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

RIBTON-TURNER, Ms Donna June, Director, Clinical Services, UnitingCare ReGen

ZIRNSAK, Dr Mark Andrew, Director, Justice and International Mission Unit, Synod of Victoria and Tasmania, Uniting Church in Australia

[12:23]

CHAIR: I welcome you both. Would you like to make an introductory statement before we move to questions?

Dr Zirnsak : Thank you for the opportunity. I should emphasise that we are appearing here as now the Synod of Victoria and Tasmania, not just the Justice and International Mission Unit because that is clearly both the Social Justice Unit within the church and our chief agency that is dealing with drug and alcohol matters. So, from the side of the Social Justice Unit, obviously our submission is very supportive of labelling, as one measure, to address foetal alcohol spectrum disorder, and as part of the raft of measures that are necessary it is the one we have been campaigning and focussing on as one of those steps. We have been particularly concerned, though, that this inquiry has had arguments put to it by the industry that labelling might lead to women terminating their pregnancies, and we find that a deeply disturbing argument to make in the absence of any solid evidence that we are aware of.

CHAIR: I think we had a reference to one study that was then extrapolated. We were not able to establish that at all in terms of evidence so far.

Dr Zirnsak : Indeed, and it is a deeply disturbing argument to make in the absence of solid evidence. We do note the detailed Parliamentary Library paper that has been put together on alcohol labelling. We think that is a good piece of work, and recognise that it does point to the difficulty of measuring the impact of labels in isolation. As we indicated, it is one of the measures that can be taken—we are supportive of it—but this is true of most public health responses to issues. It is very hard often to take a single measure in isolation and identify exactly what its impact is when there is a whole range of other factors that might be changing at the same time. So even if you introduce the label now, its impact might be influenced not only by the design of the label itself and its positioning on the product, but also by the marketing measures the industry is engaging in at the same time as the public health measures are being implemented. There is a range of factors that might impact on this. In the past we have looked at literature on public health measures, and certainly past studies on smoking where analysis has been done which says that when a person gives up smoking it is very hard to identify what measure or thing caused them to do that. Was it that they had a conversation at the breakfast table with a child or—

CHAIR: Do you know that—that there is not much debriefing of post-addiction behaviour? Are there studies in that?

Dr Zirnsak : Even if the person self-identifies and says, 'This is the reason I gave up,' it is hard for them to know then all these other factors they may have been exposed to along the way. Did they see advertisements as they were coming past on the tram? Did they see TV ads? Did they hear a Health Report at some stage? All that has influenced their behaviour. Even if they identify, 'This was the final trigger for me,' it can be difficult to isolate that from other measures. That is our understanding of the literature.

CHAIR: It might be something to look into. I would have thought that Alcoholics Anonymous or other groups that might be able to give us some information—and I will add Moreland Hall in particular.

Dr Zirnsak : Moreland Hall has changed its name to UnitingCare ReGen. It just happened very recently.

Ms Ribton-Turner : It is interesting that there are not a lot of longitudinal studies following people up when they have treatment for drug and alcohol issues. We have had just had one of our programs, the Catalyst Alcohol Rehab program, evaluated over three years. It was a three-year pilot funded by the government and it has now just been funded recurrently for the next four years. We have had external evaluation so we have got some data and some really interesting things coming out. For example, 63 per cent of people completed the program—it is a six-week, nonresidential program—compared to 23 to 46 per cent in overseas studies. Some really good things are happening. It is an alcohol specific program, and over three years it demonstrated significant reductions in drinking and, interestingly, other drug use, but also improvements in—

CHAIR: What does 'significant' mean?

Ms Ribton-Turner : Statistically significant, and I have some charts I can show you. Interestingly, it also showed improvements in mental health, physical health, emotional wellbeing and social functioning. Seventy-five per cent of people who completed the program had not relapsed to previous patterns of alcohol or drug use prior to the treatment. As for the group that use other drugs, 100 per cent had not relapsed to pretreatment drug use. So there is some interesting new information coming out. It is a very new service type. It has been a pilot, the first nonresidential rehab program we have had specifically for alcohol in Victoria, or in Australia, actually.

Dr Zirnsak : The other point we would make out of this, as highlighted in the UnitingCare Region part of our supplementary submission, is the absence currently of programs treating women with babies at the same time for alcohol related problems.

Ms Ribton-Turner : Our experience would say that you need a range of interventions. So, we would support the harm reduction interventions and, certainly, information and labelling. But we would also be recommending screening in primary health settings to pick up those women who are drinking at risky levels, or at more than the recommended safe levels; increased workforce capacity to deal with families and people, where there are issues; and, there are no dedicated withdrawal beds in Victoria where a woman with a young baby can go in to do an alcohol withdrawal. They do not exist in Victoria, and we think that is an important gap.

