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Community Affairs References Committee
Palliative care in Australia

ANGLEY, Ms Philippa, National Policy Manager, National Disability Services

BAKER, Dr Ken, Chief Executive, National Disability Services


CHAIR: I welcome the representatives from National Disability Services to today's hearing. I know you, Dr Baker, certainly know the process here fairly well. I am sure you have been given information on parliamentary privilege and the protection of witnesses and evidence. I invite one or both of you to make an opening statement and then we will ask you some questions.

Dr Baker : Thank you, Chair, and thank you for the opportunity to meet with the committee. NDS, National Disability Services, represents specialist disability services, over 700 organisations, around Australia. At the same time, we have a strong interest in improving the interface between the specialist disability services system and neighbouring systems such as health and aged care, knowing that if that interface functions poorly—as I think it often does—people with disability are disadvantaged.

Among the members of National Disability Services, palliative care issues are particularly acute for providers of accommodation support, particularly group homes. The residents of group homes often have a significant intellectual disability and sometimes a severe communication impairment which can make it difficult for them to communicate with palliative care professionals and difficult for palliative care professionals to understand their symptoms, their wishes and their experiences. There is, moreover, some confusion that we have discovered among both palliative care professionals and disability support services about the eligibility of people, people in group homes in particular, for palliative care services. The key, in our view, to improving the situation lies in strengthening partnerships between palliative care providers and disability organisations. There tends to be an assumption that, if a person is in a group home, all their needs are catered for by the specialist disability services system, and that is untrue.

Our submission points to a successful project in Victoria which resulted in the production of the Disability residential services palliative care guide. This guide takes the reader through the key areas for support and identifies a range of resources, documents and training available and where to find them. We recommend that other states and territories implement similar programs and develop resources to assist people, particularly those with intellectual or cognitive disability, with palliative care and the associated grief and loss that those around them often experience. The National Palliative Care Program, which the Australian government funds at a modest level, could provide such materials as well; that is within its scope—to raise understanding and awareness of palliative care. So that is a possible source of resources to improve the awareness and understanding of this stage of life as it impacts on people with disability.

In our view, the recommendations we have put in our submission are broadly consistent with the National Palliative Care Strategy 2010, which does acknowledge that people with disabilities are one of the populations that could be experiencing unmet need for palliative care. That strategy, as you are probably aware, identifies four goal areas: awareness and understanding; appropriateness and effectiveness, including the development of more integrative, coordinated models of palliative care; leadership and governance; and capacity and capability, which would include more flexible funding models. We see flexibility as a key to funding this form of support, along with working with the national Community Services and Health Industry Skills Council to ensure that the training packages for providers of disability support include competencies related to palliative care. So that strategy, I think, is broadly consistent with our recommendations, but we think it could give a higher recognition or profile to disability.

In summary, among the measures that we think would help people with disability get better access to palliative care are, firstly, funding that, as I mentioned, is flexible—for example, it would recognise that there is an additional cost in staffing a group home if a person cannot leave the home during the day because they are at a stage of life that requires palliative care. Most of the staffing models for group homes do not include support during the day. It may include specialist equipment as well, so a hydraulic bed may be required. It may include access to information in a form that people with a disability and particularly those with cognitive impairment can understand. There is a good example of a resource produced in Victoria by Scope Victoria which is providing information to people in easy English around grief and loss. It may include some reciprocal training, meaning training both for palliative care workers around disability awareness and for disability support workers in relation to palliative care. Finally, we think there are potential advantages in the electronic health record in enabling people's support plans and so on to be tracked in relation to palliative care.

Senator MOORE: Dr Baker, you talked about the two programs that were positive in Victoria. It seems to me to be one of those confronting things that these are two areas where really good work has been done and you describe it in your submission as working with people through the loss of someone in a group home and how you handle that, which is an amazingly difficult thing to manage. Work has been done, people have looked at it and everyone has said this is a good thing, but it has not been shared or taken up. And it was the same with the Scope project, which I would imagine would have been happening at the same time. They seem to be in the same space. Are they part of the same overall plain English, easy-to-read stuff? It seems to me that they would be part of the same kind of program. I do not know. I have not seen the process.

Ms Angley : No, they were done at slightly different times.

Senator MOORE: Isn't it a funny thing? They are doing this good work in the area. I have not seen them but you referred to the quality of them. What do we have to do to ensure that when something that has been identified by the group and seen as a need and we find a solution to is shared?

Dr Baker : I am wondering whether the National Palliative Care Program which the Australian government funds—it is modestly funded—is an opportunity to provide that awareness raising and coordination of approaches. Where it identifies good practice in one jurisdiction that program might then take an active role in disseminating the information and encouraging its uptake in other jurisdictions.

