Parent to Parent magazine July 2018

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NEW ZEALAND’S FAMILY DISABILITY MAGAZINE

Please Do Touch Opening doors to the outdoors Circle of support of e n o win ooks 2b

OK EBO C A F S UR AIL IT O DET S I R V O EF PAG

July 2018


Kia ora readers...

W

elcome to our winter magazine – half the year has vanished already, the shortest day behind us, and Term 2 school holidays loom!

In this issue we feature Raglan artist Yaniv Janson and his latest exhibition at the UN in New York. We have a special link to Yaniv as one of his earlier paintings was donated to our national office and has pride of place. Our Kiwi Celebs Create for a Cause art auction on Trade Me at the end of May was a huge success, with awareness of what we do reaching an estimated 1.7 million Kiwis through free media publicity. Thank you! As well as regular columns by Disability Minister Carmel Sepuloni and Disability Rights Commissioner Paula Tesoriero, we introduce our new Board president Lorna Sullivan with her first column.

will eventually roll out across the country. If you want change, it gives families and people with disabilities more choice, control and a voice in what a good life looks like for them – and the support to get there. We acknowledge the passing of John Baldwin (JB) Munro, QSO, in Christchurch on June 4. JB played a pivotal role in the most significant advance in disability rights in the history of New Zealand. During his 20-year reign as IHC national director, in 1983 he persuaded IHC to gift $5000 seed funding for Parent to Parent to establish in Auckland, and was awarded our Lifetime Membership in 2016. Finally, a huge thank you to businesses which generously gave us charity discounts over the past financial year, and our magazine advertisers for their support. Stay warm and well!

You’ll catch a system transformation theme on a few pages. Are you familiar with Enabling Good Lives (EGL) and how it could change and grow opportunities for your disabled family member? It starts in the DHB’s MidCentral area in October and

Help us empower Kiwi families to lead good lives Editor: Sue Pairaudeau Editorial: Staff writers, guest contributors, and freelancers Monica Holt and Clare Chapman Advertising: Carey McLaughlin Graphic design: Te Reo Hughes, Steven Mahoney Cover: Please Do Touch artwork by Yaniv Janson. Photo Nadav Freeman Printing: Annex Group ISSN 2463-3631 (Print) ISSN 2463-3585 (Online) Copyright: Seek permission from the editor for the whole or part reproduction of any contents in this publication. Disclaimer: The views and opinions expressed in this publication are those of contributing writers and not necessarily those of Parent to Parent NZ. Parent to Parent NZ cannot endorse services or products in paid advertisements.

Sue Pairaudeau, Editor

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Hono, kōrerotia, tautoko • Connect, inform, support family and whānau of Kiwis living with disabilities.


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CONTENTS 2

Young Kiwi artist in New York:

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Opinion:

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Voice for change:

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19

Technology

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Research:

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News

News

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Opinion:

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Opinion:

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News

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Opening doors to the outdoors

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Books

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Tribute:

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Opinion:

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Opinion

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Research:

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Circle of support:

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New faces

Please Do Touch, by Yaniv Janson

Minister for Disability Rights Carmel Sepuloni

Kylee Black

Disability Rights Commissioner Paula Tesoriero

JB Munro

Lorna Sullivan

Support Parents

Dr Anthea Skinner

Sue Pairaudeau

Dr Michael Kendrick

Dyspraxia

Parent to Parent July 2018

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People

Young Kiwi artist in New York R

aglan contemporary artist Yaniv Janson last month exhibited in New York at the United Nations (UN) Headquarters – coinciding with its annual meeting for the Convention on the Rights of Persons with Disabilities.

country that implements novel and practical ideas and this exhibition was showcasing this to the world.” Minister for Disability Issues Carmel Sepuloni attended and hosted the official opening of Yaniv’s exhibition on June 11.

The exhibition reflects the UN’s 17 Sustainable “It was great exhibiting my paintings at the UN. I felt Development Goals. Yaniv says he was inspired by these special and unique,” Yaniv says. goals and turned five of them into themes to help make his “The building is a beautiful paintings: Life Below Water, space to exhibit. I enjoyed No Poverty, Clean Water and meeting again with Minister “I come up with my own ideas and I Sanitation, Climate Action, Sepuloni and now I have feel like I’m different from other artists. and Sustainable Cities and a picture with her – she is I’m shy and don’t always find it easy to Communities. an incredible supporter of talk with other people, but it’s important my art. I didn’t know she is for me to show that disability is not a His 10-piece Please Do also Minister for the Arts barrier to achieving. Disabled people Touch exhibition aimed to and Culture. It is a double can make a valuable contribution to break traditional boundaries privilege that she is so society. I think I do.” between disability and art, encouraging and positive.” and encourage people to - Yaniv Janson touch the artworks. Yaniv really enjoyed his stay in New York, “which was a “There are two paintings for week exactly, and I made each theme,” Yaniv says. “I want to move people to care a connection with a local gallery who said they may be about improving the environment. Everyone should be interested in showing my art next year! Time will tell”. able to live decently in a clean world. Yaniv, in his early 20s, has Asperger syndrome and “The New Zealand Ambassador (Craig) told me he is epilepsy. He started painting 11 years ago and has since thrilled that New Zealand contributed an art exhibition to won more than 18 awards, participated in more than 40 the Conference of State Parties, Committee for the Rights exhibitions and sold over 160 paintings to collections in of Persons with Disabilities this year. He really appreciated New Zealand and internationally. the theme of my exhibition about the Sustainable Development Goals because as he said New Zealand is a

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People Last year he received a grant from Creative New Zealand to fund a trip to Europe with Please Do Touch – he exhibited work in Montenegro after a personal invitation to a conference by the Crown Prince, and at the UNESCO* headquarters in Paris. Yaniv already co-leads a UNESCO project designing educational resources to train staff supporting people with disabilities, and collaborates with Apple to distribute some of these resources. He worked with Comvita on a bee protection campaign, hosting a VIP event to introduce his Beehives Hidden in Trees collection. The youngest artist invited into the New Zealand Academy of Fine Arts, Yaniv’s mission is to raise awareness of environmental and social issues, and inspire audiences to create change through art. Yaniv loves the work of artists like Hundertwasser, Matisse and Monet. “For them, like me, colour, light and water were important.” Yaniv thanks the Ministry of Foreign Affairs and Trade for its

“It’s a privilege to be able to open Yaniv’s exhibition. He is a young, talented New Zealand artist displaying his work on the world stage, at the UN in New York, and New Zealand can be proud.” - Minister for Disability Issues Carmel Sepuloni

support in getting the exhibition to the UN, and the lovely team at the NZ Mission to the UN for their practical help with logistics. * United Nations Educational, Scientific and Cultural Organisation (UNESCO) aims to build peace and reaffirm the humanist missions of education, science and culture. New Zealand became a UNESCO member in 1946. https://www.hrc.co.nz/yaniv-janson/inspiration/ http://www.yanivjanson.com/

PLEASE DO TOUCH: Raglan artist Yaniv Janson’s exhibition at the UN in New York encouraged people to touch the artwork. Photos: NADAV FREEMAN

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Opinion

Minister for Disability Issues Carmel Sepuloni announced a new support plan that will be trialled in Manawatū.

Photo: AUCKLAND COUNCIL

Supporting families to have better lives By Hon CARMEL SEPULONI Minister for Social Development, Minister for Disability Issues, Associate Minister for Pacific Peoples, Associate Minister for Arts, Culture and Heritage

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t’s been a whirlwind of late, travelling to meet communities around the country, topped off by being fortunate enough to represent the Government at the United Nations in New York, at the annual Conference of State Parties to the Convention on the Rights of Persons with Disabilities (CRPD). The UN visit was a great experience, and I was able to meet many interesting and talented people from around the world. It was also an opportunity to showcase what New Zealand is doing, particularly the changes to supporting greater selfdetermination by disabled people and families. It’s events like these that provide a great opportunity for a

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stocktake, and in truth I am hugely pleased with what we’ve been able to achieve, yet at the same time know that there is much, much more to be done. I asked myself the question – what tangible change have we made to the lives of people living with disability? First and foremost, this Government has several initiatives under way that will help reduce the pressure on families, so that parents, carers and children are more able to have better lives. I know that families with disabled children, or who are caring for disabled adults, face extra pressures that other families don’t have. I expect that these initiatives will go some way to helping out. I think we all acknowledge that for households with one or more disabled family members, there are daily hurdles in the form of rising living costs, unseen expenses or expensive renovations, and even limited employment options where in-home care is a priority.


