Day 1 Digital Dreams ndis
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PETER FORD: Exactly. So, I think the technology is already there. As a mathematician, you will already know how to do this. BERYL DYER: (Inaudible). PETER FORD: You can see how the architecture works. It would work off any touch platform you would use, and you could set up before you go to the restaurant. ALAN NOBLE: I agree with Peter. It may not be quite as aesthetically beautiful, I think you could use a shared spreadsheet. As I listen to your talk, I got a bit angry at the system. The way I see it, something is broken here. What broken is that infrastructure not provide a fully customised bill for every customer, that is a problem. Before we had wheelchair access, many years ago, into our buildings and restaurants, we didn't expect people in wheelchairs to somehow navigate the stairs. No, we put in place legislation and we mandated wheelchair access to buildings. Let's go for the root cause here. What you have suggested is what we call a workaround. A quick workaround that Peter suggested is fine. But I think we should start a movement to bring restaurants and other hospitality providers into the 21st century. They absolutely have the technology to provide an itemised bill for every person at the table. (Applause) ALAN NOBLE: Let's solve the problem. Anyone from the media here today? I'm not talking about splitting, the five people at a table know exactly what they ordered. They all numbered. Every chair in the country is numbered, so they should be able to do this. If they have to upgrade their systems, then so be it. BERYL DYER: (Inaudible) getting restaurants in a separate field. (inaudible) one bill per table. I wouldn't argue about that for a moment. (Inaudible) HUY NGUYEN: Let's continue the conversation afterwards. I would now like to invite our next speaker, if that's alright. I would like to invite Alison Oakleigh and Susan Proctor to the stage. Susie and Alison are an extraordinary pair with a compelling a refreshing, honest, grounded and raw storytelling style. Sisters, born 18 months apart. Sue was born and lived with profound physical and intellectual disabilities. Despite the differences, this loving pair of sisters is a strong pair. Together, they move and motivate all those around them. Susan is profound disability renders her silence in the mainstream, but the empowering and strong connection between the two sisters, allows Susan to share her thoughts. ALISON OAKLEIGH: I have a sense that we could do with a wiggle. Would anyone like a wiggle? In that last presentation, which was compelling, I wrote a small song. Maybe you would like to stand and wiggle, you could sit and wiggle. The song goes like this: # It's fun to play with the NDIS # It's fun to play with the NDIS # You can go anywhere, you can do anything # You can choose and control your dreams. # Thank you. Sue, I did not see enough wiggling. We are sisters. This is my sister, Sue. We are 18 months apart. Allies could not be any more different. Sue, you have a profound and pervasive disability. It is about how our society and community response to you, Sue. We have no idea why you are born like this. It doesn't really matter, and by that, he never occurred to me that you might be anything different. I do not yearn for you to be anyone else. I always assumed that every family had a Sue, and the more I learnt, the more I realised that is true. We need to make sure will benefit from the contributions you have to make and the connections you have two offer. I really want to say that again. What I mean is, what matters to me about medication, technology and all the geeky, or some things we do, we as a society and a community, we have an opportunity to gain from the diversity you have to offer. I think it is important for all of us. Courtney, who is a friend and supporter over there, we were talking about how awesome it is to be part of a community of people here. It is such a broad, diverse range of people. I read all of your IP documents, I am at all your meetings, look through your weekly schedule. We are pretty close, we had a sleepover last night, we see more of each other than our brother, because he is even worse than you at returning phone calls than you. What have you been up to lately, I have no idea? I can ask you but words are not your thing. Do we have any speech pathologist in the room? The speech pathologists describe your communication as pre-symbolic, which means that while you express yourself loud and clear, I often don't know what it means. It's not based on words, or the symbols that would grow from. In my experience, if I ask you if you want a drink of water, I don't know if you have understood, or paid attention, or care. If I offer you a photo of a drink of water, I don't know if you connect, but if I hold a drink of water in front of you, you make it clear if you want it or not. Many people would use the term non-verbal to describe you, but let's not describe ourselves as something we are not. When we were kids, my big brother and I would have a competition to see who could interpret Sue's language the best. It would be along the lines of, "Sue said I can have all of her Easter eggs." You have your own system of bodily hieroglyphics, and