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Residential and community aged care in Australia

CHAIR —I welcome representatives of Alzheimers Australia. Information on parliamentary privilege and the protection of witnesses and evidence has been provided to you. The committee has copies of your submission. I now invite you to make a short opening statement and at the conclusion of your remarks I will invite members of the committee to put questions to you. Who would like to make an opening statement on behalf of the group?

Mr McGrath —Mr Milham.

Mr Milham —Thank you for giving us the opportunity to be at this hearing today. I am speaking on behalf of Alzheimers Australia as a family carer, member of Alzheimers Australia National Consumer Committee, and a former board member of Alzheimers Australia ACT.

The essential point we want to make is this. We do not believe the funding for aged care provides a sustainable basis for delivering quality care, but additional funding is in itself not enough. We do not want a response that bandaids the system financially and ignores the need for reform to deliver better services. The approach to reform proposed by the National Health and Hospitals Reform Commission has many elements that are in our submission to your committee. We support the reform developed by the commission for increasing choice in aged care by relating the planning ratio to people rather than places, thus breaking the link between accommodation and care, and providing choice for consumers for a mix of accommodation and care options; basing the ratio on 85-plus, rather than 70-plus, to better reflect the population group cared for; developing a national aged care program to provide for the more effective integration of aged care services; and, finally, the adoption of consumer directed models of care.

It follows from this that we hope your committee will support the reform directions proposed by the commission, but I would like to stress five points in our submission. Firstly, there is a need to increase funding for community care, particularly at the high care end. There are only 6,000 extended aged care at home packages for those that require high care in the community, including 2,000 for people with dementia. Nor is community care structured to enable a flexible response so that care packages can respond to a range of needs and not just low and high needs.

Secondly, it is not just the level of funding that is critical but the way services are provided if outcomes are to be improved. Carers and people with dementia should, if they wish, have control over their lives through models of consumer directed care that give consumers the power to determine what services they want, when they want them and where they want them on the basis of either cash or an individual budget managed by an approved provider.

Thirdly, there is the importance of respite care. The delivery of respite care is suboptimal because although demand is high the take-up of existing supply is lower. Flexible respite is the key and the concept needs to be broadened beyond a short break to recognise the importance of activities and social engagement for the person with dementia.

Fourthly, if consumers are to be given choice it is important that they are well informed. Aged care assessment teams need to be resourced not only for their gate-keeping role but to ensure they are positioned to assist older people and people with dementia to plan their future care.

Lastly, there is a problem of accessing special dementia care for those with behavioural and psychological symptoms of dementia. We believe that there is a need for about 20,000 such places in Australia and there are probably less than half that number available at the current time.

CHAIR —Thank you for your statement. Senator Humphries.

Senator HUMPHRIES —As to the EACH programs that you spoke about in your presentation, you said there were 6,000 EACH packages available for those who require high care, including 2,000 for people with dementia. What sort of need, do you think, is actually present in the community that we are not reaching with those 2,000 packages at the moment?

Mr Rees —I forget the exact number we put on that. We put forward at the consumer committee 24 places for high care packages, but let me perhaps respond to that in writing for the committee to make sure I get it right. We have been looking at a very substantial increase in community care, and the one line that we have adopted is doubling the existing national expenditure from about $2 billion to $4 billion over four or five years. That is not just because of high packages. It is because we believe that, unless we strengthen the range of community care, consumers simply will not have the choice. You need to remember that at least 60 per cent of people with dementia actually live in the community, and we believe that about 30 per cent of carers access no services at all. That may be by choice, or it may be because the services do not exist.

Senator SIEWERT —Do you mean 30 per cent of the 60 per cent or 30 per cent of the total? You said 30 per cent of the carers do not access any support?

Mr Rees —Thirty-seven per cent of people who are caring for people with dementia do not access services, according to the statistics that we have been working on.

Senator HUMPHRIES —Do you know how they arrived at that figure? Is that based on surveys by organisations and NGOs?

