Winter 2019
What will your legacy be?
MEDICINAL CANNABIS & SCI | SPASTIC QUADRIPLEGIA & NEUROMOVES
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CONTENTS 02 03 04 06 08
From the CEO From the President News Fundraising What will your legacy be?
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Medicinal cannabis in Australia Seeking the possibilities Daily living: Scuba therapy Policy and advocacy Regional round up
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Technology Review: Home, Hope and Helen Information & resources Calendar
accord is a publication of Spinal Cord Injuries Australia ACN 001 263 734 Incorporated in NSW Head office: 1 Jennifer Street, Little Bay NSW 2036 Phone: 1800 819 775 Fax: 02 9661 9598 Email: info@scia.org.au Website: www.scia.org.au
Designer Shauna Milani Sub Editing Proof Communications 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
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n this edition we provide you with an overview of our newly implemented bequest program. Leaving a gift to Spinal Cord Injuries Australia in your will is a meaningful way to give back to the spinal cord injury (SCI) community. It provides the opportunity to make a significant gift that you may otherwise not find possible during your lifetime. We are very lucky to have a very generous supporter, Alf, who is donating his accessible home in Bunbury, Western Australia so that it can benefit other people who’ve experienced an accident or SCI.
office in the same plaza where we provide individual advocacy and plan management and support coordination services. These services are continuing to grow and we are pleased that our new office offers clients a space for private and confidential conversations. We also have a NeuroMoves service operating in Lismore which continues to expand its operating hours. We are proud to be offering such extensive services in a regional area as we know there is a strong need for such support and that the issues for those living in the country can be very different to those of people living in metropolitan regions.
SCIA’s core mission will always be to support people with SCI and their families and friends. However, we also provide support to people with other disabilities. In this winter issue we have a story regarding a client with cerebral palsy and in future articles we will be highlighting the support and services we provide to those who may suffer from a stroke or acquired brain injury or multiple sclerosis. Our advocacy services in particular provide support to a very broad range of clients so I encourage you to think of SCIA if you, or a friend or family member, might need assistance.
I hope you enjoy this issue and look forward to updating you all on our plans for services to be extended into Western Australia and the ACT in the next edition of accord. ▪
You will also notice that we have relocated our Alstonville office in New South Wales. We now have a combined
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FROM THE PRESIDENT
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uddenly it’s winter! Almost overnight summer has disappeared and I can’t seem to get warm. But as a quadriplegic, getting warm could be the least of my worries when I hear the influenza predictions for the upcoming season. Flu experts (whoever they may be) have predicted that 4,000 Australians will die this year from influenza and there has already been three times the number of confirmed cases than for the same period in previous years. We are apparently destined for a flu outbreak greater than that of 2017. I for one have not yet availed myself of the free vaccination I’m entitled to, but it is something I fully intend to do. 2017 was the last time I was hospitalised and it was for pneumonia. It was also the last year I was tardy in having a flu shot. Lesson learnt. Quadriplegics are particularly vulnerable to respiratory illnesses due to limited lung function. I can only implore you all to take advantage of this fully funded preventative measure. It is definitely on my to-do list for next week! As a complete change of subject, I would like to remind everyone that Spinal Cord Injuries Australia (SCIA) is a for-purpose organisation. We provide a number of programs free of charge, including Peer Support, our Information and Resource Library, our online Community Forums, and our Employment and Advocacy services.
Unfortunately, we know only too well that fate is fickle, and a spinal cord injury (SCI) is not discriminatory. It is certainly a life changing incident that can affect absolutely anyone. So, no matter what your circumstances, or networks, think about how you might be able to make a difference. It could be a small regular donation, a gift in support of a project, leaving a legacy by gifting in your will, an introduction to a community group with a connection to SCI, or a business contact needing some work completed by our Social Enterprise (especially, but not limited to, data entry and market research). Finally, we have an article in this issue of accord about an incredibly generous donation from one of our members. He has bequeathed SCIA a fully accessible house in the picturesque area of Bunbury, approximately two hours’ drive south of Perth. I for one am very touched by this gesture of solidarity and support from one member to our many others. Thank you! Until next issue… by when we all will have had our flu shots! ▪
Funding is becoming increasingly difficult to secure and keeping all our services sustainable is an ongoing challenge. If you would like to help make a tangible difference, please get in touch with our Fundraising team to discuss the myriad options that might suit your circumstances.
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NEWS
Coalition’s pre-election promises
Road Safety Week 2019
On 18 May, Australians went to the polls to vote in the latest Federal election which saw a Coalition government re-elected to lead us over the next four years. Before we voted, the National Disability Insurance Scheme (NDIS) became a significantly emotional electoral issue, with long-held concerns for people with disabilities and their families who feel trapped in underfunded plans, stuck in slow review processes and hampered by inadequate staff training and knowledge. This prompted the Coalition’s then Social Services Minister, Paul Fletcher, to announce major changes in an attempt to give participants more certainty over their plans and force the National Disability Insurance Agency to make decisions more quickly. Changes include: • P eople with disability will have a single point of contact with the NDIS and can choose to be on a longer NDIS plan of up to three years if their disability is stable. • E xpansion of the NDIS community connectors program to support and assist hard to reach communities – including Indigenous Australians, culturally and linguistically diverse communities and ageing parents of children with disability – to navigate
Over a third of traumatic spinal cord injuries are due to vehicle crashes.
the NDIS and get the services they or their children need. • I ntroduction of a new NDIS Participant Service Guarantee from 1 July 2020. This guarantee will set new standards for shorter timeframes for people with disability to get an NDIS plan and to have their plan reviewed, with a particular focus on children and participants requiring specialist disability accommodation and assistive technology. Prime Minister Scott Morrison pledged to make the NDIS a priority. He appointed Liberal MP Stuart Robert Minister for the NDIS after the scheme was taken out of the social services portfolio. More than 240,000 Australians are currently covered by the NDIS, with 220,000 expected to be covered by the time the time the NDIS is completely rolled out.
Check out our new gym in Penrith SCIA is excited to announce that our new NeuroMoves gym has a fresh new look in Penrith at 201 High Street. Now in a much larger space, new equipment has been added to cater for a broader range of exercise services offered by NeuroMoves. NeuroMoves delivers exercise programs tailored individually for people with physical and neurological disabilities to help improve mobility, function and independence. These exercise services range from highly specialised and intensive locomotor training programs right through to casual gym style programs enjoyed in a group. 4
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George and Abbey from our Penrith NeuroMoves Gym.
Open Monday to Friday from 9am to 5pm, call 1800 819 775 to book a free initial assessment valued at $297, or visit www.scia.org.au to check out other locations and programs available.
Prevention has always been part of our mission and this year, SCIA became a Silver Partner of National Road Safety Week, which was held 6–12 May. We marked the occasion by creating a short video focusing on serious injury, specifically targeting young drivers. Eighteen-year-old Jarrod Emeny agreed to participate to help raise awareness amongst his peers. In July 2018, Jarrod was driving his ute into town for a rugby game and, whilst approaching a shoulder on a hill, turned the corner and felt the back of his vehicle lose control. As he slowly applied the brakes he blacked out. Jarrod came around long enough to discover he had crashed into a tree, before losing consciousness again. The next time he woke up he was in the Spinal Unit at Sydney’s Royal North Shore Hospital. The reason for Jarrod’s car inexplicably accelerating is unclear, as are exact details of the crash itself. He says that he instantly knew he’d become a paraplegic and, thanks to being surrounded by other people with disabilities, he felt ready acceptance of the situation. Since his accident, Jarrod has gone from strength to strength on his way to completing his HSC, learning to drive his modified car and getting into wheelchair basketball. Team members of SCIA’s Peer Support service have been instrumental in getting Jarrod back on track, giving him invaluable advice gained through their own lived experiences. They’ve also been busy mentoring Jarrod as he participates in the NSW Wheelchair Basketball team, supporting his dreams of becoming professional and representing Australia in the upcoming 2020 Paralympics.
