Parent to Parent July Magazine 2017 by Parent to Parent NZ

New Zealand disability magazine

JULY 2017

Dining in the dark P2

Giant leap in astronaut suit P22

Celebrity Art Auction SUCCESS P26

or f r e n n Win di the dark two in VER K CO S BAC IL SEE R DETA FO

Kiwi teens create autism-inspired tote Art Green and Matilda Rice have theirs P12

Kia ora readers...

Here we are over half way through 2017 – a significant year for New Zealand with a general election just two months away on Saturday September 23. It’s important the voices of people with all disabilities and their families/whānau are heard in this election, so check out our election feature and opinion pages to help start those conversations with your local MPs. It’s also time for Parent to Parent members to vote, and you’ll receive your invitation to our AGM and call for Board nominations with this magazine. Thank you to the thousands of people who followed our annual Celebrity Art Auction on Trade Me in May. Our generous celebrities’ creativity will be a tough act to follow in next year’s event. But in the meantime, art-lovers don’t have to wait that long! A number of professional Kiwi artists contacted us to donate works for an artists’ auction, so we’ll have all the details of that fundraiser in our September magazine. Until then, stay warm and well, and enjoy reading your magazine! - Sue Pairaudeau, Editor

TIME TO VOTE Parent to Parent NZ invites members to its 2017 AGM

Order your NEW 2017/2018 Entertainment Book or Digital Membership and support Parent to Parent.

- Sunday October 15 - Distinction Hamilton Hotel and Conference Centre

You’ll receive hundreds of valuable offers for everything you love to do in your region.

- 100 Garnett Ave, Te Rapa, Hamilton Light lunch 12.30pm followed by AGM 1.30pm For more information or to become a member, contact Izel Becker 0508 236 236 or izelb@parent2parent.org.nz

Editor: Sue Pairaudeau Graphic design: Steven Mahoney Cover image: Supplied

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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.

Cover

CONTENTS

Dining in the dark

A world of animation

Disability and whÄ nau hauaa

Same emotions, different expressions

Your voice, your vote

Medicinal cannabis

Giant leap in astronaut suit

Celebrity Art Auction success

Incredible Joy

New life with new legs

Enabling Good Lives

Inclusive communities through education

Remembering Alexia Pickering

hono korerotia tautoko

Connecting, informing and supporting family and whÄ nau of Kiwis living with disabilities.

DANS LE NOIR?

MORE THAN A DARK EXPERIENCE

French for ‘in the dark?’

By SUE PAIRAUDEAU

magine a restaurant where no one can see their plates, glasses, waiting staff or other patrons. You wouldn’t know what you were eating, who you were talking to – and Dans le Noir? patrons say it’s an incredible experience. Dining in complete darkness guided by visually impaired or blind staff is raising awareness, breaking barriers, enhancing creativity and gathering strangers together in a way that replaces all visual social cues with the highly sensory – taste, smell, touch and hearing. Darkness leaves us without reference, faced with a new truth: if blind people are without vision, we are to some extent disabled by it when taste is influenced by appearance. Dans le Noir? offers a semi-gastronomical, modern, international cuisine with fresh, natural and (when possible) organic and fair trade products to extract maximum flavours. The restaurant requires a more secure space and a bigger staff than any ordinary restaurant (for logistics and safety).

looking for a good fit. He finally met blind foundations in France, Germany and Switzerland organising dinners in the dark to raise disability awareness. The concept was originally developed in 1997 by Michel Reilhac in cooperation with Paul Guinot, a major French blind foundation. Edouard saw it as a business useful for people, and proposed Paul Guinot foundation set up a model for a profitable company employing a high percentage of visually impaired people. A few months later the first permanent restaurant opened in Paris, and eventually established in London, Barcelona, St Petersburg, Auckland and Madrid, with pop-up restaurants in cities like New York, Bangkok, Riyadh, Nairobi, Geneva and Warsaw. Dans le Noir? also expanded past restaurants to spas, blind sensory tasting, blind tasting awards and social clubs. www.auckland.danslenoir.com

HISTORY Ethik Investment Group was founded in 2003 by Edouard de Broglie. As a successful entrepreneur, he decided to reinvest profits and met many foundations across Europe

Win dinner for 2 at dans le noir? SEE BACK COVER FOR DETAILS

Edouard de Broglie CHAIRMAN ETHIK INVESTMENT GROUP AND FOUNDER OF DANS LE NOIR?

“Even if New Zealand is very far from France, it is not a very different country culturally speaking! French and Kiwis share a lot of common interests such as wine, sailing and playing rugby … This was one of my old dreams: bringing pitch darkness to the All Blacks! In fact we are very proud to open the first restaurant in South Pacific with Rydges Auckland. Dans le Noir? is a fantastic environment to socialise with a more free and authentic communication, eradicating preconception and shyness. It’s a once-lifetime experience.”

News

A guide’s self-confidence

Jacinta Tevaga

Jacinta, 35, is from Samoa and has been visually impaired since the age of 17.

I feel more confident in reassuring my guests that they are looked after well and it gives me self confidence in that itself.

he Dans le Noir? experience for most patrons is communication – verbal, with no technology to distract them from interacting and having real conversations. Their guides, such as Jacinta Tevaga, see them leave with a sense of gratitude for the service and appreciation of life. But what is the guide’s experience?

Q. TELL US ABOUT YOUR EXPERIENCE AS A DANS LE NOIR? GUIDE. I did not expect to be hired, I thought OK, another interview, I have no experience in hospitality, I would be the shyest person and very quiet and have no idea what I will be doing. When I was told I had made it in, I was shocked, but gave it a go. When I first started I was nervous and thought I would be the first person to be let go or just quit. I realised how very anxious I was in front of people, just talking to a crowd of people scares me. I faced my biggest fear – I did not want to let the Dans le Noir? French team down, for they believed in me and saw potential that I did not see in myself. As I got myself used to settings and what to do, I felt more and more confident to do a good job.

As a guide, I get to meet different kinds of people from all cultures, and it is something I enjoy. Many people are unaware of how really dark the room is until they enter and I could feel their hand grabbing on my shoulder.

It’s been an awesome experience for me, it’s fun, and I get to be in charge for the night.

Q. WHAT DO YOU THINK IS THE MOST SIGNIFICANT BENEFIT PATRONS WALK AWAY WITH FROM THE RESTAURANT? I would say it’s appreciating life. Once they are ready to leave, they get an experience of what it is like to have no vision at all, and having a reality check of how difficult it can be to not know what is in front of them, whose voices they hear, what they are eating, etc. Their senses become amplified and many appreciate how good their food actually tastes. When they are in the dark, and nothing else can distract them, they get the sense of knowing what they are eating by the smell and texture of their food.

Parent to Parent July 2017

Facial recognition may improve diagnoses There are hopes the use of facial recognition technology in a world-first study will lead to more diagnoses of intellectual disabilities in children. Clinical geneticist and research fellow at New South Wales' Hunter New England Health, Dr Tracy Dudding-Byth, is leading the Face Diagnosis Project. It will see a secure online database developed where photos of children with an undiagnosed intellectual disability from around the world will be uploaded by their parents. Facial recognition technology will then be used to match children who look similar. Once a match is established, the DNA of those children will be studied, with the aim of discovering new genes. – ABC News For more information check out http://ab.co/2rr5F5D

UN Secretary-General:

Inclusive global development is priority

N Secretary-General Antonio Guterres said on May 10 that making global development inclusive of people with disabilities “must be an enhanced priority”. He was answering a question raised at a United Nations event in London by Harriet Ngendanabo, a Sightsavers campaigner based in Uganda. Harriet – a graduate of Connecting the Dots, a training programme for young people with disabilities that supports them to gain skills and find employment – had submitted the question (asked by moderator Natalie Samarasinghe): “People with disabilities have been left out of global development discussions for too long – how will you change this?” Guterres answered by highlighting the importance of understanding that the number of people with disabilities

Parent to Parent July 2017

in the world “is enormous … we are talking about something that should be in the centre of all development strategies, should be in the centre of all economic and social policies of all kinds; in education, in health, in urban development and taking into account the way houses are built”.

