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Education and Employment References Committee
Students with disability in the school system

AVERY, Mr Scott, Policy and Research Director, First Peoples Disability Network

GRIFFIS, Mr Damian, Chief Executive Officer, First Peoples Disability Network

IRVINE, Ms Sara, Communications Director, First Peoples Disability Network


CHAIR: I now welcome representatives of First Peoples Disability Network. Information on parliamentary privilege and the protection of witnesses and evidence has been provided to you. I now invite you to make a short opening statement, and at the conclusion of your remarks I will invite members of the committee to put questions to you.

Mr Avery : Firstly, I would like to commence by acknowledging the traditional owners of the land on which we meet today, the Kulin nation. We would like to thank the committee for inviting us to speak today. Disability has a history of being a neglected factor when developing education policy; more so with Aboriginal education policy where there is traditionally a low awareness of disability. We would expect that official data that you might see on the prevalence of disability in Aboriginal and Torres Strait Islander communities is vastly understated. The real issues and problems affecting children and their families are far greater than what would be officially stated. Recognition by the committee of the special issues facing an Aboriginal and Torres Strait Islander child with disability—we would see that as a step forward.

Just by way of background, the First Peoples Disability Network is a peak body established by and for Aboriginal and Torres Strait Islander peoples with disability. Our board is comprised entirely of Aboriginal and Torres Strait Islander people with disability, and this makes our organisation unique in Australia, if not the world. We give voice to first peoples with disability by basing our advocacy and policy on what people tell us—what we call the lived experience of disability—and it is these narratives of the lived experience that provide us with a deeper understanding of the impact of disability on an Aboriginal and Torres Strait Islander child's education.

Coming here today, we wanted to accentuate the positive. We would see education generally as one of the sectors which is ahead in taking active steps to raise awareness of disability. We would compare that to, say, the justice sector or the health sector, in our experience. One example that we are involved in is we have partnered with an organisation in the Positive Partnerships program, which goes out to schools and raises awareness of autism—but it is broader than that; it is also other learning impairments. Whilst there are good things happening, many of the programs in Aboriginal communities and Torres Strait Islander communities that we see are pilot programs or localised initiatives. Whilst they might have a very local benefit, the benefit is spread unevenly and it is usually the consequence of having a very passionate principal or senior school leader as their champion. But it does create issues around equity.

In addressing the systemic gaps we want to highlight a few points. Firstly, getting a child to school is obviously important, but it is their experience whilst at school that is what will keep them there. Whilst attendance is an obvious focus, it helps to dig a little deeper to understand what really matters. Whilst these things are harder to measure, they are the things that have greater and longer term impact.

Secondly, when thinking about what an inclusive education looks like for an Aboriginal or Torres Strait Islander child, you need to consider both the cultural and disability perspectives. These are different. Cultural inclusion is about understanding the cultural obligations that an Aboriginal or Torres Strait Islander child has with their community, whereas inclusiveness from a disability perspective is about recognising the child's specific learning needs related to that impairment and creating a positive learning environment for them. If you have both cultural and disability perspectives, you are setting them on the right path. If you have one but not the other, you are addressing some but you are nonetheless leaving in place substantial barriers to their learning. If you have neither, then you risk a progressive and total disengagement from education and set them on the sadly inevitable path away from education and towards things like the justice system, a life of limited employment prospects, low wealth and all the poor social outcomes associated with that.

Thirdly, we need to understand that disability and learning impairments occur on a spectrum, and it is often those with moderate disabilities who are at greatest risk. This is because their disability or learning need might not be immediately visible and therefore might not be identified or supported. We have heard examples where children who have hearing problems are being punished because of their impairments and because they are struggling to keep up, and when that happens a child gets branded. We call that the 'bad black kid syndrome', where they think that they are being naughty, but rather it is actually a physical effort that they cannot keep up with their schooling.

Fourthly, we just want to draw attention to particular issues around foetal alcohol spectrum disorders. It is very much a hidden disability. Whilst we know of lots of research happening around developing a diagnostic tool, this is going to take time to roll out. In the meantime, FASD is not recognised as a disability by the Commonwealth, and we are concerned that a generation of schoolchildren affected by FASD will miss out on having their needs supported while waiting for the medical research to catch up.

