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FEATURE

NDIS FEATURE

COVER FEATURE

Batting above average

Assistive Technology and the NDIS

Lifting and Thriving


Inform is Independence Australia’s crossdisability magazine. We encourage readers to submit suitable content for consideration by Independence Australia. All correspondence of this nature should be directed to: inform@iagroup.org.au While every effort has been made to ensure the accuracy of the information in this publication, Independence Australia assumes no responsibility for errors or omissions of any consequences of reliance in this publication. The opinions expressed in this publication do not necessarily represent the views of Independence Australia. Medical information included is not intended to be a substitute for professional advice.

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As a leading service provider, our dedicated team of co-ordinators are here to support your journey to the NDIS. We’ve got you covered with a wide range of products, equipment, services and supports for your NDIS package, all from our one organisation. STEP 1. Preparing your plan.

STEP 2. Developing your plan.

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STEP 4. Choosing your providers and implementing your plan.

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Visit independenceaustralia.com/ndis to learn more about the NDIS and how it affects you.

STEP 5. Reviewing your plan.


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contents ISSUE #29

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Strength to strength 4

In this issue of Inform we celebrate the quiet achievers who have been moving from strength to strength, against all the odds. In our feature story we chat to Dean Clifford, who is celebrating a milestone birthday and a milestone achievement. Not only does he have medical professionals scratching their heads over his achievements, but he is now sharing his resolve and ability to make miracles happen by mentoring and supporting young people with EB.

Lifting and Thriving

Also in this issue we speak to Isabelle, a young carer who has been receiving support from the organisation ‘Little Dreamers’. In this article we hear how special this support has been for Isabelle, and how it has helped her to achieve her goals and dreams. Much like Dean, the Little Dreamers crew work quietly in the background, supporting young carers to dream just like other young people.

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Inform has also moved online, with our website InformOnline.org.au launching recently. InformOnline is your one place for disability information – with articles and contributors from all over the country. To find out more visit www.informonline.org.au

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The Inform team is committed to bringing you quality, informative content wherever you are in Australia, so we encourage you to get in touch with us if you have a story of independence to share. You can reach the team at inform@iagroup.org.au

Alison Crowe

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NDIS : Assistive Technology

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Batting Above Average

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Inform Highlights Summer News

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Getting The Most Out Of University

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Dreaming Big Staying Sun Smart

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Chronic Pain Management Managing Editor: Alison Crowe Deputy Editor: Kirby Fenwick Senior Designer: Mark Lovatt Designer: Sarah Zen Cover Story Photography: Glenn Hunt

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Lifting and Thriving Dean Clifford has spent his life confounding medical experts and scaling seemingly insurmountable obstacles and the forty-year-old motivational speaker is not about to stop anytime soon.

Pics: Glenn Hunt

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‘It's a fairly full on process but I've got it sort of figured out, so I know what my limits are, I know how far I can push myself,’ he said.

very morning Dean Clifford spends three to four hours tending to his body. He checks his hands and feet, his elbows and knees. Far from being exceptionally vain, Dean’s morning routine is how he ensures that he can do the motivational speaking that takes him around the world. It's also how he ensures he can work as an ambassador for DEBRA Australia and spend hours a week in the gym, lifting what he describes as extreme weights.

Dean was born in 1979 with a severe version of Junctional Epidermolysis Bullosa, or EB as it’s commonly known, a genetic skin condition that causes the skin to be incredibly fragile. ‘As long as I can remember I’ve been doing the bandage routine every single day, which is about four hours every morning. ‘It's just a matter of working out every single morning what I need to do to get the best out of my skin. ‘I describe [EB] as kind of like a loaf of bread. If you've got pieces of bread stacked one on one on top of each other, you could just push out the middle layer because there's no butter or nothing to hold all the layers together to keep the strength and consistency there, so my skin doesn't have the anchors to hold it together. ‘My skin is incredibly fragile. It's in the medical books as having the strength and consistency of basically tissue paper. ‘So, I've got to be incredibly careful about absolutely every part of my life.’ When he was initially diagnosed, Dean’s parents were told he’d be unlikely to live beyond three or four years old. Today, after celebrating his 40th birthday in Las Vegas late last year, Dean says he enjoys proving the medical experts wrong. ‘They said by the time I was four my quality of life would be so bad that life wouldn't be great. The outlook that was given to my parents wasn't great at all, to be staring down surviving to be three years or fouryears-old so yeah, it's something that I've sort of classed as a bit of a personal hobby of mine to prove all the medical world wrong and be able to still be living a really quality, high standard, quality life and be able to achieve everything that I'm achieving these days.’ And what he is achieving is pretty remarkable.


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From the airwaves to the speaking circuit Two hours north west of Brisbane is the Queensland town of Kingaroy. It’s a small town with some big claims to fame, being home to Australian cricketer Matthew Hayden and naturalist Bob Irwin. It’s also where Dean Clifford grew up. And it’s where the seeds of his successful motivational speaking career where sown.

