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Joint Standing Committee on the National Disability Insurance Scheme
04/07/2018
Market readiness for provision of services under the National Disability Insurance Scheme

LLEWELLYN, Professor Gwynnyth, Director, Centre for Disability Policy and Research, University of Sydney

[10:33]

CHAIR: I welcome Professor Gwynnyth Llewellyn from the Centre for Disability Policy and Research at the University of Sydney. Thank you for appearing before the committee today. I invite you to make a brief opening statement should you wish to do so.

Prof. Llewellyn : Good morning. I've been involved with children and young people with disability and their families for over 30 years. Recently I served as expert adviser on disability to the Royal Commission into Institutional Responses to Child Sexual Abuse and also published research for that commission with my colleagues Dr Sarah Wayland and Gabrielle Hindmarsh. I want to address two of the terms of reference of the committee. They are term (c), the development of the disability workforce to support the emerging market, and (h), which is the impact of the Quality and Safeguarding Framework.

I really only have two major points to make before turning to some recommendations about a way forward. My first major point is in relation to having an NDIS workforce that will be fit for purpose. The second major point refers quite directly to the National Quality and Safeguarding Framework.

With regard to the NDIS workforce fit for purpose, I'm concerned that if we ignore or neglect or overlook the very well-established association between quality and safety, we do so at our peril. Poor-quality supports result in unsafe practices, and at worst unsafe practices constitute maltreatment. You'll be aware from the work of the royal commission that internationally children and young people with disability are at three times higher risk of maltreatment than their non-disabled peers. We now have Australian data from linked administrative data in Western Australia 2017 that confirms that. On average children and young people with disability are at three times greater risk of maltreatment. Lest people be a little unclear about institutional settings, as many people seem to be about the royal commission, you'll know that of course institutional settings refer to any setting outside the family home. It doesn't mean institutions as we had in the past, although of course the media coverage primarily focused on large institutions. It's quite misleading.

Children with disability and abuse is not a trivial problem in Australia. We've been looking at this issue for over two decades. Back in 2000 we published research that showed that over a quarter of all children in care and protection matters in New South Wales were children with disability. The NSW Ombudsman in 2016 demonstrated similar findings. Other similar agencies to the Ombudsman around the country have done the same. Typically around 24 to 26 to 29 per cent of any group of children under any agency will have either a substantiated allegation of maltreatment, the broad spectrum of maltreatment, or will be involved in a reportable incident.

So I think we have a big question about whether we have the workforce yet which is required by the newly released code of conduct. That workforce, as it says in principle 3 of the code of conduct, needs to be able to provide supports and services in a safe and competent manner with care and skill. This will take significant investment and time to develop. We've heard Mr Head on that this morning and the acknowledgement of the time it will take.

We do need to understand a little better why this maltreatment of children and young people with disability continues in Australia. You'll note that I'm restricting my comments to children and young people with disability, which is where my specific expertise lies, but I know you're very familiar that these figures can be replicated in the adult population as well. The biggest issue for children and young people with disability is that they are with non-familial adults, typically in one-to-one contact, much more frequently than are their non-disabled peers. That's often away from public scrutiny. It's in situations, for example, for toileting and dressing and bathing, but in the new approach, and a welcomed approach, to participation in the community, it's also in one-to-one situations. For example, in a local park it can be at the back of the park or in public in the front of the park. We have to be aware that many of the supports that we put in place for children with disability actually isolate them from their non-disabled peers. If I give you the example of disability sports or specialist units in schools, these children and young people with disabilities then miss out on the incidental learning, which is how other kids learn about protective behaviours—what's okay, what's not okay, what's all right about touching and what isn't. Often we isolate our children and young people with disability from those opportunities.

We have workers who are very poorly trained in recognizing signs of maltreatment or children's behaviour which indicate maltreatment. So often we see that children and young people with disabilities are punished for what workers perceive as misdeeds, when really it is a cry for help. They are wanting to communicate with us. Our responsibility, our workforce's responsibility, is to learn to understand that. I regret to say that we still have a culture of caring for rather than respecting the rights of children and young people with disabilities. It positions them as passive and dependent and without agency. It continues to astonish me that all of our documents are policy frameworks. Our language is about persons with disabilities as if suddenly people with disabilities arrive as adults in our community. They have been children and young people, and they are neglected in our discourse. Experiences are absolutely overlooked.

