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Joint Standing Committee on the National Disability Insurance Scheme

COATES, Mr Paul, Chief Executive Officer, Carers WA

MITCHELL, Ms Felicity, Systemic Policy Officer, Carers WA

Evidence was taken via teleconference—


CHAIR: I welcome Mr Coates and Ms Mitchell from Carers WA to this teleconference today. Information on procedural rules governing public hearings has been provided to you and is also available from the secretariat. In addition to me, Kevin Andrews, we also have online the deputy chair, Senator Brown; Ms Coker; Mr Wallace; Senators Hughes and Askew; Ms Payne; and Senator Steele-John. I invite you to make some opening comments.

Mr Coates : I'm going to pass over to Felicity to make the comments. Felicity's done some quite detailed work in this area. I think it's appropriate that she makes the opening comments. Over to you, Felicity.

Ms Mitchell : Thanks, Paul. And thank you for the opportunity to give evidence to this committee. Carers WA supports and advocates for unpaid carers in Western Australia. We believe WA carers welcome the NDIS principles of choice and control, individualised planning and lifelong support. The scheme has the potential to improve the lives of people with disability and to further facilitate their inclusion in their communities, and it has already done so. WA is in a unique position, as you know, as the last state to transition to the NDIS, and, while the transition was due to be completed in 2020, we've had several delays. It's expected that there will be 43,000 participants in WA at full scheme; at the moment, we're at 27,000 participants.

Our comments today concentrate specifically on the main concerns of carers from their experience with the NDIS system. The first issue is around access. The process to gain access to the NDIS requires significant time, knowledge and cost. This work often falls to carers and is in addition to the work they already undertake to assist the person they care for. Carers report there is very little support to prepare the documentation needed for an access request, and the process can be confusing and stressful, as I think your last witness mentioned. The LAC partners in the community have a role in supporting people with access requests, but in practice they're merely providing web links and booklets rather than advice and guidance. So further one-on-one support is required.

The second issue is around the planning cycle, and I think it's been well canvassed in other submissions. Once an access request has been successful, the participant and/or their carer enters the NDIS planning cycle. This cycle is intensive and requires considerable preparation. Carers report that there's little support for preplanning for the initial planning meeting with the NDIA. In order to obtain the funding required, the person with disability and/or their carer needs to present a clear picture of ongoing needs for daily care, therapy, community participation, assistive technology and home modifications, along with draft goals—in the correct language—to fit these needs. And then they need to back these up with assessments and reports from health professionals. A lack of extensive preplanning may result in an inadequate plan. Again, the LAC partners have a role in assisting with preplanning, but carers report that this is not being delivered adequately. And this process happens for carers and people with disability every year, as you know.

The third issue is that carers report that, if a child or adult lives at home with parent carers, the NDIS tends to rely on informal support. Often, plans don't provide the allocation of funding required for people with disability to spend time in the community, independent of their families, and therefore carers can't access a break from their caring role. The consequence of this reliance on informal support can be that carers become burnt out and, in some cases, aren't able to provide care any longer. The NDIA has acknowledged this issue and reintroduced the term 'respite' into the NDIS price guide, but we think more needs to be done to ensure that carers are supported, along with participants.

An issue of specific relevance to Western Australia is the thin markets in service provision. The NDIS is predicated on choice and control, but this can't be utilised if service providers are not available to provide specific and relevant supports. There is a lack of personal care workers, allied health professionals and support coordinators in the metro area but particularly in regional areas. For example, carers have reported that there's only one support coordinator working in the Northam area, and other people have told us that it's difficult to find personal care workers just outside of Bunbury, which is a large regional hub. We acknowledge the work already done on this issue by the NDIA, but it's still a significant issue for WA and, obviously, is further exacerbated in remote regional communities in our north.

The last issue we wish to raise is one that's been discussed frequently by the committee, and that's the review process for plans. It's a significant area of stress for carers. The review process can go on for many months, and this puts an enormous amount of pressure on carers while they wait for outcomes. During the time taken to review plans, the person with disability can be left without funding support. We note that this committee has made a number of recommendations around the review process, including the provision of draft plans to participants and families to minimise the incidence of a review being required, but, unfortunately, people are still not seeing draft plans.

Carers WA works closely with many disability advocacy groups in WA. Along with them, we appreciate the continued work of the Joint Standing Committee on the NDIS and the efforts taken to consult in WA. We'd be happy to take questions on the points raised or any other issues relevant to carers. Thank you.