NEWS
Have you visited the new SCIA website lately? Why the change? Analysis of the existing Spinal Cord Injuries Australia website told us that the huge amount of valuable information therein could be better organised to make navigation easier. It also told us that the old site was too busy, requiring visitors to read too much to find the right information. Streamlining the design and arranging the information differently would make a big difference. So, hopefully, you’re already finding that our new website is cleaner, simpler and more intuitive. If you haven’t visited it yet, then why not take a look at www.scia.org.au?
You can find it under the Resource tab in the orange navigation bar. All our services (National Disability Insurance Scheme, Exercise, Advocacy, Peer Support, Accommodation, Employment) are located right there on the home page, and will change from blue to orange when you hover over or make your selection. We’ve also included several videos. Have you seen the latest from Peer Support and NeuroMoves? There are even more on our SCIA YouTube channel and you can easily subscribe if you’d like to be notified
when new ones are added. The SCIA website has also been optimised for mobile devices, so it’s easier to scroll and navigate on your smartphone or tablet if you’re not using a laptop or desktop computer. It’s also fully searchable and our 1800 number and email contact address are always visible at the top and bottom of each page. If you have any constructive suggestions to make, then feel free to use the feedback form on the website, or post on the Community Forum.
New features The big news is the addition of the Community Forum! This is your place to seek advice, share information and generally express yourself. Anytime, anywhere. It’s easy to register and you can post right away. Share this great new resource with others, including carers, friends and family. We’ve also made one of SCIA’s hidden gems – our Resource Library – easier to find. This is a goldmine of information on a vast array of topics from across Australia and around the world. It’s regularly curated with searchable subject matter by our resident qualified librarian.
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Save the date: Spinal Cord Injury Awareness Week in September Spinal Cord Injury Awareness Week will be held from 2 – 8 September, to raise awareness of the daily lives of people who have a spinal cord injury. World Spinal Cord Injury Day forms part of Spinal Cord Injury Awareness Week, and will be held on 5 September. Keep an eye on www.scia.org.au for activities and events that you can be part of, or check out www.sciaw. com.au for further information. www.scia.org.au 5
FUNDRAISING
Star fundraisers
The Victorian Team Trivia Championships: Melbourne, 22 November Ever wondered what to do with all the weird and wonderful facts that you have in your head? From 1980s pop to cricket captains through the ages, now is your moment to shine! Put your general knowledge to the ultimate test and enter a team in the inaugural Victorian Team Trivia Championship! Join in the fun and battle it out against some of trivia’s finest minds to be crowned Victorian Team Trivial Champions. It promises to be a fantastic night and all money raised on the night will go towards Spinal Cord Injuries Australia (SCIA).
Details: We’re delighted to have more star fundraisers to celebrate in this issue! First up is Ben (pictured above), who braved the cold and took part in the HBF Run for a Reason in May. Ben fractured his C4 and C5 vertebrae back in 2017 and wanted to raise money for SCIA to help improve the recovery of people with a spinal cord injury (SCI). Next in line is David, who in early June took on the more unusual Glow Worm Marathon in Wolgan Valley, NSW. During this gruelling event David ran up steep mountain trails and skirted the cliff line before entering the glow worm cave. David’s sterling efforts have raised money for much needed equipment in SCIA’s NeuroMoves gyms; in particular, a functional electrical stimulation cycle. David has seen firsthand the positive impact this piece of equipment had on a boy with a C4 incomplete SCI and would love more people to benefit in the same way. A big thank you to all our fundraisers – we simply could not carry out the work that we do without you! If you’d like to support SCIA in any way please contact us at info@scia.org.au or on 1800 819 775.
Where: Dorset Gardens Hotel, Croydon, Melbourne When: Friday 22 November Time: 7-7.30pm to 10.30pm Price: $300/table of 10 Tickets: Buy them here https://victorianteamtriviachampionship.eventbrite.com.au For more information call 1800 819 775 or email info@scia.org.au
Alex runs west for Penrith A big thank you to Alex and his family for taking part in Run West at Eastern creek, Western Sydney. Alex suffered a spinal cord injury two years ago, at the age of just 15, from a bicycle accident. This has left him a C3/C4 quadriplegic. He has been pouring his heart into NeuroMoves to build up his strength and his dedication has really paid off. When Alex took part in Run West, he was able to smash the goal he set for himself and walk three kms – an amazing achievement. Alex’s mother and father have also been training hard and completed the 12km run along with Abbey, Exercise Physiologist from NeuroMoves Penrith. Alex and his family are raising money for a treadmill at SCIA’s NeuroMoves site in Penrith, to enable clients to take part in locomotive training. This will save people having to travel long distances to other sites. We are extremely grateful for all their support and delighted at the progress that Alex has made.
Alex with Abbey from NeuroMoves Penrith (left).
Join our community fundraising events If you feel inspired to take on a challenge and raise much needed funds for SCIA, we would love to have you on our team. We have events all year round! We will support you with the tools and tips you need to raise money, and help you create your online fundraising page so you can ask your friends, family and colleagues to donate to support you. It is simple and easy to do, and means you can focus on the task at hand – preparing yourself for your event! For more information call 1800 819 775 or email info@scia.org.au 6
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Upcoming events near you: The Sun Herald City2Surf (Sydney) 11 August Chevron City to Surf (Perth) 25 August Blackmores Sydney Running Festival 15 September Melbourne Marathon Festival 13 October
Do something amazing this year and join team SCIA
Happy clients using the new equipment purchased with Big Day Back proceeds.
Whether it be the SMH Half Marathon, City2Surf or Tough Mudder – run, swim or cycle your way towards helping us overcome barriers to independence for people with spinal cord injuries.
Visit scia.org.au for some inspiration and get involved this year. scia.org.au | 1800 819 775 | info@scia.org.au
COVER
What will your legacy be? Leaving a gift in your will can change lives
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ince 1967, many generous individuals from all walks of life have chosen to leave gifts in their wills to Spinal Cord Injuries Australia (SCIA), making it possible to change the lives of people living with spinal cord injury (SCI) and other types of neurological and physical disabilities. You don’t have to be wealthy to make a difference. Gifts in wills, both large and small, play a major role in the ongoing available funding of the vital services we provide. With these welcome funds, SCIA can help to increase the independence, mobility and confidence of those who otherwise would have nowhere else to turn. By making a gift to SCIA, you’re showing your commitment to ensure people who are affected by an SCI and other neurological and physical disabilities won’t be isolated. Your generosity will mean they can receive our valuable help and support which is often so desperately needed.