We know from the commission that demand outstrips supply for workers and that management condones questionable practices. We know that children are allowed to go home with trusted staff in one-to-one situations. We know that parents may be very reluctant to complain for fear of retribution or losing support or previous poor experiences with current grievance procedures.

I want to move on to my second point, which is about the NDIS Quality and Safeguarding Framework. I'll give you a couple of examples of how children and young people with disability are missing from our national policy statements. You're aware of the National Framework for Protecting Australia's Children 2009-2020. Protecting children is everyone's business. There's only one mention of children with disability and it's in relation to supporting their parents. The NDIS Quality and Safeguarding Framework of December 2016 assumes people with disabilities are adults. There's bare mention of the particular needs and life experiences of children and young people. The NDIS code of conduct guidance for workers and providers, which we're all pleased to see arrive, does recognise culture and gender diversity but not age-related diversity. There's only one paragraph that addresses the age-related needs of children and young people with a disability. This lack of attention is really hard to understand, given that we know that there will be anticipated large numbers of children and young people with disability in the NDIS. These younger-age participants are actually central to realising the potential of the scheme. They're the scheme's future. Their needs, currently, in our policy frameworks and now some of our statements around quality and safeguarding, are actually missing. We have to have a stronger focus on these younger-age participants.

I want to turn to what I think we can do going forward. Obviously these children, Australia's children and young people with disabilities, deserve a fit-for-purpose, well-informed workforce and a fit-for-purpose oversight system that has to be able to ensure that they get supports that are safe, competent and delivered with care and skill. It requires, first of all, a quality safeguarding and independent oversight system that is child and young person focused. I can't state this strongly enough. In the research we and others have done and with what came out of the commission, in the public hearings and in the private hearings, the survivors of maltreatment with disability said—and they're adults now—'What we really needed was independent adults who would visit us, talk to us, watch out for us, listen to us.' It's much like we have with community visitors schemes and official visitors schemes for adults. We don't have those schemes for children and young people and we need them. We need a market that works in linked up ways with the multiple systems that children and young people interact with on a daily basis. Children and young people with disabilities are engaged in so many systems. I listened to the previous evidence and wondered: how are we going to get that linked up system which is able to see across the areas of these children's lives and provide safe environments for them?

We need data. We had a national agreement between all the states and territories in 2009 to insert a disability identifier in administrative datasets. I'm particularly interested in that but for this purpose, in the child protection datasets, because, if we don't have data about what is happening to these children at a national level, we can't even measure progress as to whether we're keeping them safer than we have in the past. The figures show that we have not been very good at keeping them safe.

We need a really strong national investment in this informed workforce because workers right now are not really informed about how to meet Australia's obligation under both conventions, including the Convention on the Rights of the Child. They need to be able to provide supports that recognise age diversity and that children are independent agents in their own right; they are not our chattels. They have a voice in other areas of life, including research. We even have in places in the world children's parliaments at local levels so children can express their ideas. We need to be more forward-thinking in how we understand and work with children with disabilities and young people in Australia.

What we don't have yet, and I'm certainly hoping that the new commission will work to achieve this, is what is happening in other places where we actually link workers' behaviours with the code of conduct—not just training on knowledge, skills and attitudes, which is what you normally hear. We have to be able to measure workers' behaviours. We have to be able to assess them and they have to be competency based standards so that we know that the workers working with children and young people with disabilities are competency based to provide quality supports with care and skill. We do have examples. The UK has gone this way. It's designed by Skills for Health in the UK. There's a care certificate linked intimately, inextricably, with the code of conduct. So it's not just a code of conduct and oversight in some way; it's actually measurement of workers' behaviours and assessment of workers' behaviours.

If we're going to have a ready market for the NDIS and be able to serve these children and young people with disability in the way they deserve, we need a child centred framework. It's missing at the moment from all the policy documents. It needs to identify what it means to be child-safe and it needs to identify that these children and young people are agents in their own lives. It needs to provide space for population approaches and targeted approaches and targeted interventions, but it always has to place the child and the young person at the centre, at the forefront of the conversations. We have to assist everybody. We have to assist the children, the young people, their families, the workers and the community more broadly. We need to respect the rights of these children and young people, as we've signed up to as a country. The royal commission has put forward the Child Safe Standards. They need to be embedded in the work of our new NDIS Quality and Safeguards Commission, as well as in the work of the NDIA. Thank you.

CHAIR: Thank you, Professor Llewellyn. I think you said there was a 2009 decision in relation to having disability identifiers in datasets. What has happened in relation to that?

