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Standing Committee on Social Policy and Legal Affairs
Foetal alcohol spectrum disorder
House of Reps
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Standing Committee on Social Policy and Legal Affairs
CHAIR (Mr Perrett)
Stone, Dr Sharman, MP
Neumann, Shayne, MP
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Standing Committee on Social Policy and Legal Affairs
(House of Reps-Tuesday, 31 January 2012)
Content WindowStanding Committee on Social Policy and Legal Affairs - 31/01/2012 - Foetal alcohol spectrum disorder
EMERSON, Mrs Rachael, Support Worker, Wee Care Shared Family Care
O'LEARY, Mrs Deborah, Foster Carer, Wee Care Shared Family Care
TRAVERS, Mrs Carolyn, Team Leader, Wee Care Shared Family Care
Committee met at 15:13
CHAIR ( Mr Perrett ): I declare open this hearing. These are a proceedings of the parliament. Everything said should be factual and honest, and it can be considered a serious matter to attempt to mislead the committee. As this hearing is being held in an aquarium, any attempt to do so will involve your being fed to the sharks! This hearing is open to the public, and a transcript of what is said will be placed on the committee's website. It is also being streamed live on the internet.
Welcome. While you are coming forward, I also acknowledge the traditional owners of the lands that we are gathered on and thank them for their continued stewardship.
Would any of you like to make a brief introductory statement before we move to questions?
Mrs O'Leary : My husband and I have been fostering for about seven years. We have two gorgeous little girls. They are sisters and they both have a diagnosis of FAS. We consider it lucky that they have the diagnosis, because that means we can then go out and get these services that will help them along their way. We want to access all the services available to them. They have already used a lot of the services: dieticians, physios, OT, speech, feeding clinics—lots and lots of services. The cost of that is enormous, so if that could go to preventative measures, that would be a great thing.
We are there for the long haul for our girls, so we want to get the services for them. We sort of consider them—it might sound funny—as these beautiful little mystery pass the parcels. Each year we unwrap them or they grow a little bit more and there is something else there to surprise us that we were not expecting, and I think that will continue as they get older. We are learning as we go with these girls.
My oldest one has just stepped into the education system, which was a bit daunting for us—and I am sure for her as well. We were lucky that we were invited to a launch of an educational DVD from the Townsville Hospital Foundation about foetal alcohol syndrome and we went along. It was very informative. We had a copy and gave it to the school. We asked the teachers if they would like to have a look at it. 'Yes, please' was the answer. They were very keen. So they took it and all the teachers of the school have looked at it. We were hoping that it would help our little girl's teachers to understand some of her behaviours or some of the reactions that she may have to things that crop up in the day-to-day goings on at school which may not be along with everybody else in the class.
I think it would be a good thing if these sorts of DVDs were introduced into the higher levels of school so that we could prevent more foetal alcohol children rather than seeing too many more come along. Education would be the best thing.
We just want our little girls to be able to be the best they can possibly be, whatever that is. That is our aim.
CHAIR: Any other comment?
Mrs Travers : I can say that my experience with foetal alcohol spectrum disorder probably dates back quite a number of years. I have only been with Shared Family Care for under 12 months, but prior to that I was with the department of child safety, working with lots of young people. Like Debbie, I think it is a good thing that some of these children are diagnosed at an early age, because I have worked with young people who in their teens have not had a diagnosis but have the obvious symptoms. Their teen years are the area that I really like; I like teenagers for some reason.
CHAIR: That is a special gift.
Mrs Travers : Yes. But you see the changes. I saw some young people who seemed like okay young people, and they got to their teens and became absolute horrors. It was not just that normal change; it was changes that these children did not realise themselves: violence, anger, throwing things. It was all sorts of different things. I think that, as Debbie said as well, it would be good to get some of the education out there to the older teens who are looking at having babies so they can know what sort of effect it can have on their children.
