Accord Summer 2019

Summer 2019

Against the odds a story of triumph years in the making

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CONTENTS 02 03 04 06 08

From the CEO From the President News Fundraising Against the Odds

12 14 16 18 21

eople: Daniel da Silva P Support when you need it most Daily living: Adaptive clothing Policy and advocacy Regional round up

24 Technology 26 Information & resources 28 Calendar

Patron: His Excellency General the Honourable Sir Peter Cosgrove AK MC (Retd), Governor-General of the Commonwealth of Australia accord is a publication of Spinal Cord Injuries Australia ACN 001 263 734 Incorporated in NSW Head office: 1 Jennifer Street, Little Bay NSW 2036

Sub Editors Rosemary Gillespie Glynis Skepper

Phone: 1800 819 775 Fax: 02 9661 9598 Email: info@scia.org.au Website: www.scia.org.au

Designer & Editorial Manager Shauna Milani Advertising accordadvertising@scia.org.au

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

FROM THE CEO

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s I’m writing this article I’m reflecting on 2018 and my transition into my new role as CEO. The past year saw SCIA membership grow to over 2000 members while the number of customer interactions increased to over 10,000, so I thought it timely to share with you some of our recent achievements and how these will impact our work in 2019.

We’ve grown our Plan Management and Support Coordination services and I’m pleased to report we’re now supporting over 400 clients. We provided over 24,000 hours of exercise therapy through our highly effective NeuroMoves program and demand for our services in this important area continues to increase. Nearly 200 clients in the community and in hospital spinal units have benefitted from our Peer Support Service, who have also been instrumental in advocating in over 70 client cases. Additionally, the Advocacy Team has been involved in a number of systemic advocacy issues including attending inquiries and supporting the Stand By Me campaign to ensure that the NSW Government continues to fund critical advocacy services.

2018 also saw the introduction of several new initiatives, including the purchase of a new Perth property under our CHOICES program which offers transitional accommodation for newly injured clients and their families. We’ve also been fortunate to be gifted a property in the Sydney suburb of Belmore from the St George Association for People with Physical Disabilities – a very big thank you to that organisation for their generosity. Ability Advocacy, a disability and support services organisation from the Northern Rivers Region of NSW, also chose SCIA as a merger partner; a partnership that will begin in January.

More information on each of these exciting initiatives can be found in this edition of accord.

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We’re also currently engaged in enhancing the Peer Support Service across NSW, building a new online forum for people with spinal cord injuries and their families, and redesigning the SCIA website. You’ll be able to read more about progress on each of these projects as 2019 continues.

My transition to SCIA has been an extremely positive one. I’m very much looking forward to a busy year ahead; working on current initiatives whilst always seeking out new opportunities to ensure our organisation can fully deliver on its mission and vision. ▪

FROM THE PRESIDENT

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his past year has seen several changes on SCIA’s Board of Directors.

As always, we remain keen to hear all feedback and comments from SCIA members to facilitate our direction For those who may not be aware, the and maintain our focus. We are always Board of Directors is comprised of up mindful that we are a member-based to 13 individuals, the majority of whom organisation and remain totally must have a severe disability. Directors committed to advancing the health are chosen by being elected, invited or and well-being of those living with a appointed to ensure there is a good balance spinal cord injury. ▪ of talents, ideas and knowledge around the board table. In this way we hope to achieve a Board whose focus and direction is conducive to furthering SCIA’s mission and achieving our aims.

We were saddened to hear this year of Brad O’Hara’s and Mark McCauley’s intentions to retire from the Board. Brad has spent many years volunteering his time for SCIA and will be sorely missed, and although Mark’s time on the Board was not as lengthy, his commitment and legal expertise was highly valued. We are indebted to both men and wish them well in their future endeavours.

After a recent nomination process, the Board now welcomes Paul Crake and Robert Vander Kraats as new directors, and acknowledges the re-election of Brett Stevenson. Paul, Robert and Brett have all been, or are, directors in their own businesses and come with a wide range of skills and interests. All three men also live their lives with a disability.

Last but not least, after a recent Board skills assessment, we identified areas of expertise where we were lacking and set about sourcing directors to fill this gap.

A successful advertising and interviewing process enabled us to invite two new directors to join the Board as of January 2019.

It’s exciting to see in the new year with such a diverse yet complementary Board of Directors. Although saddened by departures we welcome the fresh faces and look forward to working with the new team.

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NEWS

Marathon on Ice for a Cure Tommy Little, comedian, presenter and all-round legend has completed the biggest challenge of his life in aid of Spinal Cord Injuries Australia (SCIA) and the continuing search for a cure for spinal cord injury (SCI).

After a friend suffered an SCI, Tommy was spurred on to do something that would make a lasting impact. Not one to do things by halves, he and three close friends decided to raise money by taking part in one of the world’s toughest races – the 42.2 km Antarctic Ice Marathon.

On 13 December 2018, after completing a gruelling training schedule, Tommy

battled sub-zero conditions to complete the race in the amazing time of 5 hours and 18 minutes, landing him in 12th place. We are so proud of him and his team for this incredible achievement.

What’s more, Tommy absolutely smashed his fundraising target, raising in excess of $110,000 for SCI research. SCIA cannot thank Tommy enough, and indeed all those who supported him on this journey. Not only did he help raise vital funds, Tommy’s efforts generated much needed awareness for people with an SCI. We hope his amazing performance will be the catalyst for even more great things to come.

SCIA’s Perth accessible house to open Over the last eighteen months SCIA has secured enough funding to purchase a property in the Perth suburb of Floreat.

This home will be the site of SCIA’s accommodation service in Western Australia for people living with spinal cord injury (SCI).

To be eligible, clients need to:

This fully accessible home will provide a unique rehabilitation experience where users can re-learn life skills and regain independence, outside the hospital support system.

• H ave someone over the age of 18 accompany them for the duration of their stay • Be a member of SCIA.

The program has been specifically designed to aid in transition from the hospital spinal unit to a client’s home environment.

Accessibility modifications for the new home are currently underway and we anticipate welcoming our first clients after an official opening in the first half of 2019.

Tommy Little completing the Antarctic Ice Marathon

Taboo greenlit for 2019

• Have a medically diagnosed SCI • B e a current inpatient at a registered medical facility • H ave clearance for temporary leave from their treating health professionals

SCIA’s new accessible house in Perth.

Cast of the Taboo pilot episode.

After rave reviews on Channel 10’s 2018 Pilot Week, television program Taboo has been selected to be made into a series in 2019.

Taboo showcases a no-holds-barred approach to people sharing their stories about living with a disability and finding humour in very human situations.

The premise of this one-of-a-kind show is simple. Four people with various disabilities live with stand-up comedian, Harley Breen, for a week, each giving him a unique insight into the ins and outs of their everyday lives. It’s then Harley’s job to use that material to write and perform a show in front of participants, their friends and family.

Stories that wouldn’t ordinarily be shared with such a wide audience makes Taboo a ground-breaking series for Australian television and people living with a disability. It’s a great way to help break down barriers and promote inclusivity in everyday society.

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NEWS

SCIA merges with northern NSW advocacy group

Belmore property gift for SCIA

In early 2017, the disability sector was experiencing the introduction of the NDIS, creating many new service provision models, and an unknown funding path for advocacy in general.