Opinion You may not have had a good look at the Families Package, which we announced in December 2017 not long after becoming the Government. The Families Package is designed to provide targeted social assistance to improve incomes for low and middle income families with children, and to reduce child poverty. While on the face of it, it may not appear to have a direct relation to the disabled community, I have heard directly from people getting assistance through the Families Package, particularly the new Winter Energy Payment, blown away by the support. In one instance, a lady with an adult autistic son said that knowing he was getting more financial support took a huge weight off her shoulders; in another a woman with a seriously disabled child thanked us for the Winter Energy Payment for her elderly parents – again, she was struggling to juggle her family responsibilities and the extra $700 her parents would receive made a great difference. For myself, this feedback gave me renewed confidence that we are doing the right thing, but also showed me that the impact of these changes was in fact wider than originally thought. The first part of the Families Package is already under way, and from 1 July 2018, the Families Package will make changes to the Family Tax Credit, meaning an estimated 26,000 more families will be eligible for Working for Families; introduce a Best Start payment of $60 per week per new born child to help families with costs in a child’s early years; and

increase paid parental leave, the rate of the Orphan’s Benefit, Unsupported Child’s Benefit and Foster Care Allowance. Another important initiative is the Government advancing reform of the disability support system. These changes will have a direct impact on families with disabled children or caring for disabled adults. From 1 October 2018, 1,600 eligible disabled people and their families and whānau in the MidCentral District Health Board region are set to experience a different way of providing disability support, which is more flexible and individually tailored. Anyone in the MidCentral region who meets the Ministry of Health’s Disability Support Services eligibility criteria will be eligible to access support under the transformed model. You can find out more about Enabling Good Lives and the disability support system transformation at: www.enablinggoodlives.co.nz/ Some families who are working with Enabling Good Lives Waikato have been generously sharing their stories. They talk about the world of difference it has made in having the extra flexibility in how disability support funding can be used. You can watch the stories so far by going to: bit.ly/2tgPwkx I am looking forward to hearing many more as the MidCentral prototype gets under way and Waikato continues.

Calling for 2018-2019 members Apply to become a Parent to Parent General Member and get this magazine free! Membership costs $50 a year and you also get: • AGM voting rights (November) • Our annual report • Invites to local/national events • Exclusive offers • Magazine advertising incentives and discounts

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Incentives to sign on other members Acknowledgment of your membership Perpetual members pay a one off $1,000 for the same conditions, and we also offer memberships tailor-made for charities and corporates. For a membership form and information email suep@parent2parent.org.nz. Parent to Parent July 2018 5


Voices of Change

Kylee Black is a social entrepreneur committed to cultivating community and enabling the best in others. Photo: ALAN GIBSON, The New Zealand Herald

Meet

Kylee Black F

rom the Waikato, Kylee is using her growing profile to influence change in the disability sector.

In 2009 she founded the not-for-profit Spirit Sparkplugs to mobilise community awareness and support young people with rare diseases. Volunteers made items for over 1200 ‘care and encouragement’ packages sent to nine countries. Kylee identified a need in this area through her own journey with the rare disease Ehlers Danlos Syndrome, and in 2011 she received an International Heart of Gold award for her contributions. Kylee joined the MyCare team in 2017 as an advisor and advocate of self-direction, and is involved with projects with MyCare, the Ministry of Social Development, the Ministry of Health, and Enabling Good Lives (EGL). She is one of the first users of EGL, which enables her to directly manage her government funding and hire her own workers. She is now a co-facilitator for the working group projects as the NZ

Paddy challenges perceptions A British 11-year-old boy who has cerebral palsy, epilepsy and is unable to speak is visiting schools with his mum in a bid to change children's perceptions of disability. Gemma Cardona set up Paddy's Purpose with The Dorset Children's Foundation to "have children, like her son Paddy, be accepted and not feared".

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disability sector undergoes transformation. "We want to ensure those with disabilities are on the frontline of disability leadership." Kylee also runs her own speaking and consultancy business and has addressed a variety of people within different settings, including parliament, national and international conferences, and a range of local events. Her goal is to see young people encouraged and supported in redefining their own circumstances, challenging perceptions of how we view others and ourselves, and enabled to live the best life that they can. "I want to use my story to challenge people to see life differently and to live differently, to capture the good memories and moments, because that's where real life is.” Most recently, in May she travelled to Europe and the UK to attend the International Initiative for Disability Leadership conference.

They spend up to three weeks in a school hosting interactive workshops and interacting with pupils. The results are heartwarming – children see Paddy as a regular and pretty cool kid, and clamour to push his wheelchair around schools. https://www.bbc.com/news/av/uk-englanddorset-44468024/the-youngster-challenging-children-sperceptions-of-disability


News

What’s in a sign name?

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eaf people around the world have given the POTUS his own sign language nickname, while closer to home our PM and Deputy have theirs.

During New Zealand Sign Language Week in May, Deaf Aotearoa collaborated with PM Jacinda Ardern to launch the NZSL Week Leaders Challenge where it supported the PM to make a short video in sign language. In preparing for filming, Deaf Aotearoa talked with her about a sign name.

BIG SMILE: PM Jacinda Ardern has a friendly sign name. Photo: SUPPLIED

A sign name is proposed from within the deaf community by people who are fluent/native speakers of sign language. Usually a handle given among friends, sign names are unique to the individual and, like a birth name, are given not chosen. Great care is taken to observe the person before they receive their sign name, not just looks, but personality or mannerisms. Protocol is to check that the sign name is acceptable to the person, although derogatory sign names would skip that stage.

For POTUS Donald Trump, his hair caught the attention of the deaf community. His sign name is made by placing a hand over the head and letting the fingers wave in the breeze, mimicking his floating side-swept forelock.

Our PM did accept a sign name proposed by Deaf Aotearoa – it is like signing one of the NZSL signs for “BIG-SMILE” but with one hand.

View the video at: bit.ly/2I1c4LD

Signing in Question Time

Tomorrow’s Schools Review advisory panel wants feedback

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ew Zealand Sign Language is now a permanent fixture of Question Time broadcasts.

Parliament is providing a sign language interpreter for every Question Time, as well as the Prime Minister's weekly press conference after she meets with Cabinet Ministers. In previous years, an interpreter was provided during Sign Language Week, with closed captions available on Question Time broadcasts the rest of the year. Closed captioning continues to be provided alongside the interpreter. Question Time is the chance for MPs to ask Ministers questions. It's typically the rowdiest, fastest-moving part of a sitting day. It usually starts at 2pm, lasting for an hour. For Opposition MPs, Question Time means testing and challenging the Government. For Members of the governing parties, it usually means lobbing a soft-ball question to a Minister. Credit for the initiative goes to Clerk of the House David Wilson with support from Speaker Trevor Mallard.

Deputy PM Winston Peters has a similar sign. When referring to the leader of NZ First, deaf Kiwis make a waving gesture over their heads, as if slicking back the 73-year-old politician's wavy grey hair.

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ave you ever lodged a complaint with your child's school in recent years?

If so, the Tomorrow’s Schools Review advisory panel would appreciate your participation in this survey. The purpose of this survey is to assess if the current complaints process within the New Zealand school governance and management systems is effective and fair for all students and their families, including those with special learning needs. The data collected will be shared with the Tomorrow's Schools Review task-force, in order to identify and reiterate the need for an independent and fair complaints process for all students and families. Have your say at: www.surveymonkey.com/r/JRH58ZX

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Opinion

Changing attitudes to create a better future By PAULA TESORIERO MNZM Disability Rights Commissioner

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n my role I get the opportunity to talk to a lot of people. They share their stories, their experiences, their concerns and their hopes. Many talk about the discriminatory attitudes that they face that impact on their daily lives, their education, their employment and the services they access. From time to time we see some positive signs … the positive stories of disability, the inclusion of disabled voices at the Education Summits, a push for better data to understand the picture of disability in New Zealand. But the change is slow. Examples in the media this year that have made me reflect on these attitudes include: •

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My initial joy when a Wairarapa student with Down syndrome became a school prefect. Fabulous, I thought. Followed by my wish that in the future this is not newsworthy; it’s just business as usual that young disabled people are prefects. The Stuff story of a Manawatu teenager with autism talking about the importance of employment for disabled people. But it is sobering sometimes that disabled people still have to advocate that ‘We can do anything’. Many disabled New Zealanders have a unique set of skills they bring to a new job, yet the unemployment rate of disabled people is twice that of non-disabled people (Labour Market Statistics (Disability), June 2017 quarter).

Parent to Parent July 2018

My sad reflection on the story of bullying of a student with Down syndrome at a Wellington school. It speaks to the more frequent bullying of disabled children in our schools and their over-representation in exclusion and suspension figures. BullyingFreeNZ says that disabled students are more likely to be bullied than their nondisabled peers.

One of my top priorities as Disability Rights Commissioner is to shift attitudes about disabled people in New Zealand. My view is that these remain at best indifferent, at worst discriminatory, and underpin how disabled New Zealanders are treated and valued for their contribution to society. Currently 42% of disabled young people aged 15-24 are not engaged in education, employment or training (Household

My initial joy when a Wairarapa student with Down syndrome became a school prefect. Fabulous, I thought. Followed by my wish that in the future this is not newsworthy; it’s just business as usual that young disabled people are prefects.


Opinion

BULLIED: Holly Reid, 15, with her dog Toby. Holly was bullied at Wellington East Girls’ College last year.