Mrs Emerson : Here is a little bit about my background. I probably have a slightly different approach and perspective. My background with working with foetal alcohol syndrome was as a youth worker in Far North Queensland and up in the Torres Strait Islander communities. I have worked in a lot of the Indigenous communities up there. What saddened me the most was that it was so intrinsically part of this community that often these children and their difficult and challenging behaviours or ill health were just blamed on that community. 'It's an Indigenous community. It's a mission community. There's bad parenting skills there.' The children just live on the streets. It is just epidemic for those kinds of communities, and I think it is very sad that often they were just stereotyped because of the environment or the lack of social networking that was in those communities.
CHAIR: Even by health professionals?
Mrs Emerson : Yes. It was just like those communities were so dysfunctional that that was all we could expect of them. It was a generational thing. You had a mum and dad that you could see clearly had foetal alcohol syndrome, and now their children had foetal alcohol syndrome. It was going to be a cycle that was, sadly, going to be so entrenched it was almost expected.
The flip side of that was that, working in those communities in Far North Queensland, we were also working with a lot of rural and isolated farming families which often, because of the deterioration in economics in agriculture, were drinking heavily. The fathers were binge drinking on the weekends. So we were also seeing foetal alcohol syndrome presenting in those families, but there was a completely different perspective. It was almost a bit like sticking your head in the sand because 'that doesn't happen to our families'. For me, my main priority is about community awareness and education of the perceptions and stereotypes that are often attached to these labels. If you look at statistics now, you find that the highest number of foetal alcohol syndrome children we are seeing more recently are being born to middle aged women who have quite affluent lifestyles, because we have developed a culture of a couple glasses of wine every night for dinner.
CHAIR: What report are you quoting from there?
Mrs Emerson : It is through my part-time position. I also work with James Cook University School of Medicine and Dentistry, so this is more findings that I hear being discussed between health professionals at James Cook University. So it is not a concrete finding at this stage, but it is certainly what we are seeing exhibited through patients and the experiences of a lot of GPs around town. They are noticing the change in dynamics.
CHAIR: I was wondering if you could tell us about your training in terms of recognising the FAS characteristics.
Mrs Emerson : I am a social worker.
CHAIR: Was that part of your course?
Mrs Emerson : Not specifically, and I guess that is one area of need. Even now, I tutor with James Cook University School of Medicine and Dentistry, and I still think that it is a hidden disability or syndrome that we do not actually talk a lot about. So I must say my training was very light on and a lot of it was from working with GPs and health professionals in these communities.
CHAIR: So it was research with your colleagues.
Mrs Emerson : Yes.
CHAIR: So is it medical students and nurses at the institute you work at?
Mrs Emerson : Yes, it is medical students, physiotherapy and nursing students. We cover a whole range of James Cook University medicine and surgery.
CHAIR: All of those students have a component of FAS characteristics in their curriculum?
Mrs Emerson : I tutor years 1 to 2, so I could not confidently say what material is covered in their later years of four, five and six, but certainly from my experience with years 1 and 2 we do a subject called 'ecology of health' where we look at a lot of the issues and social implications of foetal alcohol syndrome in rural North Queensland. But it is more case work. It is more generic. There is not actually detailed clinical—
CHAIR: Do they do like a DSM IV type subject for physicians?
Mrs Emerson : Not that I am aware of, no.
CHAIR: Okay. I was wondering, Ms O'Leary, if before the children in care came under your roof DOCS made you aware that the children had been diagnosed or that they had FASD.
Mrs O'Leary : I got the children as soon as they were born, so they were pretty much a week old when they came to my house.
CHAIR: Did DOCS tell you about the characteristics of the mother? Do you know why the children were in care?
Dr STONE: Can you tell us when they were diagnosed, who did that and whether it was through your own explorations or you were given a package which said, 'It's likely these babies are going to have this problem'?
Mrs O'Leary : The diagnosis was written in their baby book when I picked them up from the hospital.
Dr STONE: As newborns?
Mrs O'Leary : As newborns.
CHAIR: Do you know why they were in care? Was there harm because of the—
Mrs O'Leary : Lifestyle of the mother, which meant that she could not care for them in general. She could not care for them and would not have anywhere to care for them.
CHAIR: And they are siblings?
Mrs O'Leary : Yes.
CHAIR: They are not twins? They are one after the other, so the mother was known to DOCS?
