Disability and travel
50 years in a chair
Independence Australiaâ€™s cross-disability magazine AUTUMN 2018
Inform is Independence Australia’s crossdisability magazine.
We encourage readers to submit suitable content for consideration by Independence Australia. All correspondence of this nature should be directed to: email@example.com While every effort has been made to ensure the accuracy of the information in this publication, Independence Australia assumes no responsibility for errors or omissions or any consequences of reliance on this publication. The opinions expressed in this publication do not necessarily represent the views of Independence Australia. Medical information included is not intended to be a substitute for professional advice.
Your NDIS journey of care starts here Your NDIS journey The National Disability Insurance Scheme (NDIS) of care starts here is a new way to provide support for Australians with a disability, their families andScheme carers. (NDIS) Your NDIS journey The National Disability Insurance is a new way to provide support for Australians ofa care starts with disability, their families andhere carers. CORE Disability Insurance CAPACITY CAPITAL & The National Scheme (NDIS) SUPPORTS BUILDING ASSISTIVE is a new way to provide support for Australians TECHNOLOGY Daily activities: In-home Therapy, skills with a the disability, their families and carers. Household aids CORE CAPACITY CAPITAL & and and in community. development and SUPPORTS& Consumables continence products. Daily activities: In-home and in the community. Consumables CORE & continence products. SUPPORTS
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ABN 80 973 805 243 Building 1, 9 Ashley Street West Footscray VIC 3012 firstname.lastname@example.org www.independenceaustralia.com independenceaust independenceaus
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STEP 5 Reviewing your plan
Celebrations This edition of Inform celebrates our achievements. In our feature story we join one of our residential clients Peter, in celebrating 50 years in a wheelchair, and look back on some of the adventures he has had along the way. Steve’s story is one that reflects the impact the NDIS has had on his life and in the shaping of his future. Together with his family and support coordination team, he has been able to self-advocate and get back into the community, which has opened up many previously closed doors. Independence Australia is committed to helping our clients to achieve their dreams, and we’re excited to bring to you the first in a series of travel advice articles. Working together with partner organisations, we will be sharing over the next three editions of Inform a variety of travel tips and anecdotes. We want to hear more from the people we support and the people who support them. If you have a story about your independence, contact us at email@example.com.
4 Calendar 5 Accessibility Weekend 8 Feature 12 Studying with Disability 14 Psychology Services 16 Mental Health 18 NDIS Story 20 Rehabilitation Counselling 22 Travel 25 Polio Perspectives 34 Relationships 36 Housing Choices Australia Interview
Richard Burn General Manager Community Solutions Editor Independence Australia Inform Team Polio Perspectives Editor Fran Henke
Art Direction T-world Sub-editor Sarah Halfpenny
© Copyright Independence Australia 2018. 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.
Inform – Autumn 2018
W hat’s on April — May 2018
APRIL 7 April World Health Day
MAY Prader-Willi Syndrome Awareness month 18 May Global Accessibility Awareness Day 25 May World MS Day
Accessibility Weekend Victoria’s accessible attractions open their doors for Accessibility Weekend. Independence Australia’s annual Accessibility Weekend welcomed over 25 accessible Victorian attractions across the weekend from 9–10 September.
This year’s event also included an opportunity for one lucky participant to win an accessible hot air balloon ride in Global Ballooning Australia’s Easy Access Basket. To enter the competition, applicants had to describe what accessibility meant to them through the use of images, photos or a short written piece.
The event – which ran as part of Spinal Cord Injury Awareness Week – saw over 100 Victorians with a physical disability head out and make the most of the extensive range of accessible attractions (both metropolitan and regional) which were offering free entry, for both themselves and a carer.
The prize was won by Karen, who sent in an entry compiled of images of herself enjoying life with friends. Overwhelmed at receiving the chance to soar high above the Yarra Valley, Karen and her friend were up at the crack of dawn on Sunday morning to take the trip of a lifetime.
Among the attractions that joined Accessibility Weekend for the first time in 2017 were: Casey Stadium, Endeavour Hills Leisure Centre, Scienceworks, Arthurs Seat Eagle and Aquarena Aquatic Centre.
Following her balloon journey, Karen reported back to Independence Australia on Monday morning, posting on Facebook that the amazing experience would be something she would “highly recommend to other wheelchair users.”
Venues that continued to uphold their proud tradition of Accessibility Weekend participation were: Sovereign Hill, Eureka Skydeck, Phillip Island Group, Melbourne Museum and Moonlit Sanctuary.
Planning is already underway for Accessibility Weekend 2018. We look forward to seeing you all then!
Inform – Autumn 2018
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Inform â€“ Autumn 2018
Once a teen hero, Independence Australia residential services client Peter’s life was turned upside down when he sustained a spinal cord injury jumping into his local Kiewa River in Wodonga. 50 years down the track, we look back at his life and the successes he’s had along the way.
Fifty years in a chair It was a sunny September day in 1967, and 14-year-old Peter was swinging from a rope into the Kiewa River with friends. However, a wrong mid-air manoeuvre landed Peter face down on the riverbank, fracturing several vertebrae in his neck, and leaving him a quadriplegic. Compounding this tragedy was the fact that just a year prior, in that same river, Peter had selflessly helped to pull three people from a sinking car. Reflecting on the accident now, Peter remarks on the funny way the universe chose to thank him for that good deed. Following his injury Peter was not expected to survive, and medical professionals told him that from the start. In the ’60s disability was not fully understood or supported, so Peter and his family were simply told that if he made it to 21 he would have lived a great life. He has since outlived most of those medical professionals and he has spent much of his time living in defiance of others.
Inform – Autumn 2018
After his accident, Peter spent 20 years living in his local hospital, and it was here he received his first introduction to travelling. He was in his mid-20s when a young orderly opened his eyes up to the world outside the hospital by simply asking Peter, “Have you ever been away?”
Peter remembers his first ride on a tuk-tuk, where he was convinced he would fall off onto the ground. It was this fear that inspired him to take extreme precautions on a 4-wheel drive trip just a couple of days later, where he was strapped to the chair like an Egyptian mummy with sheets.
