Accord Summer 2016

Summer 2016

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32 Features

From the CEO From the President Expo 2016 News Fundraising Research

26 28 Daily Living Health

32 34 38 42 44 46 48 50 52

Travel Policy and Advocacy Regional Round Up

14 See What’s Possible 20 Exquisite

Information and Resources Technology Review Member Profile Events Social Media

Cover Image: Ame Barnbrook and Dennis Critchley sailing a Skud 18 on Sydney Harbour Photo credit: Robert Barnbrook

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

Editor Helen Borger

Designer Shauna Milani

Sub-editor Liani Solari

Advertising accordadvertising@scia.org.au

Proofreader Rosemary Gillespie

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

FROM THE CEO

PETER PERRY

Taking the NEXT STEPS With some very exciting developments about to occur in our exercise services in 2016, including the opening of a dedicated centre for children in Sydney, a new centre in Adelaide, and a new name, NeuroMoves, I wanted to share with you a letter written by Peter Randall, the husband of one of our clients. As always, the way in which our clients experience our services is the most important thing, and I think this letter says it all: “The medical services and therapies provided in our hospitals are very good.

The excellent work of social workers, community care agencies and other hospital teams ensured a smooth transition to life outside the hospital. Continuing contact from various hospital teams has been invaluable and is very much appreciated.

The way in which our clients experience our services is the most important thing.

While in hospital, my wife was given intensive physical therapy five days a week, which helped greatly in her recovery. There was a marked step down in intensity and frequency of therapy available after discharge from hospital.

The local rehabilitation program consisted of one physical therapy session and one occupational therapy session per week.

After three months my wife was told that her recovery had ‘plateaued’, there were others requiring the rehabilitation service and she was to be discharged.

For those who sustain a spinal cord injury, recovery (even partial) is often slow and requires a great deal of hard work over a long period, guided by therapists with the relevant expertise. After discharge from hospital, my wife believed there was a window of opportunity for her to make every effort to recover as much function as she could. Earlier this year she applied for a place in 2

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Spinal Cord Injuries Australia’s (SCIA) Walk On program in Sydney, now part of NeuroMoves exercise services.

She had previously benefited from SCIA through its excellent peer support work at Prince of Wales Hospital and the SCIAsponsored respite accommodation, which allows a short break with family after long months in hospital.

NeuroMoves has helped my wife enormously.

• Her general strength and mobility has improved. Standing is greatly improved and she can now walk with a walker across the room—unimaginable before the program.

• She formerly suffered neuropathic pain, often severe, on most days. The severity and frequency of the pain is now greatly reduced.

• Her general health has improved. Her ankles (previously swollen) and feet (blue/purple due to poor circulation) are now more normal.

• Her morale is improved.

NeuroMoves, although expensive, is cheaper than attending a private physiotherapy practice. It has been well worth the time and expense to attend Walk On; however, the effort of travelling to Sydney twice or three times a week is not inconsiderable.

It is in the area of post-hospital treatment of people with spinal cord injury that an organisation such as SCIA fills gaps and supplements what is currently available to people. SCIA, a charity set up by people with spinal cord injuries, is already filling this gap in Sydney, Brisbane, Melbourne and Perth. It is now launching NeuroMoves in Adelaide.

This has all arisen as a result of requests by injured people. There is a need for such therapy in the other locations to improve the quality of life of those unfortunate enough to injure their spinal cord.”* * This letter has been edited slightly with the author’s consent, for space reasons. ▪

JOAN HUME FROM THE PRESIDENT

Emergency Response NEEDS A RETHINK Some weeks ago, Tannia Smith, a longstanding employee of Spinal Cord Injuries Australia (SCIA), and I attended a forum on disability services in New South Wales (NSW) to inform and advise government and community delegates from the Philippines about setting up a local disability resource centre. The forum was held in an upstairs meeting room at the Ryde-Eastwood Leagues Club.

About two-thirds of the way through the forum, the lights suddenly went out. A loudspeaker boomed out that there was a blackout, there was an hour-and-a-half of emergency lighting left, and would we please proceed to the nearest exit.

Our group decided to stay and finish the forum, especially given the distance the Filipino delegates had come and the fact that there was only an hour left to go. That would still leave us with plenty of time to get out of the building. Or so we thought.

At about 4pm we exited the meeting room and, on trying to access the lift, were informed that the lifts were now inoperable, the blackout was not internal but community-wide and the management wanted those of us in chairs to wait until the blackout was “fixed”.

“But,” I protested, “if it’s throughout the whole suburb it could take several hours or even a day or so to fix, depending on what the problem is. There is no way we are waiting around that long in the dark.”

I asked the management representative what was the club’s evacuation procedure for people with mobility disabilities in an emergency. “We don’t have one,” he informed us. I then requested that management call Fire and Rescue to evacuate the three of us in chairs, two of which were heavy power chairs.

“But it’s not an emergency,” insisted management. “We would only be wasting their time.”

“Well it’s an emergency for us when we can’t get out of the building,” I said.

“Besides, evacuation of people like us is not a waste of their time; it’s actually their job.”

Still, the management wouldn’t budge on ringing emergency services until I threatened to ring them myself. The absurdity of this exchange was only heightened when a club employee in a hard hat, waving a torch, bounced up to us cheerily: “Everything okay here?”

Within five minutes the Fire and Rescue team turned up and, with courtesy, collaboration, efficiency and good humour, proceeded to help us, one by one, down the circular staircase. Tannia’s chair weighed about 200 kilos, so her safe removal presented the greatest difficulty. She was assisted into a manual chair and five of the Fire and Rescue team were needed to carry her power chair down separately.

“We hope that out of a frustrating and potentially dangerous situation some positive changes in leagues clubs will emerge soon.”

The whole procedure took about 45 minutes.

At no stage were any of us in danger, but if management had had their way we would have been unnecessarily trapped in the dark for another four to five hours.

When I’d finally calmed down, a few days later I contacted the CEO of Leagues Clubs Australia, Peter Turnbull, to see what could be done to rectify the lack of appropriate emergency policy and procedures for people with disabilities. He met with a group of us at SCIA and has commenced the process of arranging collaboration with Fire and Rescue NSW to hold a series of seminars for club management and staff to address those issues.

We hope that out of a frustrating and potentially dangerous situation some positive changes in leagues clubs will emerge soon. ▪

EXPO 2016

SCIA Independence Expo 2016 The Spinal Cord Injuries Australia (SCIA) Independence Expo is the premier event showcasing an extensive range of lifestyle and disability products and services to empower people with physical disabilities.

The two-day Expo runs from Friday 15 April to Saturday 16 April at Australian Technology Park, Eveleigh, close to Sydney’s CBD. It’s open from 10am to 4pm each day and entry is free.

Created specifically for people with physical disabilities, the Expo offers a chance to investigate and trial many products and services that promote independence and social inclusion. It will touch all aspects of people’s daily lives, including social life, relationships, work and other aspirations. People will discover the latest equipment, technology and services, plus innovations in the things that make life fun: travel, art, socialising and sport.

A range of organisations and individuals will be showcasing products and services and presenting workshops on the following:

• Assistive technology • Sporting activities • Leisure • Travel • Legal services • Art and crafts • Vehicle modifications • Building and construction • Relationships • Support and rehabilitation services • Disability sector innovations • National Disability Insurance Scheme updates • Personal experiences with disability CEO of Spinal Cord Injuries Australia Peter Perry says, “The SCIA Independence Expo will inspire people with physical disabilities in endless ways to enhance their independence at home, in their workplace, during leisure activities and in any pursuit they want to participate in.

our guide to the “The latest technology and services to help people with physical disabilities live as they choose will be on display. There will be ample opportunity to question the technology and service providers, attend workshops, watch demonstrations and ‘test-drive’ the innovations.

“This will allow attendees to make informed decisions about the services and technology available to meet their needs now and into the future as the NDIS rolls out.”

The SCIA Independence Expo workshop program will offer practical information for people with physical disabilities. The Expo will also benefit family, friends, carers and professionals in the sector. All attendees will learn from real life examples and gain practical skills and knowledge.

Register at www.scia.org.au/expo or call 1800 819 775 and go in to the draw to win a $500 gift card.* *For full terms and conditions visit www.scia.org.au/expo

Sponsored by

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EXPO 2016

Getting to Expo – Australian Technology Park, Sydney BUS

Car

Train or Bus Limited accessibility is available from Redfern Station with a lift operating on platforms 6 and 7. To access these platforms, visit www.transportnsw.info.

Central and Newtown stations are the closest fully accessible stations. From Central, bus numbers 308, 309 and 310 stop closest to ATP (coming from Central) on Regent Street and (going to Central) Gibbons Street.

Taxi

The entrance to the Australian Technology Park (ATP) car park is from Henderson Road, Eveleigh.

Visitor parking is available at 8 Central Avenue (Media City Building).

Collect a ticket from the boom gate and drive through to the car park, located at Ground Floor.

Parking prices are as follows: ATP is a short walk from Redfern Station. • First 1/2 hour: $6 • 1/2 hour to 1 hour: $12 If you are not a wheelchair user you can • 1–3 hours: $20 exit the via Platform 10. Walk past the Water Tower apartment block and follow • 3+ hours (max daily rate): $30 the walkway through to ATP. Pedestrian *Limited free parking is available. access to the Locomotive Workshop is Please note, SCIA has no affiliation, through Bay 1, 4 and 8. control or influence over the ATP car To plan your trip call 131 500 or visit park or parking prices. www.transportnsw.info

*Information correct at time of publishing

The entrance to Australian Technology Park (ATP) for taxis, deliveries and coaches is from the corner of Garden and Boundary streets. Visit www.taxifare.com.au to check the approximate travel costs. To book an accessible taxi call 8332 0200.

Expo

Bay 8 Locomotive Street, Eveleigh, NSW

ndependence expo 15–16 April 2016 Spinal Cord Injuries Australia

Funding to attend the Expo Thanks to the Department of Social Services, SCIA is offering funding to help people with disabilities from around Australia attend the Expo by helping to part cover some costs like care, transport and accommodation. Funding support will be paid as a reimbursement after the person has attended the Expo and may be capped. Visit www.scia.org.au/expo or call 1800 819 775. Entry to the Expo is FREE.

to Expo in 2016: • Live streaming of workshops • Arts exhibition • Craft market stalls

www.scia.org.au 5

NEWS

New trains scrutinised A life-sized model of the trains to run on the Sydney Metro Northwest rail line was put under the accessibility microscope late last year.

The new rail line is currently under construction and expected to start operating in 2019. It will be Australia’s first fully automated driverless train network.

Spinal Cord Injuries Australia’s (SCIA) Policy and Advocacy Officer, Tony Jones, inspected the life-sized model last November at Castle Hill Showground.

The model featured a three-quarterlength carriage and platform inside a large marquee. The trains will feature two dedicated wheelchair accessible spaces per carriage. The lead carriages (carriages at each end of the train) will also feature an additional dual-purpose space, where the seats flip up to accommodate a wheelchair, pram or other item. Overall, there will be 12 dedicated wheelchair accessible spaces per train and two dualpurpose spaces.

Entry to the carriages will allow good manoeuvrability for wheelchair users.

Among other features, 26 CCTV cameras will be mounted on each train, including outside the trains.

The carriages also feature push-button ‘help points’ where users can speak to someone for assistance. However, these are under review to improve accessibility, for easier activation.

Tony says the trains and stations will also include the following: electronic signage displaying real-time customer trip information above the train doors as well as highly visible ‘next stop’ information; hearing induction loops in the vestibules of each train and at all stations; customer service attendants at every station and moving throughout the network during the day and night; and each carriage has three doors per side, making it faster for customers to get on and off the train.

For more on the new trains, visit www.nwrail.transport.nsw.gov.au ■

Beach House reopens in Coffs Harbour

SCIA goes mobile

Accessible holidays are back on the itinerary with the refurbishment of the Beach House in Coffs Harbour now complete.

We are pleased to announce that the Spinal Cord Injuries Australia (SCIA) website has had a facelift and is now accessible on a mobile phone or tablet.

Run by Spinal Cord Injuries Australia (SCIA), the Beach House has been refreshed thanks to the generous $27,000 grant from the Newcastle Permanent Charitable Foundation.

A beach holiday with family is an Australian tradition, but it can be difficult for people with spinal cord injury due to a lack of accessible accommodation.

However, the Beach House provides this opportunity all year round. Families love visiting the house because they know it is completely accessible.

The grant has paid for a variety of minor repairs and a refresh. Newcastle Permanent Charitable Foundation Chairman Michael Slater says the refurbishment will benefit many people living with a spinal cord injury and provide them with a highquality facility to use for short-term holidays in Coffs Harbour.

Peter and Lenore Brooks from Tamworth, parents of Dallas who has quadriplegia, 6

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The new-look website contains all the information and resources it always had; however, it has been refreshed to reflect SCIA’s evolution and in preparation for the full roll out of the National Disability Insurance Scheme (NDIS). enjoy staying at the Beach House. “It’s a wonderful service that keeps people with spinal cord injury and their families connected,” says Peter.