Mrs O'Leary : That is right. That is why I said the family history of lifestyle was known. Once we got the older child, it was terribly challenging and we thought, 'Whew, we've got through the first six months or so.' Then we started ourselves looking things up. Before that we honestly knew nothing about FAS. We could not imagine. Once we got this little girl, we started reading things, going to training, looking things up. We went everywhere. Then, when we were notified by DOCS that the mum was going to have another child, we thought it was best if we would take her or him if it were possible because at least then the siblings would be together and we have already dealt with a baby with those symptoms.
CHAIR: And DOCS knew that child would be coming into care because the mother had not changed her behaviours?
Mrs O'Leary : That is correct.
Dr STONE: Does the mother have FASD or FAS?
Mrs O'Leary : I do not know a lot about the mum.
CHAIR: Is there contact between your children and their biological mum?
Mrs O'Leary : There has been when the mum has gone into DOCS on occasion and said, 'I would like to see my little girls.'
CHAIR: So there is no standing arrangement.
Mrs O'Leary : No.
CHAIR: It is an ad-hoc, haphazard—
Mrs O'Leary : When she feels she wants to and presents. Then they ring us and we bring the children to see her at the DOCS office.
CHAIR: So you are quite flexible.
Mrs O'Leary : We have the children dressed, ready and waiting, and the mum would not come, so the arrangement we have made is that, if Mum comes in and she is presentable, they ring us, we get the child in there.
CHAIR: So you do not break the kids' hearts by turning up there and the mum not being there.
Mrs O'Leary : They would have seen her maybe once or twice, and that is all.
Mr NEUMANN: You talked it being challenging. Can you tell us about the challenges you faced caring with two children with FASD?
Mrs O'Leary : In the beginning, this little one who came to us was so tiny that that in itself was a bit scary for me. She fit into a laundry basket beside our bed. I could not put her in a cot, she was so tiny. She had feeding problems. She would take hours to get through a bottle. We would just get her to sleep and it would be time to feed again, so it was fairly constant around the clock. Erratic sleeping as a little baby was another problem. One of the children would be able to swallow milk, but the brain was not talking to the right part. She could take in the milk but was not swallowing it. It was mostly medical things at that tiny age. There was a lot of crying.
The oldest one we could not pat or touch. You know how you like to pat little babies' heads to try to soothe them. She would scream and scream. It was just, 'Don't touch me.'
CHAIR: And yet you signed up for the second one.
Mrs O'Leary : Sisters. We try to keep them together. If they have nobody else, at least they have each other when they grow up—except for us.
CHAIR: That is very commendable.
Mr NEUMANN: You raise the issue of medical things. How were your primary healthcare providers, particularly your GP, whom you would no doubt have spoken to on many occasions?
Mrs O'Leary : They have always been very supportive, and we have always been able to access the treatments that we think they need. We would go to the doctors and say, 'Look, she's just not putting on any weight.' As it is they are both very tiny children. The oldest one has started school and she is 12 kilos. She would eat like a mouse. So we have constant dietician visits. We have OT. When one of them was little she had a torticollis, so we had lots of physiotherapy and OT for that. Whenever we have done in pursuit of what we can do about our child—'She's got this, and this is a problem'—we have always been able to knock on doors loud enough that somebody helps us.
One of our children does have an abnormality of the hands. It has been a long haul getting that in. It is only this year that we will be having some medical intervention to correct her hands.
CHAIR: Is this coming out of the DOCS purse?
Mrs O'Leary : When they are babies we used a lot of the services through the hospital. Sometimes it has been such a long wait until we could get something that we have gone privately and done it ourselves. We have had one ear infection after another, and the waiting list was too long. After six months of this, she could not hear a thing. She was not saying any words at all, and it was well and truly time for her to speak. She could not say 'mum mum mum' or anything like that. We went, 'No more.' We went privately and put her into the Mater to get it done that way—always with the permission of DOCS. But sometimes you cannot watch them—
CHAIR: We certainly heard evidence today of the problems of healthcare costs associated with FAS children.