if we could only crack your code, get Skype translator, it would make a difference. Our experience of technology, which has been transformative for Emma, and is a wonderful thing to pursue, how experience of it is that it is based on language, verbally-based communication. Sue, what would it look like for you if it is not based on words and sentences. I had a wacky idea called wheelchair cam - it would see the world from your perspective. It would upload a time lapse of your day into the Cloud, in a secure place. There may be a GoPro down here looking at your face, who knows what we would find out. I did not know you like to eat using your own fork. I did not know that you pass my friend, Emma, every day, at the bus stop, walking her dog – let's have a coffee date. I never knew you spent some time in front of the TV, but have no interest in screens! Our question to the panel: how can technology help us connect with Sue, understand you, and your life, bring together pockets of your life, the pieces, the segments, you have so many people come in and out of your life – how can technology bring together the information they all hold? How can technology prod us with the questions we need, so we notice your subtlety, and we learn something every time we are with you. It is exciting that technology can allow us to connect without (inaudible) of symbols – over to you, panel, thank you. (Applause) HUY NGUYEN: Thank you so much, Alison and Sue. PETER FORD: That was very revealing and moving, and you are (inaudible) technology to tap into our human nature. There is a theme running through about a eCompanion, but what you are talking about in this area, and it is a pity we don't have speech pathologists here, there is an area of semiotics where we recognise patterns and behaviour. We talk about Big Data, and Google Full Scheme to this category, gathering data, what do you do with it? By reading biometrics, habits and movements, there is a thing called (unknown term) that will be featured by Microsoft, about gestures and patterns of movement. There are possibly things in here, if you are tracking with a wheelchair camera, over a period of time, you could gather a microcosm of Big Data on a person and start looking at patterns and the associated events and GPS or mood. And start breaking the code you talked about, understanding what Sue is thinking, or needs, based on that date. We are gathering the data, but we are not putting it together, a bit like the genome. That may be an opening to what you are looking for. ALAN NOBLE: I think the wheelchair cam idea is a brilliant idea, what we call a Big Data problem, we had to gather a lot of data before we can make sense of it. It is like what Peter said - cracking the code - we don't know what the code is that the starting point is acquiring enough information, another data, and hopefully identifying patterns in the data using analytic techniques. Until you can start measuring, you can start making sense of it, you have to correlate facial expressions, vision tracking factors, anything, what we don't know is... We have to measure everything until we notice patterns. With low-cost Web cams, it is possible to mount multiple cameras and have them streaming to the Cloud, where it is all secure. The challenge will be making sense of the data. We can collect the data but there are other big problems we have solved. We have started to crack the human genome and are making incredible progress – this is certainly in the realm of possibility. (Applause) HUY NGUYEN: I would like to invite Joseph Reynolds onto the stage. He is from Tasmania. He lives with his parents and younger siblings, Daniel and Anna. He has a cheeky sense of humour, he is inquisitive about the world and how the world works. Joseph drives himself everywhere in his powered wheelchair and wants more independence as he approaches his teenage years. He is at Newtown Public School and keeps up with his peers academically. He is well known around the school. Although non-verbal, Joseph uses an iPad and has a communication software called Predictable. He is proficient in using his iPad through direct touch and enjoys exploring new apps. He has low tech options such as (unknown term) and Vanguard, and enjoys the flexibility and social interaction that iPad allows. At this stage, his main interest is in making and editing short films, he has an interest in graphic design. He looks forward to accessing (inaudible). He loves watching movies, particularly comedies, animation and documentary. He enjoys ten pin bowling and occasional games of bocce. A round of applause for Joseph. (Applause) JOSEPH REYNOLDS: I am Joseph and I would like to share some of my digital dreams with you. As much as we would love it to be, the world is not always accessible, and I want my world only limited to places (inaudible). I live in a house with a younger brother and a sister. I attend a local mainstream school and I love to be in my community. All this means that I am dependent on others for assistance. Simple places like school, church and shops can be difficult to move around safely or to reach the things I would like. If you adjust things like moving chairs so I can get past, opening doors or picking up things others have left on the