Accord 2016 autumn

Autumn 2016

The Big Day Off James McQuillan, the inspiration behind this fundraising initiative. + INTO THE UNKNOWN + IS ADVOCACY DEAD? + TRANSPORT BOOST

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18 Features

From the CEO From the President Expo 2016 News Fundraising Daily Living

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Information and Resources Technology

10 The Big Day Off 14 Jumping into the Unknown

Review Legal Rights Calendar Social Media

Policy and Advocacy Regional Round Up

Cover: James McQuillan, a country AFL player who sustained a serious spinal cord injury and inspired the Big Day Off.

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

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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

Keeping the faith: MEMBERS FIRST As we approach the full rollout of the National Disability Insurance Scheme (NDIS) from 1 July, it looks like we are going to have a scheme that will make a significant difference to the lives of people living with a spinal cord injury and other disabilities.

2. W e will offer our services as widely as possible across Australia.

3. W e will make our services available to people with other disability types if they can benefit from them.

4. W e will not lose sight of our core purpose and mission and not become an organisation completely focused on the bottom line.

There have been fears expressed recently about a possible lack of funding for the scheme, the way the National Disability 5. W e will find a way to continue to provide Insurance Agency (NDIA) operates and services that are highly valued but which continued domination by powerful service may not be funded by government in the providers. All of these fears are only natural future, such as peer support, information and such issues are almost certain to arise and advocacy. with the rollout of such a significant social change initiative. On the other hand, there 6. W e will continue to do ‘whatever it takes’ have been many positive stories about to assist our members and other clients; the impact on the lives of individuals and this means we will provide as much their families in the trial sites and positive assistance as people need and always put reports along the lines of “The NDIS will our members’ needs first. pay for itself ” and so on.

I think it is important to spell out these principles very clearly for the benefit of I have always been keen both our members and our staff. We began to ensure our organisation life in 1967 as an organisation for and by people with a spinal cord injury, and just doesn’t lose sight of why because the way the organisation is funded it was established and the will be changing doesn’t mean that what people it’s here for. we stand for needs to change. I have always been keen to ensure our organisation As I have said in previous columns over doesn’t lose sight of why it was established the past few years, it will be very hard to and the people it’s here for. get the NDIS right at the beginning and Many organisations that started as worthy it will take many years to learn the early organisations with the goal of creating lessons and respond to them to make sure the scheme is as good as it can be. Nothing positive social change have become no in life is perfect and it is unlikely that such more than businesses with a focus on a scheme will be, but it needs to be as close financial outcomes and, dare I say it, the needs of their staff and management to perfect as we can possibly make it. more than the needs of their members. I We at Spinal Cord Injuries Australia know from recent observations that many (SCIA) have been looking at the impact organisations are going to be taking an of the NDIS on our organisation for some even more commercial approach once time and we have agreed on some guiding the NDIS is introduced, which I think is principles about how our organisation sad, as that won’t always produce the best will operate in this new world: outcomes for their clients.

1. W e will remain a specialist organisation focusing primarily on the needs, hopes and desires of people living with a spinal cord injury.

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You can rest assured that SCIA will continue to put our members’ interests first, both during and after the transition to the NDIS. ▪

JOAN HUME FROM THE PRESIDENT

Yearning for a CURE? How come the rats get to have all the fun? Laboratory rats, I mean. Especially those used in the experiments involving paralysis cure research. How come there are thousands of them running around the research labs of the USA, Europe and Asia, now apparently cured, after deliberately inflicted spinal cord injuries? Yet how come in over 50 years of experimentation, and clinical trials with millions of dollars poured into research, there is not one single instance of a human being’s total recovery from a complete spinal cord injury after clinical, surgical and/or pharmaceutical intervention?

Of course there have been countless partial recoveries from incomplete injuries and complete recoveries from spinal cord contusions and less severe compressions. There have also been some notoriously dodgy claims of paralysis cure by some doctors in India and China using various forms of stem cell therapy. Many desperate paras and quads have made the pilgrimage from all over the world and paid thousands of dollars for highly questionable procedures which promise much and deliver little, if any, permanent functional improvements.

There is, however, the recent case of Polish paraplegic Darek Fidyka, a former firefighter, whose spine was severed by a knife attack in 2010. Fidyka underwent olfactory ensheathing cell transplantation in 2014 along with gruellingly intensive physiotherapy and has made a promising partial recovery with return of some muscle and sensory function. Many newspaper articles, of course, claim “the miracle cure” but despite the hype, the reality is Fidyka can only walk very carefully and slowly with the aid of calipers and crutches. Yes, a great improvement but hardly a total recovery.

In early February, yet another claim of a breakthrough in treatment for people with spinal cord injuries, especially paraplegics, was made on the front page of The Sydney Morning Herald. This claim

from a Melbourne team of researchers involves the invention of a so-called bionic spine comprising an electrode inserted into a blood vessel in the brain which in turn activates, not the damaged spine itself, but an exoskeleton worn around the trunk and lower limbs of the paralysed body.

These exoskeletons, by the way, cost anything from US$40,000 to US$100,000 and consist basically of a more sophisticated form of the old thigh high caliper technology. So no improvements in sensory, motor, bladder, bowel or sexual function but the mobilisation of an external contraption whose use also involves a trained helper to accompany one’s leisurely stroll to the local shops for a litre of milk. And quads need not apply.

Check them out on YouTube.

What infuriates me about the way these ‘inventions’ are reported … is [the emphasis placed] on the apparent importance of walking …

Perhaps I’m missing something but how is this a ‘breakthrough’? I’m not against paralysis cure research but I have a real problem with an able-bodied person’s perception of what is critical to us.

What infuriates me about the way these ‘inventions’ are reported by the media and even researchers themselves is that the emphasis is always on the apparent importance of walking, as if that is the most crucial and sought-after functional improvement that people with spinal cord injuries yearn for. It’s my guess that the majority of quads would long most for return of arm and hand function enabling an independent existence. And paras would prefer restoration of other bodily functions prior to walking like a robot with a chaperone.

Frankly I’m barracking for the rats: I’ll have what they’re having. ▪

EXPO 2016

SCIA Independence Expo 2016 More than 1,000 people poured through the gates and tuned in to live streaming to experience the latest innovations in independent living at SCIA’s Independence Expo on 15 and 16 April.

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ustralian Technology Park Sydney hosted the biggest and best SCIA Expo yet, with attendees taking advantage of a diverse range of 74 exhibitors, 11 workshops and 18 speakers.

The quieter life was also on offer, with gentle ASDOG assistance dogs charming visitors. Heidi, an ASDOG, helped one young attendee remove their sock without nipping any toes.

“I am blown away by what this event has become,” says SCIA CEO Peter Perry. “To the exhibitors, it’s a unique way for them to talk directly to people who buy their products. To our members, it’s an easy and comfortable way to check out all the latest products, services and information. And for our staff, it’s a great opportunity to meet our members and hear what’s on their mind.”

But if a new or modified car was more your style, specialist vehicle modifiers were on hand. PME Auto Conversions was one of them. Among a number of conversion options, PME Engineer Bill Georgas, who has paraplegia, brought along his ‘yacht of the land’, an enormous mobile home away from home.

The Wheelchair Sports NSW Sports Arena proved popular, with many unleashing their sporting talents. Children and adults alike tried their hand at shooting hoops, returning serve, scoring tries and skateboarding.

Wheelchair Rugby League Australia was also among the sports representatives, showing how Wheelchair Rugby League allows athletes with disabilities to compete with and against people without disabilities.

A number of wheelchair mobility specialists exhibited their latest technology. Permobil highlighted shoulder protection technology, exploring exercises, wheelchair set up and propulsion, and power assist technology.

Turning to continence, Wellspect Urology Nurse Julie Digger made a key contribution, answering many questions on a subject that is of utmost importance to all those with a spinal cord injury.

Quietly meandering around the Expo wasn’t an option, when SCIA threw open the doors to its brand-new NeuroMoves exercise services.

The NeuroMoves crew had the whole place moving and shaking with the latest technology in treadmills, activity-based therapy, functional electrical stimulation and strength and conditioning.

The Expo also provided an opportunity to garner information on the complicated and emotional world of legal dealings, with Slater and Gordon Lawyers on hand to listen and answer questions.

More than 300 people attended the Expo’s workshops, which covered choosing the right wheelchair cushion, National Disability Insurance Scheme (NDIS), vehicle modifications, protecting your shoulders, health, lifestyle, travel, sexuality and chronic pain.

ASDOG assistance dog charms a visitor at Expo.

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The spotlight also landed on established and budding artists in the Expo’s art exhibition.

Daniel Savage’s photography challenged society’s preconceptions. Susan Wood’s multidisciplinary style highlighted her eclectic and diverse range.

Cobie Ann Moore’s illustrations explored suffering and beauty. Sue Murray made it possible for people with limited movement to unleash

EXPO 2016 their photographic creativity—many selfportraits were on display.

The craft markets also showcased the talents of several other artisans. On display were handmade products by talented artisans with disability from around the world, prints, cards, jewellery, crafted glass, needlework, children’s art prints and airbrushed artworks.

