Accord - Spring 2015

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Spring 2015

Grassroots Democracy Joan Hume, SCIA President, has been honoured for driving forward the campaign for disability rights.

+ Spinal Cord Injury Awareness Week | Public toilets revealed | Reality check | Snorkelling in Fiji

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FROM THE CEO PETER PERRY

Listen to O - <K6 O ^DK7- “What are the outcomes that people living with a spinal cord injury are hoping to achieve?�

The Australian Spinal Injury Alliance (Spinal Alliance) brings together eight community organisations from across Australia with the common goal to provide a national voice for people living with a spinal cord injury. These eight organisations, which include Spinal Cord Injuries Australia (SCIA), take a holistic view of the world and aim to further promote the social model of disability, which emphasises the rights of every individual to participate fully in society. This approach is in contrast to the medical model of disability, which sees a disability as something that must be corrected and controlled through medical intervention. The medical model is rapidly being replaced in global thinking with the social model, although surprisingly it still has adherents; for some reason, when it comes to disability, governments seem to pay more attention to medical opinions than the opinions and experiences of those living with a disability. Hopefully, with the full implementation of the National Disability Insurance Scheme (NDIS), people’s lives will become “more about aspirations than bodily functions�, as John Walsh so concisely put it at a recent conference. SCIA led the creation of the Spinal Alliance over recent years with the intention of better coordinating the efforts of all the current state-based organisations and giving a national voice to people affected by spinal cord injury. Right now, and over the remainder of 2015, members of the Alliance will be reaching out to key stakeholders across government, insurance, clinical, research and other sectors to promote the idea of a national spinal cord injury strategy. Such a strategy has been talked about for some time but, with the imminent rollout of the NDIS, it’s an idea whose time has come. The key question behind a national strategy is: what are the outcomes that people living with

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spinal cord injury are hoping to achieve? It’s a question that hasn’t often been asked before; when it has been asked, the answers have likely been different, depending on who is answering. People living with spinal cord injury might answer one way, their family members might answer another way, and there will be differing answers among well-meaning medical professionals and people working for charities. Of these, which is the most important voice? Those actually living with spinal cord injury should be heard above all others. But the way the world has been designed up until now, that voice is only heard occasionally and in a piecemeal way, issue by issue. There might be opinions expressed by people on issues such as personal care or transport or physical access, for example. If there are no overall goals for people affected by spinal cord injury, how can governments, clinicians, charities and others plan their activities? How can these activities be coordinated to achieve better outcomes? How can we make sure there are no major gaps in the service system, and there is as little waste as possible by not having organisations duplicating efforts? A national strategy will deal with these issues in three steps: 1. Agreeing to a set of outcomes that people living with spinal cord injury desire; 2. Coordinating efforts across all relevant organisations to work towards these outcomes; and 3. Measuring and reporting on progress towards these outcomes. In this way, all of those involved in striving to improve the lives of those affected by spinal cord injury will be trying to achieve and measure progress towards the same things: the things of most importance to those who matter most. `

JOAN HUME FROM THE PRESIDENT

O E 3 -8^- K V- K - -687q Dr Ed Watts, who had been a Board Director of Spinal Cord Injuries Australia (SCIA) for the past two-and-a-half years and, most recently, its Chairman, died suddenly and unexpectedly in June. Ed was a beloved figure within the disability community—a quiet achiever with a tenacious spirit, a gentle soul, an impish smile and an ironic, selfdeprecating turn of phrase. He had a passion for social justice and for tirelessly working to provide greater opportunities for people with disabilities to participate more equitably in decisions that directly impact upon our lives. His first foray into direct action was to wheel a specially constructed motorised chair around Australia to raise funds for spinal research. This was a daring and, indeed, astonishing feat for a person with quadriplegia who had little hand and arm function and was unable to control his body temperature. After gaining his doctorate and settling in to academic life, Ed’s thoughts turned to service to the spinal-injured community. He joined the ParaQuad NSW board in 1996. By then, he had served as a North Coast Regional Representative for the Australian Quadriplegic Association (now SCIA) and as the Chair of the North Coast Home and Community Care forums. During his 15 years as a Director and, later, President of ParaQuad NSW, he shepherded the organisation through profound and, to some, agonising changes. Ed’s term was characterised by the highest ethical standards. For him, it wasn’t enough for a decision to be legal or not, it also had to be the right thing to do. (For more on Ed’s time at ParaQuad NSW, read Tony Leggett’s tribute on page 4.)

xz 3 . 3# 3 the public can reach in through the veil of disability and see this individual’s competence ‌â€? subsequently elected Chairman earlier this year, a position he held until his unexpected death. SCIA has been undergoing considerable structural and corporate transition and facing new challenges within the current National Disability Insurance Scheme (NDIS) climate. Also, the SCIA constitution is under revision. Had Ed been with us for longer, I’m sure he would have continued to bring the same deep conviction and ethical approach to both of these issues. In an article Ed wrote for accord magazine last year, he described himself with typical understated humour as a “highlevel quadriplegic ‌ not high-level as in important, like a diplomat. Rather, highlevel as in severe ‌â€? Well, to us he was important, much more important than a diplomat – he was more like a prince. He graced our stage with enormous accomplishment, charm, intelligence and wit. He once said: â€œâ€Ś it does matter that the public can reach in through the veil of disability and see this individual’s competence ‌â€? Ed’s legacy is the high level of competence he brought to everything he did, and to making the lives of people with disability, especially those with spinal cord injury, more greatly fulfilled. For more on Ed’s life, turn to the tribute on page 4 by Tony Leggett. `

In 2013, after serving for two terms on the Home Care Advisory Board and as a member of the NSW Accessible Public Transport Forum, Ed was appointed a Director on the SCIA board. He was

www.scia.org.au

TRIBUTE

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20 April 1956 – 28 June 2015

The disability movement lost a titan when Dr Edward Watts passed away this June. Ed was 16 when he had his accident on the family farm near Grafton, leaving him with C4-5 quadriplegia. He was riding a horse that chose to throw him off headfirst into the only tree in the entire paddock. When I enquired if such equine belligerence earned it a trip to the glue factory, Ed’s response was sanguine: “no, the horse lived a long and prosperous life.� Post-accident, Ed’s parents Nora and Ted were determined that the young Edward Watts would not waste one ounce of his intelligence. To that end, Nora scribed for Ed throughout his undergraduate and postgraduate studies. I don’t know what’s more mind-boggling: the fact that Ed completed a PhD in Applied Economics in the 1970s (before the internet, the Disability Discrimination Act and modern-day conveniences) or that he did it while shivering through Armidale’s winters at the University of New England. Ted built many devices for Ed including a motorised wheelchair, which in 1985 Ed wheeled around the entire continent of Australia to raise awareness for spinal cord injury. The trip took five months, and I believe he was the first person with quadriplegia to complete such a mad endeavour. Such feats are a testament to Ed’s persistence. Ed could be stubborn, but he had the tenacity to keep trying long after most people would have given up. Ed met his wife, Susan, at Macquarie University on 8 June 1989. Two years later—to the day—they were married at Macquarie University. Ed and Susan made a fantastic team. They were the type of people who took lost souls under their wing, which they promptly did with me when I moved to Ryde in the mid-1990s. To this day, I’m eternally grateful for their hospitality, humour and guidance. N

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Ed volunteered with numerous organisations, but ParaQuad NSW needs a special mention. Ed and I joined the ParaQuad NSW board in 1995 and 1997 respectively. It didn’t take long for us to realise the board, however well meaning, had badly lost its way. The board culture was equal parts medical-model patriarchy and charity-model chook raffle. Indecision had paralysed the board to the point the Homebush headquarters were almost condemned. To mangle a metaphor, Ed decided it was time to “drive the money changers from the templeâ€? by nominating for ParaQuad NSW President. Space prevents me going into details, but Ed’s decision to run for President was an arduous process taking several years. Ed deserves accolades and respect for staying the course as a largely unsung hero. Ed ensured ParaQuad NSW consolidated its operations onto modern, properly accessible premises, and adopted a more professional ethos. The constitution was modernised and the AGM postal voting system was reformed for greater transparency. It was perhaps a bridge too far for ParaQuad NSW and Spinal Cord Injuries Australia (SCIA) to merge, but that’s a discussion for another day. As far as I know, Ed is the only person to have been ParaQuad NSW President and SCIA Chairman. I’m pleased Ed joined the SCIA board, as I think philosophically it was a better fit with Ed’s strong sense of social justice. For Ed, it was not enough to do things legally, they also had to be done ethically and be the right thing to do. Ed was a gentle soul who achieved much through wit and wisdom rather than hairy-chested shouting. Joan Hume, SCIA President, described Ed as “a beautiful manâ€?. He was that and more—the likes of which we shall not see again. â–

NEWS

NDIS gets moving in New South Wales, Victoria and Queensland

Jessica Hansson wins

The New South Wales (NSW) and Victorian Governments have released their National Disability Insurance Scheme (NDIS) rollout plans. Early transition sites have also been announced for Queensland in Townsville, Palm Island and Charter Towers. The NSW Government has provided information that eligible people with disability will be able to start accessing support under the NDIS when it is rolled out across NSW between 1 July 2016 and 30 June 2018. From 1 July 2016, people living in Hunter New England, Southern NSW, Central Coast, Northern Sydney, South Western Sydney, Western Sydney and Nepean Blue Mountains will be able to access the NDIS. From 1 July 2017, the NDIS will be in place across the rest of NSW, and people living in Northern NSW, Mid North Coast, Sydney, South Eastern Sydney, Illawarra Shoalhaven, Murrumbidgee, Western NSW and Far West NSW will be able to access the NDIS. These locations reflect the current NSW disability and Health service districts. For more information on the Queensland transition sites visit www.ndis.gov.au/news/ news-ndis-queensland-early-transition. For more information on the Victorian roll out visit www.ndis.vic.gov.au. For more information on the NSW roll out visit www.ndis.nsw.gov.au.

Willing to Work inquiry underway A national inquiry is underway into the practices, attitudes and Commonwealth laws that impede the equal employment participation of Australians with disability and older Australians.

Her interest in working with clients with traumatic injuries began while completing her master’s degree. As part of the degree, she co-authored the research project, ‘Feasibility of ballistic strengthening exercises in neurologic rehabilitation’, which was published in the American Journal of Physical Medicine & Rehabilitation in 2014.

