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Standing Committee on Social Policy and Legal Affairs
22/06/2012
Foetal alcohol spectrum disorder

MIERS, Ms Sue, Chair, National Organisation for Foetal Alcohol Syndrome and Related Disorders

RUSSELL, Mrs Vicki, National Project Coordinator, National Organisation for Foetal Alcohol Syndrome and Related Disorders

CHAIR: I welcome representatives from the National Organisation for Foetal Alcohol Syndrome and Related Disorders, also known as NOFASARD. I invite either of you to make an introductory statement before we proceed to questions.

Ms Miers : I would like to make an introductory statement. It should not take too long.

CHAIR: I am sorry—just before you do, I just want to clarify that these meetings are formal proceedings of parliament and that everything said should be factual and honest, and it would be considered a serious matter to attempt to mislead the committee. Obviously, these are proceedings of parliament so parliamentary privilege does exist here.

Ms Miers : Thanks. I would first like to acknowledge that we are meeting on Aboriginal land and to pay my deepest respect to the peoples of the Kulin nations and their elders past and present who are the traditional custodians of the Melbourne area. I would also like to express my very deep concern at the magnitude of our failure as a nation to appropriately provide for the health needs of our first Australians.

NOFASARD of course really appreciates the invitation to address this hearing and sincerely thanks the committee, through the chair, for recognising the importance of FASD and taking leadership in setting up this inquiry.

CHAIR: On that point, could I particularly mention Dr Stone, who unfortunately was scheduled to be here but could not be here at the last minute; this is very much her initiative.

Ms Miers : Yes, we are aware of that and really appreciate it. It is very heartening for us that this is happening. I will add to our submission by providing just a little more background on NOFASARD and on my particular interest in this area, and then both Vicki and I are happy to answer any questions.

NOFASARD is now in its 13th year. It was founded in Adelaide in 1999 when a small group of foster parents and a couple of community service providers got together because of a shared concern about difficulties we were experiencing in parenting our children, who, we all knew, had been alcohol-exposed before birth. Although many of us could only suspect that foetal exposure to alcohol was the cause of our children's behavioural and learning problems, what we did know was that our normal parenting techniques were not working and we needed answers.

In that same year I had the opportunity to attend a Canadian conference on FASD, and I would have to say that it was a really life-changing experience for me. This is when I fully comprehended the human and economic impact of FASD. Not only did I discover that foetal exposure to alcohol has a profound impact on child development and behaviour, but I also began to grasp its links with failed education outcomes, crime statistics and recidivism, inappropriate sexual behaviour, unemployment, substance abuse and inability to parent successfully. And, more importantly, in many cases it appears there is an intergenerational issue as well.

The trip to Canada led to my foster daughter's diagnosis of partial foetal alcohol syndrome by one of the leading experts in the area, Dr Chudley. Dr Chudley's diagnosis left me with really mixed feelings. I was, of course, relieved to learn that my daughter's developmental and behavioural problems were most likely based in organic brain damage rather than being intentional or the result of my poor parenting, which I was beginning to feel at that stage. I also felt a great sadness as I realised the frustration she must have experienced during a lifetime of failure, being told to do better when in reality she was unable to do so. She was being the best she could be, despite school reports to the contrary. I realised my expectations of her would have to change dramatically, and I realised what a difference it could have made to her life if I had had that knowledge during her formative years. I grieved for her lost potential and opportunity, and wondered why I had had to travel to Canada to get information and support that should have been available in Australia. The effects of alcohol in pregnancy were surely as important an issue as thalidomide, nicotine and illicit drug use, and I wondered why it was not being addressed at any level by our health authorities.

I returned home with a strong determination to bring my newly discovered information to the attention of the individuals and agencies who I thought should be taking responsibility for the prevention and management of FASD and, without any of the qualifications usually considered necessary for such a document, I wrote a large report about the conference to illustrate the wide discrepancy between Canada's and Australia's professional awareness of the issues. I disseminated this report widely and naively expected that the relevant authorities and government agencies would take immediate responsibility and implement policies and strategies and allocate the necessary funds to deal with this unrecognised public health issue. Of course, that did not happen, although I did receive a handful of replies and those mostly either dismissed the issue as not being really important or, alternatively, agreed it was an issue and then handballed the responsibility back to me by suggesting further actions I might take.