Let’s not forget the SCIA history display— a taste of what’s to come with SCIA’s looming 50th anniversary.

This is just a glimpse of the two dynamic days of SCIA’s Independence Expo 2016.

Stay tuned for details of the next Expo— you won’t want to miss it.

All of the workshops can still be viewed online by visiting SCIA’s You Tube channel: http://bit.ly/1UfYtmI ■

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Karen Piek has won the $500 gift card after her Expo pre-registration number was randomly selected.

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NEWS

Brook wins canine hero award

Latest Fellow 43

Shetland Sheepdog Brook has been recognised for her bravery in rescuing her owner, Charlene Meade.

SCIA’s Annette Bolderen has been awarded the 2016 Fellow 43 Medal.

Charlene has a spinal cord injury and became bogged in her wheelchair in Centennial Park in Sydney last year.

Each time she waved and called out Brook also barked, but this failed to attract attention.

Charlene was overjoyed that Brook won the award. Charlene is involved with Shetland Sheepdogs obedience trials and has won awards for her work in this area.

For more on the Canine Hero Awards, visit www.sydneyroyal.com.au/2301.htm

Annette is one of SCIA’s Occasional and Emergency Community Services after hours registered nurses. She was honoured with the medal in April, following in the footsteps of another SCIA nurse Ruth Hamilton, who was awarded the medal in 2011.

Brook then ran to a nearby group of people and barked repeatedly at them.

At first, a man in the group waved back at Charlene but then realised something was wrong and came to Charlene’s aid.

On 28 March, Brook took out the Australian Animal Registry (AAR) Companion Dog Award category at the inaugural Royal Agricultural Society of NSW Canine Hero Awards.

The award was bestowed by the Governor-General Sir Peter Cosgrove and was open to any dog in private ownership who had displayed an exceptional human-animal bond.

Fellow 43 is a roll that recognises individuals who contribute and maintain support for people with disability. It’s named after the ward 43 spinal unit at the now closed Lidcombe Hospital in NSW.

“I was humbled and honoured to receive the Fellow 43 Medal. Neither Ruth, myself or any nurse expects to be recognised or rewarded,” Annette says.

Charlene Meade with her dog Brook.

“Our clients are extraordinary. To be of service to them and to nurse them is an absolute honour and it’s such a privilege to have received this medal on their behalf.”

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NEWS

Brain waves harnessed

SCIA helps you get ready for the NDIS Now is the time to get ready for the new model of support that is set to revolutionise how you live your life.

The National Disability Insurance Scheme (NDIS) is headed your way soon, rolling out across Australia in earnest from July 2016.

Research into a new device is underway that is hoped might help people with spinal cord injury walk again through the power of thought.

A paperclip sized electrode (stentrode) is implanted in a blood vessel next to the brain and records electrical activity.

This activity “has been shown in preclinical trials to move limbs through an exoskeleton or to control bionic limbs,” according to The University of Melbourne.

The first in-human trials will begin at The Royal Melbourne Hospital in 2017.

Neurologist at The Royal Melbourne Hospital and Research Fellow at The Florey Institute of Neurosciences and the University of Melbourne, Dr Thomas Oxley, said: “The development of the stentrode has brought together leaders in medical research from The Royal Melbourne Hospital, The University of Melbourne and the Florey Institute of Neuroscience and Mental Health. In total 39 academic scientists from 16 departments were involved in its development.

“We have been able to create the world’s only minimally invasive device that is implanted into a blood vessel in the brain via a simple day procedure, avoiding the need for high risk open brain surgery.

The NSW Government is leading the way by committing to around half of the state’s regions commencing implementation from July this year, with the other half commencing from July 2017. The other states will roll out the scheme more gradually from July this year with various models based on geographic boundaries, age, etc. Check out the NDIS website for more details.

In NSW, the NDIS has already been operating in the Hunter as a trial site since 2013 and Nepean Blue Mountains for children and young people under 18 years of age since July 2015. Various trial sites have also operated in other states. The first regions in NSW to fully transition to the NDIS from 1 July 2016 will be Central Coast, Hunter New England, Nepean Blue Mountains, Southern NSW, Northern Sydney, South Western Sydney and Western Sydney.

Some regions in other states will also start from July this year.

Spinal Cord Injuries Australia (SCIA) 2016 0302 SCIA NDIS Support 90x130 OL.pdf 1 2/03/2016 can help you make the move to the

NDIS and support you while you are in the scheme.

Keep in mind that if you currently receive government funding your information will be provided to the National Disability Insurance Agency (NDIA), which is the agency managing the NDIS. But if you have been supporting yourself you will most likely need to contact the NDIA to become part of the scheme.

Once the NDIA has your details and your eligibility has been assessed it will invite you to a planning meeting.

Generally most people with a spinal cord injury who are 65 years and under are likely to be eligible. NDIA advises, “People who are aged over 65 years cannot access the scheme. If you are over 3:06:50 PM (continued on page 35 ▶)

“Our vision, through this device, is to return function and mobility to patients with complete paralysis by recording brain activity and converting the acquired signals into electrical commands, which in turn would lead to movement of the limbs through a mobility assist device like an exoskeleton …”

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Co-principal investigator and biomedical engineer at The University of Melbourne, Dr Nicholas Opie, said currently exoskeletons are controlled by manipulating a joystick to switch between the elements of walking. “The stentrode will be the first device that enables direct thought control of these devices,” he said.

Visit http://tinyurl.com/z6gpx5n CY

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FUNDRIASING

Star fundraisers

Corporate partnerships

A big thank you to Harley Lewis. Harley is a Victorian sportsperson who is lucky to be walking after a serious neck injury sustained on the footy field in August 2015. Amazingly, a permanent spinal cord injury was avoided by just 1mm.

Harley recently competed in his first triathlon to raise money for Spinal Cord Injuries Australia (SCIA).

We are excited to announce the launch of a new partnership with Permobil Australia. Permobil Australia is a worldrenowned industry leader in pressure care, mobility and positioning solutions. With a similar philosophy to SCIA, Permobil Australia uses technology to help people with physical disabilities overcome barriers to independence, allowing them to live the life they choose, whatever that might be. Permobil Australia will be supporting SCIA’s events program, which is aimed at eliminating social isolation for people living with spinal cord injury and other physical disabilities.

Harley says his narrow escape from a life-changing injury inspired him to compete in the Kondak Tri Barwon Heads triathlon in Victoria on Sunday, 21 February. With no previous triathlon experience, Harley completed the physically demanding 400m swim, 14km cycle and 4.4km run to challenge himself with a new sport and raise vital funds for SCIA, with the help of triathlon organisers Pete and Lincoln from South West Race Management. We are thrilled to count Harley among our supporters and his amazing efforts have raised nearly $4,000 for SCIA. If you have been inspired by Harley’s story and would like to raise vital funds for SCIA, there are lots of events you can take part in. Visit the events page on the SCIA website to see if there’s anything you’d like to challenge yourself with.

Alternatively, there are many other great ways to get involved with SCIA, whether it be holding a fundraising barbecue within your community or volunteering at an event. Contact SCIA to find out more on 1800 819 775. ■ Harley Lewis

We are also thrilled to be continuing our longstanding relationship with

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If your company would like to discuss partnership opportunities with SCIA, please call 1800 819 775. ■

Trusts and foundations With the support of Lotterywest, SCIA is currently undertaking a feasibility study to establish Choices in Western Australia. Choices offers an innovative, short-term accommodation service whereby newly injured people and their families can have a break from the hospital and prepare for the transition into the community following discharge.

We thank Lotterywest for its generous grant of $26,100 to conduct the feasibility study.

Thanks also go to the NSW Government for awarding SCIA a grant of $25,000 through its Community Building Partnership program. The grant will fund the refurbishment of SCIA’s Australian Disability Enterprises (ADEs) building

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Slater and Gordon Lawyers. Both SCIA and Slater and Gordon have a long history of fighting for the rights of injured people to ensure they have access to the support and services they are entitled to and deserve. “Our clients and their families are courageous people who have been hugely impacted by unforeseen circumstances and we hope our partnership with SCIA will help to promote independence and improve their quality of life,” says Motor Vehicle Accident Group Leader in NSW, Genevieve Henderson.

to make the working environment more efficient, create new workspaces and improve the kitchen amenities for people with a physical disability.

SCIA is also working hard to raise money to establish the first dedicated locomotor training and activity-based therapy facility for children with a physical disability in Melbourne. The facility will help children with any neurological condition to maximise their functional capacity and optimise growth and development during the crucial early stages of life. Thanks to The Pierce Armstrong Foundation, SCIA received $10,000 to go towards the purchase of a children’s specialised rehabilitation treadmill for the facility. ■

FUNDRAISING

Grab hold of a Spill Free future Due to popular demand and special requests, SCIA is proud to be selling spill-free mugs to members and supporters. The mugs have a vacuum seal lid and suction cap on the bottom of the mug that is released simply by lifting the handle in an upright motion. They are lightweight and durable and can be used with either hot or cold liquid.

