FARRELL, Mrs Deborah, Acting Regional Manager (Victoria), MS Australia on behalf of Neurological Alliance Australia

SMEATON, Mr Daryl, Chief Executive Officer, Parkinson's Australia on behalf of Neurological Alliance Australia

[10:46]

CHAIR: I know that you are experienced witnesses, so you understand how the process works. I know you will have opening statements, so have you decided who will go first?

Mrs Farrell : Yes. Mr Smeaton.

CHAIR: If you would like to do those, and then, as you well know, we will go to questions from the senators. We have had evidence in a number of our regional hearings from members of your organisation and they have always identified their link with the alliance and spoken about how they have worked together on the submissions.

Mr Smeaton : The alliance is an alliance of national not-for-profit peak organisations representing adults and children living with progressive neurological or neuromuscular diseases in Australia. The purpose of the alliance is to promote improved quality of life for people living with these conditions and the usual funding to support research.

The introduction of the NDIS has the potential to transform the lives of people living with progressive neuromuscular and neurodegenerative diseases by offering more responsive funding that enables access to services and allows for incremental support as a person's circumstances change. The Neurological Alliance Australia represents a significant proportion of people who will access the NDIS and, therefore, it strongly supports the introduction of the scheme. It is imperative that the legislation and regulations deliver systemic reform and create an agency that not only functions within the disability sector but also functions across the health, ageing and community sectors. A collaborative interface and the ability for all sectors to work together is critical and non-negotiable if we are to meet individual needs and improve outcomes.

In addition, we believe that continuation of independent, condition-specific, not-for-profit disability support organisations is essential to personal service and systemic policy and sector advice. There are examples of cross-sector collaboration and coordination, but generally the experience of our clients, staff and other stakeholders is delay and frustration, which all too often increases the burden of their disease or disability. Improved coordination will mean the individual is considered as a whole person and not as a diagnosis or collection of symptoms. People must be able to move seamlessly across service sectors as their needs change, there must be integration of their social context and health care needs, duplication, fragmentation and confusion must be minimised and age must not be a barrier to accessing support to meet assessed need.

Our concerns are about ensuring the varied and complex needs of the individuals and families affected by the conditions we represent are reflected in the legislation.

I have provided a copy of this statement to the secretariat, so I will go over a couple of points rather than go through the whole lot. Our first point in relation to the bill relates to clauses 13 and 14 around the provision of coordination, strategic and referral services by the agency and the fact that the agency may provide funding to persons or entities. The effective design and delivery of these functions relies on the agency having comprehensive and expert information and knowledge of each person's individual life journey. The NDIA should draw on the expertise and commitment of organisations involved with Neurological Alliance Australia with respect to specialist information and education as well as expert, individualised and personalised support and services.

Clause 22 talks about age, and this is an issue very clearly at the heart of people with neurological conditions.

CHAIR: We would be very disappointed if you did not mention it.

Mr Smeaton : This clause is an example of the need to accommodate disease-specific differences. The age, onset and time frame of progression, for example, of Parkinson's disease can vary by 50 years. For many people, their symptoms progress for 10, 15 or, often in young onset cases, 20 years either post diagnosis or from first onset symptoms. On the other hand, people with MND suffer rapid progression between three to five years from diagnosis to death.

People who acquire a rapidly progressive disability, creating changing and escalating needs, when over the pension age must have equal access to care and support to address needs related to their disability as well as to their age. We are encouraged by the clause around early intervention requirements, but it is absolutely important in that area that we expect that people diagnosed with a progressive neurological disease will be included in the scheme from diagnosis, irrespective of whether they have a reasonable and necessary support at that time. Our rationale for that is that it is inevitable that disability will occur at some time in the progress of all of the conditions that the alliance represents. This will ensure that support will be available as soon as a need arises, and will prevent a crisis approach to service delivery. In other words, we do not have to prove the case; we have only to prove the need.

The next clause I will talk to is proposed paragraph 31(k), principles relating to plans, which states that a participant's plans should, so far as is reasonably practicable:

(k) provide the context for the provision of disability services to the participant and, where appropriate, coordinate the delivery of disability services where there is more than one disability service provider.

This is an important principle in the management of progressive neurological diseases because of the changing and degenerative nature of the conditions and the complexity of health and social situations. Clear assessment and referral processes and protocols for the interface between the NDIS service providers and health, including primary health, palliative care and aged care systems, must be developed, supported and implemented to facilitate timely, coordinated inter/multidisciplinary care, and to reduce duplication and crisis management.

