Some research suggests parents with intellectual disabilities are over represented in child protection cases.
Airdate: 
Tuesday, April 23, 2013 - 20:30
Channel: 
SBS One

Susan finds it hard to multitask: she struggles to cook a meal and keep an eye on her toddler at the same time. She says she also finds it hard to make judgements when things aren’t black and white. Any 'grey’ areas can be hard.

It breaks her heart that she no longer has guardianship of her child. But she says that it’s for the best.

This week on Insight, a difficult conversation about how an intellectual disability may affect a parent’s capacity to raise a child.

We hear from parents and their children about what life is like at home. And we hear from child protection workers about the delicate process of making painstaking assessments and decisions about a parent’s abilities.

Presenter:
Jenny Brockie  
Producer: Elise Potaka  
Associate Producer: Saber Baluch 
 
Winner of the 2013 Yooralla Media Awards: Best TV (more than 10 minutes)

Web Extra

 

Growing up in the Strike family: Then and now

Robert Strike and Julie Loblinzk have mild intellectual disabilities and raised three children including Brad, now 20, and Cassandra, now 18. Insight first visited the family in 2002.

Play the videos to watch the family back then and today.

2002

2013


What is an intellectual disability?


It is estimated that between 2 to 3 per cent of the Australian population have an intellectual disability.

The medical model defines people with intellectual disability as those with:

• Significantly lower than average intellectual ability
• Difficulties with social and adaptive functioning.
• Impaired capacity to learn and communicate
• Difficulty in grasping abstract concepts such as handling complex tasks, and absorbing and assessing information at a ‘normal’ rate.

As well as the medical model above, there is also a “social model” that considers a person’s support needs. Read more about the difference between the two, as well other models, here.

The causes of intellectual disability are still unknown, but the most common causes are considered to be:

• genetic conditions
• issues during pregnancy such as smoking or use of drugs and alcohol
• problems at birth
• problems during early childhood

Source: Department of Health Victoria and the NSW Council for Intellectual Disability.


Breaking Point: What drives a parent to hand over their child to the state?

Last year, Insight produced an award-winning program on disability respite and relinquishment.

Watch
Breaking Point here.


Do you think intellectual disabilities affect a parent’s capacity to raise a child? Tell us your thoughts on Facebook, Twitter or our Your Say page.

Transcript

JENNY BROCKIE: Hi, I'm Jenny Brockie, welcome everybody. Susan, you have a daughter who we can't name for legal reasons. How old is she?

SUSAN: Four and a half.

JENNY BROCKIE: What's her personality like?

SUSAN: She's very kind natured and, wants to try and help like me and her grandmother with everything she possibly can.

JENNY BROCKIE: Is she a livewire, is she a bundle of energy?

SUSAN: Yes, yes, she is, so, yeah.

JENNY BROCKIE: And who does she live with?

SUSAN: She lives with her grandmother who's next to me, Jane, Jane has her guardianship but we've got this really excellent order that Jane has to keep both me and her father still in the picture and like talk to us.

JENNY BROCKIE: Still involved?

SUSAN: Yeah.

JENNY BROCKIE: So why couldn't you look after her full time?

SUSAN: Both of our disabilities implemented on us in different ways.

JENNY BROCKIE: This is your daughter's dad and you both have some intellectual disability?

SUSAN: Yes, both of us have intellectual. I have some physical, so there are quite a number of challenges that lay ahead of us.

JENNY BROCKIE: How did those things affect you day-to-day?

SUSAN: I don't always, can't see the greys and it's either got to be black and white.

JENNY BROCKIE: Right, so you don't see the shades in between?

SUSAN: No. So, but that was sort of very difficult as you could imagine with a young child, you have to sort of be able to see the grey things. So"¦.

JENNY BROCKIE: Can you give me an example of the kind of thing that was hard?

SUSAN: Like all the books said okay, she should be smiling at six months - I'd wait for six months and go 'she ain't smiling.’ It's like, you know"¦

JENNY BROCKIE: And you said you had physical issues as well.

SUSAN: I couldn't carry her and do something else, which was one of Child Protection's major concerns that I couldn't multi-task. So I couldn't do the cooking and let her play. I'd either, you know, and sort of watch her while doing the cooking as most parents can do. I would either have to do the cooking and let someone else watch her for me, or I watch her.

JENNY BROCKIE: And someone else does the cooking?

SUSAN: Yeah, which, you know, is not really that great. So, yeah.

JENNY BROCKIE: Did you plan to have kids?

SUSAN: We always did want kids. Don't get me wrong in saying this but we weren't exactly planning it for right there and then. We had"¦.

JENNY BROCKIE: So she was a bit of a surprise?

SUSAN: A very big surprise might I add, but a very enjoyable one at the same time.

JENNY BROCKIE: Yeah. And does she have disabilities?

SUSAN: No, no, thank God.

JENNY BROCKIE: Both of your parents had intellectual disabilities, didn’t they?

SUSAN: Yeah.