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‘I've got to be incredibly careful about absolutely every part of my life’

‘Straight out of school I was really lucky that the local radio station invited me to come along to work part-time,’ Dean said. ‘That eventually led me to talking a little bit about my life living with EB on air and in some of the radio programs.’ Soon, Dean was regularly working on air, co-hosting several radio programs. As his profile grew, organisations within the community started to get in touch and he began speaking at events and MC’ing. And the more Dean shared about his life, the more people around him told him how amazing his story was and encouraged him to look at doing motivational speaking. ‘I sort of was just blown away by the compliment, but I thought there wasn't anything really special about my life story,’ he said. But the idea stayed with him and years later, after what he describes as some difficult stages in his life, he thought maybe he did have something worth saying, a story worth sharing, some tools and tips that might be useful for others. ‘I started to think about my life and think about what mental tools I've used and what things I've learnt. From there I came up with the idea for my first presentation and that was incredibly well received,’ he said. With eighteen months, Dean was travelling around the country, receiving phone calls from the Prime Minister and speaking to groups as diverse as high school students and the Australian Federal Police. ‘[It] sort of happened very organically but incredibly fast from that first presentation.’

Dean says for most people his presentation is a slow burn. The mental tools he uses in his day-to-day life stick in the minds of the people he speaks to and when they face challenges in their own lives, those tools come back to them. ‘My presentation isn't something that you walk out of the room thinking okay, now I know how to make a million dollars. It's not that kind of presentation. It's just a real-life discussion. I'm sharing my story. I'm not putting myself up on a pedestal or thinking that I've got all the answers to the world, I just share my story, how I overcome all the challenges that I face. ‘It's been an amazing journey and something that I absolutely love these days.’

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Lifting and thriving Dean Clifford has spent his life defying the odds. He says it’s all a matter of knowing his limits but also pushing those limits. And it’s in the gym where he has found joy doing just that. ‘I've only been in the gym for the last 15 years or so, it was only something that we uncovered as a complete accident that I could lift these kinds of weights,’ Dean said. These kinds of weights include up to 150kg at a time. It seems improbable given how fragile Dean’s skin is, but he says the variation of movement in the gym is what makes it possible. ‘That's the bizarre aspect with my skin. I would class typing on the computer as more dangerous than being in the gym lifting weights.

‘It's all about knowing your limits’

‘That's the thing that has all the medical world scratching their heads at, as to why I can continue to lift the kinds of weights that I'm doing and my body continues to thrive under the extreme training that I do yet I can sit and type and I'll end up with multiple problems on the tips of my fingers from typing away or if I try to walk for kilometres at a time then I'll end up with huge problems on my feet from the wear and tear. ‘It's all about knowing your limits and knowing how far I can push myself and knowing what's happening to my body. I'll stop in the gym the second I feel that something is starting to get damaged and then we'll work out what I need to do.’ The medical world might be shaking their heads, but Dean is nonplussed. For him, this is just his life. From the gym to the speaking circuit to the sidelines at Suncorp Stadium to see his beloved Brisbane Broncos play, and now with his role with DEBRA Australia, Dean will continue to defy the odds, to push the limits and to achieve big things.

To contact Dean about motivational speaking, visit www.deanclifford.com For more information about DEBRA Australia, visit www.debra.org.au


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NDIS Feature

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Assistive Technology and the NDIS Assistive technology comes in a vast range of different sizes, shapes and colours. It acts as a bridge between you and your environment, often making what was inaccessible accessible. But where can you learn more about it and how can you include it in your NDIS plan? It’s an overcast afternoon in regional Victoria and Judi Potts is explaining how she makes a cup of tea. ‘When I'm making a cup of tea. I can't see the water. If it's a white cup, I can't see the water. If it's a dark cup, I can't see the water.’ A vision impairment poses challenges for Judi in the kitchen, but assistive technology has made a big difference. ‘So, I've got what's called a liquid level indicator.’ Judi holds up a little red box. It’s about the size of a matchbox. Three metal prongs extend out the top and down the side, two long and one short. She sits the box on the edge of the cup. As she pours hot water into the cup she explains how the prongs work. ‘That first beep that goes that tells me when the water is at a high enough level for milk to be put in the cup. When it's a

steady beep, that means that the water has reached the top of the cup and you’re to stop. So, I can't overpour the cup and burn myself which is terrific.’ Assistive technology can play an important role in making the world more accessible. From power wheelchairs to liquid level indicators, assistive technology comes in all shapes and sizes. But what all assistive technology does is provide you with the means and supports to engage with your community, live independently, work or travel. Some assistive technology can be expensive or require customisation, while others are simple and can be brought straight off the shelf. Whatever your assistive technology needs might be, you may be able to access funding through the NDIS. Read on to learn more about what assistive technology is and where you can learn more, how the NDIA defines different assistive technology and what might be involved in including it in your plan.


