AH TONG, Mr Brandon, Policy and Public Affairs Adviser, Vision Australia (on behalf of Vision 2020 Australia)

HURD, Mr Steve, Client Systems Business Manager, Guide Dogs Victoria

JACKSON, Associate Professor Jonathan, Chair, Low Vision and Rehabilitation Committee, Vision 2020 Australia

PASCUAL, Mrs Cheryl, President, Blind Citizens Australia

ZAMMIT, Ms Jessica, National Policy Officer, Blind Citizens Australia

Committee met at 09:06.

CHAIR ( Senator Moore ): The Senate Community Affairs Legislation Committee will now commence our hearing into the National Disability Insurance Scheme Bill 2012. This is, I think, our fifth or sixth hearing, so you are part of a long-term inquiry into this process. I have to tell you that committee proceedings are protected by parliamentary privilege in Australia. It is unlawful for anyone to threaten or disadvantage a witness on account of evidence given to our committee, and such action may be taken by the Senate as a contempt. It is also a contempt to give false or misleading evidence to a committee. We prefer as a committee to have our evidence heard in public, but under our Senate resolutions witnesses do have the right to ask for their hearing to be held in private—in camera—under the guidelines. If you want that, you just have to ask us and we will arrange it. It is a process that is available. In some hearings, people do prefer to have their evidence held privately, but I do not believe that we have had any requests today for that. An audio of this public hearing is being broadcast live via the web so that people will be able to hear exactly what is going on as we speak. We will have full Hansard records of the inquiry and that will be available to you in a very short time so that you will be able to review what is there on record from you.

I welcome representatives from Vision 2020 Australia, Guide Dogs Victoria and Blind Citizens Australia. I understand that information on parliamentary privilege and the protection of witnesses and evidence has been provided to you. Do you have anything to say about the capacity in which you appear today?

Prof. Jackson : I am the Head of Clinical Services at the Australian College of Optometry.

Mr Hurd : For matters of public propriety I have to say I am a councillor at the City of Boroondara, but I am here today as a co-delegate with Vision 2020 and as Client Systems Business Manager at Guide Dogs Victoria.

Mrs Pascual : I am National President of Blind Citizens Australia, the consumer voice for blind and vision-impaired people in Australia.

CHAIR: Thank you. I would expect that you do have opening statements for any or all of you to make. Professor Jackson, you are going to start and then other people have opening statements. We will then go into discussion with senators.

Prof. Jackson : Good morning and thank you very much for the opportunity to present. Today we have three voices: my colleague Councillor Steve Hurd, from Guide Dogs Victoria; Brandon Ah Tong from Vision Australia; and myself, Jonathan Jackson, chair of Vision 2020 Australia's Low Vision and Rehabilitation Committee. I have brought three mini bios just for your reference for the future. We are speaking as representatives of Vision 2020 Australia on behalf of the Low Vision and Rehabilitation Committee, which represents 18 eye health organisations, and low vision and rehabilitation service providers across Australia.

Established in October 2000, Vision 2020 Australia is part of Vision 2020: the Right to Sight. It is a global initiative of the World Health Organization and the International Agency for the Prevention of Blindness. The organisation's vision is the elimination of avoidable blindness and vision loss by the year 2020, and ensuring that blindness and vision impairment are no longer barriers to full participation in community. Vision 2020 Australia is the peak organisation for the eye health and vision care sector in Australia. It represents 50 member organisations involved in local and global eye care, health promotion, low vision support, vision rehabilitation, eye research, professional assistance and community support.

Vision 2020 Australia recognises the transformative opportunity arising out of the National Disability Insurance Scheme. Its member organisations have come together to provide a united voice to the Senate Standing Committee on Community Affairs, to ensure that the draft NDIS Bill 2012 maximises positive outcomes for people who are blind or have functional vision loss. We at Vision 2020 Australia are strong supporters of the principles inherent in the NDIS and recognise that it is an acknowledgement by government of the extent and breadth of problems faced by individuals with disability in an evolving highly technical society.

You will be aware that the Low Vision and Rehabilitation Committee has provided responses to: the proposed statement on eligibility and reasonable and necessary support, in September 2012; the draft NDIS Bill, in January 2013; and the regulation impact statement, in February 2013. We are currently in the process of developing a response to the discussion paper regarding the NDIS rules. We greatly appreciate the opportunity to provide feedback on the critical elements of the NDIS legislation and to address questions that may arise from the submission, which you will be familiar with.