JENNY BROCKIE: What was that like for you growing up?

SUSAN: my mother was abusing me in my babyhood, so they gave me to my grandmother. But - and I don’t know whether or because it wasn’t practise or whatever happened – but there were no court orders done with me.

JENNY BROCKIE: So how did you grow up, where did you grow up?

SUSAN: I grew up with my grandmother until I was nine and a half and then my grandmother got sick and was forced to give me back to my parents. I have often said to people, you know - even if you see me act a smidgen like my mother – line me up and shoot me. That is how much I was prepared to try and learn and get guidance off certain people who knew my family.

JENNY BROCKIE: I guess the question I want to ask you is when you look back at that childhood, do you wish you were taken away from the family?

SUSAN: Well, in some ways I do, I mean I love my father very much but my father was disabled enough to not over power his wife and say you can’t do that to Susan, don’t do it to her and my mother, well goodness only knows.

JENNY BROCKIE: Okay. Jane, you're this little girl's grandmother, your son is her dad.

JANE LAMBLE: Mm-mmm.

JENNY BROCKIE: How did you first, how did you feel when you first found out that your son and Susan were having a baby?

JANE LAMBLE: Gobsmacked probably, would you say Suse?

SUSAN: Yeah, I was surprised that we were

JENNY BROCKIE: What went through your mind?

JANE LAMBLE: I thought, I thought they would be borderline as to whether they'd manage. I thought that there were going to be situations where they really had to be in them to see whether they could safely care for her or not. It really depended on each of their capacities to learn.

JENNY BROCKIE: And did you both talk about that at the time?

JANE LAMBLE: We didn't directly, but we involved some parenting education. The midwife was also coming out and teaching you how to bath the baby, do you remember that?

SUSAN: Yeah. Well I often felt like if we were able to start on this like as soon as we found out, rather than like, you know, like towards the end, then there may have been a bit more of a chance. I mean I'm not saying there would have been, there probably wouldn't have been because you know, me and my partner didn't stay together and it would"¦

JENNY BROCKIE: So that was factor too?

SUSAN: That was a very strong factor because we went to QEC with our little girl to see if they could get us over the line and it was like, yes, they could do it if they were both together.

JENNY BROCKIE: So when did child, when did Child Protection first get involved with your situation?

SUSAN: Ours was a pre-birth notification so I don't think any of us took that well. I don't know who took it the hardest. I especially found it hard because I come from a background where I was abused so I thought they were sort of judging me before I could even try. I mean let alone my daughter's still in my tummy, she's not even here, and here are these people knocking on my door saying you're not going to be able to parent. It's like excuse me.

JENNY BROCKIE: So how did you react then when all this was happening?

JANE LAMBLE: I guess in one way I wasn't surprised. I was surprised that a report had been made, but I wasn't surprised it was queried - I thought that was probably fair enough. But I felt very strongly that they deserved to have the opportunity to see whether they could care for her or not. That within intellectual disability it's not the same disorder for everybody, so Sue's got certain abilities, my son's got other abilities that Sue doesn't have and that my, my not disabled son and I went to see Child Protection and we argued quite strongly that they should have the opportunity in a safe environment to see how they went as parents.

JENNY BROCKIE: And did that happen?

JANE LAMBLE: And that's what happened, yeah.

JENNY BROCKIE: So you lived with Jane for a while?

JANE LAMBLE: Yes.

JENNY BROCKIE: And how was that, once the baby arrived, how was that looking after the baby?

SUSAN: I think was crazy for all of us and I think we, you know, especially for both me and my partner, we, you know, I thought maybe more me trying to, you know, make sure he was getting some turns at trying. He was like no, you just had a turn, you know, you just had a turn, you have a turn.

JENNY BROCKIE: What sort of things were hard, Sue?

SUSAN: I think the breast feeding for me was harder because I don't really like drinking water so the breast feeding was hard and so, but we got through to seven weeks, yeah, seven weeks which I thought was a plus.

JENNY BROCKIE: Pretty good.

SUSAN: But yeah, when she was seven weeks old we took her to the health sister which we had the same one there looking out for my daughter and disabilities and they said this particular weight and I was the same weight at an older age when I was removed from my parents. So I said right, that's it, that's it, breast milk not for her. I closed the book, I'm getting her on formula. Like, you know, no, I'm not going to even risk it.

JENNY BROCKIE: So you were really worried about her being taken away at that point?

SUSAN: Yeah, yeah.

JENNY BROCKIE: So how long did this go on for? How long did you try to look after her full time?

JANE LAMBLE: All of the looking after was done with 24/7.

JENNY BROCKIE: Support around?

JANE LAMBLE: Yes, either from me or from Sue's aunt and uncle and that would have gone till seven months.

SUSAN: Mm-mmm, roughly.

JENNY BROCKIE: And what was the tipping point then that meant that you stepped in Jane and became the primary care giver for the child?

