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

HARPER, Mrs Kerryn, Private capacity

HARPER, Reverend Paul Mannix, Private capacity

[10:47]

CHAIR: I now welcome Mr Paul Harper and Mrs Kerryn Harper. Would you like to make an introductory statement before we move to questions?

Rev. Harper : Thank you for the opportunity to speak today. The journey that Kerryn and I have had with Debbie over the past 17 years has been a significant one. We want to be of assistance in whatever way we can and today we will be focusing on the third of the terms of reference in relation to management issues, in this case to do with education.

We have been following the discussion on FASD and have noted with interest the wide-ranging issues and processes required to address the problem. Developing a suitable approach to the issues associated with FASD is obviously going to take a long time and even longer to implement. Our guess would be 10 years plus another five years to develop suitable education programs in schools for these children. Our concern is that another generation of children affected by FASD will have passed through our schooling system by that time.

Our main point to the committee is that there need not be any delay in developing suitable education packages for these children in schools. They can be developed concurrently with the rest of the research because there are suitably experienced people available to run them now, who could team up and run a pilot program over, say, the next two to three years with a fully-tested training package for parents and teachers in five years. This is our number one recommendation. However, we also have three other points which we think are critical for the successful delivery of education packages to children with an FASD. Firstly, in our opinion there needs to be a review of the way special-needs schools are run. Our experiences with two government schools have been starkly different. Ashwood School, on the one hand, does an excellent job, enabling Debbie to progress at a surprising rate. On the other hand, Ballarat Specialist School has an entirely different approach to education, which has stalled Debbie's progress. This should not be the case. Education strategies for children with disabilities should be standardised rather than letting schools do whatever they like. The schools which are delivering far superior outcomes should become that standard.

Secondly, if real advances are going to be made in schools with regard to learning about FASD and what is required to teach these children, then schools should be more directly instructed to listen to parents and carers. In all the current legislation and educational guidelines for schools in relation to children with disabilities, the message is quite clear: the parents should be regarded as the experts with their child, and educators should listen to what parents have to say about what works and what does not and be prepared to make changes in line with that advice. However, we have the terrible situation where one specialist school, at least, has been allowed to simply ignore what parents say, and nobody can make them listen. What we have experienced over the last four years has been grossly unfair to us and to Debbie. Ballarat Specialist School simply will not listen when it comes to effective teaching methods, because they think they are the only experts. While the situation remains, where it is quite possible for a relationship between parents and school authorities to become confrontational, our recommendation is that suitably trained advocates be made available to parents, who can hold schools accountable to their obligations. The committee should note that we are not the only parents who have had similar issues with a school that have never been resolved. This sort of thing seems to be happening around the country. There is even talk of a class action on behalf of children with an FASD, but what most often happens is that parents just give up, because to battle with a principal is exhausting stuff.

Thirdly, if children with an FASD are to be effectively taught in a specialist school, then the make-up of the school community needs to be assessed. A big part of the issue at Ballarat Specialist School is that it is the only special-needs school in the region, attempting to address the needs of children from the full spectrum of disabilities. Where you have severely disabled children, mildly disabled children and purely behaviourally challenged children all mixed together in each class—some with Down syndrome, some autistic, some deaf, some blind and some with FASD—it becomes impossible to implement truly specialist programs suitable for each disability. What happens is that education gets reduced to the lowest common denominator, whereas what happened at Ashwood involved a deliberate reduction in the range of intake, thus enabling a much more effective focus in the classroom. The bottom line is that Ballarat needs a second specialist school which can focus on the mid-range of disabilities. This is vital if kids with FASD are going to do any good in what is a very large region. There must be other communities around the country who need the same thing.

To finish, let me stress how these children do have the capacity to learn. They want to learn. They want to do well. They can advance instead of having to give up, if they are given the right environment and dedication to enable them to do so.

Mrs Harper : At the moment, within the education system there are learning strategies in place that have been deliberately put in place for children with autism, Down syndrome, hearing impairments and sight impairments. These are very specialised programs that have been developed specially for these children, addressing their needs and their special needs.

CHAIR: And none of their needs reflect FASD at all, so—

Mrs Harper : No. It is a very different thing with an FASD child, and there is no actual strategy that has been put in place for how to deal with these children. The biggest problem with that is that it is seen as being very politically incorrect to tell a mother that her child has FASD, because you might make mum feel very guilty if you do that. So there has been no strategy put in place to recognise the learning needs of these children and how these children develop with their learning, whereas they have done it with other programs.

CHAIR: We have had several witnesses come and talk about the challenges of caring, managing and helping FASD children, but only one of them has been a birth mother. That is just history, but I imagine it would be because of the challenge and, I am surmising, perhaps the guilt. It would be a complicated process. You are passionate and proud and appearing on the public record to talk about this, but I imagine it would be challenging to advocate about this.