Labour Force Survey, June 2017 quarter). If we want a progressive New Zealand, then turning these statistics around is critical. It makes economic sense too. It is estimated that a two per cent increase in productivity for disabled New Zealanders would lead to a GDP increase of $862 million. I believe that addressing underlying attitudes about disabled people would go a long way to changing these outcomes. According to the Statistics NZ 2013 Disability Survey, 24% of the New Zealand population identified as disabled – likely to increase with our ageing population. Māori and Pasifika communities face higher rates of disability as well. The New Zealand Disability Strategy 2016-2026 vision is that New Zealand is a non-disabling society – a place where disabled people have an equal opportunity to achieve their goals and aspirations, and all of New Zealand works together to make this happen. Progress towards full and equal rights for disabled people comes down to attitudes and a willingness to remove barriers. A 2014 study from the UK shows that the negative attitudes experienced by disabled people are one of the most significant barriers to them living the life they choose. Another UK study earlier this year found that shifting these

Photo: KEVIN STENT / STUFF

A 2014 study from the UK shows that the negative attitudes experienced by disabled people are one of the most significant barriers to them living the life they choose. attitudes needs to be at the centre of any programme designed to ‘ensure equality for disabled people’. One of my first orders of business is to find out what the attitudes about disability are in New Zealand. We are working with UMR Research to design a nationwide online survey to do this. To change attitudes we all – disabled and nondisabled – need to better understand what they are. I’m excited to continue to talk about issues and challenges facing disabled New Zealanders and their whānau, and I encourage you to do the same.

Follow Paula on Facebook www.facebook.com/ PaulaTesorieroHRC/ and Twitter @paulatesoriero

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People

TRAILBLAZER: Toni Burgess (aka Antnz) is an outdoor recreation instructor tackling a new role as part of EGL. Photos: SUPPLIED

Opening doors to the outdoors By MONICA HOLT Freelance writer

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arly last year, Toni Burgess (Antnz) turned up to a public meeting to hear about transformations in the disability sector.

But why was she really there? “I went along to see what the latest round of bull**** Government consultation was really about!” As it turned out, the Palmerston North woman was asked to put herself forward for a senior role in the Enabling Good Lives programme being prototyped in Manawatu from October this year. Antnz – a “wobbly walker” since a back injury while playing softball in 1999 – is a member of the Mid-Central Leadership Group, implementing Enabling Good Lives in the region. Having spent her career in the outdoor adventure field as a trailblazer in adaptive practice, the new role has been a huge learning curve. “I am an outdoor recreation instructor. I have done a bit of

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youth work in the past but never really any disability specific advocacy work. “I have done a lot of advocacy for myself, so for me it has been about transferring all those skills from the other work I have done to the sector.” The Enabling Good Lives programme, successfully trialled in the Waikato, allows people with disabilities a greater say in their day-to-day life activities, like when to get up, what to eat, and when to go to bed. Antnz says with more tailored support, disabled people can lead more ordinary everyday lives, as well as enjoy the lifestyle New Zealand has to offer. Antnz loves the outdoors, much of which has been spent in her “favourite playground” Tongariro National Park in the central North Island. She qualified as an outdoor recreation instructor, following a low point in her life after reinjuring herself in 2000. “I sort of mucked around and didn’t know what I wanted out of life and got really depressed about the situation I found myself in.”


People

She became involved in wheelchair rugby and athletics, and an email arrived from Parafed Manawatu. “They said there is an organisation that wants to trial something in New Zealand; they are looking for people with physical impairments, who are comfortable with their limitations and are physically fit, and they want to do some ‘integrated adventures’.” That organisation was Back Up New Zealand which took equal numbers of able-bodied and disabled athletes on adventure activities for a week. “We went out kayaking, climbing, abseiling, hiking, scuba diving, paragliding.” That experience was to change the course of her life. “That day I saw a guy, a C3 tetraplegic. He basically had his deltoids and triceps, so a couple of shoulder muscles and the ones on the back of your upper arm. I watched him pull himself up seven metres of rope and thought, hey, if he can do that what is stopping me? “So that is where it all started. “So at the end of that week I called my partner and said, hey, what adventure courses do the local Polytech provide?” Antnz went on to get a L2 certificate in Recreation and Tourism, a Diploma in Adventure Ecotourisim, and qualifications through the New Zealand Mountain Safety Council. “With the disability stuff, they were all freaking out and thinking I would be a danger to people. But I managed to stick with it and ended up doing my outdoor leader certification, my abseiling and top-rope qualifications.

“I went along to see what the latest round of bull**** Government consultation was really about!”

“I am like a junior bushcraft instructor and a climbing instructor.”

“I ended up having a 45-minute conversation with this person who was not even going to let the special needs kids even have a look at the abseil tower, let alone have a go. It was like, seriously, you are arguing with me over this?

With her forthright style, Antnz challenges perceived limitations of people with mixed abilities. She is building a business to work with people of mixed abilities to better access both the fitness and outdoor industries.

“But at the end of the day, she actually came up to me and said, ‘you know what, I am actually really glad you pushed me on that, because all day I have heard, ‘so and so has given it a go, why can’t we?’.”

“So what I want to do more of in the future is to train outdoor education professionals on adaptive practice so they can’t use ‘oh you are a safety risk’ as an excuse to decline people.”

And did the kids have a go? “She ended up letting them do it, yeah, but only because I argued with her for 45 minutes!

Antnz recalls a conversation she had with a deputy principal while working at an abseil tower.

“She was concerned about time more than anything else. Realistically, it does not take any more or less time, you have just got to set up things differently.” Antnz says it is her dream to see more people out there and

Parent to Parent July 2018

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People “You know, New Zealand is the adventure capital of the world, why are we restricting 20 per cent of our popuation from accessing it?” active. “You know, New Zealand is the adventure capital of the world; why are we restricting 20 per cent of our population from accessing it?” Antnz and her assistance dog Ben. Photo: GRANT MATTHEW / STUFF

Antnz says she likes to see all people blossom and flourish and have a good go at life. A keen climber, Antnz helped facilitate a Paraclimbing competition at the National Climbing Championships for Climbing NZ. She is also a member of Parafed Manawatu. Antnz’s profile on the Enabling Good Lives website says inclusive practice is a term used in both the disability sector and the Rainbow (GLTIA) community, and she would like to ensure that intersectionality needs are met for all people regardless of their diversity. Antnz lives in Palmerston North with her partner, and has a mobility dog, Ben, through Assistance Dogs NZ Trust to help with day-to-day tasks. “One of his main tasks is retrieval. Things like my walking stick or my cane if I drop it; car keys, Eftpos card, pens, that sort of thing. Ben has a back pack which can carry six kilos and goes with her on outdoor adventures. “He is brilliant.”

We’re here to help

T

he MidCentral region is the prototype for Enabling Good Lives, and the Parent to Parent / Care Matters relationship is, as always, incredibly supportive of parents and families surrounding children of all ages and varying types of disabilities. Parent to Parent’s Manawatu regional coordinator Janine Morrah says, “We are doing this in two ways at this stage. Getting information out to the families is important as there is going to be such a massive shift in the way families can deal with funding and choices for providing care for their less-able family members.”

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The next step for Parent to Parent is to assist families in their choices around provider care and assistance, and families Parent to Parent July 2018

and parents are already considering grouping together. They may provide their own ‘best care’ for those in the community in similar situations. “We have been offering to facilitate and assist groups of people wanting to navigate the new system, so there are less barriers for people with excellent ideas they want to implement on behalf of their families and whānau. This is a real win-win situation for all in our community.” People in the MidCentral region are welcome to contact Parent to Parent’s Manawatu regional coordinator Janine Morrah: 06 355 0787 or manawatu@parent2parent.org.nz


Tribute

Disability advocate leaves legacy of vision and change John Baldwin (JB) Munro, QSO, JP, died in Christchurch on June 4, 2018.

B

orn on August 15, 1936 in Southland, JB was a self-described “community volunteer” known for his “anything is possible” attitude. He made a major contribution throughout his life to IHC and people living with intellectual disabilities. He also played a pivotal role in the most significant advance in disability rights in the history of New Zealand. His experience of polio as a child and as a state ward gave him insight into the vulnerability of childhood and what disability meant for children and families. At age nine he was adopted by William and Lily Munro, farmers from the outskirts of Invercargill who fostered children when their own, including Burt Munro of World's Fastest Indian fame, left home. More than 100 children were cared for in the Munro home. Educated at St George Primary (now Fernworth Primary), Tweedsmuir Junior High, and Southland Boys’ High School, he led the local Boys Brigade chapter, and was superintendent of a Sunday school that had 35 volunteer teachers working with 400 children. After two years’ youth work in Sydney, he returned to New Zealand, married his fiancée Val (nee Sharfe), and shifted to Dunedin to work for the YMCA. He ran weekly and fortnightly dances which attracted up to 500 young people. JB was a clerk for the Vacuum Oil Company (1954 to 1957); secretary for the YMCA in Invercargill, Australia, and Dunedin (1958 to 1968); Southland administrator for IHC New Zealand (1968 to 1973); chairman for the Paraplegic Trust Appeal (1973); and set up the Fundraising Institute of New

Zealand. In Parliament, he championed the ground-breaking Disabled Persons' Community Welfare Act in 1975. The Bill gave disabled people community services as of right for the first time. For seven years, he chaired the New Zealand Federation of Voluntary Welfare agencies, and was vicechairman of the 1981 Telethon, which raised NZ$6 million and which funded teletext in New Zealand. He was an Invercargill city councillor and Labour Party candidate. During his 20-year reign as IHC national director, in 1983 he persuaded IHC to gift $5000 seed funding for Parent to Parent to establish in Auckland. JB was awarded the Queen's Service Order in the 1990 New Year Honours for public service. In more recent times, he was president of Rotary Mosgiel and served on Rotary's international service committee. The New Zealand wing of Rotary International's disaster relief ShelterBox project has raised millions of dollars since JB was its first secretary. He has also raised funds, and served as international chairman for seniors’ community housing organisation Abbeyfield. In 2014 he was inducted into the Hall of Fame at IHC’s Attitude Awards. The Hall of Fame is the awards’ highest honour, recognising and celebrating outstanding individuals who have given life-long service to the disability community. Parent to Parent presented JB with lifetime membership in Dunedin on March 11, 2016.The award acknowledged his contribution to Parent to Parent, and his lifetime of contribution to the lives of people with disabilities.

