Accord 2016 spring by Spinal Cord Injuries Australia

Spring 2016

Promising research for Australia TAKING THE BULL BY THE HORNS CONTRACTURE PREVENTION TIPS

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Features

From the CEO From the President News Fundraising Daily living Policy and advocacy Regional round up

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Information and resources Technology

08 Making the impossible possible 12 Taking the bull by the horns

Review Legal rights Member profile Calendar Social media

Photo top centre: Photographer Carmen Lee, Encapture

Patron: His Excellency General the Honourable Sir Peter Cosgrove AK MC (Retd), Governor-General of the Commonwealth Of Australia accord is a publication of Spinal Cord Injuries Australia ACN 001 263 734 Incorporated in NSW Head office: 1 Jennifer Street, Little Bay NSW 2036 Phone: 1800 819 775 Fax: 02 9661 9598 Email: info@scia.org.au Website: www.scia.org.au

Editor Fiona Jackson

Designer Shauna Milani

Proofreader Glynis Skepper

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Printer: Blue Star Group; ISSN 1448-4145. The opinions expressed in accord are not necessarily those of Spinal Cord Injuries Australia (SCIA) or of the Editor. They are published to create a forum for debate on issues related to people with disabilities. Original material in accord can be reproduced only with permission from the Editor. Information in accord is furnished solely as a guide to the existence and availability of goods or services. accord has neither the staff nor the facilities for testing and evaluating any of the services or items and therefore can assume no responsibility for the effectiveness, safety or quality of any such items or service. accord is funded by the New South Wales Department of Family and Community Services, Ageing, Disability and Home Care.

FROM THE CEO PETER PERRY

We don’t CARE I used these words in one of my earlier contributions to this publication, a few years ago, and it caused quite a bit of debate. What I was trying to say, of course, was that our organisation prides itself on promoting independence and empowerment, rather than seeing our members as people who need to be “cared for”.

We need to work together to make sure that the oftquoted goal of “person-centred care” is actually made a reality.

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to those involved, including the SSCIS Director, James Middleton. We need to work together to make sure that the oft-quoted goal of “person-centred care” is actually made a reality, and the current review of the Model of Care is a perfect opportunity to do this.

Another aspect that our organisation has stressed for many years is the fact Over the last few months, I’ve been that, as a social enterprise, our primary involved in a review of the “Model of focus is not the growth and success of Care” for people living with a spinal cord our organisation, which sadly seems to be injury in New South Wales (NSW); this is the case for many charities. Some of my an initiative of the NSW State Spinal Cord colleagues in other organisations think Injury Service (SSCIS). Unfortunately, I’m a bit weird when I say things such this service is housed within the as this, but if you think about why we Department of Health, so the focus of exist, it is to solve the social issue that the the people involved has always been very organisation was established for. If our much on health issues: that’s what organisation grows to be very large, and they’re paid to do. survives for another 50 years (it’s our 50th birthday next year, more on that later), we Whenever we ask our members and will have failed. Only if we do ourselves clients about their goals and aspirations, out of a job will we have succeeded, as they say that even though health is that will mean that people with a spinal an important aspect of their lives, cord injury and similar disabilities are there are so many other things that living a life no different to the rest of are equally or more important, such the community. as employment, housing, transport, education, discrimination, accessibility, It is in this spirit that we are partnering relationships, financial security etc. With with SpinalCure Australia and The these things in mind, I’ve been talking to University of Technology Sydney (UTS), the SSCIS about how we can broaden the to build on the ground-breaking research focus of the Model of Care review beyond being conducted by Professor Reggie a focus on health issues. This is something Edgerton of University of California, Los Angeles (UCLA). This will be at a new they have struggled with in the past, as they recognise that whatever they do is Centre for Neuroscience & Regenerative impacted by other things that are beyond Medicine at UTS, headed by Professor their control, but which have a significant Bryce Vissel. Prof. Edgerton’s research impact on the outcomes they would uses currents of electricity to “re-ignite” injured spinal cords, giving volunteers the like to achieve. ability to move their own limbs, control I’m pleased to say that the key people their bladders and bowels, function involved in the review have acknowledged sexually, stand upright, as well as the need to look more broadly than returning hand function to patients with health, and have focused the review on quadriplegia—an incredible milestone the needs of people living with spinal and potentially a life-changing outcome. cord injury, rather than—as has been the case in the past with such This collaboration could be a major step reviews—limiting it to issues of forward in our quest to achieve our vision staffing, funding and budgets within of a society without barriers for people with spinal cord injury. ▪ the hospital system. This is a credit

JOAN HUME FROM THE PRESIDENT

Culture for CHANGE When the box office smash hit Me Before You screened earlier this year there were a number of protests held by disability activists outside cinemas in Australia and overseas. The film told the story of a young man with quadriplegia, who despite vast wealth and privilege, as well as the love of a beautiful young woman, still elected to die by euthanasia. Why? Because he didn’t think his life was worth living with a disability. The Australian protesters brandished a banner declaring: “Me Before You is not a romance. It’s a disability snuff movie giving audiences the message that if you’re a disabled person you’re better off dead.” Where have we heard this before? Me Before You is merely the latest in a conga line of films over the past forty years peddling this propaganda of despair (e.g. Whose Life Is it Anyway?, The Sea Inside, Million Dollar Baby). But what made this protest different from earlier ones was that the international response by the disability community was much better co-ordinated and more vocal, powered by the weapons of social media along with greater ease and rapidity of communication. And this time, especially following the flood of outraged disability blogs and YouTube clips, the mainstream media began to take notice. Articles and reviews that were thoughtful and even sympathetic to the disability perspective began to appear in respected publications such as The Age, The Sydney Morning Herald 15 June, “I’m not a thing to be pitied: the disability backlash against Me Before You”, The Guardian 3 June, The Hollywood Reporter 6 June. Such reportage has been unprecedented. However, on July 26 the whole world was shocked, if only briefly, to learn of an atrocity in Japan that specifically targeted people with disabilities. Nineteen severely disabled residents were massacred as they

slept in their beds at a residential care facility in Sagamihara. A further 26 were wounded. The self-confessed perpetrator, Satoshi Uematsu, a former employee previously sacked for his disturbing views about the residents, remained defiant and proud of his “achievements”. “I did it,” he is claimed to have boasted afterwards “It is better that disabled people disappear.” In a letter he wrote to a politician in February, a few months before the crime, Uematsu outlined in detail his plot to kill all 260 of the residents and his belief that he should be rewarded for his contribution to Japan and world peace. He described people with disabilities as only creating “misery” and that they should all be “euthanised”.

Me Before You is not a romance. It’s a disability snuff movie giving audiences the message that if you’re a disabled person you’re better off dead. Indeed, the Japan Times 27 July described the mass slaughter as a “mercy killing”. Frankly, I can’t see anything merciful about slitting the throats of 45 people. What also distresses me is that although the initial story was reported worldwide, unlike the Orlando atrocity or the terrorist attacks in France, there were no candlelit vigils, no fund raising concerts, and no photographic honour roll of the dead and wounded; no celebration of treasured lives lost. There is a connection between the two stories. While ever-popular culture continues to promote messages that our lives are lesser than that of others and therefore not worth living, butchers like Satoshi Uematsu become an increasingly menacing possibility elsewhere in the world. ▪

NEWS

Upgrades to access at the Sydney Opera House

NeuroMoves comes to Canberra As part of their election campaigns, the Labor and Liberal parties in Canberra both committed to a one-off $300,000 grant to Spinal Cord Injuries Australia to establish a NeuroMoves program in the ACT. Thanks to this commitment and a generous grant from the John James Foundation, a NeuroMoves gym in Canberra will finally be a reality.

With the assistance of NSW Government funding, the Sydney Opera House (SOH) has gradually implemented accessibility upgrades throughout. SCIA has continually advocated for improved SOH access to venues, services and facilities, and is regularly consulted by the SOH, to provide feedback and advice on the SOH Accessibility Masterplan, all of which is now influencing the SOH Renewal project. This includes improved access to the Studio, Playhouse and Drama Theatres, and the Bennelong lift, providing access to the three levels between the Forecourt and the box office. The plan also includes additional accessible toilets. In August this year SOH announced it secured $202 million funding from the NSW Government to start the SOH Renewal project to upgrade existing venues and facilities as well as creating new ones. Stage one of the project is due to be completed between 20172021 and includes improving access to the Concert Hall, the Dame Joan Sutherland Theatre, a new creative learning centre, a new function centre and the entry and foyer under the Monumental Steps. This World Heritage listed and internationally renowned building opened in 1973, at a time when there were no accessibility standards and no Disability Discrimination Act. A number of lifts that were initially included in the SOH plans (providing access within the venue) were not installed due to budgetary constraints. 4

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There are now plans to increase the number of wheelchair spaces and adjacent companion seats throughout the Concert Hall for up to 26 wheelchairaccessible positions. There will also be lift access between the box office and the theatres, including the Dame Joan Sutherland Theatre. A new passage will connect the Concert Hall Southern Foyer to areas currently not wheelchairaccessible or challenging for those with mobility restrictions, including the spectacular Northern Foyer. The Concert Hall upgrade also includes new wheelchair-accessible toilets and four back-of-house toilets for performers. The Dame Joan Sutherland Theatre renewal is costing $45 million and is self-funded by the SOH. The theatre will include up to 23 wheelchair-accessible positions in various locations and will be closed for about seven months during the project. The SOH is an affiliate of the NSW Companion Card that enables cardholders to purchase tickets for themselves and obtain a complimentary ticket for one companion. However, the SOH has gone one step further by setting the ticket pricing for people with disability at the lowest price category. This is of great benefit for many people with disability and increases their opportunity to attend the SOH. Information on the Companion Card is available at: www.nswcompanioncard.org.au/ A short video of the SOH Renewal project is available at: http://www. sydneyoperahouse.com/sohrenewal/ overview.aspx

Our ACT clients have fought long and hard for this. A huge thank you goes out to all those who helped lobby for NeuroMoves Canberra, in particular Peter and Loreign Randall, John Owen, Suzette Searle, Eugene and Helen Holzapfel, B Harris, Patricia Gray, Daniel Savage, Jordan Kramp and Cheryl Crilly. Register your interest for this new service in Canberra by contacting info@scia.org.au or 1800 819 775.