Peter Perry, Chief Executive Officer of SCIA, thanked Newcastle Permanent Charitable Foundation for the grant, saying the Beach House is much improved and ready for people’s summer holidays.

SCIA welcomes local business interested in helping maintain the Beach House by donating goods or services; contact SCIA’s Claire Moylan on 1800 819 775 or email scia@scia.org.au ■

Head of Marketing and Fundraising, Fiona Jackson, says the website houses some great resource information for people with spinal cord injury (SCI). The small changes to the website should make it easier to locate this information and access the latest SCI news.

“The website is SCIA’s key communications and marketing tool; however, it wasn’t really accessible on mobile devices. We have made some minor changes to the website and developed it specifically for audiences wanting to access information on the go,” she says.

NEWS

NeuroMoves heads to Expo Discover how Spinal Cord Injuries Australia’s (SCIA) NeuroMoves exercise services enhances the independence of people with disability at the SCIA Independence Expo in April.

Clients report many other benefits including improved general health, greater positivity, increased confidence to participate in the community and a reduction in care hours.

NeuroMoves is an individually designed intensive activity-based exercise program to assist people with spinal cord injury to improve and maximise their functional ability and lead a more independent life.

The program involves intense, dynamic, weight-bearing exercises performed out of the wheelchair, one-on-one with qualified exercise physiologists or physiotherapists.

Each client’s individually tailored exercise program is aimed at developing skills necessary to achieve specific functional goals and comprises two hour sessions up to three times per week at a NeuroMoves facility.

NeuroMoves is a community-based program for people with disability following their discharge from hospital.

A pilot study conducted with SCIA’s clients demonstrated improvements in general mobility, quality of life, muscle strength and psychological wellbeing.

Improvements in independence were also found.

Would you prefer to receive accord by email?

We are excited to offer accord as a digital magazine. To help reduce costs and environmental impacts, let us know if you prefer to receive accord via email only by emailing your full name, email address and postal address to scia@scia.org.au and we will update your preferences.

Sessions involve strengthening of the core/trunk and upper and lower limbs; whole-body exercises; partial or full weight-bearing activities; balance and postural control exercises; locomotor training; and functional electrical stimulation, including cycling, stepping and standing activities.

Visit NeuroMoves exercise services at the SCIA Independence Expo, 15 and 16 April 2016, Australian Technology Park, Sydney. ■

Join in and make a difference Researchers from the School of Public Health and Preventive Medicine at Monash University would like to speak to people with spinal cord injury for a study they are conducting. With the help of Spire (Spinal Injury Resource and Support Network), the university is looking for people willing to discuss their experiences of managing conditions that develop after spinal cord injury, such as pressure areas and bladder problems.

Researchers want to gather information on the services these people use, the information provided to them and the interactions they have with health workers. They also want to know about the social, work and financial impacts related to the management of these conditions.

Information gathered for this project will improve understanding of the

conditions that develop after spinal cord injury, how they affect people’s lives and whether care needs are being met. The findings will inform improvements in care.

Involvement consists of a one-off telephone interview at a time that is convenient for the participant.

For further information about this project, phone Sandra Braaf on (03) 9903 0319 or email sandra.braaf@monash.edu ■

Sydney University honours Joan Hume Joan Hume OAM, President of Spinal Cord Injuries Australia, has received The University of Sydney Alumni Award for Community Achievement.

The university honoured Joan for her outstanding advocacy work for people with disabilities and her efforts to improve disability services nationally and internationally.

Railway in 1979, was a founding member of Disabled Peoples’ International (DPI) in Australia and New Zealand, represented DPI at the United Nations conference in New York in honour of the 10th anniversary of the International Year of Disabled Persons in 1990, and was a founding member of Women with Disabilities Australia.

Among her many illustrious achievements, Joan organised a protest by people with disabilities at the opening of the inaccessible Eastern Suburbs

Joan completed a Diploma of Education and Bachelor of Arts in 1969 and a Master of Arts in English Literature in 1984 at The University of Sydney. ■ www.scia.org.au 7

NEWS

The time for talk is over Action, not just a positive attitude, is required to meet the employment and customer service needs of people with disability.

The Australian Network on Disability (AND) released the first Disability Confidence Survey report at the end of last year. It showed that 89 per cent of small-to-medium businesses believe their organisation has a positive attitude to employing suitably skilled people with disability and one in three believe they have employed people with disability.

Also, 80 per cent believe they have some customers with disability and 53 per cent of these say they have done something specific to assist customers with disability in the past year.

However, one in five don’t think they have customers with disability, and 60 per cent of these have not acted to find out if their customers have disability. And one in five don’t know if their staff have disability.

“The overwhelmingly positive attitude to both employees and customers with disability is extremely heartening but more action is needed,” says Suzanne Colbert, CEO of AND. Suzanne says the cost of ignoring the needs of people with disability is high. “In the UK, studies have shown that as many as 83 per cent of customers with disability had walked away from inaccessible services.

less talk. . more actio n

“There is also a risk that companies may not be fulfilling their obligations under the Disability Discrimination Act 1992 (DDA).”

AND is developing an Australian Access and Inclusion Index, which will be available in 2016. For more details, visit www.and.org.au ■

NEWS

NRL and SCIA partnership in full swing to support injured players

Greg Killeen leads the way

The National Rugby League (NRL) has partnered with Spinal Cord Injuries Australia (SCIA) to support players who sustain a severe spinal cord injury while playing rugby league.

“We are committed to sharing our expertise and helping injured players to maximise their independence, so they can take control of their own lives again.”

Greg Killeen, Senior Policy and Advocacy Officer at Spinal Cord Injuries Australia (SCIA), was a standout finalist at the 2015 National Disability Awards.

Most recently, the NRL and SCIA designed and implemented a Case Management Framework (CMF) which starts providing coordinated support as soon as a player sustains a severe spinal cord injury.

An outstanding advocate for people with disability, Greg was an obvious inclusion in the rollcall of high-achieving finalists.

He has been at the forefront of advocating for better access and transport for people with disability for 30 years.

The partnership ensures players who suffer a catastrophic spinal injury receive specialist advice from the moment of injury and funds research initiatives to improve outcomes for injured players in the future.

Men, women and children playing in junior teams right through to first grade and national teams will benefit from the partnership.

“Ensuring our players who sustain a catastrophic injury, and their families, receive the right advice and support is vital,” said Ellen Beale, Strategic Partnerships Manager, NRL. “SCIA’s expertise is central to the success of the partnership as it is a peak body recognised for its advice, advocacy, research and guidance for individuals who sustain a spinal cord injury.”

Specialist support, advice and training are necessary for people who experience a spinal cord injury.

“SCIA is delighted to join forces with the NRL to assist players and their families,” said Peter Perry, CEO, SCIA.

“The CMF helps injured players and their families navigate health, medical, welfare, education, work and other systems, and will contribute to players achieving improved rehabilitation outcomes,” said Peter.

The NRL funds the CMF on an as-needs basis, covering unmet rehabilitation and care requirements and players’ existing financial commitments where no alternative exists.

Support is also extended to players’ immediate families to help meet their travel, accommodation and welfare expenses while players are in hospital or rehabilitation.

“The NRL views the additional CMF funding as integral in helping injured players work towards living as independently as possible,” said Ellen.

“SCIA thanks the NRL for making these funds available and doing all they can to help players take control of their own destiny,” added Peter. ■

Since taking up the post of Senior Policy and Advocacy Officer at SCIA in 2009, Greg has made an impression on government and non-government committees, influencing local, regional, state and national policies and procedures.

In announcing the finalists, Federal Minister for Social Services Christian Porter said: “There have been some fantastic achievements and it has made the job of the independent judging panel difficult.”

The winners were announced at a ceremony on 25 November 2015 at Parliament House in Canberra.

Although Greg didn’t pick up an award, he is a winner in the eyes of SCIA, its members and all those he works with.

Keran Howe took out the Lesley Hall Award for Lifetime Achievement in Disability. Visit http://bit.ly/nat_awards for all the winners and finalists. ■

Win a copy of Tattoo Tales Series one of ABC TV’s fly-on-the-wall documentary Tattoo Tales about a tattoo studio in Bondi is up for grabs.

This peek inside the tattoo industry sees Heidz Haydon, Spinal Cord Injuries Australia’s (SCIA) Education Officer, starring in one of the episodes.

Heidz wanted to get a tattoo for as long as she could remember, but it wasn’t until a motorbike accident left her with paraplegia that she decided to go ahead and get one. She tells her story on her skin through a series of colourful and artistic tattoos.

The first two people to email accordeditor@scia.org.au with “I would love a copy of Tattoo Tales” in the subject line will receive a free DVD of ABC TV’s Tattoo Tales series one.

Don’t forget to include your name and address in the body of your email so we know where to post the DVD. ■

www.scia.org.au 9

NEWS

Waterski Wisemans Ferry

Ashley Saunders, taking on the waterski wake

Enjoy being towed slow or fast and learn to cross and jump wakes with the New South Wales Water Ski Federation— Disabled Division at Wisemans Ferry.

People of all ages with various physical disabilities or vision impairment are welcome at the open day. You can try out and develop your water skiing skills.

The NSW Water Ski Federation has various modified sit skis and other equipment, including life jackets, ski ropes and handles that are available to all skiers.

The open day is Saturday 5 March, 2016 at NSW Ski Gardens, 2916 River Road, Wisemans Ferry, 2775.

Training days are also held for skiers who are serious about the sport. On these days you can train with a coach or professional skier and, depending on your goals, possibly go on to compete in state, national and world titles.

The NSW Water Ski Federation is a not-for-profit organisation run by volunteers.

Visit www.disabledwaterskinsw.com for more details. ■

Matthew Pierri is off to Oxford Matthew Pierri, a Spinal Cord Injuries Australia (SCIA) NeuroMoves client from Melbourne, has been awarded a 2016 Rhodes Scholarship for postgraduate study at the University of Oxford.

Matthew completed a Bachelor of Arts majoring in Media and Communications and Chinese Language at the University of Melbourne with First Class Honours and is due to complete a Juris Doctor degree at the Melbourne Law School this year.

He hopes to study a Master of Public Policy at the Blavatnik School of Government, University of Oxford. Matthew said he was thrilled to receive the scholarship, which will allow him to further his ambition to achieve social change at a systemic level.

“Over the last few years, I have advocated to change the perception and treatment of people with spinal cord injuries and I strongly believe that progressive and practical public policy is needed to address increasingly complex and multifaceted social problems,” Matthew says.

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“By encouraging a positive, open-minded approach to disability, I believe we can remove the common, conservative misconceptions of the achievable quality of life for those living with disabilities and permit people to reach their full potential.

“At Oxford, I hope to gain the interdisciplinary problemsolving and policy implementation tools to become a leading strategic thinker within the public sector.”

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Jessica Hansson, Team Leader of SCIA’s Exercise Services in Melbourne, says, “Matt continues to inspire both staff and clients with his achievements and can-do attitude. Between all his final exams and interviews, he is also organising a fundraiser to help another person with spinal cord injury attend SCIA’s Exercise Services. We are all so proud of him...” ■ 10 accord magazine hireup.ads.quarterpage.indd 1

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NEWS

Senate pushes for Royal Commission on violence A Senate Committee has called for a Royal Commission into the violence, abuse and neglect perpetrated against people with disability in institutional and residential settings.

The cross-party committee of Government, Australian Labor Party and Greens members found the violence, abuse and neglect of people with disability is widespread.

“Throughout this inquiry, the evidence presented from people with disability, their families and advocates, showed that a root cause of violence, abuse and neglect…begins with the devaluing of people with disability,” says the committee’s report.

“This devaluing permeates the attitudes of individual disability workers, service delivery organisations and, most disturbingly, government systems designed to protect the rights of individuals.”

The committee recommends establishing a Royal Commission with investigative powers that is funded and empowered to visit institutions, as it would enable a more thorough investigation into instances of violence, abuse and neglect.

The committee also recommended establishing a national disability complaints mechanism with broad functions and powers to protect, investigate and enforce findings in relation to violence, abuse and neglect.

National workforce and workplace regulation to address systemic workforce and workplace issues that increase the prevalence of violence, abuse and neglect have also been recommended.

Among a number of other recommendations, the committee wants to ensure people with disability have access to justice by addressing systemic barriers, including legal capacity, supported decision-making, guardianship and indefinite detention of people with disability.

For more details, visit http://bit.ly/senate_push ■

What’s happened to Centrelink news?

I would like to throw an idea out there for general discussion.

We used to receive a glossy several-page e-bulletin, News for people with disability, from Centrelink for people on the Disability Support Pension (DSP). It included the odd warning, but also positive stories and news of upcoming public events etc similar to Spinal Cord Injuries Australia’s (SCIA) regular email newsletters, from memory.

However, is it just me, or has News for people with disability become more threatening, or mean-spirited, in nature in recent times?

What’s the general consensus?

Kind Regards Jason Ayres Spinal Cord Injuries Australia member Mascot To have your say, email accordeditor@scia.org.au

GoGet gets accessible

Car hire is currently exempt from complying with the standards.

The GoGet vehicle-sharing service is planning to roll out wheelchairaccessible vehicles, starting in Sydney.

