SUMMER Edition 2013/14InformA newsletter for our community

incorporating PolIoPerspectives

Accessibility Weekend 2013

Polio Day 2013

Delivering new workplace models

IA SummerInform 2013 (DEC) Cover.indd 1 10/12/2013 2:46:22 PM

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Welcome

Inform incorporating Polio Perspectives is published quarterly by

ABN 80 973 805 243

208 Wellington StreetCollingwood Victoria 3066

PO Box 1189Collingwood Victoria 3066

T 1300 704 456F 1300 704 451E inform@independenceaustralia.com polio@independenceaustralia.comW www.independenceaustralia.com

EDITORJen Sykes

DESIGNER Bridget Hoadley

PRINTER Genuine Print

Chief Executive OfficerPeter Turner

BOARD OF DIRECTORSChairmanBrian Meltzer

Deputy ChairmanCliff Wise

MembersPeter DaddoLyn DaviesElizabeth JonesJeremy LongDanny O’Neil Paul Solomon

Inform incorporating Polio Perspectives, is the official newsletter of Independence Australia. We welcome articles of interest and reserve the right to edit or reject submissions as we see fit. Published articles do not necessarily reflect the policies of the organisation. Any information included is not intended to be a substitute for professional medical advice.

Deadline for the next edition is COB FRIDAY 21 FEBRuARY 2014

It is always a busy time of year. October was Polio Awareness month and we had a terrific event in Geelong this year. Check out the photos on pages 18 & 19. Then in November it was Spinal Injury Awareness Week and Independence Australia is involved in a number of activities for this. We have a smorgasbord of articles for you ranging from an update on the NDIS to a story about the recent Asia and Oceania Boccia championships in Sydney. Flick through, have a nibble here and there, and come back for more later.Please take care over the holiday

season and I wish you and your families and friends a safe and happy summer. Over the Christmas and new year break I will, as usual, be burying my nose in some good books and with this in mind I leave you with this quote from Jane Austen (and with apologies to the non-readers out there). “The person, be it gentleman or lady, who has not the pleasure in a good novel, must be intolerably stupid.”

From the GMMarcia Baron

2013 has been a very busy year with many changes – the commencement of the NDIS in the Barwon region and a change of government (Federal). NDIS will bring major change to the way the Disability sector has operated in the past and it’s going to take a while for all of us to understand how the new system will operate. A very positive change is that there are so many people who are now receiving support under the NDIS who were not accessing any services in the past. Independence Australia is gearing up for these changes and we’ve introduced some new initiatives which we believe will put

us into a good position in the future. Earlier this year we piloted a “Lead Support Worker” role in our In-Home Service and this has proved to be so successful that we are now implementing this program across Victoria. We’ve also revamped our recreation program and our Recreation Coordinator works with people to assist them to access the community. Due to the students involved in our counselling service we have run a number of new programs – assertiveness, pain management, healthy lifestyle changes.On behalf of the Board and all the staff at Independence Australia I would like to wish all of you a safe and happy Christmas and New Year.

Jen Sykes

From the Editor

Well here we are again approaching another silly season.

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In Home Service

NDIS update

From 20 September 2013, the name DisabilityCare Australia reverted back to the National Disability Insurance Scheme (NDIS). Going forward, the Agency will be known as the National Disability Insurance Agency (NDIA). Seven offices in the four NDIS launch sites have been open for business for almost five months now. The two offices in Barwon are located at 168-170 Little Malop Street, Geelong and 108 Bromfield Street, Colac (co-located with Centrelink & Medicare).

People with disability and their families are making plans and starting their journey towards realising their long-term goals and aspirations. As at 13 September, more than 1300 plans are agreed or under development and many people with disability are making the transition from existing State or Commonwealth arrangements to their personal plan as part of the NDIS.

Many people are satisfied with their current arrangements and are very happy to continue with the support they receive on the same basis as before. Some people want to try out new ways of doing things. There are some people with disability who want to take more direct control over their support arrangements by self-managing some or all of their support plan. It is especially good to see that some people with significant and permanent disability who have not been part of any service system are now contacting the NDIA to start the conversations that may lead to a personal plan for support.

Under the bilateral Agreement for NDIS Launch between the Commonwealth and Victoria, the following programs have been transferring across to the NDIA; people on the Disability Support Register and Early Childhood Intervention Services waiting list, Futures for Young Adults and Individual Support Packages (ISP) (including Day Programs). DHS are working out cessation dates for people in receipt of an Individual Support Package (ISP) to ensure clients and providers experience a smooth cross-over. Similarly, the Department of Health and the Department of Education and Early Childhood Development are facilitating the transition of clients to the NDIA.

New ministry announcedSenator Mitch Fifield has been sworn in as the new Federal Minister for Social Services with responsibility for disability services and aged care. In opposition he was Shadow Minister for Disability, Carers and the Voluntary Sector and NDS developed a strong working relationship with him. He is a strong advocate for the NDIS and for disability employment.

Kevin Andrews, Minister for Social Services, will be the Cabinet Minister with principal responsibility for the Department currently called Families, Housing, Community Services and Indigenous Affairs. In Opposition, as Shadow Minister for Families, Housing and Human Services, Mr Andrews took a keen interest in the not-for-profit sector and reform of the Disability Support Pension. It will fall to him to argue the case for the NDIS and disability employment at the Cabinet table.

During the election campaign the Coalition pledged to support the full roll-out of the NDIS, with Tony Abbott stating:

"Too many Australians, people with disability and carers alike, have been left behind. They deserve so much better. That is why our support for the NDIS is unequivocal. If elected, the Coalition will honour the Commonwealth agreements with New South Wales, Victoria, South Australia, Tasmania, Western Australia, the Australian Capital Territory and the Northern Territory for launch sites. The Coalition will honour the Commonwealth agreements for the full state-wide rollout with all the states and territories."

Source: NDIS Ready-Bulletin

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Veteran Clients

Call now to speak to our friendly clinical nurse specialists. Get free expert advice on which products will best suit you or your loved one’s needs.At Independence Australia we care for your well being.

Free Advice & ConsultationFor continence, urology and wound care issues

For assistance call 1300 788 855 or email askthenurse@independenceaustralia.com

As we head into the holiday season it is time to remind you that if you are going away be sure to let us know.

Important!

Veterans Home CareIndependence Australia can offer the following services through the Veterans’ Home Care program:

• Domestic assistance • Personal care • Respite • Home and garden maintenance

If you require a new service in any of these areas contact Veterans‘Home Care directly. Ring 1300 550 450 and ask for the Veterans’ Home Care program.

If you have any queries regarding your current service please contact Independence Australia on 03 9418 0472. Alternatively contact Sue Wilson directly 03 9418 0448.

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General News

Accessibility WeekendThe weekend of the 16 -17 November saw Victoria’s most popular tourist attractions open their doors for Accessibility Weekend 2013. Organised by Independence Australia and now in its ninth year, the event provides free access for wheelchair users and a carer to over 20 of the region’s top attractions.Celebrating the importance of access and inclusion for people living with a physical disability, Accessibility Weekend is held as part of the national campaign, Spinal Injuries Awareness Week (10 - 17 November). Across the weekend attractions including The National Gallery of Victoria, Rod Laver Arena and SEALIFE Melbourne Aquarium saw many wheelchair users embracing Accessibility Weekend. Everyone that took part really enjoyed being able to access such a variety of venues for free and safe in the knowledge that they were wheelchair friendly. “A great chance for us to visit attractions that we normally could not pay for!”“It made me feel special. It was a day for me and people like me.”

“I enjoyed getting to tour Rod Laver Arena and seeing aspects no one gets to see.”We asked those of you who visited an attraction as part of Accessibility Weekend to send in their snaps for a chance to win a $100 VISA gift card. After looking through some fantastic pictures from across the weekend we are pleased to announce the winner as Paul Micallef. Paul spent the day at Maru Koala & Animal Park in Grantville near Philip Island and sent in this wonderful snap - congratulations Paul!

Hi!

My name is Captain Independence. I’m very excited to be working with Independence Australia – I plan to help raise awareness about accessibility, the importance of independence and what it’s like to live with a disability.

