Note: Where available, the PDF/Word icon below is provided to view the complete and fully formatted document
Community Affairs Legislation Committee

GALBALLY, Dr Rhonda, AO, Chair, National People With Disabilities and Carer Council

LAWDER, Ms Nicole, Chief Executive Officer, Homelessness Australia


CHAIR: Welcome. You are both extraordinarily experienced witnesses, so you know all about parliamentary privilege, the protection of witnesses and the system. Do you have anything to add on the capacity in which you appear?

Ms Lawder : I am also a member of the National People With Disabilities and Carer Council.

CHAIR: We have your very detailed submission; thank you very much. We also know the ongoing role which your council has in the process and we thank you for that as well. I am sure you have an opening statement. If you one or both of you would like to make that, we will go to questions afterwards.

Dr Galbally : Thank you very much. Just to clarify, the council includes people with disabilities, carers, the service sector, unions and business, so it is a very broad council of leadership. They have all put their efforts behind the submission that you have received, so it is a real consensus submission. I thought that was a good place to start.

My second comment is that the National Disability Insurance Scheme is a great reform. It is a point in history where people with disabilities and their families are potentially coming out of the wilderness—going from a miserable life into full participation in Australian society. It is tremendously pleasing that we are at the stage we are, where the scheme is in a bill being looked at by committee. It is a great reform not only because it enables people with disabilities to become true participants in every part of Australian society but also because it enables families to become families. That is very important. It also enables services to become innovative in developing new models so that people with disabilities will be able to live, work and take their recreation fully in the community.

Thirdly, the council wants to pay credit to the maturity of the Australian parliament and the state governments in that the implementation of the National Disability Insurance Scheme has moved along at such a steady pace. From the Productivity Commission report to the agreement to proceed, the imminence of the launch sites and the full sign-on of New South Wales, the pace has been good and steady for a major reform. I am old enough to have been around when Medicare was thought up and then implemented, and this matches that reform in moving along properly. We also want to pay credit to the transition agency and the task force at the Commonwealth and state levels for their incredible commitment to this rollout. That has been fantastic to see.

The bill is at the heart of the scheme, although in saying that the council wants to commend the action research model that is behind the whole rollout. By action research I mean continuous learning and continuous improvement so there is no closed door to things evolving, which I think is a really great way to proceed. The bill itself will be reviewed in two years, so in making the very best suggestions we all can for the bill to be as perfect as possible in this round, it is not the end of the matter because we are going to learn heaps as we proceed. The whole premise of this bill and of the operations is continuous learning and improvement and adjustment. That to me is the very best way to go. We have seen policies in Australia that have just come in, bang, and then the issue has been closed. I think this is a far more successful model to get going, proceed, learn and adjust. The mix of cohorts in the launch sites and the mix of geography also illustrate that point.

The first of the council's key themes in our submission is the emphasis we have tried to place on building capacity of people with disabilities and families and really supporting them to explore, envisage and choose in order to be able to take control over their lives, so the building of capacity is really a primacy. That we hope will imbue the bill. We have made minor suggestions, not major ones, because the bill really does pick that up wherever capacity can be built. It is also based on the comments that Senator Boyce made in relationship to the previous submission, with a view in the belief that capacity can be built. I think that premise, that capacity can be built for people with disabilities no matter what their disability is, is really important. That is very strong in the areas we have proposed.

The second really important part of our submission is in relation to building impetus for services to explore, envisage and enact new integrated models for supported accommodation, work and recreation. In the previous discussion about risk there is evidence from all around the world that the more open the service systems the lower the risk. We believe that is a very important part of the bill, to ensure that the service sector moves towards new, open, integrated service. So we wanted to raise that with you. This encompasses the council's recommendation for an approach to the bill that encompasses reasonable risk that non-disabled people might take. The example we use is the choice to take a risk in living arrangements, where there may be risk but that that risk be allowed and not be closed off, that having a risk averse bill would be a great pity. So we have made suggestions as to strengthening that area in minor ways.

The fourth theme I was asked to raise with you by council is that the council believes that the advice to the ongoing rollout of the bill and the rules and the whole operation should be provided by a majority of people with a lived experience. That does not mean to say that they could not also be carers, because there are a large number of people with disabilities who are carers, or that they might not be in the service sector. There are not enough people with disabilities in senior positions in the service sector. But that is the view of the council.