Senator MOORE: The government mentioned in their submission the central repository of literature that is on the internet, which seems to be the place where any literature on the issue of palliative care is held. That could be a focal point when any organisation or jurisdiction has come up with something positive and is proud enough to tell people about it and say, 'This is why we did it and this is how we did it,' and it could go up on that. That would lead to that process. But you are suggesting—and I agree—something even more positive and directional and saying in the areas of people with disabilities and palliative care this program is one that should be considered and the national group should take that leadership.

Dr Baker : I think it needs a more active approach just because there is a disconnect at present between the disability services system and the organisations and people who provide within that and health and aged care. I think this disconnect falls on both sides. That is why I think it requires active bridging. I assume most of our members would not know about that repository, for example.

Senator MOORE: Which still makes you wonder why the disabilities network—and I am being parochial—in Queensland have not actively said, knowing what their partners in Victoria are doing, to the Queensland government, 'Hey, we want this in Queensland.' To the best of my knowledge—and I certainly have not heard of it—they have not said it. It seems to me to be one of those awful, bleedingly obvious things.

Senator FIERRAVANTI-WELLS: Can I take that little bit further, Dr Baker. Obviously the National Palliative Care Program in the department's submission impacts on access to and quality of palliative care. It seems now they provide support, they do education et cetera, but where in this space is there an assessment of what works and what does not work? We talked about this in mental health and raised it in the context of the National Mental Health Commission. But it seems to me that there is not that similar scope in anything that is in the palliative care space. Is that a correct assessment? And where could you see that happening? Is it something for Palliative Care Australia to be able to do at least an assessment of what is working and what is not rather than just churning the information? I do not mean churning it in a negative sense but just being the distributor of information.

Dr Baker : That may be a role for Palliative Care Australia if they work with the comparable bodies such as NDS in other sectors.

Senator FIERRAVANTI-WELLS: But there is obviously a gap there of an assessment. We could have good things happening around the countryside but nowhere where it is actually going to be assessed as what is working and what is not going to work.

Senator MOORE: Anything that is government funded goes through the review process, which is an internal government review, but there is the question of wider assessment and clean consultation. Dr Baker, in terms of the guidelines that have been written for both community care and palliative care, and they are about to do a consulting program on guidelines for palliative care in residential care, is that something your organisation would have more interest in? The submission indicates that as people are ageing more with disability, people have really got to look at the issues more clearly. My understanding from this morning is that the department said that the guidelines for palliative care in residential institutions are now going to be subject to review. They were last reviewed in 2006 and they will be going out for public consultation in the next couple of months, I think she said. Is that the kind of thing that your organisation would now be more inclined to consider being involved in that it would have, say, 10 years ago, in whatever the previous guise of NDS was under a different name?

Dr Baker : These are the guidelines that relate to residential aged care.

Senator MOORE: Yes.

Dr Baker : I think we should take an interest in that, yes.

Senator MOORE: And to remind the department and Palliative Care Australia that they should be seeking your advice as well in building those links.

Dr Baker : Yes, I think that makes sense. As you pointed out, people with lifelong disabilities are ageing, but also we know that as the general population ages the prevalence of disability grows. It is somewhat artificial to be looking at a simple division as if being old with a disability is somehow different from having a disability and being old.

Senator MOORE: That is very true. You say that advance care planning should not be ignored for people with disability and their families. The discussion about advanced care planning has been going on more publicly now for about the last five years. Do you think that people with disability and their families have been ignored in the discussion until now?

Dr Baker : I think they have not been adequately engaged in that discussion at all. There are particular issues for them which may require extra time and extra effort and they are issues that arise from the sorts of things I have talked about already. If we think about people with severe communication impairment or cognitive impairment, the process of developing an advance care plan is probably going to take longer and is going to require material specially developed for them in forms that they can understand and access.

Senator MOORE: Certainly one of the general views of the evidence that we have had is that there needs to be some consistency and wider educational knowledge about the way advanced care planning operates. That has come up everywhere. We need to take account more clearly people with communication issues, so that when you are planning awareness you have to take that into account.

Dr Baker : Yes, I think that is right. There would be general information, but it would need to be tailored for specific population groups.

CHAIR: We actually need that campaign work. Alzheimers Australia is making that really strong point about working with people with dementia. Then we have got disabilities, cultural issues, which take in cultural and language, so we really need a targeted campaign for different sections of the community.

Dr Baker : Yes, I agree.

Senator MOORE: There is the concern that people have about getting informed choice from someone with a disability with whom it is difficult to communicate. How do we work through that? It has already been raised today with people with Alzheimer's developing into severe dementia, being absolutely certain at the point of time that someone says, 'This is what I want.' It is a clear decision. How can the system change? It has to, because it has not grappled effectively with this issue. How can the system change to ensure that people with disabilities are given the respect that they can tell you what they want?

