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Features

From the CEO From the President

30 Regions in focus 34 50th Anniversary Morning Tea

News Fundraising

38 40 43 44

Daily living Policy and advocacy

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Accord turns 40 Daily Living

10 Technology changes the game 14 Our organisation lives on 18 A critical path from Walk On to NeuroMoves

Information and resources Social media and events

Technology

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 Celebrating 50 Years: 1967−2017

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

Editor Fiona Jackson

Designer Shauna Milani

Sub Editors Rosemary Gillespie Glynis Skepper

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

Celebrating 50 Years: 1967−2017

PETER PERRY

The tough QUESTIONS ANSWERED Having been at the helm of Spinal Cord Injuries Australia (SCIA) for the last nine years, I’ve learnt a lot about the sector and observed many changes for Australians living with spinal cord injury (SCI).

For this issue celebrating our 50th anniversary, I’m answering some of the tough questions we have had to ask ourselves in recent times, as we’ve prepared for the future as an organisation operating within the National Disability Insurance Scheme (NDIS). My aim is to share my hopes for the next 50 years and share with you all, our members, clients and readers how SCIA will continue to deliver services to the changing needs of the community.

How has Australia’s attitude towards people living with disability changed in the last 50 years, and what has been the impact for people with SCI? The last 50 years have brought enormous change. In the early days of our organisation’s history, the improvements were based around raising awareness and altering the perceptions about people living with a disability so that inclusion in everyday life was promoted. After that time, the focus turned towards ensuring that government funding was available so that fewer people were marginalised and able to live as full a life as possible. In more recent years, technology has played an increasing role, from smart phones and tablets to assistive devices and home automation systems.

What do you see as SCIA’s greatest achievements over the last 50 years?

SCIA has been at the forefront of the disability rights movement, with selfless people such as John Moxon, Brian Newton, David Brice and Joan Hume leading the way on behalf of so many others. During the last 50 years we’ve been involved in numerous campaigns to improve the world for people with a disability, in areas such as deinstitutionalised accommodation, aids and equipment, public transport and 2

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the design and functioning of various government schemes, such as the Lifetime Care Scheme in New South Wales.

In the meantime, we’ve not waited for the inevitably slow processes of change to wind their way to a solution: we have forged ahead and created many new services, such as innovative accommodation, peer support in the hospitals and beyond, emergency and out of home services, and employment and exercise services. However, all of these campaigns are just components of, or building blocks towards, SCIA’s overarching ethos, which is to do whatever it takes to support our members.

We’ve done that successfully for 50 years, and will continue to do so for as long as we’re needed.

What does the future look like for people with SCI in Australia?

The future has never looked brighter for people living with SCI. A combination of social changes such as the full rollout of the NDIS, and the creation of nofault catastrophic injury schemes across the country will lead to a level of social acceptance and inclusion that could only have been dreamed of by our organisation’s founders. In addition, the rate of technological change and medical advances means that many of the impacts of living with a physical disability will be greatly lessened and quality of life improved still further.

What role do you see SCIA playing in the future? Do you see challenges or opportunities and what are they?

SCIA has been true to its founding ethos for 50 years, and we’ll continue to follow that path. There are always challenges and this organisation has faced many as the decades have passed, but as long as we’re genuinely focused on the needs of our members, clients, and the broader community, we will meet and overcome any roadblocks that may come our way.

Continued on page 4 ▶

CHRISTINE TINK

Champions now AND FOR THE FUTURE I was in awe of my youngest son recently after he completed a gruelling threeweek selection course for a branch of the Australian military. To my mind, it’s a course that aims to beat you down psychologically or wear you out physically – whichever comes first.

who – in our minds – we set apart from others. It’s a normal human trait to select and look with admiration at another being, seeking to mirror actions and behaviours we perceive to be desirable.

Those champions seem not to be deterred by setbacks in the race.

He did it last year, too. On that occasion, although he finished, he wasn’t selected. He went home, continued training, and went back to try again this year. He says it was harder second time round – whether in actuality or perception it’s difficult to say – but he was finally successful.

Through Spinal Cord Injuries Australia (SCIA) I have met many people who I consider to be champions. For example, Joan Hume never gave up on her battle for equality for those with a disability. Despite a high level spinal injury in her early twenties, Joan led a full and successful life surrounded by family and friends. I took huge inspiration from her journey and story.

But the reason for sharing my story is not only that I’m so incredibly proud of my son’s efforts. It was his words to me when I next spoke to him. Apparently, on every occasion he felt like quitting he would open his notebook and read some inspirational words he’d jotted down. One comment in particular jolted me to the core – “Mum does it harder every single day.”

Wow. I felt such a fraud. Quadriplegic as I am, I was sitting in my slippers in front of the fire with a glass of wine. For a brief moment I thought, what’s hard about this?

Certainly my son’s perception was that my life is really hard.

Life with a disability is by no means easy. In fact, it can be downright difficult and often incredibly challenging, but I sometimes have cause to wonder what other misfortunes I could face that would be worse. Watching the news each night is certainly proof of this theory. For sure though, I would certainly have never thought of myself as an inspiration for someone who’s able-bodied.

My plans for the future are definitely different since my spinal cord injury, and what’s more they are constantly changing as I discover new ways and means of achieving the many items on my bucket list. Often this is a result of inspiration from others, and through that inspiration comes hope.

We all have our champions; people who we admire and aspire to be like. People

And I often recall the hope and inspiration that an SCIA peer support worker named Sheree, with her trusty assistance dog, Jade, gave to both me and my family while I was in rehab. For someone newly injured, Sheree showed me promise of being able to live such a “normal” life.

At the moment, my greatest hope and inspiration is derived from the work of Professor Reggie Edgerton and his team.

I am so very excited by SCIA’s partnership with SpinalCure Australia and the University of Technology Sydney in setting up a research laboratory for Professor Edgerton in Sydney. First cab off the rank will be involvement in a quest to give hand function to quadriplegics through exoskeletal electro-stimulation of the spinal cord.

Alas, both Joan and Sheree are no longer with us but I wonder if they ever realised their amazing influence in my life – an influence that continues to this day?

But, as a mother, perhaps the biggest question in my mind is, who knew my son felt this way?

Wonders really do never cease! ■

FROM THE PRESIDENT

Celebrating 50 Years: 1967−2017

FROM THE CEO ◀ Continued from page 2

The future has never looked brighter for people living with SCI. A combination of social changes such as...the NDIS, and the creation of no-fault catastrophic injury schemes...will lead to a level of social acceptance and inclusion that could only have been dreamed of by our organisation’s founders.

How can the SCI community influence inclusivity and campaign for real and lasting change for people with physical disabilities?

I believe the answer is quite simple: people just need to grasp the opportunities that the NDIS presents to become more involved in everyday life; the more people with SCI are engaged with all aspects of the community, the sooner full inclusion will be a reality.

4. Creating innovative services to meet emerging needs; and 5. Being involved in groundbreaking research such as Project Edge.

What do you see as the role of the NDIS and the NDIA in the future?

The NDIS is the biggest social reform of our generation. If it’s done well (which it will be, as there are millions watching to ensure this happens!), it will transform the lives of our If you could change the future for members and everyone living with people with SCI now, what would a severe and lifelong disability. I’m you do? really pleased that, despite some I’d do what we are already doing: occasional arguments about funding 1. Ensuring our members are taking full and timetables, the NDIS is fully advantage of the NDIS; supported by all sides of politics and at all levels of government. I can’t see 2. Advocating for change to make sure the that changing at any time in the future NDIS is as fit for purpose as it can be; without a huge social backlash. ■ 3. Providing help and assistance to everyone who needs it, whether they’re in the country or the city, are old or young, or in the NDIS or not;

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NEWS

NeuroMoves Canberra gets more people on the move Residents with a spinal cord injury and other neurological disabilities in our nation’s capital city will now be able to access and reap the benefits of our diverse and innovative exercise service, NeuroMoves, after our newest gym opened its doors on 1 November.

Thanks to the generous support of the Australia Captial Territory (ACT) Government, who committed to a one-off grant of $300,000 to Spinal Cord Injuries Australia (SCIA) and a generous grant from the John James Foundation, we are delighted to announce the newly established centre is now taking clients at the Flynn Community Hub. National NeuroMoves Manager, Leah Sholer, says she is excited for people in the ACT who will now have access to this program in Canberra of its kind, it’s really service; a service she knows changes lives. exciting that people will now have the opportunity to access it,” Leah says.

“NeuroMoves is a suite of exercise services aimed at improving a person’s function, Our ACT clients have fought long and mobility, independence, health and hard for this vital program to be made wellbeing. Each person sets individual available. A huge thank you goes out to all goals and works with a team of therapists those who helped lobby for NeuroMoves to achieve these. There are so many Canberra, in particular Peter and Loreign positive benefits of having NeuroMoves Randall, John Owen, Suzette Searle, in the community and as it’s the first Eugene and Helen Holzapfel, B Harris,

Accessible Balga Leisurepark, WA The newly refurbished Balga Leisurepark in the City of Stirling, Western Australia, now has improved entry access, making it easier for people with disabilities to enjoy the facilities.

Previously, visitors had no option but to push open gates or enter through turnstiles. However, the new EasyGate SG speedgates are wide enough to accommodate wheelchairs and other assistive devices. Facility Manager, Luke Ellis, hopes that the speedgate will improve visitor experience by allowing people with disabilities to self-manage their own entry and exit.

To find out more about their accessible facilities and classes contact Leisurepark Balga on (08) 9205 7340 or email leisurepark@stirling.wa.gov.au.

Patricia Gray, Daniel Savage, Jordan Kramp and Cheryl Crilly.

We invite SCIA members to take advantage of our FREE consultation to see how NeuroMoves can benefit you.

NeuroMoves is also a registered provider under the NDIS, making it even easier for you to access our service. Contact us at 1800 819 775 or email info@scia.org.au to book a free consultation.

Our new website is live, we invite you to visit On 1 September, Spinal Cord Injuries Australia (SCIA) launched a brand new website. In addition to a fresh look, we’ve included new features such as simpler navigation paths to give our visitors a better and more interactive experience.

Our website has been specifically tailored to make it easy for people with a spinal cord injury (SCI), their family, friends and carers to be able to access up to date information easily. With content areas covering ‘Living with a disability’, exercise services and the National Disability Insurance Scheme (NDIS), it’s become a one-stop-shop for everything SCI.

In the future, we’re hoping to provide our visitors with a live chat function, discussion forums and much more.

