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

Issue 74 Winter 2018

Celebrating Heroes Of The Down Syndrome Community

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

Our faces, our people. National Achievement Awards 2018.

Contents

From the Editor

National Executive Officer

President's pen

Governor-General honours Down syndrome heroes

Down syndrome community gets involved in Education Summit

Keratoconus â€“ A potentially blinding eye disease may be surprisingly common in Down syndrome

Young businessman gives back to charities who have helped him

New Zealand Warriors embrace Mark Dekker

Guardianship: Making decisions in adulthood

Invercagill woman developing photography business

STRIVE members introduce themselves

We are pleased to present you with the Winter edition of CHAT 21. This edition will focus on the recent Volunteer Achievement Awards where several members of our community were recognised for their work for people with Down syndrome, either by supporting them or by people with Down syndrome living full independent lives. By showing what they can achieve without fear and with the right support they are not only role models for other young people with Down syndrome but also for the rest of society to show the community what is possible and never to underestimate their potential. We will also look at the two Education Summits in which our representatives were involved to start planning towards a better and more inclusive education system. I also want to draw your attention to the story by Nan Jensen and her views on families opting for Welfare Guardianship or not. We hope to have offered you a wide variety of reading and want to encourage you to let us know if you have a story to tell or to share with our readers. Kind regards Coen Lammers

STRIVE member joins Disability Consumer Consortium

IHC book reviews

NZDSA notices

NZDSA resources

Contact directory

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

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.

Linda te Kaat and Tania Grose at the Volunteer Awards

National Executive Officer “Volunteers, The Heart of our Community By many, the work will be completed, Ma tini, ma mano, ka rapa te whai”. Theme for 2018 National Volunteer Week

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Kia Ora This year the National Volunteer Week was celebrated from 17 June to 23 June. The theme selected for 2018 truly captures the volunteering spirit of our volunteers - past and present - who are the heart of their communities and who are an essential link to providing varied support, activities, and resources to our members who benefit from their generosity. I would like to acknowledge and thank all the volunteers – regionally and nationally - who: • inform and support parents and whānau • empower people with Down syndrome • connect members to each other and the wider community • enable the mission of the NZDSA to be achieved • advocate for social change • fundraise • initiate projects • serve or represent on committees or working groups • host social events, and • share their skills, their talents and their time.

Maree Kirk, Abigail Knight, Prime Minister Jacinda Ardern and

The Carers Alliance Meeting at Parliament.

Zandra Vaccarino at the Education Summit in Auckland.

I’m sure that you will join me in thanking all our volunteers for their on-going dedication and commitment. It would be impossible for the regional Down syndrome groups and the NZDSA to provide the varied information and support services without our wonderful volunteers who serve the NZDSA community. Thank you! Your tremendous support ensures the growth and development of the Down syndrome community in New Zealand.

National Achievement Awards

This year the NZDSA celebrated National Volunteer Week slightly earlier, on Thursday the 14th June at Government House, Wellington. This heart-warming celebration hosted by the NZDSA’s Patron, Her Excellency The Rt Hon Dame Patsy Reddy, GovernorGeneral of New Zealand, and His Excellency Sir David Gascoigne provided a fitting opportunity to acknowledge our wonderful volunteers and achievement award recipients. This celebratory High Tea reception included the presentation of the Val Sturgess Memorial Award to recognise the contributions of volunteers. This year Linda te Kaat and Tania Grose shared the award. Thank you Linda and Tania for your valuable contributions to the Down syndrome community! This celebratory reception also included the presentation of three NZDSA National Achievement Awards. Lily, Josh and Caroline are inspiring role models. The event was also an opportunity to award our third life membership to Paul Gibson. I’m sure you will enjoy reading more about these awards in this edition of CHAT 21.

National Executive Officer

NZDSA’s Annual Appeal - June to July 2018

The NZDSA is very grateful that Southern Stars, a Charitable Trust, is once again running the 2018 annual fundraising telephone campaign on behalf of the NZDSA. The NZDSA’s annual telephone fundraising campaign has been active from the 18th June to the 31st July 2018. The focus of the appeal has been two-fold: 1. to host a Youth Development Camp at Vaughan Park Retreat Centre, Long Bay Auckland. This camp will be for youth who have higher support needs so parents/key carers will also attend. The camp is from the 2nd to the 4th November 2018, and 2. the annual cost of distributing CHAT 21. The funding received through the generous donations of the public enables the NZDSA to host camps and workshops for people with Down syndrome. In addition, the past appeals have enabled the NZDSA to produce numerous resources like the Plan for the Future DVD, Turn the Page DVD, Transition from School Resource, Creating a Positive Hospital Experience Resource, Play and Daily Routines DVD and the more recent Dear Community and Dear Health Professionals digital stories.

