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Works of heart

Loving life in Mexico

SpinChat

AUTUMN 2017


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Welcome

Going further together This Autumn 2017 edition of Inform celebrates people out there in their communities. In our feature story, John shows how his determination resulted in a new creative direction, and has led to more opportunities for him in his community.

4 Disability Sport & Recreation Festival 5 Polio Day 2016 6 Daddo Charity Golf Day 2016 7 Calendar 8 Feature

Matt and Estelle’s story is one that reflects a couple’s success in shaping their future, and how a supportive employer, their own determination, and the National Disability Insurance Scheme (NDIS) led to a big passport stamp in Central America!

14 Beach Access Update 16 Travel 18 SpinChat 20 Spina Bifida Foundation

The importance of supporting people to explore their career/family, creative, social, and sporting options has always been part of Independence Australia’s core purpose. With the transition of an increasing number of our clients to becoming participants in the NDIS, the support we give to enable people to make informed and positive choices in their lives becomes more and more relevant to the aims of the national scheme.

21 What’s Out There Day 22 Psychology Services 24 Men’s Wellbeing 25 Featured Product 26 NDIS 27 Polio Perspectives 34 Victorian All Abilities State Netball 35 Diamond Valley Basketball Association

We want to hear more from people that we support, and people who support them. If you have a story about your independence, contact us at theteam@indepedendenceaustralia.com Richard Burn General Manager Community Solutions

Managing Editor Lachlan Hodgson

Art Direction T-world

Editor Nicole Tattersall

Sub-editor Sarah Halfpenny

© Copyright Independence Australia 2017. No part of this publication may be reproduced without the written consent of Independence Australia. No responsibility is taken for accuracy of information. Opinions published in Inform are not necessarily those of the publication’s team.

Autumn 2017

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Disability Sport & Recreation Festival

Go your own way On a warm and bright summer’s day along the beautiful Crown Riverwalk, the Independence Australia team attended the recently held annual Disability Sport & Recreation Festival (DSR). Each year, the festival coincides with International Day of People with Disability, and welcomes thousands of people of all abilities who come along to engage in and learn about what sport and recreation opportunities are out there for those living with a disability. The Independence Australia team asked the question, “What does independence mean to you?” Answers varied, from people acknowledging that it’s something they take for granted, to those who interpret it as being in control of their own life. Those interested in finding out more about what Independence Australia offered were provided with information about the camps, day trips, personal recreation and community access programs, and volunteering opportunities. To find out more about the Independence Australia recreation program, email services@independenceaustralia.com For further information about the festival visit www.dsrf.org.au

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Polio Day 2016

60 years on: a vital vaccine in Victoria Independence Australia and Polio Network Victoria’s annual Polio Day acknowledged a significant milestone in the condition’s history this year.

polio survivor and co-founder of Mindwerx International, and local MP Frank McGuire.

Sixty years have passed since Victoria first received the polio vaccination and halted the spread of the virus. More than 100 people attended the inaugural event, held at the Arts Centre in Melbourne, on Saturday, 22 October 2016. Eminent scientist and research biologist, Sir Gustav Nossal AC, CBE, officially opened Polio Day, which also featured guest speakers, including global advocate Ramesh Ferris, Bill Jarrard who is the Canadian

The theme of 60 years was a central focus throughout the day as guest presenters shared their experiences with fellow survivors and their supporters. Fran Henke, Secretary of the Mornington Peninsula PostPolio Support Group, was the Master of Ceremonies. Fran is one of the survivors who was diagnosed with the condition in 1946. A big thank you to Sir Gustav Nossal AC, CBE, the Polio Day Committee, and Independence Australia’s Marketing and Community Solutions teams for their commitment to ensuring Polio Day 2016 was a success.

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Daddo Charity Golf Day 2016

Hit me with your best shot A mix of golf enthusiasts and beginners joined Independence Australia for its annual Daddo Charity Golf Day on Friday, 25 November 2016. On arrival at Fingal’s world-class golf course, Moonah Links on the stunning Mornington Peninsula, 140 players received a gift bag filled with treats from our generous sponsors, as well as a polo shirt provided by Neodigital. 2016 marked 12 years since the Daddo Charity Golf Day began, making it one of Australia’s longestrunning and largest charity golf events. As in past events, players on both the Open and Legends courses were eligible to enter two competitions;

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‘Nearest to the Pin’ and the popular ‘Hole in One,’ sponsored by Advance Careers, where players could win a Jeep Cherokee. While most players accepted the challenge, unfortunately no one drove home in the new wheels. Once play concluded, players headed to the clubhouse to enjoy a few drinks and a barbeque dinner before the best players and teams were awarded their prizes. The famous monster raffle was then drawn, gifting 26 lucky players a prize donated by our generous sponsors. The event raised $50,000 through ticket sales and sponsorship, to help fund Independence Australia’s psychology and counselling programs, which receive little or no government funding. Thank you Independence Australia would like to extend a sincere thank you to all those who attended the 2016 Daddo Charity Golf Day. We would also like to thank our event day supporters and the Daddo family for their constant support. Plans are now underway for the 2017 Daddo Charity Golf Day. We look forward to seeing you all then!