Visit our website at www.scia.org.au and let us know what you think!

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NEWS

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NEWS

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Each state and terr itory has specific pa rking and concession rules an d regulations, but th e ADPS scheme promotes inclusivity and has re du ced barriers for people with a disability wh o may require extra time when getting out an d about.

Quad Wrangle, 1985 Quad Wrangle, 2002

of Sydney and Accessible In March 2017, the City cessing Sydney Arts launched the new Ac as part of the Sydney Collectively (ASYD.CO) mpaign.

Access and Inclusion Ca e direct and accurate ASYD.CO aims to provid ibility options and digital pathways to access ues and events. information relating to ven include Sydney Theatre Partnered organisations and the Museum of Company, Carriageworks Contemporary Art. o provided a free The City of Sydney has als e app, available in Accessible Sydney iPhon s accessible restaurants, Apple’s App Store, that list t d cultural venues, touris accommodation, arts an rking. attractions, toilets and pa

FUNDRAISING

Fundraising gold in the community Narellan Vale Public School goes orange and blue for SCIA The children of Narellan Vale Public School.

The students of Narellan Vale Public School chose to raise funds for us as one of their fellow students has received treatment for a rare condition causing her spine to become dangerously inflamed. The students opted for a mufti day and dressed in SCIA’s colours of orange and blue. The whole school really got behind the idea, raising nearly $1000 for SCIA! A huge thank you to everyone involved.

Trusts and foundations

A big thank you to the Ian Potter Foundation for their tremendous support to help us expand the operations of our Australian Disability Enterprise (ADE). A grant of $200,000 will go towards this important initiative that will increase employment and upskilling opportunities for people living with a disability.

Thanks also go to Panthers Penrith for awarding SCIA a grant of $5,000 through the Penrith Local Government Area ClubGRANTS program. This welcome funding will go towards new equipment that will enable NeuroMoves at Penrith to offer a wider range of exercise services for local clients.

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A big shout out to our fabulous fundraisers We have so many fantastic people raising much-needed funds for Spinal Cord Injuries Australia (SCIA). We would like to thank these wonderful folk and invite others wanting to do something different to get inspired and give us a call. Taking part in a challenge or organising your own event or activity is a great way to raise money and celebrate our work in the community.

Leading the charge for SCIA in Adelaide’s City-Bay Fun Run was Anthony Awkar, whose aim was to raise more than $700. Eight years ago Anthony suffered a back injury which worsened over time until he was eventually told he would never walk properly again. However, following a successful surgery, Anthony built up his strength to a point that he’s now stronger than ever before. Anthony says it was this lived personal experience that prompted him to take part.

“Experiencing a spinal cord injury (SCI) yet being lucky enough to be where I am now makes me feel fortunate,” he says. His future goals include running both a half and full marathon for SCIA, as he knows that every little bit raised towards research, awareness and helping those suffering with SCI could be lifechanging for others.

Frances Portelli and her family also ran in the Adelaide event with a goal to raise $3000! It’s a cause very close to Frances’ heart as her son Eugene was involved in a motocross accident in 2015, leaving him a T3 paraplegic. Yet, the tragic crash and the long rehabilitation process have certainly not kept him down and

Eugene still takes part in some of the sports he loved. He’s managed, with his brother’s help, to successfully get back on his jet ski and has recently joined a local archery club. Eugene inspired the whole family (pictured below) to take part in the run and raise money for SCIA.

Last, but by no means least, we had Tara Lisa Smith and her family raise funds by running in Sydney’s City to Surf. Three years ago, both Tara’s 11-year-old twin girls were diagnosed with scoliosis and both needed corrective treatment that is still continuing, including wearing back braces for 22 hours every day. In the words of Tara, the reason they wanted to raise funds for SCIA is because each time they visit the spinal units they’re inspired to get involved. “We’re humbled to see the positivity of these patients, who unlike our girls will be battling their issues for the rest of their lives. Upon each hospital visit, both Rachel and Natasha realise how lucky they are. We, as a family, wanted to help someone, somewhere on their journey.” Next year the family will be doing even bigger things for SCIA, so watch this space.

If you’d like to support SCIA please contact us at info@scia.org.au

Spanners Motor Show revs up for a second successful year We’re grateful to Mark Tanner, founder of Spanners Motor Show, and his group of volunteers who have successfully raised $1,900 to support our work. Mark shares his experience of fundraising.

“Well, after all the headaches were gone and the dust had settled, it was another successful day for SCIA and motoring enthusiasts. We had approximately 120 motor entrants and about 650 members

of the public come and support our worthy cause. We hope to grow the event year on year and offer up a big thank you to all those involved,” says Mark.

FEATURE

When Malcolm Turnbull sustained T5 complete paraplegia in 1980 he left the hospital with a chrome-plated, stainless steel folding wheelchair. It weighed 24kgs and was big and difficult to push. Hard as it is to imagine today, it was considered state-of-the-art at the time.

Susan Wood, Media and Communications Coordinator, Spinal Cord Injuries Australia

Like most technology, the manual wheelchair has developed in leaps and bounds and the archaic and heavy version Malcolm first used is now, thankfully, a thing of the past in Australia. For users like Malcolm, aluminium has now been replaced with titanium and carbon fibre, making wheelchairs much lighter and easier to propel. The one-sizefits-all approach to such a life-changing piece of equipment has long been thrown out the window. Now, each wheelchair is tailored to the individual and their specific needs.

Accessing assistive technology means more than just having the latest and greatest. For someone with a disability, it has the potential to pave the way for greater autonomy over their life and contributes positively to improving their overall health and wellbeing.

After 37 years of repetitive pushing in his manual wheelchair, Malcolm could feel the effects of damaging wear and tear on his shoulders. For him, the introduction of SmartDrive, a power assist device by MAX Mobility, was nothing short of revolutionary.

“I wish the SmartDrive had been an option when I was younger,” he says.

Its portability, power and functionality mean Malcolm is now able to wheel up steep inclines with ease, and travel greater distances than before. “It’s allowed me to explore areas I wouldn’t have bothered with, and has prevented sleepless nights due to sore shoulders.”

Through his work with Permobil Australia, Malcolm has been closely observing the progress of assistive technology, not only for manual wheelchair users, but for power chair users, too. He considers improvements such as seating and positioning technologies which incorporate automated standing functions, tilt and recline seating cushions, and power chair seat elevation to be big leaps forward.

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Bill Georgas' vehicle conversion "yacht of the land".

“It brings users closer to their companions and surrounds, and helps develop a real sense of empowerment,” says Malcolm.

Spinal Cord Injuries Australia’s (SCIA) Peer Support and Advocacy Manager, Rob Wynn, says assistive technology, especially real-time wireless devices such as Bluetooth, is becoming smarter. However, a better understanding of people with disabilities will create better suited devices, so there is still more work to be done.

Last year, SCIA held our third Independence Expo at Sydney’s Australian Technology Park, offering people with, or affected by, a spinal cord injury (SCI) an opportunity to connect and engage with information, products and services.

The most popular exhibits were those showcasing modifications of vehicles, the home, and vocational and leisure activities, such as travelling, and the best way to access

FEATURE them. Feedback from the event suggests people are always on the lookout for better, smarter and more sustainable options offering increasing choice and control.

TiLite with SmartDrive

Tech giant, Apple, is leading the way when it comes to assisting people with a disability, giving users a greater range of options designed to make it easier to interact with their community, remain social and stave off isolation.

Filmmaker Sady Paulson, who has cerebral palsy, uses Apple’s Switch Control headactivated switches and dictation to edit and narrate films. She edited a short promotional video about their assistive technology advances for Apple’s October 2016 Keynote in Cupertino, USA, which coincided with the launch of their assistive technology resource. the wheelchair.” Initial testing conducted at the University of Sydney has been positively At that presentation, Apple CEO, Tim Cook, received by both parents and therapists, said he would like to see technology become suggesting this is a model platform that accessible to everyone. Features such as could be adapted for a number of Switch Control, AssistiveTouch and dictation alternative purposes. enable someone with an SCI and limited hand function to fully interact with their devices Modifications which explore new ways to via Bluetooth-enabled switch hardware. This gain independence and increase involvement means users are able to simplify or create in the community are a popular subject for new commands tailored to their own level of people with an SCI. In just over four months disability. They can also dictate text messages, of recording this in 2017, SCIA’s Customer emails and memos instead of relying on typing. Connect, Peer Support and Policy and Advocacy teams report they have supported Such forward thinking combined with customers in relation to modifications more revolutionary design and improved capability is than 180 times. a great example of how people with a disability can have more of their specific needs met. It Bill Georgas, owner and consultant engineer comes down to consistently thinking outside for Problem Management Engineering (PME) the box in an effort to keep filling in the gaps Auto Conversions in Sydney, New South Wales, that can potentially leave someone with a has been helping people get back on the road disability behind in so many aspects of life that for nearly three decades. He says that more most of us take for granted. electronics are being used to modify vehicles than ever before, and the impact of this is huge.

After observing the rehabilitation and recovery process of her nephew, paralysed “We produce spinner knobs for the steering after developing a tumour on his spine, wheel, with built in wireless secondary Kath Hamilton of walkWELL was inspired controllers. This means the user can steer, use to develop the Loop+. Kath and her sister indicators, wipers and headlights with one noticed many families didn’t have the support hand and without the need to remove that they needed between home and rehabilitation hand from the steering wheel,” he says. sessions and wanted to find a solution. The According to Bill, even though driving controls Loop+ mat sits under the wheelchair cushion have come a long way in the past decade, no and uses a points and rewards system to advance is more pioneering and empowering encourage children to maintain healthy than Space Drive technology, which allows wheelchair habits. someone with very limited hand and arm “Engaging children as they grow older to mobility to drive safely and confidently. continue their exercise therapy can be very “It’s been an absolute life-changer for many challenging for parents,” says Kath. individuals who didn’t think it was possible to ever get behind the wheel again.”

The real-time, data-driven feedback can be accessed through a mobile app of core and Promoting a sense of freedom, spontaneity weight bearing exercises, no matter how small, and inclusiveness for people who wouldn’t and has been described as a “mobile lab for have thought it was possible gives Bill and his www.scia.org.au

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FEATURE ◀ continued from page 11 team the biggest sense of accomplishment.

“Once you’re on the road, you blend in with the other road users and nobody would have any idea that you could be driving from your wheelchair.”