Sightsavers campaigner and spokesperson Harriet Ngendanabo. Photo: Sightsavers

“It is very clear that this must be an enhanced priority. It is also clear that we have not done enough, in the UN we have not done enough, and this is one of the areas we have selected in order to correct what has been a lack of sufficient commitment in the past.” - Sightsavers See full answer at http://bit.ly/2sjD1XJ

People

Drawing a world of

animated characters “When she’s drawing she withdraws into herself – she just loves it. It’s a calming thing for her. I’m hoping that when she gets to college next year we can find a way to channel that skill for her somehow.”

By CLARE CHAPMAN

illy Lowe is, like many tweens, often found on a device. In fact, she’s generally got not one, but two in front of her. Left alone, she’d probably be like this for most of her waking hours. Lilly, 12, is the youngest of five children. Living in rural Matamata, the family of seven has a lot to keep busy, but Lilly’s focus when off the internet is roller skating – and she’s pretty good at it. She’s also developed another interest which takes up most of her screen time. Lilly is fascinated with freehand drawing, creating replicas of animated characters as well as her own depictions of characters born in her mind. And again, she’s very apt at what she does; in fact, her drawings are capturing attention. Lilly is a different girl to the one in her formative years, mum Karen Condell says. In the first weeks of life it was evident she was different from her siblings, despite one already diagnosed with autism. “I knew when she was about six weeks old that something wasn’t right,” Karen says. “Being the youngest of five we had a lot to compare her to and our third child is on the spectrum as well, although she and her sibling are completely different and I didn’t see any parallels between them at that stage. Lilly could never be settled, even with breastfeeding or being cuddled.” Lilly was diagnosed just before she turned two. “Even when we were looking at getting a diagnosis for her, I still wasn’t

thinking autism because she was just so different to her sibling.” There was little in the way of help that worked for Lilly because she wasn’t very compliant, but she was put into preschool to start socialising. She didn’t appear to recognise her name, and didn’t say her first word, ‘mum’, until she was nearly four. Throughout primary school, Lilly had a teacher aide with her for most of the time, but she still ran away numerous Parent to Parent July 2017

times. “She didn’t like anything new or particular noises and music. Still now, she needs somewhere to hide if certain types of music come on in movies,” Karen says.

She’s since moved on to another show, Five Nights at Freddy’s, a slightly more gory series, but one in which the animated characters fascinated Lilly.

But it is this music that may have been a catalyst for some of Lilly’s drawing skills. A big part of her subject matter revolves around scenes of characters holding hands or kissing.

“She started looking up YouTube videos about how the models are made and now most of her drawings are based around these characters,” Karen says. “Her drawings are very similar to what she sees online, but she will also create her own characters too.”

“While she can’t understand why anyone would ever want to do that, she likes the sort of music that generally comes on in scenes like that,” Karen says. Lilly started drawing last year at a time when she was fixated with My Little Pony. She started watching video clips of other people talking about the characters and playing with them. Lilly now uses an app called ToonTastic on which she creates her animated characters by drawing freehand on her iPad.

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Parent to Parent July 2017

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While using the app to draw is Lilly’s preferred option, she won’t say no to drawing with pen and paper, and if she doesn’t get to school early enough to do some drawing, she’s devastated.

“When she’s drawing she withdraws into herself – she just loves it. It’s a calming thing for her. I’m hoping that when she gets to college next year we can find a way to channel that skill for her somehow.” Academically, Lilly’s around a year two or three level, and socially she enjoys playing with slightly younger children, often those around seven or eight years old, who will play My Little Pony with her. “Because her intellectual level probably won’t go much further, there is a focus for her now on social skills and working out how to channel her drawing skills.” Next year, Lilly will attend Matamata College and be part of the Totara Learning Centre where her journey will continue, and as part of that Karen hopes she will develop new skills and find a way to utilise her interests in different ways.

Journey with Parent to Parent

aren Condell first had contact with Parent to Parent just over two decades ago when one of her children was diagnosed with autism. At the time she had never heard of autism and it was a topic not widely discussed.

Karen did the support parent training

Having become a single parent shortly after, Karen says she

and I want to give back. I know

struggled to cope with the situation and called Parent to Parent –

that nothing can be fixed, and

not for advice initially, but just to talk and be listened to.

I think that’s important. But for me,

Today, Karen has herself become a support parent – a role in which she hopes she can give back to the community by providing that listening ear she needed so much 20 years ago, and then again with Lilly’s diagnosis. “For me, Parent to Parent is has been a hugely valuable part of our lives,” Karen says. “Over the years, our other children have

course last year and she’s since had her first parent contact her. “After 20 years, I feel I have some understanding and knowledge

I just needed someone to listen, to tell me I was doing a good job, and to provide advice, but only when I was ready for it and asked for it. “So now, I want to be that person and I feel I have the skills to do that for other people. It’s about listening and supporting other parents; just talking things through and supporting them.”

attended SibCamps, we’ve been on family weekends away, to day trips and events, and I’ve been to an autism conference. Parent to Parent has been my ‘go to’ place if I’m not sure about anything and I always recommend them to other people for this reason.”

Parent to Parent July 2017

News

Placebo effective despite intellectual disability

ontrary to earlier beliefs, people with severe congenital intellectual disability are sensitive to placebo-like effects, new research from Karolinska Institutet published in the scientific journal Neurology shows. The placebo effect is an example of how the power of the mind may influence the functions of the body, such as when a simple sugar pill alleviates pain when the taker believes it to be a real analgesic. But placebo-like effects also occur when expectations influence the efficacy of real drugs. Until now, placebo researchers have presumed that this type of expectancy effect requires higher-order intellectual functions, such as reasoning, abstract thinking and predicting the future. But it now turns out to be more complex.

outcomes between the two groups – despite the fact that the patients had received exactly the same drugs,” says Dr Jensen. “The only difference between the groups was the likelihood of getting an active drug.” The conclusion is that implicit expectations conveyed by the people who administer the drugs, or who are otherwise involved in the treatment, are likely to influence the patients’ neurobiology and, ultimately, their response to treatment. In that sense, expectancy effects are not only the result of facts and suggestions but also the subtle social cues patients pick up from people around them.

“This aspect of the placebo effect has been underestimated,” says Dr Jensen. “This means that the models we’ve created of how the placebo effect works should be revised so that the focus Karin Jensen Photo: Bildmakarna isn’t just on advanced cognitive functions, such as the patient’s ability to create abstract Karolinska Institutet’s Department of Clinical Neuroscience future scenarios.” assistant professor Karin Jensen and colleagues at Karolinska and Harvard Medical School analysed 24 – Medical Xpress May 17, 2017 published medical studies involving people with congenital intellectual disability (an IQ below 70), including diagnoses such as Down, Fragile X or Prader-Willi syndrome. In half Read more at: http://bit.ly/2ufVd1H the studies all participants received active drugs. The others were placebo-controlled, in which participants did More information: Karin B. Jensen et al. Certainty of genuine treatment increases drug responses among not know whether they were being given a placebo or intellectually disabled patients, Neurology (2017). DOI: active drug. 10.1212/WNL.0000000000003934

“We only compared the results from those who received real drugs, and found significant differences in treatment

Parent to Parent July 2017

Journal reference: Neurology Provided by: Karolinska Institutet

Access provides choices for humans to participate

hen we talk about access and accessibility, we are referring to our ability to engage with, use, participate in, and belong to, the world around us. About one in four New Zealanders are forced to deal with barriers to accessibility on a daily basis, and among Māori a third of the population has a disability, including almost half its under 25s. That’s why the Access Alliance has come together to call on Parliamentary Parties to commit to introducing accessibility legislation in the lead-up to the general election being held in September 2017. The Access Matters campaign is underpinned by an evidence base that demonstrates accessibility legislation is complimentary to New Zealand’s current settings that include the United Nations Convention on the Rights of Persons with Disabilities, The Disability Action Plan 2014-2016 and New Zealand Disability Strategy. It’s time for New Zealand to commit to introducing mandatory and enforceable legislation to create the conditions which ensure that people with disabilities or

access needs, permanent or temporary, have the same choices and opportunities as everyone else to fully participate in life as both citizens and consumers. The Access Alliance is a group of 10 active organisations spanning the disability community. Collectively, the group assists approximately 163,000 New Zealanders and provides a pan disability perspective. Parent to Parent is a Campaign Supporter. The members are: •

