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STANDING COMMITTEE ON COMMUNITY AFFAIRS
Funding and operations of the Commonwealth State/Territory Disability Agreement
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STANDING COMMITTEE ON COMMUNITY AFFAIRS
Senator CAROL BROWN
Funding and operations of the Commonwealth State/Territory Disability Agreement
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STANDING COMMITTEE ON COMMUNITY AFFAIRS
(Senate-Wednesday, 22 November 2006)
CHAIR (Senator Humphries)
JACOB, Ms Alison
Senator CAROL BROWN
NEHRMANN, Mr John
WILKINSON, Ms Robin
NEWELL, Professor Christopher
REYNOLDS, Ms Margaret
Senator CAROL BROWN
GUY, Alderman Mary
Senator CAROL BROWN
HINTON, Ms Teresa
LAMB, Mr Daryl Graham
CLARKE, Ms Mandy
Senator CAROL BROWN
Senator CAROL BROWN
VICKERS, Mr Matthew Francis
PEARCE, Mr David
- Mr Nehrmann
Content WindowSTANDING COMMITTEE ON COMMUNITY AFFAIRS - 22/11/2006 - Funding and operations of the Commonwealth State/Territory Disability Agreement
CHAIR —I welcome ACROD Tasmania, Alderman Mary Guy and Tasmanians with Disabilities. Do any of you have any comments to make on the capacity in which you appear?
Prof. Newell —I am an academic in the School of Medicine at the University of Tasmania.
CHAIR —I thank each of you for appearing today and for finding the time to present us with a range of views on issues to do with disabilities in Tasmania. You have all had the information on parliamentary privilege and the protection for witnesses. I do not think Ms Reynolds needs that information, but I am sure it is useful nonetheless. The committee prefers to have evidence taken in public but if you wish to have evidence presented in camera we can certainly consider taking evidence in that mode. We would like to ask you questions, but of course we would be happy for you to make some opening presentations to the committee. We might start with ACROD, then move to Alderman Guy and then Tasmanians with Disabilities.
Ms Reynolds —I welcome the opportunity to sit on this side of the table. I feel that my appearance today is very much secondary to the appearance of my colleagues because ACROD has already appeared before you and presented its submission. This was an opportunity for me to restate some of the issues that ACROD nationally had made and also to refer you to a number of issues that are particularly relevant here in Tasmania. The first thing that I wanted to do was to seek permission to table an ACROD Tasmania document, which is the Disability impact statement on the Tasmanian state budget of 2006-2007. There are a number of copies available but I am not sure that there is one for every member of the committee. My apologies.
CHAIR —We are happy to receive that document.
Ms Reynolds —This document is important because it reflects the Tasmanian government’s commitment to a whole-of-government approach to disability policy planning. My colleagues, particularly Professor Newell and Robin Wilkinson, were very involved in advocating a human rights approach to disability policy planning across all areas of government. In Tasmania we are trying to change attitudes; this is not a question of people who want to do the right thing planning for people with disabilities, it is about using the expertise of people with disabilities themselves.
Unlike the Tasmanian government, ACROD does have a number of recommendations because we believe that the CSTDA does need a number of changes and we would like to see the federal government playing an increased role along the lines that it is already doing in mental health and aged care. We cannot help but contrast the differences in terms of the proactive role that the federal government plays in those two areas. I know federal and state arrangements are always controversial, but I do think there is a strong case, given the increasing rate of the ageing of the population and the increased likelihood of people living with disabilities. Over the coming years it is of prime importance that the federal government take on a greater share of responsibility.
I would like to run through a few of our recommendations and comment about their applicability in Tasmania. The development of national benchmarks and annual targets for the provision of disability services is very significant nationally but it is particularly important in Tasmania, where sadly, with the best will in the world, the Tasmanian government is too frequently reacting to crises rather than forward planning. We do believe that until there are national benchmarks and targets there will be a tendency for Tasmania, like other states, to be reactive rather than proactive.
Substantial additional funding over the life of the agreement to address existing unmet need for services and anticipated demand growth. In Tasmania you have already heard some figures about the numbers of people on waiting lists, but a large number of people have simply given up. They are not on waiting lists perhaps or they are still sitting on a waiting list. I know my colleagues will talk more about this.
