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Community Affairs Legislation Committee
31/01/2013

ADAIR, Ms Michele, Chief Executive Officer, Cystic Fibrosis, New South Wales

DARABI, Mr Daniel, Private capacity

LYDON, Ms Amanda, Community Support Worker/Nurse, Hunter Region, MS Australia

OPIE, Mr Graham, Chief Executive Officer, Motor Neurone Disease Association, New South Wales

TAME, Ms Susan, Manager Community Services, MS Australia

[10:57]

CHAIR: Thank you all for coming to share with us today. We know your organisations have been deeply involved. You have all been involved in hearings before, so you know the process. All of you can make an opening statement focusing in on your own areas and the issues. Then we will go to questions. It is really a discussion so we get as much information shared as we possibly can. I know information on parliamentary privilege and the protection of witnesses has been made available to your organisations. If you have any questions please let us know.

We have submissions from MS Australia. Do we have a written submission from anybody else?

Mr Opie : We did a national submission for the Motor Neurone Disease Association.

CHAIR: That is right. Is there one from Cystic Fibrosis New South Wales?

Ms Adair : We have both a call to action and a shared statement for you, which we thought we would share because there are some common areas. We thought we would allow plenty of time for individual questions.

CHAIR: Is the shared statement on behalf of all three of you?

Ms Adair : Yes. Thank you for the opportunity to help inform the design of the bill. Multiple Sclerosis Australia, Motor Neurone Disease Australia and Cystic Fibrosis Australia strongly support the introduction of the NDIS. It has the potential to remove many of the inequities and inefficiencies of the current system and to substantially improve the quality of life of people living with chronic illness and disability.

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 across health, ageing, the community sector and indeed the social security systems that underpin so much of our social fabric. A collaborative interface and the ability for all sectors to work together is critical and non-negotiable if we are going to be able to meet individual needs and improve outcomes. In addition, we believe that independent condition specific to not-for-profit disability support organisations are essential to local service coordination and the provision of systemic policy advice and quality assurance.

There are already examples of cross-sector collaboration and coordination but generally the experience of our clients' staff and other stakeholders is one of delays and frustration. All too often this increases the burden of disease and disability. Improved coordination will mean that an individual is considered as a whole person with goals, fears, strengths and priorities—they are not a diagnosis and they are not a collection of symptoms. People are able to move seamlessly across the service sectors and to have their needs appropriately accommodated as they change. There will be integration of their social context and their health needs. Duplication, fragmentation and confusion will be minimised and age will not be a barrier to disability or community support. Our shared concerns are ensuring that the varied and complex needs of the individuals and families affected by the diseases that we represent are reflected in the legislation. People that live with chronic illness do not necessarily have disabilities to the casual observer but that does not mean that they are not very real.

We have some specific comments in relation to the draft bill and they are in the documents that we will provide for you. Section 13 in chapter 2 states that the agency may provide coordination, strategic and referral services to people with disability and section 14 states the agency may provide funding to persons or entities. Some of your comments on the last session around block funding we may have the opportunity to explore with you. The effective design and delivery of these functions relies on the agency having comprehensive and expert information and knowledge of the persons whole context and life journey. Seamless coordination is anticipatory of those needs, not just reactive, and the combined service models support participation in ongoing social and economic activities.

Section 31 states the participants plan 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 a critical principle that we all feel very strongly about in the management of chronic diseases and disabilities because of the changing and often degenerative nature of disease and the complexity of health and social situations in which people live.

Section 47, on reviewing and changing the participant's plans as mentioned a moment ago, states that the very nature of chronic disease means that symptoms change. Over time there is typically a greater level of disability and a domino effect impacting family relationships, social participation and economic status.

In section 22—and while there are many shared concerns for our organisations and for others—where we begin to discuss the specifics of age, and being 65 is where there is quite a different perspective, the draft says that a person meets the age requirement under the age of 65 when an access request in relation to the person is made. This section absolutely needs review. It is a reasonable assumption that there has been recognition of that.

While many of the issues that we have highlighted are shared, we have a few comments to begin to draw out the differences with our organisation. The onset and time frame of progression for someone with MS can vary enormously. For many people the symptoms progress 10 to 15 years post-diagnosis or from the onset of original symptoms. On the other hand, someone with motor neurone disease will typically suffer very rapid progression, typically only three to five years from diagnosis to death. People diagnosed over the age of 65—and that is about 50 per cent of people living with MND—rely on the aged care system, which of course is unable to meet their disability needs. The NDIS needs to have a safety net model that provides top-up funding to address those needs that are not currently met in the aged care system.

