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Joint Standing Committee on the National Disability Insurance Scheme

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

GRIFFIS, Mr Damian, CEO, First Peoples Disability Network

CHAIR: Welcome. Information on parliamentary privilege and the protection of witnesses and evidence has been provided to you. I invite you to make a short opening statement. At the conclusion of your remarks we will invite members of the committee to put questions to you.

Mr Griffis : Thank you for the opportunity to speak today. The First Peoples Disability Network is a national organisation representing Aboriginal and Torres Strait Islander people with disability. We are a unique organisation in that we are entirely governed by Aboriginal people with disability. That makes us unique in an Australian context and also internationally. Because we are a strong community based, member based organisation, we are able to provide expert advice on the implementation of the NDIS as it relates to Aboriginal and Torres Strait Islander people with disability and their families. As a disability organisation we are strong supporters of the NDIS and we want to see it succeed.

As an Aboriginal organisation, we want to make sure that First Australians with disabilities have the same right of access to the scheme as other Australians. It is in our interests for the scheme to succeed, and at FPDN we say that meeting the needs of Aboriginal people with disability is one of the most critical social justice issues in Australia today. If Aboriginal people with disabilities are not an integral part of the scheme from the outset, then it is very likely that the current disadvantage experienced by Aboriginal people with disabilities will only be further entrenched.

In highlighting the positive aspects of the scheme, one of the main strengths has been the continued level of community support. The need for Aboriginal-specific disability strategies has been acknowledged within the agency, and it has been widely supported regardless of political persuasion. We are very encouraged by this, along with the goodwill that we have experienced in our day-to-day dealings with many of the NDIA staff.

The scheme has a unique opportunity to make significant positive change for many Aboriginal people with disabilities and the communities in which they live. We also feel that the scheme, at its heart, is about self-determination for people with disabilities, and this sort of approach has resonance with many Aboriginal people with disabilities in communities.

We are involved in establishing an Aboriginal local area coordination program in South Australia. It is a unique program in that two of our staff will be co-located in the St. Mary's office. It is a very modest beginning, but we are very confident that we will do a good job there and then hope that we can roll out the Aboriginal local area coordination program across the country. This is a very positive development as we see it. It is also a unique one, because we will have two of our staff, Aboriginal NGO staff, co-located within a government agency. I think both parties are very interested to see how this goes.

We are very concerned but not surprised by the low uptake of Aboriginal and Torres Strait Islander people into the scheme to date and we recognise that change will take a generation or more in some of our communities. But we have to address the tension between the here and now, and looking a decade into the future.

A major recommendation we would like to make today to the committee is the establishment of equity targets for Aboriginal and Torres Strait Islander people with disabilities. The lack of good data and research on Aboriginal disabilities makes it very difficult to come up with the perfect target from the outset; however, to get a sense of where we are compared to where we should be, we can calculate a starting benchmark based on the proportion of people with disability who are Aboriginal or Torres Strait Islander. Using ABS data, we have calculated that at least 5.1 per cent of the total populations of Australians with disabilities are Aboriginal people.

There are significant limitations in using this number. The burden of disability borne by Aboriginal people with disability would be somewhat higher but, even taking this as a low point—as a basis for determining an equitable allocation of NDIS expenditure—this translates into an expenditure of $51 million during the first stage of rollout; $882 million over the seven-year rollout; and increasing to $1.1 billion per annum once the scheme is fully rolled out. That is the Aboriginal component, at the very least.

CHAIR: So you would see them actually absorb them in costs, as in expenditure?

Mr Griffis : Yes. That is not a perfect figure, because we have the underreporting on disability to deal with too. Not only does this illustrate how significant Aboriginal disability is; it also represents the size of the financial risk of the scheme, if strategies are not addressed from the very outset for Aboriginal and Torres Strait Islander people.

We have four recommendations to the committee today, and I will finish on that. Our first recommendation is to commit to a dedicated long-term strategy for the access to disability services by Aboriginal and Torres Strait Islander people and the NDIS. A couple of very positive developments recently: we have a national Indigenous disability action plan, which our organisation chaired, and that is moving forward. We also have an Aboriginal and Torres Strait Islander strategy under the scheme which we have been tasked to develop. We feel very positive about these two developments. We are also concerned that those are high-level things—we want to start seeing grassroots community change at the same time.

Our second recommendation is to enhance the existing scope of the outcomes framework to incorporate equity targets for access. A third recommendation is again committing to the national Indigenous disability action plan, as I have just mentioned. But also an urgent measure is to redirect a portion, where there is underspend on disability service for Aboriginal and Torres Strait Islander people, into research which better understands the true prevalence and nature of disability amongst our communities. There should be a dedicated communications strategy for Aboriginal and Torres Strait Islander communities that has a starting point where the messaging is appropriate to the way disability is talked about in communities, so we are thinking of commercials on NITV and those sorts of things. The communications strategy must include a concerted outreach approach, however, led by organisations like First Peoples, that firstly informs and then introduces to community the National Disability Insurance Agency and other support mechanisms.