GoGet has also undertaken a recent electronic survey of people with disability, their family and friends to find out the preferred location for the first two wheelchair-accessible vehicles. SCIA assisted GoGet by distributing its survey through social media and other networks and will provide an update when information becomes available.

Spinal Cord Injuries Australia (SCIA) understands that the type of vehicles and modifications are still in the planning stage. Meanwhile, SCIA has recommended that the vehicles comply with the minimum allocated space in the Disability Standards for Accessible Public Transport 2002. This will ensure that the majority of wheelchair users are able to use the accessible vehicles.

Visit GoGet for more details: https://www.goget.com.au/ ■ www.scia.org.au 11

FUNDRAISING

Organise an event for SCIA Ohana Day

Rooftop Raiser

After a family friend suffered a spinal cord injury, events student Cassie-Ann Scott decided she wanted to support SCIA and other people who had been through a similar experience. Knowing there was a lack of information on the Gold Coast for people with spinal cord injury, she wanted to organise an event that not only raised valuable funds but also awareness of the issues.

Matthew Pierri, a former client of SCIA’s exercise services— NeuroMoves—organised a fundraiser, with a group of friends, for NeuroMoves in Melbourne. Between them they secured sponsorship from local businesses and organised an amazing rooftop garden party with over 150 people in attendance. They raised a phenomenal $18,003 (pictured below), which will help more people to access the valuable services of NeuroMoves.

On Ohana Day, families descended on Roughton Park for fun and entertainment, including music, a sausage sizzle, a raffle, market stalls, a bouncing castle and face painting. SCIA regional staff were on hand to talk about SCIA services; they said it was wonderful to see the community coming together to support a local resident with a spinal cord injury.

Another big thank you to all the fundraisers who have joined Team SCIA— your dedication to Spinal Cord Injuries Australia (SCIA) never ceases to amaze us.

A big thank you to Catherine Clark and Adam Roocke (pictured above) for raising more than $3,000 for our exercise therapy program NeuroMoves, which opens in Adelaide soon.

You too can join Team SCIA. What better way to combat the Christmas overindulgence and keep your New Year’s resolutions on track by signing up for one of the many sports events happening around Australia. Join our team by cycling, swimming, walking or running for people with spinal cord injury. Visit www.scia.org.au to see upcoming events that suit all fitness levels.

Singing for Spinal Cord Injury Singing their way to the top: a big thank you to Heidz and Jae Haydon, The Stone Fruits, Billy Demos, Dominic Connor, The Real Supastar, Felice Mead and all those who took part in the fabulous Sing for Spinal Cord Injury fundraiser. This was the third year of the event and it was the biggest one yet; they absolutely smashed the target of $10,000 and raised 12 accord magazine

a phenomenal $11,140. The artists recorded a different acoustic song every day throughout October and it was an amazing success. We are blown away by the support that these wonderful musicians have shown SCIA. We want to thank them and those who donated.

Your efforts make a big difference to the lives of people with spinal cord injury.

SCIA is on the lookout for more community fundraisers. Whether it’s a community fete, a local barbeque or a bake sale, your support will go a long way.

If you would like to organise an event for SCIA, visit http://bit.ly/SCIA_fundraising

FUNDRAISING

Trusts and Foundations Spinal Cord Injuries Australia (SCIA) gratefully acknowledges the support and generosity of the Julia Farr MS McLeod Benevolent Fund and The Ian Potter Foundation.

and acquiring new skills to lead more independent lives.

We also thank and acknowledge the main supporters of SCIA’s first children’s exercise clinic. DOOLEYS Lidcombe They have awarded grants of $100,000 and Catholic Club donated $105,000 and $75,000 respectively for the establishment Newman’s Own Foundation awarded of SCIA’s NeuroMoves exercise services in a grant of $67,167 to help start the clinic Adelaide, South Australia. The facility offers and cover expenses, such as equipment, individually designed intensive exercise training and staff. therapy for people with spinal cord injury, The clinic offers the first locomotor acquired brain injury and degenerative training and activity-based therapy for neurological conditions. children who have spinal cord injury A further grant of $41,668 from and other neurological conditions in Community Benefit SA, a program of Australia. The clinic helps to improve the South Australian Department for the children’s mobility, function and Communities and Social Inclusion, has overall health. enabled the purchase of a functional Thanks also go to the supporters of our electrical stimulation (FES) cycle and NeuroMoves in Perth. The Marian and the Bure Rise and Go. This specialised E.H. Flack Trust awarded a grant of equipment assists people in improving $36,540 for equipment. and maximising their functional ability

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www.scia.org.au 13

FEATURE

Sailing down the road Six years ago Bill Georgas saw potential in a dilapidated off-road bus that he found lying idle and set about transforming it into what he calls the ‘yacht of the land’.

This impressively large vehicle, weighing 13.5 tonnes and standing 3.8m high, 7.5m long and 2.5m wide, has no problems sailing down the main road.

A mobile home away from home, it handles the flat open road right through to the white sandy dunes at Stockton Beach near Newcastle.

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Lift the lid on all that’s imaginable and discover how you can be empowered to expand your horizons.

The spaceship-like qualities of the steering and dashboard would have no trouble fitting in at NASA’s mission control.

They, like everything else in the bus, are built to suit Bill’s functional capabilities.

Helen Borger, accord Editor

The ingenuity he uses as the Managing Director and owner of PME Auto Conversions—modifying any type of vehicle

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Having paraplegia, Bill has used his engineering expertise to ensure the bus is designed so he can operate it singlehandedly wherever and whenever he is on– or off–road.

so people with disability can get back behind the wheel—has been lovingly poured into his bus over the past few years.

FEATURE

Like most large mobile homes, it’s a bit of a climb into it, so access has been made easier with the installation of a lift. Bill just needs to open the front door of the bus, fold down the platform attached to the door, roll on to the platform and then activate it with the remote control. Once inside, he can transfer into the driver’s position, use the accessible bathroom or have a snooze on the bed at the back.

His mind is firmly set on where his ‘yacht of the land’ will take him, not the time and cost spent fitting it out.

Belying its rugged military-brown exterior, the bus has all the mod cons and touches of outback luxury; hot and cold running water, indoor and outdoor showers, air-conditioning and heating. Any type of meal can be whipped up in the kitchen with the gas oven. But why spend time in the kitchen when you can be outside underneath the bus’s pull-out canopy, enjoying the delights created on the external slide-out barbeque while washing them down with a cold one from the slide-out mini fridge. If the mood takes, you can even break out the built-in washing machine to spruce up your clothes.

The bus also accommodates two guests in the pop-up bedroom that sprouts from its roof.

Bill can also indulge in one of his favourite pursuits—quad bike riding—as the bus easily takes his bike, which is loaded onto a specially designed and remote-controlled rack at the back.

The bus wouldn’t be complete without a spare tyre. The 150kg monster tyre is perched on the roof, but as Bill has thought of everything he has also installed a crane to get it down.

Despite the enormity of the bus, it can still pull into any petrol station and fill up. Bill doesn’t like to speak of fuel consumption in cents per kilometre, preferring to estimate it as “fair, depending on the road conditions”.

He initially picked up the bus for $20,000. But rather than think about how much he has spent fitting it out since then, his mind is firmly set on where his ‘yacht of the land’ will take him.

PME Auto Conversions is the Diamond Sponsor of the Spinal Cord Injuries Australia Independence Expo. To learn more about how any type of vehicle can be modified to suit your needs, visit PME Auto Conversions at the Expo. Register to attend at www.scia.org.au/expo or call 1800 819 775. Entry to the Expo is FREE. ■

Working the wind

Hoisting billowing spinnakers as you wrestle with the wind

The freedom of being carried across the water by the breeze is available to anyone. In 2000, Nava George became the first person with ventilated quadriplegia to sail solo on Sydney Harbour. Setting sail from the dock of the Dobroyd Aquatic Club in a boat adapted to her needs, Nava independently controlled the boat with a chin toggle, while her ventilator was stowed securely in a purpose-built compartment behind her.

No scrambling from side to side or hanging over the edge of the boat to keep it upright in a stiff breeze was necessary.

In the aptly named Liberty sailing boat you can single handedly cut through the waters on Sydney Harbour or elsewhere, regardless of your disability. The boat is designed so you sit in the vessel—like reclining in an armchair. The seating can also be adjusted to your needs. Built like a bathtub with a 72kg centreboard, this 3.6m vessel is virtually unsinkable.

If your intrepid nature prefers to catch the breeze with a sailing partner, you can also try your hand with the two-person Skud (Hansa 303). It’s also designed for armchair-like, unsinkable sailing, at 5.8m and with a 32kg centreboard.

The sails of both boats are usually adjusted with ropes, but can be manoeuvred with a joy stick. Selected boats can also be operated with chin or sip and puff controls.

You can venture onto the water in the Liberty, Skud (303) or other suitable boat with Sailability.

The Dobroyd Aquatic Club in Sydney, from where Nava set sail, is the home of Drummoyne Sailability. Like all Sailability clubs around New South Wales (NSW), it’s keen to get as many people on the water as possible. Many experienced sailors are on hand to provide instruction or to take you cruising around as you relax in the boat. The sailing instructors are all volunteers. Getting in and out of the boats poses no problem.

Like selected Sailability clubs, the Dobroyd Club has a hoist to transfer people into and out of the boats.

Membership at the Dobroyd Club is $30 per year and you can sail as many times as you like, or you can make a donation to the club if you just want to have a trial sail first.

may be the first thing that springs to mind when you think about learning to sail. But there is an easier way to be at the helm with the sun on your face, the wind in your hair and the water To learn more about sailing, visit Sailability NSW at lapping at your sides. www.sailabilitynsw.org or phone 0411 525 060. ■

www.scia.org.au

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FEATURE CONT’D

Building heart and soul I

t’s true what they say about the work of passionate people: when you stand before it or hold it in your hands it emanates a quality not found in the work of those less enthusiastic about their craft.

Joshua Shelley, Building and Maintenance Manager, and the other staff at Fusion Building and Maintenance are passionate and very enthusiastic about their craft.

This not-for-profit organisation constructs homes, home extensions and home modifications—most types of construction, in fact—all over Sydney. It is a social enterprise dedicated to high-quality, best-practice building work that develops the potential of people with disability, the elderly and other members of the community.

At the heart of Fusion Building and Maintenance’s work is the creation of liveable spaces that meet clients’ needs. Joshua says that everyone at Fusion understands that when they are on a building site it’s not about the profit and loss, it’s about the client, their values, their life and what they want.

From the time he started at Fusion until now, he has always believed that the organisation is doing more than building structures.

When they are on a building site, it’s not about the profit and loss, it’s about the client…and what they want.

Joshua says all the building staff have valuable experience under their belts.

Damian Davies, an occupational therapist, is also on hand to consult on home modifications. Employees and any subcontractors used by the organisation must undergo police, trade licence and insurance checks. Most employees have been on board for six to 12 years and the subcontractors are also engaged on the basis that they believe and engage in the ethos of the business.

The high-quality, respectful culture permeates the day-to-day work. Joshua says it’s par for the course if they are in someone’s home doing some construction work and hear a dripping tap that they just fix it—at no extra charge. “We don’t just walk past it,” he says.

The organisation is an accredited building company and a registered National Disability Insurance Scheme (NDIS) provider. All surplus funds support its other services. Fusion isn’t just a building company—it also offers employment, family, youth and community programs.

For more information,visit www.fusionbuilding.com.au or phone (02) 8805 5960. ■

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NEW SpeediCath Compact Set is the only compact and discreet catheter with an integrated and sterile bag. The revolutionary design gives catheter users like Simon a simpler, less time-consuming way to catheterise.

The catheter features a unique coating that makes it ready to use instantly while a remarkably discreet

design means it’s small enough to keep in a pocket or handbag. For Simon, that’s a telling advantage: “The size is perfect – it probably couldn’t get much smaller. It will drop nicely into a pocket or rucksack without taking up much space.

You wouldn’t necessarily know it’s a catheter so any potential embarrassment is removed immediately.”

The compact design offers additional benefits, not least in terms of ease of use. Says Simon: “I can see that this would be a much easier solution, both in terms of use, carrying, before use and disposal after.

“The fact that it’s pre-hydrated is a bonus. It’s ready to use as soon as it comes out of the tube – that’s a big step forward.”

Coloplast A/S, Holtedam 1, 3050 Humlebæk, Denmark www.coloplast.com The Coloplast logo is a registered trademark of Coloplast A/S. © 2015-11 CON414. All rights reserved Coloplast A/S

To learn more about the SpeediCath Compact Set Male or to sign up for free samples call Coloplast on 1800 653 317 or visit coloplast.com.au/tryset *Also available in a Female version

FEATURE CONT’D

Be your own boss T

he National Disability Insurance Scheme (NDIS) is shining the spotlight on genuine choice. Whether or not you qualify for the scheme, it has started a bigger and broader conversation on the importance of people with disability doing things their own way.

One of the benefits of the NDIS is that you can opt to manage your own funding and hire your own support workers. In response, a number of innovative services are getting behind a person’s right to choose and springing up around the country.

