Life Unlimited Infolink, Winter 2018

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CONNECTING YOU WITH DISABILITY INFORMATION

WIN $100

PREZZY CARD see pg2 for details

IN THIS ISSUE INNOVATION AWARD WIN FOR LIFE UNLIMITED LIVECHAT GOES LIVE THE MANY SIDES OF FE PENDANT OFFERS PEACE OF MIND EXPLORING PARKING ON FOOTPATHS A DANGER TO USERS

PUBLISHED BY Life Unlimited A charitable trust offering health and disability information, advice and equipment to enable you to live the life you choose. EverythingSENSORY we do helps to create HAMILTON GARDEN opportunities for people to OPENS make and be in control of their own life choices.

Life Unlimited began in 1979 as Disabled Living Centre (Waikato) Trust. In 1997 it became Life Unlimited.

CONTACT DETAILS

communications@lifeunlimited.net.nz Freephone 0800 008 011 Facebook lifeunlimitednz YouTube life unlimited Instagram lifeunlimitednz www.lifeunlimited.net.nz

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GROWING GOOD LEADERSHIP A new Disabled Leadership Group brought together by Life Unlimited will bring a valuable mix of expertise, lived experience and fresh thinking to help inform the future direction of the organisation and the services it delivers. Members of the eight-person group have experience covering a range of disabilities, geographic locations and cultural backgrounds. Members include people either living with a disability themselves or supporting immediate whānau with disabilities. The group will have a hands-on role with wide-ranging responsibilities which include reviewing the delivery of disability information to ensure ongoing quality. It will also provide continued input into the development of the Online Information Hub including contributing new content and story ideas. Another challenge for the Disabled Leadership Group will be the exploration of new ideas for service improvement, plus they will be responsible for testing and providing ongoing feedback on the management of newly-implemented initiatives.

Chief executive Mark Brown

The group will also focus on advocacy, raising any issues or concerns for the disability community on the implementation and management of services and improvement initiatives across the sector. Life Unlimited chief executive Mark Brown said the new Disabled Leadership Group is a welcome addition to the organisation and demonstrates Life Unlimited's commitment to listening to disabled people's voices. “By establishing a Disabled Person’s Leadership Group we intend to underpin the support we deliver and the service improvements we make with input and guidance from people who live with a disability or support a person living with a disability.” Life Unlimited welcomes Anne Wilkinson, Darya Small and John McIntosh from Hamilton; Freedom Nathan from Te Kuiti; Dan Carswell, Genevieve McLachlan and Elizabeth Taefu from the Wellington region; and Sandra Wood from Gisborne to the Disabled Leadership Group. My name is Dan Carswell. I have lived both in the community and in residential care over the past twenty-five years. I want to be involved in the leadership group as I believe I can add a lot of experience in terms of dealing with caregivers in your own home. I also believe that more organisations need to have people in leadership roles that use the service that is being provided as it is only those persons that have first hand experience on what is being offered.


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LIFE UNLIMITED WINS INNOVATION AWARD A series of short videos featuring disabled people talking openly and honestly about their lives has been recognised with an innovation award from the New Zealand Federation of Disability Information Centres. Life Unlimited Charitable Trust picked up the Diane Rangi Innovation Award for a video project led by one of its general managers Catherine Bennett who approached Attitude Live to make the videos using their popular Question Time concept. The result is 21 innovative and engaging videos made by disabled people for disabled people, their family and supporters. The Question Time series includes interviews with advocate Dr Huhana Hickey, ‘Dancing with the Stars’ contestant Jess Quinn and former Paralympian Daniel Holt. At the award ceremony held in Palmerston North, organisers said the project stood out because of its beginnings in workshops with disabled people and family members who discussed what they wanted from disability information. A recurring theme in those discussions was the opportunity to tell their own stories. Life Unlimited information advisor April Johnson, who attended the ceremony in May and accepted the award on behalf of

April Johnson and Catherine Bennett pictured with the Diane Rangi Innovation Award

Life Unlimited, said working on the Question Time project has been a career highlight. “Working with people and giving them a platform to share their personal stories is a very humbling experience. So many people and their families have generously agreed to share their stories in the hope it helps others. “The Diane Rangi award has special significance for the federation, so I felt honoured to accept the award on behalf of Life Unlimited." The Diane Rangi Innovation Award was named for a long-serving information consultant at Enable NZ. Before she passed away, Diane helped design the trophy that will be on display at Life Unlimited over the next year.