Mr Rees —No. It is based on as yet unpublished work that Access Economics are doing for us, and it will be published at the end of April. That looks at the supply of informal care and formal care and tries to work out the total workforce supply for people with dementia across the whole range of aged care services. I am perfectly happy to provide that analysis to the committee very shortly. That will be before it is published, but I am sure it will be helpful to you.

Senator HUMPHRIES —One of the things that the committee has been hearing from witnesses is that there needs to be a more flexible arrangement for funding of aged care. Firstly, people are saying that there should be funding that follows people rather than being allocated in advance in certain geographical areas. People are also arguing for more capacity for residential aged care bonds, for people to pay higher charges if they want to pay a higher charge and avoid having to pay bonds and things like that. They want more flexibility. Assuming that was the way we generally went and allowed providers much more flexibility about dealing with the variety of circumstances they deal with—and this is more in the context of residential aged care, of course—do you see there being any dangers in that with respect to the provision of specialised services such as those for people with dementia? You may want to take that question on notice, because you might not agree with what the other witnesses have said about this.

Mr Rees —Broadly speaking, in terms of people with dementia we support the range of options approach, as long as there is equity in that. We support it because the physical accommodation and a good environment is very important for people with dementia. In terms of principle, I think we come to terms with user charges in that kind of content. I cannot think of any particular problems off the top of my head, but we will certainly reflect on that and come back to you.

Senator HUMPHRIES —Would you like to add something, Ms McGrath?

Mr McGrath —For people under the age of 65 with the diagnosis of dementia they often still have younger families and the cost implications for them are enormous. To be able to pay a high bond or a higher daily care fee is just totally out of the question. There could be some issues there for younger people.

Senator HUMPHRIES —You would be in a better position to know about this. There was a briefing here probably a year and a half ago from, I think, Alzheimers Australia—I just cannot remember who it was now—talking about some research that was looking very promising to develop strategies to overcome the effects of Alzheimers or reverse the effects of Alzheimers. Are you aware of where that stands at the present time?

Mr Rees —I am not a clinician or a researcher, but when I am asked that question I am always very cautious. While I point out that there are a large number of medications in trial, the fact is that many of those fall by the wayside. My guess is that you are looking at five to 10 years before much of significance emerges. The brain is rather complex. There is going to be no quick fix. We think that any intervention that is going to be successful is going to be much more around delaying the onset of dementia than a cure as such, so there are two lines of research that are important. One is earlier diagnosis so that you can identify people at risk, and the second one is the medications and interventions that actually slow the process down. I come back to saying that there are always optimists in the world of research and you get sensationalised stories, but I think it is still a way off before we get serious medications that modify the disease process.

CHAIR —Senator Siewert.

Senator SIEWERT —I am presuming from your comments that you have problems getting access to EACH packages. Would that be a correct assumption?

Mr Rees —That is correct.

Senator SIEWERT —Is that basically because of the limited nature, in that there is only 6,000, or do you have problems qualifying as well?

Mr Rees —You must keep in mind that the EACH packages are three years old. I think for people with dementia there is a serious problem, because at the moment you can get access to low care and you can get access to high care, but what happens in the middle. Some service providers, as you have probably been told, mix and match the money they have to try to help the transition for people. For people with dementia there are two things that happen. Because there is no graduated process of access to packages you can wait so long for the high care one that you are almost past it before you get there. Secondly, they are rationed on the ground, and again because you wait so long to get access you might get access and then find yourself having to go into residential care, anyway.

The system at the moment is not really designed to give choice in terms of access to packages. The EACH package is being evaluated, but I do not know where that evaluation is at within LAMA who are evaluating the whole of the Dementia Initiative. My guess is that it is going to be fairly positive. As an organisation, we would like to see more dementia EACH packages. How many is difficult. As I said, I will give you the figure that we have been running with. Essentially, why we ask for flexibility and responsiveness in the system is that nobody actually knows what the balance of consumer choice would be between consumer and residential care choices, because it is not there now. We are not in denial about residential care. We are simply saying that more people would substitute community care for residential care if they had the choice for some part of the journey and they would be able to stay perhaps in the community longer rather than avoiding residential care altogether.