Those are my opening comments but I am very happy to go through the submission if you would like me to and match areas, because there are many other issues that are raised in our submission. I am in your hands.

CHAIR: I think we will go to questions and at the end if there is anything we have not picked up that you would like to put on record. We have your very detailed submission, which is great. Ms Lawder, is anything you want to add at this stage?

Ms Lawder : I am certainly supportive of Rhonda's comments so far. The NDIS bill has given enormous hope and optimism for cultural, systemic and structural change for people with disability and for their carers and their families.

Senator SIEWERT: When I was reading your submission, I wrote a comment to ask about the planning process. You talk about risk and a lot of other submissions have commented on the planning process. Could you take us through how you would see the planning process operate under your 'amendments'?

Dr Galbally : I think this speaks to the issue of capacity building really. Certainly the agency's role, as the council sees it, would be what we call 'high-level planning' that is essential and very important then in relationship to the assessment and the decisions. But the day-to-day planning coaching, I guess that is a way of putting it, is most important especially in the early days, but I would imagine it would remain important for quite a time. To suddenly have the chance to plan, to dream and to think what you might like to do with your life is going to be quite new for many people. We have therefore recommended that the role for the disability support organisations that was in the Productivity Commission's report be re-raised. This could be a great role for them and a very important role for the building of capacity of individuals but also of communities.

For example, take a community house that is used to running segregated programs to replace adult day programs in some states. They are used to not admitting people with certain disabilities into integrated programs, saying that it is all too hard and it will change the cohesiveness of the house. Someone could come in and really coach them, and say: 'These are the ways to do it. It's not so hard. You might want to ring the neighbourhood house around the corner to get advice from them.' It is coaching individuals in planning but coaching community in opening up and including. While the LAC role does encompass some of this, that will be a case load and it will be associated directly with the agency, whereas, a person with a disability could go to groups to learn how to plan. They could participate in planning training. I think that this capacity building is really important. We have tried to spell that out and we are hoping that this role for DSOs might go into the bill.

Senator SIEWERT: But you need a degree of flexibility in your planning but virtually every change you make in the plan at the moment looks like you have to take it back to the CEO to get permission to change the plan.

Dr Galbally : Yes. We have commented on that. It depends how that is administered. If it is automatic and you can at times do it online, and it does not have to be a big deal then that is one thing. If it is a formalised, permission seeking process that is going to be tedious then that is another thing. I am hoping that the intention is the first. We have made suggestions to make that as flexible and relaxed as possible. I am presuming that that is the intention. I cannot imagine that the agency would want to build a bureaucratic process. Also, I think that one wants to protect against that in the future. You can say that that is the intention now, although it is going to be reviewed in two years so that learning and improvement is continuous and that could be an area to really watch out for.

Senator SIEWERT: You have made some very detailed recommendations, so I will not go into all of those, because they speak for themselves, but I do want to go to the issue around the age limit. A lot of people say we should get rid of the 65 barrier, but are you saying we should come up with some sort of co-funding arrangement?

Dr Galbally : Yes, as happens when you have reform in one area compared with another, it highlights the gaps in the other, and until the NDIS appeared people thought the age care system was preferable because the disability system was so awful. Now with the NDIS on the horizon the real deficiencies in the age care provision have been highlighted. Our recommendation is that first there be an immediate working group—or whatever government considers appropriate—to look at disability and ageing, and particularly to look at areas like assisted technology and the lack of it being provided in the aged-care sector for place based ageing. You can get whatever you need in a nursing home, but for your own home the mobility supports that you might need are almost unavailable. That is crazy. There would be other areas where you are helped to stay in your own home to age in place, but in absolute isolation. The community focus of the NDIS, where the aim really is to participate in community, ought to be the same for ageing. Let ageing start that reform process. Indeed, the council will be recommending that as a separate issue—that the age care system sets up a review of its relationship to disability as a matter of urgency.

You are referring to what might happen, but we need to look at what the situation is now. We are proposing that the early intervention provisions be used as a way to look at particular deteriorative diagnostic conditions to consider including them. One perspective is that it is a continuum and the other is that there is a line in the sand and you are either in or out, and some members of council would have that as a personal view. The other end would be that it is open, which would be financially prohibitive. So we have tried to come up with a compromise position where there is some flexibility for conditions that might have been indicated before the 65 age cut-off that could be included. We are fully aware that that is tricky. For example, in determining which conditions are in and which are not. But we still think that might be somewhat of a solution to those concerns.

