LYNGCOLN, Mr Neville, Carer, representing Alzheimer's Australia

REES, Mr Glenn, Chief Executive Officer, Alzheimer's Australia

STRUK, Mr Boris, Executive Director, Muscular Dystrophy Australia

STOKES, Ms Kaele, Strategic Projects Manager, Alzheimer's Australia

CHAIR: I welcome witnesses from Muscular Dystrophy Australia and Alzheimer's Australia. I know you are experienced witnesses, so you understand parliamentary privilege and the protection of witnesses. Thank you for your submissions. Do any of you have anything you would like to add about the capacity in which you appear?

Mr Lyngcoln : I am the primary carer of a person with younger-onset Alzheimer's.

CHAIR: We will start with both of the opening statements and then go to questions—and make it as much of a discussion as we possibly can.

Mr Struk : Firstly, thank you for the opportunity to state our view on such an important, potentially significant societal improvement.

I wear three hats. I wear the hat of the executive director of the organisation, but the other hats I wear are those of a parent of a young lad who has muscular dystrophy and a carer—as is my wife, who actually deserves a medal. Collectively I am hoping that NDIS will address a lot of the issues whereby, in my 25-odd years running Muscular Dystrophy, I found out we are not unique. Our life story is mirrored by almost every other family. We have found, when talking to other parents, that the difficulties we have had—lo and behold—the same difficulties. So there is a common thread.

The thing that I think underpins what we do is the sheer exhaustion of looking after an individual who has profoundly physically deteriorated to the point of virtually zero movement. He has a little bit of movement of his right hand—enough to manipulate a joystick—and the other members of the MD community see this at various ages; they can see where their journey in life is taking them. I have also found that the care factor that we have to provide is almost unfathomable for somebody else—that we would be out of bed, on average, about every 45 minutes every night, moving a hand, shifting a pillow, adjusting the night mask, because he is on full-time ventilation. These are very simple interventions that, if you had the physical capability, you would be able to manipulate yourself. This goes right across all boundaries, all neuromuscular disorders and our community as such. They are hanging by a thread day to day, and there is a high expectation that NDIS will be a panacea for all their ills. I have already told them it will not be; I said it will be quite some time before there is even a level playing field.

But that is my personal story. What we do organisationally is try to support families, gain feedback and meet the gaps that exist within the services to provide respite to families and so on. It is a big task. Given the resources, when, on a daily basis, I field a phone call from Queensland or from the ACT, why can't we get this level of support? Why can't we get a wheelchair here? What is the difference between state and federal responsibilities and jurisdictions?

So, there are issues that need to be addressed. This snapshot is just to give you an idea that I am talking with, quite frankly, my heart on my sleeve, because I know firsthand what it is like. I know what it does to our family. My wife, as I said, deserves a medal. The care hours that she provides, and the external support we get—there is no comparison between the two.

CHAIR: Just for the record, is Muscular Dystrophy a service provider?

Mr Struk : Yes. We are a service provider. We fund medical, clinical, scientific and societal research as well.

CHAIR: Thank you. I just wanted to get that on the record.

Mr Rees : Thank you to the committee for having us today. These are complex issues, and we can only reduce them to a level of simplicity by thinking about funding on one hand and service provision on the other. So I will say a little bit about funding, and my carer colleague will talk about the service delivery bit briefly.

In terms of funding, the COAG decision a few years ago in relation to age of 65 was a huge shock to us. In our pragmatic way, we had assumed that dementia was the responsibility of the national government and the aged care program and that our only battle was to get age-appropriate services into the aged care system. We now have, I think, a much more complex system to address in that we now have to be experts not just on the aged care system but on NDIS. For us as an NGO, that is considerable complexity.

There are two issues that really concern us. One is that, in terms of the 24,000 people with younger-onset dementia who are under 65, a large number are in residential aged care. We think about two-thirds of all the younger people in residential care are people with dementia. So that would represent 4,000 or 5,000 people, possibly. So our first concern is whether, if people with younger onset dementia are eligible within NDIS—and that is still a considerable concern to us; we think we are, but we do not know—will it be a pyrrhic victory? And will disabilities pick up the dollars that currently go to the younger-onset group from the aged care program? So that is our first problem.

