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April 2015 | Volume 24 Issue 1 Taking control One woman’s battle with MS Get moving The latest on mobility equipment Mother guilt Explaining mental illness to kids Gill Hicks We talk to the London bomb survivor ten years on right staff? Ask us how we achieve success for t s e g ig B ’s a li a r t s u A rs e id v o r P e ic v r e S y Disabilit 1300 665 880 www.edmen.com.au inside Editorial Editor Rebecca Somerfield [email protected] Graphic designers Rachel Tortorella Contact us P 08 8201 3223 F 08 8201 3238 PO Box 2100, Adelaide SA 5001 Contributions welcome Cover story Advertising Advertising managers Michelle Stevens E [email protected] P 08 8201 7513 M 0419 822 717 10 Ian Smedman E [email protected] Subscriptions Gill Hicks on finding the strength to #bethebridge, why people with disability need respect and being a mum. Subscriptions manager Mandy Vercoe (08) 8201 3223 [email protected] General and News Deadlines Link is issued five times a year: April, June, August, October and December. All material needs to be sent to Link six weeks before each issue is released. Printing Graphic Print Group ISSN 1447–2023 2 Editor’s letter 3 Link Loves 4 Letters 5 Dignity for Disability MLC Copyright 2015. Please contact the editor for permission to reprint content from Link. The opinions expressed in Link do not necessarily reflect those of the editor, publishers or their agents. Kelly Vincent’s column 6 News 8 New Products and Services 14 Meet former Disability www.inprint.com.au Link Magazine is designed and published at Inprint Design (abn 40 005 498 775), a non-profit organisation. Discrimination Commissioner Graeme Innes It is produced without the assistance of government funding, relying only on sponsorship, advertising and subscriptions to continue its development. 16 Michelle Vasiliu on mental illness and parental guilt 18 CD formats available Link is distributed via subscription or www.linkonline.com.au Mobility equipment feature Supporter Our Commitment to Environmental Management Graphic Print Group are FSC®, PEFC™ and SGP Level 2 certified which embraces our company’s commitment to the environment and green printing. Outstanding quality printers for all your business needs. 34 37 38 42 43 Keeping it under control with Jillian Kingsford Smith Meet a carer with a big heart Travel with Marayke Jonkers Music with Anthea Skinner Woodcutting champ Nick Fredriksen 44 Dr Sachi Purcal on the NDIS 46 Books 50 Peter Coulter 51 Breakthroughs 52 Social Scene Link subscribers can now read Link online. Ring Mandy Vercoe on (08) 8201 3223 for details. www.linkonline.com.au 3()& ĞƌƚŶŽ͘>ϮͬϬϬϮϯ͘ϮϬϭϭ ic g Credentials • Chiropractor at Total in private Lifestyle states in Australia, 2004 practice Australia Certified Specialisati • Sports on • Sports injuries and • Natural rehabilitationrecovery and performance • Infant birth and home • Anxietyand child wellness birth • Arthritis disorders • Nutrition • Motor vehicle US and Oregon injuries Theatre ” Printer Friendly Environmentally Ballet Tennis “ Your oFFicial Community Dr. Ebeling Involvemen the followinghas served t • Glenelg sports as chiropractor Lacrosse groups: • Nike for Corporation Club • Oregon Marathoners, • Portland Fit for Life Marathon Oregon • Oregon area triathlons Trainers • Carson Hood to Coast • Boise, City, Nevada 128km run Karate • OregonIdaho Centennial Club Glenelg Total program 9 Brighton Lifestyle Telephone:Road, Glenelg, Chiropracti South c Email: (08) 8294 Australia Pty Ltd 3606 5045, Glenelg@TLCA Hours Australia Monday, ustralia.com Tuesday: Wednesday, Friday: Thursday: 2-6pm 8am-6pm Saturday: 8-noon 2014 Designed 8-noon 8011 500 aDElaiDE arriVes 8443 clipsal VolVo in in Argentina, • Certified(Oregon and New Zealand, Idaho) 2005 X-Ray and in • Foot License two Leveler Orthotics in South Dr. Ebeling, specialises husband a five-year in family and father of two, tenure care and United sports. in 2005, States, Dr. as a chiropractor After and has Ebeling practiced arrived in the in Australia As a life-long in Glenelg has acquired competitive since. the human an athlete, in full, physical body’s depth comprehensio Dr. Ebeling challenges he has potential. n the besta compassiona As a in achieving of family newbornscare possible te drive man, to great to all to provide patients, grandparents He is from committed . to the of our wellbeing local community, and to patientshelp his achieve the comfort health and deserve.that we all Chiropractic – T 08 your all guide to the racing action & attractions SA since and Boise, 2005 • Chiropractor Glenelg, • ChiropractorIdaho, practice USA from in • Licensed in private 2000 Portland, Oregon to masters muscle utes & Beaut Group excitin All new t! FormA Print program Ryan Ebeling, Doctor of Chiropract 1 2 march by Graphic oFFicial 27 28 FEb and printed .au clipsal500.com 2014 Ever 9 Brighton April 2015 — Vol 24/1 2014 er Calendar Weath SOUTH Australian Broadcasting octane & high eVery day Bands $10 (INC. Road, y Bo d Glenelg y Ne e SA 5045 ds T LC –Tel.: (08) 8294 3606 GST) Corporation News LIA AUSTRA For all your Limited Edition Prints, Brochures & Catalogues, Booklets & Flyers, Books, Magazines, Calendars, Postcards, Stationery, Self-adhesive Stickers, Packaging, Posters & Point of Sale… CALL 8443 8011 www.graphicprint.com.au “ YO U R E N V I R O N M E N TA L LY F R I E N D LY P R I N T E R ” linkmagazine 01 Link: From the editor From the editor ‘One unknown, estimated female’ is how emergency service workers labelled London bomb survivor Gill Hicks when she was being rescued from a train carriage in King’s Cross Station. The actions of those people, who risked their lives to save others, left an indelible mark on Gill and led her to dedicate her ‘life 2’ to the promotion of peace and tolerance. Her story (page ten) is also a reminder of how life can change in an instant, as does our interview with writer Jillian Kingsford Smith on page 30. Diagnosed with Multiple Sclerosis in 2012 and now an author of two books on dealing with MS, Jillian’s story reminds us that our health should be our number one priority. Also in this edition, music writer Anthea Skinner introduces us to a girl group with a difference, while guest contributor Michelle Vasiliu discusses the parental guilt she experienced after being hospitalised for mental illness. We also take a look at the latest in mobility equipment, including a remarkable wheelchair that can climb a step, and check out the accessible travel scene in Brisbane. Happy reading. Rebecca Link editor Contributors Marayke Jonkers (River city shines, p38) is a travel journalist, Paralympic medal-winning swimmer, motivational speaker and founder of Sporting Dreams – a grant program. She’s passionate about encouraging people with disability to explore new places and experience the personal growth and self-confidence that travel brings. When she’s not jet-setting the globe, Marayke can be found at home on the Sunshine Coast walking her assistance dog Lacey. 02 linkonline.com.au Carole Lander (It’s up to us, p14) is a freelance writer and editor. While interviewing subjects for her book Little People Big Lives, which profiles short-statured people, she became interested in the topic of disability. Now she writes on the subject for a variety of publications and is pitching her three children's books, which celebrate living with a physical difference, to publishers. April 2015 — Vol 24/1 LINK Lo es... Coffee club Sydneysiders looking for a coffee fix or sweet treat should head for Mr Espresso by Windgap at Matraville. Run by New South Wales disability support provider Windgap, in partnership with private firm Mr Espresso, the café is operated by Windgap Foundation Transition to Work clients who have been professionally trained in barista skills at their DSK hospitality and learning centre. Community liaison manager Zeynep Yapar said staff members were fully qualified baristas, and had been trained in food handling and health and safety. "One customer told us receiving a coffee from our baristas was the most fabulous part of their day,” said Zeynep. “Other regular customers tell us how much they enjoy the coffee - they get to interact with the baristas and establish personal connections.” Windgap chief executive Serhat Oguz said the initiative was in line with their transition to work strategy. Employers – if you are looking for good, reliable staff… Jobseekers – if you have a disability and are looking for work… Contact our friendly staff at Community Bridging Services (CBS) Inc. We offer a free service and have a range of incentives available to help you meet your staffing needs or reach your employment goals. "This exciting new partnership with Mr Espresso means we now have a permanent social enterprise to ensure the full development of our team members is achieved,'' he said. The café is open 7am-3pm on weekdays and 6am-12pm on Saturdays. It’s located at 522 Bunnerong Road, Matraville. www.windgap.org.au Share your views and read about all things disabilityrelated at facebook.com/linkdisabilitymagazine. April 2015 — Vol 24/1 linkmagazine 03 Letters to Link Letter of the issue: Meeting the Challenge By Astariah By the age of four, my son had endured numerous operations, months in hospital and years in splints and plasters. He was born with six congenital anomalies affecting his large intestine, brain, legs and feet. Miraculously, his brain anomaly did not inhibit his cognitive development. But weak stomach muscles, resulting from multiple bowel operations and damaged muscles and nerves in his left leg, left him disadvantaged in the world of play. And at four-year-old kinder, play IS the world. Whilst other children were running, skipping, jumping and tumbling over each other, my son was eager to participate but sadly restricted. At playgroup and kinder it was essential he was monitored at all times; a hard push or nasty fall were potentially life threatening and had resulted in hospital admissions. During the kinder year, another mum approached me, about my son’s enthusiasm for sporting activities. She worked part-time as a personal trainer and thought that he might benefit from a training program. Soon after I looked up the Yellow Pages and sent an email to my first choice trainer. Adam was perfect. He was smart, sensitive, university educated, experienced and had a strong interest in physical rehabilitation. Understanding that my son’s love of sport was excellent motivation, he modified an exercise program, based on cross-training principles, for my son’s current level of fitness. After the first session, we took home a simple program to practice. A month later we returned to have his progress checked and his program revised. Adam was enthusiastic about his improvements and adapted the program accordingly. We practiced at home for another four weeks. As Teal’s primary goal was to run, Adam had focused on providing him with core and leg strengthening exercises. Nine weeks and three sessions later my son could sit up from lying prone for the first time in his life. Well satisfied with the results we had a break from training sessions; keeping up with Milo Cricket, Auskick Footy and exercise in the backyard or playground. In August the following year (nine months after our first session) we returned to Adam for weekly training sessions for three months. As my son had been so dependent on his father and I to give him support with his special needs, Adam addressed the need for my son to trust in him as his Primary Support Person, during training sessions. The improvement in his confidence, coordination and strength was so worth the cost of travelling and attending the Send your letter to the editor: Link Editor, Inprint Design, 1B Laffer Drive, Bedford Park SA 5042 or email it to [email protected] Please include your postal address (not for publication). Letters should be a maximum of 200 words and may be edited for brevity and clarity. The best letter wins $50 04 linkonline.com.au Teal's collage shows a positive self-image. sessions. By the end of three months he was doing single leg squats upon his left leg, in spite of the severe muscle and nerve damage, suffered in the womb. Last year my son (now grade 4) competed in the inter-school crosscountry running challenge and participated in multi-sports, little league soccer and swimming lessons. The short-term investment in sports training has paid long-term dividends. Last year, my son was asked to collage his perception of himself. It shows that positive self-image and a healthy body image can be developed within children, even those challenged by physical disabilities. With acceptance from their family, friends and peers and participation in activities that encourage their imagination and development in positive ways, these children can thrive. By contributing a letter you authorise Link to publish it in the magazine or www.linkonline.com.au. Letters may be edited for length and clarity. All published contributions earn the author a free copy of the magazine, containing the letter (or current subscribers may specify that they would prefer their free magazine as an extension of their current subscription), provided a postal address is included with the original letter. Your name, suburb and state will be published with your letter unless you specify otherwise. April 2015 — Vol 24/1 Link: Opinion Inclusion essential in emergency management it comes to emergency management. When planning communication with the community during events such as fires, it is essential to consider the needs of everyone. While most people in my generation are confident using and checking in on a variety of social media, the elderly may not plug in as regularly as our screen-savvy youth. Radio and television broadcasts may be more effective communication methods. Communication systems that cater to everyone in our community are vital during times of crisis, writes Dignity for Disability MLC Kelly Vincent. Following the recent bushfires in the Adelaide Hills, I held a public meeting to talk about how emergency services and information about emergency situations could be made more accessible for Deaf and disabled people. The discussion has been ongoing and broad ranging. People with disabilities and elderly people can be particularly disadvantaged when April 2015 — Vol 24/1 If you have a physical disability, it’s important that emergency services know that you may need assistance to leave your home. People may also have equipment, medications or assistance animals they must take with them once they evacuate. I’ve also heard that people with intellectual disability may require extra assistance understanding the significance of emergency situations, and early warning and explanation about possible scenarios. The use of the Easy or plain English and visual communication methods may be needed. If needs are pre-recorded and passed onto emergency services, the safest options and supports can be considered, well ahead of time. Waiting until the emergency is upon is too late to start considering what scenarios might emerge – everyone needs to be prepared – whether you’re young, old, have a disability or not. Equally, the Deaf and hard of hearing people need high quality captions and Auslan (Australian Sign Language) interpretation in all emergency TV broadcasts. As it doesn’t always happen at present, I am going to move amendments to the (South Australian) Emergency Management Act to ensure that experienced Auslan interpreters are included. It must be included in planning for these events so that when transmissions are organised, it’s not only emergency services personnel and government ministers who are on standby. It’s also essential that Auslan interpreters are upskilled so they have a genuine understanding of the terminology used in emergency services too – so there is nothing lost in translation. At the end of the day it’s about designing systems, programs and communications during emergencies that include everyone in our community. I am grateful to everyone who has contributed to this project so far and welcome ideas and feedback. Let’s work together to ensure that everyone enjoys the right to safety. linkmagazine 05 Link: News Abuse inquiry underway Following substantial lobbying by disability advocacy groups, the Federal Government announced a national Senate inquiry into disability abuse in February. Submissions are being accepted until April 10, with a report into the issue due on June 24, 2015. According to the terms of reference, the inquiry will examine “violence, abuse and neglect against people with disability in institutional and residential settings, including the gender and age related dimensions, and the particular situation of Aboriginal and Torres Strait Islander people with disability, and culturally and linguistically diverse people with disability”. Speaking after the inquiry was announced, Assistant Minister for Social Services, Senator Mitch Fifield, said the Committee’s report would be a valuable input into the establishment of a new national quality and safeguards framework for the NDIS. “Some people with disability are more vulnerable to abuse, so we need a strong system to keep them safe,” Senator Fifield said. Shadow Minister for Disability Reform Jenny Macklin said a Senate inquiry was an important step in the pathway to healing for people with disability who have suffered abuse. “We must also ensure that proper safeguards are in place to ensure that people with disability - wherever they may reside – are safe and supported and free from fear,” Ms Macklin said. Australian Greens spokesperson on disabilities, Senator Rachel Siewert, who moved the motion to conduct the inquiry, said it was “an important step towards shining a light on an issue that has gone unacknowledged for too long”. Kelly Vincent MLC, from South Australia’s Dignity for Disability party, also welcomed the inquiry, commenting: “It's essential that failings of the system are righted, and any abusive perpetrators are removed, particularly as we move to nationwide roll-out of the National Disability Insurance Scheme." For more information on the inquiry go to www.aph.gov.au/Parliamentary_ Business/Committees/Senate/ Community_Affairs/Violence_abuse_ neglect. International autism conference for Queensland World-acclaimed autism researchers will meet in Brisbane from September 9 to 11, 2015, for the fourth Asia Pacific Autism Conference (APAC15) to explore the approaching revolution in how autism is understood. The conference program is designed for researchers, practitioners, teachers and educators, allied health professionals, support organisations, advocates, parents, families and carers, and policy makers. Jointly hosted by Autism Queensland and the Australian Advisory Board on Autism Spectrum Disorders, APAC15’s theme of ‘Transforming Futures’ will present the latest research and evidence-based practices for autism services, treatments, interventions and education. Keynote speakers confirmed to date include UK developmental cognitive scientist Dr Liz Pellicano, US child/adolescent psychiatrist Dr Joseph Piven, Belgian autism lecturer, consultant and author Dr Peter Vermeulen, clinical psychologist Dr Iliana Magiati from Singapore, Social Thinking creator Michelle Garcia Winner from the US, and academic and parent Dr Yuan Gao from China. APAC15 Committee Chair Penny Beeston said Australian research will be a major focus for the conference. www.apac15.org.au Videos promote understanding of complex issues A series of video clips to help people better understand advocacy and legal services available in relation to guardianship have been released by Carers Queensland, in conjunction with state government authorities. 06 linkonline.com.au Chief executive of Carers Queensland Ms Debra Cottrell said the short, easyto-understand videos, which feature animated characters, describe several complex legal guardianship issues which are sometimes confusing. “It was important for us to make guardianship issues as uncomplicated as possible and help people maximise their experience with legal and advocate services,” Ms Cottrell said. The videos are available on YouTube or visit www.carersqld.asn.au April 2015 — Vol 24/1 Swimming success for Aliesha Swimmer Aliesha Sneesby racked up a staggering nine medals at the 7th Down Syndrome World Swimming Championships held in Mexico last November. The 18-year-old from Queensland now has her sights set on Italy 2016, as well as a number of local competitions. “Our goal is to keep her in the pool and in the World Championships,” Aleisha’s mum, Carol, said. Carol sat on the sidelines in Mexico as her daughter stood on the podium while the Australian National anthem was sung. “It was mind blowing – I was so proud because they were singing it for my daughter. She came first against the entire world,” she said. Aliesha was supported by Horizon Foundation’s Axiom ‘Your Life Your Choice’ service, a self-directed funding program that enables people with disability and their family to have control over their support and services. Horizon Foundation manager Kylee Honeyman said she “felt honoured to be a part of Aliesha’s journey and proud of her exceptional athletic accomplishments”. Carol said the funding supported Aliesha to both prepare for and go to the Games. “Axiom YLYC helped me gain the funding and told me how I could use (the money) in ways for Aliesha to become part of her community,” she said. “Aliesha trained 2.5-hours a day, six days a week in the swimming pool and undertook two personal training sessions at the gym each week. I also used the money for domestic support and respite in order to provide care for Aliesha’s physical development journey.” Aliesha (centre) with mum Carol and Horizon Foundation manager Kylee Honeyman. Carol has self-managed her funding for more than a year and said it empowered her family. “I have found it very easy to use,” she said. She advised others in Queensland to embrace self-managed funding in preparation of the NDIS, set to be rolled out in the sunshine state in 2016. Novita opens new kids’ therapy centre Adelaide-based Novita Children’s Services has opened a Children’s Therapy Centre in direct response to a 150 per cent increase in demand for its paediatric allied health services over the past year. Novita chief executive Glenn Rappensberg said the extraordinary growth in demand was in part due to the introduction of the National Disability Insurance Scheme (NDIS). “Under the NDIS, we are now able to assist children with all developmental disabilities, including developmental delay, Down Syndrome and Autism Spectrum Disorder. This is in addition to the children with a physical disability or an acquired brain injury that we have traditionally supported,” said Mr Rappensberg. The Children’s Therapy Centre will offer five individual consulting suites, two multi-purpose group therapy rooms, an expanded waiting area and a gait and mobility assessment facility. April 2015 — Vol 24/1 Novita client Xavier pictured with mum Monika and therapist Emily, with Governor of SA, Hieu Van Le AO. “We can now conduct 50 individual consultations per day, and as many as 20 group consultations per day,” said Mr Rappensberg. “Research tells us that allied health intervention for children maximises the opportunities for them to discover their abilities and reach their full potential.” The facility was opened by the Governor of South Australia and Novita Patron, His Excellency the Honourable Hieu Van Le AO, who also interred a time capsule to commemorate Novita’s 75th anniversary. linkmagazine 07 Link: Products Products & Services Satisfaction guaranteed Stability meets style The Cobra Libre 2 is an auto-masturbating device from In the Mood that’s easy for men to use on their own. It’s easier than manual sleeves to hold in position as it stimulates the most sensitive parts of the penis without the need for ‘up and down’ movements. The Cobra has simple on/off controls, 11 vibration patterns, is fully rechargeable and 100% waterproof. As with all bodysafe, silicone aids, the user must remember to use a waterbased lubricant. In the Mood specialises in easy-to-use adult lifestyle accessories for men and women, and guarantee discreet shipping. They’re also offering Link readers 15% off products ordered online between now and June 30, 2015. Simply type ‘LINK’ as the coupon code at the check-out. www.inthemood.com.au The new Action 4NG wheelchair by Invacare is a stylish, foldable chair that is packed with features. Several versions are available including the Standard (selfpropelling) and Heavy Duty models, upgraded to a user weight of 160 kilograms. There’s also a Transit version (with attendant), a ‘Hemi’, ‘OAD’ (one-arm drive) and a DHR (double hand-rim) model. And due to platform-sharing with the Action 2NG and Action 3NG, the functional needs of users and carers are easily covered for optimal everyday use. The new range also has a priority on safety, such as increased stability on the Action 4NG complete with double crossbar and a rear frame design giving the extra stability of backrest canes. www.invacare. com.au/Actionfamily Ring, ring The Telecommunications Universal Service Management Agency (TUSMA) and the National Relay Service (NRS) have launched a free app to help people who have a hearing or speech impairment to make phone calls. The app provides users with access to a number of NRS call options, including internet relay, Speak and Listen, captioned relay and video relay. Both internet relay and Speak and Listen include additional features that are only available through the app, such as creating customised phrases for regular use and utilising the device’s GPS in providing location information. Deb Fullwood, from NRS Outreach, said the app was an important development. “People who have a hearing or speech impairment are now just as mobile in communicating and making phone calls as everyone else – all they need is their smart phone,” she said. The world-first app is available on iTunes and Google Play. www. relayservice.gov.au 08 linkonline.com.au Easy does it Ezy-Ups is designed to assist anyone with mobility and flexibility issues. Australian inventor Bill Carbray came up with the idea when he noticed that his 93-yearold mother had issues dressing and undressing. Bill saw that it was having a negative effect on his mother’s enjoyment of life, and that she was becoming hesitant to socialise or do activities away from home. Ezy-Ups allow users to undress and dress themselves without assistance, providing increased privacy, independence and dignity. It consists of two lightweight arm extensions which have strategically placed Velcro pads to grip clothing and incontinence pads. It can be used with elastic-waisted underpants (disposable and standard), skirts, tracksuits and trousers. www.ezyups.com April 2015 — Vol 24/1 April 2015 — Vol 24/1 linkmagazine 09 Link: Interview It’s nearly ten years since Gill Hicks’ life changed forever. The London-based design curator was on a train at King's Cross Station on July 7, 2005, when four suicide bombers detonated their devices in locations across the city. Gill was one of 700 people injured in the attacks, which tragically took the lives of 52 people. She lost both her legs from below the knee and suffered severe and permanent injuries - but, against the odds, she survived. 10 linkonline.com.au April 2015 — Vol 24/1 JUST ONE Person Now based in her home town of Adelaide, Gill is a passionate advocate for peace and founder of MadforPeace - a not-for-profit organisation that works to connect people globally and end violent extremism. Named South Australian of the Year in 2014 and the recipient of an MBE for her charity work, she recently launched a new initiative, #BeTheBridge, which aims to eradicate ignorance and intolerance. In 2015 she’s planning a series of amazing physical challenges - everything from cage diving with sharks to abseiling a building - to commemorate the tenth anniversary of the London bombings and to show violent extremists that confidence is more powerful than fear. Link talked to Gill about encouraging tolerance, managing her disability and being a mum. Over the past few months we’ve seen several unfortunate incidents linked to extremism. How do you feel when you see tragedies like these play out and how do we prevent them leading to a more divisive society? Every time there is an act of terrorism, be it a suicide bomber in Pakistan or a lone gunman in Australia, I still feel the same amount of sickness and pain. It’s ten years (this year) since the bombing incident in London where I was fortunate to survive – I guess after a decade I was expecting the susceptibility to destructive April 2015 — Vol 24/1 ideologies would have diminished – but it is quite the opposite! There are a lot of people doing so much to eradicate violent extremism from our global lives, so I have to remain optimistic that we will all know a sense of true peace one day. To my rescuers it didn’t matter who I was - the colour of my skin, if I had a faith or no faith - nothing mattered other than I was a precious human life. Tell us about the #BeTheBridge project. This is an initiative built on the belief that just one person can make a significant difference. Often all it takes for any divide to be bridged is for just one person to reach out. No matter our cultural or religious - or non-religious backgrounds, whatever our difference may be, #BeTheBridge is encouraging us all to find the strength and confidence to endeavour to understand more about ‘the other’. Being the Bridge is about being an advocate for the eradication of ignorance and intolerance. It is about promoting the spaces and platforms that support learning, greater understanding and, ultimately, unity. Being The Bridge is about making a choice, a positive choice to co-create our communities and societies into environments which are safe, confident and thriving places. You recently ran for a seat in the City of Unley local government election in South Australia. Are we likely to see Gill Hicks on the political stage in the future? I have joined the Committee for Adelaide as an alternative to Council – my ambition is to ensure that I am making a difference to the lives of the people in my community. Being a mum of a two-yearold (Amelie) has made me prioritise my time differently, so any political ideas will have to go into the ‘whatever may be in the future, will be’ pot. All that matters to me is that I find the right vessels in which to make the greatest positive difference. What’s the idea behind your #Power10? I wanted to commemorate the ten years since the London Bombings in a way that showed strength, courage and the triumph of confidence over fear. It is both a clear message to those who hold a violent extremist view, that the spirit of humanity will never be broken, as well as being a public message – that we human beings are capable of achieving things – we just have to believe. I will be doing a variety of physical challenges from a bungee jump with a twist to tap dancing! linkmagazine 11 Link: Interview Regarding the events of July 2005, you’ve spoken a lot about the amazing efforts of the emergency services personnel and medicos who saved your life. What influence do these people have on the way you live your life now? Their actions have shaped the core of everything I am and do in my ‘life 2’. They risked their lives in coming to save mine and others, not knowing who we were – the brilliance of humanity was shown to me in their actions. I was labeled only as ‘One unknown, estimated female’. To my rescuers it didn’t matter who I was, the colour of my skin, if I had a faith or no faith at all – nothing mattered other than I was a precious human life. Your recounting of the time immediately after the bomb went off and your thought process at the time (as discussed in your ABC Richard Fidler interview) is fascinating. You say you chose the ‘angry voice of life’ whilst lying in the train carriage - how hard was this decision? Was there ever a time when you regretted it? I have never regretted being alive – it is the greatest gift I could be given. My only pressure is that I honour that second chance as brilliantly and best I can. I was very intimidated by the anger of the voice of life – in some ways I was too scared to disobey it! You often talk of the seemingly trivial chain of events that led to you being in King's Cross Station on that particular train and carriage at that time. Are you a believer in fate? A BIG and complex subject – I guess I must say that when I met with some of the bereaved families, especially those who had small children, any idea I had of fate completely changed. How can it ever be that children should lose their parent in such horrific circumstances? How did you cope emotionally during your treatment and rehabilitation? Rehab still continues – it is a lifelong commitment – as is learning to adjust, adapt and accept such monumental change to my life, not just physically but also spiritually and mentally. I was blessed with an amazing team of people who