JANE LAMBLE: The tipping point, well really there were two I think. One tipping point was that they didn't want to stay married - it was a pretty stressful, difficult situation - all of us living in a very small house and all of us adjusting to having a new born baby that needed six feeds a day in the early days. And I think the other tipping point was when they said well, we're going to take her home and so they called a cab and they took her back to their unit and I, I think we'd seen the maternal child health centre that day and you'd said to the sister you were going do that and she said well look guys, I'm sorry, I'll have to let Child Protection know.

JENNY BROCKIE: And how did you feel about that?

SUSAN: It was not practical to keep all of us in that one little house. I rang Child Protection and I said we need an answer, and like that was one time and they said yeah, yeah, we'll give you an answer. Next week or two weeks later I'm ringing up saying haven't got an answer yet - We need an answer, we need to be able to work out.

JENNY BROCKIE: Whether we're allowed to look after the child?

SUSAN: What is best for this child, if we can't look after her, we need to be able to work out, you know, there's any way that we can be involved still as some form of parents.

JENNY BROCKIE: When did you find out it was no - that she was going to Jane?

SUSAN: Well the next day Child Protection knocked on our door saying look, we've come to a decision and we're going to take her to the grandma, you know, we're taking her out of your care.

JENNY BROCKIE: Okay, we'll come back to your story a little bit later on. Julie, how many kids do you have?

JULIE LOBLINZK: Three.

JENNY BROCKIE: And how old are they?

JULIE LOBLINZK: Amanda is 21, Brad's 20.

JENNY BROCKIE: Brad's beside you here?

JULIE LOBLINZK: Yes, and Cassie's 17.

JENNY BROCKIE: And Cassie's over here?

JULIE LOBLINZK: Yes.

JENNY BROCKIE: And your ex-husband Robert is here as well?

JULIE LOBLINZK: Yes.

JENNY BROCKIE: Did you both plan to have kids?

JULIE LOBLINZK: Eventually, yes.

JENNY BROCKIE: Another accident?

JULIE LOBLINZK: Well, we were living apart and having a long distance relationship and that was, we were friends and I met Robert when he was doing training.

JENNY BROCKIE: Brad's squirming here, I think he knows where this is heading, this point, and I think he's hoping you're not going to go too far with it. Keep going.

JULIE LOBLINZK: Anyway, yeah, we decided I was going to move to Sydney and we were going, Robert and I were going to live together for a while, eventually get married and then have children, so.

JENNY BROCKIE: Yeah, and the having children happened a bit earlier than you expected?

JULIE LOBLINZK: Yes.

JENNY BROCKIE: Yes, how much earlier than you expected?

JULIE LOBLINZK: Way earlier. I didn't even move to Sydney first.

ROBERT STRIKE: That's right.

JENNY BROCKIE: Okay, how did your friends and family react when they found out that you were having a baby?

JULIE LOBLINZK: We had mixed reactions. We had family and friends that were supportive and we had family and friends that didn't want that to happen. And the first thing that was mentioned was you shouldn't have this baby.

JENNY BROCKIE: Because of?

JULIE LOBLINZK: We both have disabilities. Robert's got intellectual disability. At the time I was having a baby I had a learning disability and hearing and they thought that we would need a lot of support as well and needed to look at that. We didn't - it was like a child having a child.

JENNY BROCKIE: Insight actually filmed you eleven years ago, have a look at this.

STRIKE FAMILY VIDEO:

JULIE LOBLINZK STRIKE: You always have that fear about what is going to happen after the baby is born and I mean – you’ve watched movies and seen other people have kids taken off you and you often think - there’s lots of things that go through your head.

JENNY BROCKIE: What's it like looking back at that?

JULIE LOBLINZK: Oh, God.

JENNY BROCKIE: Cassandra is mortified.

JULIE LOBLINZK: She doesn't remember.

JENNY BROCKIE: She's hiding behind her hand. Brad, you were laughing, do you remember any of that?

BRAD STRIKE: I do actually, yes.

JENNY BROCKIE: What was it like growing up in this household?

BRAD STRIKE: It was kind of fun actually. I really enjoyed living with both my parents and my two sisters, we had a small house, there was pretty good, I reckon.

JENNY BROCKIE: What was it like for the two of you being parents of three children and quite close together too, what was that like raising three kids?

JULIE LOBLINZK: It was busy, yeah, hectic. We were really looking forward to being parents and finding out the things that you had to do. And it was really good that we had a lot of support.

JENNY BROCKIE: Family support?

JULIE LOBLINZK: Not just family, no.

ROBERT STRIKE: We had friends support.

JULIE LOBLINZK: We had friends support as well.

JENNY BROCKIE: What sorts of things were difficult?

JULIE LOBLINZK: The first thing that was difficult was the same as you, breast feeding. I thought that'd be something I could really learn but I struggled with that as well.

JENNY BROCKIE: You hit a bad patch after Cassie, your youngest was born, can you tell us a little about that?

JULIE LOBLINZK: After Cassie was born, I would have to say that was the hardest, I was in the hospital for two weeks on medication and not knowing what I was doing.