CHAIR: Could you tell me more about your intensive playgroup?

Ms Ribton-Turner : The intensive playgroup came about six or seven years ago when one of our staff went overseas looking at how other countries responded to intergenerational drug use. The playgroup was developed based on some of the things she noticed overseas. It is for women or family members who have alcohol or drug issues with children under school age. It has two folds. One addresses parents, so it engages them in treatment. Having children is a life-changing event for a woman and often that in itself is an emphasis for people to seek treatment. So, it is safe engagement for women—and men, but it is usually women. Secondly, it addresses some of the issues for young children, like being able to share, to sit in a room with other children, to play, to listen, to read and to sing. These are the sorts of behaviours that make these kids, when they start kindergarten and school, stand out already as being the problem kids. They start with different socialisation skills. It works both on engaging families around parenting and also on building the socialisation in young children so that they fit in.

CHAIR: So it is a dual therapy, basically.

Ms Ribton-Turner : Yes. And we have been running three days a week at our place in Moreland, but we have recently started two sessions a week out in Craigieburn. We started three months ago, I think, with a group in each and we have already gone to two groups a day in the two days we are in Craigieburn, and we have a waiting list. There are 300 vulnerable families out there.

CHAIR: In terms of reviewing it or analysing the results, is it a bit fuzzy or can you tell us more about it?

Ms Ribton-Turner : We have had a substantial evaluation. It was a pilot initially, funded by a trust. Then a substantial evaluation was done that ended up with us being funded by the department.

CHAIR: Why are they funding you? What are you doing that is good?

Ms Ribton-Turner : It actually increases parenting skills and confidence. It breaks down social isolation amongst this group of parents. Also, very importantly, parents, particularly women with drug problems, do not seek out normal things like Playgroup because they feel judged about their parenting and their drug use. That stigma—

CHAIR: How do you find these people?

Ms Ribton-Turner : From child protection referrals, Maternal and Child Health referrals, GP referrals or people who come seeking drug and alcohol treatment and have young children. Maternal and Child Health have been one of the big referrers.

Ms SMYTH: You have mentioned the intensive playgroup was for pre-school-age children. Is there any ongoing long-term interaction with the people who have gone through the program so that you get to see what their outcomes, slightly longer term, might be.

Ms Ribton-Turner : There certainly is not long-term evaluation, but—

Ms SMYTH: Just immediately post the pre-school-age?

Ms Ribton-Turner : Often the parents engage in treatment—parents who are just in that vulnerable group. For example, in Craigieburn there are a lot of those families where fathers are absent for long hours because of travel, or they might be newly arrived people or people who do not have a lot of family connections. They are not likely to enter ongoing drug and alcohol treatment. But the group who enter treatment, who actually have drug and alcohol issues, we tend to see over long periods of time, like all our clients.

CHAIR: Are these diagnosed children in terms of the intensive playgroup?

Ms Ribton-Turner : No.

CHAIR: Not necessarily?

Ms Ribton-Turner : No. Do you mean diagnosed with foetal alcohol syndrome?

CHAIR: Yes.

Ms Ribton-Turner : Not necessarily, but we have seen those children amongst our group. Our intervention at that point would be around engaging them in the playgroup but also referring them for specialist intervention. We also see some of those children—

CHAIR: When you say you see them, do you suspect it or—

Ms Ribton-Turner : Some are diagnosed and some are picked up on playgroup and then later diagnosed. But, interestingly, we have also seen young people in our youth withdrawal unit, who are engaged in out of home care, who have this diagnosis. We had one in last week.

CHAIR: Dr Zirnsak, did you wish to add to that.

Dr Zirnsak : No.

CHAIR: I know it has only been going for a few years, but maybe in terms of other programs that existed prior to that, have you anything to say in terms of intergenerational FASD? Are you dealing with grandparents that might—I suppose we are asking you to be a clinician here, but—

Ms Ribton-Turner : I have worked in the drug and alcohol field for over 30 years, so I can say that the group that we see in our youth withdrawal unit that we are involved with—which is 12- to 21-year-olds—particularly those that have come through child protection and out of home care there is an increased incidence of foetal alcohol syndrome, and these are the young people who are getting pregnant, the teenage mums, and the young people who are binge drinking and taking other drugs. In foetal alcohol spectrum disorder, there are a range of things that influence, not just alcohol use, but other drug use is expected to play a role. The age of parenting is expected to play a role as well as genetics. There are a whole lot of vulnerabilities in this group of young people.