showed me how to live again, how to walk, to ‘be’ in the world. I am proud to say that ten years on, many of these people are now counted as friends. What sort of rehabilitation treatment do you currently undergo and how do you manage your disability on a day-to-day basis? I am at the gym, with an amazing personal trainer, two days a week. This amount of physical dedication helps me in my day-to-day life, particularly being the mum of a busy toddler. I manage my disability by managing my expectations of change. No two days are the same for me – one day I may be fine to walk for long periods of time, the next day I may have too much stump pain and, therefore, need to ease up on my physical activity. It’s very hard to plan long-term events. What do you think are the main challenges facing people with disability in Australia? The main challenges facing ALL people with a disability is having respect, understanding and appropriate help – both from the government and the general public. For many disabled people, like myself, it is a lifelong journey – not a short-term infliction. Anything which can make our lives that little more dignified and easier, the better. I am a great advocate for Universal Design, looking at how both people with disability, the elderly and young can benefit from ‘joined up’ thinking when city planning and designing services. Finally, how is life as a mum? Being a mum is almost indescribable. I have never understood so wonderfully what absolute unconditional love is all about – how in a heartbeat, I would give my life, my all, for this precious little person. She motivates me, teaches me, grounds me and uplifts me. She comes to everything with me, her first plane trip was when she was just eight weeks old, and now she can’t wait to go ‘up, up’. Register at Link Online to receive the weekly e-news, that will give you a snapshot of disability news, stories and events from Australia and around the world, straight to your email. linkonline.com.au/sign-up 12 linkonline.com.au Join 8500+ others and LIKE us on facebook facebook.com/linkdisabilitymagazine CRICOS No. 00114A Are you getting LINK e-news? April 2015 — Vol 24/1 7341 inspiring achievement Flinders University’s Disability and Community Inclusion courses teach you how to facilitate, advocate and support people living with disabilities and their families. We offer a Bachelor of Disability and Developmental Education and a Graduate Certificate and Master of Disability Studies all of which are available for on-campus and external study plus an on-campus PhD in Disability Studies. Ask us about: • Pathways for people with Cert IV and Diplomas • What RPL may be available for previous study • Mid-year entry • External on-line learning For more information contact: Disability and Community Inclusion flinders.edu.au/sohs/sites/disability-studies 08 8201 3745 [email protected] Developmental Educators Australia Inc: deai.com.au flinders.edu.au CRICOS No. 00114A Our graduates play an important role assisting people living with disabilities to participate in society. They are in high demand as Developmental Educators and disability professionals across Australia and internationally. Apply for a course in Disability and Community Inclusion at Flinders and make an important difference in people’s lives. Make a difference with Disability and Community Inclusion at Flinders April 2015 — Vol 24/1 7341 linkmagazine 13 Link: Issues It’s up to us Former Disability Discrimination Commissioner Graeme Innes wants us to challenge discrimination, discovers Carole Lander. Last year the disability sector was dealt a blow when the Commonwealth Government disbanded the position of Disability Discrimination Commissioner. Graeme Innes held this position from 2005 to 2014, and prior to that was Human Rights Commissioner (2005–2009) and Race Discrimination Commissioner (2009–2011). Since losing his post, Innes has established himself as a private advocate for human rights for people with disability. His blog – Howzat (www.graemeinnes.com) – bristles with anecdotes, speeches and encouragements to keep discrimination issues in the public eye. Graeme’s sense of humour also shines through, and he reveals a lot of himself in the blog posts. Graeme is also chair of the Attitudes Foundation (www.attitude.org.au) – established to tell stories about Australians with disability using video. Attitude partnered with Attitude Pictures Australia to develop a documentary series that has screened on ABC television. However, he regrets the ABC’s closing of the RampUp portal, which was edited by Stella Young who sadly passed away last December. “It was a disappointing reduction in support,” says Innes, who spoke at Stella’s public memorial service. “The Commonwealth Government provided seed funding for this initiative for three years on the basis that the ABC would take it over. They didn’t and they say it is because of significant budget cuts. There is some truth in that but others would say that the ABC should have maintained that portal.” Graeme has also been a vocal advocate for an inquiry into the abuse of people with disability, announced by the Federal 14 linkonline.com.au Government in February this year. “The events outlined in the Four Corners program are just the tip of the iceberg, as complaints under the new NSW disability legislation demonstrate,” he says. “When the NDIS fully rolls out this will be a national issue, and should be dealt with on the national stage.” On the positive side, Innes is confident that the National Disability Insurance Scheme is rolling out successfully. “There have been criticisms; as there always are with significant change,” he says. “The more conservative service organisations are raising issues because they are not keen to move to a new way of delivering services. The media tend to write only negative stories. But the positive news is that it is operating under budget and hugely popular with recipients. A survey of people receiving support shows that 99% of them are happy with the process. For a young scheme that is a very positive result.” Born with vision impairment, Graeme has been campaigning for people with disability since he was three. He started by fundraising for what was then the Royal Blind Society (now Vision Australia) and spun the chocolate wheel with Sir Robert Helpmann at a fundraiser for the Victor Maxwell Kindergarten. At 14, Innes realised that the best way to change the law and help disadvantaged people was to become a lawyer himself. After leaving school in the late 1970s, he went to Sydney University Law School, which was housed in one building making it easy for him to find his way around. His text books were recorded on reel-to-reel tape by volunteers at the Royal Brail Society and in lectures he would whisper into his recorder, later transcribing the notes at home. When he graduated (not spectacularly but well enough considering the challenges he had to overcome) Innes had 30 job interviews and 30 rejections in the first I encourage all of you, artistically or legally, to challenge the discrimination that you experience. year. He decided to take the New South Wales public service examination and was offered a job as a clerical assistant, later getting a break when the Consumer Affairs Department took him on as a lawyer. “The discrimination I faced in that 12 months looking for a job probably fired my zeal for advocacy,” he says. Graeme has a clear message for people living with disability: “(Attorney-General) Senator Brandis’s actions – taking away our Commissioner – have meant that our destiny is firmly in our hands. So I encourage all of you, artistically or legally, to challenge the discrimination that you experience. Don’t think that one individual action can’t make a difference – because the reality is that it is only the action of individuals that does make a difference. Your challenge to discrimination will affirm your view of the damage that it did to you, and make a better and more inclusive society for us all.” April 2015 — Vol 24/1 Link: Advertorial Flinders Uni disability courses commended A five-year review of disability courses at Flinders University has seen both their high standard of academic programs and commitment to social, global and student-centred learning commended. The university, located south of Adelaide, offers several degrees unique in Australia, including a Bachelor of Disability and Developmental Education (also available as an Honours program), a Graduate Certificate in Disability Studies and Master of Disability Studies. “The content, teaching innovation, and commitment demonstrated in the delivery of the programs was praised by The Review Committee,” she said. “The Committee reported that courses were of high quality, socially responsible, student-focused and globally connected. The programs’ successful engagement with industry partners and stakeholders, through practicum placements in undergraduate and postgraduate courses, was also acknowledged.” The Bachelor of Disability and Meredith Brunker, from the university’s Disability and Community Inclusion Unit Developmental Education (BDDE) is a in the School of Health Sciences, said four-year equivalent course offered on enrolments had increased steadily over a full or part-time basis. the past five years, demonstrating the “The course can be delivered on-campus strength of the innovative curriculum 20150306 Link Disability Magazine OL.pdf 1 5/03/2015or 4:41:59 PM online, with options in fourth year of design and delivery. a major in Rehabilitation Counselling or an honours year focusing on research,” Ms Brunker said. “Graduates are qualified as Developmental Educators, with four work integrated learning placements throughout the course, and are eligible for full membership of Developmental Educators Australia Inc (DEAI).” Also on offer is the Graduate Certificate in Disability Studies (GCDS), a six-month full-time equivalent course which may provide entry into the Master of Disability Policy and Practice. For more information, including entry requirements for the Masters program, visit www.flinders.edu.au/sohs/sites/ disability-studies/ C M Y CM MY CY CMY K April 2015 — Vol 24/1 linkmagazine 15 Link: Issues Guilty Respite Children’s author Michelle Vasiliu, who has bipolar affective disorder, explores the parental guilt she experienced after being hospitalised four times in the past year. I’m sitting alone in a psychiatric hospital room. It’s a bit like an apartment suite really. The décor is attractive. Modern and stylish. No dirty finger prints smearing the pristine walls. No stains on what looks like a recently refurbished carpet job. The ensuite is just the way I like it - neat and tidy. Hubbie’s electric toothbrush and shaver are nowhere to be seen. Calming music hums in the background. It’s peaceful and it’s serene. There’s nothing too taxing they expect from my voluntary admission here. I’ve been assured my children are in good hands so there’s nothing to do but concentrate on getting well. 16 linkonline.com.au If only it were that simple. No-one warned me about the guilt. The guilt that consumes me when I rationalise why I chose to come here in the first place. In theory, the odds of getting better whilst in hospital as opposed to staying at home are in my favour. All my meals are cooked for me. Three meals per day in fact, as well as morning tea at 10am and sandwiches at 7.30pm for supper. For someone who loathes cooking, this in itself is a major plus. Besides doing my own laundry and keeping my room tidy, there’s not a skerrick of housework to do. There’s a lot of support, and it’s comforting to know it’s there. Every patient has a dedicated nurse for each morning, afternoon and night shift. On average, a psychiatrist will see you three to four times per week. Group therapy, including diversional art therapy and traditional ‘talk’ therapy are the norm, and upon request, a dedicated psychologist can be arranged on a weekly basis. There’s also a community out-worker who can advocate on behalf of those who need it, as well as a team of pastoral workers for those seeking spiritual guidance. All-in-all, it’s a pretty good place to be for those who need it. For someone like me. Someone like me, who suffers from clinical depression, and from time to time could greatly benefit from respite. It’s not all fun and good times though. Bags are checked upon admission. Drugs and alcohol are banned totally, and objects like scissors and razors are removed in case ideas of self-harm rear their ugly head. Medication is handed out by the nurses at scheduled times throughout the day. Walks and outings are April 2015 — Vol 24/1 strictly monitored. Attendance at groups is expected, and participation in sessions like mindfulness, relaxation, tai chai and so forth is highly encouraged. Simply sitting around is not considered conducive to one’s recovery, and rightly so. Before I came here, I waged up the pros and cons, and the pros came out in front. If I’m going to fully benefit from this opportunity that has been offered to me, however, I have to let go of the guilt. Mother’s guilt. The guilt that overwhelms me at times when I think about what I’ve done of my own choosing. Knowing I’ve left my 10 and 13-year-old daughter and son at home, without their mother, while she takes time out to ‘recover’. Their mother, who’s not at home making their school lunches, No-one warned me about the guilt. The guilt that consumes me when I rationalise why I chose to come here in the first place. cooking their evening meal, doing the school run or dropping them off at their extra-curricular activities. The mother who’s not supervising their homework and making sure they’re ready for the next day. The mother who isn’t there to share in that last goodnight snuggle, and kiss them good-night. I’ve been told my children are doing fine. Some of their teachers and family friends have even commented that they’ve demonstrated greater maturity as a result of having to take on more responsibility since I came into hospital. These are the things I try to tell myself when the guilt threatens to take over. That, and the fact, that if I go totally under, then I am no good to anyone, least of all my children and husband. That is why I choose to come into hospital for respite when I know my depression is proving just that little bit too much. Michelle Vasiliu is a Victorian-based writer and the author of My Happy Sad Mummy. (Check out our Books page for details.) www.michellevasiliu.com Transform your future with a scholarship Take the first step towards a new career and apply for a scholarship to complete a Certificate IV in Training and Assessment today. Become a qualified trainer in your chosen field of interest. Valued at up to $8,500, applications for the scholarship from Field are open to people with a disability over 18 years of age and living in Victoria. To request an application form April 2015 — Vol 24/1 03 9982 0100 [email protected] linkmagazine 17 FEATURE: Mobility Equipment Walk on A new robotic walking system is helping people with Spinal Cord Injuries in Queensland improve their mobility. Rewalk Robotics has received Therapeutic Goods Administration (TGA) approval in Australia for its exoskeleton mobility device. The American company will distribute the Rewalk system through Gold Coastbased Making Strides, the first dedicated spinal cord recovery centre in Australia. Making Strides director Kristee Shepherd said they were excited to be making the technology available to Australians. “Rewalk has the potential to reshape our vision of what life after a spinal cord injury looks like,” Ms Shepherd said. “It’s designed for people with paraplegia however we have a C-level client who has been able to use the ReWalk with the aid of some active hands gloves. The primary recommendation for using ReWalk would be good trunk control.” Rewalk is a wearable robotic exoskeleton that provides powered hip and knee motion to enable individuals with Spinal Cord Injury (SCI) to stand upright and walk. It provides user-initiated mobility through the integration of a wearable brace support, a computer-based control system and motion sensors. The system allows independent, controlled walking while mimicking the natural gait patterns of the legs. The TGA has approved the device for both rehabilitation and personal use. Making Strides is currently conducting rehabilitation training of the system with several clients. “It has been a wonderful experience to incorporate the Rewalk system into our program,” says Making Strides director of training Genny Kroll-Rosen. “It provides a form of exercise that may be particularly benefits for our clients in helping them reach their functional recovery-focused goals.” Jake Nunn, who became a T4 incomplete paraplegic after his motorbike collided with an obscured tree stump, crushing bits of his T5, T6 and T7, is currently using the Rewalk as part of his rehabilitation. “After using the Rewalk for a week it gave me a surreal feeling of standing tall and walking again,” Jake said. “Not only did I feel it was physically beneficial, but it was also mentally beneficial.” For fellow user Greg Lawry the Rewalk has the potential to get him back to work as a mechanic. “Before using it I expected it to be quite hard but, once in it I found it more confusing rather than difficult,” Gary said. “Once I realised I had to trust the machine, it became a lot easier. “For now, I plan on getting as independent in the Rewalk as possible, but the ultimate goal would be to use it as a daily source of mobility. My short-term goals are to achieve all the health benefits of being upright and mobile. Once I can move in the Rewalk independently, and can afford one for personal use, I see it as being invaluable in a workshop environment as I would be able to walk around vehicles, look into the bonnet to see the engine and walk under the hoist to examine underneath cars.” L–R: Greg Lawry hopes the Rewalk will enable him to return to work. Jake Nunn says using the Rewalk is mentally beneficial. 