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

JULIAN, Ms Alanna, Facilitator, Council for Intellectual Disability

SIMPSON, Mr Jim, Senior Advocate, Council for Intellectual Disability


CHAIR: I now welcome representatives from the Council for Intellectual Disability. I thank you for appearing before the committee today. I invite you to make some opening comments if you wish to do so.

Mr Simpson : Thank you for having us today. We'd like, by way of introduction, for Alanna and I to have a short conversation about the Council for Intellectual Disability and then I will say a little bit about the key points that we'd like to raise with the committee. The Council for Intellectual disability New South Wales has been around for 60 years. It has evolved from being a peak organisation of service providers to something quite different. Alanna, could you tell the committee who runs the Council for Intellectual Disability these days.

Ms Julian : The New South Wales Council for Intellectual Disability has 15 members. Eight of these members are people with intellectual disabilities. The CID board talks a lot about issues in the NDIS, talks about important matters around advocacy for people with disabilities. The CID board also works closely with the Speak Out Reach Out advisory group, and that group is made up of people with intellectual disabilities who talk about issues that matter to them and they consult quite closely.

Mr Simpson : For most of our life we have been assisting the advocacy organisation. We still do that. But in recent years, we've been doing some other things. Could you tell the committee about those.

Ms Julian : The core of CID is systematic advocacy. The other things that CID does is run training sessions for government departments, organisations and trains them to learn how to consult effectively with people with intellectual disabilities. CID has an information service for people with disabilities and their family members to contact for any relevant information about issues for people with intellectual disabilities. CID also has a capacity-building project called My Choice Matters which runs different projects. It runs workshops around the National Insurance Scheme. It also runs leadership workshops, peer-led workshops that are run by people with disabilities for people with disabilities, a peer mentoring service. CID also creates resources. Recently it created a resource called My Health Matters, which is like a kit for people with intellectual disabilities and for people using non-verbal communication when consulting with their GP.

Mr Simpson : That was just to give you a bit of a flavour of who we are but the main point emphasised in our submission that we wanted to emphasise today is the particular issues for people with complex behaviour support needs in relation to market and workplace. We're informed on that from our 60 years of history but also from the New South Wales roundtable which we ran late last year, which brought together family members, advocates, senior NDIA people up to Helen Nugent—the chair of the board—and representatives of key government agencies, national and state.

Probably one of the two most relevant points that came out of that for the current inquiry of this committee is that we're in an experiment in New South Wales right now, and I think we're facing an experiment in other states, where the state government services have closed down as of 30 June in New South Wales. They historically have been the provider of last resort. They have also been, to put it more positively, the niche provider for people with complex behaviour support needs. The non-government sector does not have a strong background in this field. There is some really good work by the non-government sector, but the statistics and the experience show that it's been predominantly the state government services. The state has handed over its services by tender to non-government organisations. There is a major question mark about whether and how well that is going to work for people with complex behaviour support needs. We've got major concerns. The government is very confident. Really time will tell, but it is something to be watched really carefully. Certainly the provider of last resort and crisis provider space is a clear current problem. That was the state government's responsibility. We now have people in jail who previously would have been released into services provided by the New South Wales government. We're hearing more and more stories—and you'd hear this around the country—about where that provider of last resort gap is a fundamental problem.

On the workforce front, when you're talking about people with complex behaviour support needs, you can do it badly, in which case people's needs are not going to be met, their lives are going to be of a very poor standard and their disability support needs are going to escalate dramatically, because if you're not meeting complex behaviour support needs then all of a sudden you'll be finding that someone needs 2:1 support rather than a lower level of support. So it's not just bad for the people, which is obviously our concern, but bad for the sustainability of the scheme. To do that properly, you need a skilled workforce right through the continuum from local area coordinators, planners, support coordinators, behaviour support practitioners and then the hands-on—that's not the right word—disability support workers who are meeting people's needs hour by hour. If you don't have people with those skills, things are not going to work. You're going to get poor plans and you're going to get poor support and the problems that I touched on before of poor lives and cost escalation.

