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Joint Standing Committee on the National Disability Insurance Scheme
14/03/2018
Market readiness for provision of services under the National Disability Insurance Scheme

CLARK, Mrs Bronwyn, Project Officer, Aboriginal & Torres Strait Islander Disability Network of Queensland

RENTON, Mrs Robyn, Manager, Rights in Action

ROWE, Mr Geoff, Chief Executive Officer, Aged and Disability Advocacy Australia (host organisation for Aboriginal & Torres Strait Islander Disability Network of Queensland)

[11:51]

CHAIR: Welcome. Thank you for coming along to participate today. I invite you to make a brief opening statement.

Mr Rowe : Thank you for the invitation to participate in the hearing today. Aged and Disability Advocacy Australia host the Aboriginal & Torres Strait Islander Disability Network of Queensland and have done now for about three years. We were asked to take on the role of host given that we are a state-wide service. We have a number of Indigenous staff and dedicated Indigenous advocates. At the moment, we have about 800 people who are members of the network right across Queensland. The message that we are hearing from them regarding the NDIS is that they are confused, uninformed and disconnected—and I'm not quite sure what other adjectives I should use. When we talk to Indigenous service providers, they are frustrated. They feel that they are left out. When we talk to communities, they are unprepared for the NDIS. When we talk about Queensland and the NDIS—at the risk of sounding parochial—there is a significant difference in the rollout of the NDIS in Queensland compared to other states and territories, in that, prior to the NDIS, some 45,000 Queensland received a disability service, and it is expected that that number will double, to just over 90,000 people. So we have a very large number of new people to the scheme. We've got people who don't have connections to the disability community, to the disability service providers, and the safeguards to transition people who are currently receiving support are not there also. When we talk about Aboriginal and Torres Strait Islander people with a disability, we know that they are very poorly represented within the 45,000 people that are currently receiving a service. We know that they comprise three per cent of the population; we believe that they should comprise about five to six per cent of the NDIS population, given their increased incidence of disability within that community. We are probably talking about lots of people who are eligible, who don't currently get a service and who don't know how to access a service. Perhaps I can talk some more as we go along.

Mrs Clark : I am based in Geebung in Brisbane. I'd like to take a moment to acknowledge our traditional land owners on the land that we meet on today, and also pay respect to my elders past, present and emerging. I have been in my role for nearly six months and have been on the ground having community meetings—or, as we're calling them, yarning groups—where it is a culturally safe place for people to come, get some more information, understand, and also talk about what's not working. Then we are the platform to raise a voice for our people.

Mrs Renton : Rights in Action is an independent advocacy organisation for people with disabilities. We are very small organisation that covers an area from Babinda up to Port Douglas and out to the tablelands. We consist of three staff, including myself. We've been around for 15 years, and we primarily focus on the human rights of people with impaired capacity or people with very challenging, extreme and severe disability. That is our core group of people. Those are the people who, generally, will fall through the gaps.

I'm coming here today to talk about the impact the NDIS is having on people with disability and on their families. It was said to me the other day, 'Wouldn't it have been great if the NDIS rolled out for people who were not actually accessing any services as the first point of contact, rather than those who are already in receipt of services.' That may have given an opportunity for those people who have always been left behind to learn and grow with the NDIS scheme as the scheme was being rolled out. That also includes Aboriginal and Torres Strait Islanders and people of non-English-speaking backgrounds. They all have, at the moment, a huge fear of the unknown, and they still have a huge fear that they will miss out again. We'll have an opportunity to explore some of those issues.

CHAIR: Mr Rowe, I think you were here for some of the conversation with the last panel, so I want to explore some of that a little bit further. You said you had 800 members. Are they largely service providers, or—

Mr Rowe : It's a network of people with a disability, their families or their carers. It's not a service provider organisation.

CHAIR: You said that their state of mind—if I can put it that way—is confused at the moment. That is from a lack of information they feel they have at the present time about the NDIS?