“Willing to Work is most timely as employment rates for both older people and those with disability remain unacceptably low,� says AHRC Age and Disability Commissioner, Susan Ryan.

You can make your thoughts and experiences known through submissions and consultations. Submissions are accepted until Friday 4 December 2015. Consultations are being conducted in

ACU launched the Outstanding Alumni Awards this year to highlight the contribution that their alumni make in the community. Jessica has a Bachelor of Exercise Science and a Masters of Applied Exercise Science (Exercise Prescription) from ACU.

The Australian Human Rights Commission (AHRC) is holding the inquiry called Willing to Work: National Inquiry into Employment Discrimination Against Older Australians and Australians with Disability.

“We all lose when willing people are excluded from the workforce. Research by Deloitte shows that increasing the older workforce by 5 per cent would bring an extra $48 billion annually to Australia’s GDP.�

Jessica Hansson, Spinal Cord Injuries Australia’s (SCIA) Team Leader of Exercise Services in Melbourne (pictured above), is the inaugural Young Alumnus of the Year at the Australian Catholic University (ACU).

She continues to pursue her passion of working with people with spinal cord injury and is committed to growing her expertise and experience in exercise physiology. every capital city and regional centres from July to November 2015. For more details on the inquiry and having your say, visit www.humanrights. gov.au/our-work/disability-rights/ projects/willing-work-national-inquiryemployment-discrimination-against The Inquiry will report on its findings and recommendations by July 2016.

Jessica is also Lecturer in charge of Neurological Analysis, Prescription and Rehabilitation at ACU’s Melbourne campus and a co-author of Outcome Measures for Exercise Physiologists, a publication of the accreditation body for Exercise and Sports Science Australia (ESSA). In 2013, Jessica also won the Exercise and Sport Science Australia (ESSA) Practicum Supervisor of the Year award. www.scia.org.au 5

NEWS

The 2016 program is available in October. “Sydney Festival is proud to present international work by some of the world’s most extraordinary artists including Peter Sellars, Toni Morrison, Rokia Traore, Robert Wilson, Tom Waits and Jette Steckel‌,â€? says Festival Director Lieven Bertels. One of this year’s theatre highlights is the play Woyzeck. “The piece is wild and lurid and exciting and it inspires your imagination. It makes you fear for the characters and reflect on your own life,â€? writes musician and actor Tom Waits. Spinal Cord Injuries Australia (SCIA) encourages all people with disability, their family and friends to attend the Festival. There are a large number of free as well as paid events around the city and Darling Harbour, and outdoor concerts in The Domain as well as around the city on Australia Day.

International as well as home-grown talent will light up performance stages to celebrate the Sydney Festival’s 40th anniversary in January. “The New South Wales Government is proud to support Australia’s biggest and best summer festival. Over four decades, it has grown to become a wonderful showcase of home-grown and international talent,� says NSW Deputy Premier and Minister for the Arts, Troy Grant. During the three-week Festival from 7-26 January, events will be held in various indoor and outdoor locations and performance spaces. With a vast array of music, film, dance, opera, theatre and exhibitions on offer, there is definitely something for everybody.

Home Care Services Quality home care and support, ‘Working in Partnership’ as your trusted advisor: t Individualised support plans developed to suit your needs t CSP packages – comprehensive budget support systems t RN support t Approved attendant care provider: LTCS, ADHC/FACS and multiple other funders AINs and RNs are available for 1 to 24 hrs Call us to discuss your requirements: Alliance Health Home Care Services Tel: 9310 6511 Email: homecare@alliancehealth.com.au Website: www.alliancehealth.com.au

The Festival has a ticket pricing policy that offers people with disability the lowest priced ticket category for each event. Plus it accepts the Companion Card. Discounts are also available when purchasing tickets for multiple events. Although all Festival venues, services and facilities should provide equitable access in compliance with the Sydney Festival Disability Action Plan, occasionally access barriers have occurred in the past. However, Festival organisers respond when issues are raised. If people have any adverse experiences, SCIA recommends raising these issues directly with the Festival organisers. Visit www.sydneyfestival.org.au, phone (02) 8248 6500 or email mail@sydneyfestival.org.au for more Sydney Festival 2016 details. Companion Card information is available by phoning 1800 893 044, emailing companioncard@nds.org.au or visiting www.nswcompanioncard.org.au

Tim McCallum reaches super The Voice Performer Tim McCallum made it through to the super battle round of this year’s The Voice Australia contest on Channel Nine. During the blind auditions, Tim who has quadriplegia sang Giacomo Puccini’s ‘Nessun Dorma’. Three of the judges’, Ricky Martin, Delta Goodrem and the Madden Brothers (Joel and Benji judged as one), turned their chairs in the hope that Tim would choose one of them to coach him through the competition. Tim ultimately chose Ricky. Tim went on to win the battle round, where he outperformed musical theatre singer Mark Stefanoff in their duet of the ‘The Impossible Dream’. Although Tim sang well in the following super battle round against opera singer Dione Baker and cabaret singer Naomi Price, it was Naomi who won this round. Tim sang ‘You Raise Me Up’, while Dione sang ‘Climb Every Mountain’ and Naomi sang ‘Defying Gravity’.

Accredited

Wo r k i n g i n p a r t n e r s h i p !

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Visit www.9jumpin.com.au/show/thevoice/artists/timmccallum to hear Tim’s performances on The Voice.

What’s your goal? Walk On can help you get there. Places are now available for SCIA’s leading exercise program - Walk On. Short and long term programs to suit all levels of spinal cord injury and other neurological disabilities.

www.scia.org.au | 1800 819 775 BRISBANE

SYDNEY

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NEWS

Shining a light on violence The International Day for the Elimination of Violence against Women will intensify the spotlight on violence against women and girls with disability in Australia on 25 November. A significant proportion of women and girls with disability experience physical, sexual, psychological and economic violence, says a joint report released earlier this year by Women With Disabilities Australia (WWDA) and the University of New South Wales (UNSW). “A national survey undertaken in 2013, found that violence is present in the lives of approximately twenty-two per cent of women and girls with disabilities who had accessed service support in the preceding 12 months,� the report says. “Given that many women and girls with disabilities do not and/or cannot and/or are prevented from using and/or accessing services, the prevalence of violence against women and girls with disabilities is acknowledged to be substantially higher than the already alarming 22 per cent suggested by the national survey findings...� The report also highlights that women with disability are 40 per cent more likely to experience family violence than women without disability.

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Factors that contribute to violence against women generally are exacerbated for woman and girls with disability. These factors include women and girls having fewer opportunities, lower status and less power and influence than men and boys, the report says. Understanding and stopping the violence is best achieved through a human rights approach, according to the report. This includes recognising that women and girls with disabilities are more likely to experience and be at risk of violence due to multiple and intersecting forms of discrimination. Moreover, the report draws attention to the fact that discrimination affects women differently depending on how they are positioned socially, economically and culturally. Unless violence is understood from this perspective attempts to stop it may inadvertently perpetuate systemic violence, the report concludes. For more details and a copy of the report, visit the following: http://tinyurl.com/k5husfr

Bowel care barriers under Have you experienced problems accessing help with your bowel care routine?

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Women with disability are also four to 10 times more likely than other women to experience sexual victimisation, the report adds.

Connection

Where do you start?

A study exploring the problems people with spinal cord injury experience when accessing help with their usual bowel care routine is being conducted by a team of researchers at Royal Rehab in Ryde. If you, or someone you know of, lives in New South Wales and has experienced problems accessing help to complete bowel care, you are invited to participate in the study. Participants will be interviewed about challenges they have encountered in accessing help with bowel care outside a specialist spinal service. This might have been in another type of hospital ward or service, in a community service or in an aged care service. The interview will last about 15-30 minutes. Most interviews will be conducted over the phone. The study has been approved by the Northern Local Health District Human Research Ethics Committee (reference number LNR/15/HAWKE/177). You can get involved in this study up until the end of December 2015.

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

For more information about the study contact the coordinating researcher, Associate Professor Julie Pryor, Nursing Research and Development Leader at Royal Rehab on julie.pryor@royalrehab.com.au or 02 9808 9223. www.scia.org.au &

FUNDRAISING

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football club, and they wanted to make a difference for all Australians living with a spinal cord injury. Big Day Off is a low-cost and effective way for companies to engage their staff while supporting the vital services that SCIA provides to people living with spinal cord injury and the research for a cure funded by SpinalCure.

Almost 100 companies participated in the inaugural Big Day Off, auctioning off an additional day of annual leave to their employees to raise money for Spinal Cord Injuries Australia (SCIA) and SpinalCure Australia. In total, 1,200 staff registered to win a total of 166 days off work (33 weeks), raising nearly $20,000. This initiative was inspired by James McQuillan, a talented sportsman who sustained quadriplegia after an Aussie Rules Football injury in Albury in 2014. It is the brain child of a group of seven Albury individuals who knew the accident was bigger than the

Team SCIA gets moving A big thank you to all our amazing fundraisers who joined Team SCIA this year. From shaving heads to tackling runs around Australia, you all put in such an incredible amount of time and effort in support of people with spinal cord injury. Some of our star supporters included Katie Smith (top right), who raised nearly $2,000 by taking part in her first-ever half marathon; Rebecca Tarrant, who raised more than $3,000 by shaving her head; and the wonderful students, teachers and parents at St James’ Anglican School (pictured right) in Western Australia, who raised a huge $3,000 by organising a runathon. We also had our biggest team yet in the City2Surf (bottom right) and a big thank you goes to those dedicated staff members at ASG who put on their running shoes and took on ‘Heartbreak Hill’ in support of SCIA. To join Team SCIA and fundraise for our services, phone (02) 9356 8201 or visit scia.org.au/how-you-can-help 10 accord magazine

“We were proud to be one of the first businesses to sign up for Big Day Off and provide equal opportunities for our staff to participate and be rewarded while supporting a cause we value,� said Paul Joss from Joss Group. “In fact, we were so impressed with the concept that we offered up 10 opportunities for our staff to win a Big Day Off on us.� SCIA also took part, with our Head of Operations, Chris Nicholls, holding the winning ticket. “This is a great initiative and SCIA is grateful to be one of the beneficiaries,� Chris said. “I also look forward to taking my day off.� For more details on how your company can take part next year, visit www.bigdayoff.org

Thank you to Slater and Gordon SCIA’s Walk On program in Perth, Western Australia, received an $8,078 grant from Slater and Gordon’s Community Fund to buy brand-new gym equipment, including a Monster G6 Smith Functional Trainer and wheelchair scales. Walk On is SCIA’s intensive exercise therapy program that allows people with spinal cord injury to make huge gains in function and mobility. The new equipment will have a big impact on the lives of the people who use the program and we’d like to give our heartfelt thanks to all those at Slater and Gordon for making it happen. Slater and Gordon is Australia’s largest consumer law firm and its staff actively support SCIA. Their latest assistance involves supporting us to map and review over 190 accessible toilets as part of our wider Accessible Toilets Project in NSW. Thank you.

