Parent to Parent December magazine 2016

December 2016

Photographic journey of discovery Challenging perceptions of Asperger's

Line of sight: poverty and disability

Living in the moment: one family’s story

And the winner is...

A big thank you to everyone who filled out our magazine survey — we received an incredible 351 responses and really appreciate your valuable feedback.

Congratulations to Jane Wilson (pictured) of Napier who won the $100 Prezzy Card for taking part in our survey!

Outstanding conclusions were: 75 per cent read the magazine online, 92 per cent say it is visually easy to read, 43 per cent feel inspired after reading it, with 26 per cent feeling understood. Fifty-three per cent share it with others, 26 per cent keep all issues, 98 per cent are satisifed with it being quarterly, 100 per cent say it reflects Parent to Parent’s integrity and professional reputation, 90 per cent read stories from other parents, over 50 per cent read all content, 68 per cent want more success/inspirational stories, while

0508 236 236 national@parent2parent.org.nz parenttoparent.org.nz @parent2parentnz @parent2parentNZ snapchat.com/add/p2p_nz instagram.com/parenttoparentnz Business development manager: Sue Pairaudeau Editor: Clare Chapman Graphic designer: Te Reo Hughes Cover image: Michael Smith 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.

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DECEMBER 2016

50 per cent want more health and wellbeing news and tips.

Feedback says we’re on the right track.

On the ‘room for improvement’ side, 10 per cent have never visited our website and 52 per cent are not connected with us on Facebook. Check out our website – it’s undergoing a transformation.

We are also committed to become considerably more culturally inclusive, with Treaty of Waitangi training to better implement this in the workplace, and we’re exploring how we can include Māori translations on our website, and include more diversity in our magazine and marketing material.

Welcome to our new team member

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lare Chapman joined Parent to Parent in September as the communications advisor. She’s based in the national office in Hamilton.

Clare’s background is in media and communications, having edited various magazines and worked for Fairfax, APN and Mediaworks as well as working as a freelance writer and editor for the past decade. As a single parent of two children, Emma, 6, and Toby, one, she is returning to work in a part-time capacity after taking a period of maternity leave.

Clare is enthusiastic about her role at Parent to Parent after a personal experience of disability when her son was diagnosed during pregnancy with a congenital anomaly. “I’m excited about embarking on this journey with Parent to Parent and helping to support families around the country.” Clare would love to hear from you, and if you have any stories or news you would like to share, please get in touch - clarec@parent2parent.org.nz

Contents

Keeping you in the loop

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arent to Parent has revamped this quarterly publication to give it a more contemporary look as it evolves from what was a newsletter into a crossdisability magazine.

This move coincides with the launch of our new logo, our website refresh and our nationwide publicity campaign. Have you seen our name on Shine TV’s news, or heard our adverts on Rhema? Maybe you’ve seen our adverts in daily and community newspapers? It will all come to a close over Christmas but resume in February so keep your ears and eyes peeled!

If you haven’t visited our website before, February 2017 would be the time to check us out and see what exciting fundraising events we’ve planned for next year.

On page 20 we discuss our new logo how it came to be, the process, and what it represents. We’d love to hear your views on our new logo - the feedback has all been positive so far.

We welcome letters to the editor and feedback, plus we’d love to share your stories, so feel free to contact us.

A big thank you to all our passionate volunteers around the country for giving their time and energy, and our sponsors, donors and funders for their kindess. Your generosity has enabled us to continue supporting families on their journey in the world of disability.

May your Christmas and New Year be all about family, friends and having a welldeserved break!

Sue Pairaudeau

In this issue

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Through the lens: a journey of discovery

6

Living in the moment

8

Challening perceptions of Asperger's

14

Latest news from across the sector

15

Public change spaces

20

Parent to Parent’s new logo

Parent to Parent wishes all our readers a safe, restful and joyfully memorable Christmas and New Year.

Business development manager Parent to Parent New Zealand www.parent2parent.org.nz

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Feature

Picture perfect For William Ives, who was disagnosed with ASD and anxiety when he was 11, leaving the safety of his bedroom and computer games was a difficult experience. Today, a newfound love of photography and a mentor in photographer Michael Smith is changing William’s perceptions.

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he transformation that has occurred for 12-year-old William this year has been somewhat remarkable.

In the last issue of this magazine, William’s mother Denise wrote a story about his developments, centred on his discovery of the game Pokemon GO, which encouraged him to start getting out and about and chatting to others who were playing the game.

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As part of the story, William met with photographer Michael Smith to have his photo taken, and William quickly became comfortable in Michael’s presence, expressing his desire to learn 4

DECEMBER 2016

This is the first regular activity William has managed to keep to. Even on his ‘bad’ days, he still gets out with Michael and always has a great time.

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about photography. Every week since then, Michael has taken William out for two hours and acts as a mentor, teaching him the basics of photography.

Michael, 21, has his own story.

When he first started school his parents knew something was troubling him.

“I was getting into quite a lot of trouble at school and they found out that I was dyslexic,” he says.

“I was taken out of school and home-schooled for five years before I went back to school for intermediate and then on to high school.” Michael says he always particularly enjoyed graphics, but it wasn’t until he finished school that he discovered photography.