Replace and save In a bid for households to be more environmentally conscious and cut down on power bills, the NSW Government through the Home Energy Action Program are offering eligible Pensioner Concession, Health Care and Veterans Affairs card holders a 50 per cent discount on a television replacement and a 40 per cent discount on a fridge replacement if you have a plasma, or cathode ray tube television or a fridge that is more than six years old. Currently, the program permits the purchase of one fridge and one television per eligible household. Installation and removal is limited to those residing 50 kilometres from one of The Good Guys stores. For more information head to http://www.environment.nsw.gov.au/ households/appliance-replacement-offer.htm and apply online. This offer will be running until 30 June 2017.

NEWS

81 medals for Aussie paralympians The opening ceremony got off to a heart racing start when extreme wheelchair athlete, Aaron “Wheelz” Fotheringham, raced down a six storey ramp and somersaulted through the air as the fireworks exploded over Rio’s Maracana Stadium. From that moment on, we were in for an astounding display of sporting achievement at the 2016 Summer Paralympic Games.

Naz Erdim with his Wheelchair Rugby gold medal

The NRL’s Nathan Hindmarsh shows support for NeuroMoves We were delighted to have former National Rugby League player, Nathan Hindmarsh, visit our NeuroMoves site in Lidcombe, Sydney - he certainly caused a stir! SCIA is proud to be an official NRL partner and our clients were keen to share NeuroMoves first-hand with Nathan. The NRL supports NeuroMoves nationally. NeuroMoves staff members Terrey Sheumack and Alana Galpern, with NeuroMoves client Zoe Morphett and NRL player Nathan Hindmarsh.

The Paralympic Games have grown in status over the years and with more media focus than ever before, this was the second most-attended Paralympics in the games’ history. The Australian Paralympic team ended up bagging 81 medals, including 22 gold. Our very own accord contributor, Naz Erdim, won gold with The Steelers, who beat the US team in the Wheelchair Rugby final. “What a game - our final against the US could have gone either way. We played well to beat them in double overtime by only one try. We’re all over the moon,” said Naz. Five-time Paralympian, Kurt Fearnley, was also elected to the International Paralympic Committee Athletes Council at the closing ceremony, a great honour for one of Australia’s most loved Paralympians.

Stories from the smallest room Spinal Cord Injuries Australia (SCIA) has joined forces with Coloplast to provide a free, live and interactive webcast on 30 November for people with a spinal cord injury to learn all you need to know about continence. Experts in the sector, including a registered spinal nurse consultant, will talk about the latest products and methods, and the increased choice the National Disability Insurance Scheme offers when buying continence products.

Supporting those with physical disabilities Glenn Moore Units Tasmania 26-28 Tolosa St Glenorchy, Hobart

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SCIA’s Peer Support Team will also share their own personal experiences, including tips and tricks they have picked up along the way to make life easier. Learn how to overcome challenges you may often face to enable you to continue to do the activities you love to do, without having to worry about continence. If you have any questions that you would like answered this is the forum for you. See the events section on page 34 for details or register at www.webcasts.com.au/scia.

Phone: 03 6272 8816 paraquadtas.org.au

Email: info@paraquadtas.org.au glennmooreunits.com.au

www.scia.org.au 5

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FUNDRAISING

Spanner’s Motor Show

Meet our new corporate partners and see how they can benefit you

Having enjoyed the experience of his first major fundraising event—a fishing competition in 2015—Mark Tanner of Macksville, NSW decided to embark on another fundraising journey, again incorporating one of his many passions—cars, bikes and anything motor related. The Spanner’s Motor Show, held on Saturday 13 August at the Macksville Showground, brought together motoring enthusiasts from all over NSW to enjoy and/or compete in the Show and Shine competition. The competition included a range of different categories including, Best Vintage Car, Best Motorcycle, Best Audio and the Best Overall as voted by the public. Visitors enjoyed the music of the Big Block rock band, kids’ rides and delicious food. Mark raised $2,902 for Spinal Cord Injuries Australia (SCIA) by collecting Show and Shine entrant fees, selling raffle tickets with prizes donated by located businesses and collecting vendor fees. “I had such a great time organising this event and it was amazing to see it all come together,” said Mark. “We had such fantastic feedback from the event that we’re keen to do it all again in 2017.” If you’d like to combine your passion, no matter what it is, with fundraising for SCIA, why not contact SCIA to find out how we can help you achieve your goals on 1800 819 775. No idea is too big, or too small! We’d love to hear from you.

A vehicle conversion by Problem Management Engineering.

and reduce social isolation. Now is the time to explore the options open to you; you might be surprised what can be done. you will also receive your first three, sixmonthly services on car modifications organised through PME for free Coloplast is a leader in the field of bladder (labour only). and bowel care and will be supporting Blue Badge Insurance Australia (BBIA) SCIA’s ‘Stories from the smallest room’ is Australia’s first insurance specialist program. This program is designed to break down the barriers people currently focused exclusively on providing better face in accessing the right continence care. insurance solutions for people living Coloplast is also on hand to give free and with a disability or restricted mobility. They insure modified vehicles, electric confidential continence advice and help you prepare for the NDIS by ensuring you wheelchairs and home alterations. In include the right supports for your needs. many cases they can offer discounted premiums to disability parking permit Problem Management Engineering holders and cars that have been converted (PME) has more than 25 years’ experience for drivers or passengers with a disability. in modifying cars and, like SCIA, strives to bring greater independence to people If you would like to hear more about our with a physical disability. They love a corporate partners and how they can challenge and can convert all sorts of benefit you, call 1800 819 775 or email vehicles, helping to increase independence info@scia.org.au We are delighted to announce three new corporate partnerships for SCIA, bringing fantastic new benefits to our members, and we cannot thank them enough for their support.

Special thanks go to Newcastle Permanent Charitable Foundation for the generous grant of $88,000 towards establishing a NeuroMoves facility in Lismore, NSW. NeuroMoves is SCIA’s community based exercise and fitness service for people with a spinal cord injury, other neurological condition or physical disability.

The facility in Lismore will be the first NeuroMoves offered by SCIA in regional areas and will become our 11th centre. We are grateful for this support and excited to be able to offer this unique service to our members and clients currently residing in the Northern Rivers region in the near future.

www.scia.org.au 7

COVER

or the very first time, clinical trial evidence shows the spinal cord is more than just a mere messenger between the brain and limbs; it can re-learn and process information, even after injury. More than 30 paraplegic and quadriplegic participants have experienced the return of life-changing sensory and motor function through epidural electrical stimulation (EES). Improvements included better bladder and bowel control, a return of feeling and sexual function, return of hand function, and the ability to stand.

Fiona Jackson, Editor, accord

An irrevocably damaged spinal cord has always meant living with permanent paralysis; the body no longer working the way it used to. A cure has yet to be found and for people living with spinal cord injury (SCI), treatments to restore function have felt like the impossible dream. Until now. 8

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Initial trials of EES conducted by Prof. Reggie Edgerton at the University of California, Los Angeles (UCLA) involved stimulating an injured spinal cord by implanting a small electrode against the spinal nerve, just below the point of damage. Prof. Edgerton first published his results in 2011 in The Lancet, after trialling EES on young Rob Summers, who’d sustained an SCI some five years earlier. Summers was able to stand immediately after the implant was activated and, following exercise therapy and training, he soon learned to flex his limbs on command – something no-one expected would happen. “I’ve got a lot of function back,” Summers says. “I can move my toes, ankles, and hips – all on command. I now have very good sensation and feeling as well as bladder, bowel and sexual function, plus the ability to sweat. My experience has been simply life-changing.”