Thank you Southern Stars for your on-going support.

Regional DSA group and NZDSA meeting in Wellington.

Systemic Advocacy

This quarter, advocacy has featured prominently in the NZDSA working calendar. The various pieces of work have included: • attending the Education Summit which you can read about in this edition of Chat 21 • collaborating with Education for All to create the key messages for systemic advocacy. We are hoping to meet with Minister Tracey Martin in the next couple of months • attending and advocating at the Ministry of Education meetings • representing the NZDSA at the Carers Alliance Meeting. This meeting included meeting with Minister Carmel Sepuloni to discuss the new five-year Action Plan for the Carers' Strategy. She has told her officials that she wants an ambitious Action Plan • advocating at the National Screening Unit meeting, and • representing the voices of family and whānau at the MidCentral Transformation meetings.

NZDSA team and Regional DSA Group Meeting

The NZDSA hosted a meeting for all our regional groups in Wellington on Saturday the 23rd June 2018. It was a wonderful opportunity to work together, to strengthen our networks, to share our vision for the future and to include some professional development training. It was also an opportunity to recognise the regional volunteers and staff members who provide a valuable information and support service in their community.

Please, please, please forward your email

CHAT 21 | Issue 74, Winter 2018

Zandra hands out a Rose Award to Rose Boddy

address to the NZDSA national office

It would be a tremendous help if you could forward us your email address as it would assist us to provide a more prompt way of communicating with you. 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 promptly forward information to you. Increasing our email database will enable us to distribute information to you quickly. If we don’t have your email address, please would you forward it to Jess at hello@nzdsa.org.nz

Rose Award

Last quarter I nominated Rose Boddy from Easie Living Centre for a Rose Award for hosting the NZDSA World Down Syndrome Day celebrations. I want to share a photograph of us at the National Achievement Awards (see above). Do you know anyone who deserves a Rose Award? The Rose Award provides the opportunity to thank individuals or organisations who either support individuals with Down syndrome or the Down syndrome community, so take a moment to think about someone you could nominate. 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 CHAT 21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates. In closing I would just like to remind you about the NZDSA 2018 AGM - you can read more about it on the notices page. Keep warm and enjoy reading this edition of CHAT 21. Hei konei rā Zandra

President's pen Hi Everyone Hope you are managing to stay warm with the winter months now upon us. I have to say it’s not my favourite time of the year with the shorter nights and cooler days and no more long weekends between Queen’s Birthday and Labour Weekend!! In June, the NZDSA held its National Achievement Awards. Due to time constraints and unavailability of Government House, we did not hold the Awards last year, so it was very exciting to once again acknowledge the amazing achievements of three of our members – Lily Harper, Caroline Quick and Josh Cooke, as well as acknowledging two outstanding volunteers who received the Val Sturgess Memorial Volunteer Award – Linda te Kaat and Tania Grose, and also awarding a Life Membership to Paul Gibson, who, in his previous role as the Human Rights Commissioner with responsibility for Disability Issues, has been a huge supporter of the NZDSA and a great advocate for people with Down syndrome, and still is. What a lovely day was had by all. We were very privileged to be hosted by Their Excellencies Dame Patsy Reddy and Sir David Gascoigne in the beautiful ballroom at Government House, Wellington. Once the Awards were presented, we were then served a high tea, which was a lovely way to commemorate our worthy recipients and all their family and friends who were able to attend. A huge thank you to everyone involved in making this such a special day for all our recipients and their families. When hearing the citations of our National Achievement Award recipients, I was so proud to be part of such an amazing Community and proud that these achievements could be recognised by the NZDSA in such a wonderful way. Lily, Caroline and Josh are such great role models and an inspiration to us all. Linda and Tania, our Volunteer Award recipients, started a ball in Christchurch for people with disabilities 13 years ago and have devoted their time and energy without any payment to ensure this night is one of the highlights of the year for those who attend. How fitting that they received their Awards the week leading into National Volunteer Week.

President's pen

Speaking of volunteers, I would like to acknowledge all the volunteers who support the NZDSA in one way or another. This year’s theme was “Volunteers – the Heart of the Community” and this is certainly so true. You all play such an important role in this organisation and we really do appreciate your continued support. I would also like to acknowledge our National Committee, who are all volunteers. It takes a lot of organising to attend Committee meetings over a weekend, quite often having to take annual leave from day jobs as the meetings quite often start on a Friday, so a big thank you to you all and to your families in supporting you to attend these meetings. I must also acknowledge the volunteer hours put in by our paid staff. Funding only allows for so many hours to be worked and both Zandra and Linda, in particular, often work voluntarily to ensure families are well supported. What a lucky organisation we are to have such amazing Volunteers. Well, I hope you can take some time out of your busy lives to sit back and relax and enjoy this edition of CHAT 21. The cold days of winter are a great excuse for having a nice warm cuppa and putting your feet up to read CHAT 21 and forget, for a short time, what’s happening outside. If after reading some of the stories in this edition, you feel inspired to contribute to our next edition, please do so – we would love to hear from you.