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Calendar

W   hat’s on March — May 2017 MARCH

APRIL

4 March NDIS Community Fun Day – Ballarat

7 April World Health Day

18 Armstrong Street, Ballarat VIC ndis.gov.au

21 March Spinal Cord Injury Family Support Group Royal Talbot Rehabilitation Centre 1 Yarra Blvd, Kew VIC 0403 046 816

29 March NDIS Early Childhood Community Forum – Ballarat 900 Pleasant Road, Redan VIC ndis.gov.au

Worldwide

18 April Spinal Cord Injury Family Support Group Royal Talbot Rehabilitation Centre 1 Yarra Blvd, Kew VIC 0403 046 816

24–30 April World Immunisation Week Worldwide

MAY 26 May Polio Network of Victoria committee meeting

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Feature

Trying a new activity unlocked a hidden talent in John. From simple mounds of clay into brightly coloured and functional artwork – it’s all in a day’s fun for this newly inspired potter.

Works of heart Photography by Nicole Reed

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Autumn 2017

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Feature

Over a year ago, John, who lives in one of Independence Australia’s home facilities, was feeling that his daily activities were not matching what he was actually interested in. It was then that John started working with one of Independence Australia’s Case Managers to provide him with guidance on how to reconnect with friends, as well as joining a regular pottery class. John has always been interested in being creative, and pottery appealed to him because of the tactile nature of clay – he enjoys getting his hands dirty and the multiple processes involved in producing a piece of ceramic work. The Independence Australia Recreation Program funded John’s first classes, with his family then taking over the costs. As well as making presents for his family, John produced over 25 items – bowls, mugs, plates, and vases to name a few – but was feeling down that he was finding it hard to take it to the next level and sell his products. John recently re-engaged with his Case Manager to find a way to sell his ever-growing collection of pottery. After some discussion within the team, it was discovered that the Knox City Council Christmas Carols was hosting a market to showcase handmade items made by those living with a disability, so John’s Case Manager engaged the Council.

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Feature

“John has always been interested in being creative, and pottery appealed to him because of the tactile nature of clay – he enjoys getting his hands dirty and the multiple processes involved in producing a piece of ceramic work.”

They were able to move past their three-month waitlist, and secure a spot for John to sell his products, with only five days’ notice. To further assist John in the public debut of his ceramic works, an art-focused support worker was hired to help John at the event. “I was most impressed. It went off really well. Please thank everyone involved. I really liked the worker – when she left I told her, ‘This isn’t goodbye! I’d like to meet up again’. My stall did better than even Vision Australia’s! I got some great ideas for how to maybe paint my pieces differently in my next classes, and I felt good because people liked my work.” At the market John sold all but three items and is looking forward to making more in the near future. He enjoyed seeing how much children enjoyed his work, especially the cut-out animals featuring bright colours and patterns. If anyone living with a disability feels they may benefit from the assistance of having access to one of Independence Australia’s Case Managers, they can contact Dr Andrew Sinclair on 1300 704 456.

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Autumn 2017

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Beach Access Update

Wheels to the water Disability access mats have been rolled out across many Australian beaches this summer, giving everyone the chance to enjoy the sand and the waves. Victoria’s Hobson Bay City Council in Melbourne’s west was the first in the state to introduce the infrastructure at Altona and Williamstown beaches. The beach mats stretch from the foreshore and allow those in a wheelchair 24-hour access to the water. Described as an “amazing” experience in an interview with 9 News, local water enthusiast

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Alex Gatt enjoyed the opportunity to join his siblings in the ocean. The success of these two beaches has prompted many other local Councils to follow suit, with Mount Martha, and Torquay Beach (in Queensland) rolling out the beach mats soon after. In addition to beach mats, specifically designed beach wheelchairs are being deployed across Australia and are

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available free of charge. Beach wheelchairs are able to navigate the sand and do not require the presence of beach mats to help people with disabilities experience the waves, sea and sand. These ‘all–terrain’ wheelchairs can be booked or borrowed from local shires or visitor information centres.


Connecting lives Through the use of technology, people living with a disability can be connected to local and global communities, create their own opportunities, and self-manage aspects of their lives. Staying connected has never been easier, however it comes at a cost, which can be prohibitive for some. Some organisations have recognised the importance of having access to technology for those who cannot afford a computer. These companies offer refurbished computers and laptops at reduced costs for people with concession cards, or who meet other selection criteria. Computerbank Victoria Inc. computerbank.org.au 03 9600 9161 Green PC greenpc.com.au B2C Recyclers b2crecyclers.com.au 03 9005 0101

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Travel

¥Hola! Loving life in Mexico In 2002, Estelle Parker was already one year into her career as a foreign policy analyst and diplomat when her then-boyfriend, Matt Lennox, incurred a spinal cord injury that left him C5 quadriplegic. Estelle and Matt were determined not to let Matt’s injury prevent them from realising their professional dreams.

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The Department of Foreign Affairs and Trade allowed Estelle to work in its Victorian office while Matt underwent rehab at Talbot. After two years surrounded by Matt’s family and friends in Melbourne, Estelle and Matt moved to Canberra so that she could take on a policy role. She is now Australia’s Deputy Ambassador in Mexico City. Matt is taking a three-year break from his full-time job as a Business Analyst (which he held for seven years before they moved), to take on the role of ‘diplomatic spouse’. Given the family is on an Australian Government posting, NDIS agreed to fund Matt’s support workers. Mexico City is not the most accessible city, although it is improving. Most public buildings like cinemas, department stores, government departments, museums, and theatres, have wheelchair access, but many commercial buildings do not. Footpaths are often cracked, or do not have curb cuts, and new footpaths are often built without consideration for wheelchair users. Matt is getting around this by planning his outings. He has worked out accessible routes to and from local shops and restaurants, and is getting to know the local restaurants and bars that have wheelchair access. Wheelchair taxis in Mexico City are generally reliable if booked in advance. After Estelle was appointed, the Australian Embassy found an accessible apartment for the family to live in and arranged for minor renovations to the property. The Department of Foreign Affairs and Trade’s attitude to employees with a disability or with carer responsibilities has changed for the better since Matt