The fifth point we want to talk about is the transition between one phase of a child's development and the next. This is not well coordinated presently between government agencies, and I think this is an area where we see focused action could give great gains. We do not understand how difficult it is for various government agencies at various levels to work together, but that is where some big gains could be made. Children are particularly vulnerable moving from one part of the system to another. It is almost like they have to reset the clock. Unless there is an assertive family member or an advocate who can help navigate through the system—say, from early childhood into health, and from health into education—there could be a backward step at those times.

The final point I want to highlight is that this ultimately comes down to the rights of the child, and we see this as very different to the rights for the child, which is the adult politics associated around children's rights. It is about focusing on what the child's needs are.

In terms of making some recommendations that we would like to put forward as to how we might address these systemic gaps, the first point is we need to establish schemes which support learning disabilities across a spectrum and according to the children's needs. It is very different to the arbitrary lines that they might have saying, 'If you meet these criteria you qualify, but if you are just left of that you get nothing.' The second is that we ensure that the implementation of the recent National Aboriginal and Torres Strait Islander Education Strategy contains specific objectives around outcomes relating to disability. The third recommendation is that we include awareness raising on the prevalence and impact of disability in a national education strategy, building on some of the successes we have seen in these pilot programs. They are a starting point for a broader rollout of a national strategy.

The fourth is to support this awareness raising through the development of very practical guidelines which can be used by educators to help identify and detect disability as a factor in a child's education, and develop a supportive response as opposed to a disciplinary response. The fifth is to recognise foetal alcohol spectrum disorder as a disability and ensure that there are equitable learning supports for the child and the families who are affected. In other words, support the need not the label.

Finally, ensure that there is a coordinated effort and linkages between the various government initiatives and action plans, including the National Disability Strategy, the Aboriginal and Torres Strait Islander disability action plan, the National Aboriginal and Torres Strait Islander Education Strategy along with the Indigenous Advancement Strategy. They are some of the suggestions that we make. We have lots of examples that we can provide to illustrate some of these points. We are happy to take questions on that.

CHAIR: Thank you.

Senator O'NEILL: Can I take you to the offer of putting on the record some of the examples. I am interested in everything you have said. We just heard from Down Syndrome Australia and one of the questions I did not get to ask was: how do you go in terms of representing young Aboriginal people or older Aboriginal people in terms of schooling access and education? Have you some examples about Down syndrome and issues that are particular to Aboriginal and Torres Strait Islander families?

Mr Griffis : We have just recently had discussions with the Down Syndrome Association of the Northern Territory. They are just starting to do some outreach work in to remote communities there. One of the challenges is that we need to be very sensitive in the way we engage around Down syndrome. In some traditional communities, sometimes it is a very sensitive conversation to have. The way to do that most appropriately is for people who have personal experience around Down syndrome to do that. That is why we have been having a discussion with the NT Down syndrome association so they can go out into communities and share their personal experience around how they have provided support to their family member.

In some communities, it is sometimes viewed as a bad karma form of disability, if you like, and it can be that those families—

Senator O'NEILL: Because it is more visually apparent in a community than FASD, for example.

Mr Griffis : That is right. In some of our traditional communities, we have a way to go in explaining disability. It could be viewed as perhaps a bad karma experience or a way of explaining disability would be related to a view that perhaps something bad may have happened in the past. We have to be very sensitive around that. The best way to do that is to get organisations that have had a personal experience around supporting family members to do that. So the Down syndrome associations are very well placed to do that and we have been starting to partner with them. It is not unlike the way disabilities are framed in some other cultures around the world. There is a way to go in some communities in explaining this stuff. It is very sensitive.

Senator O'NEILL: In terms of Aboriginal and Torres Strait Islander data around Down syndrome and other disabilities, how accurate and robust is the data that you can access for the planning that you are asking for in terms of integration across multiple strategies? Where do people go to get the data and how sure can they be that they have accurate data?