Mr Rowe : Yes, it is certainly a lack of information and a lack of engagement. I think some of the members of the panel previously talked about the expenditure of the state government on disability awareness, but my understanding is that while the numbers on paper that they have connected with providing information about the NDIS are relatively large—more than 10,000 people—when you are talking about 90,000 people, half of those being new, we really haven't scratched the surface in terms of getting that message out there. There is still confusion. People who currently have packages believe that that will continue and that they have a choice whether they go into the NDIS or whether they don't. People who haven't had that engagement with the disability system, particularly Indigenous people, are really at a loss about where to start. You have to look at it in a context of double disadvantage, for want of a better way of putting it: not only do they have a disability; they're Indigenous and some of them live in rural and remote communities. And I guess I need to make the point that when we talk about Aboriginal and Torres Strait Islander people, while it's often thought that they all come from remote Australia, only 25 per cent of Aboriginal and islander Australians live in remote communities; 75 per cent live in metropolitan areas. But we're getting that same message from people within the metropolitan system.

If I'm really blunt, I think the strategies to engage the Aboriginal and Torres Strait Islander community that have been adopted by the NDIA have missed the mark. They really haven't connected with the people and the intent. I think, to the fairness of the NDIA, they've got lots of balls in the air. They've got an incredibly huge task in a short time frame. One of the terminologies I use, sometimes, when I'm speaking publicly is that I'm very fearful that we're looking at another pink batts moment with the NDIS. With this obsession that we have to have it rolled out by a certain date, we just keep rolling forward, even though there are red flags going up left, right and centre, where people are saying, 'Too fast! We're missing. We're not connecting with you.' We're hearing that from people with a disability. We're hearing it from service providers. We're hearing it from the support system.

I don't quite know what more to say on that issue, other than that the time frame, I think, is a real problem. When we talk about the Indigenous community—and Bronwyn can do a far better job than I—often it's about people having the time to tell their stories, to get to know people. If I go back to the double disadvantage, there is a real lack of trust, because of people's experiences with authorities in time gone by. While you can have an LAC turn up, whether they're from Carers Queensland or they're another provider that's been engaged, they're seen as someone from the government and people are really reluctant to engage.

We keep hearing stories that, if you've not engaged in the first couple of minutes, the person with a disability will tell you what you want to hear or what they think the people want to hear and they'll go away. I guess I'm concerned that there isn't that support mechanism in place that allows people to engage in a real way and feel supported in a real way. The agency that I manage is an advocacy agency and, probably, eighty per cent of our work is in the aged-care area. We, sort of, straddle both disability and aged care but not really. We're more in the aged-care environment.

I guess what I'm seeing is that advocacy is seen as a bit of a dirty word within the NDIS environment. I know that, probably, at times, disability agencies have been poorly behaved but, I think, when it comes to supporting a person with a disability to have a voice, it's really important. Whether they're a disability advocate—one of my colleagues, the other day, described them as 'a black LAC' as in an LAC worker that is Indigenous. People need someone that they can trust to support them through that process, and we just don't have it in the current environment. Even when we're getting plans through, people don't know what to do with that approval and so they're sitting on it. While we tick one box to say they've got a plan, people still haven't got a service. So we're no better off.

CHAIR: I think the evidence, nationally, is that the plan rate is running at about 80 per cent, but of the 80 per cent after three months there's only 70 per cent delivery of services. If you add those—whatever the proper mathematical expression is—or put both of those together, then the delivery of services is running at about 60 per cent of what might have been expected.

Mr Rowe : What was hoped for.

CHAIR: Hoped for, yes.

Mr Rowe : Certainly, one of the comments I do want to make is that the NDIS is welcomed. It's wanted. The community support—and many of you will have been around for that journey—for the NDIS has been huge. And it's extremely important that the concept that was developed, supported and legislated for translates into a service that achieves the goals that it originally set out to achieve.

CHAIR: One of the criticisms we've heard in other states—I just want to test whether this is relevant here—is that, partly because of the block-funding model that previously existed, there is a dearth of data about a lot of individuals or data is unreliable. Therefore, it doesn't automatically translate or maybe, in some instances, there's not been the optimal delivery of data by states and territories to the NDIA to enable people to be picked up in the new system. Have you any experience of that here?

