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CONTENTS 02 03 04 08 10

From the CEO From the President News Fundraising Naturally accessible: inclusive bushwalking & bushwheeling

14 C hanging society’s perceptions one person at a time 16 What’s your tiger fish?

18 Daily living 20 NDIS profile 22 Policy and advocacy

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Regional round up Technology Information & resources Review: Front Up Arts program Calendar

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

Sub Editors Rosemary Gillespie Glynis Skepper

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

Designer Shauna Milani Advertising accordadvertising@scia.org.au

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

FROM THE CEO

Growth FOR GOOD I

n June 2016, SCIA had 946 members. As I write now in June 2018, we have 1,863.

That’s an almost 100% increase in just two years, and each month we continue to welcome around 50 further new members.

What has driven this increase? SCIA has always been a member-based organisation, and everything we do has always been focused on serving their interests. This philosophy is summed up in the term, “We can help you with that”, which is the driving force behind all our activities, each and every day. We take the time to understand our members, and genuinely assist them to achieve their goals.

The poor culture that has been creeping into some of our largest organisations for many years now – as shown by the revelations from the Banking Royal Commission, and numerous other recent examples of poor corporate behaviour – has been something that I have personally been dismayed by.

It seems our world is more and more driven by the need to grow at any cost. As if we haven’t grown enough already, when there are more people alive today than have ever lived on this planet. If we pursue growth purely for growth’s sake, where will it end up? Having previously worked in the corporate world for more than 30 years, I understand that the growth imperative is inseparable from corporate life. Phrases such as, “If you’re not growing you’ll be left behind” are commonplace.

I have been disappointed to read the plans for organisations similar to SCIA in recent years, many of which talk about growth as their main objective. I always ask myself, “Growth for what purpose?” Is the growth for the ego of the CEO and senior managers, or is it just an assumption that bigger is better by definition? (In my experience, that’s clearly not the case.)

In many instances in corporate Australia, the growth that has been relentlessly pursued has left their customers behind –

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and often, their staff as well. People, whether customers, staff members, or others, seem to be only useful to some organisations if they can contribute to the “god” of growth. I have always had the attitude during my time at SCIA that while growth is a good thing, if that means we can provide advice and assistance to more people in need, it’s not a goal to be pursued just for its own sake.

So, having started this article talking about how much SCIA’s membership has grown, you might be wondering why I am saying that growth is not necessarily a good thing?

I think the answer to that conundrum is this: if an organisation is growing at all costs, without worrying too much about their customers, their staff, their reputation, and their culture, then that is bad growth.

Good growth occurs when a culture and reputation are created that people want to be a part of; they’re not tricked into joining up by special discounts or misleading statements. If they can see that they’re being offered a worthwhile solution to the issues they face, by an organisation with a strong reputation and culture, who can be trusted, and who is there for them rather than putting the organisation’s needs first, then people will want to be part of that.

That’s the reason why SCIA’s membership has doubled in the last two years – even if we’re not that fussed about growth! ▪

FROM THE PRESIDENT

Accommodating SPINAL CORD INJURY I

recently had cause to be completing a the end of rehab, is beneficial for survey when I came across this question: all concerned.

“Have you had experience in leading large The success of SCIA’s CHOICES scale organisational change?” apartment, located in Sydney’s Little Bay, I pondered for a minute. Hmm…no… has been well received and is soon to be perhaps not? It then occurred to my replicated in Perth. Some very generous cynical side: What do you call putting your funding has been offered by the West life back together after a spinal cord injury Australian Lotteries Commission and (SCI) if it isn’t “large scale organisational other philanthropic sources so the search change”? Life post-SCI can be good, but it has begun for a suitable property. Stay will never be the same as it was and most tuned West Australian members! people need help getting there.

But, oh the irony! Due to unforeseen Perhaps one of the biggest hurdles is circumstances, funding has become learning to live in a world that isn’t designed problematic for our Little Bay apartment for you. Suddenly, you’re three foot shorter as a benefactor has unexpectedly pulled and perhaps twice as wide. Counters are too out. The board at SCIA has opted to dip high and doorways are too narrow. There into resources to maintain the service for are steps that you never noticed before a time but we’re now on a serious funding and escalators aren’t much help. Catching drive for long-term prospects. a bus or a train, or even driving your car, Such is life sometimes in a for-purpose suddenly becomes an issue. organisation. We’re exploring other The safe confines of home may not be options, and we welcome any ideas, via much better. You thought there was heaps info@scia.org.au ▪ of space in the bedroom until you tried turning your wheelchair around. The bathroom and the kitchen no longer work for you and even opening and closing the front door presents a problem. That slope on the driveway didn’t bother you before but now it’s insurmountable.

Relationships are different. Even the dog treats you differently when he realises you’re not going to be out running with him anytime soon.

SCIA has set up our CHOICES apartment to help those leading their own large-scale organisational change after an SCI. When it gets close to that time in rehab, when there’s talk of you being let loose on the world in your new wheels, it’s our practice apartment. It’s our safe house between rehab and home.

CHOICES is an opportunity to practise your new life with family and friends.

What works? What doesn’t work?

Experiencing living in the community with an SCI, for a few days to a week near www.scia.org.au 3

NEWS

More Australians get support for first time under the NDIS

ISCoS is coming back to Sydney

New figures released in May show that one • 72% of participants aged 25 quarter of the 160,000 Australians now and over reporting the NDIS with the National Disability Insurance had helped them with daily Scheme (NDIS) are receiving support for living activities. the first time.

National Disability Insurance The latest NDIS Quarterly Report Agency (NDIA) Chief Executive (December 2017 to March 2018) showed Officer, Rob De Luca, said, “These that nearly 45,000 Australians had received strong outcomes demonstrate the State, Territory or Commonwealth support NDIS is already delivering on its goal prior to entering the scheme. to increase Australians with a disability independence and participation in The report includes survey results showing the NDIS is positively changing the community.”

After 18 years, the International Spinal Cord Society (ISCoS) is heading to Sydney for their 57th Annual Scientific Meeting (ASM) from 13-15 September.

people’s lives, with:

• 9 0% of parents or carers of children aged between 0 and six reporting the NDIS has helped with their child’s development and access to school services; and

While the NDIS national rollout is on track to be completed by 2020, the NDIA reiterates its commitment to getting the balance right between participant intake, the quality of plans and the sustainability of the scheme.

This year, they will be combining with the 25th meeting of the Australia and New Zealand Spinal Cord Society (ANZCoS) at the International Convention Centre, Sydney.

There will be an opportunity to mingle with world leaders in the field of research and rehabilitation for spinal cord injury, and to share knowledge and technology that leads to evidence-based best practice, standardisation and innovation.

Register at http://iscosmeetings2018.org

icare NSW invests $5 million into employment solutions The icare Foundation recently announced a $5 million investment in its new initiative, WorkUp. The program invites organisations to submit ideas aimed at helping injured workers stay in, or get back into, the workforce.

an employment solution to help get people who are injured and those with a disability back to work, and more essentially, back into their community.

Successful applicants will receive ongoing funding to implement their plans.

WorkUp will select a range of organisations to partner with based on their submission ideas and provide social impact specialists along with icare’s data and insights to co-design

WorkUp will also act as a forum for those who feel strongly about innovation, opportunity and accessibility to explore, share, challenge and codesign the initiative.

CEO Peter Perry announces his retirement from SCIA Peter Perry, CEO of Spinal Cord Injuries Australia (SCIA), has announced his impending retirement at the end of 2018 after ten years with the organisation.