The mugs are branded SCIA and have an illustration drawn by SCIA staff member Cobie Moore—so we are proud to be selling them for the same price as eBay and Amazon. They make great gifts and have been recommended and endorsed by the robust team at SCIA. Do yourself a favour and purchase your spill-free mug from SCIA today.

Available now: $20 each (+ $5 postage and packing)

Contact SCIA’s peer support team on 1800 819 775 to purchase one today.

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COVER

Nathan Hindmarsh and Sandra Sully

Do you know that taking a day off from work can help change the lives of people with spinal cord injury?

Helen Borger, accord Editor

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COVER

Labelling it the “quintessential” Australian charity

concept, media personality Sandra Sully launched the Big Day Off, following a localised pilot in 2015.

Now in its second year, the concept was inspired by former AFL player James McQuillan. James sustained quadriplegia in 2014 during a routine collision with an opponent in a country AFL match in Albury–Wodonga.

The Big Day Off involves businesses registering online and offering days off that staff can win by buying raffle tickets before 30 June 2016. All the money raised goes to spinal cord injury support services and finding a cure for spinal cord injury.

The beneficiaries are Spinal Cord Injuries Australia (SCIA) and SpinalCure Australia.

“The best idea is a simple one,” said Ben Hollands from Dutch Media, speaking at the launch. Ben described how James’s story had touched him, so he joined forces with James and other Albury–Wodonga individuals and businesses to get the concept up and running.

The Big Day Off charity is managed by a board comprising: Jon Retford (Board Chairman), General Manager, Wilson Transformer Company; Kylie King, Journalist and Communications Strategist; Ben Hollands, Managing Director, Dutch Media; Adrian Kay, Practice Principal, Gardens Medical Group; David Koschitzke, Partner, Harris Lieberman; Kevin Mack, Policeman, Councillor Albury City and 2012 Premier’s Community Service Award recipient; and Cameron Diffey, Partner, Johnsons MME. In a message of support, the Federal Minister for Health, Aged Care and Sport, Sussan Ley, said: “This concept, while inspired by James’s circumstances, aims to raise money and awareness for others in need of financial support. Funds raised will go towards important research into the treatment and, who knows, maybe a future cure in this field.” The Minister encouraged all businesses to get involved.

In jest, Sandra and Ben semi-likened the concept to former Prime Minister Bob Hawke’s pronouncement after Australia won the America’s Cup in 1983: “I tell you what, any boss who sacks anyone for not turning up [to work] today is a bum.” But this time bosses would be “mugs”, not bums, for not giving a day off, they said.

SCIA and SpinalCure representatives also spoke at the launch, explaining how the funds raised would be spent. “When you have a spinal cord injury everything changes,” said SCIA CEO Peter Perry. “It’s been explained to me that having a spinal cord injury is like being picked up and plonked in a foreign country.” While government funding provided the basics, such as equipment and personal care, it didn’t cover all the support needs required to navigate living with such an injury—and this was where SCIA came in, Peter added.

Alex McKinnon at the Big Day Off launch.

SpinalCure CEO Duncan Wallace highlighted that “the sole aim” of his organisation “is to find a cure; it is inevitable. It just takes time and funding.”

Duncan added: “We are attacking it from two fronts: treatments in the first few hours of an incident to reduce the level of injury and treatments to reconnect the damaged nerves in the spine.”

[Finding a cure for spinal cord injury] is inevitable; it just takes time and funding.

Former Newcastle Knights player Alex McKinnon, who sustained quadriplegia while playing NRL, also spoke at the launch. He said that while he had the support of the NRL and his family, others didn’t www.scia.org.au

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COVER CONT’D

(Left to right) James McQuillan, Sandra Sully, Duncan Wallace and Alex McKinnon at the launch of the Big Day Off.

always have that, which made the Big Day Off important, as the funds raised would help change everyone’s lives.

Sandra, who is also a Big Day Off Ambassador, reinforced that no-one was immune to the effects of spinal cord injury and everyone was just a small step away from sustaining such an injury—all it took was a slip, trip or a fall.

NRL icon, former Parramatta Eels Captain and now Big Day Off Ambassador, Nathan Hindmarsh, said before the launch he couldn’t imagine life with a spinal cord injury. However, from the sidelines it looked like it had a huge impact on family life, employment and many other things, he said.

A close friend of his recently sustained a spinal cord injury, which has given Nathan a whole new perspective on the effects of the injury.

Regional business Joss Facility Management is a leading employer in the Big Day Off. They were there from the start, and they are back again this year. Joss Facility Management also puts its money where its mouth is by employing James two days a week while he studies accountancy at Charles Sturt University in Albury–Wodonga. James was initially studying physiotherapy but had to change courses after sustaining quadriplegia.

One of last year’s winners from Joss Facility Management, Wayne Oakman, said: “I was one very excited Big Day Off winner in 2015; the last time I had won anything was a chook raffle back in about 1995; my Big Day Off was spent with a fishing rod in one hand and beer in the other.”

SCIA partner Johnson & Johnson Medical (Codman Neuro & Spine) is also on board this 12

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year and encourages all employers to do the same, saying the Big Day Off was a unique and fun way to engage staff and raise money to help people.

This concept … aims to raise money and awareness for others in need of financial support.

Last year The Personnel Group got into the spirit of things. “Across our organisation it was a game, as we had six different sites competing, [to see] who would donate the most based on office size …,” said a company spokesperson. “Winners were very vocal when they took their day off— letting everyone know.

“As an organisation that supports … people with a disability, this promotion was close to our hearts, and staff really responded well to it.”

Many other businesses have signed up, such as NRL, AFL and News Corp Australia.

This year’s other Big Day Off Ambassadors include Greater Western Sydney Giants’ Jack Steele, former Wallaby Adam Freier, and jockey Damien Oliver. Other supporters of the Big Day Off include RedBalloon Founding Director Naomi Simson and ARL Cowboys Co-Captain Johnathan Thurston.

Visit bigdayoff.org to register for the Big Day Off. Make sure you register and sell your raffle tickets before 30 June 2016. ■

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FEATURE

Stacey Copas

In 2012, Stacey Copas quit her job, took a massive leap of faith in herself and, with no plan in sight, started her own business.

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

Stacey has used her life experience to become a

and the real turning point for me was volunteering keynote speaker on resilience and turning adversity in the Solomon Islands. I’ve always been positive and into an asset, to write a book on the topic and to start ambitious but I learnt how to turn weakness into strength,’’ she says. training for the 2020 Paralympics in Tokyo.

She says it was a trip to the Solomon Islands, where Stacey also realised she had something valuable to share and, as a woman with quadriplegia on the she did some volunteer work with people with speaking circuit, had something unique to offer. disability, that was a game changer. She credits the trip as a life-changing experience that she draws on She started speaking to audiences about her lived experience and found people responded positively. in her work today.

She says the more she spoke, the more she was “I’m really fortunate to have had some great mentors approached to do further speaking engagements, until she made the brave decision to commit to and coaches who inspired me and taught me to believe in myself. I’ve learnt a lot from other people this business full-time.

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FEATURE She also branched out into penning her thoughts and experiences. “It was a business mentor who suggested I write an ebook to test content and build my community, so a couple of years ago I started writing.

I procrastinated a bit before I really started … and [then] it became all-consuming,” Stacey says.

Stacey at a book signing with a fan.

In 2014, Stacey received a grant from the Aim for the Stars Foundation, which was founded by pro surfer Layne Beachley, to complete her book, How to be Resilient. It has been endorsed by Brian Tracy, Layne Beachley and Jack Delosa and has featured in the Financial Review and The Australian and on ABC Radio.

As a self-confessed perfectionist, Stacey says the process of writing a book helped her to learn that “done is better than perfect”, so she focuses now on bettering her best.

In 2015, Stacey was asked to be an Ambassador for the Aim for the Stars Foundation and she now mentors other young grant recipients of the foundation. “Aim for the Stars gives young women and girls who are excelling in something a legup through financial grants to really explore the possibilities and I’m excited about being involved with that,’’ she says.

Stacey sustained quadriplegia at the age of 12 following a devastating accident in a backyard pool. It was the first week of the summer holidays and Stacey was perfecting her dive when she hit the bottom of the pool with her head. Her younger brother, aged 10 at the time, raised the alarm.

As a self-confessed perfectionist, Stacey says … writing a book helped her to learn that “done is better than perfect”.

What followed was a seven-month stay at Royal North Shore Hospital. Stacey says her parents never wrapped her in cottonwool, instead encouraging her to finish school and enter the workforce like her friends. She credits her family with her ability to think bigger and be competitive in everything she does.

Being competitive is something that Stacey will need in spades to qualify for the 2020 Paralympics. She’s training for the 100-metre wheelchair sprint and, if successful in being selected, will be the only woman in her classification in Australia. Stacey has no tricep muscles in her arms due to her injury, so to propel her wheelchair she uses her biceps and shoulders

to pull the wheels towards her from back to front, instead of the traditional method of pushing the wheel forward.

Stacey says she feels grateful for the support she has received from others, particularly in securing sponsorship to help her attend world championships and compete in her track event. She is planning to receive her athletic wheelchair soon, so the training will begin in earnest.