Persons under the age of 65 years of age residing in residential aged care is an ongoing concern. The legislation does not adequately address the funding needs of a person with a disability who is under the age of 65 years and residing in residential aged care. We believe the legislation must create and fund a sustainable and accountable role for not-for-profit disability support organisations. Our organisations and others like us provide trusted, local and condition- specific case management and information services. Further, a sector underpinned by expert, not-for-profit DSOs will continue to provide independent advice and anticipatory support of system design policy and service quality. I would now like to ask Mrs Farrell to add to that.

Mrs Farrell : I reiterate a couple of points about coordination. We currently, as organisations, are the facilitator of bringing together and linking the sectors, the jurisdictions. These people are very reliant on needing to pull together a network of support from a variety of areas and therefore being able to move across those jurisdictions seamlessly, without needing to wait at each gate on the waiting list. The effectiveness of coordination means that we can delay the loss of functionality and importantly keep families together, which is a significant impairment on this group of people. The burden of care as a consequence of the hidden symptoms and poor symptom management means that the family is often quite stressed through loss of social role in families and in society and they also lose a lot of economic viability and sustainability.

The organisations that the Neurological Alliance represents have a huge body of knowledge and evidence and already work in a collaborative way. It would be interesting to explore further the disability support organisation role and how that is going to look within the NDIS. We would encourage looking to these sorts of organisations to retain the role.

Concerning eligibility, it is important, I believe, to consider diagnosis and not just functional impairment because, again, of the hidden symptoms within these disease groups. The hidden symptoms often create much functional impairment through depression and fatigue, which prevents people following through and initiating. That is where the coordination also comes into supporting a person to travel or to meet the next adjustment as a consequence of their disease. They are important things to keep in mind.

Senator SIEWERT: Can we go from there in terms of early intervention provisions in the bill. Are there amendments which you think are needed to be made to the bill or are you concerned about the interpretation of the current amendments?

Mrs Farrell : I really am very pleased to see early intervention in there and a link to neurological. I think, though, that there perhaps needs to be some understanding or clarification as to what the bill is actually defining as what would fit into that early intervention phase, because it is not necessarily at an early stage of diagnosis; there is a need for early intervention to occur across the various points of the disease.

Senator SIEWERT: I want to pursue this a little bit, because it says:

… the CEO is satisfied that provision of early intervention supports for the person is likely to reduce the person’s future needs for supports in relation to disability …

Mrs Farrell : Yes.

Senator SIEWERT: With a progressive neurological disease, it would depend on the way you interpret that, I would think. Secondly, it says:

… the CEO is satisfied that provision of early intervention supports for the person is likely to:

(i) mitigate, alleviate or prevent the deterioration of the functional capacity of the person to undertake communication, social interaction, learning, mobility, self-care or self-management—

and the other item is about informal supports for carers. So do you think that your concerns are met by those? Those are the two key provisions there, I would have thought.

Mr Smeaton : I think the short answer is: yes, we are. Discussions in recent times with government and their advisers have encouraged us in terms of the use of, if you like, an early intervention process for people with neurological conditions and the way that the NDIA is planned to work at a regional level. We are satisfied that people diagnosed with a neurological condition, in terms of their eligibility, will become known to the NDIA so that, when actual symptoms of disability occur—and that is an inevitability, of course—those people do not have to go through another process to prove their eligibility and therefore only need to go to the assessment process.

Senator SIEWERT: Hence the definition between diagnosis and functionality—

Mr Smeaton : Yes.

Senator SIEWERT: or functional capacity.

Mrs Farrell : The two need to be looked at together, because we can then look at the anticipatory needs—the prospective needs. Just to add to Mr Smeaton's points, there may be a number of interventions that would fall within the mainstream. So my understanding of how the NDIA—the agency—will work is that there will be decisions or discussions about where these supports can come from, so people will be looking to refer back to mainstream or to other sectors. The concern there is that, if there is not someone actually coordinating and travelling with them to ensure that those supports are actually established and to confirm that they are going to be able to access those, what we will have is people needing greater supports sooner. That is the concern we have about people falling back through the gap.

Senator SIEWERT: Part of this is about early planning rather than early—

Mrs Farrell : Yes—early intervention, I guess. It is great that the NDIS allows us to have that conversation and look at some early planning, as opposed to the current system, and to look at future planning.