By comparison, people with cystic fibrosis are usually diagnosed as infants. Initially their parents manage their very complex medicines, physical therapy and dietary needs. Then, as adolescents there is a transition from the paediatric—typically their 16th birthday—to the adult system, and there are ongoing disruptions to education and participation in employment preparation. For many, comorbidities of CF include diabetes, liver disease, arthritis, psoriasis and male infertility. These begin to emerge at about that age bracket. Cross-infection risks can cause social isolation and have impacts for service providers which are not necessarily evident in the pure choice model where there is an expectation that someone can just arrive without any cross-risk of history. In-hospital patient stays are often for weeks at a time and several times a year. They are very common and, sadly, many people end up facing the gruelling prospect of a lung transplant. Age must not be a barrier to access or quality of service, either as 65 or when you are younger, and nor can areas of geographical location, whether services are being provided in the home or in hospital settings.

In conclusion, MS Australia, MND Australia and CF Australia believe the legislation must create and fund a sustainable and accountable role for not-for-profit disability organisations. Our organisations and others like us provide the trusted, local and condition-specific case management and information services that our clients rely on. While some of these may be duplicated by commercial enterprises, there is anecdotal evidence that this commoditises vulnerable people and creates the risk that those of greatest need will continue to fall through the gaps because of the cost of delivery of service. Further, a sector underpinned by expert or continuing, frankly, to be underpinned by expert not-for-profit disability support organisations will continue to provide independent advice to the government on system design, policy and service quality. Our only motivation is the quality of life of our clients. We welcome your questions.

CHAIR: Mr Darabi, would you like to make a comment now? Do you have a comment prepared or would you like to answer questions?

Mr Darabi : No, I do not have a comment prepared.

CHAIR: So your availability is for another few minutes. If senators ask questions of you directly, we will ask them to give them now so that you can escape. That will also go to general questions from the whole panel.

Senator FIFIELD: Mr Darabi, perhaps you would be happy to take us through your experience of cystic fibrosis—the supports that you have had, those that have been what you would hope and those that have not been adequate. It might help inform consideration of the NDIS.

Mr Darabi : In regard to the support that I have tried to apply for, whether it be from Centrelink or housing, starting with childhood that was fine. It seems like, with everything that my parents or the doctors at the children's hospital did, they were adequate with their help. But as soon as I hit adulthood and became independent all the problems arose. The first problem I had a few years ago—three years ago at least—was when I tried to apply for the DSP with Centrelink. That was when they outsourced their service where they would assess if you are disabled or not. I think they do things differently now. But back then when I was assessed, even with medical records and a doctor's note saying how severe the illness was, they said, 'We don't take this into consideration and basically if you can walk you are not disabled.' That is what they said to me. Now it has changed; it has gotten a bit better. Last August I applied and was granted the DSP, so that lifted a lot of weight off my shoulders.

But another problem, the most recent problem I have had, was with Housing NSW and trying to apply for a Rentstart bond loan just to help initially pay off the bond. The housing case manager was fine and understanding, but trying to communicate between them and the Rentstart people was very painful, and they were not very cooperative. I did not end up getting the bond loan because either I had to not sign the lease for the property and give that away or I had to wait until I could find a new place to live, and that was not exactly what I wanted to do.

I guess the other area would be education. In the past couple of years I finished an advanced diploma in sound and music production, and that is an area that I would like to continue investing in. But with what has happened with TAFE NSW and everything that has gone on over the past six months, they have removed the subsidy from the courses I would like to continue with and I have no way—

Senator FIFIELD: Is that a subsidy for people with a disability?

Mr Darabi : I was classified as a Newstart, and that would only apply to people with similar circumstances, but now they have taken away that subsidy and I am not able to afford the types of courses that I would like to be investing in. Other than that, I cannot really say anything else.

CHAIR: Mr Darabi, in terms of the support for these processes which everyone goes through, in the way you have described it, is there a support mechanism through a cystic fibrosis organisation or other groups that can support you because of your special needs?

Mr Darabi : Yes. I have Mr Benji Trieger, who I am regularly in contact with. If it ever comes to a point where I have hit a brick wall I will contact him or similar people, and they will usually be able to progress the matter further. Otherwise I will try to do everything in my power to be able to do that.

CHAIR: In all the discussion around the National Disability Insurance Scheme that is out there, do you see where you fit in all of that?

Mr Darabi : Yes, I believe so. I am not completely aware of everything that is going on, but I am taking my time to try to understand everything that I can. I would like to get further involved with it if I can.

CHAIR: I think it is important that you do, so just take that knowledge and we can help you if you would like to know who to talk to. As a person who has lived with a disability, you have taken the interest to follow up and see what it is about. The committee believes there are many people who have not done that. You have actually done that, so thank you very much. If there is anything that you think about when you leave that you should have told us, which happens to all of us, please just be in contact with the committee. We would very much appreciate that. Senator Fifield, do you have other questions, generally?