Singing to raise vital funds Talented artists Jae Haydon, Billy Demos and The Stone Fruits are back again, performing 30 songs in 30 days to raise money for SCIA in October. Show your support here: www.give. everydayhero.com/au/team-sing-for-sci

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Once known as decubitus ulcers, pressure ulcers, pressure sores or bedsores, pressure injuries have been reclassified into six stages in New South Wales. These stages form part of the NSW Ministry of Health Pressure Injury Prevention and Management policy directive released in March 2014. Stages one to four cover intact skin through to full tissue loss and are easy to recognise. But two additional classifications— unstageable and suspected deep-tissue injury—acknowledge that the severity of some pressure injuries is more difficult to detect and requires further vigilant observation or treatment. An unstageable pressure injury is a wound with a layer of dead tissue or a hard crust or scab covering the wound bed, so the true depth of the injury is unknown. Removal of this tissue reveals the true stage of the injury. Nevertheless, for heel wounds with a dry, intact, adherent, non-fluctuating hard crust or scab, it is generally recognised that the crust or scab is protective and should not be removed. A suspected deep-tissue injury is intact skin with a purple blister-type wound.

Cost of injuries The direct treatment cost of pressure injuries can be high, as well as the indirect costs associated with loss of health, wellbeing and independence. Interestingly, private health insurer Medibank, in recent contract negotiations with private hospitals, has been seeking to exclude paying for hospital-acquired pressure injuries because it sees these injuries as largely preventable. If these costs are not paid by the insurer, the hospital may pass them on to the patient.

This leads to the beginning of red spots/areas. Coupled with prolonged sitting in bed, pressure injuries can occur quickly. Silicone-based sacral dressings can also be used to prevent shear injuries. These dressings can be placed on intact (non-damaged) skin. They are multi-layered and designed to move with the shearing force while the skin underneath remains still and protected. Vigilant checking is essential to ensure the dressing remains in place. On intact skin the dressing can stay in place for many days, is waterproof and can be peeled back (for visual skin checks) and reapplied without the need to change the dressing. Regular skin checks and feedback are also essential, as is raising your heels off the bed whenever possible. Visit http://scia.org.au/health-and-sci-facts/skin-and-sci to learn more about looking after your skin. â–

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Stopping shear forces So what can you do at home—and demand from your hospital care—to prevent or minimise pressure injuries? Pressure injuries commonly occur on the heel and at the base of the spine and are largely due to a combination of pressure and shearing/friction. It is well known that pressure-reducing mattresses assist in the prevention of these injuries. However, the type of bed is also essential. Look for beds that offer a knee break. Applying the knee break whenever raising the bedhead is essential to prevent a shear injury to the sacrum or heel. The seemingly insignificant movement that occurs by failing to apply the knee break when the bedhead is raised causes micro damage to the capillaries in the skin of the sacral and/or heel area.

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www.scia.org.au 11

FEATURE

O# / 3 #3 .E # 3 3 Joan Hume, the President of Spinal Cord Injuries Australia, has been # @ # E 3 3# .E @ 4 & $ % " ' % ( & & "" ) * + ,-/-0

Until recently, life for people with disability could be pretty miserable. Anti-discrimination laws did not exist. Forget about going to the movies, getting a bus or taxi, eating out at restaurants, finding an accessible home to live in, finding worthwhile work or getting an education—access was an unknown concept.

People with disability felt discouraged and powerless to speak for themselves, but change was stirring. The International Year of Disabled Persons in 1981 was a major event that became a catalyst for people with disabilities to realise they didn’t have to put up with the negative and patronising attitudes of the day, and they had the knowledge, power and ability—both individually and as a group—to advocate for monumental changes to the ‘system’. Grassroots Democracy: the Campaign for Disability Rights explores the campaign for disability rights over the past four decades in Australia and was on display at the Museum of Australian Democracy at Eureka (M.A.D.E) in Ballarat in July. It is now an online exhibition on the M.A.D.E website (made. org/explore/exhibitions/disability-rights-exhibition). This is the first time that a major public institution has acknowledged and honoured the existence of the Australian disability rights 12

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movement and paid homage to some of its leaders, movers and shakers, both past and present. “The disability rights campaign has a decades-long story,� says Guest Curator Ashley Heenan. “At the same time that moratorium marches hit the streets of Australia to protest against Vietnam, so too was another grassroots movement making their voices heard. “Deinstitutionalisation of Australians with disabilities was a result of many, often unrecognised, people who wanted a better way of living and control over their lives. Greater access to public transport, buildings, employment, study, family and community was fought for by the campaign, and while there are still many gaps and omissions, this exhibition hopes to recognise just some of the campaign leaders of the past and present.� Twelve leaders of the disability rights movement featured in the exhibition at the museum, including Joan Hume, the President of Spinal Cord Injuries Australia (SCIA).

Seeds of passion Joan’s long and valuable contribution to the disability rights movement began before her accident. “Although my disability

FEATURE

Joan Hume, President, Spinal Cord Injuries Australia, 3 O# € 3 @ > where she absorbed the 3. E# @ . ;"# 3 : = www.scia.org.au $

FEATURE activism began after the car accident in which I sustained quadriplegia, my capacity for independent and critical thinking was nurtured when I was a student at Sydney University,� Joan says in words etched alongside the exhibition’s photo display. “Most of my classes were held in or around the Arts quad, where I studied archaeology, ancient history and English literature. During the 1960s and early 1970s when I attended, the university was a hotbed of political dissent, human rights advocacy and militant action. Every other day there was a protest about something or other happening. I absorbed that atmosphere by osmosis.� Joan was a high school teacher in 1971 when she had her injury and afterwards was keen to get back to work. After several months and numerous medical examinations to convince the Department of Education that she could teach in the classroom, Joan became the first person with quadriplegia to be employed by the NSW Department of Education in a regular high school. Of course, before she started work she needed to get some workplace modifications done and, to its credit, the Department of Education obliged, but then it demanded that she pay for some of the renovations out of her own pocket. When Joan went to her next school a few years later, she discovered that the supposedly wheelchair-accessible school was not so accessible, so she took her complaint to the AntiDiscrimination Board. This complaint was successful and resulted in the school carrying out modifications to make it truly accessible.

" # While working at the Australian Quadriplegic Association (AQA), now SCIA, as the Editor of Quad Wrangle (now accord), Joan cut her teeth as a disability activist. She attended her first demonstration in a wheelchair at the protest held at the opening of the inaccessible Eastern Suburbs Railway in 1979.

Genni Batterham inspired the protest rally while AQA organised a number of wheelchair users to swell the ranks of placard wavers and push their point home. Then NSW Premier Neville Wran, who presided over the opening, established the subsidised wheelchair taxi service in 1981 as a direct response to the demonstration. Since then Joan has advocated for and protested on behalf of people with disability in many arenas. To name just a few, she organised the Sydney demonstration against the Miss Australia Quest in 1983, helped to instigate amendments to state anti-discrimination law to include disability as grounds for complaint, which culminated in the Commonwealth Disability Discrimination Act 1992, and was instrumental in introducing the Attendant Care Scheme in NSW. Joan’s activism was interrupted when she became unwell with leukaemia in 2000. But after fighting it for a number of years she is ready to begin again, starting with her presidency of SCIA. Over the life of SCIA, there has always been a very strong focus on advocating for social and political change and it was recognised early on that the best people to advocate for people with disabilities were people with disabilities. Joan, along with many others, both working for SCIA and in the community, have led the way to advocate for better conditions. But Joan issues a word of warning. “Do not think that because the National Disability Insurance Scheme (NDIS) is coming the disability activist’s job is done—public transport, buildings, health services and housing are still not universally accessible,â€? she says. “People over the age of 65 with a disability will not have access to the NDIS. There is still much ignorance and discriminatory behaviour towards people with disabilities. It is even more vital today and into the future that people with a disability continue their fight for true equality.â€?â–

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FEATURE

868K Rolling up a ramp built at the right incline paves the way for many new *E 3 social inclusion and accessibility don’t 3# 8 ! accord )

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Showing at Canberra Contemporary Art Space earlier this year, Print by Numbers was an exhibition of 16 life-size portraits of people of different genders, races, abilities, ages and body types. The distorted images challenged gallerygoers to think about how and why we perceive people in different ways. The creator of the exhibition was Daniel Savage, artist and volunteer for Spinal Cord Injuries Australia (SCIA). His thought-provoking, artistic critiques on society’s attitudes are not only reflected in his artwork but also in his artwork’s accessibility. Physical access, braille, large print, audio descriptions, touch tours and sign interpretations were integrated into the exhibition so anyone could come along and enjoy the installations without worrying about making prior arrangements before they showed up. Having parallels with Daniel’s work, Spinal Cord Injury Awareness Week (8 to 15 November) will challenge the way Australians think about what social inclusion and accessibility mean for people with disability with its ‘Think I can’t; Think again’ campaign. About 12,000 people in Australia have a spinal cord injury and they don’t want other people’s perceptions stopping them from having choice and control over their lives. “Regardless of where people are going, they should be able to turn up without making special arrangements beforehand,� Daniel says. “At my local theatre they have to pull out five seats for me to attend. Why does it have to be a big deal to go out?� The ‘special treatment’ doesn’t stop with physical access. “In shops and bars the salesperson talks to the person I’m with, rather than to me,� says Heidz Hayden, Education Officer, SCIA. “I look different—maybe that’s challenging for some people, but I don’t judge.�

dangerous for people to be in chairs on the ice at the same time as the skaters. But then they changed their minds and let everyone on together.â€? Even without chairs, ice skating can be dangerous, so why the big deal about the chairs? And, Heidz says, it only costs about $100 for a portable ramp, which can be kept on hand anywhere. Daniel wants to see more thought put into implementing universal access rather than talking about inclusion. “If the focus is on universal access it switches the [power] back to the people with disability,â€? he says. “That’s because they don’t have to call some authority to ask special permission to make special arrangements before wanting to go somewhere—they just show up when they want to.â€? He also wants to do away with the “day for disabilityâ€? that some establishments hold: “It’s very frustrating being told you can access something only on a specific day or in a specific way and it just reinforces the negative view of people with disabilities as being this ‘other’, separate group.â€? Other people also need to think about how they approach someone with a disability when they’re out. “I don’t need people to get excited when they see me out at night,â€? Daniel says. “The expectations are so low—‘Look, how special, he’s at the pub.’ “I get that it’s a lack of understanding and I tend to keep calm when I respond. It’s my friends who get more frustrated by those types of comments ‌ but, in any case, it’s not my responsibility to be nice and explain my situation every time.â€?