During his time as CEO, SCIA has expanded to become a national entity, representing people with spinal cord injuries and, more recently, those with other physical disabilities and impairments.

“Whilst at the helm, Peter has guided SCIA through the transition to the NDIS environment, using his experience in financial and change management and strategy,” said Chairman Mark McCauley.

“He has successfully overseen and fostered the growth of our exercise programs 4

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under NeuroMoves; and also guided the organisation to be a formidable advocate for our members dealing with the NDIA and other community issues. We are very thankful for the energy and skill Peter has brought to the role.”

Peter leaves the organisation with robust strategies in place for SCIA to continue to achieve future success and sustainability in today’s ever changing environment, in order to deliver relevant services and meet the needs of members and clients.

SCIA President Christine Tink said, “The Board is actively working to identify a suitable successor and smooth transition, to ensure that the work done by Peter and SCIA continues unabated.”

NEWS

SCIA working to plug the gaps

NeuroMoves gets great exposure at ATSA NeuroMoves, Spinal Cord Injuries Australia’s acclaimed exercise service, recently exhibited at the increasingly popular ATSA Independent Living Expo in Melbourne and, for the very first time, in Perth.

Held at venues across Australia in May, the Expo was a great opportunity for people to stop by, speak directly to our NeuroMoves teams and get to know more about our wide range of exercise services.

NeuroMoves’ Melbourne team leader Jess Hansson gave a great presentation on the first day of the Melbourne Expo, speaking to a mix of allied health professionals and parents of individuals with a neurologic disorder.

Her talk covered dose dependency of Activity Based Therapy (ABT) on independence, mobility, sitting balance and active shoulder range of motion.

ABT is one of the many programs NeuroMoves offers. It’s a set of intensive, repetitive whole-body exercises which build muscle and help our clients reach their body’s maximum potential.

The Expo attracted a huge mix of visitors, including those in the industry, people with disabilities, carers and family members. We were really excited to meet so many enthusiastic people and look forward to seeing more faces at our NeuroMoves sites.

Supported housing report to be released Earlier this year, the NSW Government conducted a public consultation regarding residents’ rights in group housing.

Contributions received are currently being reviewed and will play a key part in informing the government of the options available to improve resident protection for people with a disability living in supported accommodation.

The report and additional updates will be published at https://www.facs.nsw.gov.au/about/reforms/future-directions/ resident-rights-consultation.

The Federal Government committed to ongoing NDIS funding when the federal budget was announced in May. However, prior to this, it had scrapped its policy to raise the Medicare levy from 2% to 2.5%.

The levy – which would have cost the average wage earner an extra $375 in tax each year – would have raised $8 billion over four years to plug any shortfall in NDIS funding. The government now argues that this is no longer necessary, stating that the money will be found elsewhere. This has raised concerns in the disability community regarding the government’s ongoing commitment to the NDIS as the levy would have guaranteed funding. Given the chequered history of government commitments, disability funding should not be subject to the whims of the government of the day.

In other news, SCIA has been working hard to resolve issues across the disability/health interface which are leaving some NDIS participants without adequate nursing support for such services as catheter changes. There has been confusion and inconsistency in how the NDIS views this support, with the NDIA stating that it’s a chronic health issue. However, in representations made to New South Wales Health by SCIA Policy &Advocacy, they very much agree that this is a support that should be provided by the NDIS. This is creating service gaps. However, work is underway to resolve these issues as soon as possible with SCIA working with NSW Health and the NDIA so that participants are not left without access to important services.

www.scia.org.au 5

NEWS

Taxi Transport Subsidy Scheme going digital

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really positive right from the start, the company was also able to gain insight into how the app could provide even more value.

company called SwiftFare is working to improve the Taxi Transport Subsidy Scheme (TTSS) by replacing paper dockets with a digital alternative. A trial of this technology is being rolled out in NSW, starting with Shoalhaven in late June.

“We learnt that for passengers who have trouble accessing their wallet, just paying for their half of the fare can be really difficult. As a result, we added a feature to allow people to optionally enter their payment details once, and then approve the subsidy and pay with the tap of a button,” he said.

TTSS provides passengers with half price taxi travel, but requires a paper docket to be filled out at the end of each trip. In contrast, SwiftFare’s digital alternative requires just a single button press on a passenger’s smartphone. For those without a smartphone, a smart card alternative is available, which passengers simply tap at journey’s end.

The team behind SwiftFare have previous experience developing mobile applications for people with disability. Their Metarove is the first real-time trip planner that could ensure a passenger’s entire journey was accessible, including making sure that the path to the station, the station itself, and the vehicle are all accessible.

In early 2017, the NSW Government’s Department of Finance, Services and Innovation, in conjunction with Transport for NSW, ran a competition seeking ideas to make cities more accessible. SwiftFare entered its idea of digitising TTSS and, after a highly competitive process, was announced as one of the winners. Each winner received funding to help implement their ideas, as well as training and access to the relevant people to help make

A trial of SwiftFare is being run in NSW with the support of Transport for NSW, with the app being rolled out in several different regions across the state.

The SwiftFare booking screen.

those ideas a reality. Training came in the form of a 10-week accelerator program focusing on all aspects of building a business and bringing a product successfully to market.

The development of SwiftFare started in July 2017, with the first version available in private beta in August that year.

Martin Smyrk, co-founder of SwiftFare, said that while the feedback was all

The first region to benefit from SwiftFare will be the Shoalhaven area, allowing passengers to use SwiftFare in any taxi in Ulladulla or Nowra from late June. This will also be the first trial of SwiftFare’s smart card technology, ideal for those passengers without a smartphone. Other regions being looked at for the trial include Illawarra, Central Coast, and St George.

For passengers not in these regions SwiftFare is still available, so long as the passenger has a regular driver, such as the driver they use to get to work each day. Provided both driver and passenger have SwiftFare installed, it can be used in this way anywhere in NSW. This version of SwiftFare is available now for both iPhones and Androids. ■

Read more news and share your own stories with us here:

FACEBOOK /spinalcordinjuriesaustralia

Connect with SCIA

TWITTER @sciaust INSTAGRAM spinalcordinjuriesaustralia YOUTUBE /spinalcordinjuriesau LINKED IN /company/spinal-cord-injuries-australia

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FUNDRAISING

Join the Big Day Back International Spinal Cord Injury Awareness Day is on 5 September and promotes inclusion and disability awareness across the globe. Join Spinal Cord Injuries Australia (SCIA) in backing people with spinal cord injuries (SCI) by organising a fundraising activity at work, at school or in your community.

It couldn’t be easier! Visit bigdayback.org and 1) Choose an activity that looks like fun (or make up your own) 2) Sign up 3) Spread the word and raise funds 4) Back people with SCI There are lots of great ideas to choose from. You could • “Bring back” home-made food – organise a breakfast, cake sale or lunch • “Go back, go retro” – dig out some flares and go back to the 70s for the day • “Have each other’s backs” – use this day to perform a random act of kindness for another person and ask them to donate what they think it’s worth.

Why join the Big Day Back?

Getting involved means you’ll be helping us raise $160,000 to purchase six body weight support harnesses for NeuroMoves gyms across the country. NeuroMoves is SCIA’s fantastic exercise rehabilitation service and we’re in desperate need of extra equipment so we can continue to push the boundaries and help people achieve their goals. These harnesses mean giving someone the freedom of being up and out of their chair. Used with a treadmill, walking is recreated with the aim of re-engaging some nerve activity and improving balance, posture and endurance.

You can help make this a reality!