Auckland Disability Law

•

Blind Foundation

•

Cerebral Palsy Society

•

CCS Disability Action

•

Deaf Aotearoa

•

Disabled Person’s Assembly

•

Inclusive NZ

•

Kāpo Māori Aotearoa NZ

•

Parents of Vision Impaired (NZ) Inc

•

People First – Ngā Tāngata Tuatahi

For more information or to stay up to date with the Access Matters campaign visit www.accessalliance.org.nz

ACCESSIBILITY HURDLES INCLUDE: • Obstacles when getting around (eg, inaccessible public buildings, spaces and transport) • Inaccessible products and services (eg, lack of access to health services or to technology)

• Information and communication barriers (eg, inaccessible websites and apps, lack of access to printed materials, lack of closed captioning) • A lack of understanding of why access matters (eg, underestimating the potential of disabled people as students, employees, volunteers, parents, etc) Parent to Parent July 2017

Opinion

Disability issues and whānau hauaa

By Dr HUHANA HICKEY, MNZM

āori with disabilities (whānau hauaa) are often left out of many of the discussions and debates around disabilities. I don’t believe it is intentional but just the way our organisations work. Any Māori representative groups such as Ngāti Kapo (blind) and Mana Turi (deaf) are representative of a single form of disability and not necessarily from a Māori perspective. I have often found others miss out, such as waka turu (physical disabilities) and tangata whaiora (mental health). Where it does work for Māori is in areas such as intellectual disability where People First, for instance, has a majority membership of Māori – possibly as it’s the highest impairment group among Māori disability statistics (Statistics NZ, 2013) and therefore their voice is strong within the organisation. However, this is not the norm. Māori are excluded from the Office for Disabilities Issues Expert data analysis group as there is no Māori expert sitting on that committee; any Māori sitting on any ministerial committee are there by government

Parent to Parent July 2017

appointment, not an appointment made by the people which is the norm within Māori decision-making. Whānau hauaa are excluded from any international representation at UN level unless included around disability – but not around indigenous identity. Despite there being indigenous disability meetings in Geneva and New York, this government has refused to support any Māori with disabilities who wish to go to represent their issues. So given Māori are predominantly under-represented, look upon disability quite differently and often find they don’t align with the values of their representative organisations, then we have some major issues to address, including most consultation taking place with providers and not the individuals themselves or their whanau. Why are these issues important? They are very important if we look at the fact that 33.3% of Māori Dr HUHANA HICKEY Photo: Supplied

have a disability, this is in contrast to the non-Māori rates of 24% and yet, few Māori are sitting at the table with the government. Our youth rates are very high also, as is our rate of disability at the age of 40 growing to 67%, in contrast to non-Māori reaching their 60s before the rate of disability increases. The majority of whānau hauaa live in poverty and mostly unemployed, have other socio-economic issues and their health is worse than the mainstream population. In fact the deprivation statistics by the Ministry of Health (2015) show they are the most deprived group above non-Māori with disabilities. A lot of the issue for whānau hauaa is that the concept of disability did not exist prior to colonisation – and there is the issue. When the missionaries came, they challenged our knowledge of our traditional treatments, thinking and values, and as a result many whānau hauaa ended up being excluded and even ostracised, institutionalised and abused by whānau.

disabled being forced into residential or rest home care, to live with their whānau, or to try and struggle without any help or home. I do believe the main election issues for Māori are having our voice first and foremost (not that of providers or other organisations); to go beyond impairment politics and look at the issues as Māori (in other words, let whānau hauaa define the journey for whānau hauaa). Another issue is housing – at crisis level and affecting us all. The final main issue is around paying whānau as carers. It is ridiculous that I can get funding and pay a stranger when my partner gets nothing for caring for me. Yes, a certain amount of natural support exists, however, partners and families do not usually do personal cares on each other and that’s the issue. Why is it that ACC can have whānau paid as carers, but MoH clients can’t?

The issues we have are the same as everyone else, but with the added need to give us appropriate housing, income and supports.

In summary, whānau hauaa are not included well by many disability agencies and providers; only 16% access any kind of supports and services.

But there is one issue that is outstanding, and it is the issue of the Atkinson vs Ministry of Health case, where whānau were – after a huge battle with the Government and bad advice from the Ministry – finally recognised as having the right to be paid as carers. This became bittersweet when it became limited to parents of adult children, a less-than-minimum wage for doing the work, and amendments made to the Bill of Rights Act, denying us any chance of redressing the lack of compliance to the Treaty of Waitangi, and ignoring completely the role of whānau in the lives of many whānau hauaa. The exclusion of whānau paid as carers for most of us means many Māori who live rurally cannot stay connected to their Marae and traditional way of living as the services and resources are scarce in the rural sector.

To change this, we need to ensure Māori whānau with disabilities are included at all levels of all groups with disabilities, and a pan-tribal pan-disability disabled person’s organisation (DPO) needs to exist. We have Pasifika, nonMāori, but only blind and deaf Māori are represented as a DPO and the rest never consulted or included in any DPO work.

Another issue to consider is that of housing. The number of whānau hauaa living in cars, vans and on the streets, or placed in unsuitable accommodation has grown to crisis level. I have never seen as many of our whānau homeless as I have since last year.

Finally, we need to support each other to ensure all are included at all levels, including the whānau.

Dr Huhana Hickey, LLB/BSoc Sci, LLM (Distinction); PhD in Law and Tikanga Maori from the University of Waikato. Solicitor at Auckland Disability Law (the first disability community law centre in New Zealand, 2008-2012) and advisor with Health Sciences at the Auckland University of Technology (2012-2016). Huhana has been an indigenous peoples representative for the International Disability Association steering group caucus during the development of the UN Convention on the Rights of Persons with Disabilities. She is currently an HRC Post-doctoral fellowship at AUT researching the health and disability issues for whānau hauaa (Māori with disabilities).

It has grown, yet this government refuses to bring in a plan to provide for adequately modified housing, leaving many

Parent to Parent July 2017

News

Win a free tote bag! Get your hands on a free ‘Same Emotions, Different Expressions’ designer tote bag! Simply head to the Parent to Parent Facebook page, like and share the post titled ‘Competition Time!’ and you’ll go straight in the draw! facebook.com/ parent2parentnz

“Our goal is to start a conversation about autism working towards a more understanding & thoughtful society” -AsOne NZ

Parent to Parent July 2017

Same emotions, different expressions By SUE PAIRADEAU

arent to Parent is excited to announce the arrival of its charity tote bag – the brainchild of two Auckland high school students.

This year Kayla Turner and Caitlin Hancy have been working tirelessly in their spare time to start AsOne NZ. The business is part of their impact project at Albany Senior High School mentored by teacher Lloyd Gutteridge, and aims to raise awareness of issues facing society in New Zealand. AsOne NZ’s first enterprise has been to raise awareness and help change the perception of autism. “We decided to start with autism due to our mentor’s ties to the cause,” Kayla said. “While we don’t have personal experience with autism, we have realised how important raising awareness and changing perception of autism is within New Zealand.” Lloyd is also the father of Joel – a 16-year-old with autism – and Lloyd’s wife Elaine works in Parent to Parent’s Auckland office.

“Parent to Parent was instrumental in helping us on our journey to creating this bag, and we are extremely grateful that we have been able to learn more about it,” Kayla says. “Our goal is to start a conversation about autism working towards a more understanding and thoughtful society – embracing the many wonderful differences rather than framing autism as a deficit to be fixed.” AsOne NZ also created the bag in collaboration with Little Giant, a graphic design company working with companies such as Spark, Les Mills and Air New Zealand. The bags are $12 each, with $2 donated to Parent to Parent. A card insert comes with each bag explaining a bit about AsOne NZ, Parent to Parent and autism. To order email info.asonenz@gmail.com with the number of bags to purchase, and you’ll receive shipping and payment information.

