CHAT 21 Autumn 2018

CHAT 21 CO M M U NICAT IO N | HOL ISTIC | ADVOCAC Y | TAONGA

Issue 73 Autumn 2018

New Zealand Celebrates WDSD In Style

Journal About & For The New Zealand Down Syndrome Community ISSN 11776323

Our Faces, Our People

Contents

From The Editor

From The Editor

3

National Executive Officer

5

President’s Pen

8

Working Up A Zumba Sweat In Christchurch

9

World Down Syndrome Day Is A Chance To Change Attitudes

10

Auckland DS Community Enjoy Buddy Walk Festival And Raises $10,000

12

Entertainment Extravaganza At Wellington Celebrations

13

Disability Sector To Drive Revolution

14

NZDSA Self-Advocates Send Video Message To Health Professionals

16

Down Write Brilliant

17

Update Report From The Disability Consumer Consortium

21

National Summer Games Huge Success

22

Manuwatu Athletes Pick Up Sports Awards

27

Duncan Armstrong claims Best Performance Award at Auckland Fringe Festival

28

Car Karaoke Video Creates Global Youtube Sensation

30

IHC Book Reviews

31

NZDSA Notices

32

NZDSA Resources

33

Contact Directory

34 This issue of CHAT 21 was made possible with donations from Southern Stars.

It is pleasure to bring you this autumn edition of CHAT 21.

My name is Coen Lammers and I have been asked to step in as guest editor for this edition as outgoing editor Jessica Harkins embarks on her new adventures.

It was hard for me to turn down the invitation as I have been heavily involved in the Down syndrome world since the birth of our daughter Bella, 16 years ago now.

Bella has two younger brothers and enjoys an incredibly exciting and versatile life in our home town of Rolleston.

She is a Year 11 student in the Waitaha School satellite class at Rolleston College, a long-time member of the Jolt dance group, works at a local café two afternoons each week, won a few medals at the Special Olympics Nationals last year and loves going to the UP Club evenings with her friends with Down syndrome.

Our Bella is the living proof that anything is possible for any person with Down syndrome and we can’t wait to see what adventures she will take us on in the coming years.

All our families know that this journey is not always easy and battling the constant obstacles got me involved as a committee member of the Canterbury Down syndrome Committee about 12 years ago in an advocacy role.

It has been exciting to see how the opportunities for people with Down syndrome are increasing with each passing year.

I grew up with an uncle with Down syndrome in the Netherlands, so have been part of the Down syndrome community all my life and have seen how limited the prospects and how low the expectations were for my uncle Jos in the 1960s and 1970s.

Unlike most new parents with a child with Down syndrome I was fortunate to have had that family experience to fall back on and realised that Bella’s disability was not the end of the world, but merely a different pathway than our other children.

Disclaimer Through the quarterly Journal, the New Zealand Down Syndrome Association will attempt to report items of interest relating to Down syndrome. The NZDSA does not promote or recommend any therapy, treatment, agency, product, political position, religion or advice. The opinions expressed in CHAT 21 are not necessarily those of the NZDSA. The editor reserves the right to make corrections to materials submitted for publication. All photos sent in to the journal become the property of the NZDSA and can be used in other NZDSA publications.

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“Our Bella is the living proof that anything is possible for any person with Down syndrome and we can’t wait to see what adventures she will take us on in the coming years."

I have written about Bella’s journey a bit in the past during my years as deputy editor at The Press in Christchurch and as editor of the Ashburton Guardian, trying to do my bit to raise awareness in the wider community.

Interestingly, the story I did on Bella when she turned 10 is still one of my most rewarding pieces of work. Several months after the story was published I was contacted by a woman in England who had just become a grandmother of a girl with Down syndrome and she told me the family had virtually gone into mourning.

In some way, she got hold of my story through a friend in New Zealand and she said that reading about Bella had given them all hope for the future and the knowledge that things would be okay. Despite many decades in journalism, it was only that moment that the power of the word really struck me.

After leaving my last newspaper role in 2014, I now work as an advisor to assist organisations and companies in telling their stories and sharing them with their communities. It is a different career, but I love the fact that I am probably closer to my passion of writing stories than during my days in newspaper management.

CHAT 21 | Issue 74, Autumn 2018

That is why I have enjoyed putting together this journal with a nice mixture of serious issues like the Transformation of the Disability Sector and the fun events like World Down syndrome Day and the Special Olympics National Games with plenty of photos and faces.

Please also make sure you read about the amazing things our community members are up to, on stage, on the sports field, in the waters of Niue, representing our country or representing the Down syndrome community on Government forums.

Coen Lammers

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National Executive Officer Kia Ora I hope that you have had a wonderful start to 2018.

I have had the privilege of working with so many inspiring people this quarter as well as working on a number of different events and projects.

In January the key calendar events Ride for the Kids 2018 held in the Manawatū, and a trip to New Plymouth to meet with Dr Surekha Ramachandran, President of the Down Syndrome Federation of India.

February was another busy month with STRIVE and Self-Advocacy Workshops hosted in Auckland, the filming and editing of "Dear Health Professionals" and the NZDSA National Committee Meeting in Christchurch.

The primary focus in March of course was preparing and celebrating World Down Syndrome Day and an NZDSA team meeting in Christchurch.

The month of February included the news that our long-standing editor, Jessica Harkins, had made the very difficult decision that it was time to resign from her role so that she can pursue other interests. I am sure that you will join me in thanking Jess for all her contributions to CHAT 21 and the NZDSA and we wish her every success in the future. We know that whatever she does she will continue to be a strong advocate for people with Down Syndrome. Thanks again Jess for all your contributions to the Down syndrome community.

I am sure that you noted that this edition of CHAT 21 was produced by guest editor Coen Lammers.

Thank you Coen for creating this edition of CHAT 21 which includes a number of contributions about World Down Syndrome Day celebrations. In keeping with this theme, I have selected a few related events to report on below.

International Visit

The NZDSA is a member of the Asia Pacific Down syndrome Federation (APDSF) and while it isn’t always possible to attend all the APDSF meetings we do contribute and engage with countries in this region.

This year my first work commitment was a meeting in New Plymouth with Dr Surekha Ramachandran, President of the Down Syndrome Federation of India and valued member of APDSF.

National Executive Officer

This meeting was an opportunity for us to collaborate and learn from each other as we shared ideas on what we do, how we support people with Down syndrome and their families, our aspirations, our challenges, our advocacy role and how we can work together in this region to empower people with Down syndrome to realise their potential and aspirations.

Dr Surekha Ramachandran spoke at the General Assembly of the United Nations on March 19 and included the following statements and said that “many countries today are looking towards genetic culling to terminate pregnancies which show any genetic anomalies.” and “This devaluation of life to cleanse the world of anyone who may have a disability is something the human rights-respecting world should not approve and should therefore condemn in the most appropriate manner possible”.

She urged the United Nations Human Rights Commission to “step in to support and respect the lives of people with Down syndrome and help spread awareness towards promoting the human rights of people with Down syndrome”.