“If the focus is on universal access it switches the [power] back to the people 4 3# / 3 „

Heidz says creating more inclusiveness shouldn’t be hard. Take travel, for example. “I have rung and double-checked to get an accessible hotel room. But then they change it to a non-accessible one at the last minute without telling me. What do they think is going to happen? That somehow it won’t make a difference. It doesn’t cost much to put a system in place to ensure this doesn’t occur.�

That said, Daniel is not backward in coming forward when he’s out, pointing out things that need changing in establishments, such as bathrooms and access.

The same applies to the humble weekend outing. “It should never have been a problem for us to get on the ice rink at Cool Yule in Darling Harbour in Sydney,� Heidz says. “First the organisers couldn’t find a ramp for us to get on the ice, but when they did we had to get on there on our own without other ice skaters—we felt like the ‘special people’ who got to play. The organisers said it was too

Nevertheless, under the Disability Discrimination Act, access doesn’t have to be provided if it causes unjustifiable hardship.

“If you have an accessible entrance for people with disability, make sure it’s not blocked with boxes and rubbish,� he says. “Better still, have an entrance that everyone comes through together.�

Daniel says it’s understandable that older buildings may be too difficult to redesign. But he thinks people and organisations that use this ‘loophole’ are under a misapprehension. By refusing to make www.scia.org.au

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changes it’s not just the person with the disability who misses out. There’s an economic benefit to making things more accessible, as a more diverse crowd of people is able to come and spend money, he adds.

“We just want to go out like everyone else‌I’m the same as everyone else, I’m Q 3 † 4 „ If worst comes to worst, Daniel makes his feelings known by taking his work and services elsewhere. “I won’t show my [art] work in galleries that aren’t universally accessible,â€? he says. $%

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Heidz says when she rolls up a ramp to a shop or other establishment and then can’t get in the door or through the place, she feels like yelling out, “Do you want my money or don’t you?â€? A frequent nightclub-goer, she says some clubs are old, unrenovated and frequently at the top of stairs. “If I have to get carried up a flight of stairs, well, so be it,â€? she says. “Until they make changes, why should I and others miss out? “[We] just want to go out like everyone else and not make a big thing about it, but most people don’t get it,â€? she says. “However, I don’t let that stop me doing my bit to advocate for change. I’m the same as everyone else, I’m just sitting down.â€? For more on Spinal Cord Injury Awareness Week, visit www.sciaw.com.au â–

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DAILY LIVING

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t surprises me that most of the toilets I audited met the Toilet Map accessibility criteria. The best toilets I found were in the large shopping centres—they were immaculate, had sliding doors and easy access, and met every criterion perfectly. The worst I found were in parks and on some train stations. They were dirty, with toilet paper on the floor, and generally smelly. My six-week volunteer audit was part of the NSW Accessible Toilet Project. Spinal Cord Injuries Australia (SCIA) in conjunction with the NSW Department of Family & Community Services is updating accessible public toilets in NSW on the National Public Toilet Map. The map provides the location of more than 16,000 publicly available toilets across Australia, helping to reduce the stress of not being able to find an accessible toilet when out and about, and providing choice, freedom and independence for people with disability to get out and enjoy their lives. Updating the toilet map aims to improve the number of accessible toilets currently listed on the map, improve the quality of information on the map (such as baby/adult change tables, cubicle dimensions and so on), promote the use of the map with other products and help toilet owners improve their facilities.

Community spirit In my experience, auditing the toilets attracted a lot of nervous looks from passers-by, especially when I took photos of the toilets. But, once I’d explained the situation and showed my credentials, most people were relieved and gracious. One woman even let me know of other toilets that needed auditing in the area. In a one-off situation, however, a man holding a pram blocked my access to the toilet. Even after explaining what I was doing, he stood there, not moving and not expressing interest in what I was saying. It made me think: What if I was in a wheelchair and needed access to the facility, would he have moved then? Rather than putting me off the auditing, this incident reinforced the reason I signed up in the first place. In my work with Slater and Gordon, I help people who have been severely injured in motor vehicle and other accidents every 20 accord magazine

day. I became involved in the project when it was strongly promoted as a staff giving opportunity in my workplace. The toilet project was a natural extension – another way to help. I felt passionate about the auditing because of the impact it would have on reducing the stress felt by people with a disability and other mobility restrictions when they are out and about and need to find an accessible toilet.

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% When I first started auditing the toilets, I visited toilets in my local area. It was easy, as I could do it as I went about my daily life: during my lunch hour, on my way home from work or taking the kids to sport/outings and the like. Then I expanded the auditing to other areas when I visited them, or spent an hour or two on weekends driving around and assessing other toilets. I also asked my kids to keep an eye out for toilets when they went to parks/ovals in other areas during their school sports days. They let me know the

location of the toilets and I went and had a look. When I explained the project to them, it was nice to see they were more than willing to help as well, even on weekends, standing with me in toilet blocks. Toilets in shopping centres, food outlets and service stations were easy to access for auditing. However, those at train stations and parks were harder, as some were closed when I turned up, so I needed to come back later. Nevertheless, auditing didn’t take long once I got the hang of it, measuring the dimensions, heights and so on. The auditing instructions supplied by SCIA were easy to understand and photos/measurements of what was expected were provided. It was quite a short process and became second nature, ticking boxes mentally and jotting down stand-outs. I’ve been told I audited 77 toilets during the six weeks I volunteered. But, personally, I wasn’t keeping count. I was proud to be a part of the NSW Accessible Toilet Project and would like to contribute again. You too can improve public toilet accessibility by volunteering as an Access Officers on the NSW Accessible Toilet Project. For more details, contact Project Manager Kelly McCann on 0412 177 643, or email accesstoilets@scia.org.au or visit www.scia.org.au/accesstoilets â–

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HEALTH

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n the US the implantation of an experimental device into spinal cord injury wounds is delivering improved sensation and movement for some people with complete spinal cord injury.

cord injury. This increases the signals sent from the remaining intact nerve axons below the level of injury, rather than new nerve axons bridging the gap below and above the injury level.

InVivo Therapeutics Holdings Corporation is trialling the implantation of the Neuro-Spinal Scaffold. The scaffold is a biodegradable device that is surgically implanted in the centre of a spinal cord injury wound and promotes healing. It acts similarly to sutures or a butterfly bandage, and degrades over several weeks.

“This is very promising. We now have an agent that may work alone or in combination with other treatments to improve the lives of many,� says the study’s senior investigator, Jerry Silver, PhD. The researchers now want to test the drug ISP in preclinical trials. More details on the research and the drug can be found at the following: http://tinyurl.com/nrl5ah2

In July, one month after implantation, one person in the trial who had no sensation or movement at S4-5 had regained sacral sensation and improved bladder function. Also in July, six months after implantation, another person had regained partial sensation from their lower ribs to their hip on their right side and had improved daily living function.

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After a person sustains a spinal cord injury a molecule in the body called C5aR exacerbates inflammation and tissue damage that hinders recovery, says UQ PhD student Faith Brennan.

Also being investigated is another new drug that may improve spinal cord injury recovery if administered early after injury. The discovery was made at the University of Queensland (UQ).

“Our study shows that drugs inhibiting C5aR can improve recovery when administered early A third person also experienced some improvement. after injury,� she adds. “This exciting discovery In May, six months after implantation, they were could form the basis for new frontline therapies able to partially extend their knee. to treat patients with spinal cord trauma.� To delve into more details about the scaffold and SpinalCure Australia CEO Duncan Wallace, whose the trial, go to www.invivotherapeutics.com organisation supports the UQ research, says the study is a great step towards developing an effective $ #

treatment for spinal cord injury. “It takes us closer Researchers from the School of Medicine at to the day when a spinal cord injury is no longer Case Western Reserve University in Cleveland, a life sentence,� he says. US, have developed a drug known as intracellular For more details on the research, visit sigma peptide (ISP) that has shown potential to www.spinalcure.org.au/exciting-discovery-couldimprove function. lead-to-new-treatments-for-acute-sci The research team injected the drug into rats near the site of spinal cord injury for seven weeks. A few ' ( ) weeks later improved walking and urination were If you’ve ever wondered why severe headaches observed in the rats. appear to affect people with spinal cord injury more The researchers believe the drug works by inducing than others, migraine research from the University the sprouting of axons (which bundle together to of British Columbia and Harvard University may form nerves) below the level of the spinal hold the answer. 22 accord magazine

The study has discovered the odds of experiencing migraine headaches are fivefold for people with spinal cord injury compared with people without such an injury. The finding is part of new research titled ‘Spinal Cord Injury and Migraine Headache: A PopulationBased Study’. Also of note in the research, people with spinal cord injury are more at risk of migraines than type 2 diabetes, chronic respiratory conditions, heart disease and stroke.

Bone health boosted Maintaining good bone health is a priority for people with spinal cord injury, and vibration may hold the key, according to a report by The Miami Project to Cure Paralysis. Over the course of our lives, mature bone tissue is removed from our skeletons and new bone tissue is formed. However, spinal cord injury increases the removal of mature bone tissue and decreases new bone tissue formation. This contributes to bone density loss and can lead to osteoporosis.

People who experience spinal cord injury and migraines also report poorer health than those with spinal cord injury and no migraines.

