Audio transcript: Children with disability: Inclusive practice and child-safe organisations

Return to CFCA webinar - 12 October 2017

Audio transcript (edited)


Good afternoon everyone and welcome to today's webinar, “Children with disability: Inclusive practice and child-safe organisations”. My name is Kat Goldsworthy and I'm a Senior Research Officer here at the Australian Institute of Family Studies. I'd like to begin by acknowledging the traditional custodians of the lands on which we meet. In Melbourne, the traditional custodians are the Wurundjeri people of the Kulin nation. I pay my respects to their elders past and present and to the elders from other communities who may be participating today.

This webinar will focus on developing practical strategies to create safe and inclusive environments for children with disability. To coincide with today's presentation, we have also published a new practitioner resource: Understanding safeguarding practices for children with disability when engaging with organisations, which explores how an understanding of abuse and neglect of children with disability can assist in establishing child safe organisations. This is now available on the CFCA website. Before we start though, some housekeeping details. One of the core functions of the CFCA information exchange is to share knowledge.

So I'd like to invite everyone to submit questions via the chat box at any time during this webinar.  We will respond to your questions at the end of the presentation.  We'd also like you to continue the conversation we begin here today.  To facilitate this, we've set up a forum on our website where you can discuss the ideas and issues raised, submit additional questions for our presenter and access related resources.  We will send you a link to the forum at the end of today's presentation.  As you leave the webinar a short survey will open in a new window. We would appreciate your feedback.

Please remember that this webinar is being recorded and the audio, transcript and slides will be made available on our website and YouTube channel soon.  It is now my pleasure to introduce today's presenter, Professor Gwynnyth Llewellyn.  Gwynnyth heads up the centre for disability research and policy.  The WHO Collaborating Centre on health, workforce development in rehabilitation and long-term care and is co-director of the Centre for Research Excellence in Disability and Health at the University of Sydney.  Her research in Australia focuses on parental disability and inequity, disadvantage and discrimination against children and young adult Australians with disability, and building community level disability inclusive emergency preparedness. Her work in the Asia-Pacific region addresses disability inclusive capacity building practices in rehabilitation and health and disability inclusive disaster risk management. Please join me in giving Professor Gwynnyth Llewellyn a very warm and virtual welcome.

Professor Llewellyn

Thank you and thank you Kat and welcome to everybody to this webinar today on children with disability - inclusive practices and child-safe organisations.  Today I want to talk to you about practical strategies, but we need to always start with, what do we think when we think about children with disability?  And the reason why this is so important, is because disability, like other types of diversity in our community, tend to raise particular images in our minds. And children with disability do evoke particular images, but unfortunately they're often inaccurate.  Let me just give you a few quick examples.

Often people think or talk about people with Down Syndrome as being happy go lucky, friendly, very affectionate - these are stereotypes.  And of course, people with Down Syndrome have the same range of personality characteristics as you find in everybody else in the community.  Another example, children with cerebral palsy, often they're portrayed particularly for advertising may I say, or marketing purposes as being struggling, intelligent, very kind, virtuous, many of those things - and I'm sure many of those children are.  But I'm sure there's grumpy children with cerebral palsy as well and not all need to struggle and I'll return to that point in a moment.  

And of course, children with autism which is now one of the most frequently occurring childhood disabilities and that's often portrayed particularly in the media as being associated with major behavioural challenges – that's also not accurate. But these are images that are portrayed in the community generally and often exacerbated by news reports and so on.  The next defining theme to get us started and to set the context, is that not all children who have an impairment or a health condition or a chronic illness are disabled.  What do I mean by that?

Being disabled, the way that we describe that in Australia based on the international classification of disability functioning and health, is that you are only disabled if there are barriers for you as a person with an impairment or a health condition or a chronic illness in interacting with your environment. Barriers stopping you accessing, being part of the environment very broadly. So, for example, you can have a child with mild cerebral palsy, who may experience no disability at all in their environments.  They play in the street with the other kids, they go to school, they don't need any special accommodations in school, they're sitting in a mainstream class.  