Peter had never been away, but that question kick-started a life of travel and new experiences. He started off small, with a weekend trip to Sydney where he fell in love with Manly’s café scene and beaches, and quickly graduated to weeks away in Perth, Darwin and Adelaide. An avid motorsport fan, he followed the racing cars across the country, revelling in the sights, sounds and hype of this high-intensity sport.
Reflecting back on 50 years this year, Peter agrees with the local Thai people – he certainly has been lucky. His support network was dedicated to taking him everywhere possible, and ensured there were no limitations to his dreams. When asked what he wants others to take from his story, Peter’s message is simple: don’t let anything stand in your way and don’t let your disability hold you back. Peter’s story is a great example of the fact that with the right support you can achieve anything you set your mind to.
Of most note, however, was Peter’s trip to Thailand, which he describes as interesting and eye-opening. Many locals had never met a man in a wheelchair and were naturally curious about him, with people coming up to Peter and touching his arms. Later on Peter was told these locals thought he was a very lucky man because he was able to get out and about with his disability, and they wanted some of his luck to rub off on them. With laughter,
The team at Independence Australia congratulate Peter on achieving 50 years in a chair – what a milestone! To find out how to access our services call 1300 032 774 or email firstname.lastname@example.org
Do you need a Continence Therapeutic Plan? Continence is often a topic that arises when participants are developing their NDIS plans. If your continence issues are due to your disability, your continence products and aids should be supplied through your NDIS plan. A Continence Therapeutic Plan needs to be developed by a continence nurse specialist. The plan aims to help participants optimise their bladder and/or bowel function and maximise their independence to complete everyday tasks, such as work, study, volunteering and childhood play. A continence nurse specialist will work with you to develop a therapeutic plan that suits your needs, such as learning how to use the toilet independently, gaining night-time control, and developing strategies to help with challenging behaviours around toileting. The continence clinician will help you choose appropriate products and teach you how to use equipment to manage your bladder and bowel needs.
Are you eligible for the NDIS? Firstly, it is important to establish if you are eligible for the NDIS. Potential participants must meet a number of criteria, including the following: 1. You usually need support from a person, or equipment to do everyday things for yourself because of an impairment or condition that is permanent 2. You are an Australian resident
If you answer YES to any of the following questions, you will need a continence assessment as part of your NDIS plan: ☐☐ Do you experience complications such as urine leakage and related skin irritation? ☐☐ Do you experience regular urinary tract infections? ☐☐ Do you experience regular blocked catheters? ☐☐ Do you experience difficulty using the equipment prescribed to manage your urinary incontinence? ☐☐ Do you require assistance to use your urinary continence equipment? ☐☐ Do you experience regular uncontrolled loss of stool (bowel accidents) and related skin irritation? ☐☐ Do you experience regular constipation? ☐☐ Are you confused about what equipment and aperients (oral medication to assist with your bowel program) to use?
3. You are under 65 years old
Please visit www.ndis.org.au for more information about becoming an NDIS participant.
Inform – Autumn 2018
☐☐ Do you avoid participation in work or leisure activities because of your incontinence?
Studying with Disability
Hitting the books Alex is a student who has recently completed her placement with us at Independence Australia. In this article she shares her experience of studying with a disability.
When I was 19, I was diagnosed with Rheumatoid Arthritis, an autoimmune disease that causes degeneration of joints in the body, chronic pain and fatigue. For years I worked in jobs that I could get without qualifications because juggling work, school and a social life while also managing my health felt impossible. This not only affected me physically but also psychologically, and left me feeling like I was not able to chase my dreams and that I would have to settle with just getting by. This was my barrier; my thinking it was not possible kept me from going back to school and achieving the goals I have to become qualified in Community Services and eventually Social Work. I want to help other people to use the supports around them, to access services and education that will change their life by increasing their earning capacity and job satisfaction. It is all about fulfilling your purpose in life. For a lot of us, studying and gaining qualifications plays a vital role in this. I am now on my way to a career full of diverse and rewarding roles in which I help create change for people facing challenging circumstances, just like me. At the beginning of 2017 I made the scary decision to begin studying a Diploma of Community Services.
I reached out to my course coordinator who linked me into the Disability Liaison Unit at my Institution. I met with them, and together we developed an Equitable Learning Plan that enables me to get longer extensions and adapted conditions without having to produce supporting medical documentation over and over again. This took the weight off my shoulders and empowers me to tailor the learning experience to my needs and use the supports in place when I need to. I strongly encourage people who want to engage in education to share their circumstances when they are considering enrolling, or if they are already enrolled. Unfortunately, at present, there is a huge lack of information about accessible studying and there is no central resource point for people with disabilities to refer to when they are considering engaging in education. There are, however, processes in place that ensure access to education is equitable and to support students with disabilities to successfully complete their studies, without further impacting their lives. There is also a range of scholarships, grants and opportunities available for students with disabilities that are normally advertised in
various locations online. These can be hard to find and sometimes take time to apply for, but can be of great assistance. My advice is to make phone calls, send emails and explore websites until you find information that can help.
Tips for once you are studying: • Communicate with course coordinators, lecturers and tutors about your needs • Do not feel afraid to use the services available • Understand that your needs are valid • Introspection – practice selfcare continuously and be realistic about your needs • Learn and respect your limitations • Have good advocates on your side
Inform – Autumn 2018
Managing social anxiety As one year closes and another begins, many people get excited about all the holiday events and parties they will be attending. Some people get excited about the holidays they have been eagerly awaiting for weeks, but some people dread these social interactions, events and travel.