CHAIR: Thanks, Ms Mitchell. Have these issues been exacerbated or remained similar with the COVID-19 challenges?

Mr Coates : It's hard to tell. You can make judgements, but there's no real research or evaluation being undertaken at the moment. All we can go by is what we hear from phone calls and hearsay. It has increased anxiety. The groups that are vulnerable continue to be vulnerable, and a bit more so, in the COVID environment. I don't think we can blame the COVID environment for some of the issues we need to address in the system itself.

Senator CAROL BROWN: Thanks, Mr Coates and Ms Mitchell, for appearing here today. I just wanted to go back to a point Ms Mitchell made about the lack of support for access requests and subsequent lack of support for pre-planning. What recommendations would Carers WA like to make to support participants?

Mr Coates : I think there needs to be a real focus and understanding on pre-planning. I've been dealing with a family living in the south of the state who actually had assistance set up for a number of years like the NDIS, with their own company and their own management of the position of the son in the family. There's obviously anxiety about these changes. They were fully expecting, having been quite long established in this sort of process pre the NDIS system, that they were in a good position. But they felt that they didn't have any pre-planning at all; they went straight into a draft plan in answer. I think it's all about making sure the process of pre-planning is fully followed through, particularly where there are complex cases. I don't know if you've got anything else you want to add, Felicity?

Ms Mitchell : I would just say that many carers have told us that they think they require one-on-one support for that pre-planning rather than generic information sessions provided.

Senator CAROL BROWN: Have there been any reports where carers or participants want somebody to come along with them and it hasn't been accommodated?

Ms Mitchell : No, I don't think so. I think the system of nominees is working reasonably well.

Senator CAROL BROWN: You also talked about services. How are services and support being accessed? By that I mean: are there services and supports that people have in their plans that are not available?

Mr Coates : I think once you get outside Perth and the main regional centres the market gets thinner and thinner. WA, as you know, is an extremely large geographical area with a spread of regional and remote communities. So once you get beyond the regional centres and Perth availability does get less and less.

Senator CAROL BROWN: In terms of thin markets, as I understand it, we still haven't got a clear direction as to how those issues are going to be resolved. Is there also an issue around adequate communication with participants?

Mr Coates : I think there is, but it's easy to talk about thin markets and regional and remote areas and lack of availability of services; that's no news. The question is: what can you do about it? Perhaps the system could relax its processes more and maybe make use of service providers who are out there already. There may be an aged-care service provider or a mental health service provider quite active in the area who is not a registered NDIS provider. Perhaps there could be some bringing together and utilising of those sorts of organisations as a mechanism in the process. I don't think a lot of that has been thought about and done. If you're in a remote area and there happens to be an organisation that happens to be a mental health organisation, perhaps it's engaging more significantly with the organisation and trying to bring them into the process, allowing for the fact that the process may not be quite as rigorous or following the procedures as it would be if it's in a main city.

Ms COKER: I'm interested to ask about respite for carers. In Victoria, even today, I've heard complaints about lack of opportunity for respite. Is that an issue for carers in WA? If so, what is being done to support carers?

Mr Coates : Respite is one of the most valued services of carers, particularly when there's a significantly challenging caring role. Once again, it depends on whether you're talking about respite as in somebody coming to the home or the person being cared for going into some sort of facility that is actually providing replacement care. That is provided for in the new Carers Gateway program, certainly—both emergency respite and planned care respite, to a certain level, depending on what the funding rules allow. With the COVID environment, respite facilities at residential homes were locking down. And, with in-home support, people are reluctant to bring a stranger into their home because of the risk of cross-infection. That is all beginning to ease a bit now. But, as with other services, the availability of respite services gets harder and harder as you get to more regional and remote areas. Once again, it's the same issue.

Ms COKER: Is the NDIS adequately supporting carers by giving participants opportunities to take respite on a regular basis, and are there the respite facilities to enable it to occur?