Some of these services are online platforms, which match people with disability with support workers. People with disability register online to gain access to a list of verified support workers.

Basically the platforms allow you to more easily seek out, interview and hire and fire your own support workers.

It goes without saying that hiring people is daunting, so the online platforms help you navigate this new territory. Critically, these services must ensure that the support workers featured on their platforms are legitimate and adequately trained.

One organisation operating in this space is HireUp. Sister and brother Laura and Jordan O’Reilly co-founded the organisation.

Jordan is the CEO and graduated from The University of Sydney in 2012 with a degree in occupational therapy. He started out at Laura and Jordan’s other organisation Fighting Chance, a not-forprofit organisation that helps develop the potential of people with disability. He then moved to his start-up business, HireUp. Jordan also remains as a director of Fighting Chance, while Laura is the CEO. Putting people with disability in charge of their own lives is central to HireUp—and part of this involves making the hiring process easier. Before you even lay eyes on a support worker’s online profile, HireUp has carried out referee checks and scrutinised each worker’s identification, resume, police criminal record and working with children and/or vulnerable people status. Support workers must also have, as a minimum, certification in cardiopulmonary resuscitation (CPR) and/or first aid.

One of the benefits of the National Disability Insurance Scheme (NDIS) is that you can opt to manage your own funding and hire your own support workers.

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HireUp also pays and insures the support workers on its platform, so payroll is taken care of; you just pay HireUp. This leaves people with disability free to focus on putting potential support workers through their interview paces to see if they fit in with their lives, not the other way around.

A consultation process is also in place to help improve services. “...We have a team dedicated to engaging the community, which provides us with another really valuable way to understand our users’ needs,” Jordan says. “We’re also building a great advisory board of people both with and without disability...”

Also, all HireUp staff must be registered as users on the platform and book shifts, to either provide or receive support. “We find this really brings to life the work we do when we’re back behind the desk,” he says.

To learn more about HireUp, visit www.hireup.com.au or phone (02) 9113 5933. ■

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

Doing whatever it takes after a spinal cord injury.

Spinal Cord Injuries Australia (SCIA) is about getting people ‘back on track’ following a spinal cord injury.

We provide solutions to obstacles that commonly arise and provide support to ensure people with a spinal cord injury remain actively involved in personal, social and vocational activities.

SCIA services and programs include: Peer & community support

Regional services

Latest news, information & resources

Self development

Exercise services

Respite & holiday accommodation

SCIA Workforce employment services

Financial grants & assistance

Occasional & emergency services

Teamsafe injury prevention program

Policy & advocacy

Social events

scia.org.au | 1800 819 775

FEATURE

Exquisite

Beautiful designs are as important as function when it comes to countering generalisations and stigma around disability.

Helen Borger, accord Editor

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FEATURE

Cobie Moore glides the brush-tipped marker across

the crisp white paper without a hint of friction.

Dissecting beauty and death, and reflecting on life in a wheelchair, her brilliant colour palette and intricate illustrative storytelling are as delicate as they are robust.

This depth and richness permeates her design studies at the University of New South Wales (UNSW), where she will graduate with a Bachelor of Design and Bachelor of Art Education (Honours) in 2016.

Even before she graduates, Cobie’s illustrative talents have seen her take on commission-based illustrations and sell her artwork, including prints and cards, on Etsy (www.cobieannmoore.etsy.com). Her flair for jewellery making is also undeniable. In fact, she specialised in designing jewellery before her accident.

On Christmas Day 2011, just before Cobie was about to start her fourth year at university, she was preparing to have her photograph taken on the balcony of her family home in Coffs Harbour when the railing gave way. She fell on to rocks crushing her C5-C6 vertebrae and was paralysed from the chest down with limited movement in her hands and low strength in her arms.

Cobie was in the Royal North Shore Hospital (RNSH) and then Royal Rehab for one year.

She has fond memories of her RNSH occupational therapist (OT), who discovered her passion for art and helped her reclaim her drawing and painting abilities.

However, her ‘fondness’ for OTs isn’t universal.

Cobie working on one of her illustrations.

The aesthetics [of assistive devices] must also keep up with the fashions and styles of mainstream design. moved away from jewellery making as her specialty. Instead, her honours thesis, which she completed in 2015, focused on aesthetics, design and disability in response to what she saw as a significant need for well-designed and aesthetically pleasing assistive devices.

Regaining some of her function has meant using OT-developed assistive devices. Donning hand splints, to maintain range of movement and for drawing and painting, and palmar bands to hold cutlery and eat independently, seemed like a good idea when she was in hospital and rehabilitation. But when outside the confines of these medical settings, the distinctive medical aesthetic of the assistive devices made her feel self-conscious and unwanted in the non-medical environment.

She says it’s essential to move away from the distinctive medical aesthetic and design for people rather than patients, placing value on the aesthetic sensibilities of the final product.

Although she was pleased to reclaim her drawing and painting abilities, the assistive devices crafted by the OTs were more about function than form—and a far cry from aesthetically pleasing.

She highlights research which notes that just because people may share the same disability it doesn’t mean they have the same needs. She says each user’s desires and social, occupational and other environmental needs must be considered—so assistive devices become individualised. However this can be difficult to achieve, because when it comes to working out the best way to enhance function, the current focus tends to be on adapting the person with disability to the environment rather than adapting the environment to the person, she says.

Cobie says the pink thermoplastic moulded splints that enabled her to grasp coloured pencils were “very inconvenient”, “ugly” and “looked freaky”. They made her stand out—in a negative way—as people would stare and make comments.

She also recounted the awkward glances and pitying looks from friends and other diners, when she used the palmar band with a fork at a restaurant for the first time. It made her vow never to use assistive cutlery in public again.

These experiences had a profound effect on Cobie.

Returning to university with the help of ParaQuad and Northcott scholarships and the InVoc program, she

Cobie makes it clear that this is not just about making pretty objects. She points out that assistive devices are very personal objects, so getting the aesthetics right means understanding each user’s identity and environment.

There also needs to be a greater awareness on the part of health professionals that people with disability don’t need adaptive devices that scream, “look at me I have disability”. She says more time should be spent investigating devices that are produced for everybody to use that may also work well in the context of a person with a disability. www.scia.org.au

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FEATURE Cobie points to the humble felt-tipped pen as an example. In her situation, it turned out that she didn’t need an adaptive device to draw again after all. Already on the mass market was a felt-tipped pen that didn’t require as much force as a pencil. Therefore, she was able to use a device, without adaptation, that was designed for artists without disability.

Interestingly, this discovery didn’t come from a health professional—but a designer. Cobie says designers bring a whole new perspective on materiality and aesthetics and should be part of any team that is supporting a person with disability.

The felt-tipped pen is a metaphor for how universal access principles can be applied to all aspects of daily living, not only gaining access to buildings, etc. Cobie wants devices to be created that can be used by everybody, not one device for someone with disability and another device for someone without disability.

Also, when it comes to designing assistive devices, she wants them designed as close as possible to mainstream devices. The aesthetics must also keep up with the fashions and styles of mainstream design, she adds.

Interestingly, she says that in the midst of creating this new glove design, she noticed that someone else had designed a similar glove—but not for pushing wheelchairs. The other glove was designed for people to hold cold railings in Northern Hemisphere winters.

Focusing on aesthetics and universality, as well as function, enables people with disability to assert their individuality as people, rather than as people who need to wear assistive devices that point to their disability. This helps to stop people with disability from being viewed as homogeneous, therefore avoiding generalisations and subsequent misconceptions about them and their disability, which in turn can help reduce stigma, Cobie says.

Her aim is for designers and artisans to collaborate with people with disabilities and OTs to create beautiful assistive devices minus the dominant medical aesthetic. Collaboration is the key, as the last thing she wants is for people with disability to be passive in this relationship and to feel like they are someone else’s inspiration or problem to be solved.

Her long-term career goal is to have her own design business, In response to what she describes as shockingly designed gloves collaborating on these types of designs. Meanwhile, her for use when pushing wheelchairs, she has created a new design illustrations and other artwork continue to make their mark. prototype. Styled more like a fashion accessory, material moulds Her portfolio of cards and prints, including “Davy Jones Locker”, to the palm side of her hand, a ring attaches to the material and “Crocodile in the Lounge Room”, “Two faced”, “Ghosts of slips on to her thumb, from the ring a chain runs along the back Christmas Past”, “Wild man” and many others, continues to grow. of her hand and connects to a bracelet around her wrist, which Cobie’s artistic talent will be on display at the SCIA Independence attaches to the material on her palm. While a few design kinks Expo in April, where you’ll have the opportunity to pick up a need to be ironed out to improve the glove’s functionality, she 20150827 SCIA 130Hx90W Sept Issue OL.pdf 1 28/08/2015 2:09:15 PM Cobie Moore original card or print. Visit www.scia.org.au/expo or says it’s a much more pleasing device to the eye. She feels more confident using this type of accessory than the conventional glove. call 1800 819 775 to register. Entry to the Expo is FREE. ■

ParaQuad NSW and BrightSky Australia For people of all ages with spinal and other health conditions Supporting you to be independent

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FEATURE RESEARCH

Stimulating a cure Duncan Wallace, CEO, SpinalCure Australia

Not so long ago a career in spinal cord injury (neurotrauma) research was considered a dead end. However, the advances made over the last decade have seen the field become a ‘hot spot’ in the medical research world. It’s official: neurotrauma research is now cool.

Pharmacological treatments are looking

promising. These include drug therapies which, if administered soon after injury, will hopefully reduce the degree of permanent damage. For example, the spinal units in Sydney and Adelaide are amongst 25 centres participating in a stage 2/3 trial of one such drug, Riluzole, for acute cervical injuries.

Riluzole is more commonly used for treating motor neurone disease. It needs to be administered within the first 24 hours after injury with recurring doses for 13 days.

Scaffolds, which are implanted into spinal cord injury wounds, as mentioned in the last edition of accord, report some success.

InVivo Therapeutics has reported modest yet significant improvement of the second and third patients in its clinical trial just one month after they were implanted with the company’s Neuro-Spinal Scaffold. The biodegradable scaffold is surgically implanted into the wound and is designed to assist nerve sprouting. InVivo has also recently announced a new and very interesting strategy for treating chronic (older) injuries using their new ‘Bioengineered Neural Trails’. These are injectable combinations of biomaterials and neural stem cells (NSCs) delivered using minimally invasive surgical techniques to create trails across the chronic injury site.

We’ll be watching progress on this carefully as combination treatments are hoped to be more effective than cell or scaffold treatments alone.

Stem cell research also continues. Several trials are underway for varieties of stem cells including those derived from the central nervous system (CNS), adipose tissue and umbilical cord. The modest early results may seem disappointing in the light of the original hype around the potential of stem cells, but it must be remembered that, so far, results are from safety trials with relatively small

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numbers of cells implanted. Higher doses and more time may be required for better outcomes. This is exemplified by Asterias Biotherapeutics’s trial, where the first three patients were only given a low dosage of two million cells to check for safety. Asterias has started ramping up the dose and will be giving the next five volunteers 10 million cells each. We await the results.

For chronic injuries, StemCells Inc has announced the six-month results for the first six patients with quadriplegia to have been given the company’s stem cell line.

Improvements so far have been minor but it’s early days. For example, in the safety trial for thoracic injuries, one patient can now wiggle a toe one year after implantation, so things are still improving.

In other innovation, neurostimulation offers the most outstanding results of any intervention to date. The treatment of epidural electrical stimulation involves the implantation of an electrode array (normally used to treat back pain) against the spinal cord in the lower back, below the site of injury. The first four volunteers with paraplegia to receive these implants, two of whom had ‘complete’ injuries, can now stand up using their hands only to balance.

They also have improvements in bladder and bowel control and a return of feeling and sexual function. The Christopher and Dana Reeve Foundation, which has helped finance this work, is currently raising funds to treat a further 36 people (www.reevebigidea.org).

The principal scientists behind this work are Professor Reggie Edgerton (University of California Los Angeles/California Institute of Technology) and Professor Susan Harkema (University of Louisville, Kentucky). Prof Edgerton has also been developing a new generation of electrical stimulators, which allow transcutaneous (through the skin)

FEATURE RESEARCH

stimulation, eliminating the cost and dangers of surgery. These stimulators deliver a carefully controlled electrical current to the spinal cord, by way of electrodes strategically placed on the skin of the lower back.

In July 2015, Prof Edgerton published the results, which show that a 45-minute weekly stimulation treatment, coupled with buspirone treatment (a drug normally used to treat anxiety), was sufficient to allow some voluntary leg movement in five volunteers with quadriplegia. But what is really exciting is that by the end of the study the volunteers were able to move their legs with no stimulation at all and their range of movement was, on average, the same as when they were moving while receiving stimulation.

“It’s as if we’ve reawakened some networks so that once the individuals learn how to use those networks, they become less dependent and even independent of the stimulation,” says Edgerton.