So we have to be careful that we don't label just because a child has a diagnosis of an impairment or a health condition or a chronic illness as having a disability.  Their environment is a critical factor.  And we'll talk more about that as we go through the webinar today.  But the last theme on this introductory slide, is to really set the scene for what the whole of this webinar is really about.  Children with disability are children first.  And you're probably thinking, well isn't Gwynnyth stating the obvious?  

But no, it's very hard for people to think about children with disability as a child first and that the disability does not define their life or their identity or even their family's view of the child.  Disability can be an identity that somebody holds onto.  A child may even hold onto that identity, but it doesn't necessarily define the child at all and we have to really change our views about disability to see the children as children first.  And of course, as soon as we see them as children first, children and young people going about their everyday lives, we of course acknowledge that they have the right to be protected in exactly the same ways as every other child or young person does.  

And we need to think about is there anything where they may need something a little extra because there are some differences or what we do in for example, creating a child-safe organisation for other children is also enough for children with disability, as long as we see them as children first.  Having said all that, we have to acknowledge that the everyday lives of children with disability do not mirror the everyday lives of other children in the community.  

And this is because, typically, children with disabilities spend much more time than other children with adults and in institutional contexts. Some children with disability of course, spend a great deal of time with non-familial adults, away from the public eye, or out in the community accompanied by an adult.  And children with disability can also be segregated into disability specialist settings or "included" and you notice I've got that in inverted commas in mainstream or [audio indistinct] settings and both those settings have very different organisational cultures.  

So, let us have a look at what that means in how we think about children with disability.  What it means is, that children with disability continue in our society to be over represented in what we know are typically unsafe environments.  So, children with disability were way over represented beyond their numbers that they exist in the population when you look at certain closed environments, such as juvenile justice or detention centres.  They're also over represented in foster care and in residential out of home care environments.  And they're also represented in most states and – over represented in those states and territories where we have reportable conduct matters. So, this is going to be an important issue in how we think about creating child-safe organisations in those closed and known to be unsafe environments, as well as how we think about creating safe ‘child-safe’ environments in other more open environments where children spend their days.

A little reminder here that quite a few of the systems that we put in place in our society to cater for in inverted commas, "the special needs" of children with disability can and do isolate them from other children.  For example, if a child is in a special education unit, they're with other children with special education needs and the numbers might be quite small compared to, for example, if they were in a mainstream class.  So there's like - it would be the teacher, a teacher's aide, say two adults to a small number of children, compared to in a regular class, one adult to a greater number of children.  And of course, where we might say, well they have special needs and they need more attention, but can you see how they're already isolated from other children.  

And particularly if the special unit which it often is, is located in a different part of the playground and the children don't mix at all during the school day.  What happens then, well a whole lot of things, but two are quite important for today.  One is they miss out on formal education about protective behaviours, because there isn't very much of that going on at all in special - specialised settings.  And they also miss out on that incidental learning about staying safe that children and young people share with each other often at recess or lunchtime or after school, when they're simply playing around with no other adults around.  

Often children with disabilities have very little time in their day when there's no adult in the same room with them.  The other difficulty is that both in our specialist disability and our mainstream inclusive services, there can still be quite a few attitudes that are really out of date towards children with disability.  A lot of over protection, a lot of belief that these children would not be either interested in sexuality or that other people would not be interested in the children as sexual beings, is quite clear these are out of date and inaccurate, but unfortunately those attitudes are still fairly common in systems which support children with disability.

So let's move on now to what we know about particularly child sexual abuse in institutional context with children with disabilities in Australia and I'm not going to talk about this report in detail because it's available in your list of resources and on the Royal Commission website.  But this particular report, was carried out last year for the Royal Commission.  And there was a very good reason that the Royal Commission wanted to know about children with disability, because they were very interested in all types of diversity amongst children and young people, but also to look for what can be done to think about where we've come from, as we can see the questions here and where we might go in the future.  