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What is assistive technology? Assistive technology comes in a vast range of different shapes and sizes and colours. From power wheelchairs to communication boards, to screen reading software, there is an assistive technology to assist you in just about every area of your life. From education and employment to transport and navigating the world around you, the right assistive technology with the right supports at the right time can be a life changer. How do I find out more about assistive technology? There’s a range of resources available to help you learn more about assistive technology. Podcasts like Easter Seals and Inform as well as organisations like ISAAC, the International Society for Augmentative and Alternative Communication, can be valuable sources of information. So too are allied health professionals. Talk to your occupational therapist, rehabilitation engineers or speech pathologists to see what might be available. Another great resource is social media and online discussion forums where valuable information is often shared. From reviews about the assistive technology itself to the service provided by the company who manufacture or sell it, reviews found on social media or online discussion forums can be useful in helping you decide if a piece of technology will be a welcome addition to your life. The NDIA also publishes an Assistive Technology and Consumables Guide. However, it’s important to note that this guide does not cover all the assistive technology that is available or that may be funded in your NDIS Plan. What it does is provide a list of the most common assistive technology. In addition, the guide also provides the funding category and line item information for specific technology and advises if an item requires an assistive technology assessment.

NDIS Feature

the right assistive technology with the right supports at the right time can be a life changer. Assistive technology assessments: the why and how While most Basic and Standard assistive technology will not require an assessment, anything specialised or complex will. The assistive technology assessment will help you determine what your needs are and what the most appropriate assistive technology is for you. Assessors may be an allied health professional, a registered dietician or psychologist or assistive technology mentor. How to buy assistive technology The way your NDIS plan is managed will determine how you purchase assistive technology. For example, if you are selfmanaged, you can choose your own assistive technology suppliers and you are responsible for paying any invoices and then claiming from the NDIS. However, if the NDIA manages your plan, your Local Area Coordinator or Support Coordinator will assist you to find a registered NDIS provider and the NDIS will pay the provider directly. And if your plan is managed for you, your plan manager will assist you to find the right assistive technology and assistive technology provider and they will pay them on your behalf.


NDIS Feature

NDIS and assistive technology The list of available assistive technology is long, with hundreds of different products. To simplify the process of accessing it via your NDIS plan, the NDIA split assistive technology into four different levels. Level 1—Basic Assistive Technology Basic assistive technology is safe to operate or use and you won’t need specialised assistance to set it up. Basic items cost less than $1500. In addition, you don’t need an assessment for this type of assistive technology. You can buy it online or from a local shop. Examples include non-slip bathmats, adapted grip equipment or mobility canes. Level 2—Standard Assistive Technology You can generally buy Standard assistive technology from an assistive technology supplier. Standard items are not customised, however you’ll probably need some assistance setting them up and making adjustments. For example, altering the height. An assistive technology assessment will sometimes be required for Standard items. Some examples of Standard assistive technology include transfer benches, laundry and washing line adaptations and handrails. Level 3—Specialised Assistive Technology While Specialised assistive technology is similar to Standard in that you can buy from an assistive technology supplier, Specialised items often require some adjustments or modifications to suit the individual. Specialised items will require an assistive technology assessment and a written quote. Examples include electronic Braille displays, stair lifts and pressure mattresses. Level 4—Complex Assistive Technology Complex assistive technology is custom made. It often requires ongoing support including training. This kind of assistive technology requires an assessment and a written quote. Examples include power wheelchairs, bed rails and hearing aids.

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Tips and Advice: An assistive technology assessment prior to your planning meeting can help ensure the NDIA has enough evidence to decide what technology is reasonable and necessary.

Consider setting up a trial to test if a new assistive technology is the best fit for you before you buy.

Assistive technology valued at more than $1500 will require two quotes.

Don’t forget about repairs and maintenance. And remember that you can include these in your plan.

Check out social media or online discussion forums for reviews on the assistive technology you’re interested in or ask friends or family who already use similar technology what their thoughts are.


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amputated. Eventually in 2016 he was successful in his attempt and since has gone on to become a truly inspirational athlete for those who have disability and incontinence. Jamie was introduced to TENA by his continence nurse and was inspired by the conversation. He uses TENA daily and enjoyed having open conversations about his incontinence and how TENA makes peoples lives easier. Jamie now has set his sights on the 2024 Paralympic games.

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Batting Above Average


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They may be looking to avenge narrow losses against South Australia and NSW at the National Cricket Inclusion Championships in January, but winning isn’t everything for the Victorian Blind Cricket team. Being a part of this close-knit team also means working together and supporting one another, both on and off the field.