For further information visit bigdayback.org or call 1800 819 775

Trusts and Foundations We’re excited to announce that SCIA’s CHOICES accommodation will soon be available in Perth, Western Australia.

CHOICES provides those with a newly acquired spinal cord injury (SCI) and their families access to temporary, fully accessible accommodation before they return home from hospital or rehabilitation.

Our goal of establishing Perth CHOICES has been made possible by grants of $750,000 from Lotterywest, $250,000 from the McCusker Charitable Foundation, and $250,000 from the Stan Perron Charitable Trust. Their generous support will see this important service become a reality for people with SCI 8

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living in Western Australia.

We were also thrilled to receive $397,500 through the ILC National Readiness: Information, Linkages and Referrals grant under the National Disability Insurance Scheme. SCIA will use this funding to build a digital forum connecting people living with an SCI, and their families and friends, by providing increased access and participation with the wider community.

The digital platform aims to help build the skills, knowledge and confidence of people with an SCI to participate in a greater range of community activities and mainstream services.

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5 september your

International Spinal Cord Injury Awareness Day is 5 September 2018 which promotes inclusion and disability awareness across the globe.

Join Spinal Cord Injuries Australia in backing people with spinal cord injuries by organising a fundraising activity at your work, school or in your community to raise money and awareness. how it works:

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have someone’s back

COVER

accessible T

he concept of being at one with nature is as old as humanity. Every culture across time has its own stories and examples of rejuvenating the soul or even connecting with the spiritual, through the medium of the natural world.

There’s also a plethora of recent evidence that spending time in nature is good for our physical, mental, social and emotional health.

Researchers in Japan and South Korea have built a body of scientific literature on the health benefits of spending time in nature, in particular the forest canopy. In Japan the term “shinrin-yoku” means "taking in the forest atmosphere" or "forest bathing” and the practice is now integrated into some preventative health care and healing approaches. The idea is that calming, rejuvenating and restorative benefits can be achieved if a person simply visits a natural area and walks in a relaxed way.

Australia is tailor-made for one of nature’s great experiences: bushwalking. And, of course, the notion is inherent to indigenous Australian cultures and belief systems.

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COVER Most of us have experienced the sheer thrill of natural beauty, flora and fauna, wide open skies, sunlight and fresh air that the natural world in our own figurative backyard holds; which is all good for regeneration of the soul.

There are many opportunities for bushwalking close to major population centres. The problem for people with mobility issues is the lack of relevant track information on which to make an informed decision.

Track information Currently the Australian Walking Track Grading System defines wheelchair accessible bushwalks very narrowly; they must have flat, smooth surfaces, be a maximum of 5kms in length and suitable to a user who requires no previous experience.

The tracks are treated in the same way as urban access criteria – not really helpful if you want to immerse yourself in nature for a day, or camp overnight with friends or family.

Thankfully, the National Parks Association NSW realised the problem and set about tackling it through its Naturally Accessible program. Matt McClelland from Naturally Accessible says, “We quickly realised the current approach to accessible bushwalking was outdated. We needed a new way, that enables people to make informed decisions about their capabilities.”

Matt has walked the 300 or so bush walks in the greater Sydney basin and notes that there are many tracks in NSW alone that are naturally accessible to many people with disability – by the lay of the land, the grade of the track and more. Yet the reason so few people use these tracks is that there is simply no relevant information about them available, anywhere. Matt’s vision is to see more people with mobility restrictions spending time outdoors. He wants to get to a point where no-one gives a second thought to seeing a person using a wheelchair going bushwheeling. In the process it may shake up the public’s perception of accessibility – and there’s absolutely no harm in that.

As with any outdoors adventure, information on bushwalking track conditions and facilities is critical to help people decide whether the track is suitable for their abilities. Information is a relatively cheap and effective way of improving access and empowers people to choose what is right for them, given their personal sense of adventure.

Unfortunately, current track grading systems effectively disregard a person’s inherent abilities and adventurous spirit. The existing disability signage essentially says the track is a) short and b) very easy.

If you’re looking for somewhere to wheel in for an overnight camping trip under the stars, you’ll need to be more adventurous.

Key to this is land managers reducing barriers of entry in a way that provides the least restrictive alternative for as many users as possible. The less restrictive the options, the more inclusive the tracks will be. The first stage is to document the track information, with a more inclusive mindset. In doing so, it highlights potential upgrades, such as replacing a step with a ramp.

Trialling the trails Matt Smith and his wife Helen, a manual wheelchair user, from Naturally Accessible set about trialing a few overnight walks with different groups of people with varying abilities. The vision at this stage is to find, research and promote around six inclusive overnight walks and up to 100 day walks.

To date the trials to Shelly Beach campground, in Myall Lakes National Park, have proved extremely valuable learning. It’s a 10km trip each way, and the team have documented track conditions and experiences for people using manual wheelchairs and adaptive equipment, including freewheels, and a Batec power assist device, with consideration given to hand cycle use too. www.scia.org.au

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COVER ◀ continued from page 11

There has been much learning, covering every aspect of the experience. Following is a snapshot: • 1 0km was found to be quite a long distance for manual wheelchair users to push, without prior training on similar surfaces. It’s highly recommended to build up to this sort of distance beforehand, not least because it gives an opportunity to assess hand/arm/shoulder strength and hydration needs.

• I t’s absolutely essential to test gear in trial situations - the freewheel takes a bit of getting used to, requiring practice to get comfortable.

• R emember to think of battery life if using power assist technology.

• I t’s useful to prepare for assistive techniques like roping up for “huskying”.

• I t’s a good idea to trial carrying extra weight (tent, sleeping bag, food and cooking equipment, water) as this can alter your normal balance or sitting position in your chair. An under-cargo net significantly increases the amount of gear that can be carried. The extra weight can add to stability but adds to the weight of the chair to be propelled.

• Don’t take food you haven’t eaten before.

• Practice getting into and out of a sleeping bag.

The list goes on!

For the trip to Shelly Beach, a temporary ramp had to be installed to access the toilet building.

Toileting, including catheterisation, can be done in discreet places on track behind trees and bushes; though note that this requires getting off the track, probably onto less even ground. In line with “Leave no Trace” principles, there are no rubbish bins in the toilets, so all rubbish (other than toilet paper) must be carried out. Both toilets have rail supports.

Shelly Beach is a great place to swim, with access right to the water. The lake is fairly shallow (1m depth) for about 20m out from shore. If you plan to swim, consider thinking ahead about how you can easily get changed after swimming without creating additional skin issues from a floor transfer from a sandy base.

Pitching tents was easily undertaken but practising floor to chair transfers is necessary. If staying overnight, ensure your seat cushion goes into the tent as rain or condensation will make the chair wet.

When setting up the campfire, consider firewood collection well in advance. If possible, raise up the stove. This allows easier working space to add wood and cook on the fire.

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What’s next Two overnight trials have been undertaken to date and a documentation system for inclusiveinformative track notes has been developed.

Highly popular live webinars have been a great success and are a terrific way to share experiences and answer the many questions from participants.

Land managers at Councils have also been extremely receptive and encouraging, so we look forward to their support as we push for even greater accessibility and inclusivity for all track users.

If you’re keen to find out more, a wealth of personal experience and useful information is available at two popular websites: bushwalking101. org and wildwalks.com Naturally Accessible is currently seeking more funding to document more tracks and will bring you details as they become available. ■

IN PROFILE

Changing society's perceptions, one person at a time.

by Susan Wood

Paul Nunnari sustained complete paraplegia at the tender age of just 11. Whilst recovering in hospital he saw a poster for the 1984 Paralympics which resonated with him so much that it set the course for the rest of his life.