Social anxiety can cause a great deal of discomfort and may cause people to avoid social interactions and disengage from others as they fear being humiliated, embarrassed, rejected, stigmatised or looked down on in social situations. People who experience social anxiety often imagine and dwell on “what if” situations and scenarios, which cause them to overthink what people may say or what might happen. In this situation it is important to remember and focus on all the things you can control such as: • Being able to maintain a positive attitude • Learning how to address things that may trigger your anxiety • Going into situations with a game plan Managing social anxiety can feel overwhelming, but it is definitely something that can be achieved
by all individuals. If social situations make you anxious, then the summer months can be especially harrowing for you, but it is important to remember you are not alone and there are tips that can help ease your social anxiety. Some of these may include: • Calm breathing – taking slow, regular breaths through your nose • Muscle relaxation – learning to relax your body, which involves tensing various muscles then relaxing them • Realistic thinking – remembering that your thoughts and opinions are not facts! • Learn to identify unrealistic thoughts • Facing your fear – make a list of the social situations you fear and once you have a list, try and arrange them from the least scary to the scariest. Starting with the least
scary social situation, repeat the action you will take and how you will deal with the situation, until you feel less anxious • Have plans for social situations that make you anxious and practise, practise, practise! Feeling anxious in social situations is normal from time to time, and anxiety is a normal and adaptive behaviour. It is important to note, however, that sometimes anxiety can become a problem when our body tells us there is danger when there is no real danger, therefore, the goal is to learn to manage anxiety, and not eliminate it. Independence Australia’s psychology service offers disability-specific mental health support. Seek advice and support by calling us directly at the psychology service on 1300 788 855 or emailing email@example.com
Inform – Autumn 2018
Staying mentally healthy when you have a chronic health condition Many of the clients and members of Independence Australia are living with a chronic health condition, and with good support and effective treatment many of them stay well psychologically. Despite this, research from SANE Australia has shown that 50% of Australians living with a chronic health condition experience depression or anxiety at some point. This is twice the rate of the general population and not particularly surprising, given that physical health and mental health are linked. When someone’s physical health is affected by illness or disability, their mental health is more vulnerable. For people living with a chronic physical illness, both the condition and side effects from treatment can affect the way they think and feel. Illness may have affected their mobility and independence and changed the way they live, see themselves, and relate to others. They may at times feel hopeless about the future and think they don’t want to burden those close to them with their feelings. The emotional impact of an illness – for example feeling sad, frightened, worried or angry – can be overwhelming. In addition, there are times which are particularly challenging for people with a
chronic illness, times when they are most likely to become anxious and/or depressed. These include: • when they are first told about a chronic condition • before and after major surgery • if there are unpleasant side effects to treatment • if the condition returns after a period of recovery • if the illness stops responding to treatment Getting treatment for mental illness is particularly valuable for someone who has a chronic physical condition. Treatment for depression, for example, can also improve their underlying chronic health condition. Independence Australia’s psychology service offers disability-specific mental health support. Seek advice and support by calling us directly at the psychology service on 1300 788 855 or emailing firstname.lastname@example.org Dr Andrew Sinclair Independence Australia – Psychology Service
Abri-Flex Stay active with Abri-Flex Premium A better choice
Abena created the Abri-Flex Premium range with the focus of designing an innovative product of superior quality that feels like normal underwear. Abena Abri-Flex pullup pants allow you to get on with your life and help you maintain your independence. Don’t let your fear of incontinence get in the way of keeping active and spending time with friends and family. Keep on bowling, golfing and dancing and be confident that the latest in European design offers you a discreet and secure product. With different capacities and sizes of Abri-Flex pull-up pants available, Abena provides you with a better choice to suit your individual requirements. Abri-Flex Premium products are manufactured at Abena’s factory in southern Denmark, using super-soft nonwoven material to
ensure optimum comfort. Elastic threads and optimised fit make Abri-Flex a secure and flexible product and the efficient 3D Dual Core is constructed for a more discreet fit with no bulkiness in the front and back. Feel dry thanks to the Top-Dry acquisition layer which allows for fast urine absorption, but keeps the moisture locked in to help skin stay dry and healthy. Leakage security is maximised through high side barriers and internal cross barriers, giving wearers the confidence to stay active. Abri-Flex Premium pull-ups are dermatologically tested and FSC certified. This means that paper pulp used in the 3D Dual Core comes from FSC certified forests, where more trees are planted than felled. The Abri-Flex range includes Abri-Flex Premium, Abri-Flex Zero, AbriFlex Special and Abri-Flex Bariatric.
Inform – Autumn 2018
Taking the road less travelled Steve is an Independence Australia client who has made the transition to the NDIS, and has shared with us the successes he’s had with his plan.
25 years ago, a MS diagnosis turned Steve’s live-totravel lifestyle upside down. In this time he grappled with the changes to his life and his body, and just five years ago found that his situation changed yet again. Still a young man, Steve found himself forced into a nursing home as he could no longer weight-bear, and a nursing home was the only place that could offer him such a high level of support. This move signalled a loss of independence and socialisation to Steve – not only was he now needing more assistance than ever before, he also was no longer able to access the social groups that he had accessed in the past. Steve’s changed living situation also meant that his funding changed, leaving him without funding for the things he had previously used. In its place the nursing home offered organ recitals and other social events that certainly were not very exciting to Steve!
He began to feel trapped – like he was powerless to do the things he wanted to do, or go where he wanted to go. He was surrounded by people much older than him, and with little to keep him stimulated or entertained. The roll out of the NDIS in his region, however, turned everything around for Steve. Due to his situation Steve was lucky enough to be considered for early access to the scheme, and was able to secure his first plan four years ago. Just one year ago he met his support coordinator from Independence Australia, and this is where all the magic has happened. His coordinator understood the need for family engagement, and involved Steve and his family in every step along the way. Together with his coordinator, Steve was able to negotiate a fantastic NDIS plan that met his needs, and even had funding that allowed him to go on a holiday – something he hasn’t been able to do for
many years. In addition to this, Steve was connected with a small team of like-minded IA support workers who had similar interests to him, and were eager to help him make the most of his plan. This support has meant that Steve has been able to expand his social horizons, such as seeing his favourite AFL team (the Sydney Swans) in action, attending WWE wrestling events and even meeting Paul Roos! To all involved, the change in Steve since the NDIS has been incredible. He is much more positive and excited for the future, and with the help of his support coordinator the sky is now the limit. Steve’s story is a testament to what can be achieved if a few great people come together – and none of this would have been possible if it weren’t for the NDIS. If you are interested in accessing our support services please contact email@example.com.
Inform – Autumn 2018
Rehabilitation counselling Kristina is a student who recently completed her placement with us at Independence Australia. In this article she shares her experience studying rehab counselling.
