposed to what we know would probably be more effective, which is getting information into those at-risk communities and the health officials in those communities not giving the information that alcohol consumption is not advisable in pregnancy? I find it extraordinary that health professionals still need guidelines to give that information.

Prof. Elliott : If I could make a point, we try very hard not to shame or blame mothers, because when we understand why the mothers that we see drink alcohol it becomes evident that that's because of social disadvantage, domestic violence et cetera. That's the first issue. The second issue is that—

Senator HUGHES: Sorry, can I jump in again. Reading some of your report, and even the other reports we've heard, there's a lot of mention here that women in higher education and higher socioeconomic groups are actually drinking through pregnancy more consistently. So when we're talking about shaming women, there seems to be quite a broad spectrum of women being brought into this. I mean, I'm agreeing with you: I think it is in lower socioeconomic areas with more-significant challenges, but almost every report we've seen today in this hearing has made mention of higher education and higher socioeconomic women.

Prof. Elliott : That's why we believe that there needs to be education and awareness across the board. Clearly, there are some groups that may have different needs. For example, Aboriginal people who don't speak English and who live in a particular setting may require a different approach to the education, but the message is the same. I'm not sure that that's answered your question. Carol?

Prof. Bower : Liz, I thought you might talk about how the communities in the Fitzroy Valley are the ones who are asking for intervention about alcohol and preventing fetal alcohol spectrum disorders. It's a community driven initiative.

Prof. Elliott : Absolutely, and you will be aware of June Oscar and Emily Carter and their leadership in implementing alcohol restrictions in very remote communities in the Fitzroy Valley. That's had a dramatic impact on the amount of alcohol that's readily available and consumed, but through the Lililwan project there was also a huge amount of community education provided. There is anecdotal evidence that there has been significantly reduced intake of alcohol in pregnancy in those regions. So it can be done. The message is the same, but, clearly, it requires community input and uptake so that it can be successfully implemented.

Senator HUGHES: Do you know how many children are being left with parents after they've been diagnosed with fetal alcohol syndrome? Is there intervention in the families once they've been diagnosed?

Prof. Elliott : We see a whole range of people. As I mentioned, in our Sydney clinic the majority of children are in foster care. Their parents have been deemed unable to care for them, often because of alcohol misuse. But there are many parents who are quite capable of looking after their children, including in Aboriginal communities, where there are extended families. So, you know—

Senator HUGHES: Sorry, people that drank through a pregnancy, creating a situation, we're then saying they're the same sort of people that are capable of managing a child through a very complex neurological program or early intervention program if that's what's required.

Prof. Elliott : I've said that many of the children that we see—the majority of them—have had contact with child protection, so many of them are under the care of the department.

Senator HUGHES: You did say there are others that are more than capable of being left with their family.

Prof. Elliott : There are other women who with support are able to stop using alcohol and hence are capable of looking after their children.

Senator HUGHES: How many of them are multiple pregnancies? For how many of the children that you'd see are there multiple children within the same family diagnosed with FASD?

Prof. Elliott : In our clinic in Sydney we're often aware of several children within a family that we've either diagnosed or I would see as diagnosed with FASD. I think the point we make is that that's why it's important to identify that first child, because there may be opportunities to help that mother and prevent the incidence of further children with FASD.

Senator HUGHES: At the moment if a child is diagnosed with FASD, what sorts of interventions are made to the mother with regard to any future pregnancies she might be considering or that might occur?

Prof. Elliott : I don't work in obstetric care, but we encourage our colleagues to identify these women and refer them to the appropriate specialist services, such as drug and alcohol services. One of the problems is that, particularly in remote and rural settings, there's inadequate funding for those services. There has been a previous inquiry into access to mental health services in rural and remote settings, which identified that point in relation to alcohol use in women and in women in pregnancy.

Senator HUGHES: But if we're looking at costs, as you suggested—I think you said around a million dollars per child with FASD, out of Canadian figures—there's obviously some evidence there that it would be better to intervene with the mother at the first of her children identified with FASD and try to avoid it's happening again.

Prof. Elliott : The ideal would be to identify young women who have a problem with drinking at the primary-care level, before they even think about getting pregnant. The other message that's crucial is that if you're drinking, and often young women are drinking at high levels in our society, then you should be using contraception, because you are at risk of getting pregnant and harming that pregnancy. If you want to get pregnant, conversely, then you should stop drinking alcohol while you're trying to get pregnant and during the pregnancy.

Senator HUGHES: What kind of support do we give at the moment with regard to that in high-risk communities of advocating proactively for the use of contraception prior to them willingly wanting to start a family? Do we do anything around that?

Prof. Elliott : I know that Aboriginal communities are leading the way in advocating the use of long-lasting contraception, but, again, I'm not in primary care and I'm not in obstetric care, so I can't really answer that question.

Senator HUGHES: How well do you think these sorts of groups are all speaking to each other? Whether it's in primary care, in or around the FASD diagnostic process, neurological and early intervention, then, obviously, in identifying any further obstetric care, and then with women who've already had a child diagnosed with FASD, how well do you think all of those groups might be connected and working together to ensure continuity of care?

Prof. Elliott : That of course is one of the things that we, as paediatricians, are advocating, that there be a continuum through general practice, midwifery, obstetric care, neonatal care and general paediatric care. That continuum is absolutely crucial. It will be very variable in every health centre, in every health district and in every state and territory, I imagine, across Australia. I'm afraid I can't tell you exactly. Carol, do you have anything to add to that?

Prof. Bower : No. I think you've got a better handle on that from a clinical perspective. It would be great.

Senator HUGHES: It would require overcoming federal and state—we'd be working there.

Prof. Elliott : Yes. It's a very important issue.

Senator HUGHES: Thank you.

CHAIR: Thank you for your time today; it's very much appreciated. You've given some very comprehensive information and answers. You also took some questions on notice. We set 5 June as the date for the return of answers to questions on notice. Is that an okay date for you?

Prof. Elliott : That would be fine, thank you.

Prof. Bower : Yes, fine thanks.

CHAIR: That is fantastic. Thank you very much. That concludes our hearing for today. Thank you to all our witnesses for the time they've taken to share their expertise with us. It's very much appreciated. I thank our witnesses, and broadcasting, Hansard and our secretariat for their work in pulling this together. We'll adjourn the hearing.

Committee adjourned at 12:20