So there were three very specific questions:  How do we think about children with disability in Australia today?  How likely are children with disability to be in this case sexually abused? and how can we prevent sexual abuse of children with disability today and in the future?  And the answers to those questions, as I said, you'll find in the report and Kat has already mentioned that literally yesterday, through Child Family Community Australia there is a new resource out called Understanding safeguarding practices for children with disability when engaging with organisations.

And that was prepared by my colleagues, Sarah Wayland and Gabrielle Hymart who are co-authors on the report that I just mentioned.  When we think about the current discourses about disability in Australia and I've already mentioned a little bit about this, but we continue to think about children with disabilities as a special group, based a lot on the fact the institutional practices about children with disabilities is not that many years ago and that there's only a very relatively recent focus on individual rights and people and children with disability being out and about in the community.  

So while you've got this special group approach, then we tend to focus on the differences, rather than the similarities with other children.  We also tend to think that children with disability need special treatment, rather than think about protection and supports for children with disability are a community responsibility, as they are for other children and special groups tend to get segregated.  

And I've already mentioned in adult dominated settings rather than inclusive child-centred ones.  What are some of those institutional factors that still linger today that put children with disabilities in a more vulnerable position in relation to abuse?  We have these physically or ideologically separated services, specialist services, the power differential that exists between all adults and children, staff and children, is even more enhanced when children have a disability.

We often find cultures of caring for, rather than respecting the rights of children with disability.  Which means the children with disability can often be treated in quite infantile ways.  There's a great deal of challenge in getting staff and very good staff to work with children with disabilities and sometimes that leads other staff to overlook unacceptable behaviours or managers to overlook unacceptable behaviours, because they don't want to lose the staff they have. Staff, particularly in disability specialist services, are really quite poorly trained in understanding sexual abuse, in comparison to staff in mainstream children services.  

Parents we know in relation to the disability services in particular, can be quite reluctant to complain and particularly if services and supports are in short supply, because they don't want to lose what they've got – even though they may not be very happy with the support and services they've got.  And disability organisations, by their very nature, focussing on disability, in my experience tend to forget that there are children there who happen to have a disability, rather than they are disability that they’re serving, who happen to be children.  And there really is quite a difference in those two approaches.  

The other aspect that's not talked about very much, is that children with disability like all children, play - have play behaviours or may act out in different ways.  And sometimes that is over emphasised and seen as being a disaster amongst children with disability or under emphasised and seen as being, "Well that's just what [audio indistinct] disability with certain behaviours do." In other words, the focus on the disability takes away from [audio indistinct] how should these behaviours be regarded.

In the next slide and there's a lot of detail in the report as well as in the new paper, so I'll speak to this quite briefly.  But this slide really gives us the hard data about what we know about prevalence and risk of sexual abuse for children with disabilities and the very first thing we have to say is that we have no national data in Australia on this topic. So when we were answering our second question for the Royal Commission, we had to look to the international data and try to think about its applicability in Australia. 

Luckily, the World Health Organisation with some academics, had published a meta-analysis in the Lancet fairly recently, 2012, about violence against children with disability, including sexual abuse.  And the findings from this, demonstrate that in relation to sexual abuse, I'm not talking about the other types of maltreatment here, that a prevalence or frequency of that is about - between nine and 14 children in every hundred children with a disability are likely to experience sexual abuse.  Now we also talk as well, not just about prevalence but about risk.  And what risk means is “what is the risk of sexual violence to the population of children with disability as a whole?”. 

It doesn't mean the risk for each individual child, it means the risk for the population of children with a disability as a group.  And that risk, is almost three times that of non-disabled children.  In that study which is the - the most high quality and robust study anywhere in the world, because it brings the results of other studies together.  It was 2.88, so it's nearly three times as high as for other children.  And that's very important. So keep that in your mind as being “this is a problem, this is a big problem”.  And the stronger this finding was in relation to children with mental and intellectual impairment, with their relatively - relative risk, being 4.6 times higher than children without a disability.  

