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Standing Committee on Social Policy and Legal Affairs
28/06/2012
Foetal alcohol spectrum disorder

AYRES, Dr Russell, Branch Manager, Policy and Strategic Coordination Branch, Department of Education, Employment and Workplace Relations

BUTT, Mr David, Deputy Secretary, Department of Health and Ageing

CORVER, Ms Leonie, Acting Branch Manager, Disability and Carers Payment Policy Branch, Disability and Carers Group, Department of Families, Housing, Community Services and Indigenous Affairs

EDWARDS, Ms Caroline, Group Manager, Strategic Priorities and Land Group, Department of Families, Housing, Community Services and Indigenous Affairs

KRESTENSEN, Ms Colleen, Assistant Secretary, Drug Strategy Branch, Department of Health and Ageing

RYAN, Mr Robert, Branch Manager, Remote Priorities Branch, Strategic Priorities and Land Group, Department of Families, Housing, Community Services and Indigenous Affairs

TOWLER, Dr Bernie, Principal Medical Adviser, Department of Health and Ageing

WILSON, Ms Karen, Branch Manager, Disability and Carers Policy, Disability and Carers Group, Department of Families, Housing, Community Services and Indigenous Affairs

Committee met at 08:55

ACTING CHAIR ( Dr Stone ): I declare open this House of Representatives Standing Committee on Social Policy and Legal Affairs inquiry into the incidence and prevention of foetal alcohol spectrum disorder. I acknowledge the Ngunawal and Ngambri people, the traditional custodians of this land, and pay our respects to the elders past, present and future. The committee also acknowledges the present Aboriginal and Torres Srait Islander people who now reside in this area and thanks them for their continuing stewardship of this land. Please note that these meetings are formal proceedings of parliament. Everything that is said should be factual and honest. It can be considered a serious matter to attempt to mislead the committee. This hearing is open to the public and is being broadcast live. A transcript of what is said will be placed on the committee's website.

We usually begin with a short statement. I know that some of you have given us written material. Dr Butt, I believe you have a statement to make.

Mr Butt : Yes. I too would like to start by acknowledging the traditional owners of the land on which we are meeting, their elders and ancestors. I will speak briefly about the interests and investment of our department and then pass over to FaHCSIA for their comments. DoHA notes that while FASD is estimated to be relatively rare, its impact can be enormous on individuals, families and communities. FASD covers a spectrum of conditions and the diversity of ways it manifests in functional, behavioural and health problems presents challenges in diagnosis, management and appropriate support for families.

While it appears throughout the population, evidence of the concentration of FASD in particular populations indicates we need both population level and targeted approaches to prevention and management. DoHA's efforts in relation to FASD have focused on prevention, improving capacity to diagnose and assess FASD, on increasing our knowledge base about FASD and its management. DoHA's involvement in this area has evolved from and been informed by discussions across government through the Intergovernmental Committee on Drugs and by the FASD monograph, which was prepared initially for governments in 2009. The FASD monograph has now been approved for release by the Standing Committee on Health and Ageing. I understand a copy was provided yesterday and we have given you hard copies this morning.

ACTING CHAIR: Is this the updated version or the original?

Mr Butt : No, it is not the updated version. Work on the updated version is still going on and my understanding—and Ms Krestensen may be able to add to this—is that there will be an addendum to the monograph to update the evidence in relation to FASD.

Ms Krestensen : That is correct. The update is still underway. It is really looking at what has changed in the government's actions against some of the issues raised in the monograph and, as Mr Butt said, looking at whether any of the references need updating. We are in the process of considering that at the moment. We need to touch base with the Intergovernmental Committee on Drugs but it is most likely that there will be some sort of supplementary resource which will come out to add to this monograph. The authors acknowledge that a lot of what is in that monograph that we have just made public is very current and they also acknowledge that the monograph itself has greatly influenced activities by a range of governments—not just the Commonwealth—over the last couple of years. The update will really be a summary of what actions have taken place against those areas of the monograph and an update of any of the evidence which has changed since then.

Mr Butt : DoHA has invested approximately $2.5 million since 2009 on specific FASD projects. I stress that that is on specific FASD projects, apart from other expenditure occurring more broadly on alcohol prevention and on treatment and prevention programs. This includes firstly the funding for the FASD monograph; secondly, the development of culturally appropriate resources for Indigenous health workers and communities to raise awareness of FASD and support targeted prevention activities about the risks of consuming alcohol during pregnancy; thirdly, the development of an Australian diagnostic tool promoting early and accurate diagnosis; fourthly, funding to the Australian Institute of Health and Welfare to review available data on FASD in order to gain a better understanding of prevention, prevalence, diagnosis and management of FASD; fifthly, co-funding for the Lililwan project in Fitzroy Crossing; and, finally, funding for the National Organisation for Fetal Alcohol Syndrome and Related Disorders—NOFASARD, as you would know them.

In addition, DoHA's mainstream program activities have contributed to the prevention and management of FASD. This has included promotion of broader messages about safe alcohol consumption and the risks of drinking during pregnancy, primary care services for women during pregnancy, funding for alcohol treatment services under the Non-Government Organisation Treatment Grants Program and the Substance Misuse Service Delivery Grants Fund, and medical and pharmaceutical services for all Australians.

There are a number of challenges and opportunities ahead in relation to FASD. Firstly, research: there are still significant deficits in our knowledge and research base. We still do not know enough about the factors which contribute to FASD, its prevalence or what the most effective models of early intervention are to reduce its secondary impact on mental health, education and social dysfunction. The NHMRC has expressed an intention to undertake targeted research on FASD and has in fact advised that they will shortly be going out for targeted research on FASD with a budget of about $2.5 million. Secondly, a consistent and clear message about the risks of consuming alcohol during pregnancy needs to be conveyed; competing and sometimes conflicting information about levels of safe consumption can be counterproductive and DoHA supports the message in the NHMRC guidelines that indicates it is safest not to drink during pregnancy. Thirdly, DoHA considers that the primary healthcare workforce plays an important role in helping women to make the right lifestyle choices about alcohol consumption during, or when planning, pregnancy and the NHMRC antenatal guidelines and the Pregnancy Lifescripts initiative will both support GPs and other key professionals in this regard. Those Pregnancy Lifescripts guidelines are being updated at the moment and are almost complete. Fourthly, continuing efforts targeting the high level of FASD in Indigenous communities are needed; programs providing health and social services to Indigenous communities and providing support to Indigenous women before and during pregnancy can continue to play an important role in this respect. Finally, a vital component of any future strategy needs to provide responsive and compassionate services to women who are alcohol-dependent and have families or who are pregnant and recognising the broader needs of children at risk in alcohol-affected family environments.