18 linkonline.com.au April 2015 — Vol 24/1 Take a seat Perseverance is the key when it comes to choosing mobility equipment for children, says mother-of-two, Simone, from Collie in WA’s south-west. “My advice to other parents is to look into all types of mobility equipment,” she says. “Trial as many as you can until you find one that is suited to your child, because there will be one but you may have to look for a while. Keep persevering and you will find the perfect one.” Simone’s two-year-old daughter, Brooklyn, has ‘Agenesis of the Corpus Callosum’ – a condition that means the nerves that join the right and left hemispheres of the brain did not develop, so the right and left parts of the brain cannot communicate with each other. with mobility issues, Simone says the X:Panda has “improved our lives incredibly”. “Since getting the X:Panda Brooklyn’s muscles have become stronger, she can sit at the table and be at the same height as everyone else, and she has started eating solids as it’s so easy for her to sit and eat because she is well-supported. She has improved so much in the time we have had the X:Panda.” “We chose the X:Panda because for Brooklyn’s small size and her low muscle tone – it looked to have the best and most supports where she needed them. This system also had the most interchangeable supports and it grows as your child grows which is the best part.” “Due to this condition Brooklyn’s development has been affected in nearly every aspect,” says Simone. “She has very low muscle tone, epilepsy, vision impairment, cerebral palsy, microcephaly, and global development delay.” In addition to the X:Panda, Simone says Brooklyn, a happy and bubbly toddler who loves spending time with big sister Ebony and being outdoors with the wind in her hair, spends 30 minutes each day in a standing frame which helps to strengthen her muscles and hip bones. Simone recently invested in an X:Panda paediatric seating system from AC Mobility. Designed especially for children “We also have a ‘Showerbuddy Tubdipper’ to assist her in the bath which is amazing,” she said. “I struggled with Brooklyn in her new X:Panda seating system. bathing before we got it. At night time she is in a ‘Symmetrisleep’ because she has a bit of a curve in her spine so we are trying to correct that while she is little. She also has a Squiggles Early Activity System which is a velcro mat with different interchangeable positioning supports.” Great Holidays and Travel for people with disabilities. • Nationally accredited family owned business since 1994 • Specialist travel agency offering over 80 holidays • Premium, boutique holiday experiences with high levels of care and personalised attention • Highly trained and experienced staff including full time registered nurse • Tailored range of group and individualised holidays • Registered service provider with NDIS For more information call 1300 363 713 (toll free) or visit our website www.leisureoptions.com.au Find us on Facebook Suite 44 574 Plummer Street Port Melbourne VIC 3207 Tel: 03 9646 0666 Fax 03 9646 5299 Email: [email protected] April 2015 — Vol 24/1 linkmagazine 19 FEATURE: Mobility Equipment Mobility scooter Stay lowdown safe So you’re in the market for a mobility scooter? But where do you start? And what should you know before taking the plunge? Link asked Bluesky Mobility expert Damian Ryan to give us his top tips. Once you’ve joined the ranks of mobility scooter or electric wheelchair drivers it’s important to drive safely. “Under Australian road rules, a mobility scooter is treated as a pedestrian — as long as it cannot travel faster than ten kilometres per hour and is used by a person who has difficulty walking or is unable to walk,” advises Damian Ryan from Bluesky Mobility. Consider your needs – when it comes to which sort of scooter is best for you, consider where and when you want to use it and the distances you plan to travel. Shoppers’ choice – if you plan to use your scooter primarily in the home and shopping centres, then size, turning circle and manoeuvrability will be top priorities. A compact four-wheel model might be the best choice. Hit the road – for outdoor travel, including varied terrain such as uneven footpaths, gravel, grassed areas and hills, then a larger four-wheel model will provide more power. You will also want your scooter to have suspension to safely cope with uneven terrain and provide a more comfortable ride. Medical factors – to safely drive a mobility scooter you’ll need good hearing and eyesight (glasses are fine), strength, coordination, balance and concentration. If you regularly take medicine that makes you drowsy, a scooter may not be a safe choice. Have a check-up with your doctor or occupational therapist before buying a scooter, and have regular follow-up visits. Watch your speed – stick to a maximum speed of ten kilometres per hour on footpaths, shared paths and roads. However, if you need to navigate steep hills or travel longer distances, then you’ll need a machine with a more powerful motor and larger battery capacity. Make sure you ask how many kilometres you will get out of each battery charge and how long it will take to charge. 20 linkonline.com.au Night owl – if you plan to be out on your scooter any time after the street lights go on, then the scooter must have front and rear lights and indicators. Load capacity – what kind of weight (ie; your’s!) will the scooter need to carry? If you are a larger person, you will need a more robust, heavy-duty model. Licensing, registration and insurance – you don’t need a license to drive a scooter or electric wheelchair in some states, but check with your state road authority for all the rules and regulations, including registration and insurance requirements. Get the right advice – buying a mobility device is a big step so make sure you talk to a reputable company, who will assess your needs and help you decide which product is right for you. Look also for a company that provides complimentary training around your home and neighbourhood at time of delivery. Some local councils also provide scooter training or have a local scooter club! “As a pedestrian, you should ideally drive your scooter on footpaths, shared paths, in parks and shopping centres, and should cross roads at pedestrian crossings. Only use your scooter on the road as a last resort. You should also use lower speeds in crowded areas and to suit rough terrain. Also, when travelling on footpaths, don't drive faster than the pedestrians around you." Damian says scooter drivers need to watch for parked cars, for cars reversing and for drivers opening their doors. “Never assume that a driver has seen you,” he says. “Use a bicycle flag, lights and reflectors and wear bright clothes to make you more visible. And your scooter must have front and rear lights and indicators if you plan to use it at night.” Driving your scooter after drinking alcohol is a no-no, as is overloading your machine with too much shopping. “Too much weight can make you more likely to tip over and large parcels may block your view.” April 2015 — Vol 24/1 April 2015 — Vol 24/1 linkmagazine 21 FEATURE: Mobility Equipment Life changer Over $4 million worth of personal mobility equipment has been claimed through the National Disability Insurance Scheme since its commencement in July 2013. Link discovered how new equipment has improved the quality of life of one family. Being able to go on a school trip to the beach is just one of the benefits of Harry Bolch’s new manual wheelchair, says mum Kelly. “Harry’s chair arrived just in time for him to go on a grade ten school excursion late last year,” she said. “There is no way he could have taken his motorised chair to the beach as it would have sunk into the sand. If the chair hadn’t arrived in time we would have kept Harry home from school that day as although he is small and light, it is not very dignified for a boy of his age to be carried around by adults.” Harry, 16, lives with his parents, Kelly and Jason, and younger brother, Thomas, in Mount Nelson, Tasmania. He was born with severe athetoid cerebral palsy, which causes his body to make involuntary movements. He is non-verbal and communicates through eye gazing, is a quadriplegic and is Percutaneous Endoscopic Gastrostomy (PEG) fed. “Harry outgrew his old manual chair a couple of years ago and we were finding it very difficult to obtain funding for a new one prior to Harry coming under the NDIS,” says Kelly. “Because of Harry’s disability his chair has a specialised supportive seating system and the cost was around $16,000, which we just didn’t have.” Kelly says Harry also has a motorised chair, which is ideal for town use but heavy and difficult to manoeuvre in tight places and not suitable for uneven terrain. 22 linkonline.com.au Harry is all smiles in his new chair. “The motorised chair is comfortable for Harry and is kinder on our backs because we only have to steer it instead of pushing, but it can’t be lifted up steps, including curbs, and it can’t go on planes because of its weight and size. We can’t take it anywhere we haven’t checked out beforehand. “For example, we were invited to a family friend’s birthday recently and, having rung the venue to check out access, we were told we would have no problem with the wheelchair. “We arrived to find one big step. Four big men tried to lift Harry’s chair over it but they could not manage to get it off the ground. “I know it sounds greedy to somebody who has not been involved with someone of Harry’s degree of disability, but two chairs are essential for him.” The new manual chair also means Harry won’t have to miss school when his motorised chair is in for a service or being fixed. “Previously we had no choice but to cram Harry into his old chair which he found very uncomfortable. It was bad for his posture and we couldn’t send him to school as he could only sit in the old chair for short periods of time.” When it comes to the NDIS, Kelly says their family’s experience has been positive. “Life has certainly changed for the better,” she says. “We have a great coordinator who actually used to be a therapist, so she has quite a bit of insight into a person's life with Harry's degree of disability. April 2015 — Vol 24/1 “We are currently reviewing Harry's plan for the next 12 months and it’s great that he is so involved and having his say. While we all recognise that Harry should have a major say in his plan, our coordinator also recognises that Harry's plan impacts our whole family.” The introduction of the NDIS has also brought job security for Kelly, who previously had to use annual leave or take leave without pay during school holidays to care for Harry. FEATURE PRODUCT “Prior to every school holiday break, year after year, I'd have to apply to the State Government and hold my breath to see if they had any available funding so we could get a carer for Harry,” she said. “There was never enough funding to go around so I always ended up using all of my annual leave or taking leave without pay. Thankfully, I work for a great employer who was very patient and understanding. “Jason also had to use all his annual leave so, for a long time; we were not able to take leave together for breaks as a family. Now those hours are a part of Harry's plan and it's been such a relief to not have this stress in our lives and know Harry is happy and cared for.” A spokesperson for the National Disability Insurance Agency said under the NDIS, assistive technology, including mobility equipment like wheelchairs and scooters, is provided to support people with disability to live more independently and enable participation in the community and/or employment. “The NDIS will always respond to the needs of a person who requires assistance with mobility through provision of the most appropriate equipment. The NDIS will also fund health practitioners to assist a person to choose the right piece of equipment and, when necessary, to teach them how to use that equipment.” www.ndis.gov.au SATELLITE ACCELERATOR • Cord & cordless versions • Left or right hand • Two handed driving • Reduced driver fatigue • Smooth acceleration • Acceleration safety cut-out • Proven in Europe since 1999 • Nationwide backup service The new Satellite Accelerator AC2002 gives you the opportunity to live a truly unique experience when getting behind the wheel. Keeping both hands on the steering wheel, it gives you intuitive control over the operation of your car’s speed, in all driving conditions, making driving the ultimate pleasure. Designed to be used in combination with the FS2001 Brake Lever. www.totalability.com.au For full product listing & installers April 2015 — Vol 24/1 call 1300 858 410 Total Ability - Australian owned & exclusive distributor for Fadiel Italiana linkmagazine 23 FEATURE: Mobility Equipment New Australian invention to benefit wheelchair users worldwide A device that enables wheelchairs to climb up step has been developed by Northcott Innovation, in partnership with Mobility 2000 and the University of Technology Sydney’s Department of Mechatronic Engineering. Dubbed ‘The Step Climber’, the device can be attached to any sized two-wheel power wheelchair or scooter. “The Step Climber will mean anyone using a wheelchair can go up, or come down, a single step without needing to buy a hugely expensive piece of new equipment,” Northcott Innovation Executive Director Liz Forsyth said. “It will give people with limited mobility the opportunity to more easily navigate public streets and many buildings throughout the world, further levelling the playing field and helping to build an inclusive society.” Ms Forsyth said Northcott Innovation is currently showcasing the Step Climber to potential partners and manufacturers around the world, with the aim of securing commercial agreements to manufacture and distribute the device. “Our board member, Dr Rob Silberstein, was recently in Nashville showcasing the Step Climber and we are convinced manufacturers will see the enormous potential this device presents,” she said. The commercial grade Step Climber prototype was unveiled at the opening of Northcott Innovation on March 31. 