“Once I get my new chair I will start training six days a week, which will be a balance between gym, track training and core training,” she says.

Stacey has a lot going on. Refining her business and recently relocating back to Sydney, as well as attending her athletic training, means she has to make sure she takes time out to socialise and she plans her time accordingly.

“I’m pretty fortunate. And over the years I’ve learnt to value the difference between confidence and arrogance. With this confidence I continue to seek challenges and think bigger,” she says. ■ www.scia.org.au

15

DAILY LIVING

Is advocacy dead?

The dismantling of New South Wales Government ageing and disability services has the potential to jeopardise advocacy.

Joan Hume, President, Spinal Cord Injuries Australia

ome months ago the New South Wales (NSW) Minister for Disability Services, It is not as if SJohn Ajaka, was reported to have stated within the context of the National Disability discrimination, Insurance Scheme (NDIS) rollout that disability advocacy was dead. Whether those his actual words and what he meant may be debatable, but certainly the future of abuse of human were public services traditionally provided by the NSW Department of Ageing, Disability rights or denial and Home Care (ADHC), including the funding of advocacy services, is bleak. of services ... will The plan is to completely dismantle ADHC by 2018 and hand over all of its aged disability services to the private sector or the federal government. This is being vanish in a puff of and implemented right now, firstly with the sale of the Home Care Service of NSW to smoke as soon as Australian Unity, a health insurance mutual company and personal care provider, which is scheduled to take over the service early in 2016. The sale price was the NDIS arrives. $114 million.

Both clients (approximately 51,800) and staff (approximately 4,000) are being transferred unilaterally to Australian Unity, which claims it will provide continuity of care and employment to all those affected. That remains to be seen. Certainly there was little freedom of choice in this move for either clients or staff.

The Public Service Association of NSW argues that the privatisation of NSW Government disability services is totally unnecessary for the implementation of the NDIS. It will mean that 40 per cent of state disability services will eventually disappear and 14,000 jobs will be removed from the state public sector. Many of these jobs are meant to be transferred to the Commonwealth or private sector, but we will have to wait and see how this plays out. At the moment none of the other states is planning such a drastic change in service provision, although this may change in the future as the implications of the scheme in its practice become clearer.

However, regardless of what NSW does with ADHC services, there will always be a need for disability advocacy. It is not as if discrimination, abuse of human rights or denial of services, whatever they might be, will vanish in a puff of smoke as soon as the NDIS arrives in your suburb.

For at least three decades, both the federal and state governments have funded disability advocacy services in some form. Under its National Disability Advocacy Program (NDAP) the federal government funds a number of agencies—usually, but not exclusively, national bodies—to provide various types of citizen, family, legal, individual, self and systemic advocacy, depending on need, the issue itself and the nature of the disability. A person with an intellectual disability, for example, would be more likely to need citizen advocacy that matches an individual to a volunteer to speak on their behalf on a particular matter. A person with a physical disability is more likely to need support with an individual issue, such as help with a complaint about accessing a disability support pension.

State-funded advocacy services cover similar types of advocacy but focus on services provided by the state, including school education, TAFE, public transport, wheelchairaccessible taxis, housing and health care. Such an advocacy service may assist, for example, with the lodging of a complaint under NSW anti-discrimination legislation.

None of these services is directly influenced by the NDIS, although indirectly the scheme may better enable people with disabilities to use them.

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DAILY LIVING

In ‘Defining disability: Will the NDIS support all disabled Australians who need care?’, published in The Sydney Morning Herald early last year, disability advocate El Gibbs cited the Australian Bureau of Statistics, saying about 400,000 people in NSW have a disability and up to 240,000 of them have a high degree of disability. Considering this, she asked, “With 140,000 people expected to be eligible for the NDIS, what will happen to the other 260,000 people? Where will they get support?” This also raises another question: who will advocate for their needs if state-based and statefunded advocacy organisations such as the Physical Disability Council of NSW and the NSW Council for Intellectual Disability lose their funding?

Recently, representatives of Spinal Cord Injuries Australia, the Physical Disability Council of Australia, IDEAS and Ability Inc. met with the Deputy Secretary of ADHC, Jim Longley, and the Executive Director of NDIS Implementation in NSW, Samantha Taylor, to discuss the future of advocacy services in this new era of uncertainty and change. Some of the issues raised were that there would be no guarantees of ongoing funding for existing advocacy organisations or, indeed, recognition for the years of tireless community goodwill and trust they have built up. They are expected to find other sources of revenue or else cease operation. It was suggested that as NDIS packages contain provision for advocacy, organisations could charge a fee for services they have traditionally provided for free. Apparently all will be resolved with the preparation by all state government departments of disability inclusion plans overseen by both the NSW Premier’s Department and the Disability Council NSW. Pressing questions remain, however. Who will monitor the broader systemic issues of the accessibility of public infrastructure, the accountability of privatised services and the plight of people with disabilities who are unable to access any publicly funded services?

Is advocacy dead? No, for many the fight may be just beginning. ■

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Wo r k i n g i n p a r t n e r s h i p www.scia.org.au 17

POLICY & ADVOCACY

Squeaky Wheel

Contributors:

More accessible transport needed Additional changes to the New South Wales (NSW) Wheelchair Accessible Taxi (WAT) service are needed to make it an effective form of transport for people with disability.

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.

and WAT drivers and operators made accountable. In particular, SCIA has compiled a number of issues discussed below that need to be addressed.

WAT licences must include a condition that drivers can be directed to pick up a passenger with disability by a booking dispatch manager, particularly if the passenger’s booking is overdue. The Late last year the NSW Government current licence condition to give priority responded to the recommendations of to people with disability isn’t working, the NSW independent Point to Point with WAT drivers rejecting bookings and Transport Taskforce. The taskforce passengers waiting one hour or longer examined the future sustainability of taxis, for a WAT. hire cars and emerging point-to-point transport in NSW, including ride-sharing. Also, WAT drivers should not engage the meter while setting up their vehicle The taskforce recommended an overhaul to accommodate the wheelchair user. of services, including the legalisation of The NSW Government is increasing the ride-sharing services.

WAT Driver Bonus Incentive Scheme The NSW Government’s response to the from $7.70 (ex GST) to $15 (ex GST), taskforce recommendations included which would cover the time spent helping many WAT driver incentives to encourage the person into the WAT. This is similar WAT drivers not to abandon the taxi to a fee paid to WAT drivers under the industry (and to possibly attract more Victorian Multi Purpose Taxi Program drivers), such as: (MPTP) subsidy. Under the MPTP subsidy, WAT drivers must not engage • simplifying the specifications the meter until the passenger’s wheelchair for vehicles, although security restraints and seatbelt are applied. requirements remain for taxis increasing the Taxi Transport Subsidy Further, WATs should also be regularly inspected to ensure the wheelchair Scheme (TTSS) cap from $30 to $60 restraints and seatbelt are operating.

• increasing the WAT driver incentive If restraints need to be repaired or payment from $7.70 to $15 replaced it should be done as soon as possible and the WAT not allowed to • removing the $1,000-per-annum WAT licence fee in metropolitan areas operate until they are. WATs should also be subject to random on the spot • expanding from $1 million to $5 inspections. million the WAT interest-free WAT taxi meters should be able to loan scheme funding for vehicle ‘announce’ the taxi fare or use an modifications up to $30,000, and alternative technology for people who • subsidising the central booking are blind or vision impaired. service for WATs in Sydney.

Passengers with disability should also be The Spinal Cord Injuries Australia provided with a fact sheet and/or a rights (SCIA) Policy and Advocacy team raised and responsibilities brochure to ensure a number of issues concerning ridethey are informed about how the WAT sharing services in its submission to the service operates and to ensure they are taskforce. It also requested a roundtable being transported safely and are being meeting with government and industry charged the correct taxi fare. stakeholders to seek the inclusion of a WAT driver training courses should also number of additional recommendations include people with disability and cover in the final report. However, SCIA was informed that in relation to the roundtable checking that the WAT’s wheelchair restraints are in the vehicle and it would be more appropriate to provide operational, and that the movable feedback to the pending review of NSW taxi driver incentives and driver training. seats can be moved.

•

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.

In addition to the government response to As uberX vehicles are owned and operated the taskforce, SCIA wants WAT services to by individuals, SCIA wants the NSW Government to ensure that uberX services be provided in a timely and safe manner 18 accord magazine

Squeaky Wheel include accessible vehicles for people who remain seated in their wheelchairs. It also wants to ensure these WATs are compliant with NSW Transport's WAT minimum allocated space protocol, wheelchair restraints and boarding ramp regulations.

In response to an SCIA letter, the NSW Minister for Industry, Resources and Energy, Anthony Roberts, indicated that people with paraplegia who require power wheelchairs remain ineligible for the rebate. People with quadriplegia are eligible.