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World Down Syndrome Day 2018

How did you celebrate World Down Syndrome Day? I celebrated the event with the Manawatū Down syndrome community and supporters at the launch of the “Dear Health Professionals” video. The screening was a wonderful opportunity to focus on “What I bring To My Community” - the global theme for WDSD 2018.

These were a few things that we shared that people with Down syndrome bring to their community • Friendship • Courage to face challenges • Cooking great meals • Role models • Loyalty • Acceptance • Patience • Work ethic • Honesty • Joy • Kindness • Teamwork I would invite you to send in your stories of “What I bring to my community”. Don’t forget to include your photograph so that we can publish your contributions in the next edition of CHAT 21.

CHAT 21 | Issue 74, Autumn 2018

I would like to express my sincere thanks to everyone who hosted and supported WDSD celebrations

This edition of CHAT 21 highlights a few of the wonderful celebrations hosted in New Zealand and if you would like to see how this event was celebrated around the globe, then view World Down Syndrome Day on the Down Syndrome International website worlddownsyndromeday.org/ You will be able to view the WDSD conference at www.un.org/en/events/downsyndromeday/ or worlddownsyndromeday.org/wdsd-conference

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Dear Health Professionals

Did you view and share the NZDSA's latest resource “Dear Health Professionals”?

A few years ago the STRIVE leadership group developed a declaration regarding Health which they wanted to share with health Professionals.

So we decide to combine their key messages with the 2018 global WDSD theme #What I Bring To My Community.

The script was developed by combining key messages from STRIVE and the personal stories of 14 self-advocates. All the footage for the video clip was filmed on the 2nd of February 2018 in Auckland.

I think you will join me in congratulating the talented stars featured in the video clip. A special thanks to the crew from Borderless Productions who helped the NZDSA produce this resource. The purpose of producing this video is: • to promote greater awareness about Down syndrome • to create the opportunity for people with Down syndrome to speak up and share an advocacy message with Health Professionals.

• to challenge Health Professionals to join them in sharing what they bring to the community.

We hope that you will share this video clip within your community.

General reminders

Request – please would you forward your email address to National Office.

The NZDSA office receives numerous notices, training opportunities or special events that you might be interested in but they often have short response times so we need to forward information to you promptly. Unfortunately, the cost of postage prevents us from posting regular updates but we do send out e-news updates. We only have a small percentage of email addresses so if we don’t have your email address, please would you forward it to me at neo@nzdsa.org.nz or Linda at nzdsai@xtra. co.nz.

Rose Award

This quarter I have nominated Roseanne Boddy, EASIE LIVING CENTRE CO-ORDINATOR, Enable New Zealand for hosting the NZDSA WDSD celebrations.

These awards provide the opportunity to thank individuals or organisations who either support individuals with Down syndrome or the Down syndrome community.

Please email me neo@nzdsa.org.nz your nominations for an individual, family, or organisation explaining what they have done to “promote the participation of people with Down syndrome in their community”.

National Executive Officer

I will acknowledge the person in CHAT 21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.

How you can support the NZDSA

We believe that you can assist us in extending our core services as you may know of individuals or businesses who would like to support the work of the NZDSA by considering partnering with us to not only provide our ongoing core services to the community, but also to realise our vision to address even more community needs and to implement projects which will enable people with Down syndrome to be fully included in their community.

These individuals might consider providing either service support, resource support, product support or even financial support. Financial support might be in the form of assisting with fundraising, considering a workplace giving scheme or sponsoring the NZDSA. If you can help us in this area please would you contact me on 0800 693 724 press 1 or national. coordinator@nzdsa.org.nz

Share your stories

I would like to invite all our members to forward their stories and photographs so that the NZDSA can feature your story or photograph in CHAT 21.

Hei konei rā Zandra

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President’s Pen Hi Everyone Happy New Year to you all!! I hope you managed to enjoy a break over the Christmas holiday period and the first quarter of 2018 has started off well for you.

Our year started off well. In February, Jeff and I took Rochelle to Auckland for her first major rock concert – Adam Lambert and Queen. I made sure to get seats on the floor, as we would have had great difficulty in getting Rochelle up the steps in Spark Arena due to her fear of heights. What a fantastic night Rochelle had. She was up dancing and singing for the whole of the concert and in heaven at seeing Adam Lambert in person, as he had appeared on “Glee”, one of her all- time favourite programmes. It made me think what a long way she has come from the little girl at primary school who used to go to the school discoes and end up helping the PTA to sell the chips and drinks out the back of the hall as she hated the loud music!!!

I hope you all managed to celebrate World Down Syndrome Day (WDSD) in March in some special way and I hoped you managed to view the video clip launched in time for WDSD in which fourteen of our young members participated in getting their message to Health Professionals out there? This year’s theme was “What I Bring to My Community” and I thought this was a great theme to make us all think about the wonderful things children and adults with Down syndrome bring to their communities – joy, diversity, inspiration, achieving goals, just to name a few. Of course, we celebrate every day but it’s great to have a dedicated day to make us all feel proud to be part of such a cool community.

I attended the WDSD celebrations in Christchurch where the Canterbury Down Syndrome Association hosted a wonderful afternoon of Zumba, a “bubble lady” who was blowing huge bubbles for the younger members (although the older members enjoyed this just as much) finished off by our very own Josie Noble, aka DJ Josie, who raised the roof with her fabulous music. There was an ice-cream van to cool down the dancers with real fruit ice cream and a coffee van for those of us who needed a coffee fix for the day!!

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WDSD is always a good way for families to reconnect and chat to each other about the different stages of the age groups represented. As the parent of a young adult, I love seeing the pre-school/primary school age children and being reminded of how cute Rochelle was and the joy she brought to our family with her antics (and still does), and I enjoy being able to reassure the parents of younger children that their children have a great future ahead of them with the right supports in place. I think about how far Rochelle has come over the years with great family and community support and how the time has seemed to just fly by from the day she was born and all the initial worrying we did as parents as to what her life would look like. She often says she loves her life which, as a parent, is just what you wish for all your children.

Please now sit back and enjoy the rest of your read of CHAT 21. For this edition we are fortunate to have Coen Lammers as our guest editor. Coen is a very experienced journalist and we are very thankful he agreed to take time out of his busy schedule to help us out with this edition, as Jessica Harkins, our former Editor of CHAT 21 has resigned due to other commitments. I would like to acknowledge the work Jessica did in producing some wonderful editions during her time with the NZDSA and wish her all the best with her future endeavours.

Please feel free to email the NZDSA with any ideas for future articles you would like to see in CHAT 21 or submit any stories or experiences you have had along your journey that you would like to share with our readers.

Take care Shelley

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World Down Syndrome Day 2018

Working Up A Zumba Sweat In Christchurch

By Andrew Oswin

The Canterbury Down Syndrome Association celebrated World Down Syndrome Day on March 25, at the Matuku Takotako Sumner Community Centre.

We all had such a lovely and sunny day with so many people of all ages who participated in interactive activities.

Some Zumba instructors got us motivated to get involved with Zumba which music got played from the stereo, some of us played with mixture of bubbles, had an ice cream from the Real Fruit Ice Cream truck, a drink of coffee from the coffee cart and DJ Josie put on a lively disco so that everyone could have a dance.