Prof Edgerton has already initiated a new study to see whether these same volunteers can be trained with non-invasive spinal stimulation to fully bear their weight—a feat already accomplished by those with implanted stimulators. Though non-invasive stimulation could offer advantages over a surgically implanted device, Edgerton says both need to continue to be developed. “All patients are going to need something slightly different, and maybe non-invasive stimulation is going to be best in some cases and epidural stimulation in others,” he says. “What we need to do is maximise the clinical tool box that we have so that the physician and the patient can select a therapy that is best for them.” SpinalCure sees huge potential in this research and is in regular contact with Prof Edgerton.

Kent Stephenson, the second person to undergo epidural stimulation of the spinal cord, voluntarily raises his leg while stimulated at the Human Locomotion Research Center laboratory. The laboratory is part of the University of Louisville’s Kentucky Spinal Cord Injury Research Center, Frazier Rehab Institute, Louisville Kentucky.

“It’s as if we’ve reawakened some networks so that once the individuals learn how to use those networks, they become less dependent and even independent of the stimulation.”

Sign up for the email newsletter at www.spinalcure.org.au ■ www.scia.org.au

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FEATURE HEALTH

Knowledge is power Wellspect HealthCare

Getting your hands on the right infection-control facts and a no-touch technique can boost your confidence when using intermittent catheters.

In the beginning Elena* was racked with fear the technique the way I do it today, where of picking up an infection if she ventured out in public and needed to intermittently insert a catheter to remove urine from her bladder.

“I was afraid to move around the city or go on vacation,” she recalls. “I obsessed about the hygiene of the places where I had to use a catheter. I feared the bathrooms in bars and restaurants. I feared everything that had to do with my hygiene outside of my home.”

Her fears were well founded. A urinary tract infection (UTI) occurs when the bacteria that normally reside in the urethra and bladder are changed. This may happen when using a catheter; the longer it stays in the body the higher the risk of infection.

If catheters are too short they can leave residual urine in the bladder, increasing the risk of infection.

Therefore, inserting a catheter intermittently to remove urine from the bladder as required is better than using an indwelling catheter, which remains in the bladder continuously. Intermittent catheterisation poses less risk of infection.

Elena says learning how to practise using it was difficult to start with. “Every woman is shaped differently and I had to learn about myself. Gradually, and with patience, [it] has become part of my life,” she says.

“A nurse taught me how to do it. At first I used a mirror. Then there was an intermediate stage where I fastened the mirror to my leg. And, finally, I mastered

I can do it without anybody’s help. I do it three times a day.”

Elena says “everything ended up alright” and it doesn’t interfere with her work.

“Now I work at a large hub bookstore that specialises in supplying books and publications to major institutions.”

As part of her regimen to reduce the risk of infection, , Elena practices intermittent catheterisation frequently to prevent an overfilled bladder and maintains good hygiene. When it comes to hygiene, clean hands and a non-contaminated catheter must be ensured. The latter can be facilitated with the use of an insertion aid that enables a no-touch technique. It means the part of the catheter that goes into the urethra and bladder is not touched before use.

Another important aspect of preventing infection when practising intermittent catheterisation is avoiding trauma to the urethra. Generally, intermittent catheterisation using hydrophilic-coated single-use catheters has been shown to reduce the incidence of UTIs. These types of catheters absorb and bind water to the catheter surface, making it smooth and slippery and therefore reducing friction during insertion and removal.

Complete emptying of the bladder is also vital. To achieve this, catheters have to be the right length—if they are too short they can leave residual urine in the bladder, increasing the risk of infection.

Elena says she has never had any major complications with her lower urinary tract while using intermittent catheters. ■ *First name only provided

Wellspect HealthCare provides bladder management products and services, including hydrophilic-coated single-use catheters that are used intermittently. More on intermittent catheterisation can be found in the STOP UTI app created by the European Association of Urology Nurses (EAUN) and Wellspect HealthCare. Visit http://bit.ly/STOP_UTI for more details.

Wellspect HealthCare are sponsors of the workshop program at the Spinal Cord Injuries Australia (SCIA) Independence Expo. Register to attend at www.scia.org.au/expo or call 1800 819 775. Entry to the Expo is FREE. 26

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Do something amazing this year and join team SCIA. Whether it be the Cole Classic, City2Surf or Run Melbourne - run, swim or cycle your way towards helping us overcome barriers to independence for people with spinal cord injuries.

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

DAILY LIVING

Balance of power Power assist, not a power wheelchair, may stop you from breaking out in a sweat. David Stern, George Ajaka, Cobie Moore and Colin Johanson provide their perspectives on power.

David

Like many manual wheelchair users, I fear the day that I may have to transition to a power chair. It might be a sudden need due to a shoulder or arm injury, or result from the realisation that I’m just not as strong or fit as I used to be.

David Stern was injured in a work accident in 1974, resulting in paraplegia and amputation. He has worked at Spinal Cord Injuries Australia (SCIA) for more than 20 years, providing information to the community of people with disabilities and their networks.

Although I’ve always struggled to push up slopes and long distances, there are many benefits of using a manual chair over a power chair that have stopped me from making the move. These include the ease of loading it into and out of my car; with a power chair I’d have to get an accessible van. I can also get a ride with family and friends, or in a regular taxi rather than wait for an accessible one. Manual chairs are cheaper and there aren’t any fancy electronics and motors that can break down, leave me stranded and be costly to fix.

impractical because I couldn’t push through doors with it attached and it got in the way of sitting at a table or desk. As it extended a long way in front of my chair, it was difficult to navigate small spaces. Also, it was heavier than I could easily manage to get it into and out of my car.

Next, I trialled a SmartDrive, a motorised wheel that fits onto the back of the wheelchair. The model was the MX1+, which had a separate battery and buttons for switching it on and off. I wasn’t convinced it was for me, as setting it up on my chair was fidgety and took a few minutes. The way the battery was designed suited a rigid frame more than my folding chair.

Then I tried and bought the next version of the SmartDrive. The MX2 incorporates the battery and motor in one unit and is controlled by a Bluetooth wristband Although it doesn’t happen a lot, and I rather than wired buttons. It’s quite small don’t like it, I can be carried up stairs in my chair by a couple of strong people. Try and light enough to easily set up and take off my chair. In fact, it adds only seconds doing that with a 100kg chair plus me. to getting into and out of my car.

Pushing my chair can be hard work but Unlike the scooter attachment, having the it’s the only way I get exercise. Maybe it’s SmartDrive hasn’t changed the way I do not a real aerobic workout but it’s better everyday things, it’s just made them easier. than nothing.

Getting a power assist has changed On top of all that, being a manual chair user is part of my identity. Would I still be my life. At 60 years of age I have more mobility independence now than I’ve had me in a power chair? in all my 42 years of using a wheelchair.

I was interested when power-assist devices Hills and grass, which I would never started to appear on the market. Until have contemplated tackling alone, are recently, none was compatible with my now possible. I travel distances without one-arm drive chair, but then I had the breaking into a sweat. I reckon the chance to trial a couple.

SmartDrive has given me another 10 The first was a scooter-like attachment years before I have to make the move to on the front of my chair. It was powerful a full-power wheelchair and the lifestyle and fun to use, but it turned out to be changes it will need.

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Companion comment Sharon Stern says, “It’s great to see my husband, David, get out and about again as he was becoming less active and spending a lot more time at home because of the effort required to use his manual wheelchair. It’s a joy to see him rediscovering his local area and places further afield. The motor is great for me too because now when we go out together I don’t have to push him up hills or over difficult terrain. I’m more relaxed because I’m not always on the lookout for the next spot he’ll need help.”

www.scia.org.au 29

DAILY LIVING CONT'D

George

Have you sat in your car while your kids are at football training? Do you get wrist and shoulder pain from pushing all day?

Has your therapist been pushing for you to consider a power wheelchair?

After working in occupational rehabilitation, George Ajaka decided that seating was his passion. As Sales and Rehabilitation Manager at GTK Rehab, he provides clinical and product support to the sales team, oversees the product range and works with suppliers for better outcomes for the end user.

• What rear wheel axle positioning will you need for your frame? As the pushrim-activated assemblies and SmartDrive power-assist devices need If you answered yes to one or all of these more of an initial push on the wheels to questions, you may need to consider power get them moving, the centre of gravity assist. It’s a motorised device that can be may need to be moved so you maintain attached to your manual wheelchair. Over your balance in the wheelchair. the past few years we’ve seen an increase in the devices available in Australia. For • How will you store, attach and remove many who’ve taken the leap, power assist the power-assist device? The weight has become part of their everyday routine, of devices varies, along with the offering independence through discreet maintenance and charging procedures. motorised assistance.

• Will

you be using the device on multiple Power-assist devices include powered wheelchairs, and what additional attachments (SmartDrive), joystickbrackets/attachments do you need? Some operated power drives (ZX-1 and Alber power-assist options are easier to transfer E-Fix), pushrim-activated wheel assemblies between chairs than others.

(Alber E-Motion, Alber Twion and Quickie Most power-assist devices are compatible Xtender) and trike options (Firefly and with all leading wheelchairs; however, Batec Electric). it’s best to discuss your needs with They allow the wheelchair user to propel your wheelchair supplier to make an with less energy expenditure. The repeated informed decision. strain on the upper extremities can lead to chronic pain, soft tissue injury and muscle New users of these devices need to be cautious and get to know how the added tears. If strength and fatigue are an issue, the ability to extend functional mobility is power changes the way they operate their wheelchair. When circumstances allow, all-empowering. many manual wheelchair users stretch Additional benefits include: preventing the limits of their chair and their balance, or delaying the transition to a power especially when gravity is working in their wheelchair; compatibility with most favour. They need to be mindful of bumps wheelchair frames, allowing you to keep in their path because these will come your purpose-built frame and specialised faster than usual. With more power—and seating; maintaining your existing chair power that doesn’t always stop when you weight and dimensions with attachments hold the wheels to brake—there’s a risk you because they can be removed when not may fall, tip over or run into objects needed; easier traversing over grass and or other people. inclines; and increased sitting tolerance. (continued on page 43) However, there are questions to consider before using power assist on a manual wheelchair frame: • Does the frame require reinforcement?

Power assist places more force and velocity on the frame and, in particular, the castor housing.

• Which style of wheelchair best matches the power-assist option that meets your needs?

• Does the power-assist option that best meets your needs also suit the style of

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your existing chair? Or do you need a new chair?

Hydrophilic catheters - A good start, a good life Unique no touch insertion grip for convenience & hygiene.

The original all-purpose catheter - available in sizes for men, women & children

Comes with a handy bag for use anytime, anywhere!

Small and descrete!

Visit our website for useful videos and tools!

Come visit us at the SCIA Expo to meet our continence nurse.

www.lofric.com.au | www.wellspect.com.au Contact our nurse on 1800 622 492 or nurse-au@wellspect.com www.scia.org.au 31

TRAVEL

Photo: Taj Mahal, Agra ŠYoko Whyte, missappleheart.tumblr.com

Beautiful one day, not so perfect the next How travelling around the world using a power wheelchair went from the sublime to the ridiculous.

Martin Heng, Accessible Travel Manager, Lonely Planet

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TRAVEL

Last year I was invited to speak at an accessible

tourism summit in Montreal. I decided to take the long way there and back, taking two months and travelling through many countries. I was going to be no more or less independent on this trip than I was at home, which meant travelling with my power wheelchair and carer for the entire journey.

Photo: Martin Heng braving the bazaars of Delhi ©Yoko Whyte, missappleheart.tumblr.com

My experience in Singapore was sublime.

Public transport is really accessible and there’s a government website with a list of ‘friendly’ buildings. Locals with restricted mobility have cards that can be tapped at a pedestrian crossing to double the length of time it gives them to cross the road.

In India, however, I soon gave up trying to use my wheelchair on the pavement, and simply used the road instead. Indian drivers are so used to missing rickshaws, cows, goats, dogs and pedestrians, they were hardly likely to hit a foreigner in a power wheelchair. There is plenty of accessible accommodation available in India for a range of budgets. There’s also an ample supply of people who are willing to lift you or your wheelchair up stairs or in and out of vehicles—if needed—for a small fee.

My experience was more frustrating in developed countries compared with India. In my hotel in Montreal, Canada, for example, the shower bench had been installed on the opposite wall to the showerhead, making independent showering impossible. Luckily I had my carer with me.

Also, on arriving in Montreal, while my wheelchair was delivered to the door of the aircraft as promised, it was missing the left footplate. On closer inspection it had been stuffed into the wheelchair’s cushion but the nuts and bolts were missing. Sent on our way by apologetic airline staff, we were given the number of their wheelchair repair agent. Scoring full marks, however, the maintenance person at the hotel where we were staying came up with a temporary solution within half an hour—until the wheelchair repair agent could attend the next morning.

Accommodation in England also proved problematic. I booked a so-called accessible room through a website, but unbeknown to me the room had a bath with grab rails. I only found out because I decided to call the hotel to see if it met my minimum requirements. I was told the accessible bathrooms were all furnished with a bath rather than a shower and, when I queried how a wheelchair user was supposed to get into a bath, it was suggested to me, “Standards may be different in England than in Australia”. Needless to say, I quickly cancelled my reservation.

It’s often difficult to find reliable information about accessible travel. Lonely Planet’s Accessible Travel Online Resources (a free PDF with hundreds of hyperlinked websites) don’t pretend to fill that information gap. However, they are a good start. So here are some tips for a successful trip.