So I've titled the scale - this slide, “turning to the scale of the issue”, because this is not a trivial problem in Australia and we've known that for a long time.  In 2000, we reviewed court records, court files in New South Wales, the care and protection records and we found 24 per cent of all care matters about children with disability or a medical condition.  In 2016, New South Wales Ombudsman, found overall 29 per cent of reportable conduct matters involved children with disability.  In 2017, we got our first big study in Australia, and I'll talk about that in a moment on the next slide from Western Australia, and they discovered 29 per cent of substantiated allegations were about children with disability.

And sometimes I say a little bit tongue in cheek I suppose, but to make this quite simple, look at those figurers between 24 and 29 you're looking at around a quarter - one in four to one in five, depending whether it's for the 20 or the 25 per cent, a little higher at 29, around a quarter of what is happening in carer protection, is about children with disability.  This is not a trivial problem, because children with disability are only about - somewhere between 10 and 12 per cent of those populations.  

So, why is it that we've not really paid attention to this?  And today, in the webinar that's we're doing, paying attention.  That in itself is a very good first step.  Briefly this new Australian study published this year looked at administrative data but only in W.A.  And again, this resource is in your list of resources.  And they found very similar findings to the meta-analysis by Jones and colleagues that was published in the Lancet - this threefold increased risk. That seems then, that what we're looking at in Australia, from one state – and it was all those allegations for all children born in W.A. between 1990 and 2010 – that we've got similar figures in Australia, three times increased risk.

But I wanted you to notice the last line on this slide, which actually says, "In relation to severity of disability, there was a high risk, 2.73 higher likelihood of maltreatment allegation for children with borderline intellectual disability."  So in case you're thinking, well I can sort of imagine this, you know there are very disabled children and maybe they're very dependent and they're not able to say anything or to complain or, dare I say, fight back.  

But, the risk here is also for those children who have a borderline disability – a borderline intellectual disability.  So it does remind us again, that disability is diverse.  And as we move on to talk about prevention, we need to be thinking about these diverse groups.  Children with disability are children first and they show a great deal of diversity.  Before we move to the protection and the strategies and the child safe organisations which begin on the next slide, let's just look to what we do know in Australia which comes really from grey literature or case studies.  And you'll see that it's a combination, as it is for all children in protection matters, between child characteristics and the environmental context.  And here we see severity of disability has come up within the grey literature – not so much the research literature as I just mentioned, but in the grey literature and case studies.

Children requiring frequent and intimate personal care, children who can't communicate verbally or easily, children who may not develop awareness of personal boundaries,  children who may be less aware of the difference between right and wrong, and children who spend a lot of time in settings that expect compliance.  And you might think there are juvenile justice for example, detention centres and so on – closed institutions.  There's also environmental context and I'm sure that people who have joined us today, are interested in this because of the environment and thinking about the environment in which children with disabilities are spending their days.

Any segregated setting with limited external visibility by other adults or direct supervision, creates a potentially unsafe environment.  Being alone with an adult who's doing personal intimate care with you – or as we know from cases that came before this Royal Commission, being alone in school transport with the adult driving you to and from school, can be potentially unsafe situations.  We’ve talked before in this webinar about organisational culture and attitudes towards children with disability, when there's poor or absent leadership and governance, and closed institutional settings.

So what can we do to think about how do we make these organisations child safe?  And I wish I could say to you, in fact I certainly hope I can say to you within a few years, that we've got policy in Australia that specifically identifies this.  Because right now we don’t.  And they're the dot points on these slides which, I certainly hope you'll go back to later.  The national disability service standards do not address this.  The NDIS, quality and safeguarding framework which is very recent, it does not specify what is a child safe organisation for children with a disability.  