In our submission, we make four recommendations and we seek reassurance from government that: firstly, people aged 65 and older should have access to equitable disability services; secondly, someone already getting services or who is diagnosed with blindness will be able to get support under the grandfathering process; and thirdly—we wish to expand on this a little—that a person's functional need will not be determined by a medical diagnosis of legal blindness or by clinical assessment alone. The assessment of disability differs fundamentally from that of other easily quantifiable measures of vision, including the assessment of either visual acuity, which is resolution, or visual field size, which is breadth of vision. It has, in addition, only tenuous links with medical diagnosis, although the latter can assist in the prediction of possible long-term prognosis. The determination of rehabilitative needs and, indeed, the impact of rehabilitative intervention can only be determined and, indeed, assessed through the assessment of actual daily living and activity. In effect, one cannot quantify disability by measuring impairment. Through the NDIS, I truly believe that Australia has an opportunity to lead the world through the national adoption of vision-specific disability measuring tools for legislative purposes. Functional vision loss affects a person's day-to-day living. It may result in a loss of a driving licence and employment and in increased problems securing access to written information, including medication instructions and financial statements, and it can impact one's ability to move safely around home and community and significantly limit ones social and economic participation.

Our fourth recommendation is that an independent middle path, such as a disability service commission, be put in place to review decisions and resolve complaints in a way that is truly independent and accessible. Vision loss can be very complex and differs from many other forms of disability, as it is often unrecognised by the population at large. Adjudication over its impact on functionality requires specialist assessment and any review process must ensure that appeals are dealt with in an informed manner. Having access to timely support, including early intervention, equips people to adjust emotionally, get the aids and equipment they need, learn new skills and maintain independence. We welcome the opportunity to offer our expertise wherever possible to achieve the best possible outcome to ensure that the NDIS is fair and equitable for all people who are blind or have functional vision loss. My colleagues and I will of course be happy to take any questions arising from either of the Vision 2020 submissions or indeed today's presentation.

CHAIR: Thank you, Professor Jackson. Mr Ah Tong and Mr Heard, do you have anything to add at this stage?

Mr Hurd : Yes. I would just like to illustrate the importance of having good, accessible legal processes around disability. I will give you a true case history of a case I was a lawyer on. A gentleman with an intellectual disability was before the guardianship board of Victoria and the State Trustees were proposing to make an administration order so they could administer his assets. I was arguing that this gentleman did not need that because his brother was fulfilling that role for him. The chairman of the board asked me when the deed was executed and I started explaining that. The client was nudging me: 'Steve! Steve!' I said, 'Hang on a minute.' He said, 'Steve!' He sounded really worried. I said, 'What's the matter?' He said, 'When are they going to execute me?' He seriously thought that the chairman of the guardianship board—who was a very nice guy and a very community-minded guy—had that power. That illustrates the need to have very disability-friendly legal processes and bureaucratic processes. I put on record that Centrelink does not have accessible proformas for people who are blind or vision impaired. They often lose allowances for a while because they have not been able to access the voluminous amount of computer-generated documents that Centrelink sends. To expand on Professor Jackson's point, it is really important that we have accessible legal proceedings.

CHAIR: Thank you, Mr Hurd. Mr Ah Tong?

Mr Ah Tong : I am happy to proceed to the questions.

CHAIR: Mrs Pascual, do you have anything to add at this stage from your organisation?

Mrs Pascual : I do have an opening statement, yes. Blind Citizens Australia is the peak national consumer body of and for people in Australia who are blind or vision-impaired. Under our constitution, our board of directors and our committee members also have to be blind or have a vision impairment. We currently have over 3,000 members in Australia who experience varying degrees of vision loss.

Blind Citizens Australia is funded by the federal government as the national secretariat to present the consumer viewpoint of people who are blind or vision-impaired. We are not a service provider. We do provide information, support and assistance to people who are blind or vision impaired and teach them to advocate successfully for their needs. Our position has been formed through extensive consultation with our membership—12 face-to-face forums and six teleconferences during the Productivity Commission process and feedback from members that we have received since. This is why we believe that we are the best placed people to comment on the necessary changes that are needed to improve access to services for people who are blind or vision-impaired to enable them to live their lives with dignity and independence.

Our members have four critical issues which we would like to touch on today. Firstly, how and where do blind and vision-impaired people fit into an NDIS, including the age cut-off; the development of plans; advocacy; and capacity building and representation.

Ms Zammit : My name is Jessica. I will be touching on the first two points that Cheryl raised, which are around where people who are blind and vision-impaired will fit in within the scheme and secondly looking at the development of plans.

Firstly, before I move into that, one of the things that does need to be noted is there are some really good elements of the legislation as a result of the consultation that has been provided by the blindness sector. That includes recognition around functional impairment and the fact that we are not looking at a medical model of disability; the fact that there is recognition of episodic needs as opposed to episodic disability. Our members' needs may only be fairly sporadic—it could be access to orientation and mobility once a year or several times a year rather than day-to-day support, whereas there was previously a recognition of episodic disability, which often relates to mental health issues which can be episodic in nature. That distinction is extremely important.

Those are some really good elements, as well as early intervention. We are really pleased to see early intervention referenced in the legislation or the draft bill, particularly in reference to people who lose their sight later in life.

Early intervention is often seen as something that is just for children who acquire a disability, but for our members it is extremely critical to be able to access supports very early on, and that can lead to cost savings later on as well, which I am sure the committee is well aware of.