Our second problem in terms of funding is transition. That is, why would a person at 63 be different from a person at 66? You will be very familiar with that from many, many other groups. For us it is complicated by the fact that dementia does develop over many years, as do other neurological conditions.

And when you intervene is a matter of luck or a matter of accident, depending on the assessment process that you get caught up in.

So, we are very concerned about transition. We know that of the 24,000 people under 65 a very large number are 55 to 65, so they are going to be caught up in transition. We are hugely positive about the principles in the NDIS and aged care in terms of consumer directed care. We do think the NDIS is probably more advanced, so we would actually like to see the culture of NDIS infect the aged care system in terms of those transition processes. But those are the two main funding issues for us: whether it is a pyrrhic victory if people with younger onset dementia do get eligibility and, secondly, the transition issues.

Mr Lyngcoln : I am the primary carer of a person formally diagnosed in 2007, at age 58, with younger-onset Alzheimer's disease. I am pleased to have the opportunity both to make some comments on the Alzheimer's Australia response and to take any questions this committee may have. Glenn mentioned assessment, and I want to make a brief comment about that, which I think is relevant to this. Perhaps because my wife was younger the pathway to a formal assessment was long and tedious. I suspected my wife was severely affected from age 54 or 55, but she did not really get a formal assessment for 2½ years. That is not to say that the efforts of people were not laudable. However, I think with younger onset there are some issues around that diagnosis. If that diagnosis were to take place across an age boundary, that might represent a challenge for the bill and also for those who are implementing aspects of the bill. It is quite conceivable that a diagnosis or a condition might become obvious at age 64 but not be diagnosed at 66 or 67.

I also want to say something about the general principles. Certainly the report goes to support for independence and social and economic participation, choice and control, and high-quality innovative supports. As a carer with practical experience over four or five years now, my thoughts resonate with those. The report makes reference to supporting people with younger-onset dementia whose needs may differ, and I want to talk for a moment about needs differing and about service provision, which has been alluded to.

By way of context, the diagnosis of younger-onset Alzheimer's disease comes at a time in a person's life that is much earlier than they might have expected such news—if they had even expected such news at all. This clearly has a significant impact upon the person receiving the diagnosis, and that is referenced in the Alzheimer's report. The person who has to make plans for the present and the future—the carer—is also significantly impacted. Often the carer needs to prematurely relinquish full-time work, with a consequential loss of income, much earlier than that person may have been expecting to do so. Long-term planning goes out the window. This has a negative impact on the financial status of the carer and the person for whom they are caring. For more than one reason, the present and future financial status are negatively impacted. At the same time, the carer has to develop and deal with the concept of themselves as pretty much a full-time carer. In my view, many are ill equipped to do that. The carer's social network may often be significantly reduced, and so we see reference points for the carer lessened in quality and quantity. And the carer's own mental health may require significant attention, with all the considerations that follow from that. For financial and other reasons, at the same time, the carer may have to put her or his mind to entirely redeveloping a working or professional life within a new construct—limited hours, limited availability, limited possibilities. Whilst that is happening, the carer has to try to negotiate the healthcare system. As a person who is not entirely uneducated, the healthcare system from where I sit is complex. It may not be complex to those who are inside it and understand how the parts fit together, but my experience is that it is very complex for those looking into it for the first time.

CHAIR: I think it is the same on both sides.

Mr Lyngcoln : I am reassured. The issue becomes that, at the same time as these other considerations are impacting, carers have to try to make sense of the system. I think that if I was looking for something out of a rearrangement, it would be to provide support for carers to do that. They need a guide. They really need a support. From my experience after two years, after picking up a guide or supporter it became much more logical and a huge weight was lifted. My experience is that in large part the current range of activities available in the area of dementia, for example, overlay people of more senior years. People with a younger onset diagnosis are often very much aware of what is going on around them and they decide that it is not where they want to be—and Glenn made reference to that. As a result, for laudable reasons, agencies providing such activities may attempt to retrofit their offerings to accommodate a very small number of younger onset people who are with them. The effectiveness of that, in my view, varies and I think is debatable. Consistent with what I believe this bill seeks to achieve, the carer wants to be proactive. Most often, her or his goal, similar to that in the proposed legislation, is to maintain their loved one—the person for whom they are caring—in the family home for as long as they possibly can. It appears to me to that, taking into account appropriate opportunities for respite, that is to everyone's advantage.