The Miami Project report cites research that may counteract the problem, revealing that lowintensity, high-frequency mechanical vibration Overall, the researchers say further studies are needed (LIV) may positively affect new bone formation. It may also reduce some of the actions that contribute to better understand the association between spinal to an increase in the removal of mature bone tissue. cord injury and migraines and the mechanisms underlying the association. LIV may be worth pursuing to improve bone health Once the association is better understood, improvements in treating migraines can be developed to improve quality of life. More details about the study can be found at the following: http://tinyurl.com/pzpf8ht

after a spinal cord injury, the report says. For more details on vibration and bone health research, visit www.spinalcure.org.au/can-wholebody-vibration-influence-bone-health-afterspinal-cord-injury â–

www.scia.org.au

INFORMATION AND RESOURCES *

+ /* +2 $ A website that helps people find advocacy services. People with disabilities and their carers and families can search for advocacy agencies by postcode, state or provider. 9 (

' + 3 4 + 6 by Ken Little After a one-in-a-million medical condition left him paralysed, the author talks about his initial despair followed by self-discovery and becoming a more complete person. 9 ( ! " # $ # % &

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Accessible Melbourne A Lonely Planet guide providing relevant, up-to-date advice on what to see, including tips and recommendations for travellers with special needs. 9 (

So Far, So Good: The Saga of a Broken Neck and the Good Life That Can Follow by Lee D. Goldstein The author, who has had quadriplegia for 66-plus years, gives an honest account of the sometimes life-threatening, embarrassing and hilarious moments in his life. 9 ( ! 7 % : ; $ $

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ADVERTISEMENT

" . / U 3 V . "3 3 Permobil has acquired Seating Dynamics Pty Ltd (SDL), a leading distributor of quality solutions for pressure care, mobility and positioning in the Australian market. The acquisition marks the next important step in Permobil’s strategy to provide innovative advanced rehabilitation solutions for people with disabilities. SDL was founded in 1997 with the express desire to provide life enhancing products for wheelchair users in Australia. Since that time it has established a reputation both locally and internationally for being a distributor of innovative products with the people and systems to support and market those products. Larry Jackson, President of Permobil North America said, “Permobil is dedicated to building a leading healthcare company providing advanced rehabilitation technology. SDL has an unparalleled position in the Australian market and the combination with Permobil will allow us to better serve the needs of end users in the Australian disability market.� Malcolm Turnbull, SDL co-owner, said, “Permobil has a family of products that are leaders in the assistive technology market: TiLite, ROHO and Permobil. SDL has represented ROHO and TiLite in Australia for many years. Permobil has the same commitment to the end user, excellent products and fantastic service that SDL has had. We are excited to become a part of Permobil and to see the positive impact this will have on our market.�

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Owen Dawes, Managing Director of Permobil Australia, said, “We are very proud and excited to announce the acquisition of SDL. This will accelerate our growth plans in the advanced rehabilitation market in Australia. We are growing our service offering to end users, therapists and dealers. This coupled with the experience and capabilities of the SDL staff will see us increase our reach rapidly.� For more information visit www.permobil.com.au or email info.au@permobil.com

www.scia.org.au 25

GOODS & SERVICES 3# 3 E 7 ./

Motorised walking Exoskeletons have left the realm of science fiction and walked into real life. Two currently available products are ReWalk and REX. ReWalk is a set of motorised strap-on legs powered by a battery worn in a backpack; the user walks with crutches, assisted by the legs’ powered knee and hip motion. REX is fully self-contained; the user is supported within the unit, which is controlled with a joystick. For more information on ReWalk, visit www.rewalk.com, and for a review of REX turn to page 43.

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Two online platforms that connect users and providers of paid care have been launched. The first is HireUp. It enables clients and support workers to create personal profiles, search for one another and then make contact through a digital platform. Once a match is made, clients and support workers are supported to manage their own working relationship, arranging shifts as and when required. HireUp clients pay a transaction fee on each payment processed on your behalf. Visit www.hireup.com.au for more information.

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Step Climber Northcott has launched a subsidiary, Northcott Innovation, to create innovative solutions that make for a more inclusive society. The company is already working with a number of partners, including the University of Technology Sydney (UTS). With UTS, Northcott Innovation is developing the Step Climber, an attachment that allows people who use standard power wheelchairs or scooters to climb a single step and easily navigate streets and buildings. Northcott Innovation is currently looking for manufacturing partners to make the Step Climber commercially available. For more information, visit www.northcottinnovation.com.au

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The second is Careseekers, an online matching service that brings together people looking for carers and people looking for care work. Careseekers offers three packages: basic, premium and concierge. Basic allows carer profiles to be searched and limited profiles viewed. Premium allows members to advertise jobs and search a database of carers. Concierge allows you to explain your needs to a consultant, who will create a short list of candidates and referencecheck them for you. For more details, visit www.careseekers.com.au.

Weigh yourself The Lilypad Scale is designed for convenient, portable use anywhere in your home. It folds up for easy storage under a bed or in a wardrobe. Simply wheel on, press a button on your smartphone or other device, and read your weight. Weigh your wheelchair once, then roll on any time for your weight. There’s no need to transfer out of your chair to weigh yourself. "

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Go to www.lilypadscales.com for more information.

Doing whatever it takes

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scia.org.au | 1800 819 775

REGIONAL ROUND UP

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SCIA wants to provide the best possible support to people with spinal cord injury. We can do this by ensuring our staff and the services they deliver are supported by efficient and effective resources. We are also looking to expand our services. To do this we need to be prepared to meet the needs of more people, across more locations, with more service delivery options. How are we achieving this? Over the past few months we have been reviewing our service delivery across regional New South Wales. Internally, we have better aligned the administration of our policy, advocacy, peer support and transition services to ensure our teams are better informed and connected. We are also working through the consolidation of our various information systems to better support our staff—a common activity for many organisations as they expand and develop. If you have any ideas about what you think might be useful in your area, contact me at lcowan@scia.org.au

ILLAWARRA AND SOUTH COAST / 3 = > 7 " = 7386

Watch this space: In the coming months we will be looking to better understand the needs and interests of people living with spinal cord injury across the Illawarra and South Coast. A number of forums and other events will be held throughout October and November to seek your input. Once details are confirmed, further information will be sent directly to all members in the local area. If you have any ideas about what might be useful, phone 02 4225 1366 or email lcowan@scia.org.au % accord magazine

NORTHERN RIVERS / 3 $ = > BC = 7386

With the National Disability Insurance Scheme (NDIS) expected to be rolled out in this area in 2017, we are currently organising information forums for Port Macquarie, Coffs Harbour, Lismore and Tweed to be held in early 2016. The forums will cover a range of NDIS topics, including what you can expect in your package, what funding you may receive, how you can access funding if you don’t already receive a package, and other related issues. We’ve also had requests to provide information sessions/workshops on advanced healthcare directives, wills and guardianship. We are planning to host these sessions at the same time as the NDIS information forums. Once the forum programs, venues and times are confirmed, the details will be sent to individuals on the Northern Rivers contact list, placed on Spinal Cord Injuries Australia’s (SCIA) Facebook page and included in the SCIA e-news. If you’d like more details or if there’s a certain aspect of the NDIS or other information you’d like covered in these forums, please don’t hesitate to email northernrivers@scia.org.au

7 E 3 As highlighted in the last edition, the first SCIA Fishing Competition will be held at Nambucca Valley on 21 and 22 November 2015. Nambucca Heads Offshore Fishing Club Inc. is supporting the event. The entry fee is $15 per person and every entrant receives a participation gift. This is an International Day of People with Disability registered event and is open to all people with a disability. Assistance will be provided to those who are unable to hold a fishing rod. We encourage everyone to bring along their carer if they

REGIONAL ROUND UP usually have one with them on outings. However, only people with a disability will be allowed to weigh in fish they have caught during the two days. Those competing are to sign on from 9am on Saturday 21 November at the Macksville Lions Park boat ramp, Ferry Street, North Macksville. Fishing can take place from Coffs Harbour to Stuarts Point, which gives plenty of scope to find a great spot. Nambucca Heads Offshore Fishing Club Inc. will be weighing in fish at the Macksville Lions Park boat ramp, with the final weigh-in at 4pm Sunday 22 November. Everyone is invited to join us at 6pm on Saturday 21 November for dinner at Macksville Ex-Services Club. For further information, please contact Lee Clark on 0421 055 992 or email northernrivers@scia.org.au, or contact Mark Tanner on 0432 485 118 or email spanner7058@yahoo.com.au

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The push to make New England more accessible is receiving a shot in the arm. Bruce Cole, Volunteer Peer Support Worker on the coast at Old Bar, is now on the Greater Taree Access Advisory Committee. He is advocating for the clean-up of several local toilet facilities to improve access not only for people with disabilities but also the general public. We will keep you posted on the results. Steve Austin, Volunteer Peer Support Worker, remains on the case for improved regional train accessibility to ensure recent government-agreed upgrades are implemented. As reported in the autumn edition of accord, thanks to Steve’s efforts the New South Wales Government has agreed to upgrade several train stations. This includes Armidale, which is scheduled to receive a unique 2m ramp by mid-2016. However, only time will tell if the upgrades are completed. A lack of accessible motel accommodation in the region is also under the spotlight. Tamworth recently hosted a wheelchair sports weekend, and finding appropriate accommodation for 40-plus competitors in wheelchairs proved to be a challenge. It signals that an investigation and revamp

of motel and other accommodation standards may be required. Steve’s card mornings in Armidale remain a great place to meet people with spinal cord injury (SCI) and other community members. A wide range of people are part of this very social group that meets every second Tuesday morning at Armidale Bowling Club. People with SCI and other disabilities are encouraged to come along. If you don’t know how to play cards, that’s not a problem—Steve and the other participants are more than willing to help you learn.