Malcolm Turnbull using a TiLite ZR on Redang Island, Mayalsia

Seven years ago, Bill converted a dilapidated off-road bus into what he calls the “yacht of the land” – an accessible motorhome suited to his disability. It includes an entry lift, and can be operated single-handedly whether he is on or off the road.

One day, Bill and his team would like to design from scratch an affordable expedition vehicle for travelling to remote areas that’s fully accessible. He considers this to be the ultimate freedom for a traveller with a disability.

“Imagine! No searching for accessible accommodation, no renting commodes and hoists. You could even set up a carrier on the back for an off-road wheelchair or any other assistive device.”

Promoting a sense of freedom, spontaneity and inclusiveness for people who wouldn’t have thought it was possible gives Bill and his team the biggest sense of accomplishment.

However, complete access to assistive devices can be tough, often coming down to cost, availability and transport. Even though Malcolm Turnbull hasn’t used public funding to acquire his equipment, he has seen firsthand how restrictive availability of assistive technology and access to public funding can be for people with disabilities in Australia.

Malcolm encourages those who are interested to do their own research and find out for themselves what companies are producing. He recommends looking online, attending local assistive technology exhibitions such as the ATSA Daily Living Expo, and, if at all possible, attending an international exhibition such as RehaCare in Germany.

Malcolm credits assistive technology as one of the reasons he has been able to travel extensively and, as the National Disability Insurance Scheme continues to roll out, he’d like to see more people with disabilities have easier access to the full range of assistive devices.

As the world becomes more connected and automation continues to evolve at a rapid 12

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rate, the impact that even one piece of assistive technology makes on an individual can benefit their life in ways they never knew could even be possible. It’s exciting to think what’s in store for people with disabilities in the future. Even for the now not-so-humble wheelchair.

“It is truly mind-blowing to see the options available,” says Malcolm.

You can’t put a price on that. ■

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FEATURE

A community organisation is the sum of the people who belong to it. Here, long-term staff member Tony Jones shares his story of SCIA over the years.

F

ifty years ago on 4 September 1967, the first official meeting of Spinal Cord Injuries Australia (SCIA) took place in Ward 1 of Sydney’s Prince Henry Hospital, just up the road from our current head office. The original site is now a sprawling complex of upmarket residential units. The hospital building is long gone and the many prominent names associated back then with the formation of the Australian Quadriplegic Association (AQA) may no longer be around, but SCIA stands bigger and stronger, extending out across the country further than at any time in its history.

Twenty five years ago, in the 25th anniversary issue of our magazine I wrote a brief history of SCIA after interviewing a number of the original protagonists or founders – Trevor Annetts, Warren Mowbray, John Munday, Cecil Murr – and reading through the old minutes of the organisation’s official meetings. And, here I am 25 years on, charged with setting down yet another landmark: half a century!

In 1992 when I wrote about our 25th anniversary, I was a young, newly injured quad with a significant disability striking out into community life again, taking for granted services such as attendant care, housing, and employment that SCIA had such a prominent role in shaping and developing.

To give some context to how things were not so very long ago, when I had my injury in 1985 there was almost no accommodation available for young people with severe and profound disabilities. Post-hospital, I moved into Ashton House, originally a 21-bed nursing home purchased by AQA in the mid-1970s to provide accommodation for newly injured people with spinal cord injury (SCI). At the time, there was simply nothing else available to provide targeted support specifically for those with SCI. In fact, the only alternative was an aged care facility. Indeed, it was the founding members’ experiences and amazing fundraising efforts whilst living in nursing homes that led to AQA developing more suitable accommodation.

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Ashton House

By the time I left Ashton House for share accommodation (also leased by AQA) in 1987, I was a recipient of funding to assist with personal care support, enabling me to live independently in the community. This service was provided by the Home Care service of New South Wales (NSW), a NSW government agency, and at the time, the Randwick/Botany branch was run from a house in suburban Randwick. How times have changed! Today, the Australian Unity Home Care– now privately owned by Australian Unity – is the largest disability service provider in the state.

Fast forward to 2017, with “one of the largest social changes to ever hit Australian society since Medicare”, as it’s been described, sweeping across the country with the implementation of the National Disability Insurance Scheme (NDIS). So with that in mind, let’s take stock of the evolution of SCIA. SCIA has its origins in south-east Sydney, thanks to the dedication of a bunch of newly injured quadriplegics who found there was not a single community-based service available to meet their needs and in that void, a movement was formed. The SCIA head office in Little Bay is a direct result of their lobbying and, in 1969, the Department of Lands approved the grant of Crown land. A few short years later and AQA

FEATURE had a head office, accommodation services and regular employment opportunities for people with disability. My first job post-injury back in the 1980s was a data entry position for a contract that SCIA still operates with the NSW government agency, Transport for NSW, analysing, coding and classifying around 40,000 police traffic crash reports annually.

The organisation has expanded its reach steadily since then, developing a suite of programs in support of people with SCI and other physical disabilities. Post-injury peer support targets those newly injured whilst they are still residents in Sydney’s spinal units. It also supports them out in the community by promoting independence and resilience, SCI education and information on how to live a full life after injury. SCIA has long been a resource for information on all aspects of SCI and general disability issues. These services have been funded for many years by the Department of Ageing, Disability and Home Care – money that will soon cease as a result of the NSW Government’s decision to channel all disability related funding to the NDIS. I now work in the policy and advocacy team at SCIA. We’ve been addressing key issues that impact the lives of people living with SCI and similar disabilities. We’re key influencers regarding the increase in the Taxi Transport Subsidy Scheme and were early champions for the development and implementation of

a broad no-fault disability insurance scheme.

We continue to campaign widely on removing barriers to inclusion across all aspects of life, thanks in part to National Disability Advocacy Program (NDAP) funding. Our advocacy service has been further strengthened with NDIS Appeals funding to assist anyone in need of disputing decisions made by the National Disability Insurance Agency (NDIA).

And, with the Federal Government’s recent announcement of continued commitment to fund the NDAP and NDIS Appeals up to 30 June 2020, we’ll be able to continue our advocacy role. Thanks to our close association with iCare Lifetime Care, we also now provide an independent voice for Lifetime Care participants in need of assistance.

When I moved out alone into my own accommodation in the late 1980s, there was no overnight service available to assist with any emergency or personal care needs, such as a blocked catheter. The only option was to call an ambulance and hope that it arrived quickly. As anyone with a high level SCI will know, if you suddenly develop autonomic dysreflexia you need assistance RIGHT NOW! In the early 1990s, SCIA created a new emergency and after hours service to support

SCIA's head office at Little Bay during construction.

www.scia.org.au

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FEATURE The NeuroMoves program in action.

the large number of people with disability living in the Botany and Randwick local government areas. And what a huge difference this made, knowing there’s overnight support available from a registered nurse. Like other NSW state-funded disability services, the funding for this program runs out in June 2018. It’s crucial for this service to continue and it needs to expand into other areas, as SCIA has always advocated. It’s therefore vital that anyone transitioning into the NDIS clearly states they need after-hours or emergency assistance and overnight monitoring written into their plan.

In 2008, we started NeuroMoves, a completely unique activity-based therapy program for people with SCI and neurological conditions, which offers a suite of exercise services ranging from the most basic to highly specialised and intensive options. NeuroMoves is now available around the country, including Adelaide, Brisbane, Melbourne, Perth, Sydney and Lismore. From November it will also be available in Canberra and we have plans to open more new facilities in other regions across Australia.

This is just a snapshot of the expansion of SCIA over the last 25 years. Always at the forefront of our minds is the need to act as a single voice, representing everyone living with SCI and 16

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similar conditions. We’ve developed a hard-earned reputation for strong advocacy and continue to have representation on a number of government and non-government advisory panels from where we continue to influence change for better outcomes for all people with disability.

In the long-term, there’s no doubt that the NDIS is a change that will provide a more comprehensive level of assistance no matter where you live, and what a sharp contrast this is compared to 50 years ago!

With the NDIS now in full swing and many of our members transitioning from old programs into the new scheme, we’ve been learning a great deal about it. On the whole, the change has been positive but it’s not been without its problems.

We have also been learning what is required as an NDIS service provider offering plan management, support coordination and NeuroMoves. In the long-term, there’s no doubt that the NDIS is a change that will provide a more comprehensive level of assistance no matter where you live, and what a sharp contrast this is compared to 50 years ago! It’s a real testament to our founders’ foresight.

Today, our continued advocacy we will help shape the future. How will the next 50 years progress?

See you then. ■

Joan Hume

FEATURE

A critical path from Walk On to NeuroMoves Over the course of its 50-year history Spinal Cord Injuries Australia (SCIA) has often been asked about suitable exercise programs for people with spinal cord injury (SCI). In 2008, driven primarily by the vision of David Prast, then Board Director of SCIA and SpinalCure Australia, we implemented the Walk On program, later expanding and re-branding this initiative as NeuroMoves, SCIA’s exercise service.

Peter Murray was a senior manager at SCIA before he retired earlier this year. During his time with our organisation, Peter worked closely with David Prast, CEO Peter Perry, and all the Walk On staff to manage the program for more than three years. Later, in his role as Head of Development, Peter continued his involvement with the expansion of NeuroMoves across Australia. Today, he continues his association with SCIA as a casual employee and a voluntary senior adviser.

Peter Murray

E

veryone who met and knew David Prast described him as a self-starting and determined advocate for people with SCI. He was a veritable powerhouse; a tireless campaigner who lobbied to improve life for everyone. David sadly passed away in November 2011, but his vision lives on.

Today, there are 11 NeuroMoves centres operating across Australia, nearly 40 SCIA staff working with more than 260 people each month, and formal agreements with 14 universities for exercise physiology and physiotherapy students to be involved as part of formal clinical placement programs.

As a former staff member tasked with ensuring David’s vision became reality, I’d like to share with you a summary of the key milestones of the journey from Walk On to NeuroMoves.

• 2 006 – David Prast travels to the Project Walk facility in the United States (US) and experiences firsthand the innovative program challenging the long held belief that exercise and rehabilitation programs should only focus on non-paralysed limbs and that only limited recovery is possible following SCI. Project Walk promotes full-body repetitive exercise out of the wheelchair with the aim of improving movement and function.

• D ecember 2007 – The SCIA Board approves a pilot intensive exercise recovery program (to be called Walk On) as proposed by David Prast.

• M arch 2008 – Walk On Brisbane commences at the Sporting Wheelies Association gym which David Prast attended whilst living in the Queensland

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capital. Emma Dayman, an experienced exercise physiologist (EP) is our first Walk On staff member. Shane Gilligan, also an EP working at Sporting Wheelies, accompanied Emma to the US to train at Project Walk prior to welcoming the first fee-paying clients in Brisbane.

