Parent to Parent September 2016 Magazine

parent TO PARENT MAGAZINE • SEPTEMBER 2016

Catching Pokemon Reflective street art Growing Toby Accessible holidays

Connecting parents Parent to Parent is a nationwide not-forprofit organisation formed in 1983 by parents and professionals to support the families of children with disabilities and health impairments.

After 10 days of competition, on September 18 the New Zealand team finished competing at the Rio Paralympics on top of the per capita medals table, according to Statistics NZ.

Thirty three years later, its 11 branches nationwide help families get through tough times, and encourage and empower them to think big, have hope and create meaningful everyday lives for the whole family.

For gold medals alone, New Zealand’s team won the equivalent of almost two medals per million population (1.99), almost twice the rate for second-placed Latvia, on 1.01 gold medals per million.

Free and confidential, its two main services are the Support Parents connection and providing information.

At the final count, New Zealand won nine gold, five silver, and seven bronze medals.

Support parents: Having contact with another parent who has ‘been there’ can make all the difference. Parent to Parent connects parents with a trained Support Parent who has a child with the same or similar condition, or who has experienced similar issues. More than 600 Support Parents nationwide offer practical ideas, solutions and lend a listening ear. This service is unique to Parent to Parent; by supporting parents through their challenges, they can focus on the gifts, skills and strengths of their child, and foresee a bright future.

Information: Parent to Parent’s researchers offer free information on over 3600 conditions; easy to understand information tailor-made for each child – for the child’s whole family, early childcare learning centres, schools, workplaces and any organisation that works with, and for, people with disabilities and health impairments.

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New Zealand’s per capita gold medal haul was more than twice that of Australia, on 0.92 gold medals per million, it said.

Picking up a total of 21 medals, the NZ Paralympics team beat its target of 18 medals, set before the games began.

The 21 medals is the equivalent of 4.64 medals per million population, placing New Zealand ahead of the Netherlands in second place (3.66 medals per million) and Australia in third place (3.38).

David’s grand design David Creighton-Pester is a branding, print design and illustration whizz based in Hamilton, New Zealand.

He has been contracted by Parent to Parent NZ for the past 10 months to provide graphic design for its posters used by regional coordinators nationwide to promote their events, this magazine, and the Altogether Autism Journal.

He was therefore the obvious choice to approach to design the organisation’s new logo, and came back with the winner within a week.

David also owns and creatively directs his graphic design company Scorch Design, in operation since 2009. He holds a Bachelor of Computer Graphic Design from the University of Waikato and Wanganui Polytech.

Now, as an adult and father, David is inspired by picture books, animation, and still spends hours drawing crazy characters and coming up with silly stories. He is passionate about illustrating for children, especially picture books, and is particularly excited by the opportunity to bring fun, imagination, and fantastically silly scenarios that expand the realms of reality to kids around the world.

David is an Society of Children’s Book Writers and Illustrators (SCBWI) member and enjoys basketball, eating pie and stories about bears that steal picnic baskets.

You can view more of David’s graphic design work online at www.scorchdesign.co.nz or his illustration work at www.wanderingbert.com

@parent2parentNZ

Editor: Sue Pairaudeau Graphic designer: David Creighton-Pester, Scorch Design Cover: William Murray, by Michael Smith

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ISSN 2463-3631 (Print) ISSN 2463-3585 (Online)

0508 236 236

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Rio Paralympics: NZ goes out on a high

Copyright: Seek permission from the editor for the whole or part reproduction of any contents in this publication.

Disclaimer: The views and opinions expressed in this publication are those of contributing writers and not necessarily those of Parent to Parent NZ.

PARENT TO PARENT MAGAZINE • SEPTEMBER 2016

It’s been a big year This time last year we had almost wrapped up facilitating nationwide focus groups to hear what you had to say about our brand, specifically our logo. Everyone who participated contributed to what we call “qual research” (qualitative), and your response was exceptional.

We now have a new logo, to be officially launched at our national training/AGM in Hamilton on October 1416. Designed by someone who knows us well – graphic designer for the past 10 months David Creighton-Pester (story p2) – it is an exciting regeneration for us.

Although we’ve been in NZ for 33 years, when people say they’ve never heard of Parent to Parent, we’re reminded of why we need to crank up and get out in communities for the families we can support. That’s our challenge with our new eye-catching logo.

A big thank you and thumbs-up to all those (mainly mums) who completed our survey and are in to win a $100 Prezzy Card. Your input and comments are so very much appreciated. Collectively you’ve told us we’re evolving along the right path – we’ll share those results in the next magazine – but we have only just begun on this journey so watch this space. If you haven’t yet filled out the survey, which asks a few details about you, our organisation and this publication, you have until the end of the month to be in to win.

Parent to Parent NZ also thanks Hamilton journalist of 25 years Geoff Lewis. He stepped in this year when we didn’t have a staff writer, connected with some amazing people and shared their stories. Journalists like Geoff tell it like it is, with integrity, photos included.

Contents 4 The boy who went

outside to play …

Denise Ives 6 Family atmosphere at

limb centre

Geoff Lewis 7 Song raises awareness

of autism 8 Looking beyond the box

Kristy Robinson 11 Buddies and butterflies 12 Bonus package

provides challenge

Geoff Lewis 14 Double disadvantage of

poverty and disability

Tony McLean 16 Tegan takes time to travel

Geoff Lewis

By the time you read this we will be close to replacing the role of communications advisor. They will be super ready to write inspirational stories about real-life parenting and people living with a disability anywhere in the country. Feel welcome to contact us, and if you have a unique journey to share, it could even be yours!

17 Accessible holidays

Kimberly Graham

Sue Pairaudeau Business Development Manager Parent to Parent New Zealand

20 Understanding EGL

Loren Corbett

18 Voice for members

Erika Butters

21 Sign up for inclusiveness

The new Parent to Parent NZ logo will be launched on Sunday October 16 in Hamilton at the Distinction Hotel and Conference Centre. Regional coordinators, support parents and other members will join national office staff in Hamilton for a weekend of training and the AGM, followed by a lunch to celebrate the logo launch

WIN!