Prof. Llewellyn : Nothing, pretty much, if I can put it like that. It was a decision taken after a lot of lobbying at state and national level. In Australia, we lead the world with our survey on disability, ageing and prevalence, but it's a particularly restricted way to understand prevalence. It's a good way, in many ways, but it can't tell you what's happening in the daily lives of children, young people and adults with disability. How you understand that is through administrative data: through the tax system, through the census, through social services and through care and protection datasets. So there are identifiers, and there have been for some time, for Aboriginal and Torres Strait Islander peoples, for example—as you would expect—but not for people with disabilities. A decision was taken, but it has not been implemented. The states and territories all signed up to it, but some states have been unable to carry out what they signed up to—and WHO, the World Health Organisation, has actually documented the lack of states' movement to having systems which will allow them to disaggregate their data by disability. So children and young people, in particular, remain hidden in the administrative systems. The data is not available.

Senator STEELE-JOHN: So it's not unwillingness. There's just not the technical ability in the systems used by the states. Is that what you are saying?

Prof. Llewellyn : No. I wouldn't say that at all.

Senator STEELE-JOHN: Is it a combination of both?

Prof. Llewellyn : We have technical ability in many computer systems. In fact, it would be hard to imagine a computer program where you couldn't have an identifier for disability. So, I'm sorry, I would have to say it has to be unwillingness to invest in that change.

CHAIR: Secondly, Professor Llewellyn, I think you were here for the entire evidence of the commission. You may recall that at the outset I asked Mr Head about this balance between its policing and educative functions. My observation of similar regulatory bodies, over time, is that the day-to-day demands on the body mean that all the emphasis goes onto the policing function and less is then required on the educative function. Do you have any observations about that, and, in particular, on how the educative function can be enhanced in the role of the commission?

Prof. Llewellyn : My first observation is that it's probably clear that I am not a young person, and that I've been working in this field for over 30 years, so I agree with your observation that the regulatory functions tend to take precedence. I've sat in other Senate inquiries and other inquiries nationally and at state level, where I've heard about, and I respect absolutely, the job of the executive coming into these new commissions. It's clearly a challenging task. But in an environment where regulation is absolutely required it's not surprising that it is front and centre. It's then difficult to see how to progress to the educative function, which is required to stop the vicious circle of needing to do so much follow-up of the regulatory function. It does require significant investment, but it requires a willingness of everybody, the commission and the providers, to work in that way. The gap, it seems to me, in the current arrangement is that the requirements for unregistered providers may mean that there's less willingness across the sector entirely. The registered providers are more likely to have self-interests that will engage them in the educative function. I'm not quite as convinced for unregistered providers.

CHAIR: Finally, you made reference to the UK certificate linked to the code of conduct. If I can play the devil's advocate, when you have a certificate which simply evaluates someone against a code of conduct, how do you know in practice that that actually leads to the better outcomes that you desire?

Prof. Llewellyn : I wasn't clear then; I'm sorry. There is a separate certificate—think of a certificate like a TAFE certificate—a vocational education certificate. It would have competency based on behaviour, not just knowledge and attitudes—competency based measurement of observations of behaviour in real-life settings.

CHAIR: I will interrupt, because this is the point I'm trying to get to. So, when you say that, does that mean that, in terms of the evaluation for an assessment of the person's competencies in order to attain the certificate, that is done over a period of time in the person's workplace?

Prof. Llewellyn : Yes. It's done as they do their training, because that shows that they can implement the requirements of the code of conduct. The seven elements of the new code of conduct are all perfectly reasonable; there's no criticism of them. But how do you assess that a person is actually carrying those out in practice? In other areas—let me take health, for example—how people who are health professionals carry out their behaviours is very well regulated. They are observed to be doing so and assessed and measured against a competency for that behaviour. We do not currently have that in the disability support workforce.

CHAIR: In the UK, have there been studies since this has been introduced to show that that is effective?

Prof. Llewellyn : Yes. I should say that those studies are underway. But there is some discussion that it has reduced the number of complaints. It's early days, but I'm sure you'll understand that, given the same issues around a marketplace, the UK were looking for a way to actually assess behavioural competencies of workers, not just that they had a piece of paper.

Senator CAROL BROWN: Were you a part of the consultations that Mr Head talked about that were held in May and June to talk about the rules and regulations?