Above is a photo of me, from October, meeting some students from Tyabb Primary School when I was there promoting the event Steps for Independence.

By the way, if you see me at one of Independence Australia’s events – come up and say hello – I love meeting new people!

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Meet Our People

Supporting Consumer Choice and Control

At Independence Australia we know that when given the opportunity, consumers who manage their own support services (either directly or through a chosen advocate) can develop a service that reflects their individual preferences and values to an extent unmatched by anyone arranging services on their behalf. Additionally, providing consumers with the option of managing and directing their services shows Independence Australia’s acknowledgment that our consumers are the best judges of their own needs and the best decision-makers on how these needs get met - an acknowledgment too often not made.At Independence Australia we value the importance of enabling our consumers to have a wide range of opportunities to control how their services are delivered. Some wish to have maximum control over their support services whilst others prefer for Independence Australia to organise their supports as much as possible in consultation with them. When a new consumer first enquires about services one of the first things to be done is to establish a program and plan. The focus at this stage is to establish what the person wants and work out how we can work together to achieve this.Independence Australia has this year introduced a new

model of service delivery to facilitate improved choice and control for our consumers, as well as increased communication between consumers, their families, support staff and head office. Our Lead Support Workers work directly with consumers delivering one-to-one support. This direct approach allows participants greater control and provides an increased opportunity to create a service that is tailored to individual needs. Armed with a comprehensive and across-the-board understanding, our Lead Support Workers are able to effectively mentor Support Workers to provide consumers with an individually tailored quality support service. Our Lead Support Worker’s provide liaison, mentoring, training, rostering coordination and leadership to support workers on the core teams of a cluster of consumers to ensure the provision of quality individual support services. We are currently rolling out this model of service delivery to a wide number of our consumersOf course we are always interested to hear how we can create new opportunities to maximise control and choice for our consumers. If you have ideas of how we could continually improve choice and control or find out more about the Lead Support Worker model please contact Roberta Buchanan, Manager In Home Services on 9418 0470.

Supporting clients in the workplaceJeanette Lee has been working at Yooralla for 21 years and gets work based attendant care from Independence Australia. She works 4 days a week and gets one hours support twice a day. This gives her capacity to work full days and also allows some administrative support. Her current title is ‘Client Rights and Empowerment Practitioner’. In this role Jeanette provides training to clients on rights and speaking up – giving people tools to become effective self advocates. When Jeanette was first looking for work she was registered with CRS Australia, then known as the Commonwealth Rehabilitation Service, who provided her with some financial assistance to undertake her studies. She had completed a social work degree at Monash University and a Bachelor of Arts (Psychology and Italian) at Melbourne University. She ended up finding her first job herself, although CRS was able to provide really practical support in a number of ways. They paid for books and also for driving

lessons and vehicle modifications for her first vehicle. Jeanette has some great advice to people with a disability who are just starting out on their job search activities.- believe in yourself - take the initiative/network - get involved in groups/committees- volunteer - try and get a tertiary qualification- be prepared to do a bit extra (you may initially have to prove yourself)

- there are still attitude barriers so it’s important to be persistent and positive and to present well with confidence. Focus on your strengths and what you CAN do.

Supporting choice and control for people with disabilities stems from the realisation that, too often, people with disabilities are denied the opportunity to exercise choice and control over some of the most basic and intimate aspects of their day-to-day lives; for example the personal care support that they receive. .

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Our News

Delivering new workforce models

CWI provides employment and training solutions to three groups, including:

IndustryCWI works with industry service providers to reduce agency costs and develop a sustainable workforce successfully addressing labour shortages, service quality, plus the growing complexity of service demand.

Individuals with disabilitiesCWI empowers individuals to choose and manage their own support workers (see story below). We do this by taking care of the employment administration arrangements which includes rates of pay, training, WorkCover, insurance, and compulsory superannuation.

LearnersAs part of the workforce solution, CWI provides the opportunity for entry into a rewarding career in the disability, home and community care and aged care

Host employment

sectors. We do this by offering nationally accredited and short course training, traineeships, professional development and up skilling opportunities. Individuals are also encouraged to participate in upskilling activities outside of the Group Training model. CWI also work with key government and industry groups to pioneer innovative projects through the Innovations Hub to inform future sustainable employment and training models.To learn more you can contact the CWI team:-Anne Stasiak - 03 9418 0476 or anne.stasiak@independenceaustralia.com Suzanne Chavasse - 03 9418 0435 or suzanne.chavasse@independenceaustralia.com.

Maree Ireland has cerebral palsy but has never stopped her having control over her own life, including the type of care she receives.And Maree has found Independence Australia a valuable resource giving her power over her own life and freedom of choice: “I have always been independent but having cerebral palsy does mean I need to use a wheelchair and a device for communication. I also work four days a week for a disability advocacy group. I do need support with personal care, such as the dressing, meal assistance, housework, and getting out to the shops or appointments. In 2011, I became aware of Independence Australia’s Host Employment Model. For someone passionate about managing my own care, this was like discovering a pot of gold. Using host employment has many advantages. For example, I have chosen to receive care from a trainee, enabling me to get more support hours. I feel I am also contributing to a young person’s life by giving them experience in disability. Managing my own support means I can match worker hours with my lifestyle. I also know how much of my

funding is being spent so I can manage it just like a household budget; with the advent of DisabilityCare I think this is something people with a disability really need to get a grasp on.To be honest at first I found managing my own support a bit daunting. I was fearful it would be a lot of work and I would mess up invoicing but my concerns were unfounded. If you have a disability I would strongly recommend you consider host employment. It could be one of the best decisions you have made which will improve your quality of life."For more information contact CWI on 1300 360 185.

Independence Australia has recently relaunched the training department under the brand Community Workforce Innovations (CWI).

It is easier than you think.

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Recreation

BocciaThirteen years to the day since the 2000 Paralympic Games, the world's best Paralympic athletes once again descended on Sydney Olympic Park for the 2013 Asia and Oceania Boccia Championships in October.Thirteen years to the day since the 2000 Paralympic Games, the world's best Paralympic athletes once again descended on Sydney Olympic Park for the 2013 Asia and Oceania Boccia Championships in October.The largest event of its type to be held in Australia since the 2000 Paralympics, the 2013 Asia and Oceania Boccia Championships saw 78 athletes from 9 countries compete for twenty-one medals across seven classes.While Boccia can be played by anyone, it is particularly beneficial for people with severe cerebral palsy, post polio syndrome, locomotor disabilities such as muscular dystrophy, quadriplegia or multiple sclerosis and those with limited movement due to age.Boccia tests each competitor’s degree of muscle control and accuracy. Seated, athletes throw, kick or use a ramp to propel six leather balls as close as possible to a white ball which serves as the jack (target)."This highly skilled and strategic game was originally developed from bowls and bocce as a sport

Meet Jean-Paul La Fontaine Born into a family with a long history of sport and natural talent, Jean-Paul was always destined to head down the sporting path.As a youngster Jean-Paul threw himself into sport, playing everything from cricket and AFL to basketball and golf.As his muscular dystrophy worsened however, he had to give up the sports he loved until he found boccia. Competing for the first time in 2012, Jean-Paul is now hoping he can compete for Australia on the world stage, with Rio 2016 ultimately in his sights.

suitable for people with the highest level of physical impairment but has grown to be more than just a pastime," explains Boccia Australia President Robert Marshall. "It is a highly competitive game that is fascinating to watch."“For many athletes with physical impairments, their sporting pathways can be limited. Boccia is a sport that can be played and enjoyed by anyone, whether it is at a local club level or at an international level,” explains Paul

van Oosten, Pathway Development Coordinator at the Australian Paralympic Committee.Featured at Independence Australia’s ‘Celebrating Independence’ days for the last two years, boccia is a fun and easy sport to get involved with whether it is just playing with friends or aiming for the international stage.The best way to learn about boccia is to see it in action and you can do this by watching some of the best matches from the Championships. Visit www.boccia.para-sport-live.com/ to tune in to see the thrilling games unfold and watch some of the most skilled athletes in action!To find out more about the sport, get involved and find your nearest club, visit: www.boccia.com.au or email info@boccia.com.au.