Since then, our very small committee has worked very hard to raise public and professional awareness. We have been staggered at the barriers we have had, and still do have, to encounter, but gradually along the way we have managed to garner some strong supporters who have helped us move the agenda forward and have given us the encouragement to keep going when it has looked like the effort has not been worthwhile. Nonetheless, FASD is still glaringly absent in policy in most areas where it should be receiving attention. Unfortunately in Australia most affected children are not diagnosed and are in our mainstream settings. They may have IQs in the normal range but their social, emotional and independent living skills are often way below their academic levels. When professionals do not have the specific training or knowledge to perceive and understand the cognitive deficits of these children, expectations are set unrealistically high and so they are set up for failure and often get punished for the symptoms of their disability.

Working with foetal alcohol affected children, adolescents and adults requires a reframing of perceptions and a new way of thinking about the meaning of behaviours. In order to reach any kind of sustained function, successful strategies often involve adapting the environment to prevent inappropriate behaviour from occurring in the first place. This is really hard work. It usually requires constant total supervision, highly structured and significantly altered physical environments and time-consuming interventions. This has huge ramifications for children who have been undiagnosed or misdiagnosed and are therefore being managed inappropriately. We have never asked a sight impaired person to read without the help of braille, yet we ask alcohol affected people to work alongside others every day without the special understanding or support they need to reach their full potential. This is why diagnosis is so important. Diagnosis gives visibility, and visibility expands options and leads to solutions.

We welcome the federal government funding that has enabled the development of the FASD diagnostic tool. We understand that the report from this project is currently being considered by the Department of Health and Ageing and we would like to register our very strong support for its recommendations, findings and conclusions.

The tragedy of children born with FASD cannot be understated and neither can the cost to society in both human or economic terms. Our daughter's diagnosis came too late to give us the knowledge we needed that may have helped prevent the many secondary disabilities she has since experienced. Secondary disabilities take their toll on families and communities. These are just a few of the issues that families we have supported have had to deal with: suspension and expulsion from school; leaving school early without formal qualifications; problems maintaining employment; mental health issues, some requiring time in psychiatric institutions; alcohol and drug dependency; being in trouble with the law or being incarcerated; being victims or perpetrators of bullying or physical and sexual assault; unwanted pregnancies; and inappropriate sexual behaviour.

The emotional stress and frustration that families have to deal with when parenting a child with FASD cannot be understated. They struggle to care for their children, and sometimes adults, because of a lack of understanding by service providers who do not recognise or understand the disability and often do not respect our efforts to describe it. Families are severely hampered in their parenting efforts because of insufficient resources and services specifically for FASD. Typical behaviour modification programs do not work with these children, but most professionals are not aware of this. When seeking help and resources, families often encounter a lack of services, blame, discomfort, denial and simple ignorance, and they find themselves in the unenviable position of assertively defending their competence as parents over and over again. Yet who knows their children better than they do and who lives with the problem closest to their heart?

I can see that individuals with FASD are some of the most difficult that professionals will ever have to face, but as a parent I can expect no less than maximum effort and maximum understanding. My daughter, and all others with FASD, deserve better.

CHAIR: Thank you very much, Ms Miers.

Mrs Russell : I will be very brief.

CHAIR: It will be hard to top that.

Mrs Russell : Sue knows I am proud and I am pleased to bring to this issue academic background, postgraduate study on prevention and a work background of 20 years working specifically with traumatised women and children, and have most recently come from a community development role within the alcohol and drug sector. That is really me; that is my introduction.

CHAIR: We have had evidence already today about that tension between perhaps society being a bit patriarchal telling women not to drink alcohol during pregnancy, and contrasting that with the fears of pregnant women who maybe are concerned about prior alcohol consumption before they find out they are pregnant or even after they find out they are pregnant. Would you like to just talk about that tension between those two and how we manage it? You have worked in the problem area.

Mrs Russell : I think assuming it to be patriarchal is a little bit of a weak argument. I think that women are generally able to, and want to, attain as much information about their own health as much as foetal health. I always put that argument first: that we need healthy women to have healthy children and one should not assume that one can happen without the other. This is part of the deal. It is biology. Sometimes we talk about alcohol in pregnancy before we have that discussion about what alcohol is doing to women's health generally, and in that sense perhaps the models of practice that we have had have been gender biased because males traditionally were the drinkers. That has, of course, very rapidly changed in the last couple of decades.