Rehabilitation counselling is a new and growing profession that allows allied health professionals to dedicate their skills and knowledge to helping individuals and ensuring that each individual has an equal opportunity to reach their full potential. Rehabilitation counsellors are a dedicated team of health professionals who are guided by a case management and counselling framework which assists them to support individuals with disabilities and give them social advantages that increase their independence, promote their equality for opportunity and enhance their quality of life. Main areas of focus: • Injury prevention and management • Case management • Coordination of services • Vocational assessment • Vocational counselling • Vocational training and job placement • Independent living management • Personal counselling
Is a rehabilitation counsellor someone who could help you?
a rewarding experience. Some of these include:
Rehabilitation counselling is an easy and accessible service that is delivered to individuals that are looking to regain their independence, and who are looking to improve their psychological, social and physical health. In particular, rehabilitation counsellors specialise in working with people who may have experienced workplace accidents, road accidents, trauma, have a disability, or suffer with mental health issues and substance abuse issues. As health professionals, we aim to put the client first and assist them in identifying their strengths, limitations, goals, and work cooperatively with other health professionals, employers and family members to help develop rehabilitation plans that will assist the individual in achieving these goals.
• Studying to be a rehabilitation counsellor gives me the opportunity to work with a number of different people who have a range of unique characteristics and all have different needs and wants. This allows me to meet and work with a range of resilient and inspirational individuals. • It is a person-centred profession that allows me to take a holistic approach to counselling. • It has been rewarding as I have had the opportunity to learn about individuals’ unique stories of how rehabilitation counsellors have had an impact on their rehabilitation journey. • It allows me to work within a multi-disciplinary team of devoted and enthusiastic health professionals who work closely together to cater for an individual’s needs and preferences.
What are the most rewarding parts about being a rehabilitation counsellor? Through my academic and placement involvement I have discovered a number of facets that make studying and working as a rehabilitation counsellor
Inform – Autumn 2018
Have disability, will travel This November 2014 article is reproduced with permission from CHOICE.com.au
People with disability take holidays just like everyone else, but they often face extra obstacles along the way. We look at the challenges and the how-to of accessible travel, including booking and boarding flights and airport security. Airlines and airports are bound by the Disability Discrimination Act (DDA) to provide services for people with disability. Trained staff should be able to assist with:
• getting around the airport • handling baggage • getting on and off the plane • getting to and from the plane toilet (in the case of a semi-ambulant person) • opening packages and identifying food on board the plane • delivering safety briefings in a way that all passengers can understand. Staff are not expected to assist with eating, administering medication, using the toilet or lifting or carrying a passenger.
Know your needs Flying with a disability takes some forward planning. You should explain your needs to airline staff when you book your flight. Will you: • be travelling alone or with a carer? • need help navigating the airport? • need help with baggage and boarding? • be able to use the toilet on the plane? • be able to understand safety briefings and instructions from staff? (Some airlines have braille or large-print books available). "When you have a disability, your needs change," says Australian wheelchair rugby Paralympic gold medallist Nazim Erdem. "The main concerns are: what do I do if I need to use the toilet? What do I do if I have a bowel or bladder accident? Will I have enough room to do pressure relief so I don't get a pressure sore? But airline staff are mostly aware of this and are very helpful." Plane accessibility Not all planes board via an aerobridge. If you can't manage steps, let the airline know in advance, as you may need to use a lift. Some international budget airlines, such as Tiger, charge a fee. If you're unable to walk to your seat, you can ask for an aisle chair – a collapsible wheelchair narrow enough to travel along the aisle. Most planes have some seats with adjustable armrests, so you can move from the chair into your seat.
Toilets Toilets on planes are usually tiny, so access can be a problem for many people. Some planes offer a privacy curtain so the door can be left open while a carer assists. The 747-300s (now phased out in Australia but still in operation overseas) and the 767-200s and 767-300s have outward-opening doors for easier access. Some of the newer wide-bodied jets, like the A380 and the 747-400 include an accessible toilet. If you plan to board the plane using an aisle wheelchair, check with staff to make sure it will be available during the flight to access the toilet. Wheelchairs
"People with disabilities are first on, last off," says Nazim. "Airlines usually like me seated on the aisle seat but this can be a problem if other passengers need to climb over me to get to their seat or use the toilet."
If you're travelling with a wheelchair, almost all airlines will ask you to check it in. Some budget airlines won't carry electric wheelchairs at all, and those that do may disconnect the battery and carry it separately.
In April 2014 a man with multiple sclerosis was unable to board a domestic Jetstar flight after checkin staff told him his wife would have to lift him into his seat without help from cabin crew because of health and safety concerns. Unlike many Qantas and Virgin services between major Australian cities, which offer an electric hoist, Jetstar only provides a 'slide board'.
In May 2014, Air Asia refused to check in a Western Australian man's electric wheelchair on a flight to Bali. The airline's policy prevents the carriage of battery-operated wheelchairs. Even after the man offered to remove the battery and leave it behind, he was told the chair exceeded the maximum weight limit.
Inform – Autumn 2018
Most airlines have a greater baggage weight limit for mobility aids and medical supplies, and only a few of the budget airlines will charge extra. For health and safety reasons there may be a limit on individual item weight and dimensions, so you could face difficulties if you have a heavier wheelchair that can't be taken apart. Shipping the wheelchair as freight is an alternative option, as is hiring one at your destination. Tip: Some passengers have been able to take their own collapsible wheelchairs on board the new Qantas A380 Airbus.
Hearing aids There's no need to take off a hearing aid before passing through security – it's too small to set off the metal detector, and X-rays and scanners won't damage it. The rule about switching off electronic devices during take-off and landing doesn't apply to hearing aids or cochlear implants. It's important that all passengers can hear announcements.
Assistance dogs Assistance dogs are generally allowed to travel on the floor of the cabin on domestic flights. International flights may be trickier because of quarantine laws and airport rules in the country you're travelling to. You'll also need to consider the quarantine requirements when returning to Australia.
Tips for flying with a disability:
Tip: Speak to the airline well in advance and be sure that you have the necessary paperwork from an accredited animal training organisation.
• Allow plenty of time for checking in, boarding and meeting connecting flights.
Airport security If you have a wheelchair or mobility aid and you're unable to pass through the metal detector without it, staff may search you with a handheld device. If they opt to do a physical search, you have the right to ask for a private room.
Security staff might also search inside mobility aids. Try not to take it personally as smuggling does happen: last year a man was caught at Madrid airport hiding a kilogram of cocaine inside his prosthetic leg.
