INFOLINK
CONNECTING YOU WITH DISABILITY INFORMATION
SUMMER SEASON'S GREETINGS This is the last Infolink for 2016. It’s seen some changes over the year as we strive to make it a more interesting and informative read. We expect to see other changes at Life Unlimited too, as we explore new and improved ways for people with disabilities to access the information they need to live the life they choose. It’s one of our goals for the new year stay tuned! This Infolink is all about goals. We catch up with Paralympian swimmer Mary Fisher to find out about her next challenge. We also chat with Kerrianne Arvidson and her mum about how she’s meeting goals as part of the Enabling Good Lives demonstration in the Waikato. Enjoy a safe and happy holiday season.
IN THIS ISSUE NEW CHALLENGE FOR MARY FISHER CONSUMER COUNCIL COMING KERRIANNE'S STORY WORKING WITH CBM
2016
PARALYMPIAN SWIMMER FACES NEW CHALLENGE
Mary Fisher has a key message for anyone with a disability and she draws on her experiences as a world champion Para-Swimmer to illustrate its importance. “Swimming has been the vehicle for me to feel confident, form new relationships and go places …. that act of being engaged with the world. "You can do stuff with the right support and the right mind-set,” the Wellington-based Paralympic double gold medallist says fresh from a night celebrating Rio de Janeiro success with her team mates and Prime Minister John Key. The 23-year-old Massey University student is in a swimming lull – uncertain about the 2017 schedule. So instead she is preparing for a different challenge, the 87km Tarawera Ultra Marathon in February next year. “I don’t think I have anything to worry about, I’m going to have a good time and enjoy the outdoors,” she says with a chuckle. But Mary is downplaying what would be an enormous challenge for any athlete let alone one with only light perception, classified as “totally blind”. She will have a guide with her - Catherine Bennett, Life Unimited general manager of Access but the terrain will be tricky with roots, rocks and steps from Rotorua to Kawerau on trails and forestry roads among planted and native forests through the Tarawera Forest. “I’m just looking forward to that challenge of being outdoors because for the last six years everything has been focussed on swimming.” When Mary was born in Lower Hutt, she had aniridia, a rare genetic condition resulting in low vision which deteriorated as a teenager. “I really appreciate the sight I did have but it is hard as a teenager to go through that. “As my sight got worse, I had to learn to use a cane and read Braille which made me different from my peers. Swimming was the equaliser for me," says Mary.
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WHAT'S ON
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Mary Fisher competing at the 2016 NZ Swim Open Championships. Photo: BW Media.
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MARY'S NEW CHALLENGE CONTINUED FROM PAGE 1 “It was a bit isolating though and my reaction to it was that it is hard to say ‘oh yeah I want to use a cane’ because it feels like that tool will give you less independence or people are going to look at you and form assumptions about you as a blind person. “In reality, using those kind of tools and Braille gives you more autonomy and independence because you can do more things by yourself and not walk into walls and feel stupid.” In 2007, she made her debut for the New Zealand Para-Swimming team at a Darwin multi-sport competition. Five years later, she won gold, two silvers and a bronze at the London Paralympics and set a new world record in the 200m individual medley. “London was everything I dreamed of and more. Everything clicked into place and bringing home four medals was just incredible.” Mary credits then coach Luke Clark, parents Jenny and Mike and brother Simon and friends and flat mates with her success. “Mum and Dad and Simon provided support in other ways that no sighted athlete would ever need,” Mary says. The following year she was made a Member of the New Zealand Order of Merit for her services to swimming. “The whole ceremonial aspect was quite strange and novel to me. It did feel uncomfortable. I was supposedly getting this award for services to swimming when I felt like swimming had done me a total service." She was named disabled sportsperson of the year at the 2014 Halberg Awards and the following year teamed up in Auckland with legendary Paralympic swim coach Jon Shaw to prepare for
CONSUMER COUNCIL FOR WAIKATO DHB JOHN MCINTOSH Recently I attended a workshop to help design a model of Consumer Council that works for Waikato communities. This workshop was held by the Waikato District Health Board (DHB) in partnership with the Health and Quality Safety Commission. Invitees were from a wide range of community organisations and interested individuals who are Waikato DHB health service users.