CHAIR: And you heard some of the answers Mr Harper responded with.

Mrs Russell : That is right, and so we have got to get with the times, and I think that in terms of service delivery, for example, within the alcohol and other drug sector, we have to look at having gender specific training perhaps built into professional development so that people are aware that women rely on relationship for recovery. I am speaking very, very generally here. They are very unlikely to approach a stranger to talk about their alcohol use or their alcohol dependency. They would tend to disclose that in a relationship context that has been established over some time. What I am saying in that is that the service provider that hears that, or helps with the recovery, may not be a health worker. I think it is much broader than that.

CHAIR: Do you want to name professions that you would be considering?

Mrs Russell : I just think it is any worker, any community service provider who engages with women needs some level of baseline training in order to be able to respond in that moment to a woman's disclosure. But we also need to be normalising conversations about alcohol so that we are responding to the normative use of alcohol.

CHAIR: In the health system or—

Mrs Russell : It could be any system. I think it is bigger than a health issue. To ask the health system to deal with this entirely is not getting the whole story—it is not catching the whole story.

CHAIR: The alcohol manufacturers, the alcohol industry, their evidence was the opposite of yours. They said target at-risk groups—target pregnant women and other at-risk groups.

Mrs Russell : What makes them assume that pregnant women are an at-risk group?

CHAIR: I am not here to answer for the alcohol industry. I am here to ask the questions.

Mrs Russell : No, and I cannot answer for them either, because I think we cannot think in the same way that perhaps that particular group does about the problem. I am simply stating that this is the way I see it from both experience and from my learning and academic study and my many, many travels overseas to Canada and looking at the way in which they have undertaken prevention.

CHAIR: On a national basis or a provincial basis?

Mrs Russell : Yes, or local—whatever. That is the second part of the story. B think we have such regional and locality differences in this vast country that we live in, that we may have to have adaptable tools as well to respond to different communities and different socioeconomic groups. We know that one of the at-risk groups are college educated women.

CHAIR: Is that right?

Mrs Russell : Yes. When I do education with professional women the very first part of that training is about values and beliefs about alcohol use because they are drinkers. This is just such a complex issue because it touches all facets of culture.

Ms SMYTH: I wonder if either or both of you could comment on changes in attitudes within, as a starting point, the health sector and health professionals in terms of their awareness of and responsiveness to FASD and people who are presenting with the long-term health impacts of FASD and women who present at pregnancy with a set of fairly risky circumstances.

Mrs Russell : There is a famous saying, one I like to quote, that Nancy Poole said to a woman called Ann Dowsett: 'Don't ask what's wrong with the woman; ask what happened to the woman.' Where you are talking about women with risky drinking, you are also talking about histories that may be marked with a whole range of precedents, trauma and poverty. We are talking about high-risk drinking women. And what we have to remember is we are really talking about all women when it comes to some sort of national prevention: a primary prevention strategy has got to target the whole population.

Ms SMYTH: I am asking what the reaction is from health professionals of different backgrounds, whether they have a reasonably high level of awareness and whether that has changed since you have begun the work that you are doing.

Mrs Russell : I think so in terms of some of the health workers, certainly midwives who are involved directly with the women. But even they are saying many of the high-risk drinking women are not coming into their service until perhaps just prior to delivery. We have got to look at other ways of accessing high-risk women.

Ms Miers : The other issue is those that have been drinking very heavily and have stopped drinking as soon as they have found out they are pregnant, but that might be three to four months into the pregnancy. We have got to start before then.

Ms SMYTH: My question really is: do you think health professionals are picking these things up?

Mrs Russell : I think they are, but only in specific areas of health.

Ms SMYTH: Do you think they are picking them up in terms of the long-term impacts of FASD? Ms Miers, you mentioned your daughter was diagnosed as affected by FASD fairly late in life.

Ms Miers : Yes.

Ms SMYTH: And you mentioned specifically that that was not a diagnosis that you found was available in Australia. What is your sense now of the experience of health professionals—are they appropriately trained and aware of these issues?