In terms of where our members fit in, there is a concern amongst our membership about how neatly they will fit within an NDIS, and that concern exists for a couple of reasons. The first component is that many of the services that are currently provided to people who are blind or vision impaired are free, and that is irrespective of the severity of the vision impairment and irrespective of that person's age. For many of our members who are over 65, there is a critical concern: 'Where am I going to access services in the future once an NDIS comes in?' We are well aware that the Productivity Commission did a parallel inquiry into aged care, and we are well aware that there is some significant reform happening in that area, but what we would argue is that that reform is looking at frail aged, at ageing in place and at respite and other supports, but it is not looking at the specialist needs of people with disability. That is not just people who are blind; that is people with a whole host of disabilities.

I would like to quote something one of our members said to me in one of the consultations that I ran around Australia:

When the nursing homes for the blind closed down, it was said that all other nursing homes would cater for the blind and vision impaired people. We have come to realise that the promises made by these nursing homes in the end did not meet all the requirements of the blind and vision impaired

Likewise, our members are concerned that there is this coverall that the aged-care sector will just meet their needs, but often there is not that comprehensive understanding by aged-care providers of what it means to be blind, what the capacity of people who are blind is and the fact that people can be very independent with some aids, equipment, orientation and mobility. So what we want to see is a system that a person can access. Does that mean a person has to be within the NDIS? That is a decision for government. What we would argue for, and what we have argued for in all of our submissions from the very start of the process until now, is access to the comparative supports that a person needs. If a person under 65 can get access to aids, equipment, orientation and mobility, just being 66½ should not mean you do not have access to the same comparative supports. So that is a critical point for us.

In terms of where people fit in, permanency is another element. We completely recognise that there have to be some guidelines and parameters set within the legislation, but there are also going to be people with certain conditions like cataracts where there may be the option of surgery—there might not be—but in that time there are significant functional limitations. You may have a person who is almost totally blind or significantly vision impaired who is not able to perform daily living activities. So what we have recommended in our submission is discretionary power for the CEO to enable access for a person where there are significant functional limitations, even where the condition may not be deemed to be lifelong. So that is one of those areas.

In terms of the development of plans, one of the concerns that have come up from our membership is ensuring that there is not an increased level of red tape. At the moment, if a person needs to access orientation and mobility to enable them to navigate their community independently, they will approach a service provider and make a service request. Once they are in the system, they will often liaise directly with the professional to organise a time that suits them and to move on from there. With the system, one of the concerns that have emerged from the draft bill is about what is deemed to warrant a new plan: if your circumstances change, do you need to develop a new plan every time? That is not really clear in the draft legislation. It appears to indicate that that may be the case. That potentially can increase the red tape that we are worried about, but it also has a risk of a client having to disclose very private information about why they need to re-access a service and also, if their allocation has been exhausted—if they have used all of their orientation and mobility, for example—having to explain why they need a service again, which is not currently the case.

We had a member—I will not disclose in which state—who was in a situation of domestic violence where she had to move home four times, and each time she needed to be able to learn how to get around her community to avoid being housebound and socially isolated. In that instance and, as the model is currently proposed, she would need to go to the NDIA every time and outline why she would need service access. Essentially, in that time while a plan is being developed or assessed, she is potentially housebound. We are mindful that there should be flexibility within plans and giving ownership to individuals to negotiate their plan as they see fit, to allocate their support as they need.

The other element I would add regarding plans is ensuring that there is no perceived conflict of interest. One of things that were talked about was that a service provider potentially could also manage a person's plan. As the peak consumer body, and as we are not a service provider, we see that there could potentially be a conflict of interest where a service provider may—and there are many good service providers out there, so we are not casting any aspersions, but there is a risk in the disability services sector that a service provider may unduly influence or suggest services of their own in favour of any other services.

We want to ensure that our members have independent access to advice and information and that is where peer support comes and capacity building come in—and which Cheryl will touch on in a minute—but it is critical that a person can make an informed independent choice and that is where we see the role of potentially the DSOs that were mentioned in previous incarnations of this as a possible way forward. I will pass on to Cheryl for the remaining two points.

Mrs Pascual : Blind Citizens Australia believes that advocacy should be independent of service provision and an NDIA. In the current bill, there is no reference to advocacy, in particular self-advocacy, which is vital in building the capacity of people with disability to make their own decisions and to question decisions. We recommend the inclusion of a clause in the general principles to cover this.

NDIS will not address systemic barriers therefore there is a need for systemic advocacy led by people with a disability for people with a disability. Our members continue to report the barriers they are experiencing in access to employment, access to public transport and access to acquiring information in a format that matches their needs. Final legislation should stipulate that an assigned percentage of total NDIS funding should be allocated to independent advocacy support administered independently of the NDIA or funding allocations sourced elsewhere.