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Our Armidale and Tamworth information sessions are still going strong. The police spoke at a recent session about security and safety in the home and in the community. For those who missed the session and would like the handouts, the PowerPoint presentation or further information, contact SCIA’s New England office (contact details below). On a relaxing note, on 23 October, Mandy Cole is demonstrating meditation and relaxation to ease stress and encourage chilling out. To find out more about any of these activities, contact SCIA’s New England office on newengland@scia.org.au, (02) 6766 6422 or 0427 257 471. www.scia.org.au &

REGIONAL ROUND UP CENTRAL WEST 3 / = > BC = 7386

A pilot program of the Imagine Me art project has come to western New South Wales. It started in August and is running until November. One of the biggest benefits gained from attending the project is relief from social isolation. Social isolation is often compounded for people with spinal cord injury living in regional NSW. Carers of people with spinal cord injury are also welcome to participate as they too are often affected by social isolation and can similarly benefit. Imagine Me has been operating for a number of years and many Spinal Cord Injuries Australia (SCIA) members in other regions have already participated. The project presents the stories of people with disabilities through photography. It’s the initiative of artist Sue Murray, and the idea has proved more fruitful than Sue originally planned. Participants not only build creative and technical skills but also improve self-esteem and gain social support— career changes have even resulted from the project. Each program runs for approximately two weeks for about three hours a day. Participants take self-portraits, which they gradually morph into images that are limited only by their

imagination. They learn to use technology such as Photoshop to accomplish this. To get an idea of what’s possible, go to www.imagineme.com.au No prior skills or experience is required and people with all levels of mobility are catered for. The course is also flexible time-wise, as Sue understands that not all people are in a position to attend every day. So don’t be put off from applying because you’re not sure if you can commit the time. If you would like more information or are interested in attending, contact Craig Lees on (02) 6372 1892, or Sue Murray on 0412 810 745 or imagineme@royalrehab.com.au

VICTORIA D ! < = 6E6 F ?

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As part of AQA Victoria’s rebranding of its Spinal Injury Resource and Support Network (Spire), we have a new website—jump online at www.spire.org.au if you haven’t already done so. Spire has emerged from what was previously the information and peer support department of AQA Victoria Ltd (AQA). The new website provides a platform for sharing information, resources, lived experiences, updates on community events and activities, and different perspectives on living with spinal cord injury. It’s also a place to generate debate on key social policy issues. We hope you like the website’s fresh new look and improved navigation, which allows you to find the information you need quickly and easily. Contact us via www.spire.org.au to let us know what you think of our new website—all comments and feedback are welcome.

TARTA Back Support A dynamic supportive exoskeleton Light, flexible and aesthetically pleasing Is composed of a real ‘skeleton’ similar to a rib cage, where, the vertebrae simulate a spinal cord Available in 4 different sizes: S-M-L-XL Available in 3 lengths 4, 5 and 6 vertebrae Available in 2 rib shapes: Standard and Contoured And ... FLEXIBLE mounting options

Contact: Healthcare Innovations Australia Pty Ltd, P 1300 499 282, sales@hiaus.net.au; www.hiaus.net.au accord magazine

Meanwhile, a word of warning about ‘watching the gap’. Recently, I caught the accessible tram between two of the accessible super stops in Melbourne’s CBD. As the tram doors opened at the stop at the top of the hill in Collins Street, I made sure my takeaway coffee was secure between my legs so I wouldn’t spill it. As I slowly went down the incline inside the tram, I noticed a gap between the tram and the platform. I thought to myself, ‘The gap doesn’t look that wide, and if I take it nice and easy my front wheels shouldn’t get caught.’ But they did. I was hanging on for dear life as my rear wheels became airborne and my wheelchair overbalanced forward onto its footplates. My coffee fell over and spilt on the platform. I thought I would soon follow my coffee but, luckily for me, someone behind me set my chair back on its rear wheels. I don’t want to scare off anyone from using Melbourne public transport because it’s pretty accessible and a great way to get around. I didn’t expect to be caught by the gap, so next time I’ll have to be a bit more careful. For more details, contact Nazim Erdem on (03) 9489 0777 or email nazimerdem@aqavic.org.au

SCIA is recruiting! WE NEED YOU! SCIA is looking to recruit a number of Community Fundraising Collectors to help raise money to fund our vital services.

• Flexible hours in a variety of metropolitan and regional areas • Training and uniform provided • Great commission (33% of money collected) " *E E @ / 3 3

To apply, email jobs@scia.org.au or call Jodie on 02 8347 3005

scia.org.au | 1800 819 775

POLICY AND ADVOCACY (

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believes there will be a substantial increase in the need for advocacy services due to the The push to expand the goods and services rollout of the National Disability Insurance tax (GST) exemption to a wider variety Scheme (NDIS)—as eligible people with of goods and services for people with disability will be accessing more services, disability has inched forward. including new service providers. However, not all people with disability will be eligible In early August, Spinal Cord Injuries for the NDIS and need advocacy services Australia (SCIA) received a muchas required. awaited response from the state and territory government GST Policy and Furthermore, SCIA believes it is Administration Subgroup (GPAS) to our inappropriate for people with disability to submission to expand the GST exemption. allocate any of their support funding for advocacy services. To do so, may place GPAS has agreed to review the type of people with disability in a situation where GST-free goods and services provided they may need to reduce or omit essential under the National Disability Insurance personal care and other supports. Scheme (NDIS) before June 2016. Part of the review will consider the issues raised in On a positive note, after the SCIA Policy SCIA’s submission: and Advocacy team completed its required evaluations and reports for the NDAP • Amend the tax laws so people with disability funding in August, its services underwent can obtain GST exemptions on a wider the mandatory annual independent audit range of goods and services (such as the in September. The services were found to UK’s Value Added Tax (VAT) exemption be compliant with all Federal Government for people with disability buying items requirements. This should give confidence manufactured for non-disability). to all people with disability, their family and • Simplify the current GST exemption carers who seek SCIA advocacy services. application process for people with High-tech delivery disability purchasing motor vehicles for employment. Delivering the best technology solutions to • Broaden the GST exemption eligibility criterion for motor vehicle use for employment to include general usage, especially for people living in rural and remote areas. Currently, the GST-free Supply (National Disability Insurance Scheme Supports) Determination 2013 specifies which goods and services attract the exemption.

The National Disability Insurance Agency (NDIA) is developing a new service delivery model for people with disability to access assistive technology solutions under the NDIS.

According to the NDIA discussion paper Towards Solutions for Assistive Technology, To read more about what is currently GST- the proposed model is based on three objectives: maximising participant choice free under the NDIS, visit: www.comlaw. and control; supporting innovation; and gov.au/Details/F2013L01325 ensuring sustainability.

Advocacy funding under a cloud Spinal Cord Injuries Australia (SCIA) is calling on the Federal Government to continue funding our advocacy service. SCIA and other non-government organisations’ advocacy services have always received block funding every three years from the Federal Government’s National Disability Advocacy Program (NDAP). However, SCIA has been informed that the Federal Government is providing this until 30 June 2016, at which time it will review the situation. SCIA

accord magazine

National Disability Insurance Scheme (NDIS) participants raises a number of questions.

Spinal Cord Injuries Australia (SCIA) wants people with disability to access the best and brightest technical solutions using a number of avenues. In its submission to the discussion paper, we ask the following questions: • Will participants be able to obtain assistive technology from overseas if it is assessed to meet the needs and goals of the NDIS participant—regardless of whether the assistive technology has ongoing technical support in Australia? • If not, will the NDIA provide incentives for Australian assistive technology

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NDIS participants must also have access to a complaints and appeals system. If participants want to make complaints about the NDIS administration/ coordination and/or goods and services provided by suppliers, they should have access to information about their rights and how to take the appropriate action.

VK E E 3 be able to obtain

3 # from overseas if it is assessed to meet their needs and goals?

companies to import, supply and provide ongoing support for such assistive technology? • Will participants ‘own’ the assistive technology or is there an obligation for any unneeded assistive technology to be returned to, or arranged to be collected by, the NDIA? For more information and to download the SCIA and other discussion paper submissions (when they are available) go to: www.ndis.gov.au/document/assistivetechnology-discussion-paper

Ensuring quality and safeguards Efforts are continuing to ensure the National Disability Insurance Scheme (NDIS) offers high-quality and safe services to people with disability across Australia. Spinal Cord Injuries Australia’s (SCIA) submission to the NDIS Quality and Safeguarding Framework spotlights a number of issues for consideration. In addition to those raised in the winter 2015 issue of Accord, SCIA has submitted the following: SCIA supports The National Disability Insurance Agency (NDIA) funding of the Assistive Technology Mentors Pilot Project, which is being implemented in collaboration with the Independent Living Centre NSW (ILC NSW) and the Independent Living Centre Tas (ILC Tas). The project is currently assisting NDIS participants in the Hunter Region of NSW and Tasmania. The mentors are people with disability, and apart from being able to share information about their personal and learned experience, they have been trained in the various types of assistive technology. As SCIA successfully provides a peer support service in which the Peer Support Officers not only have lived experience of disability but also knowledge of assistive technology, it is in an ideal position to work with the NDIA (and ILC NSW) if it considers expanding the mentors project. ‘Checklists’ for NDIS participants should be introduced and tailored to meet participants’ needs, such as for home modifications for bathrooms, kitchens, ramps and railings and so on. Checklists would keep track of what needs to be done, save time and NDIS funding and provide participants with peace of mind.

For more information and to download SCIA’s submissions, go to: www.engage.dss. gov.au/ndis-qsf

* L & The number of National Disability Insurance Scheme (NDIS) participants continues to grow in the trial sites across the country, according to the most recent NDIS quarterly report released in August 2015. The report shows that at 30 June 2015, 19,817 participants were eligible for the scheme, which is an increase of 3,168 participants since 31 March 2015. Also, 17,303 participants had an approved plan, which is an increase of 3,693 participants since 31 March 2015. For a copy of the report, visit: www.ndis. gov.au/sites/default/files/Report-on-thesustainability-of-the-scheme.pdf

Improving services In July the National Disability Insurance Agency (NDIA) released its second annual progress report. A brief summary of its content shows a new service charter has

www.scia.org.au

POLICY AND ADVOCACY been developed, which sets out the level of service that participants can expect to receive. More than 700 staff have now been employed within the agency, with more than 15 per cent identifying as having a disability. The agency is also looking at introducing longer National Disability Insurance Scheme (NDIS) plan approvals, where appropriate, to offer participants greater choice and control for longer duration. Currently, plans are approved for 12 months before a review is conducted, unless a participant asks for an earlier review.