COVER CEO and Executive Director of SpinalCure Australia, Duncan Wallace, says he remembers the sense of immediate significance he felt after reading The Lancet article, despite widespread scepticism from the scientific community. “It was pretty seminal, to be honest. To publish a paper with just one subject in The Lancet was a very big deal.” Soon after, Wallace attended the wake of Spinal Cord Injuries Australia (SCIA) and SpinalCure board member, the late David Prast – a man passionate about improving outcomes for people with SCI. Serendipitously, neuroscientist Prof. Bryce Vissel was also in attendance and the two discussed their interest in the new findings. And so it was, at this unlikely venue, that the dream of helping those living with an SCI was born, with Prof. Vissel becoming instrumental in establishing a unique project to bring the research to Australia. As the driving force behind the original Walk On program (now NeuroMoves), Wallace is certain Prast would have been thrilled that such a sad occasion was the catalyst for truly beneficial collaboration. To further confirm his research, Prof. Edgerton repeated the treatment on Summers and three other young men with motor-complete injuries between C7 and T5, with initial results published in Brain in 2014. All four participants saw the same significant improvements in sensation and function as Summers had originally experienced. Excitingly, these physiological changes remained even after the electrical stimulation was turned off. One participant, Kent Stephenson, explains he was unable to move his legs prior to treatment. “The accident left me paralysed from the chest down when I was 21. It was a complete injury – with no hope for me to regain any mobility. The first time they turned the stimulator on I felt a charge in my back. I was told to pull my left leg back, something I had tried without success many times before. So I called out loud, ‘Left leg up!’ This time it worked! I was in shock; my Mum was in tears. Words can’t describe the feeling that overcame me– an instant, overwhelming happiness.” According to Wallace, previous spinal cord research is littered with unfulfilled expectations but a cure is now considered inevitable – and it’s EES treatment that holds the key. “This is the first time in decades we’ve seen a therapy result in actual, extensive functional return in chronic injuries. These changes have made an immense improvement to the quality of life for the young men participating in the clinical trials. We’re really excited to share with accord readers that the next stage of this research – a five year program to be established by Prof. Edgerton – will take place here in Australia,” he says.

Prof Reggie Edgerton, Prof. Bryce Vissel, Kerri-Anne Kennerley and SpinalCure’s Duncan Wallace at the launch of fundraising initiative Project Edge.

But none of this will come cheaply. SpinalCure has partnered with the University of Technology Sydney (UTS), recently launching their major fundraising initiative, the aptly named Project Edge, to attract backing from government, corporates, foundations and individuals. The aim is for studies to commence during the first half of 2017 at the UTS Centre for Neuroscience and Regenerative Medicine, where Prof. Vissel has been appointed as Centre Director. This initiative will build on US achievements, pushing Australia’s work to the forefront and eventually becoming one of several streams in a new SCI recovery program at UTS, including stem cells and exercise through SCIA’s NeuroMoves exercise programs. The team envisages that therapies combining two or more of these streams will vastly improve SCI outcomes in the short term and pave the way for a long term cure to be found. Work will focus on a new generation of transcutaneous electrical stimulators, which work through the skin. These can match the results of epidural stimulation, which works through the actual spinal cord, and thereby eliminate the dangers and cost of such invasive surgery. SCIA’s CEO, Peter Perry, says it’s a rare opportunity to combine the latest clinical techniques, knowledge, innovation and opportunity to really work together for people with SCI. “We’re really excited about the results of the research so far. Project Edge looks very promising and it’s an ideal way to honour the amazing work of David Prast.” SCIA is also co-funding two scholarships with SpinalCure, The David Prast Fellowships. The first of these will be the project lead on the neurostimulation research, with the second leading research into stem cells. SCIA will also assist with exercise physiology research through the NeuroMoves program. www.scia.org.au

COVER Prof. Edgerton used his Project Edge launch address, Spinal neuromodulation: Reviving Reasons to Hope, to explain, in simple terms, that neuromodulation is the ability to change the properties of spinal neural circuitry. “The easiest way to think about it is that we are changing the mood of the spinal cord. We think we can modulate the circuitry so we can make it want to walk, to stand and to do other motor tasks. We can do this through electrical stimulation via an implant, we can do this with transcutaneous stimulation – what we call painless cutaneous enabling – and we have sensory and pharmacological stimulation. We’re exploring all the different way to do these, and the basis for this has been defined to a large extent by what has already been done in laboratories.”

Neurorehabil Neural Repair in May, where participants now experience improved control and function post-EES implantation. And, just like the participants in Prof. Edgerton’s original research, those partaking in this study also experienced improved use of their hands after the stimulator was turned off. “Initially, participants were entirely dependent on their caregivers, but they made large gains in feeding, dressing, bathing and grooming, as well as in their mobility in bed and getting in and out of bed, even when the stimulator was off. One participant could pick up a cup and drink from it – something he could not do before.” There’s no doubt there will be some exciting times ahead as this vital research begins to build hope and offer tangible results to those living with an SCI. At long last, it really does seem that making the impossible possible might very well become a living reality. ■

Neuromodulation, Prof. Edgerton says, means many of the body’s functions are changed. Notably, respondents see improved sensory function, bladder and temperature control, sexual function, improved blood pressure, and Anyone with an SCI who wishes to be individual movements such as standing, stepping, considered for participation in the trials can trunk control and upper limb function. register as a volunteer. To be notified as soon as this is online, email edge@spinalcure.org.au. It’s a focus on upper limb and hand function that will begin the initial phase of Project Edge, explains Wallace. He cites results published in

To learn more about Project Edge and see the launch video, visit www.projectedge.org.au

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FEATURE

TAKING THE BULL BY THE HORNS Fiona Jackson, Editor, accord

Hard-working country boy and entrepreneur, Brett Stevenson, credits his resilience to the love of his family and friends and says it’s optimism that has driven him to continually strive to be the best he can be.

rett Stevenson presents a calmness that belies the first forty-something years of his life. Born in Dubbo in central-western NSW, Brett spent his formative years on the land at Geurie, where his parents farmed cattle, sheep and grain. At the age of 11, he left for boarding school in Sydney, spending his holidays and the first year after graduating high school back on the farm helping his Dad before deciding to undertake a Bachelor of Commerce at the University of Newcastle. Armed with his degree and farming experience, Brett landed his first job working for Dalgety in wool, cattle

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and fat lamb futures. In 1983, with the deregulation of the Australian dollar and interest rates, Dalgety was bought by ANZ Bank and in 1984 Brett was transferred to New Zealand to set up the futures exchange there. “It was a crazy time. Interest rates rose from 100 per cent to 200 per cent and right up to 1500 per cent in a day. It was a big experience for me. I was the boss and I needed to hire people, set everything up and get everything going. It was a lot of responsibility for a young bloke,’’ he says. In 1986, back in Australia restless, Brett joined an investment bank, Midland

FEATURE Bank. There, Brett’s job was working with companies such as BHP, CSR and Boral on their treasury management, fixing interest rates and locking in currencies.

Brett with his wife Jo.

“Midland and Macquarie Bank brought currency options and interest rates options to Australia and I was doing that until Midland decided to set up a 24 hour order cycle around the globe co-ordinated in London. It was 1987, so I married my girlfriend Jo and off we went. We had a great life in London. We lived in Sloane Square, Chelsea and Bob Geldof lived across the road,’’ he says. Brett says the crash of the financial markets in 1987 impacted greatly on the industry world-wide. When they got back to Australia the market was contracting and consolidating. He spent the next five years in charge of the Midland Australia (later to become UBS Australia) futures business. The sector was no longer on fire; margins were tight and bonuses slim. In 1992, Dalgety Australia approached Midland for help setting up wool price risk management after the Reserve Price Scheme collapsed. Brett was allocated responsibility for the project in addition to his futures management role, then the floor of the futures exchange closed and Australia went to screen trading—a massive shift for the whole sector.

Brett set up an office in the city but after six months, they were struggling so Brett decided he needed to review what the business was doing and diversify. Under AgRisk Management he set up Market Check—a partnership with Peter Talty— and took advantage of government funding to start educating farmers on how to manage commodity price risk. For the next six years Brett travelled extensively around Australia delivering educational workshops to wheat growers on what to expect and how to prepare themselves for life post-deregulation. “I spent the next while travelling around the bush running education sessions. At the same time I decided to set up the same for wool. I became the everywhere man. I travelled a lot but nearly always made it home at weekends to the family,” he says.

I’ve always pushed myself to achieve and been committed to this, so while life has flipped a bit, I am enjoying what the world is about, just with a different perspective.

“Funnily enough, the exchange that we set up in New Zealand was the first screen traded market in the world, so whilst New Zealand was one of my first big roles in my career it also led to what eventually took my In October 1996, their third child Max was job away,” he says. born. Unfortunately he had a major heart In 1991, Brett and Jo welcomed their first defect. Max underwent surgery and is now child Jacqui, followed by Hugh three years fit and healthy, but it was a worrying time later in 1994. In 1993, he also started what for the young family. he calls his “agricultural episode”. “I finished In the early 2000s and just prior to the up with the bank and joined Dalgety drought of 2002, the business duo parted as Head of Group Risk, which involved ways and Brett retained Market Check. managing their treasury and their exporting businesses.” “It was a nightmare. The government In November 1994, after Wesfarmers bought Dalgety, Brett decided he had had enough of the corporate world.