Watch this space Be in to win a $100 Prezzy Card by answering our magazine survey questions on our website’s magazines page, where you can also view past issues. Alternatively, contact us to have it emailed or posted to you.

The survey runs until the draw on Friday September 30.

William Murray, 12, has started to expore the outdoors thanks to Pokēmon Go. This photo session in the Botanical Gardens, Dunedin, just got better for William – he has an interest in photography and ‘clicked’ with our photographer who is now mentoring him.

Photos: Michael Smith

The boy who went outside to play

By DENISE IVES

Let me tell you a bit about William. He’s 12 years old and was diagnosed a year ago. We’ve known for a long time that something was different about our boy, and he’s felt it for a long time too. From around the age of five or six he was telling us that, if we understood how difficult it was for him to be himself, we’d know why he thought life was so hard.

We were told he was sensitive and offered parenting classes, and his GP told us many times he was fine, as he’d seen him with other kids. Eventually it all got too hard for William and he started threatening to take his life, and behaving in ways that would cause himself harm. We changed GP and got an urgent referral to pediatrics, where he was immediately diagnosed with ASD and anxiety.

At this point he just about shut down. This year we started to homeschool.

William’s safe place is his room. The only thing he feels good at is his online computer games.

He doesn’t like to leave those places. He has very low self-esteem.

Then he found Pokēmon GO! This isn’t a story of a boy who started walking 50km a day looking for Pokēmon, but it is a success story. From a boy who didn’t want to go out, who didn’t like walking around much, and who definitely didn’t want to talk 4

PARENT TO PARENT MAGAZINE • SEPTEMBER 2016

to complete strangers, we saw a boy excited about where the next Pokēmon was, what CP each one is, and talking to people at Dunedin Botanic Gardens about how the game works – complete strangers!

He was thinking about where to go next – and actually asking to go out. He went out with a couple of local children looking for Pokēmon. Thankfully it hasn’t become so much of an obsession that we have meltdowns if we can’t go somewhere for that rare Pokēmon that pops up every so often, but it gets him out of the house, interacting with the occasional stranger, working out where he is on the map, and thinking about how far he needs to walk to hatch his eggs. All in all, I’d say it’s a win!

When I asked William what he thought the best thing was about Pokēmon GO! he said: “I like Pokēmon because it’s a fun but good way to get outside and do exercise. I’d definitely recommend it to other autistic people.”

Denise Ives has a background in teaching adults to use computers, IT project management, and recently took a certificate in teacher aiding, working as a teacher aide at a primary school. She is a full-time home educating mum to William, and also has a 22-year-old son and an almost twoyear-old granddaughter. Denise founded the charity The Breast Room in Dunedin, which provides free one-to-one counselling and support to breastfeeding parents.

“He was thinking about where to go next – and actually asking to go out. He went out with a couple of local children looking for Pokēmon.”

How to parent a Pokémon trainer Many kids today are suddenly keen on spending more time outside, thanks to Pokémon Go. The new smartphone app has changed video gaming and, with just a few watch-outs, is an active way for them to get their digital fix.

What is it?

So your kid’s triumphantly run into the house telling you about the Golbat they’ve caught outside. Don’t worry, it won’t ruin the house. Remember the TV show, trading cards and Nintendo games from the ’90s and early 2000s? Pokémon are quirky little ‘pocket monsters’ out of hibernation and in the real world on smartphones.

How does it work?

•

The goal of Pokémon is to ‘catch them all’.

Kids can find and catch Pokémon using their smartphone, with the goal of becoming a Pokémon master. There are over 200 to catch.

•

What really made Pokémon Go take off is augmented reality. Pokémon used to stay in the digital world, but thanks to this new tech the little creatures are hanging out on our streets, parks and beaches. If your kid is uncharacteristically eager to visit an art sculpture, it’s probably because there’s a cartoon monster lurking in the area that they can catch.

Tips for Poké parents The usual ‘stay safe’ rules can go out the window when kids are lost in Poké world. So here are a few tips and watch-outs: 1. Eyes up while Poké hunting, especially around roads. Remind kids of the road rules.

2. Don’t let them go alone. Young Poké players can be easy targets for risky strangers.

3.

Watch out for in-game purchases. Although Pokémon Go is free to download, the game allows people to buy digital items to level up – sometimes too tempting for competitive kids.

4. Set a time limit to make sure they are getting a healthy balance of real world and Poké world.

5. For teens, never let them Pokémon Go and drive.

Make a family digital contract.

6. Check out the game yourself. Your kids will love to share their Pokémon collection with you. Downloading the app and catching a Pikachu or two yourself can be a great way to have family adventures.

Extracts from Vodafone’s digi-parenting.co.nz site.

• The more steps they take in the real world, the more Pokémon they are able to locate and hatch, so there’s an opportunity to keep kids active.

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Family atmosphere at limb centre

By GEOFF LEWIS Hamilton’s Artificial Limb Centre’s staff and patients are like family – they get to know each other for life Located on Pembroke St opposite Waikato Hospital’s Emergency Department, it is the Midlands branch of the New Zealand Artificial Limb Service, Peke Waihanga, Aotearoa. While closely associated with the Waikato DHB and ACC, the service is a crown entity which comes under the Ministery of Social Development and has its own six-member national board.

Midlands regional manager Laura Hillas got into prosthetics – making and fitting artificial limbs – because she enjoyed biology and wanted to do

something with her hands. Trained at the University of Strathclyde in Glasgow 14 years ago, she arrived in New Zealand in early 2015.

Covering the needs of amputees throughout the central North Island, the centre’s team is a busy mix of nationalities which, Laura said, brings skills and experience from all over the world. There is no longer a training facility for prosthetics in New Zealand; the nearest is a four-year degree at La Trobe University, Melbourne. Prosthetic technicians often learn on the job and a formal qualification is being considered, Laura said.

“These people have an incredible level of skill and we are in the process of having that formally recognised and hoping to work with the University of Strathclyde. People train in different ways around the world. In Britain people go to university to study prosthetics, while in Germany technicians train on the job to become prosthetists. These are different approaches and both have their merits.”