JENNY BROCKIE: Why were you on medication?

JULIE LOBLINZK: I had a difficult time, after Cassie was born I had my tubes tied and I was dealing with issues of what would happen if something happened to her and I was not able to have another child. And then when I got off what I was on it was hard to deal with her disability.

JENNY BROCKIE: And how did you move on from that?

JULIE LOBLINZK: Robert and I got a lot of support, Robert did a fair bit.

JENNY BROCKIE: What about when the kids were older, what sort of things did you find difficult as parents?

JULIE LOBLINZK: Trying to have a routine.

ROBERT STRIKE: I think it was difficult because I used to come home and say what"¦

JULIE LOBLINZK: "What have you done all day?"

ROBERT STRIKE: Yeah, I'm not thrilled. We have, I came home and there was a mess on the, and haven't you cleaned up today? She went yeah, I did. I said there's a mess. So"¦

JULIE LOBLINZK: Don't forget "what's for dinner?"

ROBERT STRIKE: Yeah.

JENNY BROCKIE: Okay, I want to hear what the kids think about this. Brad, when did you first realise that mum and dad were dealing with intellectual disabilities?

BRAD STRIKE: I'd have to say mid primary school, going into high school, there was, they told us a lot more but then as we were growing up they always told us though that we were kind of different and we were, we might act different. But yeah, they gave us some stuff but they didn't tell us everything yet. And yeah, as that went on we learnt more and more about what they actually did and everything.

JENNY BROCKIE: And what was that like for you?

BRAD STRIKE: I saw myself as anyone else really. I had two, a mother and a father with two loving sisters, we all cared for each other back then and, yeah, I enjoyed it.

JENNY BROCKIE: What about you Cassandra, what was it like for you?

CASSANDRA STRIKE: Um, I was adventurous, I was always - I have to say I was the worst out of all three of us because of my disability.

JENNY BROCKIE: And what is your disability?

CASSANDRA STRIKE: I have a bladder control problem and throughout school I was always teased and bullied and I just always got angry and I never wanted to go to school.

JENNY BROCKIE: Robert, how do you think your disabilities affected your parenting? Did they affect the way that you were a parent did you think, or are a parent?

ROBERT STRIKE: No, I don't think so. I think, because I wasn't brought up with parents, I was brought up in an institution and I don't think that it was a problem for me. But I, we had help from Julie's auntie and her mother and"¦

JULIE LOBLINZK: Don't forget Gwyneth behind you.

ROBERT STRIKE: And Gwyneth.

JENNY BROCKIE: And Gwyneth behind you. So Gwyneth, you bore witness to all this. Were you around from the beginning?

PROFESSOR GWYNNYTH LLEWELLYN, UNIVERSITY OF SYDNEY: Yes, I was around at the beginning, not so much lately so it's wonderful tonight to see everybody together. But yeah, there was a lot of talk in the early days.


ROBERT STRIKE: Yes.

JENNY BROCKIE: About what sorts of things?

PROFESSOR GWYNNYTH LLEWELLYN: Well like Julie said, I mean just things like what do you expect a child to do at what age and if they're not doing it, particularly if everybody's telling you the child should be doing this, well we know that's silly. If you've had a few children or you know a lot about children, you know there's a very big range. Some children can sit up by six months, some children don't sit up till eight or nine months and that's just fine. So we did a lot of talking about this.

JENNY BROCKIE: Lots of parents worry about this stuff. I mean this is just standard stuff that people worry about.

PROFESSOR GWYNNYTH LLEWELLYN: Standard stuff but it's difficult for people with an intellectual disability.

ROBERT STRIKE: It is.

PROFESSOR GWYNNYTH LLEWELLYN: And I think Susan's spoken to that as well. People expect that they know everything and that everything has to be perfect and they get judged much more than you or I would get judged.

MARGARET SPENCER, INTELLECTUAL DISABILITY RIGHTS SERVICE: I think one of the things, I've worked with Robert and Julie over the years, we do a lot of education together and I remember Robert, I asked you the question what was the hardest thing about parenting? What did you fear most or something like that, and your fear was that the kids would be taken away from you.

ROBERT STRIKE: Yes, that's right.

MARGARET SPENCER: And I think what I've struck in the parents that I work with, the thing is if their kids are not progressing as they should, they live with this fear that it's their fault that their kids aren't progressing. So if your child doesn't put on weight, then nobody's going to judge you as a non labelled parent because the child's not putting on weight. But for these parents the fear is actually of losing their children to the state rather than for most parents their greatest fear of losing their child is some God awful thing happening to their child and you know, catastrophe. For these parents it's that we'll slip up and our kids will be taken.

JENNY BROCKIE: What's that what you feared, Julie and Robert? Did you fear your children would be taken away?

ROBERT STRIKE: Yes.

JULIE LOBLINZK: Once we had them, yes.