Pics: Meredith O'Shea

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t’s a warm Monday night in Melbourne and the members of the Victorian Blind Cricket team are gathering at Junction Oval. On the pristine surface of the historic ground in St Kilda, they begin their fortnightly training session with a few laps of the oval. Later, they’ll run drills on the oval before heading inside to Cricket Victoria’s state-of-the-art facilities for batting and bowling practice and team meetings. There’s a lot to get through and the National Cricket Inclusion Championships are only a few weeks away. While the team runs laps and drills on Junction Oval, coach Brett Wilson watches on. An unassuming man, slight of build, Wilson boasts an impressive cricket resume. He began playing blind cricket thirty years ago in his native New Zealand and only recently retired from International Cricket after more than 80 international matches for New Zealand and Australia. ‘When you get older, you start reflecting on stuff that you’ve done and when I was reflecting on it, I was thinking well, I have done quite a bit. Bit of an achievement, which I’m quite proud of,’ he said. Wilson reels off his achievements quietly, a handful of world cups, a couple of tours of England, three Ashes series. He’s travelled the world, visiting India, Pakistan, Sri Lanka and South Africa alongside England. His love for the game is obvious and he cites the camaraderie of the team as something he particularly enjoys. ‘Good camaraderie, teamwork, team spirit. Not just on the field but off the field. You start networking with people and you find that your social life circle is bigger, you can go to more events. And it’s a good network that if you’re not feeling very well, you can always ring someone up to talk to or chat over skype and just tell them about your day because they understand, they’re vision impaired as well.’


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‘Normally in the mainstream world, people just go people with vision impairment should not be playing sport…but really, it’s probably one of the best things to do.'

Getting Into The Game Like most members of the team, twentyyear-old Johnny Boland was introduced to the game by others with vision impairments. ‘They suggested because I was losing my vision gradually that I should get involved in blind sport and cricket was the one that I was shown,’ he said. Johnny has cone-rod dystrophy, a condition that affects the light-sensitive cells of the retina. The condition affects his depth perception and peripheral vision. After joining a local team, Johnny quickly progressed to the state team. And now the national team beckons. ‘I’m in the [Australian] squad at the moment. So, I’ve been to a training camp to be selected and they’ll select the squad after our national carnival in January.’ Coach Brett has plenty of praise for the young cricketer. ‘He made the squad, the Australian squad, through determination and he’s still pretty humble about it,’ Brett said. ‘He underestimates himself… The first couple of years he was very tentative, and I could see that he wanted to progress. ‘But now, I’ve seen that his game has actually picked up. He’s got more aggressive with his shot selection, he’s attacking the ball. His bowling’s faster.’

Above: Johnny Boland has his eye on a spot in the Australian squad.

Communication Is Key Like any sport, fitness is important for cricket, but so too is communication. And so too is communication. For blind cricketers, communication is far more than simply a valued part of the team experience. Each team fields eleven players, four of whom must be totally blind, or B1 classified players. Another three must be partially blind (B2) and up to four can be partially sighted (B3). The combination means that partially sighted players must use their voice to help direct their teammates. For Matt Cameron, his ability to communicate effectively is just as important as his fitness. The top order batter describes communication between players as vital. ‘If I’m on the boundary and I’ve got a lesser sighted player, like lesser than me, in front of me, I can tell them left or right, tell them where the ball is so we can get them to be our first line of defence to stop the ball.’ For Matt, that four of his teammates must be totally blind adds an extra challenge to the game, but it’s one he values. ‘Not a lot of sports favour totally blind people,’ he said.


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‘It’s great to see those guys represent their state and country. Because normally in the mainstream world, people just go "people with vision impairment should not be playing sport"… but really, it’s probably one of the best things to do.’ Matt has Usher Syndrome, a condition characterised by both hearing and vision loss. He was born deaf, but it wasn’t until he was 16 that he began to lose his vision. ‘It’s basically like looking down a tunnel. So, I have no peripheral, just central vision.’ The twenty-two-year-old is originally from NSW, where he started his cricket journey playing locally and for the state team. A move to Victoria in 2018 brought him to the Victorian team where he has been a welcome addition to the side. ‘[Matt] excels at most sports,’ Brett said. ‘He’s very fit, he trains a lot.’ ‘His batting is fantastic, and his fielding is excellent. You can put him anywhere in the field and he can track that ball, whereas most of us can’t do that. We lose it at some point, but he can track it all the way which makes him a decent boundary fielder,’ Brett said.

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‘It’s basically like looking down a tunnel. So, I have no peripheral, just central vision.’ Modified To Our Needs While the rules of blind cricket are based on the traditional laws of the game, there are some adjustments that make the sport more inclusive. The ball is the most significant adjustment. Instead of the traditional leather, it’s plastic and larger in size. The stumps too are different, larger and fluorescent in colour. The size and colour of the stumps helps the players, both partially sighted and blind to orientate themselves. While the differences in the ball help players to hear the ball coming, Johnny says they also help the batters to connect. ‘Most people playing blind cricket will sweep the ball rather than stand up and hit it. So you have to sweep your bat along the ground and you’ll swing across, the idea being there’s more surface areas to cover and therefore you have a better chance of hitting the ball,’ he said. There are also slightly different rules depending on the player: with totally blind players allowed to take catches after the ball has bounced and unable to be given out stumped. In addition, bowlers can only bowl underarm and they must call out ‘play’ when they release the ball. According to Matt, these modifications make the game more inclusive. ‘The game’s modified for [our] needs. ‘It’s honestly fun,’ he said. ‘Especially with the style of cricket we’ve been playing lately, it’s a lot faster and a lot more enjoyable. ‘