“I was passionate about introducing better price risk management practices in Australian agriculture, I thought I could run my own business, run my own race, so I set up my own little business called AgRisk Management (a name that was decided over dinner with friends at a restaurant),” he says.

ceased their funding for education right when drought hit. I had more than 300 growers in the Market Check educational groups and no more government funding, so my client numbers went down to 40. By the start of 2006 we were starting to do a bit better and then we went into the 2006 and 2007 drought which was worse than the 2002 one,” he says.

From that low point Brett built the business back up and by 2009, business was www.scia.org.au

FEATURE strong and employed a team of seven. In January 2010, taking a break from their busy work lives, the Stevensons were on a family holiday at Avoca beach when, during his final swim before driving the family back to Sydney, Brett dived off some rocks into the water and broke his neck. He sustained a C5/C6 injury. What followed was a helicopter flight to Royal North Shore Hospital for initial treatment before he was moved in February to Royal Ryde Rehab where he stayed until July. Life for the family and the business changed irrevocably and once home from rehab, Brett needed to invent a new challenge for himself. The family moved into an apartment so they could build an accessible home, and Brett threw himself full steam into his exercise program at NeuroMoves plus various other therapies to increase his function. “A lot happened in this time. Jacqui finished school, Jo went to work pretty much full time in the business

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and everyone pitched in with my rehabilitation. We even won an Australian Small Business award in 2014. It was pretty much the Brett Stevenson show for a while,” he says. Today, the Stevensons have moved into the dream home they designed, complete with accessible pool and gardens. Jacqui, now 26, is a landscape architect; Hugh, 23, is at Macquarie University completing a degree in commerce and law and Max, 20 is in his second year at Australian National University completing a degree in commerce and science. Brett continues to push himself physically and has completed several open water swims with his sons. Earlier this year he even returned to Wellington in New Zealand with his wife Jo for the first time since he worked there in the 1980s. “Jo’s pretty amazing; she found another gear she didn’t know she had. Market Check received the 2014 Australian Small Business Champion Awards in Agribusiness so it is doing well, and

we are very grateful for the time we have together and the life we have both worked hard for,” he says. Brett says his resolve and determination hasn’t changed since his spinal cord injury, but the direction for this has. When he isn’t exercising and pushing his body he works as much as he needs to and he spends as much time as he can with family and friends. “I’ve always pushed myself to achieve and been committed to this, so while life has flipped a bit, I am enjoying what the world is about, just with a different perspective,” he says. ■

DAILY LIVING

Prevention is key to avoid contractures Unfortunately for many people living with spinal cord injury (SCI) and other neurological conditions, contractures are commonplace. Prevention is key, but how do you treat them once diagnosed to reduce pain, discomfort and impact on function? Tamara Dandridge, Physiotherapist

ontractures are a common complication, often associated with neurological conditions such as spinal cord injury (SCI), acquired brain injury, stroke and cerebral palsy. They can be characterised by a reduction or loss of joint mobility, which can have an impact on a person's function, cause pain, physical deformity and restrict activity and participation. The causes of contracture can be either neural or non-neural in origin. Nonneural causes can include immobilisation from casts or splints, often used to stabilise fractures, heterotopic ossification, pain or paralysis. Neural causes are generally due to the presence of spasticity or muscle over-activity, known as hypertonia. Regardless of origin, the primary cause is prolonged immobility of a joint or joints. Diagnosis includes examining the position of joints at rest to assess whether they are sitting in a normal position. Then, where possible, voluntary movements are observed, with a focus on spasticity detection. Spasms can be described as increased tendon reflex activity, resulting in tight muscles and involuntary movements. Observing limb movements can help to differentiate between simple immobility versus neurological involvement. Finally, joints are moved through their full range of movement to assess for reduced range. Methodical diagnosis, undertaken by a trained clinician, can detect whether loss of range is due to muscle over-activity or due to structural changes in soft tissue, or a combination of the two. This can then inform treatment.

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Where a contracture is detected, there are a number of treatment modalities that are widely practised. These can include stretches, continuous passive movement, serial casting, splinting, Botox injections and surgery.

Where a contracture is detected, there are a number of treatment modalities that are widely practiced. Stretches are perhaps the most frequently used treatment. However once a contracture is present, it is currently unclear exactly how frequent or how prolonged the stretch must be to elicit permanent lengthening of soft tissue, resulting in increased joint mobility. Serial casting involves immobilising the affected joint in a stretched position that is tolerated by the recipient and then progressively increasing the range as muscle and tendon fibres are lengthened. Splinting relies on the same principle and has been shown to be effective in upper limb contractures. Passive continuous movement does exactly what it says: a joint is placed in a device that provides continuous movement to the joint and can be set to a specific range of movement. These are commonly used for joint restriction caused by orthopaedic surgery, such as knee replacements. However, these are not suitable where

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POLICY & ADVOCACY

Squeaky Wheel

Contributors:

Greg Killeen, Senior Policy and Advocacy Officer (pictured above), has been working with Spinal Cord Injuries Australia (SCIA) since July 1991, initially as an Information Officer before joining the Policy and Advocacy team in 2009. He is also actively involved in a number of community, disability and government advisory committees as an individual or as a representative of SCIA.

Tony Jones (pictured above) has been working with Spinal Cord Injuries Australia (SCIA) for five years as a Policy and Advocacy Officer. Until recently, he also spent three years working as a Researcher and Policy Adviser to NSW Parliamentarian Jan Barham MLC. He has a degree in communications, and enjoys making a positive contribution to improving the quality of life for people with a disability.

NSW Wheelchair Accessible Taxis (WAT) As reported in the winter issue of accord, the NSW Taxi Transport Subsidy Scheme (TTSS) subsidy increased on 1 July and TTSS participants should by now have received new TTSS voucher books. The old TTSS subsidy vouchers (with a maximum $30 subsidy) are still valid up until late 2016. The TTSS subsidy increase is part of a number NSW Government reforms introduced after it reviewed, and subsequently deregulated, point-topoint transport services, such as taxis, hire cars and ride sharing services such as UberX. Deregulation has created greater competition amongst the transport providers. Although it is a benefit for commuters, especially for those trying to get home in the evenings who have traditionally waited long periods for booked taxis or in taxi rank queues, deregulation is having a negative impact on many taxi operators/drivers, including Wheelchair Accessible Taxis (WAT). SCIA's NSW Point-to-Point Taskforce Transport Review submission raised concerns that deregulation could cause WAT operators/drivers to leave the industry. This would adversely affect transport options for people with physical disability due to ride sharing services taking a share of passengers without disability, plus taxi operators/ drivers having higher operational costs compared to ride sharing services. Other transport options have become available to the general community, including car sharing services such as GoGet and Car Next Door. GoGet recently launched its first wheelchair accessible vehicle located at Royal North Shore Hospital, Sydney and anyone with a wheelchair accessible vehicle can make their car available through the Car Next Door scheme. Additionally, whilst Uber Taxis include WATs, bookings made through that carrier are unable to utilise the NSW TTSS to subsidise the fare. This is a major deterrent for TTSS participants and it’s unlikely that any participants would book WATs through Uber Taxi.

18 accord magazine

A review of the NSW Taxi Service is scheduled for 2016, and although the terms of reference aren’t publicly available as yet, SCIA will be advocating to ensure WAT drivers have appropriate training delivered by wheelchair users. The WATs are regularly inspected to ensure wheelchair restraints are working, and the WAT booking service is able to direct WAT drivers to accept bookings by people with disability who have been waiting longer than the allocated time, for example. SCIA's Policy and Advocacy team would like to hear from TTSS participants to find out if the NSW Government’s transport reforms have made any difference to the WAT service, particularly in relation to booking response times. Please contact us at info@scia.org.au or phone 1800 819 775.

Osmolax® included on the Paraplegic and Quadriplegic Program SCIA’s systemic advocacy to have Osmolax® included in the Paraplegic and Quadriplegic Program (Program) was successful, seeing it approved by the Pharmaceutical Board Advisory Committee (PBAC) at its recent meeting. Osmolax® is a laxative similar to Movicol, but is now being prescribed for people with a spinal cord injury who are over 50 years of age and who have blood pressure issues. The PBAC has informed us that it has written to the sponsor of Osmolax® to inform them of their recommendation. The PBAC is now working to amend the relevant legislation to have Osmolax® available as part of the Program as soon as possible. Program products are provided free of charge via the Pharmaceutical Benefits Scheme. Eligible people can order products from BrightSky Australia (New South Wales), InTouch (Queensland) and Independence Australia (Victoria). The relevant legislation that lists which products are available as part of this Program can be found at: www.legislation. gov.au/Details/F2016C00424

Squeaky Wheel

POLICY & ADVOCACY

NSW Life Support Rebate We have contacted Mr Anthony Roberts MP, NSW Industries, Resources and Energy Minister, and Ms Jillian Skinner MP, NSW Health Minister, advocating that people with paraplegia who use power wheelchairs be eligible for the NSW Life Support Rebate (Rebate). Access to the Rebate to assist with the cost of electricity needed to charge batteries is currently available for people with quadriplegia who use power wheelchairs. The Rebate program responsibility sits with Mr Roberts, whose department reviewed the program in 2014 to include people with quadriplegia who use power wheelchairs. SCIA's Policy and Advocacy team highlighted that eligibility needs to be related to a person’s disability which requires them to use a power wheelchair. Mr Roberts rejected the request but included SCIA on the stakeholder list to consult for the program review. The Rebate is also available to people using Continuous Positive Airways Pressure (CPAP), Bilevel or Variable Positive Airways Pressure (BiPAP or V-PAP) machines. An application form can be downloaded at: www.originenergy. com.au/content/dam/origin/residential/ docs/your-account/NSW_Government_ Life_Support_Rebate_Form.pdf Also, the Federal Government’s Essential Medical Equipment Payment is available to eligible people with disability to assist with the electricity costs associated with operating items on its equipment list. Details can be found at: www. humanservices.gov.au/customer/services/ centrelink/essential-medical-equipmentpayment

National Disability Advocacy Program funding As mentioned in the winter issue of accord, the National Disability Advocacy Program (NDAP), that provides funding for citizen, family, legal, individual and systemic advocacy, is being reviewed. NDAP funds SCIA’s advocacy services, with funding only guaranteed until 30 June 2017.