Senator SIEWERT: At the same time that this is going on there is the Living Longer Living Better campaign, which is an imminent reform process that was announced last year and which focuses more on community care. Do you think that reform process is going far enough?

Dr Galbally : No. I think it focuses on community care but not community participation. Being cared for in place can be a relatively miserable experience too. The aim is to have the ability to get out and about and participate—to be included, not to be shut out. That comes into the issue regarding community including older people with disabilities, but having the capacity to have equipment and support to get out and about. It is very much a model of personal support coming in—bathing, dressing and you stay home—although I am aware that many local governments provide support. Once again, it comes to the heart of the National Disability Insurance Scheme. I do not know that the assumption in the aged-care inquiry was that the vast majority—indeed, the overwhelming majority—of people would be disabled. Disability was not their topic, and it probably should have been, yet, because it is not the topic in general, it gets forgotten. Yet, disability is life's reality when you are old.

Senator FIFIELD: I just want to pick up where you were on the issue of people over the age of 65. In the submission you say:

The Council believes Section 22 should be revised to allow enough flexibility to enable the NDIS to support those people over 65 with severe and profound disability whose disability care and support needs cannot be met by the aged-care system and/or other community service systems.

I take it from that that your thinking is not that the NDIS should become responsible for supported accommodation for people in the aged-care system; that is only in cases where there are gaps between the existing aged-care service system and the provisions of the NDIS.

Dr Galbally : Yes, that is exactly it. And we would qualify that further down. In what we are trying to encompass, I think we hit a middle ground that everybody felt very satisfied with by qualifying that.

Senator FIFIELD: And I think the National Seniors submission reflects a similar sort of wording. I do not think it is anyone's intention that the revisions of the entire aged-care system become the responsibility of the NDIS.

Dr Galbally : No, we definitely do not recommend that. Indeed, I remember back to the very early days, when this scheme was in discussion with the alliance that was created, as you know. We debated this long and hard and decided that there definitely should be a cut-off—that the National Disability Insurance Scheme should not take responsibility for the aged-care system, that that would sink it.

Senator FIFIELD: In the submission the council also talks about DSOs, which, it would be fair to say, are not particularly highlighted or focused on in the legislation; they seem to have drifted off the radar a bit from the Productivity Commission report. You also touch on the role of local area coordinators. Perhaps you could just outline for us how you would see the respective roles of LACs and DSOs. I think the way things are heading at the moment, the LACs might almost be taking on some of the roles and responsibilities that the Productivity Commission intended for the DSOs.

Dr Galbally : I see the local area coordinators as really taking a case load of people who are within the scheme and assisting them in local areas to achieve what they have said they want to do. That will to some degree involve coaching, supporting and negotiating. But the whole systemic and structural reform of local communities with community awareness and with training and neighbourhood or community house meetings—or even meetings with local schools, where they all come together to discuss more inclusive education—would not be a role for a LAC. They might assist a participant in the scheme to go along to the school and to argue for entry, but they would not be responsible for the shifting of the community systems. Similarly, on the other side of planning and plan coaching, which is what we are suggesting for DSOs, the planning and the coaching on a day-to-day basis is a much more intensive piece of work than a LAC could accommodate, because it will have a case load. I can just imagine an individual and a family really wanting almost two or three times a week to discuss a different part of the plan and how they can up it, change it or expand their vision, get new options and get new information about what is available. So I think it is quite an important role. The delineation will come out in the launch sites. But in some ways it is going to be pushing things along towards inclusion. I think it is going to have the impetus to push towards inclusion, and push the community and the individual towards daring them to participate more inclusively. I can imagine that being very hard for people who have been used to being in retreat.

Ms Lawder : Yes, certainly that is the way I think we see it. The LACs are 'doing the doing' each day and the DSOs are helping with the higher-level thinking and possibilities.

Senator FIFIELD: In the draft legislation it reads very much as though for a lot of people money will be deposited into an account and people will pretty much have their hands on that cash, to direct as they wish. I think a number of people, before the legislation was tabled in the parliament, had in mind that the system might operate more as a voucher system, where you direct your entitlement to the provider of your choice but you do not actually have your hands on the cash. In your submission you seem to be suggesting that things should head more down that line, where the individual has the authority to authorise payments from the agency to a service provider. Is that correct?