Ability Advocacy – a disability services and support organisation in Alstonville, NSW – began looking for an appropriate partner and identified SCIA as an ideal fit.

The St George Association for People with Physical Disabilities has generously gifted SCIA a household property in the Sydney suburb of Belmore.

In January, the two organisations officially merged to continue to deliver high quality advocacy services across northern NSW. SCIA would like to extend a warm welcome to the staff of Ability Advocacy who are all highly experienced and passionate individuals dedicated to providing advocacy, information and training to enable people with disability to promote and exercise their rights.

allowing us to have a complete focus on our clients in a rapidly changing sector,” said Doug Hollingworth of Ability Advocacy.

SCIA already provides support coordination, plan management and a NeuroMoves program in the Northern Rivers Region, so Dianne Lucas, CEO of SCIA, is also pleased about the merger.

“Our organisation has been welcomed “This is an exciting time for SCIA to with open arms by SCIA. It’s a wonderful offer an advocacy service to people with way to start another exciting chapter, disability within this area,” she said.

NDIS updates SCIA working with NDIS to review Intermediary Frameworks The NDIS is currently reviewing the Intermediary Frameworks which will apply to Support Coordination and Plan Management. These frameworks are the result of an identified lack of clarity within the sector relating to the roles and responsibilities of Intermediaries.

The frameworks will provide clear guidelines for service providers offering support in these areas and will likely result in changes to the types of functions Intermediaries perform.

SCIA is one of the organisations involved in this consultation process with the NDIS, and we expect implementation to be a three-month process which will begin in early 2019.

rolled out in the last remaining regions and age groups across Victoria, Tasmania and Queensland on 1 January.

People in the Goulburn, Mallee and Outer Gippsland areas in Victoria, together with Moreton Bay and the Sunshine Coast in Queensland, are now able to access the Scheme for the first time. Additionally, people in Tasmania aged between 50 and 64 can now begin to access the NDIS. The remaining areas in Western Australia will progressively join the Scheme until 2020.

SCIA’s Support Coordination team can assist you with your NDIS planning. We can identify and coordinate supports, resolve points of crisis, provide mentoring and peer support, and address any issues that arise during the planning process.

NDIS available in more areas from 1 January 2019

SCI is a unique disability that has complexities not shared by other disabilities. Where possible, we’re working to educate the NDIS to improve their knowledge and understanding of the impact SCI has on your life.

The NDIS is now available to eligible Australians in all states and territories except Western Australia. The Scheme

For assistance with your NDIS Plan, please feel free to contact our Customer Connect team on 1800 819 775.

Before making the decision to wind down its activities, the Association (established in 1953) provided adults living with a physical disability a range of services, including social and peer support; accommodation and recreation facilities; and welfare, counselling and information services.

The SCIA Board and management team are now considering options for making best use of this wonderful donation.

Higher prices to support people with complex needs In December 2018 the NDIS announced increased pricing support for people with complex needs, recognising that this group of individuals require higher levels of skilled support in their NDIS plan.

The Hon Paul Fletcher MP advised that the pricing changes will convert a twotiered pricing system for self-care, social and recreational support to a three-tiered system. The additional third tier of care for very complex needs support will attract a new loading of 10.3 per cent.

At this stage, the exact criteria for “very complex needs” are yet to be set. However, given the complexities associated with spinal cord injury (SCI) – particularly for self-care – Spinal Cord Injuries Australia (SCIA) is hopeful that our clients will benefit from this increase.

Further details on these measures can be found at www.ndis.gov.au or by contacting SCIA’s Customer Connect team on 1800 819 775. ■ www.scia.org.au 5

FUNDRAISING

Star fundraisers

Wheels in Motion – Move with Us

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s always, we’ve had some amazing results for SCIA from our supporters over the past few months, including the efforts of Mark and Georgie.

After witnessing several friends suffer spinal cord injuries (SCI) from cycling accidents, Mark set himself the task of raising money for SCIA by participating in the Bowral Classic. He spent a whole day in the saddle, cycling a gruelling 175km in the Southern Highlands, and raised nearly $400!

Georgie challenged herself to swim 100km over the month of October and raised more than $600! We are so impressed with her determination and drive!

We count ourselves very lucky to have such great supporters doing all they can for SCIA. We really appreciate all the hard work and dedication they put into fundraising for us and the important work we do. If you’re inspired to do something to raise much needed funds for SCIA, please contact info@scia.org.au or call 1800 819 775.

Georgie at the pool.

If you feel good when you read our star fundraiser stories, why not become one yourself? Contact us on 1800 819 775 or email info@ scia.org.au and get involved today!

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he team behind Wheels in Motion have done it again, organising yet another amazing fundraiser – this time in the backstreets of Melbourne.

Tickets to Move with Us were hot property and nearly 600 people attended for an afternoon of great live music and fun in the sun. Move with Us is the Wheels in Motion flagship summer fundraising event and each year it just keeps getting bigger and better! A huge thank you to all those who turned out in support and who helped raise in excess of $75,000!

The Wheels in Motion team have been big supporters of SCIA and our NeuroMoves program for a number of

years now. Set up by a group of five high school friends in 2016, they work tirelessly to raise funds to improve the quality of life for young Australians living with a spinal cord injury (SCI).

Wheels in Motion have gone from strength to strength and last year not only organised their biggest event yet, but launched their first media campaign called #notstandingforit – a fantastic initiative aimed at shifting how we think about disability.

You can watch their great video and read more about the inspiring work Wheels in Motion do on their website at www.wheelsinmotion.org.au ■

Do something amazing this year and join team SCIA Whether it be the SMH Half Marathon, City2Surf or Tough Mudder – run, swim or cycle your way towards helping us overcome barriers to independence for people with spinal cord injuries.

Visit scia.org.au/team-scia/ for some inspiration and get involved this year. scia.org.au | 1800 819 775 | teamscia@scia.org.au

COVER

Christine with her daughter Rebecca participating in the 2018 Darrel Chapman Fun Run.

by Susan Wood

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t was a truly transformational moment when Christine Bermingham stood upright for the first time after living for 18 years as a quadriplegic. Told for so long that it was unlikely she would ever stand, let alone walk, again she simply couldn’t believe it. Yet, she stood up.

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changed. “I was a crazy person. Completely out of character. I told my 16-year-old daughter that I had to iron her stockings for school and my fourteen-year-old son that he owed me $200.”

It was a Saturday morning in early 2000 when, whilst enjoying a weekly netball game, Christine instinctively felt something was wrong. She didn’t know it then, but an undiagnosed epidural abscess was playing havoc on her spine. Stability in her legs was the first thing to go, rapidly followed by an inability to stand properly. Just weeks later, Christine was totally paralysed from her chest down.

Finding out exactly what was happening was a nightmare. As visit to the doctor and numerous tests proved inconclusive, Christine’s condition was originally diagnosed as a sports injury and managed with painkillers. But one night just before Easter 2000, things took a turn for the worse. Unable to move at all, Christine was carried to bed by her husband, Barry, and her son, David. When daughter Sarah came home, an ambulance rushed Christine to nearby Lismore Hospital.