• Different airlines have different policies. Do your research first on the airline's website. • Speak to airline staff well in advance to be sure they can meet your needs. • Call to confirm plans on the day before your flight.
• If you have a stopover, consider what your needs will be – you may not have access to your mobility aid. • If you're travelling with a carer, they may be eligible for a 'Companion Card' discount from the airline.
polioperspectives Auspiced by Independence Australia
Inform â€“ Spring 2017
The challenges of a new year As we celebrate 30 years of the Network, I believe the recent Polio Day in Bendigo highlighted the resilience not only of the Network but also of all the wonderful people who attended the Bendigo Town Hall. There we heard speakers reminding us of the importance of maintaining good mental health in the face of challenging physical changes.
information as possible is available to members and for maintaining, most importantly, a contact point for the Network.
Polio Network Victoria Committee held its last meeting of the year, and we had a great deal of discussion on the way we proceed into 2018.
Another fortunate happening is that Fran Henke has kindly agreed to be our Polio Perspectives editor and researcher for articles to be included in Inform. It can be difficult and time consuming to source relevant, useful and up-to-date information and this task could not have gone to a more able person who is already very busy. Thank you Fran.
Most committee members travel considerable distances to attend meetings throughout the year and it may be time to consider alternate meetings by teleconference with members only required to phone in rather than travel to West Footscray. We also need to decide on: the frequency of meetings, how we attract new members, ways of connecting with the many thousands of polio survivors who are not in touch with local support groups, Polio Network Victoria or indeed, Polio Services Victoria, and how we celebrate Polio Day in 2018. We welcome your ideas and suggestions to ensure the Network continues to provide vital information and support to the many thousands of polio survivors who live in our State. As with so many volunteer organisations, it is becoming increasingly difficult for many support groups to continue in a formal way. Sadly some have had to go into recess, while a number of groups have "hung up their equipment" and closed. I thank all convenors, past and present, for the valuable work they contribute in ensuring as much
Recently an Administration Assistant has been appointed at Independence Australia to assist us with general organisation of meetings, minutes, and information dissemination. Thanks to IA for this valuable support and a special thank you to Hanna for the wonderful work she has done to date. Thanks also goes to Alison Crowe and Lachlan Hodgson for providing support for the Network through some difficult times and to Richard Burn and Peter Turner (CEO) for their backing.
Late in November, I attended the Polio Australia Annual General Meeting held in Canberra. Part of the agenda again for this year was a visit to Parliament House for the purpose of â€˜walkingâ€™ areas of the House to highlight the fact that as polio survivors, "We Are Still Here". On a personal note, I would like to express my thanks to the many people who made contact following the passing of my dear mum, aged 97, in August last year. Mum fought many a battle on my behalf during the early years and most importantly taught me how to live my life to the fullest. We look forward to a bigger and brighter Polio Network Victoria year in 2018.
Bev Watson Chair â€“ Polio Network Victoria
Now we are 30
This year Polio Network Victoria celebrates 30 years of support to the State’s polio survivors. With the number of support groups in decline, PP Editor Fran Henke looks at how the network grew, how best to continue to look after each other and how to find those polios who still haven’t come forward and need information. On October 18, 1987, a meeting was held in Camberwell to bring together for the first time, Victoria’s polio survivors. It came about this way. From 1982-89, Edith Hall was the Executive Officer of Independence Australia (formerly Paraplegic and Quadriplegic Association of Victoria, founded in 1957). She had polio in 1937 and was acutely aware that nothing was being done in Australia for polio survivors. She decided in 1987 to attend the fourth Polio Survivors Conference in St Louis, Missouri, USA. She wanted information on treatment and rehabilitation. At that stage
awareness of late effects of polio (LEOP) was scant. Stepping back a little: by 1984 in the United States, a growing awareness of LEOP prompted researchers to organise an international conference at the Warm Springs Institute for Rehabilitation, Georgia (founded by Franklin D. Roosevelt). The term “Post-Polio Syndrome" was coined around this time. The second international meeting was held at Warm Springs in 1986 and in the following years there was a significant increase in clinical research into the long-term effects of polio. By 1994 another conference signalled acceptance
Inform – Autumn 2018
of Post-Polio Syndrome as a legitimate clinical entity, though it took many years for that knowledge to spread our way. From the 1987 Missouri conference, Edith Hall brought back books, leaflets, papers, audio and videotapes. The Board of ParaQuad was sympathetic to establishing a polio network, so she held a public meeting. “I could not believe it,” she said in 1997, “on a Sunday [October 18, 1987] in Camberwell and 125 people turned up”. Beth Brodribb, who had been working with ParaQuad’s sheltered workshop, was asked to help create a network.
Beth was given 30 names of polio survivors and the network grew quickly. Her job was to gather and disperse information. Copies of material Edith brought back were sent interstate in the hope of encouraging establishment of self-help groups all over Australia. Within a year, networks of polio survivors were formed in each state and territory. In Victoria, Beth had managed to contact 400 polio survivors, publish the first issue of a newsletter and organise a seminar that attracted people from all over the country. The aim was to discuss the needs of post polio survivors and to share information. Recommendations from the seminar were taken up with the Health Department. In 1989 Rodney Harris, Beth’s son-in-law, took over as Executive Director of ParaQuad when Edith Hall retired. The polio survivor’s network became the Australian Polio Network. By 1990 the polio network had more than 500 members. Driven by the need to learn more, Beth put her hand in her own pocket and with ParaQuad raising the balance of funds she traveled to the next Post Polio Conference in St Louis and from there to England to learn more from the British Polio Fellowship. One of the main challenges after building the organisation, was to educate health professionals about post-polio syndrome and the late effects of polio. In 1990, the Department of Community Services Victoria approved an initial $900 for twelve months to produce and mail the network’s newsletter.