• NSW Trustee and Guardian • Health Care Complaints Commission • Access to premises • Access to services • Accessible parking • EnableNSW • Healthcare providers • Service providers • Wheelchair/equipment maintenance

O# 3# 3 the agency needs to work more closely with mainstream health, 3# to ensure they are delivering EE E 3 An outcomes framework is also being developed to measure the benefits of the NDIS for participants across daily activities, relationships, home, health and wellbeing, lifelong learning, work and social, community and civic participation. There is also recognition that the agency needs to work more closely with mainstream health, education, justice and transport services to ensure they are delivering appropriate services for people with disability. The report is available for download from this link: www. ndis.gov.au/document/progress-report-2015

• Centrelink • Support with attending solicitors • Guardianship Tribunal • NSW Civil and Administrative Tribunal • Aged care • ADHC programs For more details, freecall 1800 819 775 and ask to speak with Michael Magro or email mmagro@scia.org.au.

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

Catalogue overhaul The National Disability Insurance Scheme (NDIS) catalogue has changed in response to an extensive redesign of the plan constructs based on participant and provider experiences in the trial sites. The changes enable greater flexibility in purchasing services. The catalogue redesign is also supported by a simpler and shorter price list, that makes it easier for providers to claim funds. For further details follow the link: www.ndis.gov.au/ providers/pricing-and-catalogue-changes-1-august-2015

Individual advocacy

Features: • Two spacious units, each have two large bedrooms • Ceiling hoist in each unit • Fully self-contained • Large open living area • Accessible kitchen, low level cupboards • Easy access bathroom

• Accommodation caters for up to 6 people • Weekly or daily rates available • Smoke free environment • Close to transport and Glenorchy Shopping Centre • 15 minutes (with vehicle) to Hobart • Undercover parking

Do you have problems gaining access to the goods and services you need? Spinal Cord Injuries Australia’s (SCIA) individual advocacy service helps people to resolve issues that affect them personally but may also involve other people, such as partners, family members, carers and service providers. The issues may include the following: • Housing NSW applications • Housing NSW maintenance of properties • One-to-one self-advocacy • Private and social accommodation • Lifetime Care N accord magazine

Phone: 03 6272 8816 paraquadtas.org.au

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

K ~ 3 3 =L " 3# _ We support people with spinal cord injury and other disabilities back suitable employment and long term support in the workplace.

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WORK

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t age 27, David Crawford was an avid soccer player, surfer, golfer and tennis player. He was in a happy long-term relationship, engaged to be married, and in the midst of a successful building career. Working on a roof at a Sydney building site, David questioned the way the roof was being designed but was told it would be fine—nothing to worry about. But those supposed worry-free times would soon become a thing of the past. “I was walking across the rafters when one of them suddenly gave way and I fell about 4m to the ground,� he recalls. “I was actually lucky not to have been killed, because I landed right beside a row of exposed tree stumps.�

David goes into workplaces and shares his personal story and experience of living with a disability. This gives a real-life, human face to the importance of workplace health and safety (WHS). “The most important message is this: If you are unsure it’s safe, stop and reassess,â€? David says. Thiess Services Pty Ltd has experienced the Teamsafe presentation firsthand. “The presentation ‌ was imparted simply and honestly, but powerfully enough to allow everyone to empathise with David’s experience,â€? says Tania Salijevic, Health Safety Environment and Quality Manager, Sydney Water OMFM, Thiess Services Pty Ltd.

“There was absolute silence and attention to his every word, and both men and women had tears in their eyes throughout his talk. The insight The fall damaged David’s C6/C7 vertebrae—he gained by listening to someone’s real-life story had to learn to live with quadriplegia and rely on about their experience with workplace injury a wheelchair for mobility. can’t be praised enough, and it answered the Since then David’s life has gone through a revolution ‘why’ of workplace safety warmly but factually.� and he now works as the Teamsafe Coordinator at The Teamsafe presentations cater to each Spinal Cord Injuries Australia (SCIA). organisation’s WHS focus and address ! accord magazine

WORK complacency and the need for change. David acknowledges that change isn’t always easy but he reinforces the fact that reluctance to do things differently can come with a big human price tag.

home or in the workplace, will have an impact directly or indirectly on the important people in our lives,� he says.

Board directors, all levels of management and workers are encouraged to participate in the Teamsafe presentations. This is particularly important, as the goal is to help employers meet their WHS obligations and ensure their workers get home safely each night. “We had our General Manager, Regional Manager, several Project Managers and our field staff of 40–50 [attend Putri Ferraro, Safety Manager at UGL Unipart Ltd, David’s talk],� says Suli. also has firsthand experience of the presentation’s The presentations last for 60 minutes and can influence on the organisation and the individual. be adapted to groups of all sizes and to meet “It put a lot of things into perspective and it organisational, site logistical and operational created conversations,� Putri says. requirements. They also include a Q&A session A key message imparted during the presentation where participants can ask any questions is that safety at work not only affects the they have about workplace safety or living individual but also their family, friends and with a disability. colleagues, Putri says, adding, “Safety starts with WHS is not about being lucky or unlucky— you. Report hazards and do something about it. it’s about management and workers taking Look out for each other.� preventative action. Suli Lotoaniu, an Environment, Health and Safety Officer who has welcomed David onto his worksite For more information on how Teamsafe can help your organisation, free call 1800 819 775, and attended his presentation, says targeting complacency was key for his organisation. “[You] email teamsafe@scia.org.au or visit www.scia.org.au/teamsafe ■can’t be complacent. Everything we do, either at The presentation at Thiess Services Pty Ltd has encouraged “people to speak out when they perceive a safety issue, which can prevent workplace injury�, says Tania. “Safety hazard reporting increased immediately in the following weeks.�

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TECHNOLOGY & "&

Environmental Control with Voice Feedback I need a basic environmental control 3 ;-7€= 3# 3 4 / . 3 3 . O^> V^V> .E X @ 4# K . / O# E / . K X 3# 3 3 X / X 3 . ‘K

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� Unfortunately there are not many options at the basic level. The cheapest one, the HouseMate Lite, is $990. It allows you to record audio prompts that play when each button is scanned—you press the switch when the command you want is played. Up to 20 commands can be recorded from your existing remotes; macros (a number of commands on a single button) can also be recorded. You will need some additional modules, such as Watts Easy-Off sockets for your lamp and fan. You will also need a switch and have it positioned properly for you, so some expert advice might be required. If you need more than 20 commands, you may need to step up to the HouseMate Pro, the big brother of the HouseMate Lite. It costs $1,890 plus the cost of an Android smartphone or tablet. But it has a host of extra features. It can record up to 250 infra-red commands. It gives you single-switch control of your mobile phone (if you’re using a large phone rather than a tablet), as well as built-in camera, music and clock. It can also be hardwired to an emergency call system. It has been a popular option with our clients.

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ons’ such as plug-in adapters, Bluetooth devices or devices on the same Wi-Fi network. Recently, an environmental control app for kids was released for the iPad. It’s called MI Remote and it works with a device called the iTach. That device is the one that does all the hard work, learning and transmitting the infra-red signals from your TV and any iPads (and nearly all Android devices) do other infra-red device in your home. not have infra-red capability (which you The MI Remote app talks to the iTach and uses it to make the changes indicated need to be able to learn and reproduce signals from devices such as televisions). on the iPad. The app is about $40 and That can be achieved, however, with ‘add- the iTach is about $200.

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� It’s true that you can’t change the size of the icons on an iPad, although of course some of the apps have larger icons. It might be better for your father to consider an Android tablet and an app called BIG Launcher, which replaces the user interface with large icons. You can also customise which apps are shown, to simplify usage for him.

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TECHNOLOGY

iPhone Access

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3� One option is to put the phone on a mount, high enough to be in your line of vision and close enough for you to reach. Even then you’d probably need a Bluetooth speaker/microphone closer to your face. That whole set-up would be awkward and could be vulnerable to damage (besides not looking that good). A better option would be a switchadapted Bluetooth speakerphone, such as the one available from Technical Solutions (www.tecsol.com.au) for $135.

It operates with a single switch: press the switch to answer an incoming call and press again to hang up; press the switch (when there’s no incoming call) to start your phone’s built-in voice control to call a contact.

www.scia.org.au &

TRAVEL

Fiji Islands White sandy beaches and warm tropical waters don’t tend to be wheelchair friendly but there are ways to enjoy desert 3 4 3# 3 / � # # * & ^ &

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Earlier in the year I was asked to go to Fiji to deliver some training on behalf of the charity Motivation Australia. This was a great opportunity for a family holiday, so I headed to the airport with my wife Penny and our two children for our first Pacific adventure. We flew out to Fiji and stayed at a small resort with accessible accommodation called First Landing. It is nestled among mature trees, coconut palms and lush shrubs.

Our first side trip was to Lautoka to visit the food market, so we could take advantage of our self-catering accommodation. When we arrived in the small city our travelling circus immediately turned heads. This was something I put down to my front wheel attachment, which makes my chair more of an offroader, essential in a city where the footpaths are very cracked and uneven. In hindsight, the wheel had little to do with the interest we attracted. As I discovered later in my trip, wheelchair users are not a common sight on the streets of Fiji.

The heat and humidity were obvious, as was the sense that this was the rainy season. On our first morning, we swam in the pool as huge drops of Having stopped for a lunch of Indian food, we headed for the market. There I edged my warm rain fell around us. This set the tone and way between the produce piled on the ground pace for the rest of the week. around the outskirts of the covered market, The accommodation was well appointed. There inching along trying to avoid leaving a river of was a strong pragmatic quality to the solutions pulped fruit in my wake. the resort had come up with in terms of access, such as the cast concrete shower seat that made However, the trip to the supermarket was a step too far, as the gradient on the ramp into the shop for a sturdy accessible shower. N accord magazine

TRAVEL was 1 in 2. I sat outside with my son on my lap. As we turned so many heads, I inadvertently said out loud, “Everyone’s staring at us�. This is not the kind of comment I like to make in front of my kids, especially the youngest. At three years old, his capacity for shyness is easily triggered, and I was worried that he would feel uncomfortable.

We had already scoped out the other boat that accompanied us that had a water level platform at the back, so I knew that I could get aboard. I then got to ride on the back step of the boat as it tore through the water. I held my ankles tightly for fear that one of my floppy legs might slip into the water and the wake would suck me into the ocean like a child eating spaghetti.

He clearly was, but his response was not that of a shrinking violet. Instead he shared his observations with the crowd. “That man’s staring at us! She’s staring at us! Those kids are staring,� etc. I soon became uncomfortable at the way he scrutinised other people so blatantly.