A revised indexation formula that reflects the real and unavoidable cost increases incurred by service providers. I will give just a very small example that has occurred in relation to service providers. There have been some changes in the requirements of all service providers needing to provide ancillary certificates for transport of clients, and that is at a cost of nearly $100 per driver. That is an additional cost on service providers that is not recognised by our grants and contract service agreements. That is a concern for Tasmania.
Well-developed evidence based planning with improved data. Again, from some of the questions that were asked here this morning, you can see that it is not easy to get relevant data about Tasmania. Many of us are involved in some, I hope, educated guesswork—certainly Professor Newell is involved in more than just educated guesswork. From an ACROD perspective, I have conducted a couple of surveys over the last two years of our members to try to get some details that do not seem to be available from a state government perspective. For example, ACROD Tasmania estimates that we are providing about 70 per cent of all service delivery to between, approximately, 15,000 and 16,000 Tasmanians.
CHAIR —Do you mean ACROD is providing that?
Ms Reynolds —ACROD members are providing that. The evidence that was given was that 22,000 people were living with disabilities. That is quite a considerable gap in terms of people not receiving any services at all.
Finally—and I know I am a bit of a broken record on this one—public financial and performance reporting that is transparent, detailed and comparable across jurisdictions. We work very well with the Tasmanian government, but we have had an ongoing debate about budget accountability. When you read budget paper No. 2 in Tasmania you will find that disability expenditures and allocations are hidden within the health and human services statistics overall. You can turn to a page and find out how the dollars are allocated for children and families and for housing—many smaller programs than disability services. We now have the figures, but $117 million is not itemised in budget paper No.2 because of administrative arrangements. We feel that is not acceptable. We agree with the Productivity Commission that there should be full transparency and accountability. It makes advocates’ jobs very difficult if you do not know what you are advocating for. You can say we need more dollars, but when a parliamentarian comes back and says: ‘There is $117 million in the budget. What are you complaining about?’ if you can’t point to how it is being spent then it makes life very difficult.
CHAIR —Thank you. Alderman Guy?
Alderman Guy —I am representing—after a meeting on 5 and 6 October in Adelaide—the ministerial advisory councils across the states and territories. They have been meeting as a group for six years and never before have we had any input into the CSTDA or where it was heading. In fact, we believe in many ways it really did not know where it was heading. With the onset of the new agreement, the ministerial councils decided that we should have at least a strong say in the preamble, because the preamble should be a set of principles by which the agreements are based and set. We believe that the groups do represent the states. The majority of them do have great networking within their own states and territories, which is very important, because we do get a chance to talk to people with disabilities, their families and other groups. Most of us work within the departments as well in one way or another. So we have a strong networking and we get a great feel for what people are saying and the lack of the great unmet need within the community. That is right across Australia; it does not just affect Tasmania.
Tasmania has not had any real input into any of the CSTDAs as far as our people with disabilities or the networking agencies are concerned. This is the first time that we have been heavily involved. Part of the outcome from that meeting in October, which has been followed up, is that we now have state agreements from all of those networks to endorse the work that was done in October to say what we would like to see included in the preamble; we want to strengthen the preamble to recognise people with disabilities and we want to see a whole-of-government approach. I have heard that today quite regularly. It is also a human rights issue for people with disabilities, and the preamble should recognise that. Services should be meeting people’s needs rather than activity outcomes that people believe they can measure. In terms of each person with a disability, an outcome may not be what they consider a quality part of their life. It might look good on paper for the department issuing the funding, but it does not mean that the person has real quality of life in terms of what they want out of life. That sounds a bit confusing. I am sorry.
It is simply saying that the majority of people with disabilities are now starting to realise what they want. The world is changing, and from the CSTDA 3 to this new one we need to start recognising the differences—the differences in government policy and in the way people are interacting across the country. People with disabilities are starting to become better educated. They are starting to recognise what they want rather than what they are being told they want, need or should have, and so they want further input into that. I noticed our state reps spoke about individualised funding. It was said that that started here five years ago. That is not quite correct. It started 15 years ago. I have been on one of those packages for 15 years, and I operate my own service. It does not go through a non-government service. It does not go through a government department. I run my own service. I have my own board. I receive the funding. I was concerned about the transportable part, but I will take that up later.