The workers from Real Fruit Ice Cream made 83 ice creams and that is really huge.

The Press media got involved with film and photograph coverage and I got interviewed twice by them.

I really enjoyed celebrating World Down Syndrome Day with my friends and fellow colleagues from the Canterbury Down Syndrome Association.

I would like to thank the Real Fruit Ice Cream workers

World Down Syndrome Day 2018

and the coffee cart workers for their generous hospitality. I would also like to thank the Zumba instructors teaching us how to do Zumba, the Sumner Community Centre for giving us the hire of the venue and to Josie Noble for the disco.

A very special thank you goes out to Diane Mulholland and Donna Higgs for helping with the organising and to The Press for the coverage.

Andrew Oswin STRIVE Editorial Committee Member ChristchurchÂ

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World Down Syndrome Day Is A Chance To Change Attitudes New Zealand’s Disability Rights Commissioner Paula Tesoriero asks for attitudes toward disability to change and encourages the celebration of the lives and achievements of people with Down syndrome.

My time in the role as Disability Rights Commissioner has confirmed what I already knew: that attitudes towards disability in New Zealand need to change.

And what better day to reflect on this than today, World Down Syndrome Day. This year, people with Down syndrome are speaking out in a new campaign #WhatIBringToMyCommunity.

It is a movement to empower people with Down syndrome to speak up, be heard, influence government policy and action and be fully included in the community.

As so many social movements have shown us, they need a ground swell of support to create impact.

People with Down syndrome face numerous barriers in day-to-day life that will never be broken down without our full support.

It saddens me that we need this movement at all. We should all know that disabled people have value in their community.

Today, I want every New Zealander to stop and think about disability through a different lens than you might have previously. We need to challenge assumptions made and attitudes held about New Zealanders with disabilities.

People often think people with Down syndrome can’t work, live independently or be in a relationship. Many people with Down syndrome do all of these things.

They have their own flats, they have partners, and jobs, and they run successful businesses. They have goals, challenges and aspirations, just like any person does.

Yes, they may have barriers that others don’t. But they face their challenges and keep pushing to achieve their goals and aspirations just like any other motivated person does.

People with Down syndrome make meaningful contributions throughout their lives, whether in

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schools, workplaces, living in the community, public and political life, culture, media, recreation, leisure, sport and in dance. But to ensure these options are available to them, support is needed.

Last weekend, one of my team visited a dance group in Palmerston North. Each of the 15 dancers have Down syndrome. The group was started by a young woman who wanted her sister to have the same opportunity to dance as she did. Ten years on, the dancers hold bi-annual sell out concerts. As I was being told about the group, one particular comment from a dancer called Lily struck a real chord with me: “I feel like most people with disabilities are an outcast [in a play]. The others without disability are main parts. I think they should let us have a chance to do something that we want to do.”

“We should have a chance. They should be [cast as] an outcast and see how we feel.”

The New Zealand Down Syndrome Association is launching a video today that aims to change these discriminatory attitudes. “Dear Health Professionals” is a video that features 14 self-advocates from the Down syndrome community sharing a message.

Their message is simple: “We’re all different and unique, we all have value, and everyone has the right to live a happy and healthy life.”

It’s well-established that many people with intellectual disabilities, including Down syndrome, are still not getting their rights to health, education, and community living completely fulfilled. Their life expectancy is less, they struggle to get a fair deal at their local school, and despite the closing of residential institutions, many people do not get to choose where, how, and with whom, they live.

As a community, we need to reach out to our educators, employers, public authorities, media outlets and the wider community to bring about a change in attitudes. We need to ensure they all see the benefits of enabling people with Down syndrome to make meaningful contributions.

As Disability Rights Commissioner, I’m strongly focused on how we shift attitudes towards disabled people in New Zealand and part of that will be a

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social change campaign I am hoping to launch in the coming months. A campaign I’m keen for all New Zealanders to be a part of.

My view is that attitudes towards disabled people remain at best indifferent, and at worst, discriminatory. These attitudes underpin how disabled New Zealanders are treated and valued for their contribution to society.

The changing of attitudes towards disabled New Zealanders is so much more than just a “nice to do”.

Currently 42% of disabled young people aged between 15-24 are not engaged in education, employment or training and the unemployment rate of disabled people is twice that of non-disabled.

Turning these statistics around is critical.

It is estimated that addressing accessibility barriers to employment would contribute $862m of GDP to New Zealand.

On World Down Syndrome Day, let’s celebrate the lives and achievements of people with Down syndrome and advocate for their rights, inclusion and wellbeing.

Let’s also acknowledge that if we all play our part in addressing underlying attitudes towards disability, we can change outcomes for disabled New Zealanders.

Commissioner. It is her role to champion and protect the rights of disabled New Zealanders.

This article was originally published in the The Spin-Off who kindly agreed for Chat 21 to reproduce this story.

Paula Tesoriero is NZ’s Disability Rights

World Down Syndrome Day 2018

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Auckland DS Community Enjoy Buddy Walk Festival And Raises $10,000

By Diane Burnett

Buddy Walk, which involves a scenic walk 3.5km around the base of Mt Eden/Maungawhau, is a day for families to enjoy and celebrate the people with Down syndrome in our lives.

It is always such a wonderful event and this year again was no exception.

The entertainment kicked off from 9am with music, food and coffee, followed by a welcome from MC Nik Brown and ADSA President Natasha Gould, before an energetic session of JUMP JAM to warm-up.

At 10am the walk started with a loud blast from the starter gun, with the super keen and fit running on ahead and the relaxed families with young ones in prams and on shoulders bringing up the rear.

Less than half an hour later the leaders crossed the line to a well-deserved banana and a fabulous certificate to recognise their achievement, with the last of the walkers ambling in around 11.30am having had a laid-back and social stroll.

The kids proceeded to enjoy the field entertainment – the bouncy castles, a merry-go-round and farm animals, face-painting, Alan the Bubble Man, a 5D cinema and Captain Crunch the Clown.

In addition, there was a special area for our preschool children with playdoh, a small ball pit and numerous toys including ride ons and a mini rollercoaster.

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Meanwhile, the adults lined up for a sausage or burger from the sausage sizzle, or a plate of Mediterranean street food from the Mama Tahina food truck. Also on offer was a selection of cakes, muffins and sweets from the cake stall, ice-cream in a cone and a choice of cold drinks.

The on-stage entertainment included a talented Ukulele band and, from some of our members with Down syndrome, a fabulous hip-hop performance, an excellent session on the drums and a wonderful song recital.

Three of our young adult members were involved in making the hard decision of who would win the ‘dress-up as your favourite character’ theme prizes for best pre-schooler, best school age, best adult and best group categories.

Aside from raising awareness, the Buddy Walk was also about raising funds. Throughout the day people purchased raffle tickets to win one of seven grand prizes, bid on more than a dozen silent auction items or services, and bought a lucky dip to get a bag of surprise treats.

In total nearly $10,000 was raised from the event, which will go towards social club events for members of all ages and library resources.