The destructive abscess affected Christine’s mental stability, too, leaving her completely

It was sheer chance that a visiting specialist put forward a provisional diagnosis of an epidural

COVER abscess. Christine’s situation quickly became desperate and preparations for an emergency helicopter flight to Brisbane’s Princess Alexandra Hospital were swiftly made.

“It was pretty awful,” recalls Christine. “The specialist and the neurosurgeon didn’t think I would make it.”

Despite an emergency corpectomy and fusion to remove the abscess, the infection had already done its damage to Christine’s spine.

Transition to life as a C7 incomplete quadriplegic was made slightly easier by Barry’s work as an education consultant teaching school-aged children about disabilities and Christine’s own work in the brain injury unit at Lismore Hospital.

“It’s funny, but part of my job was taking able bodied support workers out in wheelchairs to experience what it’s like,” she says. “I didn’t know then that I was actually giving myself a bit of background.”

For Christine, post-discharge rehabilitation and upkeep was limited. After returning home in August 2000, her rehabilitation included four months of hydrotherapy which saw her core muscles improve. Other options were explored, including five Medicare-funded, in-home sessions with a physiotherapist, but as Christine’s home wasn’t equipped to deal with the visits, it was difficult.

“I found it really hard because I was using makeshift equipment around the house instead of being able to go somewhere and use the proper equipment. There weren’t services available in Lismore. No backup. I could feel sensation, but I couldn’t do anything about it,” says Christine.

NeuroMoves Lismore was set up in response to a need for greater services for people with spinal cord injury (SCI) in regional Australia and now means that many people needing specialist healthcare no longer need to travel to Sydney or Brisbane.

An initial NeuroMoves assessment covers the full spectrum of an individual’s medical history, their injury and an objective assessment of their exercise record and their goals. By the time Christine attended an SCIA NeuroMoves information day in 2016, what little she’d been able to achieve wasn’t enough anymore. She was physically in decline.

Sam Mitchell, an exercise physiologist at NeuroMoves Lismore, assessed Christine that first day and has been with her throughout her journey. “When someone comes in for an initial assessment, you’re constantly trying to gauge their range of movement. In Christine’s case, I

Christine at NeuroMoves Lismore.

was interested in her range of motion and the compensation strategies she uses.”

Christine thinks back to that assessment day.

Despite being unable to transfer, she was still able to get herself onto the parallel bars. “I thought I was pretty good, but I don’t think Sam thought it was anything special!”, she laughs.

Being functionally strong and be able to pick herself up off the ground became Christine’s goal. And, when Sam and the Lismore team created a weekly plan including one hour of functional electrical stimulation and two hours of individualised therapy, Christine really began to make progress.

In February, after five months with NeuroMoves, Christine’s hard work paid off. Not only could she stand up with only her hands as support, she’d gained the ability to lock and unlock her knees.

Fellow NeuroMoves exercise physiologist Kate Schaefer had also been working with Christine.

Practising standing on a low bench, and with enough stretching and high-intensity, repetitive training, the team in Lismore were able to encourage her body to move again.

By April, with her legs supported, Christine took her first steps in 18 years. With her family around her to witness such an important moment together, we were privileged to share her latest achievement with our Facebook and Instagram followers to an overwhelmingly positive response.

Christine recalls her journey from being extremely active to becoming completely paralysed and says being told she’d never walk www.scia.org.au

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COVER ◀ continued from page 9 or stand again was difficult to cope with both physically and emotionally.

“I could get as far mustering the strength to get dressed at night but couldn’t do anything around the house or live independently. The only way to describe it is to say that I was just existing.”

For Sam at NeuroMoves Lismore, Christine is a unique case in terms of how well she’s progressed.

“It’s very easy for people to say no instead of opening up to what could happen. You never really know what sort of function and recovery people have,” he says. “Christine was 18 years post injury.

Her amazing progress today goes to show how beneficial it would have been for her if she’d had access to it straight away.”

Shortly after standing for the first time, Christine excitedly recalls the turning point when she knew things were looking brighter. “I was outside on our beautiful timber deck hanging out the washing when I put my foot down on the wooden boards and I burnt myself. I could feel sensation – it was just incredible!”

In October, after working tirelessly on her core support, and just over a year since joining NeuroMoves, Christine reached another milestone when she walked on the parallel bars unassisted.

The NeuroMoves Lismore team has had to significantly adapt Christine’s program to match her progress, from initially focusing on trunk and core control to standing and weight bearing with more support.

Longer term, Sam would like to see Christine focus more on walking. What used to be assisted walking with two people on parallel bars has now progressed to her using a four-arm support frame requiring minimal assistance.

Because Christine’s progress has been shared across SCIA’s social media, the enormous response has had a lasting effect on her regional town.

“We were at a farewell and people we hadn’t seen for ages said they saw my video – even people we aren’t friends with on Facebook. One mother even tracked me down at the supermarket and asked me about NeuroMoves for her son. I haven’t stopped talking about it!”

Regaining her strength and independence encouraged Christine to participate for the first time in the 2018 Darrel Chapman Fun Run in Lismore. Although she needed some assistance up hills, it was a great chance for her to show the community just how far she’s come.

Back at NeuroMoves Lismore, Sam emphasises that milestones don’t have to be big to be great.

“Working with our clients, you never try to put

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Christine with her family, who have all been incredibly supportive throughout the last 18 years.

limits on anyone, but it’s surprising how people progress and what it is that triggers that into action. Small changes have such a big effect on our clients and on us as therapists, too.”

Christine admits that the darkest days after her SCI left her feeling helpless. She resigned herself to a life that was limited because she was told she wouldn’t be able to improve. Today, things couldn’t be more different. Every now and then Christine looks at the video of herself walking again for the first time. “I can’t believe what I see,” she says. “I still think, ‘I did that? That’s not me!’” ■

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PEOPLE

Daniel da Silva

Any Boat charts a course to success Being diagnosed with a rare disorder may have affected his physical mobility but "being told I can't do something doesn't exist in my head," says Daniel da Silva.

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n 1988, Daniel da Silva was once a typical, energetic 10-year-old. Enjoying life to the fullest and following in his rugby-loving family’s footsteps, he started noticing the strangest thing – his left hand hurt whenever he sneezed. Initially, his parents were unconcerned. However, when it didn’t go away they took him to see a doctor.

Fortunately, MRIs had recently been introduced and Daniel’s doctor suggested they used the new technology to have a deeper look at what could be causing his pain.

What the MRI revealed ultimately saved Daniel from becoming a quadriplegic. The scan clearly showed two large cysts filled with fluid, confirming a diagnosis of Syringomyelia – a rare disorder in which cysts form within the spinal cord. Over time, these cysts had become so enlarged that they were placing pressure on Daniel’s spinal cord, causing the increasing pain and weakness in his left hand.

PEOPLE

Says Daniel, “A few days after the diagnosis, Professor Michael Besser performed lifesaving surgery to drain the bottom cyst in my spine which he thought was being filled by the top cyst. For a 10-year-old this was pretty traumatic. Unfortunately, just a few months later we found out that the top cyst hadn’t been draining into the bottom cyst and was still filling up with fluid, so I underwent surgery again and a few more times after that.

“Before this happened, I was a young, avid rugby player, following in the footsteps of my grandfather and great uncle, who had both played for the Wallabies. It was absolutely heartbreaking to be told that I wasn’t allowed to play anymore. In fact, I wasn’t allowed to play in any contact sport from thereon in.”