Senator FIFIELD: Yes, thank you, Chair. One of the things which I am still endeavouring to wrap my head around in the absence of the NDIS rules, which are still to come, is how the NDIS will cater for people whose disability manifests itself in an episodic fashion, which is the situation, I know, of a number of the people who your organisations represent. People find it easier to conceive, I think, of how an NDIS will support a person with a physical impairment or a significant intellectual impairment—or even a sensory impairment, although that again can be episodic in nature as to the intensity of support required. Feel free, anyone, to jump in. Maybe each of you in turn can just take me through how you would, ideally, see the NDIS structured to support people who have conditions that manifest themselves in that episodic way so that there might be a period of time when you do not need any support from the NDIS and other times when you might need quite intensive support.

Ms Tame : I can see the system supporting people through transition periods—people who have episodic periods of disability that manifest themselves in a way that impacts on their quality of life or on their daily living. So if they are able to apply through the agency for support in some way to minimise the impacts of their disease at that time so that they are not falling through the cracks and so that—

Senator FIFIELD: Feel free to be specific and give me an example: 'This is John; this is what might happen to him; this is what he would need; this is what should be provided by the NDIS if—'

Ms Lydon : I can probably do that, from a clinical point of view—

Senator FIFIELD: Thank you.

Ms Lydon : and from seeing a lot of clients with MS, particularly with relapsing-remitting MS. I have a lot of younger clients and clients across the spectrum. With relapsing-remitting, you might be fine this week and next week have quite a severe relapse. So you may have been walking one week and the next week not be walking. You may get some recovery, you may get full recovery or you may not get any recovery. It depends on the severity of the relapse and what is happening on your MRI—what types of lesions have occurred. I have had clients who have had quite significant relapses and have had full recovery. So for a period of time they cannot walk, but then, with physio and rehab and support, they can get back to walking and then be able to return to the workplace or whatever. So I think that, particularly with MS, there needs to be ways for people to come in and out of the system, because MS is a long-term disease. I have clients as young as 17 but I have clients who are 75. It is a long disease process. So I think you are going to have to have intermittent assessment occur for people like that, whereas, say, with primary-progressive it is more a steady decline.

Senator FIFIELD: The prime interface would be with the health system, I guess—with the relevant specialists?

Ms Adair : Not necessarily.

Ms Lydon : It would be, but also out in the community as well. So a person may need periodic assistance from someone to provide domestic assistance, personal care assistance and transport assistance, but then down the track mightn't need that increased level of assistance. So it depends on the client. It is a very individual and complex disease, MS.

Senator FIFIELD: So we need to have a seamlessness where you can get—well, it might be cleaning at home; it might be some personal attendant care, or a combination of those things and transport, and you might need that for a period of three weeks or four weeks or two months—

Ms Tame : The right services at the right time.

Ms Lydon : Or you may need them ad infinitum. The other thing is that we also look at people from a wellness approach. So we want to try and educate people and help them to develop a lifestyle that will mean that they may not have those types of problems occurring down the track.

Senator FIFIELD: What is the current situation under the current supports, which I guess are provided by the state?

Ms Lydon : They can be quite fragmented. It depends on what local government area you live in. I cover eight local government areas so I do not just cover Lake Macquarie, Newcastle and Maitland. So, depending on where you live—

Senator FIFIELD: Is that HACC funding in New South Wales?

Ms Lydon : Some people get Attendant Care Program funding. They might get HACC funding; they might get support from the Community Options Project. Some could be getting a combination of Commonwealth and state funding. I have experienced quite a lot of frustration at times with putting referrals in and often finding that the funding is not there, that services are at full capacity or that a person might get a small amount of service but it is really not enough to meet their needs. It can be quite difficult. And people get confused. If they have multiple services coming in they do not know who is providing what and they often struggle to navigate that system.

Senator FIFIELD: And from the perspective of Cystic Fibrosis?

Ms Adair : It is something that is a very regular occurrence for our clients. As a simple case in point, someone may require hospitalisation for intravenous antibiotic treatment but, for lots of really person-centred care reasons, prefer to receive that at home. Can they? Will they? Who will attend to them? Is equipment available to them? Who provides that and can the hospital spare it? Is there a qualified IV nurse available to do home care? What if this is a really recent episode, and as a consequence of that a sibling, mum or dad is even more distressed than they normally are? Can they just pick up the phone and ring the social worker and get them in, because they need you now: 'This is not going well for me, now.'

Something else changes—their equipment breaks down—their oxygen saturation. This is not an optional extra. This thing needs to be serviced right now. Do not tell me, 'I'll get back to you next week.' This is essential equipment. We would not allow our hospitals to run out of oxygen. When people are choosing, in their personal setting, to have their care provided through the NDIS at home these are the sorts of guarantees.

Again, these are the sorts of perspectives that I suggest our expert organisations bring to the table. A doctor needs to be expert in the clinic, at the hospital, in their rooms but we see people in their life context in a different way.

Senator FIFIELD: Are those options available now?

Ms Adair : At the moment, if we do not receive funding by the end of March from the New South Wales government we will have no social workers for home care. We will not be able to support John Hunter Hospital and their outreach clinics to regional New South Wales.