AsOne NZ: Kayla Turner, left, and Caitlin Hancy Photo: Maddy Cleveland

He says it is critical young people engage empathetically with difference and the challenges which autism brings. “I have been in the supermarket when Joel became agitated in the checkout queue and had to face the looks of disapproval/confusion. The tote bag is the first in a number of ways in which a simple message can inform and assist in the perception of autism. “It has been a real pleasure to have been involved with AsOne and to see these young social entrepreneurs develop their idea from early discussions/brainstorms into a fully formed awareness campaign.” The Bachelor 2016 couple and Cure Kids ambassadors Art Green and Matilda Rice already have their tote bag. Photo: Supplied

Parent to Parent July 2017

Election 2017

Your Voice Your Vote The next Government has an opportunity to tackle the barriers faced by people with all disabilities and help deliver an inclusive future by 2020. Itâ&#x20AC;&#x2122;s important that the voices of disabled people are heard in this election. Voting and taking part in community election events in your local area gives you the chance to let politicians know whatâ&#x20AC;&#x2122;s important to you and what you would like to see them do.

Parent to Parent July 2017

How do I vote? The next general election will be held on Saturday the 23rd of September 2017. In order to make sure the process is easy for you, it’s a good idea to check your details are correct and current by visiting the electoral register at elections.org.nz If you aren’t registered to vote, you can register online, by contacting the electoral commission at elections.org.nz or by calling 0800 36 76 56.

Disabled voters If you have a disability that prevents you from voting in person or you need help to enrol or vote, there are various options available. Any registered elector may fill in a voting paper for a person who is unable to do so themselves. They must write on the form Elector physically disabled – signed by their direction. People who hold a Power of Attorney must sign and state Elector physically disabled – Power of Attorney. More information is available at elections.org.nz under the keyword ‘disability’.

VOTING IN ADVANCE If you know you won’t be able to get to a polling booth on September 23, you can vote in advance. Information on how to vote in advance will be available closer to election day at elections.org.nz Otherwise, you can vote at your local polling booth on Saturday September 23. If you’re planning to vote on the day, information about polling stations in your electorate will be available at elections.org.nz closer to the day. All polling booths should be wheelchair accessible with disabled parking.

Parent to Parent July 2017

Politician Point

Minister and MPs answer disability-related questions

What is needed going forward to make New Zealand a more inclusive society?

Access Alliance is asking for the 3 The government to introduce legislation to ensure people with disabilities can participate fully in their communities. How do you think this could be achieved?

Access Alliance has recently created 2 The the Access Matters campaign (of which Parent to Parent is a member). What are your thoughts about the Access Matters campaign and its aims?

What has been done over the last term to develop New Zealand as an inclusive society?

Q. TWO

Nicky Wagner MP Christchurch Central

Minister supporting Greater Christchurch Regeneration, Minister for Disability Issues, Associate Minister of Conservation, Associate Minister of Health, Associate Minister of Tourism

Q. ONE The Disability Strategy focuses on eight outcomes, one of which is ‘attitudes’. Through education and awareness we can help ensure disabilities are understood and accepted, and disabled people are treated with dignity and respect. A nationwide transformation of the existing disability support system, based on the Enabling Good Lives vision and principles, is under way. The aim of the transformed system is to ensure disabled people and their families have greater choice and control over their lives, as well as the support they receive from government. The transformation will incorporate a social investment approach, which is about investing money early to produce better life outcomes for disabled people in the long term. Through Budget 2017, we’re investing an extra $205.4 million over four years in disability support services, including $27.1 million over the next three years in Enabling Good Lives.

Parent to Parent July 2017

I welcome any organisation or campaign that promotes conversation and awareness about disability issues. Having this discussion encourages us to think about how we can use accessible practices in our everyday lives, which in itself goes toward achieving the Disability Strategy’s vision. Q. THREE The Office of Disability Issues is currently considering international examples and whether legislation would be the best avenue for improving accessibility. There is nothing to stop anyone from improving accessibility now by using the great information and advice already available. Q. FOUR Examples of recent work to improve inclusiveness: New Zealand Sign Language Board — established in May 2014 to promote and maintain the use of NZSL. Disability Confident campaign — launched in November 2016 to build employer awareness, and provide access to a wide range of existing programmes, services and resources to support employers to hire and retain disabled people. New Zealand Disability Strategy 2016-2026 — the revised Strategy was developed based on what disabled people, their families, whānau and supporters said was most important to them.

Election 2017

Poto Williams

MP Christchurch East Spokesperson for the Community and Voluntary Sector, Disability Issues, Associate Justice Spokesperson (Sexual and Domestic Violence)

Q. ONE I know there are lots of individuals and groups who are taking leadership roles in this regard, however, the government definitely has a role to be leading with legislation and policy. Imagine rather than the Ministry for Disability Issues there was a Ministry for Inclusion. Q. TWO Labour supports the aims of the Access Alliance, the development of legislation and implementation of the policy. Q. THREE

them to reach their potential, through to ensuring access to meaningful employment for everyone. Q. TWO The Access Matters campaign is incredibly important. Everyone benefits from universal accessibility and a genuinely inclusive society. Ramps don’t just benefit wheelchair users, they benefit elderly and parents. Captions don’t just benefit deaf and hard of hearing, they help children improve their reading skills. It makes sense socially and economically to prioritise accessibility. Relying on voluntary approaches will not get us to where we need to be; overseas experience shows legislation for access is also needed. Access is too important to be left to the whims of corporations and organisations. Inaccessibility has profound ongoing consequences, not just for disabled people, but their caregivers, family and friends. The Green Party is proud to be the first party to announce support for the Access Alliance vision of a 100% accessible Aotearoa.

As has been demonstrated overseas, it firstly takes commitment then it takes time to craft good legislation in partnership with the people it impacts and then taking time to ensure all affected parties are supported to make the changes necessary. It has been suggested this could take 10 to 20 years.

Q. THREE If the Government is serious about inclusion for people with disabilities, it will prioritise bringing in accessibility legislation as quickly as possible. There are good models from overseas that can be adapted to the New Zealand context. The Green

Q. FOUR

Party is strongly committed to this.

There have been some changes to access to employment, changes to Enabling Good Lives, but much more that needs to be done.

Q. FOUR

Mojo Mathers MP Rangitata

Spokesperson for Conservation, Animal Welfare and Disability Issues

There has been great work done by disability organisations, but this is not enough on its own. Outcomes for many people with disabilities remain poor. Far too many continue to be locked out of housing, transport and employment. The Green Party is committed to working towards the transformational change needed for a genuinely inclusive society. Accessibility legislation is one important tool for making that happen. Mojo Mathers is NZ’s first deaf MP and one of five deaf MPs worldwide.

Q. ONE We need political commitment to ensure all New Zealanders with disabilities can fully participate and contribute to society … by recognising and removing barriers to participation that exist in all areas of society. This starts with affirming the right of every child to an inclusive education that enables

*More Party spokespeople talk about disability issues in our September magazine.

Parent to Parent July 2017

Opinion

Success with medicinal cannabis By Dr HUHANA HICKEY

hen I began my journey with medicinal cannabis, I wasn’t sure what the effects would be, or if it would work. I hadn’t had a drink or done illegal drugs for over 30 years (yes, many of us imbibed as young people once!) so wasn’t sure I wanted to end up feeling more stoned that I did on my legal meds. I researched and discovered a drug perfect for my type of MS, Relapsing Progressive Multiple Sclerosis. I spoke to my neurologist, who sent me to the pain clinic and I was approved for Sativex, a pharmaceutical-grade medicinal cannabis product. Although it was slow to work and I always smelled like I had lived at the local pub, I found it was OK, but it cost $1200. This eventually left me $16,000 in debt. I then discovered a cheaper product, Tilray, made in Canada. I was accepted as the first person in New Zealand on it. It is less processed and a far better product than Sativex – simply cannabis and grapeseed oils. It works better and is half the price (which still makes it expensive). I am working to fight to reduce the cost so it is accessible to others.

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It is not a cure, but it is better than opiates, especially for neuropathic pain, seizures and spasms. While I was sceptical, I am now convinced; it is similar to homeopathic medicines with much less side effects. However, while I don’t get stoned on it, I do get mildly euphoric for a short time and take it in the evening, not all day. The CBD oil is the key component for healing, and while the government declassified CBD, we do not yet have the range of products in New Zealand that we can legally access. Tilray is about to enter the market generally and the rest will follow over time. It will not work instantly, and it might not be much use to some people, but it is an alternative to opiates and less damaging on the body.