Photos provided courtesy of the Australian Paralympic Committee/Jeff Crow

Photo provided courtesy of the Australian Paralympic Committee/Jeff Crow

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Recreation

Lorne trip: To Rome with loveHaving conquered the challenges of her first holiday away for many years, a trip to Lorne with Independence Australia in mid-2012, Guiliana Marogy, was prepared to take on the world, or at least Italy. Guiliana travelled on her own to visit relatives – some of whom she had never met and others she hadn’t seen since childhood.But Guilana, who has limited mobility which makes walking difficult and painful due to post-polio syndrome, found the trip on her own arduous in a historic country with cobbled-stoned streets and plenty of stairs. However, the connection with family made the eight week trip deeply significant – especially since Guiliana’s mother passed away recently.”After 43 years I finally decided to go back to my homeland and meet my countless aunts, uncles, cousins and second cousins,” says Guliana. “It has been the best decision of my life. I now feel complete, and I would do the 24 hour flight and week of recovery again in a heartbeat.”“I could not have done it without the support and advice of Independence Australia.”However, Guiliana does have is a word of caution. “I guess I learnt a lot going overseas on my own with a disability. I should have asked for help more often and in some ways planned ahead more.” For example, Guiliana booked into a hotel to discover when she arrived there were stairs to her room.“I was thrilled to visit relatives whom I hadn’t seen since I left Italy as a child more than 50 years ago. Others I had

never met at all, so that was very special.”Some of Guiliana’s tips for people with disabilities keen to travel include the need to:

• Plan ahead to make sure you have good access, such as ramps, to key attractions.

• Ask about distances at airports before finalising arrangements.

• Avoid lengthy stop-overs if possible.

Let your needs be known and ask for help if you need it.The trip to Lorne run by Independence Australia and made possible thanks to the generosity of our donors, has led to others also venturing out despite disability with at least one person who enjoyed the time away set to go on a cruise for the first time in 2013.The most recent trip was held in October and here are a selection of quotes from the participants.“Our last trip away was in 2003 to QLD and it was our honeymoon. Being on the beach at Lorne brought back a lot of my honeymoon memories, Oh My........ it was a lovely trip. My wife, Leanne and I are extremely grateful to have been chosen to come along to this well organised holiday. I would also like to take this opportunity to thank Independence Australia, their support workers and the wonderful donors who made this trip possible. Leanne and I are already putting our money away to save for another trip to Lorne sometime next year. Thank you Independence Australia!!!” “Thank you for everything, I really enjoyed the beach”“I loved going away to Lorne, It was really good and thank you to the carers who looked after us” all the IA staff who made the trip possible”“I thought the holiday to Lorne was the best holiday I have ever been on”.

A community website for people with spinal cord injury in Victoria and throughout Australia. Visit the website for comprehensive information about spinal cord injury, how to keep healthy, how to access supports and services and tips for returning to work and leisure and engaging in the community.

Register now to contribute on discussion forums and comment on articles on the website.www.spinalhub.com.au

Giuliana, in the red top, with her family in Italy

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Our News

Motor vehicle stamp duty tax, TAC and registration fees for wheelchair vehiclesGary Allsop (Honorary Director Spinal Cure Australia)

Recently I was purchasing a new vehicle when I stumbled upon a letter from the former State Minister for Transport Peter Bachelor in 2006.

The letter states: “In accordance with section 223C of the Duties Act 2000 no motor vehicle duty is payable on private vehicles that are specially converted to provide wheelchair access capable of carrying at least one occupied wheelchair. For such vehicles to be exempt from duty, they must be registered in the name of the incapacitated person, or the parents or legal guardian of an incapacitated person who is a minor.Such vehicles are also exempted from registration fees, in accordance with Schedule 4 of the Road Safety (Vehicles) Regulations 1999. I also confirm that vehicles designed solely for the use of an incapacitated person and which will not be used to convey any other person, are also exempt from motor vehicle duty and registration fees.” So what does this mean? If you intend buying a new vehicle to have converted either to drive or carry a wheelchair, the stamp duty that might be applicable to that vehicle is refundable. You go about retrieving that money by registering the vehicle as a wheelchair vehicle. After you have the registration papers you can e-mail your details to returns@sro.vic.gov.au at the State Revenue office or you can call them on 9628 0000 for further information. You may be asked to provide further information, such as a statutory declaration.

Currently the Vicroads legislation is such that if you are a pensioner with a wheelchair vehicle you pay half of the TAC fee and the registration fee, but you don't qualify for both. After I received this letter and read it through I queried Vicroads about the fact that considering I am a pensioner I should pay half the TAC fee and no registration fee. They agreed, but stated that there wasn't a code in their system that covered a person that came under both categories. I found this hard to believe that they wouldn't consider that someone in a wheelchair might also own a vehicle and be a pensioner. It has been a very long process but after writing a letter to their policy manager and many telephone calls, Vicroads have now written such a policy under the code PT into their system. So if you are a pensioner and own a wheelchair vehicle you should now pay half the TAC fee and no registration fee. If you own a wheelchair vehicle and are working you would pay the full TAC fee but no

registration fee. This also applies if you have a converted car and ride in the back of it sitting in your wheelchair. Please bear in mind your vehicle must be registered as a wheelchair vehicle and you may have to present your car at a Vicroads depot for inspection or get your doctor to write a letter stating your condition and what year it occurred. Additional to this you may be eligible for a refund from Vicroads for all the registration fees only you have previously paid dating back to 2004 regardless of whether you are a pensioner or not, providing your vehicle is set up to carry a wheelchair passenger.

To see if you qualify for such a refund under any of these circumstances call this specially allotted number 03 9854 2329 and you will be put through to Customer Solutions to talk to a Vicroads representative as to your eligibility. You may have to leave your details on an answering service for them to get back to you.

Previously when this article was first published several people e-mailed me saying that no one got back to them from Vicroads. I have spent the last 12 months and many phone calls to Vicroads correcting their system and they have now assured me that this answering service is now fully operable and they will definitely get back to you to consult your eligibility for this concession.

If you are a pensioner quote the Code PT if you are not a pensioner you may have to make an appointment to present your vehicle at a Vicroads depot to verify your vehicle is modified to carry a wheelchair. I sincerely hope this helps people reclaim what is rightfully theirs and if you have any problems e-mail me at madge@alphalink.com.au

Please bear in mind this only applies to Victorian residents, you might like to take up this matter with your states authorities and see if the same rules apply and if it doesn't pursue the matter as I have.

This information is very important for you to read if you have a vehicle purpose built or modified for carrying a person in a wheelchair, or you are intending in buying a new vehicle for said purposes and particularly if you are a pensioner.

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Psychology and Counselling

Assertiveness Workshops: Learning to Stand up for yourselfAfter the success of the May workshop in Collingwood, the Psychology and Counselling team conducted two more “Stand up for Yourself” workshops.The facilitators, Jenny Koadlow and Daniel Quin wanted to make the workshops accessible to people right across Melbourne. The first workshop was held at the very welcoming Glen Park Community Centre in Bayswater in early September and the second was held in sunny Sunshine, in October. The aim of the workshops was to help the participants understand ‘What is assertiveness?’, and ‘How they can be more assertive?’ Styles of communication such as passive, passive-aggressive and aggressive were also explained. Jenny and Daniel’s role plays made these topics very accessible, practical, engaging and at times even amusing! The participants reported that they appreciated the way the workshops were designed to include everyone in the discussion in a warm and welcoming manner. In this way all participants felt safe to share their personal difficulties and practice using assertive communication techniques in pairs and small groups. Each workshop was conducted over two sessions, one week apart. This gave the participants time to consider the material presented in the first week and return the following week with questions and comments. It also meant that two delicious lunches were provided, free of charge to the participants.