Mr Griffis : We do not know prevalence data of disability in our communities. The 2011 census said that 50 per cent of our people have some form of disability or long-term health condition. It has always been believed, anecdotally, that the prevalence was about twice that of the rest of the Australian population. All our anecdotal evidence would suggest that that is true. In fact, this 50 per cent is considered to be a conservative figure because it does not have a measure on the prevalence of psychosocial disability or mental illness, for example, in our community. So disability is an untold story in many ways. There is very little research into this area.

If we were talking today about Aboriginal health, no problem; there would be a lot of research there. But it is an area that is not well understood. We need to urgently address this. It needs to be done in a very sensitive way because a lot of our families are very unlikely to come forward and necessarily say that they have a family member with a disability and there are a lot of reasons for that. One of the reasons is that in traditional language there was not a comparable word for disability. That is actually a wonderful thing in the sense that people are not labelled.

Sometimes parents are very reluctant to come forward because they do worry about being judged as bad parents, and we see the consequences play out all the time today. In Victoria, for example, we have more Aboriginal kids in out-of-home care than ever before and these sorts of risky engagements with authority are another reason why we do not have family members necessarily coming forward. So there is an urgent need to better understand the actual prevalence data across the broad spectrum of disability. Then we have new, emerging disability types like foetal alcohol spectrum disorder, which we do not really have a prevalence measure on either. Scott would certainly have some views on that.

Mr Avery : If you look at where the main data comes from, the main data sources around here might come from either the census data, the National Aboriginal and Torres Strait Islander Social Survey, and the Survey of Disability, Ageing and Carers. They all come up with very different answers because they have very different approaches. What is missing from that approach is that it starts off with the question: do you have a disability? So it requires someone to be aware that they have a disability and that they are comfortable enough in voluntarily disclosing that, that they have that, and, if so, what kind. So a lot of the prevalence data that you would be seeing from organisations like the Institute of Health and Welfare come from that medical model. It does not really capture that social aspect, that if there is a stigma attached—something like foetal alcohol spectrum disorder, which applies to the mother and the child—then they are very unlikely to voluntarily disclose that.

We would say that there is an under identification of disability or an undercount. You can see that just by comparing the results for those three main data sources around it. If you compare it to, say, the census data on how many Aboriginal people are in Australia, there is a lot of work around validating that census data, but there is not that kind of work around validating some of the data that is coming out around disability and getting some input around some of the social reasons why people might be doing it. We would say that anything you see coming out of the Australian Bureau Statistics, or originating from that, would be a vast understatement.

Senator O'NEILL: That makes me very frightened for the hopeful narrative that you gave at the end about the possible improvements if there was coordination across, and there are a number of strategies that have been advanced in recent times. Without the facts about what the needs are and where they are, that is going to make any movement forward extremely difficult. Do you have any suggestions to make me feel a bit more hopeful? How do you plan to address what I see as a big hole in getting a first step forward?

Mr Avery : Even though the data you do have is an understatement, it is nonetheless the best available data. I think we need to study that and understand that that data is a minimum and get something going. The problem is because there is a lack of evidence base there is very little action. So we are kind of in that holding pattern all the time: there is no evidence, we cannot do work; we cannot do the work, we cannot get the evidence. We are in that perpetual holding pattern.

Senator O'NEILL: Catch 22.

Mr Avery : What we do know is that there is a need. If I could give a very practical example of a school in Queensland, and again this is talking about the very passionate principal. The community said: 'We know our kids have a hearing problem. We don't know how many there are but there are enough to warrant something.' So they fought. They had to fight for acoustic tiles in their primary teaching schools. They said, 'We just have to create an environment.' You walk in and the teachers have the microphones. They said: 'We just have to take action on this. Eventually, they will come and they will do the assessments, but the need is so great that we have to do something now, otherwise these children that we are teaching are going to be in high school and we will lose a generation of our schoolkids.'

There are things that can be done to move this forward. That is what we are saying: identify some of those things. The school environment, I think, is a very good example where we know there is a vast need for hearing services now. We are hearing that the supply of people at the individual level who can actually diagnose and check this is at about two-thirds of the actual need. Some places are getting really good access and they are getting the hearing tests but other places are getting nothing. It would be good if there were guidelines on this for those primary schools in Aboriginal communities where we know the population statistics are saying there is a need, then we could start moving forward with some of these things rather than waiting for definitive facts and proof. But in the meantime we still need to do that research and work on that as well. That will come, but just understand that it will probably take some time. It does not mean that the need is going to go away; the need will get greater unless something is done now.