• 2 008-09 – Walk On Brisbane quickly grows in client numbers and three additional staff are employed, all trained in the US. The team take clients who travel from all over Australia to join the program.

• A pril 2010 – Walk On Sydney opens in partnership with the University of Sydney. Kierre Williams and Alana Galpern, the first two staff in Sydney take on clients. As the program grows, Kierre rises to become National Manager and Alana becomes NSW Team Leader.

Claudia James, currently NSW Regional Operations Manager, joins them a few months later.

• N ovember 2010 – Her Excellency the Governor General, Ms Quentin Bryce AC, officially launches Walk On Sydney.

• A ugust 2011 – Camila Quel De Oliveira commences a PhD at the University of Sydney to research the Walk On program. Camila, a physiotherapist from Brazil, is selected from an international field of high quality candidates. Her PhD scholarship is jointly funded by SCIA and SpinalCure Australia.

• O ctober 2011 – Walk On Perth opens in partnership with Edith Cowan University and with start-up funding

FEATURE from Lotterywest. Leah Sholer, Ronak Bhalvani, and Jessica Barclay form the initial Perth team. Leah is now National Manager of NeuroMoves and Jessica is currently Team Leader of the program in Western Australia.

The Hon. Bill Shorten MP with the late David Prast at the official launch of NeuroMoves in Sydney, 2010.

• J anuary 2012 – Walk On Melbourne commences in partnership with Victoria University at Whitten Oval, home of the Western Bulldogs AFL team. Shane Hill and Hayley Sheriff are the first staff to come on board, joined later that year by Jessica Hansson, who remains Melbourne Team Leader today.

• M ay 2012 – Her Excellency the Governor General, Ms Quentin Bryce AC, officially launches Walk On Melbourne.

• M id 2012 – SCIA has adapted the Project Walk model over the years and makes the decision to cease its formal relationship with that institution. By this time, SCIA has fully established its own training program, with all staff being required to hold Australian professional accreditation.

• N ovember 2013 – Vanesa Bochkezanian commences a PhD at Edith Cowan University researching further aspects of the Walk On program.

• N ovember 2015 – SCIA acquires the community fitness program, Burn Rubber Burn, started by Simone Robinson some 10 years previously. Simone is now employed by NeuroMoves.

• D ecember 2015 – SCIA’s exercise service, NeuroMoves, is officially launched, whilst acknowledging the history of the Walk On name. NeuroMoves now covers six distinct exercise offerings: 1. Locomotor training; 2. Activity-based therapy (previously Walk On); 3. Functional electrical stimulation; 4. Strength and conditioning; 5. Group gym classes; and 6. The soon to commence specialist program for kids.

• M arch 2016 – NeuroMoves for Kids opens at the University of Sydney.

• A pril 2016 – NeuroMoves opens in Adelaide at The Parks Recreation & Sports Centre, with financial support from the Ian Potter Foundation and Purple Orange Julia Farr Foundation.

Aiden, one of our youngest clients, during his Locomotor Training session at NeuroMoves Kids.

• F ebruary 2017 – NeuroMoves commences in Lismore, its first Australian regional centre, made possible by financial support from the icare Foundation and the Newcastle Permanent Charitable Foundation.

• J une 2017 – An agreement is signed between the University of Technology Sydney, SpinalCure Australia, and SCIA to progress new treatments for people with SCIs under the title Project Edge.

The agreement establishes two fellowships named in memory of the late David Prast.

We look forward to sharing significant further developments of NeuroMoves in the years ahead and are currently documenting a complete history of exercise at SCIA. The results of two PhD scholarships will also be available in the second half of this year and a NeuroMoves centre in Canberra is expected to open in November 2017.

Exciting times! ■ www.scia.org.au

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NEUROMOVES PROFILE

The quiet achiever When Jess Gao sustained a T12 spinal cord injury (SCI) and brain injury after jumping from the third floor of a burning building, she had to start the process of learning how to perform physical activities all over again.

Fiona Jackson, Editor, Accord

“I’ve been attending Spinal Cord Injuries Australia’s exercise service, NeuroMoves, in Sydney since 2015, about a year after my injury. I began going after hearing about their gym program and now, thanks to community fundraisers, Wheels in Motion, I’ve been funded to attend NeuroMoves’ intensive service, Activity Based Therapy (ABT), four times a week,” says Jess.

Her therapists are focusing on Jess’ gait. She’s made some impressive improvements, and is now able to walk a short distance with a four-wheel walker.

She’s also started climbing stairs using a Canadian crutch and stair handrail, and her quality of life index has remained constantly high throughout her therapy.

Also improving is Jess’ community integration score which has increased by 15%. The community integration questionnaire (CIQ) measures community participation and integration following a traumatic brain injury. The CIQ consists of 15 items related to living, loving and working. The basis for scoring is primarily frequency of performing activities or roles, with secondary weight given to whether or not activities are performed jointly with others, and the nature of the relationships with others.

For example, whether or not the second person also has a traumatic brain injury.

“Since I started ABT I’ve really progressed. I was initially able to complete 95 metres within six minutes with the four-wheel walker, and now after attending ABT I have increased this to 161 metres,” she reports proudly.

Since her accident, Jess’ injury has meant living with extended family in a singlelevel house which has no steps.

Now, the success of her intensive ABT 20 accord magazine

Jess Gao with NeuroMoves staff member, Simon Borg.

sessions means she can at long last visit her Mum’s house where stairs no longer present her with an insurmountable problem.

“NeuroMoves has improved my independence and I’m re-joining the broader community. I would definitely recommend their program to my friends with SCI because the team are so knowledgeable and do a fantastic job,” she says. ■

POLICY & ADVOCACY

Squeaky Wheel

Contributors:

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

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

NDIS - the cost of control and choice?

services will now need to be funded by alternative funding sources when federal funding ceases in 2018.

The National Disability Insurance Scheme (NDIS) should give people with disability greater choice and control over much-needed support services to enable them to participate in the social and economic life of Australia.

Separate to the individual advocacy and information needs of people with disability, a number of the state and territory funded advocacy services don’t provide individual advocacy; they are funded only for systemic advocacy aimed at addressing issues that affect large groups or all people with disability.

The good news is that the Federal Department of Social Services (DSS) announced in August 2017 that it will continue funding the NDAP, as well as the NDIS Appeals Program, until 30 June 2020.

However, the NDIS has resulted in a number of unexpected negative impacts on people with disability as well as on a number of disability support services which will lose their recurrent annual state and territory government funding from 1 July 2018. This means that many organisations, including our own advice and information service, peer support, occasional and emergency care service as well as a portion of its systemic advocacy service will need to find alternative funding. To try and address this we have accepted an invitation to join a lobby group of disability organisations to campaign for current funding to continue.

The loss of such long-standing services will adversely affect many people with disability who may be unable to seek timely specialist information and referral. As the NDIS aims to increase people with disabilities’ social participation, it seems contradictory to discontinue funding for the information and referral services required when planning a holiday, researching assistive technology for home, study or work, sport and recreation, undertaking home modifications and maintenance, vehicle conversions and modifications, seeking personal care services and respite services, to name just a few. There is also the potential loss of the accumulated wealth of online and physical resources as well as the knowledge and expertise of staff, including key personnel with the lived experience of disability.

The National Disability Insurance Agency (NDIA) has recognised that information and advocacy services are outside its funding responsibility and there is no NDIS participant funding component for information and advocacy. The Federal Government historically funded a number of individual, systemic and legal advocacy services under the National Disability Advocacy Program (NDAP), but these

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However, if there isn’t any increase in the NDAP annual budget to cover the additional cost of doing so, it will most likely create a backlog and unacceptable waitlist for those seeking much-needed individual advocacy.

Spinal Cord Injuries Australia (SCIA) may be calling on members and the spinal cord injury community to assist with the campaign to seek additional ongoing advocacy and funding. This may include asking individuals to contact local politicians, emailing the relevant ministers and shadow ministers and possibly attending a rally or protest.

Please contact the policy and advocacy team if you’re willing to participate.

Campaign for off road access equality We’ve been collaborating with our corporate partners, Problem Management Engineering (PME), to encourage the National Parks and Wildlife Services (NPWS), as well as the NSW Roads and Maritime Services (RMS), to amend policies and regulations to enable people with disability using modified off road recreational vehicles the same right of access to Stockton Beach, near Newcastle, New South Wales, as people without disability currently enjoy.

To us, it seems government and related departmental policies and regulations haven’t kept up with the times in this regard. And although the owners of modified recreational vehicles can apply for a "conditional registration", the conditions relate to vehicles that don’t meet the safety standards. Yet,

Squeaky Wheel

these vehicles are safer than those currently allowed to be used by people without disability.

PME is in the process of negotiating with the NPWS to apply to the RMS to list modified recreational vehicles in their own category, or be included with approved recreational vehicles. We will update you as we hear more.

Accessible electoral polling booths Former President of SCIA, the late Joan Hume, sought legal advice to understand whether lodging a complaint with the Australian Human Rights Commission to ensure all electoral polling booth venues were accessible for people using mobility aids would be considered fruitful.

Inaccessibility when voting is an ongoing issue for our members, so since Joan passed away, we’ve made inquiries to understand what lobbying action is required to ensure only accessible polling booth venues are used, and people with a physical disability have the option of online voting. We hope to have the information we need to launch a campaign prior to the 2019 Federal Election. We’ll share updates as they come in, and we’ll call on members to support us in this campaign once it’s underway.

POLICY & ADVOCACY

We hope to have the information we need to launch a campaign prior to the 2019 Federal election.

Venue and ticketing accessibility remains a priority People with disability, their family and carers attending cinemas, performing arts and sporting venues will most likely have experienced challenges accessing these venues. They may also have experienced issues relating to the location and number of allocated spaces for people with mobility aids and companion seats. The ticket booking process can also be problematic, particularly the inability to book online and utilise a Companion Card.

Additionally, booking tickets is often only available through the venue’s box office and then only during business hours.

The policy and advocacy team have met with a group of interested people to develop a strategy to address this very large and frustrating issue which www.scia.org.au 23

POLICY & ADVOCACY

Squeaky Wheel

involves many entertainment venues and their services. We’ll keep you posted on our progress.

and land on her side, resulting in her hospitalisation and undergoing a total hip replacement.