Of course, an event as big and entertaining as this only comes together with a lot of hard work from a team of dedicated volunteers. This year we’d like to specifically thank Kirsten McDonald, Philip Venables,

Jan Caircross, Rachel Batters and Angela Owen for everything they did to run this project for another successful year.

We also send a big thank you to the 30 plus walk marshals, who kept everyone safe and heading in the right direction along the route.

To Annie Williams, her sister Marie, Lianne Versluis and Nigel Owen for organising and managing the BBQ and cake stall. To Natasha Gould and Christel van Baalen for their support before, during and after the event.

And lastly, to all the members, families and friends who came, enjoyed and supported this fabulous day.

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World Down Syndrome Day 2018

Entertainment Extravaganza At Wellington Celebrations Members of the Wellington Down syndrome community celebrated World Down Syndrome Day (WDSD) on March 25 at The Dell in the Wellington Botanic Gardens.

Following days of drizzle and heavy rain, the weather magically cleared on Sunday morning, and the sun came through, the wind stayed away and the ground was firm and dry.

A wonderful crowd of 150 members and friends of the Wellington Down syndrome community enjoyed

World Down Syndrome Day 2018

a day that was filled with an amazing programme of events and entertainment, and of course, plenty of food, including a cake decorated in purple and orange.

One of the highlights was the first public gig of the Alex Walsh Band. Alex has Down syndrome and is an accomplished saxe man.

The audience was not allowed to sit still and was soon invited by Dean from Dances for Schools to get involved in a Hip-Hop dance tutorial, which gave everyone a good workout.

The entertainment just kept coming with two groups from Star Jam, City Jazzy Jammers and the Groovy Guitars, performing dance and musical sets.

They were followed by the JDK Crew, who busted out a high energy and tightly choreographed routine that would not have been out of place at any professional dance event.

While the music and dancing continued, the children were able to play on the equipment that was generously supplied for the day by Anatoa and Ariana from Compass Health.

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Disability Sector To Drive Revolution The disability sector is on the brink of the most exciting transformation in New Zealand history, aiming to improve the quality of lives for disabled people and their families.

The new system wants to offer disabled people and their families more options, more decision-making and more effective interaction with Crown agencies.

The disability sector has been calling for change for a long time, as the disabled people feel that their lives fit around the system, instead of the system enabling their lives. There have also been concerns about a lack of options for support being allocated services without choice, having to repeatedly explain their lives to different agencies and what was going on in their lives and having to battle for support that they are legally entitled to.

In response to these concerns a group from the disability sector presented a vision and principles called Enabling Good Lives to the then Minister of Disability, Tariana Turia.

After three years of discussions and workshops with disabled people, families, Crown agencies and service providers, a new vision for the disability sector was presented to the Government and is set to be signed off by Cabinet and to be trialled in the MidCentral area this year.

MidCentral is an area which covers Palmerston North, Horowhenua, Manawatū, Ōtaki and Tararua districts in the central North Island.

In 2020, the programme is expected to be expanded to Canterbury, Waikato and the Bay of Plenty.

The core vision behind the system transformation is to avoid disabled people having to deal with numerous agencies to access their services.

Instead, the new system envisages for the different funding streams to be bundled and for the disabled person and their families to decide where best to use this funding and what service provider they want to use.

In the new system the families will be supported by a Connector, to become their advocate and the navigator through this new system.

Currently, most families will have interactions with the likes of the Ministry of Health, the Ministry of Social Development, the Ministry of Education, Life Links, Idea Services, Manuwanui, ACC and many others, but going forward the families are expected only to deal with their Connector instead.

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The goal for this new system is to Enable a Good Life.

The transformation started last year with a threemonth project in which representatives from the Ministries of Health and Social Development worked alongside the disabled community to design a process for a nationwide transformation of the disability support.

The group was made up of five disabled people, two family representatives, two service providers and four Government officials and came together for ten workshops over two months.

The starting point for the group was to create a high-level design for a system that delivers the best experience for disabled people and their family/ whānau. It will be built around the following core elements.

• A w e l c o m i n g e n t r y – p e o p l e a r e welcomed into the system, provided with information, linked with a Connector, peer network, government agency or disability organisation.

• Access to a Connector - someone who can walk alongside disabled people and whānau to help them identify what they want in their lives, how to build that life, and the range of supports available to live that life.

• Connected support across government – you talk to your Connector about what you need and the Connector talks to a Government Liaison person to access other government services (e.g. benefit applications), and to build positive relationships with other parts of government (e.g. learning support in school).

• Easy to use information and processes.

• A straightforward process for accessing funding, with flexibility about what can be purchased and easy reporting on how funding has been used.

• Capability funding for disabled people and their whānau to build their leadership skills.

• Greater system accountability - disabled people and their whānau are involved in monitoring and evaluating the system so they can check if it is working well.

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The new system will put decision-making in the hands of disabled people and their whānau. It will increase flexibility, remove rules, and offer opportunities for support you want.

After this high-level work was completed, over 20 working groups were set up to develop the detailed design for the new system. At least a third of each working group was made up of disabled people.

The individual working groups focused on specific areas like: • Disability information front end • Capability building for disabled people and whānau • To information tools and pathways • Safeguarding • Network building • System responsiveness • Scope of funding • New system team roles • High and complex • Provider analysis and capability Other working parties focused on the interactions with government agencies, including: Health, Education, Ministry of Social Development, ACC, Oranga Tamariki.

This year, more working groups will be set up to look at Tax, Market shaping, Brand and identity, and Whānau Ora.

Get involved to transform the disability sector The changes in the disability sector are not instigated at Government level but driven from inside the sector so it is vital for the sector to get informed and get involved.

Disabled New Zealanders, their whānau and service providers can get involved in one of the virtual testing groups to provide feedback and ideas. If you are interested, please contact the project team at STfeedback@moh.govt.nz.

In Canterbury the Enabling Good Lives team and project coordinator Sasha O’Dea from the Ministry of Health have been conducting workshops with the local disability sector inform them about the programme and to create a Governance Group that will be in charge of the pilot programme to be rolled out in 2020.

Disabled people and their whānau are invited to a meeting on April 19 where people can put their hand up and be elected to be part of this Governance group. It is imperative that as many people as possible attend to get the best people on this group and get a genuine representative of broad section of the sector.

NZDSA members who want to receive updates on the systems transformation through the NZDSA Enews need to forward their email to nzdsainfo@xtra.co.nz Project coordinator Sasha O’Dea is planning live online Question and Answer sessions about the Systems Transformation and anyone who wants to participate in these session can email the NZDSA for dates and times.

The systems transformations team at work

Disability Sector To Drive Revolution

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NZDSA SelfAdvocates Send Video Message To Health Professionals During this year’s World Down Syndrome Day, the New Zealand Down Syndrome Association launched a new awareness video that celebrates diversity at a special screening in Palmerston North.

In "Dear Health Professionals" 14 self-advocates from the Down syndrome community throughout New Zealand invite and challenge Health Professionals to join them in sharing what they bring to the community.

These self-advocates include Abigail, who has just secured employment after completing a certificate at Unitec, Edward who has experienced “a few health challenges,” which haven’t stopped him from winning a gold medal for New Zealand in the Special Olympics, and Alex who is fluent in Te reo Māori and teaches kapa haka in the community.