Mrs O'Leary : Yes. The operation that we are getting for the oldest one in April DOCS have been very good in supporting us for, because the surgery can only be done in Brisbane. They are flying us down there to do that. But for general day-to-day we either go to our GP or, for services like physio and OT, try to go through the system if we can.
CHAIR: And your GP was across FAS? Do Ms Emerson and Ms Travers play an ongoing role in terms of consulting other health professionals?
Mrs O'Leary : Always very supportive.
CHAIR: The health professionals understood, anyway.
Mrs O'Leary : Yes. We went to him first and went: 'We have these babies. This is what's wrong with them. We don't understand a lot about it.' He had a very long consultation with us and explained in detail what happens to the brain. He gave us a lot of websites to have a look at and things to read.
CHAIR: So he was well and truly aware.
Mrs O'Leary : Our GP was. I do not know about across the board, but that was very much the case with ours.
CHAIR: Is it because of your children or their practice? Do you know?
Mrs O'Leary : It was recommended to us that this particular doctor was very good, so we headed that way. He was. He has a private practice.
CHAIR: He was not your GP beforehand?
Mrs O'Leary : No.
CHAIR: All right.
Mr NEUMANN: Ms Emerson, when you were talking before it struck me that you were giving a very similar analogy to what happened with HIV. It was thought to be something in the gay community, and then there was greater understanding that it was in the broader community. What you were describing to us was thinking that FASD was something that was experienced in Indigenous communities in Far North Queensland but in fact, in the broader community, particularly in rural and regional areas in North Queensland, there were these problems as well. Obviously education, information and knowledge is crucial to prevention. How do you think that we as a general community can broaden that understanding?
Mrs Emerson : That is the million-dollar question, isn't it? I suppose it is like a lot of other social issues that we struggle with education about. Smoking is another one. I think our biggest challenge with foetal alcohol syndrome is that drinking is very much part of the Australian culture, so we do not want to know about it. We want to think it is okay to have a Saturday-night drinking session with the boys and watch the footy—
CHAIR: Or girls.
Mrs Emerson : Or girls, yes; I should not stereotype. More importantly girls in this situation. But it is very much a part of who we are, so I think we really have to target our young people at an earlier age. It is just repetition and getting that message out there. It is like with smoking: it has taken decades. But I would like to think that the same campaigns and mindset would be developed in future generations.
CHAIR: With smoking: the XXXX stubbie I drink has not changed pretty much in the last 30 years, but the packet of cigarettes I have has significantly changed. Where I can smoke has also changed significantly, whereas where I can drink has not changed. In fact, there would be more venues to drink at than when I was 18.
Dr STONE: When I was growing up, ladies were not allowed in the bar.
CHAIR: Would you like to comment on that in terms of your experience, particularly having been in Indigenous communities, where the rate of smoking is well above the Australian average of 19 per cent? It is much higher. The rate of alcohol consumption is significantly higher, though I do not have the data.
Mrs Emerson : If you listen to news reports recently, I think in some ways we are almost taking a backward step. The latest story to hit the news is about alcopops and the marketing that is being done for the premixed drinks that are targeted towards young people as their introduction to alcohol. They are particularly targeting women. If you have not heard, there is a milkshake that tastes like strawberry but is laced with vodka. I question where we are going with all of this. We are saying we are promoting all of these as introductions into drinking. That terrifies me. I think this is when we are getting young people who are not particularly vigilant with their contraception. We are getting young people who are already going to be struggling on a parenting journey at a young age because of lack of life experience. So now we are giving them alcohol that is supposedly targeted to their age group and which they do not have the mindset to be able to control. I think that is setting them up to fail in many ways.
Dr STONE: Debbie, I was impressed as you described your ability to access a number of services for your two girls, because we have just taken evidence in Cairns from foster parents who have constant brick walls. They had five FASD foster children in their care.
CHAIR: They are in the Tablelands, so they are not as close to a big city, but still.