The Federal Government recognises that systemic advocacy services will be funded outside the National Disability Insurance Scheme (NDIS), so SCIA anticipates the NDAP review will recommend funding continues. State and territory governments will cease funding the long-established advocacy services as the NDIS rolls out. The full NDIS implementation in NSW is due by 30 June 2018 and nationally by 30 June 2019. As people with disability access a wider variety of support services and in conjunction with people with disability being ineligible for the NDIS, it is anticipated there will be an increase in the need for advocacy services. The NDAP review sought feedback on various issues. This included questioning if advocacy services should be provided for every service type or specialise in just one or two, and whether advocacy should be provided to people with disability who live in rural, regional or remote areas. Additionally, the review invited response on how well the government avoided gaps between support provided by the NDIS and and NDAP-funded advocacy. It also asked what mechanisms could be put in place to ensure information on systemic issues reaches the right people and organisations.

The Federal Government’s Essential Medical Equipment Payment is available to eligible people with disability to assist with...electricity costs...

SCIA’s submission included: • Th ere are benefits when advocacy services specialise in one or two areas www.scia.org.au 19

POLICY & ADVOCACY

Squeaky Wheel

only as their expertise can then be more focused. However, if the client requires a different type of advocacy service they may need to be referred to another agency which may have a waitlist. • E xtra government funding should be provided for the set up, training and use of telecommunication technologies for advocacy agencies to employ with specific client categories as appropriate. This should facilitate a quicker response and better outcome for clients as well as reducing the costs and resources associated with travel, accommodation and wages for face-to-face visits, particularly in rural, regional and remote locations. • T o avoid gaps between the support provided by the NDIS and advocacy funded by the NDAP, SCIA supports the development and implementation of capacity-building resources and training for people with disability that would empower them to self-advocate.

possible mechanism to ensure • A information on systemic issues gets to the right people and organisations, could be for the Department of Social Services (DSS) to set up a web-based repository where advocacy agencies could post systemic advocacy issues. This information would enable other advocacy agencies to consider collaborating to support the systemic advocacy by providing information and resources if it had addressed a similar issue, or offer to share resources. This process could reduce the duplication of workload and resources. This may also achieve a quicker and improved outcome, and the systemic advocacy activities and information can be updated on the repository until completed.

State and territory governments will cease funding the long-established advocacy services as the NDIS rolls out.

The NDAP review and submissions are available at: http://bit.ly/adv_fund ■ For further information on how SCIA's Policy and Advocacy team can help you, please contact 1800 819 775 or visit www.scia.org.au.

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scia.org.au

REGIONAL ROUND UP

Our regional people Spinal Cord Injuries Australiaâ&#x20AC;&#x2122;s (SCIA) regional team advocates for the rights and entitlements of people with disability living in regional areas. They are committed to creating independence, dignity and unlimited opportunities for people living with spinal cord injury. Our team looks forward to hearing from you. Lee Clark Northern Rivers Shop 27, Alstonville Plaza, Main Street, Alstonville NSW 2477 T: (02) 6628 3409 M: 0421 055 992 E: northernrivers@scia.org.au Craig Lees Central West/Mudgee PO Box 1140 Mudgee NSW 2850 T: (02) 6372 1892 M: 0413 367 523 E: centralwest@scia.org.au

New accessible outdoor gym is a first for Kyogle and a hit with residents Lee Clark, Northern Rivers

Kyogle Shire Council unveiled a new outdoor accessible gym and community mosaic on 30 June. Kyogle is leading the way, as this facility is the first of it's kind in New South Wales. I was lucky enough to be invited to consult with council during the planning stages of the gym, advising on suitable equipment and access to the area. A partnership between Kyogle Shire Council and Far North Coast Ability Links made the project possible through grant funding from the NSW Government Department of Sport and Recreation. The development includes four pieces of gym equipment suitable for people of all abilities, including users of wheelchairs, scooters and other mobility aids. Plans are now in place to install an accessible toilet and shelter so it can become a space which is open to everybody to use. Trying out the equipment at the launch of the new accessible outdoor gym in Kyogle.

Glenda Hodges New England 20 Murray Street Tamworth NSW 2340 T: (02) 6766 6422 M: 0427 257 471 E: newengland@scia.org.au Mel Gorman Illawarra/South Coast Suite B, Level 9, Crown Tower Wollongong Central, 200 Crown Street, Wollongong NSW 2500 T: 02 4225 1366 E: illawarra@scia.org.au

New town footpath for Iluka The Lower Clarence Access Committee has been very active in identifying areas needing upgrading for better access. Iluka, an important tourist destination, was identified as one such location. The town has a high percentage of aged residents and younger people with disability who use mobility aids, so being able to get out and about in this picturesque riverside community is important. A new section of path almost one kilometre long now stretches from Sedgers Reef Hotel and meanders through the nature reserve out towards the main beach. 22 accord magazine

REGIONAL ROUND UP

Ballina installs Changing Places toilet facility The very popular holiday destination of Ballina is the first in NSW to install a fully accessible Changing Places toilet facility, located at the Wigmore Arcade carpark in Tamar Street, right near the bus transit centre. People living with severe and profound disabilities will now enjoy comfortable access to facilities when out and about in the Ballina town centre. A Changing Places toilet facility provides specialist equipment, including an adult-sized change table and ceiling hoist. According to the Australian Institute of Health and Welfare (AIHW), there are around 200,000 people with a disability who require assistance such as that offered by a Changing Places toilet. However there are only a small handful of Changing Places or adult change facility toilets available in Australia, posing a major barrier to social inclusion. Ballina Shire Council don’t see the installation of the Changing Places facility as an extravagance, but a necessity so that residents, visitors and their carers can visit Ballina and have suitable amenities available. The council is very proud to have the first fully accredited Changing Places facility in NSW. The Changing Places facility can only be accessed using a Master Locksmith Access Key (MLAK). For more information about MLAK keys contact Council on (02) 6686 4444. For more information on SCIA Northern Rivers, call (02) 6628 3409 or email northernrivers@scia.org.au

The first drive-thru post box Peter Bannon, New England

About 15 years ago two former chairpersons of the Armidale Access Committee, Don Ireland and Greg Gambetta, received some photos of a drive-thru post box in Queanbeyan, ACT. They wrote many letters to Australia Post sharing with them this novel idea. Unfortunately, all responses inferred Armidale was adequately serviced with road side mail boxes.

“This is a great outcome for Armidale and the people who Peter Bannon ”with Joyce at the would be well served with such a facility, MrBarnaby Joyce said launch of Armidale's drive-thru post box.

Mr Fahour said while Australia Post had in the past taken the position that the proposal could not be supported due to safety concerns, he’d been advised that the issues had been discussed with Armidale City Council and each one could be addressed.

Australia Post supplied a post box which was officially opened on 21 May by Barnaby Joyce MP and myself. There have been some problems with the current location and mail box configuration but Armidale Regional Council and Australia Post have indicated their willingness to carry out whatever alterations are needed to make the drive-thru post box usable for its original concept. The Community Mutual Credit Union has been working extremely hard with Armidale Regional Council to have all aspects right before the drive-thru ATM is installed. All parties involved are now fully in support of this unique project which, when completed, will be the first drive thru post box and ATM facility in Australia. For more information, phone (02) 6766 6422 or email newengland@scia.org.au Peter Bannon is a member of SCIA as well as an active member of the Armidale Regional Council’s Advisory Committee. He has been a very involved and dedicated to working for the improvement of accessibility for all people in his regional area. Peter is well respected and well versed on access and community matters.

Tourism in the spotlight Mel Gorman, Illawarra and South Coast

Accessible tourism is in the spotlight not just in the Illawarra but the whole of the South Coast. I was fortunate enough to attend a workshop organised by NSW Department of Family and Community Services (FACS) recently which was aimed at improving access to tourist attractions, recreational activities and public events for people with disabilities and their carers on the South Coast.

The Community Mutual Credit Union suggested the possibility of a drive-thru ATM in the same vicinity as the drive-thru post box.