Types of gifts There are several different ways you can make a gift in your will, including: • Residual gift • Percentage of your estate • P ecuniary gift – a specific amount of money • Fixed specific gift
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No surprises We suggest you seek advice from your solicitor when drafting or updating your will to include a gift to SCIA. It’s also a good idea to involve your family so they know what to expect and to avoid unnecessary complications. Once family and friends are provided for, please consider leaving a gift in your will to SCIA. It really could make the world of difference to someone in need.
Making your will To make it even easier for you to make a gift, the correct wording can be found on our website www.scia.org.au. For more information or for a confidential discussion, please contact SCIA on 1800 819 775 or info@scia.org.au.
COVER
Alf's story:
Life changed, but I am still ME… Words: Pauline Keyvar
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arnet Lane prefers to be called ‘Alf ’, after Alf Garnett, the cheeky and much-loved lead character in the popular 1960’s British sitcom, ‘Till Death Us Do Part. 13 April 2015 was a normal Monday morning when Alf left for work in the small south Western Australian township of Burekup, where he was employed as an asphalt paver operator for a road paving company. Little did Alf know then that his life was about to change forever… The road repair job that day involved standard bitumen maintenance at Collie River Road, something that Alf had done hundreds of times. Trouble struck when the paver rolled down a steep embankment, leaving it hanging over the edge of a drain and ejecting Alf three metres into the collected rainwater below. His workmates quickly came to assist but it took 10 fire fighters over an hour to stabilise Alf and to get him back up to the road. Alf was in a critical condition with a suspected spinal cord injury (SCI), air-lifted from Burekup to Royal Perth Hospital, some 170 kms away. “I don’t remember much about the accident today,” says Alf, “but every now and then some bits do come back to me.” During four long months in hospital, Alf desperately tried to communicate but it was thought he was unable to speak. Well known for liking to “have a chat”, Alf found it extremely frustrating but eventually learned to speak again with the aid of a “trach tube” – a tube inserted through a hole in his windpipe. After leaving hospital, Alf spent a further 12 months at the Fiona Stanley Rehabilitation Unit in Perth in preparation for his new life. All up, it was two years of doctors,
Alf with his family.
lawyers, institutions and learning to live again. Alf candidly admits, “Without the encouragement and support of the staff at the hospital, the rehab unit and the ongoing love and support of my family, I would not have got through.” After meeting many people, some who’d become institutionalised and others who had no other choice but to live in a nursing home, Alf realised this was not the way forward for him. “After all that time in hospital and rehab, I was starting to go stir crazy and needed to get out. One day my daughter Shantel and son-in-law David came to the rescue and broke me out for the day!” Fast forward to 2019, now Alf lives in the sleepy beachside suburb of Dalyellup, 20 minutes from Bunbury, the gateway to the Margaret River. “I love to be at my home with my dog Patches,” says Alf. “And, thankfully, I do have somewhere I can call home.” Alf purchased his block of land at Dalyellup Beach in 2017 and from his wheelchair personally oversaw the building and fit out of the home that would meet all his specific needs. Because of his spinal cord injury
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accessibility is essential, the house has wide doorways for both wheelchairs and beds, lower benchtops, a flat garden and a big garage to house Alf ’s car. Alf invited us to “come see” his home. We were warmly greeted by the ever-faithful Patches and David, who lives close by and was there to care for his father-in-law. The front of the house looks just like any other suburban home. Once inside, there’s a wonderful horse mural on the wall, created for Alf by one of his carers. “My house has been specifically designed and built for me,” says Alf. “It’s ideal for a family to come for a holiday or could be used as shortterm accommodation when transitioning from rehab to home. “I’ve left the house in my Will to Spinal Cord Injuries Australia (SCIA) so that it can benefit other people who’ve experienced an accident or spinal cord injury,” he continues. “I met people at the Fiona Stanley who haven’t been as lucky as me and don’t have enough money to build a place like this; their future is so uncertain. My home is a little bit of heaven that I can pass on to someone who needs it as much as I did.”
“I’ve left the house in my Will to SCIA so that it can benefit other people who’ve experienced an accident or spinal cord injury” Alf is a real “people person” with four children and seven grandchildren. He also has a positive “can do” approach to life and enjoys getting out in the car with a carer or taking off to the shopping centre in his wheelchair. Alf acknowledges that he still finds it hard that people he’s known for a long time haven’t come to see him since his accident, and that it’s often difficult when people look the other way. Yet, he remains philosophical, accepting that these are typical of the hurdles he has to face when sometimes people can’t or don’t want to understand. But despite it all, Alf remains resolutely cheerful and with a strong “c’est la vie” attitude, happy to declare proudly, “I am still me!” We are grateful to Alf for sharing his story and for his decision to leave a gift in his will to SCIA. For further information on how you can leave a gift in your Will to SCIA, please email us at info@scia.org.au or call 1800 819 775 for a confidential discussion. ■ 10
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Top: Alf and emergency workers at the scene of his accident. Middle: Alf's home he is gifting to SCIA. Bottom: The mural painted for Alf by one of his carers.
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IN PROFILE
Medicinal cannabis in Australia: The current state of play for people with spinal cord injury Words: Shirley Carpenter and Greg Killeen
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any people with a spinal cord injury will tell you that muscle spasticity and pain are constant companions. And the pain isn’t just your common, garden-variety cut-yourfinger type of pain. It’s most often neuropathic (nerve) pain. It can be stabbing, prickling, burning; it can be chronic, debilitating and require strong, potentially addiction-forming analgesics to enable a person to have a better quality of life.
What’s the issue with taking strong analgesics for pain relief? Strong analgesics can have many negative effects on the body such as constipation, tiredness or fatigue, dizziness, drowsiness, hallucinations, nausea, increased sweating, feeling sad or
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depressed and, over a long period of time, can cause damage to the stomach and internal organs. The body gets used to the drugs so that they eventually become less effective, meaning stronger and stronger doses are required to achieve the same level of pain relief. People can easily get trapped in an addiction cycle which they may have great difficulty breaking. Addiction to analgesics is a growing problem and people are dying unnecessarily as a result. Some 1,045 Australians aged 15-64 died of an opioid overdose in 2016, according to a report released by the National Drug and Alcohol Research Centre at the University of NSW in Sydney. The majority of these deaths (76%) were attributable to pharmaceutical opioids.
IN PROFILE
So how can medicinal cannabis help? When it comes to treating pain, the use of cannabinoids (CBDs) extracted from cannabis can work in different ways. CBDs used for medicinal benefits are different to tetrahydrocannabinol (THC) which causes the euphoric “high” when cannabis (marijuana) is consumed through smoking, vaping or eating. For some people, CBDs shut down the sensation of pain. In other people, they help them to disassociate and relax so that they’re not so aware of the pain, enabling them to get on with their day. CBDs act as a kind of circuit breaker, reducing the abnormal neuron activity that’s behind neuropathic pain. A CBD binds itself to CBD receptors in the body that are an important part of the nervous system. Once in place, they block the release of neurotransmitters that have been found to trigger pain.
Research There’s a growing body of evidence supporting the use of medicinal cannabis for the treatment of myriad conditions. A systemic review of the benefits and adverse effects of CBDs concluded moderate quality evidence to support their use for the treatment of muscle spasms, chronic pain and spasticity.