It can work. Many people with disabilities can operate their own services, as long as it is done with the same accountability as we expect from non-government services. We should be able to choose the people who work for us, the people that come into our homes, the types of service we want, when we want it and when we do not want it, because services can be very invasive. We also had a great concern about the emphasis on the wording of specialised services, because there is a great waste of money in that; many of the existing services could meet many of the requirements, if the services themselves were made to be more accountable and much more creative in the way they deliver their services. Often there is no need to set up another infrastructure, which is at a great cost, when it could be done within the existing infrastructure and people could then use that infrastructure. The service they receive can be different. It does not have to be the same as the types of services usually delivered, but it can be much more creative. It can meet the people’s own needs and it gives a person a chance to experiment within their own lives, which is what everybody does. It would also help to alleviate many of the crises in respite, because if many more people with disabilities have more control over their own lives when they get their services the need for a primary support person—essentially a family member—would really not be there. They would go back to what they were originally intended to be, and that is part of a family.
Our main concept is to have a great deal of input into the preamble to set up a set of principles, which will be the overriding principles that then form the basis of the majority of the agreement, recognising, firstly, that people with disabilities are Australian citizens and they have a right to have all of their human rights elements met, the same as other Australian citizens, and they have a right to choose the way they wish to live, that people who need our protection and who do not have the comprehension to be able to make those decisions are well supported and that the people making those decisions for those people have the right intentions rather than doing so because it is a job or it makes people feel good.
CHAIR —Thank you.
Ms Wilkinson —Thank you for the opportunity to speak. I would like to start by asking you a question. Do any of you have to let strangers into your home, whether you want to or not?
Ms Wilkinson —That is a right that you have that I do not have. Because I need personal care services I have to let strangers into my home, and not only into my home but to do very intimate tasks. I want to stress the vulnerability of people with disabilities and the need for getting enough counterbalances in place, for example, so that if someone steals your drugs you know exactly what to do and how to deal with it. You need to understand that vulnerability. Stealing drugs is a very serious issue. Fortunately, when I had some of my drugs stolen they were not morphine based, which meant that I could get others; but if any of my morphine based medication was taken, I would have no redress to get some more. I wanted to start with that. I also want to reinforce some of what Mary was saying. We have a phrase ‘nothing about us without us’. We think that is a really important starting line. If any issues concerning disability are being discussed in any arena, we need to be there.
It was very interesting to hear the state government’s response to some of your questions. I had a five-year waiting time to get extra personal care for hydrotherapy, which I consider a really basic need. It was a health need, and I need personal care to enable me to do that. There was a five-year wait for that. I am also concerned about some of the Commonwealth government’s emphasis on family, because a lot of people with disabilities do not actually have family. So you do not have anybody else, if you like, batting for you in the same way. Since my parents have died I have been really aware of that issue.
Following up on what Mary said, as soon as I need something like personal care services, I actually become a state citizen and not an Australian citizen. That is a concern for me. If you write to the Commonwealth government pointing out some of these predicaments, they refer you back to the state minister and the state minister refers you back to the Commonwealth, so you end up in no-man’s land. That is of great concern to me. I have a strange lifestyle, but probably not as strange as some other people’s on this panel, in terms of going interstate and doing other things. But I do not have the portability of my personal care services. Also, it depends which program you are funded under as to how your service is actually delivered. Some of my personal care comes under HACC, Home and Community Care, where I have no flexibility, and some of it comes from disability services now—just in the last few months. They are very precious hours, because they are sort of portable.
There are those sorts of issues that are really important for people with disabilities. I have not got the answers. I am just putting the issues before you as I see them. There is also the extra cost of living with a disability. I am old enough to go back to the 1967 bushfires in Tasmania, when my mother did post-bushfire relief work. For example, there were women who needed to have their arms covered up because they had been burnt. The cost of shirts for them was about $20 more than for sleeveless shirts. That just gives you some idea of some of those extra costs of disability.