Ms Miers : No. We are getting that back from parents all the time who are struggling with that. They are aware of the child's history, they are aware of the problems, they have done their own reading and research. Then they go out to try and get help and they end up educating the service provider—if the service provider will listen. Many service providers will not listen to them, so they go through a terrible experience of being made to feel as though there is something wrong with them: 'Why are you coming to try and get this diagnosis for your child? What would you want to stigmatise your child for?'

I cannot imagine any other condition where we think it is not okay not to know exactly what it is that we are dealing with; where we think it is okay to send someone away and tell them that their child is just 'developmentally delayed' or 'they'll grow out of it'.

Ms SMYTH: You are a national organisation. Geographically, it is presumably harder for people in the regions to get a diagnosis.

Mrs Russell : I am the educator and most of the training I have done recently has been in the Northern Territory and northern Western Australia. The kinds of people who are coming to those groups are foster carers, where they have tailored education specifically for those groups. But what is really interesting in communities like Broome and Port Hedland is that I am getting composite groups of service providers, so we are getting people from the Broome prison mixed in with people from child protection, child welfare, child care and Centrelink. So it is quite a different process to offer training in a smaller regional community from what it would perhaps be in the middle of Melbourne. Word gets out, and there are quite distinct processes that happen there.

Ms Miers : We would have only a handful of people to whom we would feel confident to refer someone.

Ms SMYTH: You mentioned a moment ago the criminal justice system. I do not think we have had much evidence yet about FASD and its implications for criminal justice. Do you have any comments on that?

Mrs Russell : I recently presented at a forum in Melbourne, which was really interesting. It was run by Anex. At the forum were some workers from the prison and some from the post-release, reassimilation-into-the-community kind of non-government agencies. They are really keen to get me back. It is a particular interest of mine because I have a major in criminology. I am really hopeful that, once we can get that gate open, there will be others who will become interested. It seems like this will be the pattern in Australia—that is, rather than having nationally targeted campaigns for educating workers, it will have a snowballing effect, if I can use that term.

CHAIR: Can you talk a bit more about your interaction with the criminal justice system and FASD?

Mrs Russell : In the past I worked in juvenile justice, for example, in a detention centre. Whilst I cannot tell you with any authority whatsoever how many of those children would have been affected, I have my suspicions that they are fairly overrepresented. You certainly get varying degrees of learning impairment.

CHAIR: What about physical manifestations?

Mrs Russell : Not often. I think we are looking at behavioural outcomes. That is not to say that they did not have the physical hallmark features as babies and young children, but the face dissipates with age anyway. We know it is not a marker by late childhood.

Ms Miers : And it is not the most common outcome of prenatal exposure, either.

CHAIR: You can join some dots in terms of behaviours you saw?

Mrs Russell : Yes, we can—neurocognitive impairment, particularly in boys. There was memory impairment and very poor planning skills in terms of setting goals. In a cognitive behavioural therapeutic environment, which is where you want children to understand their behaviour and make those adaptations, they just do not get it.

CHAIR: So, at the punitive end of where you were, even at that stage were some CBT treatments successful?

Mrs Russell : There would have been in the sense of some of the children, for sure.

CHAIR: That might have occurred 10 years before they interacted with the—

Mrs Russell : Yes. But, for a lot of these children, that kind of rehabilitation does not work. It is just another dimension to this problem, because we really have no idea of the prevalence in juvenile justice or in corrective services. I would suspect that it is very high.

CHAIR: It is not currently recognised as a disability. If it were treated as a disability, how would that influence the whole approach to it?

Mrs Russell : I would hope that we could set up mechanisms for screening the at-risk population groups, if I can call them that, such as foster children and juvenile justice clients. They are screened for so many things now when they come in. I am probably shooting NOFASARD in the foot here by saying this: it might not need to be for foetal alcohol spectrum disorder. Ideally, we want to know that information back here, not at the ages of 14 or 15 when they have reached the point where they are in so much trouble with the courts, and the courts have no other choice, because, believe me, they have done a lot of alternative sentencing.

CHAIR: Yes. It takes a lot before you get incarcerated as a juvenile.

Mrs Russell : It sure does. Incarcerating children is not an option that magistrates particularly like. I try to push the barrow that it is often a captive audience. It is the very best time to do some work with some of these kids.