Senator O'NEILL: Our last witnesses spoke about the structural problems that people are overcoming by strong leadership, whether from a parent or from a leading teacher, principal or amazing community leader. What are your suggestions around something other than strong leadership in isolated contexts to create the change that is needed for the whole of the first peoples to be hopeful about moving forward?

Mr Griffis : Scott mentioned some national frameworks that I think we need to elevate. One of them is a national Aboriginal and Torres Strait Islander disability action plan, and that needs to have a strong focus on education.

Senator O'NEILL: Can you tell me what the status of that is?

Mr Griffis : The plan came out of the National Disability Strategy.

Senator O'NEILL: How old is that?

Mr Griffis : The process for that began in 2010. What is encouraging is that the National Disability Reform Council has identified two priorities, and one of those is Aboriginal and Torres Strait Islander people with disability. So, there is some momentum there, and that is another reason there has been a commitment by the Commonwealth to establish a national disability action plan. The issue will be that we may well write a whole lot of actions down, but it is actually about doing them, to be blunt. So, there is no doubt that there needs to be some investment on the part of the Commonwealth to address this issue, but we are strong advocates for what we call a whole-of-community response to disability. This is not about creating further dependency on government to come to the rescue, if you like. We need to use the resources that currently exist within community and find partners, which might well be private sector partners, to play a role within community so that communities themselves can lead the work on disability, which is the way things are done in other parts of the world. In income-poor settings, for example, there are well-established processes around community based rehabilitation, and education is a key part of that, where people themselves come together and identify some leaders and then build the infrastructure or seek the infrastructure they need in order to support themselves better.

So, I think there are some really positive initiatives coming up, but there is no doubt that we need some significant investment, and I would go back to the issue of a key starting point being that we actually do need to establish prevalence data straight up. That is a great big hole, as you have identified, Senator, and that is an absolutely urgent priority. We would have some strong advice about how you would get that data, though. It is going to have to be collected very, very sensitively and appropriately, but that is a critical starting point, no doubt. And then this action plan will draw out a whole lot of actions in a whole lot of areas; it will not be just about education. And there is no doubt that the commitment is starting to be there on the part of the Commonwealth, but we need to see some investment to address this. Otherwise, in 20 years time we are going to have an even more significant issue, when we start thinking of other new emerging disability types that have not really had a focus at all as yet.

Senator O'NEILL: Perhaps I could just go to your Strategic Directions document. You talk about education as one of the main priorities over the next five years. Do you have particular aims for education? And what are your plans about addressing that?

Mr Griffis : I might refer that to Scott, but one of the things I would add in relation to that is that when some of our young people turn up to school is maybe the first time there has been any interaction around disability, so this strong focus on early intervention is a key part of our education strategy.

Senator O'NEILL: So, preschool—early childhood.

Mr Griffis : Yes. If the young person or the parents have not themselves had an opportunity to progress though standard milestones—and that might simply be because they cannot access a health service to get checks done—it might be that turning up at school is the first time there has been any sort of recognition of a potential disability. We need to resource those educators better so that they are, for want of a better way of describing it, keeping an eye out for it. That is a critical first point of contact, we find. Then it is your opportunity to address and create a whole support structure around that young person and then hopefully they will progress through the education system in a really positive way. Where we see a huge failing is that that does not happen, largely—or, where it does happen, as you have alluded to, Senator, it happens in a localised way, and sometime beautifully. So, we need to use those examples, and they need to be framed nationally and be consistent approaches across the country. There are good examples where that does happen.

But the real risk we see—and this is a common experience for some of our young people—is that there is a trajectory that means they end up in the criminal justice system, and it is usually about not having an early intervention, not having their disability identified as early as possible. We describe it as the 'bad black kid' syndrome. Just to explain that: the way it usually plays out is that the kid might be in the back of the classroom, getting frustrated, getting angry, and may not feel that he has an opportunity to really participate. There are a whole lot of things going on. He gets suspended or expelled from school. He might start hanging around at the local shops or whatever. He is starting to be told to move on by the police, and away you go—a trajectory into juvenile justice et cetera. From our experience and from the stories we hear there is a disability in there: there is a hearing impairment or a vision impairment—maybe he cannot see the board—or he comes from a home where he does not get an awful lot of sleep, and there could be a whole lot of consequences around that.