I would like to see some more emphasis on universal design in all areas of life. If you make it accessible for people with disabilities, you have usually made it accessible for your whole community. Those are some of the issues that for me are really important. I wish I had some answers, but it is the inclusion issue that is really important; otherwise other people make decisions about our lives. Unfortunately, our lives are very governed by funding and the goodwill of governments, which seems to me to be fairly inadequate.
CHAIR —Thank you.
Prof. Newell —I might start by giving some background. Tasmanians with Disabilities Inc. is an organisation for and of people with a wide variety of disabilities. I am very privileged to participate in an organisation that really advocates for the rights of Tasmanians with disabilities. I can go back to the International Year of Disabled People in 1981, when I had the character forming experience of doing work in a sheltered workshop. I still cannot cope with KFC and I still cannot cope with the little refresher towels. I learnt a lot about disability and the way in which we were regarded then. During IYDP I also learnt a lot about ‘Nothing about us without us’. My frank assessment, having written over 200 books, articles and papers, is that people with disabilities in Australia are probably worse off than during the International Year of Disabled People in a variety of ways.
Last year, with my colleague Dr Gerard Goggin, I wrote a book called Disability in Australia, which looked at the way in which people with disabilities are construed as ‘other’—outside of the nice, the normal and the natural. We think, ‘Thank God I don’t have a disability.’ Disability is about the ‘other’ rather than the ‘us’. We are so used to disability in terms of ‘special’. We never actually think that people with a disability form 20 per cent of the Australian population, as you know.
I would suggest that one of the main reasons that we construct even the problem of disability is because of the everyday relationships where we either do not know people with disabilities as a valued part of our lives or we have never experienced people with disabilities as being experts, professors or vice-chancellors—you know what I want to be! Some of my work has looked at what it would mean if we had a person with a severe disability as a Prime Minister or as a Premier. Usually people walk out of the room at this particular stage because it is such an outrageous conception.
Senator PATTERSON —Roosevelt was in a wheelchair, wasn’t he?
Prof. Newell —There was a book published about Roosevelt called FDR’s splendid deception. He hid it from the American electorate in order to get elected and keep in power. That poses some of the issues that we have about the metanarrative of disability and people with disability as ‘other’. It is something I struggle with, amongst other things. Those of us who came to this room today had to come up a special entrance—a special way. The attendant almost got lost. These are the norms that we build into our buildings and everyday services that then create disability. There is a significant scholarship in the disability studies literature pointing to that.
Related to that is the notion of cost. Is it any wonder that people with disabilities cost more, when our norms build in particular ways of disabling people? All of this—I have to add a quote from my book—is found in Disability in Australia, which was very interesting. I took the trouble to send it to a variety of parliamentarians when it was published. It was published by UNSW Press. It is the first book in Australia co-authored by a person with a disability about disability. We are so used to people without disability speaking about people with disabilities. I am sure that you have had many people appearing before you in this inquiry. If we had a variety of people turning up to speak about women and, for example, only men turned up and spoke about women, I would like to think that there might be a bit of a stir.
Senator PATTERSON —Or mostly when we speak about disability—
Prof. Newell —That, Senator—
Senator PATTERSON —It is a credit to you two fellows.
Prof. Newell —There is a crucial issue of power dimensions. Indeed, because of the way in which disability is regarded, it becomes an issue for women, who are largely undervalued. We are talking about the power relations that mean that it is largely the unpaid women. We construct disability as a cost but coming to the feminist argument, if I may, you may recall Waring’s New Zealand work If women counted, which looked at what would happen if you counted this in the gross national product. It added all of the unpaid work of women to the gross national product of New Zealand. If you counted how much people with disabilities can and could contribute, I would suggest to you that there is a really good economic argument for people with disabilities not being needlessly handicapped but being enabled. I say that as someone who obviously was not regarded as actually being worth while in terms of any form of meaningful work. I say that as someone who was actually rejected by the University of Tasmania, the university where I now teach, as not being capable of education. I say that as someone who was assessed by the Commonwealth rehab service many years ago as not being worthy of rehabilitation. I say that as someone who constantly is still experiencing what it is to be devalued as a person because of the metanarrative ‘disability’.