Senator FIFIELD: Is that social worker support provided through the health stream or the disability stream?

Ms Adair : That is part of our problem. It actually came through the family support stream of the Department of Community Services. Neither disability nor health departments necessarily pick up social support in the context of family counselling or home visiting—the sorts of programs that we have.

I am very respectful and very grateful for Daniel's presence—it is always difficult to talk about difficult things in front of someone that lives with you—but the issues after diagnosis, for all of our organisations, of the grief and the anger and the fear, does not go away. And with episodic events that revisits differently at different times.

Senator FIFIELD: Where do you see the delineation being under an NDIS between where the health system stops and the NDIS picks up? Would a nurse giving IV at home be on the health side or on the NDIS side?

Ms Adair : Cystic Fibrosis has put together some specific calls for action around the NDIS. We think the answer to that is for the regulations to include a coordination and formal recognition of multidisciplinary teams. Again, in terms of person-centered care, someone does not think about themselves as being a patient in the hospital system, a client of the disability sector or a participant in a community program. We have to design a system to overcome exactly that differentiation, otherwise people are going to keep bumping into artificial barriers or falling between cracks because they do not tick a box or there is not an adequate description. That is what the NDIS can overcome. We think that can happen with the participant plan and the case management.

Again, in terms of respected individual choice, it can then be up to the client to decide whether the dietician is their private one or whether they are quite happy to continue seeing somebody provided through the hospital system. But the coordination, the design of the system—and, yes, Senator, I can only begin to imagine the funding complexities for the bureaucracy—that is the goal.

CHAIR: Provided there is one of those people at the hospital.

Ms Adair : Absolutely. We have social workers at John Hunter on the wards but not in the CF clinic.

Senator FIFIELD: Mr Opie.

Mr Opie : Our organisation is a little different from both MS and cystic fibrosis in the fact that motor neurone disease is not episodic. There are three to five years between diagnosis and death and in that time rapid paralysis sets in and eventually asphyxiation, and whether people can talk, walk or use their arms depends on where the disease starts. We were talking before about services. I have just made a few notes about the health system and where it fits in with the National Disability Insurance Scheme—and I am buggered if I know.

You mentioned the meeting in November with David Bowen up here. I asked the question: how will equipment and how will Enable New South Wales fit in? He said, 'We'll be taking it over.' I have spoken to Enable and they have not actually planned. They do not know what is happening with the NDIS. But I would see the NDIS as being the overarching role. Ninety per cent of our members choose to die at home so that is 99 per cent of the time not in clinics, not dealing with the department of health but dealing with community services with allied health professionals on the ground.

I have to give a plaudit to the New South Wales government, to ADHC and its disability services, with the Stronger Together program over the last seven years. It has really worked comprehensively to include neurological disease within disability services, which it was not but now is.

We specialise in rapid degeneration. We were talking previously about collaborative work with, I think, ParaQuad. You were talking about collaborative agencies—a couple of examples, dealing with MS and muscular dystrophy that we have through the New South Wales government. One example is a flexible respite program for people with neurological disease. It is different in that it is not just bricks and mortar; as far as respite is concerned, it is what the family want. The cost is from approximately $800 to $1,000 each year. With respect to rapidly degenerative equipment response, we provide equipment to our members. We have seen an opening there for all other neurological disease organisations where they have episodic cases. We are meeting with MS and the Muscular Dystrophy Association next week to actually put forward a plan to provide equipment to people with that rapid progression for up to three months, when Enable New South Wales should be able to step in and provide the equipment services and things like that.

As far as case management is concerned, we provide a lot of education to allied health professionals and disability workers, doctors and nurses. We are continuously going out, not only in regional areas but also in the city, to organisations and introducing the case manager to the occupational therapist. They are all in the same house; they are just not in there together. They are all working with the same client and they have no idea who the case manager is and the case manager has no idea who the OT or the speech pathologist is. Taking it away from clinics and taking it away from the medical based or medical focus and putting it out into the community we see as being essential.

As I have mentioned, 90 per cent of our members prefer to die at home. The only way they can do that is with a multidisciplinary team, which we pay for in some hospitals but only in clinics.

Once they go outside the clinic, that is it, we have done our duty, there is nothing more to do. So our focus is around education, and education and information with a disability support organisation, if you cannot do anything else it is education and information and advocacy. If we could not provide the equipment, if we did not have regional advisers around the state providing information, not case managing by providing information to the family and to those support workers, there is not much point in us being here.

So I think the focus on community as opposed to the focus on the system is the most important point that I would like to give this committee. It is where people live and it is, I gather, where the NDIS wants people to live, not in the hospital system.

Ms Adair : As another case in point, at the moment with equipment hire and access through Enable you can get machines permanently at home but not portable ones. How does that make sense?