When the national child protection framework and the plans don't recognise the interaction with the environment, they place the risk only in the child.  And of course it's not only in the child.  We don't have any findings as I've already said; national findings, because the child protection minimum data there, doesn't include disability, because states and territories are not using a disability identifier so we would have good data.  That's the next point and it says it loud and clear.

And the last point, all of that sums to, we lack an evidence base, not only on the prevalence and risk of children with disability of all types of abuse, including sexual abuse, we also lack an evidence base which would give us benchmarking data that, once we put these policies and practices about child safe organisations into place, we'd be able to see whether our policies and practices were effective or not.  

So, what do we know about prevention?  Again, we don't have data in Australia.  We have quite a focus on safeguards for adults with disability.  It is not complemented by a similar focus for children.  There is literature and it's primarily discussion and recommendations, but we don't have evidence.  And I know as people who have joined today's webinar, you will be people interested in evidence based practice.  Australian Institute of Family Studies, Child Family Community Australia, everybody is focussed on evidence based practice.  I wish I could be giving you today, evidence based strategies.

What I can do is give you the best evidence based strategies that we know internationally, but not in our context.  There will be applicability but our context, particularly now with the implementation of the National Disability Insurance Scheme, means that we need to know, for our context, what will work best to keep children with disabilities safe in Australia.

So, where to from here?  We're clearly looking for a child centre framework and I do hope that all of you will always now think about children with disabilities from a child first approach.  Allowing children with disabilities to be thought of as active agents in their own lives – not just passive in relation to adults and other children.  We have to look for effective population approaches that work for all children, and then think about the targeted interventions that will place children with disabilities at the centre of conversation.  Identifying ways to assist the children, the families, the staff and the organisations, s o we can implement prevention strategies to minimise risk.

I've mentioned children with disability as children first, agent's in their own right.  Child safe organisations now, we talk about that as a population health approach – that it's for everybody – and we know, as point three says, "Because children with disabilities are at heightened risk of all types of maltreatment, nearly three times heightened risk of sexual abuse, we have to have some targeted strategies that are needed alongside our population approach to child safe organisations. 

They have rights and they have a voice.  It's our responsibility to listen to their voices and to implement their rights.  And I know that participants today will be well aware of that through the United Nations Convention on the Rights of the Child and the United Nations convention on the Rights of Persons with Disabilities.  So as soon as we have child safe organisations that are safe for all children, they will be a long way towards being safe for children with disability too.

But what are some of the particularities?  Children with disabilities of course need to be taught protected behaviours, just as all children do.  But, they will need to be taught in appropriate ways, using materials that are accessible, culturally appropriate and with diverse formats.  And I've listed some of those potential formats in point one.

We need to work out, think about and provide that opportunity for informal learning, peer to peer about staying safe.  And some of you will be aware that when Tim Moore talks about the research they did, talking to young people in residential environments, they were concerned – again there were about 24 per cent of those young people with a disability.  But the children without disabilities and the young people were concerned, more concerned about their peers with disabilities than themselves.  And they had very good ways of sharing how they stay safe.

So why not?  Children without disabilities sharing with children with disabilities, what they know about staying safe.  That was my third point on the slide.  And the last one, is that all adults need to be trained to recognise the signs of abuse in children with disability.  And the case studies from the Royal Commission really make sad and sorry reading here.  Because adults did not recognise, I beg your pardon, staff did not recognise, parents did, but staff did not recognise what were clearly changes in behaviour of these young people who had actually been sexually abused. They were overlooked.

How do families, how can we support families to also respond to the particularities of children with disabilities?  Families do also need targeted information about the increased risk of maltreatment, grooming.  How grooming happens in relation to the specific vulnerabilities of children with disability.  And, how to identify signs of sexual abuse.  And on your reference list, there are two publications from the government of South Australia which speak very specifically to families in this way.

