Family and Community Development Committee
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T R A N S C R I P T
FAMILY AND COMMUNITY DEVELOPMENT COMMITTEE
Inquiry into social inclusion and Victorians with a disability
Melbourne — 20 March 2014
Members
Mrs A. Coote Mr D. O’Brien Ms B. Halfpenny Ms D. Ryall Mr J. Madden
Chair: Ms D. Ryall Deputy Chair: Ms B. Halfpenny
Staff
Executive Officer: Dr J. Bush Research Officer: Ms V. Finn Administrative Officer: Ms N. Tyler
Witnesses
Ms N. Layton, chair, Mr P. Willcocks, deputy chair, and Mr C. Thompson, project worker, Aids and Equipment Action Alliance.
20 March 2014 Family and Community Development Committee 1 Mr THOMPSON — My name is Carl Thompson, and I am the project worker of the Aids and Equipment Action Alliance. If we refer to it as AEAA, you should hopefully know what we are talking about. There are too many acronyms. Natasha is the chair of AEAA and is also an occupational therapist and academic, and Peter Willcocks is the deputy chair of AEAA.
The DEPUTY CHAIR — Welcome, and thank you for coming today. I just have to go through a few formalities. As outlined in the guide provided to you by the secretariat, all evidence at this hearing of the committee is taken under the provisions of the Parliamentary Committees Act 2003 and other relevant legislation, and it attracts parliamentary privilege. However, outside the hearings there is no parliamentary privilege. We are recording the proceedings, and you will get a copy of the transcript as soon as it becomes available. The normal format is that you talk to us for 15 to 20 minutes, which will leave us enough time to ask any questions. Also, if there are things that we think of later and you do not mind, we will write to you and ask for a bit more information.
Ms LAYTON — I might kick off then. We understand that the committee is looking for positives and for solutions to tackle social inclusion in Victoria, which we really applaud. We are a group who came together in 2006 to talk, basically, and we are now an incorporated association. We are made up of people with a disability who identify with disability. The rest of us move in and out of interdependence; that is probably the best way to look at human variation. We are health professionals, we are consumers, we are often case managers or from specialist services. We have 55 members, and we came together because of the dearth of policybased support for this known facilitator of social inclusion — that is, assistive technology, or aids and equipment — which sits within environmental interventions as a suite of options or interventions that can make a difference in life with elements of personal care and support as well.
On the cover of The Equipping Inclusion Studies Report we have just put in front of you, you can see members of the Aids and Equipment Action Alliance standing outside Treasury in 2008 with half a wheelchair, half a wheelie walker and half a screenreader and a message that says, ‘Thank you, Treasurer, but funding half of our devices is 0 per cent useful’. We are still in a situation in 2014 where state government funding, the SWEP — that is, the statewide equipment program, which funds aids, equipment and some home modifications for people with a permanent disability — funds less than 13 per cent of the devices actually available on the market. Its average subsidy rate is about 60 per cent. Given the thinner margin of health and high costs of disability that people have already, this is an output; this is not an outcome. We have been arguing about that ever since then, really.
We were keen to work positively with government, put solutions forward and put some evidence behind our concerns. We surveyed 100 Victorians. People use on average 8 bits of equipment in the context of about 12 elements of environmental mods — so your ramps, rails and so on, and elements of personal care and support — but the way they are funded is pretty splintered across government. Carl would get his personal care from a very different source to the home mods and to the assistive technologies.
Mr THOMPSON — And that depends on whether or not I am working or at home.
Ms LAYTON — That is right. Also, things are generally funded one at a time. There are some policy options there to recognise the suite of things people use together. I might hand over to you, Carl, just to illustrate the difference this stuff makes when it works well.
Mr THOMPSON — We were talking about this at the coffee shop about an hour ago, and one of my favourite examples of assistive technology is an automatic door. You see them at cafes, and you think of an automatic door as something that helps people with disabilities to get in and out — because I cannot open doors myself; but an automatic door is also useful for mothers and fathers with prams, people holding too many coffees in their hands, people who are simply lazy, and it also increases the throughput of the cafe. Assistive technology is not just about people with disabilities. There are often farreaching and unidentified positive benefits of it that you do not see straightaway. But I will talk about myself.