Dr STONE: So in Townsville it seems like you have some informed health professionals, which is magnificent. Is that translating into the midwives and the average GP? You had to seek out this physician or GP who you had been told was more enlightened? Is it that you have been able to advocate your way through to special help with your two daughters or is there in Townsville in particular some better FASD understanding? Does that in turn translate into schools education for the students? We have heard Rachael is giving James Cook students some tutoring in their first and second years. Caroline Da Costa is active in this community, isn't she? She is an amazing person with regard to this and other reproductive health issues. Is it the case of leadership of a few health service professionals in a community? Is it that you have a bit population of heavy drinkers with the Defence Forces, Torres Strait Islanders and local Indigenous people as well as the other remote people you referred to. Why is your experience so different from that of a lot of other foster carers?
CHAIR: On the same line—and I throw it open to all of you—we have spoken to other shared family care type foster groups and they had no idea what FASD was about, whereas you are obviously very informed. That is a lot of questions!
Ms Emerson : I know from my experience that we are very fortunate there is a professor by the name of Dr John Whitehall at James Cook University who is doing some groundbreaking, leading edge research into foetal alcohol syndrome. I know he is well-recognised here in Townsville and one of the blessings of being a small community is that people talk. It is the old cliche about who you know. I know that a lot of his contacts and information are being disseminated locally.
Dr STONE: He is a local champion, in effect.
Ms Emerson : He is. One of my roles is the training coordinator with Shared Family Care, so I have actually approached him to talk to our foster carers to give them some more insight into not only what it is but a sense of purpose and hope as to opportunities for the future.
Ms O'Leary : I was lucky enough to have a great paediatrician. She knew a fair bit about it from her medical history and where she worked. So she was very open to me questioning her and asking, 'Where will I go? Who will do this?' I must admit, if it is going to help my girls, I am going to knock on doors and be a pain until somebody—
CHAIR: You would have reposed a lot of trust in her and her knowledge, because it is a massive challenge.
Ms O'Leary : It is. She was very supportive. She was always there. We would run into her walking the Strand and she would go, 'How are my girls? What are they doing? How are they coping with this?' et cetera. She was very good. From there she would often contact us to say, 'There is something happening about foetal alcohol syndrome. Would you like to go?' and that sort of thing. I think that is how we got invited to the Townsville Hospital Foundation FAS DVD launch. She was always good and we were always asking her, 'Where will we go if we want this?' We were offered services through the hospital system for OT and physio for the obvious things that—
CHAIR: Through Queensland Health. So you are getting it from the foster group, Queensland Health, GP services in the area and then academic support as well.
Ms O'Leary : Exactly. I also started reading and finding things. I went up to Cairns when Anne Russell had a seminar up there. I flew up there one weekend and she was having a training seminar. Even though it was mainly for nurses and doctors, she let me step in because I wanted to know. I said, 'You can just let me sit at the back if you like; I don't care.' I just keep asking people whether they know anybody who does this, this and this. Early intervention has to be the way to go. They are little and they need it from now on.
CHAIR: As Ms Emerson said: prevention first and then early intervention for the ones that do come through the gap.
Ms O'Leary : Exactly. I do not know about the big school. My children have all grown and have children of their own. Now I am starting again with the education system. But I do not know what is in the high school and whether they have a life or a health system. Perhaps that sort of program could be incorporated there: babies and alcohol do not mix. It needs to stop there really. I know that is a big ask.
CHAIR: We saw some dolls today that were incredible in terms of giving a visual cue straight away. Irrespective of your intelligence or inclinations for learning, they were very effective.
Ms O'Leary : They are. I saw those when I was with Anne. I have two little ones. One you can look at and say, 'Yes, definitely.' The other one's features are different. As we have said, it is not always the facial features. It goes a lot deeper than that. Now that my little one is at school, I am starting to see some different behaviours start already—anger, frustration and things like that.
Dr STONE: Following on from your supportive environment, which is wonderful to hear about, are you concerned about adequate diagnostic tools? Perhaps Carolyn and Rachael could comment too. One of the problems with diagnosis very early is that in Australia we are still developing our Australian diagnostic tool. I do not know why we have set out to develop an Australian tool rather than just grab one off the shelf from Canada, the US or someone. Are you familiar with cases, other than your two girls, where doctors are struggling to not just call this autism or attention deficit or bad parenting, which are the stereotypes you have mentioned, Rachael? Do you see it as a key issue that we in Australia have a lot of doctors who were trained 30 years ago, before FASD became internationally well understood, so we are in a time warp in terms of medical catch-up? To me one of the key problems is the lack of medical awareness and expertise in health service professionals to nail it and to then feel confident enough to say: 'Did you drink during your pregnancy? Tell me about it because I suspect there may be a link.'