Rev. Harper : We are so much in the minority. There may well be 50 children at any given specialist school with FASD but only one or two who are recognised as such.

CHAIR: When you say 'recognised' do you mean physically recognised?

Rev. Harper : Thoroughly recognised; but only one or two would be thoroughly recognised who are with foster parents or grandparents because of all the difficulties to do with identification, acceptance, stigma—all those sorts of things. What we are trying to say is that there are enough people around with enough experience to be able to start building suitable education packages.

Ms SMYTH: What are the features of a suitable education package in your view, based on your past experience?

Mrs Harper : Repetition. Believe it or not, the old rote system works really well with these children. We developed a rote system with Debbie.

Rev. Harper : It is the sorts of things that we outlined in our original submission—I think there were seven key points. Those key points came from our experience. There are eight key elements that have been published by groups like NOFASARD that are building on experience from Canada in particular and have very clear patterns. You are very much looking at an old style education. Part of the resistance from teachers today is that they simply do not want to use that sort of pattern, especially if it is only affecting one or two kids in the class when they have got a whole class to teach.

CHAIR: This is the classic intersection of special ed and general ed, I suppose. It is a debate that has been evolving over the last 50 years.

Rev. Harper : But what Ashwood School was able to do was to group together children of several abilities, regardless of what their particular disability was and actually—

CHAIR: Is Ashwood a special ed school?

Mrs Harper : It is a specialist school. It does not have any special developmental students. It only takes mid- to high-range special needs children.

Rev. Harper : They specifically will not take children with purely behavioural issues. They will only take children with recognised intellectual disabilities in the mid range. They were able to group children together, with Debbie included, and what they did was basically implement the old style education approach. It works brilliantly, not only for kids with FASD but for other children as well.

CHAIR: With a view to mainstreaming or one-day-a-week mainstreaming?

Mrs Harper : Yes, some mainstreaming.

Rev. Harper : Some of them did, but most of them will not.

CHAIR: Mainstreaming to the rest of society, at another campus or another school?

Mrs Harper : They would do shared education, with one or two days a week at another school.

CHAIR: That is in terms of socialising, social skills, connections, friends?

Mrs Harper : Yes, and some of the education things.

Rev. Harper : More importantly than that, they had a structured program from prep to leaving.

CHAIR: She is a 17-year-old?

Mrs Harper : She is 17 now.

Rev. Harper : She was there for five years; she was there in primary school.

CHAIR: You mentioned a Canadian process.

Rev. Harper : A large number of Canadian studies are to do with education and with memory training in particular. We mentioned a couple of those in our original submission which are absolutely brilliant. They confirm a lot of the stuff that we have learnt by our own experience and have been able to see put into practice in a school like Ashwood School.

Mrs Harper : The Canadian studies focus a lot on their indigenous communities, the Inuit communities, where foetal alcoholism is a problem.

Rev. Harper : They have been able to get critical numbers by focusing on that indigenous population.

CHAIR: Is that a community response by the first nation or a government response at the province level?

Mrs Harper : It is a government response, as far as we can tell. Our step in education for Debbie has been that we have actually gone through the process of arranging and paying for a private tutor once a week, with Kip McGrath tutoring in Ballarat, who do use very much that old system, and she recognised that that was what it was with Debbie. It has raised the education level. With Debbie you are looking at second generation foetal alcoholism. Debbie is not the first generation; Debbie is second generation. Her natural father has foetal alcoholism as well. So it is a generational thing. It is going to stop with Debbie, hopefully, and not lead to anything else.

CHAIR: Can you talk about your aspirations for Debbie? I realise that that is a very personal question.

Rev. Harper : We are working towards Debbie becoming—

Mrs Harper : Semi-independent, sort of.

Rev. Harper : Almost completely independent.

CHAIR: Financially independent? Will she be in the workforce?

Mrs Harper : Yes. That is what we are aiming for. That has been our last 12-month battle with the school. She has just completed work experience. She has physical as well as intellectual disabilities, which come from FASD. Previously when they were talking about the mice with the skull, that really struck us, because Debbie and her natural father have microcephaly—they have very small skulls from the foetal alcoholism. It affects her overall muscle tone as well. The children's hospital said to us once: 'It is insidious. We do not know enough about it. We cannot tell what will happen.' She has low muscle tone all over her body as well as her intellectual disabilities.

Rev. Harper : Also, she was declared to be a child that would never thrive. And that is so wrong.

Mrs Harper : That was what our thing was. Some of these children are just signed off to get into that whole welfare program and that welfare circle. To break that cycle is going to be great. Debbie has just completed one week's work experience with a Coles supermarket up in Ballarat, stacking shelves, cleaning things and having an absolute ball.

CHAIR: Coles have a particular commitment. Or is that just a local decision?

Rev. Harper : It would seem to be the case. They were the only ones that we could get an immediate yes from.

CHAIR: I know Coles have taken that view.