floor. I want technology to increase my freedom and my independence. I have cerebral palsy, which affects my ability to move, but not my ability to think. The technology of my power wheelchair gives me freedom, but it is limitations. I also get frustrated that I cannot use both hands and rely on help for lots of things. I have three particular ideas that I think could help me - a robotic arm, to effectively become a the functioning left arm for me. A Bluetooth padlock, so I can have security and privacy in my locker at school, even though I cannot do that with a normal padlock. A reversing camera, to stop me running into things and people when I move. My first idea is a robotic arm. I know robotic arms for wheelchairs do exist. I met someone couple of years ago with one on a chair, but it was very expensive and not entirely user-friendly. They can be slow and have limits on what they can pick up for those with limited and control, like me. A robotic arm could let me do a lot more for myself. Most people take for granted what the hands can do for them. Opening doors, moving obstacles - chairs left out from the table. Toys on the floor, reaching for things from a cupboard or from a bench onto my tray, picking up things that I have dropped. To be able to do these things, I would be more independent. Secondly, a Bluetooth padlock. I now know that Bluetooth padlocks exist, and I'm going to get one for high school. Finally, I would love a reversing camera on my chair. It's hard to see behind when you have limited movement. It's not just little things like my sister or brother and their toys. But big things too. When I am out in the community, other people don't understand the need to warn me of what is behind me. I get embarrassed when I bump into things behind me, just because I didn't see them. Or I accidentally hurt someone. I would like a camera that allows me to see around my wheelchair, that runs off the chair battery and has a wide view. It would be fantastic if the display could use wireless communication with a device like my iPad, so I don't have to have an extra screen. It would be useful to see how far behind me something is, or be able to see my brother sneaking up on me. Thank you for listening and goodbye. (Applause) HUY NGUYEN: Thank you so much, Joseph. PETER FORD: That was very cool. A young surfer called (inaudible) in Boston, we recently provided to (unknown term) to Massachusetts General Hospital. He is in the early stages of ALS. In the process, he is building, with a 3-D printer, a robotic arm to go on his wheelchair, so he can do all sorts of things - scratch his nose, pick up a drink, get food and move things around. The technology is around and has been specifically designed by someone who has the sense of how important it is. Bobby Forster is a guy we will tell you a little bit later on. I love the Bluetooth lock and the reversing camera will be an adaption of what we have on our cars. ALAN NOBLE: Thanks, Joseph, that was a wonderful presentation. The robotic arm, they are coming down in price. I would think that the NDIS scheme would be looking at ways to make that type of technology available. I can actually put in a good word to a Melbourne-based company called 2MAR Robotics. They make user-friendly, lightweight robotic arms. That could be something worth looking into. 2MAR Robotics. A smart wheelchair. Even if you have a reversing camera, unless you're looking at the image when you are reversing, you may be distracted, so the camera is good, but even better if the wheelchair were smart enough to say, "Hey, I'm not going to back up because I'm going to run into my mum or dad." So, let's put some cameras onto the wheelchair, but let's also put some smarts there. 3-D printing also has the opportunity to do all sorts of things. As cost comes down, we can do highly personalised my customised 3-D There are a couple of Australian companies making easy to use software. Pretty much anyone can design 3-D printable objects. It will take the technology a few years to get there. The only other comment I had, I have heard the expression 'non-verbal' a few times today – we need to rethink our use of language? If we think of non-verbal as gestures, but we are using non-verbal as a way to negatively stereotype communication mode, we need a new word, let's think about that. Definitely, let's try not to use language as a way to artificially define us to be things we are not, but to be things that we are. (Applause) HUY NGUYEN: That was a fantastic session. I would like to quickly wrap up. To summarise the key points which our presenters and our tech panel talked about is the ability to express ourselves and do daily activities and express who we are. Whether that is voice or not, that is one of the (inaudible) of technology. I know you have been generating ideas throughout that talk, I would invite you to have a discussion with our presenters and our tech panel. Please give a round of applause for our fantastic presenters. (Applause) And of course to the fantastic responses and ideas coming out from the chat panel, Allan and Peter. (Applause) That wraps up the session, thank you for attending, we would love to hear more from you guys – thanks. 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