Mrs Emerson : One young person that I can think of has a number of other medical conditions as well. The thing I find is perhaps the biggest detriment to this young person is this ideology that they have to tick a box, not several boxes. So it is: 'Do we say it is foetal alcohol syndrome or do we call it autism? Or do we say it is hydrocephalus and all the behaviours are in response to hydrocephalus?' It is like, which is the greater condition to tick. It then has the kind of ripple effect: 'This one is able to be covered under Medicare rebate. This one is not so we'll give him this label.' I struggle with that ethically.
Dr STONE: I understand that. That is another direction in which we need to go in getting this condition diagnosed; it needs a box so that people do not have to play around in order to get support.
Mrs Emerson : There is a ripple effect from that. As a support worker in an agency I am always very much aware that the boxes that we tick on these children's files stay there. So that now this little one has been diagnosed with this condition, which is now considered complex special needs, it means that 1limits the pool of carers who can care for him and that there is this ongoing ripple effect, none of which is of any service or benefit to him.
CHAIR: So funding is attached to it.
Mrs Emerson : And greater awareness that, yes, he may have autism or it may be a combination of autism and foetal alcohol syndrome. That is okay and we can work with that. Some of those conditions and behaviours will work hand in hand and a lot of the therapies and interventions will be equally beneficial. Why just tick foetal alcohol syndrome, because he is then considered 'mild, moderate', whereas autism is a bit more 'complex, special needs'. So we will just say it is foetal alcohol syndrome which means there is a greater pool of carers. But, then, of course, they struggle with his behaviours. I do not know; it is just chasing your tail sometimes.
Mrs O'Leary : It is totally about which box you tick. I have got my children into the early intervention team for education, so I have got that. But, by the same token, you have to fill out all the forms. 'Do they do this? Can they do that? Yes.' It is tick the box, tick the box, and if they have not got enough in the right box then, no.
CHAIR: And there is a definite line. You are either on one side or the other.
Mrs Emerson : With some conditions you are entitled to a carers support allowance or a high needs allowance, and you are also entitled to extra support at school. Whereas others are not entitled to the high needs allowance or that extra support.
CHAIR: In a world of a constrained budget you understand why that must be, otherwise every time my kid forgets to pick up his school bag, I will say I a special carer.
Ms Emerson : I struggle with ticking these boxes. Sometimes when these children come into our care they might be two. We know that generally speaking autism and some other conditions are often not diagnosed until the children are four. A box may have been ticked, but I would like to think that we have the ability and the power to either un-tick the box or tick a different box.
Ms O'Leary : I got a good feeling when at one stage our paediatrician had moved and we got a new paediatrician. They had conversed about the children and I had some hard books that I had bought about foetal alcohol and the paediatrician asked me if she could borrow them from me so that she could look at them and get right into it. She said, 'I need to know more about it.' I was really pleased. Also, at one stage there was a GP exam and people from all over the place came to Townsville, to the hospital. They were sitting their finals, or whatever exam, and they needed—
CHAIR: Were they specialists?
Ms O'Leary : They might have been. It is a little while ago now. I cannot exactly recall. But they asked, because my little girl has these symptoms and very obviously so, if she would be a guinea pig, a patient—you know what I mean. Everybody was suddenly very interested. So doctors were coming from everywhere to see her. I thought that was promising. They were including her—
CHAIR: As part of the training package.
Ms O'Leary : Exactly.
CHAIR: Could you tell me about education? I know you have only been at school for five minutes, but could you talk about that? You said you have attracted special education funding—is that right?
Ms O'Leary : I got the children into early intervention through one of our local schools.
CHAIR: Your older child is in prep?