Prof. Llewellyn : No. I'm aware of the consultations, but I wasn't present.

Senator CAROL BROWN: But you were here during the whole of the evidence that was provided by the NDIS Quality and Safeguards Commission. You've talked about the Child Safe Standards and some issues around the code of conduct and support worker training. What else is there? One of the concerns I have, of course, is: how is the NDIS Quality and Safeguarding Framework going to protect children and young people and people with disability who do not lodge a complaint? As you've said, there are plenty of instances where there is just one-on-one contact. But, even without that, complaints aren't lodged.

Prof. Llewellyn : The issue that's forefront in my mind is: how do we listen to and hear children and young people when we neglect to set up systems as adults which allow them to be heard? I just want to give you the example of a seven-year-old who was, for his best interests, for a short time in a care and protection facility. For that seven-year-old, there was no-one to talk to. His family were convinced it was in his best interests—they had been convinced by health professionals—and the power differential in that environment between the child and the adult left that child with few options in expressing how they felt, except in behaviours.

When you don't have a workforce that is trained to recognise behaviours then the child is seen as naughty, and that is what happened in this particular case. That instance is replicated over and over again in schools, not only in what you might think of as the more closed institutions, in juvenile justice and so on, but also wherever children with disability and young people are around adults who have control over their lives. So the notion of choice and control and participation, which we all value very dearly in relation to adults with disabilities, is not often thought about for children. What does that mean? How do we make it happen? What would the processes look like? In talking to children and young people with disability it's this notion of, 'An independent person who I can talk to who is not the teacher, who is not my mum or dad, who is not the direct support worker, but who is an oversight person who is independent and who I can talk to about what is happening to me.'

Senator CAROL BROWN: Have you had an opportunity to look at the rules that have been published?

Prof. Llewellyn : I can't pretend to know them all inside out, but, yes, I have read them all.

Senator CAROL BROWN: I know you've mentioned some of the things that you would like to see happen that you believe would improve the rules and regulations, but can you highlight for me what you would like to see happen? What would you like to see included in the rules? As Mr Head said, it's early days, but some of the processes that would kick in if, say, a complaint is made were unclear. Certainly, it was unclear to me around prevention, but you've talked about that. What would you like to see happen in terms of the rules and also the processes and systems that the commission implements?

Prof. Llewellyn : I think the very first thing we have to do is acknowledge that children and young people have different needs, particular needs, and that they need to be acknowledged. A rule that actually requires the commission to have a children and young people framework attached to their work is needed, something that actually says, 'This is a critical area that we need to pay attention to.' It's something that's been missing more broadly in the disability sector, which does not interact with the children's sector at all really. So a rule that starts that process is an opportunity, through the NDIS Quality and Safeguards Commission, to do that at a national level. We need to build on the work of the royal commission and the child safety standards so that they are embedded in all registered and unregistered providers and that the providers have to be able to demonstrate that they have child safe environments. These are not unreasonable steps.

I won't speak to the workforce again, because I've already spoken to that. I see that there's an opportunity for the commission to lead some innovative thinking at national level so that our next National Framework for Protecting Australia's Children strategy, due in 2021, actually does recognise that the significant proportion of children and young people in Australia who have a disability have a right to be included, that their voices and their needs are heard as children, not as the dependents of their families—noting that a large proportion of children with disability, beyond what you would expect, are in care and protection. I've already mentioned that Care Matters has up to 24 per cent of care cases involving children with disability. These are children who are not necessarily with their parents at all.

Senator STEELE-JOHN: I want to say, as a young person with a disability, my heart sings to hear most of what you've said, Professor, so thank you. I want to clarify one of those statistics: is that 24 per cent of child related care cases with disability nationally?

Prof. Llewellyn : No, that was New South Wales data.

Senator STEELE-JOHN: Is there a national figure?

Prof. Llewellyn : I wish there was, but there's no disability identifier.

Senator STEELE-JOHN: Yes, but in the state of New South Wales it's 24 per cent?

Prof. Llewellyn : Yes, but that was not because there was a disability identifier; it was simply literally going through—

Senator STEELE-JOHN: And looking?

Prof. Llewellyn : yes—Children's Court cases in New South Wales.

Senator STEELE-JOHN: Our focus here is market readiness, which includes the state of the market totally. I want to take you back to your observation in your opening statement that there are still cultures within the market currently, within the systems currently, that condone and precipitate unsafe practices—I think that was you're language.

Prof. Llewellyn : Yes.