Left: Matt Cameron demonstrates the sweeping batting style used in blind cricket

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Championship Beckons As much fun as they might be having, the Victorian team will also be looking to avenge two years of close losses at the next National Cricket Inclusion Championships in January. After dominating in the National Championships for more than a decade, Brett says the last two years, have been bitter pills to swallow. ‘We just expected we were going to win it,’ he said. ‘For now, we’re rebuilding.’ But the team is also focused on recruiting young players and looking at ways to make the sport more welcoming and engaging for them. Including introducing a faster style of game. For now, Brett echoes his earlier sentiments about the extra benefits of being involved in blind cricket, namely the camaraderie and friendships but also the opportunity for travel. ‘You can always go to the next level, play for your club, play for your state, play the elite level of cricket and make friends all over the world. ‘Come down, join a team,’ he said. Matt echoes Brett’s encouragement, describing how the friendships you can make as being especially great. ‘The guys down here are pretty chill and pretty relaxed. And honestly, if we see a new person we grab them and teach them. If they don’t enjoy it, that’s fine. But if you try it, we’re more than happy to help you out.’

History of blind cricket

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Right: Brett Wilson values the friendships and travel opportunities cricket has given him throughout his distinguished career.

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The origins of Blind Cricket can be traced to Prahan in Melbourne in 1922. A test match was being played in Melbourne at the time and a group of blind and vision impaired people were inspired to play themselves. They came up with the idea of putting rocks into a can and using it as a ball. Soon after, the Victorian Blind Cricket Association was formed. The first ground and clubhouse for blind cricket was built in Kooyong in Melbourne in 1928. In 1952, the first National Blind Cricket Championships were held. By then, the rocks in a can had evolved to cane wound through a wire frame and filled with lead and bottle tops. Today, Blind Cricket is played across the country with state teams competing in the National Cricket Inclusion Championships. From there, the Australian team competes in T20 and One Day International world cups. To find out more about blind cricket visit www.blindcricket.org.au

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Highlights from Inform Online

How the NDIS helped me to travel the world Travelling overseas is a rite of passage for many young Australians. A chance to see the world, experience new cultures and meet interesting people...

Learn

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NDIS 101: Plan Review Navigating the NDIS can be daunting, especially if the NDIS marks the first time you or your loved one are accessing supports and services. The Inform NDIS 101 series aims to take some of the confusion out of understanding...

Write for Inform! Do you have a story to tell or an experience to share about disability? We're looking for people with disabilities and those who support them to submit their writing to be published on the Inform website. Pitch us your story, suggest an interview idea or maybe you’ve got some advice or tips that might be helpful for Inform readers. We want to hear from you! Get in touch by emailing us at inform@iagroup.org.au

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Whimsy Izzy Wheels a conversation starter Irish sisters Ailbhe and Izzy Keane actually are reinventing the wheel. The duo are the brains behind Izzy Wheels, a company who design and sell stylish wheel covers for wheelchairs...

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News

‘This strategy is all about giving more people with disability, who have the desire and capacity to work, better access to the right supports to achieve their employment goals while breaking down barriers that they face trying to get a job,’ Minister for the NDIS, Mr Stuart Robert said. Currently 24% of NDIS participants are employed. The government wants that figure to be at 30% by 2023. Minister Roberts said that that increase was part of the governments short term goals for the strategy but that part of the long-term focus is the barriers faced by people with disability in the workforce, including employers. ‘We've got a short-term goal, over the next three and a half years, but we've got a long-term focus on how do we get employers in this country to recognize the value of Australians with a disability.’

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The Government has announced the first ever NDIS Participant Employment Strategy. The strategy, which will operate around the country, will focus on empowering NDIS participants to succeed in the workplace.

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Victorian carers access new discounts Changes to the Victorian Carer Card mean that cardholders can now access the same discounts available to Seniors Card holders. The Carer Card is available to primary carers who will now enjoy discounts from more the 4000 businesses, including restaurants, financial services and recreation activities like Melbourne Museum and Melbourne Aquarium. For more information on what discounts are available visit www.seniorsonline.vic.gov.au


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South Australia prioritises inclusion The South Australian government has taken a big step forward towards making their state more accessible and inclusive for people with disability by launching the State Disability Inclusion Plan. Called Inclusive SA, the plan outlines four key areas for action: inclusive communities, leadership and collaboration, accessible communities, learning and employment. “We are committed to ensuring all South Australians with disability can live the lives they choose, with fair and equal access to supports, services and places, like any other South Australian,” South Australian Premier Steven Marshall said.

Community consultation was a significant part of the development of the plan, with more than 1000 ideas contributed by the community, and will continue to be an important part of the Plan in the future, ensuring that the actions in the plan remain relevant to the community.

“One in five people in South Australia report living with disability. I want us to be proud of how we include people with disability in South Australia.”