Daniel underwent several more surgeries during his young teens. At 13, an operation released pressure at the base of his brain and he also had had further surgeries to straighten the effects of scoliosis on his spine.

As the years went on, the pain in Daniel’s hand increased, and he began to lose sensation. At 25, and unable to manage his symptoms any longer, a dynamic MRI was conducted. Doctors discovered that Daniel’s spinal cord had tethered and advised him that an extremely risky operation could decrease his pain. But there was a 5 per cent chance something could go wrong.

“I was losing more and more feeling in my hand, and at last decided to have the operation. But afterwards my hand was much worse than before. The operation was a success in that my spinal cord was untethered, but to this day, I can barely use my hand. I feel pain in my hand, but I don’t feel sensation.”

Daniel da Silva receiving an award at the 2017 North Eastern Sydney Regional Business Awards.

“You put your heart and soul into your business and winning such a prestigious award gives you validation. It really lets you know that the team are doing great things and that your vision is coming together.”

Having a spinal cord condition himself, Daniel is particularly passionate about making Sydney Harbour accessible to everyone, and amongst his fleet are several vessels accessible to wheelchair users. He’s also unequivocal in his advice to anyone who has experienced a spinal cord injury.

“Your life is what you choose it to be. It’s up to you to go out there and make things happen. Believe in yourself, follow your passion and choose your path.” ■

Daniel’s motto throughout his life has always been, “Being told I can’t do something doesn’t exist in my head.” So, it was with true strength of will that he followed his passion of sailing, eventually going on to establish his own boat chartering business, Any Boat.

Daniel’s dogged persistence paid off when, in 2017, he won the Small Business Excellence Award in the North Eastern Sydney Regional Business Awards. He was also a finalist in the hotly-contested Business Leader category.

“I was extremely proud to have even made the finals and Small Business Excellence is the big one, so to be named the winner is nothing short of outstanding in my eyes,” said Daniel. www.scia.org.au

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PEER SUPPORT

Lived experience support when you need it most

by Michelle Kearney

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eing told that you have a spinal cord injury (SCI) is devastating. The road to recovery can feel like an everlasting emotional rollercoaster which people without such an injury cannot even begin to imagine. And, while information from medical experts is great, sometimes the best help comes from those who have lived, survived and continue to thrive despite such a life-changing experience.

The journey to physical and emotional recovery can often feel very lonely, and this is where peers can provide real life skills to help you rediscover your new “normal”.

Spinal Cord Injuries Australia’s friendly Peer Support team work in the spinal units of Sydney hospitals, and in regional areas of NSW. They are there from the very beginning, to support you, your family and friends.

Everyone’s journey is different, and the team work with you on what you need, when you need it; in hospital, rehab and even when you’re back living in your own community. Peer Support focus on helping people with an SCI to regain their independence – whatever that looks like for them – so they can participate in their community as they would like.

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Peer Support team members also encourage you to face challenges head on and solve them.

They’re there to help you to achieve your goals, and to exceed any “limits”.

From information and education sessions, to workshops and community social events, our Peer Support team share their lived experience on a range of practical topics such as wheelchair skills, learning to drive, employment, relationships, travel (from catching public transport to embarking on an overseas trip) and everything in between. They, more than anyone, can understand how daunting the future may feel and can be there for you, even if it’s just to listen.

So whether you’re at the start of your journey, a few years in, or have been living with an SCI for some time, our team are out and about in the community, ensuring you have access to the latest information on new equipment and assistive technology, as well as details of products and services that may be of use to you. Whether this is accessing care, modifying your home or finding out the best transport options for you, the team can link up with other organisations and share their combined knowledge to support you in positive ways. ■

PEER SUPPORT

Meet the Peer Support team

Rob became an incomplete T1-T5 paraplegic after the surgical removal of a spinal cord tumour in 2008.

Through sheer determination (and lots and lots of physiotherapy), he was able to get back on his feet and, with the aid of electronic orthotics and a pair of crutches, he is now able to stand and walk again.

He has a passion for swimming and aims to get in the water every week, in between driving his kids to and from school and enjoying lots of other typical fatherly duties.

Rob leads the Peer Support team and sees his role as a way to give back after his rehabilitation; to thank those who helped him during his recovery.

Branka sustained a T10 incomplete SCI as a pillion passenger on a motorbike more than 25 years ago.

Emily sustained a C4/5 complete SCI whilst snowboarding in Vermont, USA, in 2012. Despite her accident, Emily returned to university and is soon to complete a Master of Social Work. She loves travelling and enjoys kayaking with her boyfriend and catching up with friends over margaritas at weekends.

Not letting it stop her one bit, immediately after her injury Branka graduated from a Bachelor of Commerce and later completed a Graduate Diploma in Counselling.

Before commencing work with SCIA, she gained valuable experience working in SCI prevention, as well as dealing with “at risk” youth through her work in health services.

Branka has a real passion for both travel and sport, however, she freely admits that her greatest joy has been becoming a mother to young Xavier, now aged five and a half.

In 2000, Jess sustained an incomplete C6-T3 walking quad injury after a motor vehicle accident with her sister.

Since her injury, Jess has become a silver medallist whilst competing for the Australia Junior World Championships for wheelchair basketball. She’s also enjoyed playing at senior level.

Jess loves to travel, and recently spent a month in Los Angeles, enjoying a Disneyland and California adventure.

Dan sustained his injury in 2008 after a fall left him a C5/6 quadriplegic.

He’s been a key part of the SCIA Peer Support team since 2013, offering his honest and sincere wealth of knowledge to a great many patients, helping them find a new way forward.

Dan is a keen member of the NSW GIO Gladiators Wheelchair rugby team, and has a strong passion for all sports, live music and traveling the world.

Every week you can catch Dan and his trusty sidekick and assistance dog, Charlie, as they do the rounds of many of Sydney’s spinal wards.

Suzie recently joined SCIA to help the Peer Support team document, demonstrate and promote their amazing programs.

She is really looking forward to helping the team gain recognition for the great work they do in supporting people with an SCI on their journey to achieve their personal goals.

When she’s not working, Suzie is kept busy playing with her two primary school-aged girls; going camping and ensuring they get outdoors for a good appreciation of playing in the dirt!

In April 2015, Lee sustained a T2 complete SCI after a motorcycle accident. But it hasn’t deterred his zest for life in any way! Lee believes in giving everything a go, from enjoying the outdoors to continuing his love of motorsports. When he’s not busy working in the spinal units in Sydney’s hospitals, Lee enjoys spending his weekends with his family.

www.scia.org.au

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DAILY LIVING

Freewheeling AND Fashionable T

hese days, being a wheelchair user doesn't exclude you from being a favourite in the fashion stakes. Gone are the times when one became almost resigned to wearing nothing but track pants and sweat shirts – not, of course, that there’s anything wrong with that! But the good news is that there are now far more clothing choices available that are functional and which look great.

Everyone likes to feel positive about themselves and wearing clothing that’s stylish and fashionable can go a long way to boost your confidence and self-esteem.

A 2010 study into the needs of people with spinal cord injury (SCI) discovered that finding suitable clothing was a big issue for people sitting in wheelchairs. Not only was it hard to find items that were easy to put on and which sat correctly, it was almost impossible to find clothing that looked good. The study found that, “The needs of people with an SCI were not being met by current available and affordable clothing solutions and that clothing design overlooked key concerns.”