Mr Rowe : Many years ago I worked for the state government for 15 years. My last role there was as the executive director for Disability Services Queensland so responsible for the funded services and the state government delivered services. I would agree with you. The data, particularly going back 20 years, was very poor. Having been a service provider before coming into this role, the data that we provided was very limited. You look at that data through the lens of that 50 per cent increase in population who we really know nothing about. We do know that historically Queensland has had a very low spend on disability services on a per capita basis. But interestingly we've had the highest spend on an individual per package basis in the country. What that means is that a small number of people are getting very large packages. Other states and territories have had people with very high support needs as well as people with low and medium support needs, and there are some early intervention services that we haven't had. Even the data that we do have is skewed by the historical funding arrangements, where only people who were in urgent and critical situations got support or the people who were articulate and loud enough to lobby to get that support.

Senator GALLACHER: I'm trying to mull through the previous evidence and where you're at. Do you know how many people from Indigenous backgrounds are accessing NDIS plans in North Queensland?

Mr Rowe : No, sorry, I don't.

Mrs Clark : They said about nine per cent of the population that has access to the NDIS are Indigenous people.

Senator GALLACHER: Is that nationally or in Queensland?

Mrs Clark : That was in Queensland. That was from DATSIP at the end of the year.

Senator GALLACHER: So it's nine per cent of 46,000.

Mrs Clark : Are Aboriginal and Torres Strait Islander people.

Senator GALLACHER: I'm just try to get my head around whether this is an opportunity for Indigenous communities remotely and also communities that live in cities to access better services and improve their outcomes versus the people who are not going to be able to cope with what's coming along the train, who already have got a plan. Is the glass half full here or half empty?

Mr Rowe : It's probably both, depending on which day we look at the glass. I guess what I mean by that is that there are opportunities. The half-empty opportunity is the fact that there aren't strategies to engage. Last week, for example—

Senator GALLACHER: But that would be true of both cohorts.

Mr Rowe : That's certainly true of both cohorts. But when we're talking about Indigenous people with a disability or people with a disability in a rural and remote situation—I'm being kind of broad—the access to information is really limited. The access to information and support from people who you trust is even more distant.

Senator GALLACHER: What should the agency be doing in that space? Please be as frank as you possibly can. What should the agency be doing in this space, because this is not a new issue?

Mr Rowe : No. We want to use the word 'thin markets'. There are thin markets within the NDIS environment, whether it's because of location or whether it's because of the fact that you have a cohort of people who are reluctant to use mainstream services—that is, Indigenous Australians. I think we've got a look at what's out there in the marketplace at the moment and how we can engage and use them. It was really good to hear Matt refer to the NACCHO report. I was speaking last week with the Institute for Urban Indigenous Health in Brisbane, which is a large Indigenous health-service provider. There are 55,000 Indigenous Australians that live in that south-east corner, and 35,000 of those people use that service. I think their first dialogue with the NDIA was last week or the week before, and that was at their approach. I'm going to show my ignorance here about some of the rules, in terms of you can't be a provider, be an LAC, be a this and a that. I think, in those communities, we've got a look at strategies about how we do it differently. That one-size-fits-all approach doesn't fit.

Putting my aged care hat on, I'm going to be a bit all over the place. When we talk about rural and remote communities, there is often one service provider in town. If we're talking about providing personal care and support, if someone has an NDIS package, the local aged-care provider that has been through the Commonwealth's accreditation processes, has had police checks et cetera should automatically be recognised. They're not. People are required to have two quality systems, two criminal history screening processes. If you're providing 10 hours support to an individual, you can't afford, as a service provider, to jump through this additional set of hoops to provide service for one individual. So, whether the word is 'mutual recognition', I think we've got to be more creative with our approach. I know there's legislation that holds the whole lot together, but we've got to look at the intent of the legislation and how we execute that. I think we're looking at it far too rigidly.