The plan can be read online at www.dhs.sa.gov.au/inclusivesa

Plan for last 20% The Government has released their plan for the final stage of the NDIS. Announced by NDIS Minister Stuart Robert at the National Press Club, the plan has six key focuses. Those six include improved planning processes and easier plan reviews, including participants having an opportunity to see a draft of their plan, and improvements in the approval process for assistive technology and home modifications. In addition, there will be increased engagement and collaboration, with new community connectors for the CALD and Indigenous communities and support for aging carers. More equitable and consistent decisions will also be a focus, include budget flexibility for NDIS participants and the continuations of an independent assessment pilot. The improvements and changes are expected to happen alongside better internal processes for the NDIS including a Workforce Strategy, a pledge to ensure the NDIS is financially sustainable and a commitment to improve long term outcomes for participants. Minister Robert said the plan was about ensuring the longterm success of the NDIS.

Reinforce and OPA join forces Reinforce and the Office of the Public Advocate have joined forces to produce two brochures that promote supported decision making and the importance of communication in the health sector. The first of the brochures is aimed at health practitioners and stresses the need to avoid jargon, or to explain it. The second brochure helps patients and consumers to understand what their rights are to provide them with the tools to explain those right to health services and practitioners. Reinforce is an advocacy organisation run by and for people with intellectual disability. For more information about Reinforce, visit www.reinforce.org.au


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How to get the most out of your university experience University can pose plenty of challenges for students with disabilities. But there are services and supports that can help you to tackle those challenges. Read on to learn how you can get the most out of your university experience.


Feature

There are practical challenges of living with disability while attending university. Those challenges include maintaining energy levels, the physical accessibility of the campus and the accessibility of the learning materials. And even the ability to get to the university in the first place. This is not an exhaustive list of the challenges faced by students with disability. There are plenty more not listed here. It’s because of these challenges that students with disabilities often need additional supports. And universities are obligated to ensure those supports are available thanks to the Disability Discrimination Act 1992 and the Disability Standards for Education. Some of the additional supports and services universities must offer include providing students with reasonable adjustments and ensuring an environment free from discrimination. Equitable learning and reasonable adjustments One of the ways universities meet their obligations to students with disabilities is by providing specialised disability support services, sometimes called equitable learning services. Research indicates that students that seek support via these services enjoy greater academic success. And it makes sense. Disability support services can help to level the playing field, providing specific supports to students that can mean the difference between succeeding and not. Some examples include providing note takers or auslan interpreters. Many disability support services work to help students have reasonable adjustments made. Those reasonable adjustments could relate to additional time for exams or extensions for assessments. Many services can also provide access to reduced study loads where they may not always be available. For example, part-time instead of full-time study. In addition, alternatively formatted study materials or assistive technology like voice dictation or screen reading technology can often be provided.

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Why are you going to university and what do you hope to achieve? Of course, accessing disability support services is not compulsory. While it can be helpful, you're under no obligation to disclose your disability or connect with services at your university. How to get the most out of your university experience? So how can you get the most out of your university experience? We have some tips that will help you do just that. First up, be clear about what your goals are. Why are you going to university and what do you hope to achieve? If you know the answer to those questions, you’ll be in a much better position to succeed. Once you have your goals locked in, look for a course or degree that matches those goals. Explore the options available to you. If there’s a course or degree that you’re keen to enrol in and you’re worried there might be a hurdle or barrier to you doing so, challenge it, if you can. Even if you’ve already approached the disability support services at your university, talk to your lecturers. Be open about the challenges you may face and the supports you might need. Work with them to find solutions. Look after yourself. Your wellbeing is the number one priority. So, if you’re feeling overwhelmed or stressed out, consider the options available to you to relieve some of that strain. You could reduce your study load, take a leave of absence or even just arrange some extra time to submit your assessments. And, finally, have fun! Enjoy the experience of higher education and all that it has to offer.

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Dreaming Big There are around half a million young Australians providing care to their loved ones. Little Dreamers is an organisation that aims to support those young Australians, giving them access to supports and services that make life just that little bit easier. Amazing is how eight-year-old Isabelle describes her experience with Little Dreamers. The grade two student has been involved with the organisation for only two years, but mum Kylie says it’s already been incredibly beneficial for her daughter.

‘Young people who provide unpaid caring roles are often quite overlooked in their family structure, especially in families where the young person may not be the primary carer…a lot of these kids grow up faster than they should,’ she said.

‘Little Dreamers has helped her understand that she’s not alone,’ Kylie said.

Growing up, Madeleine received support from an organisation who provided her with a mentor. It’s here that the genesis of Little Dreamers can be traced.

‘There’s a lot of kids like her and Little Dreamers gives her the opportunity to meet them.’ For Little Dreamers co-founder, Madeleine Buchner, introducing young carers to each other is one of the most important things the organisation does. ‘When you think you're the only one who is doing anything, or you think you're the only one who understands, or nobody gets it, we're showing them that there is actually a community of people around them who get it,’ Madeleine said. Madeleine, who grew up with a sick little brother, understands exactly what the young people engaged with Little Dreamers are going through.