Mobility Allowance debate heats up

Leader of the Nationals and Deputy Prime Minister, Barnaby Joyce, has previously backed Senator Williams' calls for more stringent regulation in relation to mobility devices. Because of this recent unfortunate incident, Senator Williams now wants his party to endorse a proposal which he regards as a public safety measure: limiting the speed of these mobility scooters from the maximum 10kms per hour to walking paceof 6kms per hour. In a motion prepared for a recent Nationals’ Federal Conference, the senator also called for the outlawing of any mobility scooters weighing – when unoccupied – more than 150kgs.

As mentioned in previous issues of Accord, the Federal Government is reviewing the Mobility Allowance to align eligibility with the NDIS. The Social Services Legislation Amendment (Transition Mobility Allowance to the National Disability Insurance Scheme) Bill 2016 is due to be debated in the Senate and, if passed, will mean people with disability over the age of 65 years who volunteer will no longer be eligible for Mobility Allowance for their travel costs to and from their volunteer role.

We’ve discovered an anomaly in this regard which is going to negatively financially impact some people with disability. The main issue is that those who are on a Disability Support Pension (DSP) or other Centrelink payment, and not the Mobility Allowance, who transition to the NDIS and successfully seek and maintain full-time employment, may qualify for an NDIS Transport Package, but will no longer be eligible for the Healthcare Card (HCC) linked to the Mobility Allowance. This is important because the HCC provides access to Pharmaceutical Benefits Scheme (PBS) items at concessional rates.

It seems contradictory – and indeed at odds with the aims of the NDIS – that the Federal Government is removing access to the HCC in this way. For many people with disability this will be a major disincentive to seek and maintain fulltime employment.

The policy and advocacy team have written to Christian Porter, MP, Minister for Social Services, to raise these concerns and will report the outcome in the next issue of Accord.

Scooters speed into spotlight In early September, National Party Senator John “Wacka” Williams revealed that his partner, Nancy Chapel, had stepped out from her office in regional New South Wales and was hit by a mobility scooter. A witness reported seeing Ms Chapel become airborne 24 accord magazine

SCIA acknowledges that mobility scooter and power wheelchair users need to take responsibility and exercise due care, particularly in relation to their proximity to pedestrians. SCIA also acknowledges that pedestrians need to act similarly when using pavements, especially when stepping out of buildings that could potentially place them in the path of a moving scooter or wheelchair.

Notwithstanding the seriousness of the injuries sustained by the Senator’s partner, this seems to be an isolated incident which has been met by a knee-jerk reaction.

If this proposal was to be implemented, it would have an immediate and ongoing negative impact on people with severe disability. It would also greatly affect our ageing population, who are the group most reliant on these types of mobility devices .

A change in the law would be particularly challenging for those living in suburbs experiencing heavy footpath traffic, and for those living in rural and regional areas who rely on mobility devices to travel long distances – in many instances leading to far longer travelling times.

Whilst SCIA understands the Senator’s concern, it is not in favour of his proposal. SCIA believes the solution is scooter-user education to ensure users operate their vehicle safely and employ appropriate driver etiquette when amongst pedestrians, including reducing speed and always travelling on the kerb side of the footpath. There is also a need for

pedestrians to take greater care when sharing a pathway with scooter and wheelchair traffic - the same care they'd take with cars when crossing a road, for example.

In the interim, we encourage everyone to contact their local and federal members, together with the Nationals at www.nationals.org.au/contact/, to voice their concerns and request that they reconsider this proposal. ■

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NEUROMOVES PROFILE

Determination is key driver for rehabilitation When Steven Edge sustained complete T4 paraplegia just over a year ago as a result of a motorcycle accident, it was his determination to walk again that became his focus.

Fiona Jackson, Editor, Accord

A

t only 24-years-old, Steven’s accident in 2016 changed his life forever, leaving him with a complete T4 spinal cord injury and fractured C1, C2 and T3. At first, not fully understanding the severity or impact of his injury, Steven made a commitment to himself that he would walk again. Today, he is actively working on achieving exactly that and he credits surgery and the intensive exercise provided

by Spinal Cord Injuries Australia’s (SCIA) NeuroMoves program, as key components in his rehabilitation.

According to Steven, immediately after his injury he researched surgical options that might be of benefit and in January this year, he travelled to Thailand to have an epidural stimulator inserted.

What followed was 40 days of extensive programming and mapping of his movements with the stimulator in place.

Post-surgery and back in Australia, Steven was referred to SCIA’s exercise service, NeuroMoves.

Steven says he has many goals, and whilst the primary one is to walk again, his shortterm goal is to take unassisted steps with the use of a walker.

“I want to be more mobile and be able to transfer out of my wheelchair more often.

I’m a big car guy and my chair scratches and damages my car, so the less I can use it, the better,” he explains.

Steven believes working with NeuroMoves and staying focussed on his rehabilitation goals has been a big part of his success.

Now, he has the ability to stand for 30 minutes and only needs one assistant to help him take a step. Steven says, “I am extremely satisfied with what I have

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Steven Edge at NeuroMoves.

accomplished, especially after being told I could expect little to no improvement in my ability to move. I owe so much to all the physiotherapists who continue to help me on my journey.” ■

TECHNOLOGY

The changing face of assistive technology: How did we get here?

Graeme Smith, Ability Technology

I

t’s 4am. Jane has multiple sclerosis and uses a puff switch linked to her iPhone 7 to activate Siri. A voice is heard, as if roused from sleep… “You woke me up!”

Siri complains.

What a journey we’ve been on! Assistive technology (AT) has always followed information technology (IT) and every advance in IT has a spin-off for people with disabilities. But this doesn’t happen automatically. There’s an “AT army” who make the eventual connections, sometimes seemingly in an arm-wrestle with IT companies.

a HeadMouse was $4,000. Today, the HeadMouse is around $2,000, while Dragon, even the professional version, is available for under $400. Another example is the SmartNav, which is relatively cheap because the same technology was used in its sister product, the Track IR, for flight simulation games.

But each stage of history is significant when it happens. I recall a client with spinal injury who burst into tears of joy when I showed him a whole encyclopaedia on a CD. We forget how recent these changes are and how powerful their impact is on people with It seems too short a time to speak about a disabilities. A digital (paperless) world “history” of AT over the last 50 years. Yet means more people with disabilities things move fast in our field. You might can engage in work processes and think the iPad has been around for ages, communication because they don’t have but it was first released as recently as 2010. to handle paper. And Facebook gives Going back to when I first got involved them a level playing field where their in AT, I can recall seeing a very early disability is completely irrelevant. demonstration of Dragon Dictate in 1989.

It required a massive 8 Mb of RAM, and But if the past has been so kind to people a server-level 386 computer. It also cost with disabilities, what about the future? $8,000. But it was exciting stuff!

Will the positive momentum continue?

I believe it will, with that AT army in Then came the 1990s, with CD-ROM red-hot pursuit of every new instead of floppy drives, then internet, development. I predict brain control then email… It seemed that each year will be the next frontier. (Relax – this there was a big step forward. But history is not mind-reading!) has its casualties as well. Some useful-fora-time AT products have now completely Beyond environmental control, I look forward to environmental interaction disappeared, such as the marvellous Pioneer Autochanger, which enabled and anticipation, perhaps sounding a bit access to any of six CDs stored in the like this: device (after a lot of clunking), and the “You are now in bed. I’ve checked that lovely AlphaSmart portable note-taker. all doors are locked and all lights are out.

In IT, we saw the Apple Newton (1993), The air conditioner is set to 22 degrees. the first Personal Digital Assistant (PDA), Don’t forget you have a meeting at 8am come and go. tomorrow so I’ve set the alarm for 7am Remarkably, some products have survived and will have the coffee machine ready throughout this turbulent period of for you when you wake up. Your history, such as the Kensington Expert blood pressure is fine. Good night.” ■ Mouse trackball.

Speaking of prices, a lot depends on whether the AT product has a mainstream market as well. At one stage, while Dragon software cost $8,000, the cost of

www.scia.org.au 27

TECHNOLOGY Graeme Smith, Ability Technology

iPad keyboard accuracy

Voice control for the home

I have an iPad but I have a tremor that affects my finger accuracy when I’m typing. I make a lot of mistakes trying to point to the letters. Using a stylus doesn’t seem to help. Is there any way I can avoid making so many typing errors on the iPad?

I would like to control some lights, a fan and my TV at home by voice.

Is this possible using Siri or Google Home? What do I need to do this?

There has been a lot of development in this area recently, with more to come from Amazon and Apple very soon. Lights can be controlled by Siri (Apple Home) and Google Home if you use Philips Hue globes and lamps, and this is simple to set up. You can also control mains-powered devices by voice. Google Home (pictured below) can control Belkin Wemo devices, including power switches and plugs, whereas Siri can control the Elgato Eve Energy (Bluetooth, unless linked to Apple TV).

Since the introduction of the iOS 8 in June 2014, alternative keyboards have become available for the iPad and some of these are ideal for special needs. One that might suit your circumstances is called SuperKeys (pictured right), which clusters the keys into groups of letters. You only have to hit anywhere in that cluster for an enlarged version of those keys to appear. It does mean two keystrokes for every letter you type, but accuracy is greatly increased.

Backup internet for when it fails I rely on the internet for many aspects of my life, but recently our internet service went down and I was stuck. A power backup won’t help, as that wasn’t the issue – I had power. I could get (and pay for) a second internet service, to have in reserve. I may have to do this, unless there is some other way of protecting my internet service.

The internet is a precious resource for people with disabilities. With all the hype about speeds from internet service providers (ISPs), it is still the case that reliability can be troublesome. The internet goes down all too often, without warning, explanation or apology. One

solution you could consider is to get a modem/router with 4G backup. This means that when your wired network is down, the modem will give you 4G wireless internet. One such modem is the Telstra Frontier Gateway, but other models are available. Talk with your current ISP to better understand your options.

Having a backup internet service from another ISP can be expensive. A portable internet dongle could also be considered, and would have the advantage of being able to operate in a power outage, assuming you have devices available that are powered by battery, such as laptops, tablets, or smart phones.

But control of the television – very important for most people – is surprisingly overlooked by these systems.

However, it can be completed with Google Home, for some of the latest Sony televisions, and also through the Logitech Harmony Companion, which has a database of over 270,000 products, including most smart TVs and Foxtel. But as far as we know, at this stage, you cannot control your TV by voice using Siri. These new systems provide inexpensive home control options for those able to issue commands by voice or directly control mobile devices.

Eye gaze on a tablet Can you tell me how I can use eye gaze on a tablet device? I have an Android tablet but I can’t find any eye gaze products on the internet.