Paul Nunnari

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IN PROFILE athletes. “I’m lucky that I had sponsors to come on board and help me form the relationships I enjoyed with those in the business world and with different people outside sport.”

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eflecting on the time of his accident, Paul Nunnari remembers seeing it as an opportunity to use his wheelchair as an alternative way to self-express.

After his Paralympic career ended, Paul continued to pursue unconventional ways to accelerate people with disabilities into the spotlight. In 2013, he performed his aerial act, The Other Superman, on reality television series Australia’s Got Talent.

“I used that performance as a launching pad to change perceptions again,” he says.

Paul sustained his spinal cord injury when he was hit by a van after getting off the school bus.

During what would have been an extremely daunting time for a person of any age, Paul recalls that he always remained optimistic.

“Once I was told I would be in a wheelchair, the first thing I wanted to do was to learn how to do wheelies and chase the nurses!”

Replaying Paul’s amazing act today, it seems like his decision to participate in the talent show meant that, not only was he representing his own disability, but millions of others with a disability as well. “It was quite challenging for the judges to get out of the mindset of judging in sympathy,” he believes. “But the further I advanced in the competition, the more I felt like their feedback was genuine.”

Despite the greater number of opportunities that people with disabilities enjoy today, Paul believes that he had better one-to-one support in hospital and a better transition to home life.

“As an 11-year-old, you just want to be a kid and you didn’t know what to expect,” says Paul.

Today, when he meets people in the community who remember his performance, Paul says they tend to recall the uniqueness of his act rather than his disability. In a way, his wheelchair helped people remember what he did as being something completely different.

Returning to school, he couldn’t stop thinking about the man in the poster at the hospital. “I didn’t see any disability about him. I just saw an amazing physical capacity and athleticism to really change perceptions.”

He’s very passionate about the portrayal of disability in film and media and says the success of entering Australia’s Got Talent has opened up other opportunities for people with disabilities to take part in similar programs.

That one image gave Paul an instant aspiration to continue to keep active and social through sport. “Once I returned to school, it was completely obvious that I was in a chair,” he says. “I soon discovered wheelchair basketball and it gave me clarity about what I wanted to do; it became part of my identity.”

Watching singers and performance artists with disabilities follow his lead, Paul says that it’s all part of breaking down barriers and putting everyone on a level playing field. “It’s important that society really showcases the talent above the disability.”

In 1985, Paul started training for the Paralympics. He made it to his first junior national event the following year. “I knew at that point that I loved the sport.” As he raced through high school he was granted a scholarship with the Australian Institute of Sport (AIS) in Canberra and, alongside former Australian Paralympian Louise Sauvage, he was one of the first athletes with a disability to attend their scholarships program.

Paul believes a greater emphasis on awareness starts with featuring actors with real disabilities in film and television in roles where their disability isn’t central to the plotline. Equally, champions for people with disabilities at senior level in top companies will help change perceptions in a positive way. “More opportunities to showcase people with disabilities is important,” says Paul. “There is a real feeling of discontent for those who want to pursue greater things, but for one reason or another have been held back.”

Paul maintains that the Sydney 2000 Summer Paralympic Games was a true highlight for him.

Not just because he was on his home turf, but because he came away with a silver medal in the Men’s 4 x 100 relay. However, Paul laments that there’s an obvious inequality when it comes to funding between Olympic and Paralympic peers and between established and up and coming

Much like the 11-year-old Paul who saw that poster all those years ago, the importance of generations to come perceiving disability as positive rather than negative will help pave the way for a more inclusive future, he concludes.

“Kids resonate with any kind of disability. It’s about what you project. If it’s positive, energetic and kick butt, then people will follow suit.” ■ www.scia.org.au

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IN PROFILE

James Gribble at Jacks Point, Queenstown.

What's your tiger

by Susan Wood

When James Gribble founded Empower Golf in 2014, he was on a mission to promote golf as a sport for people of all abilities. In just four years, he has turned Empower Golf into a thriving organisation with 13 inclusive golf hubs at golf courses across Australia. Now, James is returning to the place where his life changed forever in his new documentary Tiger Fish.

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IN PROFILE

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“ lose your eyes for a second and imagine all you can see is a thatched roof. All you can feel is your face; from your head down, everything else is completely numb.”

When James arrived, aged 29, in Jungle Junction, a tropical island on the Zambezi River in Zambia, he had only adventure on his mind. He had travelled to the island for one reason: to catch the elusive tiger fish.

Just 20 minutes after arriving, James collapsed from dehydration. He fell off a bar stool and landed on hard sand. The next thing he remembers was looking up at the thatched roof of the bar before being whisked away in a helicopter. In what seemed like a small mishap, James had damaged his spinal cord and sustained quadriplegia.

sport, and particularly golf, can be to enhance an individual’s wellbeing.”

Empower Golf runs Come and Try Golf Clinics that are free and open to people with all physical and intellectual disabilities. Each clinic lasts one to three hours and is facilitated by an accredited golf professional. Clinic attendees with mobility issues are given the chance to try out the ParaGolfer, a German-engineered all-terrain wheelchair that raises the user into a standing position to allow for a more conventional golf swing. It also helps users manoeuvre around the golf course with ease.

Even during his years in rehabilitation and leading Empower Golf however, the thought of returning to the place where his life changed forever was never far from James’ thoughts.

Prognosis upon sustaining his injury was bleak.

James was told he would never be able to feed himself again, let alone walk.

“A large part of me wanted to return to Zambia, just to see how beautiful the place really is,” he said.

“I vividly imagined it thousands of times over.”

He quickly decided that he wasn’t going to accept this outcome. “In the early hours of the morning, while still in intensive care, I was planning my recovery,” he said.

Encouraged by one of his oldest friends, Nicole, to share the experience, James decided to make a documentary about his return to Zambia nine years after sustaining his injury.

Before his injury, James was a passionate golfer who had played on courses all around the world.

His determination to regain his mobility and get back to the game he loved inspired him to start Empower Golf. It was his opportunity to promote golf to people of all abilities and enhance their physical and mental health, all while raising awareness of disability in sport.

Aptly named Tiger Fish, the documentary is an honest and inspirational account of his accident, rehabilitation, relationships, and struggles.

Empower Golf has since established golf hubs at golf courses in New South Wales, Victoria,

r fish?

Queensland, and Western Australia. James now proudly leads a team of five, four of whom have various disabilities. In 2017, they organised and ran 350 golf clinics for over 3,000 participants.

They have also helped organise the first two fully accessible golfing tournaments in Australia for people with disability.

“We have facilitated a significant shift in the mentality of the golf industry,” said James. “We have been lucky to experience firsthand how powerful

In the documentary, his concerns are imagined over and over as he prepares for the journey. Will it be cathartic? Will it be painful? Will the experience cause a Pandora’s box of grief to flood out?

As James makes his way back to Jungle Junction, and attempts once again to catch the rare tiger fish, the documentary captures perfectly how challenging travel logistics can be – as he is manhandled onto small aircraft, dugout canoes, and over sand, rocks, and gravel.

For James, the incredibly pristine and idyllic locations, coupled with the support of the Zambian locals, made the trip unforgettable. “The people, with their strong sense of camaraderie, gave me the opportunity to take part in so many activities.”

James and Nicole are now raising money to help finish the film. By sharing James’ raw and moving story, they hope Tiger Fish will educate, inspire, and more importantly help change the lives of other people facing hardships and challenges.