Lots of my assistive technology has been funded in part by SWEP — the statewide equipment program. While Natasha was saying 60 per cent of it is the average, it funded about 40 per cent of my wheelchair. That is not really rare. That meant I had to scratch together a good $8000 myself, and although I did work, that is not very easy when you are a pensioner. The point is that you have to be resourceful. Some of my wheelchair is funded through my ISP, which is an individualised support package. If I am taking money out of that, then my ISP is
20 March 2014 Family and Community Development Committee 2 insufficient for what it was actually designed for — that is, for personal care. I have to toss up between whether I want a wheelchair that works or I have people to get me up in the morning. These are not really good questions that we should have to ask ourselves.
There is also a problem with waiting times. The longer you wait there are questions about whether what you initially ordered will be correct anymore or still suitable for you. Wait times are often 6 months, but there have been stories of wait times being 18 months or more.
Ms LAYTON — It is currently 10 months for nonurgent assistive technology, meaning you can get out of bed without it.
Mrs COOTE — How often do you have to change your wheelchair over?
Mr THOMPSON — With the wheelchair, I think SWEP releases funding every seven years for wheelchairs.
Mrs COOTE — I just wanted to get that on the record.
Mr THOMPSON — And that is assuming it lasts seven years, but that is sort of a separate question. I think the point is: you have to wait, say, 10 months to actually be eligible to order a wheelchair. You cannot order a wheelchair and then pay for it, get a personal loan and then be reimbursed by the government, and all those things.
Ms LAYTON — We will suggest how you can fix that in a minute.
Mr THOMPSON — Sorry, I am getting ahead of myself.
Ms LAYTON — How long did you wait for your wheelchair, Peter?
Mr WILLCOCKS — Two years.
Mr THOMPSON — Especially for the younger people — I am an adult now, but people grow and change and disability needs change — there is nothing worse than finally getting the piece of assistive technology and finding out that it does not meet your needs anymore, because you have wasted government money, you have wasted your time and you have to go through the whole process again. Talking about the automatic door example, I have got one in my room now and that was funded through my ISP as well, which meant that I have had to reduce my personal care hours, but looking forwards it has meant that I can now enter and exit my room independently. If there is a fire, I do not have to die.
Ms LAYTON — Sit and ring a bell.
Mr THOMPSON — I do not have to ring a bell.
Mrs COOTE — Waiting to open the door.
Mr THOMPSON — The cost of the door might be pretty big, and the cost of the equipment is another issue, but over time it still saves money, rather than getting a carer just to let me out and let me in. I love to see it as an investment, and that is one of my big philosophies behind it because I see it as an investment.
Ms LAYTON — And from an evidence point of view we have tried to really articulate that the saving is a cost offset, so you do not need the carer because the door works and it saves downstream costs, so it will pay for itself if you have a health sector perspective on costs and outcomes. There is some evidence of work around that.
Mr THOMPSON — I live at home with my family and they can support me to a certain extent, but they are getting older as well. Anything that I can do to reduce the strain on them makes me feel better about myself and makes them feel happier to keep me at home and not raise my rent too high! That is my personal perspective, and luckily I have got some academics to my left who have mountains and mountains of evidence to back me up. Thanks for your time.
Mr MADDEN — Thank you.
20 March 2014 Family and Community Development Committee 3 Mr WILCOCKS — One thing Carl did not say is he is an inspiration to all of us. I really am in awe of Carl.
Ms LAYTON — We are just impressed because he built us the YouTube site.
Mr WILLCOCKS — He did all of that.
Mrs COOTE — We are all impressed with Carl.
Mr WILLCOCKS — Carl got himself a degree in business studies. He has built our website. He does all of our relationships with other organisations. He presents incredibly well, and the thing that really impresses me is that Carl isn’t just someone with a disability. He is just someone who is part of the community. He is social inclusion in one.
Ms LAYTON — Should his assistive technologies and environments make it possible.
Mr WILLCOCKS — And that is something very special. It is a new generation, and it is the change. We are very honoured to be with and to work with Carl, but things should not be made hard for him. He should have had support to get here today, but he had to juggle his books to do it, and this is not the way it should be. You feel a bit embarrassed, to be quite honest, when you see people with different levels of need not get that support when it is offered to others in the community, whether they are AFL footballers who get picked up in limos, who get flown home or whatever. There is a lot of difference in the community.
Ms LAYTON — Can I interject at that point? One, I think it is very important, and there are many ways in which social inclusion can be achieved that are cost neutral to government: just doing things more cleverly and actually listening to the experts who live with this who often have the answers. We had a team of economists look at the data in The Equipping Inclusion Studies with these 100 Victorians, and we said, ‘What do you need to do the things you want to do in your life?’, and they are the things that we all wish to do as articulated by the World Health Organisation. The International Classification of Functioning, Disability and Health says we all have a right to a social, civic and community life, spiritual life, cultural life and so on. Then we said, ‘Costs aside, what would make a difference to get you there? What would get you over the line? What would get you doing all this stuff?’.