Indian drivers are so used to missing rickshaws, cows, goats, dogs and pedestrians, they were hardly likely to hit a foreigner in a power wheelchair.

If flying, don’t rely on things going smoothly without providing travel agents and airlines with advance warning about your needs. Also, find out all you can about the journey and the destination so you know what to expect before you leave.

No matter what any of the accommodation websites say about the rooms they have on offer—even if you’ve booked a wheelchairaccessible room via Booking.com or Hotels.com— phone ahead, ask for details of the room and get them to send you photographs.

It’s also important to find out whether the environment is accessible for you: Is the swimming pool accessible? Are the major tourist attractions accessible? Is the beach accessible? Is public transport accessible? Are there wheelchair-accessible taxis?

Make sure to service your wheelchair and other equipment before you go and find out if there is a local service agent or supplier that can repair or replace it if necessary.

Take twice the amount of medication you need and pack it in separate bags in case one goes missing. Take a note from your doctor explaining why you need it, along with a list of generic (not brand name) medications and spare prescriptions.

When you take out travel insurance make sure the broker is aware of your condition and that you will be covered for any issues that might arise as a result of it.

You can read more about my trip in my blog: http://bit.ly/world_trip, and to download Lonely Planet’s free Accessible Travel Online Resources, visit: http://shop.lonelyplanet.com

Discover more about travel for people with disabilities at the Spinal Cord Injuries Australia (SCIA) Independence Expo. Register to attend at scia.org.au/expo or call 1800 819 775.

Entry is FREE. www.scia.org.au 33

POLICY & ADVOCACY

Squeaky Wheel

Contributors:

Taxi subsidy boosted The New South Wales (NSW) Taxi Transport Subsidy Scheme (TTSS) cap will increase from $30 to $60 once the NSW Parliament passes legislation in February.

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.

The increased cap comes after a NSW Government review of point-to-point transport services and advocating from Spinal Cord Injuries Australia (SCIA) and other organisations and individuals.

The review recommended that a similar subsidy apply to other point-to-point services. However, for the time being, it will only apply to taxis, not the recently legalised ride-sharing services in NSW. The NSW Government is investigating ways to apply incentives like the TTSS to other services in the future.

Taskforce, which examined the future sustainability of taxis, hire cars and emerging point-to-point transport in NSW, including ride-sharing. The taskforce was established by the NSW Government and recommended an overhaul of services, including the legalisation of ride-sharing services.

The Spinal Cord Injuries Australia (SCIA) Policy and Advocacy team raised a number of issues concerning ride-sharing services in its submission to the taskforce. As NSW taxi drivers said uberX negatively affected their income, it was possible that taxi drivers, particularly those of wheelchair-accessible taxis, would gradually abandon taxis, reducing the availability of wheelchairaccessible taxis.

However, as part of the overhaul of the industry, the NSW Government has For more details, visit increased the Wheelchair Accessible Taxis http://bit.ly/changes_NSW (WAT) driver incentive payment from $7.70 (ex GST) to $15 (ex GST). Sydney WAT licence fees have been abolished, Uber ride-sharing has captured worldwide bringing them in line with the rest of attention because of its disruptive impact on NSW. The WAT interest-free loan scheme existing transport services. Highly regulated has been expanded up to $5 million a year taxi services have been particularly hard hit. to assist with purchasing and modifying accessible vehicles.

In Australia, Uber started as uberTAXI, In line with the Disability Discrimination signing up taxi drivers to use their own taxis to accept bookings through the Uber Act 1992 (DDA), SCIA says ride-sharing mobile phone app. Uber then introduced services must also be affordable and use standards-compliant wheelchair-accessible hire cars known as UberBLACK. Now vehicles and include appropriate disability it’s rolling out the uberX service, which awareness training for the drivers. enables anybody who drives a private vehicle to accept bookings through the In May 2015, Uber Australia launched Uber mobile phone app. uberASSIST, whereby trained drivers Raising or lowering the bar? help customers who have additional needs. Some of the services include Until recently, uberX was unregulated folding wheelchairs and walkers and in New South Wales (NSW). It was collapsing scooters. The service doesn’t without the same licensing and regulation yet cater for passengers requiring lifts or requirements as the taxi industry, accessibility ramps. resulting in cheaper operating costs and potentially cheaper fares.

Can’t stop progress

Uber now legal

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.

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In December, uberX and other ridesharing services were legalised in NSW. Under the new regulations, taxis have exclusive access to rank and hail jobs, while ride-sharing services can only be booked via apps. More detailed regulations, including oversight of the industry, will be introduced when the NSW Parliament resumes in February.

Separate to the need for compliant and accessible ride-sharing services, the rollout of these services may provide some positive outcomes for people with disability, including self-employment as drivers. Privately owned wheelchairaccessible vehicles could be used to offer accessible transport under the ridesharing model.

The changes are in response to the independent Point to Point Transport

Further, at the recent National Disability Insurance Scheme (NDIS) New World

Squeaky Wheel Conference: Disability in the 21st Century, held in Brisbane, two Uber wheelchairaccessible vehicles (UberWAV) offered transport to people with disability for a three-day trial. However, the Taxi Transport Subsidy Scheme (TTSS) can't be used with Uber. Fares would need to be 50 per cent of a taxi fare to make ride-sharing an affordable option for TTSS users.

As the rollout of mobile phone apps has provided opportunities in other areas, such as Airbnb, it's likely that more governments will approve ride-sharing services with specific regulations.

Visit http://bit.ly/SCIA_submission for SCIA's submissions to the taskforce.

NDIS blooms The National Disability Insurance Scheme (NDIS) is headed for a marked increase in participants.

450,000

NDIS participants nationally by 2019

will grow significantly from 30,000 to about 450,000 participants across the country.

For people with disability this will mean two things. First, for those already receiving disability support packages through current arrangements with state and territory jurisdictions and Commonwealth programs (representing 57 per cent of current NDIS participants), the administration and management of the funding will shift to the NDIA, the agency responsible for running the NDIS. Second, Full implementation of the NDIS is there will be a considerable number of already underway in the Australian people who don’t currently receive any Capital Territory (ACT). formal supports and, for the first time, will become eligible for assistance through Meanwhile, the Tasmanian and the scheme (43 per cent of current South Australian governments signed agreements with the Federal Government NDIS participants). This will represent a in December 2015 for full implementation profound change for this group of people. of the NDIS. From 1 July 2016, the Let’s have a look at how things currently NDIS will begin to roll out by age group sit within the NDIS. According to the over three years in Tasmania, and by above-mentioned quarterly report, as of 30 July 2019 it is expected to cover 10,500 September 2015: participants. From 1 February 2016, the • 22,960 participants were eligible for NDIS will begin to be rolled out in full the scheme. This is an increase of 3,143 in South Australia, and by July 2018 it participants since 30 June 2015. will cover 26,000 people. From July 2018 • 19,758 participants had an approved an additional 6500 people, who are not plan. This is an increase of 2,455 currently receiving disability services in participants since 30 June 2015.

South Australia, are expected to be given • The average annualised package cost NDIS supports. across all trial sites was approximately With the expansion of the NSW and $39,087—this figure includes Victorian schemes outside their trial areas, participants from large residential alone, after July 2016, we will begin to see centres. About 10 per cent of participants a marked increase in NDIS participation have support packages above $100,000. numbers. In the three years from July 2016 Visit www.ndis.gov.au for more details. to July 2019 it is estimated the numbers The October 2015 quarterly report from the National Disability Insurance Agency (NDIA) shows more than 20,000 people are now participating in the scheme. By the end of the trial period (July 2016), nationally there will be about 30,000 participants signed up. This is before the full scheme begins in stages across New South Wales (NSW) and Victoria.

POLICY & ADVOCACY

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FOR YOUR NEAREST MATRX STOCKIST VISIT INVACARE.COM.AU OR PHONE 1800 460 460

Squeaky Wheel In other NDIS news, the NDIS Quality and Safeguarding Framework has also progressed.

Among the stakeholder consultation findings, the majority supported staff screening involving the Working with Vulnerable Persons clearance for staff delivering supports considered to pose a higher risk. They also wanted this process to draw on live information and more than just information about criminal convictions. Having a barred persons list was also supported.

Commonwealth, state and territory governments will now use this and the other stakeholder findings to prepare a Decision Regulation Impact Statement for consideration by Ministers in early 2016. Visit http://bit.ly/qual_safeguards for more details.

POLICY & ADVOCACY

Problems gaining access to goods and services?

Spinal Cord Injuries Australia’s (SCIA) individual advocacy service helps people to resolve issues that affect them personally but may also involve other people, such as partners, family members, carers and service providers. These issues may include Housing NSW applications, Housing NSW maintenance, private and social accommodation, dealing with the Health Care Complaints Commission, access to premises, access to services, accessible parking, support with attending solicitors or the Guardianship Tribunal, aged care and a host of other issues that may affect you. For more details, freecall 1800 819 775 and ask to speak with Michael Magro. ■

Caroline Cox advocated for this ramp at her daughter's school with the help of SCIA’s Policy and Advocacy team. This is just one example of the many advocacy cases SCIA has worked on.

www.scia.org.au 37

REGIONAL ROUND UP

Our regional people Spinal Cord Injuries Australia’s (SCIA) New South Wales regional team advocates for the rights and entitlements of people with disability living in regional areas. They are committed to creating independence, dignity and unlimited opportunity for people living with spinal cord injury. Our team looks forward to hearing from you.

Lee Clark Northern Rivers Shop 27, Alstonville Plaza, Main Street, Alstonville, NSW, 2477 T: (02) 6628 3409 M: 0421 055 992 e: northernrivers@scia.org.au Craig Lees Central West / Mudgee PO Box 1140 Mudgee, NSW, 2850 T: (02) 6372 1892 M: 0413 367 523 e: centralwest@scia.org.au Glenda Hodges New England 20 Murray Street Tamworth, NSW, 2340 T: (02) 6766 6422 M: 0427 257 471 e: newengland@scia.org.au

SCIA and Qantas honoured at access awards Glenda Hodges, New England

New England SCIA has been highly commended and Qantas has taken out the top award at the Tamworth Access Award for 2015.

The Tamworth Regional Council bestowed the honours during Tamworth’s Week of Disability from 30 November to 4 December 2015.

This year the finalists were presented with their awards by the Tamworth Deputy Lord Mayor, Russell Webb, at a morning tea held in the Tamworth Community Centre.

The award came as a great surprise and is proudly on show in the New England office’s reception area.

New England SCIA was highly commended for its office accessibility and the support it provides all people with a physical disability in the region. The award came as a great surprise and is proudly on show in the New England office’s reception area.

The office continues to promote services to all people with all levels of physical disability, particularly when there are no other service providers available to assist.

Qantas won top honours for its accessible entrance and exit ramps, after being nominated by Megan FitzGerald from SCIA’s New England office. Megan travelled with Qantas to the SCIA Staff Day held last year in Sydney. She says the access and service was outstanding especially from the regional staff.

Les Morriss, Glenda Hodges and Megan FitzGerald with the awards

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REGIONAL ROUND UP

Ray nets a big one

Fishing comp reels in winners

Lee Clark, Northern Rivers

Seasoned and first-time fishers headed to the water to catch the ‘big one’ at the inaugural Spinal Cord Injuries Australia (SCIA) Nambucca Valley Fishing Competition held in November.

All participants took home a fishing rod, ‘catch-and-release’ fishing kit and ‘hook-up’ pack.

A big thank you to local businesses who supported the event.

Café 180 Coffee Van supplied refreshments. Nambucca Heads Offshore Fishing Club Inc. laid on a barbeque. NSW Department of Primary Industries, Fisheries and Aquaculture provided all the gear given to participants and also had its information trailer on site.

Competition winners:

Ray Munro

Ray Munro set sail for first the time in 20 years at the inaugural Spinal Cord Injuries Australia (SCIA) Nambucca Valley Fishing Competition held in November.

Ray and other fishers eagerly took to the shoreline and boats to cast a line. Everyone had a great time with many taking home prizes and trophies with the support of local businesses and services.

Longest flathead: Jason Hay Junior girl longest bream: Jade Cahill Open female most caught: Marlene (surname not disclosed) Open male most caught: Bob Abdoo Open female longest bream: Marlene Open male longest bream: Allen Willman Junior male most caught: Nick Tanner Raffle: $25 fuel voucher donated by Liberty service station Urunga.

Winner: Andrew Stibbard

Ray, who hails from Coffs Harbour and has paraplegia, had not been in a boat for over 20 years. Thanks to the assistance of volunteers from the Nambucca Heads Offshore Fishing Club Inc. he was able to take to the water.

Having been helped on board Mark Tanner’s boat, he was able to share the adventure with Mark, who also has paraplegia, relaxing and fishing on the Nambucca River. Mark’s love of fishing and skiing prompted him to modify his boat so he can board it more easily.

“Congratulations to Mark Tanner, Lee Clark, and SCIA for organising the fishing comp. Right from arrival on the day you could see that a lot of time and effort had gone into the competition,” Ray says.