The bad news is that eye gaze is only available for Windows – not Mac, iPad or Android. This is in spite of the fact that the built-in cameras on these devices are very powerful. However, there are some Android projects in development, so keep an eye out for them, so to speak. The Eva Facial Mouse, developed via funding through the Vodafone Foundation in Spain, is interesting and may be worth a trial, but it does require some head movement.

Ability news We have just completed a detailed study of head and mouth control options for computer access. This was funded by the James N. Kirby Foundation. If you would like a copy of this informative report and comparison table, just email us at: info@ability.org.au

If you have any technology related questions contact the Ability Technology team at info@ability.org.au 28 accord magazine

CALL US:1800 672 437

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REGIONS IN FOCUS

A milestone anniversary to celebrate Spinal Cord Injuries Australia’s (SCIA) Peer and Social Supports Coordinator, Glenda Hodges has been part of the New England, New South Wales community for the past nine years.

In this time, she has seen much change. The one constant, she says, is the genuine commitment to people with spinal cord injury (SCI). As we celebrate our 50th anniversary, Glenda shares her optimism for the future of people with SCI living in regional Australia.

Glenda Hodges heads up our regional office in Tamworth and has been part of the SCIA family for nine years. Contact her on newengland@scia.org.au or call 02 6766 6422

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irst of all, congratulations to SCIA for achieving 50 years’ service assisting people with SCI and other physical disabilities and permanent injuries. Over this time, SCIA has provided vital services that have sometimes struggled to receive the recognition they deserve as recent information and government direction has tended to support the intellectual and mental health disability sectors. However, SCIA has achieved so much and continues to prosper and grow by not only carving a niche in a very competitive sector, but by keeping its vision and direction firmly centred on the individual. It focuses on what can be done to assist those affected by an SCI to live a socially active, independent and productive life in their own community.

This is the start of my ninth year with SCIA and I’ve seen many changes happen, some great and some not so great and perhaps the biggest for this region has been the change of direction due to the National Disability Insurance Scheme (NDIS). Its introduction has affected many people, families, carers and service providers and, it’s fair to say, often caused mayhem in related government departments due to many people now becoming eligible who were not previously recognised as being so. Choices and changes have been up for debate, and confusion and anger have been the result for many people tangled up in the process of changing to the NDIS. Only time will tell how the transition to the new scheme will eventually play out.

There have been many stories of how people sustained their SCI and other physical injuries, with the majority relating to motor vehicle and motor bike accidents.

Quadbike and farming accidents are also on the rise, especially out here in regional areas and age doesn’t appear to make a difference as to who is affected, either. Many people find themselves in major hospitals with dedicated spinal cord units, where we have the unique opportunity to introduce SCIA through the great work of our peer support team and Charlie, the wonderful companion dog. Their presence has been a real bonus and has helped so many on their way back to their own communities.

Other changes during the past month have seen the Tamworth office say goodbye to Megan FitzGerald and Les Morriss. Hopefully Megan will be off to fulfil her dream of moving to Sydney soon and Les gets his new bike on the road as soon as possible as well. I wish them both luck and happiness for the future.

I also wish SCIA another 50 years’ growth and increased capacity to support those who need their fantastic assistance. SCIA has history and commitment as a person-directed and person-centred support service and in today’s world of bottom line business direction this is a rare thing indeed. Congratulations again from me and the New England region and the best of wishes for the road ahead. ■

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REGIONS IN FOCUS

Sharing the SCIA connection Ken Hutchison sustained C6 quadriplegia in 1978, and shortly thereafter became a member of Australian Quadriplegic Association, now Spinal Cord Injuries Australia (SCIA). He was one of the founding members in our Illawarra community and has been accessing SCIA’s services ever since.

Fiona Jackson, Editor, Accord

What services do you receive from SCIA?

Ken Hutchison

I’ve received peer support, education sessions and have attended social events from the Illawarra regional centre. I was also employed

by SCIA’s Australian Disability Enterprise team working on the Geo and Data RTA traffic accidents contract in Little Bay in the late 1980s.

How did you hear about these services?

I found out about SCIA in 1978 when staff member Bob McKenzie came to Prince Henry Hospital’s rehabilitation ward where I was at the time. I was one of the founding members of the Illawarra office when it first opened in Wollongong, New South Wales, and I’ve continued using SCIA’s services since then.

Why did you sign up to receive peer support initially?

I wanted to find out how to better my life in a wheelchair by receiving information about my disability and I also wanted to meet other people who had similar injuries to myself.

What was your experience of this service?

Very good.

What’s been the impact on your life of being a member of SCIA? SCIA services have changed my life for the better. I have learnt more about my disability and about what is out there for people in wheelchairs, and I have made some great friends along the way. I’m now better connected with local people in the Illawarra region with similar disabilities. The information I’ve received about equipment and products has also helped increase my independence, which is really important to me.

Can you share a personal key milestone?

Getting my driver’s licence back after my injury was definitely a highlight because I regained some independence straight away. I also experienced sit-skiing which was great as I was able to enjoy something that I had enjoyed doing prior to my accident.

Can you share one key goal for the future?

To live a few more years!

Who would you recommend this service to and why?

I’d recommend getting involved and becoming a member of SCIA to anyone who is in a wheelchair because you can learn so much and get really valuable information that can help you. The Peer and Social Support Coordinator, Mel Gorman, is also very good!

What does SCIA mean to you?

SCIA means a lot to me, as I get the chance to attend the centre for peer support and catch up with friends who I was in hospital with. I also get to learn the latest about what’s available for people with disabilities.

One thing you’d like other people to know about living with a spinal cord injury?

Life is not all over; you can still do things and there are so many activities out there that we can do. It might take some time after your injury to realise this, so persevere and you will eventually reap the rewards. ■ www.scia.org.au 31

REGIONS IN FOCUS

Leaving a legacy and looking to the future Vivienne Newton has been living with the complications of moderately severe cerebral palsy since receiving a whooping cough vaccination when she was just six months old. She has a long-standing relationship with our organisation as both a member and an employee which dates back to the 1980s. Today, she reminisces about being part of a team dedicated to promoting independence and choice for people with physical disabilities.

Fiona Jackson, Editor, Accord

Why did you get involved with Spinal Cord Injuries Australia (SCIA), or Australian Quadriplegic Association (AQA), as it was known at the time?

It was 1981; the International Year of Disabled People and the start of a really exciting decade for individuals with disabilities. The Richmond Report* was delivered in 1983, personal care at home was introduced, people with physical disabilities were included in Human Rights discussions for the first time, and wheelchair-accessible taxis were introduced at long last – so there was a great deal of change going on. My friend and colleague, Joan Hume, was also successful in lobbying Sydney City Council to install wheelchair accessible toilets.

What milestones have you witnessed that have significantly changed the lives of people with physical disabilities?

All through the 1980s, I was employed at AQA Little Bay, initially as a librarian before taking on the role of Information Officer as well. During this time, I wrote quite a few articles for Quad Wrangle and Accord magazine on different aspects of disability.

I also did various other things that weren't exactly in my job description but were all above board and benefitted our individual clients and helped promote AQA’s mission.

Vivienne Newton, left, with friend Nicole Torda.

man who hid his feelings and felt no pain.

So I was really surprised the day I overheard him apologising for not feeling well enough to attend a Board Meeting. I was saddened because I knew how much attending meant to him. Just 90 minutes later, I was so shocked when I realised Brian had passed away. In the 20-odd years Brian was with AQA, he achieved a great deal to improve the lives of people with disabilities – the most significant being the establishment of group homes and personal care in the community.

Also, for a little fun, I took on Randwick City Council when I was living in Maroubra in New South Wales’ first purpose-built group home for physically disabled people. The other residents and I wanted to be able to safely access our local shops in our wheelchairs so I successfully lobbied to have access ramps Can you share some of your memories installed on pavement corners. My final stunt of our organisation that left a lasting took me eight years to successfully complete impression on you? and that was to lobby Randwick City Council The late Brian Newton OAM had spinal to construct a safe route for wheelchair users muscular atrophy and he was second in from AQA offices at Little Bay to the bus command at AQA when I first met him, later stop on Anzac Parade. In 2004, the council marrying him in 1982. Brian lived for AQA presented me with a Community Service and on his retirement became chairman of the Award. I jokingly say they’d had enough of me AQA Board of Directors. He always wanted spending council time and resources and that everybody to believe he was a very strong the award was to silence me! ■ 32 accord magazine

*The Richmond Report redressed the imbalance between institutionalised hospital care and community care in disability services while advocating strongly for a more decentralised and integrated model of care and support.

50th ANNIVERSARY MORNING TEA

Spinal Cord Injuries Australia celebrates 50 years with morning teas across Australia S

taff, members, and our community of partners took a moment on 4 September to celebrate our 50th anniversary, commemorating the enormous legacy of work that Spinal Cord Injuries Australia (SCIA) has delivered over the years for people with spinal cord injuries (SCI) and other physical disabilities. On this day in 1967, the Australian Quadriplegic Association (AQA) was constituted in the spinal unit of Prince Henry Hospital at Little Bay and became a registered charity in November that same year.

Coinciding with 2017’s Spinal Cord Injury Awareness Week (SCIAW), SCIA held a number of morning tea events across Australia to mark this significant anniversary and highlight the impact organisations such as ours have had on people with physical disabilities. The theme of SCIAW’s awareness campaign this year was, aptly, “I can”, celebrating the positive influence people with SCI have in the community. Our anniversary celebrations supported this campaign individually and collectively, giving everyone an opportunity to remember where we’ve come from and what we have still to achieve to realise our vision of a world without barriers for people with SCI. Prince Henry Hospital is no more, but they have retained a number of the original buildings. The morning tea at Little Bay was particularly significant for SCIA as it was held in one of the remaining wards just across the way from the old Ward 1 Spinal Unit, which is now a museum. We could feel a real sense of history and could almost imagine the founders looking over at us with, we hope, approval and a feeling of satisfaction and pride that the organisation they started 50 years ago was still going strong and looking ever more confidently towards the future.

SCIA has produced a video to reflect the great work our community has undertaken over the past five decades and we look forward to sharing this with you as we continue to celebrate our golden anniversary.

We are very grateful to supporter Simon Marnie for taking on the role of narrator, which acts as a fitting tribute to the contribution of his mother, Mrs Jo Marnie, who was a past Board Director of SCIA. ■

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50th ANNIVERSARY HONOUR ROLL

Honour Roll In celebration of our 50th year, we recognise that an organisation such as ours cannot be successful without the enormous contribution of our members. The following members have been nominated for special mention on the SCIA honour roll in recognition of their contributions.