“If we can help one person, it will be worth it.” ■

www.scia.org.au

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DAILY LIVING

Preventing pressure injuries: What you and your carer should know P

ressure injuries, also known as pressure sores, pressure ulcers and bed sores, usually happen when unrelieved pressure or friction occurs on one part of the body for an extended period of time. They can affect any part of the body but bony areas such as elbows, knees, heels, the tail bone and spine, shoulders and shoulder blades are the most prone to this type of injury because they’re more frequently in prolonged contact with your bed and wheelchair.

People with reduced mobility or reduced sensation, such as those with a spinal cord injury (SCI), are particularly susceptible to pressure injuries. So it’s imperative to take active measures to prevent these easily acquired injuries which can sometimes have fatal complications in severe cases.

People with an SCI and their carers can use specific strategies to help prevent pressure injuries – and prevention is the key – not only for your health, but for the cost involved for both patients and the healthcare system.

Pressure injuries cost nearly three times the amount to treat as they do to prevent.

But how do you know if a pressure injury is forming? It’s important to know that they form in stages, so regular skin checks are the first step and imperative in detecting whether you’re at risk.

Check your skin But how do you check your skin and how often should it be done?

Check all areas of your skin two or three times every day. You can do this either by yourself with a long-handled mirror or by asking your carer or a family member to check for you.

Early stages of a pressure injury will look red and possibly inflamed. They may also be warm to touch and could be itchy.

A simple blanching test is a critical part of checking the stage of a pressure injury and a good way to test circulation at a particular spot.

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Skin integrity is checked by pressing the thumb over the suspect area to see if blood flow is compromised. When skin is pressed it usually turns white temporarily, and blood flow quickly returns. If your skin doesn’t turn white when pressed, it indicates a skin problem and you should consult your local medical professional as soon as possible.

Regular movement By regularly changing position and moving your body, risk of injury is greatly reduced.

Change position every two hours in bed and every 15-30 minutes in your wheelchair. Set a timer if you need to, and make sure you avoid friction or rubbing or knocking your skin when moving.

If you’re in a wheelchair, you can move by leaning forward and side to side at regular intervals as directed by your health professional.

It’s important to be mindful of activities that could injure the skin. For example, high intensity sporting activities. And of course, be careful when transferring on and off equipment such as commodes and beds or transfering in and out of a car.

Equipment and clothing It’s very important that any equipment such as your wheelchair and bed are scripted and prescribed by a qualified occupational therapist. These items must be regularly checked and maintained so that there’s no risk of developing an injury from them.

Using correctly inflated air mattresses in bed, and pressure relieving cushions with properly prescribed wheelchairs are important steps in reducing prolonged pressure on specific areas of the body.

Similarly, clothing should be correctly positioned and not bunched up in any one area, and zippers, buttons and thick seams avoided. It’s a good rule to always check for items left in back pockets that can press into the skin without being felt.

DAILY LIVING Educate your carers Finally, it’s vital that your carers are educated and listen to your concerns during their visit. Providing a carer with a daily checklist is a good way to make sure all strategies have been followed in preventing injuries. It’s also important you ensure they’re careful with transfers, that they wear gloves and avoid sharp nails and rings. Make sure that your carer keeps your skin at the correct moisture level too – especially in winter when dry skin often occurs.

Other considerations Avoid heat injury such as sunburn, hot showers, hot kettles or anything that could burn your skin as these can easily cause pressure injuries.

If you suspect a pressure injury may be forming, relieving the pressure immediately by moving off the area is essential, as is contacting your local medical professional. ■

Pressure relieving tips Regularly move side to side to relieve pressure from the buttocks

Lean forward to relieve back and shoulder pressure

Safely transferring in and out of your chair is important

www.scia.org.au 19

NDIS PROFILE

Choice and control: A success story When Michael Tong was 21, a quadbike accident left him with a C5 complete spinal cord injury. Three years later, Michael is well underway in his first year under the National Disability Insurance Scheme (NDIS).

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NDIS

Are you getting the most from your NDIS plan?

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

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

POLICY & ADVOCACY

Squeaky Wheel

Contributors:

National Disability Insurance Scheme (NDIS) SCIA P&A is funded under the National Disability Advocacy Program (NDAP) and the NDIS Appeals and Reviews Service (ARS). The ARS assists people with disability with the appeals and reviews process if:

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

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

• N DIS access applications have been rejected • C urrent NDIS participants’ NDIS plans have insufficient funding • N DIS participants have been told they are ineligible for funding for supports they were accessing prior to transitioning to the NDIS • A fter having a plan review, participants are allocated less funding in one or more plan categories.

As SCIA P&A has attempted to resolve these issues it’s become obvious that many NDIA planners don't consider a person's individual needs, have little or no understanding of the various types of disability and their related needs and/ or they misinterpret the NDIS Act or Guidelines. There are several common issues that we’re trying to get addressed in different areas including: • NDIS transport allowance • A ssistive technology (AT) and maintenance and repairs • Disability/health interface • Core funding for personal care support The NDIS transport allowance is not always included in the participant’s plan. Nor is it always at a level adequate to meet participants’ needs, even when their statements clearly describe their goals and activities with justifications.

Sometimes the transport allowance is removed if they’re using private vehicles and are not reliant on public transport or taxis. The new transport allowance replaces the Mobility Allowance which has always been provided to eligible people with disability to offset the cost of using their own vehicles when they have difficulty or are unable to use public transport, or it’s not available.

Inadequate funding for AT has become a substantial issue for many participants who are heavily reliant on it. Often the

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planners are not adequately assessing this need and underestimating maintenance and repair costs, especially if the AT is relatively old or used regularly. Planners are also just allocating the same amount of funding for AT maintenance and repairs for each participant without considering their individual needs.

It’s difficult to forecast AT maintenance and repairs costs over a 12-month period. SCIA P&A believes the NDIA should adopt a similar service as the state and territory AT programs. In this scenario, the NDIA would hold the funds and when a request for AT repair or maintenance is made the funds are quickly released. Currently, participants with inadequate funding in their plans are waiting too long for funding to be approved under the review and appeals process for urgent repairs to core AT such as wheelchairs and hoists.

There is also inconsistency from the NDIA when funding community supports, including physiotherapy, occupational therapy and community nurses. Of particular importance is when funding isn’t provided to cover the cost of community nurses to perform catheter changes. It seems the NDIA is not entirely convinced that some of these services are disability related, viewing them as supports provided through the health system. However, SCIA P&A knows categorically – as set out in the NDIS Applied Principles – that these areas relate: “to a person’s ongoing functional impairment and that enable the person to undertake activities of daily living, including ‘maintenance’ supports” and therefore are to be funded in a participant’s NDIS plan.

Some NDIS participants who’ve been allocated inadequate funding are subjected to unwarranted stress and anxiety, which can be exacerbated by the length of time it takes to resolve issues, particularly if required to go through the NDIS Appeals and Reviews Process.

To highlight and address these issues SCIA P&A spoke with Michael Francis, NDIA Deputy CEO, on 15 May to seek a meeting with NDIA management and decisionmakers to find appropriate resolutions. If successful, it should improve the process and reduce the need for advocacy, but more importantly, minimise NDIS participants’ stress and anxiety.

POLICY & ADVOCACY

Squeaky Wheel

The inquiry into the need for regulation of mobility scooters, also known as motorised wheelchairs (update) The Australian Senate referred the inquiry to the Rural and Regional Affairs and Transport References Committee in late 2017. The report is due to be tabled in the Australian Parliament on 20 September. It will then be available online at the Senate inquiry committee webpage, but as yet there is no time nominated for public responses.