So, that early intervention thing is a critical part of what we see. I do not want to labour the point too much, but we are embarking on explaining to authorities and developing a training program around how to identify and how to talk about disability from an Aboriginal perspective. Disability is personal for everybody, but in our communities it is a very challenging conversation to have sometimes, because of all the risks attached for families in putting their hand up—removal and all those sorts of things. Those stories are everywhere in our community still. So, we are very keen to provide some really practical ways of providing support to the education system, such as, 'If you come across a young child, this is maybe the way you have the conversation', and away you go.

Mr Avery : The way we would describe some of this stuff is that we see that there is this systemic bias. And it is not overt discrimination as such, or anything like that, but it is this subconscious thing, almost like a prejudice—'This is how we've always done it'—but it is a barrier that we have always had that we just carry forward. We actually use some of the narratives that we collect when we do this, and we put them in our research program, and we package them and analyse them and reflect them back. Often people say, 'Oh, we didn't know', because they have just assumed—they have gone straight to thinking it is a disciplinary problem, whereas it is actually a disability. The child might be at the front of the classroom, but by three o'clock the child is physically tired from having to hear all day, and they start becoming inattentive, and because it is not recognised and picked up they make their way to the back of the room and eventually they will be expelled. One of the guidelines might be to, rather than default to the disciplinary approach, do the due diligence first and ask, 'Is there an undetected disability that is having an impact?' before you go to that disciplinary approach.

These are some of the conversations we are starting to have, using the evidence that we get, and we reflect it back at the educators, and often they will say, 'We didn't know', and we find this in the health sector as well, where there is a systemic bias against people with disability and Aboriginal people, and they say, 'We thought it was attributable to their disability.' They do not know, but when you get these stories you can say, 'This is how your behaviours and practices are reflected back on the child.' It is actually about changing attitudes, about changing behaviours and also identifying where there are gaps in the system. Governments are organised around agencies and bureaucratic programs, but people do not live their lives that way.

Senator O'NEILL: Exactly.

Mr Avery : So you can actually see: 'Hang on—when you move from here to here, that is where there is currently a big gap', but it is also the point where you might actually do something. For example, you might be able to make a positive step by, instead of suspending or expelling a child, sending them off to an assessment as a default, or, when they come into contact with the criminal justice system, ensuring that there is some assessment.

Mr Avery : We see that there are some places that do it, but it is by no means uniform. The things that work need to be nationally adopted.

Senator SIEWERT: I cannot help but go to the issues around hearing.

Mr Avery : Yes, I talked about acoustic tiles.

Senator SIEWERT: I am very distressed to learn that, in fact, we do not seem to be making much progress in that area—that we are still at the point where it is not an obvious first thing that is happening with Aboriginal kids now in the classroom, particularly in regional and remote areas.

Mr Avery : It seems to go in fits and spurts. A few years back there was this purge, almost—doing lots and lots of hearing tests in primary health care. It was very good at picking them up but it just extended the waitlist to get specialist care. It did not actually treat the problem—we just knew the problem. But now we know that, because we have got this backlog of specialist care, we are falling behind in this. Again, this is around the uniformity. Someone like Australian Hearing might tell you, 'We cover 80 per cent of Aboriginal Australia.' They might be doing a good job, but we go to the places where the 20 per cent are and they are telling us that they are not getting the access to the services and the specialist care that is needed. It is by no means homogenous. I think that the need is very great, and it is not just in schools; it is in the justice sector and in early education.