“We had to teach the doctors. It was an uphill battle…one doctor even wrote an article to the newsletter belittling post-polio syndrome,” Beth said in interview in 1997. Support groups were forming in regional Victoria – at Geelong, Essendon, later in the East and on the Mornington Peninsula. In 1995 the Network name was changed to the Australian Polio Network (Vic) then to Polio Network Victoria. In 1994 two community officers (polio) were based at ParaQuad. Their role was to help set up groups, to promote polio immunisation, to raise awareness of needs, to organise workshops, and provide guest speakers to community groups and schools. In 1996, the first Polio Day was held at Ballarat attracting more than 100 people, including representatives from 13 of the 15 support groups. Many survivors met people they hadn’t seen for decades. Being such a success, it was decided to run Polio Day annually. When ParaQuad Victoria changed its name in 2008 to Independence Australia to reflect a broader focus, PV’s Polio Advisory Committee became the Polio Reference Group, with members representing each area of the state. Annual convenors’ meetings involve representatives sharing their group’s needs. By 2012, when PNV celebrated its 25th anniversary with Polio Day at Melbourne Zoo, with Victorian Governor Alex Chernov
AC QC, there were 16 polio support groups across Victorian metropolitan and country areas, run by local members according to each group's needs. Only five years on, the number has declined to around 10 active support groups, with convenors of several of those wondering how much longer they can continue. As members age, become more frail and unable to attend meetings, the challenge is how to stay in touch. Some groups like Bayside manage to fund transport and carers for lunchtime meetings to keep members together. Bayside also includes survivors of other neurological disorders such as cerebral palsy. Whenever an article about polio survivors and post-polio reaches mainstream media, new enquiries are made, and those who couldn’t bear to think about polio again come forward. The information stream must keep flowing – more are out there. While the electronic option of information dissemination is attractive for fatigued minds and bodies, you can’t beat the buzz experienced by the 90 polio survivors, friends and family members, who attended Polio Day 2017 in the fabulous ballroom at Bendigo. The first Polio Day in Ballarat was social, while the event now includes specialist guest speakers. There is nothing like being among fellow travellers. Long may we make the effort.
Polio Day celebrated in goldfields splendour
Dr Andrew Sinclair, Manager of Psychology, at Independence Australia was first speaker on ‘Responding to the challenge: how to live well with a chronic or degenerative health condition’.
Polio Day 2017 – held at the magnificent Bendigo Town Hall on 21 October – was officially opened by Bendigo Mayor, Cr Margaret O’Rourke, who acknowledged the birthdate of Jonas Salk, developer of the vaccine. She also thanked Bendigo Rotary for its financial support to the day.
Dr Sinclair noted this was his tenth year at Independence Australia, coming to the role from working with patients in palliative care. At first he thought working with people with disabilities would be easier than that. “But I have learned a lot in 10 years and the profession has developed in that time too. One thing is the challenge of living with physical disability that cannot be fixed completely.” Andrew was referred patients who had been labeled as ‘difficult’. He soon realised they were not difficult but simply being assertive, trying second opinions, looking for other treatments, and taking responsibility for their own health care. “It’s okay to ask questions and get second opinions. Become your own expert,” Andrew said. People with chronic conditions experience anxiety and depression more than twice the general population, he continued. Anxiety is
Inform – Autumn 2018
“Ageing well is about getting clever in your old age, how to do things smarter.”
about feeling unsafe, about having falls, finding health care and the future. “I try to work around helping people to challenge unhelpful thoughts about themselves and get back into activity. There are two cognitive errors – overestimating danger and underestimating coping abilities.” Dr Sinclair said chronic pain is a big issue for people with physical disability. He noted that many patients are not given the tools they need to deal with pain adequately, and psychology has a lot to offer in relation to chronic pain management. “We tend to think chronic pain is a fault with the system and we can fix it. While the medications we currently have can mask pain, they can’t fix chronic pain. Psychological approaches are a useful adjunct to medical treatment to manage persistent pain.”
Nicola Heath, Provisional Psychologist, at the University of Melbourne, spoke about ageing successfully with a long-term disability, and gave insights from Australian polio survivors. Niki Heath pointed out one in five Australians is living with a disability. Australia has an ageing demographic and people are living longer. “The dominant model of successful ageing states that to age well, older adults must be free of disease and disability, maintain high levels of cognitive functioning and remain actively engaged in life. According to this model, it is therefore not possible for people with a long-term disability or impairment such as post-polio syndrome be considered to be ageing successfully.”
“More than 50 per cent of clients referred to my team are referred for assistance to manage chronic pain. After just two four-hour pain management sessions for polio survivors in Geelong, many reported they now had the knowledge to make change in their lives to enable them to better manage their pain.”
“This is important because, despite concerns that the current model ignores and encourages the marginalisation of those ageing with disabilities, international governments have increasingly turned to the successful ageing research to help form policy responses that aim to limit the future burden of caring for an ageing population,” she said.
The key message is ‘be kind to yourself’ and be a compassionate presence. Handle painful thoughts and feelings more effectively. Dr Sinclair once watched a polio patient cross his waiting room, one leg in a brace. He talked to the man about that leg that the patient described as his ‘bad’ leg, while the other was the good leg. “But I said, ‘Think about that bad leg as the hero – it still got you here!’”
Ms Heath is undertaking a PhD study on successful ageing among disabled subjects, including those with spinal injury and post-polio syndrome. “People with polio are among the first generation of people with a physical disability to live into late age,” Ms Heath told the audience of polio survivors, family members and health professionals. Yet most polio
survivors are not covered by the National Disability Insurance Scheme, which cuts out at age 65. “Research until now has been on helping people ‘ageing successfully’ without disability but what about those with disability and their participation in society?” she asked. “The problem with existing models is that only a small number of adults meet the criterion. To ‘age successfully’ under these models, you need to be able-bodied. This impacts on the self-esteem of those who aren’t – they see themselves as not being able to age successfully. Physical health isn’t the be all and end all. Those with disabilities can age remarkably well”. Her message to health professionals was they will need to be prepared to learn and listen to clients, being very mindful of their past experiences such as those who had polio who went through traumatic childhood treatments and years in hospitals. “We need to rethink and up-skill aged care facilities to consider the needs of older adults with physical disabilities,” she said. For post-polios, the main challenge is matching energy levels. One of her interviewees pointed out “You could take pain medication until you go gaga!” but that wasn’t how she wanted to live her life. “Ageing well is about getting clever in your old age, how to do things smarter,” commented one interviewee. Niki said that men in
particular did not reveal to family what had happened in the past so as not to upset them. They were putting up with prejudice. “You are the most resilient bunch I’ve ever met in my life, but you do have topace yourself,” she advised. Anne Silbereisen, Psychologist at Melbourne Health. Melbourne Health clinical psychologist Anne Silbereisen conducted a practical session on mindfulness. “Mindfulness is a way of becoming comfortable with the mind, paying attention on purpose, in the present moment without judgment. This can allow us to de-stress and rest the mind. A growing body of research shows mindfulness can help both the mind and body,” she said. Anne took the group through a session of mindfulness, focusing on breathing in, holding for a count of two, and then exhaling, several times until we were able to stop following our thoughts. Questions and comments afterwards showed how much people gained from the experience. One participant said her mind was continually racing, but had stopped during that session.