The SCIA P&A submission is one of 127 submissions. The disability sector consensus is that mobility scooters and power wheelchairs should not be speed limited due to the ongoing negative impact it would have on the users. We also believe there should be training for mobility scooter users and a public education campaign for the whole community to be cautious when using shared pathways.

SCIA P&A is hoping common sense will prevail. For further details, go to: www.aph.gov.au/Parliamentary_ Business/Committees/Senate/Rural_ and_Regional_Affairs_and_Transport/ MobilityScooters

Commonwealth Ombudsman Report on the National Disability Insurance Agency (NDIA) On 15 May the Commonwealth Ombudsman, Mr Michael Manthorpe, released a report into the NDIA's handling of reviews of decisions under the NDIS Act 2013. The report discusses systemic issues highlighted by complaints and stakeholder feedback including significant backlogs, delays in decision making and poor communication practices.

Mr Manthorpe's report acknowledges the considerable pressure the NDIA has been under to meet bilateral government targets since the NDIS rollout, which began in July 2016. But

the Ombudsman stressed this must not be used as a reason to delay other work, including reviews.

Since mid-2016, complaints to the Commonwealth Ombudsman about the NDIA's review process have represented around 32% of all NDIA complaints.

The report made 20 recommendations aimed at improving the NDIA administration of reviews – all of which were accepted by the NDIA. SCIA P&A is acutely aware of the issues raised in the Ombudsman’s report. Our service is funded to provide the NDIS Appeals and Reviews Service to assist potential or current NDIS participants who want to appeal or seek a review of their application.

The Ombudsman's Office will continue to monitor the implementation of the recommendations in the report, which are available at: www.ombudsman.gov.au/__data/assets/ pdf_file/0029/83981/Report-on-NDIAadministration-of-reviews-under-theAct_1.pdf www.scia.org.au 23

POLICY & ADVOCACY Squeaky Wheel

Campaign for Off-Road Ultralight Vehicles to Enable Access Equality (update) As reported in the previous Squeaky Wheel, SCIA P&A has been advocating to enable accessible ultralight off-road recreational vehicles to be used by people with disability at designated off-road areas near Stockton Beach, Newcastle (NSW).

We sought a meeting with Tim McCracken, MP, NSW Member for Newcastle, and were then granted a meeting with Andrew Bond, National Parks and Wildlife Service.

We were subsequently asked to forward the proposal to the Worimi Conservation Land’s (WCL) Board for consideration.

At the time of writing we were still waiting for their response. If the WCL Board approves the proposal it will need approval by the NSW Roads and Maritime Services Minister to grant a "conditional registration" for these accessible ultra-light vehicles.

The WCL’s Board and Roads and Maritime Services Minister responses will be reported in the next issue of Accord.

NSW Transport Disability Incentive Schemes (TDIS) Review Transport for NSW implemented the TDIS Review, which SCIA P&A made a submission to, earlier this year.

The review report and recommendations were expected by late March, however, at the time of writing, we were informed that these were still being finalised internally and yet to be given to the NSW Transport Minister.

SCIA P&A will report on the review and its recommendations in the next Accord.

Kelly Vincent, Dignity Party, South Australia SCIA P&A would like to bring to your attention that Senator Kelly Vincent, Dignity Party, South Australian (SA) Government, was not re-elected at the last SA elections. We also acknowledge the work and advocacy undertaken, and the positive outcomes achieved, by Miss Vincent on behalf of people with disability, their family and carers.

We corresponded with Miss Vincent to bring to her attention the SA Government’s action to withdraw the Transport Subsidy Scheme (TSS) from people with disability when they transition to the NDIS. The SA Government reversed its decision, albeit temporarily for two years, but SCIA hopes that NDIS participants will continue to be eligible for the TSS well beyond 2019. ■

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REGIONAL ROUND UP Northern Rivers - Lee Clark

Our regional people Spinal Cord Injuries Australia’s (SCIA) regional team supports people with disability living in regional areas through their NDIS journey and in exercising their rights to choice and control.

They are committed to creating independence, dignity and unlimited opportunities for people living with spinal cord injury and through our Support Coordination service have achieved some remarkable outcomes for people. Our team looks forward to hearing from you.

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 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 Vicki Gow New England 20 Murray Street Tamworth NSW 2340 T: 02 6766 6422 E: newengland@scia.org.au

Catherine Rae New England 20 Murray Street Tamworth NSW 2340 T: 02 6766 6422 E: newengland@scia.org.au

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NDIS - make sure you get the right inclusions in your plan It’s been a very busy time at the Northern Rivers office since the implementation of the National Disability Insurance Scheme (NDIS).

I have attended many planning meetings with new participants over the past year and have now started to support them to complete their annual reviews.

Unfortunately, I have found that many people have had to go back for a review of their plan due to so many details and daily needs being left out by those collecting the information.

Too many individuals are still being told by their Local Area Coordinators that they will not be offered either Plan Management or Coordination of Supports. This goes completely against the recommendations for participants to be able to take control of their plan and choose who they work with and it’s left many still very confused as to what the funding will actually pay for.

It’s a hectic time for SCIA in our region and very important to get the supports you need in your plan in order for it to work effectively. However, since 1 July some local service providers no longer provide Plan Management services which means an increase in requests for the services from SCIA. If you or a family member is looking for either Support Coordination or Plan Management, please don’t hesitate to contact me on 0421 055 992 or email northernrivers@scia.org.au

Carers Week – we’d love to see you!

Carers Week is coming up in October and we’re hosting two events for carers. If you’re caring for someone with a disability or similar, and want to connect with others in our region doing the same, then come along to one of our luncheons in October.

Save the date: Tweed on 16 October and Alstonville on 18 October Please email me at northernrivers@scia.org.au to register your interest and find out more details!

REGIONAL ROUND UP New England - Glenda Hodges

Illawarra/South Coast - Mel Gorman

New staff to connect with

TappOn and connect

SCIA’s New England office is delighted to have welcomed two new staff members this year, with Catherine Rae and Vicki Gow both coming on board as Community Services Coordinators.

One of SCIA’s Illawarra members, Daniel Hillyer has commenced an exciting journey as co-founder of TappON, a digital companion connecting service providers and people with access needs. Daniel has previously provided peer support for SCIA members in the Illawarra.

Coming from a career in the banking industry, Catherine was born and raised in Narrabri, moving to Tamworth in 2002.

She sustained paraplegia after an accident in 2008. “I live independently, and with a lifelong love of horses, continue to support family and friends in the game of Polocrosse. Though these days instead of competing, I take photos from the sideline.”

Vicki comes to SCIA following a two-year stint working as a Business Support Officer at the Tamworth NDIS Office. As the front line of support for the local area, she was nicknamed "The Gatekeeper" and her in-depth knowledge and expertise mean she’ll be a valuable resource for SCIA’s local members.

Vicki has a son with a disability, so has 10 years lived experience of all that entails. She and her husband also have a daughter. Vicki brings with her a bucket of enthusiasm, and she can make a great cup of coffee!

The New England SCIA team is really looking forward to meeting with clients and members of the area and its surrounds as they connect individuals with a range of services that will ensure they get the most appropriate supports they can from their NDIS funding.

Following an accident eight years ago and their firsthand experiences with support services, Daniel and his wife Maryanne began looking for ways to improve his support experience and allow for clearer communication with support workers.

TappON is a platform where people can find, hire and manage their daily needs. Anyone can create a profile detailing their specific needs such as daily living, personal assistance and social support. Approved profiles are then visible and available to make connections and book in support directly, whether as a one off or a continuing service.