‘We started with one program, which was our Dream Experience Program,’ Madeleine said. ‘And over the last 10 years… we've developed more programs, we've got more funding and now we work with about 2500 kids per year across the whole of Australia to improve their quality of life across the five main risk areas: education, employment, social connectedness, mental health and financial disadvantage.’ Today, alongside the Dream Experience Program, Little Dreamers run school holiday programs across the country, one-on-


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Left: Founder of Little Dreamers, Madeleine Buchner, middle, wants young carers to know they're not alone.

Right: Isabelle was granted a Little Dreamers Dream Experience to say thank you for all the hard work she does to help look after her younger brother.

one mentoring programs, a Big Dreamers program, a personal development and leadership program for 13-18-year-olds, and an online peer support platform called The Dreamers Hub and a school’s program that aims to support and train teachers to identify and support young people with caring roles in their classrooms. Isabelle has already spent time in the Little Dreamers School Holiday program, which is all about ‘getting out and having fun’ Kylie says. This year, Isabelle also received a Dream Experience which included a family stay in the city and tickets to Hugh Jackman’s concert. ‘She said it was the best day ever! Seeing her huge smile when the concert started was priceless and I know she will remember it for the rest of her life.’ Kylie said. For Kylie, that Isabelle has had those experiences is very special given how tough and scary things can sometimes be. Isabelle’s younger brother Mitchell was born at 29 weeks and suffered a brain haemorrhage. As a result, he lives with cerebral palsy and epilepsy. ‘[The Dream Experience] was given to Isabelle to say thank you for all the incredible work she does to help us look after Mitchell,’ Kylie said. ‘Having a brother with a disability and high medical needs is hard, it’s very stressful for her and she sacrifices a lot. In saying that, having Mitchell as her brother has taught her to be patient, compassionate and caring to all. With Little Dreamers help we know she will grow up to be an amazing young lady.’

‘There’s a lot of kids like her and Little Dreamers gives her the opportunity to meet them.’ ‘We are very lucky to be a part of the Little Dreamers family.’ For Madeleine and Little Dreamers, the work the organisation does is not about limiting or reducing the number of young carers in Australia. ‘We are never going to reduce, or I don't think we're ever going to reduce the number of kids who take on caring roles in their families,’ she said. ‘But we can reduce the risk factors that they face and increase the support that they receive. And so, it's important that Little Dreamers exists to provide that opportunity for our kids and make sure that they do have access to the childhood that every child deserves.’ For more information about Little Dreamers visit: www.littledreamers.org.au


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Health Feature

Staying Sun Smart As summer approaches and temperatures rise again, protecting ourselves from the harm of UV radiation becomes increasingly important. We all know the Slip, Slop, Slap slogan that encourages us to Slip on a shirt, Slop on some sunscreen and Slap on a hat. But did you know that SunSmart now encourages everyone to Seek some shade and Slide on some sunglasses? The additions recognise that we should do all we can to limit our exposure to UV radiation. But what is UV radiation and why do we need to limit our exposure?

What is Ultraviolet radiation? According to Sun Smart, a program from Cancer Council Victoria and VicHealth, UV radiation is a ‘type of energy produced by the sun’ that causes sunburn, tanning, premature aging and eye damage. It is the main cause of skin cancer. This energy produced by the sun appears as three wavelengths: UVA, UVB and UVC. UVA and UVB are the two we hear about a lot because they are the two that reach the surface of the earth and pose the biggest risk. While we can see and feel the light and heat of the sun, UVA and UVB rays are invisible. That means that we won’t see or feel the damage caused by UV radiation until it’s too late.


Health Feature

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How to protect yourself from UV radiation Following the Slip, Slop, Slap, Seek and Slide slogan will go a long way to helping you to protect yourself from the sun’s damaging rays. Slip on a shirt: Good sun protective clothing includes tops with collars and sleeves and pants or skirts of at least three-quarter length. Sun Smart suggests that ‘tightly woven, lightweight natural fabrics such as linen, cotton or hemp’ provide better sun protection. In addition, layering of garments and darker colours also keep you better protected from harmful UV radiation. Slop on some sunscreen: When deciding what sunscreen to buy, opt for a SPF30 or SPF50, both of which provide good sun protection, if they’re applied correctly. Look for a broad-spectrum sunscreen that will help protect you from both UVA and UVB. And always check the use by date and store the sunscreen in temperatures below 30 degrees. When applying sunscreen, don’t skimp! SunSmart suggests a ‘teaspoon of sunscreen for [your] head and neck, each limb and for the front and the back of the body’. And remember to apply at least twenty minutes before you head outside and to reapply every two hours or after swimming or excessive sweating. If you’re not sure what kind of sunscreen you should be using, talk with your doctor or chemist. Slap on a hat: When talking sun protection, not all hats are equal. Look for a hat with a wide brim, at least 7.5cm, a bucket hat or a legionnaire hat. Sun Smart does not recommend baseball caps as an everyday option however they are a good choice for active recreation where other styles like wide brimmed hats may not be practical. Seek shade: Finding some shade when you’re outside is a good way to protect yourself from UV radiation. Look for trees, shrubs or the shadows cast by buildings or pergolas or shade sails. And don’t forget portable shade like umbrellas.