Ms SMYTH: We have heard a bit of evidence throughout the inquiry from a range of places about perhaps the underpreparedness of aspects of the health profession to respond to or even recognise FASD as a potential disability or a health disorder. What is your experience about that? You have talked about referring people for specialist intervention. Do you think there is a growing awareness and acceptance of FASD as a real circumstance affecting some of your clients?

Ms Ribton-Turner : Not really, and I think that is why we have put workforce development as one of the recommendations. Certainly in my training, we had no courses on it. It is not something that is high on the agenda. Likewise, alcohol is not. People still go to GPs and do not get asked questions about their alcohol use.

CHAIR: Still, in 2012?

Ms Ribton-Turner : Yes. And we still have those conversations where GPs are concerned about if I ask someone about their alcohol use they won't come back, or they won't like it or they will feel uncomfortable.

CHAIR: Do they ask about smoking?

Ms Ribton-Turner : They are more likely to.

CHAIR: Why would that be? Because smoking is different, because you can see nicotine on fingers or Winnie Blues poking out of your—

Ms Ribton-Turner : The health effects probably come more quickly so they are more likely to have colds, coughs, lung infections and things like that, and I guess it has become more acceptable to ask, whereas asking someone if they have a problem with alcohol is difficult.

CHAIR: If we can go back to the intensive playgroup or perhaps your 30 years of experience, can either of you make a comment on the situation where people drink through multiple pregnancies and children continue to be affected by FASD? Have you encountered that?

Ms Ribton-Turner : I have not seen that. You would probably see it in specialist services like the royal women's perhaps.

CHAIR: I thought you said some of the referrals to your intensive playgroup were from a child in a family—

Ms Ribton-Turner : Certainly. I have not seen families with multiple children with this disorder, but I have seen families where they have a child with this disorder where the women are continuing to drink at risky levels, and that is a concern. For me, even more concerning is the fact that we are seeing young women of childbearing age drinking at risky levels continuously.

Ms SMYTH: We have started the discussion about the consequences of stigmatising alcohol use particularly in pregnant women. I suppose I would be interested in your thoughts more broadly about the way that we approach the issue of stigma when we are trying to respond to what appear to be significant health concerns around the use of alcohol particularly during pregnancy but perhaps before it and after it. I wonder if you have any thoughts about that issue generally.

Dr Zirnsak : I think, as with any good public health program, there is a need to do the market research to measure is going to be implemented looking at how the target audience will respond to the health measure that is being delivered and therefore how effective it will be. Our concern in this has been a worry that the alcohol industry has looked to move on this under threat of, 'You have got two years to do something, otherwise we will intervene as government,' and whether the attempts to move therefore are to try to get away with doing the minimum without doing that solid research to back up whether this is an effective way to do the labelling, measuring what its impact is. Part of measuring the impact will be making sure that it effectively gets across the message without having negative reactions from those who receive it, negative reactions in a way that do not actually change behaviour but simply cause a person to feel stigmatised or to say, 'Well, that is not me—that does not apply to me.' But when we are talking about not drinking during pregnancy, I think that message needs to get across clearly. It is clearly the message that is coming through from health bodies about what is the safest thing to do and making sure that women are informed of that and therefore are making an informed choice.

CHAIR: And their partners?

Dr Zirnsak : Indeed, and evidence indicates that often it is that environment you are operating in, and your immediate partner and wider social circle, all saying what is acceptable.

CHAIR: Telling the kids not to smoke while you are smoking is always problematic.

Dr Zirnsak : Not very effective.

Ms SMYTH: At the other end, you have talked about instances where you have perhaps identified for someone that you suspect there may be an instance of FASD affecting their child. I imagine there is reluctance perhaps to accept that it is something that has come up as a result of behaviour during pregnancy. How do you deal with that?

Ms Ribton-Turner : There is huge guilt associated with that. I guess there is the combination of getting expert care, so referral into expert care around the disorder, but also continuing to support people and particularly providing them with the support that their role is still really important and that supporting that child for the next whatever years will make a real difference to the outcome for that child.

CHAIR: Thank you very much and thank you for the great work you are doing. When you sit here and give evidence in a nice dry, clinical way, we know that incredible hardship and tough tales are in the data you present. I do not envy your job, that's for sure. After 30 years of work in that area, I am sure with your connections to the church you know there is a special place in heaven for you—although we cannot, as a Commonwealth government, guarantee that!

Resolved (on motion by Ms Smyth):

That this committee authorises publication, including publication on the parliamentary database, of the transcript of the evidence given before it at public hearing this day.

CHAIR: I thank all the witnesses who appeared today and declare the hearing closed.

Committee adjourned at 12:43