Autumn 2017

had his accident in 2002. There is now a designated ‘Disability Champion’ chosen from amongst Australia’s highest ranking diplomats, and the Department’s Women in Leadership initiative has meant flexible working hours are becoming more accepted. This allows Estelle to balance her work and carer responsibilities. Overall, the move has been positive for Matt, Estelle and their two children who are aged five and seven. In addition to exploring the fascinating history and culture in Mexico City, the family have spent a week in an accessible resort in Campeche province, built by an American former marine with quadriplegia and his wife, and have visited a small Mexican town for a weekend away with friends in a beautiful hacienda in the mountains. They have enjoyed incredible Mexican food, along with authentic aged tequila and traditionally brewed mezcal. They are looking forward to further adventures in the next three years of their posting in Mexico.

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SpinChat

Spinning yarns & marking milestones As the 2016 school year drew to a close, SpinChat reached another exciting milestone in our program. We have spoken to a total of 50,000 young people about risk prevention and spinal cord injuries over the four-year duration of the program – that’s over 12,000 people a year! This milestone is a fantastic one to reach, as each audience member brings us closer to our goal of reducing the incidence of spinal cord injuries due to risk-taking behaviours. This milestone would not have been possible without our passionate speakers – their hard work and determination has made SpinChat what it is today. They approach each presentation with purpose and a passion for spreading the risk prevention message.

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Also in 2016 we had a number of firsts – our first joint Spinal Cord Injury Awareness week celebration with the TAC (Transport Accident Commission), and our first International Day of People with Disabilities presentations for the Level Crossing Removal Authority and Melbourne Metro rail – and we’re looking forward to nurturing these relationships further in 2017. SpinChat aims to raise awareness, promote prevention and educate secondary students about spinal cord injury. Those at highest risk of suffering a spinal cord injury are aged between 15-24 years old (80% male, 20% female). The program sees young people with a spinal cord injury speak to community groups, schools and sporting clubs about life before their injury, the cause of their injury, and life since. To find out more, or to book a presentation, visit www.spinchat.org.au or call 03 9418 0490.

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“We are just regular people, nothing inspirational, but just living normal lives like any other adult.” Featured SpinChat speaker Antonio Vecchio

Tell us briefly about your accident and your injury? When I was 19, I was involved in a single car accident while driving to work in extremely wet conditions, which left me with a spinal cord injury (C6/7 complete quadriplegic). What are your interests? I enjoy fine dining and wine, keeping fit, music, reading, and soccer. I have played wheelchair rugby for almost 10 years, I try to volunteer when I can, and I love seeing others succeed. I also enjoy just sitting drinking a coffee and people watching! Do you work/study? If so, what do you do? My main priority is my studies at Chisholm where I’m currently learning about mental health and alcohol and other drugs, with the intention of working in the mental health industry. What are you reading right now? ‘Eleven Rings’ by Phil Jackson.

Why do you think SpinChat is important? I think it’s important because education towards better decision-making is something that may help these young people as they transition to young adults. If the program helps just one person make a decision that saves their or someone else’s life, that to me is priceless. Also, removing the stigma around people with spinal injuries, showing that we are just regular people, nothing inspirational, but just living normal lives like any other adult. What is so rewarding about SpinChat? To me the opportunity to help young people is priceless. The most rewarding aspect is after a presentation when the students reach out to me because they want to share their story with me or simply just say thank you. It’s very humbling. What is something not many people know about you? I’m a big NBA fan, and also I was part of a band that performed for Muhammad Ali in 2000.

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Spina Bifida Foundation Victoria

Adventure time Recently, a group of Spina Bifida Foundation Victoria members had the opportunity to enjoy a relaxing summer camp in the picturesque Glenmore Valley. The close-knit group of 15 adults experienced a number of typical camp activities including archery,

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campfire stories, canoeing, and yabbying. They caught up with old friends, made new ones and enjoyed time away from home. Due to the challenges of living with Spina Bifida, the majority of the campers still live at home with their parents, so this was a valuable chance to get away from the day-to-day, and socialise with people dealing with the same challenges.

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This was the first partnership camp between the Spina Bifida Foundation and Independence Australia. The holiday program is provided at a subsidised rate, or free of charge, thanks to the outstanding generosity of our donors. To find out more about the camp and recreation services we offer, email services@independenceaustralia.com


What ’s Out There Day

New tips on the block The recent ‘What’s Out There Day’ event at the Royal Talbot Rehabilitation Centre was held on Wednesday, 7 December 2016. It was attended by a number of IA representatives: Paul Creswick (the new Business Development Officer), Jenny Koadlow (one of the IA psychologists) and Melissa Alemis (a provisional psychologist on placement with Jenny). The day started with a panel discussion, including stories from individuals who have experienced an SCI (Emma Booth, Richard Lee, Marty Korytowski, Antonio Vecchio, Christian Brackley, Rocca Salcedo, and Martin Heng). The panel was facilitated by Nazim Erdem and covered a range of issues including: families and relationships, new bowel and bladder regimes, pain management techniques, rehabilitation, re-integration into communities, return to work and/or study, sporting pursuits, and travel tips. The audience members were provided with opportunities to ask the panel members questions, and this generated in-depth discussions. The panel members shared some inspiring stories and motivational philosophies consistent with positive psychology and a strength-based approach. One panel member made the comment “Look at what you can do and build on it”, while other members recommended getting back into the community as soon as possible and keeping your mind busy to maintain independence. A consistent theme that emerged was returning to work and/ or study and the sense of accomplishment this can