Ms Lydon : And you may well need a chair, as you said before, but it might take you six to 12 months to get it at present. A person I see at the moment is waiting for a bed at home and he has been waiting for three months and Enable went on holidays and his wife has been paying $300-odd a month for hire of that equipment because he cannot get the bed. It is the first time he has had a decent sleep in months and months. He is now sleeping about four to five hours a night as opposed to probably two.

Ms Adair : Again that role for us as organisations back to government around things like compliance that is ongoing design and the efficacy of the systems in our local communities and where things are. We all know NDIS will never be right, it has got to continue to evolve and to respond and it will be different in different places for different people for different reasons. It is these real stories that happen that the DSOs can formally feed back through if they are formally recognised in the system. This work has to happen. Government need not replace and create a whole new set of infrastructure when our organisations are available to do the work and have been the experts in the field for 10, 20, 60, 80 years, whatever it has been.

Senator FURNER: On MS, you identified some concerns around section 47 in reviewing the plans. Could you give us some scenarios around why that is an issue for you?

Ms Tame : Reviewing and changing participants' plans?

Senator FURNER: That is right.

Ms Tame : It is the nature of the chronic disease and the interplay between the systems and someone's quality of life. As we said before, the right services are needed at the right time, so the response to changing plans needs to be rapid. Also plans need to really be individualised to the participant. With MS specifically there are hidden symptoms of fatigue and a lack of insight that can drive a family into breakdown. So the carer burden and the financial loss and so forth can drive social problems or impact socially on people. The plans and the input into plans and having specialist organisations that can help inform will make it easier for people or make access available when it is required.

Ms Lydon : With MS often, particularly people with secondary progressive MS or progressive MS, there is a huge carer burden, as you said. Out in the general service provision, Mr Opie talked before about we give a lot of education to community organisations, allied health professionals. I often go out and give education to people providing CATS packages in those types of things. A lot of the generic workers do not fully understand the complexity of MS. I do not like talking about people from the point of view of the disease, but often people with MS do not tend to acknowledge their disease or the impact it is having on their carers. That can be for a variety of reasons. They have cognitive changes. At one time we thought the cognitive changes happened a long time down the pathway but now we know that they happen quite early in the disease. You can look very well but you can have quite significant cognitive changes happening. The client does not always acknowledge that they have a lot of issues occurring that are causing problems with the family. They do not acknowledge that they are not making it particularly easy for people to care for them. They often struggle to come to terms with their disease and they do not always see that their disease has progressed as far as it has. I do not know whether I have explained it adequately.

There are also a lot of other hidden symptoms, as you said. Fatigue and depression are real issues with people with MS. They are seven times more likely to commit suicide than the normal population. It is a real issue, and that can be for a variety of reasons. It can be because of what is happening in their brain, where the lesions are placed in their brain, but it can also be reactive type depression—because they have lost their job, because they are not able to stay in the workplace, because their relationship has broken down and their partner does not understand their MS or their family members do not understand. It is a very complex disease. It needs to be assessed, as I said before—

Ms Tame : Case management, assessment, planning, monitoring and reviewing is ongoing.

Ms Lydon : They come and they go with us. We often tend to hear from them when it is a crisis, when we would probably prefer to keep in contact with people on an ongoing basis.

Senator FURNER: The legislation provides for a participant's plan to be amended, but what you seem to be suggesting is that it should be more spontaneous. Is that what you are indicating?

Ms Tame : Yes, the legislation states that it could be amended, but how often? Are there going to be rules around how often the plans can be looked at?

Senator BOYCE: Will there be a waiting list to have your plan amended?

Ms Lydon : And who is reviewing your plan? I guess that is the crux of it on occasion as well. For example, I recently referred a client through the Community Care Access Point in Sydney, which is how I have to make a lot of referrals these days. I specifically requested an OT assessment because the person does not only have MS; her daughter has cerebral palsy and a quite significant disability because of that. So there are huge problems occurring in that family. The single mother has lost her job and cannot stay at university. There are lots of things happening. She specifically asked for a holistic assessment and the person at the office in Sydney, for whatever reason, possibly did not ask the right questions. That person has cognitive issues as well and she is quite a proud lady, says she does not like to admit that some of the problems that she has are in existence. They sent home maintenance out to see that lady. It took a lot of lobbying and advocating by me to get people out very rapidly to see that person. She waited for about two months for the initial person to come out and see her. She waited three weeks for the assessment from when I put the referral in for the phone assessment. That is only on the phone. They are not looking at the person; they do not see what is happening.

Senator FURNER: What are your thoughts on the consultative process of the NDIS? How has that been rolled out?

Mr Opie : There has been minimal information available, as I mentioned. The November meeting up here was the only time when David Bowen came and presented. National Disability Services have had a couple of forums. The frustrating thing for me is to have a basic plan. There are 4½ months to go. We need to have something that we could start to work towards. That would be much more valuable than listening to how it will be done. There is the person-centred focus.