The Artificial Limb Centre has its own workshops, with New Zealand’s lifestyle creating unique challenges for technicians.

“It’s about who we are presented with. In the UK people lead much more sedentary lifestyles,” she said. “In New Zealand, the lifestyle is much more outdoors. If the manufacturers of the components that go into artificial limbs want to know how a piece of equipment will stand up to hard use, they should send it here.”

The reasons people need an artificial limb include congenital (birth) defects and road and industrial accidents. Of the 988 patients catered to by the Hamilton centre, 581 come as a result of injury, 268 as a result of vascular disease and diabetes, and the remainder a combination of infection, tumour and congenital reasons.

“Those who are funded through the health budget tend to be older and have other health-related complications, whereas those funded by ACC

Midlands Artificial Limb Centre regional manager Laura Hillas in the prosthetics workshop.

Photo: Geoff Lewis 6

PARENT TO PARENT MAGAZINE • SEPTEMBER 2016

tend to be younger and have fewer health-related complications, but we see all ages from babies to the elderly.

Continued on next page

Song raises awareness of autism Auckland teen Kane Chong, 16, wrote the song We Are One for a school project, with the hope of changing the way people think about autism spectrum disorder (ASD).

It affects 77,500 New Zealanders, one in 58 people.

He was inspired by his lifelong friend Connor, who is autistic. Their fathers have been friends since age 15.

The song caught the attention of mentor Mike Chunn CNZM, of the Play it Strange songwriting competition (and former Split Enz and Citizen Band member).

“I was really taken by his passion and his enthusiasm for recording and promoting We Are One, so I’ve pulled some strings ...”

Mike enlisted fellow Kiwi musician Jordan Luck (The Exponents) to lend his voice, and the track was recorded and mixed at Neil Finn’s Roundhead Studio in Auckland last month. Kane also enlisted the help of other students who study music at ACG Parnell College to sing the chorus.

“I believe, like all musicians,” Kane told Fairfax Media, “that music is powerful and the healer to a lot of the world’s problems.”

Continued from previous page “We are responsible for the making and fitting of artificial limbs, however, losing a limb is a big wakeup call. We understand the importance of looking after the good limb, especially those with diabetes.

We are trying to build our association with orthotics – the making of external devices designed to support the good limb – with possibly the co-location of services in Hamilton.”

The biggest challenge in fitting prosthetics is working within people’s capabilities with the aim of meeting their needs and expectations, Laura said.

“We have 988 patients on our books, most of whom are with us for life. People grow and change shape and their prosthetic limb suffers wear and tear depending on their lifestyles.

“Some like to run or swim with their artificial limb.

Whatever people want to do, we do our best to meet their needs. The socket is custom-made to fit the patient’s stump. The rest is like a Meccano

CLOSE MATES: Connor Chinn and Kane Chong.

The song gives the message that it is OK to talk about autism, with the chorus “We are the voices of the voiceless, for the ones standing in the shadows”.

All proceeds from We Are One, available on iTunes and other online music sites, go to Autism NZ.

set, put together from parts ordered from suppliers according to the person’s weight and lifestyle.”

The centre puts a lot of effort into prevention and patient care.

“A lot of people will come in with one remaining good leg and need to look after it. One of the effects of diabetes is that people lose sensory perception and they don’t feel injuries. A lot of people come in without shoes and if they have diabetes, once they have an injury it can take a long time to heal.”

After a decade and a half in prosthetics Laura still finds the career a thrill.

“Every week I’ll get that goosebump moment when I’m so proud for a patient, and the same the other way if things don’t go to plan. You live with them; they almost become part of the family.”

Geoff Lewis has been a journalist for 25 years with Hamilton Press, Waikato Times and Motortimes.

He now works as a freelance writer for various Waikato organisations and publications

PARENT TO PARENT MAGAZINE • SEPTEMBER 2016

7

Looking beyond the box

By KRISTY ROBINSON

Normal. That’s not a word that has ever described me.

I don’t tend to subscribe to categorisations, labels and boxes, but “normal” is a weighty word we are regularly measured against. I suppose people don’t tend to realise that they measure others and put them in boxes until they’ve had an experience with one themselves.

My latest work of art is called The Box. It’s a public art project about looking beyond the box to see the person inside. Last March I took the box out to public spaces around Ōhope and Whakatāne to see how people would respond to and interact with the installation.

Some people didn’t see it at all – being made of mirror and reflecting its surroundings, The Box was almost camouflaged in certain environments. Others simply viewed the piece as an object, not realising there was much more to it. Some people took the time to try and figure out what it said, and others just got in there and connected with the piece without overthinking it and trying to work out what it means.

It ended up being a social experiment as well as an art installation, and I’ve really enjoyed the varied responses and conversations that have arisen from exposing the piece to the public.

I am used to varied responses, as an amputee. I was born with a congenital deformity and became an amputee at 15 months of age. I grew up having a different body, and for many years I didn’t want to be different. I tried my hardest to hide the fact I had an

Kristy will be taking The Box on a North Island tour this summer. To find out more about the project and if it’s coming to a town near you, visit www.theboxartproject.com, or like and follow the Facebook page www.facebook.com/theboxartproject.

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artificial leg, and in certain circumstances that was easy. I could wear tights, skirts below the knee and trousers to cover up my leg.

I also worked hard to cultivate a limp-less walk every time I visited the Limb Centre to have repairs or get a new leg. I became very practised over the years as my prosthetist, Claude, would assess my gait as I walked up and down the runway, and make adjustments to help refine my strut.

Claude had been my prosthetist from the time the Hamilton Limb Centre opened in the early ‘80s.

For over 30 years now, the Limb Centre, Hazel (the receptionist) and Claude have been among the most constant and familiar landmarks in the ever-changing landscape of my life. My parents divorced, most people I know no longer live in the same house (or town), but my Limb Centre family hasn’t changed.

Claude recently hit retirement age, and cut back his hours. With that he had to assign some patients to a new prosthetist – and I was one of those. While it was lovely to meet my new prosthetist, I felt nervous about having someone new handling my leg and taking a cast of my stump.