Consider for a moment the size of the disability market and the fashion industry.

Fashion is a $1.2 trillion global industry, with more than $250 billion spent on fashion every year in the United States alone. The World Health Organisation estimates that 1 billion people – some 15 per cent of the world’s population – have a disability of some kind and of those, nearly 200 million grapple with impaired functionality. That’s a whole lot of people looking for clothing that can meet their unique requirements.

It comes as no surprise to know that, to date, very little of that $1.2 trillion has focused on the needs of people with disabilities. Instead, it’s been left up to a few innovative and forward-thinking designers to create clothing with the wheelchair user in mind.

One such pioneer leading the way is Izzy Camilleri. A Canadian mainstream designer, Izzy was initially approached by a wheelchair user wanting a cape that

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would work well with her limited mobility.

It was a “light bulb moment” for Izzy who realised that this was a major untapped market that she wanted to get involved in.

Today, more and more designers are getting in on the act. The last couple of years in particular has seen a rise in conversations where “fashion” and “people with disability” appear in the same sentence. People with a disability are increasingly seen on the catwalk and in 2016 Tommy Hilfiger became the first major fashion designer to launch a line specifically with their needs in mind.

Big names in the fashion industry can no longer afford to ignore the potential that exists to design in a way that’s inclusive for all.

But while we wait for mainstream designers to get their act together you don’t have to settle for less. Make sure to check out our clothing page on the SCIA website (http://bit.ly/clothingSCIA) to see what’s available now in the adaptive clothing line. We guarantee you’ll be pleasantly surprised! Many mainstream fashion lines are already innovating by designing for all kinds of body shapes and sizes, and don’t forget that sometimes a simple alteration is all that’s required to make fashionable clothing more functional and accessible.

The disability voice is strong, loud and persistent. Runway of Dreams founder, Mindy Scheier, began designing for people with a disability when her son Oliver, who has a rare form of muscular dystrophy, wanted to wear jeans to school just like his friends. Let’s be inspired by her belief that, “One day adaptive clothing will be in the mainstream.” Let’s do everything in our power to make this happen! ■

DAILY LIVING

Keep Pushing Clothing Jason Parker sustained his SCI in 2013 and has struggled to wear pants and shorts ever since. “They would always have buttons and studs, or zippers on the back pockets which caused skin issues – so I decided to create my own wheelchair-friendly pants and shorts.”

Jason established Keep Pushing Clothing in 2016. He is currently working closely with a design company to try and give everyone access to wheelchair-friendly clothes, knowing first-hand the stress of choosing what to wear without it having a negative impact on your body.

Jason is already selling unisex hats and shirts and is planning to produce wearable samples in 2019.

For further information visit keeppushingcompany.com

www.scia.org.au 17

POLICY & ADVOCACY Squeaky Wheel

Contributors:

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

When wheelchair accessible taxi (WAT) meters can be turned on - update on New South Wales Point to Point Transport Regulations SCIA P&A has successfully been able to obtain clarification on the NSW Point to Point Transport Regulations Clause 82.

The Clause requires wheelchair accessible taxi (WAT) drivers not to engage the taxi meter prior to a passenger’s wheelchair being fully secured and ready to go. WAT drivers receive a NSW Governmentsubsidised $15 incentive payment to offset the time spent in assisting their passengers and can make a payment claim by submitting a NSW Taxi Transport Subsidy Scheme (TTSS) docket.

New Intercity Fleet (NIF) train services.

The NIF Consortium has consulted with a variety of customers and interest groups, including people from regional areas, seniors, and people with different disability types to help influence train carriage access and the design of facilities. NIF carriages will have improved safety, comfort and accessibility for people with disability, including toilet facilities, audio output and screens displaying destination information.

They will also include mobile device charging stations, as well as dedicated areas for prams, bicycles and luggage.

The NIF service is scheduled to commence in late 2019, with trials to be completed earlier in the year. The service will operate from Sydney’s Central Station to Newcastle, Blue Mountains and Wollongong as well as eventually providing a service in the far south coast.

More information about the NIF is available at: www.transport.nsw.gov.au/ projects/current-projects/new-intercity-fleet

In an effort to make the Clause clear to everyone, the Point to Point Commission has informed all new WAT drivers and operators of the rules, and has also sent letters to existing WAT drivers. All operators are now aware of the Clause but unfortunately there are still a number of SCIA P&A accepted an invitation to reports coming in that some WAT drivers attend the AHRC Transport Roundtable are continuing to start the taxi meter early. in Sydney which included representatives SCIA P&A suggests that wheelchair users from several state and national disability and peak organisations to discuss and who are TTSS participants using a NSW WAT and who encounter such a scenario plan actions addressing the numerous transport issues adversely affecting people should inform the driver they are not with disability. allowed to start charging a wheelchair-

Australian Human Rights Commission (AHRC) Transport Roundtable

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

using passenger until the vehicle is ready to go, and request they turn off the meter. Should the driver refuse or argue, ask them to contact the taxi bookings dispatch operator for clarification while you are in the taxi. And always remember to request a receipt from the driver as it contains relevant information including their ID number, taxi license number and time of journey.

Sydney’s New Intercity Fleet (NIF) SCIA P&A is frequently consulted to provide feedback and advice through inclusion advisory panels and committees. We’ve provided advice and feedback on the design of public transport conveyances, services, facilities and infrastructure, including Sydney’s 18 accord magazine

Issues identified included:

• T ransport conveyances being noncompliant with the Disability Standards for Accessible Public Transport (DSAPT) minimum allocated space and access requirements • I nsufficient and ineffective penalties for non-compliance • D iscriminatory policies and procedures by transport service providers – particularly budget airlines that have a maximum capacity of two wheelchair users per flight.

Consideration is also being given to the establishment of a National Advocacy Network comprising representatives from disability peak bodies and advocacy services. Further information will be provided in the next Squeaky Wheel.

POLICY & ADVOCACY

Squeaky Wheel

Venue access and ticketing roundtable SCIA P&A accepted an invitation to attend a roundtable at NSW Parliament House on 5 December. Hosted by Ms Yasmin Catley, Member for Swansea, and Ms Liesl Tesch, Member for Gosford, its aim was to better understand the various issues adversely affecting people with disability, their family, friends and carers when booking tickets to events and accessing venues.

The roundtable was attended by people with disability, parents of children with disability, disability organisations, and industry stakeholders, including ticketing companies, and major venue and theatre representatives.

Issues identified included: • I ndividuals requiring wheelchair spaces not being able to book tickets online • B eing unable to obtain the complimentary ticket for a companion by using a Companion Card • S ome venues only offering wheelchair spaces in A Category sections, forcing people with disability to pay premium prices • W heelchair spaces needing to be booked with the venue box office – often only during restricted business hours • S ome smaller venues selling the complete season of shows up to nine months in advance • P roviding wheelchair spaces, but without any companion seating being made available.

The roundtable outcomes and action items will be followed up for further discussion in 2019 and will be reported in the next Squeaky Wheel.