Parent to Parent July 2018

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Opinion

The role of families in a transforming service environment By LORNA SULLIVAN, MNZOM

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ver the past four to five years families have been watching and where possible contributing to the thinking and development that has gone into the Enabling Good Lives approach to the reform of the Disability Support System in New Zealand. This development has now reached the point in its development where implementation will begin in earnest, and will over the next few years begin to have an impact on what is possible in the lives of people with disabilities across the country. While we need to acknowledge that Enabling Good Lives, by providing access to personalised budgets or Individualised Funding is a major step in the right direction, it is not a panacea for the ills of the system. Neither does money

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think, so if the Enabling Good lives reform is to authentically change life opportunities for people with disabilities, clarity around what is both desirable and achievable is a necessary prerequisite. It is important to acknowledge from the outset that such clarity must sit with families, and it will be beholden on families to sustain each other in relentlessly pursuing what are full, meaningful and inclusive life opportunities for their family members. It is time now, then, that we begin to reflect on the critical role of families and family leadership, in ensuring that such reform does indeed enhance the lives of our children and better empower families in their decision-making roles. This speaks to the need for the ‘natural authority’ of the family to be formally recognised, and for families to be assisted and enabled to govern the services and supports made available to their family members.


Opinion Michael Kendrick has provided a seven-point framework defining the natural authority of families (page ?). In it he says, “It can sometimes help to remember that families have a natural authority of their own which can go a long way to reducing this imbalance of power and authority. In order for this to happen, however, families need to appreciate this natural authority and be willing to act on it.” It is interesting at times like this, when as a country we are engaging a major change in how services and supports are to be designed, to give consideration to those assumptions and stereotypes we have already overcome before turning our attention to the many challenges we are still left with that stand as barriers to our children attaining a good life. If, as families, we are to authentically benefit from the coming changes, we must confront the issues around what constitutes a good life and why society appears to believe that a good life is the domain of the privileged. That for people with disabilities, life in the managed space rather than shared space was as good as we could hope for. Because of the vision of families who have come before, those families who were instrumental in the establishment of Parent to Parent, we have moved from a time when young

people with an intellectual disability were still being sent into institutions as little children, where access to education and communality was not considered feasible, where outside of an institution the living options available were large hostels, or a life at home in perpetuity. How fortunate we are that at that period in our history there were families who were not prepared to believe that this was as good as it gets, and that there were professionals who dared to imagine better for the lives of disabled people. The opportunities presented by the Enabling Good Lives reform will be your time, the time of children still to be born and of those young families only now beginning on this journey. That is the legacy that you as families – who are relentless in your advocacy for greater authority and autonomy over the assumptions held about your children and the supports available to them – are laying down. What I do believe is if you have the same courage and determination as those that have gone before you to continue to imagine better, the young people of today will continue to outstrip what could ever have been imagined.

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orna Sullivan is board national president for Parent to Parent NZ, a role she took up in April 2018.

She has recently returned from Australia working as director of disability services for UnitingCare Community (UCC) across Queensland. Lorna has a long history of working for change in the disability sector, mainly in New Zealand, and is dedicated to changing the power dynamics between service systems, people with disabilities and their families. She is committed to working directly with people, families and communities to develop approaches that support the lives of people with disabilities and reduce life-long dependency on funded systems. She played an instrumental

role in developing the Individualised Funding scheme and was active in implementing change within service systems. Before joining UCC, Lorna worked as executive director for the Disability Services Act 1993 (NSW) with a specific focus on readiness for the National Disability Insurance Scheme and the transition of Australian Government services to its NGO sector. Prior to this, her roles in New Zealand included chief executive of independent NGO ImagineBetter, NZCCS national services development manager, and coordinator of the International Initiative for Disability Leadership. Parent to Parent July 2018

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Support Parents

Circle of support is a ‘new home’

By NICOLE ALACH Parent to Parent Northland Support Parent

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hen Zane was diagnosed with GRIN2B syndrome, I still remember the phone call – I was in the kitchen making dinner.

Six weeks earlier we had attended a paediatric appointment, referred by an early intervention teacher from the Ministry of Education. At just 13 months old, Zane’s developmental delays had us all thinking autism, but the paediatrician requested blood tests to rule out a genetic condition. I remember her voice, cracking as she said, “His results are back, and I have never seen anything like this.” My knees gave out and I fell backwards caught by the pantry door. She spoke for several minutes about chromosomes and genetics, and I didn’t hear a word. I requested an appointment that I could bring all my family to, as all I knew was this is going to be something I know nothing about and would not be able to explain. That paediatric appointment went much like every appointment we have had since: “There’s not a lot of research about this”, “I really can’t tell you what to expect in

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the future”, “Have you Googled it? Well then you probably know more than me.” I had Googled it. Of course I bloody Googled it – didn’t you at least Google it genetic specialist? The emotions that go along with a rare diagnosis are confusing. There is nothing to say that my son’s life will be shorter than anyone else’s, there’s no evidence of developmental regression associated with his condition, I still have my gorgeous curly haired boy here with me every day, and yet I felt overwhelmed with grief. Grief and anger and confusion, and fear – so much fear. My best friend had lost her first child at seven months pregnant, and that was grief. We all grieved for him, but I watched my friend grieve for him as a mother. And that was real, and that was raw and justified – he was gone. My son’s not gone, but yet I feel such loss. The road to Parent to Parent Our paediatrician referred me to Parent to Parent and I quickly signed up for the Renew course. I had become lost


Support Parents

in a world of genetic and neurological research that I didn’t understand, and it was driving me crazy. The feeling I had when we went around the room and introduced ourselves – there was another lady there with a son with a genetic condition, a lady with a daughter with a rare form of cancer … it sounds terrible, but I felt like these were my people now, these are the mothers that will understand me. It felt like my new home. Training to be a Support Parent I knew I was grieving and searching for some counselling or tools to help me through all these feelings I knew would be part of my new life. I went to my GP, to a free community service, and nothing was available to me – nothing that could actually help. So, I signed up for another Parent to Parent course I was told explained grief. This was the training to become a Support Parent. I had not intended to help anyone else initially; I was still very fresh and trying to find my own way, but through that training and meeting the other parents I think I was able to arrive at a new place. I still lose it, I still break down, usually when we conquer

a new milestone and I picture the next one ahead – it still all looks so hard. But it’s the support systems you build up around you that will get you through – they get me through. Being a Support Parent empowers me; helping other people helps me as much as it helps them, and all these people are part of the network that I know will catch me when I need it.


Support Parents

Father-daughter duo making a difference By CLARE CHAPMAN Freelance writer

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van Sullivan has dedicated his life to advocating for others. It’s come about in a roundabout way – he has four children, three of whom have been diagnosed with differing forms of Autism Spectrum Disorder, he works as a community service worker for Idea Services and volunteers in a number of capacities, including for Parent to Parent. But recently Ivan, who lives in Tauranga with wife Belinda, stepdaughter Karleigh Jones, 25, and one of his sons now aged 27, faced his own mortality. “After I had a small heart procedure, I decided I wanted to stay in shape and now I’ve nearly lost 30kgs,” he says. He’s done this by getting involved with a new chapter of Achilles International in Tauranga and pounding the footpaths with Karleigh. Achilles International’s mission is to enable people with all types of disabilities to participate in mainstream running/walking events to promote personal achievement. Karleigh, who Ivan’s been father to since she was eight, was diagnosed with Asperger syndrome as a child and also has keratoconus – a progressive eye disease in which the normally round cornea thins and can bulge into a cone-like shape causing distorted vision. She has done incredibly well, now two years into a Bachelor of Social Science majoring in social policy at The University of Waikato’s Tauranga campus. She’s studying part-time, and chose the field because she knows she’ll be able to use her learnings to help others – something that seems to run in the family. “Achilles International is a great organisation. They find ablebodied guides and connect them with a person who wants to run, bike or walk, and the guide will help them train and participate in events,” Ivan says. “We’re doing it for fun as a father-daughter thing and as a way to stay in shape. It’s a great family thing to do. We get

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Parent to Parent July 2018

POUNDING FOOTPATHS: Ivan Sullivan and daughter Karleigh Jones. Photo: SUPPLIED.