Dr Galbally : I might have to take that one on notice. We are trying to suggest maximum flexibility, I guess—

Senator FIFIELD: Absolutely—

Dr Galbally : in that area. We particularly made reference to not using restriction as a mechanism to manage money. That is where we were suggesting you could use a swipe card model or whatever. So I think it might refer to that, too. I might come back to that if it is okay with you?

Senator FIFIELD: Sure. But do you envisage people having money deposited into an account or do you envisage more that the individuals have the right to debit against an amount that would not necessarily be in their account?

Dr Galbally : We wanted maximum flexibility for whatever suits the particular circumstances.

Ms Lawder : With the appropriate risk controls in place, what we want to do is provide the appropriate choice for people to do what they wish with that funding rather than what may appear to be a rationed kind of approach with a voucher.

Senator FIFIELD: A voucher can be an entitlement as opposed to a rationing device. It is simply the mechanism for conveying an entitlement. I know the 'v' word incites people, but it is merely a mechanism for a transaction.

Dr Galbally : I can go back and consult with a couple of the council members and send something around very quickly.

Senator FIFIELD: That would be helpful.

Senator BOYCE: I have one area to ask question about, Dr Galbally. There has been a lot of comment, and you broached this earlier yourself, on the tension between protecting vulnerable individuals and building capacity to take risk. The ACT Disability, Aged and Carer Advocacy Service earlier this morning commented that the language and processes of the act should more accurately reflect the objects and principles and not structure a relationship in which people with disability are required to be submissive. Their contention was that the way the bill was currently worded was that people were continuing to have it done 'to them' and not 'with them'. Can you comment on that?

Dr Galbally : I think that in general terms the council would agree with that. We have suggested that under the objects and principles there would be ways of strengthening that view by adding comment on reasonable risk especially. The second thing that we have suggested adding is that really genuine and full community participation as an attempt to consider that position.

Senator BOYCE: Would you see independent advocacy as something that should be mentioned?

Dr Galbally : Independent advocacy is vital in the area of disability. We would not be where we are without it. Whether or not it needs to be in the bill or whether or not it needs to be paid by the NDIS or by other sources is, I guess, the question still for discussion. But, definitely, right throughout the process advocacy needs to be there to work on all the systems surrounding the bill that are not going to change overnight. The act will have an impact, hopefully, on forcing other systems to change, but systemic advocacy is going to be necessary. There is also a need for advocacy at the planning meeting potentially—where an advocate could come—and at the meeting with LACs potentially. At appeal you would certainly want one-to-one advocacy. Whether or not that needs to be spelled out I am not sure. At the end of our submission we have said that advocacy is very important.

Senator BOYCE: So you have mentioned it.

Dr Galbally : Yes.

Senator BOYCE: So the council itself does not have a position on whether or not it should be spelled out?

Dr Galbally : I guess it would be better if it were at least referred to. I am not sure whether the bill is the place or whether the rules will pick it up—that you would take lay advocates to appeals and to planning. I do not know that the systemic advocacy issues belong here, because this bill is more about individuals. That more belongs in the NDS.

CHAIR: Dr Galbally and Ms Lawder, I have two questions. One is following on from the advocacy question. Both of you are very experienced in legislation and have worked through many processes involving legislation. When you look at the legislation, the CEO has a lot of power—and that has been mentioned by many so witnesses in so many submissions. In term of having an accountable process within government, is there any option to having the final point in the bill saying that the CEO 'will' or 'may'?

I am talking about the whole issue of risk management and the areas we have come across with that delicate balance, as we have just talked about with all three senators, between giving people the ability to own their own lives and take risks that everybody else can and the view that some people are vulnerable and could then be harmed. The way the legislation is written is that the CEO tends to be the back point for all accountability. So, in effect, if anything goes wrong—and the process seems that you are managing for things that go wrong—the CEO is accountable. From your experience, can you think of any other way that the legislation could meet the requirements of the audit processes and the reasonable responsibility processes without having such language? It consistently comes up in evidence that people are concerned about the language. I know that is a big one, but it is one of those really troubling areas.

Ms Lawder : The council has certainly discussed that. It is an issue of concern.

CHAIR: I am sure you have.

Ms Lawder : Yes. It is one of the topics that were discussed at length. I think generally—Rhonda can correct me if I am wrong—we understand that it was necessary but we remained just a little uncomfortable about that language.