Feedback from the three workshops for 2013 was that the participants appreciated the information and enjoyed the two days. Future workshops are planned for 2014. The workshops have been made possible due to funding from The Flora and Frank Leith Charitable Fund. The workshops are aimed at people with a disability. If you know anyone who might benefit from participating please contact Jenny Koadlow on 03 9418 0410 or email jenny.koadlow@indepenedenceaustralia.com

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Returning to work following a disability is often a challenging task. Presented below is a real example about a person who confronted many problems upon returning to the workforce but managed to find effective ways to overcome them.

returning to work – a case study

In 1995, Raymond was diagnosed with Arnold Chiari malformation and syringomyelia, a congenital disease which causes chronic pain, fatigue and incapacity due to the growth of a cyst on the spinal cord, squashing the spinal cord. Raymond underwent major surgery to decompress the cyst to arrest any further degradation, but he then experienced increased stiffness and pain, particularly in his upper body. The impact of his incomplete spinal cord injury consequently started to interfere with his life, including his ability to perform his job as a full time Information Technology (IT) consultant. Raymond realised, in 2000, that he was not able to work in IT given his physical challenges. Raymond was then unemployed and unsure of what he could do for work. He researched occupations in career

text books and journals at the library and set some criteria to help narrow his choices down to employment that would suit his interests and skills, his physical capacity and employment needs. After exploring different jobs, Raymond chose to retrain to become an audiologist, a hearing health care professional. Raymond made plans to complete a degree in audiology at Melbourne University. Raymond indicated that he considered an audiologist job met his employment criteria. Raymond mentioned that there was usually a high demand for part time work within the audiology industry and this would provide him with flexibility to manage his chronic pain, medical appointments and work commitments. Raymond encountered a number of challenges throughout completing the course including failing

university subjects and having difficulty completing timed exams due to ongoing pain. Despite these challenges, Raymond successfully completed the degree and secured part time work as an audiologist in 2003. Raymond indicated that he still finds the “invisible nature” of his incomplete spinal cord injury can be difficult to convey in the workplace, as restrictions with stamina and work output can be negatively perceived. Raymond believes employer support is integral in managing work with a disability, along with utilising formal support services (e.g. occupational therapy). Raymond also indicated that as well as the financial and social incentives of working, being able to help others and contribute to the community are major benefits of being employed.

Psychology & Counselling

Independence Australia's Psychology Service offers free, confidential counselling for people with physical disabilities and their family members. Although our speciality is working with people who have spinal cord injuries and their families, we frequently work with people who have other physical disabilities such as polio, cerebral palsy or multiple sclerosis.Our experienced psychologists are available for individual, couples or family counselling. We also run various support groups for people with spinal cord injuries and their family members. People may attend for a wide range of concerns, including:

• Depression • Anger and frustration• Stress and worry• Grief and loss

• Relationship issues• Adjustment to living

with a disability• Self-esteem

• Thoughts of suicide• Pain and fatigue• Social isolation

and more.

IA SummerInform 2013 (DEC-JAN).indd 6 30/11/2012 1:30:17 PM

To enquire about this service call 03 9418 0474

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Meet our people

Meet our Case Management and Outreach Support Services team ObjectivesThe Independence Australia Case Management and Outreach Support Services enable clients to live as independently as possible in the community. The following goals can and have been achieved:

• Assisting with funding applications for recreation/attendant care hours/equipment (Disability Support Register, other agencies, philanthropic trusts)

• Supporting people with disabilities to access transitional or long term rental accommodation (i.e. Office of Housing) and supporting them to maintain their tenancies thereafter.

• Assisting people to negotiate with a range of other service providers e.g. Councils, Centrelink, hospitals, schools etc

• Advocacy• Liaising and negotiating support and services with

clients who receive compensation through TAC or WorkCover insurance agencies.

EligibilityAny person with a disability or older person who lives in the Melbourne Metro region can apply for case management services through Independence Australia. Referrals can be made by individuals, family members, carers, health professionals and other disability service providers. Independence Australia receives block funding provided by the Department of Human Services, which enables our service to be free of charge.

For further information, or to discuss possible referral, please contact Melissa Sahyoun or David Maxwell on 1300 704 456.

Melissa and David.

Have you ever been interested in joining a social group but didn’t know where to start? Would you like to break down social barriers and build self esteem?

From our Recreation Coordinator

Well, look no further. Independence Australia has a recreational department that can help you get started.

What do we offer?The program is designed to deliver person centred planning by;

• Working one on one with people who need a little help to take the next step

• Develop an Individual Support Plan (ISP) to set recreational goals

• Make referrals to appropriate servicesRecreation means different things to different people and can vary depending on one’s ability and their support network they have around them.

In the past we have assisted people in various areas including;

• Mobility and travel, • IT and computer training, • referrals to social groups, • community engagement, • holidays, • music and dancing, • art and craft• independence to live a better life in the community!

For further information, please contact the recreational coordinator Lisa Edwards on 1300 704 456 or email at lisa.edwards@independenceaustralia.com.au

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General News

Spinal Cord Injury Australia Independence ExpoThe Spinal Cord Injuries Australia (SCIA) Independence Expo is back for its second year on Saturday 5th April, 2014.Discover an extensive range of disability products, services and information all under one roof. Taking place at Australian Technology Park in Sydney, this event is specifically for people with a spinal cord injury and other similar physical disability. The expo will feature practical workshops, daily living aids, disability services, product demonstrations, travel and recreation information, equipment to trial, rehabilitation services and much more. Entry is free and there is funding available to help people attend this fantastic event. The Independence Expo provides the unique opportunity for people to speak directly with manufacturers, service providers and information sources, allowing people to make informed decisions about the types of equipment and services that will meet their needs and facilitate their independence. “Our vision is a society without barriers for people with a spinal cord injury and other physical disability. The SCIA Independence Expo provides the resources that people can use to maximise their independence in their homes, workplaces and communities,” said Peter Perry, CEO of SCIA.To ensure people don’t miss out on attending the Expo, SCIA is offering financial assistance to people with a spinal cord injury or similar physical disability. For those living in regional NSW or interstate, up to $500 is available and for people living in Sydney, up to $100 is available. Travel, accommodation, care or equipment hire required to attend the expo will be reimbursed, people simply need to be a member of SCIA and supply valid receipts with any application for reimbursement.

Please visit www.scia.org.au/expo to register your attendance and to learn more about the expo and the funding available. What: Spinal Cord Injuries Australia Independence ExpoWhere: Australia Technology Park, Locomotive Street, Eveleigh NSW 2015When: Saturday 15th April 2014, 10am – 5.00pmCost: Entry is Free

Independence Australia 2013 Consumer Satisfaction Survey Independence Australia would like to thank you for your participation in the 2013 Consumer Satisfaction Survey. Your input enables us to provide services that are responsive to your support needs as we strive to improve the quality of our service and the safety of our environment.Over all your feedback has been positive. However, Independence Australia responsiveness to service and support enquires could be addressed more promptly. Independence Australia is working on communication between you and our staff to ensure your concerns are actioned efficiently. At Independence Australia we encourage you to contact us with any feedback through our staff or through our web site www.indpendenceaustralia.com

14 Inform

General News

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Steps for IndependenceStudents at Our Lady Help of Christians (OLHC) school in Eltham were joined on their walk by Melbourne Vixen netball star Kate Moloney and Independence Australia event mascot ‘Captain Independence’. Students at OLHC were excited to be involved and took 169,000 steps together. After the event the grade one and two students wrote in to tell us what they thought of the event.“Hello Mr. Captain Independence. I want to say thank you for coming to our school. I felt really, really surprised that I did over 8,000 steps. You are the best!” - Tom

“Dear Kate. Thank you for coming. I really enjoyed the day. That was the best day in my life. I hope you had a great day too.” – Alana

“G’day Kate. Thank you for coming and helping us walk for an hour. We walked about 169,000 steps. It didn’t feel like that many steps. If I was a quadriplegic I wouldn’t be able to jump on the trampoline.” - Josh

Tyabb Primary School also participated and students dressed up as heroes for their walk! We think they really are heroes, raising over $300 for Independence Australia.

Students recently stepped out to raise disability awareness and funds for Independence Australia by participating in Steps for Independence. The event challenged school students across Victoria to step out as a class and count their steps for just one hour.