I would suggest to you that those relationships are crucial. We have already heard from Alderman Guy about the importance of getting people with disabilities as valued experts in terms of looking at what the arguments are in respect of the CSTDA. I would suggest that you need to have the people who are in receipt of services and you also need people who imagine what it is like and have an aim about where we are going and who are perhaps thinking about what quality actually is in terms of disability services. Quality, I would suggest, is not actually just surviving. Quality is about thriving.
One of the appointments I have is with the Australian Commission on Safety and Quality in Health Care. In my conversations with my fellow commissioners we have ended up in our work talking about a consumer pathway because we saw that too often it is what providers speak about that is counted as quality and safety. I would suggest to you that that is a really important lesson for the area of disability.
We need to construct people with disability as being inherently valuable. For example, I say I would love to have a person with intellectual disability as an associate professor teaching medical students with me. Why? Because they know intimately a variety of forms of experience of what it is like to be in receipt of that particular form of care such that those direct relationships have an integral, important part in helping to shape attitudes about people with disabilities and injecting messages of what quality really is. The best contribution that I have to make to teaching medical students is, frankly, talking about the realities of my life and bringing a critical reflection based upon relationships.
Relationships are absolutely crucial to how we do business. They are crucial to why it is we have unmet need. We do not, for example, think about the office of Prime Minister as being an onerous burden. We do not think that it is too expensive; we think, ‘We need to actually fund that.’ We need to think the same way about people such as me. I have been assessed as not being able to do anything. It is possible, I hope, that one of those days someone will recognise that I have something to contribute to Australian society. I might say that it has required a lot of support by unpaid women to get me there. In terms of quality of life, imagining people with disabilities to be all that they can be based upon their inherent dignity—that is, their inherent worth—is a radical change but it is a wonderful way in which we can move people with disabilities away from being other to being part of us, part of the moral community.
Looking, for example, at group houses—I heard some excellent questions that you provided—I would suggest to you that, because of the narration of people with disabilities as other, we have now moved out of large institutions but we are bringing the same values and the same attitudes into smaller group home situations. In the book I published, Disability in Australia, we refer to that as reinstitutionalising disability. It is the institution you have when you are not actually having an institution, because of the attitudes and the values.
May I suggest that it is really important in enabling citizenship to think in terms of purposefully creating relationships where we put people with disabilities in as a core part of how we work out what quality is and how we value the efficacy of these sorts of arrangements and in terms of resourcing people to think outside of the square that we live in. So many of us so ardently focus on our everyday need that it is very difficult to think about all that we can be.
I was deeply privileged in my life to have unpaid women who have fundamentally believed in me. I have a wife who supports me in wonderful ways to be all that I can be. Without those women I would not be able to make the contribution that I make. I desperately believe that there are so many people with disabilities in Australia that could be so much more, that based upon an account of dignity really could exercise their full potential. I urge you to bring about an account of the CSTDA that will enhance the inherent dignity of people with disabilities.
CHAIR —Thank you all for giving some very eloquent testimony to the committee about these issues. We have a time constraint problem which is going to be difficult. We were due to finish the session three minutes ago. However, what you have said is too interesting and too relevant to what we have been doing to not ask some questions. I propose to work on the constraint of asking each senator to ask one question and I would suggest that only one of you attempt to answer that question. Senators might direct one question to one particular witness. Unfortunately we have no capacity to extend the day at the other end, so we are going to have to be fairly tight about this.
Senator McLUCAS —Professor, I wonder if we could ask you about this issue that we have talked about in every hearing—that is, shifting the way in which we have developed the agreement away from an inputs based agreement to something that will measure improved, we hope, outcomes for people with disability. I think the Tasmanian government this morning alluded to a concern that they have about it being a laudable objective but questionable in terms of whether we can do it in a real sense. Would you have any advice to the committee about how you would achieve an agreement that is meaningful without layering on heaps of accountability measures that are expensive and questionable in their usefulness?
Prof. Newell —I also can offer you the solution to world poverty as well!
Senator McLUCAS —Excellent; I can just go to lunch now!
Prof. Newell —It is interesting. We think these things are too hard. Firstly, if governments want to make these things happen then they will actually make them happen. That is the first thing. I find it extraordinary that any government could say it is all too difficult. I think that there is the capacity within the Tasmanian government and any state government to do this. Secondly, I would note that the Commonwealth—I am thinking of a certain High Court decision—probably has a lot more power than we once thought it did. I note that that may be a rather useful power that could be exercised in this particular area. It would of course change the way in which we understand this.