out there and end up helping each other and pushing each other on.” In Karleigh’s case, while she is able to see clearly with her contacts, if she has any issues with them her vision becomes distorted, so she needs a guide for any physical activity. “I started doing these events last year and dad has been my guide, which is so amazing,” Karleigh says. “I love being out in the community and I feel equal to everyone else out there on the course because people don’t see me for my differences; they see me as someone awesome.” Ivan and Karleigh have completed numerous running events in the past few months – the latest a 5km event they walked together in early June. It was a tough one, but neither put the brakes on. “We didn’t back out of it even though the weather was so awful,” Karleigh says. “We were walking through the rain and it was really cold. But when you finish, you feel this real sense of achievement. I feel so proud and I feel amazing. I think dad’s having trouble keeping up with me now though!” The running events aren’t the only challenge where Karleigh is feeling a sense of pride in her achievements. At her university campus she’s studying part-time and knows the routines and workings of the institution more so than many other students. “I’m an old hat there now so I can help the other students with any issues. I’ve been a student representative for my papers, which means I’m helping students when they have an issue.” Karleigh’s keen to continue helping people when she graduates too. “I know when I’m finished my degree I can make a difference in other people’s lives.” For Ivan, he’s got similar ambitions and he’s already achieving many on a daily basis. He was initially involved in Parent


Technology

Apple plans disability emoticons

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here appears to be an emoji for almost everything – to express emotions and topics including weather, food, state of mind, and plans for your day. A few years ago, Apple added skin tones and racial identities to be more inclusive, but out of the current 2666 emoticons the only one representing disability is a wheelchair symbol added in 2005. In March, Apple submitted a proposal to the Unicode Consortium requesting the addition of emoticons that better represent the diversity of people with disabilities. The 13 new emoji include a hearing aid, people using canes or wheelchairs, a service dog, prosthetic limbs, as well as people using sign language. It’s not a comprehensive list, but Apple has hinted there are more to come, and they will raise awareness of the diversity of people using smart phones. If approved, the emoji are expected for release globally in mid 2019.

Continued from previous page to Parent a few years back but felt his knowledge had become a bit rusty, so he recently redid the Support Parent training and he’s keen to be a paired up with anyone who needs someone to listen in the future. Ivan and wife Belinda also run a monthly social group for people with ASD in Tauranga, organising events and catchups. “We don’t get any funding to do this, but we think it is so important to take everyone out and get people together to socialise in a forum where they don’t feel like anyone is judging them and everyone understands.”

FLYING: Justin Gallegos training for his first half marathon in the Nike shoes he helped develop. Photo: SUPPLIED.

Runner with cerebral palsy helps design shoe

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ike has added to its collection of shoes designed with accessibility features for people with disabilities.

Available from July 1 on its website, the Nike Air Zoom Pegasus 35 FlyEase was developed in consultation with Justin Gallegos, a member of the University of Oregon track club who has cerebral palsy. Nike designers worked with Justin as he trained for his first half marathon, closely observing the landing kinetics of his stride to learn which areas of his shoe to reinforce, and listening to his needs to make a shoe that would be easy to get on and off. The result features a zip-and-strap enclosure. “I want people to know that this technology exists, and regardless of what your sport is, [this] technology can help you; it can change your quality of life in incredible ways,” said Justin who clocked a time of two hours and three minutes in the race.

Parent to Parent July 2018

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Technology

Kiwi sign language game a world first By WILHELMINA SHRIMPTON Newshub

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n a world first, a Kiwi innovator is using the world of gaming to teach kids sign language. Adele Hauwai is currently developing the digital learning tool which uses a computer, a camera and hand gestures. "What can stimulate everyone to learn sign language in a fun way?" she asks. "So this is where the idea came, of educating kids sign language through the means of games." Ms Hauwai has been learning and teaching sign language for 30 years, and decided now was the time to capitalise on the rise of gaming. "Especially since technology has come along literacy has gone down, I've been hearing a lot of feedback from teachers and from parents," she says. "So we are trying to use the means of technology to educate." It works like this. Your character walks through the game, and needs to take a drink. A clue pops up, and shows you the sign. You do it while a camera reads your gesture – and if it's right, you move through to the next stage. The game is currently a prototype and Ms Hauwai aims to launch the full version at the end of the year. She says it'll have multiple levels, be more advanced, and will be translated into other sign languages. She's already been overwhelmed with interest. "I've already got waiting lists of orders ... hundreds of orders." The game will be sold to schools, and parents will be able to download it or buy in stores. There's even talk of developing versions compatible with Playstation and Xbox. Ms Hauwai says the game is for everyone, and not just those with hearing or learning difficulties.

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Parent to Parent July 2018

‘Humane AI’ initiative for people with disabilities

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icrosoft said in May it will commit $25 million to a five-year programme making artificial intelligence (AI) tools available to developers to create ‘accessible and intelligent’ solutions to benefit people with disabilities. Microsoft president Brad Smith said there are about a billion people around the world with some kind of disability, either temporary or permanent, “and it's for these people, and those who will come after, that Microsoft is committing to this investment”. “By innovating for people with disabilities, we are innovating for us all. By ensuring that technology fulfills its promise to address the broadest societal needs, we can empower everyone — not just individuals with disabilities — to achieve more. “AI can be a game-changer for people with disabilities,” he said, and that it will provide more opportunities for independence and employment. Called ‘AI for Accessibility’, the initiative will include seed grants for developers, universities and inventors, investments in promising projects, and AI inclusive design across products from Microsoft and its partners. Microsoft has already experimented with its accessibility tools such as the ‘Seeing AI’ free smartphone app using computer vision and narration to help people navigate if they're blind or have low vision, and its translation tool provides deaf users with real-time captioning of conversations. Microsoft CEO Satya Nadella, whose son Zain has cerebral palsy, said: “We should be asking not only what computers can do, but what computers should do. That time has come.”


Technology

Microsoft learned from working alongside gamers with disabilities that aesthetics is important. It is easy to assume that the functionality of a device is enough, but it isn't. Gamers abandon devices that look big, awkward and unappealing.

New controller makes gaming more accessible

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he new Xbox Adaptive Controller allows gamers with limited mobility to plug in their own joysticks, buttons and switches to mimic a standard controller. This means users will no longer have to rely on the default buttons that come with the Xbox and can choose which assistive aids carry out each function. The wireless device, powered by an internal battery, features two large programmable buttons, USB ports, and 19 jacks for external thumbsticks and buttons. It is compatible with Windows 10 and was developed in collaboration with UK gamer charity Special Effect, among others. A report by charity Muscular Dystrophy UK found that more than one in three people said they could not play video games because of their disability, and 80% of those surveyed felt the gaming industry “does not consider the needs of disabled gamers”. George Dowell, 25, who was left paralysed from the chest down after he broke his spine in a car crash in 2010, was among the first people to trial the device in the UK. “It’s brilliant. Before this I used arcade sticks that can be adapted for button ports, but they were unreliable, and I often had to ask someone to help me make them work.”

He said the new controller has given him more independence. To get the device right, the company made an important decision: they weren't just going to consult with occupational therapists and charities like AbleGamers and SpecialEffect during the development process, they were going to include gamers with disabilities from the outset. For Microsoft it was a radical move – it had never invited the gaming community into a hardware design before. The company built an Inclusive Tech Lab at its Redmond campus, a tennis court-sized room complete with demo stations, a lounge area with 70-inch TV and a conference space, where gamers and experts have been brought in for "inclusive design sprints". Everything is disability focused – the desk heights are adjustable for wheelchairs, the brightness and colour of the lighting can be customised for people with visual sensitivities, even the coffee machine has Braille controls. "It's an embassy for games," states Evelyn Thomas, Microsoft's accessibility programme manager for Xbox. "We want people to intentionally include disabled gamers in our products". The Xbox Adaptive Controller will be released on Microsoft Store later this year. Parent to Parent July 2018

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Research

Autism and music: exploding the myths Are people with autism all musical geniuses? Are they born with perfect pitch? Can people with autism experience emotion in music? Do they play like robots? There are lots of myths about the musical skills of people with autism, but autism effects people in many different ways. People with autism are individuals, with individual strengths and weaknesses just like any other members of the community. Australian musicologist DR ANTHEA SKINNER PhD explores some of the myths around autism and music-making.

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Sound sensitivity

Musical genius

Many people with autism experience a heightened sensitivity to loud or sudden noises which can impact on their ability to enjoy some types of music. If you’ve been struggling to enjoy music because of heightened sensitivity, there are a number of things you can do to make you listening experience more enjoyable. Familiarise yourself with a piece of music by listening to a recorded version before you hear it live. This way you can control the volume and you won’t be startled by sudden loud passages. It also helps to be able to see the musicians playing while you listen – if you can see the drummer is about to hit her instrument, you’ll know when to expect the crash of the cymbals. It’s also worth investing in some high-quality noise-cancelling headphones for live performances. These will lower the overall volume without decreasing sound quality.

A small number of people with autism show outstanding musical ability. Often referred to as savants, this skill can come in two forms. In some cases people with autism are true musical geniuses, able to easily pick up complex music at a single hearing. Other people may have good musical skills which stand out in comparison to their ability to communicate in other ways. People with savant-like skills are best suited to playing musical instruments which are highly logical and intuitive, such as the piano or guitar.

Parent to Parent July 2018

People who have autism who are also blind or visionimpaired are statistically more likely to have exceptional musical skills. However, it’s important to remember that most musicians with autism are not musical savants; most learn their skills through passion and hard work just like the rest of us.