In going forward, opportunities to embed best practice in prevention, assessment and service delivery in existing services and programs will be an important foundation on which to build in order to be more responsive to the needs of women and children and their families. Thank you.

Dr STONE: I am going to hand back to our chair. DEEWR chose not to make an opening statement. We have just had the statement of the Department of Health and Ageing.

Ms Edwards : I would also like to acknowledge the Ngunawal and Ngambri people who are the traditional custodians of the land on which the committee meets this morning and pay our respects to elders past and present. As you would know, FaHCSIA is the Australian government's lead agency on social policy and we work in partnership with other government departments and our non-government agencies like our colleagues at DoHA to manage a diverse range of programs and services designed to support and improve the lives of Australians. Particularly relevant to the committee's work today is our responsibility for disability and for Indigenous affairs, and of particular interest to the inquiry is the support we provide to people with disabilities associated with foetal alcohol spectrum disorder and their families. We are pleased to have the opportunity to provide to the committee an overview of the support available to people with FASD and their carers, our Indigenous specific FASD focused activities and our broader strategies to address alcohol related harm in Indigenous communities.

The Australian government has expressed a strong commitment to supporting Australians with disabilities and their families. In addition to a range of services, facilities and support, the government's commitment to establish a National Disability Insurance Scheme will ensure that people with significant and permanent disability receive the care and support they need over their lifetimes, regardless of where they live or how they acquired their disability.

FaHCSIA is also the lead agency for Indigenous affairs, and FASD is a major issue in the lives of many Aboriginal and Torres Strait Islander people. The limited evidence available suggests that some regional and remote Indigenous communities have a high prevalence of FASD. FaHCSIA's focus is to better integrate efforts at all levels of governments to improve safety and wellbeing and to prevent the harmful impact associated with the excessive consumption of alcohol in Indigenous communities, including in relation to FASD.

We should be clear, however, that neither FaHCSIA nor the government takes the view that FASD is exclusively an Indigenous issue. It clearly has an impact across the broader community. The 2010 National Drug Strategy Household Survey showed that Indigenous people are 1.4 times more likely than non-Indigenous Australians to abstain from drinking alcohol altogether; however, they are also about 1.5 times more likely to drink alcohol at risky levels, for both single occasion and lifetime harm. We have to keep in perspective that this is a whole-of-community issue, but we do not resile from our efforts to particularly focus on Indigenous communities.

FASD is a problem which affects not only the drinkers and their babies but also their families and communities. That is why we have measures that prevent and reduce alcohol problems in the community, and that will have a flow-on effect in relation to FASD. Although the evidence is limited, we expect that, in communities where alcohol use is extremely high, the prevalence of FASD is also extremely high and, similarly, in communities where we can help ensure that alcohol consumption is low or moderate, FASD is prevalent in a low or moderate way. It is simple but an important basis of our work. We know that, in communities that have a community agreement about cutting back on alcohol and have strong leadership on the issue, such as the towns of Fitzroy Crossing and Halls Creek in Western Australia, there is a reduction in consumption and also, we hope, a reduction in the prevalence of FASD.

Through the election commitment to break the cycle of alcohol and drug abuse in Indigenous communities, the Australian government is providing support for a number of selected communities to develop local, community driven solutions to address alcohol related harm. Subject to the needs identified in the particular location, these solutions will be able to include activities targeted at reducing the incidence of FASD. As my colleague has mentioned, FaHCSIA also works closely with the Department of Health and Ageing to support community led efforts through activities aimed at preventing and raising awareness of FASD in Indigenous communities. One example is Marulu, the Ilalwan Project, a community led strategy developed to address FASD in the Fitzroy Valley of Western Australia, which we have been supporting jointly with DoHA.

Dr STONE: We are going there, yes.

Ms Edwards : We look forward to reading the transcript and your findings. The committee would also be aware of the issues in relation to alcohol related harm affecting Aboriginal people and communities in the Northern Territory. Addressing alcohol abuse will be a key priority for FaHCSIA in our work in implementing the measures to tackle alcohol abuse under the Stronger Futures in the Northern Territory initiative.

We know that prevention is the key to addressing FASD but we also know that there is a need to support people who already have FASD and the people who care for them. There are a range of measures available to assist these people. People with FASD who require ongoing self-care, mobility or communication support may be eligible for support from specialist disability services provided by state and territory governments. The Commonwealth contributes funding for these services through the National Disability Agreement. Carers of people with FASD may also be eligible for financial assistance through the carer allowance or carer payment, and some carers may be entitled to receive child disability assistance payment, available to carers of a child with a disability under 16 years who attract the payment of carer allowance for their carer. In conclusion, there is a growing awareness about FASD in the community but it remains a complex issue which needs a concerted and coordinated effort with respect to research, prevention and services. We will continue to provide financial support such as carer payments, carer allowance and the disability support pension in cases where people with FASD have significant functional impairments or high care needs. But given that the issue of FASD affects health, education and other outcomes for the people it affects, including Indigenous people, a coordinated, whole-of-government response is required. For this reason, we will continue to work with DoHA and other Australian government agencies to ensure that the responses to FASD are coordinated across all relevant portfolios.

CHAIR: The current NHMRC guidelines state:

For women who are pregnant or planning a pregnancy, the safest option is not to drink alcohol.

This is a question specifically for DoHA, I guess. The process of updating the guidelines is starting in 2014. If you want to avoid road accidents, not driving is the safest option. Do you want to flag what you might be doing in the future in terms of this recommendation?

Mr Butt : It is an NHMRC guideline. We do not interfere in what is a scientific position taken on the basis of evidence. They will be undertaking literature reviews and looking at that guideline.

CHAIR: Is there any indication of where the scientific data or empirical studies are heading?