Arguably, that situation is getting worse in New South Wales with the exit of the state government from service provision. We're certainly aware of a substantial exit from the workforce of people who have had those skills in the state government system with the transfer to non-government agencies. We also hear what we see as reliable reports that young graduates—psychologists, for example, who are the core people in relation to behaviour support professional work—are reluctant to work in the non-government sector and very much prefer to work in the government sector. That's not something that I personally understand very well as an individual, but that's the report that we keep hearing. So there are major dangers in terms of workforce depletion and lack of workforce growth—and workforce growth is clearly what's needed given that the NDIS is about a broader range of people getting an appropriate level of support.

They're the issues I wanted to highlight in our opening comments, but I'm more than happy to answer questions.

CHAIR: Thank you, Mr Simpson and Ms Julian. You've provided us with a very detailed submission, including the proceedings of the roundtable, so I won't seek to go through all of that. It was just this provider of last resort that you've mentioned that I wanted to tease out a little more. You mentioned an example of more people being imprisoned rather than provided with services. Are you able to elucidate on that a little more? Secondly, has the public advocate, or whatever the equivalent position to other states is in New South Wales, been involved in this in New South Wales to your knowledge?

Mr Simpson : They certainly would've been—the Public Guardian in New South Wales. It has a narrower role than in other states. It is confined to guardianship as opposed to the broader advocacy roles and doesn't have the same freedom of public comment perhaps as applies in other states. I'm very confident that there would've been a lot of people under their guardianship who would've experienced these provider-of-last-resort problems.

The round table really brought it together. There was one group of people with specific expertise and experience in relation to people in the criminal justice system. Down the back in the reports from those small groups you will see that there is specific reference to people being held on remand for want of disability support options being organised and people staying in jail for longer than they needed to for want of disability support options being available.

I want to emphasise that we're not saying that no-one with an intellectual disability should be in jail. What we are saying is that, where disability support is the make-or-break issue for whether the court sees a custodial sentence or remand is needed, then that disability support should be available and provided.

CHAIR: Some of your recommendations are directed to New South Wales. Has there been any response from the New South Wales government?

Mr Simpson : One heartening thing in the New South Wales budget from a couple of weeks ago is that the Community Justice Program, which New South Wales Disability Services has run for many years, has been given some ongoing funding. Unfortunately, I haven't been able to find the detail of that. I suspect it's more about clinical and casework expertise as opposed to funding to provide supported accommodation options. If they had ongoing funding to provide supported accommodation options then we'd be much less likely to see people stuck in jail. This relates back to some of the ongoing interface disputes where the NDIA incorrectly, in our view, have taken a narrower view of their role in relation to disability supports than Disability Services did in New South Wales for people with criminal justice problems.

Senator GALLACHER: Mr Simpson, a continual theme since the committee was formed is that with the mental health services, disability services, psychosocial treatment and the like it is very difficult for a participant to exercise choice and control. Despite repeated advocacy to the committee by your respective organisations in each state, we're unable to get from the agency what this choice and control looks like for someone with a psychosocial disability. After asking at every hearing basically, I'm still not aware of what it looks like. Is there any glimmer of hope in New South Wales? Do you have a delegation or is the agency in its planning stages allowing someone to take responsibility for people who can't exercise daily, weekly or monthly choice and control? Is there anything happening at all?

Mr Simpson : I can only speak with authority about intellectual disability, but certainly those issues arise there. A lot of it goes back to the fact that the NDIS design was primarily driven—and good on them—by the advocacy from the physical disability sector. I applaud that, but I think a by-product of that and related things is a lack of adequate focus on how we ensure that real choice and control is exercised by people with intellectual disability for whom it doesn't come easily. Some of our capacity-building projects have been about equipping people to be better able to exercise choice and control, but the reach of those projects has been small compared with the number of people who might benefit from them.

The other factor is that, for some people with an intellectual disability or a psychosocial disability, exercising choice and control is extremely challenging. People with what has been called severe intellectual disability might have very limited cognition and very limited verbal communication. Inevitably, we are going to see a measure of substitute decision-making occurring. The agency hasn't yet come to grips with squarely acknowledging and dealing with that. So what we're seeing is a lot of de facto substitute decision-making rather than it occurring through the safeguards that are available in the nominee system in the NDIS.