Dr Baker : I think this is a very important question. It has application much broader than just palliative care, because increasingly one of the key trends in disability support is towards increased choice and control by people with disability and their families, which is a good trend. But it does mean that there are particular challenges for people who have profound communication difficulties or intellectual difficulties. If choice is to be meaningful for them, there needs to be specialist support provided. There are ways of doing this. Organisations like Scope in Victoria have both done research and developed training materials in relation to that. It can be done, but it takes time and it takes a lot of careful design to do it well.

Senator FIERRAVANTI-WELLS: Senator Siewert asked about the campaign. Just following on on that, can any national campaign on palliative care and these issues work generally or does it need to be more specific in terms of how it is targeted towards the disability sector, how it is targeted towards the aged care? Dr Baker or Ms Angley, are we talking about four or five different components of the same sort of theme, but different aspects to it? Do you understand?

Dr Baker : Yes, I understand. My view is that there would be general information that would be provided, but it would need to be provided in forms and with emphases for different population groups.

Senator FIERRAVANTI-WELLS: In the end, television is that important medium that comes into people's lounge rooms. Are we really only going to break the stigma, if I can put it out there, in terms of people's thinking with a fairly direct campaign into their living rooms? We can do internet, we can do all those other sort of things, but it is really those mediums like TV—is that really what we are thinking about?

Dr Baker : I think multiple channels of communication are important. If we are thinking about potentially marginalised groups like people with communication impairment and intellectual disability, we need to go to the people whom they are going to trust and listen to. In some cases they will be the service provider; in other cases, they will be parents, family members or other contacts in the community. But I think that is a key thing. They need to receive information from people whom they trust.

Senator FIERRAVANTI-WELLS: But isn't part of this also destigmatising the general view in the community so it is not just for those people who are directly affected but actually more than that—more of a general awareness of this issue? It may not be something that I would think of now because I have pressing needs; it might be something that starts conditioning me to think along those lines. It may not be for now. They are just some thoughts.

Dr Baker : It is not an easy issue because you are dealing with a topic which is surrounded by taboos and great sensitivities, and you need to ensure that the message is such that people do not simply resist them and not want to hear them. I am not a communication expert.

Senator FIERRAVANTI-WELLS: Do we have copies of these two studies that you have mentioned or will the secretary—

CHAIR: We can get them, yes.

Senator FIERRAVANTI-WELLS: I think it would be worthwhile if we could get them so that, whilst you have made some general comments in relation to it, we could have them on the record.

Dr Baker : Sure. I am happy to do that.

Senator FIERRAVANTI-WELLS: Thank you, Madam Chair.

CHAIR: So you will send them?

Dr Baker : Yes. I will certainly do that.

CHAIR: Okay. That would be great. I want to go firstly into issues around HACC. I have been asking all day about HACC services, and you make some references to HACC. Should I take it from the comments you have made in your submission that you think there needs to be more emphasis on HACC for access for palliative care? You make the comments in terms of rural services.

Dr Baker : Yes.

CHAIR: I am sort of expanding that out a bit to ask a bit more generally.

Dr Baker : I think in rural services there is often quite an ad hoc approach to constructing whatever package of supports is available from wherever it can be drawn. It is probably not a usual function of HACC to provide this, but in rural areas organisations often have to be very innovative as to how they put together support for people.

CHAIR: A number of submissions have made comment about not being able to access HACC services, so I am trying to look at it—

Dr Baker : There has been a longstanding barrier to people in group homes accessing any HACC support whatsoever. There is a commitment in the National Disability Agreement to resolve that barrier and perhaps the National Healthcare Agreement may assist in doing that. This is an example of where there are a range of HACC services that are available to the people in the general community that are not available to people in group homes. The assumption is that people in group homes can get everything they need through the specialist disability service system. It is not true and it disadvantages people with disability.

CHAIR: Do you know how much progress they have made through the agreement to actually resolving that—to meeting the commitment that they will resolve it? How much progress have they made?

Dr Baker : The changes are being implemented in stages. Not all states have signed up to it—for example, Victoria has not signed up to that change. There is a commitment that current service arrangements will continue until 2015 and then they will be reviewed.

CHAIR: So it is part of developing through the transition process and then it happens. You talked a lot in your submission about access in rural areas and I take it that is because—and you just touched on it then—it is patchy and because it is even harder in rural areas to access palliative care and disability services as well. You made a number of recommendations. You talk about the GP's role and the fact that appears to have been declining rather than increasing.

Dr Baker : The GP's role?

CHAIR: The GP's role in the provision of palliative care. You don't recall?

Dr Baker : We did not make a specific recommendation around that.

CHAIR: Maybe I have jumped ahead. My thing has got confused, sorry. Hold that thought! In terms of going back to the issues around GPs—and I do want to talk about that, so I beg your pardon—and in terms of case management, many people have made the point that there needs to be case management. Would you say the same for somebody who has been living with a disability, that there is still as you move into it the need for palliative care, so that there would be a role given the need for case management?