It was inspiring to see so many individuals and organisations promoting inclusive tourism through their own projects. Having this input was beneficial for FACS in their planning for how they can assist on a broader scale.

A petition was organised in 2014 to garner public interest for the drive-thru post box, collecting over 600 signatures in support of the idea. The potential users of this facility were pointed out to Peter King, Australia Post’s Operations Manager.

We are able to relate very closely to access issues as we are currently undertaking our own accessible restaurant project in the Illawarra. We recently formed a committee of volunteers to help gather information on accessibility in local venues.

Many meetings were held with the Armidale Access Committee, Dumaresq Council, Community Mutual Credit Union, Australia Post and all interested people, but it wasn’t until the letter, proposal and petition was presented to the Deputy Leader of The Nationals and Member for New England, Barnaby Joyce MP, that a phone call was made to Australia Post CEO, Ahmed Fahour, who gave his immediate authority.

We look forward to raising awareness in the community and creating a valuable resource not just for those who live in the region but for those visiting. Please don’t hesitate to contact me on (02) 4225 1366 or illawarra@scia.org.au if you would like further information or to be part of this exciting project. cont'd on page 25 ▶ www.scia.org.au 23

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REGIONAL ROUND UP

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Sharing accessibility across the Illawarra The last few months have been eventful for SCIA in the Illawarra. We had Scope Home Access come to our offices for a presentation on what they offer and how they can assist our members. With the National Disability Insurance Scheme (NDIS) fast approaching in our region, this was great timing to prompt members to think about how they can maximise their independence at home. We also had a very successful lawn bowls day in conjunction with Wheelchair Sports. A great turnout from our members and families with a lot of people being first time bowlers, it was a learning experience for everyone! We have had some extremely positive feedback and would like to thank Warilla Bowling Club for their generous support.

Wireless internet rollout for regional and rural consumers

It would seem that some contractors can be a bit rough with the installation; prone to rushing and cutting corners if you don’t keep an eye on everything. In this instance the tradesmen wanted to install the NBN modem at the closest corner of the house to the node – saving themselves both time and money allocated to the installation. A valid concern is significant reduction in connection speeds if the Wi-Fi router was to be installed right up the other end of the house to living areas. This consumer insisted the modem be installed centrally in the home to avoid reception issues. The contractors also wanted to install the modem and cabling high up the wall which would have been an annoying eyesore if they went ahead with it. In a nutshell, all aspects of your modem outlet should definitely be considered and discussed with your contractor prior to starting any work. If you would like to see if or when NBN is available in your area, you can view the roll-out map at https://www.telstra.com.au/ broadband/nbn/nbn-rollout#map. This link provides an option to enter your address details to ensure the most accurate information. For more information on the Central West region call us on (02) 6372 1892 or email centralwest@scia.org.au.

Craig Lees, Central West

The National Broadband Network (NBN) is connecting rural and regional consumers which is great news for the residents of NSW central west region as it will bring the region up to par with the rest of the state. Residents will have the choice of either fixed line or fixed wireless NBN services and as less labour intensive infrastructure is required in smaller communities, wireless broadband is already up and running in many relatively isolated areas including Gulgong, Dunedoo, Gilgandra, Coolah, Lightning Ridge, Mumbil, Yeoval and Forbes. Most of the smaller communities on fixed wireless should enjoy substantially better speeds than their city counterparts, due in part to the technology used and the relative lack of congestion on country networks. According to NBN, rural users can access the internet at download speeds of up to 50Mbps – which is up to 10 times faster than many existing ADSL speeds.

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Larger communities will rely more on fixed line NBN to service homes and businesses, using fibre optic cable to transfer data at speeds that, in theory at least, near the speed of light. The advantages of fixed line service are reliability and the near impossibility of succumbing to network congestion. This fibre optic technology will also phase out traditional copper phone lines by 2018, so almost everyone will need the NBN at some point. At present, fixed line service is available partially or fully in some larger towns such as Orange and Dubbo. Medium size towns such as Mudgee, Bathurst, Young and Cowra still have some way to go before comprehensive fixed line installation is completed. Nevertheless, fixed line connection is getting closer every day. Government funded contractors are responsible for the installation of fixed line NBN in regional homes and businesses. I was given some good information by a consumer who recently had an NBN fixed line connection installed in her Dubbo home.

www.ability.org.au 02-99079736 Helping you do more

www.scia.org.au 25

INFORMATION AND RESOURCES Get off your “But”: How to end self-sabotage and stand up for yourself by Sean Stephenson Sean Stephenson reveals how to banish self-doubt using his own struggle with a rare and painful disease. He approaches a wide array of topics including lack of motivation and goals. Borrow from the SCIA library or go to: http://amzn.to/2bR4Zkl

Moving Violations: War Zones, Wheelchairs, and Declarations of Independence by John Hockenberry Whether riding a mule up a hillside in Iraq, navigating his wheelchair through Middle Eastern sand or auditioning to be the first journalist in space, John Hockenberry is determined not only to bring back the story, but prove that nothing can hold him back. Borrow from the SCIA library or go to: http://amzn.to/2c3tCsP

Amy’s (Relentless, Active, Nutty, Persistent, Outrageous, Roller Coaster) Life! The Ups, Downs and Sideways Life Experiences Living with a Disability by Amy Alexander Amy sustained a spinal cord injury aged 21 and began writing articles to share her experiences through a series of essays and personal development guides to inspire you to roll up your sleeves and tackle obstacles in your own life. Borrow from the SCIA library or go to: http://amzn.to/2c3u0Yg

Beyond Embarrassment: Reclaiming Your Life With Neurogenic Bladder and Bowel by JoAnne Lake and Julia Parker In 2009, JoAnne Lake was diagnosed with neurogenic bladder and writing became her therapy and a way to connect with others who shared her diagnosis. Borrow from the SCIA library or go to: http://amzn.to/2cpXZgB

Born on the Fourth of July: 40th Anniversary Edition by Ron Kovic, with foreword by Bruce Springsteen This New York Times bestseller, 40th Anniversary Edition details the author’s life story from being a patriotic soldier in Vietnam, to his battlefield injury, to his role as the country’s most outspoken anti-Vietnam War advocate from his wheelchair. Borrow it from the SCIA Library or go to: http://amzn.to/2cdxLwo

What “Never Give Up” Looks Like by Tom Brotzman “What ‘Never Give Up’ Looks Like” describes a life ravaged by calamity and restored by hope, proving that when all seems lost, you can arise from brokenness and rediscover life’s unrelenting beauty. Borrow it from the SCIA Library or go to: http://amzn.to/2bAEyjS

Everything is Possible by Martin Sibley After growing up with Michael Palin’s TV travels, Martyn Sibley realised there was more out there than Cambridge and set off on a series of travel adventures that took him from Mexico to Catalonia. Borrow it from the SCIA Library or go to: http://amzn.to/2bAQzUR

Beyond Stroke: Living Independently with One Arm by Kate Ryan This handbook provides instructions for practical everyday life tasks and recreational activities to live with confidence and independence in the real world. Borrow it from the SCIA Library or go to: http://www.ryanpub.com.au/order.htm

These publications and resources are available for loan or download from the Spinal Cord Injuries Australia SCI Resources and Knowledge Library. To borrow, visit library.scia.org.au, call 1800 819 775 or email library@scia.org.au. In addition to the library and a comprehensive range of information on our website, SCIA offers help and advice to people with a spinal cord injury and similar disability, their families and carers through their Information Services. SCIA can be contacted by phone on 1800 819 775, email info@scia.org.au, or visit scia.org.au/information-services 26 accord magazine

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Call 1300 304 802 or visit BlueBadgeInsurance.com.au ^Discounts for the Blue Badge Insurance Comprehensive Motor Vehicle Insurance will be applied to the base vehicle rates subject to the customer holding a permanent Disability Parking Permit and/or the vehicle has been converted for use by a driver or passengers that have a disability. The discounts do not apply to the Blue Badge Roadside Assistance Optional Benefit. Underwriting criteria will be applied to the consideration of the risk. Additional excesses will apply to drivers under 25 or those drivers who have held a full Australian drivers licence for less than 2 years. This offer may be withdrawn at any time #Not available with any other offer. Consider the PDS at www.BlueBadgeInsurance.com.au to decide if the product is right for you. Blue Badge Insurance Australia Pty Ltd, ABN 59 162 783 306, (AR No. 438547) is an Authorised Representative of The Hollard Insurance Company Pty Ltd, ABN 78 090 584 473 (AFS Licence No 241436).

www.scia.org.au 27

TECHNOLOGY Graeme Smith, Ability Technology

Simple switches

WeMo - cheap environmental control system? I have been looking at the Belkin WeMo system and it seems to be a very inexpensive DIY environmental control option that I can control with my iPad. Are there any limitations with it? The WeMo is readily available and is relatively low cost for this type of technology. You can use an iOS device to set up and control various WeMo modules that include light switches (these need to be installed by an electrician), light globes, powered appliances (that can be plugged into a power socket), and security cameras. It also features a movement sensor (say, to turn on the light automatically when you come in at night). We’ve tested some of these and found them pretty reliable, apart from some issues we had with a globe. But the WeMo won’t help you with infrared devices (such as TV). It has limited accessibility for those who cannot touch the screen. However, our research has found a solution that enables control of WeMo devices through an iOS device by voice – contact Ability Technology for details.