JENNY BROCKIE: Tonight we're talking about what it's like to have intellectual disabilities and raise a child. There was a lot of chatter in the break, I noticed, a lot of people talking to one another. Anyone got any questions they want to ask anyone here.

WOMAN: A question for Susan, have you ever thought what would happen to your daughter if Jane wasn't there?

SUSAN: Um, well she either would have went to my other family which I was not a strong advocate of her going there, or she would have gone to foster care. But I was very determined and I had my heels kicked in and I quite often told Child Protection if they even thought of foster care, they'd have line me up and shoot me and I'll take her and I'll do the best job with her that I could. I was not prepared, if I could, you know, prevent it, to let my child go out of, out of the family, if I could help it.

JANE LAMBLE: I seem to remember you saying "foster care over my dead body" and I think we all felt that, didn't we?

SUSAN: Yeah.

JENNY BROCKIE: Anyone else?

MAREE WALK, CHIEF EXEC COMMUNITY SERVICES NSW: Just, I just wondered, some of the descriptions you sounded like you've really felt judged by people and I'm just wondering was there anything in particular that you felt judged by people just on the streets or anything like that in terms of, as a parent?

JULIE LOBLINZK: If I was out in the street I'd get come comments and if my - and it was really hard with my first one. If I took her shopping and, um, she cried or she wanted something and didn't, and got upset because she wouldn't get it, then yes, you would have people saying to you that you shouldn't like tap your child or you should stop your child from crying.

JENNY BROCKIE: What about you Brad and Cassandra, did you feel judged because you had parents who had intellectual disabilities?

BRAD STRIKE: I kind of did actually, not during my primary school but more towards high school, got more teasing and judging about who my parents were and I kind of got it for that. And then, I just didn't really see what was the big deal, my parents are my parents and that's all they'll ever be.

JENNY BROCKIE: And Cassandra you said that you had a bit a hard time at school too but that was also because of your own disabilities, yeah?

CASSANDRA STRIKE: Well, yeah, it was hard but my parents were always teased at school, at my school, because of their disability and I used to get into a lot of fights at school because people would pick on me because of it. And I actually lost my temper and I always used to attack the other students and frankly, mum and dad, was always at the school and always telling me that I was a bad girl for doing it and that, that they would take my toys off me because I was naughty and I would understand that because frankly, I knew what I was doing was wrong.

ROBERT STRIKE: Mandy and Brad used to walk with me down the street and Cassie and we used to go shopping and the young ones used to yell out "come on you retarded", call me all types of names and I said: "Have a nice day, I will have a good one today, bye", and then they anger. You could see the anger in their faces when they walk away.

JENNY BROCKIE: Margaret said the kids stick up for you though?

ROBERT STRIKE: Yes.

JENNY BROCKIE: What do they do?

ROBERT STRIKE: Oh Mandy used to get cranky and you could see the anger in her face.

JENNY BROCKIE: This is Mandy's the eldest who is not here tonight?

ROBERT STRIKE: Yes. And she said, I said ignore them but she used to say can't I bash them? I said no and that's how I dealt with it because it used to get me upset. But I thought no, I'm going to do something about it by talking to the kids about it and talking to them, what to do and how to do it.

MARGARET SPENCER: Robert has incredible wisdom, but when he told me the story about, one day just in passing when we were doing some education, he said to me oh, he said the kids stick up for me and I then explored this with him and he told me the story about how it's often groups of young teenage boys who will call them names on the railway station. And this was at a time when Robert had just been awarded the International Year of Disability Life Long Achievement Award for the nation, had been down to Canberra so it was a week after he'd been down to Canberra and got this award from the then Prime Minister Rudd.

So he's telling, telling me this story. In the backdrop he's actually been to Canberra, he's a spokesperson for people with disabilities, he's the father of three beautiful children, and I said to him: "So how often would that happen?" And he said: "Oh, a couple of times", and I said: "What, a couple of times a year?" He goes: "Oh no, a couple of times when I'm out." And that's what they're exposed to.

ROBERT STRIKE: Yes.

JENNY BROCKIE: Every time you're out?

ROBERT STRIKE: Yes.

JENNY BROCKIE: Every single time?

ROBERT STRIKE: Yes.

CASSANDRA STRIKE: Pretty much, that's why I was always in a fight.

ROBERT STRIKE: Yes.

JENNY BROCKIE: Robyn, you assess child protection cases in Victoria. How often do parents with intellectual disabilities come to your attention in Child Protection?

ROBYN MILLER, VIC DEPT OF HUMAN SERVICES: Jenny, reasonably often. It's something that we have been working with and our assessments are not focused on the disability, it's actually, when we work in Child Protection it's really getting to know the family and getting to know how is this child and how is this child developing and are they safe? It's not just looking at what's going wrong or where are the deficits, it's looking at the strengths, looking at what is going well. And you know, there will be parents listening tonight that would be envious of how your children love you and love each other.

JENNY BROCKIE: You're aware of Susan's case in Victoria because you're from Victoria. I just wonder if you can comment at all on that, on the circumstances, because I know Susan, you're now reasonably accepting of that decision, aren't you Susan?