Ms O'Leary : Prep. But I have got them both started. The little one is two and I have just started her in the early intervention team. What they do is assess the needs of children so that all the children will hopefully be up to a certain level before they go to school or before they start prep. If they seem to be behind in a particular area, they will be given support along that line. The littlest one is getting speech assistance to get her talking before she goes to school. Both the children have gone through the program.
CHAIR: With the classroom teacher?
Ms O'Leary : Our classroom teacher was very keen to have the DVD that I offered her.
CHAIR: So she was prepared to take on the challenge. She did not have knowledge beforehand?
Ms O'Leary : She said, 'That's right—you said she has some problems.'
Mr NEUMANN: Did she advise that she had had any training or any information about it?
Ms O'Leary : We have not had a chance yet. She is a new teacher and we have only been there two weeks. But I went down the week before school and had a chat to her and gave her the DVD, which she said she was more than happy to watch. She asked if I minded if she kept it at school to let the other teachers see it because there would be other children who may have the same behaviours, which may come under the same diagnosis.
Dr STONE: Carolyn, you are working well with teenagers, I think you were implying before. As we know, a lot of young people with FAS or FASD end up in prisons or offending and there are very few places that accept these people. I am talking about people who get custodial sentences, particularly juveniles. We know that police, magistrates and other court workers are not well informed about FASD or FAS. We have information from the US, where a very significant proportion of the incarcerated population has been assessed as having FAS or FASD. We have just done an inquiry into juvenile Indigenous people in the criminal system.
CHAIR: That was three of us on another committee.
Dr STONE: There was a lot of evidence about FASD and young Indigenous kids ending up in prisons and so on. What is your experience with the foster children who end up offending or who are getting caught up and being victims, on the flip side of criminal activity? What thoughts have you got about how we can deal with that?
Ms Travers : I guess my early experience comes from being part of the child protection system. I was a team leader with the department here and I worked a lot with children who had FAS. They had not been diagnosed but had obvious signs and ended up in the criminal system with youth justice problems. Now on the other side, looking at placements for these young people, it just does not happen. They end up in commercial accommodation for the most part with youth worker support. They do not understand themselves what is happening. I talk of two young boys in particular. It is my understanding that they are actually related to the two girls here. However, they were both fairly well-settled young men in a placement. When I was working with the department they were in a placement and were well-settled. It was almost like they hit their teen years and the normal teenage swaying towards the 'I am independent and I do not need your help' type of thing just went to the extreme. One of the young people was pulling knives on his carers and all sorts of things, threatening the other children in the placements. Every time I would talk to these boys they would say, 'I do not know what's wrong.' You would try to ask them why they were acting the way they were acting and they did not understand it. Of course, they were just seen as having bad behaviour—we know were they have come from and we know their parents. For these boys, both of their parents were and are alcoholic and now those boys are still on child protection orders but are actually drinking with their parents.
Now that I am in the foster care area, I see that more than half of the children with our service—and we are a mainstream service—are Indigenous. We have some fabulous carers like Debbie and John who are non-Indigenous and we support them by having an identified position as a support worker, which was the role I was sitting in. I am of Torres Strait Islander background. We have that position specifically for that because we need a support worker who can work with carers who have Indigenous children to help them understand the cultural side of things. So I was Debbie and John's support worker when I first started there and now I am the team leader.
I guess with the teenagers that is the difficulty. I know a lot of work is starting to be done, which is fabulous, but it is all too late for a lot them. They have missed the boat basically. They have no diagnosis so there is none of that support that comes through. When children exit care at age 18 here in Queensland, they do get support from Disability Services if they have a diagnosed disability. Of course these children do not, so they end up drifting and more likely than not they drift into the adult system. I have watched children grow through the system and become teenagers and it is like they are different people altogether. I have seen the two beautiful girls that Debbie and John have in their care. Certainly you can see with one of them that the facial features are there; with the other they are not. You could say she is a normal looking child. That is the difficulty I think. A lot of the young people I know from previous times do not have those facial defects or the different physical aspects.
Dr STONE: You are saying to us that there is not a system to support these kids in late diagnosis as teenagers. Even with those who are diagnosed with FASD and get into their teenage years and end up offending, we know what the problem is—their brain damage does not give them the capacity to work out rights and all those sorts of things—but we do not have a system at the moment supporting those kids. When you said these kids are in commercial accommodation, did you mean a hotel or motel?