TappON carers are highly experienced, specialising across a range of accessibility and support needs. The platform will also allow you to connect with the carer of your choice at a time that suits you.

To find out more about TappON visit www.tappon.co Louis Cremen, Genevieve Reid, Maryanne Harris and Daniel Hillyer

Catherine and Vicki

Central West - Craig Lees

Meet up in Dubbo

Catherine and Vicki

Wheelies Dubbo is an active and friendly support group for people with spinal cord injuries and other disabilities that meets at 11:30am on the fourth Wednesday of every month. Carers are also welcome to come along.

Located at the David Palmer Centre in Dubbo’s Erskine Street, you can share a cuppa and get to know others in the community whilst enjoying listening to a different guest speaker every month.

For further information contact Donna Flack on 0458 646 361.

www.scia.org.au 27

REGIONAL ROUND UP

Come and be part of SCIP

Victoria - Naz Erdim, AQA Victoria's Spinal Injury and Support Network (Spire) (nazimerdem@spire.org.au)

Sherpa program starts in the Dandenong Ranges

SCIP (Spinal Cord Injury Network of Professionals) is looking for like-minded individuals who are interested in addressing the issues facing professionals with spinal cord injury (SCI), and increasing respect for and recognition of the value, influence and abilities that they offer.

Parks Victoria has commenced a Sherpa Volunteer Program in the Dandenong Ranges to assist park visitors with limited mobility using the TrailRider all-terrain wheelchair. The TrailRider is located at Grants Picnic Ground in Kallista.

SCIP is dedicated to maximising the inclusion, job-retention and advancement of current and future professionals with SCI, and provides the opportunity to collaborate with others to discover and develop resources around career development and progression.

The program is now underway and is designed to make it easier for people of limited mobility to explore the natural beauty of the area.

The group is solely and permanently committed to meeting the complex and emerging concerns and needs of professionals living with SCI and to support all professionals regardless of their career field, title, employment status or degree of success they have had in their careers. They may be beginning their career, undergoing rehabilitation, volunteering, unemployed, employed full-time, part-time or casually, self-employed, unable to work, on a pension, on welfare or retired.

The volunteer Sherpas guide passengers in terrain wheelchairs over rugged terrain to places otherwise out of reach when using normal wheelchairs.

The specially designed single-wheeled TrailRider chair weighs only 23kg, has a cushioned seat and an electric motor for steep climbs. It is now available for hire at Grants Picnic Ground, near Kallista.

If you are or aspire to be a professional living with SCI and interested in joining SCIP, please contact us at emmabloom@spire.org.au.

Access and Inclusion Coordinator at Parks Victoria, John Kenwright, says it’s a great way for people with limited mobility to travel in comfort and safety along the trails in Sherbrooke forest.

For further information please visit the SCIP website at 2018 0625 SCIA NDIS 135 x 90 JUNE D2 OL.pdf 1 29/06/2018 2:07:08 PM www.scip.net.au.

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“This is a particularly beautiful area with amazing scenery, birdlife and natural bush, so it’s great that people who weren’t previously able to do so, can now go and see, enjoy and share this experience.

"It fits perfectly with the Parks Victoria philosophy of 'providing access to our parks for all visitors'.”

Karen Fankhauser was the trial passenger at a recent Sherpa induction day at Grants Picnic Ground.

As someone with mobility limitations, she says travelling in the TrailRider is an amazing experience.

“It felt like I was bushwalking along these tracks and through the beautiful bush to places I’d never be able to go to myself. It was wonderful, and so much better than just looking at these places from afar.”

The Sherpa program is also available in the Grampians National Parks. For further information and Sherpa volunteer bookings contact Ashlee Hope, Volunteer Officer at Parks Victoria on 03 8427 3541 or email volunteersherpa@parks.vic.gov. au Parks Victoria has TrailRider wheelchairs available for visitor use at a number of parks across Victoria and these are also available to borrow for free.

Visitors can borrow the TrailRider chairs on their own, provided they have enough reasonably fit people in their party to operate the chair.

Further information on chair locations please visit http:// parkweb.vic.gov.au/visit/ improving-park-access-for-all.

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TECHNOLOGY Graeme Smith, Ability Technology

Xbox options I used to love playing my Xbox but since my injury, I can’t use the controller. Are there any other options available for me?

While assistive technology (AT) continues to advance, one area that has often been neglected is gaming. While Windows and Mac have improved their accessibility options, dedicated gaming consoles like Xbox and PlayStation have been notoriously difficult to access for many people with a disability. Controllers are small and difficult to manage, and alternative access options are ad hoc, expensive and thin on the ground.

That’s why we’re so excited about what Microsoft is doing with the Xbox right now.

They recently announced that the Xbox Adaptive Controller will be released later this year. It features large buttons which are entirely programmable, and you can connect your own external switches to adapt it to suit you, not the other way around.

There’s no release date for the controller yet, but it should be available very soon.

Read more on the Xbox website. It’s also worth checking out the Quadstick.

Product news MyHomefone We haven’t tested this one yet, but it seems interesting. It looks like a portable landline phone but actually operates on the 3G/4G network and no landline is needed. If you have an existing landline number, you can have that number ported to MyHomefone automatically, at no extra charge.

The device features big buttons, including an emergency button on the back. This will automatically call up to six preprogrammed numbers – the phone will keep dialling until one of the six is answered. The choice of numbers is up to the individual but could include emergency response or professional monitoring services.

Plans start at $29.95 per month. See more details at www. myhomefone. com.au.

NDIS woes Our mailbox has been overwhelmed the process and causing ill-feeling. with people complaining about the NDIS • For therapists, the sub-standard design with regard to AT. Not just people with of the General AT Assessment template disability, but therapists, family members, adds hours to the reporting process and IT companies and assistive technology throttles efforts to explain properly the professionals. We thought we’d document recommendations. some of their concerns here: • The lack of training of NDIA staff • Confusion on the part of planners regarding their own relevant legislative between AT and the services needed to obligations. assess, customise, train and support it.

• Inadequate level of contact with AT • Lack of knowledge on the part of specialists by NDIA staff. planners regarding AT, leading to delays, ridiculous questions and blunt • The poor quality of some participant plans. rejections.

• Administrative delays, which in fast changing areas of AT, can lead to the • These poor decisions leading to a need to revise reports frequently. clogged appeals system, slowing down 30 accord magazine

We’ve done our bit, listening, collating and preparing a detailed submission to the Joint Parliamentary Committee on the NDIS. You can read it (and other submissions) at https://www.aph.gov.au/ Parliamentary_Business/Committees/ Joint/National_Disability_Insurance_ Scheme/General_NDIS/Submissions Or contact us for a copy.

But that’s not the end of the story.

We want YOUR HELP to strengthen our voice on the importance of AT and the NDIS. We want to hear about your good and bad experiences and invite you to send details to info@ability.org.au.

TECHNOLOGY

iPad problems I have an iPad but I’m having problems with it. My hand function is not great and I find I’m hitting all the wrong keys on the keyboard and bumping the wrong icons on the screen. I’ve almost given up as it’s so frustrating.

I’m not sure which version of iPad you’re using or the version of iOS, but in iOS 11 there are some great accessibility features that might assist you.

(if you bump other locations trying to get there). The timing can be adjusted for each of these accommodations.

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

You can also use Siri to open apps (you set this in Settings) and to dictate text input. Another option for you might be the J-Pad joystick, which can be set up to provide manual scanning for iPad functions. You could trial this to see if it’s suitable.