For updates and information/ support visit Medicinal Cannabis Awareness New Zealand www.mcawarenessnz.org

Cannabidiol (CBD)

BD is one of the most prevalent chemical compounds in the cannabis plant. Mostly found in the resin glands (trichomes) of the female cannabis plant, CBD is among more than 80 chemical compounds known as cannabinoids.

Unlike tetrahydrocannabinol (THC), it is non-psychoactive so does not give a ‘high’. However, a small amount of THC is required as it “kicks in the door” making CBD more efficacious.

How CBD became more famous than THC Charlotte Figi, born October 18, 2006, developed the rare Dravet syndrome (severe myoclonic epilepsy of infancy or SMEI) as a baby. By age three, and despite treatment, her 300 grand mal seizures a week were severely disabling and life-threatening. As a last resort, when Charlotte’s health started to deteriorate at five years, her parents and physicians turned to medicinal marijuana. They said they were astounded when she experienced a reduction in seizures after her first dose of R4, a type of CBD. When that supply started to run out they went to marijuana growers the Stanley brothers and their ‘Realm of Caring’ organisation in Colorado, where the law permitted medical cannabis for eight conditions including seizures. The brothers named the extract she used Charlotte’s Web – now the most famous brand of CBD. It was developed in 2011 by crossbreeding a strain of ‘Hippie’s Disappointment’ low-THC marijuana with industrial hemp. This process

created a variety which today consistently contains less than 0.3% THC. Charlotte’s story first featured in the 2013 CNN documentary Weed and spread throughout the media like wildfire, increasing demand for Charlotte’s Web and similar CBD products. She now uses the marijuana extract in olive oil (under tongue or in food). By 2013 her seizures were down to about four a month, and she was able to engage in normal childhood activities. The Stanley brothers (Joel, Jesse, Jon, Jordan, Jared and Josh) come from an evangelical Christian family of 11 kids from Colorado Springs. In 2009 Josh decided to plant marijuana on their farm to help his cousin whose cancer treatment wasn’t working. The other five brothers joined (after they realised he wasn’t joking). They view it as ‘God’s plant’, which does not compromise their Christian beliefs. They are now one of the biggest producers of cannabis oil in the USA, and because of its extremely low THC content, the oil is called ‘realm oil’ not cannabis oil.

Parent to Parent July 2017

News

Cannabidiol (CBD) in NZ

BD is still a controlled drug under the Misuse of Drugs Act 1975, and Ministry of Health approval is required to access CBD products, however, doctors can now prescribe them. Changes to remove some restrictions are expected by the end of the year following advice from the Expert Advisory Committee on Drugs (EACD). The EACD has also considered that CBD should not be a controlled drug. The Associate Minister of Health announced in June 2017 that the Misuse of Drugs Regulations 1977 will be amended. CBD will continue to be a controlled drug, however, many of the restrictions currently imposed by the regulations will be removed. The changes will mean that CBD products, where the level of other naturally occurring cannabinoids

is less than 2% of the cannabinoid content, will be easier to access. According to MCANZ*, NZ Medical Association chair Dr Kate Baddock said she hoped more products would become available now CBD was easier to prescribe. “They are an effective pain relief … the CBDs have very little, if any, effect on the mind. They are medicinal.” She rejected suggestions doctors were reluctant to use it to treat patients. “To be honest, I don’t put a lot of stock in it. Most GPs who are in practice … Baby Boomers grew up in the ’60s and ’70s. That was when marijuana was widely used.” *Medical Cannabis Awareness NZ

Dating website rewards Kiwi disability sector

ew Zealand’s community of people with disabilities and health impairments is set to benefit on multiple levels from a new website. Owned and operated by Kiwis in the disability sector, the website aims to create an online community where physical, intellectual, medical and behavioural ‘difference’ is expected and unsurprising. Members can feel safe surrounded by like minds, enabling them to make connections and be supported in their aspirations for friendships and life-long relationships. Unlike overseas-owned ‘disability dating’ websites available in New Zealand, membership fees are not siphoned overseas. Once the website has achieved its goals,

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hundreds of thousands of dollars in profit will annually go back into New Zealand’s disabled community, supporting families and individuals through funding and sponsorship. One significant goal is to offer a total inclusion service for anyone aged 18+, with or without disabilities and health impairments, LGBT-friendly and accessible to vision and hearing-impaired. Ultimately it plans to cater to multiple languages. As the website and brand is still being finalised, full details will be released publicly before its launch. If you or someone you know might be interested in becoming a member or finding out more about this project, please email info@loop.kiwi.nz to receive a short survey.

Marathon less tricky than daily tasks

hey began in Union Glacier in Antarctica, which she completed in 5½ hours, and went from there to Punta Arenas in Chile, followed by Miami, Madrid, Marrakech, Dubai and finishing in Sydney. Blind Irish marathon runner Sinead Kane, a qualified solicitor, certified mediator and PhD researcher, was in January the first blind person to complete the World Marathon Challenge – seven marathons on seven continents in seven days. “A lot of people have said to me that the World Marathon Challenge must have been extremely difficult. Some of the time, I feel I nearly need to make up a story about how difficult it was.

sure you don’t pour boiling water over your hand rather than into the cup. These are the daily challenges I face. And therefore, I don’t see running as a challenge. “I couldn’t choose how I was born. Every day, you are walking along the street and there are people with full sight so engrossed in their phones that they end up walking into me. They get annoyed at me and they are huffing and puffing. Yet, they are the ones with full sight and yet they are choosing not to look where they are going.” – Irish Examiner For the full story go to http://bit.ly/2pOkilq #blindrunner777 #worldmarathonchallenge

“For me, it wasn’t as difficult as I imagined. The reason I say that is because my biggest difficulty in life is my disability and getting through simple day-to-day activities that people take for granted. “With the World Marathon Challenge, and with every race I do, there was a finish line. With my disability, there is no finish line. “If I want to know if it is raining when I get up in the morning, I actually have to go outside, rather than simply looking out the window. When you’re making your first cup of tea to get you going for the day, you have to make

Sinead Kane with her running partner John O’Regan in Dublin earlier this year. They started training in 2014 before her first marathon.. Photo: Sportsfile

Parent to Parent July 2017

People

Small steps are giant leap for Tama By CLARE CHAPMAN

he age-old adage ‘knowledge is power’ has a lot of wisdom in it. But for Kirsty and John Trueman, not having knowledge of their son’s condition hasn’t stopped them empowering themselves and doing everything possible to help him achieve his full potential. Tama Trueman is five; one of five siblings. The family live at Whakamaru between Taupo and Tokoroa, relatively geographically isolated from New Zealand’s main centres. The Truemans, however, haven’t let anything stop them – their lack of insight into Tama’s condition combined with their geographical isolation have simply made them more determined. When Tama was born, Kirsty says she knew straight away something wasn’t right. “Because he was my fourth baby, we had the experience of having dealt with newborns

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before and Tama didn’t cry or move around like the others did,” she says. “But the doctors told us he was fine; he was just a placid baby.” So they took Tama home but it wasn’t long before they were back at the doctor and were told Tama had hypotonia. “Hypotonia is essentially weak muscles, but it’s not a diagnosis. Hypotonia is a symptom rather than a condition and they didn’t know what was causing this symptom.” At Starship Children’s Hospital in Auckland, Tama underwent numerous tests to try to ascertain his condition, but none were successful; no diagnosis made. “What they did find though, was that he wasn’t breathing deeply enough because of his weakened muscles, so he ended up being on oxygen for the first year of his life. And from about six months old it was clear he wasn’t able to

2015: Tama with siblings (L-R) Makaia, Tama, Kaani and Neitana.

coordinate his muscles to swallow properly, so he was swallowing into his lungs,” Kirsty says. At six months, Tama was given a mic-key button to be fed directly into his stomach. Kirsty and John are resigned to the fact that it’s unlikely they will ever have a diagnosis. But what they’ve done for Tama – without knowing what he suffers from – is quite remarkable. Tama didn’t move much or meet normal milestones; he never sat up, walked or talked. He’s never said ‘mum’ or ‘dad’, and it’s unclear what level of cognitive ability he has. “Without a diagnosis we just started looking for anything that we thought might help Tama,” Kirsty says.

service. There he also got to do swimming and Riding for the Disabled. With very slow progress, Kirsty and John researched what was available overseas. When he was three, and after fundraising over $8,500, the family took him to Los Angeles for three weeks’ treatment at NAPA, the Neurological and Physical Abilitation Center. It runs specialist intensive programmes combining occupational, physical and speech therapy. “A big part of therapy at NAPA was Cuevas Medek exercises. It was something we had never seen before – where they used gravity to help his body work out how to move. They had him standing up when he didn’t even know how to sit up.”