Ms Travers : There are. There are also residential care services, but they only take so many children. There are services that actually provide care for young people who do not fit the foster care system or are drifting. Most of that is done in houses or in commercial accommodation. It is an extremely high expense to the department and, try as they might to get children into foster homes, for the most part we cannot place them. Our service only takes children who are of moderate and high needs. Then we have children like Debbie's two girls, who really would fit into a higher level again. As we are actually only funded for moderate to high needs children, when these girls came in that is where they fitted. We are seeing a lot more of that in our service, where we have got young people, and there are others I could think of with foetal alcohol syndrome, who are in our system with huge behaviours that would fit the extreme range. It is likely they should be with another foster care service, but they have come to our service under that banner and they remain with us because we have devoted carers who want to continue to care for the children. A lot of the children are Indigenous—the ones that I know of are. Yes, it is a huge issue.
CHAIR: And not a huge waiting list of foster parents to take 14-year-old kids that have problems that are high needs, I imagine.
Mr NEUMANN: Are there any diversionary programs whatsoever in relation to these kids? Otherwise, once they get in the system, there is detention and there is jail for adults. Are you aware of any diversionary programs at all?
Ms Travers : For teenagers—not that I know of, no. For adults, certainly; for teenagers it is generally Cleveland Youth Detention Centre. That is the diversion. I have actually spoken to young people who have said, 'I don't care if I go in there; at least I get fed and I get a bed.' At least there is some sort of routine. They want to change but they cannot. They end up alcoholic—
CHAIR: They like the order?
Ms Travers : They like some order in their life. I think what Debbie is providing for these girls is some structure and order, and it is working for them. There are still times when the older girl will scream and yell when she cannot get her own way—
Ms O'Leary : Yes, we are just getting to that, and even to the stage of not knowing why she is doing things. I will explain and say, 'Do you understand? This is what you can do, and you can't do that because of this.' 'Yes, mummy; yes, mummy,' and she will just go and do it again and again. She just cannot comprehend it; it is not that she is being naughty.
CHAIR: Ms Emerson, would you like to make a comment on the question that Dr Stone put to Ms Travers in terms of your Far North Queensland experience?
Ms Emerson : I think we are getting much better at recognising things, especially children who have got facial deformities. When they are younger and we can go to a doctor and say, 'They have FAS; we are struggling because we need help with their hearing' or 'with their speech,' we are very good at that, we can fix those problems, but sadly for a lot of teenagers, and then going into young adulthood, the issue we are not so good at dealing with is the trauma and the damage that has been done to their neurobiology. There are no quick fixes for that. That is in terms of therapy. I think we as a nation are not very good at dealing with mental health across the board, let alone now a new condition that is perhaps misunderstood and shrouded in different stereotypes. I hate to say it, but sometimes I almost hear a bit of a reflection of what we once heard about ADHD: 'Oh, there's no such thing; it's just that you just want to have an excuse for bad behaviour.'
CHAIR: And it is a spectrum disorder?
Ms Emerson : It is.
CHAIR: I taught for 11 years, and certainly 14-year-old boys have many of those characteristics. One might say every 14-year-old boy—I never taught girls—has those same characteristics, but it is obviously not their brain make-up.
Ms Emerson : That is where our deficit is: it is a hidden disability and one that is misunderstood. You get the old cliches about, 'All they need is a good day's hard work and a good smack on the bum,' and, 'We didn't have this around in our day.'
CHAIR: Obviously Ms O'Leary's evidence has indicated that we would support an engagement. It is a challenge that can be managed.
Ms O'Leary : I hope so. We are in the early stages. I think that early intervention and getting onto it as early as you can has to be the way to go.
CHAIR: Like every parenting job, there is a guidebook but sometimes the rules do not apply.
Ms O'Leary : They are not in there.
Ms Emerson : The antidote that I hang on to is: knowledge is power, and the more knowledge you have the better able you are to combat what is ahead.
CHAIR: That is a good note on which to finish. Thank you very much for taking the time to appear before us today.