He said the government had reviewed the Medical Energy Rebate and the Life Support Rebate and sought advice from NSW Health. He added that this had resulted in changes being made for vulnerable customers, and those with the most acute needs, which was especially the case in considering the extension of

Furthermore, SCIA is aware that since uberX started in NSW, there have been a number of WAT drivers rejecting radio bookings, and people with disability have been left waiting for one hour or longer for a taxi. Frankly, WAT drivers should not be complaining about the impact of uberX taking their work if they are not accepting radio bookings. They can’t have it both ways. That is why there is an urgent need for the NSW Government’s regulation changes to ensure WAT licence conditions include the ability for WAT the Life Support Rebate to those booking dispatch managers to direct WAT with quadriplegia. drivers to accept radio bookings.

Taking the matter further, SCIA has More information about the Point to Point written to the NSW Health Minister to Transport Taskforce recommendations, clarify why people with paraplegia who NSW Government response and new are required to use power wheelchairs regulations are available at: are deemed ineligible, and to seek www.transport.nsw.gov.au/pointtopoint the Health Minister's support for this situation to be reconsidered.

The Spinal Cord Injuries Australia (SCIA) Policy and Advocacy team is seeking amendments to the NSW Medical Energy Rebate so people with paraplegia who are required to use power wheelchairs due to medical or health reasons are eligible.

SCIA would also like the NSW Government to clarify if the uberX service will accept the TTSS vouchers (including interstate reciprocal vouchers) that provide fare subsidies.

Energy rebate expansion sought

POLICY & ADVOCACY

Drug lobbying continues

SCIA would also like the NSW Government to clarify if the uberX service will accept the TTSS vouchers... that provide fare subsidies.

OsmoLax is a medicine for constipation and bowel management that SCIA wants added to the Pharmaceutical Benefits Scheme (PBS) Paraplegic and Quadriplegic Program, which provides a limited type and quantity of bowel management products for free to eligible people.

SCIA made a submission to the Pharmaceutical Benefits Advisory Committee (PBAC) in February 2016.

OsmoLax is similar to Movicol. Movicol is available on the program, however, OsmoLax is preferred by Sydney’s Prince of Wales Hospital Spinal Injury Unit because its electrolyte burden is a lot less. This makes it very desirable for people over 50 years of age with blood pressure problems.

SCIA will report on the outcome in the next edition of accord. www.scia.org.au 19

POLICY & ADVOCACY

Squeaky Wheel

NDIS numbers climb again The quarterly report released by the National Disability Insurance Agency (NDIA) in December 2015 shows there are 25,875 participants eligible for the scheme across all sites—an increase of 2,915 on the previous quarter. Also, 22,281 people with disability had an approved National Disability Insurance Scheme (NDIS) plan, at a total cost of $1,521 million. Of those, the breakdown is as follows for the following jurisdictions: • • • • • • •

6,292 people are in NSW 5,348 people are in South Australia 1,065 people are in Tasmania 4,795 people are in Victoria 2,947 people are in the ACT 117 people are in the Northern Territory, and 1,717 people are in Western Australia.

According to the report, average package costs remains below the expected full scheme average of $38,600, with the average being $35,450—excluding large residential centres. Keep in mind that 70 per cent of participants have an annualised package of less than $30,000, accounting for 25 per cent of total costs. Meanwhile, 10 per cent of participants have an annualised package of more than $100,000, accounting for 50 per cent of committed funds.

The amount of money that has been allocated by support category is a good illustration of the areas in which participants are using their funding—depending, of course, on plan approvals.

The vast majority of funding has gone to “Assistance with daily life at home, in the community, education and at work (includes supported independent living)�, which represents a core support such as personal care. See the table (right) with information from the quarterly report.

The quarterly report also shows that with regard to the management of funding, plans are mostly agency managed (59 per cent), with 34 per cent using a combination of agency management and self-management and 7 per cent being selfmanaged. Autism and related disorders is the most common disability across all sites, representing 31 per cent of all participants and totalling 6,877; intellectual disability represents 3,303 participants; other neurological represents 1,805; and the figure for other physical disability is 889.

According to the report, 30,819 access requests have been made, with 25,435 people eligible for the scheme (83 per cent of access requests) and 1,974 people (6 per cent) ineligible (this drops to 5 per cent when age and residency ineligibility are excluded).

Only 179 (0.6 per cent) of these access request decisions have had internal reviews requested, the report adds. http://www.ndis.gov.au/about-us/information-publications-andreports/quarterly-reports

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Squeaky Wheel

Total $ Support Category 5,301,201 Assistance with daily life at home, in the community, education and at work 376,029,881 Assistance with daily life at home, in the community, education and at work (includes supported independent living) Assistive technology 24,432,403 Finding and keeping a job 8,481,408 Home modifications 4,466,505 Improved daily living skills 94,502,280 Improved health and wellbeing 4,884,092 Improved learning 669,603 Improved life choices 15,646,037 Improved living arrangements 456,379 Improved relationships 3,420,507 Increased social and community 8,303,080 participation Transport to access daily activities 17,004,913 Vehicle modifications 2,154,892 TOTAL $565,753,190 Information provided by the NDIA quarterly report, December 2015

Want more choice and control?

IT’S TIME TO

POLICY & ADVOCACY

Advocacy funding uncertain Spinal Cord Injuries Australia (SCIA) will continue to advocate for people with disability, their family and carers, despite the uncertain outlook for advocacy funding from the NSW Government.

SCIA attended a meeting in February 2016 with other NSW and federal government-funded advocacy organisations to discuss the possibility that the NSW Government will cease funding information and advocacy services when the National Disability Insurance Scheme (NDIS) is fully implemented.

The NSW Government is informing service providers about their advocacy funding arrangements within the next few months. It has been suggested that people with disability might need to include advocacy services under “coordination of support” or as part of “capacity building” supports in their NDIS plans.

In its submission to the National Disability Insurance Agency (NDIA) Framework for Information, Linkages and Capacity Building (ILC), SCIA said information, advocacy and peer support services were greatly needed and should continue to receive recurrent funding. As these types of services are only required on an as-needed basis, people with disability should not have to pay for them.

Informing, linking and building The National Disability Insurance Agency (NDIA) wants your feedback on the draft of the Information, Linkages and Capacity Building (ILC) Framework, which outlines how the NDIA will fund and manage ILC activities in the future.

The ILC budget will build up slowly over the next few years to approximately $132 million when full national rollout of the National Disability Insurance Scheme (NDIS) is complete in 2019–20. ILC funding will be distributed through an open competitive grants process.

Before the NDIA finishes the framework, people with disability, their families and carers and organisations that provide ILC-type activities are invited to provide feedback by attending a face-to-face consultation session or making a written submission. The following link provides further information: http://tinyurl.com/scia-consult SCIA will be submitting feedback on the Consultation Draft and attending the face-to-face consultations in Sydney.

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Problems gaining access?

Spinal Cord Injuries Australia’s (SCIA) individual advocacy service helps people to resolve issues that affect them personally and they may also involve partners, family members, carers and service providers. Issues may include Housing NSW applications, private and social accommodation, dealing with the Health Care Complaints Commission, access to premises and services and a host of other issues.

For more details on how SCIA can help you, freecall 1800 819 775. www.scia.org.au 21

REGIONAL ROUND UP

Illawarra reboots

Our regional people Spinal Cord Injuries Australia’s (SCIA) 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 Mel Gorman Illawarra/South Coast Suite B, Level 9, Crown Tower Wollongong Central, 200 Crown Street, Wollongong NSW 2500 T: 02 4225 1366 E: illawarra@scia.org.au

Mel Gorman, Illawarra

Thank you for the warm SCIA welcome to the Illawarra. I joined the team in January and have had a great time meeting various local organisations and members of the community. It was also exiting to see our services start up again in the region. We are offering peer support, social groups, events, education sessions, forums and advocacy.

To help get the ball rolling again and to determine some of the individual needs in the area, we held a focus group in the Wollongong office on 25 February. The group made it clear that SCIA’s services are needed, highlighting the opportunity these services provide to meet others and to share experiences. One major point noted by the group was the lack of information available about community accessibility. We are currently building a list of local accessible venues and restaurants to help overcome that situation. This will come in handy for the fortnightly Thursday social group.

Monthly weekend events are now on the social calendar and we encourage people with disability and their family and friends to come along. The first event was tenpin bowling at AMF Illawarra in March. It was a great afternoon of bowling and socialising. More events are planned, including a trip to Kembla Grange Races in May and lawn bowls in June with Wheelchair Sports NSW. We’d like to introduce more sports and other activities and welcome any suggestions. Let’s get out and explore this beautiful coastline we live on. If you have suggestions or would like more information, contact Mel Gorman on 1800 819 775.

Men's Shed makes a difference Noel Elliott, Spinal Cord Injuries Australia client, Illawarra

Bill Robinson (left) and Noel Elliott (right)

The new Men’s Shed Clubhouse at the IRT Woonona care facility in the Illawarra has been officially opened.

On arriving at the IRT Woonona care facility, I and the other male residents wished we could tinker with tools and wood etc, like we’d done in our former lives.

22 accord magazine

REGIONAL ROUND UP Evolving from a social group to a men’s group committee and now the new Men’s Shed Clubhouse, our wish has been granted.