Trevor Annetts SCIA Life Member; Founder;

fmr Staff 20 years+ Colin Apps Fmr Director 5 years+ Steve Austin Extraordinary contribution to SCIA and the SCI community Mark Bagshaw SCIA Life Member;

fmr Director 3 years+ Joseph Beecroft SCIA Life Member Paul Bolt Fmr Director 5 years+ Elizabeth Boutet SCIA Life Member David Brawn SCIA Life Member; fmr Director 5 years+ David Brice (Deceased) Fmr Director 5 years+; fmr President Trish Brice SCIA Life Member Ian Brown (Deceased) SCIA Life Member; fmr Director 5 years+ Kevin (Donel) Byrne Fmr Director 5 years + Stewart Calderwood Director 5 years+ Peter Carmichael (Deceased) Fmr Director 5 years+ Tom Clark (Deceased) Founder; fmr Director 5 years+ John Paul Comelli Fmr Director 5 years+ Brian Cook Founding member of Illawarra office Jane Cruise Staff 20 years+ Ian Dalwood (Deceased) Fmr Director 5 years+ Frits Douven (Deceased) Founder Graham Dunne (Deceased) Founder David Fox (Deceased) Founder; AQA Founding President; fmr Director 5 years+ Gary Garrison SCIA Life Member; Social Worker at Prince Henry Hospital Katie Garrison SCIA Life Member Michael Godfrey-Roberts Fmr Director 5 years+ Rosemary Gray (Deceased) Fmr Director 5 years+ Peter Harris (Deceased) Founder Joan Hume OAM (Deceased) SCIA Life Member; fmr Director 5 years+

Sheree Hurley (Deceased) Extraordinary contribution to SCIA and the SCI community Ken Hutchison Founding member of Illawarra office Kathy Ingwerson Extraordinary contribution to SCIA and the SCI community Craig Jarvis Fmr Director 5 years+ Simon Jasprizza Extraordinary contribution to

SCIA and the SCI community Rosemary Kayess Fmr Director 5 years+ Greg Killeen Staff 20 years+; extraordinary contribution to SCIA and the SCI community Monique King (Deceased) Fmr Director 5 years+ ; fmr President Richard Klinger Fmr Director 5 years+; fmr President Eric Krell SCIA Life Member Richard Kramer

Founding member of Illawarra office

Lynette Lee

Fmr Director 5 years+

Michael Magro

SCIA Life Member

George Mamo

(Deceased) Founder

Jenny Mamo

SCIA Life Member

Jo Marnie SCIA Life Member; fmr Director 5 years+ Brian Mayhew

SCIA Life Member

Ellie Mayhew (Deceased) SCIA Life Member; Fmr Director 5 years+; fmr Director of Nursing, Ashton House Continued on page 36 â–ś www.scia.org.au 35

50th ANNIVERSARY HONOUR ROLL ◀ Continued from page 35

Jim McGrath

(Deceased) Founder

Robert (Bob) McKenzie (Deceased) Founder; fmr Director 5 years+ Alan Moore

(Deceased) Founder

Warren Mowbray

(Deceased) Founder; fmr Director 4 years+

Judith Mowbray

SCIA Life Member

John Moxon

SCIA Life Member; fmr Director 5 years+; fmr President

Bronwyn Moye

(Deceased) Fmr Director 5 years +; fmr President

John Munday

(Deceased) Founder; fmr Director 5 years+

Cecil Murr

(Deceased) Founder

Brian Newton OAM

(Deceased) SCIA Life Member; fmr Director 5 years+

Margaret Noonan

Fmr Director 5 years +

David O’Brien

Fmr Director 5 years +

Brad O’Hara

Director 5 years+

David Platford

Founding member of Illawarra office

David Prast

(Deceased) Fmr Director 5 years+

Joe Reeve

(Deceased) Extraordinary contribution to SCIA and the SCI community

Susan Rutkowski

Fmr Director 5 years +

Brian Shirt

(Deceased) Founder; fmr Director 5 years+

Jack Slapp

(Deceased) Founding member of Illawarra office

Tannia Smith

Staff 20 years+

David Smith

Staff 20 years+

Paul Sorgo

(Deceased) Founder

Milena Stampek

Staff 20 years+

David Stern

Staff 20 years+

Wendy Stuart

(Deceased) Fmr Staff; fmr Director; extraordinary contribution to SCIA and the SCI community

Wilson Te Whata

Extraordinary contribution to SCIA and the SCI community

Harry Thomas

SCIA Life Member

Alex Traill

Fmr Staff 20 years+

Tony Varrall

Director 5 years+; fmr President

Stan Wanless

(Deceased) Founder

Betty Weingott

(Deceased) SCIA Life Member

John Wenburn

(Deceased) Founder

Bob Wheeler (Deceased) Extraordinary contribution to SCIA and the SCI community Jean Wheeler

(Deceased) SCIA Life Member

Ken Wynn

SCIA Life Member; Founder

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NEUROMOVES PROFILE

The quiet achiever Terri Wales has been living with an acquired brain injury since 2015 and this year has been attending NeuroMoves in Adelaide. She says attending sessions has not only increased her confidence, but dramatically changed her life in terms of function and mobility.

What service do you receive from Spinal Cord Injuries Australia (SCIA)?

I participate in Activity Based Therapy (ABT) at SCIA’s NeuroMoves program in Adelaide. The staff have been excellent and seem very motivated to help you develop.

How did you hear about this service?

My partner works for a company in the disability sector. He met with NeuroMoves with a view to supporting people with their National Disability Insurance Scheme (NDIS) planning. After meeting their team and discussing how they could work together he thought it would be great if I went to meet them myself to see what they could do for me.

Why did you sign up to the program?

To be able to extend myself and to work towards the possibility of using my right side more and, hopefully, develop the ability to walk again.

What was your experience of NeuroMoves?

The service is fantastic. The staff are very professional and also have a good sense of humour. They’re very thoughtful and thought provoking and can suggest different exercises that work on the different areas of your body.

What’s been the impact of joining the NeuroMoves program for you?

When I first went I was scared. I used to cry almost every time because it’s next to the pool where I used to swim regularly before my accident. After two sessions, I realised how much I really enjoyed going and how the service was really helping me and my confidence.

Who would you recommend NeuroMoves to and why?

I’d recommend it to anyone who has had a spinal or neurological injury or who has difficulties in moving any part of their body. I think they’ll be amazed at the difference joining the program can make.

How has this service changed your life?

Dramatically! Now I can cycle at least 3 km using their equipment, I can use a knife to cut some of my food, I’m walking more with my frame

Terri Wales

and I’m able to stand up straight from a sitting position without any help. I do this with my husband twice a day for a hug, and it’s brilliant!

Can you share a key breakthrough?

Being able to learn to use a knife was a major step forward. Previously, I could only use a fork and my husband had to cut up my meals for me. Being able to stand and cuddle has been wonderful and very emotional, too. NeuroMoves is a fantastic service with so many skills and strategies to support and help people improve their capabilities.

What does SCIA’s NeuroMoves program mean to you?

NeuroMoves is a very caring service that supports people living with a disability to reach their full potential.

Can you share one key goal for the future?

I want to keep attending NeuroMoves and in one years’ time, achieve a personal goal of being able to walk again unaided or with minimal assistance.

One thing you’d like other people to know about living with a spinal cord injury?

I don’t have a spinal cord injury but can’t use the right side of my body much due to the accident in which I acquired my brain injury. I want people to know that life can still be great if you have belief and the support you need. If you’re focused on the future and not the past, it’s not the end – it’s a new beginning. ■ www.scia.org.au 37

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FORTY YEARS IN PRINT: From Quad Centre to Quad Wrangle to Accord

By Shirley Carpenter, Information Manager, Spinal Cord Injuries Australia

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s well as celebrating our organisation’s 50th anniversary, 2017 also represents 40 years since the birth of our magazine, Accord.

Initially launched as Quad Centre in September 1977, 10 years after the establishment of Australian Quadriplegic Association (AQA), the magazine was renamed Quad Wrangle in March 1979. Most recently, in July 2003, it became Accord to coincide with the organisation’s name change from the Australian Quadriplegic Association to Spinal Cord Injuries Australia.

The whole purpose of the magazine in all its formats has been – and still is – to help people connect and to raise awareness of issues of the day.

The magazine’s very first editorial stated: “Consistent with the Australian Quadriplegic Association’s philosophies, Quad Centre has been developed for, and by the disabled for distribution to the disabled, and other interested persons. The aim, to provide the disabled in Australia with a means of communication which can only be fulfilled by you, the disabled and those who care for them, contributing to Quad Centre and making it the best and most informative magazine for the handicapped ever.”

Throughout its long and proud history our magazine has been the voice for people with spinal cord injury and a vehicle to share news, information, issues, movements and reforms.

We thank the many hundreds of contributors over the years who have continued to help make this publication one of the most well respected disability magazines in Australia. ■

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DAILY LIVING

In the company of canines – me and my best friends Before being injured in a motor vehicle accident in 2008 which left her with a C4/C5 spinal cord injury (SCI), Christine Tink admits she hadn’t really considered what life was like for people with disability. Today, Christine runs her own interior design and homewares business, is a wife and mother of three, and is President of Spinal Cord Injuries Australia (SCIA). She is passionate about accessible and affordable travel and increasing opportunities for everyone in a wheelchair.

Christine Tink, President, Spinal Cord Injuries Australia

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have two carers that, once I share with you their behavioural traits, may give you cause to wonder why I put up with them. One is old and deaf and the other is extremely large and forever knocking things over. Neither has had any training for their role in my life and between them, they seem to do nothing.

Despite this, I would never contemplate getting rid of either, and I truly fear the day we will eventually be separated by the inevitable.

Yes, I am referring to my dogs: a for all intents and purposes “rescue” great dane, and an ancient beagle. They’re not assistance dogs so perhaps it’s a misnomer referring to them as carers, but I suppose it’s more that they care about me rather than for me.

They seem to recognise and understand that my disability makes me a weak link in our pack and that I need special consideration.

Or maybe it’s just that they know I’m always around and nothing much happens without my instigation – dinnertime and trips to the park, in particular.

So what exactly do they do? For one, they force me to get out of the house. Our excursions to the dog parks in my area are frequent and regular, and my dogs certainly ensure that I NEVER forget. Like clockwork, I am regularly nudged and presented with two pleading faces and wagging tails.