Early interventions occur all the way along a person's disease progression. I will give you an example. For one person an early intervention, where they are having some mobility issues perhaps—that might be a good example—might be to address their fatigue; it might be to put in some home help and things like that so that they can manage the normal home duties and/or go to work if they are still working. A person might have a physio assessment and have a range of exercises prescribed, with ongoing review of those, to sustain or strengthen core body strength. Retaining that body strength may delay the need for them to have a walking stick or a walking aid, and so it goes on if you take it down that path.

Senator SIEWERT: We are looking at how you would implement this, but most immediately we are looking at whether the legislation needs amending before we take it through the Senate. From what I can gather, while I totally understand what you said, it is really about how it is going to be interpreted, isn't it?

Mrs Farrell : Yes. We are concerned that the agency will not have the evidence and body of knowledge to be able to identify the early interventions required. That is where we come back to saying, 'We would like that knowledge and evidence to be recognised. We are already in that practice. We would like to be engaged in some of those things.'

Senator SIEWERT: It sounds like you have had those discussions with the department and also now with the transition agency. Is that right?

Mr Smeaton : Not directly, but in our discussions with the government, yes, we have certainly been encouraged by the noises that they are making in terms of the recognition of expertise of disease-specific groups, in terms of advising the agency on how disability in this area progresses, so that they understand that it is not an instantaneous issue. That is the point we are making: it is progressive, it is inevitable and there is no going back, but it does not occur according to a template.

Mrs Farrell : Some organisations have definitely had discussions with the launch sites around this issue.

Senator SIEWERT: The big issue is age. That comes up all the time. Your recommendations relate to having a seamless approach. The concern is that what you get on one side of being 65 is different to being on the other side of 65. That goes to equipment, levels of care, hours of care and support that you can get. That obviously means huge changes to the aged-care system, basically. There are another couple of suggestions that organisations have made. One is that you get rid of the 65-year line. The other is that you have a combination of NDIS and aged-care support to support a person.

Mr Smeaton : Certainly in talking to government about this, we have said that people who acquire a rapidly progressive disability that creates changing and escalating needs—which is what happens with neurological conditions—

Senator SIEWERT: There are other disabilities where you could potentially have the same thing.

Mr Smeaton : When over the pension age, though, we say they must have equal access to care and support to address needs related to their disability as well as their age. People may in fact enter the aged-care system already with an NDIS package. We certainly would not want that package to be smaller, or less, when in aged care.

Senator SIEWERT: My understanding is that, if you already have a package, that will—

Mrs Farrell : There will be continuity, yes. With the people we see often entering aged care—whether it be a facility or aged care within the community—often it is the equipment that people need that is problematic. We are really looking for a bit of a top-up model, I suppose, whereby only those things that aged care traditionally would never fund anyway would be funded by disability. So we are not asking for the NDIS to fund everything and not ensuring that the other sectors are responsible for what they should be responsible for. If you have somebody aged 66 and you can provide a piece of equipment for them that keeps them at home, surely that is a better quality life outcome for them as well as their family, and for community in terms of economics. It is about finding that balance always, isn't it, but a top-up model would enable a better outcome for all concerned, including the aged-care sector.

As it is, people—young people, even, under 65—are entering the aged-care sector and cannot access aids and equipment, and they cannot access additional support for community participation and social participation. It is organisations like us that often are pulled into those nursing homes to try to unpack the behaviours and the frustrations that people experience by not having control of their situation with an aged-care environment. Also, often aged care is unfamiliar with the additional needs of this group of people, or any person with a disability—it is not just people with neurological disorders, as you said. So there are cost savings, and if things were more collaborative and we were working much closer together and sharing in the role of transitioning people wherever they require supports, then we would have less duplication and less fragmentation within the current systems.

Senator BOYCE: I had the opportunity to visit some aged-care facilities in Brisbane last week, and all of them were using organisations such as yours for one patient or two or three patients. What funding, if any, do your organisations get to provide that sort of assistance at the moment?

Mrs Farrell : None.

Mr Smeaton : This is a vexed question About 10 per cent of people with Parkinson's disease are in aged care and people at the end stage of Parkinson's are probably the most difficult people to deal with in aged care.

Senator BOYCE: Why is that?

Mr Smeaton : Because often the disability is such that a person can wake in the morning in a catatonic state, because they are off their medication, for example. And people in aged care—

Senator BOYCE: I am just trying to work out how you 'wake' in a catatonic state—but I know what you mean.