The other part we wanted to mention was training up Aboriginal and Torres Strait Islander people as community connectors. That work has just begun and it is very positive, potentially, but we need to see that in the long term. It is not going to be enough for that to operate over one or two years. Designing and trialling community based rehabilitation models of service delivery, like those that appear in very income poor settings, often work very effectively. That is the nuts and bolts of what I want to say today.

CHAIR: We are going to the NT next month. Do you want to provide any observations or advice?

Ms MACKLIN: Just on that, one of the things that you have mentioned before is the effectiveness of the disability support organisations, so it is in that context?

Mr Griffis : We think the disability support organisation's program is a fantastic program. The issue for us is that we need to see that have a long life. In the next year or so all we will be doing is opening doors. We need to be able to have a long-term rollout of that program, but we think that in principle that it is a very good program. With regard to the NT, as we have mentioned before, our concern there is about to under-reporting of disability. The data that has been presented from the Northern Territory, we would argue with very significantly. We would say that, at full launch within the Barkly, there would be at least 230 Aboriginal people that should qualify for the scheme—not the figure of 50 or so that gets mentioned. As we know, we have not had a conversation yet around foetal alcohol spectrum disorder. We say that that that very clearly is a disability—it is disabling; it is an impairment. It is on a spectrum, so some people may not be severely and profoundly disabled. Up that way, a lot of the local people talk about FASD as a big issue, and there is some great work that has happened in the Kimberley under James Fitzpatrick and June Oscar, who you would all be familiar with, that I think should be replicated in the Barkly, to be honest with you. Our issue there is not so much with the agency—it is difficult dealing with the NT government around this issue, I have to say.

Senator GALLACHER: The minister was once the member for Barkly, wasn't he?

Mr Griffis : I am not sure about that.

CHAIR: That is history. That has not made any difference whatsoever, where the minister comes from, I can tell you. I know it should.

CHAIR: I remember dealing with the Treasurer up there once in his area. I get your point. It does not seem to have any correlation. Are we seeing any impact in the APY Lands?

Mr Griffis : I think the work of the NPY Women's Council is really important there, and they are doing some really good work. The challenge that we face—

Ms MACKLIN: This is where the DSO thing is being effective. I think it is working.

Mr Griffis : Definitely.

Ms MACKLIN: It is only a start, but it sounds to me, from what I am hearing, that people are very happy with it, because it is slow and steady and getting into the communities—doing it in a way people feel respected.

Mr Griffis : Absolutely. There is a lot of learning there. That is the oldest disability Aboriginal program in Australia. They began that in the nineties, well before what was happening in other jurisdictions, so they are a really important leader around this, and they do have some really important learnings. We work closely with them; we talk with them regularly. Scott may want to add a few things. We are very keen to establish this equity target at the outset—I think that is really critical.

CHAIR: We understand where you are coming from. Newcastle has a large Indigenous population. From your perspective, do you have any observations about things there?

Mr Griffis : In the Hunter, our research would suggest that there should be as many as 728 Aboriginal people that qualify for the scheme at full launch there, given that it now has Maitland and Lake Macquarie on board. So far, I think the numbers are roughly around 50 or so. Again, that is not necessarily criticism of the agency; what we need to do is really build capacity and spend time with the families. We would hypothesise that there are many families up there who have been doing it for themselves, and we need to spend time with them to build confidence. Then in time, maybe in a decade, we might start seeing some results there. All we are getting at the moment, I think, is Aboriginal people who have been known to the system, and their files are transferring across.

CHAIR: And are we happy with the outcomes that they are achieving? The first point is very valid; the second point is that if you are going to get a positive story out. Those who are actually in the system now and who spread through their family networks may offer a positive experience or not.

Mr Griffis : Those Aboriginal people who are accessing the scheme at the moment appear to be happy with it. I think they are the people who could be the conduits. They are the kind of people, for example, that you want to appear in commercials, to be honest with you, about this is how we work the system—

CHAIR: That is probably not a good term, but I know what you mean.

Mr Griffis : Not so much in those terms, but this is how we got support for ourselves.

CHAIR: This is how the system worked for us.

Mr Griffis : I think there is a lot of opportunities there.

Ms MACKLIN: Damian, you are talking with the agency about the equity target idea?

Mr Griffis : We will write to and certainly raise that with Bruce Bonyhady and David Bowen. I raised that with them yesterday, so it is not news to them. We will now try and make a more sophisticated argument around it. We will be presenting some data to them as we see it at the moment.