That is something we should have been doing decades ago if we had not been doing it already. I am not even sure who the NDIA manager is for the Hunter region or the ACT at the moment. They may be here. I do know that Barwon have a manager and I know that they have met with a lot of agencies. I do not know about the ACT. Things like that, where we can go and hear how it is evolving and moving ahead, would be useful. At the moment there is just the website, which is fairly basic information.

CHAIR: Does the website have an interactive element so that you can ask questions direct? If you have questions—and you obviously do—from your clients or your own questions, what is the process for asking those questions?

Mr Opie : Basically, it is through the NDS, I think—that is the most obvious way. They do have newsletters for regional areas. They are pretty few and far between at the moment, but there are newsletters that you can register for. I may be wrong, but I have not found a Q&A component on the website.

Ms Adair : I ring the NDS and we do not know; we have not heard yet. By comparison, the ACNC, which probably has infinitely fewer implications for most of us, does a marvellous job at communicating, in my view. There are regular subscriptions and updates, and yet it probably will not change our world anywhere near as much as what this will and, if it does, it will be much further down the track.

Ms Lydon : A lot of the people with MS that I talk to ask us for answers, and they are asking me. I do apologise, but, purely because I am on the run all of the time, I have not read the entire bill. I am a person on the ground, but often people are asking about it in the support groups. I visit five support groups in the Hunter area. They are asking me questions and I am saying, 'I'm really uncertain how this is going to impact for you.' They are very interested, but they do not have a lot of faith sometimes in the system, which is unfortunate.

Ms Adair : Another thought, and it is kind of obvious, is that a lot of our clients do not consider themselves as being disabled. Disability is about physical things that they see or intellectual disability. It just occurred to me, but that is an issue for us.

Ms Lydon : It would also be the same for us with a lot of the younger people with MS. They do not really want to see themselves as having a disability. One lady said to me the other day, 'I have a condition. I don't have a disability.'

Senator BOYCE: And they do not have carers, either.

Ms Lydon : No, and younger people particularly are still working, but they do have episodic times where they are not managing, and fatigue in particular is a huge issue and has an impact on their work. But a lot of younger people, and particularly younger men, feel that way. I have a young boy with a chronic condition. They do not really want to know. When they are well, they just want to be well.

Senator FURNER: Is that a result of stigma at all?

Mr Darabi : I generally do not refer to it as a disease, because that sounds contagious to me. I generally call it an illness whenever I talk about it. I feel there is a small stigma with cystic fibrosis just because it is not very well understood. You cannot physically see that I am sick, but I can go from being perfectly healthy one day to requiring hospitalisation the next.

Ms Adair : I am going to take a risk here. It might also be possible that you have seen Daniel's drink and presumed that is his personal drink of choice. It may well be a very deliberate nutritional decision. Again, it is about disability and choice, with a dietician informed, evidence based decision, potentially.

CHAIR: We will ask the department and the information sharing and we will get back to each of your organisations with whom you can speak and who holds the position in the Hunter, and all those people with information. We will get that back to you as soon as we can.

Senator FURNER: Daniel, just on section 47, reviewing the plan, do you have a personal view on that aspect at all? This is where the participant enters into a plan about their aspirations, their goals and how, in your case, your illness may need to be recognised and managed. As we have heard, there will be occasions when that needs to be altered. Can you share your personal views on that?

Mr Darabi : I have not read through it. I do not understand it fully but in regard to personal dreams and aspirations, I do not really have any because I have been forced to limit them. The doctors have told me that without a lung transplant I have a 50 per cent mortality rate in the next five years, so I am not exactly making any plans and basically, I am not allowed to, I guess.

One thing I wanted to bring up was any assistance with fertility, as it affects both male and female in cystic fibrosis. My girlfriend would like to have my children and I would prefer to adopt, but either choice does not seem suitable financially or is viable in any way to both of us, whether it means IVF or having to wait 10 years to be granted adoption papers or whatever that means. So, even in regard to that, I do not know.

Ms Adair : It may be that our professional understanding of what case management and planning are is not evident to a person in a particular set of circumstances. What Daniel described before of his relationship with Benji we might label in a service model sense as case management, advocacy, counselling, all those sorts of things, but I am not sure that that sort of language is necessarily clear yet particularly to people living with chronic illness, as distinct from perhaps advanced physical or severe intellectual disability, who often have guardianship involvement. There may be some language around that that is more familiar in different circumstances.

Senator BOYCE: Mr Opie, did I understand you to say earlier that MND has a system of rapid response provision of equipment?

Mr Opie : The service? Yes.

Senator BOYCE: Who funds that now?

Mr Opie : Eighty per cent of our funding comes from donations and bequests, but more recently ADHC have topped up our equipment pool funding

Senator BOYCE: ADHC is?

Mr Opie : Ageing, Disability and Home Care of New South Wales.

Senator BOYCE: New South Wales, so it is state government funding.

Mr Opie : Yes.

Senator BOYCE: How would you see something like that working under an NDIS? What would change?