Thirdly, because of the construction of disability, because of the attitudes inherent within the bureaucracy and within governments and because they see disability as a burden and something that needs to be got off the front page as ardently as possible, of course people resist. I would suggest to you it is not just outcomes measures that are seen as onerous but also processes that will assist people to rediscover the joy of assisting people with disabilities to be all that they can be, to see that this is a positive contribution. I know, for example, my own work is seen as very threatening by a variety of governments. At least I know that when I die thousands will come to my funeral just to check that I am dead. But what we need to do is incorporate those difficult and awkward voices, those narratives. I might say that this is good feminist knowledge as well in that we need to incorporate those narratives into having an ongoing evaluation.
Already we have seen with regard to the submission from ACROD Tasmania that there are a variety of ways of getting those accountabilities built into agreements. I would suggest that it is really important to not just do a quantitative evaluation but do a qualitative evaluation. There is a need for an ongoing qualitative evaluation which incorporates the knowledge of all parties in doing that. That is a really important account of quality. It recognises that it is not just having ticked a box but whether people see that. As part of this I would suggest that it is important work with regard to consumer pathways—having some indicators that talk about what it is really like for consumers and recognise the particular challenges in small places like Tasmania, where if you complain about the service, because you are in a dependent relationship, you are in deep trouble.
Senator ADAMS —As you heard before, I am very interested in the rural and remote aspect and access for people with disabilities to medical services, rehabilitation and respite. Would someone be able to help me with the patient assisted travel scheme and how your people are able to access treatment?
Ms Wilkinson —I have not got an answer.
Ms Reynolds —I have not either.
Prof. Newell —I have done some research.
Alderman Guy —I have been working with the department here—DIER—which is responsible for a lot of transport issues in Tasmania and, surprisingly for such a small state, there are many. The lack of transport is one of the major concerns. Patient transfer and the medical side of that is a major issue. One of the biggest issues is that they do not really cater for anyone with a disability.
Surprisingly, under the new legislation and policies put out two years ago, under the new taxi system the taxis are only allowed to be licensed in Hobart, the southern region; in Launceston, the northern region, and Burnie. So in the rural areas and those areas which could be well catered for with a wheelchair accessible taxi—which would make it viable for the taxi to operate by working with the Department of Health—they are not allowed to assist.
CHAIR —That is amazing.
Alderman Guy —I am still trying to work it out and I am an eighth generation Tasmanian. That would have helped to alleviate some of the issues because they could have brought a vehicle that is accessible for people with disabilities. The usual transport issue for the average person in those areas is that they can use any form of vehicle that can be brought in—and those areas do have them—but for someone who needs a modified vehicle, you are not allowed to have an accessible taxi. There are very few of them. HACC have definite criteria in terms of public funding on where they put their vehicles and how they use them.
It is being looked at. There is a research paper being prepared by DIER, which is our transport area, along with a few others, but they are very—excuse the terminology—pig headed and they do not want to see an integrated service, which is what we need. On an island like this an integrated service would be fantastic because it would utilise all the areas that are disadvantaged by people’s decisions. Rather than people just being considered disadvantaged, they are being disadvantaged by society, which is every one of us.
There are services, but not mainly for people with disabilities. It is a major drama if someone with a disability has to come in. When they are brought in by vehicle from any distance to a main area they usually have to come in about at seven o’clock in the morning, do whatever has to be done and then hang around all day to go back at six or seven o’clock at night. So they have to fill in the day whether they have somewhere to fill it in or not. I know of people who just sit on a park bench all day in many areas.
Senator CAROL BROWN —In your submission you make a range of very sensible proposals to improve the agreement and you also talk about the need to achieve greater cooperation between sectors and organisations. Could you expand on how we could achieve that and whether you see some sort of incentives working to enable true cooperation?
Ms Reynolds —I will respond in relation to ACROD. ACROD is the organisation representing service providers, however we try to work across the disability sector, because you cannot talk about service provision if you do not work with people. We try, in Tasmania—and indeed nationally—to work across the disability sector. We are also working at the moment with the government to try to get greater cooperation and communication between government and the broad disability sector.