Mr Smeaton : Their eyes are open but they are not responding. Generally people in aged care are not trained to deal with those sorts of situations. We have gone from an aged-care sector that was generally populated by nursing staff, and now they are not. That issue is something that my organisation around the country gets regular requests to provide a training session to a single aged-care facility because they have got a couple of people, or more people. But we have to charge for that, because we get no funding to provide it. But it is something that is absolutely essential for those aged-care facilities to deal with a person with Parkinson's.

It is something we are engaging with government about, but I am not holding my breath. Even under the new aged-care package where we think there should be a provision for that sort of thing, it is going to be difficult to do.

Mrs Farrell : It stems as well from health in terms of inadequate discharge planning and engagement of organisations like ours to actually look at how to support someone back in the community or, if the only option is for them to go into aged care, how to best transition and prepare all concerned in that transition or relocation.

Senator BOYCE: Do you think there are people in care who could be at home if one or other of your organisations had been involved at an earlier time? Following on from your early intervention suggestions—

Mrs Farrell : Yes.

Mr Smeaton : I would probably say no, but I think that is because when people with Parkinson's need aged-care support they are generally in the later stages of the condition and there is only one place for them to be. That raises the very vexed issue, of course, of carers. You get to the stage where the carer, the family support or whatever can no longer deal with the condition that they are facing.

Mrs Farrell : I think that aged care needs to be an option for people with disability but not the default, which it is increasingly becoming because the response time within disability cannot support people to go home.

Senator BOYCE: The response time being the time when you ask for increased assistance or for new equipment.

Mrs Farrell : Or any assistance at all. Many people will enter hospital because of an exacerbation of their symptoms or poor symptom management of any of their diseases. There will be some determination that they actually cannot return home because their level of function has not returned as a consequence of that exacerbation. Therefore, because they cannot go home safely, there will be a decision to place them in rehab for a period of time and then, if we cannot get funding for those people to return home with supports, the default seems—

Senator BOYCE: There is no option.

Mrs Farrell : Yes.

Senator BOYCE: What are going to be the consequences in your view if the government does not accept the fact that 65 should not be a line drawn in the sand?

Mr Smeaton : I am an eternal optimist. Certainly I am encouraged by the discussions that we have had with government around this issue that, while age 65 will mean the responsibility for the provision of the services will fall on the aged-care facility, the funding of that service, if there is a package in place beforehand, should continue. That is the encouragement that we have had. But it will then be something borne by the aged-care facility rather than by the NDIA. The change will be who is running the show once 65 occurs. That is essentially what I understand. I am encouraged by the statements that age 65 will not mean a diminishment of the services being provided; they will just be provided by another source. I hope I am right.

Senator BOYCE: Nevertheless, the bill as it currently stands uses 65. The suggestions you currently have would not change that; they would rely on some other action. Are you quite confident about that other action?

Mr Smeaton : I am encouraged that we are talking about something where there are two things happening at once: the NDIS development and the aged care reform package. I am encouraged by the discussions I have had that there is a sufficient dovetailing of things that might happen, that age 65 will be something that happens but that does not change the services people are getting other than in terms of the source of the funding.

Mrs Farrell : Through continuity of service.

Senator BOYCE: You have already made the point that many of these conditions progress rapidly. What is your understanding of what happens to the person who has gone into the aged care system with a plan, but clearly that plan needs to be assessed? Who does that? Who funds the changed needs?

Mr Smeaton : My understanding is that it will be the aged care system, not the NDIS, if the deterioration occurs once the person is in the aged care system.

Mrs Farrell : Are you talking about someone who is already in aged care?

Senator BOYCE: No; let us say someone goes into aged care with a package and any neurological condition and then at 67, for example, it becomes clear that the package they currently have, which is addressing the specific needs relating to their disability—not ageing—is insufficient. In your understanding, who negotiates and arranges that new plan and who pays for it?

Mrs Farrell : I would have understood that it was the responsibility of the local area coordinator or the agency to check in and review that plan at least once a year.

Senator BOYCE: Under the NDIA?

Mrs Farrell : Yes. And if there are further increases in needs—a change in the piece of equipment, for instance—then it would be the responsibility of the NDIA to cover that cost.

CHAIR: Thank you very much. Thanks also for the work of the general alliance; I think it is a very valuable thing. We will be asking many of those questions of the department this afternoon.

Pr oceedings suspended from 11:23 to 11 : 42