“Photography and design are the only things I can pick up easily and remember. I’ve never been good academically.” Despite this, Michael is now studying design

and communication at Otago Polytech. He says he’s worked out ways to help himself get through assignments and the writing components of his studies.

“I use technology wherever I can. I can talk to my computer and tell it to write stuff down; I can ask Siri how to spell words, but even using these tools, things do take me a lot of time to get through. If I plan and start early enough, I do get things handed in on time,” he says.

At the moment, photography is something Michael does as an interest, but he’s making inroads into forging a career for himself as a photographer, having done assignments for various organisations and individuals whenever the opportunity arises.

“My real passion is landscape

photography. I love getting into the countryside and taking a photo.

It’s just enjoyable to get out and enjoy the environment and the satisfaction of getting a great shot.

I’m starting to get into portraiture now too.”

For Michael, the friendship that he developed with William has been incredibly positive.

“He’s coming out with me for a couple of hours every week. We normally just pick up a camera and head out and I try to teach him some new skills like how to use the manual mode on his camera.

"I find it really interesting because I haven’t taught anyone before so it’s just as much a learning process for me as it is for him. He seems to be really enjoying our time

together so it’s really good to help in this way.”

And for William, going out for lessons with Michael is a huge step forward. He’s happy to go outside and is enjoying learning new skills.

“This is the first regular activity William has managed to keep to.

Even on his ‘bad’ days, he still gets out with Michael and always has a great time,” Denise says.

“It’s great to see them both relaxed with each other and to see William able to learn from seeing Michael taking pictures. Michael quickly realised that William learns more from doing than listening and every week they go out and take pictures of all sorts of different things.”

Opposite page: William and Michael on a shoot. Image: Sheryl Davies.

This page: clockwise from top left: One of William’s photographs; Michael teaching William about beachscape shots, Image: Sheryl Davies; William and Michael out on one of their lessons. Image: Sheryl Davies; A shot by William.

www.parent2parent.org.nz

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My story

The power of positive thought Courtenay and Matetu Mihinui have faced more than their fair share of challenges. Here, the couple share their story and outlook on raising children with extraordinary needs. They aim to inspire others to navigate their journeys with positivity and hope.

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ourtenay Mihinui had her first daughter was she was 18. Demar Gear was born a healthy 4.5 kg and thrived for the first few months of her life. But at five months’ old the infant was diagnosed with pneumococcal meningitis, which left her with various physical disabilities and brain damage.

Courtenay, who at the time, had never heard of pneumococcal meningitis, noticed Demar seemed to have an earache and took her to the local GP who prescribed antibiotics to fight the presumed ear infection. Then a rash appeared on her abdomen and Demar was taken back to the doctor where Courtenay was told it was likely the rash was a side effect

of the antibiotics. But when Demar woke the next morning, her eyes were crossed in a fixed stare and she was rushed to Whakatane Hospital before being flown to Starship. She survived but was left with severe brain damage, cerebral palsy, epilepsy, hydrocephalus and spastic quadriplegia. It was the start of a lifelong journey for Courtenay and her daughter.

Courtenay, now 38, has dedicated her life to caring for Demar, who requires around-the-clock care.

“Initially when Demar got sick, I couldn’t understand why this had happened to us and I often thought ‘Why me?’. I was so young at the time and it was overwhelming,” she says.

“After a couple of years of grief, I guess it was, I was able to change my mindset and think ‘Well, why not us?

Why not her?'. It sounds like a strange way to think but I realised that I am truly grateful for what we do have, and that she is still here and I am able to care for her.”

Courtenay’s journey caring for Demar didn’t end there though. She has since met her husband Matetu Mihinui and the pair has created a loving blended family. Together, they have six children between them, including the pair’s son together, Tahumatua.

While they don’t have four of the children living with them, they are able to organise regular visits and plan to be able to enjoy their special times together as a family.

“We get so much great support from my mum who moved cities to be close to us and with her help, when we have our other children here, we make them our priority. It’s really important to us that we are able to do that and that our children know that their needs, although different and not as demanding of our time as Demar and Tahumatua’s, are just as important.

With help, we are able to plan this time with our children carefully and ensure we can enjoy our time together.”

When Tahumatua, now aged six, was three, he was diagnosed with Autism Spectrum Disorder and Courtenay and Matetu say they couldn’t help but think again, why us?

“But now I realise I was chosen for these babies and maybe I need them and they certainly need me,” Courtenay says.

Matetu says Tahumatua is thriving, despite his diagnosis, and is loving swimming and going to trampoline facility Flip Out. He has been working

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Tahumatua, Courtenay and Matetu remain positive and see the opportunity and good in everything. “We are a relatively young Maori family and we have become integrated in a world where things are not always comfortable. But we’ve realised that the only limitations we have are our own walls that we put up. There is no reason why you can’t find support and friendship and see the positive in life.

For us, that has been very successful.”

The family have strong links in their local community and are involved with Matetu’s marae in Rotorua. At the moment, Matetu takes Demar to listen to the kapahaka group at the marae or other facility where it is held each weekend as she enjoys the music.

Courtenay is involved in Parent to Parent’s local coffee groups and events in the Bay of Plenty, which she finds particularly valuable, especially being able to share our experiences and hopefully help others in the process.