“The entry was a breeze and the handout of rod and reel and the catch-and-release pack was great—and we were even given some bait.

“Volunteers from New South Wales Fisheries were also in attendance, talking to all the competitors about circle hooks, and catch and release.

“All in all I had a great day on Mark’s boat (thanks mate) with his son, Nick, and Jason from Ability Links making up the rest of the crew.

“Thank you also to the guys from the fishing club who assisted with getting me into the boat. It was such a great day and I look forward to attending again next year.”

Allen Willman

Northern Rivers opens new office SCIA’s Northern Rivers’ office has moved to new and improved premises.

SCIA’s dedicated Northern Rivers Co-ordinator Lee Clark is now located in Alstonville, half way between Lismore and Ballina.

SCIA made the move in December and is excited to be in new premises as it is closer to the heart of the action. Don’t hesitate to drop in and see Lee at the new premises.

The move has meant changing some of the contact details. The new office number is (02) 6628 3409 and the new fax number is (02) 6628 5932. But the mobile number remains the same: 0421 055 992. Or visit Shop 27, Alstonville Plaza, Main Street, Alstonville, 2477. www.scia.org.au 39

SCIA is recruiting!

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

• Flexible hours in a variety of metropolitan and regional areas • Training and uniform provided • Great commission (33% of money collected) • Previous experience preferred but not essential

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

scia.org.au | 1800 819 775

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REGIONAL ROUND UP CONT'D

Michael raises $80k for new car Craig Lees, Central West

Fundraising savvy and community generosity have helped raise more than $80,000 to buy Michael Beh more than a new car.

Michael has high-level quadriplegia, so the vehicle makes a huge difference to his outlook. “Now everything seems possible,” he says.

Wellington, western New South Wales, can be a tough place to get around if you are like Michael and rely on an electric wheelchair. City folk generally use accessible trains, buses and taxis. But many towns out west don’t have a taxi service— accessible or otherwise. If the local community transport service is lucky enough to have a wheelchair-accessible vehicle, good luck trying to book it when you actually need it.

The only real solution for some is to have their own vehicle.

Vehicles modified for an electric chair are not cheap. A reasonable used vehicle can cost $30,000, while new vehicle prices range from $60,000 to well over $100,000, depending on the base vehicle and relevant modifications. Saving this sort of money is a pipe dream if your only income is the Disability Support Pension.

Michael first set a target of raising $30,000. He hoped it would afford him a reasonable second-hand vehicle. He recounts his first fundraising effort as a ‘monster’ garage sale. Locals from Wellington and surrounding districts donated the goods to be sold. People from as far west as Narromine also contributed to help raise the first $4,000.

Michael Beh and his new car

Several raffles were organised, with local and Dubbo businesses donating goods. Many locals, along with Michael’s mum, Marlene, donated their time to help sell the raffle tickets outside the local shopping centres. Michael also operated a monthly market stall, which raised further funds to add to the pot.

The fundraising finale was a high tea garden party organised

by Michael’s sister, Lorraine, with the support of friends. Once again, locals and businesses from both Wellington and Dubbo contributed items to be auctioned on the day. Entertaining activities were also organised, including electric wheelchair time trials. The event raised another $22,000.

Combined with his own and family savings, Michael raised over $80,000, allowing him to buy a new, modified Toyota Tarago in Sydney. ■

“

iLevel has restored my mobility and freedom. Switching to iLevel was like going from an economy car to the deluxe model!

When I am out in public, everyone asks me how I can drive so fast elevated. iLevel has taken away some of my disabilities and brought normalcy back in to my life. I cannot imagine life without it.

”

Call 1800 800 990 Pride Mobility Products Austalia Pty Ltd 20-24 Apollo Drive, Hallam Victoria 3803

INFORMATION AND RESOURCES Discovering: Accessible US Travel Guide for Wheelchair Users by Lisa Wells A directory of accessible travel destinations in the US from the Get Out, Enjoy Life (GOEL) program. Request a free copy of the book at http://bit.ly/1CIkqib or purchase the book from http://amzn.to/1QH1L1u

Penguin Bloom by Cameron Bloom and Bradley Trevor Greive This is a true story about Sam Bloom, who was paralysed and deeply depressed after a fall, and how the rescue of Penguin the magpie chick brought Sam joy and strength. The book is available in April 2016 and can be pre-ordered from http://ab.co/1iaybBP (or borrow from the SCIA Library).

Fallen: A Trauma, a Marriage, and the Transformative Power of Music by Kara Stanley Kara Stanley tells the story of her husband’s brain and spinal cord injury, including the role of music in his life. Visit http://amzn.to/1m6xUD4 (or borrow from the SCIA Library)

Me, Myself and My Brain Stem Tumour: Memoirs of a Pediatric Brain Cancer Survivor

by Bayan Azizi Bayan Azizi shares his story of living with a brain tumour. It’s a compelling and humorous autobiography. Visit http://amzn.to/1NLb2zm (or borrow from the SCIA Library)

Husbands Should Not Break: A Memoir About the Pursuit of Happiness After Spinal Cord Injury by Shane Clifton This honest memoir describes the challenges of adjusting to life with quadriplegia, including the impact on sexuality. Visit http://amzn.to/1O8ThxQ (or borrow from the SCIA Library)

As Long As It’s Healthy by Dawn Patterson Dawn Patterson gives an uncomfortably honest account of living with her son, James, who has spastic quadriplegia cerebral palsy. Visit http://amzn.to/1ZoNRlZ (or borrow from the SCIA Library)

Supporting Disabled People with Their Sexual Lives: A Clear Guide for Health and Social Care Professionals (1st edition) by Tuppy Owens This guide shows professionals how they can support disabled people to fulfil their sexual lives and provides a section on the law. Visit http://amzn.to/1QWPRPn (or borrow from the SCIA Library)

Sex and Disability short films by Mik Scarlet British actor, journalist and TV presenter Mik Scarlet has a spinal cord injury. He is unable to walk or get an erection. Mik has produced two short films about the myths surrounding sex and disability. Visit http://bit.ly/1O8TMYx and http://bit.ly/1Jud2dz

Disability Horizons magazine This is the UK’s fastest-growing disability lifestyle publication. It has a web audience of 35,000 people. All content is sourced from its readers and covers employment, entertainment, news, politics, relationships, sex, sports, technology and travel. Visit http://disabilityhorizons.com

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

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Continued from page 30

DAILY LIVING CONT’D

C

obie Moore sustained C5-C6 quadriplegia four years ago. Three years ago she swapped her power wheelchair for a manual wheelchair with a power-assist pushrim-activated wheel assembly.

Why use power assist?

I prefer the appearance of a manual wheelchair to a power wheelchair because I stand out less in social situations. The functionality of a manual wheelchair is also preferable because it fits under tables and in other places that my power wheelchair can’t go. I can also dismantle the manual wheelchair along with the power assist and travel in a friend’s car.

What do you love about it?

It makes me feel stronger and more independent. I can push myself up hills or ramps; although they remain a challenge, they aren’t impossible. I feel a great sense of accomplishment when I reach the top of a big hill.

What do you find frustrating?

It sometimes has mechanical faults and the manufacturer is unable to determine the cause. This can be dangerous at times because it randomly turns off while I’m wheeling along the street, but mostly it’s just frustrating.

Even so, I wouldn't be without it.

What do you wish you could change?

I wish there was an aesthetically pleasing version of it, or at least customisable hub caps. Also, I dislike the lights that indicate your battery charge level, as they attract unwanted attention, especially in low-light environments. ■

C

olin Johanson has never thought to use a power wheelchair full-time in the 39 years that he’s had C5-C6 quadriplegia. He uses power assist to convert his manual wheelchair to power as required.

Why use power assist?

Although I need the exercise of using a manual wheelchair, power assist

is hugely beneficial for independent mobility. My wife and I can take the dog for walks without her having to push me.

I can quickly pop into and get around town to buy groceries, visit the doctor or go to the sailing club, without having to transfer into and out of my car.

What do you love about it?

It goes over grass and rough ground, up and down hills and kerb cuts.

It’s inconspicuous, unlike the power wheelchairs I’ve tried. I like people to see me first, and the chair second, and to have a funky, stylish chair.

What do you find frustrating?

The type of power assist I have is too heavy for my wife and I to lift into the car boot, so we can’t take it with us on car trips. Also, it only fits the rigid manual wheelchair I use at home, not the folding chair I carry on the car roof.

What do you wish you could change?

Greater travel distance capacity (it is limited by battery size). I also wish the distributors had the programming of the controller better set up—mine is fine now after a full reprogramming. ■ www.scia.org.au 43

TECHNOLOGY Graeme Smith, Ability Technology

Joystick for my tablet

Door opener

I use a joystick with my left arm to control my wheelchair. I would like to get a tablet computer and to use a joystick mouse to control it. This would enable me to email, read the news and make Skype calls. What are my options?

I want a way to open my door to let carers in when I’m in bed. I don’t want them to have a key, as they change all the time and I feel vulnerable. I usually leave the door unlocked when I know they are coming, but that’s not safe either. I need a remote-control door opener.

If you want to use a joystick to move a cursor around, you need an Android tablet.

This is because when you connect a mouse device to an Android tablet’s USB port, a cursor appears on the screen. This gives you similar controls as on a computer, to move around the screen, open and close apps and so on. You can also use this method to type text through an on-screen keyboard. Some of the joysticks available are the Rock, Optima, Bjoy and Bjoy Lite. You can also connect via Bluetooth with the Point-It! Joystick. These are not cheap, however, and may cost more than your tablet device.

On the iPad there is no USB port and no cursor. A Bluetooth joystick such as the J-Pad uses the iPad’s switch scanning system. It’s not as direct as the system on the Android, but it can be quite effective with practice.

It sounds like you need a remote door unlatcher, as distinct from a fullpowered door opener (which can be quite expensive). There are various possibilities built around an electric door strike release. The cheapest system would be a wall-mounted keypad outside—at least you could change the access code from time to time. If you want to control access remotely yourself, one option would be to use a device that enables a power socket (where the door power is connected) to be controlled via wi-fi. There are many of these available and they are not expensive. You would control the door from a smartphone or computer, via wi-fi. You may want to consider an intercom at the front door as well.

Recording notes I want to write my life story but I get ideas at times when I can’t write them down.

I type with one finger very slowly. A voice recorder is one option, but I would like a system that converts the text and enables me to access my notes back home on the computer. I have an iPhone with me most of the time when I’m out.

One option to consider is Evernote. If you have Evernote on your computer at home (it is available for Mac and Windows) and on your iPhone, the notes will sync between the devices. When you’re out you can use voice recording on the iPhone—this is a small microphone embedded in the pop-up keyboard—to enter text into Evernote. When you return home it will be there for you on your computer. See http://bit.ly/tech_speech for information about setting up speech on most devices. Evernote also allows you to record voice notes, which might be handy at times, too.

NDIS and assistive technology The National Disability Insurance Agency (NDIA) released the Assistive Technology Strategy (26 October 2015) just before the NDIS New World Conference in Brisbane. It outlines an impressive plan to stimulate technological innovation, to equip participants with information and resources to make decisions about technology themselves, and to confirm the financial viability of the scheme through a centralised purchasing system for some assistive technology (AT) items. Expenditure on AT in the scheme is expected to exceed $1 billion by 2019/2020, and AT is included in 39 per cent of participants’ plans in the trial sites.

You can get a copy of the Assistive Technology Strategy at http://bit.ly/assist_tech_strat

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TECHNOLOGY

Apple TV – hands free?

I’ve heard the latest Apple TV can be controlled by voice. Does this mean I can have hands-free control over my television?

Not really. The latest Apple TV is opening up new possibilities for environmental control, but it’s early days yet. It doesn’t have a TV tuner, so controlling the Apple TV does not give you control over your free-to-air television (apart from basic volume control and, in some cases, on/off). Hopefully that will change in the future. The Apple TV has its own operating system (tvOS) and hard drive, so you can download apps written for tvOS. It’s possible that free-to-air channels may develop their own apps for the Apple TV. We’re hoping that environmental control options will develop on this platform in the future.

There is a new remote for the Apple TV and it has Siri built in for control of some Apple TV functions. But you need to press and hold a button on the remote to enable voice control through Siri—not really hands-free.

New product: mobile alert guardian system This is an emergency-call pendant with some interesting features. It takes a SIM card and functions as a mobile phone for receiving calls from anyone. There is no need for a landline and no vulnerability to a power outage. It automatically answers calls in speakerphone mode.

Pressing the SOS button sends an alert to three preselected phone numbers.

Pressing a small button on the side dials one preset number. It has a fall detector that sends a text message to your three emergency contacts when activated.

The built-in GPS sends your location on Google Maps to those contacts with a smart phone. The device costs $297 (contact blenpower@hotmail.com).

If you have a question about technology please contact: Graeme Smith at Ability Technology: info@ability.org.au

A Carers NSW advertorial

Taking care of your health and wellbeing while caring for others Providing support and care to a loved one is often rewarding, however the demands of caring can be physically and emotionally overwhelming, leaving carers vulnerable to stress-related illness. A carer’s primary focus is often on the person they care for—their own health and wellbeing rarely receives the consideration it requires.