The economists then looked at the cost effectiveness of those solutions and what it would take to get people over the line, and they worked out that we were probably spending twothirds less than we should. There is a notion called an equity weighting. An example from Indigenous affairs is that to deliver a health intervention to an Indigenous person — to get a GP visit — is going to cost probably three times as much as it does for me to go to Elsternwick and see my GP because of the distances, because of the need for an Aboriginal health worker and because of those things. When you apply that to disability, probably we are funding about a third of what we should. I think that is really important to record. That does not mean that government is in a position necessarily to triple the SWEP budget. When you have a subsidy rate, for example, for home modifications in SWEP that is $4400 for a lifetime and it has not changed since the late 1970s — it is not indexed at all — you begin to realise that actually that is such a token you might as well not have it. People are not going on waiting lists because it is going to get you a third of your door.
Ms THOMPSON — And then you cannot move.
Ms LAYTON — You are waiting for 18 months and then blah, blah, blah to get it. We would like to put on record that probably the equity in weightings needs to be addressed. Having said that, there are other things that can be done that are less costly in the interim to make a difference. We might move on to some of those, if you like.
Mr MADDEN — Yes, go ahead.
Mr WILLCOCKS — As I said, returning to when we came in, the prank we played was quite deliberate because most people with a disability are invisible in the community. I was thinking about what would make life easier for most people, and I started to look a little bit at our history because that is my bag. I looked at the State Library and I thought, ‘When that was built it was an inclusive building. It was there for educational purposes and all these wonderful things’. As a kid when I used to go there I used to scramble in through the side door because that was the only way I could get in. The ramp was put in later on.
20 March 2014 Family and Community Development Committee 4 I then looked at the arts centre when that was built — the National Gallery of Victoria. I was very fortunate to be there at the opening. It is a beautiful building. You walk in with your mates and you are in there and you can have a great time. I recently spent some time at the National Library of Australia. What a building that is. It has beautiful steps going up, but I cannot get into it; I have to go in the side way, and I cannot do that with my friends. This is not the sort of way we should proceed.
I then started to look at other things that were happening in our buildings, and I thought, ‘My goodness, the banks’. We can roll into any bank. We could walk into any bank in our walkers. We do not have any problems getting there. They obviously want our business. Supermarkets are the same. Unfortunately many GPs do not want us, but that is okay. It is those sorts of guidelines that government can put in place to make big differences. It is all very well to say, ‘We’re doing it’, but we are not; we are still building structures which are not particularly friendly, and there are plenty I am sure you are aware of.
Mrs COOTE — Parliament House.
Mr WILLCOCKS — Yes, exactly. It is that separation. You really must understand how wonderful it is to be able to wheel Natasha in here and swap roles. That is what it is about. You are still the one group of people doing things together. But too often with a disability, whether it is just from age or wear and tear or whether it is from another thing that has happened in your life, it is very hard and you should not be excluded because of physical barriers.
My bag — I will get it out of the way because then I can sit back and relax — is that I am currently building a townhouse. We are selling our block and splitting it. We are going to sell one to pay for the other. That is now the dream. It is all easy.
Ms LAYTON — Peter’s current house is getting less and less easy to manage in, may I say, and $4400 is not going to cut it.
Mr WILLCOCKS — No, it was not going to work. During the last three years of that process — we still have not knocked the house down; we are still negotiating permits — we have been looking at many other places. We would rather just move around the corner because it would be a lot easier, but they are not there. We are not building adaptable housing, and that is inexcusable.
I have become reasonably familiar with building companies and what their strategies could be. At the medium to top end of the market generally most of them are accessible or adaptable. There are these big bathrooms with showers you can just roll into. There is no problem at all.
At the more affordable end of the market, the volume builders, Porter Davis I think did something like 17 000 homes last year, a massive number, and they are only one of the builders. I felt those companies could be encouraged, or the system could encourage them. We are not talking about an accessible house, just an adaptable one. A wider front door of 900 millimetres, which is not particularly special; it is probably the same size as or a bit smaller than that one. The hallways of 1100, which is not particularly wide. It is about that wide, but it is fine to manage with a disability. With the bathrooms in particular, the trick I have learnt is that you can buy an offtheplan house with a bath in it and just not get the bath, and you have got a fully accessible bathroom. If we have those sorts of conditions on a house — that they have wider front doors, a reasonable hallway and a separate shower in the bathroom — we have got a house that could be very easily adapted for people, whether they are just ageing or whether there is an onset of a disability.