Dr Towler : I would have to say that at the moment we really do not have enough data about the impact of alcohol and specifically the combination of alcohol in an individual woman and her pregnancy to move beyond that it is safest not to drink. I understand that that is an absolute kind of message, and it moved on from the NHMRC position in 2001. It is in line with positions taken in other countries, broadly. It would be very difficult to do that kind of research, as you can imagine, because—

CHAIR: It is all post—

Dr Towler : Exactly. We really do not know. Because of that, it is really the safest thing to advise women. On the other hand, we can also say to women that if they have had a drink early on at low doses at the moment we expect that low levels of alcohol are low risk. It seems to be that the evidence is pointing more towards higher consumption and prolonged higher consumption being the greatest risk. But this is not an uncommon thing to do. In the absence of evidence, we take a cautious approach because we really do not want to get it wrong.

Mr VASTA: Chair, you might have been on the plane when we flew back last week. There was an American study that said it was okay for women to drink. Did you see this on the aeroplane? They had a woman who was wearing a cushion and consuming a lot of alcohol in a bar. They were gauging the public reaction to that. I think it was probably a bit of a dangerous thing because the evidence that we have heard is quite to the contrary.

Dr Towler : Or at least there is an absence of evidence. The evidence that we do have points to the fact that at low levels there seems to be low risk. But you have to take into consideration the individual factors of that woman and her pregnancy. In the absence of evidence, we do not really know how it is going to be one on one. So it is really the safest message and it is not uncommon to take that kind of preventative and cautious approach.

CHAIR: I assume it is a sliding scale per drink. Taking into account BMI, metabolism and all those other X factors, it is pretty scientific in terms of more alcohol equals more damage.

Dr Towler : I am not sure whether it is that scientific. We have data that says that higher levels and prolonged drinking is certainly associated with it. Certainly at certain periods in the pregnancy the impact is going to be greater. There are gaps in our knowledge. In that situation, we take a cautious approach.

CHAIR: Such studies are always going to be after the event, one would assume; it is a bit hard to get an ethics committee to sign off on—

Dr Towler : Absolutely.

CHAIR: I hope so, anyway! So it is always going to be hard to get long-term, empirical data across population studies, I assume?

Dr Towler : That is correct, yes.

CHAIR: Okay. It is not going to show up in the DNA of a deceased person or anything like that, is it, because scientifically, to find someone who has FASD, it is a matter of indicators rather than markers; is that right?

Dr Towler : I do not know of any literature that suggests that there is a genetic susceptibility. You may have heard from experts about other literature. But I am not aware of literature to that effect.

CHAIR: No, we have not had any evidence of that.

Dr Towler : It is really related to the consumption of alcohol; it is not about a genetic predisposition or anything like that.

I also want to just make the comment that the NHMRC have very robust processes for pulling together the best available information in which to assemble in a scientific fashion, and to then guide, this sort of information, and they take that role very seriously. They use very robust methods.

CHAIR: Now, the NHMRC advise governments and the Australian population. I seem to recall that, the last time they did that, there were front-page stories slamming them for their preposterous suggestions about alcohol. My memory is a bit fuzzy—

Dr Towler : I remember it well.

CHAIR: You were probably in the middle of that.

Dr Towler : No, I was not myself, but—

CHAIR: The tabloids really went to town on the council's recommendations about the safe consumption of alcohol. I do not think we have become a nation of wowsers since then. Would you like to comment on that difficult process of advising the public of the medicine they should be taking?

Dr Towler : Yes, sure. I think that between 2001 and 2009, when the guidelines were updated, the evidence progressed to a point where—and my recall of that period is that this was the public concern—the guidelines changed what had been considered appropriate levels of consumption for women and men. That was part of the concern. It went from four standard drinks to two standard drinks for men—

CHAIR: And it almost introduced the idea of a standard drink, didn't it? Or was that a few years ago?

Dr Towler : I think that had been around, yes. I do recall that. In addition, the advice about pregnancy had become a little bit more restrictive as well. It is the NHMRC's role to tell the hard truth, if you like. They are the people who pull together the science and deliver the messages, and sometimes those messages are going to be unpalatable. But I absolutely recall that period.

CHAIR: We have seen something similar happen with climate science—but that is a story for another committee.

Dr STONE: Mr Butt, I think in your opening statement you suggested FASD was a rare condition. But we have had other statements that it is not a rare condition, sadly, particularly in Indigenous communities. We had strong representations from the alcohol industry that the evidence is not there, there is no real problem, that labelling was not going to help at all and, in fact, that labelling advertising does not make much difference to behaviour anywhere.

Mr Butt referred to the $2.5 million coming through, and you referred to GPs and others being targeted for this extra $2.5 million. Can you tell us what sorts of public information or awareness programs are being undertaken? Is there any money in that for educating medical and other health professionals, or for public information campaigns, to overcome the alcohol lobby's argument that this is nanny-state stuff?

CHAIR: And I want to just bolt on a question for DEEWR in terms of the education side of that—whether there is a similar process.

Mr Butt : Just to be clear, what I said was that it was relatively rare from a population perspective, to put that into context. I certainly did not intend to make a statement that aligned with the view of the alcohol industry. I will get Ms Krestensen to comment.

Dr STONE: That is our problem. We do not know its incidence in the general population either. To say it is rare is an interesting statement given our knowledge.

Mr Butt : In the documentation you have been provided with it shows what evidence we do have. Again, it points to the point that we need more evidence, more research.

Dr STONE: We cannot claim it to be an overwhelming epidemic or rare at this point given we do not have that data and given there are probably a lot of misdiagnoses with Asperger's, autism or attention deficit disorders and so on.

Mr Butt : Potentially so, yes.

Dr STONE: Please tell us about the information campaign work that you may be funding now.

Ms Krestensen : You mentioned the $2.5 million figure. We have mentioned two $2.5 million figures in our statement. To be clear, we had already committed $2.5 million since 2009. That is underway and is almost fully spent. The NHMRC is indicating that its targeted call for research is expected to allocate a further $2.5 million in advancing our knowledge of FASD, which is clearly a theme of this inquiry. The $2.5 million that we have allocated has been targeted at a range of things, not just at prevention but also advancing the skills of the health professionals, advancing our knowledge of what information is out there through an HW program and funding the monograph itself.

At a prevention level, the sorts of things we have been undertaking have been broader than FASD. Most of the documents, including the monograph around FASD, indicate if you are looking at prevention you have got to attack it at a whole range of different population levels, even at a tertiary level for women who have previously had a child and are alcohol dependent. The sorts of activities we are doing are around promotion of the NHMRC guidelines themselves, including the guideline around not drinking during pregnancy. We distributed something like 778,000 resources last financial year which promoted those guidelines, including that particular guideline.