Opposite page: Courtenay and Matetu Mihinui with their children Demar and Tahumatua. Above: The family at home in Rotorua. Right: Courtenay and son Tahumatua. Images: Breanna Turner.

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I believe that our lives are greater and more fulfilled for having two children with extraordinary needs.

with a speech and language therapist for some time now and his language is developing well.

“While he struggles in some social situations, given sufficient support, he can enjoy most family outings and enjoys a close bond with all his siblings,” Matetu says.

For Courtenay and Matetu, they say: “It really is about mindset. We don’t have a lot but we really do feel like we are rich with our family and our health.

For our family, it has been about changing our mindset from focusing on what we haven’t got, or what we can’t do, but appreciating what we do have and what we can do.”

The couple admit their family is different from many others, and there are many restrictions around what the family can do but, as they say, it is just another way of life. It hasn’t always been a smooth road for the family;

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they have faced more than their fair share of challenges.

When Demar was 11, she needed surgery to have steel rods inserted into her spine to straighten its 90-degree bend that was crushing her organs against her ribcage. It was an incredibly traumatic time for the family, with the low chances of survival given, leading Courtenay to plan her baby’s funeral, bringing the clothes to Auckland that she would be buried in. Demar was given a 20 per cent chance of survival but beat the odds and the operation was successful.

Next year, Demar will complete her final year of school and Courtenay and Matetu are exploring what else is available for her that can cope with her physical needs.

Despite the constant health issues and the challenges of dealing with the different needs of Demar and

To other parents who have children with disabilities, Courtenay says this: “Never lose hope, because without it, the world is pretty grim. I’m not talking about being so naïve that I’m saying that the world is always great, but I am saying that in our house, it’s usually pretty good and that’s as a result of our mind sets and outlook on life. I believe that our lives are greater and more fulfilled for having two children with extraordinary needs. We’ve met a lot of people who consider having a disability a burden, and we enjoy sharing some of our family stories to show that that’s not always the case.” www.parent2parent.org.nz

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Feature

Always smiling Invercargill high school student Bethany Hughes shares her story of growing up with Asperger's syndrome, raising awareness about the condition, and breaking down barriers to ensure people focus on ability rather than difference. Bethany recently featured in a short film about the condition.

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ifteen-year-old Southlander Bethany Hughes has debuted in her first short film, and she’s exceptionally proud of what she’s achieved in raising awareness and acceptance of Asperger's syndrome.

Bethany was diagnosed with Asperger's at the age of five. Now, a decade on, she’s thriving in every way, and is an inspiration to those around her and the global Asperger's community.

As Bethany describes it, she wasn’t planning to feature in a short film, but a Year 8 boy at her school approached her and asked her if she wanted to. “I didn’t know who he was, but that happens to me quite often. People come up to me and say hi but I have no idea who they are; I just don’t remember people sometimes,” she says.

The film, entitled Always Smiling, was entered in the 2016 Focus on Ability Short Film Competition, an event developed to raise awareness of the abilities of people with a disability, with a global audience of more than one million viewers each year.

Bethany doesn’t know how the film did in the competition ­– she hasn’t logged onto the website to see – but she does know that it made her feel good being a part of raising awareness about Asperger's on a global stage.

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“It helped me because it made me feel appreciated,” she says. “I like the feeling of being recognised for my good abilities rather than being dismissed as weird or different.

Doing the filming was quite a lot of hard work to be honest. It took several weeks to get completed and I was agitated about it because it was the first time I had featured in a film.”

While Bethany was diagnosed with Asperger's at five years old, she didn’t know anything about the condition until age ten when she was given the book All Cats Have Aspergers to help her understand the condition. “I’m 15 now and I’m glad I’ve had the chance to understand Aspergers.

"Knowing about it gives me a lot more understanding, especially about my social skills.”

Bethany says she has had many troublesome experiences throughout her school life, struggling to fit in with different groups, and, at times, not really talking to other children for long periods of time.

“But understanding it now gives me empowerment,” she says. “I have some fairly obscure interests and most people would not really understand what I was going on about if I talked about them, but I don’t give up on my interests to fit in with groups or simply to be accepted. That might sound selfish, but sometimes selfish is good.”

When asked about her interests, Bethany says she has a clear set of defined interests, but needed a moment to go and get a mind map explaining them she had made it the weekend before we spoke so she could articulate them clearly.

“I’m really interested in anything in a broad sense that is scaly or feathered. Since I was 10, I’ve had a passion for dragons: art, video games, books, anything about dragons. Before that, when I was eight, I loved birds. I also love dinosaurs. I’ve been called a ‘greenie’ by my dad, but I often do feel more for environmental or animal issues than I do for issues of humanity.”

For Bethany, the future is exciting.

She’s not sure yet what she wants to do when she leaves school in two years, but she’s got some interesting ideas.

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“I feel naturally inclined towards writing. I love writing about fictional worlds,” she says. “I’m also considering being an artist or someone who works with nature.”

For now though, apart from her desire to educate people about Asperger's and encourage others to celebrate and appreciate people with Asperger's and respect their unique abilities, Bethany is content in her studies. She’s making a short film for English about dinosaurs.