24 linkonline.com.au April 2015 — Vol 24/1 How do recent Aged Care changes affect me? Do you need information on disability related issues? Where do I get independent information so I can make informed decisions? Seniors Information Service (SIS) is an independent, charitable organisation that has been providing support, advice and information for over 20 years to South Australian on ageing, disability and health issues such as: Navigating health and social support systems Retirement housing and low cost rental Residential aged care Concessions available for Seniors Remaining independent in your own home Digital Literacy and computer training Mobility equipment - Safety and Support In addition to a wide range of printed material available free of charge regarding these and many other topics, SIS offers monthly seminars in our Community Centre on the following topics: Age Care costs and how the system works Retirement villages – what to consider before moving Financial Planning for Retirement – What Should I Know? Estate Planning (Wills, Assets, Contracts, Pensions, Power of Attorney and Advanced Care Directives) Mobility Equipment Safety Digital Literacy and Cyber Security Contact SIS for bookings and more information. HELPLINE: (08) 8168 8776 Country SA: 1800 636 368 149 Currie St, Adelaide [email protected] www.seniors.asn.au FEATURE: Mobility Equipment Mobility aid Meccano A modular kit of interchangeable mobility aid parts from crutches to walking frames is set to change the lives of some of the world’s poorest people with disabilities thanks to a design engineering student from Brunel University London. Twenty-one-year-old Cara O’Sullivan realised the opportunity after a year’s placement with Surrey-based charity, the Medical Engineering Resource Unit (MERU). “The changes that MERU products can make to the lives of children with disability inspired me to fundraise to manufacture a range of the products for a charity called Kiya Survivors, which offers support to young people with disabilities and their families living in poverty in Peru and Tanzania,” she said. “Whilst visiting Kiya Survivor’s physiotherapy centre in Peru, I realised that while the developed world can be generous in donating unwanted walkers and crutches, they come from a wide variety of different manufacturers and so perfectly good parts from one walking aid can’t be used to repair another one. “When it came to developing a project for my final year (at uni) it was clear that I could use my design and engineering skills to help not only the youngsters I had met in Peru, but those in similar circumstances around the world.” The project has seen Cara design core interchangeable components which work together like Meccano and, just like the toy, can be easily and quickly disassembled and re-used. “By being so adaptable, the walking aid will be able to meet the user’s exact needs and provide the required support throughout changes in their condition,” she said. “The system is more sustainable and cost-effective because the walking aid will gradually evolve with the user rather than having to get an entirely new aid each time their condition changes." As part of the project, Cara will produce a design manual for the modular parts so they can be made by the many thousands of skilled developing world craftsmen and mechanics who keep cars, trucks and bikes running with little or no access to spare parts. “Harnessing their incredible skills and inventiveness will be the key to achieving widespread adoption, and fits in with the ethos of helping build long-term local economies rather than simply donating finished goods.” Cara’s project will be featured in the Made in Brunel Exhibition in London from 18-21. Visit www.madeinbrunel. com for details. Cara O’Sullivan with her Meccano-inspired mobility aids. 26 linkonline.com.au April 2015 — Vol 24/1 Ship shape So you’ve bought a new wheelchair or mobility scooter but how do you keep it looking good? We asked the experts at AC Mobility to give us their tips on keeping your equipment in good working order. • Give your wheelchair or scooter a good clean regularly, if not daily, and especially after you’ve been out in the rain. • For the driver’s seat upholstery, use soapy water but wring out the sponge or cloth before scrubbing. Don’t use the device until it is completely dry. • For the frame, wipe with a damp cloth but be sure not to splash/spray the wheelchair with water, as doing so may damage the motor, electrical wiring and battery. • If compressed air is available, use this to clean your wheelchair or scooter. But don’t exceed 7K and keep the nozzle at least 10cms away from your device. • For the casing, wipe with a damp cloth. Once dry, coat the casing with a light layer of wax, if desired. April 2015 — Vol 24/1 Bob and Ian in the workshop at AC Mobility. • Service your chair or scooter once a year. This will make sure that issues are picked up before they become serious, and can help avoid breakdowns. During the service the ball bearings, tyres and batteries will be checked, and nuts and bolts will be tightened if required. • And if something goes wrong with your chair or scooter then make sure you take it to a reputable company for repairs. Perth-based AC Mobility has introduced a mobile repair service for wheelchairs, scooters and other rehabilitation and mobility equipment. All repairs are guaranteed and performed by experienced technicians. linkmagazine 27 FEATURE: Mobility Equipment Safety first Mobility insurance specialist, Blue Badge Insurance, has launched a safety and awareness campaign to encourage the community to be more aware of mobility scooter users. “Motorists need to be more alert as the low profile of these devices can make them hard to spot,” says Blue Badge chief executive Nikolas Witcombe. “Councils need to maintain footpaths and provide ramps to protect riders from having to use the road. And, as a whole, if everyone just took more notice, then fewer accidents would happen.” “There are currently 120,000 mobility scooter users Australia-wide with numbers growing at around nine per cent annually and expected to reach 280,000 within ten years,” says Mr Witcombe. He said the need for a safety and awareness campaign was supported by the recent Blue Badge Mobility Scooter Safety and Insurance Survey, which revealed that 25 per cent of mobility scooter users had been involved in an Blue Badge chief executive Nicolas Witcombe. The campaign comes as the number of mobility scooters on our footpaths climbs rapidly. Stay safe Tips for the general public from Blue Badge Insurance: Keep an eye out for mobility scooters as you go about your day. Double-check footpath traffic when reversing your car, particularly from driveways. For mobility scooter users: If you encounter a mobility scooter on the road, slow down and allow at least a metre gap when passing them. Be seen! Consider purchasing safety equipment including flags, lights and reflectors. Give mobility scooter users plenty of time to cross the road. Watch out for vehicles leaving and entering driveways, never assume the driver has seen you. As a pedestrian, be prepared to give way to scooters if the footpath narrows or is under construction. Don’t obstruct access - keep your bins off the footpath. Keep vegetation in front of your house maintained so it doesn’t encroach onto footpaths. 28 linkonline.com.au Stick to footpaths. Only ride on roads if there is no footpath and ensure you can be seen. Only cross roads at pedestrian crossings and wait for the green light. Don’t block pedestrian access when you park your mobility scooter. Adjust your driving to the conditions and don’t use slopes that are too steep. Make turns slowly and approach ramps and kerbs head on. Keep the load down – don’t carry too many parcels. *These safety tips are not a substitute for specific professional advice and product training. Blue Badge Insurance recommends that you always speak to a health professional and personally try out mobility products to ensure suitability before purchasing. www.bluebadge.com.au April 2015 — Vol 24/1 accident at some point and 38 per cent were involved in a near-miss at least once a year. “The survey showed that most mobility scooter users are perfectly confident when it comes to operating their device, but it is external factors out of their control they fear most,” Mr Witcombe said. Of those surveyed, cars reversing out of driveways worried 33 per cent, 31 per cent felt at risk when crossing the road, 52 per cent said cracks in the footpath were an issue in their local area and 41.5 per cent found a lack of footpath ramps a barrier to getting around. Twenty-five per cent of mobility scooter users had been involved in an accident at some point and 38 per cent were involved in a near-miss. Despite these concerns, Mr Witcombe said very few mobility scooter owners and electric wheelchair users held comprehensive insurance. “Forty-five per cent of current mobility scooter users are not insured at all and 46 per cent of those who believed they are covered by their home and contents insurance, could in fact be underinsured,” he said. “Some home and contents policies cover a mobility scooter while it’s at home, but not necessarily once they leave the house. For peace of mind, we would urge all mobility scooter users to check they are comprehensively covered.” Action NG Family Range Action®4 NG ® • Lightweight wheelchair • Double crossbar • Highly configurable with a huge range of options • Available in different versions like hemiplegic, one arm drive, double handrim, transit and heavy duty (up to 160kg user weight) The ‘next generation’ of out of the box, customisable wheelchairs has truly arrived. They are a real family of foldable wheelchairs sharing many options. Product weights starting as low as 10kg weight capacity as great as 160kg and widths from 8-24” and depths 8-20”. Parts are cross compatible and interchangeable throughout the Action® NG range. www.invacare.com.au April 2015 — Vol 24/1 linkmagazine 29 FEATURE: Mobility Equipment Travelling light New Zealand, America, Hong Kong, London and Paris are just some of the exotic locations that intrepid traveller Scott Sanderson has explored thanks to his Luggie scooter. Melbourne-based Scott, who has Multiple Sclerosis and finds walking long distances difficult, says the Luggie scooter has helped him travel to many overseas destinations. “My wife and I very much enjoy travelling,” he said. “I purchased a Luggie Scooter three-and-a-half years ago and have used it extensively both at home and overseas. The Luggie has been reliable, easy to handle with fantastic range and capable of travelling on all sorts of terrain. “With the Lithium-ion battery the scooter is light enough to be folded and lifted and put into motor vehicles, especially taxis. “It’s easy to fold up to put on an aeroplane and easy to handle in my wheeled carry bag. And you can travel with it on aeroplanes at no extra charge.” An internationally known brand, Scott was able to pick up a spare battery in London, which gave him the extra range when he wanted to explore further afield. “Although I was able to buy a spare battery in London, I would also recommend taking one with you. I carried it under the seat to greatly increase my range when exploring Paris." Scott Sanderson says the Luggie has helped him travel the world. Problem with your telephone, mobile phone or internet service? The Telecommunications Industry Ombudsman is a free and independent dispute resolution service for people with complaints about telecommunications or internet services. If you have tried to resolve a complaint with your phone or internet service provider, but are not making any progress then contact the TIO. Website Freecall Freefax TTY Interpreter service www.tio.com.au 1800 062 058 1800 630 614 1800 675 692 131 450 The TIO may be able to help. 30 linkonline.com.au April 2015 — Vol 24/1 Beyond the footpath Sticking to the path may soon be a thing of the past for wheelchair users, with a United States-based social enterprise launching an off-road chair. veterans who want to get back on the trail, to parents who want to roll off the pavement to watch their kids’ soccer games,” says Tish. Likened to an arm-powered mountain bike, the Freedom Chair by Grit enables people to travel off-road on rough terrain, such as trails, in parks and other places where regular wheelchairs get trapped. “We’re (also) working on a special beach kit.” Grit chief executive and co-founder, Tish Scolnik, said the chair had been developed after close consultation with wheelchair users and bicycle retailers across the United States, and is being promoted via an online crowdfunding initiative. “The Freedom Chair appeals to a wide audience of riders, from returning Wheelchair user Stephen Pento said the Freedom Chair was faster and more mobile that his everyday chair. “As for getting out and having a good time off-roading, this is much better. This is great.” The Freedom Chair is currently only available to Australian customers via Grit's website, however a local distributor is likely to be announced soon. Back on the road Jenny Giaccio is over the moon about the Royal Automobile of South Australia’s new roadside assistance service for mobility scooters. “The RAA blokes who come out to help are just wonderful,” says Jenny, from Adelaide’s north. “I’ve called them several times for flat tyres and when the engine wouldn’t start - one time they even called me an access cab to get me home from the shops.” Having used a scooter for over two years due to arthritis and a golden staph infection in her ankle, Jenny participated in a 12-month pilot program run by the RAA prior to the service’s official introduction in November last year. RAA Senior Manager Mobility and Automotive Policy Mark Borlace said the popularity of mobility scooters, along with the fact that 40% of RAA members are aged over 60, were reasons behind the program. “We understand many of our members, as they age, either choose not to drive April 2015 — Vol 24/1 as often any more, or use a mobility scooter as their sole mode of transport,” Mr Borlace said. During the trial period, flat tyres and flat or faulty batteries were the most common breakdowns reported to the RAA. “In many cases the Patrol attended the member’s home to help them out after they found their scooter had a flat tyre or wouldn’t start just prior to taking a trip,” Mr Borlace said. “If the member is located on the roadside when their mobility scooter breaks down though, our patrols will do all they can to get it going again. If it’s not possible, they’ll make arrangements to get the member and their scooter home or to a place of repair.” Roadside assistance for mobility scooters is available to RAA Road Service Members in both Adelaide and regional SA. The NRMA in New South Wales and RACQ in Queensland advised Link that they provide free assistance to mobility scooter and wheelchair users as a community service. We suggest people check with their local motoring association to check what level of cover is available. linkmagazine 31 Link: Advertorial Latest mobiles smarter than you think Access to the internet and digital technology is well recognised as being central to social, cultural and economic participation. N But how would you connect if you couldn’t talk? How would you answer the phone, have a conversation with your friend, or order a sandwich at the café? This is the reality faced by people with complex communication needs every day, all of their lives. In Australia, thousands of people have a severe or profound communication disability, also known as Complex Communication Needs (CCN). These numbers will likely rise as our life expectancy increases and the population ages. Thankfully, tablet and mobile technologies are offering new opportunities for people living with CCN. To tap into this potential the Telstra Foundation is partnering with the Independent Living Centre (ILC) NSW to explore how new mobile and tablet technologies can be used to improve connectedness. Following the success of a pilot project delivered in metropolitan, regional and rural areas of NSW, the Everyone Connects project will now be rolled out across Australia. Through the project, we aim to increase awareness of assistive technologies, including mainstream mobile and tablet technologies, accessories and accessibility options. The pilot project demonstrated how many young people with severe disability have little or no opportunity to experiment with and learn how to use technology – specifically smart devices – and participate using social media. As part of the next phase of the project, young people (aged 12-25) and adults with CCN will attend workshops delivered by speech pathologists and occupational therapists to learn and trial a range of technologies 32 linkonline.com.au including tablets, smartphones, software and apps – many for the first time. This is so important because the use of smartphones and tablets is now almost ubiquitous - 89% of Australians aged 18-75 own a smartphone, 60% own a tablet and increasingly many households have both. With accessibility now being built right into the operating systems of smartphones and tablets, as well as many apps and websites, individuals are increasingly able to personalise their device to meet their specific needs. The challenge is how to ensure people are aware that these features exist and know how to use them. To this end, Telstra recently launched a Find Accessible Devices