Mr Coates : Whether there are respite facilities to enable it to occur depends on where you live. But I do not think the program itself has that much of a focus on carers and providing respite for carers, in all honesty. So if carers want respite they would have to engage with the new system, the Carer Gateway program. I think a lot more could be done to bring carers to the fore and recognise that the scheme is about independence, choice and control—the quality of life for the person with disability. I think there has been a lesson right from the beginning of the development of the NDIS and those early days of campaigning, where it was all about having a new system which was going to improve the lives of people with disability. In a way, some of the early thinking was that carers and family members would become almost redundant. But then the reality kicked in that the extent of the role that families play, particularly with people with severe intellectual disability, isn't going to abate at all with this new system. There has been a growing recognition that carers are an integral part of the NDIS, and need to be because they're a significant form of support. Even if one has a great plan and is well funded, that often can have an impact on creating more tasks and work for the family members to support that life. So there needs to be far greater recognition so that carers and things like respite do get included in the plan. Understandably, with a system that is predicated on the individual and choice and control, that issue is much less likely to come up in the processes that we have at the moment.

Mr WALLACE: Thank you for your evidence today and also for the work that you do. I am the parent of a child who lives with a disability, but my wife understands respite much better than I do. I get to come to work; that's my respite. Following on from what Ms Coker said, I'd like to talk to you in a little bit more detail about the respite issue. What specific things do you think the NDIA could provide in its system to better provide respite for families? And could you please be specific rather than general.

Mr Coates : I think the planning process itself could have more emphasis and definite flags to ask the question. With the greatest of respect, if a plan has been prepared for somebody with a severe intellectual disability, it is unlikely that the topic of giving respite and a break to the parents or whoever the carer might be—unless someone raises that as a topic—so it is down to the planner or the family speaking up for themselves. Often the family won't speak up for themselves because, understandably and rightly, they are focusing on their family member to get the supports for them. So I think it's got to be a fixed question, and an encouragement for the planners and the family to think that through during the planning process.

Mr WALLACE: With WA being so late to the party, you may not be able to answer this question. In the experience of the committee, early on, respite was almost a dirty word. The NDIA didn't want to know about respite, because respite is for the family not for the participant. Do you want to comment on that at all?

Mr Coates : You're right. There are lots of words that are used in different sectors which are acceptable in some sectors but not in others. Respite is a dirty word—it was used in that way—because the connotation was that it was an opportunity for the person to escape, to get away from the person they are caring for. Sometimes we need to look beyond the words and meanings and political correctness on these things and just look at the situation of the family. It has gone full circle: it is becoming more and more accepted now that it's a necessary reality, and whatever you label it shouldn't matter.

Mr WALLACE: The experience of Carers Queensland is that NDIA will entertain funding for respite for families. But what I have seen in the past is that if you use the word 'respite' there is almost a guaranteed no; but if you use another descriptor for it then they would entertain it.

Mr Coates : That's right, and that's what I mean: we need to get beyond the political correctness of words. In Queensland, you're actually lucky because the LAC process is run by Carers Queensland to a fair old extent. You've actually got people in the know there, who are a bit more aware of that as an issue.

Senator HUGHES: I wanted to cover a couple of things with you. Some of the things you've said from a WA perspective really aren't that unique to WA, in the sense that rural and regional communities have pre-existing markets across the country, and looking for support workers even in areas such a Sydney is not particularly easy. Could you cover off for us what you think are the barriers to entry to the workforce, and why we experience this shortage of workers. Some of the roles need to be undertaken. Like Mr Wallace, I'm also the parent of a child with a disability. Some of the assistance can be funded through the NDIS is not high-skilled, yet even trying to find those sorts of workers is very, very difficult. What do you think some of the barriers to entry are with this workforce?

Mr Coates : I get what you're saying—that they might not be high technical skills—but there are certainly skills that are needed which people don't automatically have, although you'd they would. Those are empathy and a desire to work in that sector. It is challenging. It's not quite nine-to-five type work, because you're dealing with a lot of emotional issues which, with the best will in the world, you can potentially take home with you and think about through the night. I guess the barriers are pay, availability of staff on those regional areas anyway, and it probably needs some form of campaign and some training and recognition and respect for these roles, even if they are not highly technical roles, to make it a more popular, acceptable and understandable profession. In WA—again, we claim to be a unique but I don't think we're always that unique—we do have quite a strong mining community. When people go out to work in the regions, fly-in fly-out, they get paid a hell of a lot more money for doing actually quite low-skill tasks in some cases. They get a lot more money than they would in a caring role for a disability organisation.

Senator HUGHES: Does WA have access to disability employment platforms like Hireup and Mable that are opening up the marketplace and allowing people to enter the marketplace as workers?

Ms Mitchell : Yes, we do. I believe Mable is quite a popular one in WA.