Always Smiling can be viewed online at focusonability.com.au

I have some fairly obscure interests ... but I don’t give up on my interests to fit in with groups or simply to be accepted. That might sound selfish, but sometimes, selfish is good.

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The annual Focus on Ability Short Film Festival is run by Australian company NOVA Employment and is open to international entries. The competition asks entrants to focus on the abilities of people with disabilities. The competition is now in its eighth year. focusonability.com.au

www.parent2parent.org.nz

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Column

Christmas, our way Rebekah Corlett lives on the Kapiti Coast with her husband Jason and their two children. Their eldest, Sophie, is non-verbal and has Autism Spectrum Disorder. Here, Rebekah shares her thoughts on creating a magical Christmas, but one that works for her family.

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very Boxing Day I promise myself that next Christmas will be different – no stress, no grand plans, just relaxed family time. Three-hundred-and-sixtyfour days later, I am once again the worst, most stressed out, exhausted version of myself. Most Christmas nights I end up stuffing my face with the left-over Cherry Ripe minis (no one else eats them) before whimpering “never again”.

It all starts in mid-October, as the shops start filling with tinsel and the Destiny’s Child Christmas album is played on repeat in all the malls.

That’s when I start scrolling through Pinterest for exciting things to do and eat on the big day. I watch Nigella Lawson on television festively stuffing her turkey and making condiments from scratch. I yearn for a picture perfect Christmas Day like Nigella’s that my family will enjoy.

I think it’s because I’m looking for a brief break from the norm. Our household exists on a very rigid routine to suit my daughter’s need for predictability so Christmas seems like a good excuse to change things for the day.

It’s also a creative outlet for me to channel my energy, rather than

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“

Sophia is eight ... she does not talk and has sensory issues with sound and space. Why then, do I insist on taking her to a crowded mall to have a photo with Santa?

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towards the next IEP, therapy session or doctor's appointment.

Don’t get me wrong, I love my family and the unpredictable, unrelenting craziness that we create together.

And for 11 out of 12 months of the year, I embrace this wholeheartedly.But there’s just something about Christmas that turns me into ‘Yulezilla'.

My lovely Sophia is eight, and has Autism Spectrum Disorder. She does not talk and has sensory issues with sound and space. Why then, do I insist on taking her to a crowded mall to have a photo with Santa?

She hates the unknown, which contra­sts quite awfully with my insistence that she comes to Christmas parties full of people she doesn’t know.

She doesn’t enjoy sitting for long periods of time, even to open presents, yet I endure, trying to get her to open presents from people in front of them, so as not to insult them, when I know she would prefer to hide under the food table watching YouTube on her iPad. The sensory fallout from Christmas can last days, usually well into the New Year, which means plenty of

challenging behaviours and no chance of a silent night for our family.

Us parents are a resilient lot, and I am determined that Christmas 2016 is going to be different. This year, instead of doing what we usually do and travelling to multiple family gatherings on Christmas Day, we will be staying at home, just the four of us.

Lunch will have all the trimmings but I will be consulting my family members about what they want to eat, not Nigella, and not Pinterest. If that turns out to be turkey, great! If it’s chicken nuggets, even better! Visitors will be very welcome, but only if they fit in with our routine. This year, it’s Christmas on our terms, not anyone else’s.

Here’s hoping this Christmas night, I’m happy, relaxed and able to enjoy my annual Cherry Ripe binge care and whimper-free!

www.parent2parent.org.nz

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Column

Accessibility champion Kristy Robinson is based in Whakatāne. She works in design and media and is a contemporary artist. She’s also a musician, writer, environmental and social justice advocate and mum to 14-yearold Eli. Here, Kristy talks to Poihaere Morris, an accessibility advocate who has represented New Zealand internationally in the disability sector.

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oihaere Morris has opened my eyes to many things over the course of our decade-long friendship. Every time I see her she has something new to share with me – she’s passionate about many things, and her work within the disability sector inspires me greatly.

When I asked Poihaere if she would be interested in being interviewed for this article, she agreed to meet with me at a monthly support group meeting of Manawanui In Charge clients – an attempt perhaps by Poihaere, who is undeniably modest about the importance of her work, to

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avoid the spotlight and shine a light on the group. Manawanui in Charge supports people with disabilities around individualised funding, giving people the autonomy to choose their own support providers. They also offer enhanced individualised funding, which takes care of the behind-the-scenes administrative work. Poihaere enlists the services of the organisation, and is an integral part of the unique support group.

Poihaere had a stroke several years back, which resulted in left- side paralysis. Whilst she has regained the ability to walk

shorter distances, she still makes good use of a scooter to maintain her independent mobility. She is not afraid of challenging people’s accepted norms, and sharing new perspectives. Recently, she told me about some of the accessibility issues around Whakatāne that are no doubt reflected nationwide. She, like other New Zealanders who pay for permits to use accessible carparks, find it immensely frustrating to pull up to one - only to find it occupied by someone who was simply ‘in a hurry’ or too lazy to park further from the door. I am sure those people think ‘I’m only

going to be a second’, but every second counts in the life of a person with a disability. It’s quite common for people with permits to have to drive around for 20 minutes until a suitable park becomes free.