Zandra Vaccarino (National Executive Officer, NZDSA) explains why the NZDSA has targeted the health professionals in this video: “Health and Allied Health professionals have a crucial role to play in correcting myths and changing society’s perceptions and narratives about Down syndrome, while also providing valuable and appropriate health care and support.”

The awareness video is part of the international #WhatIBringToMyCommunity campaign, led by World Down Syndrome Day - worlddownsyndromeday.org/ The aim of #WhatIBringToMyCommunity is to empower people with Down syndrome to speak up, be heard and influence government policy and action and to be fully included in the community.

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“Dear Health Professionals, we’re here to share a message. We’re all different and unique, we all have value, and everyone has the right to live a happy and healthy life.”

After the special screening in Palmerston North, the attendees enjoyed some food and shared what they all bring to their community.

The main themes that popped up during that discussion were: • Positive attitude • Great meals • Sincere • Honesty • Laughter • Love • Unique perspective on life • Infectious smiles • How to manage stress • Persistence • Help others • Appreciate life • Consumer • Adventurous • Creativity • Positivity • Service • Encouragement • Trailblazers • Spunk

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A Magazine By People With Down Syndrome, For People With Down Syndrome.

Luka Takes On The Charms And Challenges Of Niue

By Angelique van der Velden

Down Write Brilliant

01

Our family headed ‘off grid’ and went to the exotic island of Niue. What we found was a simple island with charm but also challenges.

Niue came with the expected sunshine, warm temperatures and locals with hearts of gold. We enjoyed the music, culture, the glistening warm sea and striking beauty, along with the lack of wifi and limited shopping. What a treat for an autumn holiday getaway.

However, Niue is isolated. Just two flights travel to Niue each week and only one container ship berths in Niue each month, weather permitting. Everything from food to fuel comes in either by air or sea. When supplies run out, then you do without.

Niue is a coral atoll so you have to dress to protect yourself. Have you ever walked over sharp coral (in flippers), or snorkelled between gagged rocks and caves? Any coral cuts need to be treated seriously or infection sets in.

The coast is surrounded by steep cliffs so you have to be daring and dive or jump from great heights to reach the warm seas.

The sea is tidal so you can be sucked out to sea or thrown up on the sharp rocks.

The ocean is full of wonderful sea creatures including dolphins, turtles and whales but when you snorkel you also swim amongst sharks and sea snakes.

Luka took it all in his stride. He spent the majority of his holiday under water. He jumped off cliffs, clambered over sharp coral outcrops and swam through caves often surrounded by curious sea snakes. Despite his fear of these, he snorkelled for hours and then took on the ultimate challenge - Scuba diving.

Luka, Kirah (Luka’s sister), and Eric did a morning of Scuba diving training. They learnt how to use the diving apparatus (tanks, mouthpiece), equalise their ears, practised diving sign language which was a breeze for Luka and then tested it all out in the pool.

The instructors had a wonderful approach. Within their strict safety guidelines, they let Luka set his own limits.

By afternoon they put it all together and did a reef dive out at sea.

Amazing.

I have to say I had to hold back my panic. So much could go wrong and that included drowning. However, both Luka and Kirah revelled in the beautiful underwater world. They dived deep and long and came up smiling.

This moment reminded me that many outdoor challenges can give children positive feelings of self-worth and pride that they can’t always find elsewhere.

The photos tell the story.

Down Write Brilliant

02

Rocking The Spark Arena With Queen

By Rochelle Waters

My parents and I went on the plane from Christchurch to Auckland to go to see Adam Lambert and Queen.

We stayed in an apartment and I had a room all to myself with a TV in it as well.

Before we went to the concert we went into the restaurant for dinner and I had a burger for my meal.

After that we walked to the Spark Arena to see the concert and it was amazing with all the special effects and I sang and danced all night.

Adam Lambert was very good at the concert.

He sang the Queen songs brilliant and Queen were really good as well.

I had the best experience at the concert because it was fun and I really enjoyed it and I knew all the songs.

Down Write Brilliant

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"People with Down Syndrome that have a BRAIN, ARMS and LEGS they can do all sort of things"

Self Advocacy

By Carlos Biggeman

Last year 2016 at the Key Skills Funshop I’ve learned lots of interesting subjects but the part that I liked the most was about Self Advocacy.

Here is some of information that captured my attention.

• • • •

Self Advocacy can bring people together to share some ideas and their support.

Self-advocates organise and train for members to speak about Self Advocacy.

S e l f - a d vo c a te s c a n b e a p owe r f u l association around in their communities.

Self-advocates can help people to have fun while making good friends.

Down Write Brilliant

Self Advocacy means "Speaking up and Speaking out your Rights”.

Many people with Down Syndrome who are speaking for themselves they are called “ Self Advocates”.

People with Down syndrome that have a BRAIN, ARMS and LEGS they can do all sort of things such as 1. They can be more independent 2. Their right to speak up for their rights 3. To have more confidence in themselves 4. When they are upset they can trust on other people like the police, their own parents, or a caregiver 5. They can do wonderful things to impress us such as: learn a new language, play an instrument, be able to read and write, learn how to drive, be creative using their hands, or maybe like me, photography.

During the workshop I’ve also learned other rights from other people and their own responsibilities.

I had the change to practice on presentation skills like the New Zealand Disability Strategy.

I would love to learn about exploring leadership and learn about meetings.

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Update Report From The Disability Consumer Consortium I attended the Disability Consumer Consortium at the Brentwood Hotel, Wellington, for a three day conference from 1 – 3 November. I got to meet other people from all over New Zealand and some of them had disabilities such as cerebral palsy, blind or low vision, hearing impairment, and autism.

We had some guest speakers who talked to us about how the Disability Consumer Consortium works and what it will do in the future.

Issues we discussed at the meeting were: •

• •

•

•

• •

•

• • •

t h e p rov i s i o n o f a f f o rd a b l e p h o to identification so people with disabilities can prove who they are; the development of a flexible respite budget to better meet individual needs; having experienced doctors and nurses who are skilled at helping people with disabilities when they are being treated in hospital; raising awareness about the need to keep medical information of patients with disabilities private to maintain confidentiality; the process of giving feedback to survey people with disabilities so that they can read it in an Easy Read format with both simple words and visuals; to improve the quality of life for people with disabilities living in society; children being abused and ill-treated at home by anyone in their family for not understanding their surroundings and behaviour; helping to make decisions for families to teach their children who have disabilities with learning to read, having a social life, developing their own personalities, and to have a Supported Living Benefit; having an annual bowel screening; for women every two years to have a breast screening to get checked for breast cancer; an agreement has been made to plan a strategy that will be completed in ten years by the New Zealand Disability Strategy;

•

•

•

•

•

pay equity for individualised funding is going to be contracted by the Ministry of Health and will be incorporated into the contract price; t h e G ove r n m e n t h a s a n n o u n ce d a significant funding increase for cochlear implants for last year and for 2018 which 100 people will receive; it was agreed that three days is long enough for the length of attendance at the disability support services meetings; tangata whaikaha and whānau is still a very important priority for the Ministry of Health.