Dr STONE: How did you do that?

Ms Krestensen : We had two approaches. We promoted the availability of the guidelines. We funded through the National Binge Drinking Strategy quite a lot of community based activity. In 2010 we had the 'Don't Turn the Night Out Into a Nightmare' campaign, which really raised awareness in the community about the harmful impacts of alcohol. All roads lead back to a 1800 number and the availability of these resources through a mailing house which distributed, on request, these resources to the community.

Dr STONE: Were they pamphlets and written materials?

Ms Krestensen : There were pamphlets, written materials and T-shirts. There is a whole range of different materials promoting and getting those key messages out there.

Dr STONE: Are they related to pregnancy or just drinking?

Ms Krestensen : They included the guideline around pregnancy. The broader exercise was about promoting all the NHMRC guidelines and the guideline around not drinking during pregnancy was one of those. We have embedded the guideline around pregnancy into a couple of key activities including the Pregnancy Lifescript Project, which David mentioned briefly, which is a screening tool and a resource for GPs to support women to make healthy lifestyle choices on a range of things including alcohol during pregnancy. We have also embedded the guidelines, including that guideline, at a project level. At the moment we are contracting under the flexible fund for chronic disease prevention and there is a clause in that contract which requires every organisation that receives funding under that particular program to look at ways they can promote the guidelines.

The $2.5 million also included funding for the development of a range of resources targeting Indigenous communities promoting both information to health workers and also to communities themselves. That project is still underway. It has been undertaken by the National Drug Research Institute which has been consulting with and developing a template for those resources with a range of Indigenous communities across Australia. There has been a very broad and long process of consultation on that. Those resources will be available at the end of the year. I could go on but they are the sorts of prevention resources that we have. The $2.5 million in salary has also been spent on projects including—

Dr STONE: Could you perhaps present the committee with examples of the materials that you have been referring to—apparently you have the T-shirt here, but do you have the pamphlets, the CD-ROMs that you mentioned? A lot of this material seems to have a generic focus on all the guidelines. I am trying to get a sense of what specifically is out there and in particular how you evaluate the impact of this—is there any particular monitoring measurement of the impact?

Ms Krestensen : You have made a good point. Those materials were outside the 2.5 million, that is the broad population-level information. One of the key themes has been that you have to look at that broader level. I am happy to get your show bag, which covers all those materials, but I do want to emphasise that those very specific materials I talked about—like the Indigenous materials—are still under development. We will not be able to provide those to you yet because they are still being developed with Indigenous communities. They will not be available until the end of the year, when they will be also a training the trainer program, which has been developed to support Indigenous health workers to take those forward. We can provide you those broader resources, but, again, I caution that most of the projects we have under way are due to be completed this year. The outcomes of those have yet to come to fruition. We had a workshop last week, actually, with Elizabeth Elliot and various others who have been involved in those projects. A key project is of course the development of an Australian diagnostic tool. I am aware that Elizabeth spoke to you about the work she was doing, at the Sydney hearing, which we attended. That is a project that we have funded. The draft report of that is with us at the moment, so that is another project that will come to fruition this year. There will be a series of outputs reports from these projects coming up in the next six months. We had a really good workshop last week, including Dr Taylor, at which we sat down and talked about how all these projects can be linked together. We started the process of discussion about where we might go next. We can certainly pull together for you those broader resources that have been available for some years, with the caution that they are not going to be showing the outcomes of this current wave of investment, which, again, I will emphasise, has been informed by the monograph that you now have in front of you.

Ms SMYTH: My question is a fairly broad one—it is perhaps best for both DoHA and FaHCSIA. It is around some of the evidence that the committee has taken during the course of its inquiry into the suspected intergenerational impacts of FASD. Separate from the direct targeting of women who are pregnant, parents who are expecting a child and who are likely to be consuming alcohol, are there particular policy responses or is there particular thinking around the intergenerational impact in the way that parents and grandparents who are suspected of having FASD are targeted by government policies to try to address that intergenerational issue?

Ms Krestensen : I would start off by saying that one of the things we are most concerned about or worried about is that one of the biggest predictors of having a child with FASD is having a previous child with FASD and being alcohol dependent in that situation. It would be irresponsible of us not to think about ways that we could do more in that area without, on the other hand, stigmatising women. It is really tricky balance. We are talking to our colleagues in the treatment services area of the department about how we can really build this into quality frameworks and frameworks for delivery of services in this area. It is a dialogue we are having also with our colleagues through the Intergovernmental Committee on Drugs. You have raised a sensitive but important point which came up last week. Bernie, I do not know if you want to add to that, given that you are there for that discussion.

Ms SMYTH: I will sneak in with one thing before you do. Last week, when we met with some of the representatives of the Royal Women's Hospital and its WADS unit, there was mention of a particular form that I gather is used across the state— and, clearly, it is a state issue. There is a section in that form that talks about the individual's alcohol consumption and drug use and there is a section that talks about family history of depression, heart disease and other issues but it does not look at alcoholism in the family history and it does not specifically prompts a person to think about that. I would have thought that was an obvious area that might be drawn out in initial inquiries—by midwives and doctors, for instance.

Dr Towler : We have identified that as, I guess, a related issue, so I will come back to it, in terms of being able to collect data about alcohol consumption. I guess you are talking about broadening that to the impact of it being through the generations. To my knowledge we do not particularly focus on that at the moment, but it is actually an issue—I get what you are saying. Our efforts are really around looking at how we can collect better data through, for example, the midwives data collection on alcohol consumption and getting a standardised approach to that. I imagine you have had submissions talking about the difficulties people have encountered. Some states do it, some states do not. There is a lot of concern about the appropriate and standardised way to do that. As to how you would collect that information more broadly across generations, nobody is really looking at that particular issue at the moment. But we get that the data collection is a really important part. The other side of that then is collecting data in a standard way on children who are affected—for example, through the birth defects registers that states and territories have. There is really a lot of room for improvement in terms of how we monitor the alcohol side and then the impact side.