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General News

1718 26

Vale bethbrodribb

polio day 2013

holidayingin nZpolioPerspectives

A busy year for the PRG

The PRG held its final meeting on Friday 15 November for what has proved to be a busy and productive year. A follow up issue was feedback on the streamlined information kit for people calling Jen Sykes for polio info or for Support Groups to have on hand for newbies. Consensus was that a frontispiece needs to be added with a rundown of contents, also a sheet for family members. We always have had a booklet to help families understand post polio but it is time to update that on our changing conditions (For example, one of the group mentioned her husband was having trouble coming to terms with her need for a walker. That of course sparked discussion on pros and cons of walkers, how best to use them. An issue for Polio Day as one of my concerns has been seeing people using walkers developing bad posture. Last thing we need is additional lower back problems).A card has been developed to go out with our new poster, offering health professionals the directions to Polio Australia’s website and it’s Clinical Practice Module.

Polio Day 2013The wrap up on Polio Day at Geelong was excellent with two

members of the group saying it was the best polio day they’d attended and the first to encourage them to adapt their lifestyles. Our thanks to the Geelong group for making us so welcome in such a splendid venue. Some of the presentations are available. Contact Jen Sykes. The session on nutrition was cited as particularly effective, which made publication of our cookbook timely. While we’d love to send copies freely to those people who kindly contributed recipes, the publication is a fundraiser and we hope contributors will buy copies – several in fact!Polio Day next year will be held somewhere in Melbourne CBD, continuing the more relaxed style of presentations. We are over being talked at! A suggested theme was ‘Bouncing Back’ as a natural extension of this year’s ‘Changing Gears’.

RepresentationIt is time to review representation on the PRG, three members are due to stand down, two have indicated willingness to renominate. Work on the PRG is not arduous, there are four meetings a year at Independence Australia, Collingwood. Rural members take the opportunity of the trip to stay with family in Melbourne or just to have a break. Phone in is also possible.Convenors of each support group will

Fran Henke, chair

meet again on February 14, 2014 to steer the course for the year.Bev Watson was nominated to be the Polio Australia delegate and has accepted. Two delegates from Victoria/Independence Australia attend PA meetings in Sydney and take part in regular teleconferences. Information Services officer Jen Sykes is the second member of the PA Management Committee.Independence Australia has decided to close the Special Purpose Post Polio Fund but generously has topped up its successor. The PRG will continue to manage fundraising and seek donations to continue resourcing polio specific information, education and functions. We may revisit the guidelines to suit current circumstances.

Our booksWe have asked Independence Australia if the Commendation for ‘Iron Wills’ as well as copies of both our recent books can go on show in the foyer. Another potential outlet is Polio Services Victoria at St Vincent’s Hospital. This will be raised with Russell Anbiah, the new physio and co-ordinator of PSV. Copies of ‘Iron Wills’ have been donated to various council libraries and relevant council departments.

Continued on page 24

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Support Group News

useful Information

Polio Australia03 9016 7678

Polio Services Victoria

03 9288 3900

Post Polio Victoriawww.postpoliovictoria.org.au

Breakdown Service (RACV)131 111

Carers Australia1800 242 636

Centrelink (Disability)132 717

Centrelink (Aged)132 300

Commonwealth Respite & Carelink Centres1800 052 222

Council of the Ageing (COTA) 03 9654 4443

Disabled Motorists Australia03 9386 0413

Independent Living Centre03 9362 6111

TADVIC03 9853 8655

State-wide Equipment Program1300 747 937

Polio Support Groups

BallaratWednesday (Bi-monthly)Bayside (Hampton) First Tuesday (Monthly)BairnsdaleBendigoSaturday (Bi-monthly)EasternThird Saturday (Monthly)GeelongFirst Monday (Monthly)

EchucaHumeSecond Saturday (Monthly)Knox-Yarra RangesSaturday (Bi-monthy)Mornington Peninsula Second Saturday (Monthly)Northern (Coburg) First Saturday (Monthly)Shepparton

South Eastern Second Saturday (Monthly) TraralgonThursday (Bi-monthly)WarrnamboolFourth Tuesday (Monthly)

For more information regarding the groups, contact Jen Sykes on 03 9418 0452

South Eastern Post Polio Support GroupThe South Eastern Region Post Polio Support Group presented the Polio Reference Group with a donation of $230 in memory of their long time member and Polio Reference Group representative Michael Judson. The money will be directed into the new Polio Reference Group resource to be used to support future polio day events and other awareness and educational activities and projects. We are very grateful to the South Eastern group for their generosity.

Odd sized shoesI have heard from a woman who has some pairs of shoes that belonged to her sister, now deceased. They are left shoe 8 ½ and right shoe 5 ½.There are several pairs in a variety of colours – all handmade leather. They are not built up.She is cleaning up and thought rather than throw them out that there might be someone out there who can use them. Let me know if you are interested and I’ll put you in touch. 03 9418 0452 or jenny.sykes@independenceaustralia.com

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Polio Perspectives

Polio Network victoria websitePolio Network Victoria has a new web address.www.independenceaustralia.com/polio Here you will find information about PPS/Late Effects of Polio, support groups, newsletters from Victorian groups and interstate networks and much more. Our aim is to expand the information available and the next project will be to include links to information sheets.

All donations of $2 or more are tax deductible.

My details

Name

Address

Phone

Email

Payment

Visa MasterCard Amex Diners

Cardholder Name

Card Number

Expiry /

Signature

Cheque Money Order (Make payable to Independence Australia)

Please send completed form to Jen Sykes Jenny.Sykes@independenceaustralia.com Independence Australia, 208 Wellington Street, Collingwood vIC 3066

IA WinterInform 2013 (AUG).indd 25 30/07/2013 8:55:59 AM

Polio Network Victoria WebsitePolio Network Victoria has a new web address:www.independenceaustralia.com/polioHere you will find information about PPS/Late Effects of Polio, support groups, newsletters from Victorian groupsand interstate networks and much more. Our aim is to expand the information available and the next project will be to include links to information sheets.

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Polio Perspectives

Vale Beth BrodribbBeth Brodribb, the first co-ordinator of the Polio Network Victoria died on September 26, 2013.Beth, who was 88, was asked to help with the network following a public meeting in October 1987. She had been working with ParaQuad’s sheltered workshop.Beth was given the names of polio survivors from the meeting and the network grew quickly. Her job was to gather and disperse information. Copies of material Edith Hall brought back from the Fourth Polio Survivors Conference in Missouri, USA, were sent interstate in the hope of encouraging establishment of self-help groups all over Australia.Beth had managed to contact 400 polio survivors, publish the first newsletter and organise a seminar that attracted people from all over the country. She went to St Louis for an international polio conference and also visited the British Fellowship in the UK. Like Edith, she returned with valuable resources and information.”Her funeral service was held at Holy Trinity Kew, attended by family, friends and polio survivors. She is survived by two daughters, and grandchildren. Her beloved husband Jim, died in the 1980s.

In her tribute, Eastern Polio Support Group’s Trish Malowney wrote that Beth’s daughter Pam was touched by the number of people who told her, and other family members at the funeral, of the impact Beth had in their lives.“When Beth was working at ParaQuad, she received many distressing phone calls from people who were starting to feel the effects of Post Polio Syndrome. Realising that there was no supports available, Beth was instrumental in starting several groups around Victoria by placing ads in local newspapers asking for people who had had Polio to attend a meeting with the aim of setting up a local peer group. “Beth chose to become a member of our group, and encouraged us to retain our independence by being an incorporated association, with our constitution and rules, and she attended meetings until she became too frail to do so. Pam has told me that the Eastern Polio Support Group meeting was a fixed event in her diary”, Trish Malowney wrote.As Beth grew older, and no longer able to drive, Trish often drove her home from meetings, although she was happy to catch taxis. Trish said she got to know Beth better on these short trips as “a gentle, kind woman, with a very sharp wit, and with a depth of knowledge and understanding”. Beth Brodribb was awarded Life membership of the Eastern Polio Support Group and remains forever in our hearts and history as instrumental in bringing so many of us together.