For many years I have been using a jellybean switch to control my computer and my environmental control system. It is now very difficult for me to manage this switch, as I can only move one finger, and even then, I can only manage a light press. What other options are available? There are other options available for you, but you would need to trial these to be sure they meet your needs. The Micro Light switch requires only 10 grams of pressure and provides tactile and auditory feedback. The Finger Button 30 attaches to your finger and requires 75 grams of force to activate. Another option is the Candy Corn Proximity Switch, that does not require a physical touch to activate—just move your hand to within 10 millimetres of the switch to activate it. Visual and auditory cues are provided when the switch is activated. There are also switches that operate by breath (sip, puff or blow). In short—yes, there are options available. But you should arrange a trial of these to be sure they are suitable for you.

Word processing on a tablet? I would like to use a tablet computer because of its portability. I could use it in bed and on my wheelchair. However, I currently use a desktop computer and I do a lot of word processing. How realistic is it to do word processing on a tablet computer? I can type with my knuckle. Word processing options have certainly improved on tablet devices, with many advanced features now finding their way into devices such as the iPad. However, you are still dealing with a smaller screen —usually between 10 and 12 inches. This makes it more difficult to proof read what you have written, to lay out your written work and edit or make changes. There are some ways you can reduce these difficulties, such as using text-to-speech to read back what you have written (it’s surprising how many mistakes you pick up by listening to what you have written rather than reading it). You can also connect your tablet quite easily to a larger screen, for more intensive word processing. For more detailed word processing, a tablet is a compromise, but the problems may not be insurmountable. You can have the best of both worlds.

Speech recognition on an iPad I have been using Dragon Naturally Speaking speech recognition on a Windows computer. I use it to dictate text but also to open applications and other control options. It is really helpful. I would like to use the same facility on a tablet such as an iPad. Is that possible? There is a version of Dragon available for the iPad and from our testing, it is very accurate. But there are some limitations. For example, you need to have access to the internet for the transcription to work. Also, you are limited to working in the Dragon app, but you can send the text to other apps or copy and paste it elsewhere. It is useful but nowhere near as powerful as the Dragon version you have been using on a computer. Apple’s own speech recognition is almost as accurate as the Dragon app, and it still requires the internet, but it has the advantage of being available whenever the iPad keyboard pops up. This versatility is a big advantage. You can improve the accuracy of both systems by using an external microphone. 28 accord magazine

Ability Technology is in Northern and Western Sydney, Newcastle, Canberra, Brisbane, Melbourne and Adelaide. Contact our team at info@ability.org.au

TECHNOLOGY

Whatâ&#x20AC;&#x2122;s new in assistive technologies? Mel Gorman, SCIAâ&#x20AC;&#x2122;s Regional Officer in Illawarra, recently attended the Australian Assistive Technology Conference in Queensland. There were some promising presentations and products that she would like to share with our readers. The JACO robotic arm system is designed to give more independence and assist in achieving daily tasks. It can be used to open doors, drink from a glass, scratch parts of the head or body, pick up objects off the floor and much more. www.medifab.com.au

Eyegaze assistive technology products use eye control as a computer access method. It is good for computer users who access email, the internet, e-books, music and generally anything work or leisure related. The Eyegaze system and voice control technology work well in combination. www.eyegaze.com

A range of self-balancing wheelchairs by the Specialised Wheelchair Company use the abdominal muscles to move forward and backwards. This futuristic wheelchair has interchangeable wheels that enable you to travel on sand, gravel, rough and steep inclines. www.swco.com.au

and Automatic & Manual Ramps Automatic Docking System Hand Controls Systems Automatic Lifts Handrails & Support Safety Barriers

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www.scia.org.au 29

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REVIEW

Angels come in all shapes and sizes Shirley Carpenter, Information Services Manager, Spinal Cord Injuries Australia

or the Bloom family, an angel in the form of a little broken magpie came into their lives when they needed it most.

Penguin Bloom Written by Bradley Trevor Greive Photography by Cameron Bloom Published by ABC Books

The future didn’t look too appealing to Sam Bloom after sustaining a devastating spinal cord injury from a fall, when the magpie that the Bloom family decided to name Penguin turned up. It is hard to imagine that much can be said to improve one’s frame of mind when trying to adjust to life after a spinal cord injury. For Sam, having a sympathetic ear in the form of Penguin the magpie was just what she needed to start to understand her new life and work out how she was going to live. Penguin Bloom, written by Bradley Trevor Greive and with photography by Cameron Bloom (husband of Sam and professional photographer), is a simple but deeply meaningful book filled with beautiful, funny, touching and adorably cute images of Penguin and other members of the Bloom family accompanied by a wonderful story of how Penguin arrived to change everyone’s lives for the better. The story unfolds using humour and sensitivity to paint the picture of how Sam and her family nursed little Penguin back to health, who then stuck around to help guide the family through the emotional and physical maze that results from having a spinal cord injury. The book can be enjoyed for the stunning images alone but I guarantee the story will leave you with much to contemplate and think about as you go on with your daily life. The meaning of life, why good and bad things happen, whether things happen for a reason or is it just that “things happen”? If Sam hadn’t leant against the railing, if the railing wasn’t defective, if the Bloom family hadn’t gone to Thailand for the holiday, if Sam had never met Cameron...life is a series of events and happenings—sometimes in your control and sometimes not. What you learn is that a spinal cord injury can happen to anyone at any time.

Penguin Bloom is not a “how to”, step-bystep guide book telling people what they need to do to adjust to life with a spinal cord injury but it does provide a glimpse into how such an injury has a profound effect on a person’s life. We learn that the world has to be assessed from a totally different place and perspective and that it is not just about not being able to walk. The physical environment suddenly becomes difficult to navigate, there are health issues to overcome, there is chronic pain, changes in sexuality to accept, dealing with the loss of spontaneity and the difficulty in relating to people who don’t know how to handle your disability. Adjusting to living a life after a spinal cord injury can be a pretty daunting task. Penguin Bloom made me laugh, cry, wonder at the beauty and cruelty of nature and in the end reminded me of the importance of working out what really matters in life. “Making your way back to who you were and, in the process, learning who you really are can be a very difficult journey.” For the Bloom family, one little broken magpie helped Sam and the people around her on the difficult journey to understand what is important, the power of love and how to just get on with living and loving life. The family thought they rescued Penguin but as they came to learn, it was really Penguin who rescued them. A true story of hope and courage, this book would be a great addition to your coffee table and 10 per cent from each purchase is being donated to SpinalCure Australia, whose sole aim is to find treatments for spinal cord injury through the promotion and funding of medical research. Visit http://www.penguinthemagpie.com/ for details on where to purchase the book and while you are there, visit SpinalCure Australia www.spinalcure.com.au to read about the exciting research that is currently taking place. ■

www.scia.org.au 31

LEGAL RIGHTS

Disability discrimination is not only unacceptable; it is against the law By Jade Tyrrell, Slater and Gordon Lawyers

in the person with a disability being treated less favourably compared to the way in which another person (without the disability) would be treated in a similar situation. For this reason, indirect discrimination is often more challenging The laws in Australia that set out the to successfully establish if the matter anti-discrimination framework include proceeds to a tribunal or to court, as it but are not limited to the Disability is based upon the results of a particular Discrimination Act 1992 (Cth) (DDA), environment and a “comparator”. There state or territory anti-discrimination laws are numerous cases that deal with how and—in an employment context—the Australia’s anti-discrimination laws Fair Work Act 2009 (Cth). should be interpreted and laws in each Direct disability discrimination state and territory may vary slightly. involves a person treating another Given the complexities that are often person less favourably because of that involved in any discrimination claim, second person’s disability. However, legal advice could greatly assist potential the prohibited discrimination may also complainants’ understanding of the antibe indirect and as a result it may be discrimination framework. less recognisable to those who are not Depending on location, the relevant legally trained. This does not render such Anti-Discrimination Board or Equal discrimination any less legitimate. Opportunity Commission typically deals Indirect disability discrimination with state complaints made in the first generally occurs when a person does instance. In contrast, the Australian not make “reasonable adjustments” for a Human Rights Commission (AHRC) person with a disability, where this results initially addresses complaints made isability discrimination is rightly prohibited in numerous areas of life including in education or sport, at work, in the provision of access to premises or good and services, and in other areas.

State/territory antidiscrimination agency

under the DDA. Below is a table which briefly outlines some matters which may be considered pros and cons of each in practice, noting that there are a number of similarities between the state and federal systems. This list is by no means intended to be comprehensive and legal advice should generally be sought prior to making a complaint. While it is important that a claimant or potential claimant remains informed in relation to their rights, it is often advisable to navigate the avenues available with the benefit of considered and tailored legal advice as early as possible to help assess the next steps. Obtaining legal advice may also assist to clarify and simplify the complaint process; this may be particularly helpful where the discrimination involved has already had a harmful impact upon mental health and further stress should be minimised. ■ Jade Tyrrell is a Lawyer at Slater and Gordon Lawyers. For more information, visit www.slatergordon.com.au Australian Human Rights Commission

Conciliation process is private and flexible, and in some states (and the ACT) conciliated agreements can be registered with a tribunal for added enforceability.