Senator HUGHES: There are some things you find that not everyone within the disability community is aware of them. Ms Mitchell, I think you mentioned something with regards to people not having funding when they're going through reviews?

Ms Mitchell : Yes, if there is a gap in plans and one plan finishes during the review—

Senator HUGHES: So you mean when there's a gap?

Ms Mitchell : Yes.

Senator HUGHES: That's fine. Obviously if you have a plan and you're going for a review, even though you might be having a look at your plan being redone, the money that is allocated can still be accessed during that review period. We wouldn't want people to not be using the plan that they're given, even if it is under review.

Ms Mitchell : No. The other thing is that we've heard of situations where, if you're reviewing the first plan, there is no funding in that period of time.

Senator HUGHES: We need to be careful with some of that, because sometimes I think we hear anecdotes and hypotheticals that aren't actually what should be happening. When we talk about utilising non-registered providers—and I agree with you that that is actually a very good way of expanding some of the markets in rural and regional areas—what are the sorts of volumes of people and what is your engagement with carers, particularly with families that have the ability to self-manage their plans or use a plan manager? Because, obviously, if they self-manage or they use a plan manager, they have the ability to use non-registered providers. Are you finding that there's a pushback from the NDIA about using self-management or plan management, and that they are trying to encourage agency management? Because it's only agency managed people that have to use registered providers.

Mr Coates : I don't know whether there is a pushback or not, to be honest. I'm not sure we have the evidence to say that categorically. But, certainly, I know they would encourage people to use registered providers for all sorts of reasons—governance reasons and even for family reasons as well. You find a lot of families where the carers who are getting aged, quite significantly aged, and the person they're carrying for is getting into their 20s and 30s and even 40s. So the NDIA is concerned about them—their ability to help in that management process is becoming less and less. So, in those sorts of cases, I'm sure there would be a push to encourage them to utilise registered providers and have the plans managed by a service provider. I know families in that situation, and it is a bit of a tear for them; they've spent a lot of their life managing the process and all of a sudden they realise the reality is that they can't. But we've got no evidence and we've done no study of it to say that this is a common trait.

Senator HUGHES: As I said, I'm in Sydney and I self-manage, and I wouldn't be able to hire the people that I've got if I only used registered providers. The therapist that we've had for seven or eight years is the sole provider and is unregistered. We used to live in a very remote area, so I am very familiar with thin markets in remote areas. I want to make sure that families are at least encouraged or given the right information, because a lot of families, particularly with young children with a disability. are in a position where they can self-manage and work with a plan manager. They can get a little bit more creative with accessing services and providers outside the big providers, who do tend to be very prescriptive in what they deliver and do tend to have much higher administrative overheads so, therefore, their fees tend to be at the higher end. What their workers get paid tends to be at the lower end. It certainly gives you more scope, using some of these other smaller providers.

Mr Coates : I certainly think the LACs and those are probably more reticent when people want to go down there than with a registered provider.

Senator HUGHES: That is enough for me. Thank you.

Ms PAYNE: Thank you for your evidence today. I just want to ask about young carers, in particular, and how they are faring at the moment with the NDIS in WA.

Mr Coates : I actually don't have a lot of information on that, to be honest. The majority of people we are dealing with tend to be older and have direct issues which are brought to our attention. On young carers' issues, the sorts of things they're facing include managing the care involved and managing the live education aspects of it—keeping that up. There's not a lot more I can say on that.

Ms PAYNE: No worries. That's all from me.

Senator STEELE-JOHN: Thank you for your evidence to this point. I just want to take you to the broader financial context that carers have been experiencing, particularly with COVID-19. How would you describe the financial struggles that carers are facing at the moment? Do you hear reports of it being quite a challenge at this moment in time?

Mr Coates : Yes, we do. The thing about carers is that it's a large and diverse population so there are obviously a whole range of issues. You can categorise them. Carers are struggling with it no more than other members of the community are, to be honest, because they're the same issues, such as job loss and that sort of thing where there's a working member in the family.

In the new Carer Gateway, we negotiated with the DSS who will fund that program. They have been pretty good and allowed a degree of flexibility in things like the carer directed packages, which will give a bit more flexibility on what the money can be spent on to support carers. Obviously, those sorts of things are relatively small and don't resolve the issue of employment and loss of income and that sort of thing.