Mrs Renton : I'd have to agree with that. I think, for Aboriginal and Torres Strait Islander families that I have spoken to, they have trust in the health system, so that's a good start, whereas the NDIS system and the health system seem to have this wall between disability and health, and I think they should be complementing each other so that people do get that trust and do get their needs met because of the disability. I think one of the issues that are confronting people at the moment is the eligibility criteria that are required. A lot of people don't have the medical evidence or a specialist's report that actually verifies exactly what their diagnosis is and what the future might be to promote their independence to live within the community, and often there is a reluctance to put your foot into the water—there might be a crocodile lurking in there!—to identify as a person with disability and then maybe be taken away from your family or away from that unit or away from your community to get the assistance that you need. So there is a reluctance for people to engage because of previous history.

Mrs Clark : Coming from an Indigenous perspective, as an Aboriginal woman who has worked in the communities and lived and breathed it myself, there also needs to be an understanding and someone on the ground that you're talking to that knows the politics of each community, because it's—sorry if I use this word—deadly to go use your medical centre. But some people don't go there. There are issues in community where they feel, 'Oh, I know that one in my personal life; I don't want them to know my business.' So there needs to be consultants and also discussions around what are the sorts of things to be aware of, because not everyone will access that—they will prefer to go mainstream; they will prefer not to use a certain Aboriginal corporation. As we all know, it's not a one size fits all, but it's definitely something that needs to be—and you need to be with the person in that community to have that advice, because we could all assume, but you'll never know unless you're there.

Senator GALLACHER: In terms of the diagnosis, is that because medical records are not kept or because they can't access them?

Mrs Renton : Generally, in some of the areas, people don't seek out the medical assistance or the mainstream services that the general population might be utilising. And it's not just through the NDIS system; it's also through the Centrelink pension system, where there is a whole range of complexities around a person's disability that may be known to the general community but may not be specifically diagnosed or seen as being different within that community, because they just recognise that that's the person and they've got these limitations. But, when you're actually asking for evidence of what those limitations are to be able to develop a plan so people can have meaningful lives and contribute and be included in the community, that's a different level of complexity again.

Senator GALLACHER: What should the agency be doing in this space? There are plenty of examples—there's the organisation you mentioned, and I'm sure there's MoneyMob and those other types of communication exercises that are well tried and successful. Is there any suggestion that they should be doing the same in this space?

Mr Rowe : It's about engagement. It's about talking. NACCHO is a network of community controlled health organisations for Indigenous people across Australia. It's been around for 40 years. IUIH is perhaps more recent than that, but, again we've got to talk to the organisations who are connected to the potential users of the service to seek out their advice. Hindsight is a wonderful thing. If we look back to some of the earlier work that the NDIA did, it was around a trial site in the Barkley region to work out how to work with Indigenous people. It was never going to translate to someone living in West End in Brisbane or Redfern in Sydney or even Palm Island down the road. This one-size-fits-all—

Mrs Renton : Each community is very unique.

Mr Rowe : Yes. It's a mixture of needing to allow enough time for that engagement to happen, to have those stories, to have that dialogue, to get that engagement, to build that trust. Because we're hell-bent on everything needing to be rolled out by 30 June, we can tick that box, but we've left a huge number of people off the train.

Senator GALLACHER: Under the current rollout parameters, we'll get to the end and most Indigenous communities won't be involved.

Mr Rowe : There will be a significant number of the Indigenous community who won't be involved.

Mrs Clark : Or they'll sign up and they'll never access anything because it was such a horrible process or they had to share too much information to begin with. Then it'll go back to the family. We just look after our own, so mum and dad or grandma, or however it's going, will have no break. Then there are family breakdowns and issues.

Mr Rowe : We'll go back to the situation. The work of the Productivity Commission said government will pay more by doing nothing than it will by establishing the NDIS. Ultimately, when families can no longer support, child protection systems, health systems or the criminal justice system come in. I'm sure you're all aware of what happens when things don't work. We're really concerned that it's unravelling and that things aren't working as was intended. We almost need to hit the slow button or the pause button, take a big, deep breath and look back. I guess that's part of what the committee is doing, which is great, but we need to see that translated into some different action than what we've been seeing.