On another theme, if we believe, for example, that by appropriate legislation government should only do for people what they cannot reasonably do for themselves, then it might be reasonable to focus on the carer who is trying to plan and develop a life for their loved one with younger onset dementia. At the moment, what can they not do for themselves? They cannot assure the person for whom they are caring of certainty in the longer term. The carer cannot make the system any less complex. So I guess from where I am sitting I am saying to you that the plea would be to keep it as simple as possible, especially across the age transitions. I think that, to a certain extent, in the system that exists at the moment, a person with dementia is meant to fit the system. The system is not designed to fit the person, and that is a significant issue.

I guess in conclusion—I will not go on too much further—I support the view that people with the diagnosis of younger onset Alzheimer's are falling through the cracks already. I think they are disadvantaged. I think their carers are disadvantaged for the reasons I alluded to earlier. I think what we are looking for here is a system of support that is easily understood, especially across any transitions.

CHAIR: Thank you, Mr Lyngcoln. Ms Stokes, do you have anything at this stage?

Ms Stokes : No.

Senator SIEWERT: I want to follow up on your evidence and, in particular, how you think the bill should be amended or improved to take on board the issues you have just raised. For example, we have had representation to the committee that carers and families should be more clearly written into the bill. I am wondering if you think that would help or is important and whether reference to the Carers Recognition Bill, for example, should be included in the bill.

Mr Lyngcoln : If I go to the general question—and I think Glenn touched on it earlier—I think carers would be concerned about the benefits that they currently enjoy with the younger onset person and how they will be carried over in any change or transition. I think that is creating uncertainty. In terms of security, in a lot of cases where we are talking about younger onset there has been a significant financial penalty, due to giving away work, or whatever. I think any consideration that would be given to support of carers financially, especially in the early days, to negotiate any new system would be of benefit.

They are general comments not precise comments about elements of this.

Mr Rees : I think there are two strategies that are really critical. The first is the one that the government has already implemented which is to have a system of younger onset dementia key workers across Australia who actually have three functions: (1) spot gaps in services—that is not difficult; (2) help service providers develop services; and (3) steer people who have dementia and their carers through the care system. That notion of key workers is complex. I have made it sound simple but it is complex. We now have $16 million over four years to implement that process as part of Living Longer Living Better. It is a miracle that we have that money from the Commonwealth given that we now seem to be the responsibility in terms of younger onset dementia in the context of the NDIS, but I am very grateful for the funding because I think it is a key strategy. Something that consumers really want is a friend through the system.

The second strategy is what to do about assessment and the consistency of that across the aged-care and disability system. The first reaction in some states to the COAG decision on the age 65 split was to say that the assessment teams for aged care would no longer look at younger people. So we had younger people bounced out of aged care back into disability and they said: 'We don't know anything. You'd better go back again.' We sorted that out eventually, but it is perhaps illustrative of what could happen with the NDIS in terms of assessment, unless that issue of unified assessment—and not so much the clinical aspects but the actual functional disability—is properly considered. I do not know what that will mean because we have struggled in aged care for 25 years to get unified assessment across Australia. I think, in some ways, the legislation has to highlight the assessment issue along with the information issue if this system is going to work. Where will you go for that unity of view about a person's needs if you do not have the two systems talking to each other at the assessment level?

Senator SIEWERT: So the legislation should specifically refer somehow to assessment; take some of what is currently proposed for the rules and put it into the legislation—is that what you are saying?

Mr Rees : That may give it a higher profile. We are working through the rules document at the moment. But you asked what matters to us. I think what matters to us is be very clear about where the responsibility lies for assessment and being very clear about that in terms of governmental responsibilities.