Capacity building and representation—I want to touch briefly on this. Capacity building has not been referenced in the bill at all. People need access to independent information and advice, particularly from others who are blind and vision impaired. I cannot stress to you how important that is to someone who is newly blinded or beginning that journey into blindness. I can give you an example from my own life. When I lost my vision, I had three young children. I had a husband who had a busy career, and the service provision in Queensland at that point was extremely poor. The internet was just appearing, and I did not have any way of finding out information. I was losing vision and I had three children to raise; I did not have a list of people in my life who happened to be blind with children that I could refer to so that I could find out tips and tricks. Anything I have ever learnt—any skills, any tips, any tricks, from any role models—that has made me the successful blind person that I am has come from other blind people. It is extremely important that peer support opportunities are referenced in an NDIS. The lived experience of disability is the best teacher of all for people who are blind or have a vision impairment.

As far as representation goes, at present the bill has no prescribed minimum requirements for representation of people with disability on the board. People with a disability should not have those positions simply because they have a disability but because they have developed the skills and knowledge as well as the first-hand experience necessary to comprehend the nature and consequences of decisions made for people who have disabilities, and the long-term sustainability of an NDIS. Blind Citizens Australia recommends that there be proportional representation of people with disability, including people who are blind or vision impaired, on both the board and the Independent Advisory Council. At a minimum, this should include two people with disability with developed skills, and a maximum number of people representing disability on the Independent Advisory Council.

CHAIR: Thank you very much. Many of the points you have raised in those presentations have been part of our hearings to date. I know the senators have questions, but you can be assured that the issues you have raised are on the agenda. Senator Siewert.

Senator SIEWERT: Ms Zammit, I wanted to go to your comments on service and plan management and those sorts of issues. An issue that has been raised in the past and a number of times in this inquiry—in fact, when the quality assurance guidelines for advocacy were dealt with as regulations through the Senate, this was a topic of discussion—is the separation of service provision from advocacy, and whether it should be a requirement that a service organisation not do advocacy. I will come back to direct advocacy. But plan management, I would suggest, falls into that. I forget the exact words, but it is not banned in the guidelines. One of the arguments the government put up for not requiring that was related to regional areas, where you may have only one organisation in a country town, for example, and therefore you are likely to have to use that organisation. That point has come up quite a bit, and I have a lot of sympathy for the argument because I think it builds in problems. How would you suggest that we deal with those issues in regional and remote area service delivery?

Ms Zammit : I think that is a completely valid point. One of the things that we would be arguing is that, ideally, we want an organisation that is independent of service delivery because you can then provide people with information on the choices that are available. We get lots of calls from people asking what services are available in their state. It does not necessarily have to be a mandatory requirement, although that is what we would like, ideally. In remote and regional areas, we would actually want to know that a plan management provider had people with disability as part of its leadership and as part of its executive. There are many good service providers out there who do have high representation of people with disability on their boards and their executive committees, as well as in recruitment and all that sort of stuff, and we want to see that independence maintained as a principle. But, where there is going to be an issue with provision, then we would want to see fairly high levels of representation of people with disability in the management ranks of that provider. And I do not think that that is an unreasonable thing to hope for. There are many skilled people with disability out there who are working professionally who have the skills and the aptitude to ensure that they are informing consumer choice and that people with disability are getting services that they actually want and need—identifying those gaps—as opposed to just what is offered or what can be best offered.

Mr Ah Tong : Can I make a comment there. As a service provider ourselves—Vision Australia is the largest provider of blindness and low vision services nationally across Australia—we think this is a very important point as well. We have made the point in previous submissions that there need to be adequate safeguards in place to ensure adequate governance and administration and that in the operation and processes of those types of service provision, such as plan management providers, there is that level of independence and that consumers of those services can be assured that they are getting advice not only from the organisation itself but also more generally.

I can say two things. The first is that, as a service provider, we have community aged-care packages—plan managers, if you like—which do this very thing that we are talking about here. This is particularly in the aged-care area and for people with multiple disability and who are frail aged. We have about 60 packages that we manage, and we do that quite successfully. Some of those services are provided through Vision Australia's suite of services, but predominantly those things are sourced outside, through the community and with other providers as well. The point there is that, as long as there are guidelines in place, we do have a history to point to, to say that that can occur. The factor that we have a long history of expertise is also something that should be taken into account. That history and that influential expertise is critical in having the knowledge to assist people to find out and get those supports.

The second thing which speaks to this point is that, around assessment, we also have disability employment services, and we have adaptive technology consultants who are on the national panel of assessors. This is in the employment area. The argument could be made that a service provider should not also be a panel assessor, but we do have those consultants in that area. The safeguards around the national panel of assessors are such that we have to prove (1) that we have people that have the expertise to do the job; and (2) that there are adequate safeguards in place to make sure that they are providing advice and options for the purchase and procurement of adaptive technology not only within Vision Australia but also elsewhere. Those are two examples of where it can actually work quite well, but we would be the first to say that, in the NDIS rules and any guidelines that might come out of this area, we would hope that there are adequate guidelines and safeguards in place. But, from a consumer perspective, it is probably a good thing that there is that expertise out there and that service providers are not discounted without making sure that we can look at it, which I think is where it has moved to from the original discussions around this.