Senator GALLACHER: There'll still be the ability for people to come to the scheme, no matter the pace of their involvement. What about people who are in the scheme now? Will they continue and improve or will their services be jeopardised?

Mr Rowe : Bronwyn might want to answer that, just from talking to some of our members.

Mrs Clark : Obviously, because we're state-wide, we're in all the different communities—where it's being rolled out, it's started to roll out or it's been rolled out for a long time. The feedback we hear is that there are the positives and some negatives. There have been issues for people where they have things in their plans and they've been completely missed, and they were health concerns, and then there's an argument: 'Is it Health? Is it the NDIS? Who's picking that up?' It got to the point where a client had to go to the hospital to get basic care for herself. A lot of people say, 'It's just so confusing. It's hard. It's a fight. I feel like I've just got to constantly fight and prove and prove.' They get tired. They're so tired. They're already trying to make sure they get the best for their family member or whoever it is and they just feel like they hit brick walls. They say, 'Who do I turn to?' Some of the comments I've heard are: 'Why can't you just do it? I know you. Why can't you help me to get my answers?' I'm not funded to do that. It's not my role to do it, but, when you want to help your community, you try as much as you can to deliver it.

Mr Rowe : In fairness, we are seeing improvements in people's situations. Again, there's the speed. You've got to look at people's life experience. I was involved in closing a number of institutions in the nineties for people with a disability. In hindsight, we went to these people and said, 'Do you want to live in the community?' and they heard, 'Do you want to live in Kathmandu?' Their perspective is: 'I have no idea where Kathmandu is. I don't know anyone in Kathmandu. I've never been there. No, I'm really happy here.' We've got to be careful that people don't just limit themselves to their experience, and that's their information and their platform. I think that's what we're seeing with some of the transition that is happening at the moment—that is, people are saying, 'I'm happy with my package,' because that's all they know. The optimist in me says that over time people will see other things that are happening and, because there's a capacity for the packages to be reviewed, they'll start looking at it differently. That's part of the education, that's part of why you need time, that's part of the dialogue we've got to have so that people get to know about Kathmandu, so they can make an informed decision.

Mrs Clark : And our people are also just used to being told: 'Yes; okay, do it. That's how it's done.' When you tell them they can question it—'You can say what's going on? Why do you not like this?'—they say: 'I can't ask that. I've got to listen to them.' So it's building up their confidence to be able to actually question things, and that is definitely something that needs to be focused on. And that's not just Aboriginal and Torres Strait Islander people, that's most people with disability as well.

Ms HUSAR: Ms Renton, my question is more to you. You mentioned advocacy before. I'm a big fan of advocacy; I think it's incredibly important. Part of the functionality of the NDIS was to not need or rely on advocacy, that people could get what they wanted without having to have a blue about it. I think in Aboriginal communities, though, it's slightly different—and I take your point about multiple interactions with different agencies. Do you think that would be a partial answer to some of the situations that we're finding now, so maybe a referral point of contact to take those people in and then refer them? They may not be able to provide the one-on-one services or the actual services, but get someone in, get those necessary reports and then move to the NDIS—so almost like a pre-step before the NDIS, where you've got the multiple layers of government interventions or involvements—or the agencies that you outlined, Mr Rowe—to do that as a pre-step to getting onto the NDIS?

Mrs Renton : Absolutely. With the whole concept of the NDIS giving people choice and control, we've ultimately assumed that everyone knows what they want or how to go about getting what they want. If you talk to the disability sector, people with disabilities and their families, and other people from other cultures, they don't know what they want. They've always just been happy with what they get, because they've always been the last peg on the rank. Unfortunately, we've got a whole range of work to do in empowering people to stand up for themselves and have a choice and have some direction. And if they're missing out on being provided with that initial training—so what is this all about, how do I go about getting my needs met and how do I have a choice in controlling my life—then people won't engage. We've sort of done a bit of a flip around, where we've said: 'This is already happening for most people. Here you go; here's your package, just go and find the supports that you want and that you choose.' We don't tell them how to go about doing that when they haven't had that opportunity for most of their lives.