Senator SIEWERT —I know you were sitting there when Anglicare were here and they were talking about getting rid of the distinction between low care and high, where basically you would have a graduated approach. If I understand what you are saying correctly, it is that we should be doing a similar sort of thing with community care and residential care?

Mr Rees —Yes.

Senator SIEWERT —So, if the ACAP team assesses you and you do not get into residential care, what you would have is an assessment team for community care as well, that is, instead of getting a separate assessment for your community care packages?

Mr Rees —That is exactly right. We are not technicians in terms of designing assessments or financial systems, but we would like the consumer to sit down with the ACAP and the ACAP to say, ‘We judge you to be level four. This is the amount of money that is in your budget. Now, the option for you is to spend that money in the community or spend it in residential care.’ At that point the consumer has a choice. If you think 10 or 20 years down the track, they may say, ‘I’d like the person being cared for to be in residential care for four weeks at a time, come home and then go back again.’ You would have models that would mix and match from a consumer point of view that simply are not there at the moment.

Senator SIEWERT —Presumably, also, when people then come out of, say, acute care you could then go into some sort of residential care and then you can go back into the community or back home. Is that the sort of thing that you could also include in that flexible approach?

Mr Rees —We find the transition care program quite exciting. We think that it could be more relevant to people with dementia than it is at the moment. We thought that the evaluation that the minister published was a very constructive evaluation that pointed out the positives of the scheme and how it could be strengthened.

From the point of view of people with dementia, it is quite clear that in some states the transition care programs are hardly used, and in other states that have better resources in the subacute care sector it is better used. We think the transition care program concepts of rehabilitation should be developed for people with dementia as well. There may be no cure, but you can still help people get to their own goal, whether that is residential care or whether it is in the community.

Senator SIEWERT —Have you made representation to government about this? I am presuming that you have so that is a silly question. What has been the government’s response?

Mr Rees —A lot of the government response is waiting on COAG. Many of the things that we are talking to you about in our submission have been in our minds for two or three years. That is not to devalue the ideas. We actually think they are the future. But until government has a clear idea of who is going to be doing what to whom, it is very hard to get a focus.

Minister Santoro, for example, had a review of Commonwealth subsidies, Commonwealth aged care packages and so on, in which the remarkable thing was the consistency of response from both consumer and service provider organisations. My impression, in being part of the National Aged Care Alliance and a lot of other organisations, is that there is a very broad consensus now that the architecture of aged care has to be changed. People are going to argue about a lot of the detail, but there is now a lot of positive feeling about change.

Senator SIEWERT —I must say there is a very consistent theme running through all of the submissions. Thank you.

CHAIR —I would like to ask one or both of the carers to put on the record the key areas of care required for older people with Alzheimers and dementia.

Mr Milham —My wife is in residential care and has been for some time. She is certainly high care. I can backtrack a bit to when she had community care. The issues for us because of her particular condition were partly personal care and partly social care in the sense of giving her an opportunity to socialise with other people and get out into the community and do the things she was used to doing, such as shopping and so on, even though she herself would have had difficulty in choosing what she was going to buy. Flexibility in that was very important. I was fortunate enough to have a case manager who could accept that I understood what was happening and I knew what was really needed, as distinct from what the individual packages were perhaps going to provide. While I funded some aspects of additional care myself, the case manager managed within the package to give her some things we needed in the way of personal care and other things like that.

Since she went into residential care she has not really been able to participate in things because of the state of her health. From what I have observed from other residents, there is certainly a need for more support of the program within residential care, as well as the aspects of support for finance.