Ms Edwards : Obviously our FASD work does not particularly go to the medical issues that alcoholics have. In terms of alcohol abuse, particularly in Indigenous communities, we are acutely aware of the intergenerational effects that that abuse can regardless of the medical outcomes for children. Children who live in a house where people are drinking far too much who do not go to school in the morning and who often are not fed properly suffer. Neglect is very strongly associated with alcohol and other drug abuse. Our work to reduce alcohol consumption generally is very much focused on the people who are the drinkers but also their families and the impact that they have. Children who grow up in very chaotic households as a result of alcohol and substance abuse tend to be less good parents themselves and need much more support. Intergenerational impact is very much at the centre of what we are doing in addition to the medical information.

With respect to the discussion before about education campaigns, FaHCSIA has a new project which is too new to have made it into our submission. It is a new project where FaHCSIA has funded CatholicCare for an education and awareness program in Darwin, Palmerston, Tiwi Islands and Victoria, Daly and Belyuen regions with an aim to reduce and prevent harm to Indigenous women, with a focus on these sorts of issues.

ACTING CHAIR: Pregnancy and alcohol.

Ms Edwards : Yes, increased awareness of FASD and its impacts, and reduced alcohol consumption. There are FASD publications, which I am sure we are working with our colleagues on, and some additional things. That project has only just started but it is worth drawing to your attention.

ACTING CHAIR: How much was that funded for?

Ms Edwards : $192,508, GST inclusive.

Dr Ayres : I think education is an important factor in terms of the intergenerational issue. I am conscious that the chair asked a question about education generally linked to the issue of information for medical practitioners and so on. In terms of the way we construct the policy and programs in both early childhood and school education in my department, we do not have a specific focus on FASD, partly because of the limitations on the evidence that we have already heard about. We have a similar approach in a policy sense to what has been outlined by FaHCSIA. It is important to emphasise the roll of education to break intergenerational trends and a whole range of negative social behaviours and outcomes, including alcohol and its impact. There is a range of programs and support for parents, children and students in various circumstances—disability support, for example, inclusion support in early childhood and so on. Whilst we do not have a specific targeted set of programs around FASD, children and families that are affected by it certainly would be supported through those sorts of programs. That is certainly the intention.

It is also true to say that we have similarly taken a cautious approach around data collections because of the risk of stigmatisation. We must not make assumptions about the nature of FASD in the circumstances that Dr Towler has outlined, where the research and evidence base is still building, because we are conscious of the risk of stigmatising individuals and communities through data collection. So it is always a balancing act.

On the education element, too, I would point to the fact that there is major work around developing a national curriculum. The component of the national curriculum that this would be addressing, I believe, is on the program for ACARA, the Australian Curriculum and Reporting Agency, in the next 12 or 18 months. This will be in the health element of the national curriculum. So in a broad umbrella sense, at a national curriculum level, that is where a lot of the national approach will be built around issues like responsible use of alcohol. Broadly speaking, education has a role in responding to all sorts of needs, disabilities and disadvantages and helping children and families, including those affected by FASD, to overcome and deal effectively in an educational sense with those disadvantages. But we do not have an FASD specific focus.

ACTING CHAIR: Can I ask you to provide the committee with a catalogue or a list, if you like, of those programs you just discussed? I presume that when you were talking about the national curriculum you were talking about introducing some human development type material or courses into schools to target the responsible use of alcohol—

Dr Ayres : Certainly in terms of a consistent curriculum.

Dr STONE: and relate it to pregnancy as well.

Dr Ayres : Yes.

ACTING CHAIR: What we are finding is that a lot of material talks about 'Don't drink, don't drive—blah, blah, blah' but misses pregnancy. It is like, 'Don't mention the war!' I was interested in the number of times you mentioned stigma. I guess that has also been an excuse for many programs not to mention 'the P word' in relation to alcohol. I think if I were a FASD affected child I would prefer mum to be stigmatised by the suggestion 'Don't drink and drive' than for her to have had a child born with brain damage. I just mention that in passing. It is interesting there is an issue of stigma in suggesting a woman might need help because she is alcoholic. It is an interesting dichotomy, isn't it?

Dr Ayres : Yes, it is.

ACTING CHAIR: We might stigmatise a woman by asking if she is drinking versus, 'We could have helped her stop drinking and saved the child.'

Dr Ayres : It also an issue, for example, if we are collecting data from teachers or early childhood carers. They are not qualified to make a diagnosis anyway, so we need to be careful about asking them to effectively make a diagnosis when they are not qualified to.

ACTING CHAIR: No, I don't think we are suggesting that. I could also make the point that we took evidence recently where someone suggested that, if your income level was over a certain number of dollars, your child was diagnosed with autism; if your income was under that level, your child had foetal alcohol syndrome. That is a sad reflection.

Mr VASTA: The committee heard last week that genetically a person will not be able to pass down FASD if they are affected by it, which is probably pretty good. But Dr Stone and I were also talking about the death in custody recently and whether or not that person might have suffered from FASD. Is there any data collection within the prisons or in any other type of departmental arrangements that could pick up these individuals who might be affected by FASD?

Ms Krestensen : We are not able to speak on what data collection there is in prisons, but I suspect there is none, because there is no national collection which can reliably indicate the number of people with FASD, as I am sure you have heard in your hearings. That relates to the lack of a clear diagnosis tool. The AIHW did some scoping for us on data and found that current perinatal data collections are not really rigorously and routinely collecting information on this for those reasons. So, I suspect, in terms of your question, there is a lack of subset information within particular systems.

Dr Towler : There would be capacity to collect it, but it is the opportunities to make contact with those people and the difficulties of the diagnosis being appropriately made, and they are issues where we are still in infancy in a lot of ways. I know you have heard that information and it is one of the things we targeted as a priority. We have actually got to get a handle on this in terms of being able to diagnose it, so we have put some money and effort into that and have nearly completed that project. But there is no doubt that these people are overrepresented, anecdotally, in prisons; I am sure you have heard that in your submissions.

Mr VASTA: We have also heard that sometimes there are physical defects but that depends on which part of the term of pregnancy the heavy drinking might have occurred as well. So that is a very hard syndrome to get a handle on. We appreciate all the work you are doing.

ACTING CHAIR: We have talked about the carers being given support—FaHCSIA. You referred to programs with the carers allowance being supplied and so on. Could you give us any data about how many carers allowances are paid because of a FASD situation? Do you have that sort of data?

Ms Corver : The number of people with FASD or their carers who are in receipt of income support cannot be determined, because there is no specific code in the payment system for foetal alcohol syndrome.

ACTING CHAIR: Are you going to look at changing that?