“Without a diagnosis we just started looking for anything that we thought might help Tama.”

Tama’s journey started at Conductive Education in Hamilton each week, which involved repetitive exercises to develop his muscles. “What was available was a morning session once a week and we didn’t see much improvement, so with huge family support we decided to drive to Conductive Education in Wellington.” Kirsty or his Nanny Lin would stay up to three weeks every month so he could participate in its 9am-3pm

Tama stood up alone for the first time aided by a neurosuit, a therapeutic tool originally designed to help Russian astronauts re-adjust to gravity. It is worn during occupational and physical therapies to help body alignment, awareness and motor planning. - Tama’s mum Kirsty

“He wore this suit that had bungee cords all over it, tightened to make it harder to move,” Kirsty says. “It was really hard going for him, and for us seeing him struggle, but it made such a difference.”

Parent to Parent July 2017

When the suit comes off it is easier to move. This treatment was equivalent to a year’s conductive therapy. Since that first visit to LA, NAPA opened a centre in Sydney and the family has been three times for Tama’s intensive therapy. During their last visit in March this year, Tama took 11 steps on his own. “It was a huge moment for him and us. It was so exciting to see him get that far.” But for Kirsty and John, the hardest thing is coming home after getting help like this from overseas. “We know when we come back to New Zealand that there just isn’t the same support available or the same resources that there are overseas.”

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Since he first walked at NAPA in March, Tama has progressed and can take steps while holding one hand, but doesn’t walk unaided yet. His family hopes he will, if it’s possible.

“It was a huge moment moment for him and us. It was so exciting to see him get that far.” - Mum Kirsty on Tama’s first steps

Despite that, the Truemans are determined to help Tama reach whatever potential he has.

“We still don’t know whether he is trapped in his body and fully understands what’s happening, or if he is blissfully unaware. I know that he gets excited for people or things he likes, and he will laugh and cry, but we don’t really know the extent of his understanding.”

Along with physical mobility, a focus of theirs is to help Tama communicate as best as he can.

“Until recently, our focus has been about him walking and moving, but as he got older, we realised that not being able to talk or communicate is harder for him than not being able to walk, so we’re aiming

Left: March 2017: Tama and dad John in Sydney. Right: Tama with his NAPA Certificate for completing three weeks’ intensive therapy.

Left: Tama in a cage doing exercises. Right: 2016: Tama, aged 4, walks for the first time holding hands with mum Kirsty and dad John.

to really help him with communication this year.” Tama starts school later this year – his parents will drive him an hour and a half to Hamilton each day so he can attend a specialist school where therapists are available daily.

Tama and biggest brother Daniel.

“We just want Tama to reach whatever potential he has and to lead a happy life. “We are blessed that we have had the family and community support to give him the best start we can.”

“We just want Tama to reach whatever potential he has and to lead a happy life.” - Tama’s mum Kirsty

Tama Trueman in his astronaut suit at NAPA.

Parent to Parent July 2017

News

By STEVEN MAHONEY

e raised thousands of dollars, and connected with hundreds of thousands of people. A huge thank you to everyone who played a part in Parent to Parent’s first Celebrity Art Auction.

Many artworks gained national attention for their unique style or approach. Former Black Cap Chris Martin’s painting Ducks poked fun at his dubious record of holding the second-highest number of ducks in world test cricket history. A last-minute bidding war saw Ducks sell for $765.

An eclectic mix of entertainers, politicians and sportspeople put paintbrush to canvas for Parent to Parent’s inaugural Celebrity Art Auction in May. Wellknown Kiwis like Bernice Mene, Suzy Cato, Richard O’Brien and others jumped at the chance to create for a cause.

Richard O’Brien, of Rocky Horror fame, generously donated three original artworks to the auction. His drawing Hero featured on Trade Me’s home page as well as international fan club sites, catching the attention of fans worldwide. The piece sold for the handsome price of $600, and now hangs proudly on the wall of Napier resident Samuel Sims. “A chance to own an original piece of [Richard O’Brien’s] art, no way was I going to miss that chance,” says Mr Sims. “I hope all the others that won the auction pieces they bid on, are as happy with theirs.” Mr Sims is one of 16 New Zealanders who are now the proud owners of a truly unique slice of Kiwiana. Thank you to all our artists, followers, likers, sharers, viewers, bidders, and winners who made the auction such a success.

Former Black Cap Chris Martin’s Ducks

“When we heard about the wonderful art auction to raise funds for Parent to Parent we were thrilled to be a part of such a meaningful project. We make music for families and children, as that is where our hearts are … we are parents first and foremost,” said award-winning children’s entertainers and art auction participants Itty Bitty Beats.

Parent to Parent July 2017

See you again next year!

Like Parent to Parent’s Facebook page to be notified when next year’s auction rolls around! http://bit.ly/2uA685V

Richard O’Brien’s Hero

People

Getting to know

incredible Joy By SUE ROBERTSON

“J

oy’s name was chosen before she was born and that’s what she has been, a joy. She is our third child and we have been lucky to have her in our family – and she has been lucky to have us,” her mum Kathy says.

“We knew God loved our baby and we knew our life’s work was to make sure Joy was going to have the best life we can give her.”

“Joy was a very sick baby. Born in Taiwan, she spent her first few weeks in an incubator on 100 percent oxygen. There was a clinical experimental drug available to give her a chance, but this was going to take all our family’s savings. So we prayed, and Joy gradually recovered. We brought her home when she was 20 days old.

“A neurologist told us she probably wouldn’t ever walk, would probably have eyesight problems, some mental retardation, and wouldn’t live much beyond 20 years.”

“A neurologist told us she probably wouldn’t ever walk, would probably have eyesight problems, some mental retardation, and wouldn’t live much beyond 20 years.” It was the cruellest thing Kathy had ever heard. “I cried so much, and then I said ‘Whatever! I’ll just do my best!’.

- Joy’s mum Kathy

Joy’s family moved to New Zealand in 1997 and settled in Hamilton. When Joy wanted a bike just like her brother and sister, she got a tricycle and rode this to her local Parent to Parent July 2017

supervisor anyway and put my name down as a reliever,” Joys says. “The supervisor’s name was also Joy, and her voice was so bold I got a fright when she rang up offering a position – my sister took up the offer instead. Rain or shine for the next two years my sister and I delivered 130 local Hamilton Press newspapers every week after school – my sister on her bike and me on foot using a back pack with support from mum.

Joy Ho. Photo: Steven Mahoney

kindergarten. It was attached to a high school that had an Early Childhood programme, run by people who were open-minded and innovative. “The most challenging obstacle for me was always my identity,” Joy says. “Why am I different to normal people, and why I just cannot do some simple things as well as I expect? The idea that thoughts determine your future has always helped me to remain positive.” Kathy said the family didn’t think much about ‘special’ – they just went with the flow and enrolled Joy at her primary school with her sister. Joy went on to the local intermediate and graduated from high school in 2009. Her experiences at college were mixed. Although mainstreamed for academic classes, Joy was less involved with her typical peers and more orientated towards her friends in the unit where she felt socially included, describing them as people who appreciated diversity, who were compassionate and humane and able to ‘count on each other’. She got her first paying job at age 12. One of Joy’s strengths is persistence, and Kathy learned to ask: “How do we make this happen?” “I started delivering local newspapers after I saw a friend doing it. I’d heard the waiting list was way too long for me to have any chance of delivering newspapers, but I rang the

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“My sister eventually left home and I took over the job and continued to share the deliveries with another friend, during which time I developed an interest in money and accounting when I began to split the wages. During 20062007 I also delivered a second weekly newspaper and some advertisement pamphlets with the same job partner, and this increased my newspaper deliveries to three days a week.