Senator SIEWERT: I take your point about the expertise of service providers. However, we have heard of examples where there have been some negative outcomes from service providers also being managers.

Mr Hurd : Can I make a comment here, please.

Senator SIEWERT: Yes.

Mr Hurd : Thank you. I used to manage an advocacy service in a country area, and I totally understand the problems that can come into play. Can I suggest, though, that when a person applies for an NDIS plan there would obviously be some resourcing in that area for that person to be able to apply for that plan, and it may easily be able to be worked through in the local area for the person with their community planner or their local planner who can give them those options or give them access if they are able to get online and look at those different services. It might be a good idea that, when that person is signed up to the NDIS, some of those safeguards are built in so that the person has the choice and has interaction with the agency.

Senator SIEWERT: Thank you. Mrs Pascual, I wanted to ask you about your comments on advocacy and just to be clear on where the funding should come from for advocacy. You would probably be aware that we have had a lot of representation around advocacy. I have got the message about funding but, on where the funding comes from, are you suggesting that the NDIS should have a funding stream advocacy or that the funding should be totally separate from NDIS?

Ms Zammit : Our position on advocacy is that we want an independent advocacy system. If that is funded through an NDIS or externally, once again I think that comes to a decision of government. What we actually want is for people with disability to have access to advocacy. We want to ensure that it does not fall off the radar as something that is not within the proximity of the bill or the final legislation, but we also want to ensure that it continues to be provided for people externally to the NDIS. Lots of people will not be eligible for the NDIS. Once again, the over-65s will still need access to advocacy support even when negotiating aged-care packages and access to other services.

I guess we have put it both ways in our submission because we want to see it funded. For us it is not critical that it has to be funded by an NDIS. What we want to ensure is that people with disability full stop, irrespective of what services they access—and it could be health, education or public transport, which are completely outside of the parameters of the NDIS—can get access to that advocacy support. We leave to government the decision about where it will be best funded and where the funding will be available, but we want to ensure that there is that provision for the whole gamut of people, not just the 410,000 who will get access to the scheme.

Senator SIEWERT: Regarding Vision 2020's comments about grandfathering, obviously we have had lots and lots of representation around the cut-off age being 65. Issues about grandfathering have come up. In effect, some people have been suggesting that anyone who has a package should be grandfathered to counter that, so that no-one would be disadvantaged by going into the NDIS. But, if the age limit were taken away, you would not need to grandfather your clients, would you, other than to make sure they were not worse off overall with a package? I presume what you are saying is that, if you keep the 65-year grandfathering limit—

Prof. Jackson : Yes, it is the only reason you need it.

Senator SIEWERT: Your recommendation is to ensure that, but I presume your preferred approach would be to get rid of the 65 cut-off.

Mr Ah Tong : Our preferred position is that there should be no age barrier to accessing comparable disability supports—that is option 1—but we also have to deal with the reality that there is a grandfathering provision currently in the bill that makes some provision to enable people to have continued access to service. The bill currently provides that, should you fall out of the eligibility criteria, specifically around age, if you were accessing a prescribed service within a prescribed time frame, you potentially would be also accepted. That grandfathering provision recognises already that it is unfair and not reasonable to leave people out if they have been accessing the service. What we are suggesting here is that, given the limitations and limited scope of that grandfathering provision, it is also reasonable to extend that to people with a diagnosis.

That means that, whatever those guidelines will be in the NDIS rules, if someone was diagnosed but has not yet accessed a service—they have been diagnosed and can provide that evidence—and they wish to access the NDIS, they should also be included within that provision. That fits with the fairness test and it fits with the reasonableness test, which we understand this grandfathering provision is trying to do. We do not think it is an unreasonable request to include diagnosis in that provision.

Senator FIFIELD: Also on the subject of the grandfathering issue, I invite you to jump in and respond at any time. I would appreciate an example of where this grandfathering provision may apply—a particular scenario would be helpful.

Mr Ah Tong : In our submission that we have provided two case studies. I can give you those in a nutshell. Under the grandfathering provisions, for someone who is aged 66 with a history of accessing a service and meets the eligibility criteria otherwise but is excluded on the basis of age, that service access history enables them to access the NDIS. That is our understanding and that has been confirmed by the grandfathering provision of 21.2(b). The extension of diagnosis would mean that someone who is also 66 years old who has not yet accessed a service but was diagnosed within the prescribed time frame may knock on the door and say, 'Look, I'm really having trouble being able to operate. I do not know what is available to me, but I do know I am having a bit of trouble and I need support for these types of things.' Does that answer your question?

Senator FIFIELD: It does.

Ms Zammit : I would like to extend on that. Many of our members acquire their sight loss later in life. There are a number of degenerative visual conditions which may not manifest until the late sixties. A person may be diagnosed with, for example, retinitis pigmentosa, which is has depth perception issues and peripheral issues. A person may be diagnosed in their teens or twenties but it may not manifest to a significant point of difficulty until, perhaps, their late fifties or possibly their sixties. There is also the issue—we have raised this as well in our discussions with FaHCSIA—of coming to terms with losing your sight and identifying that that is a disability. A lot of our members will not use the term 'disability'. A lot of our members will not actually acknowledge that they are losing their sight. They will resist getting access to support until they absolutely and fundamentally have to. We have had instances of people who have had near misses with cars or fairly serious falls, and that has prompted service access.