Ms Corver : When there is a specific diagnostic tool, when there is a robust diagnosis, I think that would be an opportunity to look at that. We would be looking at changing the system at that point. But at this point cases are more likely to be coded under other more general categories, depending on what the person's particular disability is. It might be coded under a learning disability or congenital malformations, deformations et cetera, which you will not be able to identify specifically as foetal alcohol syndrome related. There is also likely to be some cross-over in the codes for 'alcohol dependence' and 'brain injury, alcohol related'.

ACTING CHAIR: That is in the code? You have a code for alcohol related injury?

Ms Corver : For 'brain injury, toxic, alcohol'. But whether people are using that just for the alcohol dependent person or for a child with foetal alcohol syndrome effects is not clear.

Mr VASTA: This has direct relevance with the NDIS.

ACTING CHAIR: That is right.

Ms Corver : The other thing is that often particular conditions, such as intellectual disability or behavioural difficulty, are diagnosed well before a link to FASD is established and confirmed.

ACTING CHAIR: We have taken a lot of evidence about the problems associated with labelling the condition so that people can more readily access support. We took evidence about the fact that it is not so much an intellectual handicap as a cognitive problem and it depends on IQ scales, for example. Many people with FASD have more than 70 as an IQ marker but have a cognitive problem, in terms of assimilating information and being able to learn, and other problems associated with behaviour and so on.

Can we ask you—it is probably FaHCSIA's area in particular—how are we progressing in terms of the new tables, the new diagnoses, the new labelling, if you like, of the condition? We took a lot of evidence from the foster parents about this. How are we progressing so that they can then work, in their schools or preschools, with a diagnosis and with recognition of that problem; so they can get some initial support, perhaps access teacher aids, physiotherapy or speech therapy?

Ms Edwards : Probably the questions about the diagnosis are with the health department, and the services we provide to people would come to us.

ACTING CHAIR: Okay. We will start with health and ageing.

Dr Towler : Sorry, just in terms of the diagnosis, you are asking—?

ACTING CHAIR: At the moment, as I understand it, we are moving away from labelling the condition to understanding the actual characteristics of a person's support needs. How does a person suffering from foetal alcohol spectrum disorder fit into that? The evidence we have taken is that it is extremely difficult, given a person does not have a diagnosis and they do not have, if you like, a label in the system and that FASD is not listed amongst the various codes and so on. How can we break through that and have this condition officially understood and listed so some support is then triggered?

Dr Towler : I guess in some ways we are moving in the other direction in terms of health. But from a disability point of view, it makes sense to break up what is FASD into the ways in which a person is actually affected. Again, as you know, it is a constellation of disorders, from very severe to much less severe. So, again, we have put a focus on trying to get an accurate way of diagnosing this as accurately as possible, looking at the international literature, pulling together an expert group—Australia's experts—to do that work for us. This project is almost complete; we have drafts of it. It is that close.

ACTING CHAIR: It is a diagnostic tool?

Dr Towler : It is a diagnostic tool. So, in a sense, if you like, that is going to result in labels from foetal alcohol syndrome through to partial foetal alcohol syndrome through to the less severe end of the spectrum, which is neurodevelopmental disorder alcohol exposed. In a sense, in the health arena it is helpful to be able to know what you are talking about but within that there can be a range of different types of disability and health impacts which will suggest different types of approaches, from medication to other types of support across health and disability services.

Dr STONE: A number of witnesses—typically, the foster carers and some of the actual birth parents—have stressed that this is one of the biggest issues for them. They are saying they cannot break into the cycle of support because they do not have officially recognised diagnoses and labels.

Dr Towler : I guess in some sense in health as well because, whilst a lot of this is about service provision after you have made the diagnosis, there is not agreement in terms of what that constellation of services should be at a state and territory level. At the moment within the health arena there are community paediatricians or paediatricians with a special interest and special expertise. It is very multidisciplinary so, even to make the diagnosis, you are going to need your occupational therapists, psychologists and speech therapists. That is what our advice is. To use the tool we are developing you will need a multidisciplinary approach to make the diagnosis and then it is a multidisciplinary approach in terms of the management of those children within that. One FAS child will be different from the next in the way in which they have been most affected in terms of the services or the medications they will need and that is just in health.

CHAIR: Can I be devil's advocate for one moment. Dr Stone is very passionate about this topic. I am a bit loath to be devil's advocate because, in the same-sex marriage inquiry, Family Voice wrote me up under the heading 'devil's advocate'. I think they meant it literally. If we do move down the road to this being a disability and we have a diagnostic tool, will it not just be an opportunity for every mother with a kid who has a slight learning problem or every parent who finds it hard to control their children to say: 'It was that glass of chardonnay I had in week 3 of my pregnancy' or something like that? Would you like to respond to that?

Dr Towler : I will not take on questions about the disability aspects of that; I might leave that to my colleagues. But certainly we should be careful when we make these diagnoses.

Dr STONE: It is often mentioned in the corrections [inaudible] so that will be another excuse for limited responsibility for your actions if you have a diagnosis of FASD.

Dr Towler : But I think you are quite right: there does need to be caution about making the diagnosis.

CHAIR: Across the spectrum.

Dr Towler : Across the spectrum.

Ms Edwards : I might ask my colleagues to comment on the fact that our programs are based on the manifestation of the issues that the person or the child has rather than on any diagnosis.

CHAIR: That does not necessarily mean GP-physician ticking boxes before they get under your umbrella?

Ms Edwards : My colleagues can comment. The availability of the services and the allowances are dependent on what it is that the person actually demonstrates in terms of behaviour or disability and so on as opposed to any particular diagnosis.

Dr STONE: Are you confident that that list of—we will call them—characteristics includes the sorts of problems that cognitive disabilities and so on that a FASD person experiences?

Ms Corver : I can talk about qualification for payments such as carer payment and carer allowance and, indeed, for disability support pension as well. In terms of assistance for carers, carer payment and carer allowance, qualification is based on the amount of care the child receives or, in the case of an adult, the functional needs of the adult.

Dr STONE: That involves feeding, bathing and that sort of thing?