bring. Another shared viewpoint was the importance of routine and utilising organisation skills to prepare for unpredictable events and overcome barriers. A pertinent example was planning ahead for plane travel both domestically and internationally that included strategies such as organising an aisle chair and sufficient catheters. There was also consensus regarding pain management strategies that included: hydrotherapy, generally keeping fit and flexible to maintain range of movement, massage, mindfulness techniques, Pilates to strengthen back and neck muscles, using a manual wheelchair to maintain strength, and yoga. The panel discussion was followed by an informal lunch, providing opportunities to meet panel members and other participants experiencing an SCI. After lunch, there were small group discussions that engaged participants in more detailed discussions. There were multiple exhibits, including one from Independence Australia, which offered relevant information to participants experiencing an SCI, their families, and health professionals. Modern, lightweight wheelchairs, modified sporting and leisure equipment, modified vehicles, and specialised travel agent services were some of the showcased products. Finally, there was an opportunity to observe a scuba diving demonstration in the hydrotherapy pool.

If you want to attend the next WOT Day please contact Jenny Koadlow on 03 9418 0410 or jenny.koadlow@independenceaustralia.com

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Psychology Services

Speak your mind One of the least-recognised aspects of disability is the psychological impact. For those who acquire a disability, it is often difficult to adjust to life when the way you do things and the way you feel about yourself has changed. What services do we offer? Our psychology and counselling service offers assistance with the following:

Even for those who have lived their entire lives with a disability, each new phase of life such as leaving home, meeting a life partner, having children, or ageing will bring with it new challenges. The lives of your family members may also be affected in different ways.

• adjustment to living with a disability • anger • depression

Our specialty is working with people with a spinal cord injury or people who’ve had polio, but we also offer counselling to people dealing with any form of physical disability. Our counselling service is for individuals, couples or families and can help you to achieve greater health, happiness and enjoyment in your lives.

• disability and ageing • family and relationship conflict • grief and loss • identity issues • intimacy and sexuality concerns

Who is eligible for this service? Anyone who has a physical disability and/or their family members. Children and teenagers may be referred on to more specialised child and adolescent services.

• pain and fatigue • self-esteem • social isolation • stress and anxiety • thoughts of suicide; plus more

How do I access the service? 1300 704 456   psychology@independenceaustralia.com   independenceaustralia.com/services/psychology

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We also offer different peer support groups and workshops. These vary in their focus and are specific to people with a physical disability and/or their family members.


Meet our psychology students

How does therapy or counselling work? We offer a confidential, supportive and nonjudgemental counselling service.

Antonietta Scaffidi and May Cigdem are Provisional Clinical Psychologists commencing a placement at Independence Australia this year. Both women are in their final year of a Master of Psychology degree at Swinburne University and have long had an interest in health psychology. Their experience is varied and includes work in both hospital settings and community clinics with clients of all ages and from diverse backgrounds, with concerns including adjustment issues, anxiety disorders, depression, grief and loss, and a history of trauma.

You can: • discover different perspectives on your situation • discuss choices or opportunities and gain insight into personal strengths and challenges • explore ways of coping with troubling emotions, thoughts or situations • gain a better understanding of what you are experiencing • seek feedback, information or support

Antonietta and May aim to enhance the wellbeing of clients by increasing their resilience and allowing them to tap into their inner resources (using a strengthsbased approach) while navigating and connecting with external supports and other resources within our community. They also hope to assist clients in managing pain and stress, as well as teaching relaxation and mindfulness techniques, and becoming aware of unhelpful thinking patterns.

The goals of therapy are discussed in the initial sessions and are driven by your personal needs. The specific purpose or aim of any therapy will vary from person to person, and depends upon your situation and needs.

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Men’s Wellbeing

All too often, men put off going to the doctor or, worse still, won’t go at all. In fact, studies show that three times more men than women say they haven’t visited a doctor in the last 12 months, while 25% claimed they’d wait as long as possible before getting help with a health problem.

What’s up doc? Manning up to see your GP Unfortunately, feeling fine is not the same as being healthy. High blood pressure, blood sugar and cholesterol can silently affect your health, and difficulties urinating may seem small at first, but should be checked out early to avoid potentially serious health problems in the future. If you or a mate are putting off seeking health advice for fear of finding out about potential issues, it’s time to man up. Just like changing to a better diet, doing some exercise, or losing weight, it’s about taking responsibility for your own health.

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peace of mind. If you’re experiencing the following symptoms it’s important to make an appointment as soon as possible: • You need to urinate more frequently or pass smaller amounts. • You need to rush to the toilet more often. • You’re having difficulty starting to urinate (hesitancy). • You feel like you’re straining or taking a long time to urinate. • You’re experiencing a weak flow.

If you’re over 50, you should get your prostate checked every 12 months.

• You feel like your bladder isn’t completely empty once you’ve urinated.

Many men’s prostates get larger as they get older due to a non-cancerous condition known as ‘benign prostatic hyperplasia’, or prostate enlargement, so instead of worrying yourself sick, it’s best to see your doctor for

Don’t be tempted to diagnose yourself. Your doctor should investigate these symptoms but – don’t panic – they don’t necessarily mean you have prostate cancer.

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Hartmann’s PütterPro 2 Compression without the complexity

According to recent statistics, chronic venous insufficiency and leg ulcers affect approximately 1-2 people per 1,000 of the general population, with approximately 10-20 people per 1,000 developing ulcers during their lifetime. Ulcer healing rates can be poor, with up to 50% of venous ulcers present and unhealed for 9 months. Unfortunately ulcers that don’t heal can have a detrimental impact on the overall health and wellbeing of the patient, as well as cause significant economic burden. There are several challenges with existing compression therapies, most of which focus on poor product compliance. Having a compression solution that’s easy-to-use and patient friendly will increase compliance and ultimately create better healing outcomes.