Research

Some people with autism develop an obsessive love of music and will spend hours practising the artform they love. Whether you are autistic or not, a love for music and longs hours of practise will always improve your musical skill, no matter how much talent you were born with.

Perfect pitch People with perfect pitch can tell you the name of a note just by listening to it. Research suggests that people with autism are more likely to have perfect pitch than the neurologically typical population. Moreover, people who have perfect pitch have been found to be more likely to display autistic traits, even if they don’t meet enough criteria to be diagnosed.

including No Goodbyes which featured on the band’s album of the same name. So what is the truth behind the myths about music and autism? Well, having autism definitely can affect the way you perceive and perform music, but it’s important to remember that there are no hard and fast rules that apply to everyone on the autism spectrum. People with autism are all different and they have the same range of musical skills and responses as the rest of us.

www.monash.academia.edu/AntheaSkinner Originally published in Link Disability Magazine

No one is entirely sure why perfect pitch is more common in people with autism, although some speculate that it may be related to their heightened sensitivity to sound. Having perfect pitch can be a great benefit in learning to play music, but perfect pitch alone doesn’t guarantee musical skill. People with perfect pitch can also face problems that the rest of us do not. For example, some find it physically painful to hear music which is even slightly out of tune, making a visit to the local primary school’s recorder concert an absolute nightmare.

Music and emotion Just like the rest of the population, autistic people’s emotional reactions to music vary widely between individuals. Temple Grandin, a professor at Colorado State University who lives with autism says that although she can intellectually enjoy music, she doesn’t experience any emotional response to it. However, many other people with autism respond strongly to music, and music therapy is regularly used to encourage responses in people who otherwise have trouble communicating. Emotion in musical performance is equally varied. Some people with autism may play mechanically, but others use it as a tool to express their emotions. For example Rory Burnside, lead singer of Rudely Interrupted has autism and has written a number of songs about love and heartbreak,

Parent to Parent July 2018

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News

Did BGT voters normalise disability? Lee Ridley

Robert White

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n June 3 the final of Britain's Got Talent attracted its biggest audience since 2015 – an average of 8.7 million viewers tuned in to see who the public had voted winner. Lost Voice Guy's victory – his real name is Lee Ridley – wasn't just notable because he was the first comedian to win in the show's history, but also because he has cerebral palsy. The runner-up, another comedian named Robert White, has Asperger syndrome. Both comedians made light of their own disability in their acts. So is this a watershed moment for disability on TV? "No," says broadcaster Mik Scarlet, who is now an inclusion and equality trainer. "I think it's just another one of those moments that happens throughout the history of media. "The media has always believed that the public can't cope with disability, but that's just never been my experience. "I was discovered in a similar, not quite so dramatic, hail of praise and glory in 1989, and I went on to become one of the most famous disabled presenters." Mik, who uses a wheelchair, became a familiar face to viewers as the presenter of Channel 4 kids TV show Beat That, and

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went on to acting roles in The Bill and Brookside. "Everywhere I went, all the people I met were fine with [my disability], they genuinely didn't care," he says. "What this actually needs to be is a watershed moment where the media wakes up to the fact that, actually, the general public is absolutely fine with disability." He adds: "Hopefully what might happen is now the media will stop making it such a terrible tragedy story. "It's very easy for them to shine a light on the public and go 'Oh look the public voted, they must have changed,' when actually this is the first time the public have been given the chance to vote." Disabled people have been represented on screen in a variety of other ways in recent years. Noughties comedy series Little Britain (which starred David Walliams, now a Britain's Got Talent judge), saw Matt Lucas play a disabled character who was secretly able-bodied. But now the comedy is coming from disabled performers themselves. Mik says he hopes Lost Voice Guy's win will open doors for a new generation of disabled performers.


Opinion

Hollywood doesn’t ‘get it’ By SUE PAIRAUDEAU

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e all know film and television can influence how people perceive others and break down stereotypes. Yet in this age of the #metoo and Time’s Up movements where actors are driving social justice issues, Hollywood continues to marginalise the disabled community with its inability to portray people with disabilities as positive and normal. Although nearly 20% of the 56 million people in the US have a disability, only 2.7% of the 100 top-grossing films included a character with a disability – and they were mostly male. Just 1.8% of television characters have disabilities – 95% of which were played by nondisabled actors. This hit home for me watching the 2018 Oscars where The Shape of Water made history for a number of reasons including the first film with a female lead (Sally Hawkins) to win an Oscar for Best Picture since Million Dollar Baby (Hillary Swank) in 2005. (I kid you not – before Million Dollar Baby, Chicago in 2003, Titanic in 1998, The Silence of the Lambs in 1991 and Driving Miss Daisy in 1990. As a rule, movies about women/for women are considered less serious or worthy of critical acclaim as male-centric melodramas.)

Russell (1947), Linda Hunt (1984), Marlee Matlin (1987) and Dan Keplinger (1999). Then there’s the issue of the stories. The Shape of Water is about a nonverbal woman who falls in love with an amphibious creature, who turns the scars on her throat into gills so they can live happily ever after underwater. Does this convey the message that if you are differently abled you’d be happier in another reality? In Million Dollar Baby Swank played a female boxer who becomes paralysed and decides to end her life – a dangerous message that death is preferable to life with a disability. These are not the only films to perpetuate negative views of disability. The 2016 movie Me Before You is about a man who becomes paralysed and falls in love with his caregiver. Six months later he dies by assisted suicide to avoid being a ‘burden’ to her. He was also played by an actor (Sam Claflin) without a disability. It’s alarming that these are the messages dominating films including disability, and that it is now normal for nondisabled actors to play disabled roles. We need a lot more disabled actors in the pool to better reflect normal society and drive change. Hollywood needs to get it right.

The female leads played by Hawkins and Swank share one other detail; a disabled character played by a nondisabled actor. While 59 nondisabled actors have won an Oscar for playing a disabled character, only four Oscars have been won by people with visible disabilities: Harold

Parent to Parent July 2018

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News

Luca Paiardi and Danilo Ragona. Photos: Lara Vacchio / Euronews.

Danilo’s fashion wheelchair has graced catwalks in Milan and Rome.

The two Italians changing the world of disability

By LARA VACCHIO

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uca Paiardi and Danilo Ragona's friendship began 20 years ago in the spinal unit of Turin’s Orthopedic Trauma Centre in northern Italy. Separate road accidents had left the boys in wheelchairs and unable to use their legs. But for them, their disability marked a new beginning; the beginning of a new life and a deep desire to show others, who face the same difficulties every day, that they can still enjoy a full, exhilarating life despite their physical barriers. Four years ago, the Italians launched ‘Journey to Italy’, a travel project which invites disabled people filled with adrenalin to take part in (sometimes) extreme sports — at home and abroad. “We’ve been to Fuerteventura last year, Rio this year and we are planning to go as far as Ladakh, a northern region of India, and South Africa,” says Luca, who works as an architect and musician by day. “What we really would like to show is the possibility for disabled people to travel and live their everyday life being able to do sports, to travel around and play an active role within our society.”

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The pair’s latest exploit was to conquer Italy's highest climbing wall. But Danilo says the real challenges are not always the things that look the most difficult. “Going to work, going out to do sport is not difficult because these locations are inaccessible, but because it is hard to simply get out of your house,” he says. “Your house is already a place with its own barriers so living your everyday life is already the hardest part.” In an effort to make life more accessible, Danilo founded Able To Enjoy, an online retailer of wheelchair accessories, spare parts, and even wheelchair-friendly camping products. The entrepreneur had also designed and patented a superlight and compact wheelchair that could be taken on board a plane as carry-on luggage, or adapted for off-road or sports activities. In 2016, his innovative and stylish product featured on a Milan runway during Fashion Week, and has just been on a catwalk in Rome. “You need to make a lot of changes to suit your body change,” says Danilo, who believes more companies should work with and invest in products for the disabled. “There is a need to build a business focused on allowing people to go out of their houses, and travel and live free of barriers.”


News

Swapping houses designed for people with disabilities

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ritish doctor Theo Blackmore has re-launched the world’s first disability specific house-swap website for disabled people to go on holiday.

The house swap idea is not a new one, however, no one had thought of how it would work specifically for disabled people and families with disabled children. “It makes so much sense – my house, which is accessible for me as a wheelchair user, will probably also be accessible to you if you’re a wheelchair user,” says Dr Blackmore, who conceived, designed and runs the website. “No longer do you have to rely on a travel agent or a hotel to get it right. On this site it is one disabled person talking to another about exactly what they need.” A sophisticated database system matches your property with similar properties on the database across the world. You decide where you want to go, make contact with the home owner, and arrange the dates and details for your swap.