Senator SIEWERT: While we have that 65 line, the concern is that you are not going to get that unity of assessment; it is not going to be as easy to get that unity of assessment.

Mr Rees : That is right. It has never been easy. Back in 1985 when I was involved in the reform of aged care, we looked at whether we could get disabilities into aged-care assessment teams so that we could have a unity of assessment in some way and it proved to be too hard. I think it still is very hard. The principles have to acknowledge in the NDIS that we do need a commonality of assessment across the two systems in terms of functional disabilities.

Senator SIEWERT: Have you raised this with government?

Mr Rees : No, we have not. We have come on the scene very late and we are very grateful for the opportunity to put a submission in to you because it forced us to actually start thinking more actively.

Senator SIEWERT: Can you give me an example of what you think will be the practical outcomes if the 65 cut-off is maintained for those who have early onset dementia? I suppose I am asking about that transition process. What will the practical outcomes be if it is maintained as you see it both for the person and for the carer, particularly for the person, if they are in the system and they are 65? What will the difference be?

Just to highlight it, yesterday in Geelong we had a practical example. It happened to be somebody suffering from the impact of a stroke. What are the different sorts of support somebody would get if they were under NDIS—if they were in the aged care system rather than under the NDIS?

Mr Rees : Without being too simplistic, that is why I think it is critical to distinguish between funding and service. In one sense it does not matter to a consumer where the funding comes from, as long as it comes. If a person who is 63 can be assured in some way that the supports they get post-65 are going to be the same in terms of the financial envelope, they are going to be much less worried. There is the complication that the aged care user charging system is going to be quite different under Living Longer Living Better to NDIS. So the individual is probably going to be worse off post-65 because there are more years of charging in the aged care system. That is the first issue.

The second issue for me is cultural. As I see the NDIS and the disability sector, for 30 years it has had an interest in rights and participation in society of a kind that the aged care sector has never had. The aged care sector has been much more pragmatic and more successful in getting funding, which is ironic.

The other thing for the consumer is coping with the changing culture as you cross 65, and not simply the funding issues. What concerns me as somebody who is a bit evangelical about the consumer's right to care is that the aged care system ought to resemble the National Disability Insurance Scheme in terms of philosophy, and I would like to see the post-65 world in aged care more similar to NDIS.

Those would be the three main barriers that I see.

Senator SIEWERT: One of the issues we have not canvassed over the last couple of days is your points from chapter 3 about when a decision is deemed to be made when the CEO does not respond. It seems to me to be quite a bizarre way to say no.

Mr Struk : Absolutely. I think in any normal business practice, whether it is a complaint or a bid for a tender, you are assured of a response whether you are successful or unsuccessful. In this situation if you do not hear anything for a period of time you are unsuccessful. Did it reach the target? Was it received? What is the consideration? Why was it rejected?

Senator BOYCE: How do you appeal it if you do not get something back.

Mr Struk : Exactly. It is quite frankly bizarre and out of normal practice to adopt that. I do not want to be cynical, but that really stood out for us. How can you appeal it and pursue it further?

Senator SIEWERT: Which takes me to the broader issue of the appeals process. Some decisions can be appealed and some cannot. Would it be better to just have one that you could do for all decisions?

Mr Struk : Regardless, there should be feedback on the situation. For us, from a muscular dystrophy point of view, depending on what the grounds for rejection are—

Unidentified speaker: Which you will not know—

Mr Struk : which we will not know under this proposition. But in our situation we have 60 distinct neuromuscular disorders that manifest in the paediatric, teenage, middle aged and elderly. The very issues that Mr Rees is talking about—transitioning from pre-65 to post-65—confront some of our community. So, to know why something has or has not been rejected will be somewhat complicated for us because we are not dealing with a very simple, clinical situation; it varies from individual to individual depending on the type of neuromuscular disorder they have.

Senator FIFIELD: From the point of view of MDA and Alzheimer's Australia have you been contacted by the NDIS launch transition agency or been involved in any preparations for the launch in the Barwon region or elsewhere in Australia.