I believe this could be done very easily by linking the encouragement via the home owners grant. That is going right down the cheaper end of the market. Very quickly we would have tens of thousands of houses that were easily able to be adapted, so that people were not having to move out of their community, out of their house and out of their surroundings when something happens to them. It will happen to all of us, as you know. I think there are, what, 2 million people currently in Australia managing some form of disability. We are not talking about a small group at all.
Mr MADDEN — You are right. Sometimes it is only temporary, too, so they have to stay in hospital. They cannot get out of hospital early because they have got nowhere to go, for that exact reason.
Mrs COOTE — This is totally jumping the queue here; we have got a system on this committee, but I am now completely excluding it. Carl made a comment about the doors opening, and you said it was for young
20 March 2014 Family and Community Development Committee 5 people, people with a pusher, and for older people on walking frames as well. You speak about modifying homes as well. In the disability sector, in terms of getting these types of changes that are needed in that type of builtup environment, certainly there has been legislation put through about public buildings, which is in line with the rest of the country. But in private enterprise, Justin talked about the master builders and how intractable they are. You, Peter, rightly say that aged care is coming to all of us, and people have got to start focusing on it as they are getting older themselves or dealing with their elderly parents, having to adjust their own bathrooms and modify their houses, downsize or whatever. Is there an argument in terms of accessibility — for young mothers with prams, for people with a disability, for people getting older — for amalgamating those organisations to have much greater clout? Because they are all operating, as I see it at the moment, in isolation. All of them have got a very good case, but I think there would be a lot more power if people were operating together. Do you think there is a case for that?
Ms LAYTON — I wonder if one of the issues is we have different groups advocating for different things. We are a group that advocates for one particular suite of facilitators, because we know they work and we are just so fed up with not being able to provide them. But probably the bigticket message for government policy is not to regard the world as a bell curve of the normal population with a problem with the outliers — the aged, people of short stature, people who are moving around in trolleys. Those sorts of people become the outliers. It is seen as very hard to design for them. It is much more contemporary, really, to think about the world as a circle of population, of everybody. Within that, inclusive design is the answer. There would be things that would work for Carl that would just completely not work for Peter, or for the deaf–blind people who we interviewed in our research. They might need a whole set of enablers that is different again. Of course many of these are the best kept secrets. Hotel chains have realised that oversized showers and rimless entry suit everyone. This is a very wellkept secret. I actually think it is kind of about an underpinning assumption about normal and disability, and a separation and an ‘othering’ that keeps us probably fragmented, giving you messages that you have got to keep juggling.
Mrs COOTE — Because in fact it is a normality — everyone is getting old, regardless of whether you have a disability or you have not — and the reality is therefore that it is a total integration of being a normal challenge for us as a community really.
Mr MADDEN — It also goes back to your housing, which is about broadening the market. If you are talking about market triggers, if you want to be able to sell something or have people access something to a greater number, whether it is housing or a hotel room or any other service, you have got to encourage — —
Ms LAYTON — It is puzzling that it has not worked, isn’t it?
Mrs COOTE — Yes.
Ms LAYTON — A colleague of mine has done a PhD thesis called Universal Design — Why Don’t We Have More of It? She looked at property developers and builders and why they are the only ones who are happy to look at this. You get into arguments like, ‘It’s $50 more to put in a wider lintel’, and in fact you are not paying for extra plasterboard on the side. VCOSS tried this in 2008, with their universal housing principles. Why are people fighting so hard? If they have had the lived experience of disability in their families, then it is like they have seen the light and they change their minds.
Mr THOMPSON — If the door is narrow, I am probably going to run into it.
Ms LAYTON — You will create your own.
Mr THOMPSON — And then I will have to repaint it, so the cost saving is not going to matter.
Mrs COOTE — But those same builders have got older parents — they have parents who are going to need to move out of their house because they cannot get in. That is the link. The link is that it is actually about all of us — better livability for the whole community.
Ms LAYTON — I wondered if regulation was the answer, but you see it in hotels where if it is left to regulation and you have to have a minimum of 10 per cent accessible rooms in your hotel chain, then legally what will happen is you will get the back 10 rooms made accessible, instead of it being a marketing idea — ‘How brilliant! You can have everyone, even your elderly relatives, come to this hotel’.
20 March 2014 Family and Community Development Committee 6 Mr THOMPSON — Peter was talking about how Coles is not going to have a step into their supermarket, because you have a trolley.
Mrs COOTE — Exactly.
