BUTTERWORTH, Mrs Mary, Chief Executive Officer, Developmental Disability WA [by video link]

GRANT, Ms Leticia, Advocacy Manager, Developmental Disability WA [by video link]

LIVINGSTON, Ms Anne, Support Coordination Manager, Developmental Disability WA [by video link]

[14:26]

CHAIR: Thank you for coming online for this hearing.

Mrs Butterworth : Each of us are going to speak for about 10 minutes, if that's alright?

CHAIR: Can we make it about five minutes, because we're running out of time. We've still got a lot of people to get through. Whilst I don't want to restrict you, I suspect we are hearing the same stories from different organisations. If you could keep it to five minutes, that would be good. Please go ahead.

Mrs Butterworth : That's fine. I want to start off by saying that I endorse everything said by the previous speakers 100 per cent, so there's no need for us to repeat any of that. Furthermore, Developmental Disability WA is a member of Inclusion Australia, which has put forward a very extensive response to the issue around individual assessments, so there is no need for us to go over the same thing; as you just said, we don't want to repeat what you've already heard a thousand times.

I want to talk about, from my angle, people with complex communication needs. In our minds, this group of people with very high support needs are not getting the support they need. An awful lot of money and time is being poured into behaviour plans. If only the person had a communication device and a system and way of communicating, a lot of those behavioural issues would diminish. There are all these terms of behaviours of concern. I'm thinking of a principal from Kalgoorlie, where there is a needs support school, who said all the kids' behaviour was really extreme. She introduced communication tools for all those kids, and the behaviours have got down to almost nothing. A huge proportion of the NDIS funding has been poured into behaviour, but, in reality, if people had a way to communicate their needs a lot of the behaviours would disappear. So often it's about a huge level of frustration. To both you gentlemen: I can imagine that, if I put tape across your mouths and taped your hands to the desk, and you couldn't speak and you couldn't write, you'd very quickly lose your lolly—

Senator STEELE-JOHN: Careful! You'll be giving the chair ideas!

Mrs Butterworth : and your frustration levels would go through the roof. Time and time again, this behavioural issue is because people who are non-verbal don't have a communication system. That's something that the NDIS might want to direct their attention to. In group homes, we know of a case where the staff do not bother to use the communication system of a young man. His behaviour goes through the roof, yet when our team are with him he doesn't have any behavioural issues, because he's able and has the opportunity to communicate his real needs. That's fundamentally the problem. It's a really widespread issue.

Nationally, there's not much training available. Recently, Edith Cowan University were offering postgraduate training in complex communication for teachers and therapists. However, with the new government fees, those courses have gone from $800 per unit to something like $2,500. Our organisation was going to fund a number of our staff to do those courses, but with that sort of change in fees it's become unaffordable. I'd say the quantum shift if you want to reduce behaviour is to actually train teachers, therapists and support workers in complex communication. We recently had a man who had been living in a mental health institution, who has intellectual disability. When he came out his family said 'He can't communicate.' Yet our communication consultant, within an hour of working with him, was getting very clear yes and no answers to what his issues and needs were. I suppose that's fundamentally what I'm trying to say: if the NDIS properly funded a plan—one month of borrowing a piece of equipment doesn't cut it; it takes a long time. It's like if either of you gentlemen learn a new language—it takes time. Plans need to fund communication systems and fund the time of family and support workers to learn how to use those systems properly, so the person can genuinely express choice and control which is fundamentally where we're at. Did you have any questions, otherwise I'll pass to Leticia for our next issue?

CHAIR: We'll go to Ms Grant and Ms Livingston, then we'll come back to questions.

Ms Grant : What we see in our advocacy work is that the NDIS is often inaccessible to people who are most likely eligible, such as people with intellectual disability, FASD, autism spectrum disorder and other developmental disabilities. What we observe is that, due to the working memory and executive functioning required for this level of application, planning and evidence gathering, many people are unable to participate in the eligibility access without full assistance. People are telling us there is no-one to sit with them and help them understand how to draft a plan that will ensure that their needs are met. Generic guidebooks are no help if you can barely read. The role of LACs is unclear to the participants. They tell us that they seem more able to assist once participants have a plan formulated. People tell us that they don't know what they don't know. They need to be understood. They need to build relationships for their needs and goals to be fully addressed. People don't want to hang their washing out in front of strangers and tell everyone just how badly they are coping. Parents fear the risk of perhaps having their children taken away if they tell people how hard it is to deal with the challenging behaviours they are supporting their children to live with.