Vale Janet Powell

A secondary teacher in country high schools, she was a founding member of the Australian Democrats in 1977.Ms Powell led the Democrats briefly from 1990 to 1991 but after internal ructions, quit the party in 1992.After leaving Parliament, Ms Powell focused on volunteer leadership roles in health, women's issues and services for the disadvantaged.She was appointed a Member of the Order of Australia in recognition of her service to the Parliament and to community, particularly through her leadership of YWCA Victoria.

In the late 1990’s she served on a community advisory committee for AQA Attendant Care and established the Post Polio Foundation.She was an inaugural appointee to the Victorian Honour Roll of Women in 2001, for community leadership.More than 200 people attended the celebration of her life at the city of Manningham convention centre. The service was attended by former senior Democrat politicians as well as senior current and former Green Politicians.

Former Australian Democrats leader and polio survivor Janet Powell died, aged 71, on September 30.

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Polio Perspectives

Polio Day 2013Fran Henke

Our Polio Day surrounded by sea

Planning for Polio Day 2013 after the special 2012 day at the zoo celebrating the 25th year of PNV, was a challenge. We needed to go regional (deciding on Geelong) to give country polios a turn and to ensure we had an equally pleasant venue as was the zoo.When committee members inspected The Pier, totally accessible, surrounded by water, we knew we deserved it. So it turned out, The Pier was as popular as we hoped it would be. More than 100 attended on October 26 from as far as Warrnambool, Phillip Island, Traralgon, Shepparton.

We wanted to offer a program that was truly relevant to our changing needs and judging from the feedback forms on the whole, the theme proved useful.Respondents noted that Eating For Energy was the most popular presentation. Our expert Karen Binks understood our needs and spoke engagingly about nutrition and her work as an exercise physiologist.Jen Sykes launched our new cook book: The Polio Day Cookbook, fine food for the fatigued, now on sale for $15 plus postage. Proceeds go towards funding other information and educational projects. Please buy several – ideal Christmas presents!

Geelong orthotist Ben McMurtrie, next talked about developments in bracing and was followed by Bayside Polio’s co-convenor Peter Willcocks, who is a member of the Aids and Equipment Action Alliance. Peter offered a valuable historical view as well. The seated Tai Chi workshop relaxed us before lunch. Everyone had a try and enjoyed seeing how the basic movements demonstrated by Alice and Gail, fitted into the discipline, which grew out of martial arts.After lunch, Polio Services Victoria’s occupational therapist Margaret Petkoff spoke about fatigue. Margaret has been running fatigue workshops since this is one of our main, persistent and often unexplainable to others, problems.The last sessions of the day focused on travel.

Parks Victoria’s John Kenwright spoke about the work PV has been doing in making parks accessible with various all terrain wheelchairs. Its website http://parkweb.vic.gov.au/explore, offers details of what’s possible and where.

Karen’s discourse on healthy eating

I eat because I’m hungry, not because I’m mad

I eat because I need energy but not because I’m sad

I eat in the company of others, and share the joy of food

But I don’t need to hide away and eat in shame, to try to soothe my mood

I balance out my everyday meals with vegies, protein and a little good fat

And sometimes I can enjoy a small amount of chocolate

I am mindful of my portion sizes and try not to overeat

And I can indulge in sometimes foods

Not as a daily habit but as a rare treat

I have no desire to feel regret for the food choices that I make

So for me it is the broccoli

Rather than the chocolate cake.

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Polio Perspectives

Most enjoyable was Bev and Maxine’s story of their trip to Ireland with great pics and advice on how to manage.From the 28 feedback forms received, 23 indicated they will take further follow up action on the topics featured; 24 indicated it was convenient to attend on a Saturday; 24 indicated it was convenient to attend in regional Victoria.

This will be a hard act to follow and you can see how much we rely on the feedback forms in planning Polio Day. If anyone still has forms it is not too late to help us plan Polio Day 2014.

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Polio Perspectives

Transfer of funds to Polio AustraliaIndependence Australia has made a one-off distribution of $20,980 to Polio Australia, representing the balance of the Special Purpose Post Polio Fund, and as a result, Independence Australia will no longer hold funds for these specific purposes.In addition, Independence Australia is providing an equal amount from its own reserves to the Polio Reference Group, as a separate distribution in support of their ongoing activities.Independence Australia CEO, Peter Turner stated that “as the Auspice of the Polio Network Victoria, Convenor of the Polio Reference Group and a Member of Polio Australia, we are very pleased to be able to distribute these funds to assist both groups in their future endeavours”. He explained that, “the use of the funds is solely for the purpose of developing educational material and to support each organisation to conduct a Post Polio educational event”.Independence Australia will continue to auspice Polio Network Victoria, convene the Polio Reference Group and will remain a Member of Polio Australia through its two representatives on its Management Committee.

Chair of the Polio Reference Group, Fran Henke, welcomed the decision and looked forward to continuing to raise much needed funds for the development of educational material and to run its annual Polio Day event.Chair of Polio Australia, John Tierney OAM also welcomed the distribution of funds for Polio awareness and education purposes.All enquiries should be directed to Jen Sykes on 03 9418 0452.Proceeds from the sales of ‘Iron Wills’ and ‘Fine Food for the Fatigued' will be directed to the Polio Reference Group’s funds.

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Polio Perspectives

Polio Network victoria websitePolio Network Victoria has a new web address.www.independenceaustralia.com/polio Here you will find information about PPS/Late Effects of Polio, support groups, newsletters from Victorian groups and interstate networks and much more. Our aim is to expand the information available and the next project will be to include links to information sheets.

All donations of $2 or more are tax deductible.

My details

Name

Address

Phone

Email

Payment

Visa MasterCard Amex Diners

Cardholder Name

Card Number

Expiry /

Signature

Cheque Money Order (Make payable to Independence Australia)

Please send completed form to Jen Sykes Jenny.Sykes@independenceaustralia.com Independence Australia, 208 Wellington Street, Collingwood vIC 3066

IA WinterInform 2013 (AUG).indd 25 30/07/2013 8:55:59 AM

Polio Reference Group Donation

Please accept my gift of $

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Polio Perspectives

Post Polio Universal - find us on Facebook!If Facebook was a country it would be the world’s third largest. As of June 2013, 1.26 billion people had signed on.Now, not everyone thinks Facebook is worth looking at. There have been problems, but for polio survivors there are benefits to be found and enjoyed. Dragged onto Facebook by fellow art students in 2009 in order to keep up following graduation, I quickly got into posting news and photographs of our work, then finding family and other friends. Instead of picking up a book and reading a few pages I would hop onto Facebook for the latest goss.A whole new world opened up. I could see isolated people my age chatting with grandchildren, sons and daughters overseas, finding long lost friends. One told me she and her husband often posted from the distance of their armchairs. Silly yes, but welcome to our world.In June 2011, I also saw the benefits of a Facebook page for the Community Bank I work for and launched that. Took me another year to see the benefits of linking polio survivors around the world. I now run four pages.Since attending the Polio conference at Warm Springs, painfully aware of the plight of polios in Africa, Asia and India, I wondered how could we support them from Australia? One answer: with information on self management, via Facebook.So with encouragement from Ari in Brazil, Ana in Spain and Lyn Glover on the Gold Coast, we launched Post Polio Universal. Since then ‘managers’ have joined us from Mexico and Germany in order to provide the widest and best informed views possible.Our mission statement reads: “Polio survivors around the world sharing information, support. Advocating, supporting organizations providing vaccination, while advocating their support of those they find with polio at district or national levels”.Post Polio Universal is primarily a good news site. It is not for gossip. We do Facebook with integrity. We only post information and pictures from reliable sources.Importantly, polios can post in their home languages. Translation is as easy as clicking onto ‘Bing Translator’.We currently have 275 friends from: Canada, USA, Mexico, Brazil, Chile, Argentina, Germany, Denmark, Holland, Switzerland, Italy, France, Portugal, Spain, Greece, Ivory Coast, Kenya, Nigeria, Madagascar, South Africa, Pakistan, India, Malaysia, Japan, Australia and New Zealand.I went to bed one night and there were 264 ‘likes’, next morning there were nine newbies, mostly from Italy but also Las Vegas and Zurich! It is my job to update the

map that is our ‘cover page’ and plant flags denoting new chums.PPU is not the only polio page, many European counties have their own. In the US Micki Minner runs Post Polio as a closed community. Her mission statement reads:“We are a group of polio survivors and caretakers of polio survivor loved ones. We ask that everyone in this group respect each other's differing beliefs and not use this site for selling, evangelizing, or any commercial ventures. We also ask that our members do not share or copy postings from this group into their unsecured personal walls. We wanted this site to be one of sharing, caring and venting. A place where every one could feel comfortable and safe! We like to share anything that has to do with living with polio, post polio and caring for our chronic conditions!”And ‘vent’ some do, men and women with polio living in constant pain, some in abusive marriages where the partner doesn’t understand polio fatigue. Letting out helps, they write.Of course Independence Australia has a Facebook page, stating it is a “not-for-profit organisation that supports people with a disability or other physical need to regain, retain and extend their independence”.More and more of us are joining the e-world, though this cannot be taken for granted as just as many still rely on print media.Have a look if you can, explore, join us. Key addresses mentioned are:www.facebook.com/IndependenceAustwww.facebook.com/Poliouniversalwww.facebook.com/fran.henke.5