How is medicinal cannabis being prescribed in Australia today? There is currently no predetermined list of conditions for which a cannabis-based medicine can be prescribed in Australia. However, the Therapeutic Goods Administration (TGA) states that medicinal cannabis is generally being prescribed for conditions including epilepsy, multiple sclerosis, chronic pain, HIV/AIDS, chemotherapy-induced nausea, PTSD and anxiety and depression. But access to medicinal cannabis is far from simple. To obtain it, people can’t simply visit their doctor, report they have chronic neuropathic pain and – voila! – expect a prescription to be immediately written. There are currently two main avenues in Australia to obtain medicinal cannabis.
the product, the seriousness of the patient’s condition, details of previous treatment and reasons why an existing medication can’t be used instead. The application must also include safety and efficacy data to support the proposed use of the product. This may include references to clinical trial results and peer-reviewed data, details of intended monitoring for adverse events and patient response to treatment. The second way is through a doctor who, as an Authorised Prescriber, is approved to prescribe medicinal cannabis to their patients without further TGA approval. To become an Authorised Prescriber the doctor must have the training and expertise appropriate for the condition being treated and the proposed use of the product, be able to best determine the patient’s needs and be able to monitor the outcome of the treatment. At the time of writing there are only 57 medical professionals registered as Authorised Prescribers in Australia.
Medicinal cannabis should be easier to access Apart from the onerous application process, another reason people might be finding it challenging to obtain medicinal cannabis is that knowledge amongst medical professionals about the benefits of CBDs is low. A new study from the Queensland University of Technology reports that although medical professionals broadly supported the idea of medicinal cannabis, they lacked information and the confidence to prescribe it, wanting more information before they did so. Many people would benefit from easier access to medicinal cannabis from their regular doctor. But until this happens the message is clear – do your research so that you’re well informed when you visit your doctor and don’t take no for an answer. If your doctor is reluctant, ask them for a referral to a medicinal cannabis clinic. Such clinics have medical professionals on board who will assess your condition and make a decision about whether to apply for CBD-based pain relief on your behalf. Visit the SCIA Resource Library http://library. scia.org.au/cgi-bin/koha/opac-main.pl to read further articles and studies. ■
The first is through the Special Access Scheme (SAS) category B. Via this method, a doctor makes an application to the TGA which includes the patient’s diagnosis and indications for which the product is sought. The application requires a thorough clinical justification for the use of
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IN PROFILE
Tom Trewin and his family at Lake Louise, Canada in 2018.
Seeking the possibilities Words: Susan Wood
Tom Trewin has travelled a lot in his life: Las Vegas, Bali, and Singapore. Once, he even flew into the Grand Canyon by helicopter to have dinner! For Tom, travel and adventure have been made all the more possible through his strong support network of family and friends.
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om was born prematurely at 24 weeks and has spastic quadriplegia, a subset of cerebral palsy affecting all four limbs. Over the years, Tom’s disability has taken a physical toll on him. His biggest change has seen him go from taking small steps and standing to mobilising fulltime in his wheelchair. “My hips became really painful and I had a lot of surgeries. I can’t stand now. Not necessarily because medically I can’t, I just no longer have the strength to do it.” However, Tom hasn’t been deterred from seeking out other opportunities. At 20, he’s experienced more than most, and the support from his family has been immeasurable. “I have been lucky enough to have some really good people to help me do what I want to do,” he says.
IN PROFILE
Tom had always dreamed of working for Hawthorn Football Club when he finished school. In 2009, he became very sick and had to stay at home. Through a connection from a friend, Tom had a visit from former Hawthorn player Brendan Whitecross, former Hawthorn Captain Jarryd Roughead and their operations manager. That meeting started a journey with the club that led to Tom hanging out with the team in their rooms on game days, eventually volunteering every Tuesday to hand out footballs and provide support. “We have lunch together and talk about football. I have the same uniform as everyone – it’s really cool.” Tom has been attending SCIA’s NeuroMoves in Melbourne since 2018. His aim is to improve his hand mobility to steer his wheelchair and develop better core support strength to sit up independently. “My chair driving is still not fabulous, but I can now sit on the toilet without being held which is a pretty massive change. I am definitely fitter and stronger.” Strength and fitness aside, for Tom the best part of NeuroMoves has been the socialisation. “It’s made me more confident to talk to people I don’t know,” he says. “Last week, I was talking to a lady from Israel and she asked me a lot of questions. I answered them easily whereas before I would have had trouble even getting the words out.” Tom’s mum, Louise, agrees and says that Tom’s volunteer work at Hawthorn and attending NeuroMoves has made a long-lasting impact on his self-esteem. “He’s developed a network of people outside his family, and I think that’s really important,” she says. One of the greatest challenges for Louise has been finding programs for Tom where he can socialise with other people who have physical disabilities. NeuroMoves has been one of the few opportunities where Tom can easily engage with other people. For Louise, persistence is key. Parenting a child with a disability means fighting for what they need and focussing on the things they can do, rather than those they can’t. “People often say ‘Oh, you wouldn’t change him!’ which is pretty stupid really – I would change him in a heartbeat! Not for us, but for him!” Louise says that whilst Tom’s life is fulfilling, it’s also exceptionally painful at times and highly challenging for him. Tom’s ability to be
Tom’s volunteer work at Hawthorn and attending NeuroMoves has made a long-lasting impact on his self-esteem. so tolerant of his situation has been the most admirable part of raising him. “He’s been through so much in his life,” says Louise. “And yet he never complains. He just takes every day as it comes. He is appreciative of the opportunities he has and doesn’t dwell on the things he can’t change.” Tom says that the opportunities in his life are thanks to his family’s determination to make whatever he wants to do a possibility. Louise says that it is really a matter of responding to his needs as they arise. “We’ve been very fortunate to have had very good support through care agency Scope Disability Services,” she says. “When the National Disability Insurance Scheme rolled into our area we received funding for Tom’s therapies and carer support but getting equipment has been challenging. You have to keep badgering and badgering. It can take years.” Louise’s hopes for Tom include getting him back on his feet, literally. A hope that Tom shares too. “I want him to be able to access and do the things that he would like to do. I would love for him to have some sort of job, but I recognise that this can be difficult with his level of disability.” When not attending NeuroMoves or volunteering at Hawthorn, Tom spends his time watching the cricket, hanging out with his family, camping and playing Xbox. Recently, he received a specialised controller that means he can use the Xbox himself. “I can play some games without help, which is good,” says Tom. Tom also attends action observation therapy for hand therapy, working on his thumb extension so he can hit the controller with greater ease. “I’m pretty happy with life at the minute,” he declares. In August, Tom will be travelling with his family to Rome, before heading to London to watch the Ashes. “I have wanted to do this since I was about 14, and this year, I’m doing it!” he says. ■ www.scia.org.au
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DAILY LIVING
Scuba diving - discover the benefits and have fun!
Y
ou mightn’t have thought scuba diving was something you could do after your spinal injury, but there are many opportunities opening up around Australia for you to participate. Not only is scuba diving a fun activity, studies show it can contribute towards your physical wellbeing and mental health. A John Hopkins University School of Medicine study into the benefits of scuba diving saw a group of 10 people with paraplegia, accompanied by nine able bodied “buddies” acting as a control group, undertake four days of testing. Before the dives a series of neurological and psychological tests on all 19 participants were conducted including spasticity, motor control, and sensitivity to pinprick and light touch.
exhilarating; there’s nothing like it. We call ourselves life changers because once people experience it, they get this huge sense of achievement. So often people with disabilities get negative messages from others about what they can’t do.” So where can you go scuba diving around Australia?