In particular, there’s a feature called Touch Accommodations. With these, you can set the duration after which your iPad will register a touch (Hold Duration) or the amount of time during which the iPad will ignore multiple touches (Ignore Repeat). Tap Assistance means you can set the initial touch location (if your hand wanders off after that touch) or the final touch location

Technology n

means

Independence

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Connection

Where do you start?

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

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INFORMATION AND RESOURCES

More the Same than Different: What I Wish People Knew About Respecting and Including People with Disabilities by Lorraine Cannistra Have you ever seen a wheelchair user who you thought might need some help or wanted to start a conversation with someone who has a speech impediment but were afraid you might say something offensive? This is a practical guide for anyone who may not have much experience interacting with people with disabilities.

Borrow from the SCIA library or visit: http://bit.ly/MoreSame Your Brain Knows More Than You Think by Niels Birbaumer and Jorg Zittlau Our brains are more powerful than we ever realised. Too often, we assume that people’s natures are fixed, immutable. Leading neurobiologist Niels Birbaumer turns these assumptions on their head, arguing that neuroplasticity is enough to overcome almost any condition.

Borrow from the SCIA library or visit: https://amzn.to/2L0rGV2 The Art of Recovery: Six Personal Journeys byBernadette Cassidy and Carolyn Beaver Six New Zealanders share their accounts of recovery. Whether recovering from a spinal cord or brain injury, drug/alcohol addiction or congenital condition, each of the accounts is an opportunity to step into the rehabilitation process through the eyes of those who have lived it.

Borrow from the SCIA library or visit: http://bit.ly/ArtofRec Finding Theo: A Father’s True Story of Loss, Courage, and Discovery by Timothy Krause A father’s raw account of his son’s courageous battle for life. It is also a deeper story of discovery about the people whose lives became interwoven with Theo’s: the son of an Iranian immigrant who found him beside the trail, medical professionals and the cast of friends who guarded his soul.

Borrow from the SCIA library or visit: http://bit.ly/FindingTheo Trauma Is a Team Sport: How to Turn Tragedy into Goal-Crushing by Tyson Dever and Sarah Paulk Is life even worth living? That was the gut-wrenching question Tyson Dever had to ask himself after an unexpected tragedy stripped away his lifelong dream, his most important relationship and his ability to walk. Once he decided to live, he didn’t want to simply survive– he wanted to thrive. By sharing the details of his own story, Tyson offers an action plan for both those enduring personal tragedy, and the loved ones who long to help.

Borrow from the SCIA library or visit: http://bit.ly/TraumaTeamSport How I Lived 50+ Years With a Spinal Cord Injury by Leland Olson Leland shares the rare and numerous things that have happened to his spine all starting with a fracture and dislocation when his right leg was paralysed. Over time the author has learned to live by staying busy and keeping moving.

Borrow from the SCIA library or visit: http://bit.ly/50YearsSCI

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

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REVIEW

Review: Front Up arts program Front Up is the first disability-led arts and cultural centre in Western Sydney.

It offers a wide range of programs for beginners to experienced artists. This great initiative was created by Ability Options and is free, thanks to a grant from the Packer Foundation and offers participants access to a multi-layered professional and cultural arts education. Cobie Moore was a participant in the Emerge 2017 program and discusses her experiences.

What was your artistic background prior to applying to the program?

I’m an emerging artist living and working in Sydney. I first studied Design and Art Education at UNSW Art & Design, graduating in 2015 with Honours before going on to present my thesis Aesthetics, Design and Disability at the Universal Design Conference in 2016.

Before Emerge 2017, I sold artist prints and cards on Etsy, an online marketplace which focuses on handmade and vintage items. At the same time, I also worked as an illustrator on a commission basis. I designed and illustrated Christmas cards for SpinalCure Australia in 2015 and 2016, as well as the Christmas card and accompanying animation for Spinal Cord Injuries Australia (SCIA) in 2016.

I’ve also participated in a range of exhibitions across NSW, including: 2012 – S trength of heART, Art Est Art School, Leichhardt 2013 – M ySCI, Abraham Mott Hall, Millers Point 2014 – L oo as Art, a project run by Engineers Without Borders, Customs House, Circular Quay 2015 – I magine Me, Casula Powerhouse Arts Centre, Casula 2016 – S CIA Independence Expo Art Exhibition, Australian Technology Park, Eveleigh What did the Emerge program include?

We began at the Art Gallery of NSW where we explored the exhibition, A shape of thought

by Australian artist Mikala Dwyer and the contemporary group exhibition, Out of the ordinary.

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Eggshell sculpture by Cobie Moore

We met at Seven Hills once a week for ten weeks and created our own artworks that reflected our experience at the gallery. Our individual pieces were exhibited as a group in Seven Hills and we also participated in a panel discussion about the process at the Art Gallery of NSW. Did you develop any new skills, or break out of what you would consider your normal art form?

Yes! The program inspired me to extend my art practice and experiment with sculpture. I identify primarily as an illustrator but I was encouraged by the Emerge 2017 lead artists to push myself further. I created a sculpture

REVIEW

out of eggshells in response to the theme of vulnerability. It was a long and painstakingly difficult process as I have limited hand function, but I was very happy with the work I created.

What have you been able to do since the Emerge program?

The whole experience inspired me to take my art practice more seriously. I was lucky enough to work with a wonderful group of artists who encouraged me to pursue a career in the arts and I’ve now created a Patreon page which allows people to support my art practice.

Having patrons really pushes me to create more art as I know there are people out there who love my work and want me to create more.

Following the Emerge 2017 program the artists involved were given the opportunity to exhibit at the contemporary ideas platform, Artspace in Woolloomooloo and our exhibition runs from 19 - 29 July. Our works are centred on the theme of “ugly”. My own work will be

exploring the concept of “ugly emotions” and the social pressure to always appear happy, which is especially true for people with disabilities.

I’ve also applied for a job at Accessible Arts and have recently been employed as an access and inclusion trainer. As an artist and a person with disability I’m very passionate about promoting accessibility and inclusion in the fields of art and design, so it’s a great opportunity for me to follow that passion and make a difference in the arts world for people with disabilities. ■ Cobie Moore is an artist with C6/7 quadriplegia. You can view her artworks at cobieannmoore.com For more information or to register your interest with Front Up’s programs head to www.frontup.org.au

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CALENDAR

Events INDUSTRY AUG

OCT

3-4 Aug 2018

11-12 Oct 2018

Gold Coast Disability Expo Gold Coast Event Centre, Bundall QLD

Carers NSW Biennial Conference 2018 Novotel Sydney Olympic Park, Homebush, NSW

www.goldcoastdisabilityexpo.com.au 5-10 Aug 2018 2018 IWRF Wheelchair Rugby World Championship Sydney Olympic Park, Homebush NSW

Register for newsletter and more info: http://bit.ly/CCNSW18 20-27 Oct 2018

www.sports.org.au/events-feed/2018wrwc

Invictus Games Various locations around Sydney, NSW

20-21 Aug 2018

www.invictusgames2018.org

National Disability Summit Novotel on Collins, Melbourne VIC www.informa.com.au/event/national-disability-summit

SEPT 4-5 Sept 2018 Universal Design Conference Brisbane Convention and Exhibition Centre www.universaldesignconference.com.au 13-15 Sept 2018 ISCoS Annual Scientific Meeting International Convention Centre, Sydney, NSW www.iscos.org.uk 14-15 Sept 2018 Nepean Disability Expo Penrith Panthers, Penrith NSW www.disabilityexpo.org.au

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ISCOS Dublin 2017

link resize-3mm bleed.pdf 1 4/24/2018 11:52:23 AM

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