portal on our website. The site helps our customers with sensory or physical limitations to find the phone that's right for them, using filters for vision, hearing, dexterity, cognition and hardware to screen a range of accessibility features. This is a small but important step in helping people to get the most out of their communication technologies. • You can email the Everyone Connects team on everyoneconnects@ilcnsw. asn.au to learn more about the CCN project. Resources developed through the ILC’s (NSW) project will all be publicly available via their website www.ilcnsw.asn.au • To visit Telstra’s Find Accessible Devices portal go to www.telstra.com. au/mobile-phones/find-accessibledevices/#gari-features/ April 2015 — Vol 24/1 15138-NRS-App 1513 The NRS app NRS app The a smart way to make a smart way to make relay calls relay calls • a convenient new way to • a convenient way to access NRS callnew options access NRS call options • extra call-support functions • extra call-support functions • both apple and android • both apple and android • a world first for the NRS! • a world first for the NRS! find out find out more: more: www.relayservice.gov.au www.relayservice.gov.au A phone solution for people who are deaf A phone solution people who are deaf or have a hearing orfor speech impairment 11/14 11/14 or have a hearing or speech impairment April 2015 — Vol 24/1 15138-NRS-App-advertisement-01.indd 1 15138-NRS-App-advertisement-210x285-02.indd 1 linkmagazine 33 4/03/15 3:24 PM 16/03/15 3:38 PM Link: Interview Keeping it under control In mid-2012 Jillian Kingsford Smith’s life changed dramatically. The owner of a successful digital marketing agency in Brisbane, the high achieving 42-year-old started to feel exhausted and unwell, but she put the body aches and pains down to a bad case of the flu and the stress of dealing with a messy marriage break-up. A few days later, her condition worsening and suffering from dizzy spells, Jillian visited her GP and was promptly marched off to the Emergency Department of the local hospital. Within 24 hours of admission she was diagnosed with Multiple Sclerosis (MS). But it didn’t end there. Ten weeks later she found a lump in her breast and was diagnosed with breast cancer, later undergoing a mastectomy, followed by stage one of a reconstruction and the removal of 28 lymph nodes. Grappling with what the MS diagnosis meant for her future and desperate for accurate information, Jillian decided to write a self-help book for people newly diagnosed with MS. The result, Taking Control, became a best-seller. “Writing a book about MS was equal parts defiance and denial,” Jillian says. “I remember lying in my hospital bed just after I was told I had MS and wondering what my plan of action would be. The first thing I did was Google ‘MS’ and it was the worst thing I could have done. There were a million entries about the topic but nothing that gave me what I was looking for. I was looking for someone to give me 'the plan.' I wanted it laid out for me.” In May she will release a follow-up book, Taking Control Together, which offers advice to partners, family members, friends and carers of people with MS. It includes interviews with 15 people who have a loved one with MS, including Tim Ferguson’s wife, Stephanie Mills, and 1990s supermodel, Emma Balfour, whose parents both have the condition. Link talked to Jillian about managing her MS and why health should be our number one priority. In Taking Control you display a high level of rationality and a strong focus on problem-solving, even during the early stages of diagnosis. How did you 34 linkonline.com.au maintain such a level-headed approach and did emotion ever take over? There were certainly times when emotion took over. I remember howling and screaming into my pillow on many a dark night. I was in a constant state of disbelief yet I never once thought ‘why me?’ It was more a case of getting through each day; getting through the pain or getting through the confusion. I knew that I may potentially get worse before I got better, but I accepted that everything was a process I had to go through. So on those dark nights it was just getting the emotion out so I could find some form of release and then knowing that every day I put behind me was a day closer to getting though all the horrible treatments and towards being able to move on with my life. As for remaining level-headed, I think there were a few factors at play. Firstly, I wasn’t about to be defeated by anything that was going on. I just didn’t see any alternative. Wallowing wasn’t going to make the MS nor breast cancer go away. Neither was ignoring it. I had to tackle everything head on. I had to refocus. Part of that was immersing myself in my writing. It was easier to talk about other people’s problems than confront my own. The whole journey has really given me a new sense of balance and certainly a more empathetic outlook towards the world. You say you were frustrated by the lack of information on MS that was available. Has this improved since your diagnosis? In a way, I think the opposite has happened. I think we’ve seen an increase in the information out there, in the form of blogs and social media. It’s never been more important to ensure you're getting your information from a reliable source. In the last two years I’ve seen enormous amounts of information publicised about new miracle treatments, neither of which stood the test of time. April 2015 — Vol 24/1 Multiple Sclerosis occurs when cells in the body's own immune system enter the central nervous system and cause inflammation to the brain, spinal cord and optic nerves, often resulting in impairment of motor, sensory and cognitive functions. An estimated 23,000 Australians have MS. Visit www.msaustralia. org.au for more information. And due to the easy accessibility and volume of information in the public domain, everyone is an expert. If it’s one thing I’ve learned, it’s that everyone’s disease course is different and there’s no ‘one size fits all’ approach. It’s important to work out who you can trust and what media or organisations will provide you with reliable, positive and rational information. As well as being a great resource on MS, Taking Control reminds us of the importance of making our health a priority. Did you set out to do this? Without a doubt. I knew my own poor health was to blame for the double diagnosis of MS and breast cancer. While being diagnosed with two fairly serious diseases within weeks of each other is dramatic, the way I let my life become unhealthy, overly cluttered and busy is actually fairly April 2015 — Vol 24/1 normal for most people. And when you let it all get out of control it can have dire consequences. Since the release of the first book, I’ve gone on to be a strong advocate around the importance of prioritising your health – physical, mental and emotional. There is nothing more important - your health can slip away from you all too easily and none of us are bulletproof. But the best thing is, prioritising your health is actually the easiest thing in the world to do once you place the highest value on it. Your new book focuses on the role of friends, family and carers in managing MS. What role did (and does) your family play? My family are the reason I’m writing Taking Control Together. They have been my strength through this little adventure but I wondered that if they were my strength, then who was supporting them? Chronic disease or disability affects far more than just the person diagnosed. It can be a steep learning curve and a very confusing and emotional time for those closest to the person living with the illness - be it their parents, spouse, siblings, children or friends. You can talk about support in so many ways, be it physical, financial, emotional or even via sharing your knowledge or wisdom. My family have certainly supported me in all of those ways but, most importantly, my family are my cheer squad. They cheer me on when things are great and pep talk me when things are tough. So many things in life are constantly changing when you are living with a disability so to have that constant and unwavering support and encouragement from the key people in your life is priceless. linkmagazine 35 Link: Interview Is there a favourite interview in the book or piece of advice that particularly resonated with you? So much of what everyone said resonates with me and while I hope I’ve created something that helps a lot of other people, writing the book also served as informal therapy for me. Tim Ferguson was instrumental in inspiring me to follow my passion of writing books full-time. He taught me that living with a disability is essentially a trade-off and that you have to learn to be adaptive very quickly, and if you can learn those two skills then you can create a very successful and fulfilling life. Another piece of advice came from Linda, who was actually one of the first people I interviewed. At that point of my diagnosis I was waking up every morning and my first thought would be ‘bugger…I’ve got MS.’ She counselled me that she too felt the same early in her diagnosis and that the feeling does go away after a while and is replaced with more normal thoughts. I think both bits of advice are great for anyone with any disability or chronic illness. How is your health now? What's your current treatment regime? To be honest, I think I’m healthier now than I’ve ever been in my life, despite dealing with a double diagnosis of both MS and breast cancer over the last 2.5 years. Physically, you would barely recognise anything is wrong. While I feel that my mobility is declining somewhat, 36 linkonline.com.au I only use a stick about 50% of the time and this is mainly because the dizziness and vertigo are so overwhelming. I’ve had to become more selective about what I use my mental and physical energy on and that means I only go out to public events that are important to me or that will uplift me. My treatment regime is tricky. The way you would treat cancer is pretty much the opposite of how you would treat MS. In layman’s term, you want to build your immune system up when treating cancer, yet dampen it somewhat when treating MS so as it stops attacking your brain. My team of specialists and I decided it was more important to treat the cancer and get it out of my system and I personally want to be at least five years’ cancer free until I even consider an immune-modifying treatment for the MS. So, basically, the rest is up to me. I can’t rely on drugs to keep the MS from progressing, so I instead have to rely on taking control of my health. Diet, rest, exercise, sunlight and water is my mantra. I follow a very low saturated fat die; I ensure I look after my energy levels and get the appropriate amount of rest. I do reformer pilates several times a week to help work on my balance and coordination. This has been a game changer for me as I now feel stronger and more confident. Taking Control and Taking Control Together are available from Jillian’s website www.take20stories.com Jillian’s top tips for dealing with MS Tackle the disease head on and how you allow the symptoms to effect you. You can choose to lose control or you can choose to take control. As often as possible, take the pressure off yourself and have a laugh. Surround yourself with positive fun people who don't treat you any differently. Knowing that you have a disability doesn’t make you 'less' in any way. The learning and inner strength that comes from it can help you redirect and enjoy your life even more. If at all possible, take some time off to rest and heal after your diagnosis. The first year or two are a huge period of adjustment – physically, mentally and emotionally. Never be afraid to ask a doctor or specialist to explain something as many times as it takes for you to understand it. April 2015 — Vol 24/1 Link: Disability Care In sickness and in health Lynn Geddes’ unwavering commitment to her husband’s rehabilitation after an horrific accident six years ago has earned her the Continence Foundation of Australia’s Carer of the Year award, writes Maria Whitmore. Six years ago, a pallet of paper fell off the back of a semi-trailer and onto the head of interstate truck driver Paul Geddes. Days after the accident, doctors urged his wife, Lynn, to turn off his life support, telling her he would never recover from his horrific brain injuries. She refused. Nor would she send Paul, then aged 60, to a nursing home when he emerged from his coma three weeks later. Rather than give up hope, Lynn gave up her factory job in Albury, and at the age of 52 began the daunting task of rehabilitating her husband at home in Holbrook, southern New South Wales. Paul’s health suffered another setback six months later when surgeons operated on the worst of the brain aneurisms triggered by the accident, and he suffered a devastating stroke. He came home for good after the operation and now, with the help of a paid carer eight hours each weekday, Lynn manages Paul’s rehabilitation. A typical day starts before he’s even out of bed when she takes him through his arm and leg stretches. After toileting, showering and dressing him she starts the regime of exercises that go on all day, interrupted by meals, toileting and the odd half-hour break when he is strapped into his easy-stand exerciser in front of the telly. Every day he has a work-out on the antiquated exercise bike, which involves April 2015 — Vol 24/1 Paul and Lynn Geddes shoving his wheelchair up possible so he can reach strapping his feet in the wedging chocks into the doesn’t slide. It takes two it’s back-breaking work. as close as the pedals, pedal, and frame so it people and Throw in daily reading and writing sessions with a white board and you have a typical day at the Geddes’. And of course there’s the cooking, cleaning, shopping and laundry for the family, which includes two adult children living at home – one with Asperger’s, the other with autism. Attention to her husband’s toileting has paid off and Paul is now virtually accident free, even though he still wears incontinence products during the day and a uridome at night. Lynn’s motivation is fuelled by his extraordinary progress that everyone, including the experts, agrees would not have happened without her unwavering commitment. Paul can now walk short distances and pull himself up onto the commode unassisted. “It’s taken five years to get to where we are and everyone can notice the improvement,” Lynn said. For advice and support on bladder and bowel management visit continence. org.au linkmagazine 37 Link: Travel River city shines Brisbane has plenty to offer travellers with disability, discovers travel writer Marayke Jonkers. As I sit aboard the wheelchair accessible ferry gliding beneath the Storey Bridge it’s easy to understand why Brisbane is nicknamed the River City. The river snakes its way through major attractions and is the heart and soul of the city, providing the backdrop to some of Brisbane’s most breathtaking scenery. What is a surprise are the hidden gems for travellers seeking accessibility. My journey began leaving the wheelchair friendly train station, where I encounter Australia’s longest Braille Trail on the Queen Street Mall and tactile street signs. A trial is currently underway to have the world’s first ‘speak hear’ signs along the 1.6-kilometre trail which, in the future, may speak directly to a user’s mobile 38 linkonline.com.au phone via Bluetooth, providing fun and informative facts about each location. extraordinary wooden sculpture of Mary McKillop in Old St. Stephen’s Church. My base for my Brisbane adventure is The Point Hotel, Kangaroo Point, which has everything from a swimming pool to gym. More importantly, the bathroom access is great - I could see in the lowered mirror to apply make-up before heading out to enjoy Brisbane’s culinary offerings at Lamberts restaurant downstairs, then to Queensland’s Performing Arts Centre (QPAC) for a performance of the colourful Nutcracker Ballet at the Play House. Once you’ve travelled along the river by boat, why not view it from the air on Southbanks’ Wheel of Brisbane. With ramped access to the gondola you can sit back and enjoy an audio tour. Next morning I explored the city with a passionate local on a free Brisbane Greeters tour. Our cheerful guide, Anne Marie, soon had us visiting historic sites such as Customs House, and the From the natural beauty of Southbank, to historical buildings, music festivals and fine dining there is something to suit everyone’s taste in the River City – and with a