The Scuba Gym (www.thescubagym.com. au) operates in Woy Woy, Sydney and Newcastle. Instructor, Lyndi Leggett, conducts Scuba Therapy for those with special needs and spinal cord injury, improving their muscle tone, pain, spasms and mental health and claims that in an antigravity environment, people can do incredible things. “For many people, scuba diving is massive in itself and helps them to push through the workout, to have The results were quite dramatic. Researchers reported an average 15 per cent self-belief and start the healing process in a different way.” reduction in muscle spasticity, an average 10 per cent increase in sensitivity to light “This is the best therapy I have ever touch and five per cent to pinprick. In received – I’ll be coming weekly to scuba some individuals the improvement in tone, therapy.” Lincolne (quadriplegic). sensation or motor function was between 20 and 30 per cent. The control group Ash Payne of Perth’s Dive Unlimited experienced no neurological changes. was inspired to take up DDI instructor training after a wheelchair user watched Researchers also found an average decrease a dive group and said, "I wish I could do of 15 per cent in obsessive compulsive that!” Ash says diving is the ideal way to disorder symptoms in those divers with combine exercise and fun. “Diving for a paraplegia, a similar decrease in signs whole day may mean only two hours in of depression, and an overall decrease the water. Otherwise, you’re chatting on in mental problems using a validated shore, having a pre-dive coffee, or a postpsychological assessment. dive beer, so it’s a very social hobby.” In another study, an evaluation of Sargood on Collaroy has run two courses Deptherapy UK showed significant by Snorkel and Dive Safari Swansea therapeutic benefits, particularly for called RAIDaptive scuba diving. One ex-military amputees experiencing paraplegic participant enthused, “It’s anxiety and/or chronic psychological really freeing, exploring something adjustment disorders, notably in terms totally different to normal day-to-day of improvements in social dysfunction, life.” Sargood’s program manager is symptoms of depression and chronic keen to provide guests with activities pain relief. for developing skills and knowledge. To find out more, contact Sargood or Mark Slingo of not-for-profit Disabled Snorkel and Dive Safari Swansea. (www. Divers International (DDI) says that for snorkelanddivesafariswansea.com.au) people who use a wheelchair, “Diving is
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DAILY DAILY LIVING LIVING
Up Townsville way, Remote Area Dive (www.remoteareadive.com.au/scubilityprogram) offers the Scubility Discovery Dive, a fully-supervised introductory dive specifically designed for physically disabled people. Their Scubility Open Water Diver is an entry-level certification course teaching disabled students skills in open water dives.
Scuba therapy at The Scuba Gym, Woy Woy.
Bob Staddon, a former Australian Navy able seaman became a quadriplegic 40 years ago after snapping his neck at a water park. He’s since logged 1,200 dives, becoming Australia's first quadriplegic certified master diver. So, why not give scuba diving a try? Who knows where it might lead! For more information on the John Hopkins University School of Medicine study visit http://bit.ly/scubastudy â–
www.scia.org.au 17
POLICY & ADVOCACY Squeaky Wheel
Contributors:
Greg Killeen, Senior Policy and Advocacy Officer (pictured above), has been working with Spinal Cord Injuries Australia (SCIA) since July 1991, initially as an Information Officer before joining the Policy and Advocacy team in 2009. He is also actively involved in a number of community, disability and government advisory committees as an individual or as a representative of SCIA.
NDIS and accommodation options
The National Disability Insurance Scheme 2. The SDA Reference Group is expected (NDIS) does not purchase or supply homes to have 8 meetings over 18 months for NDIS participants. However, it does and intends to deliver the following give $700 million every year to the NDIS outcomes: Specialist Disability Accommodation a) SDA policy objectives and intent are (SDA) as an incentive for domestic appropriate, allow choice and control property development and to help increase for participants and facilitate market the accessible accommodation options for development; people with disability. NDIS participants looking to obtain accessible accommodation can apply for SDA funding in their plans. If approved, they’ll receive a funding allocation which will enable them to search for and secure the SDA that best meets their needs. Funding allocation is linked to the type of property involved e.g. unit, townhouse or freestanding home, the number of bedrooms, any associated tenants, and where it’s located. Greg Killeen, SCIA Senior Policy and Advocacy Officer, lodged a successful Expression of Interest application and is on the NDIS SDA Reference Committee. The Committee has the following terms of reference:
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.
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f) I nformation related to SDA including efforts to clarify and consolidate current information.
The Specialist Disability Accommodation (SDA) Reference Group will support the development of the SDA market, choice and control for participants, and the longterm viability of SDA investments under the National Disability Insurance Scheme (NDIS). 1. The group will discuss and provide feedback on: a) I mplementation of SDA policy and whether the intended outcomes are being achieved;
b) S DA policy, practice and processes are improved with input from participant and sector expertise; c) Th e NDIA is well informed about issues and opportunities for the SDA sector; and d) M arket development is facilitated through the availability and consideration of sector feedback. 3. Th e SDA Reference Group will support a growing and competitive market with innovative supports. The outcomes will assist in the achievement of the following goals: a) A n available market of supports and services; and b) Provider sentiment and confidence.
Medicinal cannabis (marijuana) There are many people with a spinal cord injury (SCI), as well as those in the general community, who are adversely affected by health and medical conditions, which aren’t adequately treated by over-thecounter and prescribed medications.
Many individuals seek the use of alternative therapies and medications, including medicinal cannabis. However, obtaining accurate information about i. provider capacity development; the effectiveness and access to medicinal ii. availability of market data, including cannabis can be quite confusing. To National Disability Insurance help the SCI community become better Agency (NDIA) release informed SCIA have written an article of supply and demand data; and about the current situation in Australia in regard to medicinal cannabis in this iii. any other issues observed; edition of accord”. c) Pricing assumptions; SCIA P&A is very interested to see how d) Identification and promotion of we can contribute to the conversation innovation and best practice; within the health and SCI community around medicinal cannabis. This includes e) Participant experience of SDA getting the issue on the agenda of the NSW processes, market and housing Health’s Agency for Clinical Innovation’s outcomes; and b) M arket development matters including:
POLICY & ADVOCACY
Squeaky Wheel
Clinical Development Committee and building the body of research through advocating for clinical trials in the context of neuropathic pain and/or spasticity in SCI. For further information, read the article titled “Medicinal cannabis in Australia – the current state of play for people with spinal cord injury” in this edition of accord.
Access to venues and ticketing In late 2018, SCIA P&A attended a meeting at NSW Parliament House to discuss issues relating to the barriers for people with disability in purchasing tickets and attending entertainment venues. The meeting was hosted by Yasmin Catley, MP, Member for Swansea and Liesl Tesch, MP, Member for Gosford and attended by people with disability, their organisational representatives, venue owners and managers, as well as the major ticketing agencies. Although much was discussed, a main issue was the inability to easily book wheelchair spaces and companion seats online. Currently, tickets and companion seating must be booked over the phone or at the venue box office – both options which have limited opening hours and often involve long waiting times. As a result, people very often miss out on tickets to events. Another issue was the inequity of some venues having accessible spaces and companion seating only located in the higher-priced A category ticket price areas, leaving people with disability without the option to choose seating in a cheaper-priced B or C category area. This meeting was only the start of trying to get these issues addressed. However, Ms Catley stated there are also opportunities to address the matter through: rivate member’s bills – changes or • P tweaks to the legislation that can be proposed in parliament • Speeches to parliament • P etitions – in a specific format, on paper. Ms Catley can provide guidance on how to set these up and have them checked by the Petitions Office if needed. A minimum 500 signatures will get a response from the Minister on the record.