Ms Corver : A whole range of things. There is a list of recognised disabilities which applies only to carer allowance and only to children within the carer allowance category. The list of recognised disabilities—and it is available on the FaHCSIA website—contains certain disabilities and medical conditions that are considered to be constantly severe enough to qualify the parent or the carer for carer allowance automatically, and that includes things such as cystic fibrosis, Down syndrome, diabetes and so on. So where a child's condition is identified on that list of recognised disabilities, as I have said, their carer may be granted carer allowance immediately. Alternatively, carers may be granted under what we call the disability care load assessment, and I will talk about that in a minute. Foetal alcohol spectrum disorder, like a number of other conditions, is not on that list. As we have heard, there is quite a range of conditions. Some people might be severely affected. Others would be only mildly affected.

Dr STONE: It is similar to Down syndrome.

Ms Corver : It is similar to Down syndrome. It is similar to things like autism spectrum disorders and acquired brain injury, where people may be affected severely or quite mildly. It varies from person to person.

CHAIR: And from time to time.

Ms Corver : And from time to time.

CHAIR: It could be improving or deteriorating—I mean for some of those conditions.

Ms Corver : Yes. So while foetal alcohol spectrum disorder is not on that list of conditions, people can still test their eligibility for carer allowance under the disability care load assessment, which is something that measures the level of care required by the child and the level of care provided by the carer—or, in the case of carer allowance adult, using the adult disability assessment tool which measures the functional ability of the care receiver. So the carers of people with foetal alcohol spectrum disorder who are severely affected would qualify.

CHAIR: The people being cared for now.

Ms Corver : If they are being cared for now the level of care would be sufficient to qualify the person for carer allowance.

CHAIR: Is that process which assesses the person to be cared for done by a social worker, a clerk, a medical professional or some other form of person?

Ms Corver : It would be based on a doctor's report on the level of care that the person requires. There is a claim form, and the person would record the level of care that they are providing for that person, and it would be supported by medical evidence. So it would be a report from a doctor supporting the level of care for the condition that the person has.

CHAIR: So the medical evidence is from the doctor treating. So there is a diagnosis.

Ms Corver : Which can be an intellectual disability or something else.

CHAIR: Is there a set medical tool that you would utilise? Do they have to be a GP? Can it be done in a remote community where there is only a nurse? Do you know the assessment tool?

Ms Corver : I do not know the assessment tool in detail. I can come back to the committee with that.

Ms Edwards : I think they might be processes that the Department of Human Services manage. They would, as is usual, have a variety of methods of doing it. I would be confident of that. We could go to DHS and come back to you on that.

CHAIR: And numbers, if they are there?

Ms Edwards : The number of children?

CHAIR: Yes, if they are there.

Ms Corver : We do not have data on the numbers of people who have foetal alcohol spectrum disorder, because it is not—

CHAIR: It could be anything. It could be an acquired brain injury or it could be—

Ms Corver : Correct.

Ms Edwards : We would have figures on the number of children whose carers or parents receiving the—we are talking here about the child—

CHAIR: That is okay. That would be distorted.

Ms Corver : It would be Carer Allowance, more broadly.

CHAIR: Yes.

Dr STONE: You have intellectual disability on that list. In fact it is a very long-standing—

Ms Corver : I have the list here.

Dr STONE: I understand cognitive disability is not on there. We have taken evidence that the problem with the victims is that there is cognitive incapacity and not necessarily intellectual incapacity.

Ms Corver : Again, the way that manifests will vary from person to person. Some people may be severely affected—

Dr STONE: It is not even on your list as one of the criteria that might give access to carer support.

Ms Corver : It is not on the list that would allow carers to qualify automatically—that is, the list where conditions are constantly severe enough to qualify a person automatically. However, people may qualify under the disability care load assessment tool if the effect of the cognitive disorder is such that they require a significant level of care. So, they would not be ruled out. They would still qualify under that other mechanism.

Mr VASTA: They would be slotted in—

Dr STONE: The actual reference to cognitive does not appear in your lists either as automatic or as other conditions that might be considered.

Ms Corver : It does not appear in the list of conditions that might be considered automatically, because—

Dr STONE: I understand that, but does it appear in any list where these might be other conditions that would make you eligible?

Ms Corver : That would depend on the care load the carer is required to provide for the person. That might include a whole range of conditions, which may be cognitive, depending on the care load.

Dr STONE: Behavioural?

Ms Corver : Yes.

Mr VASTA: Taking it to another level, because we are looking at NDIS. If you are starting to get a label or a diagnostic tool where you can identify that, there might be the possibility that there is a lot more responsibility on the parent. If this child is recognised then the stigma against the parent could be quite significant. We are then starting to talk about funding and if that funding might then be cut, because we may not be able to fund, say, FASD, because the parent obviously did something wrong during the pregnancy and they are going to be punished for it. I am just taking this down to a different level to where it might end up in the future. This is where it gets a bit sticky. Do you understand this?

Ms Krestensen : I think I do. One of the issues we are considering in terms of our next steps is that in any health initiative you do not screen or diagnose unless you are clear and can provide information to practitioners and families about where to next once you have a diagnosis. What is the appropriate intervention for that? That is why we are trying to advance our knowledge collectively across government about the best form of intervention—both early and later—and how to link services to best meet the needs of these kids.

I do not think any of us would suggest that, in going forth to promote diagnoses and appropriate assessment of these children, there would be any suggestion we would want to reduce access to services for them. I think we do need to look at opportunities for where within existing service systems and programs we can best meet the needs of these children without setting up new expensive siloed service systems. But the whole intent of getting better at diagnosis and assessment is with a view to linking that to the appropriate early intervention, to address the early trajectory of the condition, to minimise the secondary impact and also to link parents to the best services to support them.

Mr Butt : Looking at tobacco as another example. Obviously we have had quite a comprehensive approach over 40 years in relation to tobacco, but people are still dying from tobacco. It is not as if we refuse them treatment, or anything like that, because they have done the wrong thing by smoking. Yes, we might have provisions on them in relation to services. They need to quit smoking if they are going to get a lung transplant or something like that. But, generally, we do not refuse people access to care simply because they have made a mistake.

CHAIR: To clarify, is there anything similar with tobacco—a 'tobacco spectrum disorder'?

Dr Towler : We know that the effects of tobacco and smoking during pregnancy are harmful. There is vast literature on the impact on mums—

CHAIR: I am wondering what the manifestation of that is? Is it all sorts of things: low birth rate—

Dr Towler : Yes, there are lots of things.

CHAIR: So it is not dissimilar.

Dr Towler : There is increased risk of prematurity, low birth weight et cetera. It is a long list.