“I finished a Bachelor in Management Studies majoring in Accounting, after six years of study.” - Joy

“My trike arrived in 2008, customised to hold 30 kilos. I gave up two deliveries and started to deliver the daily Waikato Times (without mum’s support). It was a 30copy six-days-a-week delivery; I did three days and my job partner did the other three.” Joy delivered papers for more than seven years, becoming the Waikato Times’ longest paper-run girl and making front page news. She was awarded Youth of the Year for her paper-run role. “After graduating from college I enrolled at Waikato University. Campus life and study held some challenges. There was a third-year taxation course which required me to carry four books weighing 2kg each to every class, and I was always afraid of tripping over. The action of sticking hundreds of post-it notes within the thousand pages of each book for easy reference when needed was very

challenging for my wobbly hands. Still, I finished a Bachelor in Management Studies majoring in Accounting, after six years of study for a four-year degree. “I had always wanted to return to my home town in Taiwan and after completing my degree I returned for eight months.” While there, Joy visited one of her early therapists, now a lecturer, and was asked to talk to students about her

“I had always wanted to return to my home town in Taiwan and after completing my degree I returned for eight months.” - Joy

New Zealand education experiences. Wherever Joy goes her story touches people. A deputy head present in the audience was impressed and offered her a job of research assistant. “I flew back to New Zealand by myself. Ours is a multigenerational family – I live independently in a unit on the same property as our family home. Thanks to my mum’s belief in me, I’m able to do most things myself. I’m close to mum if I need her support, and now I’m an aunty!

with my accounting specialisation and management degree. “I also hope that I will be able to continue to grow in maturity, meet great mentors, and make lifelong friends who will not make my journey so lonely.”

“I’m hoping to find a job in New Zealand where I can utilise my limited strength, and gain some relevant experience

WE PROVIDE MEMBERS WITH ACCESS TO: • • • • •

Physical and emotional support Experience, knowledge and expertise Financial contributions Neuro-developmental Therapy Programs Resources and equipment

Parent to Parent July 2017

Global

NEW LIFE with

NEW LEGS 30

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by FIONA MORRIS cbm

Photos: Ashok Shah, cbm

epalese girl Yamuna is now 15 years old. Born into a poor family, she is one of four children. She’s been treated differently to her siblings and peers in her village community because she was born with a strange growth on her lower back that her neighbours called a curse from God.

Eventually, her feet bent so much that Yamuna couldn’t stand, let alone walk to school. Unable to move around, Yamuna was forced to sit in the dust outside her little family home and crawl to the outside toilet. Gradually, Yamuna’s zest for life faded and she became sad and introverted, unable to play with her friends and siblings.

When a cbm field worker visited Yamuna’s village last year and heard about her condition, he met with her parents and convinced them to travel with him to Kathmandu in the cbm van. Yamuna was assessed by a specialist ophthalmic surgeon but unfortunately by that stage, her feet were so badly deformed that Her feet were so badly both her legs were amputated below deformed that both her the knee.

However, Yamuna was never cursed; she has spina bifida, a condition that she would have been treated for had she grown up in a different country. In New Zealand, Yamuna would have received treatment to avoid serious damage to the nerves of her legs and feet. But in Nepal, the sad reality for Yamuna was that her parents couldn’t afford to transport her to the nearest doctor, let alone the cost of the treatment.

legs were amputated below the knee.

Yamuna lives in a humble fourroomed home on the corner of a field in the village of Hernamadi near Hetauda in the Makwanpur district, about a five-hour drive on very bad roads from Kathmandu. She lives with her parents, three siblings and two other extended family members. Both her parents work as farm labourers with her father often spending long days away from his family during the harvesting season. The nearest water supply is a cold tap over a kilometre away from their home. Because Yamuna was left untreated, her spina bifida led to such a bad ulcer on her left foot that she had lost two toes by the time she started school. Her mother, Lok, remembers that Yamuna loved school. “She was a very bright student but after just a year her feet gradually began to turn inward,” she said.

She was fitted with prosthetic limbs and feet after successful surgery and rehabilitation, and was able to walk again for the first time in years. When she returned home, Yamuna could again go to school and play with her friends and start to help with the family chores. Now, she leads a relatively normal life, able to do most things her friends and peers can.

cbm is an international Christian development charity working with those who have the double disadvantage of living in poverty and with a disability. In 2015 it provided medical services to more than 10 million people in 63 countries. www.cbmnz.org.nz

Parent to Parent July 2017

People

ENABLING GOOD LIVES WAIKATO UPDATE By LOREN CORBETT

n March the Minister of Disability Issues Nicky Wagner announced the transformation of the current Disability Support System. In this announcement, she said the current Enabling Good Lives (EGL) Waikato demonstration would be extended until June 2019. We are really excited about the opportunity to continue working with individuals and families to improve their life outcomes, and over the next two years we will be able to engage with another 60 people a year. At this stage we have a large next intake list, so there is a longer wait for people thinking about coming onto Enabling Good Lives.

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Meet Paul Lawrence, a key member of EGLâ&#x20AC;&#x2122;s Connector/TĹŤhono team: CAN YOU TELL US A BIT ABOUT YOURSELF? Ko Tainui te Waka Ko Hautapu te Maunga Ko Kawhia te Moana Ko Tokopiko te Marae Ko Ngati Te Kiriwai te Hapu Ko Tainui te Iwi Ko Paul ahau

Kia ora, I hail from the mighty Waikato and have been a Connector/Tūhono with Enabling Good Lives for the past 13 months. I’m really passionate about working with people and helping them dream big and realise their potential. Outside of work, my priorities are my family and friends, physical health and wellbeing, holistic health and all sports. I am a season ticket holder at FMG Waikato Stadium and a long-suffering Vodafone Warriors fan. WHAT DID YOU DO BEFORE BECOMING A CONNECTOR/TŪHONO? I graduated with a Bachelor of Applied Social Sciences (Social Work) from the Waikato Institute of Technology in 2009 and immediately set out developing and co-ordinating 20 week programmes targeted at young people who were exempt from school, that incorporated a blend of adventure-based learning, fitness and wellbeing, and education.

For as long as I can remember, I’ve always wanted to help other people, be a role model, and make my family proud.

WHY DID YOU APPLY FOR THE CONNECTOR/ TŪHONO ROLE? For as long as I can remember I’ve always wanted to help other people, be a role model, and make my family proud. When I saw the role advertised, I saw an amazing opportunity to do all of these things on a regular basis, as well as the chance to grow my understanding around disability related issues and the disability sector, act as an advocate for social change, and become a better person in the process. It was a very easy decision to apply, and when I was lucky enough to be offered the role it was an even easier decision to accept. I’m still humbled and feel very blessed to be here. WHAT DO YOU LIKE ABOUT YOUR JOB? Having the opportunity to meet new people every day, and getting the privilege to listen to their own personal journey, share their hopes and dreams for the future and be there for them every step of the way. I get to learn something new every day, meet some wonderfully inspirational people and their whānau, and work within a supportive and nurturing team. I couldn’t ask for anything more. HOW WOULD YOU DESCRIBE YOUR ROLE?

After some time out traveling and following the Rugby World Cup in 2011, I started working with the Ministry of Social Development (MSD), first as a facilitator and case manager, and then as a programme coordinator for two years. My core role was to liaise with the contracted services provided by Work and Income at a regional and national level, as well as local tertiary providers such as Waikato Institute of Technology and Te Wananga O Aotearoa.

The role of Connector/Tūhono is awe-inspiring, challenging and rewarding all at the same time. No two days are ever the same.

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Opinion

Ally Attwell and daughter Tarryn, 16. Photo: Supplied

NZEI Inclusive Communities Through Education Summit New Zealand Education Institute (NZEI) Te Riu Roa Wellington 11-12 May 2017 By ALLY ATTWELL QSM

for over 19 years. The organisation has empowered me to stand up and advocate for not only our whanau/family, but for everyone. This summit was a great opportunity to learn more.

One keynote speaker was University of South Australia research professor Roger Slee who, in my eyes, is one of the gurus of inclusive education. I quickly started to plan how to get myself to it – thanks to Parent to Parent I was able to attend as a representative. I’ve been involved in many roles locally and nationally with Parent to Parent

I’d hoped it wasn’t going to be one of those meetings where we just rehash old stories and not move into action. I arrived to find we had assigned tables, with not only a NZEI member, but a pre-organised leader whose role was to ensure the table kept discussions going. Not that our table leader had anything to worry about – we had a deputy principal from a mainstream school (our leader),

n invitation arrived in my email from NZEI about an opportunity for disabled people, families, educators, Ministry of Education staff and others to come together and talk about how we can make education inclusive.