NSW Parliament returned on 7 May and SCIA P&A will pursue another meeting to advance this issue that affects many people with disability, their families and friends.
Sydney Metro As a member of the Accessible Transport Advisory Committee (ATAC), SCIA P&A has provided feedback and advice on a number of the Sydney Metro accessibility services and facilities being developed. ATAC was also invited to provide feedback on a full-scale Sydney Metro train station prototype at Rouse Hill during the early planning stages in February 2016. At a meeting on 10 April, ATAC was informed that the new Sydney Metro rail service would start operating in May and the service did indeed commence on 26 May. At that meeting, SCIA P&A requested ATAC be invited for a site visit of the Sydney Metro train stations and carriages prior to its public opening to highlight any access issues that could hopefully be rectified prior to service commencement. SCIA P&A had been unable to accept invitations to two previous open days. Subsequently, SCIA P&A has been informed that the Tactile and/or Directional Ground Surface Indicators installed at the Sydney Metro train stations to guide people with vision impairment are incorrectly laid and direct people to the car park. Although ATAC members raised the issue it is understood that the fault will not be rectified. www.scia.org.au 19
POLICY & ADVOCACY Squeaky Wheel
◀ continued from page 21 SCIA P&A has since discovered that Transport for NSW’s (TfNSW) Social Policy requires all proposed transport services to consult with ATAC as part of overall public transport planning, development and implementation. SCIA P&A will seek to clarify ATAC’s role and responsibilities and endeavour to have ATAC play a more active part in ensuring all current and proposed public transport is fully accessible to all people with disability. The Sydney Metro uses driverless trains and provides services between Chatswood and Rouse Hill on Sydney’s northern side. The good news is that access to carriages is level with the station platforms so people with mobility aids do not need to use portable ramps to enter or exit the trains.
Disability Standards for Accessible Public Transport Review The Disability Standards for Accessible Public Transport (DSAPT) is reviewed every five years. It is currently in its third review and SCIA P&A made an update enquiry in mid-April. We received a response on 6 May from the Federal Government’s Disabilities Transport Access Secretariat stating that because the government was in caretaker mode due to the upcoming 18 May Federal election, no comments or decisions would be made about the DSAPT review, or any other review, prior to the election. SCIA P&A will report on the DSAPT third review and its recommendations when details are made publicly available.
National Disability Strategy (2010-2020) Review The current National Disability Insurance Scheme (NDIS) 2010-2020 will end next year and Australian state and territory governments are collaborating to develop a new NDS for beyond 2020. Public consultations will ensure people with disability are at the centre of the new NDS design and have a leading role in modernising policies and programs affecting their lives. The first stage of consultation closed on 5 July. If you have any questions or comments, contact SCIA P&A on 1800 819 775 during business hours or email: advocacy@scia.org.au ■ 20 accord magazine
Get moving with NeuroMoves NeuroMoves is an innovative, holistic, evidence-based exercise and therapy service designed for people living with a neurological condition or physical disability.
For information on our programs and how NeuroMoves can benefit you contact us on 1800 819 775 or info@scia.org.au
scia.org.au
Resort for people with spinal cord injury Accessible holidays | Short-term accommodation & assistance
Visit our new website sargoodoncollaroy.com and take a virtual tour
Stays may be funded by Sargood on Collaroy is a resort purpose-built for people with spinal cord injury. Spacious and beautifully appointed apartments feature modern amenities and advanced home automation technology to deliver a stress-free experience. A wide range of accessible recreation/ leisure activities and a state-of-the-art gym complete the resort experience and put the fun back into travel. For those looking for an accessible holiday or short-term accommodation and assistance - Sargood is the perfect choice. *Sargood is open to all with permanent spinal cord damage that is not progressive or palliative. 1 Brissenden Avenue, Collaroy, NSW 2097 | P: +61 2 8597 0600 | www.sargoodoncollaroy.com
REGIONAL ROUND UP
Our regional team 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.
Illawarra/South Coast Mel Gorman Suite B, Level 9, Crown Tower 200 Crown Street, Wollongong NSW 2500 T: 02 4225 1366 E: illawarra@scia.org.au New England Vicki Gow & Catherine Rae 20 Murray Street, Tamworth NSW 2340 T: 02 6766 6422 0413 367 520 (Vicki) 0427 257 471 (Catherine) E: ndisne@scia.org.au Northern Rivers Nicole Mathias / Doug Hollingworth Shop 27 Alstonville Plaza Main Street, Alstonville NSW 2477 T: 02 6766 6422 E: northernrivers@scia.org.au
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Sydney The Community Services team in Sydney now has five full time Coordinators providing Support Coordination and Plan Management services to clients in Sydney and surrounding areas.
to his independence and increased his confidence. The support worker also noted that not only have the client’s moods greatly improved, he’s thoroughly enjoying the company of his new friends.
We recently found a support worker to assist a client by helping him increase his access and interactions with the local community. The support worker helped identify activities of interest to the client and, whilst he was hesitant at first, it has made a significant difference
SCIA’s Sydney team have capacity to assist new clients for Support Coordination and Plan Management. Please contact our Customer Connect team on 1800 819 775 to find out the next steps or to gain further information.
Illawarra / South Coast It’s been a very busy first half of the year Kiama Lions Cottage for the Illawarra office, supporting many of our NDIS participants with plan reviews and accessing essential services and equipment. Excitingly, the Illawarra region has been selected to trial the new Assistive Technology and Home Modifications program under the NDIS. This is aimed at improving the planning process and reducing wait times. The National Disability Insurance Agency has advised that they may contact selected participants prior to a scheduled plan review to discuss being part of the trial and to provide further information. We encourage anyone who is offered the opportunity to take part, as this is a great chance to help streamline these processes for everyone who has equipment and home modification requirements.
The Kiama Lions Club has created an incredible opportunity for carers and their families to relax and recharge their batteries at an affordable price in the beautiful town of Kiama. The almost three-year project is now completed and was officially opened in November 2018. The Lions Club understands The Thursday social group continues that being a carer for someone can to meet fortnightly in the Wollongong be rewarding, but also recognise that region. Everyone enjoys the opportunity carers need to take a break, too. to get out of the house and socialise with This unique property is said to be one each other. As the weather is becoming of the only ones in NSW which is a colder now, more activities and lunches dedicated to carers seeking a respite. will be taking place indoors. This social It has been a successful community gathering is a great way to meet new project with Kiama Council and many people and, with a wealth of knowledge local trades offered their services. The and experience within the members, enthusiasm from Lions Club members we always have lots of fun and a good and the community has helped turned laugh. The outing is free, and attendees this special cottage into something that only pay for their own food, drinks and carers can really enjoy. activity costs where applicable. We also Kiama Lions Cottage is just a short walk have a support worker attend who can provide any assistance if necessary. We’d to the beach, the main street and other love to see some new faces at the group, facilities and can be booked for two to seven nights. For more information so contact Mel Gorman at mgorman@ visit www.lionscottage.com.au scia.org.au for further information.