Mr Opie : We would become a competitor with other agencies. There are other agencies that provide equipment but nobody in the rapid response area. All of ours is free of charge so, at the moment, nobody else wants to get into that role as well.

Senator BOYCE: Funny, that.

Mr Opie : But in regional and remote areas we see it as being a real issue. Obviously, they will be cherry picking. People will come in; for-profits will come in. There is no problem with for-profits coming in. We would just become a competitor and it becomes another revenue stream for us as well.

Senator BOYCE: So you would charge.

Mr Opie : We would charge for it.

Senator BOYCE: And you would have people paying from their funding package.

Mr Opie : From the NDIS funding package, yes. At the moment ADHC has given us top-up funding for the next three to four years to work with MS and muscular dystrophy to get that rapid response for particularly MS and muscular dystrophy for those episodic times. For us, it is all the time.

Senator BOYCE: Because if you are relying on the government system the chair arrives six months after you needed it.

Mr Opie : Enable have improved dramatically—there, I have said it—but it is still not fast enough for people with motor neurone disease.

For people with motor neurone disease, three months may mean the difference between a walking frame and an electric wheelchair. The same applies to communications devices such as tablets and things like that; the change is so dramatic. It is the same with episodic conditions, where people fall off a cliff but then they plateau so then who picks up the people or how do service providers fill in that gap? But it will be interesting because for-profits are there for a profit. If in regional and remote areas if they are not going to turn a profit I think it will mean they will be cherry picking in a big way.

Senator BOYCE: That is a problem that was raised particularly in Townsville in terms of towns where there are perhaps one or two people needing a service of some sort. Would any of you would like to comment on how that should be dealt with?

Ms Adair : I think that is potentially a part the role of block funding. It is possible that we would be accountable for those safety net guaranteed service provisions to do that sort of work. I do think that is one of the roles. And that is the risk. We have seen it in the employment services sector. There are enormous differences in the availability and efficacy of employment placement. There are some clients that are just hard, and the for-profits do not go there.

CHAIR: And they never have.

Ms Adair : That is the difference when our only interest is the health and well being of our clients.

Mr Opie : I think that regardless of whether there is block funding, it is a golden opportunity for all of us to make a huge difference. But I do not see it as neither right nor wrong about for-profits cherry picking. I think that is the nature of the beast and that is what we have got to deal with as a not-for-profit now. As I said, 50 per cent of our clients are over 65 when they are diagnosed so we will still have 50 per cent of that client base that we will have to raise funds for. It is just another revenue stream for us in some ways.

Senator BOYCE: What about meeting the needs of people in remote and regional areas?

Mr Opie : That is the reason why we are set up. It is what our Constitution says. There are tax obligations around how does a fee-for-service for equipment affect our charitable status? Obviously over the last two years there has been a court case that says specifically that if the money goes towards continuing the mission of the organisation then there is no problem, but we are going to have to be very careful about that and how it affects our organisation because a part of our arm will be for-profit because we will have to charge for that.

Senator BOYCE: Does MS Australia have any more concerns than currently around the provision of services to rural and remote areas?

Ms Tame : We just need to remain person centred. We need to keep bringing the decisions back to that person centred approach of what people need when they need it.

Ms Lydon : Certainly there are differences between people living in remote areas and people living, say, in the metropolitan areas. I have issues with that on a constant basis. Some of our other regional workers struggle with that. From a point of view when you are talking about, I have worked for both not-for-profit and for-profit organisations in my career path. There is good and bad in both types of organisations.

Senator BOYCE: You raise the issue about half of your clients being over 65, Mr Opie, and all of you have expressed your views in terms of having a cut-off point for the NDIS. I know that Epilepsy Australia has also shared this view. I understand there is now a neurological disorders alliance or some such thing. Could any one of you tell me a little bit about that?

Mr Opie : We actually kicked it off in New South Wales as a group of six and it has since broadened to a national base.

The Neurological Alliance met—I think it was in October last year down in Melbourne—to put forward a proposal, firstly, around our clients and whatever we have in agreement and, secondly, about the organisations and what role we have in an NDIS environment. There was input into the NDIS from the national Neurological Alliance group, but really we are so disparate and yet we have so much in common. At one stage we were even looking at centralising all our services so that all back-of-office could be shared for all organisations and, particularly, for the larger organisations to provide those regional services. Victoria is the one we all look to as one of the best models out there. Because of the fact there is only one human services department there is the individualised funding for people with disability at the moment, but even they have had their problems—

CHAIR: There is not a lot of remote in Victorian industry.

Senator BOYCE: A Victorian would probably disagree with you.

Mr Opie : My counterpart in Victoria can drive to the border in about four hours from Melbourne—

Senator FURNER: More like three!

Mr Opie : Three, sorry. He is a very conservative driver. I work for the Heart Foundation in the Northern Territory. I understand what regional and remote is like and, no matter how much we whinge about services in Newcastle, Sydney and Wollongong, they are gold-plated compared to the other side of the divide.