Findings from the Carers NSW 2012 Carer Survey confirm that carers need the following to sustain them in their caring role: regular breaks from caring, support from family, friends and services, and practical advice and counselling.

It is important for carers to take time for themselves and address their own health and wellbeing needs. Strategies that can help include: • L istening to your body to identify and address the early signs of stress by taking some time out for yourself to practice relaxation, taking a stroll or getting some exercise • Delegating tasks and dividing caring responsibilities when possible • Talking to someone • Accepting that you are doing the best you can Carers NSW provides support and advice to people providing unpaid care and support to a family member or friend with a disability, mental illness, drug and/or alcohol dependency, chronic condition or terminal illness, or who is frail.

For information, support and referral to programs including the National Carer Counselling Program (NCCP), contact the Carers NSW Carer Line on 1800 242 636 (Freecall from landlines). More information about Carers NSW services and programs can be found at www.carersnsw.org.au. Visit Carers NSW at the Spinal Cord Injuries Australia (SCIA) Independence Expo. Register to attend at scia.org.au/expo or call 1800 819 775. Entry is FREE. www.scia.org.au 45

REVIEW

Rolling on the green A torrent of untapped talent and fun was unleashed when SCIA’s social club took to the lawn bowls green.

W

You can catch Dan Holt (pictured above) and his trusty sidekick, Charlie (assistance dog), on all of the spinal wards in Sydney each week. He is also a member of the NSW GIO Gladiators wheelchair rugby team, with a strong passion for all sports, live music and travelling around the world.

After falling down a flight of stairs in 2008 in a ski resort in Canada, he sustained C5-C6 spinal cord injury.

e had a fantastic turnout at the Putney Tennyson Bowling & Community Club late last year, with not only clients from Royal Rehab but also community members getting involved.

well-priced food and drinks and a spectacular view over Parramatta River.

What better way to finish the afternoon than relaxing with a great bunch of friends?

We arranged for Allan Starrett, who is the Wheelchair Sports NSW Multi Disability Lawn Bowls Coach and Selector, to come along and help us. He not only provided the adaptive equipment to play but also shared his wealth of knowledge about bowls and a run-down of how the game is played. With that we were underway.

A huge thank you must go out to Wayne and the rest of the staff at the club for making every effort to make the day a huge success, providing 10-out-of-10 service all round.

Also, big thanks to Allan for making the trip down from Newcastle, providing not only the equipment to play but also his expertise in the game.

From the start the competitive side of a few began to appear and I think many may Thank you to everyone who attended. We have found a new calling, with a couple of hope you all enjoyed yourself and look the games going down to the wire between forward to the next event.

Velko Barisic and Rob Wynn.

If you, or anyone you know, would like There are some clients, like me, with less to try your hand at lawn bowls, please hand function than the others, making it contact the team at Wheelchair Sports hard for us to bowl. However, that didn’t NSW on (02) 9809 5260. mean we were left out of the afternoon of fun. There were numerous opportunities Each month at Spinal Cord Injuries Australto participate, including the throwing ia (SCIA) we get together with our clients and members to do something fun, social of the jack and making those tough judgement calls on whose ball was closer and active. Anyone with a spinal cord injury or similar disability, plus friends and to the jack for the win. family, is invited to join us. For upcoming The day wasn’t all about bowls, though— events, turn to page 50 and then RSVP to not by a long shot. Inside, the Putney Rob Wynn: rwynn@scia.org.au or Heidz Tennyson Bowling & Community Club Haydon: hhaydon@scia.org.au or phone 1800 819 775. boasts an awesome menu of extremely

Clients from Royal Rehab and community members enjoying a day on the bowling green.

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MEMBER PROFILE

Lasting support SCIA has been around for a long time because it was founded by people with disability for people with disability. Trevor Annetts has been there since the beginning.

Fiona Jackson, Head of Marketing and Fundraising, Spinal Cord Injuries Australia

T

revor Annetts loves his family and friends, his job and his life in general, and if he had his time over, he would do it all again.

Fifty years ago last December, Trevor, then aged 16, dived off a wharf at Watsons Bay, Sydney, and sustained a spinal cord injury, leaving him with quadriplegia.

His life since then has seen many changes. He moved from hospital to home and then to Bon Accord nursing home in Coogee, where beds had been successfully secured for people with quadriplegia. He married Rhonda, had his son Daniel and took a job that he would stay in for more than 30 years. In the midst of all this he helped to set up a charity specifically for people with quadriplegia.

The charity he co-founded in 1966 was the Australian Quadriplegic Association (AQA), which became Spinal Cord Injuries Australia (SCIA) in 2003. Securing the beds at Bon Accord for people with spinal cord injury to transfer to from Prince Henry Hospital at Little Bay was one of AQA’s first steps.

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

Trevor says that while others were the brains behind AQA’s formation, he was very involved with fundraising and getting things done to assist plans for the organisation.

Today, people have hope, choice and options … to support them in gaining back their independence.

“In those days, there wasn’t an organisation supporting quads like myself. The only option we had was to return to our families to be cared for, or to move into an old people’s home to live out our days,” he recalls.

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

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

“My family initially looked after me and we had the community nurse visit. We lived in a three-bedroom apartment, so I was carried up and down the 20 stairs if I needed to go out. I spent a lot of that time at home, looking out the window, before I was offered the place at Bon Accord, where I stayed for 10 years.”

Since then Trevor has seen a lot of change within SCIA and society as a whole. Medicine has come a long way and attitudes have shifted in terms of the future for people with spinal cord injuries. Today, he says, people have hope, choice and options and organisations such as SCIA to support them in gaining back their independence. “It’s thanks to people like Damien Parks, who were instrumental in securing contracts for the SCIA Geo and Data team, that I’ve enjoyed a productive career,” he says.

“I’m pretty happy. I enjoy life’s simple pleasures, like sitting in the sun and pottering around with Rhonda,” he adds. ■

Phone: 03 6272 8816 paraquadtas.org.au

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

To learn more about SCIA’s journey over the past 50 years, visit the historical display at the SCIA Independence Expo in April 2016. Register to attend at scia.org.au/expo or call 1800 819 775. Entry is FREE. ■

YOUR CHOICE, YOUR CONTROL Supporting inclusion and independence with Australia’s foremost exhibition of aids, equipment & allied services

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or for more information phone 1300 789 845 or visit www.atsaindependentlivingexpo.com.au

ATSA Independent Living Expo www.scia.org.au 49

EVENTS

Summer | Autumn 2016 Social Events Each month at Spinal Cord Injuries Australia (SCIA) we get together with our clients and members to do something fun, social and active.

Anyone with a spinal cord injury or similar disability, plus friends and family, are invited to join us. RSVP for any of the below events to Rob Wynn: rwynn@scia.org.au or Heidz Haydon: hhaydon@scia.org.au or phone 1800 819 775.

MARCH 19 March, 8.30pm to 10.30pm Comedy Store The Biggest Comedy Show on Earth: 10 comics! 2 hours! 100s of laughs!

Address: Entertainment Quarter, Building 207/122 Lang Road, Moore Park, New South Wales, 2021 Cost: $20 per person (plus dinner at PJ Gallagher’s Irish Pub, if you choose to meet beforehand—see the details below) Bookings: http://bit.ly/1XRZsN3 Getting there: http://bit.ly/1Ty0gAc Dinner: Meet beforehand at 6pm Venue: PJ Gallagher’s Irish Pub Address: 1 Bent Street, Entertainment Quarter Moore Park, New South Wales, 2021 Menu: visit http://bit.ly/1ORgiEc Getting there: visit http://bit.ly/1NeGdoL Note: the Comedy Store is a licensed venue and therefore a parent or legal guardian must accompany all patrons under 18 years of age. It is advised to all parents/guardians that material may not be suitable. Accompanying an under-age patron is at the discretion of the parent/ guardian. In the case the event stipulates over-18s only, under-age patrons will not be permitted into the theatre.

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APRIL 23 April, 2pm Ten Pin Bowling Venue: Strike Macquarie Address: Macquarie Centre, Cnr Waterloo and Herring Roads, North Ryde, New South Wales, 2113 Cost: $12 per person (includes one game of bowling) Bookings: http://bit.ly/1R78otL Getting there: http://bit.ly/1NfqFih

MAY 28 May, 5.00pm to 6.30pm Vivid Dinner and Lights Cruise See the Vivid lights illuminate at 6pm.

Enjoy a three-course contemporary Australian set menu and house beer, wine and soft drinks.

Venue: Captain Cook Cruises Address: Meet at King Street Wharf No. 1 at 4pm Cost: $40 per person with a disability and $40 for a primary relative/ friend/attendant carer ($49 for each additional adult, $46 for each additional child) Bookings: http://bit.ly/1SNR50J Menu: details to follow closer to the date More details: http://bit.ly/1m8avR7 Note: if you are using a wheelchair ensure it is less than 80cm wide.

Arrive at the wharf at 4.30pm to be ready to board at 5pm.

EVENTS Industry Events

FEBRUARY 3–5 Disability, Human Rights and Social Equity Conference, The University of Melbourne http://mseiconference.unimelb.edu.au

MARCH 18 – 19 Inaugural Wheelchair Sports NSW Hunter Disability Sports Expo University of Newcastle, Callaghan Campus, New South Wales http://bit.ly/1RlhBxC

APRIL 1–3 The Digital Health Show Hordern Pavilion & Royal Hall of Industries, Moore Park, Sydney, New South Wales http://bit.ly/1fngPkd 15 – 16 Spinal Cord Injuries Australia (SCIA) Independence Expo 2016 Australian Technology Park scia.org.au/expo 18 – 19 ATSA Independent living Expo 2016 Melbourne Showgrounds, Victoria http://bit.ly/1zbUE4P

Wheelchair Sports NSW Angie Ballard was recognised as the Wheelchair Sports NSW (WS NSW) Athlete of the Year at the 2015 WS NSW Annual Awards Dinner. This welldeserved award comes after her record breaking year at the Swiss Nationals, where Angie broke the world record in the 400m and 800m. Angie also won two gold medals in the 200m and 400m at the IPC World Championships in Doha.

Angie has been a member of WS NSW since the age of 10. During her time as a WS NSW junior, Angie attended numerous junior come ‘n’ try days and countless Junior Wheelies Christmas Camps. Today, Angie is still heavily involved with our WS NSW juniors as a coach and mentor for our junior track group and come ‘n’ try days.

The highlight of the WS NSW junior program is the annual Junior Wheelies Christmas Camp held early December each year. Now in its 32nd year, the Christmas Camp allows WS NSW juniors to come together to socialise and try different wheelchair sports and

MAY 23 – 25 Australian Association for the Manual Handling of People, 7th Biennial Conference The Esplanade Hotel Fremantle

by Rydges, Western Australia http://bit.ly/1SvJKk0 30 – 31 NDS Disability at Work Conference National Convention Centre, Canberra http://bit.ly/1Io1MEl

A Wheelchair Sports NSW advertorial

Angie Ballard winning the 400m at the World Championships in Doha in October 2015.

recreational activities. Our volunteers and group leaders are our senior WS NSW members and athletes, serving as role models for our junior wheelies.

For more information or to get in contact with us, please head to our website http://wsnsw.org.au/

Visit Wheelchair Sports NSW at the Spinal Cord Injuries Australia (SCIA) Independence Expo. Register to attend at scia.org.au/expo or call 1800 819 775. Entry is FREE.

www.scia.org.au 51

SOCIAL MEDIA

keep in touch

follow u s here

Chris shares his real-life experience of using the #NDIS to fund his disability supports: http://bit.ly/ChrisNDIS

Spinal Cord Injury Awareness Week is here! The week raises awareness and challenges perceptions. Daniel Savage is an artist whose thought-provoking art work highlights the week’s aims.

Read more: http://bit.ly/SCIAW2015

Do you love puppies? We’re excited Australian Support Dogs Inc. (ASDOG) will be at the SCIA Independence Expo with their dogs for people with disability. You just might meet your new best friend—register here: http://bit.ly/scia_registration (ASDOG is a not-for-profit partner of the #SCIAIndependenceExpo)

We’re so excited for Matthew Pierri, one of our Melbourne Exercise Services clients, who has been awarded the 2016 Victorian Rhodes Scholarship at the University of Oxford. Congratulations Matt! http://bit.ly/ congratulationsMatthewPierri

facebook.com/spinalcordinjuriesaustralia

linkedin/company/spinal-cord-injuries-australia

youtube.com/spinalcordinjuriesau

twitter.com/SCIAust

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ndependenceexpo Spinal Cord Injuries Australia

15–16 April, 2016 | Australian Technology Park, Sydney Explore amazing products, equipment and technology on display. Be inspired by information packed workshops. Discover services to help you overcome barriers.

There will be travel, sport and art - plus entertainment and fun activities for everyone. Entry is FREE and funding available for travel costs.^*

Register today at scia.org.au/expo and go into the draw win a $500 gift card* *For full terms and conditions visit scia.org.au/expo ^For more information visit scia.org.au/expo

scia.org.au/expo | 1800 819 775

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