Mr THOMPSON — It is about money. That is not a dirty word — money is not a dirty word.
Ms LAYTON — Is it about being a customer? You are a valuable customer, not a client.
Mr THOMPSON — That is right. They do not want to make it difficult for their consumers, and we are consumers so that is sort of common sense to me.
Ms LAYTON — The hippocket nerve, isn’t it? Have we answered that question?
The DEPUTY CHAIR — Originally there was a big alliance with the disability and social justice sector about universal housing regulations, and now — —
Ms LAYTON — No, I think we should use that word and we should pursue that, but in reality — theoretically — the universal idea still leaves your outliers. I sit on a standards committee, and the Australian standards talk about catering for 80 per cent of the wheelchairs on the market — that footprint — which leaves your outliers out. There are clever ways to reframe it and say that every citizen needs to be able to get around, and maybe there will be different elements. You see it in some places in Europe: ‘Here is your flight of stairs with a beautiful ramp weaving up within the stairwell with tactile indicators and with markers there’. That caters for everybody, as far as I am concerned as an OT, and it is a thing of beauty, so it can be done.
Mrs COOTE — Carl, you were talking about your ISP and using your ISP to make the modifications that you want: how do you think this is going to roll out with the NDIS?
Ms LAYTON — Would you like me to answer that?
Mr THOMPSON — You go first.
Ms LAYTON — Our evidence demonstrated that people with disabilities — and we have a wide variety of people in our cohort, everyone except children; people with intellectual disabilities, physical disabilities and sensory disabilities — generally speaking knew what would help, they just needed the resources with which to do it. We are feeling very positive about the NDIS because what that is looking at is a participant plan, and you can bring in specialist disability supports, as they are calling them, but really you can muster anything, particularly things that are mainstream. So Carl is using his — is it an iPhone?
Mr THOMPSON — Something similar.
Ms LAYTON — Which I cannot provide him under the state funding scheme because it is not a specialist disability device, so there we are othering people, separating people out again.
Mr THOMPSON — I use it to turn my lights on and off in my room.
Ms LAYTON — Once upon a time I would have got you a $3000 environmental control unit that was huge, and now it is just all beautifully happening. Really, Carl could be informing the research and development chain a lot more. There was an article in the Big Issue this week by Fran Vicary saying that — what is it called? — when you activate your iPhone there is now an electrical pulse, and she cannot do that with her mouth stick. She needs to inform the iPhone developers and the iPad developers about being inclusive. It has met the needs of stacks of people in a mainstream way, but we just need to include the outliers as well. Now I have forgotten what the question was. The NDIS, yes. Individualised supports are definitely the way to go.
Mrs COOTE — And to be able to have the flexibility within them to be able to make physical changes; do you think they are going to be so rigid with how they plan it? Do you think there will be enough flexibility in the way they are going to deliver the ISPs — the packages — to be able to adapt to this? How do you think it is going to work?
Ms LAYTON — My understanding is yes. There is an assistive technology sector reference group for the NDIS that I am part of, and yes — I would urge the state government to look at this as well — the rationale is
20 March 2014 Family and Community Development Committee 7 that you can make an argument for the right thing, for the optimal solution now, because it is going to save you down the track. That is wonderfully powerful to be able to make that economic argument.
So I would be able to say — if Carl were my person — ‘Carl hasn’t had a pressure ulcer, but I would actually like to prevent one’. So unlike the state fund, where to get the better cushion he needs to have already had an injury and spent some time in hospital at $300 a day for an acute bed — probably more at the moment — I can justify that $900 cushion. I cannot do that in the state system, and I will be able to do that under NDIS.
The concern with NDIS is that it has again carved out severe and profound disability, and there will be many Victorians who are not be dealt with by that system.
Mr WILLCOCKS — I do not feel that what is happening with the NDIS is addressing the big question here, which is social inclusion. It is certainly helping individuals and will certainly help individuals get to certain places, but much of what I see in the social exclusion is lack of access.
Ms LAYTON — Is that physical access?
Mr WILLCOCKS — Physical access. There are all sorts of smart technologies around this wheelchair as an example. The other day I caught the train out to Williamstown and went through all the bluestone down Nelson Place and then came back on the ferry to Melbourne. Not many wheelchairs will enable you to do that — that is smart technology — but I had to work within the constraints of what was there.
I am fortunate that I can walk. I can walk short distances, and I am fine. Carl cannot do that, and there is no reason why Carl should not be able to do that because he would enjoy that as much as anybody. It is lovely going across the bay. That particular boat that I was on was not a wheelchairfriendly boat; it was just the standard ferry. We are really selling it a bit short there because it also means that people on walking frames and mums with prams would not have been able to do what I did or as safely as I was able to do it.