Limited to state tribunals should matter proceed i.e. complainants have no avenue to file in a federal court should the conciliation process fail (though the relative informality of a tribunal may be beneficial).

Conciliation process is private and flexible.

A complaint which does not settle and proceeds to court must be substantially similar to the AHRC complaint (i.e. amendments are very limited).

Complaints are dealt with relatively promptly.

Respondents are not required (though are encouraged) to engage meaningfully in the process.

Complaint is based on federal Disability Discrimination Act 1992 (Cth) which has national coverage. This may be beneficial, depending on the circumstances.

Respondents are not required (though are encouraged) to engage meaningfully in the process.

Typically no action is required to proceed to have the complaint heard in a tribunal should it not resolve at the agency level (i.e. no filing required, except in Victoria).

A complaint which does not settle and proceeds to a tribunal must typically be the same as the initial complaint.

The AHRC may or may not ask for the respondent to prepare a response before the conciliation, depending on the circumstances.

Delays may be incurred if the matter proceeds to court.

32 accord magazine

MEMBER PROFILE

Not afraid to be seen and heard By Susan Wood, Media and Communications Co-ordinator, SCIA

When Vickie Hudson sustained a spinal cord injury (SCI) in November 2014 after slipping and falling down some stairs, she had no idea how different, yet wonderful, living with T-6 incomplete paraplegia would be.

ehabilitation has been slow for Vickie both physically and mentally, but it’s the small steps she’s made with continuous work on herself that has brought her closer to feeling positive about living independently again.

Previous to this disability I had no idea. It’s not just the legs, it’s everything else that is in there.

“I tell people that it’s like going to the gym. When you first go everything is sore, but you go back and things aren’t as sore and in a month’s time you realise that the muscles are building up,” she says. “For me, I have minor improvements and you think ‘Why do I bother?’, then out of the blue I stood up, pain free. It just took me somewhere that I thought, ‘This is worth fighting for’.” Since Vickie sustained her injury, she is more aware of the gap in society for people with disabilities and firmly believes that breaking society’s barriers is key to a more inclusive society. The rollout of the National Disability Insurance Scheme (NDIS) is an important step for Vickie and her independence, and there is hope with the NDIS that she will be able to go to physio weekly and also have some building modifications done that will enhance her life at home. One of the most important ways Vickie believes people with disabilities can advocate for themselves is to be as exposed to the public as possible. She isn’t fazed when people watch her transfer in and out of cars. “It’s about awareness. It’s not in your face. When people see a wheelchair it’s usually for older or aging people. It’s amazing how many people I have come into contact with who say they know someone in a wheelchair,” she says. “There’s a lot more out there than we realise. It’s exposure and exposure stops the discrimination and brings awareness.” ■ www.scia.org.au 33

CALENDAR

Events Industry

Social

NOVEMBER 16

8 November The Etiology of Pressure Injuries: Deformation is a Cell Killer L’Aqua, Cockle Bay Wharf, Darling Park, Sydney www.permobil.com.au 16-18 November Australian & New Zealand Spinal Cord Society ASM 2016 Stamford Grand Adelaide Hotel, Glenelg, Adelaide www.anzscos2016.com 21-22 November Wound Management: A Practical Guide Rydges Sydney Central Surry Hills, Sydney http://bit.ly/wound_conf 23-24 November Regional Support Worker Conference “At the NDIS Frontline” Central Coast/Hunter, NSW nds.org.au/events/1450658867 30 November Stories from the Smallest Room: Webcast @ 6pm Register here: webcasts.com.au/scia

DECEMBER 16 3 December International Day of People with Disability www.idpwd.com.au

34 accord magazine

12 November Let’s try wheelchair sports! Shellharbour City Stadium http://bit.ly/WheelchairSports

19 November Ten Pin Bowling Strike Bowling Bar, North Ryde http://bit.ly/TenPinNov16

DECEMBER 16 17 December SCIA Christmas Party North Ryde RSL http://bit.ly/XMas_Lunch

JANUARY 17 21 January Aim for Fun—Archery Sydney Olympic Park Archery Centre http://bit.ly/ArcheryJan17

ADVERTORIAL

Help hundreds of top online retailers give to SCIA Every time you shop online you could be donating to SCIA without it costing you an extra cent. Shopnate is an online shopping network featuring hundreds of Australian and international online retailers such as The Iconic, SurfStitich, Strawberrynet. com, iSubscribe, Dan Murphyâ&#x20AC;&#x2122;s, ASOS and Bonds. Each time you make a purchase through Shopnate with these online retailers, they will donate a percentage of the purchase amount to SCIA. You will pay the exact same amount that you would normally, and Shopnate add on the donation amount from their own pocket.

participating travel sites. Simply sign up to Shopnate, select Spinal Cord Injuries Australia and start shopping! To make donating through Shopnate even simpler, install the Easy Fundraiser app on your computer and whenever you visit a partner online retailer, the Easy Fundraiser appears at the top of your page making it easy for you to buy products via Shopnate.

Visit scia.org.au/shopnate today!

What a great way to get your shopping done whilst also helping SCIA support people with spinal cord injury.

If you are travelling this holiday season, you can even book your hotels, travel and car hire through Shopnate! Hotels. com, Booking.com, Expedia, Budget, Avis, Etihad Airways areServices just90x130 some of the 2016 0929 SCIA PQBSA OL.pdf 1 29/09/2016

Join SCIA and Coloplast for an interactive webcast and learn all you need to know about bladder and bowel care, no matter where you live. The experts from Coloplast, including a registered nurse, will talk about the latest products and methods available to suit your needs, and what the National Disability Insurance Scheme means for continence care.

Whether you are shopping for the perfect Christmas gift or grabbing a bargain in the New Year sales, Shopnate has you covered.

FROM THE SMALLEST ROOM

5:33:40 PM

SCIAâ&#x20AC;&#x2122;s Peer Support team will share their own personal experiences and tips and tricks they have picked up along the way to make life easier.

November 30 at 6:00pm Register for this free event here:

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For more information email info@scia.org.au or call 1800 819 775

www.scia.org.au 35

SOCIAL MEDIA

We’re excited to announce a new partnership with leading car modifiers, Problem Management Engineering. CEO Bill Georgas and his team love a challenge and can convert all sorts of vehicles—even boats! Check out this video to see how they helped get one guy back on the water. For more about our partnership visit bit.ly/PMESCIA

Our Senior Policy and Advocacy Officer, Greg Killeen, spoke to the ABC about accessible transport, the new accessible GoGet CarShare car and how self-driving vehicles will benefit people with a disability in the future, for an upcoming episode of the ABC’s Australia Wide program.

Go Team SCIA at City2Surf!

Ever wanted to fly? Stella from March On Australia has reviewed Ifly from the perspective of someone with C5 complete quadriplegia.

facebook.com/spinalcordinjuriesaustralia

linkedin/company/spinal-cord-injuries-australia

youtube.com/spinalcordinjuriesau

twitter.com/SCIAust

The Autoslide promotes inclusion by giving people a greater level of self-sufficiency. It enhances an active lifestyle by making exit/ entry effortless. No more fumbling with doors or waiting for assistance, the Autoslide is your personal doorman.

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NOW

10-11 May 2017 Sydney Olympic Park, Homebush 24 May 2017 Royal International Convention Centre, RNA Showgrounds Brisbane

Your choice, Your control On display will be the latest in assistive technology, aids and equipment, as well as options for mobility, communication, travel services and lifestyle options. The Independent Living Expo is an event that welcomes all those involved in ensuring better outcomes for people with disability of all ages. The Expo is of interest for everyone, whether a consumer, care giver, allied health practitioner, equipment funder or support organisation.

Visit our Facebook page or www.atsaindependentlivingexpo.com.au for all the details Media Partner

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www.wheelability.com.au About Us At Wheelability we are all about Making Life Easier. Wheelability is a new online business focusing on providing choice and an easier shopping experience to wheelchair users. Steve Mollison the founder is a wheelchair user and suffers like a lot of users of not having the time or mobility to go to multiple disability outlets to see what is the latest and greatest is in the wheelchair world. Our Products Some of the product range we supply but are not limited to: - Ergonomic grip push rims - Lightweight components making the chair lighter and easier handle i.e. carbon fibre wheels - Soft roll casters making for smoother more comfortable rides - Suspension forks - Dedicated range of bags design specifically for use on a wheelchair. - Composite light weight brakes for different levels of disability. - Puncher resistant or solid tyres to prevent flats and the list goes on Wheelability aims to provide these and much more at competitive prices. We are constantly growing the product line in an effort to become a one stop shop for wheelchair consumables where price, choice and convenience are key. We also provide multiple types, variations and colours of each product so that you can compare and select the one that will best suit your needs and budget. All this with the convenience of having the product delivered directly to your door to make life easier.

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