LIVECHAT GOES ON WEBSITE

Visitors to Life Unlimited’s disability information website can now get real-time answers to their real-time questions with Life #LiveChat. Want to know how to get a mobility parking permit? Or where you can find national support organisations? Maybe you have questions about some of the new approaches to disability funding?

WIN $100 PREZZY CARD

In the Autumn issue of Infolink, we told you this would be the last edition of Infolink sent by post. But, that doesn't mean it's the end of quality information, disability news and inspiring stories from Life Unlimited. You can find all our news and articles on our website. We promote new and interesting stories through social media, so make sure to follow us on Facebook and Instagram. And if you subscribe to our electronic newsletter at www.lifeunlimited. net.nz/hub you'll get all the latest news delivered directly to your email inbox. We hope you'll sign up to receive all our great stories electronically by email. And to help make the decision easier, we're giving away a $100 Prezzy Card to one lucky electronic newsletter subscriber - that's $100 to spend almost anywhere that accepts VISA electronically. The winner of the $100 Prezzy Card will be drawn on 31 July so visit us online and subscribe today.

A friendly, knowledgeable Life Unlimited team member will be available at key times in the day to answer questions online.

CREATING SENSORY SPACES Are you or your organisation looking to create or improve sensory spaces in your school, rest home, day-service or at home? This four-hour workshop on 26 October at Life Unlimited in Hamilton will help you understand the benefits of using a sensory room or space and what equipment and activities will best suit your clientele and budget. For more information about course content and cost contact wendyb@lifeunlimited.net.nz


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THE MANY SIDES OF FE

Often the first thing people see when they meet 23-year-old Fe Jacobs is her disability. This Question Time video star just wishes it wasn’t all they see. The second-year occupational therapy student was born with spina bifida. She’s enrolled at Otago Polytechnic but attends classes at Wintec in Hamilton. It’s close enough to walk, says Fe. Of course, when Fe says “walk”, she really means she makes the trip there and back in her wheelchair. “I walk to tech – I mean I use a wheelchair, but I call it walking. It’s my version of walking when I use a wheelchair. It’s my legs while I’m in it.” Not many nine-year olds dream of a career in neurodevelopmental physiotherapy. When Fe was told her physical disability would make working as a physiotherapist difficult, she decided to follow a career in occupational therapy instead. She’s half way through a bachelor’s degree and is already planning to continue study so she can specialise in orthotics. “I wear ankle-foot orthotics myself, that’s why I’m interested in it.” They’re not your usual orthotics though – they fit underneath a pair of boots that make Fe look as if she just got off the back of a motorbike.

Fe was approached to take part in the Question Time video series after volunteering in an administration role at Life Unlimited. The series of videos, made in partnership between Life Unlimited and Attitude Live, were created so disabled people could tell their stories. “I like the idea of people knowing things, being more knowledgeable about why people are the way they are,” says Fe. She discussed the idea with her mum and decided it was also a good opportunity to talk about some of the issues wheelchair users face every day that Fe finds frustrating, like the assumptions people make. “You can’t just see someone in a wheelchair and assume they have intellectual difficulties. I just don’t understand it really.” Fe’s also fiercely protective of her independence – and her personal space. “One day it was raining and I was going up a slight hill and someone just decided I needed help. They started grabbing at my wheelchair, which scared me. It made me feel uneasy.” As Fe explains, the wheelchair is her legs – an extension of her body – so having someone touch it without her permission feels like assault. Answering frank questions about life and disability in front of the camera for Question Time didn’t faze Fe.

Keri Opai

FE JACOBS: More than meets the eye.