They need to learn to speak English as a second language before going to school; it was very important to have choices, control and flexibility in life, and to have an opinion which is listened to.

I am hoping that many people, organisations and viewers will enjoy reading this report. I greatly enjoyed my time at the DCC meeting.

Reported by Andrew Oswin STRIVE Representative New Zealand Down Syndrome Association

Update Report From The Disability Consumer Consortium

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National Summer Games Huge Success

CHAT 21 | Issue 74, Autumn 2018

Special Olympics Chief Executive Kathy Gibson looks back at the Summer National Games.

We were incredibly proud to bring our 9th National Summer Games to our capital city for the very first time.

This event saw 1771 registered athletes and coaches from 43 clubs and 3 schools, 750 family and supporters and 500 volunteers come together over 6 days to take part in New Zealand's largest event for people with special capabilities. This event was 32 per cent larger than the 8th National Summer Games held in Dunedin four years ago.

We placed particular emphasis on making sure that there were no quotas in any of the 11 sports offered across our 10 venues. This meant that every athlete who qualified to attend the National Summer Games in their chosen sport was able to do so. This epitomises what Special Olympics is all about. Our youngest athlete, competing in swimming, was aged 9 and our oldest two athletes, competing in Ten Pin Bowling and lndoor Bowls, were 72!

It is part of our ethos to ensure that our athletes can compete in the best possible sports environments.

The size and scale of this NationaI Summer Games meant that we needed to use a range of high quality

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venues in Wellington, the Hutt Valley and Porirua.

Additionally, our Equestrian competition was held at Manfeild Park in Feilding.

We are incredibly gratefuI to our amazing team of 50+ volunteer clinicians who enabled the successfuI running of our healthy athletes programme for people with intellectual disabilities, which ran alongside our sports events. Free health screenings in Opening Eyes, Healthy Hearing, Fit Feet and SpeciaI Smiles, were offered to over 2,600 athletes and many were given Free prescription glasses and new hearing aids, all generously sponsored through the wonderfuI efforts of our dedicated clinicaI team.

Additionally, we were able to pilot a referral system for those athletes who presented with acute health requirements so that they were able to receive the specialist care they needed to improve their health and well-being. SpeciaI Olympics offers much more than just sport!

National Summer Games Huge Success

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I cannot thank our corporate and community volunteers enough for the outstanding effort they gave to support our event. Of speciaI mention were the 80+ volunteers and family supporters from Datacom's Wellington offices who very ably led all the information technology functions for our sports events using our Games Management System.

This included the development of the competition schedules and the timely recording and circulation of all sports results. Coupled with this, Datacom generously offered new ideas and innovation for continuous improvement in the Future.

FMC lnsurance provided 63 staff volunteers to support the successfuI running of our Equestrian events in Feilding. Many of the FMC team had agricultural backgrounds and so they could slot into our environment with very little training. Like Datacom, the professionalism the FMC volunteers brought to our event was outstanding. Nga Tawa School not only willingly provided horses from their Equestrian Academy for our competitions at Manfeild Park but also valuable volunteer support.

Staff from Sport New Zealand, the Todd Corporation, Kiwibank and many Lions and Rotary volunteers also provided tremendous community support across all our sports. We wish to extend a huge thank you to all our volunteers who gave so willingly of their time to ensure the smooth running of our event.

CHAT 21 | Issue 74, Autumn 2018

We set five key goals at the start of this event and I am very pleased that we achieved them all. Namely: • to deliver an outstanding event in full, on time and on budget; • to celebrate the outstanding achievements and sporting successes of our participating athtetes; • To further progress our desire to build positive awareness and understanding across New Zealand of the meaning and purpose of SpeciaI Olympics.

• to change public attitudes through this event and build new community support for people with intellectuaI disabilities, and • to leave a very positive Special Olympics legacy within the greater Wellington region and in Feilding for many years to come.

This was my third National Summer Games and each time I encourage our team to aim for the stars. There is no better environment in my view that demonstrates what true sportsmanship is about. Showcasing and celebrating sporting success is a core aim but what will be more important will be the Fun, Friendship and camaraderie developed through sport, not only during Games Week but over a lifetime.

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National Summer Games Huge Success

25

I wish to extend very special thanks to our extremely dedicated coaches, sports officials and volunteers who worked tirelessly with our athletes at community level to prepare them all so well for this event. Each person in the collective team played an important part behind the scenes in our clubs and schools, from fundraising through to preparation of uniforms, travel and pastoral care. To the families and care givers, a special thank you for your support. Our very grateful thanks to our incredible sponsors, suppliers and supporters who have provided in kind and investment support. We cannot run events of this size and scale without your ongoing commitment.

And finally to my staff and our contracted team who went beyond the call of duty to deliver our best NationaI Summer Games on record.

I am buoyed by the exceptional warmth and hospitality that the host communities have shown to us every step of the way.

When we chose Wellington for our 9th National Summer Games, I knew this region would do us proud and there is absolutely no doubt that it delivered in spades to make this such a memorable experience for everyone involved.

Thank you!

Kathy Gibson CEO - SPECIAL OLYMPICS NEW ZEALAND

CHAT 21 | Issue 74, Autumn 2018

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Manuwatu Athletes Pick Up Sports Awards Jack Lewer and Rachel Oemcke were last month rewarded for their outstanding performances at the World Winter Games at the ManawatĹŤ Sport Awards.

Jack was named Disabled Sportsman of the Year and Rachel was named the Disabled Sportswoman of the Year in the intellectually disabled section.

Both of them competed at the World Winter Games in Austria in 2017 where Rachel claimed gold in the skiing Super G on the opening day. The New Zealand team brought home 18 medals in total.

Day one: Rebecca Heath, Skiing Int. Super G (Div. 6) 1:59.01 Bronze; Rachel Oemcke Skiing Int. Super G (Div. 7) 2:28.32 Gold; Chris Westcott Skiing Int. Super G (Div. M4) 1:04.46 4th; Ben Blanche Skiing Int. Super G (Div. M5) 1:18.40 6th; Nathan Symister Skiing Int. Super G (Div. M11) 1:47.05 4th; Cameron Jarvis Skiing Int. Super G (Div. M12) 2:03.09 Gold; Thomas Loftus Skiing Adv. Super G (Div. M2) 1:11.43 6th.

Day two: Jarrod Gilbert Snowboarding Advanced Super G (Div. M2) 1:15.14 Gold; Kaa Dekker Snowboarding Advanced Super G (Div. M3) 1:11.01 Bronze; Martin Joyce Snowboarding Advanced Super G (Div. M1) 2:39.89 5th.