We're being told repeatedly that the process of application, planning and evidence gathering is not accessible to people with disabilities. It does not provide support for those people who are unable to articulate their needs, who are isolated, who are without informal support from family who have solid capacity themselves, who are challenged by mental ill health, and who are overwhelmed by the very gravity of the process. In our position as advocates for people with intellectual and developmental disability, we see people who are endeavouring to apply to enter the NDIS, or to coordinate the rigorous process of requesting a review on the outcome of a plan which they feel is insufficiently funded for their circumstances. Frequently the professional reports and therapy recommendations have not been recognised. When they lack the funding to obtain these allied health specialist reports, it means they can't prove their need to the level required. Waiting lists for advocacy services are now so competitive that timely response for review assistance is often unavailable for participants. The whole system is so complex.

One of our examples is a young Aboriginal teen who was referred for advocacy after an appearance at the magistrates court, as it was likely apparent that this person was a person for whom an NDIS plan would be appropriate. When we contacted the local partner in the community to ask for assistance for him to access we were told that, due to the complexity of situation, he would likely be referred directly to an NDIA planner. But it was unclear who could help him or his ageing guardian aunty—who herself had such complex, disabling health issues she herself needed to apply for an NDIS plan—understand what a positive behaviour support plan was, or how funding could help him towards finding a suitable job or training and ultimately stay out of the justice system.

In another planning meeting on which I sat a young man with complex mental health distress challenges since his youth was told by the planner that his autism spectrum diagnosis—primary diagnosis—meant he was not eligible for psychology services and that for the NDIS to fund this for people with his diagnosis could put at risk the future sustainability of the scheme. To put this onus on a person who is struggling to survive each day is not a humane approach. That's the end of my statement.

CHAIR: Thank you. Ms Livingston?

Ms Livingston : Thank you. I'd just like to concur that a lot of the things that I have to say are also similar to what Leticia has just told you. I'd like to start by making the statement that in the disability sector funding has never been more of a focus. People can't even get responses from service providers unless they've got funding and a plan. People won't even respond to their phone calls. As a manager of the support coordination in DDWA, the relationship that it takes to build with a person to really fully understand what their needs are is intense. It can't happen in a 1½ hour meeting. It can't happen by reading reports. People are traumatised by having to retell their story time and time again. Families are worried about having their children taken away. Their relationships within their families are being impacted. Again, they're having to go and fight the fight, not only in the NDIS world but also in the other areas like health and education. So relationship building is imperative and taking the time to really unpack what the person needs.

The other things are informal supports. Informal supports in a person's life are so important but there's an assumption that families have capacity. There's an assumption that people do have informal supports in their lives—not all people do. Many of the people that we support are people living on their own who are isolated. They're more isolated because they're not connected to the community, which is my next point. There's not enough focus on community. It's all well and good to have the partners go and provide information to the community, but community is on a person-by-person basis to connect them to their own local community. Just providing information to a person doesn't connect them to community. So many of the people that we support are not connected to community. They've got formal supports replacing community. So there needs to be a lot of work around that. How do we bed people in their communities to have a good life so it's not just about formal supports?

My last point is that we have multiple families who have multiple people in their homes. There's one example where we're supporting a family at the moment where there are five people with a disability under the same roof. Mum has a disability and her four children. The NDIS decided to cut their funding by 50 per cent. That has had a huge impact on this family. They're more isolated. They're more stressed than they have ever been, which has impacted on their supports as far as schooling goes, as far as the health department goes. Mum's concerned that she may have the children taken away. These are just some of the things, from a support coordination point of view—and also what we're seeing in DDWA—that are coming through as daily concerns.

CHAIR: Thank you. We'll go to questions. Senator Brown.

Senator CAROL BROWN: Thank you for your evidence and your submission. I'll just note that you concur with the evidence that has been given by the former witnesses. I'm sensing quite a high level of frustration in the evidence you're giving here today and a feeling that the people you represent are actually going backwards under the NDIS. Would that be a true reflection?

Mrs Butterworth : Absolutely, yes. It's actually worse for a lot of people. There are certainly some that are going fine. But we're supporting people with high support needs and complex needs, and the system doesn't support people in this category at all well.

Senator CAROL BROWN: It appears that any consultation that's been undertaken has essentially been either one-way or in name only, because a lot of the decisions have already been made. Would that be a fair assessment?