Slide on some sunglasses: Like hats, not all sunglasses are equal when it comes to sun protection. Sun Smart suggests a few things to look out for when choosing sunglasses. First, choose a ‘close-fitting, wrap-around style’. Second, check that the sunglasses meet the Australian Standard (AS/ NZS1067:2003). The Australian Standard includes five categories of sun protection, Sun Smart recommends choosing category 2 or higher. If the sunglasses boast an Eye Protection Factor or EPF, look for a rating of 9 or 10. But what about Vitamin D? Vitamin D is an important hormone that helps the body to control calcium levels in our blood. We need Vitamin D to ensure we have strong bones and muscles. While we can get small amounts of Vitamin D from foods like fish and eggs, the sun is the best source of Vitamin D. So how do we ensure we get enough Vitamin D while staying sun safe? During spring and summer, when UV levels are high and we’re often spending more time outdoors, you only need a few minutes of UV exposure mid-morning or mid-afternoon. People who may be at risk of Vitamin D deficiency include people with naturally dark skin, people who avoid the sun or who spend a lot of time inside, those who wear covering or concealing clothing and people with disabilities or diseases that impact Vitamin D metabolism including cystic fibrosis, coeliac disease and inflammatory bowel disease. There is only so much Vitamin D the body can absorb, so spending more time in the sun won’t increase your Vitamin D levels, but it may increase the risk of sun damage that can lead to skin cancer. So, remember, while Vitamin D is important, it’s equally important to Slip, Slop, Slap, Seek and Slide. Please note the information supplied is general in nature. Please consult your medical practitioner for individual advice.


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Health Feature

What can psychology offer in

Chronic Pain Management? Anyone who suffers from persistent pain knows how much it can severely impact health and well-being. Psychology has come a long way in helping people manage persistent pain. Psychological factors such as mood, beliefs about pain and coping style have been found to play an important role in an individual’s adjustment to persistent pain.


Health Feature

In many cases, people respond well to psychological interventions, particularly those that target pain self-efficacy (PSE) and pain catastrophising (PC). PSE reflects the confidence people have in performing activities whilst experiencing prolonged pain. It relates to feelings of control a person has over their pain symptoms and selfmanagement. Interventions that increase understanding and a sense of control over pain have been shown to improve PSE. PC relates to a person’s unhelpful thinking styles and exaggerated negative concepts around the experience of pain. In addition to causing distress, high levels of PC have been linked to disability and depression in chronic pain sufferers. Cognitive Behavioural Therapy for Chronic Pain Cognitive behavioural therapy (CBT) for chronic pain utilises similar techniques that are used in any CBT intervention, however, the focus is on the psychosocial factors that influence a person’s pain. Therefore, the first goal is to help people alter their perceptions of their pain. The task of the therapist in this instance is to help people see their pain as something that they can learn to manage, rather than something that is overwhelming to them. The second goal of CBT is to provide self-regulatory and stress management skills. Self-regulatory skills include relaxation training, guided imagery and distraction techniques which are all designed to help reduce the client’s autonomic negative response to the pain. This helps the person reduce anxiety around their pain by physically altering their unhelpful physiological responses. In addition, stress-management skills involve teaching the client how to communicate, problem solve, time manage and plan to ensure they can adequately manage their work and everyday activities, despite their debilitating pain.

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Acceptance and Commitment Therapy for Chronic Pain In contrast to CBT, which involves cognitive restructuring and challenging thoughts, Acceptance and Commitment Therapy (ACT) emphasises observing thoughts and feelings as they are, without trying to change them. ACT stresses that even when a person is experiencing chronic pain; it is the struggle with pain (e.g., the client’s pain catastrophising) that causes suffering. For this reason it is fundamentally important that the person continues to behave in ways that are consistent with their valued goals and life directions despite their experience of pain. Within the ACT framework, pain is seen as an inevitable, and in some cases, a necessary part of living that can be accepted. The extent of a person’s suffering is directly related to the extent to which the person believes and acts on their pain related thoughts. The aim of ACT therapy is to help the client develop greater flexibility in the presence of thoughts, feelings and behaviours associated with pain. Mindfulness is a key element in ACT therapy for chronic pain. By practicing mindfulness strategies, the client can learn to be the observer of the pain, rather than an active participator. This observer perspective is also helpful in maintaining neutral thoughts when unhelpful thoughts and feelings arise. Chronic pain can become debilitating, demotivating and tiresome for those affected. It can wear people down. In the ACT model, value illness is a condition where a person puts valued activities on hold in order to reduce pain symptoms. Over time, this can affect the person’s relationships, social activities, work satisfaction, and general meaning of life. This severely compromises a person’s self-efficacy. ACT incorporates exercises that help a person identify their values, and identify how near or far they are living in accordance with those values. The therapy helps the client specifically identify which values are compromised by their activities to avoid or manage pain. It helps them devise strategies for managing pain, whilst maintaining their values, and thus increasing PSE.


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Profile for Independence Australia

Inform Magazine Issue 29 - Summer 2020  

Inform Magazine Issue 29 - Summer 2020  

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