Senator GALLACHER: What does the substitute decision-making process of the de facto look like? Is it a service provider having a group of people and making decisions for them?

Mr Simpson : At the most positive end of the continuum, it's about family who have a really good understanding of and very positive aspirations for their family member making the decisions in relation to NDIS planning and then choice of NDIS supports. At the other end, somewhere down that continuum, you've got families who have that very natural human parental instinct to be overprotective making quite narrow choices about very narrow lifestyles. In other cases, you've got people who just don't have involved families at all, where the existing service providers are then the de facto decision-makers in a lot of practical senses. Again, that de facto role can be done in the most paternalistic, old-fashioned way or it can be done in a very insightful NDIS act aligned way around developing that individual's independence and lifestyle to the maximum possible.

Senator GALLACHER: Correct me if I'm wrong, but it appears as if the rollout is just going to continue as it is and whole cohorts of people will be excluded and left behind and dealt with in another jurisdiction, whether it be prisons or—

Mr Simpson : That's—

Senator GALLACHER: If you take into account the Indigenous incarceration rate in some of the evaluation areas, there are people who have cognitive impairment, which is one of the reasons that they are even there.

Mr Simpson : That's certainly been our fear from the start. From the very start we have been saying that one of the problems—

Senator GALLACHER: That is the consistent evidence that the committees has had, right from the word go.

Mr Simpson : Most certainly.

Senator GALLACHER: I think I've been on the committee from the word go. You've been advocating that, and I just can't see any light at the end of the tunnel.

Mr Simpson : There are some limited things happening. Certainly through the NDIS corporate plan et cetera we have some very positive things about reaching out to people sort of on society's fringes, on the margins, and seeking to give them equal access to the NDIS, as a person who is able to come along and knock assertively on the door and argue their case has. But we haven't seen very much to date to put that into operation. What has occurred positively has usually been because of mobs like disability advocacy groups—the Intellectual Disability Rights Service here in New South Wales is a classic example—working with their clients, often outside of the funded role of the organisation, to assist people into the scheme. So we need much more in the way of a robust, methodical way of approaching that.

Senator CAROL BROWN: With the ongoing development of programs, policies and practices, in terms of the NDIS and some of the recommendations that have come out of this committee, particularly around the Productivity Committee report and McKinsey and the like, is there a more formal process where the NDIS or the NDIS reach out to expert groups and advocacy groups like yours to come together in more of a co-design sort of situation with people who have the knowledge of how things actually work as they are rolled out on the ground to actually have a look at policies and changes to procedures and how they actually affect people? Has that been happening?

Mr Simpson : Yes and no. In some contexts it certainly happens. There is the Intellectual Disability Reference Group of the NDIA, which has in it a range of people with intellectual disability, advocates and family members. Certainly, we have had input to a range of important NDIS decisions through that.

Senator CAROL BROWN: I'm not thinking just of input. We hear a lot about consultation and input, but I'm thinking more of a collaborative effort. Does that sort of thing exist?

Mr Simpson : Not in any systematic way. Positively, there is the current work that's being, I hope, brought to finality of developing a specific pathway for people with complex needs—a participant pathway. A number of us have had fairly intense involvement in that, and I would describe that as being along the lines of co-design, but nothing nearly as systematic as we would like. I don't want to be too hard on the scheme with all the pressures they're under, but too often we see things coming out from them where we think: 'We could've told you that wasn't going to work.'

Senator CAROL BROWN: As I go around and talk to people, one of the things that has been raised time and time again with me is about people who may be eligible for the scheme but either don't know about it or are not engaged. Are you able to provide any insight in terms of what outreach has been undertaken?

Mr Simpson : There's been nothing methodical, that's for sure. There may have been something. In theory, that's a role that one might hope that local area coordinators would do, but certainly in New South Wales local area coordinators have been overwhelmed by the New South Wales government imposed pace of transition into the scheme. Such work has, as I said to Senator Gallacher, been primarily done by advocacy groups. Whoever has been willing to go above and beyond—that's been where it has happened: some justice system workers, some homelessness workers. But you need something much more methodical and robust if you're going to have equity. That's what we've been saying, and I guess Senator Gallacher has been touching on that from the start: the NDIS is supposed to be about equity, not just for people to come and knock on the door but for people who don't realise that there is a door they can knock on and don't realise that there are ways in which their lives can be can be enhanced by the right disability support.