Extending on what Brandon was saying, and I completely agree with his points, there are going to be people who will not even remotely think of accessing a service even though they have a diagnosis. By the time they do access a service it is potentially too late because of the cut-off.

Senator FIFIELD: For the sake of argument, let's assume that there is no change to the legislation in relation to the age of 65 restriction. If the services which are currently available for people with vision impairment over the age of 65 were still in place and were no worse than they currently are under an NDIS, would that be an equivalent level of support for people with vision impairment over the age of 65 compared to those who would be under the NDIS? Do you know?

Mr Ah Tong : We understand the ideology of the NDIS. The Productivity Commission said that the system is unfair, fragmented and basically broken.

CHAIR: I think that was the opening sentence.

Mr Ah Tong : Exactly—that was the opening sentence. As a service provider, we do the best we can. We provide services to about 33,000 people a year and we think we do a pretty good job, but we also understand that we operate with limited capacity. The NDIS is here because people with a disability have said, 'We want a better deal and we want to be able to control the things that we know we need to access and live full lives, and we want to be able to participate in the social and economic life of our community.' That is what the NDIS is there for. What we are saying is: 'Let's take that at face value. If that were to occur, people from the age of zero to 64 should be getting a better deal.' If that were the case, there would automatically be a shift between what would be available for those under the age of 65 and those over the age of 65. As a service provider we know that 65 to 75 per cent of our clients are aged 65 and over, but we also know that only five per cent of our funding to operate our services is made available for people over the age of 65. So 65 per cent of our clients are over 65 and we only get five per cent of funding for those folks. So the system does not currently work. Also, looking at the aged-care reforms, they do not adequately cater for the needs of people with disability within the aged-care model. So what we are looking for is something that gives disability support for Australian seniors. There is no provision currently and we do not see any on the horizon.

Ms Zammit : Extending the point that Brandon made, I mentioned earlier that the aged-care reforms are looking at making a significant improvement, but the specialist supports are not there and there is no funding for that. That is where our critical concern rests.

Service providers in the blindness sector do a very good job but there are still gaps, and there are gaps when we are talking about regional areas and rural and remote areas. We are also talking about flexibility, choice and control, which is what the NDIS is designed around. We see this as an opportunity to address some of the gaps that our members are currently experiencing—for example, around that flexibility to get training at a time that is most appropriate to a visual condition. It is also about taking into account that people have other commitments in their lives that need to be worked around too.

It is also about recognising that, as Brandon has put to you, the level of funding that is currently provided by government for the blindness service sector is somewhere between seven per cent and 30 per cent. So about 70 per cent or more is actually funded by the public through donations. There has to be a recognition that the service providers can only do what they can do; they cannot do everything. Our members have learnt to essentially take what can be offered to them and be happy with that, because it is tailored, it is specialist and it is cognisant of the specific needs of people who are blind. So our members are happy with some of the services that they are getting, but it really depends on where they live. We have people who are waiting for eight weeks to access mobility training in some areas. We have people who have fly-in fly-out services, depending on where they live.

On another point: yesterday I was speaking to the Australian DeafBlind Council. For someone who is deaf-blind, it is even more problematic. Once again, service providers are not providing for some of those needs. There is not necessarily that dedicated level of resourcing to ensure communication or access to equipment. Our members purchase their own equipment. For instance, there is no scheme available for our members to purchase a braille note-taking device, which can cost a fair bit of money.

So I think that, looking at the current system, an argument might be made—and we have heard talk already in some of the NDIS forums with David Bowen—that, potentially, vision impairment and blindness could just continue to be block-funded because this is a niche area. Our members should have control and choice in deciding what services they need—as much as the next person with disability. Just because we are a low-incidence disability does not mean that we should have less choice. It is a bit too simplistic an argument, particularly for people who are aged, to say: 'If you are under 65 you can choose, but if you are over 65 you cannot.' That is where our concern would rest with that proposal.

CHAIR: Mr Hurd, did you want to add something?

Mr Hurd : Yes, just briefly, to back up what Jessica just said. At Guide Dogs Victoria we currently get about seven per cent of our funding from government, and most of our clients are over 65.

Senator FIFIELD: Mr Ah Tong, we were in Geelong yesterday, given that it is the site of a launch. What contact has Vision Australia, as a major service provider, had from the NDIS Launch Transition Agency?

Mr Ah Tong : My understanding is: our team manager out in Geelong, Anne Johnson, has had quite a bit of contact with Liz—her surname escapes me.

Mr Hurd : Liz Cairns?

Mr Ah Tong : Yes. I understand that we are also holding a sensory forum in early March. Everyone is working on what happens with this bill—the high-level policy and how the details will run out through the rules. So we have had contact. We are looking for further details.