little pre-planning most of it will be accessible. Visit www.marayke.com for more travel information on Brisbane. *The writer was a guest of The Point Brisbane, Lamberts Restaurant, Wheel of Brisbane and QPAC. April 2015 — Vol 24/1 Top free things to do in Brisbane South Bank – markets, waterfront dining, buskers and a patrolled manmade beach. Take a ‘selfie’ with the iconic ‘Brisbane’ sign created by people with disabilities through ‘Monte Lupo’ for the Brisbane G20. The Riverwalk – stunning views of the city on this floating walkway along the river. City Hopper tour – the red and whitechecked City Hopper ferries are free and take a loop around the Brisbane River. A great way to reach your destination or you can also do the full loop for a beautiful overview of the River City. Departing every 30 minutes ramped wheelchair access is provided, however at low tide the angle is steep so you may need assistance in a manual wheelchair. Brisbane Greeters tour – from historical sites to food and shopping themed tours there’s something for everyone. If you book in advance and mention your access needs the guides in bright red T-shirts will be more than equipped to create a suitable route through the city. Visit the Cultural Centre – this riverside precinct includes Queensland Art Gallery and Gallery of Modern Art (QAGOMA), Queensland Performing Arts Centre, State Library of Queensland, and the Queensland Museum and Sciencentre. Botanic Gardens all abilities playground – with green turrets and multiple play stations this new playground creates quality play facilities where children of all abilities can play together, including children who use wheelchairs. Brisbane Town Hall Mobility Centre – home to accessibility maps, wheelchair hire and electric mobility device charging stations. Photo L–R: The Wheel of Brisbane. Marayke with Brisbane greeter Anne Marie Courtesy of Marion Jonkers Photography April 2015 — Vol 24/1 linkmagazine 39 REAL STORIES. REAL The Australian Training Awards are the peak, national awards for the vocational education and training (VET) sector. The Disability Training - Employer Award is one of 18 categories at the Australian Training Awards. The award recognises employers who demonstrate outstanding outcomes from the provision of nationally recognised training* to staff with disability. Applications are now open for this award and close on 29 May 2015. Train2Learn - 2014 Winner Brite Institute - 2014 Finalist Train2Learn is a registered training organisation in Victoria providing nationally recognised training in foundation skills, food processing and warehousing for people with a range of disabilities. Through collaboration with TAFEs and private training providers across Victoria, Train2Learn’s industry-led, workplacebased learning education programme was awarded the inaugural Disability Training Initiative Award (known as the Disability Training – Employer Award from 2015) at the Australian Training Awards for its outstanding training practices. “Train2Learn endeavours to ensure every Australian is given the chance to be a part of society. Our passion, determination and willingness to be robust and flexible in an ever changing sphere of education, job services and national policy is the foundation of our organisation,” said Kevin Hall,Train2Learn’s Business Development Manager. Train2Learn works with Australian Apprenticeships Centres and group training organisations to modify workplaces to accommodate students with a range of disabilities, cultivating inclusivity and participation acceptance. More than 300 clients with disability have been supported to return to work. Since the beginning of this year, Train2Learn has supported its community enterprises to employ all of the disability clients as direct employees and provide them with ongoing part time outcomes which support reductions in disability support payments for clients and assists them returning back into mainstream work. “Our collaborative employment programs with these partners have seen 90 per cent of our clients return back to work and cease receiving benefits. Their stories of overcoming intergenerational unemployment because of education and employment are really inspirational,” Kevin said. Brite Institute provides training and employment services to people with disability and to people in the community experiencing vocational disadvantage, in order to maximise equity and access to a better life. In 2014, Brite was a finalist in the Disability Training Initiative Award (known as the Disability Training – Employer Award from 2015) at the Australian Training Awards. Executive Officer of Brite Institute, Jan Roberts is proud of the organisation’s achievements. She says, “Being part of the Australian Training Awards was a huge honour given it was the award category’s inaugural year, and the fact that Brite has been a service provider to people with disability for more than 35 years. “The Australian Training Awards is a fabulous opportunity to acknowledge the work of employers and public and private training providers. It was fantastic to network and become familiar with some of the innovative practices of other organisations,” Jan said. Brite provides accredited training in industry sectors including home and community care, disability support, horticulture and competitive manufacturing. Brite provides supported employment through its BritePak and Brite Plants divisions. These divisions give Brite’s employees the opportunity to develop work and social skills in practical and supported environments. BritePak, Brite’s manufacturing and contract packaging division, allows employees to participate in tasks ranging from simple one-step tasks to high volume assembly tasks with multiple steps. At Brite Plants, employees work with plants, shrubs, trees and potted plants in their training of all aspects of nursery and plant production. * Nationally recognised training qualifications are based on 'Training Packages'. A training package is a set of nationally endorsed standards and qualifications recognising and assessing people's skills in a specific industry, industry sector or enterprise. 40 forlinkonline.com.au April 2015 — Vol 24/1 ACHIEVEMENTS. Be recognised nationally for your provision of vocational education and training to people with disability by entering the 2014 Disability Training – Employer Award. Find the selection criteria and application form on the Australian Training Awards website. Activ Pathways - 2014 Finalist Activ Pathways offers programmes to people living with disability and the disability sector workforce. In 2014, Activ Pathways was one of the top three employers in Australia when it became a finalist at the Australian Training Awards. “We are extremely proud of this achievement. It has motivated us to continue with our journey supporting people with a disability across the sector to achieve their goals through recognised training,” said Trish Ridley, Manager of Activ Pathways. “We applied for the Award because we were aware of our own achievements in this area and wanted recognition not only for our own team but for people with a disability. The application process was online and easy to manage with plenty of clear instructions. We were very proud to be involved in the Australian Training Awards and hope to be part of the awards again,” Trish said. Since 2009, Activ Pathways has delivered training to more than 5000 people, including 1600 living with disability with a completion rate of 97 per cent. Activ Pathways is the only disability enterprise in Australia to deliver the Certificate I in Leadership Development. Also available are the Certificate I in Transport and Logistics, Certificate I in Agrifoods, Certificate I in Business Certificate II in Horticulture and Certificate I in Manufacturing It also provides traineeships, offering more than 45 in 2014 such as school-based traineeships for the Certificate II in Community Services and Certificate III in Disability programs. There are 18 awards presented by the Australian Training Awards to individuals, businesses and registered training organisations. A majority of the awards are available by entry through state and territory training awards programs. Seven of the award categories are available by direct entry to the Australian Training Awards. Categories include: Individual • • • • • • • • • Lifetime Achievement Award* National Achievement Award* Australian School-based Apprentice of the Year Award Vocational Student of the Year Award Aboriginal and Torres Strait Islander Student of the Year Award Australian Apprentice (Trainee) of the Year Award Australian Apprentice of the Year Award VET Teacher/Trainer of the Year Award Excellence in Language, Literacy and Numeracy Practice Award* Business • • • • • Small Employer of the Year Award Employer of the Year Award Australian Apprenticeships - Employer Award* Disability Training - Employer Award* Industry Collaboration Award Registered Training Organisation • • • • Small Training Provider of the Year Award Large Training Provider of the Year Award International Training Provider of the Year Award** School Pathways to VET Award* * Applications for these awards are made directly to the Australian Training Awards. ** Applications for these awards are made directly to the Australian Training Awards except in Western Australia where applications must be made to the WA Training Awards. Find the Australian Training Awards on www.australiantrainingawards.gov.au 02 6240 8155 [email protected] April 2015 — Vol 24/1 linkmagazine 41 Link: Music This isn’t Disneyland There’s a new girl band in town and their catchy, thoughtprovoking tunes are set to have them following in the footsteps of the Spice Girls and Destiny’s Child. Anthea Skinner reports. The Sisters of Invention - Aimee, Annika, Caroline, Jacki and Michelle - are based in Adelaide, and all five members have learning disabilities. After singing together for three years, they have just released their first music video called This Isn’t Disneyland. The women first met while performing with Tutti Arts, Adelaide’s leading inclusive arts organisation. Tutti Arts began as a choir for people with intellectual disability in 1997 but has since grown to support both visual and performing artists with disability in integrated programs across Adelaide and rural South Australia. The Sisters of Invention is still managed and supported by Tutti Arts. This Isn’t Disneyland, directed by Katrina Lucas, aims to break down stereotypes about the lives of people with learning disabilities. Sick of being treated like child-like fairytale characters, the Sisters sing “This isn’t Disneyland, I’m not a novelty, this is as real as it gets”. In the video, the Sisters first appear dressed as Disney characters but then reject these idealised images of themselves, tearing off their costumes, clipping their fairy wings and chopping off Rupunzel’s locks, to reveal outfits more fitting to their true personalities. They go on to break, burn and destroy a range of soft toys, refusing to be cast in the role of children, instead donning sexy outfits and embracing symbols of their disabilities, like wheelchairs and prosthetic eyes. 42 linkonline.com.au While the message behind This Isn’t Disneyland is powerful, that is not reason enough to buy this song. The true strength behind the Sisters of Invention is the quality of their music. In an interview with The Daily Life, band member Annika said of the song, “The reason we wrote it was because someone told us we shouldn’t be recording our songs and should only be singing for school kids”. Well, they certainly proved their point, and have produced a memorable song, with crystal clear vocal lines that will leave you humming their tune for hours. The band have also garnered international acclaim, with This Isn’t Disneyland being featured on the BBC, screened at the United Nations Headquarters in New York and played on QANTAS inflight entertainment. The group doesn’t feel that their disabilities have held them back creatively. Indeed, for Annika and Aimee, their disabilities seem to have actually helped, rather than hindered their performances. Annika, who is blind and has a mild intellectual disability, has perfect pitch, allowing her to identify any note she hears. Aimee has Williams Syndrome, which causes hypermusicality and a heightened sensitivity to sound. This Isn’t Disneyland is the first song from the Sisters debut album, which will be released this year. The songs draw on the women’s life experiences and range from happy to heartbreaking. The Sisters of Invention are proving that their lives aren’t fairytales, and that their musical talent is a force to be reckoned with. Check out This Isn’t Disneyland on YouTube: www.youtube.com/ watch?v=fu800VYgyis or buy the single on iTunes: https://itunes.apple.com/ ca/album/this-isnt-disneyland-single/ id930259411. For more information on The Sisters of Invention, or other work by Tutti, visit www.tutti.org.au April 2015 — Vol 24/1 Link: People Chop to it Head to any agricultural show in Australia and there’s always a crowd watching the woodchopping. Show-goers young and old love to marvel at the strength, accuracy and speed of the competitors, as they reduce gigantic logs to kindling in a manner of minutes. However the excitement grows even stronger when 29-year-old Nick Fredriksen enters the ring. That’s because he’s the only one-arm amputee competing in woodchopping in Australia. “Competing against able-bodied axemen helps me to become a better axeman and to maintain my strength,” says Nick, who regularly competes in events across Australia and New Zealand. “Because I have one arm I need to work twice as hard when I compete against axemen with two arms. What I lack in strength I try to make up with accuracy.” For Nick, who lost his left arm in a hay bailing accident on the family farm at age eight, woodchopping is a family tradition. As a child he was determined to compete in woodchopping alongside his father and brother regardless of his disability, and spent years training to develop the strength and accuracy required of the sport. It’s an investment that appears to have paid off, with Nick winning his first ever handicap Standing Event in Christchurch in 2014, along with the Novice Woodchopping at the Maleny Show and the Queensland Axeman’s Association ‘Over All Novice Points’ trophy. He also racked up a world-first in the Two Board Tree event, becoming the first amputee axeman worldwide to compete in this challenging class, which sees the axeman climb a tree with the April 2015 — Vol 24/1 My goal is to become the fastest arm amputee axeman in the Guinness Book of World Records. aid of spring boards and chop off a log at the top. “I always set out to do my best when I compete and I aim for continual improvement,” he says. “My goal is to promote sporting opportunities for athletes with a disability, to become the fastest arm amputee axeman in the Guinness Book of World Records, and to gain sponsorship to help me to achieve my goals.” Nick is also an accomplished swimmer, having won five silver medals at the Australian Swimming Titles and broken countless national and state records, and works as a heavy machine operator with the aid of a prosthetic. This year Nick plans to compete in shows throughout Queensland, including the Brisbane Ekka, and to return to New Zealand. linkmagazine 43 Link: Opinion Is the NDIS sustainable? sites have very high levels of participant satisfaction. The National Disability Insurance Agency (NDIA) has the responsibility to manage the financial sustainability of the NDIS by adopting an insurance-based approach informed by actuarial analysis. Two questions emerge here: firstly, what is an insurance model and, secondly, why has such an approach been adopted? An insurance model is characterised by the following: 1. A defined benefit 2. A premium 3. Risk pooling 4. A long-term perspective, with an emphasis on claims management Dr Sachi Purcal, from the Macquarie University Centre for the Health Economy, reflects on the insurance-based approach adopted by the National Disability Insurance Agency and why the NDIS alone won’t improve quality of life for people with disability. Unlike any disability related program before it, the National Disability Insurance Scheme (NDIS) aims for a new way of funding individualised support for people with disability that involves more choice and control and a lifetime approach to a person's needs. Bruce Bonyhady, the NDIS Chairman, has stated the NDIS is laying the foundations for success through an