Day Three: Rebecca Heath Skiing Int. Giant Slalom (Div. F11) 3:55.46 Silver; Rachel Oemcke Skiing Int. Giant Slalom (Div. F12) 7:37.92 Participation; Chris

2017 World Winter Games

Westcott Skiing Int. Giant Slalom (Div. M7) 2:16.33 Gold; Ben Blanche Skiing Int. Giant Slalom (Div. M7) 2:35.14 7th; Nathan Symister Skiing Int. Giant Slalom (Div. M13) 3:05.84 Silver; Michael Holdsworth Skiing Int. Giant Slalom (Div. M13) 3:25.99 Bronze; Cameron Jarvis Skiing Int. Giant Slalom (Div. M16) 4:58.81 Bronze; Ella Sharples Skiing Adv. Giant Slalom (Div. F5) 1:45.98 Bronze; Thomas Loftus Skiing Adv. Giant Slalom (Div. M3) 1:47.23 Silver; Jason Donovan Skiing Adv. Giant Slalom (Div. M9) 1:40.80 Silver; Kaa Dekker Snowboarding Adv. Giant Slalom (Div. M2) 2:15.77 Silver; Jarrod Gilbert Snowboarding Adv. Giant Slalom (Div. M3) 2:40.59 Bronze; Martin Joyce Snowboarding Adv. Giant Slalom (Div. M5) 4:59.29 Gold; Day Five: Ella Sharples Skiing Adv. Slalom (Div. F4) 1:51.65 Gold; Michael Holdsworth Skiing Int. Slalom (Div. M9) 1:55.71 Bronze; Jason Donovan Skiing Adv. Slalom (Div. M6) 1:46.81 5th.

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Duncan Armstrong claims Best Performance Award at Auckland Fringe Festival Duncan Armstrong is back home after taking Auckland Fringe Festival by storm.

The success was a while in the making but Duncan managed to take his performing arts career to the next level by a collaboration with Nic and Rose from Everybody Cool Lives Here.

Last September, director Isobel MacKinnon and Duncan started devising what became ‘Force Field’.

Using Duncan’s personal experience and ideas borrowed from Shakespeare’s The Tempest, the pair took two weeks to create a story line for a 25 minute show and a character named Chris.

“Chris imagines someone there and then they find romance,” says Duncan. “To Chris, Fiona is a real character… she’s out there somewhere”.

In November the team expanded by recruiting a few designers and by mid-January the team was working full-time on the show.

CHAT 21 | Issue 74, Autumn 2018

“It’s fun and a lot of work, sometimes I get tired from it,” tells Duncan.

“Sometimes we have to take a break and then come back to it. Then you are refreshed and recharged.”

Before heading up to Auckland, the team tested the work with a few invited guests, including Duncan’s mum, Max. Character parallels with real life included wanting to move out of home, a story line that may not be best delivered to an unexpected mum on the opening night.

The Basement Theatre season ran for five nights and the team managed to stay with friends, giving Duncan a taste of living with flatmates.

After a week of catching up with sleep, the Auckland Fringe Awards were announced and Force Field took home four awards, including Best Director, Best Production Design, and Best Performance (Theatre) for Duncan.

Everybody Cool Lives Here followed up the awards by attending the annual Performing Arts Market where Duncan pitched his solo alongside Jacob Dombroski.

Fingers crossed it means a step forward to touring the works to regional theatres and festivals. A Wellington return season is definitely on the cards for "Force Field", and Duncan is currently looking at what it might take to get the work to Edinburgh Fringe.

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Duncan Armstrong claims Best Performance Award at Auckland Fringe Festival

29

Car Karaoke Video Creates Global Youtube Sensation

A group of 50 English mothers and their children with Down syndrome have created an internet sensation with a moving ‘Carpool Karaoke’ style video.

To mark World Down Syndrome Day, the 50 mothers and their children are seen lip syncing and performing Makaton to the tune of Christina Perri’s ‘A Thousand Years.’

Makaton, a language programme which uses signs and symbols alongside speech, is designed to help hearing people with learning or communication difficulties.

TV presenter James Corden - well-known for his Carpool Karaoke with celebrities said via Twitter the video had moved him to tears.

The mothers in the video are all part of a Facebook group called Designer Genes, which is for parents of children with Down syndrome born in 2013/2014.

They decided to come together “to show the world just how ordinary and fun life with the condition is and how they ‘Wouldn’t Change a Thing’.”

According to 35-year-old Rebecca Carless, one of the mothers in the project, the idea was inspired by videos created by Singing Hands, an organisation which helps people learn Makaton.

It was edited together by one of the fathers, Jamie McCallum.

In the first week alone the video now has been viewed over 500,000 views on YouTube.

Through social media the video was shared around the world.

Christina Perri quickly showed her support for the project, writing on Twitter that she is “so honoured” to have had her song chosen.

“This is the best,” Perri wrote. “My heart is full.”

“The video turned out even better than we had hoped and the response has just been mad,” said Carless, who appears with her four-year-old son Archie.

“Archie loves it, he spots himself straight away and grabs my hand to do the swaying bit.”

The reactions around the world have been overwhelmingly positive.

“Tears running down my face as I write this,” commented one person on social media. “So beautiful. I am a parent a of teenager with DS and remember the days of using Makaton so well.

“It is hugely inspirational and such a fantastic film. Well done to the creators and the mummies and children who took part. I hope it takes the world by storm.”

“We definitely wanted everyone to see it,” Carless told the the BBC. “The idea is, we are just normal mums, we love our kids, they love us, and they are just like other fouryear-olds, we wouldn’t change them.”

CHAT 21 | Issue 74, Autumn 2018

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IHC Book Reviews

Here is just a sample of new resources at the IHC Library.

If you would like to recommend any books, DVDs or games for the library we would love to hear from you.

Born This Way, Season 1

Born this way is an American TV series that offers an intimate look into the lives of seven young men and women born with Down syndrome, along with their families and friends.

Cameras follow the young men and women as they pursue their passions and lifelong dreams, explore friendships, romantic relationships, and work, all while defying society’s expectations.

Review on Amazon: I am a Mother with a 23 year old son who has Down syndrome‌ I decided to watch it with my son to see what he thinks. He watched it with a close friend. I observed to remain a bit objective about his response.

Our son was fixated to the screen. I think he could not believe that someone like himself would be allowed in this world to say anything about themselves. He was totally smitten by these people and their lives and relations.

Katlyn Conquers The World

by Ann and Katlyn Aubitz "Katlyn Conquers the World is a resource for parents of children with Down syndrome. Join us in Katlyn's adventure! Katlyn's Mom, Ann Aubitz, tells her family's story to other parents who have a child with Down syndrome and may be struggling or want another perspective. The best information has always come from other parents when they share their stories and resources that Ann now shares in [this book]." - JACKET COVER

IHC Book Reviews

Review from GoodReads: Funny, charming, selfeffacing . . . and extremely helpful! This book, written by mother-daughter team, Ann and Katlyn Aubitz, is terrific. It is packed with practical tips, links to resources, and real life stories that will benefit educators, parents of Down syndrome kids, and anyone else who wants to gain an understanding about the challenges and rewards of raising a special needs child. Ann is that smart, gentle friend we all seek advice from and Katlyn is that exuberant, confident kid that keeps us smiling. Really well done - highly recommended!

Personal Space Camp

by Julia Cook Louis, a self-taught space expert is delighted to learn that his teacher has sent him to the principal's office to attend personal space camp. Eager to learn more about lunar landings, space suits, and other cosmic concepts, Louis soon discovers that he has much to learn about personal s p a ce r i g h t h e re on earth. Written with style, wit, and r hy t h m , Pe r s o n a l Space Camp addresses the complex issue of respect for another person's physical boundaries. Told from Louis' perspective, this story is a must-have resource for parents, teachers, and counsellors who want to communicate the idea of personal space in a manner that connects with kids.