Mrs Pritchard —I would like to tell you about the situation that I found myself in. My husband is only now 65. He was diagnosed in 1998. There are different issues for a younger person than for an older person. The problem that I had was accessing a package of any kind to get some care for him so that I could continue in the workforce. That was very difficult. When a package was allocated actually putting it into practice was another thing. There is the flexibility of finding the appropriate things that suited him, as Mr Milham said, and what is suitable for that person. Socialising is a huge issue, whether younger or older, and that was one of the real concerns.

If I had been able to access a package properly I would have kept him at home longer. As it was, I needed to support the family. We still had younger children, so I needed to go out to work, but it was very difficult. In the end I was very lucky and was offered a place in low care residential for him. While it is not ideal, it suits him very well and it suits me very well. The thing that I look at is the quality of the care that he is getting. If I had been able to access that in the community I would have kept him at home longer, and I think that is the same for many of us, whether it is younger or older. The best care that you can get for your person is the most appropriate.

For someone with behavioural problems it is very difficult no matter where you are and I think that is a huge issue. I think the working carer is another problem. How do we access appropriate flexibility with respite, whether it is day respite or weeks at a time? It may not be suitable. If there is a lot more flexibility in the whole range of things it would make it much easier for a lot more people.

Mr Milham —I would like to make one more comment about the respite in relation to my wife. Most of the respite that was available was a minimum of two weeks and when you first want to put the person that you are caring for into respite that seems an awfully long time. I was fortunate in that the facility that I had been talking to had a cancellation of a three-week period and someone was willing to take two, so I got one week. It is about flexibility in the respite and not just in the residential care. Respite is a lot more than that. Respite goes to community respite and everything else in the sense of meeting the person’s needs for both the carer to get some period where they can recharge and for the person being cared for to have some other form of diversion that satisfies their needs at the time. That can be anything from a few hours a week to a week or more in respite.

Mrs Pritchard —I will just add that that changes. It does not stay the same. With someone with dementia you might just think, ‘I’ve got it all organised’, and then suddenly the whole ballpark changes and there is a movement in their condition so you have to start from scratch again. It needs to be an ongoing process.

Senator SIEWERT —When did you manage to get low care? We have heard that it is increasingly difficult to get low care now.

Mrs Pritchard —It is very difficult and I consider myself very lucky. I managed to get a low care place only because I became ill trying to look after him. I had to leave the work force and I could no longer care for him. I then got a place for him in May 2006.

Senator SIEWERT —People are saying that because of the way that ACFI is now being implemented it is really hard to get a place.

Mrs Pritchard —It is much harder. The situation with David is that he can still do lots of things for himself, but he has to be supervised at all times and pointed in the right direction. He does not make the right decisions for himself and it is ongoing. He falls through the cracks of whatever assessments so that the facility cannot claim lots of benefits for him, even though either they or I still have to do those things.

That is another thing that I would like to briefly mention. There is the issue that a carer does not stop caring just because their person has gone into full-time care. David is on a pension. There is no way that he could live in the facility to the standards that are minimal just on his pension. I need to subsidise with other things. Therefore, that reflects on my ability to plan for my future, my children’s future and other things.

Senator SIEWERT —You are right; it is a very important point and it has come up in another context in terms of when people get pension support and things like that. They do not stop caring just because they have gone into residential care or hospital. There have been some issues around losing payments when the person they care for goes into hospital. The point is that you are still caring for that person when they are in hospital.

Mrs Pritchard —Yes. The other thing is that when they need to go to hospital they might be taken by ambulance, but if they need to go to an appointment or something else you still have to organise that yourself. It is time, money and planning to get it all done. Sometimes the carer is not right here on the spot. It may be a remote carer. Ms McGrath could probably tell you a few things about care for someone that is in another state and the difficulties with that.

CHAIR —I am afraid we are going to have to finish. As with all the evidence that has come before us—it happens in every inquiry—this is such a wide-scoping inquiry that we always run out of time. I thank you all for attending, for the evidence that you gave us today and for the submission. We wish you all well.

Mr Rees —I would like to say that I hope your report has the same impact as the Macleay report.

CHAIR —We certainly hope our report has an impact as well.

[2.29 pm]