Mr Rees : The short answer is no. We were invited to the round table yesterday with Jenny Macklin and Mark Butler, to talk about the aged care-NDIS interface, which was a positive thing to do. But we have heard very little, which is why we have taken the opportunity of putting submissions in now. We have found it very difficult to know where younger-onset dementia fits. I think it is clear from what we have said that that is a long-standing problem in terms of funding.

Senator FIFIELD: Was anything learnt from the round table?

Mr Rees : An interesting question was asked at the end of the meeting to the departments, both FaHCSIA and the Department of Health and Ageing. It was: have you learnt something today? And they said 'Yes,' which meant they were then on the spot to define what it was. It was probably mainly around some of the more detailed things that some of us said about the transition issues. In the case of dementia you have this long trajectory. As Neville said, you might be suspicious that your partner or friend has dementia four or five years before it happens. So when does the legal process start in terms of that recognition? Does the clock count backwards or not. I think some of those issues came through to the departments more clearly yesterday. But they are going to define the themes that came out yesterday, which would be helpful.

CHAIR: We are looking forward to it.

Mr Rees : For those of us who were new to the debate it was a helpful occasion.

Senator FIFIELD: Mr Struk, have you had any interaction with MDA's transition launch agency over the launch sites?

Mr Struk : Not significantly. We are a small by dynamic organisation. We are resource poor so we have to try to get the biggest bang for buck out of who we have in our team and what we try to achieve. At times we have to make a decision about what and where we attend. Even on the state level, whilst a different scenario, with the health regions in Victoria I have to make a decision whether we go to every forum in all the regions. Once upon a time it was all out of head office and it was easy because you were dealing state-wide. Now you are dealing on a region by region basis—

CHAIR: That is happening all across the country.

Mr Struk : Absolutely. For an agency that provides right across the board we cannot be close, we cannot sell our story and we cannot identify all of the needs on a one-by-one basis. Then there is an inequity in response.

One thing I would like to touch on concerns something I said in the opening statement. There is a very high expectation but even now there is an absolutely huge unmet need. Because of the absolutely advanced stage of MD with Ryan, my son, he was prescribed a wheelchair that cost about $28,000. The aids and equipment program, or SWEP, provided $8,500. It is a progressively deteriorating condition. It took us another 18 months to source the funds from everywhere and anywhere we could to provide the funds to give him his quality of life. For that 18 month period of time he was assessed: 'Here is your need today and this is where you will be.' But it took 18 months before he was able to have an improvement in his quality of life, hence our family was disadvantaged, as well.

A parent in Canberra got in touch with me recently about his son, who had attended our respite camp. He cannot get a wheelchair. They have to privately fund it and knock on doors—he has met with the ACT government. As an Australian I am devastated by the fact that we can deliver a degree of service uniformly around the country and we treat every person affected by muscular dystrophy with compassion, care and love and all of those positive things you can, but then to turn around and say to somebody in Queensland or the ACT or some other state, 'Sorry, you can get this in Victoria or South Australia but you cannot get it in your back yard.' They are members of our community. One in 1,000 people are affected by progressive neuromuscular disorder, one of the muscular dystrophies. The Access Economics report we commissioned stated that the economic impact of the muscular dystrophies on Australian society exceeds $6 billion per annum. Whilst the public and community recognition of the disorder is low, the economic impact is very significant. The graph in the first four or five pages is a tell-all. I do tell our community that this is not going to be TAC. Why couldn't my son have been injured in a motor vehicle accident. That is the sad reality when you have a genetic disorder—the referencing and wishing for a motor vehicle accident instead. It shows the inequity of the support that we as a society are providing for our community.

Senator BOYCE: Am I right in also assuming that, like motor neurone disease, often by the time you have the wheelchair you will have deteriorated further and will therefore need a wheelchair with other features?

Mr Struk : With Duchenne muscular dystrophy from about 10 to about 18 a child can go through potentially three wheelchairs. There is physical growth and deterioration. The standard joystick is no longer suitable. The joystick Ryan uses is about $3,000. It is the size that I am indicating. It is the softest—it is like a fly landing on it. In that 18 month period there were things he could not do because he did not have the physical infrastructure around him to enable him to do that. That is echoed across really the one in 1,000 people affected by the disorder.