I will give an example around how the system could be better aligned. We were talking about the Aboriginal and Torres Strait Islander Health Plan a couple of years ago at a place in South Australia. The first group of government bureaucrats were Commonwealth-based health bureaucrats, and they were telling us about their program. They said, 'It goes from zero to four years and this is what we do.' The next hub we went to were state-based education bureaucrats. They said, 'When they start school at the age of six, this is what they do.' The question was: what happens when they are five? The point is that it is a very complicated set-up in that you have got a Commonwealth health agency and a state education one. What is potentially getting picked up here—we think that with better information sharing at that level between the early childhood and the first day of school you could potentially have an early learning childhood plan on the first day of school ready to go, whereas with that other pathway they are probably at the age of nine before they are in front of a specialist at picking up their hearing. This is where I think some of these programs could address those gaps where people are falling through and starting again. I know it is difficult—I do not discount how difficult it is—but we think that is where very big gains can be made in some of those interagency kinds of projects. This is where we are hopeful that something like the Disability Action Plan, which is intended to bring some of the various government support agencies together, might—whether it is early childhood into the first day of school or, alternatively, out of school into employment—pick some of these transition phases where there is just nothing really supporting it.

Mr Griffis : One of the issues—we have talked about this before—is that with hearing impairment there is a highly medicalised approach. It may be that a young person may get their hearing impairment treated successfully but in fact they actually have a learning disability. That is where this falls down. I know that it is an issue that you are very aware of. You may well get effectively a tick for that: you have had your glue ear treated. But you may be nine years of age before it is picked up. You could conceivably be four or five years behind in terms of your schooling.

Senator SIEWERT: You are stuffed, basically.

Mr Griffis : That is it. Where is the support for the learning disability, effectively, that you now have?

Senator SIEWERT: One of the many things I am finding frustrating here is that it is not rocket science. It is well known now that we have got learning difficulties associated with glue ear, yet we still do not seem to be actioning it. You have got isolated cases where it is. We have been talking about sound fields but we still do not have comprehensive coverage of schools with sound fields, do we?

Mr Avery : And I am not aware that there is a national guideline that says, 'This needs to be the dBA rating for school classrooms.' You go to some which are quite difficult to hear in. They are just impossible. So it is very inconsistent. But some—and, again, this comes back to a school benefiting from a very strong, assertive principal or teacher—have to fight. It should not be like that.

Senator SIEWERT: That takes me to my next question. Earlier we were talking about how getting access to resources is often dependent on having a really good principal or teacher, and/or an assertive parent. If we go back to the issue you raised earlier about disability being really sensitive in Aboriginal communities, how are you finding parents and children being able to access resources for a child with a disability in the education system—that is, they have actually formally got some form of funding and package? I know it is a hard question because we do not have the prevalence data, but is there an understanding about whether they have—for example, there are a lot of people who do not have packages, but I suspect that there are a lot of Aboriginal kids that do not have them.

Mr Griffis : As Scott has alluded to and as we have talked about already, this is very hit and miss. Some families get good outcomes because of the way they can assert themselves. Fundamentally, we need a strong and robust Aboriginal disability advocacy program. There is an urgent need for that, too. Our organisation—not to make it about our organisation—is not a well-resourced organisation. We have half a dozen staff. Yet 50 per cent of our people are potential clients in many ways in terms of getting support. We need a strong and robust National Disability Advocacy Program so that we can go into bat for those families that do not have a way to do it for themselves. So, to be honest with you, it is probably that simple. That is why it does not happen. There are assertive  families that get really good outcomes for themselves. It is probably no different to the mainstream in some ways. Historically, there has been a really strong and fairly robust National Disability Advocacy Program, but it has not had a significant focus on our people at all. There is an urgent need for that. There are three or four pillars here, and that would be one of them. Research is another one. A meaningful National Disability Insurance Scheme for our people is another one. Then the other pillar we talk about is a strong and viable—and with potential into the future—Aboriginal owned and operated disability service system. So those four pillars, if you like, are what the Aboriginal and Torres Strait Islander Disability Action Plan needs to focus on—and probably yesterday! There is a critical need. We urgently need a workforce of disability advocates around the country.

CHAIR: We will just leave it there because we need to go to Senator McKenzie. I just have one more question. You have alluded to this a couple of times, Mr Avery, where you said that failure to identify disability often leads to a disciplinary response. I am happy to stand corrected on this but I have not heard that from non-Aboriginal and Torres Strait Islander parents in relation to their children. So I am just wondering if this is racism at play here—where a judgement is made that an Aboriginal child is just naughty. Is that at play here? As I said, it is not something that I have heard before. I am interested in why you think that response is made.