Poihaere has been speaking with various local community stakeholders about accessibility – not just in a physical sense, but also about the invisible barriers that people with disabilities are faced with daily.

She told me about a recent change to the Building Code, which means that every new building and alteration to existing buildings, must be built to be accessible. It can be difficult to interpret what it means to be accessible unless you have had limits to your mobility, so she has made herself available to speak with architects, builders, building owners, councils and Marae, about how accessibility issues can be successfully addressed at the design stage.

The United Nations Convention on the Rights of Persons with Disabilities is not something I knew existed until Poihaere told me about her work on the convention as a monitor, ensuring New Zealand has been meeting it’s needs under the convention. It was ratified by New Zealand in 2008, and New Zealand acceded to the Optional Protocol to the Convention in September 2016.

This enables individuals or groups who claim to have had their rights breached under the Convention, to make a complaint to the United Nations Committee on the Rights of Persons with Disabilities.

The Convention itself makes it explicit that all member states must ensure the full realisation of all human rights and fundamental freedoms for people with disabilities on an equal basis with others, and without discrimination of any kind.

In a perfect world, wouldn’t it be great if we didn’t need conventions and monitors to address the needs and situations of people with

disabilities - and instead, an equitable society was the norm?

Perhaps this is achievable. Let’s be brave like Poihaere and be unafraid to speak up when there is an opportunity for positive change.

Opposite page: Poihaere Morris at Mataatua Wharenui; Above: Morris at Whakatāne Heads; Below: Morris at home in her garden. Images: Kristy Robinson

www.parent2parent.org.nz

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News

A Touchless smart phone app

new touchless smartphone controlled by head movements is now available. Known as the Sesame Phone, the technology utilises the phone’s front-facing camera to track users’ head movements using advanced algorithms which are then translated to control an on-screen mouse cursor through which the user can operate any app. Sesame also has an app available for Android 7 devices that is free to download, or the Sesame phone can be purchased directly from Sesame-Enable.

Currently, the app is just available for Android devices. More information a available at sesameenable.com

New international protection for New Zealanders with disabilities

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n October, New Zealand’s accession to the Optional Protocol to the Convention of the Rights of Persons with Disabilities was signed, which will strengthen the rights of people with disabilities in New Zealand, the Human Rights Commission said.

“This is a significant development for almost one in four New Zealanders. Disabled New Zealanders who claim their rights have been breached under the Convention on the Rights of Persons with Disabilities and who have exhausted domestic remedies will soon be able to make a complaint to the United Nations Committee on the Rights of Persons with Disabilities,” Disability Rights Commissioner Paul Gibson said.

The Optional Protocol to the Convention enables the 14

DECEMBER 2016

Committee to examine individuals' complaints against member states.

The protocol was adopted by the United Nations 10 years ago.

“We would like to acknowledge many New Zealanders from the disability community as well as Government who have helped with the creation of the Convention and the protocol,” Gibson said.

While there are many ways to resolve complaints domestically, this development offers a further solution to enhance the international human rights protections available to New Zealanders.

The Optional Protocol came into force in New Zealand on 20 October 2016.

More information about the protocol is available at www.ohchr.org

Lobbying for change The lack of accessible change places in public areas is unacceptable and has a daily impact on those who require them, according to campaigners who are calling for changes to legislation around disabled toilets in New Zealand

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campaign has been launched calling for accessible change places across New Zealand. Accessible Change Places spokesperson Saffron Mitchell of Community Living, says it is inexplicable that there are no facilities for people who have additional changing needs.

blocks, in shopping centres, and in other public facilities and buildings.

Mitchell and campaign co-founder Kim Simpson, also of Community Living, have worked alongside fellow advocate and champion Bernadette Stewart who was born with a disability and has limited movement.

“The lack of available facilities – there are none currently in New Zealand that we are aware of – means that members of our communities are unable to stay out or away from their homes for extended periods of time,” Mitchell says. “For people who are able to use standard toilet facilities, it’s something we don’t even think about. Everyone in our community deserves the right and the dignity to be able to utilise a facility in which they can be changed.

Bernadette says: “For people with a significant disability, if there were accessible change places available, it would mean people wouldn’t have to stay in incontinence products all day and could stay out longer with family and friends.”

”The campaign aims to have accessible change places created in public spaces around New Zealand, including in public toilet

People with significant disabilities are constantly confronted by isolation due to not having adequate facilities that meet their needs. In desperation, some families resort to changing their loved ones on the floor of public toilets, which is unhygienic, undignified and unsafe.

The alternative is to sit in soiled clothing until they get home, Mitchell says. For Bernadette, the current

lack of accessible change places hasn’t stopped her from going out, it has meant that she has to use her incontinence products and if there is nowhere she can be changed, she is in them for the entire time she is out. This campaign is about making people aware of the issue and making people accountable so disabled toilets can be accessed and used by everyone.”

One of the aims is to have the Building Code revised to ensure disabled toilets are accessible for all.For us, this project is about ensuring we have a community that is innovative, supportive and sustainable for everyone,” Mitchell says. Inclusive communities mean people having all their basic needs met. It is not somebody else’s problem, it is ours collectively. This is something that could affect any one one of us or someone. facebook.com/accessiblechangeplaces

News

Call for greater accountability around informal removal of students

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ore children are being removed from schools inconsistently with the provision of the Education Act, according to a report released in October by YouthLaw. Those children who have special needs are disproportionately affected by informal removals and the report highlights a need for better protection for these students.