If you have any related issues or recommendations to make, please contact SCIA P&A at: policyteam@scia.org.au or call: 02 9661 8855

Sydney Opera House opens accessibility upgrades in the Joan Sutherland Theatre On 30 November, the Sydney Opera House opened major accessibility upgrades to the Joan Sutherland Theatre (the Opera Theatre), creating an independently accessible path of travel through the venue. They also unveiled a new lift enabling patrons using wheelchairs

or with limited mobility to enjoy the Opera House’s Northern Foyer.

These latest upgrades are part of a 10-year refurbishment plan which will eventually see a new level passageway linking the Southern and Northern Foyers and a new lift connecting all levels of the Northern Foyer.

For a number of years SCIA P&A has been consulted for advice and feedback on the Opera House’s accessibility, facilities and services. We’ve also been asked for our input on the Accessibility Masterplan, which includes a long-term strategy of upgrading all existing venues and facilities, as well as creating a variety of new performance spaces and venues throughout the Opera House.

The Opera House Concert Hall is also scheduled to be upgraded from 2020, requiring the Concert Hall to be closed for between 20-24 months. The Concert Hall upgrades will virtually mirror the upgrades for the Joan Sutherland Theatre, including access to the Northern Foyer.

For further information about the Sydney Opera House accessibility upgrades go to: www.sydneyoperahouse.com/our-story/ Renewal.html www.scia.org.au 19

POLICY & ADVOCACY Squeaky Wheel

◀ continued from page 21

Sydney ANZAC War Memorial – Hyde Park The ANZAC War Memorial has recently undergone a multi-million dollar extension which provides access to the three different levels. All are accessible via a lift between the first two floors and two wheelchair stair platform lifts to and from the new extension. The memorial has an interesting exhibition of old and new images, as well as statues and smaller tactile statue replicas for those who are blind or who have vision impairment.

Touchscreen technology is also available for information about the exhibition. For example, a diorama showing a 3D-scale model of a battle zone includes interactive touchscreens built into a desktop surrounding its glass dome.

However, it’s disappointing that the advisory panel was briefed on the diorama only after it had been developed.

Currently, people seated in mobility aids can only use the touchscreen by sitting side on as the exhibit provides no underneath clearance.

SCIA P&A made a point to the designer that this diorama is both inaccessible and exclusive. People with disability should have been involved in the design development stage – not afterwards when there’s no scope for a retro-fit.

Need for regulation of mobility scooters, also known as motorised wheelchairs, national review As previously reported, the Australian Senate reviewed the various aspects of mobility scooters and power wheelchairs, particularly in relation to maximum speed and weight. The review came as the result of a senator's wife stepping out of a shop into the pathway of a person using a mobility scooter (possibly travelling too fast along the building entrances).

SCIA P&A lodged a submission against the review’s proposal to speed limit mobility scooters and power wheelchairs to 5 km/h. Such limitations would have an ongoing negative impact on the quality of life of people with disability and older 20 accord magazine

people. SCIA P&A’s submission also aimed to ensure people who use mobility scooters and power wheelchairs, along with the general community, have the opportunity to undertake awareness training.

The final report resulted in just two recommendations: Recommendation 1 The committee recommends that the Australian Government ensure that Austroads has adequate funding to undertake research and consultation activities to inform the establishment of a nationally consistent regulatory framework for motorised mobility devices.

Recommendation 2 The committee recommends that Austroads take into account this report, and the evidence provided to the inquiry, for the purposes of establishing a nationally consistent regulatory framework for motorised mobility devices. As part of its deliberations, Austroads should consider simple and low-cost licencing and registration arrangements and third-party insurance.

Whilst SCIA P&A rejects the initial proposal to consider speed limiting mobility scooters and power wheelchairs, it supports the notion that all pedestrians should be able to get around safely.

This means they must be vigilant when

sharing the same spaces with people using mobility devices. Equally, people using mobility devices also need to take responsibility to mobilise at appropriate speeds in relation to their environments.

Further information, including the Senate Review Committee's report and recommendations, is available at: www.aph.gov.au/Parliamentary_Business/ Committees/Senate/Rural_and_Regional_ Affairs_and_Transport/MobilityScooters/ Report

Australian Human Rights Commission (AHRC) technology roundtable The Australian Human Rights Commission (AHRC) hosted a disability sector roundtable to provide feedback and comment on the various issues which may arise from the impact of technology, including artificial intelligence. Further information is available at: https://tech. humanrights.gov.au The technology roundtable came after the AHRC launched the ”Human Rights and Technology Issues Paper” in July 2018.

This is available at: www.humanrights.gov. au/our-work/rights-and-freedoms/projects/ human-rights-and-technology Submissions to the Issues Paper are available at: https://tech.humanrights.gov. au/submissions ■

REGIONAL ROUND UP

Our regional team

South Coast

Spinal Cord Injuries Australia’s (SCIA) regional team supports people with disability living in regional areas through their NDIS journey and in exercising their rights to choice and control. They are committed to creating independence, dignity and unlimited opportunities for people living with spinal cord injury and through our Support Coordination service have achieved some remarkable outcomes for people.

Our team looks forward to hearing from you.

SCIA’s Illawarra office extends a warm welcome to Patricia Wye as the new Community Services Coordinator. Patricia will be assisting with plan management and support coordination. She brings with her a wealth of experience in the disability sector, having spent 15 years with FACS in a variety of roles, including support worker and case manager, as well as working with group homes and program planning.

Craig Lees Central West/Mudgee PO Box 1140, Mudgee NSW 2850 T: 02 6372 1892 M: 0413 367 523 E: centralwest@scia.org.au Mel Gorman Illawarra/South Coast Suite B, Level 9, Crown Tower 200 Crown Street, Wollongong NSW 2500 T: 02 4225 1366 E: illawarra@scia.org.au Vicki Gow & Catherine Rae New England 20 Murray Street, Tamworth NSW 2340 T: 02 6766 6422 0413 367 520 (Vicki) 0427 257 471 (Catherine) E: newengland@scia.org.au Nicole Mathias Northern Rivers Shop 27 Alstonville Plaza Main Street, Alstonville NSW 2477 T: 02 6766 6422 E: northernrivers@scia.org.au

Patricia’s appointment marks her return to the Illawarra. She’s says she’s excited to be working with SCIA and resuming her passion for working with people with disabilities. "I’m really looking forward to improving the quality of life for people with disabilities by voicing their concerns

Northern Rivers

and helping them with everyday skills. My aim is to help them gain the independence they need to thrive and live effectively in their community and their home environment. I believe the NDIS offers a wide range of choices to help improve quality of life and this role will enable me to help our clients to achieve the best possible outcomes.”

Patricia is keen to begin meeting local members and begin her work in supporting them in ways which make a real difference.

From January 2019, the SCIA Wollongong office will no longer be located in the Wollongong Mall. New premises are currently being finalised.

Contact Mel or Patricia for further information or visit sica.org.au/aboutus/contact for updates.

Nicole Mathias

A warm welcome to Nicole Mathias, who is the new Community Support Coordinator in the Northern Rivers area.

Before commencing with SCIA, Nicole worked as an NDIA Plan Manager for FSG Australia, and really enjoys assisting those members in the community who are less fortunate. She’s looking forward to making a huge difference and sees SCIA as a good fit to be able to do this.