Dr Baker : Case management is appropriate where the person's needs are complex and there are a number of parties that need to work together well. So in many cases that would be appropriate, I think, when a person reached the end stage of their life. The example we gave in our submission in relation to the NPY Women's Council and the way in which they managed to pull together a lot of relevant parties, some of which may not have been otherwise thought of, was, I think, a good indication of how a case management approach is quite important.

CHAIR: Sorry, my mind was conflicting because I was getting the two submissions mixed up. I apologise for that. It's when you read too many! I tend to remember what people have said but not necessarily who said it. I then got this confused. I want to go back to that point you made in a minute. In terms then of case management specifically for somebody with a disability who hopefully has been receiving support services—and who, as we move into the brave new world, will be receiving even better support services—would it be better therefore, if you do have this process of somebody who has been managing their own self-directed care and they have moved into needing palliative support, to have somebody who has been helping to provide that care as case manager to then do the palliative case management? Otherwise, do you think you would be better off moving to somebody who has special expertise in palliative care? Does that question make sense?

Dr Baker : Yes. I think it depends what weight you give to different expertise and to the relationship. I think in many cases if a person at that stage of life looks to someone whom they know and trust—if their affairs need managing—I would not think that person would need to have the expertise in palliative care but that they should have enough expertise to know where to go to get it. That is why we think some training for disability workers is important, not to become palliative care specialists but to know enough about the palliative care system to know where to go and whom to talk to.

CHAIR: People who have been living with a disability are more likely to have been accessing care services than perhaps other members of our community, and it seems to me it may be a disruption if you then move into a different sort of case management situation.

Dr Baker : I think that is right.

CHAIR: I want to go back to your example of the NPY Women's Council. We have talked a lot through the day about women, and we have been talking about Aborigines and Torres Strait Islanders around that example and end-stage kidney disease and the issues around returning to country, but there are many people that actually do not want to leave country in the first place. So it still requires case management, but in one way it is probably even more complicated because they are not coming out of community for their care in the first place, other than sometimes coming out and going straight back in again.

Dr Baker : Yes.

CHAIR: Have you had experience in dealing with those situations? If you have, what would you recommend that we should be looking at? What are the key things that you think we should be recommending?

Ms Angley : I think that is largely out of our expertise at present. We have providers who support people living in very remote areas, and providing them with good disability support is difficult. That is where our members' expertise primarily lies, rather than in the health aspects of providing good health care out in those communities.

CHAIR: Okay. It is an area that we will be chasing, and we have been today.

Senator MOORE: To counterbalance that, though, it is the personal relationships in a regional centre that have been built up over a long period of time. I am thinking of some regional centres I know in Queensland. If you have found someone who is providing a service and who has already built up the trust and the knowledge then when you probably need them most, at the end, there is an argument about whether is the right time to change. I am not arguing either way, but we have to think about that in an area of knowing in some regional centres and not having much—

Ms Angley : To clarify, I was not necessarily talking about changing providers.

Senator MOORE: It is providing services.

Ms Angley : It is around getting the right services in. I think our members have difficulty supporting people in very remote areas for disability support and providing end-of-life health care in those remote communities.

Senator MOORE: It would need more resources.

Ms Angley : It would be very difficult.

Senator MOORE: The concept of a case manager is real, though.

Ms Angley : Yes.

Senator MOORE: If you have a case manager through the disability network who knows the person and their needs—sometimes non-verbal—you cannot lose that.

Ms Angley : I agree.

CHAIR: Just indulge me for one more minute in terms of that specific issue. There are some good examples. I am thinking of Purple House, who I always refer to, and some of the mobile teams that are going around now. Do you have any services that do that? I am not necessarily thinking just of Central Australia; I am thinking of other areas around Australia. Are you aware of any services—or are they members of yours—that provide that sort of service?

Ms Angley : We have members that I am particularly aware of in the remote areas that travel out to communities to provide services and travel back again, so they are not present in those communities all of the time. NPY Women's Council is one of those. They provide disability support in very remote areas by travelling in and out.

CHAIR: From our questions, you can probably see that we have spent a lot of time on advanced care directives. We were talking earlier about more metropolitan-focused services. In terms of regional services, are you aware of whether there is a difference in people making advanced care directives? We have had some evidence that they have been ignored. Have you had experience of that in rural environments? We were talking more generally before, but I am wondering whether there is experience in the more regional and remote areas of (a) people being able to do them and accessing services to make them and (b) their implementation.

Ms Angley : It is not something that has been brought to my attention by any of our members in remote areas, so I think it is outside my expertise.

CHAIR: Thank you very much. If you could send us those two studies, that would be great.