Mrs Harper : So they actually took on Debbie for a week. She worked half a day each day. We have a friend who works there casually, a uni student, and she said they said that she was fantastic. She could follow the instructions, she could do what she could do, then she travelled back to school by bus.

Rev. Harper : We have just had her registered with Finding Futures, where she will work two half days a week as part of her schooling as well.

CHAIR: Does Debbie like working and earning a dollar, being independent?

Mrs Harper : She loves it.

Rev. Harper : She loves the interaction.

CHAIR: So you see a trajectory there? You are not going to be here forever.

Mrs Harper : That was part of our thing. We are not going to be here forever and we had to ensure that Debbie could be as independent, even though our two older girls are more than happy to take her and care for her. Part of that independence is that, the day off that she is home from Kip McGrath, she might cook dinner that night with Paul. She does her washing and her cleaning. We are trying to make her as independent as we possibly can but safe. That is the hard part for us. We are looking down the track of a companion dog. With the low muscle tone, she has no depth of vision.

Rev. Harper : She does not have quickness of reaction to protect herself if she were attacked or anything like that.

CHAIR: We just talked about generations and decisions. Obviously Debbie does not have the capacity to make every decision an informed decision. In terms of future generations, have you thought about that? Is that a discussion or a conversation you have had?

Rev. Harper : I do not know exactly what you are asking.

CHAIR: In terms of—

Rev. Harper : Debbie having children?

CHAIR: Yes. You do not have to answer that; it is very personal. That is a confronting question for any parent.

Rev. Harper : These are difficult things. Going through the different stages of Debbie's development we have been thinking about things. There are a number of things that would make it advisable for Debbie not to have children, just for the child's safety. Like I said, there is her physical slowness of response sometimes.

Mrs Harper : The upper body strength would not be there to lift a child, to move around with a child.

Rev. Harper : At this point in time we would be saying to Debbie, 'Probably not a good idea for you to have children because you have got all these difficulties where you would not want your child to be at risk.' Having said that, however, if she was coupled with a person who was more able than her, it might be a possibility.

CHAIR: People who have children who cannot hold them in their arms—

Mrs Harper : That is right. She would have to be coupled with someone who was able to assist her.

Rev. Harper : With her general dexterity she has some limitations.

Mrs Harper : But she definitely aspires to be independent. Since she turned 16 she has been on the disability support pension, but she sees the older girls and sees that the idea is that you go to school, you go to uni, you get a job and you leave home. That is what, in her simplicity, she is looking at. They are the things that—

Rev. Harper : She has the desire to do things herself.

CHAIR: Can we leave Debbie and talk about the more general experience in terms of working in the high-rise public housing estates, particularly with people that have either been diagnosed with FASD or you suspect might have been—

Rev. Harper : Alcohol plays a big part of life in public housing.

Mrs Harper : It was very interesting to hear that Debbie's mother was one of many who had no prenatal care. They did not go anyway near a doctor until they were going to have the baby.

CHAIR: Could you tell us a bit more about that?

Mrs Harper : She was one of many mums who—

CHAIR: It was only 17 years ago, obviously.

Mrs Harper : She did not know she was pregnant, or did not reveal that she was pregnant, because one child had been removed previously—Debbie's half-sibling—due to neglect.

CHAIR: So that child was in the child protection system?

Mrs Harper : Yes. To avoid the system and to avoid being picked up in the housing commission flats a lot of the girls do not present themselves to the hospital until they are due to give birth. These are the ones who slip through the system, and there are a large number of them.

CHAIR: But once they enter the system, the health system then would be flagged, perhaps, DoCS—

Rev. Harper : Yes. Debbie was born on the kitchen floor.

Mrs Harper : Within the high-rise flats alcohol is there continuously. It is out in the suburbs just as much as in high-rises.

Rev. Harper : Alcohol abuse, cigarettes—we heard someone mention cigarette use as well—and gambling are widespread. The finances of whole families are very heavily impacted by all of those things.

CHAIR: We will just focus on alcohol.

Mrs Harper : Alcohol is very prevalent in the flats. It was there every single day. Alcohol was the main part of their social life, and there was no restraint. We are talking about pregnant girls from 14 up binge drinking.

Rev. Harper : You can still see it today. We have visited some supermarkets right on the doorstep of housing estates and seen whole families lined up drinking alcohol straight from the shop.

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

Mrs Harper : I think the main thing we want to get across is that these kids can learn.

CHAIR: Yes. Our focus has been on the time prior to birth, but I particularly appreciate your comments in terms of management and opportunities. I thank you for your work on a personal level with Debbie. It is going to be a lovely journey. She is very lucky to have two wonderful people like you caring for her.

Mrs Harper : She is a teenage girl—you could kill her sometimes, believe me!

CHAIR: You could say that about every kid.

Mrs Harper : Yes.

CHAIR: Good luck and thank you for taking the time to appear before us.