CHAIR: Does anyone know—and it is probably a question for the Attorney-General's office—if there have been cases where children have sued their parents for placental harm? I seem to recall a US case along these lines.

Dr Towler : With alcohol consumption?

CHAIR: Yes.

Ms Edwards : We would have to refer that to someone—

CHAIR: Okay.

Ms Edwards : You mentioned NDIS, which is obviously still in development, and there is not much we can say about it. But it is absolutely clear that it is designed to help people with significant and permanent disability, however they acquired that disability. So, it does goes partly to your question.

Also, in relation to the list of disabilities, we might provide that to you—as well as referring to the web site—just so there is absolute clarity on what is and is not on it.

CHAIR: Okay.

Dr STONE: In the states there is also a lot of diagnoses or lists in terms of access to educational support and so on, aren't there. It is federal-state—

Ms Edwards : We would not have access to those.

Ms Wilson : Most of the specialist disability services are provided by the states and territories, and some states, for example, WA, are actually doing quite a lot of proactive work in trying to develop their workforce, and things like that. I thought I would also mention that the UN Convention on the Rights of Persons with Disabilities talks about disability as being an evolving concept. They certainly talk about people with disability as including those who have long-term physical, mental, intellectual or sensory impairments, which interact with various barriers that may hinder their effective participation. I note, though, that it does not include cognitive. But I think our understanding of cognitive conditions, and the impact, is still evolving. With more research over time we will get a better handle on what impairments they might present with.

CHAIR: I have a question that I assume is for DoHA. When does the two-year period finish for the alcohol industry to introduce appropriate alcohol warning labels on a voluntary basis? Do you have a date?

Mr Butt : I would have to come back to you on that. The decision was made in December last year.

Ms Krestensen : It was December 2011, so it would be 2013. That would be two years after the decision was made, if that was your question.

CHAIR: Yes. That was their decision.

Mr Butt : It was the decision of the forum on food regulation. It was a ministerial group.

Ms Krestensen : The decision was to allow two years for the institute to adopt voluntary initiatives before regulations were changed. That was the decision made by—

CHAIR: So, Christmas next year.

Ms Krestensen : Would mark two years. Any interpretation of that decision is really up to that particular body.

Dr STONE: We now have the details of the foetal alcohol spectrum disorders in Australia—it says 'final draft' but it is not; it is the update version that will be available. Why has it taken three years for that to surface? Were you concerned about it?

Ms Krestensen : There is good news and bad news about that. The good news is that it has not just sat on a shelf waiting for someone to approve it over that period. It has been considered by an awful lot of bureaucrats over various departments and various levels of government over that period of time. The authors say that over that period of time this document has actually informed activity not just by us but also by other states in terms of their preventive and broader activities. It has only just been approved for release by the standing council on health, which is why we are only just now able to make it available to you. But it has been considered by three different levels of committees. Whilst that does look particularly bureaucratic, it means that it has been read, considered and has genuinely influenced actions by governments over that period of time.

Dr STONE: I am concerned that it has not outed the issue—it has not been able to be accessed by the public over the three years from the time it was completed, according to the authors.

Ms Krestensen : I understand that concern, but the issues in it have certainly been subject to lively debate. There are a broad range of authors in the document, as you will see. They all have copies of it, so whilst it has not been public it has not on the other hand been secret. It has been generating a lot of debate within the sector over that period of time.

Dr STONE: Do any of you attend the biennial Canadian FASD conference, which is typically regarded as the place where FAS and FASD are internationally discussed. It is probably regarded as—

CHAIR: I think it was on when we were in Sydney for the marriage inquiry. When we had the FASD inquiry in Sydney I remember that the Western Australian minister was on the way to that inquiry.

Dr STONE: She was.

CHAIR: She stopped in Sydney on the way to it, whenever it was.

Dr STONE: Is there any federal engagement with the conference in Canada?

Ms Krestensen : Not from DoHA.

Dr Towler : We are certainly aware of what has happened in Canada, in terms of their initiatives.

Dr STONE: I am just keen that we do not reinvent wheels. Canada is probably regarded as best practice, and the US is fairly close behind. It does surprise me that sometimes we talk about our standalone Australian diagnostic tool, but why didn't we take one off the shelf?

Dr Towler : It has been comprehensively informed by what they are doing in Canada.

CHAIR: It is one area where we are happy for the Canadians to be ahead of us.

Dr STONE: Absolutely, we should not reinvent wheels and waste precious dollars. One of the recommendations of people like Professor Elliott is multidisciplinary diagnostic clinics, ideally one in each state. Westmead is about to have one of the first of those clinics funded. Do you have a view about where we might be going with those. With the diagnostic tool almost completed is there any government discussion about funding a multidisciplinary diagnostic clinic in the Northern Territory or Western Australia, in the first instance, but then in other states?

Ms Krestensen : I will start with the answer to that and then pass to Dr Towler. In discussions with Elizabeth Elliott I think the issue is really about multidisciplinary diagnosis as opposed to clinics themselves. It is that whole issue about making sure we achieve the end without necessarily setting up new service systems. We will be talking to our state and territory colleagues about this issue, but that is the end we want to achieve. It might not be feasible or sustainable to fund a whole new service system, but we will be considering ways we can address the need to draw on a range of players and achieve the diagnosis against the tool she has developed.

Dr Towler : The reading I have done and the discussions we have had with Elizabeth and people like her, who are Australia's experts in the clinical realm, have been very strong on there being a multidisciplinary approach to both diagnosis and management. Elizabeth and her colleagues have also fed back to us that at the moment those clinics vary enormously from state to state. When I say clinics, I mean the clinical services that are provided. They vary enormously. We do have forums where we could consider these kinds of issues. It is essentially an issue about service delivery at a state and territory level, so there is always the issue of what role would be appropriate in terms of—

Dr STONE: So it could be a COAG process to discuss—

Dr Towler : Potentially. There are other forums as well, though, that Ms Krestensen is engaged in on behalf of the Commonwealth that could potentially consider this kind of approach. It really is about service delivery at a state and territory level. It is not something that the Commonwealth really has responsibility for.

CHAIR: Thank you for your evidence today. Before closing the public hearing I ask a member to move that the committee authorises the publication of the evidence given before it at the public hearing today, including publication on the parliamentary electronic database of the proof transcript.

Mr VASTA: So moved.

CHAIR: There being no objection it is so resolved. I declare this hearing closed.

Committee adjourned at 10 : 09