In the clubhouse we can tinker as well as relax, talk, have a cup of coffee or tea, play cards, board games (such as Scrabble or draughts) or mahjong, or keep our woodworking skills alive by making small items of furniture and household aids.

NDIS is almost here

We officially opened the purpose-built clubhouse on 18 January.

IRT Woonona care facility constructed the shed on a 6m x 6m concrete slab funded from its 2014 budget.

The NDIS is a great step forward for many people who previously received little or no funding. But there are still questions about those who ‘slip through the net’ and, of course, those aged over 65 years. Interesting times ahead.

Our neighbours, the Bulli Woonona Men’s Shed, helped to set up the new shed, first by donating 20 chairs and five tables and then by completing the wall linings, electrical work and painting, and constructing the workbenches.

A local gentleman kindly provides us with small wooden items in kit form to sand, stain and assemble and then offer for sale to the IRT Woonona complex’s staff and the local community.

Our men’s group is pleased with the clubhouse and grateful that the IRT management saw our vision and fulfilled our need for a place to tinker or relax and enjoy our days with like-minded men friends.

Ray Munro

Glenda Hodges, New England

The National Disability Insurance Scheme (NDIS) is on our doorstep and expected to start in New England on 1 July.

The Physical Disability Council of NSW held a two-day NDIS workshop in Tamworth, in April, directed primarily at people with physical disabilities.

The workshop aimed to provide individuals and carers with a better understanding of the NDIS and how to plan and prepare for the NDIS. The workshop also explored aspirational planning and goal setting and provided an opportunity for attendees to sit with experienced planners and to start their plans.

For more details contact the New England office on (02) 6766 6422 or 0427 257 471.

New office shakes up Northern Rivers Lee Clark, Northern Rivers

SCIA’s move to Alstonville is proving to be a boon for building disability awareness. Moving to Shop 27, The Plaza, Alstonville, has made SCIA more visible and generated quite a lot of interest in the world of physical disability. Both the general public and those with a physical disability—who had no idea there was such an organisation available to help them—have been dropping in to find out what SCIA does.

To all our members, if you have any questions or queries about any matters affecting you, such as completing application forms, don’t hesitate to visit the new office. In the long run coming to the office may save you time, particularly in understanding application forms, etc.

Feel free to call me any time to make an appointment. Although the office is open most days, it’s best to plan ahead in case I’m out attending to other SCIA business or seeing clients in Coffs Harbour or Port Macquarie.

For more details contact the Northern Rivers office on (02) 6628 3409 or 0421 055 992.

We need you at Alstonville It would be great to have an extra pair of hands at SCIA’s new Alstonville office to help Lee Clark while she is in the office tending to the Northern Rivers region. If a couple of people in the Alstonville, Ballina or Lismore area are keen to do some volunteering, such as answering the phone and some other administration tasks, contact Lee on (02) 6628 3409 or 0421 055 992 to find out more. It’s a great opportunity to give back to your community.

Comfortable with continence Continence expert Lorraine Dickson's knowledge and friendly, open manner eased any fear and embarrassment held by attendees at the continence forum she facilitated in Tamworth earlier this year.

Lorraine is a Nurse Practitioner who has been educating people about and treating incontinence for more than 10 years for Hunter New England Health. She spoke about incontinence, health and wellbeing and facilitated easygoing conversation among participants, enabling people to ask a range of questions and share experiences about what can be a difficult topic to speak about publicly. People at the forum commented on how easy Lorraine was to talk to about issues they were experiencing and a few people went away with her contact details for future reference.

People with disability and their friends and family are encouraged to come along to the forums.

For more details on forums, social activities and anything else, contact the New England office on (02) 6766 6422 or 0427 257 471. www.scia.org.au 23

Helping improve clients’ quality of life

Hollister Advertorial

Sometimes introducing a new product or piece of equipment can enhance clients’ quality of life.

By Marian Weststrate, RN, BN, district nurse with Capital and Coast DHB, based on the Kapiti Coast, Wellington, New Zealand.

As nurses working with patients in the community and hospitals, we all come across situations where we see patients struggling to use some products or equipment. Nurses are known as problem solvers and, as such, we should not accept such situations, if there are affordable solutions which would make life easier for these patients.

In my work as a district nurse I have encountered patients trying to secure a urinary or wound drainage bag onto their leg in a way that ensures the bag doesn’t drag uncomfortably and isn’t visible. Elastic leg bag straps can cause pain or swelling to the legs or irritate the skin and this can require a nurse’s attention. I have seen swollen legs, blisters due to shear and pressure, and irritation, all caused by elastics straps. I have come across moist or dirty straps, possibly from urine or shower water. And I’ve seen straps not tight enough to prevent the urinary bag dropping down under the client’s clothing or dragging on the floor. To prevent this happening, I have seen safety-pins used to fasten the elastic leg-bag straps or many knots in the elastic straps to tighten them because the Velcro is not holding them together tightly enough. I’m sure other nurses have come across similar situations.

For many years there have been more comfortable alternatives on the market. Light-weight, stretchy leg-bag holders have an inner pocket designed to hold the leg bag and an opening at the bottom for the drainage tap.

It is like a sleeve which can be worn around the thigh or the calf and is available in various sizes. It is made from synthetic or natural stretchy material, which allows the bag to fill up. It evenly spreads the pressure and secures the drainage bag to the leg and prevents it from dragging down. It minimises direct contact between the leg bag and the patient’s skin. The leg-bag holders are machine and hand-washable and, therefore, reusable. Whenever we come across patients with newly inserted catheters, we offer them the sleeved leg-bag holders.

When we introduced the leg-bag holders to our community health service, the majority of patients were in favour of them. However, there was a small number of patients who were not able to use them.

One man with decreased mobility had difficulty bending over to open the drainage connection. With the elastic straps, he just pulled the bag up his leg. A wheelchair-bound lady preferred to have her urinary drainage bag attached to her wheelchair.

Hollister Leg Bag Holsters An alternative to Leg Bag Straps

I have been asked whether people with dementia could use these leg-bag holders. In my work, I have not come across many patients with cognitive decline who have catheters – most who are incontinent are using other products, such as pads. Those with catheters were receiving assistance from carers, who would be able to use the legbag holders.

I hope this article raises awareness of products that can help improve the quality of life for those of our clients who have catheters.

In the words of a grateful client . . .

“Hi Marian, I want thank you for introducing “leg-bag pocket socks” for Mum’s catheter drainage bag to us.

The leg-bag socks have made a difference. Prior to the leg-bag pocket sock, the bags were held in place with elastic straps. They tended to be uncomfortable and often failed to hold the catheter drainage bag up. To overcome this failure meant tightening the straps and as a consequence caused Mum’s leg to swell. To counter this, we alternated the leg which had the bag on. The straps also left marks on the skin. Now with the leg pocket socks, Mum does not have any of these issues. She finds the socks are comfortable, don’t fall down and don’t leave marks. Thanks again for that little something which makes life more pleasant.”

Leg Bag Holster Size

Stretch Potential

Box QTY

9612

Stock Code

Colour

Small

26-36 cm*

4

9613

Medium

36-48 cm*

4

9614

Large

48-62 cm*

4

© 2016 Hollister Incorporated. All rights reserved. Hollister and logo are trademarks of Hollister Incorporated. Reproduced with permission from Kai Tiaki Nursing New Zealand.

First published in November, 2015. Photos used are for illustrative purposes only. This article does not represent an explicit endorsement by the author. Abridged from original for space purposes. * Estimate only.

1800 219 179 www.hollister.com

REGIONAL ROUND UP CONT'D

An opportunity for additional income?

Craig Lees, Central West

Earning any sort of income can be difficult for individuals with a high-level spinal injury. For those from more isolated regional areas, the prospects for paid employment may seem insurmountable.

Being resourceful and alert to opportunities is a good way to think. If your only income is the Disability Support Pension, consider what you have to offer. Perhaps time? Are you capable of using a computer and the internet? If so, have you considered participating in paid online surveys?

Large companies want to know how their products are seen in the eyes of the average consumer. Businesses and researchers pay online survey companies to gather data for them. Managing online surveys is big business and the demand for participants is high.

The amount of money you can make doing paid surveys varies from company to company—and there are hundreds.

The website australiansurveysites.com.au ranks some of the more reputable survey sites out there. Be aware that a reputable company will never ask for up-front ‘fees’ under any circumstances. There are additional opportunities available, such as being sent new products to trial or participating in phone or face-to-face surveys. Rates for online surveys can

seem low at around $6 per hour, but consider you can earn this any time it suits you. Perhaps you’re on hold or watching ads on TV, for example—earning any money while performing those tasks is great.

Most of the survey sites pay out accrued survey points as a choice of rewards that include retail gift cards and vouchers (for example, Woolworths WISH Gift Card). Some sites also have the option of cash deposit via a PayPal account. The Australian Taxation Office does not consider such rewards as taxable income.

For information about what’s happening in the Central West, don’t hesitate to call (02) 6372 1892.

New views at the zoo Naz Erdem from AQA Victoria’s Spinal Injury Resource and Support Network (Spire)

An accessible viewing deck of the giraffe exhibit opened at Melbourne Zoo last year.