The four of us today would have learnt things by sitting here listening to the government’s presentation. We may not have agreed with it all, but it is communication. Knowledge is held. It is a bit like the budget. There is money in there but we do not know what is there. We are trying, through a joint working party, to open up the system so that we know what is available and what is not available and to try to build greater cooperation and linkage.
Historically, the Department of Health and Human Services has been overly large. Because it combines health and human services there is too much for the few at the top to deal with and so they go into crisis management mode and do not want to talk to too many people. This has been the situation historically; we are starting to break that down. That militates against cooperation.
Senator SIEWERT —I would like to go back to the issue of operating your own services. The Queensland disability advocacy group is advocating direct payments and quite a significant change in the agreement to do just what you are talking about so that people can manage their own services. Would you support that sort of quite radical change in the agreement?
Alderman Guy —Yes, totally. Mine has been successful. I have full control over decision making in my life within available resources. Isn’t that what everybody uses? I have a company name, which is incorporated. I have several people who oversee that just to make sure that I do not shoot through somewhere with the money.
Senator SIEWERT —Live it up in Rio or something?
Alderman Guy —Not a bad idea! I believe there have to be accountability processes in place. I also believe that there has to be a strong focus on the person’s safety in that it is a new experience. It is a control. You need something like that to control government funding—which is what it is—and you need to be able to explain what you have done with it and to be accountable. You have to do that if it is not your money. There is also the fear that some people could be exploited, particularly in the first two or three years when you are not sure.
If you live with a disability all your life, usually with a primary carer, and then you suddenly find yourself on your own, running a household and running all the other things that everybody else takes for granted, it is quite a daunting process. As long as those issues are well looked at, I am a full supporter of individualised funding, which can be done in many and varied ways. It can go through a service or it can be paid direct, but it can be put in a person’s name and the service cannot use that money without keeping the person with a disability—as is Robin’s favourite saying.
Senator PATTERSON —We have had people telling us that there are more and more restrictions because of the occupational health and safety of carers. Does that pose problems for you managing your own funds? How do you deal with the public risk aspect of people coming into your home and caring for you if they hurt their back, trip over a carpet or something like that? How does that get dealt with? Is your company insured against that?
Alderman Guy —Yes. We have the same type of insurance. All the liabilities that a non-government service has are covered within the funding that we allocate for that. Also, people with disabilities have to remember—and it is part of their responsibility—that everybody has responsibility to ensure people are safe if they enter their home. If they do not, they should. With us it is a little bit different in ensuring that a worker is safe.
I am not into making other people into ‘wheelchairs’. I believe that it is my responsibility to ensure that the workers who come into my house are treated with respect, are treated as workers have a right to be treated, and are protected. That is part of ongoing life now: we all know there are certain responsibilities that we have. One of ours is to ensure our workers are safe.
CHAIR —I have a number of questions and what I am going to do is ask all of you if you would not mind taking them on notice and providing the information to the committee in writing. If you do not want to do that, that is fine. Ms Reynolds, given your background in government, can you give me a view about what would be an appropriate funding formula to balance these questions: do we fund on the basis of disability population or do we fund to match in some ways the performance of state governments when they are increasing their state contribution?
To you, Mary, I wanted to ask you whether there would be agreement, in your opinion, among disability communities in Australia that the advisory councils you recommended to be consulted would be seen as being representative of the broader disability communities or whether there would be others that would say that they deserve that voice or that it should be them ahead of the advisory councils.
To you, Ms Wilkinson, I wanted to ask what you saw as the alternative to this model of having strangers come into your house and whether there are more empowering models around that might be better for people who have to have those sorts of services offered to them.
To you, Professor Newell, I was very struck by your comment that in many ways disabled people today are worse off than they were in the International Year of Disabilities. Would you be able to indicate to the committee in which particular respect you think that is true? I know you all have answers that you would love to work out right now, but we do not have the time for it and I do apologise for that. I would like to thank all of you for your submissions and the evidence that you have given to us today. It has been a very interesting session indeed.
Prof. Newell —Thank you for the opportunity.