The Northern Rivers office has been very busy with the addition of eight new clients, who were referred to us through recommendations from the wider community. We’ve also been active finalising new service agreements for our existing clients for the full period of their new plans.

With the recent merger of Ability Advocacy and SCIA, the Northern Rivers office will soon be relocating to new premises which can comfortably accommodate our larger team. Contact Nicole or visit the SCIA website for further information.

New England The New England office continues to assist clients with Support Coordination and Plan Management and we’ve been busy helping many individuals with the transition of their new plans with the NDIS. The team recently attended the Disability Expos in Tamworth and Armidale.

These provided an excellent opportunity to meet many of our out of town clients and to promote the services which SCIA can provide in those areas.

We’ve thoroughly enjoyed getting to know our New England clients this past year and look forward to continuing our services in 2019. www.scia.org.au 21

BOARD NEWS

Update from the AGM T

he SCIA AGM was held on 22 November 2018 at Sydney’s New South Wales Golf Club.

Meet our new Directors

There were two main items of business:

Robert Vander Kraats

1. The adoption of two new Board members to replace two retiring members 2. The nomination of two new life members.

Board Chairman, Mark McCauley, and Board Member, Brad O’Hara, made the decision to step aside. Both gentlemen have made significant contributions to SCIA over the years and their experience, passion and knowledge will be sorely missed.

In their place, Paul Crake and Robert Vander Kraats were both elected unopposed. We look forward to the fresh ideas and energy we know they will bring to the SCIA Board.

Long-serving staff member, Tannia Smith, and former Board member, Brad O’Hara, have been nominated as life members.

This recognition is fully deserved for their significant contributions to the work of SCIA over many years.

Subsequent to the AGM, the Board elected as its new Chairman Michael Rabbitt, who has been a member of the Board since 2017.

Michael has enjoyed an extensive corporate career in the insurance industry at IAG and NRMA, giving him a strong understanding of the needs of member-based organisations.

His wealth of experience includes managing profitable portfolios, leading a diverse range of teams, and developing and implementing corporate strategies.

Michael became a paraplegic as a result of a compensable work accident in 1992.

He is the father of two adult sons and regularly volunteers for several community organisations. ■

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Robert is a fully qualified physiotherapist. He has completed a Masters in Sports Physiotherapy and a Certificate of Integrative Medicine.

Robert has previously owned and directed three physio practices and has served as a committee member of Sports Physiotherapy Australia and as a Board Member of HeadWest.

In 2015, Robert suffered a stroke and has since been committed to engaging in rehabilitation every day. As a NeuroMoves client, Robert is very keen to use his skills and experience to assist with the continued development of the NeuroMoves strategy.

Paul Crake After being blown from his racing bike into a fence post during a cycling race in New Zealand in 2006, Paul Crake was left with T4 paraplegia.

Paul is the Director of Total Ability Pty Ltd, which since 2011 has supported people in the disability community with all aspects of driving and vehicular access. Total Ability has grown significantly under Paul’s leadership, having established high quality relationships with a national network of driving occupational therapists, specialist driving instructors and vehicle modifiers.

Paul was awarded a Bachelor of Commerce Degree in 2000 and previously worked at KPMG. He also has an in-depth knowledge of industry funding arrangements, working with the NDIS both from a participant and provider viewpoint, and developing viable business models in the Australian disability space.

Are you getting the most from your NDIS plan?

SCIA’s NDIS team is dedicated to helping you achieve the most from your plan. Contact us today to see how we can help you through the NDIS journey.

scia.org.au | 1800 819 775 | info@scia.org.au

TECHNOLOGY Graeme Smith, Ability Technology

Laptop or tablet for home control?

Lanyard for phone

I have been using a Windows laptop. I type and use the touch pad with my thumb. That works well for me and I find it convenient to have it all in one, so I don’t have to connect different bits. I would like to upgrade to a new device, but one that also enables me to control appliances at home, such as my TV and lights.

What would you suggest?

I rely on my mobile phone a lot, for phone calls and for controlling some home appliances. I have weakness in my hands and often drop the phone. Is there some way to secure the phone in such a way that I can still use it?

You could consider a Mac such as the MacBook Air which has some limited control options through the Home app (available on the Mac in Mojave, Mac’s latest operating system). However, most of the action in home control has moved to tablets, such as iPads and Android tablets. iPads do not have a cursor and hence no touchpad, even as an add-on. Android tablets do have cursor functionality, so a touch pad can be connected.

What it seems you’re after is an Android tablet with a built-in keyboard and touchpad. These are scarce. However, there are some Chromebooks around, which include the Android OS alongside the Chrome OS. But it’s tricky to get the Android OS to operate devices such as the Logitech Harmony and Google Home.

Microphone options What are the options for microphones for speech recognition? My software came with a headset that works well but I need to rely on someone else to put it on for me.

There’s no doubt that the headset works best and is the most accurate. One reason for this is that the microphone always stays in the correct position, relative to your mouth, as you move your head. On the other hand, it’s not always convenient, such as in your case, when someone else needs to put it on you and take it off when you’ve finished.

An alternative is to use a desktop microphone. A good example is the Blue Yeti (see picture).

It gives a good result for many people.

It won’t be quite as accurate as a headset, but it maximises your independence, as you don’t require the assistance of another person to use it.

So, it comes down to a trade-off between convenience and performance.

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But we have found one or two Android devices that are setup as a laptop – hinged lid, keyboard and touchpad.

The Lenovo Yoga Book is an example.

These might be a good option for you.

Another option would be to get a case with keyboard and touchpad, to use with a standard Android tablet (such as a Samsung). We have only found these on eBay. They would also require you to charge the case as well as the tablet.

The simplest solution to your need is a lanyard. We have found a very basic one that works well. It provides a secure net for your phone and also allows easy access to it, if you’re able to tilt it up with your hand. They’re available from eBay through an Australian supplier and cost around $5 each. Simply search for “Universal Silicone Lanyard Case Cover Holder Sling Neck Strap”.

Backing up data I am concerned about the security of the data on my laptop. I have been using a backup hard drive – is that enough? I’ve thought of using a USB stick, as these seem to hold a lot of data.

A backup hard drive is OK to a point, as far as backing up your files, but it’s of no help if your computer (and backup drive) get stolen, or if they’re damaged in a fire or flood. Hard drives can malfunction also, so you might end up with a phantom backup. USB sticks are easy to lose and don’t have as much storage.

We believe there are strong arguments in favour of cloud backup solutions, such as Dropbox, Google Drive, OneDrive and iCloud. They all provide a certain amount of free storage, but even for paid storage, they are relatively cheap. If your hardware malfunctions or is stolen, your data remains safe in the cloud. Dropbox even stores past versions of your documents for extra security.

TECHNOLOGY

What’s new: Google Home Hub

SENSIBO for Siri

Google has released Google Hub, which incorporates a 7-inch touch screen display and Google Assistant, so you can issue home control commands through the device directly. It can also show photos and helpful YouTube videos on the display.

Sensibo has just announced a version of their popular air conditioner controller for Siri. They say: “With just a few clicks you can now set Siri Shortcuts to control your air conditioner or heat pump with your voice. Simply go to any of your devices in the Sensibo iOS App, adjust the aircon to your desired state, then click Add a Siri Shortcut. Record your voice command and voila! you’re done.”