PütterPro 2 is the new two-layer bandage providing inelastic compression that lasts for seven days. The main indications for PütterPro 2 are venous leg ulcers and chronic venous insufficiency. In summary, chronic venous insufficiency is a term used to describe the changes that can take place in the tissues of the leg, due to longstanding high pressure in the veins. This high pressure in the veins usually occurs because blood flow in the veins is abnormal, secondary to valvular incompetence, causing reflux (reverse flow) in the veins. So how does PütterPro 2 help with greater blood flow? It’s the combination of short and long stretch bandaging that provides the ideal mode of action. The padding ensures the stiffness of the applied bandage when the patient is active (short stretch). In contrast, the outer layer ensures the upkeep of resting pressure after several days because the short stretch compression bandages decreases over time (long stretch). So having the combination of dressings ensures resting pressure is maintained for up to seven days to the shape of the leg.

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Shop online at store.independenceaustralia.com

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NDIS

Some people have said, “If I had to choose between walking again or getting back the use of my bowel and bladder, I would rather use a wheelchair the rest of my life but be able to use my bowel and bladder.” The National Disability Insurance Scheme (NDIS) has shifted the reimbursement landscape, providing an opportunity for disabled people with continence issues to access the products they need, so they can live an inclusive and fulfilling life with minimal interference from their disability and the issues related to it.

Incontinence and the National Disability Insurance Scheme Are you NDIS-ready when it comes to your continence care and catheters? The impact of incontinence on an individual can be devastating in terms of a person’s ability to participate in many life areas, including the confidence to gain employment, or increased social isolation due to the stigma of being incontinent in public.

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Currently there are a number of existing state and federal-based funding models whereby people with a disability can access funding for incontinence such as CAPs, SWEP and ENABLE. As this will cease when people transition into the NDIS, moving into the NDIS is your opportunity to revisit what will help you best manage your continence needs. Coloplast recently conducted an NDIS participant survey and found that unless continence is actively raised by the participant or the planner it may be completely missed all together. • 25% of survey participants did not have continence raised at all during their planning meeting. • People said, “I didn’t even know I could have included continence products on the plan” and, “I would have appreciated more information about the different products available before my planning meeting.” • 40% of participants would like to make changes to their continence funding in their next NDIS meeting. Independence Australia can guide Victorian residents in understanding how to navigate the NDIS.

To find out how to access our disability services now and get NDIS-ready, call 1300 704 456 or email services@independenceaustralia.com. For residents in other states, information can be accessed from www.ndis.gov.au

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polioperspectives

polioperspectives Auspiced by Independence Australia

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polioperspectives

Reflections on 2016 I’d like to extend my sincere thanks to all Polio Network Victoria committee members who continue to be the link between the support groups in their region and the workings of the PNV committee.

Some polio survivors may have already rolled over to the NDIS and others will be part of the rollout over the next months and years. I urge you to be diligent in gathering all the supporting evidence you can to enable a suitable plan to be developed which best matches your needs now and into the future. It will be a challenging and hopefully rewarding time for those eligible to enter the NDIS.

In May last year, Gary Edney joined us as a committee member and his extensive legal knowledge and experience has provided invaluable support. New members are always welcome, so please give this consideration.

This year Polio Australia hosted the AustralasianPacific Post-Polio Conference in Sydney. Congratulations to all involved in bringing this most valuable conference together.

Thanks are extended to Independence Australia staff who have assisted with practical support for meetings and the preparation of materials for Polio Day. Polio Day 2016 was a particularly important event for PNV as it celebrated 60 years since the introduction of the Salk vaccine into Victoria in 1956. We were delighted to have as special guests Sir Gustav Nossal AC, CBE, Mr. Don Jago (Rotary Club of Camberwell), Mr. Bill Jarrad (Mindwerx International) and Mr. Frank McGuire MP (Parliamentary Secretary for Medical Research). Thanks to Fran Henke, who undertook the task of MC on the day, for her usual attention to detail and background on our special guests. Special thanks also to Maxine Keystone and Georgie Stayches for their tireless work to make the day such a success, and for the raffle prizes provided by members Joan Tie and Lyn Bates. Feedback from attendees was most positive.

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In November, I attended the Annual General Meeting of Polio Australia. As part of the awareness-raising campaign – ‘We’re Still Here’ – a large group of polio survivors ‘walked’ to the House of Representatives and Senate at Parliament House, Canberra. Polio Network Victoria (under the auspice of Independence Australia) is still keen to employ an Administration Officer on a part-time basis (10 hours per month) to help with office tasks, enquiries and distribution of information. This position can be undertaken from your home with back-up resources from IA. If you are interested, please contact me to discuss. I hope you’ve had the opportunity to rest, draw breath and be ready to carry on again with all the wonderful work you do every day to support fellow polio survivors and educate health professionals and the general public. Bev Watson Chair, Polio Network Victoria

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polioperspectives

In the Spring 2015 edition of Inform the first half of Eulberg’s article ‘What Having Had Polio Causes, Might Cause and Does Not Cause’ was published.