Mrs Butterworth : Yes, absolutely; there's no question. The system generally is set up for people who can self-articulate, that have got the wherewithal to manage the system. We're concerned about all the people that simply don't have the skills, that don't have the family networks, that have multiple levels of disability and multiple social issues. The system doesn't work for them at all well, particularly if they're even trying to access a system, let alone once you get in. There's an awful lot of support. There's been discussion about downplaying support coordination, and, for people with high needs, it's just critical. Otherwise, the system will fail those individuals.

Senator CAROL BROWN: The previous minister indicated that the need for mandatory independent assessments was because of the inequity in the system. Do you believe that the pathway that's been put forward or proposed by the government will fix that problem?

Mrs Butterworth : No, not at all. As Anne said, there needs to be an issue around building relationships and understanding needs. As Anne said, there needs to be an issue around building relationships and understanding needs. If you look at the old LAC model in Western Australia, it was founded on senior staff and senior people—at all levels, really—getting to know and understand the needs of a person in order to establish what's required. That was done over weeks and months that this connection was formed. To suddenly somehow come in and do it in a couple of hours—it's just laughable; it's just not how things work.

Ms Grant : That's the same with an allied health therapist rather than a stranger—

Mrs Butterworth : Yes. It's the same with any health professional. It doesn't happen overnight; it takes time to really understand and unpack somebody's needs.

Senator CAROL BROWN: I'm assuming that your organisation would have looked at what the government wants to do in terms of mandatory independent assessments along with the other reforms that have been published in the media. What's your view on seeing both of those reforms alongside one another?

Mrs Butterworth : I'm just wanting to come back and really explore the needs of people with high needs and actually consult with organisations that do that work, such as Inclusion Australia. Our report that we were a party to—without going over it all now—there were a number of recommendations in there, which was stepping back and taking time to really understand what would work best. I don't have hours to go through it all now. But, fundamentally, what's being proposed, isn't going to be the solution. Fundamentally, it has to be based on really understanding someone's needs before you can make any recommendation about funding.

Ms Grant : It's much better to fund an occupational therapist that has worked with the person to do a full functional assessment rather than an independent, rapid assessment.

Mrs Butterworth : Yes, so it's based on someone who knows the person well. The idea of using an unknown person is fundamentally flawed. That's the problem.

Senator CAROL BROWN: We've heard from you and many organisations that have specific expertise in particular areas and have provided feedback to the NDIA and government and have provided what they see as solutions to some of the issues that have been thrown up within the NDIS, but all of them have felt that their voices have not been heard. Why is it, do you think, that government doesn't appear to be interested in listening to those people—including participants that use the system and people and organisations that are experts in the field?

Ms Grant : It would seem that the onus is more on the sustainability of the scheme—how to keep the costs at a lower level than perhaps has been experienced. I think the focus is on, 'Where can we keep costs down?' rather than 'Where can we keep people up?'

Mrs Butterworth : The focus on the funding seems to be the issue, and not focusing on the actual needs of the person. That is fundamentally the problem.

Senator CAROL BROWN: Would you see that as putting at risk the tenet of reasonable and necessary support?

Mrs Butterworth : Absolutely. The whole system was set up for people who are relatively competent and able to articulate their needs. It wasn't set up for the people who, in our mind, actually most need the service, the people with very high support needs. They're the ones that are missing out, because the families are exhausted, the people themselves don't have the skills and there is not the time—which I keep harping on about. That's fundamentally what is required. It's people who know the people, skilled health professionals who know about recommendations, so that you can actually get a joint request from the family, the person with the disability and the health professionals who know them well, to make a very reasoned kind of request around funding.

Senator STEELE-JOHN: I don't want to retread ground that we've already gone over or that was gone over by previous witnesses. I have to tell you, though, as we come to the end of our hearing today, that I'm quite concerned about the impact that the trial currently ongoing is having—or may be having or has a high potential to have—upon people that are participating in it. While you were giving your evidence, Mary, I had a text from a friend of mine who has received the offer from the agency to become part of the scheme. So people are still being inducted into this process as we meet here today. Is it your view that the trial has a very high potential to be actually doing harm to people currently?

Mrs Butterworth : Absolutely. We hear story after story. It's just damaging. There are examples of people with autism who are quite traumatised by the whole thing because they don't understand what it's about and they don't know the person. If only it could come back to them having to know the person and understand their needs. The trial, the testing process, the assessment process or whatever you like to call it is actually in itself quite flawed. There have been loads and loads of examples where it's been really damaging, because people don't understand what it's all about.

Senator STEELE-JOHN: I know we've spoken about these things in general terms, but, in terms of the accounts that members have given to you, particularly in the space that you cover with DDWA, could you give us a couple of quickfire examples of the kinds of harms that you're seeing people come to through the process?