Senator STEELE-JOHN: Would you be able to go into that for us in a little bit more detail?

Prof. Llewellyn : What we are able to understand from the work in the royal commission, because these practices are not typically what providers are going to talk about, is that with the demand for workers outstripping supply and the need for workers to work irregular shifts across particular time periods, management is often troubled by having enough workers to do what is required at the times required. So when there's a management issue such as that, it is probably not a very long step, as it were, to supporting practices that you can do in a time of a full workforce, with people ready to be deployed for all sorts of activities, including weekend activities and so on. There were instances—these are not historical instances; these are now—where management was condoning workers doing activities such as taking a child with disability for whom they were providing services to their own home.

Senator STEELE-JOHN: Back to the worker's home?

Prof. Llewellyn : Back to the worker's home, and this is condoned by management. That's one aspect. It's not quite in answer to your question, but may I just mention another?

Senator STEELE-JOHN: Of course.

Prof. Llewellyn : It's something that's been on my mind. Of course I fully support that children and young people with disabilities ought to be out in the community; they ought to be out in safe places in the community and know they will be safe, and their parents need to know they will be safe. However, the practice of one-on-one support with a young child or a young person with disability can lead to situations if there is no oversight in the community if it's outside of public scrutiny, outside of the public gaze if you like. It's a terrible term, but 'opportunistic maltreatment' can occur. Regrettably, I think, the public perception of maltreatment—particularly sexual maltreatment, but I'm talking more broadly here from our research—is that it's intentional. It isn't always intentional. It can be opportunistic. So I think this is one of the very strong reasons we need that child-safe approach, that child framework—when I say 'child' I include young people—so that we understand this situation and work and put processes in place so that it doesn't happen.

Senator STEELE-JOHN: When you're talking about that framework, do you envisage it as an addition to the current framework or a standalone framework in its own right?

Prof. Llewellyn : I think that would be something that the commission would have to consider very seriously. We're always in danger, if we label a particular area of disability as being very separate, that people will regard that as being so highly technical that they can't engage with it themselves. We need to engage with this at a community level.

Senator STEELE-JOHN: We certainly do.

Prof. Llewellyn : So I would think that that would be something that the commission would put a great deal of attention and thought to doing and would want to consult with others about whether that should be standalone or incorporated within their current work.

Senator STEELE-JOHN: One of the key messages you seem to have for us, Professor, is the need for the commission's work to be quite proactive, with your commentary around the need for that independent person who goes in and proactively seeks that from folks. Do you currently see the rules, regulations and statutory abilities of the commission as enabling them to perform that function? From what we just heard, it seemed to be quite complainant-driven rather than proactive.

Prof. Llewellyn : I think in theory the opportunity is there, and they will certainly have the data, I understand, to be able to determine what you might think of as shortfalls and, hopefully, also successes where they see good results. But one of the difficulties with working on, as it were, retrospective data is that at the same time you still have the problems happening.

Senator STEELE-JOHN: It's happened, and that's why there's data.

Prof. Llewellyn : Yes. If you look at other statutory agencies around the country, such as ombudsmen, human rights commissioners and so on and so forth, all of them in some way or other have a regulatory and a proactive or educative function. My experience, through both royal commission and the work that we've done over the years, is, as we mentioned earlier, that the educative function is not strong enough, not well enough embedded in the legislation or not given the due investment that's required to break this cycle of focus on regulation rather than on prevention. If I take the case of public health, for example, we talk about public health or population approaches. Across the board there ought to be that type of approach here. If we could successfully run quit smoking campaigns as well as a regulatory function around smoking, surely we can successfully educate the public to quit maltreating children and young people with disability as well as regulate to stop it. We must be capable of it. It's simply that investment and willingness has not been there, I think.

Senator STEELE-JOHN: Finally, Professor, you mentioned—I think it was key—the processes in the UK around behavioural based competency accreditation. Would you be able to give us the actual name of that certificate?

Prof. Llewellyn : Yes, I can provide all of that. My opening statement is a written statement and I'm happy to provide it. I will just give it to you correctly now. It's called the code of conduct for healthcare support workers and adult social care workers. It was developed by Skills for Health UK and it's linked to what is called the Care Certificate offered in vocational training institutions.

Senator STEELE-JOHN: Thank you very much. That's wonderful.

CHAIR: Professor Llewellyn, you very much for coming along and discussing these important matters with us this morning. We appreciate it.