Inform – Autumn 2018
Polio Perspectives bookcase Life Skills for Polios – a light-hearted handbook Everything you wanted to know about post-polio but were too afraid to ask? This is the ideal book for those wanting to know how to manage not only post-polio symptoms, but how gracefully to: • go shopping when supermarkets are too big or too far • downsize home and life • demand the right chair • avoid falls and worse problems • manage the big four painful body parts • exercise without overdoing it, and • find much-needed sleep
Life Skills also takes seriously hard-to-talk-about and unexpected polio-related outcomes like incontinence, dealing with anaesthetists, recognising heat and cold intolerance, embracing the brace, and coping with childhood abuse. Retired journalist, artist, author and polio survivor, Fran Henke, has gathered the latest information from world polio experts and lived experts, to bring together a wide range of solutions to the diverse issues that affect polios. Published by Mornington Peninsula Post Polio Support Group to benefit PNV and Polio Day 2017. Cost is $15 plus $7 postage and packaging.
PP BOOKSHELF ORDER FORM
Life Skills for Polios Price: $15 Postage: $7
Iron Wills Price: $20 Postage: $7
Polio Day Cookbook Price: $15 Postage: $7
Send completed form to firstname.lastname@example.org Independence Australia, 9 Ashley Street, West Footscray Victoria 3012
Iron Wills – Victorian Polio Survivors’ Stories Iron Wills includes a history of polio, and how 30 years ago Polio Network Victoria was founded. It is built on the accounts of Victorians affected by the polio virus, how lives changed mostly in early childhood, from diagnosis, to treatment, school, work and the dreadful discovery that more was to come: the late effects of polio. The Polio Day Cookbook – fine food for the fatigued The aim of this little cookbook was to find nutritional advice, recipes and strategies for eating well and creating good food when energy levels are high.
New film on polio A new film about the challenge to overcome polio was screened in Australia this summer. It opened overseas to rave reviews. Breathe is based on the true story of Robin and Diana Cavendish and their fight to lead a normal life. Robin, aged 28, was given three months to live after being paralysed from the neck down by polio. He worked not only to improve his own life but the lives of others, becoming an advocate for the disabled in the process. The European Polio Union is organising a DVD of the film for polios not able to go to cinemas. Breathe began screening commercially in Australia on 26 December. A fundraiser for Polio Australia with a preview of Breathe was held in Geelong on 19 November.
Polio Services Victoria update Polio Services Victoria is holding a number of regional clinics in 2018 – email email@example.com or telephone 03 9231 3900. Regional clinics for 2018 (provisional dates): Bendigo – 17/05/2018 Horsham – 28/06/2018 Rosebud – 23/08/2018 Traralgon – 18/10/2018 Warrnambool – 29/11/2018
Polio Services Victoria is now set up with Telehealth facilities that enable its team to see clients in regional areas from the metro base. PSV is aware that clients may prefer to wait until the team is visiting their area to arrange an appointment, however, with this facility clients can be seen via Telehealth at other times.
Inform – Autumn 2018
Are you guilty of emotional sabotage?
Everyday attitudes that can kill a relationship We’ve all been guilty of it at one time or another – a simple misplaced word, an ill-thought-out comment, expressing an exasperated sigh or simply giving someone the cold shoulder. Although we might not assign too much significance to it at the time, it’s likely that the recipient of this behaviour doesn’t see it the same way.
Sadly, nothing affects our emotional brain and our sense of wellbeing more than feeling emotionally cut off from those to whom we are most attached; be they our partner, our children or even our parents. A harsh word or a tiny expression of contempt or disgust is enough to speed up the heartbeat in the person to whom the comment is targeted. Once the emotional brain is aroused in this way, it can rapidly turn off our ability to reason rationally. We no longer look for responses that will restore calm to the situation, instead, we become overwhelmed by our emotions and can only think in terms of defence and attack. Dr. John Gottman has conducted more than 40 years of research into the factors and skills that can make or break a relationship. Over time he has identified four key attitudes and behaviours that can quickly sour even the strongest relationship.
Criticising someone's character, instead of simply stating a grievance about a specific behaviour, can often be the first sign of trouble. Sadly, it’s often something we slip into without realising. Simple criticisms such as, "You’re selfish!" can easily slip out in the heat of the moment. In all likelihood, the recipient of the criticism ends up feeling attacked and potentially misunderstood. Indeed the one criticism can quickly escalate into a war of words that – unless addressed appropriately – can eventually lead to the destruction of your emotional connection. Contempt is often expressed through insults and sarcasm. Comments such as, "You’re an idiot" or "Yeah, whatever!" can really make us feel unloved, unheard and unappreciated. Facial expressions, such as rolling your eyes, are often all it takes to communicate contempt. When we notice these signals from someone we live with, they go straight to the heart. When we feel like we’re being attacked, the two responses the emotional brain offers us are fight and flight. The problem of counterattack is that it leads to only two possible outcomes. Either it provokes an escalation of
hostilities or the defeated party ends up feeling wounded. Either way this only widens the emotional gap and makes living together more difficult. The other option – stonewalling – often foreshadows the final phase of a disintegrating relationship. After weeks or months of criticism, attacks and counter-attacks, one party disengages, at least emotionally. It’s a behaviour which often leads to a very unhappy end. Simple techniques that can make all the difference Thanks to Dr. Gottman, we now understand, to an unprecedented extent, what is going on in the heads and hearts of people in conflict. Importantly though, we also know some of the secrets of success. For example, replacing judgment with an objective and specific statement of facts means that the other person will likely treat our words as an attempt to communicate rather than as an attack on his or her being. Additionally, explain how the behaviour makes you feel. If you talk about what you feel, nobody can argue with you, after all it’s your experience. By talking about yourself, you’re no longer criticising or attacking the other person.