Dr Galbally : Yes. We have tried to suggest that, where the CEO steps in, the criteria are spelt out without setting that in concrete. Remembering that this is an action research model, so you do not want to tie it down, it is still very important, where the CEO steps in, to have transparent criteria and public reporting, without driving the agency into the ground. I cannot think, using my knowledge and experience of legislation, how you would do it in a different way. The 'mays' and the 'wills' still have to have rules underneath them spelling out what they mean.

CHAIR: Whilst not removing that sense that the focus is the individual. That is the big question. Under section 118, your submission states:

The Council recommends that the Agency be given robust powers to manage the interaction between the NDIS and mainstream services.

Many of the services that people need are not immediately part of the NDIS, but we need to have the ability to ensure that they are addressed. Can I get something on record about how you define 'robust' in that process and why it is important?

Dr Galbally : This is a really important area because the NDIS is the largest, most significant reform in disability that we have seen in Australia. However, it is around the area of personal, individual receipt of supports, so people are going to be planning and envisaging being part of mainstream society in Australia. We hope as a council that the NDIS will have a major impact on, for instance, transport systems. One model would be to make sure, as the transport system is inaccessible, to provide transport costs using taxis, for example, in the short run. While that may be necessary, in the long run this would not get people into the experience of public transport, which is part of Australian society. Therefore, the ability of the agency to collect the data and to have what we would call an advocacy role in the issues of transport, built environment, mainstream education and job discrimination, would be really important.

We have talked about it in terms of collecting data. It is such a complicated situation, where Commonwealth agencies are in general starting to look at what they can do as their part of the NDIS. You also have all the state systems, and we want the NDIS to impact on state systems too, in the end. If state systems are responsible for education, for example, it is incredibly important that those systems be improved to welcome children with disabilities into mainstream schools and to make sure they learn.

Senator SIEWERT: This is one of the issues that I think Graeme Innes was talking about through the debate on the NDIS. I do not want to verbal him but, if I understood correctly, he was suggesting that the agency could take on a form of responsibility for doing that, from the perspective that—just as you have said—if, instead of using taxis, you could use the transport system, you would actually save money for the scheme. Is that something that you would see the agency actively taking on: to pursue mainstream services to ensure that they are providing the services that they are supposed to?

Dr Galbally : The agency, at any individual level, will certainly be taking that on. But that will only go so far on the ground. The degree that they decide to do that on a national or a particular state level will depend on the data that they collect. They will be adding their voices to many others. On their own, as with anyone, they are not going to change the mainstream systems. But the agency having a voice in those systemic changes that are really necessary would be very valuable. My reading of the bill is that there is nothing stopping them.

Senator SIEWERT: It is whether they are actually going to be specifically enabled to do it.

Dr Galbally : I was imagining that they would do that because of fiduciary—

Senator SIEWERT: Exactly.

Dr Galbally : I guess in areas such as their interface with education in which qualitative decisions have to be made and where it is not necessarily about funding but about things like a better education for learning outcomes. The insurance model is about getting the very best outcomes that you can as quickly as you can and early on so that you can then lead a life and save on the fund in the longer run. Therefore, it would be in the agency's interests to look at where people learn best and how they learn best and how they get the best education to then get a job and pay tax. That would in the agency's interest. We have put the emphasis on at least opening the door for robust data collection, giving them a tool that they can use to really work on those areas. On the other hand, they have a big job. To think that they would be responsible for the whole rollout of the national disability strategy would be unrealistic. You do not want them to sink underneath the burden of their role. They are going to have to concentrate on the implementation of the scheme. But in the longer run, they definitely should be a major player.

CHAIR: Is there anything that we have not touched on in our questions that you really wanted to talk about?

Dr Galbally : You have our submission and all the issues that are covered in it. I guess that we would like to conclude where we started. We congratulate everyone involved—every part of the parliament and everyone else. This is a steady pace. It is a good pace. It is cracking along well. We are very pleased that it is a continuous learning and improvement model. Everyone in Australia wants to see this happen without any interruption. It is really fantastic to have got to where we have. These hearings are a great step.

CHAIR: Ms Lawder, is there anything that you want to add?

Ms Lawder : I have nothing further to add.

CHAIR: Thank you very much for your time and for your submission and for your ongoing role—and it will definitely be ongoing.