The report’s author and senior YouthLaw solicitor Jennifer Walsh said YouthLaw had seen an increase in the number of children and young people over the past three years seeking legal advice when they had faced an informal removal. “Although many schools are engaging in best practice procedures, the current regulatory frameworks permit variable and inconsistent approaches to school discipline from school to school,” Ms Walsh said.

“Our research indicates that students with special educational needs are disproportionately affected by informal removals not authorised by the Education Act. We consider there is a need to ensure adequate protection of students with such vulnerabilities so that they are not at risk of

discrimination. Special needs students are entitled to reasonable accommodation enabling them to access an education of an equaland comparable level to their peers without special needs,” she said.

“

Vulnerable students such as those with special educational needs are particularly susceptiable to informal removals...

“Vulnerable students such as those with special educational needs are particularly susceptible to informal removals. It is vital that consideration is given to measures which can provide better protection of those students to access education.”

The report incorporated anonymised of stories from families affected by informal removals. In the case of a 13-year-old boy from West Auckland, Walsh said the boy was diagnosed with ADHD and had been acting out at school.

“Following discussions with school management, the boy’s parents felt they had no choice but to agree to the school’s suggestion that the boy only attend part days and part weeks at school … the boy’s defiant behaviour continued and escalated

Drop, cover and hold

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n the event of an earthquake or other natural disaster, it is important for those who have, or have a family member with, a disability to ensure an appropriate plan is in place. Civil Defence advises the creation of a personal support network of a minimum of three people to alert a person with a disability of civil defence

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due to lack of support.” In the case of this boy, his parents were eventually advised that their son stay away from school for a while and perhaps when his behaviour was more manageable he may be

warnings, or to help if the need to be evacuated arises. Civil Defence also recommends having an emergency supply of survival items, keeping at least seven days’ supply of any essential medications and knowing where to go, or how to ask, for assistance. In the event of an earthquake, Civil Defence recommends those who are unable

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able to return or transition to alternative education. The boy was then out of school for almost a year before his parents sought legal advice. The report highlights many stories of those who have been involved with informal removals.

“Owing to significant discretion given to principals and school boards under the Education Act, decisions to remove students are, to a great extent, unchecked.

This lends to risks and removals of students can be at times on erroneous or mistaken grounds with little ability to challenge the removal. Main deficits in the current system include lack of awareness, gaps in accountability and lack of meaningful sanction”.

The full report is available at youthlaw.co.nz

to take cover under a table, to move near an inside wall away from windows and items that could fall, and if in a wheelchair to lock the wheels' stopping movement.

More information, including the Drop, Cover and Hold Information Sheet for people with disabilities, is available at getthru.govt.nz

Profile

like attending the Canterbury UPP Club, New Zealand Down Syndrome Association/STRIVE workshops, Special Olympics, Canterbury Down Syndrome Association and going to my work for Parent to Parent Greater Canterbury in the Christchurch region.

1 1 / 5 1 IC IN

What are your goals for 2017?

A: Some goals for me will be learning new skills for Parent to Parent and thinking of new ideas to promote World Down Syndrome Day for the Canterbury Down Syndrome Association and events for Parent to Parent.

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Favourite book or movie?

Andrew Oswin Andrew , 27, has Down’s Syndrome. He helps Parent to Parent Canterbury’s regional coordinator Laura Lightfoot two days each week with the assistance of a Workbridge job coach.

How long have you worked for Parent to Parent?

What is the most challenging thing about your role?

Andrew: I’ve been working in this job for one year now.

A: Learning new tasks. I have set up a task checklist to help me and I have a daily planner to write my work on. Getting to work is a challenge for me especially after the earthquakes and all the construction work.

What do you enjoy most about your job?

A: Sending out flyers to schools, kindergartens, medical centres, libraries and other organisations in the region.

What are your hours each week?

A: I work two days’ a week for Parent to Parent.

What do you like to do in your spare time?

A: I really enjoy and love going to ten pin bowling and going out for lunch with my friends, having a look around the markets, going to the movies and playing the piano. I also

A: My favourite book I have been reading at the moment is The Lost Stories from The Ranger’s Apprentice series by John Flanagan and my favourite movie is Harry Potter and the Philosopher’s Stone.

What’s your favourite food?

A: Sweet-chilli chicken, homemade pizza with potato wedges, potato pom poms, potato-top pies, chocolate and Thai food. I also enjoy it when Laura and I go out for lunch to Subway.

Andrew started with Parent to Parent as a volunteer and has done incredibly well in his role, moving on to become a part-time employee. His position is supported

by Workbridge which provides a job coach and job support. Currently, his role is funded by Sargood Bequest and The Welfare Rehabilitation Trust. www.workbridgeincorporated. virtuozzo.co.nz

www.parent2parent.org.nz

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Global links

Line of sight Fiona Morris of international aid agency cbm, which works with families who have the double disadvantage of living with diability and in poverty, tells the story of Blessing, a young boy from Uganda who was unnecessarily blind, a situation cbm comes across frequently in their work.