SUSAN: Yes.

JENNY BROCKIE: Why are you accepting of it now do you think?

SUSAN: I think especially now as my child is four and a half, I sometimes very tired after even two hours and I think oh, my God how does Jane do it 24/7, you know.

JENNY BROCKIE: So how often do you see your daughter?

SUSAN: Once a week for two hours, so, yeah.

JENNY BROCKIE: Two hours a week though and you say that you do get exhausted after that, that you find that that's exhausting for you?

SUSAN: Yeah, yeah. Well depends on too what we do in that time. And I must say my, over at least last twelve months, my physical disability has worsened quite a lot more, I mean it devastates me that I have to sit there and I have to say: "Look, Chloe, I can't. I can't run with you, you show me how you can run." Or "No, mummy can't climb on that equipment because mummy's balance is not, you know, is off the radar", or I say, "not good so you go and show me how you climb on it and then jump down and"¦ "

JENNY BROCKIE: And Jane, Jane, what's it like for you?

JANE LAMBLE: It's exhausting. Our, our child doesn't need a lot of sleep, she's not by any means hyperactive, she's just got an awful lot of energy, hasn't she Sue?

SUSAN: Mm-mmm.

JANE LAMBLE: She's very bright. She, she's very active. It's, it's probably not what I'd planned to be doing at this stage of my life, but like a lot of life we don't write the script and there are tremendous amounts of just delight in rearing a small child.

JENNY BROCKIE: Robyn, in assessing Child Protection cases involving people with intellectual disabilities, why are they coming to your attention and how are they coming to your attention?

ROBYN MILLER: There's a greater chance if you have an intellectual disability of also having a mental health problem and sometimes that is exacerbated because there's a partner who had may be violent and controlling. So what we see a lot of within Child Protection is a picture where there's a range of issues and it's actually less about the intellectual disability because there's a tremendous range in capacity and it's not about judging somebody on that. It is about how is this child and how are all these other things impacting on the life of this child - Their safety, their stability and their development overall?

JENNY BROCKIE: So you're talking about a cascading set of issues in a way?

ROBYN MILLER: Absolutely.

JENNY BROCKIE: Are parents with intellectual disabilities over represented in Child Protection cases?

ROBYN MILLER: There's some research that would say that, yes, and"¦

JENNY BROCKIE: And why do you think that is, because of those kinds of issues you're talking about?

ROBYN MILLER: I think so and I think there's the whole social aspect too where people are often struggling because of the disability, then they may not be able to have the same job opportunities, there are money worries, there might be housing problems then. So sometimes, as I come back to saying, it's not about the disability per se, it's actually about other aspects and other things that might have happened along the way.

JENNY BROCKIE: Leah, you've looked into this, is there reliable information available about how the kids are faring when parents have intellectual disabilities?

ASSOCIATE PROFESSOR LEAH BROMFIELD, UNIVERSITY OF SOUTH AUSTRALIA : I've actually looked into not how the kids were faring but into the issue of parenting in the context of intellectual disability and Child Protection so I was trying to figure out is there reliable data about whether or not there's an over representation and if there is an over representation, well why? Are they over represented because of discrimination, are people reporting when they shouldn't? Are they over represented because there is a problem in parenting capacity or are they over represented because of other issues that, like social isolation and money worries and mental health illness and the cascading effects.

JENNY BROCKIE: And what did you find?

ASSOCIATE PROFESSOR LEAH BROMFIELD: It's all three. There's not, for any, it's funny we've been talking about the black and white. Child Protection is the art of the grey. You know, we, the work is all about sitting with uncertain decisions and unfortunately the research is also very grey as well. It's a very hard"¦

JENNY BROCKIE: Well we found that, trying to find out figures, trying to find out exactly what we're talking about here. I mean a lot of people pointed us to the fact there was an over representation but there's not a lot of data, is there?

ASSOCIATE PROFESSOR LEAH BROMFIELD: No, there's very little data. We, we don't actually know how many parents in Australia there are with an intellectual disability. If we don't know that, then we can't say whether there's an over representation or not.

JENNY BROCKIE: Gwyneth, you're disagreeing?

PROFESSOR GWYNNYTH LLEWELLYN: Yes, I don't quite agree with Leah on this one. There is actually quite good data from now quite a few countries, Australia to begin with in 2000, followed up by the UK, Sweden and most recently Canada, which shows the over representation to really a very large extent.

JENNY BROCKIE: But that data in Australia is what, 13 years old?

PROFESSOR GWYNNYTH LLEWELLYN: The data in Australia is but if I could just finish, what we're seeing is the replication of the same effect, which Leah spoke to, across each of these countries. So most recently in 2011 in Canada, out of 11,000 notifications for Child Protection concerns, there was around 10 percent of those concerns were around parents with intellectual disability.