The new deck has ramps providing an opportunity to see the giraffes from a different perspective, says the Melbourne Zoo. “Whether it is pushers or wheelchairs or people who have difficulty with steps, we are keen to make sure that all our visitors have a great Zoo experience,” Melbourne Zoo Director Kevin Tanner says.

Supporting those with physical disabilities

“Good viewing leads to an increased feeling of connection with this magnificent wildlife, and we hope that our visitors will make powerful connections that will inspire them to join us as conservation advocates.”

Glenn Moore Units Tasmania

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Giraffe enclosure at the Melbourne Zoo

www.scia.org.au 25

INFORMATION AND RESOURCES Accessible Travel and Online Resources compiled by Martin Heng of Lonely Planet A new guide dedicated to accessible travel resources. To be updated biannually, it represents the world’s largest list of online resources for accessible travel. http://media.lonelyplanet.com/shop/media/accessible-travel-online-resources.pdf

DisAbility Fitness by Devon Palermo A resource guide about self-assessment, nutrition, program design and functional adaptive exercises.

It is designed to motivate, inspire and educate you and to increase your fitness and improve your overall health and wellbeing. www.disabilityfitnesshandbook.com

Quadalajara: The Utopia That Once Was by Jack Tumidajski The famous commune in Guadalajara, Mexico, of injured US war veterans was first created by a group of paralysed World War II and Korean War veterans in the 1950s as a way to become financially independent; the commune lasted for 30 years. Borrow it from the SCIA library or go to: www.amazon.com/Quadalajara-The-Utopia-That-Once/dp/1892451344

TravAbled.com A travel website for people with disabilities and their family and friends. You can search for accessible locations, make recommendations, add comments and ratings, post photos, interact with other users and mark accessible locations. http://www.travabled.com

Guide to Planning Bathrooms and Kitchens 2015 by the Independent Living Centre NSW This latest edition reviews circulation and access requirements, taking into account new sizes of wheelchairs, walkers and other mobility aids. Information for carers on facilitating bathroom access is also included. Borrow it from the SCIA library or go to: www.ilcnsw.asn.au/home/publications/publications#pub_bkGuide

I Still Run In My Dreams: A Physical and Spiritual Journey Through Quadriplegia

by David Moore After sustaining quadriplegia in a car accident and undergoing rehabilitation, the author realises that being happy is about having gratitude for what you have and knowing you are not alone with your pain. Borrow it from the SCIA library or go to: www.amazon.com/Still-Run-Dreams-Spiritual-Quadriplegia/dp/1523632267

Universal Design Tips: Lessons Learned from Two UD Homes by Ron Knecht and John Salmen This ebook shows how universal design can be used without making a home look like an institution and how ageing-in-place features can be incorporated into the overall look of a home. www.udconsultants.com/news-you-can-use/universal-design-tips

Paws, Noses & People: A History of Dogs for the Disabled and the Development of Assistance Dogs in the UK by Dick Lane Assistance dogs have helped many people, from those with autistic spectrum disorder through to those with tetraplegia. The book is based on the author’s own experience, interviews with users of assistance dogs and official records. Borrow from the SCIA library or go to: www.amazon.com/Paws-Noses-People-development-assistance/dp/1861514875 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 Services. SCIA can be contacted by phone on 1800 819 775, email information@scia.org.au, or visit scia.org.au/information-services 26 accord magazine

www.scia.org.au 27

TECHNOLOGY Graeme Smith, Ability Technology

Control TV through your iPad

Making icons bigger

I have an iPad and I’d like to be able to control my television with it. How can this be done? Will Apple TV provide this feature?

I’m considering buying a tablet computer such as an iPad but the icons seem to be quite small. Can they be enlarged?

This is not as simple as it sounds. First, the Apple TV will not give you access to freeto-air TV stations. Second, the iPad does not have infra-red output, so it needs to talk to another intermediate device (via Wi-Fi or Bluetooth) in order to control your TV. At the cheapest end of the spectrum, a device such as the BroadLink should be able to do the job. The iPad connects to it through Wi-Fi. If you want to expand your control of devices at home, and if you need to use a switch to control your iPad, then you could consider the HouseMate. The iPad connects to this via Bluetooth. It was previously internet, you may want to consider other available only for Android devices but an options, such as using a TV tuner (like iOS version has just been released.

EyeTV). These work best if you can plug There are some other options for iPad in a TV cable rather than rely on the small television control. One is to use the internet aerials provided. to connect to the main TV stations.

Finally, the simplest solution may be to Channels 7, 9, 10 and ABC 24 all have upgrade your television. Apps are available live internet versions. But be careful—we for the main brands of smart TVs, which recently checked the data usage for a greatly simplify the task of TV control one-hour TV show on an iPad and it was almost 1GB. So, unless you have unlimited through an iPad.

Mouth control for tablets I’ve been using a SmartNav to control my desktop computer and I wonder if I could use this or something similar for a tablet computer?

You could continue to use your SmartNav on a Windows tablet, but keep in mind that the movements required could be tricky on a smaller device. You can get larger Windows tablets, and some are “convertible”—they function as tablets or laptops. The SmartNav won’t work on other tablets however, as it requires software (Windows or Mac). Some other options are available on Android tablets.

A head-control device like the Quha Zono gyroscopic mouse can work on an Android tablet and may involve a similar movement to that you use already with the SmartNav. A mouth-controlled device (such as the QuadJoy, Jouse, Lipstick or IntegraMouse) could be considered.

Android devices have a USB port and a cursor appears on the screen when you connect a mouse device (including the 28 accord magazine

ones I just mentioned). Unfortunately, none of these devices will work on an iPad. There is no cursor at all in the iPad and no USB port.

Not on the iPad. Icons on the home screens on the iPad have a fixed size.

Windows 10 and Android tablets have options to change the icon size. One popular example for Android devices is called BIG Launcher.

iPhone hands-free I’d like to use Siri but I can’t hold down the home button on my iPhone very easily. Is there another way?

Hands-free Siri (“Hey Siri”) has been available since iOS 8. However, it only works if your iPhone is connected to power, which is not always the case. To turn it on, go to Settings/General/Siri/ Allow “Hey Siri”. If you have an iPhone 6s, you can activate Siri hands-free even if the phone is not connected to power.

Technology n

Creating your own voice

means

Independence

n

My brother has a degenerative condition and it’s likely he will lose his voice in the future. Is there some way of recording his voice and then using it to speak for him later through a speech device?

Productivity

n

Connection

Where do you start?

ModelTalker allows a person to create their own synthetic voice with their own accent, pitch, etc. It allows you to ‘bank’ your own voice (or the voice of a friend or relative). Some training is involved, but the synthetic voice can speak words beyond those trained.

ModelTalker is available for use with the Predictable speech app.

Read more about it here: https://therapy-box.co.uk/modeltalker.aspx

Ability Technology is in Northern and Western Sydney, Newcastle, Canberra, Brisbane, Melbourne and Adelaide.

Contact our team at info@ability.org.au

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www.scia.org.au 29

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

REVIEW

The Very Alternative Guide to Spinal Cord Injury Shirley Carpenter, Information Services Manager, Spinal Cord Injuries Australia

T

here’s a wealth of standard guides and resources on spinal cord injury out there, packed with useful and informative details about what you need to know to get on with life after a spinal cord injury—all essential to improving quality of life.

The Very Alternative Guide to Spinal Cord Injury

By Anthony Papathomas and Joe Robinson Published by The Very Alternative Guides, 2015 96 pages

But every now and then something comes along that’s a bit different.

The intention of The Very Alternative Guide to Spinal Cord Injury is not to provide a comprehensive directory or guide to spinal cord injury per se, but to gently encourage the recently injured person and even the long-time injured to challenge assumptions and beliefs they might hold about spinal cord injury. Incorporating lots of diagrams, photographs and even a game of snakes and ramps, this picture book for adults offers alternative ideas, perspectives, thoughts and attitudes to ponder, accompanied by a large dose of humour.

People might think using humour is a little disrespectful when talking about such a serious subject, but as the authors say in the introduction to the book, “We’ve noticed that spinal cord injured people often develop a slightly twisted sense of humour. Humour can cut through the fluffy stuff and help people to talk about taboos like toilets, sex and doctors sticking things where the sun does not shine.”

sadness, sex, pain, body functions and getting back to work. It even provides some helpful advice for the day when the spinal cord injured person ventures into the outside world to realise that, for some strange reason, being in a wheelchair will attract attention, people will offer ‘help’ when it’s not really needed and people will be amazed by things that wouldn’t have warranted a second look before the person was in a wheelchair.

“We’ve noticed that spinal cord injured people often develop a slightly twisted sense of humour.”

The Very Alternative Guide to Spinal Cord Injury doesn’t offer miracles or promises that life will be a bed of roses. It suggests there will be ups and downs, mundane everyday stuff to still deal with and steps forward and back, and that recovery and progress is a long, slow process that happens over time.