If you talk about what you feel, nobody can argue with you, after all it’s your experience.
Inform – Autumn 2018
Now you’re simply expressing your feelings, and therefore being authentic and open. Help is at hand – introducing our new relationship workshop series Building effective relationships takes hard work. Even happy marriages for example are rarely, if ever, perfect. Indeed there can be significant differences in temperament, interests, desires and even family values between spouses and/or close family members. Factor in a chronic illness/injury and there’s often a flow-on effect to families and interpersonal relationships. Finding the right way to communicate is the key. If you’d like to start working on improving or strengthening your relationships, our new relationship workshop can help. Run over four half-days, the workshop can help you: • Build positive sentiments and feelings • Override negative thoughts and feelings • Build optimism about each other and your relationship • Repair your connection when it breaks down, and • Learn how to support each other’s goals and dreams To register your interest in attending, simply email firstname.lastname@example.org Or phone Jenny on 9418 0410 or Primrose on 03 9418 0480 for more information.
Housing Choices Australia Interview
An interview with Gabriella Browne Commercial Manager, Disability and Older People Housing Choices Australia November 17, 2017
1. What are the top issues facing Australians with disabilities?
they love that bring them happiness, peace and create memories and a sense of belonging.
Safe and secure housing is definitely a critical issue for many Australians with disability, particularly young people with disability transitioning from Out of Home Care when they turn 18. Where will they live and how will they be supported as they enter adulthood?
3. With the NDIS, what kind of design changes will we see in housing for people with a disability?
Ageing parents caring for an older child with disability is not a new topic, but is still problematic on so many levels. It’s incredibly hard for older parents to care for their adult children with disability without support. This, coupled with the shortage of appropriate housing, is one of the most concerning issues families are facing. 2. What does accessible housing look like? I think the term “accessible” is more about the physical environment and less about what makes a house a home. A dear person in my life, who has an intellectual disability, told me that he likes his house because he can put pictures on his walls and have a friend to sleep over, but his friend isn’t allowed. I think his thoughts sum it all up beautifully. Yes, an accessible home must be safe, practical and appropriate, but a home is much more than compliant grab rails and ramps. It’s about people surrounding themselves with the things
Plenty we hope. Collaboration will be the fastest route to innovation. And innovation will lead to efficiencies and better and more cost-effective outcomes for everyone. Housing Choices has a project at Box Hill in outer Melbourne where we’re just about to begin construction, which really excites us. We are building two homes, plus a residence to accommodate carers, to house four fantastic young people on the autism spectrum, with high-level needs. But from day one of the design process, we have worked incredibly closely with all four families – thrashing out the best ways to build the houses so these young people can live independently, but with the right support, hopefully forever. Thus far, the process has been an absolute joy and, of course, all the learnings can be applied to future projects. The outcome we hope will determine how we go about building homes for people for specific needs.
A design breakthrough for wearers and carers
Changing traditional continence products can be a challenge for both wearers and carers alike, whereby many older-style products are cumbersome and not quick or easy to change. The good news is that TENA Flex is making changing easier than ever before. Tenille Taylor, TENA Healthcare Marketing Manager, explains… Many people may not realise there have been significant improvements to the form and function of continence products, with modern designs such as TENA Flex delivering significant improvements in changing, skin integrity, odour control and leakage. “The unique belted design of TENA Flex gives those who are able to self-change the ability to do so – which is just not the case with many other bulky, more traditional continence products. For carers, it makes changing a breeze, and protects their back by reducing the need to lift the wearer onto the pad. For any carers who have experienced back strain, this is simply game-changing.” With people staying at home longer, who may have more complex care needs, it’s now commonplace for those at home who are both active and mobile, or bedbound, to need a product that is both easy to change and less cumbersome.
Benefits for wearers • Easy to apply thanks to the unique belted design and absence of excess bulk around the hips. • Improved skin integrity featuring FeelDry technology to draw urine quickly away from the skin, as well as material that allows the skin to breathe. • More comfortable to wear with double leg cuff elastics for maximum comfort
reduction in skin rashes2
reduction in leakages1
1 TENA Flex Clinical Trial, Sarah Wollett, New Zealand, December 2009 – vs all-in-one or two-piece products. 2 TENA Flex Clinical Trial, Sarah Wollett, Australia, February 2011 – vs all-in-one or two-piece products.
Benefits for carers • Minimises lifting during changing, which has proven to reduce the risk of back strain. • Makes changes less intrusive thanks to the belted design. • The easy belt and tabs makes it simpler to toilet where possible. and protection against leakage. • Extensive range of 12 products across absorbencies and sizes small to extra large. Belt extension also available.
Shop online at store.independenceaustralia.com To request a free sample, call Independence Australia on 1300 788 855 or email email@example.com
Inform – Autumn 2018
Useful information Polio Australia 03 9016 7678
Council On The Ageing (COTA) 03 9654 4443
Polio Services Victoria 03 9288 3900
DHHS 1300 650 172
Post Polio Victoria 0431 702 137
Disabled Motorists Australia 03 9386 0413
RACV Breakdown Service 131 111
Independent Living Centre 03 9362 6111
Carers Australia 1800 242 636
NDIA 1800 800 110
Centrelink (Disability) 132 717
My Aged Care 1800 200 422
Centrelink (Aged) 132 300
TADVIC 03 9853 8655
Commonwealth Respite and Carelink Centres 1800 052 222
State-Wide Equipment Program (SWEP) 1300 747 937
Polio Network Victoria support groups Please contact Independence Australia on 1300 704 456 for more details Ballarat Wednesdays (bi-monthly)
Mornington Peninsula Saturdays (monthly)
Bayside (Hampton) Tuesdays (monthly)
Shepparton Tuesdays (quarterly)
Bendigo Saturdays (monthly)
South Eastern Saturdays (monthly)
Geelong Mondays (monthly)
Traralgon Wednesdays (monthly)
Hume Saturdays (monthly)
Warrnambool Tuesdays (monthly)
Knox-Yarra Ranges Tuesdays (monthly)
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 firstname.lastname@example.org www.independenceaustralia.com
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