It was then I realised that having my cast taken was rather an intimate experience – having a stranger touch a part of my body that is just as private as my private parts was surprisingly challenging!

Most people don’t realise I have a prosthesis, until something happens to bring attention to it. I remember the day my good friend’s mother saw my leg for the first time. She had known me a number of years, and it just happened to be April Fool’s Day

Support Parents

The Box in Wharaurangi, Whakatane

when she noticed. She honestly believed we were playing a trick on her, and was shocked when I took off my prosthesis and showed her my little leg.

As funny as it seems now, I was mortified at the time to be the centre of attention, and thought I was going to get into trouble for breaking my leg.

I myself forget I have a disability until someone brings it to mind, or something goes wrong – like the time at primary school when I was playing “duck, duck, goose” at lunchtime. I had just been tagged goose and was running to catch the head patter, when suddenly it felt like I’d stepped in a hole. I took another step, and again, my right leg felt shorter. It took a few moments to realise my foot had fallen off and I was running on a footless leg.

Another experience was walking home from school at the age of six, when some older kids approached me. They were curious about my leg and wanted a closer look.

Being the people-pleaser I was back then, I reluctantly took it off and handed it over for them to examine. They ran off with it across the field and disappeared down the road.

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I didn’t know what to do. I sat down, folded my legs under my skirt so people wouldn’t see my footless leg. I couldn’t go looking for it myself, so I just sat – powerless – stuck between needing help and not wanting to draw attention to my vulnerability.

It must have been such a traumatic experience that I blocked it from my memory for many years until I was at high school and my sister’s friend asked: “Do you remember that time at Glenview Primary when those kids nicked off with your leg?”

Wham! The memories came flooding back. Sarah and her friends had found me, and I had started to cry, but managed to blurt out through the tears what had happened. They consoled me, and one stayed while the others went to find it. I sat there worrying that my leg would be gone forever, and how much trouble I might be in for letting someone take it. The heroes returned triumphant with my precious limb. They found it dumped in a ditch on the other side of the field.

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Experiences like that – where I felt judged, belittled and disempowered for not looking normal – were a major source of inspiration for The Box. Thankfully now I have learned not to worry so much about what people think about how I look.

When people judge me by my outward appearance (whether it’s negative or positive), it says more about the depth of their character than it does about me and my value.

I now know my value, and am grateful that there are so many amazing people in my life who look beyond my box and can see all that I am.

Kristy Robinson has a background in visual arts, education, broadcasting/media, and in the social sector. She has a Bachelor of Media Arts, has tutored visual arts and radio broadcasting at tertiary level, and hosted creative programmes through Community Led Education. She is also a Tech Pā youth mentor, an Arts Whakatāne committee member, and mum to Eli, 14.

Buddies and butterflies Thanks to funding from Calder Stewart, Parent to Parent Southland regional coordinator MaryAnn Hughes took a bus of Invercargill kids and their family members to the Otago Museum in Dunedin in July.

Photo

s: Mic

hael S

mith

the Tropical Forest, the only three-level live butterfly experience in Australasia.

The bus toured around Dunedin with a running commentary of sights and history provided by the driver, then stopped in Balclutha at the world-famous Peggydale, for hot chips and ice cream.

Museum staff provided a space called ‘The Friends Room’ where everyone had lunch and could use quiet time out at any point.

The Southland families were treated to hands-on and educated play at Discovery World and checked out the weird and wonderful creatures in the Animal Attic. The highlight was having exotic butterflies land on them in

MaryAnn thanks Calder Stewart, McDermott’s Coachlines, the Otago Museum, Peggydale, and photographer Michael Smith for their generous support.

PARENT TO PARENT MAGAZINE • SEPTEMBER 2016

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Bonus package provides challenge for older parents Tim and Jacquie Dale have two daughters, now in their early 20s, but what they didn’t expect in their 40s was a bonus package – two in fact – twin boys Toby and Finn.

By GEOFF LEWIS The later-in-life blessing came with a hiccup that has steered the direction of their lives ever since.

Originally North Shore-based, Jacquie is a trained nutritionist and Tim has a degree and tutored in business management. Together, they built a thriving health food business. Then Jacquie, a few years older than Tim, and a foodie columnist for Sunday Star Times, conceived at age 45.

Early scans of the developing babies showed all was not going to plan. One fetus was developing at the normal rate, while the other was far slower. The boys were delivered three months premature with Finn weighing 1350g and Toby a mere 480g – about the size of a block of butter.

Finn was discharged from Auckland Hospital’s Neonatal Intensive Care Unit after three months, but then re-admitted to Starship.

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Toby was one of the smallest babies to survive and had heart surgery at only 900g. Jacquie said he was such a mass of wires and tubing he could barely be seen. She spent 400 days between the boys, rarely getting more than a few hours sleep a day.

The couple say the stress was enormous and forced them to wind their business down and move to more affordable Hamilton. Tim took up an 80-hour-a-week job as manager on a dairy farm, and four years later has recently become manager of a welding gases distributor, much to his relief.

At age three, Toby was diagnosed with RussellSilver Syndrome, a form of dwarfism. The condition is characterised by a failure to thrive; his stomach and gut muscles were underdeveloped and he had no appetite. Fed a diet of calorie-rich food through a tube directly into his stomach, he would often vomit and his parents were concerned he would develop a psychological aversion to food.

Early on in the journey, the Dales were helped by Parent to Parent Waikato.

and medication information, and within a day he’d stopped vomiting.”

“Parent to Parent provided us with a lot of information about Russell-Silver Syndrome when we needed it,” Jacquie said.

Toby started on growth hormone at age four. It works on all muscles with rapid effect – he suddenly had an appetite and started to gain weight and strength.

Hope arrived when she met another mum who had a 16-year-old son with the same condition.

Human growth hormone is not funded by the New Zealand health system because Toby was always slightly over the maximum height allowed – although well short of his twin.

“She had taken him to an American specialist and she helped put me in contact with the Magic (Major Aspects of Growth in Children) Foundation. This led me to a three-day conference in Chicago in 2014, which covered all sorts of growth disorders and was all about kids like Toby. The Magic Foundation is an international organisation associated with New York pediatrician and endocrinologist Dr Madeleine Harbison.