What having had polio causes, might cause and does not cause PART 2

The second half of the article covers what symptoms may be related to polio (secondary effects) and what symptoms may be compounded by having had polio (tertiary effects). It provides useful insight for polio survivors and others into what symptoms are and are not polio-related. More important than establishing the relationship between a condition and prior polio is finding a treatment or solution for the medical problem. Post-polio experts agree that in most instances the management or treatment plan for the secondary and/or tertiary problems are the same as for people who did not have polio. Published with permission by Marny K. Eulberg, MD, Family Practice, Denver, Colorado

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Marny K. Eulberg, MD, is a polio survivor who has worn a brace for more than 30 years. She is a family physician who founded a post-polio clinic in 1985 and has seen more than 1,500 polio survivors. Eulberg was named ‘Colorado Family Physician of the Year’ by the Colorado Academy of Family Physicians in 2005. She is a member of the PHI Board of Directors and serves as Secretary.

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polioperspectives

What symptoms/signs may be related to polio (secondary effects)? Increased wear and tear on joints. Including osteoarthritis, tendonitis, tendon tears, bursitis. When a person has a weak limb, the unaffected or lesser affected leg or arm does more work to compensate, and weakness from polio can lead to arthritis problems in the good limb as well. People who use their arms in place of their legs (crutch walkers, users of canes, manual wheelchair users) put more stress on the joints of the upper extremities than someone who has normal use of their legs, and this can result in damage to cartilage, tendons and ligaments in the wrists, elbows and shoulders. Nerve compression. Carpal tunnel syndrome can be caused/aggravated by pressure on the heel of the hand and palm from crutches and canes or from propelling a manual wheelchair. Other nerves may also be compressed by abnormal positions of joints and of the vertebrae in the spine. Symptoms of nerve compression are usually a numbness or tingling, an ‘electric shock’ sensation and sometimes progressive weakness in the area of the body supplied by the particular nerve that is being pinched. Increased respiratory problems from increasing curvature of the spine resulting in less room for the lungs and internal organs. Fatigue from increased energy expenditure. Walking with an abnormal gait, use of crutches and propelling a manual wheelchair all require more energy than unimpeded walking. For example, walking with a locked knee can use up 20 percent more energy than walking with an unlocked knee, and walking with two crutches can burn up to twice as

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much energy as an nondisabled person would use walking the same distance. Headaches. These can be ‘muscle contraction’ headaches that may be caused by chronic overuse of neck muscles, unusual use of neck muscles when doing daily tasks or related to abnormal positions of the neck from muscle imbalance or scoliosis. Headaches, especially upon awakening, can be from inadequate ventilation (breathing) overnight that may be due to respiratory muscle weakness and/or sleep apnea that may or may not be connected to prior polio. Emotional issues. These can include post traumatic stress disorder associated with hospitalizations and medical procedures and/or teasing by childhood peers or dysfunctional family interactions with the person who contracted polio.

Inform


polioperspectives

What symptoms may be compounded by having had polio (tertiary effects)? High blood pressure and/or coronary heart disease aggravated by weight gain and decreased exercise that were related to limitations imposed by polio.

positions around a joint or from crutch/ cane walking or propelling a manual wheelchair and cause these symptoms. Inability to know the position of a part of the body or where it is in space (decreased proprioception).

Weight gain (including overweight and obesity) linked to decreased exercise/ activity. Significant obesity, can, of itself, lead to obstructive sleep apnea and restrictive lung disease plus other problems including diabetes, osteoarthritis of hips and knees, etc. Diabetes in susceptible individuals, related to decreased activity and/or weight gain. Skin breakdown, or pressure sores, from prolonged sitting without shifting position, from sleeping in one position due to difficulty turning in bed or from poorly fitting supportive devices (corsets, braces).

Food getting stuck in the lower esophagus (in the midchest or lower). Abdominal pain or diarrhea. Cancer of any kind. Liver disease. Kidney disease. Most infectious diseases, except perhaps pneumonia in a person with a weak cough or who has swallowing problems and is ‘aspirating’ food into their lungs. Skin rashes, but unrelieved pressure on areas of the skin can cause skin breakdown and redness.

Situational depression associated with decreased functioning and independence.

Diabetes, but weight gain and decreased activity often worsen blood sugar control in persons with other risk factors for diabetes. Hardening of the arteries (atherosclerosis) in the heart, legs, neck, brain, although lifestyle changes induced by polio may increase the likelihood of developing this when added to other risk factors.

What symptoms/signs are NOT related to polio? Tremor of arm, leg or head especially when that body part is at rest. Problems with ‘sense organs‘. Vision, hearing, taste, smell. Seizures. Allergies to medicines or to things in the environment. Dizziness or vertigo, ‘the room spinning’. Sharp, shooting pains or severe burning pain with numbness. Generally, polio does not cause numbness, but nerve compression can result from abnormal

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polioperspectives

Polio past & present As one of the largest disabled groups in the world, polio survivors helped to advance the modern disability rights movement through campaigns for the social and civil rights of the disabled.

paralytic polio (between 20,000 and 40,000 people). Many polio survivors living in Australia are now living with a range of symptoms and chronic conditions which may be attributable to the original polio infection, as well as the challenges of living with the effects of ageing with disability. Today, the disease has been eliminated from most of the world, and only three countries worldwide remain polio-endemic; Afghanistan, Pakistan and Nigeria.

Polio is a highly infectious disease caused by a virus that invades the nervous system. The virus enters the body through the mouth and multiplies in the intestine. Initial symptoms are fatigue, fever, headache, pain in the limbs, stiffness in the neck and vomiting. It can cause total paralysis in a matter of hours.

Over the next two editions of Inform we will look at the history of polio in Australia through a timeline covering from the first recorded epidemic in 1885 to 2016 when the Life Stage Matters, Australasian/Pacific Conference was held in Sydney by Polio Australia.