Rio de Janeiro. Gold in the 100m backstroke in a world record time justified all the hard work. Mary is back in Wellington finishing up the last few papers of her arts degree, specialising in psychology and human development. She has also been speaking at schools, community groups and on the corporate speaking circuit. When not training for the Tarawera ultra marathon, Mary is catching up with friends and family. The words ‘role model’ are often used too liberally when it comes to sportspeople. In Mary’s case, they are apt. “It is nice when people respond to us as Paralympians and I like to use that for goal-setting. “I feel a responsibility to try and give back to organisations that are similar to the ones that helped me when I was growing up.”
Members of the New Zealand Rio 2016 Paralympic Team and Sochi 2014 Paralympic Winter Team with Prime Minister John Key. Photo: M2.
Many DHBs have already embarked on this journey to develop Consumer Councils, however they vary in the detail of their implementation. For example, in Hawke’s Bay their Council replaced many of the specialised advisory groups, while in Northland advisory groups are still in place and active. A Consumer Council would provide an effective formal structure for consumer input into important issues for the DHB on an ongoing basis. Importantly, it is believed it could drive consumer involvement in service improvement. A Consumer Council would work collaboratively with Waikato DHB, governance and management teams to: • provide an effective voice for communities and consumers on health service planning and delivery • provide an over-arching strategic and governance role regarding consumer engagement • promote, oversee and provide input into key strategic plans • facilitate links and communication with services. A Consumer Council would support the Waikato DHB Strategy to: • provide people-centred care • utilise the expertise of communities, providers, agencies and specialists in the design of health and care services • provide care and services that are respectful and responsive to individual and whānau needs and values • provide health equity for high-needs populations.
Life Unlimited community liaison John McIntosh attended a Consumer Council workshop held by Waikato DHB in November.
This is just the beginning of the journey. The next step is a series of hui to get input from the wider community.
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ENABLING GOOD LIVES: KERRIANNE'S STORY
working with a Tūhono/Connector she and her family can identify the supports they need to make it happen. Kerrianne’s next goal is to have someone come and teach her how to bake. She also wants to learn New Zealand sign language. “She used to sign as a child because of her hearing,” says Tracy. “Then she had surgery for her ears and she started talking to me, and I would make her talk and pronounce her words. So sign language stopped - which was the whole goal really.” But Kerrianne has always had a keen interest in learning sign language again so she can communicate with others who depend on it. “Kerrianne loves to communicate with [friends] that don’t communicate so well. She seems to know what they want. “She’s got quite a passionate heart for people that cannot communicate like her.”
"I do it to be fit," says Kerrianne Arvidson who attends Life Fit every week.
Tracy Edwards reckons daughter Kerrianne is a real people person. “She’s always been involved in everything,” says Tracy. During her time at Wings – a vocational service in Morrinsville run by IDEA Services - Kerrianne was supported to find work delivering the Piako Post and at the RSA. She also took on an advocacy role with IHC to support other people with disabilities. But when the family moved further away from Morrinsville it meant Kerrianne had to give it all up.
Kerrianne receives trainer of the day from Life Fit instructors Toni Hall and Mona Patel.
“It was a mission to keep her there. Once we moved from Morrinsville to Tauwhare the support became nought. So Kerrianne decided she’d be at home all the time. But I didn’t think that was fair because she likes to do her own stuff,” says Tracy.
WHAT IS ENABLING GOOD LIVES?
It can be a challenge accessing services for rural families, particularly when there’s a busy farm and a large family to look after. “I think that there’s a big gap for any parent with a child with a disability in any area that’s not close to a facility,” says Tracy. Enabling Good Lives has thrown a lifeline to Kerrianne and her family. It gives them the flexibility to use funding for the supports they need. In Kerrianne’s case, travelling to and from the activities she loves is a high priority. Kerrianne relies on Driving Miss Daisy for transport. It takes a big chunk of the funding, but means she can attend Life Fit - a weekly exercise class run by Life Unlimited. It also means Kerrianne can go to waiata group at Kirikiriroa Marae - waiata is a lifelong passion of Kerrianne’s. “I have memories of Kerrianne at five swinging the poi at Māori group,” says Tracy. “She had a tendency to be left handed back then and she was the only white child in the group, swinging the poi in the opposite way to everybody else. Because she was a little blondie as well she stuck out like a sore toe.” The Enabling Good Lives approach means Kerrianne has the opportunity to set her own goals and plan for a good life. By
Enabling Good Lives is a new approach to supporting people with disabilities so they - and their family - can have more choice and greater control over their lives.