But families also need some targeted information and probably some training about their rights to speak out about concerns, and who they can turn to, if staff are dismissive of their concerns or if they fear reprisals.  Families also need targeted information about how staff in mainstream and disability-specific organisations may still be continuing to view their children through a disabled lens, and not seeing them as children first who need to be protected in the same way as other children.

They also need targeted training opportunities for how to talk to their children about protective behaviours.  And that's particularly so, when their children receive – or their child receives intimate personal care.  And targeted information about, what to find out about before agreeing to a particular organisation or an individual working with their child or supporting their child.  We know that Working With Children Checks, are not enough and parents need to have – and again the South Australian materials deal with this, “what should you be asking? What should you be looking for before you decide that that's an organisation or an individual who can work with your child?” For staff and managers, clearly changing attitudes to understand and respect children with disabilities as children first has to be the first step here.  Because until there's that shift, that paradigm shift, it is very difficult for all of the other parts to follow.  Staff also have to be trained in how to listen.  How to truly listen to children with disability.  Because their voices can come in very many different forms.  They're not going to talk out necessarily in the same way other children do.

Obviously, all personnel have to be educated on the increased risk of maltreatment for children with a disability, and the situation's and environments in which this is likely to occur - and relative to that diversity in disability that I talked about before. It's also important that all personnel are educated on how to identify and respond to signs of behavioural or emotional distress that may indicate sexual abuse, and there were just a couple of examples on the previous slide.

And educating all the personnel in organisations on this expanded power differential that exists between adults and children with a disability, in closed institutions that is of course, so we've seen it in detention centres, we see it in juvenile justice, but when children also have a disability and may be unable to speak out, or the way in which they speak out is ignored or repressed by staff, then there's very, very little chance of children being protected, and staff have to know how to monitor their own behaviours in using power, as well as monitoring those of their colleagues and speaking out when what their colleagues are doing is also wrong.

And of course, people need to be rewarded for child safe practices.  So I'm moving now, to our very last slide in this four parts of children, prevention strategies for children, for families, for staff and now for organisations.  And you won't be surprised that what's on this slide mirrors what I've been saying in the other three parts.  Best practice standards for child safe organisations must include standards that are around the particularities relevant to the children with disability who are in those organisations.  It is not enough to have the population health approach without the targeted approach as well.

There have to be monitoring oversight and regulation requirements that address the specific situation of children with disability.  And they have to be incorporated into all policies and procedures.  That would be difficult now, because for example the NDA’s quality and safeguarding framework does not specifically address this for children with disability.  So I would hope that as attendees to a webinar like this, that you would be advocating too, to see practical policies and procedures that can be incorporated into your organisations. Organisations have to ensure a culture at every level where there's ongoing and – initial and ongoing training.  And that it's competency and behaviourally based – not just awareness raising, but that the people have knowledge, skills and attitudes that will keep children with disabilities safe.  And the last point is communities of practice.  For those of you who come from a child protection area and the child and family area, these are very common.  

Communities of practice where people share ideas, knowledge and so on. These are not common in the disability field they are more common when we're talking about adults with disability, but not children with disability and I believe that would be a very big addition to this field – to have this community of practice of shared ideas.  

So we're at the end of my comments today and I know there'll be questions.  But I just wanted to leave you with my vision, that when children with disability are regarded as equal, as children first, they'll be heard no matter what form their voice takes.  That the families will be really confident to speak out and to have choices about which people and what organisations actually spend time with their children. 

And the children with disability themselves will be supported to learn those protective behaviours with their non-disabled peers but providing extra support if they need it, and particular forms of learning and education if that's what they need.  And there's many others, but those three would be a very good start.  We now know, not only around the world but from the Western Australia study, that there is nearly three times the increased risk of maltreatment for children with disability. 

We have to do better by these children.  And when all children with disability are regarded as equal, this would no longer be the case.  We would all be part of reducing this substantially increased risk of maltreatment of this quite substantial group of children in our community.  Thank you very much.




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