“She [Dr Harbison] recommended the use of growth hormone and sent her notes to Toby’s pediatrician at Waikato Hospital, who was great, but needed more information. She helped us with feeding

The Dale’s health insurance covers about a third of the annual $9000 bill, and they cover the rest. This essential treatment must continue until he reaches puberty if he is to have a chance of gaining average size.

The twins are now five-and-a-half years, and while Toby is still feeding through his ‘Mickey Button’, he also eats food. Because he is able to digest food, he is stronger and his health has improved.

The brothers go to a rural school near Hamilton where Toby has help from a teacher aide, for special feeds, and he is keeping up at school.

Tim and Jacquie Dale with their five-year-old twins Toby, left, and Finn.

Photos: Geoff Lewis

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International Links

Supporting those living with the double disadvantage of poverty and disability Indonesia: Tony McLean met Rully and his mother at the local Disabled Person’s Organisation in Kulon Progo.

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By TONY McLEAN For more than 23 years I’ve been incredibly blessed to have worked in a wide variety of paid and voluntary capacities with people who society has largely excluded, or simply pushed to the margins. Many of these contexts have brought me face-to-face with the impact that disability has on individuals, families, communities and society as a whole.

I have held a variety of roles in the disability support system of Aotearoa New Zealand and am currently the community development manager at Imagine Better, an organisation that partners with people living with disabilities and their families as they imagine, plan and go after good things in life.

How I heard about cbm My first encounter with the cbm New Zealand team was in 2011 at a conference in Wellington.

I knew instantly that this was a group of people committed to and passionate about making the world a better place for people living with a disability and their families.

That day, I heard the heart of people who understood the significant challenges ahead and with infectious passion called others to the realities of the poorest of the poor and the double injustices of disability (especially preventable disability) and poverty. I signed up as a volunteer the very next week.

Joining the board

Kulon Progo: Tony McLean with Suryati, a local Indonesian entrepreneur whose small business loan from cbm enables him to purchase chickens from local farmers with disabilities and sell them at market.

Trip to Indonesia Last May I was incredibly fortunate to travel to one of cbm NZ’s programmes in Kulon Progo, Indonesia, with its international programmes manager Linabel Hadlee and the programme team. The purpose of the trip was to undertake a detailed and comprehensive evaluation of the work we have been supporting there over the past five years.

To personally see the impact on real people’s lives was an incredibly humbling experience for me. This single programme which focuses on micro finance and micro business development has fundamentally changed the lives of hundreds of people. I was able to meet many of them, talked with them (through interpreters) and receive their thanks and gratitude.

• Tony McLean is a senior manager at ImagineBetter, a national NGO focused on social change, and a board member of cbm New Zealand.

In early 2015 I was approached about joining the cbm NZ Board. It was a real honour to be considered for such a role and one that was accepted with a deep desire to add to the wonderful work of all those that have gone before.

My first 12 months have been a steep learning curve. cbm NZ is such an incredible organisation to be a part of, so small on the global stage but one that contributes significantly to the lives of thousands of individuals in some of the world’s poorest countries. Deepening my understanding of just how effective cbm NZ is at practically assisting the poorest of the poor has only fuelled my fire for us to do more.

cbm is an international Christian development charity that seeks to support those living with the double disadvantage of living in poverty and with a disability. It provides diversified services where needed most in the areas of eye care, ear health, livelihoods, education, rehabilitation, neglected tropical diseases, advocacy and emergency response. Last year it provided medical services to over 10,500,000 people across 63 countries.

To find out more visit www.cbmnz.org.nz

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Travel

Tegan takes time to travel

By GEOFF LEWIS

America is a big place, Tegan Morris discovered while attending the annual VidCon Conference in Los Angeles in June.

Tegan, 28, lives in Hamilton and has muscular dystrophy, which has seen her wheelchair-bound since childhood. However, she has a range of interests including making weekly YouTube video presentations.

She was keen to attend the huge conference, but travelling with her disability is a challenge and most of her regular friends and support people were not able to make the journey.

Tegan has direct funding through the Individual Support System, enabling her to employ six support workers, rostered to help her full-time. As she lives near Waikato University, many are students found through Student Job Search.

Undeterred, she made a call for young women who would like to attend the conference and help her – she found four.

In June, Tegan and her helpers undertook the 11.5hour flight to California via Air New Zealand. When she left Auckland it was 11°C; Anaheim, where the convention centre was located, was about 30°C. “The Anaheim Convention Centre is a huge complex.

There are two massive buildings that make up the main centre with exhibition halls, meeting rooms and outside stages,” she said.

“This year there were three types of tickets covering those interested in video creation for YouTube, those creative arts people like me who are interested in video creation, and an industry pass for those interested in film-making and social media. There were a lot of big names.

“The conference is very well-organised. There were sections on video creation and graphic design, and a new section on fashion, beauty and makeup. I made a number of contacts in the disability community because, for the first time, they gave a spotlight to creators with disabilities. I hope to be able to do some internet-based collaboration via Skype. It was the first time I’d come across people doing video on a weekly basis like me.”

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SPOTLIGHT ON CREATORS: VidCon showcased creators with disabilities for the first time, and Tegan Morris was there to meet them.

During the three-day conference the group stayed at a nearby hotel. However, they also wanted to explore the area, and through AirBnB, an international company that connects travellers wanting short-term accommodation with property owners, they hired a house.

“We stayed the first five days in the hotel and then moved to the house for the next two weeks. It was 45 minutes’ drive away. It is very hard for someone from New Zealand to get a sense of the distances.”

The group used the local public transport system, buses and the metro train. Most were designed to be wheelchair-friendly, and transport was cheap with the average fare about US$1.

On return to New Zealand, Tegan had an official launch for her book Not Always Lost at Iguana in Hamilton and sold about 60 copies.

“I’m working on an idea for another book; this time a more factual and practical guide for young people leaving home focusing on practical information and skills.

“It’s a big project and I’m hoping to find sponsors so I can have a writing or research assistant. I’m in the early stages and looking at what companies I could approach and to see if it would be viable,” she said.

Have you booked that summer holiday?

Hi there, my name is Kimberly Graham from Oyster Accessible Travel NZ. I’m a parent to Finlay, 11, a wheelchair user with cerebral palsy; Rosie, nine, and Lachie, five.

September is usually the time I start to think about the big summer holiday and Christmas, however, even now I find a lot of my desired accommodation already booked out. This is the issue for families in general, but even harder for those of us who need ‘accessible accommodation’, ‘things to do’ and ‘specialised transport’. Realistically, in New Zealand we need to be booking a year ahead for the summer school holidays. Obviously, this is the last thing we feel like thinking about so early on.

Finlay is only going to get bigger. Bumping him up and down steps is no longer an option. We need the roll-in shower (with shower chair), good ramping and an accessible vehicle. We are also a family with three children, different ages with different interests.

Finding accessible things we can all engage in can be a mission. We love walking and tramping, so finding accessible walks takes a bit of research.

Having experienced the time-consuming element of planning a holiday with accessibility in mind, I decided to start up a travel resource for the traveller with reduced mobility. A one-stop shop where we could find everything we needed in one place. So along with Maddy Widdowson, we created Oyster Accessible Travel NZ. Oyster is also a booking platform that can help spread the word about the need for access for everyone. We are getting wonderful feedback from travellers both domestically and from overseas who are finding it a valuable resource already.

Feedback is essential for Oyster. Sharing your travel experiences helps everyone who values good accessible accommodation and activities.

Here I have included my six favorite accessible attractions that all the family can enjoy: 1. Museum of New Zealand Te Papa Tongarewa, Wellington 2. Auckland Zoo, Auckland 3. West Coast Treetop Walkway & Café, West Coast 4. Puzzling World, Wanaka 5. Huka Prawn Park, Taupo 6. Pancake Rocks, Punakaiki, West Coast Oyster includes photographs and information on accessibility for everything listed to help you plan your break away: • Accommodation • Transport • Equipment Hire • Accessible Walks • Activities.

We also have all CCS Holiday Houses listed on the site. These houses provide great discounted options. Again, it pays to book well in advance.

Check us out to help you plan your trip away. www.oysternz.co.nz email info@oysternz.co.nz and like our Facebook Page @oystertravelnz Have a great holiday!

Travelling with a disability Planning a trip in NZ or overseas? Call Parent to Parent for a wealth of travel resources to help make the experience enjoyable whether it’s by air, sea, train, car, van, bus or cycle! We have information to assist people with all disabilities – from on wheels

or with health impairments, through to the unseen such as autism. We also have information on smart planning, accessible accommodation, regulations, codes and human rights.

0508 236 236 PARENT TO PARENT MAGAZINE • SEPTEMBER 2016

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Voice for members

and another set of eyes and ears

By ERIKA BUTTERS PAT National Administrator The Personal Advocacy Trust Incorporated (PAT) was established in the late 1960s primarily to provide future friendships and personal advocacy for people with intellectual disability when their parents had passed away.

“Over time I have built good relationships with my members.

Those with sufficient intellectual ability know they can ask me for help, have an enjoyable chat, tell me about their lives and know that they will be listened to. Others with less ability see a familiar face which is hopefully comforting and reassuring. It’s lovely to walk into a home and see a beaming face and hear a pleased greeting.”

The idea arose from the concern of many parents and other interested persons – at a time when intellectual disability was not widely acknowledged or resourced in the health sector.

Much of our membership enrolled at this time and in the decade following. Some members and their families have received support for over 40 years.

In more recent years PAT has maintained modest growth in enrolled membership, while the landscape of the disability sector in New Zealand has evolved significantly. Provision for intellectual disability now enjoys a much higher profile, with plentiful support services and opportunities for wider social engagement.

“Many members have no one else in their life just there for them – someone from PAT who visits is their special person,” says Lynne King, a PAT advocate in the Wellington region for the past 16 years.

However, the need for advocacy completely independent and unaffiliated with external parties remains a key concern for New Zealand’s intellectually disabled.

PAT’s role in delivering this service is a great responsibility.

PAT makes a commitment to watch over the personal welfare and interests of its members for the remainder of their lives after parents are no longer able to do so. Otago’s regional advocate Wayne Winder says: “The aim with advocacy is to ensure wellbeing, rights, best interests, and wishes of the person.”

This is achieved through regular contact, visiting, reporting and planning to monitor the wellbeing of the member.

Advocacy is a service that argues for, or defends, another who is unable (or needs help) to do so for themselves. PAT is designed to work alongside the individual and to assist them, where needed so they remain happy and healthy.

Winder says “our aim is to get to know the person really well – what they like, dislike, want, and need – and how best to advocate for them (or support them to selfadvocate if appropriate)”.

Regional advocates work to maintain the rights of the enrolled Continued on next page

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Register for the NGO National Forum The Ministry of Health – NGO Health & Disability Sector National Forum will be held on Wednesday 12 October 2016 in Wellington.

The Forum kicks off at Westpac Stadium at 9am (arrivals from 8.30am) and finishes by 3.45pm. Any non-profit health or disability provider is welcome to attend – as are PHOs, DHBs, public servants and others who want to engage with health sector NGOs.

The programme will explore themes in the new NZ Health Strategy and how non-government organisations (NGOs) can respond to these and partner with others in the sector to maximise positive outcomes for mutual clients.

Forum speakers include:

The five key themes are:

• Hon. Dame Tariana Turia – former Minister for Whanau Ora, Disability Issues, and the Community and Voluntary Sector

• One team

• Marama Parore, Pou Ahorangi – CEO, Te Rau Matatini

• Closer to home • Smart system • People powered

• Keriana Brooking, Project Lead Transformation Projects, Ministry of Health

• Value and high performance.

• Carolyn Gullery, GM Planning and Funding, Canterbury DHB

The forum will be an excellent opportunity for learning and networking and making those important connections with fellow providers and funders.

Forum MC Gareth Parry will facilitate to ensure productive interaction among delegates.

• Edward Montague, Lead – Investments, The Social Investment Unit • Kate Frykberg, Philanthropy and Community Advisor • Derek Sherwood, Chair of the Council of Medical Colleges NZ.

Continued from previous page member so they continue to receive the best services available, while taking any necessary actions to ensure a positive outcome. Advocates encourage the potential for leading as independent a life as possible. The type and intensity of advocacy required will vary between each member, and from year to year.

In recent times the Trust’s advocates have worked to help members in a range of situations – large and complex to small and straightforward.

One advocate helped a member approach their local council regarding wheelchairfriendly pedestrian phasing at intersections.

A full, detailed programme will be available mid-late September. It is free to register, online to secure a place for this key non-profit sector networking event www.mohngonationalforum2016.eventbrite.co.nz

As a direct result of this intervention the phasing was changed. Another identified that a member felt they were not being treated fairly by service provider staff, and worked with the member and the staff to come to an agreement. In another similar situation when a resolution wasn’t reached, the advocate assisted the member to move to a different house.

On the graver end of the scale, advocates have been present to thwart the efforts of family members or associates seeking to take financial advantage of our members.

The Personal Advocacy Trust is another set of eyes and ears, and importantly a voice for its members.

How is the service funded?

PAT is administratively and financially independent of any organisation providing residential, occupational or other services for people with intellectual disabilities.

The service is funded almost entirely by contributions from people enrolling a family member or friend with an intellectually disability.

For more information visit www.pat.org.nz, contact 0800 PATRUST or email advocacy@pat.org.nz.

PARENT TO PARENT MAGAZINE • SEPTEMBER 2016

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Understanding Enabling Good Lives

By LOREN CORBETT Enabling Good Lives (EGL) is a partnership between the disabled community and the Ministries of Health, Social Development and Education.

It was first developed in Christchurch in 2013 to demonstrate how a new approach to supporting people with disabilities and their whānau can offer greater choice and control over the supports they receive, so they can plan for the lives they want. The EGL team includes disabled people, family members and disability sector leaders from around the country. The threeyear Waikato demonstration has been under way since July 2015.

This control is over the financial support they receive, allowing

them to choose what they do during the day and who they live with. This looks different for each EGL participant, and EGL recognises that the communities people live in are varied, with people doings things differently depending on their circumstances.

Some family members use EGL to increase flexibility around respite options; for others it is about choosing who they employ as support staff.

Once a person/family chooses to engage with EGL, a tūhono/ connector builds a relationship with them to make a plan and see how their ideas can be turned into actions.

In some situations it is simply connecting people to community groups or other individuals.

However, in many cases a budget is needed to ensure this plan happens; the tūhono/connector

will work with them through supported self-assessment. It is then up to the person to choose how their budget is managed.

If they are comfortable with managing it themselves, that is great. However, if paying and managing staff yourself seems overwhelming, no worries, participants are able to use part of their budget to contract someone or an organisation to assist with that.

To be eligible for EGL Waikato demonstration a disabled person needs to: • Be a New Zealand citizen or permanent resident living in the mighty Waikato • Meet the criteria of the Ministry of Health’s definition of a disability which is “a physical, intellectual or sensory disability which is likely to continue for at least six months and limits their ability to function independently, to the extent ongoing support is required”. This includes people on the Autistic Spectrum Disorder.

In my role in communications and administration I am often the first point of contact with families, and consistently hear stories of success from their connector/ tūhono later on. These stories from parents include: • The opportunity children have to now participant in mainstream activities • Having a choice over who they want to influence their child’s upbringing by employing staff of their choosing

COMMON MESSAGE: (L-R) Chiefs and NZ Sevens sports psychologist David Galbraith; public speaker, journalist and disability advocate Mike Pulman; EGL Waikato team administrator Loren Corbett; and EGL Waikato programme advisor Vaughan Mikkelson.

20 PARENT TO PARENT MAGAZINE • SEPTEMBER 2016

• The flexibility to use their budget to purchase items.

Continued on next page

Sign up for inclusiveness A Dunedin café where Parent to Parent Otago’s regular coffee group catches up is the first business in New Zealand to display Parent to Parent’s new disability friendly sign.

Croque-o-Dile Cafe owner David Law took over the business this year and wanted to help his community, so he put the call out on social media for suggestions on how to improve the cafe in the Botanic Garden.

He wanted it to be inclusive of all people with disabilities – seen and unseen.

One suggestion was to make it more autism-friendly — made by Parent to Parent autism support group member Tanea Paterson.

Tanea, who is on the autistic spectrum along with other family members, said people with autism often experience sensory overload from loud music, people talking at once in spaces that echo, bright colours, fluorescent lighting or unexpected situations.

She said one option was to have quiet times for people with autism and their families. While having designated autistic-friendly times in shops, malls and public spaces was a growing trend internationally, it had not yet caught on in here.

Continued from previous page EGL Waikato is currently working with 150 participants from the planning stage to the using of their budgets. While we are still only a demonstration, the transformation in people’s lives has been a true testament to what happens when people are given more control.

EGL is built on a set of eight principles, including beginning early, mana-enhancing, and relationship-building. These are not only the foundation of the work done in the demonstration, but also a guide for community

WELCOME: (L-R) Croque-o-Dile Cafe owner David Law with Denise Ives and son William Murray, Parent to Parent regional coodinator Sheryl Davies, Salem Paterson-Spiers and mum Tanea Paterson. Photo: Michael Smith

Parent to Parent regional coordinator Sheryl Davies said another option to calm autistic children was to provide Wi-Fi so they could have a familiar device to focus on if they got overwhelmed, and David plans to install Wi-Fi in October.

“We are keen to see a New Zealand where people with visible and non-visible disabilities can participate in any activities they choose without being prevented by access or environmental issues,” said Sheryl.

“Until that happens, we encourage all organisations to think about how they can be more accessible for people with visible and non-visible disabilities – and we want to see the message on these great signs displayed everywhere!”

The “We welcome everyone” message is endorsed

by Parent to Parent and Altogether Autism (which it runs jointly with Life Unlimited).

To become disability inclusive and get a free sign email suep@parent2parent.org.nz.

events and engagement. There are a range of events held, including forums aimed at whānau, people with disabilities and providers.

involved, do not hesitate to contact me. I am more than happy to arrange a connector/tūhono to visit you and your whānau.

At a recent forum EGL Waikato hosted Michael Pulman and David Galbraith. Michael is a local public speaker, journalist and disability advocate. He was joined by David, sports psychologist for the Chiefs and New Zealand 7s team. They shared a common message of reaching for your dreams, going for greatness in everything you do and working through mental illness.

My contact details are: 029 201 4780 07 957 1561 loren.corbett001@msd.govt.nz

If you would like to find more about EGL or are interested in being

www.enablinggoodlives.co.nz Loren Corbett is Enabling Good Lives Waikato’s team administrator and communications advisor. Having lived experience of a disability herself, she was keen to be a part of the EGL demonstration to make an impact on the future of disability supports.

PARENT TO PARENT MAGAZINE • SEPTEMBER 2016

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Thank you Harcourts!

Parent to Parent Northland regional coordinator Lynne Hansen (centre) is pictured with Harcourts Whangarei business owners Debbie and Mike Beazley.

“I would like to take this opportunity to thank Harcourts Whangarei Debbie and Mike Beasley and the Harcourts Foundation for their generous grant of $1290.00. I really

enjoyed meeting the team at the awards morning tea on August 30. It gave me a huge sense of feeling supported locally and being acknowledged. We plan to use the grant to fund professional development staff training, and to enable me to attend Parent to Parent’s staff training and AGM in Hamilton in October. Thanks again for enabling me to continue the work that I do in Northland.”

– Lynne Hansen

Welcome to new faces

Suzie (Shizuka) Haynes Parent to Parent Coastal Bay of Plenty Regional Coordinator Originally from Japan, Suzie came to New Zealand in 2001 and worked as a Japanese tour guide as well as a translator for the famous sheep show at the Agrodome in Rotorua.

A single parent, she has two children – Edward, 12, and daughter Shinate, eight. “I am not who I am now without my children, who taught me a lot about being a parent.”

Since becoming a parent Suzie has worked for 11 years at Air New Zealand as an aircraft dispatcher at Rotorua Airport, and three years as a teller at ANZ.

After she moved the family to Tauranga at the beginning of this year, she returned to Air New Zealand for six months.

“It has been almost a month since I started this role in the Coastal Bay of Plenty region for Parent to Parent,” she said. “It is challenging for me as it’s a totally different experience from what I have done in the past.

But having a son with autism and the experience I have with him led me to take up the chance to connect with people, families/whanau who need support in this area.

“I am enjoying in this role very much. I am a very approachable person, so please feel free to contact me any time. I am looking forward to meeting you.”

Trudi Meyer Parent to Parent Nelson Regional Coordinator Trudi’s career has primarily been in Human Resource Management working for private, Government and State Owned Enterprises including Coca-Cola, NZ Post, Department of Corrections, The Warehouse, Ministry of Primary Industries and the Fire Service.

The opportunity to work with Parent to Parent presented itself at the perfect time when Trudi was considering options to return to work after having children Tobi, six, and Heidi, 16 months.

Personal experience of the disability sector came after Heidi was born and, looking on the sunny side of life, it has made Trudi passionate about the work that Parent to Parent does. The opportunity to inform and support others to make sense of some of the challenges of 22 PARENT TO PARENT MAGAZINE • SEPTEMBER 2016

living with a disability is very rewarding and work Trudi is proud to do. She recalls the sense of bewilderment when she learned of her daughter’s health condition, and while she is grateful for the medical care Heidi receives, the ongoing realities of living with the condition were not clear. Early on she also fell victim to “Googling” – which only led to more confusion and sleepless nights. Finally, she had a conversation with a mum who had a child with the same condition.

Trudi is enjoying the challenge of learning a new sector and is excited to organise great events for families of Nelson and Marlborough.

Having recently moved to Nelson, Trudi’s family are looking forward to summer. They love camping and have a rumpty old caravan that will no doubt visit Golden Bay for a summer holiday.

Proud to be unique Since forming in Auckland in 1983, Parent to Parent New Zealand has grown into a nationwide organisation with 11 regional offices, and demand for our free, confidential services increases annually.

Advertise in this magazine!

Parent to Parent is the only organisation in New Zealand that provides its two key support services: 1. Qualified researchers offer free information on 3600+ rare and common conditions to parents/grandparents, early childcare, schools, workplaces, health professionals and anyone working in the disability sector. There is no limit on how much information someone can request, or how often.

2. We pair parents up with trained Support Parents who have an older child with a similar condition and have walked that road. Lived experience and the wisdom that comes with it is something only parents who have “been there, done that” can offer.

How can you help?

• • • • • • • • •

One-off donations Automatic payments Tax deductible payroll payments Bequests (three ways to make a bequest) Fundraising for a good cause? Think of us!

Sponsor a child to a SibShop or SibCamp Sponsor a parent to a Renew workshop Sponsor a workshop in your region Adopt-a-week – sponsor a regional office for a week

We are passionate and proud of our achievements – particularly our ability to respond to the changing needs and requirements of the families that use our services – and we consistently receive positive feedback from families Find out how individuals and companies can make a real difference to the lives of families of children with disabilities at www.parent2parent.org.nz or phone Sue on 0508 236 236.

“Thank you so much for the beautiful work you do. This is going to make such a difference in our lives, to know we aren’t alone in this. I cannot thank you enough for this connection.”

“The things I enjoyed about the SibShop were meeting people that know how I feel; learning different ways to get through the hard times; being able to talk freely; the food and friendly people; the subs and activities.

It really helped me for getting to share my feelings, nice leaders, not forcing you to share anything.”

“Thank you for the day yesterday; we found it really encouraging, and it is perhaps a turning point for us as we realise that we have still been struggling accepting the diagnosis instead of focusing on the potential for a happy future for our family. That has now changed. Please pass on our gratitude … and keep up the good work!”

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, and Parent to Parent (USA and Australia)

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 sizes, prices and specifications contact Sue 0508 236 236 or email suep@parent2parent.org.nz

PARENT TO PARENT MAGAZINE • SEPTEMBER 2016

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