“Before you leave your property you write a list of places you like to go where they welcome disabled people and where you have a good time, and leave it for your visitor. When they arrive not only do they have an accessible property to stay in, but they also have a list of local knowledge about the places to visit.” You also get to see what it is like to live in a regular neighbourhood, away from the tourist traffic. “One person used matchinghouses.com to swap their property in London for a week in Paris. They have become good friends and now they do the same swap every year. It’s become like a home away from home for them!” Over 250,000 people swapped properties across the world last year because it’s a popular way to holiday – the home you stay in is free. “We need people to sign up, so we’re starting the new life of the site with a free registration process. At some point we do plan to charge a small fee, but for the moment it’s free.” www.matchinghouses.com

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Books

Helping kids learn about feelings through stories

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dam Millen is usually an engineer, but an article about how important it is for kids to know words like ‘overwhelmed’ and ‘frustrated’ inspired him to apply his skills in a very different way. “The article made a great case for the power there is in knowing that what you’re feeling has a name, and other people feel it too. But I knew that you can’t just read a fiveyear-old definitions from the dictionary. If you want kids to know the names for their feelings, you need to tell them stories – use the word in contexts they can understand.” Adam began planning stories in early 2015, then worked out prices for printing and illustrating. Finding the right illustrator was hard, but a fortunate connection put him onto Matt Haworth in Auckland who had the skills Adam needed. Matt had plenty of experience with creating lively illustrations for children and was able to produce the expressive faces necessary for a book about feelings. In order to launch his first book, Adam had a pre-order on the New Zealand-based crowdfunding platform Pledgeme. As well as ensuring that his idea was worth the expenses (about 100 people pre-ordered 200 copies of the book), launching by crowdfunding allowed Adam to engage with his readers-to-be before the book was finalised. This meant that backers of the crowdfunding campaign got to choose what feelings went into that first book, and they chose ‘overwhelmed, persistent, frustrated, brave and lonely’. It was also during the crowdfunding campaign that Adam

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Parent to Parent July 2018

Author Adamn Millen.

first had contact with the deaf community. Adam visited a New Plymouth Parents of Deaf Children association meeting, and decided there would be a lot of benefits to including New Zealand Sign Language in the books. When it came time to print the book, each story would begin with the feeling-word in all three of New Zealand’s official languages. In 2017 Adam quit his engineering work to take Jack Feels Big on the road, reading it to kids in more than 200 schools and childcare centres around the North Island. Adam has also made several visits to deaf centres to read to kids through sign language translators. All these readings showed how popular the book was with kids, parents and teachers. It was clear that it was an effective tool for developing a powerful emotional


Books vocabulary. So at the end of the year Adam crowdfunded again to produce a second book, with stories for five more feeling-words – ‘embarrassed, humility, grief, empathy and rejection’. This time the main character was a girl – Sophie (“I heard that girls have feelings too,” says Adam). After the most recent crowdfunding campaign Adam had 12 books to give away. “When I crowdfund, most of the people supporting the campaign are doing so because they want a copy of the book. But some of the support comes from people who don’t have kids of the right age, but they just love the idea. They order copies, but tell me to find someone to give them to”. There are still a lot of feelings that Adam would like to write stories for, and he plans to go out to the community once again. He often canvases his mailing list for their opinions on what feelings are most important and what stories best convey them to kids.

Illustrator Matt Haworth.

People can sign up for updates / resources / help me produce the next book at: www.jackfeelsbig.nz/updates People can see more of the books at www.jackfeelsbig.nz There are some resources (including sign language colouring-in sheets) at www.jackfeelsbig.nz/resources The Facebook page is www.facebook.com/jackfeelsbig

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Books

Jack Feels Big (2016); Sophie Feels Like Me! (2018). Written by Adam Millen, illustrated by Matt Haworth. Reviewed by Carolyn Jury, BAppSocSci (Counselling), Parent to Parent Support and Information Coordinator.

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hese lovely little books by Kiwi author Adam Millen aim to build the emotional vocabulary of young children by teaching them names and meanings for emotions, and promoting discussion about feelings and behaviours. Each book contains five scenarios, each based on a different emotion or personal value. Jack Feels Big discusses overwhelmed, persistent, frustrated, brave and lonely, while Sophie Feels Like Me! highlights embarrassed, humility, grief, empathy and rejected. Each book begins with a detailed description of how to use the books, and the intended outcomes of teaching these skills to children. The scenarios are short and easy to read, providing a clear explanation of the emotion or value in simple, relatable situations, and are wonderfully illustrated with colourful pictures by Matt Haworth. It is great to see the inclusion of NZ Sign Language for the Deaf, and Te Reo Māori (both of which are official languages of Aotearoa New Zealand) at the beginning of each story, with links to relevant sites for both provided. No age range is specified for these books. I contacted the author, who stated the target age range was three to seven

I felt some of the emotions described in Sophie Feels Like Me! were quite complex (for example humility, grief and empathy) and perhaps a little beyond the understanding of the targeted age range. The author said this was intentional, as the goal was to expand a child’s emotional vocabulary. The emotions discussed in Jack Feels Big seem more concrete and relatable to younger children. Overall, the books are a great concept. Emotional intelligence is a vital life skill and giving children the building blocks of emotional vocabulary is very necessary. Visually the books are very appealing and the stories are relatable to most children’s lives. The simplicity of the stories is great, and the suggestions for reflection scaffold learning and strengthen the adult-child connection.

win one of 2 books

VISIT O

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UR FAC EBOOK PAGE FO R DETAIL S

Parent to Parent July 2018

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years. His intention was that three to five-year-olds will enjoy the stories and become familiar with hearing the emotional words described, even ’though they may be too young to really understand the concepts. Older children will begin to understand the concepts and may start to use the emotional vocabulary to describe their own feelings. The books provide an opportunity for discussion with parents, teachers and other adults.


Books

The five

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languages

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n the New York Times bestseller The Five Love Languages, author Dr Gary Chapman talks about five different ways – or languages – people show their love for others and prefer to receive to feel loved.

in all five love languages, but figuring out their primary love language will help you show them love most effectively. Before you work out your child’s love language, it helps to work out your own.

Our preferred ‘language’ becomes more obvious with age.

Check out the five love languages. If you could only have love shown to you one way, which would you choose?

According to Dr Chapman, children need love shown to them

i Words of encouragement

m Quality time and attention

It’s very significant to hear others notice and comment on something you’ve done or said. “Thanks for helping”, “We couldn’t do it without you.” The words in notes and cards are important to you.

To have someone give you their full attention and really listen to you is most meaningful. You feel like they are there for you, fully present, and that they are enjoying this time with you.

h Gift-giving

z Physical closeness and touch

You love being given a gift that tells you the giver has thought carefully about what you like and what is important to you. When you buy gifts you think long and hard about the person and what they would really like.

Affection and closeness tells you that you are loveable and people like being with you. It might be someone sitting close to you on the couch, having your hair brushed, your hand held or someone just happy to be in your presence.

c Acts of service You feel loved when someone does a job for you so you can have a break, or maybe makes you a hot drink, a cake or does something that costs them something.

All the above are important and the trick is to become fluent in all five. It might feel awkward at first because we tend to want to show love to others the way we like to have love shown to

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us – and that’s OK. Our children and family will feel deeply loved when we can love them specifically the way they prefer to be loved. Parent to Parent July 2018

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Opinion

Families can discover the power of natural authority By Dr MICHAEL KENDRICK

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ith great regularity, consumers of services and their families will find themselves having to confront professionals, bureaucrats and others in roles of authority. Not uncommonly, the authority of these persons tends to overshadow the authority of ‘small people’.

It can help to remember that families have a natural authority of their own, which can go a long way to reducing this imbalance of power and authority. In order for this to happen, however, families need to appreciate this natural authority and be willing to act on it. Some of the common sources of authority families can call on when acting in the interests of a family member are: 1. The public generally recognises the primacy of families in terms of their responsibility for a person’s wellbeing. In this way, families have the authority to be highly engaged because they also tend to have greater responsibility for the wellbeing of their family members. 2. Families have authority (normally) arising from knowing their family member the most fully and over the longest period of time. In this way they have the authority that arises from long-term observation, insight and personal relationship. 3. Families typically care about or love their relative more than would be true of others, however committed others may be. Not only do families usually care more but they are also expected to care more. 4. Families have a stake in outcomes. For example, they have to live with the long-term consequences of service failures to a greater extent than any other party, except the person

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Parent to Parent July 2018

themselves. 5. Families are expected to advocate for their own members. Not uncommonly, they are granted considerable presence in their decision-making processes affecting their family members, even where legal formalities do not require it. 6. The family is an authoritative witness to the performance of professionals and systems and may have special (not necessarily exclusive) insight into events that take place. 7. Family members bring to their role a wide range of talents and experiences which can give them additional authority on many matters. For example, a parent might also be an expert educator. 8. Families are often best positioned to see how everything in its entirety adds up in a person’s life. For this reason they can often see the incongruencies of different interventions. 9. Family members are often free of the vested interests which call into question the credibility of other parties. Frequently family members are granted a degree of independence which highlights their credibility and purity of motive. While these common sources of authority do not resolve the question of ultimate authority, they do offer families some measure of security that their views should matter as much as, or more than, others who also claim authority in deciding what will happen to a person. Because it is very difficult for a person to advocate if they hold some doubt about the legitimacy of taking on the role, these points may help to strengthen the resolve to hang in there and advocate for your family member. Dr Michael Kendrick is an independent international educator, advocate, consultant and author, working mainly in the US, Canada, Australia, New Zealand, the Netherlands and the UK in the disability, mental health and aged care fields for nearly 30 years.