It's typically a family experience, like many other families that are not in a caring role. It's loss of employment. There are all the additional costs of caring, which are added on and you've got to find and cover them, which is getting harder and harder to address. Plus, in some cases, it's even the availability of some things that carers need, being able to access the sorts of things that they need in the early days of COVID. Obviously, in WA at the moment we're probably in a far better position than a lot of other places, and things are a bit more normal than in other states and territories.

Senator STEELE-JOHN: What have the reactions been like among the community to things like not receiving the COVID supplement and those other issues?

Ms Mitchell : We have had some comments from carers about that. I'm not sure if you're aware, but there has been a survey done by Caring Fairly. There are some stats in there. They are national stats, not WA stats. Apparently 37 per cent of carers have lost some or all of their regular income, and 37 per cent of carers worked fewer hours to provide extra support for the person they care for. Most of the comments we've had from carers is that they struggle in finding services for the person they care for.

Senator STEELE-JOHN: I hear quite often that it is still the case that many carers still feel totally bamboozled by the complexity of the NDIS and really struggle to access the information that they need to understand the implications of the scheme for either themselves or the people they care for. Is that still a lot of what you hear from the people who talk with you?

Mr Coates : Again, it's a diverse and wide population. What comes with that is a whole range of abilities and understanding and ability to understand things like government systems. We still certainly hear this about the NDIS. We also hear it about aged care, for that matter, in working with the aged-care packages there. Agencies and government will rightly say, 'We've got lots of information on our website [inaudible]' and this sort of thing, and that's true, but a lot of people who are engaging in these systems, and the NDIS is one of them, really need to be handheld and carried through it. Yes, I know there are written words on a website, but they need more to understand what a plan is and what its implications are. How many people before this system have engaged in developing a care and life plan for an individual, understanding what it is, what it contains and what they can and can't ask for within that plan?

Senator STEELE-JOHN: Absolutely.

Mr Coates : It's not a simple process. I'm not sure how much simpler you can make it, because it is quite complex in people's lives and with the range of supports and circumstances. You just need somebody with experience to do a lot more handholding.

Senator STEELE-JOHN: I hear that. Finally, you guys have been on the frontline, supporting carers through what has been a pretty complex transition in WA for a while now. In terms of recommendations that we could take back as a committee and implement, is there anything that you don't feel you have been able to covers so far and that you would like to flag with us?

Ms Mitchell : I think just reiterating that point about one-on-one support. We have an individual advocate at Carers WA who has reported that she is spending a lot of time hand-holding people through planning processes, the recommendations around further one-on-one support for pre-planning and annual planning.

Mr Coates : And I think what you've got to realise is there is a tension here. You'll get these companies, organisations or LACs and they are under pressure to deliver volumes. They want to go through a process and churn out plan after plan so they can meet their contractual requirements and volumes. Taking one gently through one-on-one support will not get you those volumes. So I guess my recommendation, added to that, would be to rethink the expectation of volumes.

It's as I've said to departments during COVID, when they've said: 'What can we do to help?' Perhaps they should remove less of the pressure in bureaucracy on achieving contractual volumes, less attention on that for the time being, during that COVID period. Perhaps it's the same attitude we could adopt here, that contracting agencies and offices within the contracting sections be not so focused on doing 4,000 plans under the contractual obligations. If they've only done 2,000 but they've done 2,000 quality plans and there's a bit of a waitlist, maybe that's a change in mentality and approach that the agency and government need to adopt.

Senator STEELE-JOHN: I suppose that comes back to the issue of the staffing cap and the impact that's had on the agency. Do you think it would improve your experience with the scheme, and the experience with the scheme of the people you speak for, if there were the capacity to employ more people in the agency to do this work, instead of LACs and the various ways that we do it at the moment?

Mr Coates : Absolutely. If you get more people into it you're going to end up getting better results, providing they're of a good quality and they're properly trained. But it is a mentality thing. If organisations are not worried about being penalised for lower volumes of output and that sort of thing, and there's trust between the contractor and the service provider, that might help the situation as well. That's something that shouldn't be a high-cost thing at all. It will change that contractor relationship in trust and understanding.

CHAIR: Thank you, Mr Coates and Ms Mitchell. We appreciate you coming online today to discuss the NDIS with us. It's been helpful in our ongoing inquiry, so thank you very much for your contributions.

Ms Mitchell : Thank you.

Mr Coates : Thank you very much for the opportunity.