JENNY BROCKIE: And what is it pointing to as the cause? Like what is the"¦

PROFESSOR GWYNNYTH LLEWELLYN: Exactly what Leah said that there are many reasons but we do know part the reasons, one of the reasons is that there is some discrimination, there are also the other reasons that Leah spoke to, which is that many people with intellectual disability in our community live in quite poor socio economic circumstances and regrettably the third reason, which was that often women with intellectual disability, in a sense are preyed on by not particularly desirable men. They're taken advantage of so that can be in - I think Robyn also said, abusive situations. There can be many other reasons but there is definitely over representation and a part of that has to do with more notifications than you would expect to see.

JENNY BROCKIE: Maree, you run Child Protection in New South Wales. Is intellectual disability seen as a risk factor for children by the authorities?

MAREE WALK: Yeah, well I'm glad we used a discrimination word because, I think tonight just hearing the absolute love in this family and, which is why I asked the question about people with an intellectual, parents with an intellectual disability feeling judged by the general population. So there is no doubt sometimes we do get reports from the general population of people making those sorts of judgments. In our act it's not a g rounds for reporting, nor should it be and we're really clear about that.

JENNY BROCKIE: So having a disability and having a child or being pregnant you're not mandatorily required to report that?

MAREE WALK: No, absolutely not.

JENNY BROCKIE: How do you assess when the interests of the child are not being met and you know, where is that line? How do you make that decision?

MAREE WALK: Well you make it, you certainly don't make it as one professional and I think examples we heard today was that the very careful use of other professionals who are engaged in families, and indeed other members of the family.

JENNY BROCKIE: How do you think the system's working at the moment around these issues? Margaret, you were wanting to jump in before, how do people think?

MARGARET SPENCER: If do you have an intellectual disability, as Gwyneth said, you know, there is a greater likelihood, particularly if you're a woman with intellectual disability, that you have experienced abuse, that you are, that you have experienced bullying, that you have experienced social isolation, that you are going to be socially disadvantaged.

JENNY BROCKIE: But there are, can I just cut in there though and say there are also, presumably, examples where it is in the child's best interests to be removed from families?

MARGARET SPENCER: Yes.

JENNY BROCKIE: Yeah?

MARGARET SPENCER: We all agree on that, we all agree.

JANE LAMBLE: But that doesn't have to be owing to an abusive situation. It can be, I believe, because of neglect and not deliberate neglect but neglect because one or other of the parents or both don't recognise a child's needs and aren't capable of learning it with all the love in the world. So I think we've got to be careful that we don't imply that it's always abuse.

PROFESSOR GWYNNYTH LLEWELLYN: Perhaps what we do know Jenny, and we do actually have a lot of evidence about this, that parents with intellectual disability, people who are higher functioning or people who don't have major, multiple disabilities, but people who are able to learn and many, many people, most people with intellectual disability can learn, as long as they're actually given the teaching and the support in evidence based ways that we know work. We do understand how to do that, we've understood how to do that for at least thirty years.

JENNY BROCKIE: So are those services around? Are they available?

PROFESSOR GWYNNYTH LLEWELLYN: There are some but nowhere near enough and I'm sure all my colleagues here would agree from Child Protection that there are just nowhere near the services that are required to provide level of support currently.

ROBYN MILLER: I just want to say we absolutely acknowledge in Victoria the need for different services to be set up that are more connected to one another where we actually cut through some of those silos and that family focus is really important. So we do need to be really mindful and what we know is that is that those programs that are actually more intense family support and home based that bring in specialist services into the home are really important and in Victoria that is what we have tried really hard to do.

JENNY BROCKIE: They are really expensive too aren’t they?

ROBYN MILLER: Yes, but if you are able to help that family to stay together, it is better for everybody and there is an economic argument there, Out of Home Care is very expensive but if that child is at risk, of course we have to do what is right for the child.

JENNY BROCKIE: Up the back, yes. John?

JOHN CARTER: Yes, you did touch on a point that there are different types or degrees of intellectual disability, a point that really needs to be stressed here. We've been talking practically here about mild intellectual disability in reality, perhaps very mild intellectual disability, but moderate, severe, profound intellectual disability, if there's a pregnancy there, the outcome has to be very different from what we've heard about tonight.

JENNY BROCKIE: Now you have your own experience of this as a parent?

JOHN CARTER: Yes, yes. Merren and I have a 31 year old moderately to severely intellectual disabled daughter many people came along and how many hours they came along to try and teach how to parent, it just would not happen. And this is one of the reasons why so many parents of moderate to severe intellectual disability are petrified of this situation and request some means of preventing pregnancies developing.

MERREN CARTER: Yes, I guess I'm thrilled with our young mothers here that are managing so well and, but our daughter is a very different, in a very different situation with her moderately severe intellectual disability. She, after two years of training, she is now able to catch the train to specific places that she's been taught. But she is on the train every day, we know she's very vulnerable, she's lovely, she's blond and very pretty and we know she is vulnerable, could be the target of abuse.

JENNY BROCKIE: So what have you done about that, how have you dealt with that?