Northern Rivers Northern Rivers Appeals Advocate, Julia Clancy Appealing your NDIS decision for access or for reasonable and necessary supports can be intimidating and traumatic. We are finding more and more people are increasingly unhappy with their NDIS plans, seeking advocacy support to assist them due to the complexity of the NDIS Review and Appeals process. It can be a very stressful experience.
We recently provided Support Coordination for a client who had set fire to her lounge, helping her to quickly notify the NDIS as she prematurely had run out of funding.
I am delighted with my 100 per cent success rate with AAT NDIS appeals. Being a solicitor, I am not intimidated by the NDIA's legal representatives. I also have an excellent understanding of the complex nature of NDIS legislation and guidelines and know exactly what evidence needs to be submitted for a successful outcome.
Recently, I assisted a father who was appealing his son’s NDIS plan, which had inadequate funding for transport, therapies and short term Our Advocacy Team are all highly accommodation. We argued that the experienced and have had some applicant required more transport very successful outcomes. Having an funding for a vehicle purchased to advocate to assist you with your review transport their son. Transport funds or appeal will help make this process would help pay for the ongoing costs less discouraging. associated with the fuel and running of the car. We also requested the inclusion As the Appeals Advocate, it has of overnight hotel expenses when the become apparent that many people family travels three hours each way who seek an NDIS appeal in the to Brisbane for their son’s specialist Administrative Appeals Tribunal (AAT) are overwhelmed, unsure how to appointments. Our appeal was successful, proceed through what can be a drawn with the applicant receiving more out procedure. Some of my clients have funding for short term accommodation been on an appeal roller coaster for up and extra therapy support. The family are very happy with their appeal outcome. to two years trying to gain access.
A week later a plan review meeting was arranged, and within a few days the client’s new plan was generated. Her CORE budget was approved and successfully doubled due to a case put forward on the day and reports provided by our office. This has resulted in the client’s supports recommencing, her faith in the NDIS being restored, and SCIA Northern Rivers having one very happy customer. In terms of advocacy, we currently have a waiting list, with all six advocates working through heavy caseloads, and our appeals officer dealing with 15 appeal matters.
New England
Exploring the surrounds of Sargood at Collaroy.
We recently assisted a client to use his NDIS funds to enjoy a relaxing getaway at Sargood on Collaroy. He was extremely grateful for this assistance, which allowed him to make good use of the facility’s wonderful resort-style accommodation and specialist support. Our client said, “Sargood gave me back faith in humanity. I left feeling rejuvenated and ready for another crack at life!” Over the last few months we have also been working very hard to support several clients with approval for accessing funding for vehicle modifications, home modifications and major assistive technology. It has been a great relief for all parties involved to finalise these outstanding issues and get a positive result for participants.
Upcoming Regional Expos: • • • • •
T enterfield – 31 July – 1.00pm – 3.00pm – Tenterfield High School G len Innes – 1 August – 11.00am – 1.00pm – Glen Innes High School I nverell – 15 August – Macintyre High School T amworth – 19 September – 10.00am – 2.00pm – Tamworth Sports Dome A rmidale – 20 September – 10.00am – 2.00pm – Armidale Services Club
TECHNOLOGY Graeme Smith, Ability Technology
Ending a call by voice
Computer ECU
I used Siri quite a lot at home through my iPhone. It’s good for making calls but sometimes I get stuck in a person’s Voicemail if they don’t answer. Is there some way I could use Siri to end a call?
I am unable to use Google Home and Alexa because I use a computer, not a tablet. I find it more convenient to have my computer in front of me, with its big screen, and I spend most of my time there. What are the options for environmental control from a computer?
As far as I know, you currently cannot end a call by using Siri on your phone. But there are some solutions. First, you can link your phone to an Apple HomePod. When you use Siri to make calls through it, there’s an option to say, “Hey Siri, hang up.”
This is an interesting question. You don’t say whether you’re using a Mac or Windows computer, so I’ll look at both. On the Mac side, it’s now possible to utilise Siri from a computer, giving you access to a reasonable range of appliances using your voice. For Windows, Microsoft has also been active too, with Cortana now providing access to a range of home control pathways such as Philips Hue, Insteon, Wink and LIFX.
Second, if you need to call someone urgently, it may be better to send a text by voice, such as “Hey Siri, ask John to call me.” It will send John a text asking him to call you. If he doesn’t call back, at least you then have the option to call (or text) someone else.
Tablet for speech? I have almost lost the capacity to speak. I have been using a tablet for two years now and can type well. I’m wondering if I can use that to speak for me or whether I need a different device? There are plenty of apps available on tablets for speech, more for the iPad than for Android. Assuming you have adequate literacy, then a text-based system would be most suitable. Two popular choices are Predictable and Proloquo4Text. Predictable is available for both iOS and Android, whilst Proloquo4text is only available on iOS devices such as the iPad. Keep in mind that iOS and Android tablets are not designed to be speech devices. You may find their sound volume adequate for one-to-one communication but not so good when you’re in a group. These devices also do not throw the sound forward, as is the case with dedicated AAC
Another useful option is the Vera Plus, which is effectively a router which claims support for Wi-Fi, Bluetooth, Z-wave and Zigbee devices. It’s controllable using a web browser (e.g. a browser on a Mac or Windows PC). The Fibaro Home Centre is similar. The missing element in these desktop options is infrared control. For tablets, the option to use an intermediate device such as the Logitech Harmony is available, but not for desktops. Another option, the HouseMate, also requires an iOS or Android phone or tablet.
devices. For this reason, some users supplement their tablet volume with a Bluetooth speaker or a speaker case. The iAdapter case is a good example that overcomes the limitations of an iPad for speech output. The iPad fits inside the case which has Bluetooth speakers included. Its costs $555.
Only head movement My father has a severe disability and can now only move his head a little. His voice is weak. He would like to be able to control his television, as he watches it all day. Is there some way he could do this? This is a complex situation and your father would almost certainly benefit from a home assessment, so his exact needs could be identified in person. However, there are options available. For example, a switch such as the Magic Wand Switch may be useful, as it requires only a gentle touch for activation. That could be linked to a HouseMate for TV control. This is just one possible pathway, to reassure you that solutions are available. 24 accord magazine
If you have an assistive tech question you’d like answered, or for further information on any technology featured, contact the Ability Technology team at info@ability.org.au
Hearing problem with an iPhone I am deaf in one ear and have some hearing loss in the other. I have an iPhone 7 and I find that often I cannot hear what is said on the phone, especially when it’s noisy. This is not all the time, so a solution I could use only when needed would be good. I suggest you try Apple AirPods. These provide high quality sound to one or both ears. They are wireless and connect automatically when you place them in your ear. It would be worth visiting an Apple centre to see if they fit comfortably and to make a test call or two.
Technology n
means
Independence
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Connection
Creating social change through employment opportunities for people living with physical disability.
Where do you start?
SCIA's Social Enterprise delivers a wide range of commercial contracts, giving people living with disability the opportunity to gain valuable work experience in temporary, part time or full time employment.
For information on working with us as a client or employee, contact us on 1800 819 775 or info@scia.org.au
www.ability.org.au 02-99079736 Helping you do more
scia.org.au www.scia.org.au 25
ADVERTORIAL
iGet my iLoad Personal modifications to my new Hyundai iLoad by FREEDOM MOTORS have been worth the wait!