It is these sorts of things — sharing your family, sharing your outings; all of these things — that we have changed so much by our architecture over time. If you go back a couple of thousand years, or a bit more than that, the world was pretty accessible. Your goat track was more accessible than what most of the streets that we build are. We really must look at our community again as being a whole and including people of all abilities within that.
The DEPUTY CHAIR — Just on that accessibility, the Australian Bureau of Statistics came in earlier — not today; at another hearing — and there has been quite a bit of money spent on public transport accessibility, yet the figures are that there has been no change in — —
Ms LAYTON — Uptake?
The DEPUTY CHAIR — No change in the number of people with a disability using public transport. Do you have any idea why that might be?
Ms LAYTON — Could you just comment, Peter, on when we both tried to go to the march for polio awareness? I said, ‘Peter, why on earth aren’t you coming?’, and what was your response?
Mr WILLCOCKS — Probably my trip in today would be a bit more representative. I am able to walk my wheelchair onto the carriage. Being smart I go out the front because I want the driver to know that at least I am on the train. He or she does not need to stop to put on a ramp for me. That saves them time and it makes it less embarrassing for me and everyone else. But there was a pushbike on the tram with just about everything else you could put on a pushbike. My wheelchair was the only chair that would have fitted up the front of the carriage. When there is a major event on for people with disabilities it is impossible to get in there.
In the average bus, you are really pushing it too much if you have got two wheelchairs on the bus at the same time. A wheelchair is one way of getting around if you have got limited mobility. I really do not mind putting my neck out there, I hate what has happened to St Kilda Road with those expensive tram stops. I just think it is a disaster, because it has not really helped if someone has a problem getting around. It has helped a few people in wheelchairs if they are brave enough to get onto a tram and hang on for grim death as it goes around a corner, but they are the only people getting any help — perhaps a few mums with prams.
20 March 2014 Family and Community Development Committee 8 For the majority of people who have a disability — they may be sight impaired, they may not be able to walk very far — wherever the tram goes is not necessarily going to get them to where they need to be. I am a regular visitor to the Alfred hospital. I am really pleased I have got this wheelchair now because before that it was a nightmare just getting from the street up to the front of the hospital, and then once you got in there, walking around, again, was a problem. That is for anybody going to any public place like that. Public transport does not help.
The DEPUTY CHAIR — Just on aids and technology and all that sort of stuff, we had someone come in to talk about employment, which is one of the aspects of social inclusion. They were saying that in terms of OECD countries Australia is about 21st out of 29 with poor employment for people with a disability. Apart from the attitudes, in terms of people with a disability being able to work in open employment do you think that not getting access to equipment or technology prohibits people from getting employment? Are there any cases of that?
Mr THOMPSON — I seem to always be talking about doors, which is a bit strange.
Ms LAYTON — Go for it, Carl!
Mr THOMPSON — I was working at a local council. I got a job there and I initially asked the local council if they would be happy to fund an automatic door so that I could get in to do my job. They were not very helpful with that. After having to work from home for a couple of months because I could not get into work independently, I eventually got it funded through, I think it was DEEWR — the employment people of the government. Because that door helped me get in and out there was a fixed structure. I am not working there anymore. I was there for 12 months, and now everyone loves the door. It is about educating businesses that if they do positive things like that — that could help me or help people with disabilities — it can help their organisation. Now someone else who happens to be in a wheelchair or does not have the strength to open a door, might now make a council an employer of choice for them.
Ms LAYTON — So what made the change there was Carl. I imagine, Carl, that you continually find yourself at this icebreaking, forefront of social change. People want Carl, he needs the door to get there, eventually it happens and you leave it for others.
There were 10 per cent of our cohort in this study, who were job seekers. As a job seeker you are not eligible for the workplace modification scheme. We have examples: I had a deafblind interviewee who needed a Nokia mobile phone and a $2500 refreshable braille device. She had studied at TAFE, she lived independently with her cat, and with this little set of devices she was able to get on the train by herself, read barcodes in shops, find out and meet her attendant carers at various places. These could not be funded under SWEP, and she could not get them as a job seeker because she was not yet in employment.
Someone else who had a chronic illness and lived in her bed with a large monitor above her bed on a stand that does not exist on the market — it was built for her by TADVIC or by Solve, who you are going to hear from later — and a split keyboard; so a variety of assistive technologies especially for disability mainstream devices that work. She is a blogger, she runs several websites and does web design parttime. Because she works from home she is now eligible for the government workplace assistance scheme. Someone else who worked in local government and got his hearing aids through the scheme — $6000 hearing aids, which are very costly — had to leave them in his drawer at work and not take them home because they were seen as belonging to the facility. He had not heard his newborn baby cry at home. He needed to fund his own — —
Mrs COOTE — For goodness sake! Are they to be passed onto someone else when he goes? How ridiculous!
Ms LAYTON — Again you have this fragmentation across life domains. If you want to talk productivity, this is one area where I look at international practice. In Sweden, there is a deafblind person who works as a highlevel manager because she has a legislated right to support in the workplace and to disability supports. She works fulltime and pays taxes. She has two attendant carers: one is a workbased attendant carer, and the other is her deafblind tactile communicator. She is creating work for two people, is employed herself and is not drawing a pension.
20 March 2014 Family and Community Development Committee 9 Can I just finish off on the public transport issue? I would disagree with Peter to some extent about the tram stops. Again it is this, ‘Who are we designing for?’ I know people who — and this has been critically important — will wait on a weekend and the tram that comes is not one that is accessible. If you have a token or a small amount of accommodations, the hurdles remain great. With 99 per cent of the trams that come along, you know you can get off, but it is a big problem getting on at Collins Street when you cannot get off at Latrobe.
Mrs COOTE — Burwood.
Ms LAYTON — You need to understand the uptake in terms of whether that is robust, because it is really scary to get stranded.
Mrs COOTE — All the new trams that are coming on in Australia are built to do this. We still have such an old stock that is hard to deal with. Can I ask you about information technology and the new devices, going further forward? How is that going to make a difference? For example, if you go back a few years, communication units were bulky and looked different. Now it is an iPad that everyone can use.
Ms LAYTON — Except noone will fund it.
Mrs COOTE — They are becoming cheaper and cheaper. The reality is: will modern IT being more accessible make a huge difference in the future? Will it make a difference to social inclusion for people with disability?
Ms LAYTON — If you look at where progress is happening, it is in the ICT domain: the information communication technologies domain. What we are getting now is the voices of people with a disability, such as Fran Vicary in the Big Issue saying, ‘You have enabled a large cohort of people, but you have disabled me, because I used to be to be able to use my head pointer and a click, and now I cannot use my iPhone and my iPad’. We have said this a number of times to government. This is a message from Standards Australia that has been coming to government nationally as well. We need some sort of feedback loop. People with disabilities know what is going to work for their particular and unique capacities, but that is not being heard. At the moment SWEP are going through a bulk procurement process, and that will even further split the feedback loop. Normally if you buy a good thing, more of them will be produced. We do not buy the rubbish thing. That way of improving design is not happening in disability. There is probably a role for intelligence in some of these designs. At the moment it is just happenstance.
Mrs COOTE — As Carl was saying before about being able to turn on the lights in a room in his house from the iPad or iPhone, presumably those sorts of apps will make life a lot easier and akin to more mainstream inclusion. Is that right?
Mr THOMPSON — We seem to be jumping all over the place. When you say technology is for disabled people, producers think they can charge more and consumers think it is special. When equipment is normalised and seen as something that is a convenience and makes a difference to traffic and the general public, then its cost overall is reduced because it sells more. That increases the innovation, because it is seen as a lucrative market and more competitors jump in, and it becomes better. I would much rather control my heating and cooling with the Fujitsu air conditioner app than have a $4000 device on my wall.
Mrs COOTE — Yes, sure. My question really is: is the capability of that technology and the technological change going to be able to help people with a disability be less excluded? Would that be right?
Ms LAYTON — It would if they could get access to it.
Mrs COOTE — What Carl said about the decrease in the cost, is it because it is widely available and can therefore be adapted to people with a disability? Is that the argument or do you think it is still going to more expensive?
Mr THOMPSON — Some things are not going to be suitable for everyone — like a wheelchair is not going to be suitable for the general public; you do not imagine them sitting around in that setting. But the things that are, like iPads, will make a difference. Again, as Natasha was saying — —
20 March 2014 Family and Community Development Committee 10 Ms LAYTON — I cannot provide Carl with an iPad on SWEP. I can apply for an environmental control unit. Perhaps this brings us to our messages around what could change for SWEP in the short term. Certainly we have had this conversation at the NDIS level, advising them, and the question was asked: should it be expected that people can just afford their iPhones and their iPads these days? Is it the job of society to selffund? And the message coming back clearly from the disability community is no, not on a disability support pension; you cannot be expected to afford these devices. SWEP has not changed its list for some decades, so it could be more affordable. I and one of the members of the Alliance presented at a conference: Our paper was entitled, ‘I want to save my funding scheme money and they won’t let me’, because they have a list and the item was not on the list and we could not use the cheaper, mainstream device. So that needs to be dealt with very swiftly.