In Australia from the 1930s to the 1960s, significant numbers of Australians experienced

The figures Worldwide

Victoria

The World Health Organization estimates that there are 10 to 20 million polio survivors.

7,016 notifications of poliomyelitis and 509 associated deaths were recorded between 1929 and 1977.

1 in 200 infections leads to irreversible paralysis. Among those paralysed, 5% to 10% die when their breathing muscles become immobilised. Polio cases have decreased by over 99% since 1988, from an estimated 350,000 cases then, to 74 reported cases in 2015.

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1 in 4 paralysed by polio weren’t recorded in official figures as the majority of those assessed were no longer infectious by the time their polio was diagnosed.

Australia

1 in 200 infections from the polio virus did enough damage to those infected to present with paralysis.

No less than 100,000 Australians in 2013 are living with the later effects of polio.

Source: Australian Bureau of Statistics (ABS 1901–2013) and World Health Organization 2017

Inform


polioperspectives

Polio in Australia and Victoria 1885–1932 1885: First epidemic recorded in Australia – 18 cases at Port Lincoln, SA.

1903: Victoria’s Sir William Colin Mackenzie (1877–1938) wrote the standard references for the treatment of polio in Australia, America and England. Colin Mackenzie left Australia in 1903 to continue study in orthopaedic surgery, particularly the work of Hugh Owen Thomas 1834–1891, after whom the Thomas Splint was named. He developed a new way of treating polio patients. Immobilization and splinting was not enough, adding ‘muscle re-education’ to the rest and recovery. He encouraged maximum use of a patient’s remaining muscle strength to reduce muscle deformity. Dr Colin Mackenzie changed the way polio patients received treatment not only in Melbourne, but throughout the world.

1908: 155 cases recorded in Victoria including author-tobe of ‘I Can Jump Puddles’, Alan Marshall, then aged 6.

1911: Polio first became a notifiable disease in Tasmania, with all Australian states and territories following by 1922. 1915: Private Thomas Thomas, born 1885, Port Lincoln, South Australia, transferred to a hospital ship then the Military Hospital in Bristol, England suffering with polio – paralysis of left leg and foot. Returned to Australia as medically unfit to serve in April 1916.

1920s: Work on polio care and research from 1925–31. Jean Macnamara interested Macfarlane Burnet in researching a convalescent serum. This led to them discovering the different types of poliovirus, each producing its own antibodies.

1928: 185 cases in Victoria – 155 under age of 16, of those 147 under 12. Two eldest, men of 44 and 55 both died. 1931 and 1932: Record number of cases in Australia – 462 and 717 cases.

1918: Major outbreak. 1925 to 1931: Dame Jean Macnamara was consultant and medical officer responsible to the Poliomyelitis Committee of Victoria and in 1930–31 was an honorary adviser on polio to authorities in New South Wales, South Australia and Tasmania. From 1928–51 she was honorary medical officer to the Yooralla Hospital School for Crippled Children. In 1935 she served on the Royal Commission to advise Sister Kenny’s methods of treatment. She was a member of the Consultative Council for Poliomyelitis 1937–42 and 1947.

Autumn 2017

1932: Queenslander Sister Kenny initiated a polio treatment that promoted passive and active movements in patients. This method was deemed controversial, going against immobilisation recommendations. However, her work is now considered to be the forerunner of modern physiotherapy. One of her hospitals was at Hampton.

Next edition 1933–2016

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Victorian All Abilities State Netball Team

Smells like team spirit The Independence Australia Victorian All Abilities State Netball Team enjoyed a successful 2016 Marie Little Shield campaign, finishing third at the national netball carnival for people with intellectual disabilities.

Head Coach Janet Parker reflected on the tournament and thanked major sponsor Independence Australia for their support. “The Marie Little OAM Shield offers a brilliant opportunity for competitors. Without the support of Independence Australia, these players would not have access to such an affordable competition.” “It’s a great honour to represent Victoria, and this playing group has represented our state with pride,” said Parker. The Independence Australia Victorian All Abilities team narrowly lost their semi-final against South Australia, after winning their pool matches against QLD and Western Australia. New South Wales were the eventual winners, claiming their second Marie Little Shield. The Marie Little Shield, in its fourth year, is supported by Netball Australia and provides an opportunity for women with intellectual disabilities to compete at a national level. Victoria is represented by women from across the state who undergo intensive selection and training throughout the year in preparation for the tournament. NetSetGo The Independence Australia Victorian All Abilities team is an integral part of Netball Victoria’s high performance and community pathways. The team is underpinned by a strong All Abilities netball pathway, beginning with Inclusion NetSetGo, a modified introductory netball program for people with disabilities, All Abilities netball competitions at 16 sites across Victoria and an All Abilities division of the Netball Victoria State Titles. For more information about the 2017 Independence Australia Victorian All Abilities State Team and All Abilities netball, please contact the Community Development Team on 03 9321 2244 and community@netballvic.com.au