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lessing was born in a small village 40 minutes outside of Kampala , Uganda with bi-lateral cataracts.

His father died and his mother left him, unable to cope with having a child who couldn’t see. He was left in the care of his elderly grandmother, and by the time he

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DECEMBER 2016

reached school age, his struggles were diversifying. He was wakling to school, often turning up injured as he was unable to safely make his way there due his lack of sight.

When an aid worker from cbm found Blessing, he was isolated at school, unable to play with other children, and wasn’t keeping up with his

schoolwork because he couldn’t see the blackboard or write.

“We met Blessing when he was six,” cbm spokesperson Fiona Morris says. “His grandmother was struggling to help him, unaware that help was available and that he could have an operation to correct his sight.” Her wish was that Blessing

could see like all the other children, properly learn at school, and grow up to be independent.

This is common in many of the countries in which CBM works with families who have the double disadvantage of disability and

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travel to the hospital to undergo the surgery he required.

“It’s also often hard for us to convince the children and their families that the operations or help they need is there, and is safe,” Morris says. “Often when people do

When he woke, he opened his eyes and just had a huge smile on his face. He went over to the mirror and could see himself properly for the first time.

”

poverty. “It’s often really hard for us to find these children who need help because a lot of the families believe that having a child with a disability is a curse from God that happened because they have done something wrong,” Ms Morris says. cbm’s field worker in Uganda happened to visit Blessing’s school and had built some trust within the local community. This meant she was able to persuade Blessing to

In adults, cataract surgery is done under local anaesethic generally, but because of the risk of movement, children are operated on under general anaesthetic. In Blessing’s case, he underwent a 40-minute surgery.

“When he woke he opened his eyes and just had a huge smile on his face,” Morris says. “He went over to the mirror and could see himself properly for the first time.”

travel to hospital from these poor communities, they do so at a late stage and many do pass away, so it is a big step for someone to decide to go to hospital for any sort of surgery.”

In this case, Morris says, Blessing was lucky. He was found, treated and now thrives at school and at home. “One of our huge concerns is that a lot of families don’t realise help is available so they don’t go to hospital at all or they go to a local hospital that doesn’t have adequate resources or staff to help.

In Blessing’s case though, he travelled to hospital in Kampala with his Aunt Stella, who provided the nursing care he needed following surgery; nurses are often unavailable so children must be accompanied by an adult who can nurse them, Morris says.

"There are so many kids that are unnecessarily blind because of this.

The other difficulty we face when trying to help, is to find the children who need assistance. Hospitals are usually in cities but most of the people we treat are often in remote villages.” cbm is an international Christian development charity that works with those living with the double disadvantage of living in poverty and with a disability. In 2015, it provided medical services for more than 10 million people in 63 countries.

www.parent2parent.org.nz

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Feature

diverse

Face of the future As we move into 2017 and Parent to Parent steps into the next phase of its journey, business development manager Sue Pairaudeau explains the meaning behind the recently-launched logo and revamped magazine.

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arent to Parent first began 33 years ago, and has grown and developed into a nationwide service.

Today, the organisation continues to grow and diversify and each year reaches more and more families, supporting them through their journey with disability.

Every year, Parent to Parent provides around 4,000 tailormade information packs to more than 1,500 New Zealand families with information on over 3,600 conditions.

Parent to Parent also runs a support service for parents with a nationwide network of more than 650 trained volunteer ‘support parents’ who provide local support

to families dealing with a new diagnosis or who are moving through a new stage in their journey.

We are a truly family-orientated organisation, offering a range of unique services and support across the country.

In order to better express our core values, the board decided to investigate a new-look logo, which was launched in October 2016.

We are exceptionally proud of the new logo, which was designed by David Creighton-Pester of Scorch Design.

It was a process that we embarked upon wholeheartedly, running nationwide focus groups with the help of Versus Research. The feedback received helped to form

the final brief for the new logo.

We wanted a circular shape that suggested messages aligned with Parent to Parent’s core values, including a circle of care, the diverse nature of Kiwi families, connecting people and networks, and inclusivity of all disabilities, ethnicties, ages and gender.

What resulted is a logo that visually creates our tagline, to ‘connect, inform and support’. This powerful triumvirate suggests three stylised people connecting in a circular arrangement with shared pathways between them. The warm colours of aubergine, tangerine and mango suggest the different ages, locations, genders and ethnicities of the Parent to Parent families and wider community.

...changing faces 1980s

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DECEMBER 2016

1990s

2016

advocacy

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hā n a u

shared pathways

in c l u siv

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connect inform support

connecting parents

Aubergine pizza

Recipe

In the spirit of embracing the essence of our new logo and a bit of seasonal cooking, this aubergine recipe – the first in a series of recipes based on the colours of our logo, aubergine, tangerine and mango – makes a great, quick and easy family meal. Contributed by Sue Pairaudeau, it has been a favourite for her and her family.

In-season eating promotes a fresh and varied diet. Aubergine is in season in New Zealand in the spring and summer months, and is actually a fruit, containing lots of fine seeds. Aubergine is a great source of fibre and also contains vitamin B, vitamin K, potassium and folate.