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Polio Perspectives

Holidaying in the land of the long white cloud

David and I, with help of a friend, went to New Zealand for 25 days. The following is a brief report of our experiences and accessibility. We flew into Christchurch and travelled on the Coastal Pacific Train, which goes over Arthur’s Pass down into Greymouth. A few years ago Kiwi Railways built a new train so it is wheelchair ‘‘friendly’’. I was put in the carriage next to the Buffet Car. It was so lovely just sitting and watching the beautiful scenery going by that we decided to go on the train for the whole day. We stopped in Greymouth for an hour. It’s a very old town, and while efforts had been made to make it accessible it was difficult in places. The train back to Christchurch took 10 hours, but it was worth it. The following day we picked up the car and travelled to Twizel near Lake Tekapo. We went to the beautiful Lake Tekapo, where the shopping area was quite flat but the surrounding areas very undulating. Just sitting beside the Lake was very enjoyable. The town of Twizel was very accessible, but we were disappointed with the Motel. Then onto Dunedin. The person who runs the Motel has someone in the family with a disability so knows what we need. Dunedin is very hilly. We went to the First Church, and you can drive through the gates right up to the Church. The peaceful Chinese Gardens was mostly accessible. We had been advised to go to the Albatross Sanctuary but when we finally arrived up on a very steep hill, I could see that I would not be going down to see

the Albatrosses!! We could see in the distance it looked very accessible. The following day in Queenstown we had a room in the front of the Motel with a view of the lake and mountains in the distance. We went on the Skyline Gondola almost to the top of Bob’s Peak. If you are in a wheelchair, you are transferred to their wheelchair. They stop the Gondola, put your wheelchair in, then you are put in the next one, a tight squeeze! When you reach the top, again it is stopped, they get you out and your own wheelchair is there ready for you to go and enjoy the lovely scenery etc. We then went down beside the Lake, all very accessible, all very flat to wander around and enjoy something to eat. The following day we went on an old Steamer called SS Earnslaw for a 90 minute cruise around the Lake. The next stop was Franz Glacier, magnificent views going up into the mountains. Stayed one night in Franz Glacier at a very good motel. The following morning we drove to a place where we could see the Glacier from the distance. Then onto Westport for one night.Then we were off to Nelson, with the road followed the coastline. Most of the time we could see the ocean making it a very spectacular drive. Up very early to catch the Interislander between the South and North Island, all very accessible, very calm crossing. My advice, stay the night before in Picton. Stayed one night in Wellington, we did not see very much, but what we did see very hilly.

Margaret Griffiths, Warrnambool Support Group

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Polio Perspectives

Holidaying in the land of the long white cloud

Then off to Napier, again bad weather stopped us from seeing the town properly, which was unfortunate because all the buildings in the CBD are of Art Deco design. The Promenade along the sea front looked very accessible and would have been a very enjoyable stroll along it. On our way to Rotorua we stopped at Lake Taupo - such a beautiful place. From what we could see you could walk for a very long way on a flat path around part of the lake. Rotorua very flat in most places making it accessible. We went to see Lady Knox (Geyser) but ‘‘she’’ did not perform very well because the underground water was very low due to the lack of rain in the last 3 months. It was a little difficult to get to the watching area, but they did not charge me anything. The museum was very accessible. We went on a guided tour, making it more interesting, and the lady arranged for us to go up in a very small lift onto the second level which gave a view of Rotorua and surrounding mountains.Then onto Whitianga on the Coromandel Peninsula to stay in a lovely B&B for three nights. The house was on the side of a hill with a lovely view looking down on the bay and out to the mountains. We went up to Coromandel where we rode on a very small railway. Many years ago a man started making pottery there and over the years built a narrow gauge railway track to bring the clay down. Years later he was short of money and his Bank Manager suggested he build a few carriages and charge people to go on them up to the top of the mountain where you can look down on the valley and on a clear day you can see across to Auckland. On the final leg of our journey we went to the Bay of Islands – Paihia. The highlight of our time up there was the trip out to The Dolphin Hole on the Rock Cruise. We saw a pod of killer whales. The captain was very good - he knew where I was sitting and always had them on the right hand to make sure I could see them. We also went through The Hole, as the weather was calm enough, and

saw a few dolphins. We only drove though Auckland to stay one night near the Airport but it looked quite flat. Unfortunately the North Island was suffering drought conditions, so it was not so green as it normally is. A great holiday, met lots of friendly helpful people. Accommodation, like in Australia, can be disappointing. Some were very good and some not so good. A travel agent did all the booking and I would now advise anyone thinking of going to take plenty of time in advance of when you want to go. If possible make your bookings via the computer yourself, or check the ones that your travel agent selects for you. If possible take two trips, one in the South Island and then sometime later in the North Island, 2 weeks in each. The South Island is the more spectacular, but the North Island is also very beautiful. Just driving along in the car there is always lovely countryside to see.If you have never been or have thought about it, I hope you have found something of interest in my rambling about New Zealand that would encourage you to go. There is lots more to say, but that would take up to much space. New Zealand does not recognise our Disable Sticker so you have to apply to:

CCS Disability Action, PO Box 1506 Christchurch

It will cost you NZ $35.00, I asked for it to be posted back to me so it cost an extra $10.00. This takes approximately 2 weeks. I got the form off the computer.mobilityparking.org.nz/travelling/visiting -new-zealand

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Polio Perspectives

Polio Australia is still calling for people to add their name to the Australian Polio Register. Numbers are ammunition in the quest for greater recognition and funding for services for polio survivors and this is one way of gathering this important data.You can find the form online at www.polioaustralia.org.au

Walter Birt – splint maker extraordinaire

Fifty years ago I was a 19 yr old polio survivor, who had completed 3 yrs of my Engineering Degree and had just been offered a cadetship with Australian Consolidated Industries, and the first item I intended to buy was a caliper that collapsed at the knee.After saving for awhile, the day arrived to start negotiations to purchase a collapsible caliper, and that’s when I met Mr Walter Burt. Recently he came and gave a lecture to the Gold Coast Polio Support Group.Like many disabled people, I will always be in debt to this kind, and competent splint maker. Mr Walter Burt now lives on the Gold Coast, and throughout his life he was responsible for mobilising many a disabled person. He was born at such an age that he was a young man when the polio epidemic of the 45’s hit Australia.

The impact of this polio epidemic was alarming, because in an instance there were 2000 cases of polio in a population of approximate one million people in the city of Melbourne. Propagate those figures to today and you will realise how alarming the stats would be, eg, 10,000 polio cases in a population of 5 mil people?Mr Walter Burt explained to the audience, that during the crises the availability of material was of great concern after the war, but they improvised as they had to succeed in providing the disabled person with some type of mobility.This gentle giant of a man is an inspiration to all concerned for his unrelenting effort in ensuring all disabled people were adequately mobilised to his satisfaction.