Senator FIFIELD: So, at this stage, Vision Australia's operations in the Barwon region will be business as usual come 1 July?

Mr Ah Tong : The answer is business as usual. Sorry?

CHAIR: We did not check with the calendar, and we have been under the view that 1 July was a Sunday. Senator Fifield has now checked—

Senator FIFIELD: On the advice of the secretary of FaHCSIA—

CHAIR: Senator Fifield has now checked the calendar and it will actually be 1 July.

Senator FIFIELD: That is right. The secretary of FaHCSIA was wrong on the starting date of the scheme.

CHAIR: So on 1 July.

Mr Ah Tong : On 1 July business it will be business as usual. We are trying to work with the NDIS task force and the transition agency to figure out how this is going to roll out. What we would like to have is business as usual in the main, but there are some clients—current clients and future clients—who may knock on the door of the transition agency and make an application to get their services packaged. We will be working very hard to try and work the system through our organisation to cater for someone who comes through and wants a better deal and in the way that they want it. That is what we are planning to do with the launch sites in Barwon and in Newcastle in New South Wales, and we will be working towards that to deliver on 1 July 2014 in ACT.

Senator FIFIELD: It will be baby steps on 1 July this year, though.

Mr Ah Tong : It will be baby steps. It is going to be baby steps for everybody. We are very engaged with this and we understand that it will be business as usual, but we are looking to work out the opportunities that are there for our clients and the potential funding that will come through the NDIS in order to offer those services in a different way.

CHAIR: Senator Brown.

Senator CAROL BROWN: Firstly, I would like to touch on one of the recommendations in your submission, recommendation 3, where you are seeking some more clarification on references around how the bill will adequately include the needs of people who are blind and people who have functional vision loss. What would satisfy you in terms of what you would like to see in the draft bill?

Prof. Jackson : It is probably easier to say what we do not want to see and to make ourselves available to talk to government about a good example of what could be used. Historically, virtually all the papers that were published on vision impairment talked about the easily quantifiable measures of impairment and did an automatic equation on how that equates to disability. Over 30 years it has become more and more apparent that you cannot quantify disability using an impermanent measure. It is apples and oranges; it is just not right. Over 15-20 years there have been a whole range of quality of life instruments developed.

There are different types of quality of life instruments ranging from generic to very, very condition specific. You have to be really careful about using generic instruments to measure the impact of vision impairment and disability. Things like the SF-36, for example, or the EQ-5D, are designed essentially to measure improved quality following surgical interventions. If you have osteoarthritis of the head of the femur and you go and have a hip replacement, in the run-up to the hip replacement you find that you are getting less and less mobile, more and more pain, moving from stick to Zimmer to chair. You have a hip replacement and three months of physiotherapy rehabilitation and you are mobile again. You are walking to the shop. They are fantastic instruments for measuring that sort of intervention change. If you have got a cataract or two cataracts and you have a cataract removed, which is correctable vision impairment, what happens is that you walk in and you measure letters on a chart or whatever or you are not able to do this or that because of glare. You have the cataract removed. The intraocular lens is put in, and your vision is 20-20 again. You can drive again. It makes a massive difference to quality of life. Those quality of life instruments are good for that sort of surgical intervention procedure.

When it comes to rehabilitation, it is completely different because you have still got the condition you started with. So, if you ask those interventionist type questions, you do not get much of an improvement. So whenever it comes to quantifying disability for either access to service or delivering the service, let us measure how much impact it has had. You need to work with some experts to make sure that it is a disability focused measurement quality of life type instrument. Australia has a number of experts in that area. I work with a number of UK experts. The instruments are there; they are validated tools. If they need to be shorter—a lot of these are 25-question instruments—they can be shortened down to six-question, five-question instruments. It just needs a bit of work and then a validation exercise. There is a lot of science around that now.

Mr Ah Tong : Could I add to that. In that recommendation, working with our colleagues through Vision 2020 Australia, this is about recognising that, should there be a cut-off at 6/60for legal blindness, that is make or break as whether we support the NDIS or not. We could not support the NDIS if we exclude those folks with low vision. Why we are making that point here is because we are urging the committee specifically to recognise that this is a make-or-break issue for us. We understand through other sites of public policy that the legal blindness cut-off is used; what we are trying to do is make sure that that does not occur here. We are urging the committee to recognise this point and to make note in its report that this is an issue and the government needs to make provision, through other subordinate legislation or through guidelines, to make sure this does not occur.

Senator CAROL BROWN: Through the rules that will be developed?

Prof. Jackson : Measured disability, not impairment; that is the difference.