“I kind of forgot it was there. I was just having a conversation with the person that was texting me. Yes, there was a camera, but I was just having a conversation.” Some people may be surprised to learn that although the final Question Time video is just four minutes long, the original interview took over two hours. Fe is glad the final cut includes her talking about how much her mum has done for her. Fe calls her mum her biggest “advocate, motivator, support”. “She was very motivated for me to be the best I could be. “Everything she did in the first 18 months of my life set me on the path for the rest of my life. There are no words to describe the impact she’s had on my life.” That includes beginning physiotherapy at just one week old so Fe might learn to walk – even though there was no guarantee it would work. It took four and a half years for Fe to take her first steps. She says walking takes a lot of energy and she can’t walk everywhere, so for much of her day she uses a wheelchair. “But the fact that I can walk at all is all due to my mum.” Like many tertiary students, Fe’s still living at home and she appreciates the support of family. But the way Fe says she’s “not independent at the moment” or “I don’t drive yet” gives every indication those milestones are very much on the agenda. On her Question Time video, Fe says having spina bifida is “one part of Fe”. “Sometimes people see the wheelchair and my spina bifida - and that’s all they see.” She wants people to see the other parts of Fe – the daughter, the student, the artist, the future occupational therapist.

Artwork supplied by Fe Jacobs.


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PENDANT OFFERS PEACE OF MIND EXPLORING

Getting out into the natural world provides valuable opportunities to learn and explore. But, it’s often difficult for parents and caregivers to find safe places to visit if the child or person they care for likes to wander. Helen Anderson and Hamish Campbell used to love to take their autistic son to Zealandia, the world’s first fully-fenced urban ecosanctuary in Wellington but were always afraid they would lose him in the 225 hectare grounds. So they donated a Wandatrak pendant to the sanctuary which lead ranger Adam Groenewegen wants the community to know about. “When the Zealandia founders Jim and Eve Lynch came up with the idea to establish the sanctuary, their vision was to establish something that could be appreciated by all,” said Adam. “When Helen and Hamish donated the pendant, we were thrilled to be able to provide it for other families experiencing similar issues.” Wandatrak pendants do not stop people from wandering Ranger Campbell May with the but they do help find them. It Wandatrak pendant at Zealandia is worn around the neck in the form of a necklace and contains a tracking device which emits a signal that is easily traced using a receiver unit. “We have always maintained the pendant and offer it free to anyone requiring it for a visit to Zealandia. It’s registered with Search and Rescue NZ,” he said. “People who want to visit Zealandia and use the pendant can let us know in advance and we will arrange to have the pendant available.” Zealandia has a vision to restore its valley to the way it was before the arrival of humans. With its 8.6km fence keeping out introduced mammallian predators, birds such as the tūī, kākā and kererū are all now common sights around central Wellington.

EMERGING DIRECTOR AWARD Applications for the Emerging Director Award - Disability Sector remain open until 23 July 2018. The award is specifically for an aspiring director with a disability, or with a close family member who has a disability. The award is designed to foster upcoming talent in governance, and winners receive the opportunity to be mentored by an experienced director for one year, funding for governance development, and a one-year Institute of Directors membership. For further details visit our website to read the full article at www.lifeunlimited.net.nz/director-award.

INCONSIDERATE PARKING MAKES FOOTPATHS UNUSABLE

Cars obstructing footpaths are not only illegally parked, they put other people at risk, says Life Unlimited community liaison John McIntosh. “Motor vehicles that are parked over footpaths are a potential hazard for everyone, especially for people with disabilities, people with mobility issues, older people, children and parents with prams. “In many cases pedestrians may be forced to walk on the road into oncoming traffic – something that young children don’t have the skills to judge very well – or they may have to walk over gardens or uneven terrain which poses a hazard for those of us who are unsteady on our feet. “And many mobility items like wheelchairs or scooters just aren’t designed for off-road conditions.” Both the Land Transport (Road User) Rules and the NZ Road Code say it is not legal to park a vehicle on any footpath or in front of any vehicle entrance - even if it is your own driveway. You are allowed to park a cycle, mobility device, or ‘wheeled recreational device’ on the footpath as long as it is not in the way of other users of the footpath and there is no sign that says otherwise. If a vehicle is parked illegally they risk being served an infringement notice by the local council. The council could also have the vehicle towed, especially if it is parked in a way which is causing a major problem or safety hazard. Although inconsiderate drivers are one part of the problem, John says there are other factors at play such as poor urban design. “Educating vehicle users to be more aware about how they impact on other road and footpath users is vital. But we also need to be smarter about the way we design these spaces. “Things like wider footpaths and wheelstops to prevent bumpers encroaching over paths would go some way to make the environment functional for both road and footpath users.”


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