Mr Avery : I think it comes down to a lot of the subconscious stereotypes that people hold. We see it not just in education; we see it in health. We need to alert this to people. When we get this, we need to ask, 'Why is it the case? A lot of non-Aboriginal people speak with us. But what we do hear are things like what I heard when I was travelling in March. An Aboriginal child was suspended for not turning up to school. I have not got my head around that one yet—why you would actually do that kind of thing. In September a 15-year-old Aboriginal girl was telling us that she was subject to disciplinary problems essentially because she had a hearing problem and could not hear. We do not have the control of the other side—of non-Aboriginal students—to be able to make that definitive, but what we are seeing is that whether it is conscious or not it is a form of prejudice.

I think that when you are an Aboriginal person and have a disability, and you do not detect the disability, that subconscious bias is much stronger than you otherwise might give credit to. I think that is what we are trying to address around this awareness-raising—saying, 'Be alert to some of these things.' Again, it might not be the person with a severe impairment, because you might see my hearing aid or see the sign. It is those with moderate impairment, particularly undiagnosed, who are on that spectrum who we think are probably the ones who are actually greatest at risk.

Mr Griffis : There is sort of a spectrum here, I think. On one end you have wonderful principals and a great culture within the school. It is so different now in terms of Aboriginal histories talked about in school. So there is that end. Then we have the soft discrimination of low expectations—there is no doubt about that. People like Chris Sarra and others will explain that really well. I think that is still a reality in many of our schools, like 'The black kid won't quite be able to make it so we won't quite invest too hard' or patronising them. At the other end—the other extreme—we cannot get away from the fact that there are experiences of institutional racism. There is no doubt about it. So there is a broad range of experiences. But some of our kids in school definitely—no, not some. They absolutely experience racism, whether it be in the playground or the classroom. It is a truth. It is something we still have to continue to grapple with.

Mr Avery : That is the thing. It is racism. You are saying there are very overt forms, but there is also that systemic or institutional form. That is actually really tough to tackle.

Senator McKENZIE: You made comments around FASD. Is it recognised as a disability in any states in Australia?

Mr Griffis : We would not say that it is.

Senator McKENZIE: You would not say that it is?

Mr Griffis : Very recently there have been some positive developments, in the sense that—for example—the National Disability Insurance Agency is now being more considerate of FASD, if you like. But we are going to continue to agitate, to be honest with you, to make sure that it is very specifically named as a disability. Clearly, it is a disabling impairment. I think, broadly speaking, we have a long way to go on this issue.

One of the things we also do like to say is that this is not just an Aboriginal issue. I think the recent Four Corners program did a really good job of not just making it an Aboriginal issue. I think it is an emerging issue in the country across the board. But you could say that in some parts of our country that it disproportionately impacts some of our communities. In the Kimberley in Western Australia there have been some positive steps taken.

Senator McKENZIE: At a state level?

Mr Griffis : Yes, in terms of some research undertaken by people like the Telethon Kids Institute and others. They have engaged with some elders in the Kimberley, like June Oscar, who is very well known as a strong advocate in this space. I think the leadership in WA around that work needs to be replicated around the country. People like June Oscar and James Fitzpatrick, the paediatrician, and others up that way have developed a way to be responsive to FASD that is appropriate. I think that is where we have some leadership around it. We will continue to say that it has to be very explicitly recognised as a disability. We are starting to see some movement, I think, in that sense. There is some recognition that it is. It is not an arguable point, I would argue, because it is an impairment.

Senator McKENZIE: This space is traditionally a state space, so my question is: do any states recognise FASD as a disability formally?

Mr Griffis : I would say, formally, no. I would say it does not mean that you automatically get disability services. No state does.

Mr Avery : Our understanding is that it is recognised as a medical condition, but not as a disability. It is in the health system. So it is seen like diabetes, say, rather than like a cognitive impairment. That is how it is currently recognised. The implication of that is that parents and families cannot access disability supports at this stage.

CHAIR: Thanks very much for your insightful comments this morning. We appreciate you coming along and continuing with your great advocacy.