Senator CAROL BROWN: Do you think that outreach programs are best situated with local area coordinators?

Mr Simpson : I think the danger is that once you've established a culture and a way of working in a workforce, like with the local area coordinators, it's difficult to change it. So you'd need to do a lot of work there to change that culture. I think there needs to be dedicated resource, and I think some of this goes back to something that Mr Andrews said earlier to Professor Llewellyn: inevitably, organisations will be overwhelmed by the squeaky wheels of the complaints about the commission from the participants who know what they want and really want action now, in the case of local area coordinators or other people with disability. So I think you need a dedicated resource focused on that outreach work if it's going to get a fair slice of the resource cake.

Senator GALLACHER: I had a very specific case of a woman and a daughter living in a car in Adelaide. They were cognitively impaired. I don't know whether it was a recent event, but, according to the police who attended on a number of occasions, she was clearly not in a well state mentally. Where do they go? The police, who I spoke to on a number of occasions, didn't have a clear line of sight to actually provide some assistance, and they were concerned about the safety and wellbeing of the daughter. This was a six-week event—living in their car in various parts of a suburb.

Mr Simpson : If it's a clinical mental health issue then the local mental health team should be doing that work. Local mental health teams are often overwhelmed, and if it's not really clearly a mental health issue they will tend to want to pass the buck to the disability system. Who from the disability system is going to do that outreach right now? It's a tall order to see who would do it, so that really goes back to what I was saying to Senator Brown about a dedicated role within the NDIA to do that assertive outreach. And that won't be a simple matter. It's not a matter of knocking on the door and saying, 'Hey, fill in this access request form.' It might take five times going back to just get to the point where the person is willing to open the door and have a chat with you, and maybe you can then sit down and have a cup of tea. Maybe if you then do something that the person at the time sees as useful, they'll start to think, 'This person's on my side, unlike all these others who I see as being against me—my history of child protection,' and all the rest of it. And it's at that point that the worker may be able to say, 'There is this new scheme, and maybe there are some things there that can achieve some of your life goals to make your life a bit more like what you'd want and more positive.'

Senator STEELE-JOHN: Mr Simpson, I just wanted to start off with the first of your key recommendations, which goes to the urgent need for a skilled and adequate workforce. Professor Llewellyn, who gave evidence previous to you, talked about the need for competency based accreditation in relation to the new safeguards framework and things around that. Do you see that would be a valuable addition to the accreditation process here in Australia?

Mr Simpson : Certainly competency based accreditation has a lot going for it. But making sure you've got the workforce being developed who can be accredited is the other key challenge, and that's where I am very worried right now.

Senator STEELE-JOHN: I don't want to get too fixated on those safeguards, because obviously we're covering the market generally. In your view or in the view of your organisation, have there been enough provisions made to ensure that people with intellectual disabilities are able to access the complaints processes within the commission, if need be?

Mr Simpson : It's early days, but I can certainly speak positively about the interaction that we have had with the commission. They do have easy-read material on their website. It is a little hard to find, but it is there.

Senator STEELE-JOHN: It kind of defeats the purpose if it's hard to find.

Mr Simpson : Yes. They have specifically engaged us, and I think Alanna has been involved in some of this.

Ms Taylor : Yes, in some of the consultations with them. Just last week we did some training with them in how to help people with intellectual disabilities to see how they can reach out for them and do complaints and things as well.

Mr Simpson : So the commission has engaged us, and Alanna has been involved in that to provide some training to their front line staff about communication et cetera with people with intellectual disability, and one of our staff members is involved in providing some ongoing mentoring for that. So it's early days, but they certainly have made some taken some positive initiatives there.

Senator STEELE-JOHN: That is very good to hear. On your point about folks who do not have a parent or a significant family member, and then the service provider steps into the role of primary information giver in the planning process, that isn't something unique to folks with intellectual disability. It's something which causes me a particular amount of concern, given the potential for a conflict of interest with the service provider's involvement in that process. Do you feel there's a need for a mechanism that would act as an independent repository for the information in relation to the care needs of an individual so that service providers can step out of that space while the information they hold in relation to their clients is retained for the planning process?