approach that champions starting small, collecting data, confirming what works and then applying the lessons to the fully scaled-up scheme. At present the trial 44 linkonline.com.au 5. Dependent on consumer acceptance. Loosely, the NDIS has a premium to fund its costs through its $22 billion funding envelope. Risks are pooled nationwide to reduce the impact of disability costs on Australians. The NDIA adopts a long-term perspective, looking to ensure good outcomes for participants at reasonable costs. Within the framework of an appropriate governance structure, it does this by analysis of longitudinal actuarial data. The adoption of an insurance model is an unusual approach for an entitlements scheme - management of Medicare doesn't have such a responsibility. Why, then, has an insurance model been adopted for disability service provision? One reason is its lower cost and broad acceptance that the traditional rationed model adopted in the states and territories is unsustainable, with high costs and poor outcomes. Indeed, cost pressures in these systems can push them into a ‘death spiral’. In contrast, we have a rich history of the successful operation of the insurance model in numerous major personal injury schemes throughout the country. Its ultimate success, however, depends on widespread community acceptance - community belief in it having delivered good outcomes for participants at reasonable cost and better than under the traditional rationed approach. However, it is not only the NDIS, which looks after supports that will help people with disabilities achieve an ordinary valued life. Appropriate government investment in housing, transport, health, education and the physical environment, as promised under both the National Disability Agreement and the National Disability Strategy, also has to take place. Such investment is needed so people with disability can truly participate and be included in Australian society. Indeed, the financial sustainability of the NDIS requires it. Any expectation that the NDIS can fulfil these roles as well will send its costs spiralling and doom it to ultimate failure. It would be a cruel blow to have hopes raised by the promise of the NDIS, only to see them dashed by insufficient follow through in such infrastructure provision. The Macquarie University Centre for the Health Economy (MUCHE) investigates, analyses and reports on the Health Economy to provide stakeholders with reliable, independent and applied research that can be used to inform debate and assist decision-making and policy formulation. April 2015 — Vol 24/1 THE F3 CORPUS ® POWERFUL, MANEUVERABLE AND STABLE Experience it at permobil.com April 2015 — Vol 24/1 Emma Melissa Reyes Permobil user since 2003 linkmagazine 45 Link: Products Books & publications My Happy Sad Mummy (Jo Jo Publishing) Told through the eyes of a young girl living with a mother who has a mood disorder, My Happy Sad Mummy is a fantastic picture book that explains to children the impact on a parent of a major mental illness such as bipolar disorder. Drawing on her own experiences as a mum and someone who has experienced the emotional rollercoaster of mental illness, author Michelle Vasiliu has created a valuable resource not only for children, but parents, teachers and mental health workers. www.classic-jojo.com Accessible Melbourne (Lonely Planet) Discover Melbourne’s best wheelchairfriendly restaurants and shops, get active Accessible Melbourne with accessible sports, and enjoy spectacular scenery, food and wine along the Great Ocean Road. It includes user reviews and insider tips from a wide range of travellers to ensure those with mobility, hearing or vision impairment get the most out of a Melbourne holiday. Download your preferred version of this free e-book at www.lonelyplanet.com/accessible-melbourne Day trips Outdoor experiences Transport tips Evacuation of People with Disability (Self-published) Evacuating people with disability, safely and with suitable equipment, is just as important as ensuring buildings are accessible, according to disability access consultant Lee Wilson. The accessible building specialist has put together a 154-page guide on the topic, complete with templates for personal and group emergency evacuation plans. Evacuation of People with Disability & Emergent Limitations: Considerations for Safer Buildings and Efficient Evacuations is available as a free PDF download from www.leewilson.com. au. Accessible formats will be available soon. 46 linkonline.com.au Medikidz Explain Spinal Cord Injuries The SpineCare Foundation, in collaboration with Medikidz, has launched a world-first educational comic book designed to help Australian healthcare professionals explain complex medical information about spinal cord injuries to children. Written by the Medikidz doctors and reviewed by Australian paediatric spinal cord injury specialists from leading Sydney hospitals, the book features three real Australian children who live with spinal conditions. A ‘Meditotz Explain Spinal Cord Injuries’ version is also available. The free books can be downloaded at www.northcott.com.au/spinecare or in hard copy by emailing [email protected] Rebel Yell Updated (Jetlaunch) Rebel Yell UPDATED is a classic revisited. True to the original 2003 publication, it remains witty and entertaining, beautifully simple, and humble in its message delivery. Author Johnny Mackay says the book is ideal for people exploring the concepts of self-reflection and who are increasingly challenged by the question ‘is there more to life?’. Included in the updated version are extensions which relate to the history of the original publication and an introduction as to the spiritual unfolding with which the journey began. Available from www.amazon.com or www.johnnymackay.moonfruit.com Love is All There Is (Self-published) Author Jewels Smith has written a touching and poignant tribute to her daughter, Sienna, who passed away recently at the age of 12. Described as ‘Angel Girl’, Jewels reflects on her daughter’s sometimes difficult journey and the things she learned from her brave daughter as she faced formidable challenges, including the importance of love, compassion, caring and kindness. Available from www.facebook.com/Lov eisallthereisSiennastory/?ref=bookmarks April 2015 — Vol 24/1 7 May 2015 Royal International Convention Centre, RNA Showgrounds Brisbane 13-14 May 2015 Rosehill Racecourse, Sydney 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 and their family, friends and carers. FREE CLINICAL PROGRAM • FREE TO ATTEND April 2015 — Vol 24/1 For more information phone 1300 789 845 or visit www.atsaindependentlivingexpo.com.au linkmagazine 47 We have a simple philosophy at Orana… We exist to provide support for people living with a disability. We encourage, we train and most importantly we provide real life choices. With services in metropolitan and regional South Australia, we ensure support is tailored towards personalised service. With a diverse range of employment and accommodation options, Orana is committed to excellence through creating independence for people living with a disability. To find out more about Orana and how we support South Australian’s with a disability, visit our website www.oranaonline.com.au or phone us on (08) 8375 2000 Our Commitment to Environmental Management Outstanding quality printers for all your business needs. 3()& ĞƌƚŶŽ͘>ϮͬϬϬϮϯ͘ϮϬϭϭ h Ryan Ebe Doctor ling, of Chir opractic ing w excit All ne rmAt! 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MAY 2015 APRIL 2015 Grey Matters National Conference 1 April,Hindmarsh, SA www.connections.edu.au/news/ Launch of Hearing Voices Queensland network 8 and 27 April, various Qld locations www.nds.org.au/events/1424386903 MS Melbourne Cycle (Annual multiple sclerosis fundraiser) 19 April; Melbourne www.msmelbournecycle.org.au/ about/default.asp JUNE 2015 The Wings for Life World Run (Spinal Cord Research) 3 May Melbourne www.wingsforlifeworldrun.com/au/ en/melbourne/ National Tenpin Bowling Championship for Persons with a Disability 3–13 June, Brisbane, Qld www.tenpin.org.au ATSA Independent Living Expo 7 May, Brisbane, Qld www.atsaindependentlivingexpo. com.au Steam Rally Echuca (Exhibition with disability access) 6–7 June, Echuca, Vic www.visitvictoria.com/regions/TheMurray/Events/Family/Steam-RallyEchuca.aspx NDS Disability at Work Conference 18–19 May, Melbourne, Vic www.nds.org.au/events/1420517984 Subscribe NOW! Name: 1 year 2 years Individual $45 $78 Concession $25 $38 $104 $146 Address: $60 $100 Address: $24 $34 Multi-pack (3) International (aud) Organisation: Link Audio Audio CD Total $ Suburb: Phone $ Enclosed is a cheque/money order for $ Please debit my credit card State: Visa Email made out to SA Group Enterprises Inc. Mastercard Card number: Expiry date: CVV number: Postcode: Cardholder’s name: Are you a (you may tick more than one box): person with a disability disability organisation carer/family member government organisation health worker other, please specify Direct Debit Account Name Bank Branch BSB Account SA Group Enterprises Bendigo Bank Castle Plaza 633-000 150 333 466 Subscriptions manager Link Magazine Reply Paid 83868 Unit 22, 70-88 Laffer Drive Bedford Park SA 5042 e: [email protected] | p: 08 8201 3223 | f: 08 8201 3238 | ABN: 40 005 498 775 APRIL-2015 Tax Invoice all prices include gst Link Magazine Please subscribe me to the printed version of Link Disability Magazine Link: Opinion Sisyphus and now for all eternity to roll a huge boulder up a mountain. Just as he reached the top, the rock would roll away to the bottom and he would have to begin anew. In so many ways life with a disability is a constant Sisyphean challenge. Just as things appear to be looking good some part of us breaks down and needs repair or a new part requires money spent on it or the wheelchair has a double flat. Link’s resident columnist Peter Coulter likens the challenges of living with a disability to those faced in Greek Mythology. I think that many disabled people would sympathise with poor old Sisyphus. He somehow displeased the Gods of Ancient Greece and was condemned I now read in New Scientist magazine an article titled ‘How Long is Now?’ It appears a metaphysical question but neuroscientists and psychologists believe they now have an answer. Using the argument that we live in the present, here and now, they argue we must necessarily experience time as a series of ‘nows’. But how long is now? For the brain to be able to distinguish events, recognise them and store them as memories, without them becoming indistinguishable from one another, they must be separated in time. In the case of sound this must be in the order of two milliseconds but vision PACK it up and GO! Portable people movers for travellers who need transport when they reach their destination. By car or train, boat or plane; fold them up and you’re ready to go. Literider PC • Entry level, lightweight powerchair • 5 easy to unclip sections • Compact and simple to use • Suitable for indoor or outdoor 50 linkonline.com.au requires some tens of milliseconds. For the brain not to become overwhelmed this creates a timeframe or reference and we live in a series of nows, each of which seems to have a duration of two to three seconds. Sisyphus had a ‘how long is now’ revelation or moment at the bottom of his mountain and again at the top, these two points being his epiphany - or start and end. Given my disability, the now moments are constant so long as my eyes are open. I have a severe visual disability, which limits my field of vision meaning that I cannot see both sides of an object at once. This makes negotiating any traffic hazardous and precludes the privilege of driving a car. I am conscious at every moment of the necessity of calculating my position in space relative to both animate and inanimate objects. This is an innate behaviour for most people but, for me, is an intellectual exercise to be engaged 100 per cent of the time and is very taxing. It makes my ‘now’ moments fractions of a second all day, every day. The luggie • America’s top selling portable scooter • Folds up in seconds • Li-ion battery pack • Carries up to 140kg The Buzz 3 & 4 • Unclips with the flick of a finger • Easy to lift into a car boot or caravan • Large or small battery options • Great value for money, from $1490 VISIT scootersaus.com.au or CALL 1300 622 633 April 2015 — Vol 24/1 breakthroughs Fruit linked to depression Women who eat fewer than two serves of fruit a day face a greater risk of developing depression, according to research conducted at the University of Queensland. Professor Gita Mishra, from the university’s School of Population Health, said the findings of a six-year study of more than 6000 Australian women revealed a clear link between fruit consumption and the development of depressive symptoms. “We found that women who ate at least two servings of fruit a day were less likely to suffer from depression than women who ate fewer servings, even after taking into account other factors such as smoking, alcohol, body mass index, physical activity, marital status and education,” Professor Mishra said. “We also found that eating two or more servings of fruit a day protected women from developing depression in the future.” Professor Mishra said researchers had not found a link between vegetable intake and depression. She said the findings, published in the European Journal of Clinical Nutrition, highlighted the importance of a diet high in fruit to avoid the development of depression in middle age. Australian boy first in world to receive artificial pancreas Australian boy Xavier Hames, 4, has become the first patient in the world to receive breakthrough technology to help manage type 1 diabetes. The Juvenile Diabetes Research Foundation (JDRF) funded the trial at Perth’s Princess Margaret Hospital for Children (PMH), in conjunction with a network of hospitals across Australia. Under the trial, an insulin pump system mimics the biological function of the pancreas to predict low glucose levels and stop insulin delivery. This avoids the serious consequences of low glucose such as coma, seizure and potential death. “This is an instrumental development in the management of type 1 diabetes,” said Professor Tim Jones, from PMH. “It’s the first time we’ve been able to offer patients a management tool that can prevent hypoglycaemia. “The majority of hypoglycaemic attacks occur at night when a person is asleep and they might not be able to react April 2015 — Vol 24/1 or recognise the attack. This device can predict hypoglycaemia before it happens and stop insulin delivery before a predicted event.” Xavier was diagnosed with diabetes when he was 22 months. He has been receiving regular treatment at PMH since his diagnosis and will be the first child, outside of the clinical trials, to use the new device. Xavier’s mother Naomi said that the pump system was a breakthrough in Xavier’s care and for others suffering with the disease worldwide. “Having the pump gives us the reassurance that Xavier is safe when we are all asleep at night, and during the day,” she said. “It is also waterproof meaning that he can enjoy water sports and activities as much as his friends and family. We are so delighted to be part of this milestone event and to be receiving the very best treatment for our little boy.” linkmagazine 51 Fun run More than 1000 people gathered at Albert Park Lake in Melbourne on February 15 for the annual Muscular Dystrophy Association ‘Run for Strength’. The event raises funds for MDA research programs and increases awareness of this life-threatening condition. 3 1. Seven News Melbourne journalist Kristy Mayr and Muscular Dystrophy Australia executive director Boris Struk. 2. Ozi Akyildiz and family, one of the founders of the event. 1 2 Disability support conference 3. The event attracted a huge crowd. Representatives from across Queensland attended the inaugural Disability Support Workers (DSW) Conference in Brisbane on February 24 and 25. Local and international speakers, including UK disability expert Mary Johnson, addressed delegates on how to prepare for the launch of the NDIS in Queensland in mid-2016. 3 1. Mary Johnson, Disability Practitioner from the UK, presented at the conference. 1 52 linkonline.com.au 2 2. Staff from Multicap and CPL welcoming delegates. 3. Some of the delegates at the conference. April 2015 — Vol 24/1 ™ and ® are trade marks and registered trade marks of Telstra Corporation Limited ABN 33 051 775 556
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