Our favourite shortcuts include: • “ Turn on the living room” – Turn on the aircon in your lounge room • “Turn off the office” – Turn off the aircon in your office • “Desert winds” – Turn on heating with the fan up high • “Freeze me” – Turn on cooling, at a chilly 16 ºC (60º F) For further information on any technology featured, contact Ability Technology team at info@ability.org.au 2018 0625 SCIA NDIS 135 x 90 JUNE D2 OL.pdf 1 29/06/2018 2:07:08 PM

Technology n

means

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Connection

Where do you start?

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

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INFORMATION AND RESOURCES Able: Gold Medals, Grand Slams and Smashing Glass Ceilings by Dylan Alcott Dylan has never let his disability get in the way of what he wanted to achieve. Growing up, he always had a positive attitude to life and when he discovered wheelchair basketball and tennis he was hooked. The now three-time Paralympic gold medallist, Order of Australia recipient, Grand Slam tennis champion and philanthropist combines elite sport with a love of music (he’s a Triple J radio announcer). But Dylan’s greatest passion by far is changing the way those with disabilities are perceived, and to inspire young people to achieve their dreams.

Access through the SCIA library or visit: https://www.amazon.com.au/

Enjoying the Ride: Two Generations of Tragedy & Triumph by Mitch Sturgeon Mitch was five when he learned his mother would be using a wheelchair for mobility for the rest of her life. At 35, Mitch began experiencing symptoms of primary progressive multiple sclerosis, a particularly disabling form of MS, and his physical challenges grew to resemble his mother’s. In the ensuing years, he muddled through the ethical swampland of clinical trials, navigated the minefield of experimental treatments, and became a popular blogger and disability advocate.

Borrow from the SCIA library or visit: https://amzn.to/2DbXrG3

Falling Awake After Hitting the Ground by Loren Lembke Loren has been President of the Vegan Society NSW, launched the Sydney Vegan Expo, worked on a national vegetarian magazine, started Bounty Burgers gourmet soy burgers and raised her daughter as a divorced mother, all while navigating her environment using a wheelchair. In Falling Awake, Loren offers her own insights into living life to the full and how to thrive and not just survive.

Access through the SCIA library or visit: http://bit.ly/SFMHO

A Certain Loneliness: A Memoir by Sandra Gail Lambert After contracting polio as a child, Sandra Gail Lambert progressed from braces and crutches to a manual wheelchair to a power wheelchair—but loneliness has remained a constant, from the wild claustrophobia of a child in body casts to just yesterday, trapped at home, gasping from pain. A Certain Loneliness is a meditative and engaging memoirin-essays that explores the intersection of disability, queerness, and female desire with frankness and humour.

Access through the SCIA library or visit: https://amzn.to/2sFMrKJ

Shepherd Center: Spinal Cord Injury Resources On this informative website, you’ll find a wealth of spinal cord injury-related educational material for patients, families and caregivers. There are printable tips and resources, videos demonstrations, links to additional in-depth material and much more.

Access through the SCIA Library or visit www.myshepherdconnection.org/sci

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

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The gift of a lifetime S

pinal Cord Injuries Australia’s (SCIA) work relies heavily on donations from individuals, groups, companies and grant-making foundations. Through their generosity, we’re able to purchase specialist equipment for NeuroMoves, provide peer support to the newly injured, and be available by phone and email to directly help people every day.

You can choose to make your gift anonymous, or you may like to have it discreetly recognised in a manner of your choosing to ensure your memory, and your generosity, live on in perpetuity.

If you’ve yet to organise your will, we suggest that you seek independent legal advice from your solicitor, the State or Public Trustee, or a Trustee Company when preparing this important document.

We all want to leave our mark on this world; to know that our life mattered. Leaving a gift Tell your loved ones in your will is one of the most valuable ways you can help individuals with a spinal cord Your family and loved ones need to be injury to live as independently as possible. advised if you’re considering leaving a gift in your will. By letting them know Why is a will important? that making provision for a charity is Making a clear, legally valid will, is the important to you, it’s more likely that best way to ensure that your assets are your final wishes will be carried out. protected and distributed according to your Every gift counts wishes. Your will is a living document that accompanies you on your life’s journey and No matter how large or small your gift is, provides you with the reassurance that you every donation can make a big difference. have looked after those close to you.

If you’re considering leaving a gift to SCIA Yet, despite its importance, studies show in your will, then make sure to advise that at least 52% of Australian adults do your nominated executors and guardians not have a valid will. of your intentions. We suggest you use a solicitor or professional will-writer to How to leave a gift in your will ensure your will is legal and valid.

Making a will doesn’t have to be expensive, To make it easier to organise such a or complicated, but you will need to specify donation, the SCIA website has some if you would like to leave a gift to a charity. examples of wording to take to your There are several ways you can do this. Some solicitor. Our friendly staff are also on of the more common methods include: hand to discuss specific areas you may be interested in supporting, so don’t • S hares of your estate hesitate to contact us on 1800 819 775 After you’ve provided for your family or email info@scia.org.au. All enquiries and friends, you can leave a share, or the are always treated with the utmost remainder, of your estate to the charity of respect and confidence. your choice. This is called a “residuary gift”.

If you’ve already made provision for • C ash gifts SCIA in your will, we’d like to thank When you leave an exact sum of money, you in advance for your generosity and it’s known as a “pecuniary gift”. vision in supporting the work we do. ■ • Specific gifts This could be any item of value, such as antiques, jewellery, or paintings, for example.

• G ifts in trust You can leave a sum of money for someone to use over a period of time. When that time has ended, the gift can be passed on to other recipients, such as a charity. www.scia.org.au 27

CALENDAR

Events INDUSTRY FEB

MAY

19 February

8-9 May

Disability Support Workers Conference Brisbane, QLD

ATSA Independent Living Expo Sydney Olympic Park NSW

http://bit.ly/DSWC19

https://www.atsaindependentlivingexpo.com.au/

26 February - 1 March 6th Pacific Regional Conference on Disability Nadi, Fiji http://bit.ly/PacificDF19

MAR 4-5 March NDS Victorian Conference 2019 Crown Conference Centre, Melbourne VIC http://bit.ly/2FDCHJ0 4-5 March Pacific Rim International Conference on Disability and Diversity Honolulu, Hawaii, USA https://www.pacrim.hawaii.edu/

APR 5-6 April Southwest Disability Expo Whitlam Leisure Centre, Liverpool NSW https://www.southwestdisabilityexpo.com.au/

28 accord magazine

15-16 May ATSA Independent Living Expo Royal ICC, Brisbane QLD https://www.atsaindependentlivingexpo.com.au/

CALL US:1800 672 437

Contact us today for an obligation free quote and demo! freedom

Freedom Motors Australia introduces the all new latest model KIA Carnival Freedom Van Wheelchair Accessible Vehicle Modification.

Available as a Family (Wheelchair behind driver and Passenger seats),Passenger (Wheelchair behind the middle row seats),Extra Long (2 Wheelchairs) and Self-Drive Transfer (Disabled person drives the vehicle by transfer) Designs.

Sizes are as follows: 1400mm Rear Entry and 1500mm internal Height.

FREECALL:1800 672 437 www.freedommotorsaustralia.com.au sales@freedommotorsaustralia.com.au