MERREN CARTER: Well it was more, the most important thing was her menstrual management, the possibility of pregnancy was a secondary issue to us but because she's catching the train, if she can't manage her periods, then it was very important for her to, to retain her dignity and be able to have those periods managed in some other way. And we approached the Guardianship Tribunal and were given permission for a hysterectomy.

JENNY BROCKIE: And was she involved in making that decision?

MERREN CARTER: She was involved. They assessed her to see if she could make the decision on her own. That was the important thing in the beginning and they decided that she didn't have the capacity to make that decision, although if you ask her if she wants periods she'll say no. And do you want babies and she'll say no babies. So that's the extent of her understanding. So they deemed it that wasn't enough understanding to, for her to make her decision so we had a panel of three people and us and somebody representing her to go before the Tribunal to see what was in her best interests.

JENNY BROCKIE: Anyone want to react to that story? Okay, yes, quite that lot of hands going up here. Yes, yes, here first and then up the back? Yeah?

ASSOCIATE PROFESSOR LEAH BROMFIELD: I guess the thing, it's a comment really, I think what's coming out loud and clear is that there is no rule that every single case and every single family has to be judged on its context and circumstance. So we can't make blanket judgements that's parents with intellectual disability can't parent, but also we can't, we can't deny the fact that it's a vulnerability.

You asked earlier is it a risk factor and I mean risk factor, it's a horrible language because that gets us thinking straight away of Child Protection and making reports, but is it a vulnerability? The other thing we wouldn't want is the situation where we're so afraid of discrimination, where we see that there is a mum who's pregnant and has an intellectual disability that we don't offer anything.

JENNY BROCKIE: Tonight intellectual disability and parenting. Margaret, you're helping to foster your two foster daughters?

MARGARET SPENCER: Yes.

JENNY BROCKIE: Who have intellectual disabilities and they're parents?

MARGARET SPENCER: Well they both live independently and one has twin nine year olds, the other one has three little ones. Certainly she would agree with Julie that she's very busy with three, three children, 6, 4 and 2. And you know, I really, a lot of the things that we're talking about are things that I just think any active grandmother would do. You know, the things that we do are really, we're really a shoulder to cry on, a sounding board, I take telephone calls, I take - the kids come and have sleep overs, we do those types of things.

JENNY BROCKIE: What if a parent with an intellectual disability doesn't have a Margaret or a Gwyneth or a Jane, or anyone? What happens to those people Maree?

MAREE WALK: Well once again, often it's in the context of other things occurring. If they don't have the support or if they do end up, their children do end up coming into care, the first - the majority of kids who live in care live with kin, relatives. So that would be the first thing. So generally it would be the situation with Community Services would be trying to find any support network.

JENNY BROCKIE: Brad and Cassandra, do you want to have children?

BRAD STRIKE: I actually would like to one day, I wouldn’t mind having children, seeing what a good job my parents did, I’m hoping I can do just as good.

JENNY BROCKIE: Cassandra, what about you.

CASSANDRA STRIKE: Yeah, I'm planning on having, when I'm older I'm hoping to have at least four children of my own. I'm actually - I've already decided what I'm going to name them, surprisingly. Pretty much I'm naming one of my daughters, if I have a daughter it's going to be named after my big sister and my mum, hopefully, and if I have a son it will be definitely named after my brother and my dad, hopefully around the family. But, yeah.

JENNY BROCKIE: And what do you think it will be like to have a child?

CASSANDRA STRIKE: I think it would be fun because I'm really hoping to learn to experience what it's like to be a mother of my own and just look at mum's face when she hears that.

JENNY BROCKIE: Look at mum's face. How does mum feel about this?

JULIE LOBLINZK: Well I'm not ready yet.

JENNY BROCKIE: Seriously, what advice would you be giving them about having kids? What advice would you be giving Cassie?

JULIE LOBLINZK: I've already told her.

CASSANDRA STRIKE: Like a thousand times.

JULIE LOBLINZK: Last week.

CASSANDRA STRIKE: A thousand times.

JULIE LOBLINZK: Yeah, That, well, I think before she gets married is that she should be able to do something that she wants to do. And she's only young, and that when she wants to start a family I'll probably go a trip around Australia, and have a holiday and come back and probably see what I can do. So"¦

JENNY BROCKIE: Robert, what sort of advice would you be giving the kids about having kids of their own?

ROBERT STRIKE: They can look after themselves. No"¦.

BRAD STRIKE: Thanks dad.

JENNY BROCKIE: What would you tell them about parenthood, what that's like?

ROBERT STRIKE: Support them whatever they want. I think it's important to wait till you're old enough to know and go through some training on how to be a parent and use a doll or something to give them support in the way of how to look after that child and how to care for it. It's not easy. I know, I've been there, done that.

JENNY BROCKIE: Alright. We have to wrap it up here now. I want to thank you all for joining us here tonight, it's been a terrific conversation. Thank you very much for sharing your stories with us and you can keep that conversation going on-line.