W
orking with the FREEDOM MOTORS team was like working with family. FREEDOM MOTORS was where I bought my first van in 2008 and it’s why I didn’t hesitate to work with them again. This is my second Hyundai iLoad because I love the way they run. But the real magic began when the team at FREEDOM MOTORS got stuck in and reconfigured the interior. I’m now enjoying the benefit of an updated set of hand controls. The push brake has been retained although I can now accelerate with just the light pull of a trigger. It’s a fairly sensitive mechanism, but I’ve got used to it in no time. Such an easy to use function puts less stress on my right shoulder and driving on the motorway is now a real pleasure. The team chose to install a hoist rather than a ramp because the new Hyundai iLoads are rear drive, making it impossible to cut the floor for installation. It means I have to drive my wheelchair backwards onto the hoist mid-air, which at the beginning was hair-raising! But, after a few tries, I’m really getting the hang of it.
Best of all, the FREEDOM MOTORS team really listened to what my needs were. Then they went away and worked out how to deliver exactly what I asked for; no one ever said, “It can’t be done.” During the modification process the team continually checked in with me along the way. But more importantly, they really “got” that my van isn’t just another modified van. They recognised that this was a van that would significantly increase my freedom and independence to go where I wanted to go with ease, confidence and convenience. I have named my wonderful new chariot Aquila Freedom. It’s a name that fits beautifully as Aquila (Latin for eagle) certainly does feel like she’s flying when I’m driving! I can join in with my community, participate in employment and socialise with friends and family. And the FREEDOM MOTORS team really understood how important this is! So, an enormous “thank you” to you all for my new Aquila Freedom!
Athena testing out the hand controls
Athena
The awesome team at FREEDOM MOTORS didn’t hesitate to put their Athena Pavlis-Goard creative caps on to meet some of my March 2019 personal requests. They found innovative ways to install an umbrella stand, a storage space and even a hook board for hanging my shopping (of course!) and other items. Now there’s no risk of them falling all over the place while I’m driving. My portable folding ramp and fire extinguisher also have their own spots. The team were even able to place some of the emergency release functions at a level I could reach myself – freeing me being dependent on someone else coming along.
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Freedom team Athena & the
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REVIEW CALENDAR
“Life does not have to be perfect for it to be wonderful” Review by Shirley Carpenter
I really enjoyed reading this book. It’s genuine and raw; written from the heart with real emotion, passion, honesty, humour, determination and an overall sense of positivity in facing life after it’s been thrown into chaos and uncertainty. When Eugene Holzapfel sustained a spinal cord injury (SCI), he and his wife Helen learned how to tackle the unknown, determined to not let it beat them. Instead, they chose to thrive.
Home, Hope and Helen by Eugene and Helen Holzapfel
Giving up didn’t seem to be in either Eugene or Helen’s vocabulary. Even though there were undoubtedly dark times in the beginning, they both said, “Screw you! We’re not going to let this destroy us – we’re going to tackle things head on, and just get on with making our life as wonderful as we can.” When they saw a problem, they didn’t complain; they got stuck in and worked out how to fix it. On a practical level, Home, Hope and Helen is fascinating. It’s even a little gory to read how Eugene comes to grips with catheters and all the paraphernalia required to deal with a body that doesn’t behave as it did before. Able-bodied people tend to think that not being able to walk is the only thing that individuals in wheelchairs need to contend with. But Eugene and Helen bring to vivid reality all the other factors that go along with having an SCI. One message that comes through particularly loud and clear is the importance of having the support of people close to you. And if you have a fiercely supportive partner such as Eugene does in Helen, it’s priceless. When a traumatic event such as sustaining an SCI occurs, it can put a lot of pressure on
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a relationship. But Eugene and Helen’s dedication to each other and their absolute determination to be happy has never been in question. The love they clearly have for each other acts as a lesson to us all. I’m always interested to read accounts of how people tackle life when a traumatic event happens and Eugene and Helen have delivered in spades. It was great to read their account from both their perspectives because it made me realise how very important it is not to forget that family and friends need help as much as the person with the injury. It’s often easily missed that supporters need support, too. The key message I took away from Home, Hope and Helen is that when faced with a truly testing time, ultimately life goes on. Sure, day to day happenings might need to be approached a bit differently but in the end it’s your attitude that matters. How you choose to look at the world will decide if you’re going to be happy and content with your new life or whether it will destroy you. As Eugene says, “Life does not have to be perfect for it to be wonderful”, and he and Helen certainly live by that motto. ■
How will you be remembered? Have you ever thought, how can I leave my mark on the world? A gift in your Will to SCIA can change lives and leave a legacy that will keep on giving for years to come.
Contact our Bequest Manager for more information: scia.org.au | 1800 819 775 | info@scia.org.au www.scia.org.au 29
INFORMATION AND RESOURCES The World I Fell Out Of by Melanie Reid A deeply moving and often darkly funny memoir about disaster and triumph. Melanie Reid fell from her horse and was to spend almost a full year in hospital learning to navigate her way through a world that had previously been invisible to her. The World I Fell Out Of is the untold “back story” behind Melanie’s award-winning “Spinal Column” in The Times Magazine and a testament to “the art of getting on with it”. Borrow from the SCIA library or visit: www.amazon.com Take It Lying Down: Finding My Feet After a Spinal Cord Injury by Jim Linnell Six months shy of retirement and on a family vacation in Mexico, Jim Linnell steps off the porch of a rented guest house and breaks his neck. From a spinal unit in Denver he learns he may live the rest of his life as a quadriplegic. Jim’s injury is incomplete: he has a two-year window for improvement. After rehabilitation at the hospital, he and his wife, Jennifer, return to their home with an amoury of equipment for his therapy and many unanswerable questions. Borrow from the SCIA library or visit: www.amazon.com Across The Street From Hell: My Spinal Cord Injury by Mark Hall On his way to work Mark was ejected from his vehicle leaving him paralysed from the neck down. Follow him on his journey from his life as an ironworker and musician, through the accident, then tackling the daily obstacles of rehabilitation and his new life as a quadriplegic. What follows is an honest, raw and candid insight into the challenges of also being a husband, father and his unrelenting (and successful) quest to prove wrong all the doctors and sceptics who said he’d never walk, live a normal life, or even eat and breathe on his own ever again. Borrow from the SCIA library or visit: www.amazon.com Home, Hope and Helen by Eugene and Helen Holzapfel When Eugene and Helen Holzapfel left for a trip of a lifetime, they never imagined what life might be like living as a paraplegic and with a commitment to life-long caring. Eugene and Helen each tell their own story of the accident, the aftermath in English hospitals, the return to Australia and the long path to restore a normal life. Their accounts illustrate how courage, faith, hope and healthy doses of good humour have helped them on their journey to overcome obstacles and anxiety. Read our review on page 28 and borrow from the SCIA Library or visit www.amazon.com or www.kholzapfel.com Snap, Send, Solve (App) Snap Send Solve is an app that enables authorities and people in the street to identify and solve local issues for the benefit of communities across Australia and New Zealand. It works on the spot with GPS location, enabling users to capture and send photos of issues that need attention - from cracked pavements and dumped rubbish to water faults. Snap Send Solve makes it very easy to report on incidents and for local councils and other responsible authorities to act on the reports. Download the app from the App Store and Google Play.
These publications and resources are available for loan or download from the Spinal Cord Injuries Australia Resource 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. SCIA can be contacted at info@scia.org.au or on 1800 819 775. 30 accord magazine
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