CHAIR: You know they will turn up!

Mrs Russell : You know they will turn up! And there are ways in which you can work with them. It took a while, but I found some really effective group strategies. Slowly you change the culture and you start to have conversations with workers there. Then we did training with all the workers around foetal alcohol exposure. So there is hope. I have got to say that. There is hope.

Ms Miers : If we do have a diagnosis and we know what it is, you are much better able to deal with it, because then you know you have got a child that is not going to learn from their mistakes, that does not understand cause and effect, that may be acting about half their chronological age in their ability to live in society independently.

CHAIR: Which is a cost to society, surely?

Ms Miers : Absolutely. And it is a bigger cost if you do not know.

Mrs Russell : In a group session I would have boys of varying degrees of ability. There would be some boys at 15 who would be colouring in books that a child of six or seven may use. There would be boys with quite high intellect with appalling family histories. I guess what is important about this discussion and bringing juvenile justice into it is that you see the tail end of lack of early intervention. We know who these children are back here.

CHAIR: So it is more cost effective to intervene early?

Mrs Russell : Goodness me—it is $300 to $400 to keep a child in a detention centre a day. It is quite easy to do the sums.

Ms Miers : Just as an example, at one stage I counted that our daughter had 17 support services in place for her and her partner, if you counted them all up, and none of them were talking to each other. If we had understood she had foetal alcohol syndrome much earlier, for starters we would not have been getting extra tuition and everything for maths to try and bring her up to speed because they thought she was just developmentally delayed. We would have done a lot more life skills teaching and a repetition of things you need to know in life so you behave the right way through doing it over and over again as you are younger rather than expecting them to pick it up like every other child does. There are so many things you can do earlier that are not random controlled trials but it is the knowledge that has come about from this being recognised in Canada. Service providers there have been working with families now for 30 years. There are projects where what works best with families has all been documented. Also documented is what families say best works well with children. We know there are a lot of things about changing the way we view the child and changing the environment the child is in so that they can have the optimum environment for learning. These are children that do not cope well in our normal classroom situation, because normal classrooms usually have quite a lot of clutter, bright lights—

CHAIR: Yes, to stimulate children.

Ms Miers : And these children need totally the opposite. We need to know that.

CHAIR: Obviously it costs money for the state if FASD is recognised as a disability by the federal government. We are in the process of bringing in a national disability insurance scheme; it costs a lot of money. We have got a lot of money on the table in the current budget. In terms of dollars, you have talked about early intervention saving money later down the track. This is a cost. Would you like to talk about the money associated with such a process?

Mrs Russell : If we do not do early intervention, just take, for example, that population that moves through the juvenile justice system and into our prisons. What are prisons currently costing this country? We have got overcrowding, we have got people incarcerated who probably did not even know the difference between guilt and innocence, let along respond to any of the expectations that we have for them to address their behaviour. That being said, they generally do very well in prison, because prisons are very bland environments; they have a lot of structure. You are told when to do what you are required to do. Tasks are often very simple, like keeping yourself tidy. You can follow the crowd to meals and what not.

CHAIR: So these people might be long-term recidivists out of a sense of security?

Mrs Russell : Absolutely. They are alienated in their community.

Ms Miers : They are isolated.

Mrs Russell : They often get early release. They go into the community, their life falls apart within 24 to 48 hours, they are offending and they are back in the door. One of the key indicators that we have got to look to track those people at risk in our prison system is repeat patterns of offending where there is no escalation of offending, because they tend to do the same thing.

Ms Miers : They think they are not going to get caught.

Mrs Russell : We do not know a whole lot about adults. The other group—I hope I am not dominating too much?

Ms Miers : No, you have got all that off pat.

Mrs Russell : The other group that occur to me are the parents of children in the child protection system—

CHAIR: Birth parents?

Mrs Russell : birth parents who may themselves be affected. One of the things in terms of cost that I feel passionate about is that we continue to set up parents with the notion that they can be reunited with children when they have no hope of keeping those children safe. What you have got to understand about people with foetal alcohol spectrum disorders is that they will come along to a case management planning meeting and they will agree to the court to do X, Y and Z—'Anything to get my kids back.' These are not unloving parents. They want their children back more than anything, but they have no hope of following those strategies that are put in place. So what do we invest in terms of children in foster care that are continually recycling and being reharmed and redamaged by this process when the courts do not ask for an assessment of the parents often.