Parent to Parent July 2017

Panel discussion: Early Childhood Educator Kat McAnelly (L) and Ally Attwell. Photo: Supplied

A number of speakers agreed it was frustrating that people think the answer to inclusive practice is more funding and resourcing. Rachel Noble believed that the ethos of inclusion is like having an extra rib, schools have it or not. Inclusive education relies on more than just money. It’s also about the school’s culture, leadership from the principal and educators, and greater acceptance of diversity in our community. I get very frustrated when I hear they are just focusing on more teacher aides. Yes, we do need more, but there is so much more we could be doing. two parents and two teachers from special schools. What a great combination! The morning began with summit facilitators Dr Bernadette Macartney from Inclusive Education Action Group (IEAG) and Dr Esther Woodbury from the Disabled Person’s Assembly (DPA). I loved how they made us ‘open the can of worms’ – in this case, a bag of worm lollies. The idea was to talk about the hard stuff up front, i.e. special schools’ vs regular schools. This was great, as from this discussion we could discuss what inclusive education means for each of us. Over two days there were a number of speakers from around New Zealand and even Australia; academics, researchers, parents, teachers and disabled people, with many having more than one role. I got so much out of the summit, starting with Roger Slee’s presentation. He spoke about exclusion being in the bones of education and the need to create ‘irregular schools’. He suggested we first bring exclusion into the conversation so it is not hidden in the bones of education. Also, it isn’t just about combining special schools with regular schools, but actually creating a whole new system – in effect, an irregular schooling system that works for everyone. University of Waikato’s Therese Ford provided a link between inclusion and the Treaty of Waitangi. She spoke of Mason Durie and how he believed Māori should be able to live as Māori, just as people with disabilities should be allowed to live with their disability. This reminded me of a conversation I had with my daughter Tarryn who is 16. I’d asked if she had a disability, and she said “No!”. Puzzled, I asked “Do you have Down syndrome?” She said: “Yes but that’s not a disability, I was born like that!”

As a whanau/family we are now thinking of Tarryn’s transition out of school – the reality is, she is not going to have someone with her 24/7, and if she is not given an opportunity to do things for herself while at school, she will not learn strategies to cope on her own. Too many teacher aides hours can potentially lead to dependence rather than independence. Hilary Stace a parent, researcher and disability advocate spoke about the power of parents in our history of disability and the power of language; that Government views us as irrational parents who want more. We may want more, but we know what we are fighting for! The summit was closed off with a call to action; we had to let the group know what we planned to do in the next week, next month and next year. So, my goal – after the political session – was to talk to all our local MPs, which I have started. The second goal was to write this article. I now ask you, the reader, to make an appointment with your local MPs so they can hear your stories. They need to hear the good and the not-so-good stories. It is election year, so this is our chance to make a difference!

Ally Attwell, mother, academic, lecturer and activist. DipBus, from Universal College of Learning (UCOL), BA Linguistics, from Massey University, GradDip Tch (ECE) from University of Canterbury. Founder of Voice Thru Your Hands (2007-2017), member of Parent to Parent for 19 years, is also an active member within the disability sector. Ally works at UCOL as an Early Childhood lecturer while studying towards a Masters of Education (Special and Inclusive Education) at the University of Canterbury.

Parent to Parent July 2017

Tribute

Photo courtesy of Fairfax Media NZ / Dominion Post

Alexia Pickering JP, QSO, CNZM

“My parents gave me a wonderful gift … they treated me just like the rest of the family. This was a great blessing and a big help setting me on my path to be as independent as possible.”

ew Zealand activist Alexia Pickering died on 27 April 2017 in her 87th year. Alexia was born with spina bifida in Petone in 1930. Using a wheelchair and refusing to let disability limit her life, she excelled at school, sang on National Radio in her early 20s, married and raised four children. She became vocal about disability access issues as a mother who found access into places such as Plunket, kindergartens and school teacher meetings sometimes impossible. After her husband Neville became a Labour MP and later Mayor of Christchurch, she was often prevented from taking her place beside him at functions that were up stairs with no disability access. Alexia became recognised as one of New Zealand’s leading experts on access for people with disabilities. Neville passed away in 1988, and she remarried George Matthewson in 1999.

Parent to Parent July 2017

Through Accessible Options, which she set up in 1993, she worked for decades nationwide, consulting and advising to ensure appropriate disabled access and parking for buildings so they were accessible for Kiwis and travellers with disabilities. She wrote the book Accessible New Zealand. In 2005 she was made a Companion of the New Zealand Order of Merit for services to people with disabilities and the community, and an honorary life member of CCS in 2015. 2005: “While it is an honour to receive an award, raising children has been my greatest achievement … A person with a disability is not expected to lead a normal life. No one expects you to get an education, go to work, let alone get married and then to have the responsibility of caring for children.” Alexia was a remarkable woman, wife, mother and grandmother, who was passionate about music, the environment, and advocated tirelessly for a more accessible New Zealand.

Welcome

New Faces

Jo Eastwood – Executive Manager

Parent to Parent congratulates Jo Eastwood, recently promoted to Executive Manager at national office. Jo is passionate about providing the right tools to help people with disabilities and health impairments live the lives they choose. With a Diploma in Comprehensive Nursing (1989) and working as a Registered Nurse in Australia and New Zealand, Jo met her desire to help people. To develop her skills further she completed a Bachelor of Social Science with a major in psychology in 2001 and became a member of Golden Key International Honour Society for outstanding scholastic achievement and excellence. This led her to Waikato DHB as an Accreditation Facilitator where she gained

experience in facilitation, quality processes, policy development and change management. When this fixed term contract ended, Jo was asked to apply for the Continuous Quality Improvement Facilitator role, extending her skill set to include, managing contracts, HR, project management and relationship management. After taking a short break to add to her family, Jo started with Parent to Parent as an Information Officer in October 2014, moving on to becoming the Team Leader for its Support and Information Team in August 2015. Jo is excited to be taking up this new role and hopes to add to the amazing work already being achieved within Parent to Parent.

Don Martin – Northland Regional Coordinator Don’s career in the disability sector began with a Social Work degree after a history of fostering through CYFS. “My first postgraduate work was with CCS Disability Action working in vocational support.” Then, as regional Halberg Trust Sport Opportunities Advisor, he developed values, ideas and skills. “Key to this role was my work with families, sports organisations and schools to develop meaningful inclusion action plans, and advocate for an inclusive community.” A sideways shift within the sports trust saw Don developing ideas through research, staff training and strategic planning, and then managing a private

sector workshop with a new Enable contract to repair and modify equipment for people with impairments. This involved working closely with families, adults, OTs, physiotherapists, and Don says it was very satisfying. “As a volunteer I became involved in the Fulton Hogan Basketball League where, after five years of player coaching, I led the development of the Inclusive Sport Trust and was the inaugural chair.” Don and his wife moved to Northland to restore a pre-1900 school building. “Gaining work in a new location is always a challenge, and I’m very excited with Parent to Parent, my new role, and the support the organisation gives to families.”

Parent to Parent July 2017

Win dinner for two in the Dark With Dans le Noir? - New Zealand’s only blind dining experience

HOW TO ENTER 1

Take a photo or selfie with your dinner in the dark (candles, flashes, torches allowed - be careful with open flames!)

Upload your photo to your favourite social media with the hashtag #dineinthedarknz

Judges’ favourite wins!

Competition is dinner or lunch for two at Dans le Noir? in Auckland. Can not be used in conjunction with any other offer. Winner drawn August 7 and notified the same day. Judges’ decision is final and no correspondence will be entered into. Photos may be used by Parent to Parent New Zealand Inc for promotional purposes. Winner must be able to transport themselves to the venue. Open for dinner Thursday to Sunday 6:30pm-8:30pm. Open for lunch Saturday and Sunday 12:30pm. See www.auckland.danslenoir.com for menu options and other information. Bookings essential. Terms and conditions may apply.

* Read more about Dans le Noir? on P2

www.auckland.danslenoir.com

164497

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