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Inform


DIamond Valley Basketball Association

40 years of ballin’ In 2016, Diamond Valley Basketball Association (DVBA) celebrated its 40th anniversary. It dates back to humble beginnings in 1976, where a two-court facility was built on Civic Drive in Greensborough to allow locals to take part in organised basketball. Up until 1998, the Diamond Valley Basketball Association used to manage the stadium and the Diamond Valley Sports and Fitness Centre. We were very passionate about servicing the community with a range of programs and aimed to give everyone a sense of belonging. It’s a ‘home away from home’, inclusive of all – competitions and programs for able-bodied, intellectually disabled and wheelchair-bound athletes. The growth of basketball locally, within the past 40 years, has been exponential. The Association today has five regulation-sized courts with over 5,500 playing member. It caters to male and female athletes of all levels, both senior and junior, offering competitions and programs so they are able to participate in the sport they love. Though the Association has taken big steps forward in its 40-year journey, one thing has fallen behind – the accessibility of the centre. Currently the facility has hidden, very limited and impractical disability and pram access. There is one single wheelchair lift to access the courts, and unfortunately all of the bathroom and kiosk facilities are on the higher

levels, making utilising all amenities a tiresome process for some of the centre’s patrons. DVBA CEO Ross Wignell has been a big player in pushing our 40th anniversary wish – a ‘master plan’ redevelopment of the facility, meeting with Council and stakeholders in order to turn the idea into a reality. The master plan blueprint is to expand the facility to 11 courts and to solve the accessibility problem once and for all – allowing players and spectators front door ease and practicality of use, and provide the opportunity to explore reintroducing programs such as Wheelchair Basketball in future. “Despite our Association coming along in leaps and bounds in recent years, as it stands currently we are limited in what programs we are able to offer, or bring on, to service all members of our local community. It’s important to me to improve this as part of our master plan, because of the many benefits it will provide moving forward,” Ross explains. In research conducted on the Association’s history, it became evident through photos and personal accounts that the DVBA once offered Wheelchair Basketball, and even hosted Wheelchair Basketball National Championships tournaments in the 1980s. We hope that our 40th anniversary wish can soon reach the approval and funding it requires to become a reality and, moving forward, we can offer a truly inclusive service to our local community.

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STEP 2 STEP 1

Preparing your plan

Developing your plan

STEP 3

Getting your plan approved by NDIA

STEP 4

Choosing your providers and implementing your plan

Your NDIS journey of care starts here The National Disability Insurance Scheme (NDIS) is a new way to provide support for Australians with a disability, their families and carers. Independence Australia is a registered NDIS provider and offers the full range of support for people including continence and nutrition products, equipment, in-home care and support coordination.

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

STEP 5

Reviewing your plan


Independence Australia offers a circle of support As a leading service provider, our dedicated team of coordinators 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. Core Support

Capacity Building

Daily activities: in-home and in the community

Therapy, skills development and coordination of support

Supports and services to assist a person to: • do things independently • participate in the community • access educational opportunities • develop daily living skills

Services to assist with enhancing capacity building and achievement of goals through: • psychology and counselling • therapy assistance (exercise) • support connection • coordination of supports • specialist support coordination • individual skills development and training

We provide assistance with: • self care / personal support • high intensity self care assistance • domestic assistance • household activities and meal preparation • one-on-one support for children • community access, social inclusion • transport Direct contact 1300 032 774 services@independenceaustralia.com

Consumables and continence products Personal health care products including: • daily continence supplies • wound care products • protective aids • nutritional products • daily living aids • skincare FREE samples, fast delivery to door, discreet packaging available. Direct contact 1300 788 855 ndis@independenceaustralia.com

Direct contact 1300 032 774 services@independenceaustralia.com

Capital/Assistive Technology Household aids and mobility equipment Equipment and aids for your daily living needs, environmental and mobility needs including: • wheelchairs (power or manual) • electric scooters • lift chairs • walkers and frames • electric beds • bathroom, kitchen and household aids FREE delivery, consultation and trial within the greater Melbourne area. Delivery also available to Geelong.* *Terms and conditions apply

Direct contact 1800 625 530 info@mobilityaids.com.au

For general enquiries email ndis@independenceaustralia.com or call 1300 032 774.


Useful Information Polio Australia 03 9016 7678 Polio Services Victoria 03 9288 3900 Post Polio Victoria 0431 702 137 Breakdown Service (RACV) 131 111 Carers Australia 1800 242 636 Centrelink (Disability) 132 717 Centrelink (Aged) 132 300

Commonwealth Respite & Carelink Centres 1800 052 222 Council on the Ageing (COTA) 03 9654 4443 Disabled Motorists Australia 03 9386 0413 Independent Living Centre 03 9362 6111 TADVIC 03 9853 8655 State-wide Equipment Program 1300 747 937

Polio Support Groups

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Ballarat Wednesdays (bi-monthly)

Knox-Yarra Ranges Tuesdays (monthly)

Bayside (Hampton) Tuesdays (monthly)

Mornington Peninsula Saturdays (monthly)

Bairnsdale Bendigo Saturdays (bi-monthly)

Northern (Coburg) Saturdays (monthly)

Eastern Saturdays (monthly)

Shepparton South Eastern Saturdays (monthly)

Geelong Mondays (monthly)

Traralgon Thursdays (bi-monthly)

Echuca Hume Saturdays (monthly)

Warrnambool Tuesday (monthly)

Inform


Ready to swim in the pool this Summer?

Rest easy this Summer with the SOSecure® Containment Swim Brief – so discreet it’s virtually undetectable under any swimsuit. Designed for adults, youth and children dealing with incontinence. The hook and loop closure and four-way stretch fabric ensures a secure, snug fit regardless of body shape.

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Autumn 2017

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Independence Australia is a: NDIS approved provider TAC service provider DHHS service provider

Our services include: In-home care Accommodation Respite care Psychology and counselling Case management Outreach and support Information Post polio support Health care products and equipment

1300 704 456 service.enquiry@independenceaustralia.com www.independenceaustralia.com

  independenceaust  @independenceaus

Inform Magazine Autumn 2017  

InForm is a magazine produced by Independence Australia - Community Solutions. It is a resource on health and living for those with a disabi...

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