Silky and delicious, an aubergine half is surprisingly filling. This is our family’s basic recipe, but it is versatile – you can use whatever you have in the fridge for toppings … salami, crispy bacon, mushrooms, fresh basil, the options are endless.

Prep time: 15 minutes | Cook time: 25 minutes

INGREDIENTS

METHOD

1 x Aubergine

1) Preheat oven to 180 degrees celcius

5) Spread tomato paste over each aubergine half

2) Chop stalk end off aubergine and cut in half lengthways

6) Add toppings: olives, chopped garlic and feta. Add any other toppings you desire.

Olive oil Coconut oil 1 x small container of thick tomato paste 6-8 x Black olives (Kalamata are perfect) 5 x Garlic cloves 100 grams Feta cheese (Waimata traditional cuts easily without crumbling)

3) Drizzle coconut (or olive oil depending on your preference) in oven dish 4) Place aubergine halves in oven dish, flat-side up. Brush with olive oil, which will soak in immediately.

7) Place in oven and bake for 25 minutes.

8) Remove from oven and let stand for ten minutes before serving.

9) Enjoy! www.parent2parent.org.nz

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Books

Telling our stories Trish Harris recently released her first book ‘The Walking Stick Tree’, a memoir about growing up with acute arthritis — about pain and loss, identity and living creatively. Here, the author explains the importance of having a diversity of books available for, and by, those in the disability sector.

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have just published a memoir about growing up with acute arthritis. I wanted to tell my personal story, but I also felt it fitted into a wider context.

The Walking Stick Tree begins with my first memory of arthritis as a sixyear-old, and moves through the disease’s increasing impact on my life as I became a teenager and adult. It also includes four personal essays that look at themes emerging from the core story. They explore pain, loss, identity and spirituality and quote from writers who have challenged or affirmed my experience in those areas.

As well, there are four blocks of line drawing illustrations. You don’t always need words to tell a story!

Stories can change perceptions, and perceptions impact on policies — policies that lead to decisions that not only reflect our world, but create a better one. That’s the power of story.

Trish Harris has worked with words over the past 30 years – writing, editing, creating and tutoring. She has a Bachelor of Applied Arts (Creative Writing) from Whitireia New Zealand.

She was recently on a panel at

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Our stories are messy and humorous, ordinary and nuanced. They need to be written from the fire within our own bellies and appear in non-fiction and fiction. As well as entertaining us, stories help us practise who we are and who we might become. They reflect ourselves back to ourselves, and in so doing help us claim our existence. And, they open a door Trish Harris; Image supplied. for others to understand our lives.

DECEMBER 2016

Trish’s memoir, The Walking Stick Tree, is available from all good bookstores or through the Escalator Press website.

Finding a quality New Zealand book on the experience of disability is like finding water in a desert: eagerly consumed and leaving me wanting more - Robyn Hunt

In The Storytelling Animal – how stories make us human, Jonathan Gottschall talks about the pervasiveness of story and its power. He says stories occur in all sorts of places: in novels, in movies, in non-fiction, on TV, in advertising and on the news.

So often however, I believe the disability story is missing from those places. Or if it is included, our experiences are depicted narrowly, only in terms of tragedy or inspiration.

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Wellington’s LitCrawl Weekend, with the title ‘Crip the Lit’: When disabled writers claim their voice and share their inner world, the parameters of what it means to be human broaden.

The other panel members were Sally Champion, Mary O’Hagan and Robyn Hunt.

”

Help us to help you Each year, we connect hundreds of families with one of our trained support parents, create more than 3,000 information packs tailor-made for each family’s unique situation, run camps for siblings, coffee groups, activities and family events, and hold specialised workshops and training events.

To enable us to continue to help families like yours, we rely on donations to fund our services.

As we enter a growth phase, we are committed to continually improving and making our essential services as accessible as possible, reaching all New Zealand families who need our services.

You can support us by setting up a regular donation, offering a one-off donation, or by donating using the payroll giving scheme. Visit our website to find out more parent2parent.org.nz

Advertise in this magazine!

Reach 1000s of New Zealand parents - Parent to Parent members and volunteers nationwide - Government ministries - Child, health and disability organisations - Mayors and city councillors - Health professionals and services - Early childhood centres - Schools

Links to e-editions are distributed via our 11 regional offices through their Facebook and e-newsletter networks, plus overseas to child disability networks and advocates.

E-editions and back editions are accessed via www.parent2parent.org.nz Parent to Parent’s quarterly magazine is distributed in March, June, September and December.

For advertising, contact Sue Pairaudeau 0508 236 236 or email suep@parent2parent.org.nz www.parent2parent.org.nz

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Parent to Parent Contact us

Connect with another parent

0508 236 236

Access individualised information

parent2parent.org.nz

Boost siblings' connections Join a coffee group Become a friend of Parent to Parent

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Lifelong support for Kiwi families raising a child with a disability

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Increase your knowledge at: Renew, a workshop for parents new to the world of disability.

Support Parent Training, a course to become a trained volunteer to offer support to other parents who have a child with the same or similar disability to yours.

Individual Education Plan, a seminar to help parents ensure their child receives everything they are entitled to at school.

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

164497

164497