Mr Hurd : People often ask me how much I can see. I tell them: 'I can see 93 million miles because I like to watch the sunset just to appreciate that I have got some sight; it is the bit two inches in front of me that I have the trouble with!' With all this discussion about aged services, it is clear that age reform is conceptually linked to the NDIS in some way, shape or form. I also know there has been a review recently of technical aids and equipment schemes across the country, of which there are many. Have senators given thought to where the health system might assist the disability system, where other systems might actually impact on the NDIS as far as the provision of funding for things such as mobility aids, low vision aids et cetera? As I have often said, the NDIS is an insurance scheme, not a welfare scheme, and we have to understand it in that context. Therefore, I think there is a bit of corporate negotiation that needs to go on as well at some stage. I was wondering whether senators have had those discussions or thought of those sorts of issues.

CHAIR: We have not had those discussions but it is certainly my understanding that that is part of the government discussion—that the NDIS is one part of the overall process and should be looked at in that way. My understanding—certainly a little bit came out in estimates but not much—is that the core departments of Health and FaHCSIA are working together in this area. It is health and ageing, so the ministers are Butler, Plibersek and Macklin. They are supposed to be doing a coordinated approach. Certainly we have not had in this process the opportunity to look at that in detail.

Mr Ah Tong : I am mindful that when we are talking about functional vision it is a little unclear. For the record, let me put it in simpler terms. Someone might be blind and use a seeing eye dog or a long cane and someone might have low vision of say 6/36 and use a cane when outdoors, when they are walking down steps and with kerbs and those sorts of things, so that they do not bump into obstacles along the way. If you remove the dog and the cane for both of those people, both of those people will not have independent mobility around the streets. Someone might be blind and use a device like I am using here, a BrailleNote, which has a braille display and voice output, and someone who has 6/36 or 6/18 vision is only able to read using an electronic magnifier on their computer or a handheld magnifier. If you remove those two devices, the magnifier and this fancy thing I have got in front of me, both of those people are not reading independently in writing. So that is the crux of what we are talking about when we are talking about functional measurements.

Senator SMITH: At the end of your submission you talk about the lack of parity in regard to means testing and co-payments. Could you expand on that particular point?

CHAIR: That is a question for Blind Citizens Australia.

Ms Zammit : When the Productivity Commission initially looked at the scheme, it did talk about potentially having it as a means-tested scheme. In the development of the NDIS it has appeared that that has been removed, which is good. We want to ensure that that remains the way it should be. That was actually a point that was raised by DANA—the Disability Advocacy Network Australia—as a consideration of where the scheme initially started in its thinking, and now looking at the draft legislation. Obviously, when you are talking about NDIS sustainability, this could potentially come up later on in the piece and if it is included in the legislation that it is not means tested, then it is not going to be a contestable issue later on.

CHAIR: We are drawing towards the end and I do apologise. There is probably so much more that we can ask you. In terms of the process, if there is anything that you would like to add, please contact us afterwards. Senator Smith, considering some of the issues the witnesses have raised, perhaps it might be useful to ask these two groups your question about philanthropy.

Senator SMITH: Yes. One of the questions that we have been pursuing with organisations is: what is the expected consequence for private giving to organisations like your own as a result of the NDIS? There has been a suggestion that, perhaps because of much of the publicity and the attention that has been given to an NDIS, some people in the community might think that all the needs of disability groups are now being met by the taxpayer, no questions asked, so therefore they might focus their private giving on some other particular worthy charity in the community. Do you have a comment in regard to that? Or are you seeing anything from your members or from other groups?

Mr Hurd : Yes, we are. Guide Dogs Victoria are very thankful for the generosity we get from many donors, and I am glad you have brought this point up, Senator Smith, because I was hoping to get an opportunity to bring it up as well.

Senator SMITH: Great minds think alike.

Mr Hurd : That is right. It really is important that our donors know that the NDIS, and the publicity it is getting—and rightly so, because it is a great reform—is not a panacea. It is not going to fund everybody. We as an organisation are wondering, what do we do? We do not want to slam the NDIS and say: 'The NDIS isn't that good. It's not going to fund us,' because we think it is a good reform. On the other hand, we have to convey a message to our very generous donors that we still need donations. Historically, in Guide Dogs, the problem has been that people always leave money to train the dogs but not to train the people that work with the dogs, because they love the cute puppies. We do have very generous donors, but there really is an issue around that. We are working through that at the moment, about how we can convey that to our donors, but any suggestions would be most appreciated.

Mr Ah Tong : This is a very important issue for us as well. Vision Australia has a $90 million operating budget every year and 60 per cent of that comes through our fundraising, philanthropic giving, bequests, donations and other means. This is an issue, but when this issue comes up it comes up as an either/or type of discussion. What I mean by that is that people are suggesting that we would be better off to just not have this NDIS. That is not what we think should occur. It is an issue that we need to deal with, but we think it is an issue that we need to deal with in collaboration with the reforms as they roll out.

Mr Hurd : I think you might see a few more targeted campaigns, for example, raising money for kennels or for training services; a lot of the money does cover clients, but if we charge $30,000 or $40,000 for each guide dog that does not cover their training. Our guide dog operations manager says it is really getting much closer to $100,000 to train one guide dog.

CHAIR: Thank you very much. I know that you will continue working in the system, because both organisations do so much in that area, so thank you for that.