Mrs Butterworth : It's just the assessor asking all these invasive questions that the person doesn't know the answer to. It can be that the assessor is communicating with the family and not the person with disability. This is no disrespect at all to the family, but there's a lack of focus on the person with disability. It comes back to my earlier point about communication: if the assessor is not skilled in communication, they're getting the view of the family; they're not necessarily getting the view of the person.

There are multiple areas to the assessment. If you meet somebody for an hour or two, you might happen to get them on a good day; you might happen to get them on a bad day. They might be so stressed about the assessment that's coming up that their behaviour might not be what it normally is. To think that you would get a realistic picture of somebody, a snapshot, that's a fair indication—it's just not reality; it's la-la-land stuff.

Senator STEELE-JOHN: The minister has announced a pause in the legislative implementation, but the trial itself is still ongoing. Based on your experience and the evidence you've heard from other individuals today, with which you have agreed, do you think, applying the precautionary principle at the very least, that what we should do at this moment is halt the trial itself?

Mrs Butterworth : That's a great idea. I absolutely 100 per cent agree. It's doing damage. For somebody who's got the wherewithal to understand the system—they've got a physical disability and they can cope with the system—fine; but for people with a developmental disability such as ID or autism, the system is not set up for them. This assessment system and the system generally is not set up for them.

Senator STEELE-JOHN: Mr Wallace has joined us again since the other folks gave their evidence. Just so there's a shared committee understanding, it's your view, isn't it, that it would be inappropriate for physios, social workers or other people who are not qualified to apply the tools that are being proposed to be used in this kit to these particular cohorts of people?

Mrs Butterworth : Whether they're qualified or not, it's more that they're inappropriate. What they're being used for was never their intended purpose. If we're going to design some sort of assessment tool, or going to work out some way of making the system equitable, we need to develop something from scratch that is designed for the NDIS purpose, not some other purpose.

Senator STEELE-JOHN: From your perspective as DDWA, do you also agree that, even if the tool was fit for purpose, an assessment of functional capacity is only half of the story of somebody's support needs because of the environmental, community and contextual factors—for example, somebody living in regional Australia is different from metro et cetera?

Mrs Butterworth : It would only be one small part of a bigger picture. It's all of those things you just mentioned, plus the tool. The tool is a partial indicator for what is needed. Hence, to go back to the old LAC model that used to be in Western Australia, that was a much more humanistic model of assessment, where it was done over a period of time. You need time and multiple inputs. It could be a little test, but it could be reports from therapists; it could be information from the family. More importantly, it could be information from the person with disability themselves. You then have this collective array of information that informs the decision, not just one little assessment on one particular day.

Senator STEELE-JOHN: Alright. Thanks very much. I appreciate your time.

CHAIR: Mrs Butterworth, Ms Livingston and Ms Grant, thank you very much for your submission and thank you for sharing your thoughts—

Mr WALLACE: Chair, may I ask one quick question?

CHAIR: Sorry, yes.

Mr WALLACE: Thank you very much, ladies, for your evidence. Could I play devil's advocate a little bit with you for one quick question. I respect your opinion, of course. But there was a pilot study, a survey, which sent out 513 requests to participants. One hundred and forty-five people completed the survey. Of the 145 survey respondents, 91 per cent reported being satisfied or very satisfied, 99 per cent considered their assessor to be professional and 72 per cent felt that their assessor was familiar with their disability.

Mrs Butterworth : You said there were 500-odd surveyed, and 100-odd responded. So, the question is about the other 350-odd who didn't respond and—

Mr WALLACE: Normally, in my experience, in my extensive five-year parliamentary career—and I say that tongue in cheek!—people aren't usually backward in coming forward when they've got a complaint about something.

Mrs Butterworth : I suppose what I'm saying is that people with very high support needs don't get surveys. They don't necessarily have computers. They're so tired, worn out and knackered that they can't even be bothered filling out yet another survey. They get hundreds. People with disabilities are the most surveyed community in the whole world, I think. So, they're over it. The families that we're dealing with are trying to stay alive and just function. They're not going to be worried about some silly survey. So, I'm sorry, but—

Ms Grant : And I would like to add to that that these people completed that 'How did we rate?' survey before they saw the outcomes of the assessments. You may find that if they read the outcomes they would say, 'That is not me.' That's like asking me, before I go into the movie, 'Did you like Titanic?'

Mr WALLACE: Thank you.

CHAIR: Thank you for your submission and thank you for discussing it with us today.