Written by a research psychologist and an artist and designer, with contributions from members of the spinal cord injured community throughout, the book speaks with sensitivity, authenticity and honesty about what people who have experienced a spinal cord injury will face along the way.

The beauty of this book is it doesn’t need to be read from cover to cover, at any particular time or just by the spinal cord injured person. Family, friends and anyone involved in working with people with spinal cord injury will find something of benefit. The first edition is available only in hard copy but for future editions the authors are investigating the option of producing an e-book version, so look out for that.

Starting with the newly injured, the book takes the reader on a journey through the many aspects of a spinal cord injury, such as the stages of emotion they will experience after an injury, thoughts and questions they might have about their future, dealing with boredom, fear,

The Very Alternative Guide to Spinal Cord Injury is available to buy from The Very Alternative Guides website veryalternativeguides.com/ordering If you’d like to have a look at the book before purchasing, the SCIA library has a copy that it can lend to members.

www.scia.org.au 31

LEGAL RIGHTS

Top four things to ask yourself when choosing a lawyer

Choosing the right lawyer is like choosing the right doctor—they need to fit your needs. Consider asking yourself the following questions.

Genevieve Henderson, Slater and Gordon Lawyers approach resonate with you or not? For example, is your potential lawyer pushing Dealing with the legal system can be for a dramatic courtroom battle when you complicated and daunting, so it’s important are keen to avoid litigation and settle out that the person who represents you is of court? someone you can trust. The best way to find What do you know about their out is to meet with your potential lawyer experience? and interview them. Are they someone you feel understands and listens to you?

Are you confident in your lawyer’s Do you feel comfortable asking questions ability to represent you in a knowledgeable, and sharing information with them? qualified and skilled way? Every lawyer has

Do you trust them?

Have they informed you of your rights and the legal process?

Your instincts can tell you a lot about a lawyer’s suitability to represent you, along with the advice they provide about your rights and the legal process. When you speak with them, does their advice and

32 accord magazine

directory for accredited specialists in the relevant law.

Are you comfortable with the cost structure?

Legal services can be expensive, but with a good lawyer you should have a general understanding of what your legal action will cost. Ask yourself: has your lawyer offered cost information in a clear and transparent way? Are the legal fees different skills and every person seeking appropriate to your circumstances? Most justice has different needs. The lawyer who importantly, avoid anyone who uses vague did your will might not be right for your billing practices. ■ major injury claim. You have to decide Genevieve Henderson is the Motor Vehicle what you need and if your lawyer will deliver. Do your due diligence. Seek advice Accident Compensation, NSW Practice Group from people who have had a similar issue. Leader at Slater and Gordon Lawyers.

Visit www.slatergordon.com.au Search the Law Society of NSW’s online

LIGHT and

STRONG

VERSATILE

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Request to trial a k端schall, made to order visit invacare.com.au or phone 1800 460 460 www.scia.org.au 33

CALENDAR

Events 2016 Social 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.

For further information or to RSVP for any of the below events, contact Rob Wynn: rwynn@scia.org.au or Heidz Haydon: hhaydon@scia.org.au or phone 1800 819 775.

MAY 28 May Vivid Dinner and Lights Cruise 5pm – 6:30pm (Meet at 4:30pm) t! d oua l o s Cost is $55 per person with t has carer/friend/ enprimary disability,s $55 v e i Th($69 relative additional adults / $50 children) More info: http://bit.ly/1m8avR7

JUNE 25 June Lunch at Putney Bowling Club 1pm | 68 Frances Rd, Putney NSW 2112 Menu details can be found at: putneybowlingclub.com.au/bistro.html

34 accord magazine

Industry MAY 30-31 May NDS Disability at Work Conference 2016, National Convention Centre, Canberra nds.org.au/events/1447211283

JUNE 8 June Advanced Negotiation Skills (for advocacy), Sydney CBD http://tinyurl.com/Adv-Neg-Skills

JULY 27-28 July Regional Support Worker Conference ‘At the NDIS Frontline’, Southern NSW nds.org.au/events/1450658867 27-29 July Australian Assistive Technology Conference, Jupiters Hotel & Casino, Gold Coast arata.org.au/conference2016

AUGUST 30-31 August Universal Design Conference, Sydney Town Hall, Sydney universaldesignconference.com.au

(◀ continued from page 7)

NOVEMBER 21-22 November Wound Management: A Practical Guide, Rydges Sydney Central, Surry Hills, Sydney http://tinyurl.com/zo2pye9 23-24 November Regional Support Worker Conference ‘At the NDIS Frontline’, Central Coast/Hunter, NSW nds.org.au/events/1450658867

DEC 1-3 December International Indigenous Allied Health Conference, Pullman Cairns International Hotel, Cairns, Queensland http://tinyurl.com/h27co7o

NEWS CONT’D

the age of 65 and are currently accessing a disability service, you will be provided with continuity of support consistent with current arrangements.” SCIA is seeking further details of how this will apply. If you are eligible to join the NDIS, you will receive funding on an annual basis to purchase the services, aids and equipment that you require and are agreed to in your plan.

One of the key things you need to do before having a planning meeting with the NDIA is to think about where you are at in your life now, what your current goals and aspirations are and the supports you need to meet these goals and aspirations.

This is no small step and will require deep thought and communication with important people in your life to work out the best way for you to move forward. You will also need to think about how you want to manage the supports in your approved plan. You can decide to fully manage everything (including the administration) yourself, or for the NDIA or a service provider to do this for you, or you can use a combination of these options.

SCIA can support you to prepare for the planning process in a number of ways: providing free written information and advice and support over the phone or face to face if possible. We may also be able to help you with a support person to attend the planning meeting if this is important to you.

Having said that, not everyone will receive a letter to take part in a planning meeting as soon as 1 July rolls around.

In the interim people eligible for the NDIS will remain on their current state or Commonwealth Government funding packages. But this is no time to put off your thoughts and early planning around your involvement in the NDIS. Now is the right time to review your government funding package to ensure you have all the funding you are eligible for, as this will be taken into consideration in the initial planning meetings with the NDIA.

The Autoslide promotes inclusion by giving people a greater level of self-sufficiency. It enhances an active lifestyle by making exit/entry effortless.

No more fumbling with doors or waiting for assistance, the Autoslide is your personal doorman.

Attaches to most existing sliding doors

For example: in NSW, are you eligible for the Family and Community Services (FACS) Community Support Program (CSP), Community Care Supports Program (CCSP), Community Participation, Life Choices and Active Ageing Program or any other funding programs? In other states, are you sure you have applied for funding that is currently available?

Also, do you receive direct payments to self-manage your supports or use an Intermediary or a Service Provider? SCIA has recently commenced supporting its members as an approved FACS Intermediary in NSW and is providing plan management, administrative support and advice services for people who have been allocated individual funding packages prior to entering the NDIS. You can contact us to discuss your options and if you would like support with managing your funding package.

SCIA is always keeping abreast of the latest state and NDIS developments and creating information to support you in managing the services you need. It is also a good idea to keep a close eye on the “Participants” section of the NDIS website www.ndis.gov.au/participants and the state government websites.

For more details on how SCIA can help you get ready for and transition to the NDIS, check out the SCIA website or contact us on 1800 819 775 or office@scia.org.au. www.scia.org.au 35

SOCIAL MEDIA

We are thrilled to announce that Permobil Australia has become SCIA’s newest corporate partner. We look forward to working with them to reduce social isolation and promote independence for people with an SCI through a program of social events and activities both in the community and in the spinal units of NSW. Read about the partnership here: http://bit.ly/21jIt4o

We’re honoured that Alex McKinnon has come on-board as an ambassador for the Big Day Off, raising funds for Spinal Cord Injuries Australia and SpinalCure Australia!

Check Alex out on the Today Show Australia launching this fun, easy and unique fundraiser. #‎BigDayOff #‎NominateYourBoss

This year the SCIA Independence Expo is bigger and better than ever before! There will be an arts exhibition and crafts market to enjoy featuring local Sydney artist Susan Wood

Thank you to the Waratahs for giving our members tickets to see them take on the Highlanders. It was an exciting match and the Waratahs fought back valiantly in the second half but unfortunately couldn’t get the win.

Over all a great night was had by all and we look forward to the next match!

facebook.com/spinalcordinjuriesaustralia

linkedin/company/spinal-cord-injuries-australia

youtube.com/spinalcordinjuriesau

twitter.com/SCIAust

A free telephone information service for elders, people with disability, their families, carers and other supporters.

Ask us the questions, we give you the answers and you make the decisions.

To ask in your language call the Translating and Interpreting Service on 131 450 and have them contact IDEAS on 02 6947 3377 between 9am and 5pm.

SERIES2

available at

www.permobil.com.au info.au@permobil.com

SAVE THE DATES SYDNEY

17-18

MAY 2017

BRISBANE

24

MAY 2017 On display will be the latest in aids, equipment and assistive technology, as well as options for mobility, services and lifestyles. The Independent Living Expo is an event that welcomes all those involved in ensuring better outcomes for people with disability of all ages. The Expo is of interest for everyone, whether a consumer, care giver, allied health practitioner, equipment funder or support organisation.

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

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