If we are not able to increase the subsidy rate, it would be good to be in a situation where someone can purchase an item and be reimbursed. For two years Peter has not been able to get to his archives and write his book because he has been waiting for this wheelchair. Sorry I am speaking on your behalf, Peter. Had Peter been able to selffund that item — draw on super, borrow from the equipment funds — —
The DEPUTY CHAIR — You were saying that just before, yes.
Mr WILLCOCKS — I had to do that anyway.
Ms LAYTON — Our economic advice there is that would not cost the government; it would not close SWEP. It is written into the regulations and the policy that that will not occur. The other thing that would help with SWEP — and they are very happy for us to suggest this to you because we have dialogue with them — is at the indicative time of need people go on a wait list. If we have a 10month wait list or a twoyear wait list, if there is an OT, I can say, ‘Peter is going to need a power chair’. Yes, it is going to take three months to get the occupational therapist’s assessment because they are really short of time, then it is going to take a certain amount of time to do the trials. Let us run those processes concurrently, so that by the time our assessment is done and you have got the script, you only have two months to wait until that 10 months has ticked over on the wait list. Your size will not have changed, you needs will not have changed and your hand function will not have changed.
Mrs COOTE — It is not rocket science.
The DEPUTY CHAIR — It is common sense.
Ms LAYTON — That would be really swift, and it would make a huge difference to people’s lives.
Mrs COOTE — It sounds logical, does it not?!
Mr WILLCOCKS — Just to return to the technology: I am a bit slow on the uptake at times, but the big thing I have with technology is that I have indiscriminate hand control, and I find it hard. We were looking at stoves, and we are not getting one of those digital stoves, because we cannot see the knobs; we cannot reliably push them. I can go to some of the smart bathrooms where you have to wave your hand over a thing, and it does not seem to work, because I do not have sensation enough to be able to do that. So this is the hidden disability — many of the items around, like that iPhone, I have given up on. I do not use them, because trying to swipe the rotten thing to get it to open is just beyond me, it just will not do it. When you talk about technology, a lot of it is designed for the young, the active, the notsightimpaired and those who have excellent motor skills. For the rest of us, much of that technology is really a hindrance, and that can be things like using a myki card — it is as simple as something like that.
Ms LAYTON — The danger is following what the engineers are developing because they do not know and they love developing things, so I see a lot of elderly people now looking for simpler, large button phones. Why has someone not figured out that that would be a really good seller? There is your inclusive design again. This for Carl, that for the other.
Mrs COOTE — You go to Vision Australia and see all those fabulous things and you think, ‘Yes, I want one of those’.
Mr THOMPSON — I think it is just saying that what works for me — I might have a similar disability to someone else — does not necessarily mean the solution is the same solution for someone else. It just means we
20 March 2014 Family and Community Development Committee 11 both have strong ideas about what solution we need. That needs to be looked at, and it needs to be worked out whether it is something that should be funded.
The DEPUTY CHAIR — Thank you.
Ms LAYTON — Can I have 30 seconds?
The DEPUTY CHAIR — Yes. Then we have other people.
Ms LAYTON — I understand. I heard you talking about inclusion with the people making the submission before. Have people talked to you about reverse inclusion at all?
The DEPUTY CHAIR — As opposed to stopping exclusion?
Ms LAYTON — This is what happened when my threeyearold went to swimming sessions that were geared around children with disabilities. After two terms of learning to swim he said to me, ‘Where are Poppy’s arms’, because we were swimming with a little child who had no limbs, and I said, ‘She doesn’t have any, but she is enjoying swimming’. That reverse inclusion is a very powerful way to move forward with attitudes to change. They do it in Sydney by bringing children into a kindergarten that is designed for the hearing impaired child — mothers wish to get their kids in there because the ratio is one to two. It is a beautiful environment — and there you go; there are the birthday parties, and there are friendships.
Mrs COOTE — They do that in the United States too with autism and gifted children; they put them together.
The DEPUTY CHAIR — That is good, thank you. We have not heard the term. People have spoken about that a little bit but not using that term. Thank you.
Mr WILLCOCKS — Thank you very much.
Witnesses withdrew.
20 March 2014 Family and Community Development Committee 12