I’m probably not alone in saying that my accident dictated that we move house and that I start working from home. I’ve found being in a wheelchair is sometimes not all that conducive to making new friends in the community. But my canines’ insistence on outings has resulted in me making numerous

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social connections and acquaintances, and not only at the dog park. I’m sometimes accosted by people saying, “You must live near me – I see you out with your dogs!”

Secondly, my dogs seem to feel it’s their duty to ensure I smile and I’m happy. A sympathetic head in my lap, a nudge of my hand, or an offer to play with a smelly dog toy is never far away. The dane knows that nuzzling and nibbling at my ear never fails to make me laugh.

With a sense of smell that is 100,000 times greater than ours, and an area of their brain dedicated to odour recognition that is proportionally 40% larger than the same area in the human brain, dogs detect our every mood and action – even when we try to fool them. I have read that dogs can smell pheromones that we release in bodily fluids. In other reports, it’s not pheromones but rather a change in the hormones emitted by the human body that their noses can detect. Whichever is correct, it’s still pretty impressive.

I watched my husband recently pretending to be annoyed with our great dane. Despite the performance, our boy thought he was in trouble and was unsure of how he should behave. Then he approached my husband and sniffed near his mouth – and he was instantly in on the joke.

And finally, there’re all the other times they make me laugh or show they care. It’s their desire to rescue me when I’m floundering around in the pool attempting to swim.

It’s their sheer delight when I finally come home after they’ve been waiting in the front

DAILY LIVING

window for what must seem like an eternity.

It’s the way they follow me around the house and take up a position wherever I am. The little old deaf guy likes to sleep with his rear pushed up against my wheelchair in case I move without him noticing.

An actual assistance dog could be on my radar, if I didn’t already have two such faithful canine friends. I’ve heard that, as opposed to the dubious talents of my dogs, the talents of assistance dogs are endless – retrieving dropped items, pulling bed blankets up or down, pushing lift buttons, barking as an alert, or opening and closing doors. Assistance dogs can be trained for a specific purpose or skill. For example, great danes have a tendency to lean against you (who would know why?), and this idiosyncrasy has been put to good use to support people less stable on their feet. In the same way that my dogs remind me when it’s time to go for a walk, others can be trained to alert someone when medication is due.

I’ve wondered about trying to teach my old dogs new tricks. There’s an organisation called Minddog (www.minddog.org.au) that I’m told could possibly help with this training and which may even lead to their authorisation as fully qualified, coat-wearing therapy/ assistance dogs. My only hesitation is that I suspect my dogs may not pass Minddog’s prerequisites – particularly in regard to being quiet and well-behaved in public!

But it’s not all a bed of roses. Dog ownership does come with its drawbacks and question marks. I read a blog recently which was written by a guy with an SCI who lives in the United States. He wrote about his decision to give his assistance dog back after a trial period. In his case, he found its care and feeding a burden that, in his situation, outweighed the benefits. For the vast majority of people, the costs are a major consideration, but in the world of the disabled it is also the physical – can you, or someone with you, physically feed and be responsible for looking after your dog?

I have numerous tales of times when mine have been a problem. I was walking one dog with a new human carer several years ago and she adamantly refused to collect his poo, despite having use of the gloves and bags I carry on my wheelchair. In New South Wales it’s an offence punishable by fines of up to $880 if you don’t act responsibly and clean up after your dog as required. And speaking of walking, I’d like a dollar for every time

Christine and her great dane, Baxter.

I’ve watched a human carer, unfamiliar with dogs, trying to put a leash on an excited beagle who is ecstatic about going for a walk.

Not so long ago I had a human personal carer for quite a few months who my great dane seemed frightened of, and he simply wouldn’t allow her near me. We had to lock him outside where he became frantic and barked incessantly until the neighbours complained. While my carer was in the house, I had to sit outside with him. We tried everything to “introduce” them, even her trying to feed him, but his response was always the same. Finally, and tragically, she left after a shift, never to return due to a sudden and massive health issue. And I was left with questions.

The first question to ask yourself should be, “Can I care for my canine carer?” In an ideal world everyone should have a dog, but we all know it’s not an ideal world. There are pros and cons for everything, including dog ownership. For me, I know I will always have a dog or two around for the ready-made inbuilt traits they come with, but who knows where this partnership could go? ■ www.scia.org.au 41

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INFORMATION AND RESOURCES Undefeated: From Tragedy to Triumph by Marc Buoniconti Son of NFL Hall of Fame legend Nick Buoniconti, Marc enjoyed an admittedly reckless lifestyle until a football injury changed his outlook and pushed him to dedicate himself to helping others. What began as a game-changing moment quickly turned life-changing.

The same drive to push the limit in everything he’d encountered was the catalyst for Marc’s resolve to get off a ventilator, beat the odds, and turn catastrophe into a life of purpose.

Marc’s battle to live a full life was the genesis for nonprofit The Miami Project to Cure Paralysis and The Buoniconti Fund, which to date has raised more than $450,000,000 for research into the treatment of spinal cord and brain injuries.

Borrow from the SCIA library or visit: http://amzn.to/2xAjuQA It’s Not Yet Dark: A Memoir by Simon Fitzmaurice In 2008, Simon Fitzmaurice was diagnosed with ALS, or Lou Gehrig’s disease. He was given four years to live. In 2010, in a state of lung-function collapse, Simon knew with crystal clarity that now was not his time to die. Against all prevailing medical opinion, he chose to ventilate in order to stay alive. Told in simply expressed and beautifully stark prose, it is an astonishing journey into a life that, though brutally compromised, is lived more fully than most. Written using an eye-gaze computer, It’s Not Yet Dark is an unforgettable book about relationships and family, about what connects and separates us as people, and, ultimately, about what it means to be alive.

Borrow from the SCIA library or visit: http://amzn.to/2yen2dg Don’t Worry, He Won’t Get Far on Foot by John Callahan Is it possible to find humour – corrosive, taboo-shattering, laugh-till-you-cry humour – in the story of a cartoonist who’s both a quadriplegic and a recovering alcoholic? The answer is yes, if the cartoonist is John Callahan – whose infamous work graced the pages of Omni, Penthouse, and The New Yorker. Without self-pity or self-righteousness, this liberating book tells us how a quadriplegic with a healthy libido has sex, what it’s like to live in the exit-less maze of the welfare system and how a man with no reason to believe in anything discovers his own brand of faith.

Borrow from the SCIA library or visit: http://amzn.to/2yb2o05 The Accessible Home by Deborah Pierce The Accessible Home goes beyond ramps and grab-bars to help those faced with disabilities, accomplish home accessibility on a deeper level. Architect Deborah Pierce leads readers through the steps of universal design—from hiring the right architect to creating a pleasing space with the final details. Plus, an insider’s look at 25 case studies shows that the best design is built in, not tacked on, and that “accessible” can be both beautiful and functional.

Borrow from the SCIA library or visit: http://amzn.to/2yFEdHH

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.

www.scia.org.au

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SOCIAL MEDIA & EVENTS

Events with our most popular posts from our social media pages:

INDUSTRY Rob Dempsey sustained a C5 spinal cord injury in 2007, at age 19, after losing control of his Hilux when he hit a kangaroo. While he was in rehabilitation, he jumped at the chance get back onto the road with the help of PME Auto Conversions.

NOVEMBER 15 - 17 November 2017 2017 Australian & New Zealand Spinal Cord Society Annual Scientific Meeting Brisbane Convention & Exhibition Centre, Brisbane, QLD www.dcconferences.com.au/anzscos2017/home

With warmer weather approaching, South West Rocks (located on the MidNorth Coast of NSW) now has a beach wheelchair for locals and visitors to use free of charge! Please contact Seabreeze Beach Hotel on (02) 6566 6205 to book.

DECEMBER 3 December 2017 International Day of People with Disability. www.idpwd.com.au

Check out this highlight from our NeuroMoves by SCIA site in Lidcombe, NSW! NeuroMoves centres are in Adelaide, Brisbane, Melbourne, Perth, Sydney and Lismore. Let us help you smash your fitness goals by calling 1800 819 775.

8 - 9 December 2017 South West Disability Expo Whitlam Leisure Centre, Liverpool, Sydney, NSW www.southwestdisabilityexpo.com.au

JANUARY Next week is Spinal Cord Injury Awareness Week! Challenge what you think you know about the daily lives of people living with a spinal cord injury. #ICan #SCIAW Show your support and help raise awareness by sharing our video.

6 - 28 January 2018 Sydney Festival Sydney, NSW www.sydneyfestival.org.au/info/accessibility

FEBRUARY 15 - 16 February 2018

One year ago, Hayden Marshall sustained quadriplegia whilst jumping on his trampoline. Watch his amazing journey of recovery at our NeuroMoves

by SCIA Melbourne site, as shared on #TheProject and #TenNews.

National Disability Services (NDS) NSW 2018 Conference Hilton Hotel, Sydney, NSW www.nds.org.au/events-and-training/conferences

For information on events in your local area please visit: www. scia.org.au/get-involved/events

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ActiveReach™ technology is the ultimate advantage in accessing your environment.

By combining 14” of seat elevation and Corpus seating functions, Permobil’s ActiveReach™ technology enables you with up to 20º of forward tilt. This can be used for reaching beyond obstructions, into high cabinets, or even assist in transfers. Truly putting your world within reach.

FEATURING

For more information please contact: Email: info.au@permobil.com l Phone: 1300 845 483 www.permobil.com.au

SAVE THE DATE

16 -17 MAY 2018 Melbourne Showgrounds

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

For more information phone 1300 789 845 or visit www.atsaindependentlivingexpo.com.au Media Partner

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Now the opportunity to trial our equipment in a VW Transporter & supervised by a driving instructor

THE ULTIMATE DRIVING CONTROLS HERE IN AUSTRALIA Total Ability provides innovative, high quality and safe driving solutions to the Australian market. driving controls for your independence

First-hand experience in Europe and working throughout Australia with workshops, occupational therapists and driving instructors means individualised assessments and installation of the most suitable equipment. Our philosophy is about getting people safely behind the wheel and driving to the best of their ability. Call us today to discuss your needs.

• Satellite Accelerator • Over-Ring Accelerator • Combined Brake & Accelerator • Push-Pull Brake & Accelerator

List of installers nationwide at:

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• Push-Radial Brake & Accelerator • Voice Command for auxiliary controls • Joystick Steering • Foot Steering

Total Ability - Exclusive distributor for: