Magazine july 2016

Page 1


Dynamic duo Writer in LA

A different kind of normal Grabbing life by the wheels

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. Thirty two 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. Free and confidential, its two main services are the Support Parents connection and providing information. Support parents: Having contact with another parent who has ‘been there’ can make all the difference. Parent to Parent supports families/whanau by connecting 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 trained 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.

@ www

contact us

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facebook @parent2parentnz



free phone 0508 236 236


Caring for family carers Two new national services to support family carers were launched on June 8 in Wellington by the Ministry of Health for delivery by not-for-profits SAMS (Standards and Monitoring Services), Parent to Parent, and Carers New Zealand. With a karakia by SAMS chairperson Gary Williams, the launch was opened by the Associate Minister of Health Hon Peseta Sam LotuIiga, and attended by the Minister for Disability Issues Nicky Wagner, along with key advocates representing the disability sector. The services, developed by carers for carers, will assist people who support people with disabilities nationwide. The Carer Matching Service (Carers NZ and MyCare) and Care Matters both aim to ensure carers are connected, informed and able to access relief care. Care Matters, delivered by SAMS and Parent to Parent, is a learning and wellbeing service providing face-to-face events, web-based resources and a freephone service. The freephone 0508 236 236, operated by Parent to Parent, connects callers to its existing network of local knowledge and support, and facilitators keen to ensure face-to-face learning opportunities relevant to local interests and needs. Many facilitators are people with personal experience as carers. It also directs carers to sources of respite care at Carers NZ’s new National Relief Care Matching Service, which matches disabled people and family carers with relief carers in their area, online and through its 0800 777 797 number. Carers NZ partnered with MyCare Ltd to provide free access to a national pool of relief carers. Both services can be accessed at no cost by carers who receive disability support via Needs Assessment and Service Coordination services (NASCs). •

SAMS is as 35-year-old service well known in New Zealand, Australia, and North America for its pioneering work at the forefront of developing carer/family education and leadership. At grass roots level it has annual face-to-face contact with more than 700 carers in New Zealand. Information about SAMS is on

Carers NZ is New Zealand’s peak body supporting family carers of all ages. It acts as the ongoing Secretariat for the NZ Carers Alliance of more than 45 national not-for-profits, including SAMS and Parent to Parent. It supports a network of more than 50,000 carers and community organisations working directly with carers. Information about Carers NZ can be found at


Associate Minister of Health Hon Peseta Sam Lotu-liga was keynote speaker at the Care Matters launch. Photo: MARK COOTE

Together towards tomorrow


In this issue we acknowledge how far Parent to Parent has come, while we reposition for the exciting journey ahead.

4 letters to the editor

Salutations to former CE Anne Wilkinson who recently left Parent to Parent after 25 years – 12 at the helm. Since the organisation was founded in New Zealand in 1983, it has grown from half a dozen parents and professionals to 28 staff and 600+ volunteers. Much of this growth can be attributed to Anne’s extensive involvement forming vital partnerships in the disability sector. We welcome new talent to the Parent to Parent family: Our management team is complete with the injection of expertise, guidance and energy from CE Noel Cunneen, executive manager Julie Barnett, and national operations manager Guy Ockenden. We welcome back programme coordinator Ruth Taylor, and Nelson regional coordinator Trudi Meyer has just started.

6 writer at la vidcon Geoff Lewis

8 opinion

10 wowed by amazingness Geoff Lewis

Last year we held focus groups around the country to hear what communities had to say about our 25-year-old logo. The consensus was that we had outgrown it, and we are now at the creative end of a logo redesign process.

12 dynamic duo Geoff Lewis

This magazine will also undergo change as it makes the transition from what was originally a newsletter, to a source of news and inspirational people stories. We welcome letters to the editor and reader feedback – your participation in the survey below would be much appreciated too.

14 a different kind of normal Margo Janke

Our editorial team is keen to hear about people of all ages, with any disability, enjoying their chosen interests, leading great lives and getting out in the community; and the community heroes who help enrich the lives of people with disabilities. Please help us share their life stories, because they inspire all of us for so many reasons. Many readers are people with disabilities or parents/siblings of someone with a disability – these testimonies give them ideas and hope. We focus on the person and the ability of individuals, as well as the significance of meaningful relationships.

16 technology: grabbing life by the wheels Sue Pairaudeau 18 anne wilkinson tribute Geoff Lewis

Sue Pairaudeau Business Development Manager Parent to Parent New Zealand


20 new crew Be in to win a $100 Prezzy Card just by answering our magazine survey questions. Run by SurveyMonkey, it is 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 for two months until the draw on Friday September 30.

Editor: Sue Pairaudeau Graphic designer: David Creighton-Pester, Scorch Design Cover: Glen Terry and Alex Johnsen, by Geoff Lewis 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.



Letters to the editor

Organisation empowers people

Proud parents

My son was diagnosed with Autism Spectrum Disorder in 2010. From the beginning, I was on the search for information, support and understanding. I was given many different pamphlets, sent on educational parenting courses, and read everything I could get my hands on. I still felt lost.

Our life has been one of continued learning, adaption and, most importantly, acceptance of who we all are as individuals.

Then I was introduced to Parent to Parent, and began my journey by attending a two-day course on being an advocate. How refreshing. I had found my ‘place’ … my information, support and understanding.

Each child has his or her own distinct personality, strengths, areas of interest, method of communication and social ability. As a family our greatest challenge has been finding activities we can enjoy as a whole, where the overall sensory experience which may be enjoyed by one, may be completely intolerable for another.

What makes Parent to Parent different? It is all about parents supporting parents. A hard-working, dedicated team of people staff the organisation which, in turn, facilitates support for families from families who ‘get’ it. No judgement. No book-earned support. No expensive treatments or therapies. Good old fashioned “Hey … I understand … I feel the same … I have been there”, or … “this worked for me … have you thought about trying …” Through Parent to Parent I have been trained as an advocate, completed Support Parent training, and am an active Support Parent within the organisation. Being a Support Parent is so satisfying. I have personally supported many other mums and grandmums from around NZ by either providing information or an understanding, empathetic ear. Each time I help someone I also gain from it – supporting others reminds me of how strong and equipped I am as Mama Bear to my special son. It is thanks to Parent to Parent that I feel like this. The organisation empowers people. It has empowered me. Another important facet of the organisation is the face-to-face support groups; informal gatherings where members can meet, talk and share. These really are lifelines for many. They are low key and feel safe. In Otago, our coordinator Sheryl Davies works tirelessly for our families. She consistently strives to support us all – encouraging us, empowering us to not only be great parents ourselves, but to support each other. Parent to Parent is my chosen organisation. Without the generous support of many, there would be no Parent to Parent. I am so very thankful for those who give so generously. LEAH GARTHWAITE Dunedin



My husband Richard and I are proud parents of three gorgeous autistic children, Christian, Tara and Aidan.

We sum up the adage “If you’ve met one person with autism, you have only met one person with autism”.

Our children have taught Richard and I so much, we are now aware of many details the brain filters out and of the world around us. Despite facing various obstacles, we have met many accepting, accommodating and understanding individuals. Sadly we have also encountered many that did not want to celebrate the wonderful differences in our children and this continues to be an ongoing challenge for us, but we choose to focus on the positive. Parent to Parent has been a fantastic, encouraging organisation which has provided plenty of advice and information regarding services and information on autism and related issues, and support groups available. I am now part of a network of like-minded parents who accept our children for who they are and support and assist them to use their strengths to enable them to be comfortable with their neurology and achieve full potential as valuable members of our society. KRYSTINA WICKENS Whangarei Parent to Parent welcomes your views. Letters should be no more than 300 words, and must include the writer’s full name, and (not for publication) address and daytime phone number. Letters run on a first-in, first-served basis, and we reserve the right to edit, abridge or decline letters. Email to suep@ or print out and post to Sue Pairaudeau, Parent to Parent National Office, PO Box 234, Waikato Mail Centre, Hamilton 3204.

Join the conversation The Office for Disability Issues has been drafting a new Disability Strategy with the feedback it received after people took the opportunity to say what they thought the future for disabled people in New Zealand could look like. More than 600 people/organisations provided their views online, by email or video; around 500 people took part in workshops and more than 10,000 people viewed the I have a voice video on People thought the Strategy should be aligned to the UN Convention on the Rights of Persons with

Disabilities, and that it should identify targets that could be monitored and reported on. A second conversation from July 25 to August 21 will be held to see if the draft Strategy is on the right track. It will follow the same process as the last, with regional workshops and support for groups to run workshops. People can also provide views by email, via an online survey or by uploading a video on If you would like to run your own workshop to seek feedback from your members or a group within your community, email Hannah Hsu on

Experience of a lifetime for students Achieve 2B is an intercultural programme setting itself up to facilitate national and international exchanges for young people with disabilities. A newly registered Charitable Trust based in Whangarei, it works with national and international partners and disability service providers to enable students with disabilities to benefit from the experience of a lifetime. “There is an absence of intercultural exchange programmes that cater for the needs of young people with disabilities,” said Achieve 2B founder Julia Hartstone. “With support and training they can be New Zealand ambassadors.” Julia, who has mild cerebral palsy, would know. In 1988 at age 17 she did the unthinkable and completed a one-year American Field Service (AFS) exchange programme in the United States. She said this positive experience provided a part of the blueprint for her life, and that during her career as a social worker she developed a passion for working with people with disabilities. Achieve 2B is now backed by a board of leaders in disability governance and inspirational advisors, sponsors, partners and endorsers. It will have robust student supports and risk mitigation so its students can achieve. “The intention is for young people to experience life in another school, community and family, on national and international exchange programmes of three to 12 months,” Julia said.

“From this transformational experience, students will gain self-confidence, self-mastery and independence to become our future leaders, professionals and mentors.” This year Achieve 2B is working towards opening its first two chapters in Whangarei Julia Hartstone and Auckland. They will be volunteer-operated community hubs providing connection, support and education to incoming and outgoing students, parents and other interested community agencies. Partnerships will be developed in other countries and eventually Achieve 2B plans to replicate itself in its partner countries. Next year Achieve 2B has a student going to Australia for three months. “We are proudly in partnership with Interchange – Outer East (IOE) in Melbourne. It is a service that provides respite care, social and community activities for children, young people and their families. Achieve 2B and Interchange have shared synergies in which both organisations can mutually benefit.” For more information visit PARENT TO PARENT MAGAZINE • JUNE 2016


Writer at LA VidCon conference Hamilton woman Tegan Morris last month attended the huge VidCon conference in Los Angeles (June 23-25) – escorted by four people she had only just got to know. GEOFF LEWIS caught up with Tegan before she left NZ. Tegan, 28, has muscular dystrophy, a condition that has seen her wheelchair-bound since childhood.

She attended last year’s VidCon, sponsored by YouTube, which attracted nearly 30,000 participants to the Anaheim convention centre near Disneyland.

It has not dampened her enthusiasm to find things at which she can excel, and creating a weekly YouTube video since January 2015 sparked her interest in the medium.

Girls in LA

“The videos vary in length. Sometimes they’re like a video diary and some have interviews with people with disabilities, or I just talk to the camera. I try to keep it fun and interesting and give the insights of people with disabilities, so people without disabilities can realise what it is like to have a disability.”

Friends and family came together to help fund the trip, although international travel is a challenge for a person in Tegan’s condition. To help, she had four young female volunteers, three from New Plymouth and one from Wellington. As the group planned to stay in California for around three weeks, and to help keep costs down, Tegan steered clear of hotels and other commercial tourist traps. Instead she looked for something more affordable.

Tegan Morris with Danielle Watt (left) and Alex Hazelwood from New Plymouth who were with her in Los Angeles.



‘’We could have stayed in a hotel in Anaheim, but it’s all very touristy and I decided it would be an experience to stay in an actual neighbourhood. I went through an international website called AirBnB (an international networking company that connects travellers with private owners of houses and apartments to let) and requested a house to let in an area of the city I wanted. Hiring a house turned out to be quite a lot cheaper than paying for hotels. “I’m also interested to see how people live dayto-day, what sort of things they do for fun, the places they eat. We’ll use public transport and try to immerse ourselves in the community – that’s the best way to see the place and get to know people.”

Boot camp “I have four girls I met on my YouTube group with me. We got to know each other online.’’ The women visited Tegan before the journey to learn how they could support her. “It’s going to be a boot camp and crash course. I will have supporters in the US, but none of my regular friends were available to travel with me. Having the girls with me adds an extra dimension to the adventure. We will have to get to know each other in a different environment. None of them have been to the US before so I’ll be the one with the experience.” Danielle Watt and Alex Hazelwood arrived in Hamilton in May to meet Tegan in person for the first time. Both are keen YouTubers and saw joining Tegan as an ideal way of taking part in the VidCon conference. Alex’s older sister Connah, and Laura Bruce from Wellington, are the other two companions.

Novel story Tegan is also an author and has spent about a year working on Not Always Lost, recently self-published in soft-cover after a fruitless struggle to find a mainstream publisher. Not Always Lost is based around the fictional character of Shannon, a teenage girl who loses the ability to walk, and her mentor Koro Artie. While not

Tegan Morris with her book Not Always Lost. Photos: GEOFF LEWIS

specifically set in Hamilton, it makes mention of localities around the Waikato. “The novel has been a labour of love for me. It sat in my conscience for some time before that – waiting to be written while I gained the confidence to create it. “As many writers do, I have let a lot of my personal experiences inform my work. For me this comes from being a wheelchair user. “My experiences differ from (the book’s central character) Shannon, but the journey she goes on in an emotional and psychological sense is deeply connected with my own. “The aim of this novel was to share a story that people could identify with, but also hopefully gain new insights into the experience of life with physical limitations and disability,” she said. Not Always Lost will be available in electronic and paperback on August 1. Order a Kindle book for US$1.98 on 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.




Systemic change can take 30 years By GARY WILLIAMS The evolution of the formalised Governmentfunded support for disabled people and, to a lesser extent, their families over the past three or four decades has seen a bit of a shift from being almost exclusively custodial care to be a little more community-centred and flexible. Initiatives like de-institutionalisation, homebased support and Individualised Funding all are mechanisms for better support. But there is a way to go. In my ideal world, disabled people and their families would have optimum control over their lives or, at the very least, no less control than everyone else our country. We have a number of leverage tools at our disposal that weren’t around 20 years ago. The most important of these is the UN Convention on the Rights of Persons with Disabilities (CRPD). Although its intentions are clear and achievable, its biggest bonus for New Zealanders is that it has placed our country in the sight of the international disability movement because, at the time of its development, our country stepped into the spotlight to take a leading role. This was a position that I enthusiastically encouraged our Government to take because I knew that in the future our Government would have to walk the talk. Indeed, my international colleagues expect our country to be the implementation exemplar for the rest of the world. Internally, New Zealand has a raft of strategies like the Disability Strategy, Carers Strategy, Te Ao Marama, etc, which are meant to help. With the current revision of the Disability Strategy under way, we are streetwise now to know that fine words are useless unless they are implemented. Probably, the most talked about initiative at the moment is Enabling Good Lives (EGL). This is not a programme or service, but a set of principles to enable good lives. These principles are: • Self-determination: Disabled people are in control of their lives. • Beginning early: Invest early in families and whānau to support them to be aspirational for their disabled child, to build community and natural supports, and to support disabled children to become

independent, rather than waiting for a crisis before support is available. • Person-centred: Disabled people have supports that are tailored to their individual needs and goals, and that take a whole life approach rather than being split across programmes. • Ordinary life outcomes: Disabled people are supported to live an everyday life in everyday places; and are regarded as citizens with opportunities for learning, employment, having a home and family, and social participation – like others at similar stages of life. • Mainstream first: Disabled people are supported to access mainstream services before specialist disability services. • Mana enhancing: The abilities and contribution of disabled people and their families are recognised and respected. • Easy to use: Disabled people have supports that are simple to use and flexible. • Relationship building: Support, build and strengthen relationships between disabled people, their whānau and community. They are all interdependent and indivisible so need to be implemented wholly. I also think the principles are universal and apply to all humans because everybody wants to live a good life. EGL is currently being trialled or tested in the Waikato and has had a demonstration in Christchurch over the past three years. The evaluations from these two areas will help inform a national rollout of EGL starting in 2018. This will be challenging for some time ’though. For Government, they’ll need to be confident that the billions of dollars spent on disabled people each year can be better utilised to gain better outcomes by basing its investment on the EGL principles. This will be a challenge in many ways because Government does not have a benchmark from which it can judge.



I am an advocate for the social model of disability, hence I use the term “disabled people” as the collective noun for everybody with impairments, whose full participation in their family/ community/wider society is limited or nullified because of deliberately constructed artificial barriers.

Continued on next page.


Raising your disabled child as a person first is the way forward By MICHAEL PULMAN If the phrase “disability is a life where change is the one constant” rings true, then in the latter years, parents of children with disabilities must be prepared to step back from being the enabler of change, and let their children make decisions for themselves. Everyone grows up, even people with disabilities. A common and understandable trait among parents is that they keep their child wrapped up in cotton wool for as long as possible. But is a child with a disability ever really wrapped up in cotton wool? Of course not. Disability taught me to grow up fast, but it taught me to be a realist even faster. From a very young age I’ve known that in order to be successful in anything I attempt, I have to first take my disability and its realities into consideration. Don’t get me wrong, being in a wheelchair never makes me think I cannot do something that I’ve really set my mind to, but it does make me think in different ways about how I am going to achieve said goal. Moving out of home and becoming independent was one of those big challenges that was compounded by the needs I have due to my disability. How many support workers do I need? How do I get out into the community? Will there always be someone there to help me go toilet or have a shower? Those were just some of the questions I had to ask, but trust me there were literally hundreds more.

Continued from previous page. For example, I think that the only thing that Government can say with any certainty is that there is money spent on disabled people. The socioeconomic indicators for disabled people suggest that the spend is not where or how it ought to be, and it does seem like a random scattering of resources. Disabled peoples’ issues are still the same as they were 30 years ago. Our society stubbornly neglects us when it comes to health, education, employment, housing, transport, discrimination and so on. In our sophisticated world, we shouldn’t have to still be distracted by these things.

As a young person, it is easy to get ahead of yourself and not think everything through, but I think one aspect that does credit the majority of people with disabilities is that their understanding of their needs remains a constant throughout their everyday thinking and planning. I’ve seen a lot of parents of children with disabilities go out of their way to ensure their child doesn’t (yes doesn’t) set goals too high out of fear of failure. To me, this is compounding the emotional affects and frustrations that the disability has on the child. It also does them a major disservice for when they move out of home and face the “real” world independently for the first time. Is it easy to become comfortable in the constant day-to-day caring tasks a parent of a child with a disability, and the child themselves, have become used to? It certainly is, and parents need to be open to change and creative thinking. Everything I’ve achieved in my life has been on the basis of “person first, disability second”. That’s how it should always be, but sadly, if parents allow it, the child can easily get the two swapped around. Michael Pulman is a freelance journalist, public speaker and disability advocate.

I want EGL to provide the impetus to transform the disability support system because most disabled people and their families would agree that the current deficit-based model to access the formal system doesn’t work for them. In fact, the current system perversely incentivises disabled people to be as disabled as they can. As we near the 10th anniversary of the adoption of the CRPD, let’s not have to wait another 20 years for meaningful change. Gary Williams is Ngati Porou and based in Christchurch working as a consultant to enhance the lives of disabled people. He has had involvement with many of the important initiatives in the disability sector over the past two decades, and is the chairperson of SAMS (Standards and Monitoring Service).



“I will be the first person to buy your CD when you’re famous.”

y b d e w o w e To b s s e n g n i amaz

StarJam tutor Sarita Murdoch and Jammer Alex Johnsen.


Sarita Murdoch is a very busy person, but takes a few hours out of her week to help children and young people with disabilities enjoy music and develop their talents. The Morrinsville-based property manager, who has an extensive musical background, works as a tutor for the StarJam organisation. Her involvement was a matter of last-minute luck. Sarita comes from a family well-known in the Waikato and Auckland acoustic music scenes, and the idea of offering her skills to StarJam came from a suggestion from her step mum Maxine. “I was looking for some extra work. I saw an advertisement wanting people to help with StarJam, but the cut-off date was that day, so I stayed up to nearly midnight writing a covering letter and a CV and sent it through. As it turned out, so late at night, (StarJam founder) Julie Bartlett was about to close her emails when she saw my application come through – I made it by the skin of my teeth.” That was five years ago, and how time flies. 10 PARENT TO PARENT MAGAZINE • JUNE 2016


StarJam caters to children and young people between the ages of six and 24 with a wide range of disabilities both physical and intellectual. There are seven StarJam groups in Hamilton which meet in different venues during the week. Sarita is one of six tutors and began by teaching drumming in the chilly old Frankton Railway Hall. These days, drawing from her own extensive performance background, she works as a singing tutor with a mixed group at Southwell School. The experience has been a huge learning curve, calling on all her skills and helping develop new ones. “In the first year I wondered what I’d got myself into and whether I would be able to do justice to my role. Some of the participants had fairly challenging behaviours and really needed my undivided attention and guidance. Some had very little physical movement, so I needed to be creative and thoughtful in my approach. Others had boundless energy so keeping them stimulated and calm was essential – and all of this at the same time. I found it helped setting good strong boundaries.

“It has been a huge amount of learning and what I get out of it myself depends on the make-up of the group. I work on developing trust and building relationships that can continue and deepen over time.

Former Fairfield College head girl Alex Barrett is now StarJam Waikato/Bay of Plenty regional co-ordinator. Alex joined the organisation after having spent three seasons working with kids with disabilities with Camp America in Texas.

“The aim of StarJam is to build self-confidence and performance skills and raise the visibility of young people with disabilities so that the wider community can be wowed by their amazingness.

“Each StarJam workshop has space for 12 Jammers and has a goal they aim to reach. This is much the same in singing, drumming, dancing and our band, where the Jammers play a huge role in choosing their songs and deciding how they are going to come up with a performance piece.

“Every group is different in its preferences, and I see my role as working to bring the best out of them,” she said. All StarJam workshops nationwide are run to the same template. When the Jammers arrive, everyone gets a chance to share and talk about their week or news they have. They play a few quick warm-up games then get into the main part of the workshop – working towards their performance pieces. Each workshop is finished off with ‘spot the talent’, which is often the most popular part of the session. Like a mini talent quest, the Jammers can tell jokes, sing a song or dance – anything they want. The stage is theirs for that moment while the rest of the group becomes the audience and then gives them positive feedback.

“We believe in journeying together within a supportive, non-competitive environment where Jammers are free to be themselves,” Alex said. “StarJam is about giving young people a platform to shine. My favourite piece of feedback – which is very common – is ‘I will be the first person to buy your CD when you’re famous’.” StarJam was established about 10 years ago by Auckland couple Julie and Roy Bartlett and now caters to more than 400 Jammers in Auckland, Hamilton, Tauranga, Wellington and Christchurch.

One evening Sarita brought in a big sheet of paper. “I asked the Jammers to suggest things that made them happy and talk about their favourite bands. We got all sorts of crazy and wonderful stuff. I took it all home and worked it into an awesome song.’’ The StarJam experience has been successful in uncovering Jammers with exceptional talents and aptitudes. Hamilton StarJam caters to around 80 and the groups work towards a full-on, end-of-year concert, complete with professional sound, lighting, hair and makeup. This year the concert will be held in the Activate Church centre in Hamilton. The seven workshops in Hamilton include Sensational Singing – Sarita Murdoch; Boogie Bandits (band) – Jade Browne; Eastside Groovers (singing and dancing) – Jade Browne; East Dazzling Dance – Helen Foy; West Dazzling Dance – Anna McAllister; Jazzy Jammers (dance) – Jessica Little; and Dynamic Drumming – Bekka Gray. Each tutorial also has two volunteer helpers. Tula Rosella Shaw, Jazmin Middleton-W ood, Alex Johnsen, Etha n Powrie-Gibbins, Erin O’Neill, StarJam tutor Sarita Murdoc h, Sarah Jane Huds on, Sophie White and volunteer Nora Geng. Photo : GEOFF LEWIS



Choice and independence for dynamic duo Anyone meeting Alex Johnsen and Glen Terry would quickly realise how much they enjoy their busy lives. Both bounce with confidence expressing themselves, as GEOFF LEWIS discovered. Alex and Glen have Down syndrome and live independently in a comfortable unit with one other flatmate. On six out of seven evenings a week, a Community Living support worker visits to help the men prepare dinner. They have their own interests, but share many. ‘’We’re pretty independent. We chose who, when and what sort of support we want. We help write the ad for staff and conduct interviews,’’ Alex said.

Alex With his face framed in his developing beard, Alex has the faintly weary air of the man-about-town, and enjoys a variety of social and physical activities. Among them is power-lifting, and he pulls up his sleeve to show off a bulging bicep. He trains twice weekly at the Morrinsville Fitness Centre and competes in the U/74kg class. He is a member of the Special Olympics Waikato powerlifting team, and is its Waikato representative. Last year he was chosen as a global ambassador for the Special Olympics. The role sees him talk to other athletes with disabilities competing at a top level, along with their coaches, and taking their concerns back to their national and international sports bodies.

rubbish bags. When he isn’t at work, he’s based in the Community Living’s Transition to Employment vocational service where activities include knitting, swimming and zumba. Alex loves collecting things and eagerly hauls out a banana box full of pens, pencils and coloured pencils – 756 of them. He also has a big box of marbles – oilies, cat’s eyes and steelies. On Fridays it’s games and music for both men. Members of StarJam, they love band practise and are learning the guitar. They are also avid Dungeons and Dragons fans. Alex is working towards his learner driver’s licence while Glen has his – all he needs is a car.

Glen Glen was born in Hamilton but raised in Tokoroa where he spent his early school years, moving to Hamilton with his family during high school. His dad Gary is an engineer and fitter, and mum Linda works for the Ministry of Education. He attends Transition to Employment three days a week and is a member of a group of volunteers helping to develop and maintain the A J Seeley Gully reserve in Hamilton East.

Both men are members of the Special Olympics Waikato basketball team.

One of Glen’s latest projects is his own micro business Easy Read. The idea is to provide a service turning dense official documents into language that is comprehensible to people with disabilities, and he has applied for a literacy course at Wintec to help give him the skills he needs.

Alex has had “plenty of jobs”, starting with working for mum and dad in the family property management business, making up tenancy packs and sorting out

“I’m in the process of establishing it, and I’m going to hire a PA to help to take technical material and explain it simply.”

A personal goal is to be included in the New Zealand squad to compete in the Special Olympics World Games hosted in Wellington in 2017.



(L-R) G

len Te

rry, 25

, and

Alex J


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In April, Glen and Alex joined the local Enabling Good Lives (EGL) organisation, and Glen is a paid member of its leadership group. He is also president of People First, and Alex is its midland regional secretary and treasurer. ‘’We talk to people with disabilities and take their concerns to the appropriate helping agencies, and address issues including the availability and access to resources in the community. We have regular meetings and meetings with EGL and leadership forums once a month,” Glen said. Over the past two years Glen and Alex sharpened their skills in motivational speaking, taking their experiences around moving out of home and going independent to audiences in Wellington, around the Waikato and Tauranga.

• Community Living’s motto is Live, Learn, Work, Belong – supporting people to live their own dreams through community connections and provide residential support in their own homes, vocational services, volunteer work, community participation and employment. • People First is an organisation designed to give a collective voice to people with disabilities – its slogan is Nothing about us without us. • Enabling Good Lives (EGL) is a group derived from a Government initiative to save money in the disability sector and ensure that people who need support are getting what they need.



Support Parents

A different kind of ‘normal’ made life exceptional By MARGO JANKE

I think of myself as lucky. I have two boys – one has cerebral palsy and epilepsy, one is ‘normal’. Like all parents-to-be, his dad and I were just happy to be having a baby. When Phoenix was brain injured, as you can imagine, it threw us into a head spin we took a long time to recover from. Every muscle in Phoenix’s body was affected by his brain injury. For the first 12 years he had regular seizures and we trialled one treatment after another. He is non-verbal, and needs help to eat, walk, toilet, etc. But what wasn’t affected was his intelligence, sense of humour and determination. Phoenix is exceptional. He walks (with a walker), talks (with his hands); he has friends, and hobbies (including rock and roll). He does everything a ‘normal’ person does – just differently. He is now a teenager and, like all teenagers, we deal with the normal defiance and strong will. When I tell people I have a special needs son, their first reaction is to say something to the effect of: “That must be so hard for you”, or “oh, I am so sorry”, or “how do you cope?” At first I said: “Thank you, no we are fine”, or “it’s OK”, or “yes, it can be hard”. But that was early days. Now I say “actually, I have a 10-year-old too, who is ‘normal’ but can be as much a handful as the teenager”. I think you have to live as a parent of a special needs child to understand that life isn’t harder, it is just different. It moves at a different pace. Food time takes longer and needs to be planned. Trips need more equipment. We spend money on different things to the average house. Is this hard? No. Phoenix and his brother Lakota are exceptional children. Growing up with a special needs brother has made Lakota kinder, more mature, and more thoughtful than any other boy in his peer group. He is so capable – all because of Phoenix – and also no longer fits into ‘normal’ because of his special life and influences. 14


Support Parents

We got to know nurses and doctors by first names while Phoenix was in hospital for weeks at a time with seizures, chest infections or pneumonia. He would seizure for a week and need to be force-fed liquids; have an operation and I would wait by his bed. We know the names and side effects of drugs, what it is like to see your child in so much pain he needs morphine on a drip, and what it is to be told to just ‘love’ our child now because he might not be around later. That was scary until I gave up trying to control the future. It’s strange when that happens. I grieved for Phoenix and the boy he might have been, then finally understood what a blessing he is to us and how lucky we are to have him just the way he is. Now, I call myself a ‘lifer’. I will be arguing with doctors, hospitals, the system, for many more years to come. I will fight for Phoenix’s rights, and my rights. I will also help other parents to do the same with the opportunity Parent to Parent has given me.

Helping others Once I needed friends to understand what it was like to be me, and occasionally something happened and they got a glimpse into my life. Now, I just want to help others. If I can let another parent know they aren’t alone, that things get better, that you do have rights, that doctors are not the be-all-and-end-all, that life is what you make it – you just have to decide roughly where you want to head and, like Dr Seuss, let your feet carry you there. When Phoenix was about five, I came to accept that I couldn’t hold down a job that worked for both of us. I started my own (Lulu’s Body Art) and this is the way it has been for six years. I am a working mum, a body artist, children’s entertainer, performer and makeup artist. Without him I would never have found my true passion – painting people – and I have become

part of an organisation that helps parents and family members. I gladly work for Parent to Parent every year during Awareness Week, painting to raise money for the cause I believe in. I feel privileged that this has all happened. I have been with Parent to Parent Wellington for almost nine years, volunteering my time, becoming a support worker and generally devoting time to the organisation because it is so important. We have lived in many countries, and there is nothing like Parent to Parent in any of them. It is important for parents and families to know that being different doesn’t mean you have to be alone. I want to make that journey easier for new parents coming to the game. I am on the Wellington Parent to Parent Committee. Years ago when I first went along, Lakota had to come with me and became the youngest ‘committee member’. He loves representing himself as a helper and support to other siblings. He has been to (Parent to Parent’s) SibSupport workshops and camp, and every Awareness Week he is there helping me while I paint faces. I have learned to truly appreciate the little things. The doctors told me not to expect anything from Phoenix. But today he goes to school, plays in a drumming group, and every year he walks a lap in Relay For Life, which is like running a marathon for him. The other day, he petted the cat. It doesn’t seem like a big deal, but when your child can barely use his hands, it means something. I think all children are special. I believe we are all unique, we are all different. We are all just trying to get from one day to the next.

Margo Janke is a mum, artist, a Wellington Parent to Parent Committee member, and valued fundraiser and volunteer. Her business is Lulu’s Body Art




Grabbing life by the wheels By SUE PAIRAUDEAU Award-winning Otaki inventor and engineer Kevin Halsall and his team are revolutionising the mobility market with the hands-free wheelchair they’ve called the Ogo. Created in Kevin’s workshop with development input from his good friend Marcus Thompson, the Ogo uses self-balancing technology to return a sense of freedom to the lives of its users. Kevin met Marcus when his daughters attended Otaki College where Marcus taught. They shared a love of field archery, particularly the unique experience offered by their local Kapiti club – off-road native bush and open grassland targets. After watching Marcus exhausting himself struggling over rough terrain in his conventional manual off-road trike, Kevin set himself a personal challenge. ”The first time I hopped on a Segway I thought ‘if I didn’t have my legs this would be the perfect thing I’d be adapting’,” Kevin said. He contacted Marcus, and over three years a wheelchair version of the Segway slowly evolved.



Marcus, who also has a background in engineering, became paraplegic after a skiing accident. While pushing the Ogo to its limits, he discovered some of the sensation and freedom of a motorbike – the leaning using natural body movement, and feeling part of the machine. “For a person with a disability, and those around them, it means freedom,” he said. Using upper body mobility and core muscle strength, the driver can lean forward, and the wheelchair moves forward; lean back and it reverses, or to the side and it swivels in that new direction. Unsurprisingly, Marcus has also had the Ogo in off-road tyres. After winning Innovate 2015 with the initial prototype, Kevin said the team are in development phase, using the generous donations that have come in from around the world. When they are in production it will help keep the price down for consumers.

Technology “We’re about keeping the Ogo as affordable as we possibly can – the price of some of the medical equipment in the marketplace is nothing but extortion to a large degree. I’m an engineer and have a good understanding of what these products cost to make.” As an inventor and engineer, Kevin always has projects on the go. He has worked in product design and mould-making in the plastics industry for the past 30 years. His website portfolio features a variety of design innovations – from a chilly bin, coffee cart, motorised kayak (for fishing) and kayak trolley, quad bike with a low centre of gravity, a street trailer and a tool box for metal trailers, pasture meter and sprayer, to a post box, eco bin, archery bow and dovecote.


“After testing the Ogo with varying levels of disabilities we’ve realised that with a few design adjustments, it can help many, many others,” he said. “But the Ogo is only the start – we want to specialise in being a development company that pushes boundaries with innovative designs – the disability market is under-catered for. “It’s about changing lives, not seeing how much money we can make.” The Ogo is on track to go into production by the end of the year, with the first run early next year. To find out more visit

The world’s first 3D-printed wheelchair was unveiled at Clerkenwell Design Week 2016 in London in May. Designer Benjamin Hubert of Layer Design created the made-to-measure GO Chair after months of research. LayerLAB is the studio’s new research division, founded in 2016 to investigate new applications for emerging technologies and materials with the potential to meaningfully improve quality of life. Its inaugural project is GO, a 3D-printed consumer wheelchair designed to fit the individual needs of a wide range of disabilities and lifestyles. The custom form of the seat and foot-bay is driven by 3D digital data derived from mapping each user’s biometric information. The resulting wheelchair accurately fits the individual’s body shape, weight and disability to reduce injury and increase comfort, flexibility, and support. The accompanying GO app allows users to participate in the design process by specifying optional elements, patterns and colourways, and to place orders. GO is the result of an intensive, two-year research period during which the studio interviewed dozens of wheelchair users and medical professionals to establish how to remove the stigma associated with wheelchairs as medical devices and create a more human-centred vehicle.

Marcus Thompson tackles off-road archery. Photos: Supplied



Time to do something new Anne Wilkinson, the longstanding chief executive of Waikato-based national social services agency Parent to Parent, left the organisation after 12 years at the helm and 25 years of involvement on March 18. Anne played a huge part in the development of Parent to Parent – initially as a parent of a child with autism. Her roles included local coordinator for nine years and national services coordinator for four years before taking on the chief executive’s role in 2003. She built on the work of predecessor Shirley Wass as Parent to Parent developed from a small group formed by a few parents and professionals in 1983 to a nationwide organisation with 28 staff and 600 volunteers. Anne said she’s loved Parent to Parent and it’s been a big chunk of her life “but it’s just time to do something new”. “To have been able to work in my area of passion has been amazing,” she said. “The growth has been huge but has been a team effort. I’ve worked with some amazing people, staff and volunteers. I’m still very passionate about my involvement in the disability sector and will continue to be involved.” In addition to Parent to Parent, Anne is a member of Enabling Good Lives’ Waikato and National

Leadership Groups and hopes to continue with this work. Anne was also a member of the Ministry of Health New Model National Reference Group, a former Community Living Trust board member, and was responsible for helping set up the Autistic Association in the Waikato and holiday programmes No Limits. Parent to Parent national president Helen Johnson said Anne has been an enormous contributor to the disability sector, is widely respected and has been instrumental in forming the many partnerships important to Parent to Parent. “The reason we’ve grown and been as successful as we have is because we work so closely with other organisations. “Anne’s has left us in fine fettle with the incredible growth we have achieved, and the fact that we are able to offer support to so many more families.” A change facilitator was appointed in March to help bed in new systems and structures to reflect the size of the organisation that now exists.

Lived experience and empathy help make critical connections The world is an increasingly complex and sophisticated place, but the essential part of a successful community organisation is maintaining old-fashioned personal contacts, said Anne Wilkinson. By GEOFF LEWIS

Anne resigned recently after 12 years as chief executive of Parent to Parent New Zealand. Originally from Carterton in the Wairarapa, Anne started her working life as an assistant social worker for the then Department of Social Welfare in the mid1970s. Parent to Parent had been established in Auckland in 1983 and her association with the group began with the diagnosis of one of her four children. “We had noticed unusual behaviour. She wasn’t assessed until she was four years old and we had expected the professionals to be able to fix the 18


issues. So we were shocked when the psychiatrist at Waikato Hospital who did the diagnosis, told us that she had autism and that it wasn’t going to go away. From there we were referred to the Community Living Trust’s behaviour assessment team.” It was from this experience that Anne began to develop an appreciation of, and empathy for, the grieving process experienced by parents of children with disabilities and the need to alleviate the feeling of isolation by bringing parents together and allowing them to share their common experiences. Along with a number of other organisations, Parent to Parent began at a time of upheaval around


Parent to Parent presented former CE Anne Wilkinson with a Lifetime Member award in Hamilton on April 8. She is pictured at the ceremony with her husband Russell.

services associated with people with disabilities including the great ‘deinstitutionalisation’ – the closing of old-style psychiatric hospitals and the movement of their residents into the community. Anne’s first association with the organisation came around 1990 when she took on the Waikato coordinator’s job, five hours a week, working from home. She joined founding CEO Shirley Wass several years later when the national office moved from Cambridge to Hamilton. There is no disguising Anne’s enthusiasm and satisfaction at the programmes established by Parent to Parent. “Some of our partnerships have been hugely beneficial for the organisation and for families – especially the partnership with Life Unlimited for the development of Altogether Autism “We worked with Imagine Better to put together Second Generation workshops for the adult siblings of people with disabilities, along with other projects. “We have worked with many organisations including IHC Advocacy in advocacy training courses for parents and siblings, CCS Disability Action and SAMS (Standards and Monitoring Service) in an important relationship delivering Care Matters programmes. “I think the value provided by the work done by Parent to Parent is huge and there is a real future for the organisation. It is in a really strong position and has great support programmes in place. It must stay current and move with the times, yet not leave people behind.”

That’s where the old-fashioned communications skills come in, as it is the personal connections that are key to the operation of the organisation. “The world seems to have gone in a circle, and as it gets bigger and more complex it is important to retain the personal associations and be able to get out and make networks.” One thing Anne won’t miss is the endless struggle to find funding faced by Parent to Parent and hundreds of community-sector not-for-profit organisations – a challenge which seems to get tougher by the year as demand for charity funding continues to grow. “Many charity funders are specific about what they will and won’t fund. This is where name, reputation and presence locally and nationally are essential,” she said. Anne has huge regard for the organisation which has played an enormous part in her life and the life of her whole family. Over the years several members have played important roles in Parent to Parent; husband Russell, an accountant, has helped out, and son, well known Hamilton actor and theatre director Nick Wilkinson continues to work as a facilitator for the organisation’s SibSupport programmes. “I have learned so much and am so grateful for the opportunities given to me to grow as a person, to learn and to get to know some amazing people. Most of my friends and family have connections to Parent to Parent.” A few years off the magic number, Anne does not regard herself as being retired. She has huge organisational experience and is looking ahead to new challenges. PARENT TO PARENT MAGAZINE • JUNE 2016


Welcome to new faces

Noel Cunneen Chief Executive

Noel has had more than 20 years of senior management roles in the education, health and disability sectors. Noel started as a secondary school teacher before moving into the community service sector providing training for unemployed people under the auspices of Waiariki Polytechnic. In 1992 he took on his first senior management role at what is now EIT Hawke’s Bay, where he managed a diverse range of student, staff and community services. These included regional centres, disability support, brain injury rehabilitation, community literacy and ESL, prison education, learning support, counselling and library services. In 2003 he became operations manager/ deputy CE for a large intellectual disability service provider based in Hamilton, and six years later worked as an operations manager for BUPA Care Services. In 2009 he took on the challenge of self employment, operating as a sole trader through EVP Recruitment Waikato, and offering a non-recruiting based service through his own management consulting business.

This is what led him to Parent to Parent earlier this year. Having accepted a consultancy project, a surprise occurred when the long-standing chief executive resigned, and the Parent to Parent Board asked if he would accept a temporary contract in that role, which has now been extended until June 2017. Noel has always maintained close links with the health and disability sector through his involvement as chair of the Waikato Health and Disability Expo Trust, which he established 10 years ago. In more recent times he has been working as a Contract Auditor in the health sector. In addition to his work experience, Noel has been on a number of boards for sporting organisations and managed/coached representative sides which competed at national tournaments. He remains an active sportsperson despite the years catching up.

Julie Barnett Executive Manager

Julie manages finance, human resources, health and safety and office administration. Born and raised in the Waikato, Julie is a Chartered Accountant with a degree in both Accounting and Management. Extensive experience in the Health Sector over the past 12 years, both at DHB level and working with non-government organisations, has provided her with valuable insight into the health and disability sector. Combined with substantial exposure to the challenges faced for health sector funding and service delivery, this experience has been instrumental in developing Julie’s strategic planning, quality improvement and system focus. With her


strong leadership skills and emphasis on building high performing teams, Julie is far from the stereotypical ‘bean-counter’. Julie is passionate about improving the quality of life within communities, while ensuring sustainability and efficient use of resources. While ideas are never in short supply, Julie admits “a good idea is nothing without a great team”, and believes the greatest assets in an organisation aren’t found on the balance sheet. On a more personal note, Julie and her partner David have two children. Weekends are about quality family time. They enjoy bush walking on Waikato’s fabulous walkways and the traditional Sunday roast.

Guy Ockenden National Operations Manager

For the past 11 years Guy has been CEO at NZ Riding for the Disabled in Wellington. He and wife Val had planned for some time to move to the Waikato to be closer to family – a big change after having lived in Wellington for the past 17 years, however, they both love the Waikato and for Val it will be like coming home. Originally from Hawke’s Bay (Waipukurau), Guy was educated there before earning his first degree at Otago University. After a year at the Christchurch College of Education he taught for three years in Greymouth. A change of direction saw Val and Guy move to Christchurch where he spent the next five years working professionally as an actor and director, as well as being artistic director for the Polynesian Performing Arts Trust. Following this he returned to teaching at Rangi Ruru Girls’ School, and undertook further study completing his Master of Business Administration (with distinction).

They moved to Wellington so he could take up the role of national director for the Young Enterprise Scheme, later also coordinating the Enterprise Studies Programme, before moving to the Duke of Edinburgh’s Award as executive director, then on to NZ Riding for the Disabled. Guy has a passion for creating opportunities for the teams he works with to develop and grow, so they are able to deliver the best service for those that come to Parent to Parent. “Providing them with the outcomes they need is rewarding and motivating, and I know that this new opportunity with Parent to Parent will be inspiring, providing me to further develop the skills I bring to the position.”

Ruth Taylor Programme Coordinator

Ruth returned to Parent to Parent a few months ago after five years away. In that time her previous role of Training Coordinator changed to Programme Coordinator. Emigrating from the UK in 2006, Ruth has stubbornly retained as much of her accent and vocabulary as possible – this allows those who phone her to be very sure of who they are talking to. “Having worked for Parent to Parent in the past it has been interesting to return and find out what has and hasn’t changed,” she said. “It has been great to see the continued positive response to the training being provided – seeing the difference that our workshops and courses can make to a person’s self confidence and understanding is truly inspiring.”

Since her last stint at Parent to Parent, Ruth worked for a vocational day service provider. She said the opportunity to work with individuals with a range of intellectual disabilities was educational, and with current changes in the disability sector, exciting as well. “I have got a little older, have taken up indoor rock climbing (along with my daughter); found an inner jogger (so I could survive my recent Outward Bound experience) and self-published two books on my parenting journey. “I am passionate about training, facilitation and the parenting role, and look forward to seeing training back on the agenda in a big way.”



Thank you StarBuddy! Founded in 2014 by Waikato country entertainer Joy Adams, the StarBuddy Charitable Trust accepts donations – or StarPledges – and distributes them back into the donor’s region. The funds go to local charities, groups and schools, St John Ambulance, and to provide something special for children with disabilities or health impairments that can be disabling. Spreading goodwill nationwide, StarBuddy then holds community presentations that bring the donors, St John, families and charities together. Often there are trucks, sports cars and ambulances, and Joy and other artists perform from time to time.. Over the past two years $24,000 has been donated, benefiting 48 children nationwide. The largest portion of a StarPledge goes to the charity, group or school closely associated with a nominated child; a portion to the local St John, and nominated children get a gift or treat tailored to their needs. Joy recently asked Parent to Parent to nominate five children in Taranaki and two in Morrinsville . “When mums were phoned to tell them their child was nominated, they were almost speechless, particularly those living somewhat isolated in remote areas,” said spokesperson Sue Pairaudeau. “They just don’t get phone calls out of the blue to say their child with a disability has won a special treat. It meant so much to them.” The presentations were fun family events where the Stratford deputy mayor and country music clubs from

Entertainer and StarBuddy founder Joy Adams (right) donates money to benefit Parent to Parent families in Taranaki

New Plymouth and Hawera turned out to celebrate Maycee, Cooper, Oliver, Rebecca and Jordan receiving movie, Splash and Mega Bounce passes and goodies. In Morrinsville boys Luke and William left with wide smiles after receiving Waterworld and Toyworld vouchers, and a truck ride thanks to Norman’s Transport driver Ben Fisher. “We’ll use the $1125 to hold a family day or workshop in central Taranaki, and the $450 for Morrinsville will also benefit families living with disability.” Donors to date have come from private donations, service clubs, music clubs, RSAs, rest homes, Lions, the Warehouse, and from sales of StarBuddy merchandise. For further information check out or to get a copy of the StarBuddy Compilation CD featuring 15 Kiwi artists including Joy.

GOOD IN THE HOOD: Thanks very much to Z Energy Liverpool in Hamilton and everyone who voted for us – $450 is a very small fortune that can go a long way and we appreciate every single cent. Pictured is our national office management crew (L-R) national operations manager Guy Ockenden, business development manager Sue Pairaudeau, chief executive Noel Cunneen and executive manager Julie Barnett. Special thanks to Wintec for providing the photo shoot venue. Photo: BROOKE BAKER


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. 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

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

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 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.”

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“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!”

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