Mr Simpson : That's an interesting idea. Making it happen would be challenging. What we've seen in New South Wales is that the state government disability services put together portfolios of information, or instructed their staff to put together portfolios of information, to help NDIS planners understand people's background and needs. The implementation challenges of that were great. To me, the most positive thing would be to provide funding for independent people from disability organisations—

Senator STEELE-JOHN: That's more what I was thinking of.

Mr Simpson : to be involved in preplanning with people and then attending the planning meeting. I think there have been conversations around that idea, and that would make a really big difference. Advocacy would help.

Senator STEELE-JOHN: Yes, indeed. Going to one of your key findings relevant to the inquiry generally, second from the bottom is your observation in relation to group homes. That is also a particular concern of mine—the continuation of the housing structure under the new scheme. Could you give us a bit more detail on that.

Mr Simpson : Certainly. We aren't opposed to group homes as such, but—

Senator STEELE-JOHN: I am, so don't worry.

Mr Simpson : We are strongly opposed to anyone being in a group home unless they have chosen to live with that small group of people, as any of us might choose to live with a small group of people, at least if we aren't in our own family situation. But that's not the way it works. All too often—focusing on people with complex behaviour support needs—what we find is that people with complex behaviour support needs are lumped together in a group home, and inherently that's going to make it a lot harder to meet each individual's needs, because if you've got four people with behaviour support needs in the one group home then it's likely to be a very incompatible mix which will both exacerbate problems and make it harder for staff to meet individual needs.

Senator CAROL BROWN: Sorry to interrupt, but is that also an issue in the way funding is provided by the NDIS? If someone's eligible for SDA and they're in a group home or independent living or supported independent living, it's my understanding that the way that some of these homes are set up, particularly in terms of how they have the contracts with state governments that may own them, is that the money goes to the provider and the provider provides money to the state government. That would, I would suggest, put some pressure on making sure you get a person that's eligible—not just a person that might be interested in living in a group home but someone that would be eligible to receive SDA. Have you heard that?

Mr Simpson : I'm not on top of the detail of that, but, as I understand it, certainly the combination of the way in which the New South Wales government has exited from service provision and given long leases on the group home real estate to the service providers that have taken over from the New South Wales government and the way in which the SDA funding is structured very much puts a strong encouragement on group homes for people with high support needs. The combination of those two things is going to make it very hard to move to more individualised support arrangements for people with complex behaviour support needs. The result of that will be, firstly, that people's lives are lousy in a lot of cases and, secondly, that the potential cost efficiencies of meeting people's needs well, thereby reducing support needs and leading to greater sustainability of the scheme, are potentially lost.

Senator STEELE-JOHN: Looking more broadly at the issues that we are facing with this scheme, I think you made a good point in as much as the campaign for it originally was very much driven by folks from the physically disabled community, and many of the ways in which we as politicians conceptualise the scheme is in relation to folks with physical disabilities. When we move into intellectual and cognitive spaces the complexity increases, the high-support need increases and in some ways that is difficult to manage for an agency with a limited number of folks that it can employ. In your experience as a systemic advocacy group, are we reaching a stage where however well people are trained, however well they are informed and however thoroughly consult, at the end of the day there's simply not enough people for it to function effectively for people with intellectual and complex support needs? There are not enough people currently employed in the agency to do that?

Mr Simpson : That's been a problem from the start. I have to qualify it by saying it is partly related to the breakneck transition pace imposed by the NSW government. Planning has all too often been very quick and very dirty due to the number of people that planners are expected to get plans in place for each month, which means that genuine engagement with the person with intellectual disability, and even with their families, has been minimal. At a higher level, I've been dealing with a whole lot of NDIA senior staff since the scheme was set-up. I would describe most of them as being very hard working people seeking to do their very best. But I've seen the pressures on them, so much of it has been about putting out the current bushfire rather than getting on to dealing with issues like provider of last resort and complex needs pathways. The staff ceiling, to me, has been crazy.

Senator STEELE-JOHN: Thank you.

CHAIR: Thank you very much for your submission, it was very detailed and appreciated. Thank you for coming along and discussing it us this morning.