Mr Avery : There is an outcomes framework group that has met, and we provided this feedback directly to them when they presented this overall framework.

CHAIR: I would be looking at—as a word of encouragement and advice—not to be wedded to a particular model, but just the principle in the first place and then working with people as to how it can best be managed. I am not deriding what you have put on there at all but rather than someone comes up with something: 'Nup, we are doing it this way, no way' sort of thing.

Mr Griffis : Yes. We do want to work close to the actuary. So if we do have a criticism at the moment, it is probably our engagement with that side of things. We have written to the actuary on a couple of occasions now and have not had a response as yet, so we are very keen to progress that and to keep you informed.

CHAIR: You have had no response?

Mr Griffis : Not at this stage.

CHAIR: How long ago did you first write?

Mr Avery : So the first one was in October, there was follow up early in the new year with a proposal—October 2014.

CHAIR: If you would not mind, I would like to see the letters. It would be useful to the secretariat to get an idea of what you are looking for.

Senator SIEWERT: It seems to me, given the comments you have made about the equity targets and the estimation of numbers being low, that it would be really important for the actuary to be doing some work on this—that is the point?

Mr Avery : That is the point we are making. A lot of the work that is happening at the moment—and there is a substantial work, and we would say pretty much exclusively around customer satisfaction. There are detailed surveys with hundreds of questions about people who are on the scheme and what their experience is. What we are saying is that there is a lot of people who are not on the scheme, and what research and what understanding are around those issues? We hear things for example about people with mental health conditions—things like 'We are not sure you are eligible.' There is a lot of grey areas in policy, which we have referred to the agency, asking 'where does this fit in?' We have had a conference in October in Newcastle; 130 people with disability turned up, and they raised a lot of those issues there. So we have got all this information, and we said these are the specific questions that people are asking and want answers to. These are people who are not on the scheme, and that is what we have got to catch up.

Senator SIEWERT: So 130 people turn up, yet we have 50 on the scheme?

CHAIR: Do you reckon the 130 that turned up are all eligible participants or a majority of them?

Mr Griffis : I would say they were but, if they are not, they certainly know other family members that are. That was another reason why they were there. I think the other point is it is how we ask the questions. If we do a standard survey around 'Do you have a disability?', a lot of Aboriginal people will not answer that question or do not necessarily understand that question. So the critical thing is how we gather the information, and that is where we are very keen to work closely with the actuary. If you look at where they get the data from at the moment, it is really not reliable. There are plenty of Aboriginal people that we meet that are not on the DSP, for instance, or do not engage with CentreLink terribly well, so you cannot rely on that. I am not a researcher—Scott is—but if I was a researcher or an actuary I would be a bit concerned that the data is just not reliable. I think that is one of the financial risks for the scheme, because this stuff is not well known.

Senator GALLACHER: That is the actuary's job. They are the ones that are supposed to protect us against us. So it is a very valid point.

Senator SIEWERT: I am particularly interested in how we are addressing FASD on a whole range of issues. What has been the experience so far with FASD?

Mr Griffis : Again, very anecdotal. You will probably find this up in Barkly. Some of the local organisations will talk about very large numbers of Aboriginal people with foetal alcohol, and I think this is where the work that James Fitzpatrick and June Oscar have done in Fitzroy Crossing is really important, because they have found a way to assess it in a way that is culturally appropriate. I guess the risk that we see is that we want to get people into an outcomes thing too but we do not want a situation where we have more of a pejorative view happening on Aboriginal Australia too. That is a risk here. We want to create a system where we know what the prevalence is roughly, but let's get people into the scheme and start getting support for them. But it is a highly specialised area. We refer a lot of our understanding to people like the Telethon Institute in WA, and James Fitzpatrick and June Oscar. I think they are the leaders on this one. But we would absolutely say it is a disability and needs to be included.

Senator SIEWERT: For us it is then, if we are finding that NDIS—and this will come up in the NT—is not adequately addressing FASD, what—

CHAIR: It would be handy if we found some examples of, 'Sorry, you do not qualify,' and then worked through those.

Senator SIEWERT: Exactly.

CHAIR: Are you aware of any of those?

Mr Griffis : I would not want to say that I am, but I have heard it anecdotally.

CHAIR: Do you want to have a look and, if you have got any advice, come back to us on it?

Senator SIEWERT: That would be really handy.

Mr Griffis : Yes.

CHAIR: In any jurisdiction. We had better leave it there, fellas. I appreciate your time today. I appreciate that it was a little later than we expected, but we had some really good feedback from the minister and the department which will really help the debate as we formulate our next committee report. Well done on your work. I appreciate seeing you next time.

Committee adjourned at 10:11