Senator BOYCE: Mr Struk, you have suggested that the NDIS should be a legislated percentage of the GDP—

Mr Struk : Absolutely—

Senator BOYCE: and I think there have been other suggestions about levies. Could you talk through your concerns about the money coming being budgeted for?

Mr Struk : It is very easy. A Medicare levy, and that is it. That is the pot of money that is available.

Senator BOYCE: But the Medicare levy does not cover the cost of Medicare.

Mr Struk : The process though, or the pool of money, is in that concept. Whether it is a percentage of GDP or a levy of some sort, regardless of the will of the government of the day, we know what the GDP is and we know what percentage will be available for NDIS. Or, as a levy, you know what is coming in regardless of which government is there, and their will, or the changes that come—decrease something this year or increase it. Having it pegged to something measurable and tangible enshrines it in perpetuity—or as much as you can politically.

Mr Rees : I would agree with that. One of the interesting discussions at the round table was pragmatism versus trying to achieve the vision, if you like. I must admit that I am a bit of a pragmatist. The aged care sector has this allocation of funds for community care packages and residential care. We all know that results in rationing, but at least you know what the envelope is, and within that you can try to maximise the efficiency and use of resources.

I think there has to be some honesty in the NDIS at some stage over a longer period so that consumers can understand the priorities being set and whether those who are getting assistance now have been grandfathered and will go on getting those funds, or whatever.

Rather than looking at percentages of GDP or maybe other things, I think from a consumer point of view all I would say is that we need certainty about what the envelope looks like over the next few years so that we can be realistic in our arguments.

Senator CAROL BROWN: I just wanted to touch on the plans. In your submission you talk about the formulation of plans but also particularly what the process is for creating new plans and making changes to plans. Do you see what is in the bill as adequate or would you suggest changes?

Mr Rees : Conceptually we like plans. We like the notion of focusing on the individual. We have the same issues that Mr Struk has referred to in terms of there being over 100 causes of dementia. Every individual is different and their personal circumstances are different. Their causes may have linkages to neurological diseases, heart disease, diabetes, alcoholism, smoking—you name it. Dementia can result from any one of myriad circumstances. So really you have to start with the functional capacity of the individual, both physical and cognitive, and plan a response to that. I do not know whether that is answering your question.

Senator CAROL BROWN: As their needs change, I am really interested—because we have had a lot of discussion around plans and we had some discussion this morning around red tape and plans—in the triggers that are there in the legislation about amending plans and creating new plans. Are you happy with what is in the bill?

Ms Stokes : What is in the bill is quite general at the moment. I think creating so much detail to go into the bill that it ends up prescribing every single scenario that you could possibly think of just is not practical.

Senator CAROL BROWN: Are you happy with the triggers that are in the bill in terms of amendments to plans?

Ms Stokes : I think so.

Mr Rees : Maybe we should look at that and, if we have a concern, come back to you. The one thing I would say is that the progression of dementia in younger people can be much faster and unpredictable. So we would be looking for flexibility in review processes and for that to be quite clear somewhere or other. Maybe we could just drop you a line on that.

Senator BOYCE: Some submitters have suggested that they feel capacity is being seen as a static thing within the legislation.

Senator SMITH: I have just one question, Mr Rees. I just want to be clear whether you have or have not yet received clarification as to whether or not people with early onset dementia will be part of the NDIS.

Mr Rees : We have had no letter which says we are in or out. We have been invited to discussions, which suggests we are in. But, as I said in my introduction, that kind of begs the question of how the transition works because we could be in and it could be an entirely pyrrhic victory. We are still uncertain. When we wrote our submission to you it was quite deliberately to say that we assume we are in, but we are really still pretty uncertain.

CHAIR: Thank you so much. Mr Rees, I think one of the reasons that you are engaged in the process is that your organisation is always engaged in getting your issues on the board, as with Mr Struk, considering the very small amount of resources that your organisations have. Thank you for your submissions and your engagement. If you have anything you want to add later, please just be in contact with the secretariat.