Research

Learning about …

Dyspraxia By CAROLYN JURY, BAppSocSci (Counselling) Parent to Parent Support and Information Coordinator

What is dyspraxia? •

May also be known as Developmental Coordination Disorder/DCD.

Motor coordination is significantly below expected for age and intellectual level.

There may be delays in motor milestones, clumsiness, poor handwriting, poor performance in sports.

The difficulties in motor coordination significantly impact learning and tasks of daily living (such as dressing, eating, personal hygiene).

Difficulties are not due to a medical condition.

Speech and language delays and/or other issues

Issues with vision due to lack of coordination of eye muscles

Social difficulties with peers and others

Poor academic performance

Possible behavioural challenges (tantrums, meltdowns, defiance).

Proven to benefit: •

Occupational therapy for coordination, development of daily living skills and sensory issues

What causes it?

Physiotherapy to build strength and coordination

No identifiable single cause.

Speech language therapy

Brain develops differently which affects ability to learn and acquire new skills.

Learning support and curriculum modification at school

Possible genetic factors.

Visuals to prompt memory and improve organisation

Premature birth and difficult birth increases risk of dyspraxia.

Break down tasks into simple steps

Encourage physical activity

Difficulties linking sensory input from joints, muscles and eyes with motor commands controlling muscle contraction, appropriate levels of force and timing of movement to perform actions.

Practise new skills daily to increase independence and confidence

Encourage problem-solving to facilitate resilience and confidence

Set realistic and achievable goals

Encourage participation rather than competition

Use multisensory approaches to learning new skills

Model tasks and use hands-on adjustment to develop bodily awareness

Teach social skills and emotional awareness

Allow extra time to process instructions and perform tasks

Offer lots of opportunities to practise

Give lots of praise and encouragement.

Commonly occurring effects: •

Difficulties with fine and gross motor skills

Difficulties using sensory information to plan, practise, adapt and control movements. Particularly affects tasks needing practise, planning, attention and memory

Difficulties in emotional self regulation, attention and focus and memory

Anxiety

Joint hypermobility

Poor fitness levels compared to peers – may be due to poor coordination and lack of participation in physical activities

Reluctance to try new things and often use avoidance strategies to reduce anxiety

Specialist support: Dyspraxia Support Group of NZ, Christchurch, ph 03 358 3249 or email dyspraxia.centre@xtra.co.nz

Parent to Parent July 2018

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New faces Julie Peake – Researcher Julie was raised in the rural King Country near Otorohanga. Her mother taught children with disabilities, and as a child Julie often had other children spending time in the family home who had a range of health and disability needs. After spending time living and working overseas, Julie returned to New Zealand and began tertiary study as an adult student. While studying Julie supported adults with autism as they transitioned into community settings. She has even spent time as a group exercise instructor. Julie graduated with an Honors (First Class) Degree majoring in Psychology and Sociology in 1998, and then went on to complete studies in social work, adult education, and a Postgraduate Diploma in Social Service Supervision (with Distinction). Julie is currently completing her Masters of Professional Practice.

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rom our fantastic artists who put so much time, thought and care into their creations, to the tens of thousands of Trade Me viewers, to our incredible sponsor Fastway Couriers Waikato — Parent to Parent would like to say a big ‘thank you’ to everyone who made our celebrity art auction a success. News of the auction travelled far and wide receiving national coverage with 1 News Now, Newshub, NZ Herald, a feature in the New Zealand Woman’s Weekly, and a live discussion between Jacinda Ardern and Jack Tame on TVNZ’s Breakfast.

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Prime Minister Ardern’s Parent to Parent July 2018 painting received the most

Julie is a registered social worker with the New Zealand Social Workers Registration Board (SWRB) and a member of the professional body Aotearoa New Zealand Association of Social Workers (ANZASW). She has more than 20 years’ social work practice experience in the disability field; statutory child protection (care and protection, youth offending and specialist child interviewing); the District Health Board; the non-government sector; adult education; management and advisory roles; Ministry of Social Development approvals; and in private practice external supervision at various times since 2002. She regularly guest lectures in social work qualifications to ensure that the tertiary sector remains relevant and connected to contemporary practice contexts. Julie is very excited to be joining Parent to Parent in July 2018 as a part-time researcher for the organisation and its Altogether Autism service.

views on Trade Me, heading upwards of 25,000 in the final hours of the auction. Her artwork, entitled To-Do List, went on to sell for the handsome price of $2,500. The artworks have headed off to their new homes and are now gracing walls around the country. Many of the winners have friends or family members with disabilities, and expressed gratitude for the chance to give back to the New Zealand disability community. From all of us here at Parent to Parent — our sincere thanks to everyone involved. See you next year! Top right: Fastway Couriers’ David Williams & Shaana Paterson Photo: Steven Mahoney


ON O R PA DE G R E 36

Our new tote bag

Our newly designed tote bag calls us to look beyond disability to see what our loved ones are truly capable of. The mandala design is both beautiful and complex, and the viewer must look closely to understand this important message. The perfect accessory for yourself or as a gift, the Parent to Parent tote bag is a powerful way to carry acceptance, love and understanding with you through the day. Order on page 36. Parent to Parent July 2018

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d n a b t s i r w rm o f r e d r o

rO derm for Tote bag $15.00 ea

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No. of packs

Pick up - Unit 3B, 99 Greenwood Street, Hamilton Postage (extra $2)

Postage – multiples (contact Suki) __max. $9.00 TOTAL $___________

TOTAL $___________

Name ____________________________________

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Delivery address _________________________

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Phone # __________________________________

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Payment via internet banking

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P2P Auckland - 03-0306-0191217-002 Ref: tote bag / your name

P2P Waikato - 03-0306-0191217-003 Ref: wristband / your name

Please scan this form to: auckland@parent2parent.org.nz OR mail to: Parent to Parent PO Box 300-881, Albany 0752 Queries to: Suki mobile 020 4160 0013 Your tote bag will be posted when payment is received :)

Please scan this form to: waikato@parent2parent.org.nz OR mail to: Parent to Parent PO Box 9112, Waikato Mail Centre 3240 Queries to: Carol 0508 236 236 • 027 808 3944 Your wristbands will be posted when payment is received :)

All proceeds go toward funding the vital services Parent to Parent provides for Kiwi families in need. Thank you for your purchase!

All proceeds go toward funding the vital services Parent to Parent provides for Kiwi families in need. Thank you for your purchase!

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Parent to Parent July 2018


Need something? Use our directory to connect with services that support parents, carers and people with disabilities and health impairments.

Enrich+

Enrich+ Spectrum Energy

Working with people with disabilities to have ‘a life like any other’ by focussing on skill development that enables a person to live their life, in the community of their choice. Transition from school services, coaching and mentoring services, support for living independently, 1:1 support and group activities available, as well as opportunities for work experience and support to find employment.

Supporting children, teenagers and adults with autism to further develop their social skills, communication skills and life skills through facilitated groups and 1:1 mentoring services. Supported living services also available, as well as support and training available to schools, workplaces, whānau and friends of those interacting with those on the autism spectrum.

Phone 07 871 6410 Email info@enrichplus.org.nz Website www.enrichplus.org.nz

Phone 07 871 6410 Email info@enrichplus.org.nz Website www.enrichplus.org.nz

NZ Foundation Conductive Education

Adaptive Technology Solutions

Conductive Education provides rehabilitation and education programmes for people from birth through to adulthood who have developmental delays or disabilities. Our teams of specialists based in our early childhood, school and adult centres focus on all areas - encouraging skill development towards independence. Call your local Conductive Education provider for more information.

Discover a whole new world of communication, have more confidence and be comfortable using your computer, lap top, tablet or smart phone. Trusted and experienced we provide a wide variety of flexible technology solutions for people who struggle to use their computer, read print or who may prefer dictating rather than typing by offering assessments, training and support!

Phone 0277169323 Email nzfce@cecanterbury.org Website www.conductive-education.org.nz

Phone 04 528 7600 Email genevieve@adaptivetech.co.nz Website www.adaptivetech.co.nz

Maximising the ability in disability

MAXIMISING THE ABILITY IN DISABILITY

Leading communication experts

Care Matters

Arthritis New Zealand

Care Matters runs nationwide workshops/learning opportunities tailored to the needs of your community, to enable carers access to knowledge, support and advocacy. It also provides a wealth of resources on its website. An 0800 number connects callers to its courses and directs carers to potential respite care..

Arthritis is not just about older people. If your child has been diagnosed with arthritis, contact us now for free information, advice and support.

Phone 0508 236 236 Email info@carematters.org.nz Website www.carematters.org.nz

Phone 0800 663 463 Email info@arthritis.org.nz Website www.arthritis.org.nz

Learning and Wellbeing

Improving the life of every person affected by arthritis

Find out more about our annual Children’s Camp.

Parent to Parent July 2018

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ON O R PA DE G R E 36

Peace of mind for parents Our new disposable ID wristbands offer immediate identification for lost children. Perfect when out and about or at an event for children inclined to wander. • Bright and bold for easy identification • Wear and dispose after use • Lightweight for those with sensory sensitivities • Tear-resistant • One size fits all

164497

If undeliverable please return to Parent to Parent, PO Box 234, Hamilton 3214