Desert islands are very picturesque places. However, they are not very wheelchair friendly. In fact, the combination of soft white sand, palm tree roots and briny water make them positively hostile to anything with greased, moving parts. Luckily, the staff were very capable, and happy to push me around the island and haul my sorry carcass out of the ocean after I had enjoyed another swim.

Our second outing was on a catamaran out to the minuscule island of Savala, a blob of sand with a shelter, kitchen and a few kayaks on it. To walk the coast of this land mass would take about 10 minutes. On the outward journey, we stopped above a small reef and everyone dropped into the ocean for a bit of snorkelling. This is something I enjoy very much, especially as it’s an activity I can share with my daughter. I threw myself enthusiastically into the water with everyone else. In case you are thinking that I ended up flailing around, unable to back onto the boat, fear not.

I edged my way between the produce piled on the ground ‌ inching along trying to avoid leaving a river of pulped fruit . 4 X

Our week was soon over, and I left Penny and the kids to enjoy a final day by the pool, while I met up with the rest of the team from Motivation Australia and we journeyed down to Suva for the business end of the trip. But that’s a tale for another day. For more on Tim’s view of the world, check out his book, Looking Up, published by Virgin Books. The book can also be borrowed from the SCIA Library. Tim also pens a blog, which you can visit at www.timrushby-smith/looking-up. â–

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Following the huge success of the SCIA Independence Expo at Australian Technology Park in 2014, we’ll be returning over two days on Friday 15th and Saturday 16th April 2016. Don’t miss your opportunity to be seen at people with physical disabilities. Register your organisation now to be part of this exciting event!!

EXH IBIT OR

Register your interest at www.scia.org.au/expo2016 expo@scia.org.au | www.scia.org.au | 1800 819 775

REVIEW

A step in the right

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Recently, I trialled the REX robotic legs (pictured left), an exoskeleton that is suitable for people of a certain height and weight with a complete spinal cord injury up to the C4-5 level. REX is basically a pair of robotic legs joined by a hip girdle that supports a user with mobility impairment in an upright position. It is self-balancing so there is no need for supporting devices such as crutches. # f ) & *)? $"

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It allows you to sit and stand, walk forwards or backwards, step to the left or right, and of course turn left or right. The version I trialled is intended for use in a controlled environment such as a rehabilitation centre or hospital under clinical supervision. However, there is a version called the REX P for use at work and home. The user transfers into REX while the device is in a seated position. You are then strapped in using a series of straps and a harness. It is operated by a joystick which is very similar to a control on a power wheelchair. Getting into the REX was a bit of a mission for me because a very decent lift was required to get over the leg of REX when it was in the seated position. Fortunately Mel Gregory, the physiotherapist at the Royal Talbot Rehabilitation Centre in Victoria, is very inventive and found a solution to get me across. She also gave me a boost by taking some weight off my bum. Once I was strapped in and given the instructions on how to operate the REX, fear started to set in. I was worried that I would pass out once I stood up because of my low blood pressure, which is an issue for those who have a spinal cord injury. But the excitement must have boosted my blood pressure because it wasn’t an issue at all.

Unlike sitting in a manual wheelchair, where you need to keep your weight forward so that you don’t tip out the back, the REX was the opposite. I had to keep my weight back and stand as straight as I could. This was unusual but a good feeling because it forced me to stretch my back out which I hadn’t done for years. As I pushed the joystick forward to start walking, the movement jolted me around a bit and I was fighting to keep my balance. This was only until I got used to the way it operated and felt comfortable. My personal view is that it’s not for everybody. It’s not a solution to walking by a long shot, but it’s a step in the right direction. It gives people hope. It’s great that this is one of the many areas that money is being put into for progress and research. The biggest benefit I got from it was that it completely stretched out my joints and muscles and reduced my spasms. This benefit lasted for nearly two weeks. More details on the REX can be found at www.rexbionics.com

Cool Yule Rob Wynn, Peer and Social Support Manager, Spinal Cord Injuries Australia

We rugged up and met nice and early for some lunch before heading down to Cool Yule in Darling Harbour, Sydney, on Saturday 11 July. The advertising hype of an ice rink with full accessibility was the main attraction. True to their word, there was an ice rink, but it soon became apparent that it wasn’t terribly accessible. Spinal Cord Injuries Australia (SCIA) Peer Support team was holding a Christmas in July for our members and people from the spinal units at Prince of Wales Hospital, Randwick, and Royal Rehab, Ryde.

As normal around Darling Harbour, the crowds tend to be large and this is always a challenge for newly injured people who may be on their first outing from the hospital. One of the aims of the SCIA Once standing, I couldn’t believe how tall social events is to try and break down the I was. I was probably the tallest person in social isolation barriers early and create the room. I was cautious about my balance independence, and if you can do it in and was worried I would fall forwards, not Darling Harbour you can do it anywhere. being able to hold myself up. The support With super keen ice skaters in tow we I had in the REX was good. The harness held me in tight and the backrest was nice headed down to the ice rink only to find a rather large step onto the ice and no ramp and high for me. www.scia.org.au N

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in sight. Although the staff were extremely apologetic and offered to refund our tickets, some of our members and clients had come a long way to participate. After a lot of discussion and persuasion, a ramp was finally located and we were able to skate with and without the crowds. Disability is invisible in the eyes of the achiever—though I’m not sure performing doughnuts on the ice went unnoticed. As always, the SCIA Peer Support team was able to do their job and turn a negative into a positive. It was such a turnaround that the smiles on our faces almost melted the ice. One of the clients was so impressed that they commented, “If this is what events can offer, when are we doing skydiving?â€? Umm—now there’s an idea. Joking aside, this is exactly the type of comment that drives us to do so much more for the clients. Would we do Cool Yule again? Absolutely. With the best of planning things don’t always go the way you wish, but with determination and patience you always find a way to make it work. To find out about SCIA’s next social events turn to page 48. â–

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MEMBER PROFILE

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hloe Berryman wants to swing at 120km/h, suspended high above a valley in Queenstown, New Zealand. The Nevis Swing is a cross between a bungee jump and a giant swing. After being suspended 160m above the valley floor, you are suddenly released and find yourself rushing towards the other side of the valley on a 120m rope, swinging in a 300m arc.

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Chloe sustained a spinal cord and head injury after a fall in 2007, but she hasn’t let that stop her making the most of her life. Her functioning has increased considerably since then—she can now stand with assistance and her memory has improved. But she is having a hard time convincing her doctor to give her the all clear to take on the Nevis Swing. The doctor thinks it might cause a brain bleed. While Chloe ponders the possibility of conquering her Nevis nemesis, she is videoing up quite a profile on YouTube as her alias, Clover Rose. Personal insights, Australia’s winter wonderland, stop bullying, transcontinental duets and conversations, plus many more clips, can be found at the Clover Rose YouTube channel. The channel gives Chloe a platform to dispel community ignorance about spinal cord injury and provides her with a creative outlet. It’s also starting to make some money from associated advertising—not big bucks, but enough to allow Chloe to upgrade to a GoPro camera. One of the videos’ stars is Chloe’s feline companion, Gizmo, who arrived in April 2013. He fills the hollow that she felt after her dad died in 2009. After her injury Chloe was told she would never live on her own and her movie-making would amount to nothing. But here she is, living in her own home and starting to make some money from her videos. You never know, the next time we tune into Clover Rose we might be joining Chloe on the Nevis Swing in Queenstown. Visit www.YouTube.com/CloverRose for the next adventures of Clover Rose. N! accord magazine

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REGISTER NOW

18-19 MAY 2016 MELBOURNE SHOWGROUNDS Epsom Road, Ascot Vale, Victoria

YOUR CHOICE, YOUR CONTROL Supporting inclusion and independence with Australia’s foremost exhibition of aids, equipment & allied services. On display will be the latest in aids, equipment and assistive technology, as well as options for mobility, services and lifestyles. The event is open to visitors of all ages, including those with a disability, seniors and their families, friends and carers.

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For more information phone 1300 789 845 or visit www.atsaindependentlivingexpo.com.au ATSA Independent Living Expo www.scia.org.au N'

EVENTS

Spring | Summer 2015 Social Events Each month at Spinal Cord Injuries Australia (SCIA) we get together with our clients and members to do something fun, social and active. Anyone with a spinal cord injury or similar disability, plus friends and family, are invited to join us. RSVP for any of the below events to Rob Wynn: rwynn@scia.org.au or Heidi Haydon: hhaydon@scia.org.au or phone 1800 819 775.

NOVEMBER € * 4 Œ$ Tenpin Bowling ' & + <x- * ' " #

Industry Events

NOVEMBER  Ž € * Œ €„ Spinal Cord Injury Awareness Week Œ * Œ €„

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Australian Spinal Cord Injury Network Perth Research Showcase, Perth

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NOVEMBER 7 November, 1pm - 3pm Billy Demos and BBQ * * & Saturday 21 November, 1pm - 3pm Lisa B K " 8

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Eileen McCann & Christmas BBQ * * & €„ Ž €‘ Œ €‘

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The Jesters program provided by Spinal Cord Injuries Australia (SCIA) gets inpatients in spinal units and their families and friends involved in activities to help relieve the boredom, anxiety and frustration that comes with spending weekends in hospital. Listen to live music and guest speakers plus more. Email Rob Wynn: rwynn@scia.org.au or phone 1800 819 775 for more details.

Œ„ Ž Œƒ * Œ €„ Australian & New Zealand Spinal = Œ €„

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DECEMBER

In-patient Social Events

We Are You.

Josh Anderson TiLite VP of Product & Brand Management WE USE THE CHAIRS WE BUILD. Listen to Josh and the TiLite team talk about why TiLite’s TiFit wheeled prosthetics are so critical.

HEAR OUR STORIES. TiLite.com/TiFitStories

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You’re invited to the premier Expo # $ $ $

15–16 April, 2016 | Australian Technology Park, Sydney Explore amazing products, equipment and technology on display. Be inspired by information packed workshops. Discover services to help you nd overcome barriers. There will be travel, sport and art - plus entertainment and fun activities for everyone. Entry is FREE and funding available for travel costss.^*

Register today at scia.org.au/expo or 1800 819 775

“„ ( * *For full terms and conditions visit scia.org.au/expo ^For more information visit scia.org.au/expo

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