CHAIR: Compared with Tennant Creek.

Mr Opie : Going back to motor neurone disease, we have regional advisers that are not case managers. They work with the families to help navigate the health and disability sector, and we have put more in regional areas in the last two years specifically for that reason: to bolster services in regional areas, rather than take it away. It is an expensive thing to do, but it is about equity, not equality, for us.

Senator BOYCE: It is quite bizarre that the government is funding you to pay people to help people deal with the government, isn't it?

Mr Opie : Eighty per cent of our funding comes from donations and bequests, so—

Senator BOYCE: That maze is the question that comes out over and over, and the fact that they butt up and overlap in some places while in other places there is a big gap.

Mr Opie : Even more bizarre is that we provide three multidisciplinary clinics in New South Wales with around $25,000 each year to fund the clinical nurse coordinator, because multidisciplinary clinics are a proven method of increasing longevity, increasing time at home, increasing services and stopping an emergency before it actually happens. We are receiving 20 per cent of our current funding from the department of health and paying them $75,000 to $80,000 to provide a clinical nurse coordinator into the department of health. We have not quite worked that one through yet, over the last seven years, but we keep trying.

CHAIR: It appears in both sets of books I think.

Mr Opie : Yes.

Ms Lydon : Certainly, I am funded by us to attend John Hunter MS clinic, but I do not think we receive any funding for that. The bulk of our funding comes from donations.

Senator BOYCE: There have been some concerns raised about the implications for workplace health and safety if individuals are paying their support workers to come into their homes. Do you have any comments? You have all commented that people prefer to die at home or be treated at home or whatever. How does that work now, and can you see any concerns about individuals being the ones who are employing the workers, for example?

Ms Adair : There are two angles to that question. One is the nature of the employment relationship and some underlying assumptions that the purchaser of services in that scenario knows how to negotiate, has the financial literacy and experience to do it, has the communication skills to say, 'I am not happy with this,' and is empowered to say, 'Actually when you said you were coming at eleven o'clock that's really important to me.' As managers, managing our staff is the most difficult thing and that is exactly the nature of the relationship. That is one perspective, as well as how we prepare our clients appropriately and adequately to be engaged—

Senator BOYCE: To be employers.

Ms Adair : To become employers. One of the services we provide is to train homecare workers, who then go into homes to deliver the specialised percussion physiotherapy style of treatments. There are a host of issues around adequate surfaces, security, dogs and those sorts of things. So we continue to navigate them. Is it clear and confident and does it work well at the moment? Probably. Will it be so with fewer controls and an awful lot more providers? It is risky. Some of the options are around brokerage models, and in this community there are two or three people we have checked out and vetted and we can assure you that there are systems in place and quality assurance and compliance standards and things. They are going to be critical.

Mr Begbie : A lot comes down to the ARS and the four options that have been put forward for discussion about quality assurance. I think option 4 was open slather. There is a obviously a need for some quality assurance. If a person is employing somebody to come into their home, that person should have the wherewithal to conduct a survey of the house or be able to do those things. It will not be all open slather; there will be some sort of regulation involved.

Ms Lydon : As long as it is not overly regulated. I have worked in aged care for 15 years as a manager and struggled with that system in some respects.

Senator BOYCE: Because it is too regulated?

Ms Lydon : It is extremely regulated and very problematic for the people working in it—if you want to provide a good, innovative, holistic service. From the point of view of workplace health and safety, I could see that there could be some issues if you have untrained people coming in and you have a person with a significant disability. Where you have vulnerable people who could be open to exploitation because of their insight issues or those sorts of things, that could be a problem as well. But I can see room for change and services being a lot more flexible in their care delivery, where sometimes now they can be quite inflexible. As you said, you need to look at the timing of services and things with particular conditions.

CHAIR: Is there anything you want to share with us now that we have not touched on, or would you like to provide further information to the secretariat?

Mr Opie : I would like to emphasise the over 65 cut-off. It is not all Australians.

CHAIR: The arbitrary nature of saying 65—or 70 or 62—came out in the submission. You cannot take that line.

Ms Adair : I will mention two things briefly. Firstly, the inclusion of preventive health and fitness equipment and exercise programs is vitally important for us. The other issue is that, just as age is an artificial barrier, so too can geography be an artificial barrier. Because of the very specialised nature of services that are required, we have, for example, clients in northern New South Wales attending clinics in southern Queensland. So we cannot allow things like postcodes to get in the way—'Where is your case manager?' Those are the sorts of jurisdictional issues that we need to be mindful of as well.

CHAIR: Thank you so much. It was very valuable to hear from all of you. As I said, if you think there are things we should know that you find out about or think about when you leave—which happens to me all the time—please be in contact with the secretariat. I will get back to the secretariat with that information about who you ask questions to and who the local Hunter manager is.

Proceedings suspended from 12:04 to 13:00