Ms HUSAR: Mrs Clark, how do you see that working from an Aboriginal perspective?

Mrs Clark : I think there would definitely be something there. There is the feedback where you do hear it, where they're saying, 'Is there someone I can go to?' With the ones who have plans, they have their service coordinators and things like that but they're saying, 'I feel like the only reason they care is because I'm paying them out of my package,' instead of having that person whose supporting them to get to where they—

Ms HUSAR: To independence?

Mrs Clark : Yes, but without us telling them and pushing them. What they have to do is actually: 'Here are your options, here, and in plain English. They're right in front of you.' The person who's giving that support, they should actually know those services; they've done the connecting. With Indigenous people, its word-of-mouth; you hear, 'Yeah, they're a good place.' 'Okay, I'll go to that, because I've heard that.' It really comes to ground roots, those community people who actually know and are in everyone's faces asking questions. I guess that's one way of helping.

Mrs Renton : Offering opportunities is probably the key to connecting with people. But it's not just offering opportunities and giving them a variety of ideas; it's about, 'If I make those decisions, what are the unintended and intended consequences?' Again, we're going right back to people being disempowered and then trying to empower them. So it's not even just giving them a range of options; it's actually walking them through each of those options so that they make an informed decision for themselves, rather than someone telling them what to do. There's a whole scope of work that needs to be done around that before this sense of control and choice is actually going to be a reality for people.

Mrs Clark : If I can talk about smaller communities, I think it's definitely going to be something where they're going to trust that person who may already be in that community, and they're going to go to them to ask: 'Who are these mob that've just flown in and told me about their service? What's this all about?' It's going to be nonpurposeful or not even within that person's or that service's role, but those people will still go there and they'll expect that the community person or service has the answers. I think if you actually prepare that community service or whoever it is in that community that's known, then at least they've got some answers—even it it's the bare basics.

Senator GALLACHER: Are there any entrepreneurs or Indigenous businesses that are looking at this space?

Mrs Clark : There are some. We have two members—one's a social worker in Bundaberg, one's a psychologist who has just qualified down in Brisbane—that I was talking to about this the other week. I asked, 'Have you thought of working for NDIS?' They didn't even have a thought that they could work for it. I asked them if they'd seen that the NDIS had advertised. They said, 'No, we didn't even think to apply that way.' There needs to be more focus on maybe advertising for community members or Aboriginal or Torres Strait Islander people that there are roles. I know there are some people who are discussing and talking about maybe a disability service that also has a cultural perspective. It's all about how they need that ground funding to start it, as well as being able to prove that they can keep going if they don't get more supported funding.

Senator GALLACHER: But from the evidence you've given us today, it probably is an area where—it's not just the niche; you could tailor a solution.

Mrs Clark : Absolutely.

Mr Rowe : There certainly is some room for some investment. Reading NACCHO's submission, clearly they've been thinking about it, but they've also ticked the box that says, 'It's not financially viable, and it risks the rest of what we do.' I know other organisations are looking at it. From a Queensland perspective, and that's the lens that we're looking through at the moment, while the rollout's been happening for 21 months, there are large population areas that are yet to be engaged. What we'll see emerge over the next little while—I think we probably will see some agencies who will come out and will try to take up that opportunity, but they're not lining up at the door at the moment. Even the preparation that was intended, with the LACs being on the ground six months before, is behind. We're now three months before the rollout in the South-East Queensland regions, which is a population of 60,000, and the LAC tenders haven't even been announced. By the time they recruit and get actually people on the ground and starting to talk, I'm struggling to see how we're going to have much more than a three- or four-week lead-in.

CHAIR: I thank you all for coming along and discussing this significant issue with us today.

Proceedings suspended from 12 : 28 to 13 : 30