CHAIR: Unless there is a question about the capacity of the parents, that would not be asked. The fundamental principle is the state is not a good parent.

Mrs Russell : No, it is not.

CHAIR: You have got to be a very, very ordinary parent before the state steps in, as I am sure you know. There is the bond between a parent and their child.

Mrs Russell : I am very, very supportive of that; I think that every effort should be made to maintain the bond between parent and child. What I am saying is that these children often cannot live in the care. If you have got a 25-year-old parent who is developmentally 10 years old, are you going to place a child with them? That is what happens.

Ms Miers : We are experiencing that now. We have our daughter's daughter, our grand-daughter, in our full-time care. Our daughter would love to parent her but she is not able to. She is more like a big sister. She can cope with it for a few hours at a time, but parenting is not like that. She has got really good expressive language, so a worker coming in would not deem her to not have the capacity to look after a child because she knows how to talk the talk and to appear as if she can do everything.

CHAIR: We know that there is a strong alcohol culture in Australia and you have heard some of the evidence we heard this morning, particularly about pregnant women drinking on special occasions. I am not sure if you were here for the AQUA study provide presentation. Would you like to comment on how we should be targeting alcohol rather than pregnant women?

Ms Miers : It is alcohol that causes the problem, not the woman. So why are we blaming a woman for something that is caused by a product that is a toxin and a teratogen that we know causes harm to the developing foetus? I think we need to take the focus off the woman and put it back onto the alcohol.

We are looking at the pictograms. I have been told by Indigenous communities they like the pictogram with the cross through, but we also heard yesterday at a forum that they like the really hard-hitting, Grim Reaper type of information. The wider community do not. We believe women need to be told about the harms of alcohol, but we prefer a pictogram that has a woman cradling her pregnant belly in one hand and her hand up saying no to alcohol, so you are giving the power back to the woman. You are not saying, 'You don't drink the alcohol.' A woman is saying, 'Stop, don't give me alcohol because I am pregnant—and I'm making the choice.'

CHAIR: But aren't you just quibbling here? The alcohol industry is taking steps to inform people, they have got DrinkWise, they have got labelling.

Mrs Russell : I think you are being a bit of a devil's advocate here, I have a sense. If you want me to ask, can I lead the inquiry for a moment?

CHAIR: No, you cannot.

Ms Miers : I do not think a pictogram is enough information, either. I think you need some words as well. And I think the pictogram needs to be where you can see it. The French put a pictogram on quite some time ago, and I have a friend who is tied up with Orlando wines—or it was Orlando; they have been taken over by Reckitt and Colman, or someone else by now—and he said to me there is now a label about pregnancy, and he sent me an email with the labels. It took me ages to find it—I did not even think the label was there, because it was so small. I think it is very similar to the ones being done here. They are probably following the French example. They are so small that I do not think they are going to be particularly helpful.

CHAIR: The French take their wine pretty seriously. I do not know what alcohol consumption is in France, but on a per capita basis since the seventies alcohol consumption in Australia has gone down by about 20 per cent—a 20 per cent per capita decline in alcohol consumption since the mid-1970s, so you could put an argument that labelling is not needed because alcohol consumption is already on the decline.

Mrs Russell : I think the evidence very much supports the notion that labelling is just one of the things we need to do in a composite group. There is not the evidence there to support it as a sole action, if you like.

Ms Miers : It raises awareness, and awareness is the first step towards behaviour change.

CHAIR: The alcohol industry is targeting pregnant women, trying to prevent—

Mrs Russell : They are going to do it, as I understand it, in rotation. Not every bottle is going to have a drinking in pregnancy warning label. I think you need to back that up, because people become very resilient to labels on things, I would have thought—like on cigarette packets. They will say, 'Don't give me the one that has got the drinking in pregnancy label'. I think we become a bit immune and desensitised. My point is, it is still a consumable product and we have to know any of the risks. We would want to know what the sugar content was—that is why they developed light beers and diet beers, because people were choosing options. We cannot expect women to make a choice unless they have really good information. The information has got to be there.

CHAIR: Thank you for taking the time to appear before us today.