Our paths of life crossed now and again and I remember one episode when I was supplied a caliper by another technician. I could not wear the caliper because it was made to a drawing and not to the demands and shape of the individual. Fortunately for me at the time, Walter happened to pass by the dress cubical and I relayed my concerns. He immediately confiscated the caliper and arranged for a new caliper to be supplied to his design.Today I still wear the caliper Walter designed and built. Ten years ago our paths crossed again when Walter was disposing of old equipment at Lifeline on the Gold Coast, and we thus renewed our friendship.

Australian Polio Register

Continued from page 14

Young poliosAs chair my main disappointment was that despite discussions this year with Migrant Resource Centres, we were unable to draw in young migrants with polio. We understand there are around 100 in Melbourne. The more we are ‘out there’ the more likely they are to know PNV is available when they are ready. One consolation is that we got on with business at their age, eventually to seek support. Trust they will do the same and a PNV in whatever form in around 20-30 years will be there for them.

HydrotherapyThe subject of hydrotherapy at PSV was raised at the meeting. The busy pool at St Vincent’s is increasingly under pressure. As this is one of our most effective forms of exercise, we decided to compile details on hydrotherapy pools around the state through RuralAccess and MetroAccess workers.Mornington Peninsula Post Polio Support Group has recently lobbied its shire on loss of access to one of the better hydrotherapy pools, so a state-wide information gathering exercise could prove valuable. We’d appreciate feedback on this subject: who uses such pools, how often, what access facilities are there, water

Graeme Johnson, Gold Coast Post Polio Support Group

temperature, does competition from other swimmers affect the swim, how beneficial is it. Email: fhenke@bigpond.net.au or Jenny.Sykes@independenceaustralia.com Best wishes to all for a peaceful Christmas.

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Polio Perspectives

Poliomyelitis in Western Australia: a historyThis book tells the story of urban and rural families in Western Australia. Individual cases are presented to illustrate the hardship experienced by the survivors and the impact on their lives and that of their families.The greater community was involved in the attempt to prevent further infections; care for the patients; support for the families; and, the eventual introduction of major community health initiatives leading to the mass inoculation of a population and the removal of this scourge from Western Australia.Polio survivors tell their stories through recollections shared with the authors and presented with care to detail and accuracy. Far from being a tale of self pity, the book relates how individual struggle resulted in triumph over a debilitating condition – the effects of which are still being experienced by many on a daily basis.If you are interested in purchasing a copy of this bookPhone: 08 9383 9050Email: poliowa@upnaway.com.au

‘Iron Wills’ commended at history awardsIn the past 12 months PNV has published two books, one winning a commendation from the Royal Victorian Historical Society.‘Iron Wills, Victorian Polio Survivors’ Stories’ was published in time for Polio Day 2012, our 25th anniversary. We received a grant from the Holsworth Local Heritage Trust for publication then were delighted to be invited by the RVHS to enter the book for its Community History Awards, in the collaborative community history section.The awards were presented at Deakin Edge, the auditorium at Federation Square on the Monday before Polio Day. Fingers were crossed.Keynote speaker was Professor Geoffrey Blainey. More than 100 entries had been received.We were delighted to receive a commendation in the section, won by the editors of ‘Through Their Eyes: A Glimpse into the Lives of Women from Benalla & District’.Information Services officer Jen Sykes and Fran Henke attended the function and made the most of it by

networking, presenting Professor Blainey with a copy and finding three people who wanted to talk about family or friends with post polio.As sales were going well for Iron Wills, with copies going to America, it was decided to reprint and we have so plenty of copies now available.For Polio Day 2013, finding nutrition a problem among polios, Fran decided to research the needs and compile a cookbook, with contributions of recipes and strategies from polios, friends and families.Illustrations for it were made on Fran’s iPad. Both books were desktopped with the assistance of graphic designer Evan Stampe, who designed one of the other award winning histories from Mornington (thank you Evan!).‘The Polio Day Cookbook, fine food for the fatigued’ was launched at Geelong by Jen Sykes and is now available for $15 plus postage. As with ‘Iron Wills’, all proceeds go back into a fund for education and information projects.Both make ideal Christmas gifts and order forms follow.

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Polio Perspectives

Polio 1956 – A mother’s perspective

Seeing your daughter at school one day, stretched out like a rabbit the next. What can you say? Fear for her life. Anger, disbelief, then the doctor tells you, your child will never walk again. I walked home from Fairfield Hospital to Thornbury. Couldn’t tell Sam, my husband. Next day the doctor told him. I have never seen him so upset. Five years in the Air Force had done nothing to toughen him up. As for me, I cried, I cursed but did everything I was asked to do. I went to the Children’s Hospital every day. Left home, got to the city, caught a tram, then a train to the hospital. Got to Richmond, got off to be sick. Train sickness was my biggest problem. At the hospital, all those beautiful children in different stages of some recovery. Dame Jean McNamara was the best polio specialist in the world. No understanding of a mother’s feelings. Hard as nails and a hat that made everyone laugh. Bird poop all over it. Everyone, including Dr. McNamara said “Mr. Parker is a real gentleman, but don’t upset Mrs. Parker”

Sam had permission from Australian Paper Mills to take any comic books or papers he thought the children may like. I think we took a ton of comics and books and the kids used to love to see us coming in the door. As time went on Bev was allowed a few days at home. The ambulance driver rang the bell from two streets away. What lovely people they were! Bev’s little mate used to take her on the long pram to High Street to see the T.V. What a great kid she was. Getting Bev back to school was a nightmare, however, I persisted and she went back to Hutton Street School. The men carried her upstairs to her class every day. I went back at lunchtime, took her to the toilet then went back for her in the afternoon.More trouble when she needed to go to High or Tech School as it was for her. Fortunately the Head Mistress at the Preston Technical College for Girls was a real lady and finished up one of my best friends. Two sisters at the College helped Bev all the time she was there. The Matthews sisters were a great support and still keep in touch with me. Going to work in calipers was the next thing. The Head Mistress found the perfect job for her. Her boss was like a father to her. She did it to perfection.Time went on. Bev married, had three beautiful children; a girl and two boys. They gave us five beautiful great-grandchildren, four girls and one boy. Bev put herself through University with great results. She now works as a Social Worker, much loved and admired.As for me, at ninety-three years of age, a war widow of four years, I count my blessings. Love all my kids and hope they never have to experience the horror of Polio. Bev’s brother Bert, took her to the dances with him, carried her up the stairs at Melbourne theatres. Gave one usher a really good reason why he carried Bev on his shoulder – “No she wasn’t drunk, just stricken with Polio” I believe the usher cried.I hope this is what people wanted to know about a polio victim’s mother’s feelings. I wish everyone good luck, good health and happiness.

Polio Reference Group Member Bev Watson

Nell Parker, Bev Watson’s mum

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The Polio Day Cookbook was launched at Polio Day 2013. It contains advice on nutrition, easy recipes, as well as tips for non toxic cleaning. Contributions have come from celebrity chef Maggie Beer, La Luna’s Adrian Richardson and polios everywhere.

Polio Perspectives

The Polio Day Cookbook - fine food for the fatigued

I would like to order copies of Iron Wills at $20 per copy ($3.00 postage within Australia, $15 for postage outside Australia).

I would like to order copies of The Polio DayCookbook at $15 per copy ($1.80 postage within Australia, $6.45 for postage outside Australia).

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Iron Wills and The Polio Day Cookbook Order Form

Please send completed form to Jen Sykes Jenny.Sykes@independenceaustralia.com Independence Australia, 208 Wellington Street, Collingwood VIC 3066

Polio Network Victoria

Victorian Polio Survivors’ StoriesIron WillsA unique account of epidemic and aftermath

Iron Wills – Victorian Polio Survivors’ Stories

A unique account of epidemic and afterm

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Iron Wills is also available at a cost of $20. You can order a copy by filling out the form below.

The Polio Day Cookbook is available at a cost of $15. You can order a copy by filling out the form below.

Independence Australia offer a wide range of specialist community support services and accommodation options.

Our services include:

Supporting people with a disability or other physical need to regain, retain and extend their independence

• In-home Support• Accommodation and Housing• Respite• Counselling• Case Management

• Outreach Support• Recreation• Information• Post Polio Support

For enquiries please contact us on 1300 704 456 or service.enquiry @independenceaustralia.com

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