This lovely picture book got 5 out of 5 from a borrower who said it is a great book for over 5s.

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NZDSA Notices Notice of the New Zealand Down Syndrome Association’s Annual General Meeting

Rose Award

I would like to encourage you to nominate a deserving individual or organisation in 2018. These awards provide the opportunity to thank individuals or organisations who either support individuals with Down syndrome or the Down syndrome community.

Please email me neo@nzdsa.org.nz your nominations for an individual, family, or organisation explaining what they have done to “promote the participation of people with Down syndrome in their community”.

I will acknowledge the person in CHAT21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.

Top 10 Maths Applications

The NZDSA would like to know your favourite apps for maths. Please email your list to Jess at nzdsainfo@xtra.co.nz

Date:

Friday the 27th October 2018

Time: 5.00pm Venue: Welcome Room at SkyCity Hotel, Auckland.

Level 1, next to the hotel reception RSVP: By 24th August 2018

nzdsai@xtra.co.nz or

Linda te Kaat 0800 693 724 press 2

Thanks

Thanks to the following funders and sponsors who have made donations to the NZDSA this quarter: • • • • • • • • • • • • • •

COGS Manawatū/Horowhenua COGS Manukau COGS Whangarei COGS Central Otago COGS Hamilton The Holdsworth Charitable Trust NZ Lottery Grants Board Pub Charity COGS Cantebury Southern Stars Eastern & Central Trust Joyce Fisher Trust Rata Foundation Thomas George McCarthy Trust

The NZDSA has a Facebook page that serves as a community forum and notice board for relevant issues, events and stories.

Please check it out at facebook.com/NZDSA

CHAT 21 | Issue 74, Autumn 2018

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NZDSA Resources Cost for members

NZDSA Resources

(Including Postage)

Cost for nonmembers (Including Postage)

Creating A Positive Hospital Experience This resource is beneficial to people with Down syndrome or any intellectual / developmental disability of any age who need to go to hospital for an appointment or procedure.

$10.00

$20.00

We Welcome Your Baby pack This resource provides new parents with support and information. The pack contains: three booklets, 4 leaflets and a DVD.

Free to new parents*

$20.00

Living with Down Syndrome book This book provides information on Down syndrome.

$5.00

$5.00

Recipe book Contains numerous gluten-free recipes.

$5.00

$5.00

Transition To School This DVD provides an overview of parents’ and educators’ perspectives on the transition process. This DVD provides parents with information and advice on how to best make the transition to school.

Contains a DVD and supporting literature.

NZDSA members who have a child aged 3 – 6 are entitled to one free copy of the resource*

$20.00

Plan For the Future This resource provides individuals with Down syndrome and their families with information on how to take positive steps from school into adult life.

Contains a DVD and supporting literature.

NZDSA members who have a child aged 14 – 30 are entitled to one free copy of the resource*

$20.00

Turn the Page with Me This resource demonstrates how parents can share books with their children with Down syndrome to support both their child’s spoken language development as well as developing their literacy skills. It models effective strategies, explains why they work and provides suggestions for choosing appropriate books.

NZDSA members who have a child six years of age or younger are entitled to one free copy of the resource*

$20.00

Learn Through Play and Daily Routines Helping parents and caregivers to support their child’s development through play and routines at home and in their community.

NZDSA members who have a child six years of age or younger are entitled to one free copy of the resource*

$20.00

Dress 2 Impress Learn what to wear and how to wear it. Showing you how to select the right clothes for the right purposes. Contains a DVD and a resource booklet.

Free

$20.00

*Resources available to members outside of age ranges: $10.00 To order one of these resources, please send your order and payment to Linda te Kaat, National Administrator, NZDSA, P O Box 4142, Auckland.

All enquiries phone 0800 693 724 press 2 or email nzdsai@xtra.co.nz.

NZDSA Resources

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Contact Directory Angela Hawke Zone 1 Representative Northland/Auckland

NZDSA Committee

027 246 0160 angieujdur@xtra.co.nz

Kim Porthouse Treasurer Zone 4 Representative Wellington & Wairarapa 021 297 0298

Zone 1 Representative Northland/Auckland 09 410 0159 022 034 6475 diandbrad@gmail.com

Shelley Waters President Zone 5 Representative Ashburton & all areas above 03 342 4554 021 046 0482

Gwen Matchitt

Geraldine Whatnell

Vice President

Zone 3 Representative

Zone 2 Representative

Whanganui, Manawatū, Gisborne

Waikato, BOP & Taranaki

& Hawkes Bay

07 870 4580

06 356 3229

027 244 4543

027 356 3229

hakimal@xtra.co.nz

geraldinewhatnell@gmail.com

Averill Glew Zone 6 Representative All areas below Ashburton 03 216 9996 027 627 3069 averillglew@rurued.school.nz

Jess Waters

NZDSA Staff

waterssh@hotmail.com

PO Box 4142, Shortland Street Auckland, 1140 0800 693 724

Zandra Vaccarino

Linda te Kaat

National Executive Officer

National Administrator

0800 693 724 ext. 1

0800 693 724 ext. 2

neo@nzdsa.org.nz

nzdsai@xtra.co.nz

Regional Liaison Officers

kimlporthouse@gmail.com

Diane Burnett

New Zealand Down Syndrome Association

Christel van Baalen

Donna Higgs-Herrick

Sandra Slattery

Auckland Community

Canterbury Community

Taranaki Community

Liaison Officer

Liaison Officer

Liaison Officer

09 527 0060

021 208 8203

027 604 5786

clo@adsa.org.nz

cdsainc@gmail.com

taranakidownsyndrome@gmail.com

NZDSA Membership

Membership charges are as follows: $30 one year Financial membership fee, $50 two year Financial membership fee, $50 one year Affiliate membership fee, $15 one year Self-advocacy membership fee. To obtain full details and a membership form please either email – nzdsai@xtra.co.nz or telephone 0800 693 724 ext 2.

Database Updates

The NZDSA would like to update their database. If your details need updating please contact us either by email – nzdsai@xtra.co.nz or telephone 0800 693 724 ext 2.

CHAT 21 | Issue 74, Autumn 2018

Social Media and Information Officer 021 032 8539 nzdsainfo@xtra.co.nz

Daniel te Kaat Graphic Designer 021 22 333 93 daniel@slaughterhaus.co.nz

Donations

The NZDSA receives no Government funding and relies solely on donations and grant applications to keep us running. If you are able to make a donation please either send a cheque to us at P O Box 4142, Shortland St, Auckland, 1140 or direct credit to ASB 123073 0090784 00 using your surname as reference. If you require a receipt please email us to let us know you have made a donation via internet banking by telephoning 0800 693 724 extension 2 or emailing nzdsai@xtra.co.nz. If sending us a cheque please include your address so a receipt can be posted to you.

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Our Faces Our People

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0800 693 724 nzdsa.org.nz