HOW DOES IT WORK? If you choose to join Enabling Good Lives you’ll be matched with a Tūhono/Connector. They’ll help you identify what is a good life for you and help you make a plan to reach your goals. You and your family will have control over your funding so you can have real choice about the services and supports you employ to put your plan into action.
WHO CAN JOIN? Enabling Good Lives is currently running as a demonstration in two areas. In the Waikato the focus is on supporting: • disabled people who would like increased choices • Māori • disabled children aged 0-18 and their families • disabled people who, with a small amount of assistance, could be employed. In Christchurch, Enabling Good Lives can be accessed by new school leavers with high or very high needs in the Ongoing Resource Scheme (ORS). Visit www.enablinggoodlives.co.nz
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WHY I'M INVOLVED WITH CBM BY TONY MCLEAN
For more than 23 years I’ve been incredibly blessed to have worked in a wide variety of paid and voluntary capacities with people who society has largely excluded, or simply pushed to the margins. Many of these contexts have brought me face-toface with the impact that disability has on individuals, families, communities and society as a whole. I am currently the Community Development Manager at Imagine Better, an organisation that partners with people living with disabilities and their families as they imagine, plan and go after good things in life.
WHAT'S ON
15 December - Open Forum with Minister for Disability Issues, Wellington 9.30-11am at Ministry for Social Development, Aurora Centre, 56 The Terrace. RSVP events@msd.govt.nz 15 - 23 December - Waikato Deaf Art Exhibition At Creative Waikato, 131 Alexandra Street, Hamilton. This year’s theme is Whaka oho oho wairua: Awaken the spirit. Contact kayte.shaw@deaf.org.nz
My first encounter with the cbm New Zealand team was in 2011 at a conference in Wellington. I knew instantly that this was a group of people committed to and passionate about making the world a better place for people living with a disability and their families. I signed up as a volunteer the very next week. In early 2015 I was approached about joining the cbm New Zealand Board. It was a real honour to be considered for such a role and one that was accepted with a deep desire to add to the wonderful work of all those that have gone before. cbm New Zealand is such an incredible organisation to be a part of, so small on the global stage but one that contributes significantly to the lives of thousands of individuals in some of the world’s poorest countries. In May 2016 I was incredibly fortunate to travel to one of cbm New Zealand's programmes in Kulon Progo, Indonesia with Linabel Hadlee, cbm New Zealand’s International Programmes Manager and the programme team. To see the impact on real people’s lives was an incredibly humbling experience for me. This single programme which focuses on micro finance and business development has fundamentally changed the lives of hundreds of people. I was able to meet many of them, talk with them and receive their thanks and gratitude. cbm International is an aid organisation that works with disabled people in the poorest countries of the world. It shares a common vision with Life Unlimited for an inclusive world in which all persons with disabilities enjoy their human rights and achieve their full potential. Learn more at www.cbmnz.org.nz.
Waikato Deaf Art Exhibition is on in December. Art by Miiria Storey.
2 - 6 February - Inspiration Voyage Auckland A five day voyage that provides an opportunity for physically challenged New Zealanders aged 16-20 to take part in an adventure of a life time. Registrations close soon. Visit www. spiritofadventure.org.nz 11 February - Renew workshop Tauranga A free workshop for families raising a child with disability that will leave you energised, with new connections, ideas, hopes and aspirations.Contact centrallakes@parent2parent.org.nz 15 February - Show Your Ability Expo Hamilton Visit the Life Unlimited Store team at New Zealand’s premier annual disability equipment show at Claudelands Event Centre, 9am-3pm. Free entry. The show also visits Auckland, Palmerston North, Christchurch and Dunedin. Visit www.3am.net.nz 19 February - Cigna Round the Bays, Wellington Achilles is an organisation providing support to enable people with all types of disabilities to participate in mainstream athletics, including the 2017 Round the Bays. Achilles training sessions run fortnightly in Auckland, Wellington, Christchurch, Hamilton and Rotorua. Visit www.achillesnewzealand.org 26 February - 4 March - New Zealand Hearing Week This year’s focus is the economic impact of hearing loss. Visit www.nfd.org.nz for more information. 18 March - Renew workshop Rotorua A free workshop for families raising a child with disability that will leave you energised, with new connections, ideas, hopes and aspirations. Contact centrallakes@parent2parent.org.nz
Tony McLean talking to Suryati, whose small business loan from cbm has enabled him to buy chickens and sell them at the market at a profit.
19 - 20 July - Altogether Autism Conference, Auckland Early bird tickets now available. Visit www.altogetherautism. org.nz/conference