Take care Shelley

Governor-General honours heroes in Down syndrome community Several members of the New Zealand Down Syndrome community were honoured on June 14 during the Volunteer and Achievement Awards by Governor - General Dame Patsy Reddy at Government House in Wellington, on behalf of the New Zealand Government. Linda te Kaat and Tania Grose from Christchurch received the Val Surgess Memorial Volunteer award for their work organising the annual Unforgetaball for people with Down syndrome in Christchurch. Lilly Harper, Caroline Quick and Josh Cooke all received an Achievement Award for their incredible achievements in their community, living a busy, active and interesting lifestyle in their own community to set a great example to show that Down syndrome is no barrier for having a full life like every other person around them. The Awards ceremony also recognised Paul Gibson for his work with people with Down syndrome by awarding him a Life Membership of the NZDSA. The nominations below tell a bit more about the achievements of these wonderful recipients.

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Linda te Kaat and Tania Grose Val Sturgess Memorial Volunteer Award

This year the Val Sturgess Memorial Volunteer Award will be shared by the dynamic duo Linda te Kaat and Tania Grose who decided 13 years ago during ball season that it would be a great idea to organise a ball for people with disabilities so that they could look forward to attending a social event. Their intention was to host the ball and then gauge after the first ball if it was an event that their community wanted. The ball was a huge success and everyone wanted to know when they would host the next ball. S i n ce 2 0 0 6 , t h e s e d e d i c ate d wo m e n h ave volunteered their skills and time to organise this event and The Unforgetaball has become a highlight in the Christchurch social calendar. Despite challenges, they have hosted a yearly event except for one year which had to be missed due to the Canterbury earthquakes. Undeterred, Linda and Tania forged on and in 2017 the Unforgetaball celebrated its 10-year anniversary. We asked Linda and Tania to share a little about their journey and they said they wanted to host a stylish, formal event that included families and friends of people with disabilities. They set about looking for a venue having no idea how successful it would be, hoping they would get 100 people along – but they got 200. They have continued to have 200 people attend every ball, the only difference is that the waiting list for tickets gets longer each year and now people from around the country travel to attend this event. Tania and Linda would say that they have worked with amazing people who have made this event possible but it is their vision and enthusiasm that

drives these events and ensures a wonderful evening for everyone who attends. It is a tribute to Linda and Tania that the people they initially approached to help with music, the fabulous DJ Chris Martin from Co-Motion and Bison Creative for the art and design work, are still involved with this event. Their wonderful decorator Christine from Acropolis Wedding Hire who was involved with the first ball remained involved until 2016 when she sold the business. Their vision to create the Unforgetaball has inspired other groups around the country to host a ball for young people with Down syndrome. However, we haven’t seen any groups host annual events. This is probably because of the months of planning it takes to organise the event. Usually, Linda and Tania start planning in February and it all starts with deciding on the theme and décor because yes - each year it is different! We would also like to acknowledge Linda and Tania’s families and friends as they also get involved in the huge task of assisting to set up and take down everything at the ball. Linda and Tania say that they get enormous pleasure seeing everyone enjoying the night and I am sure that everyone who has ever attended a ball would join us in acknowledging that Linda and Tania are volunteers that truly demonstrate the theme for National Volunteer Week “Volunteers – Heart of our Community”. Linda and Tania, you are the heart of the Unforgetable ball and are well deserving recipients of the Val Sturgess Memorial Volunteer Award.

Governor-General honours Down syndrome heroes

Lily Harper Aged 29 , from Palmerston North Nominated by her siblings

Lily is an energetic, sociable and independent woman who grabs life with both hands. She lives with two friends with Down syndrome who own their own home. Lily has managed the transition from being at home to living independently very well. She works at Farmers three mornings a week, which she has done for many years, and is a beloved part of the team there. Outside of work, she enjoys spending time with her friends, whether at Creative Journeys where she participates in various activities, performing with the Jorjaz dance group, or training hard at swimming for the Special Olympics. Lily is a gifted communicator and has real empathy for others, wanting to make sure that everyone is included and happy. Lily enjoys travelling and has started a local trend in Palmerston North, which is to celebrate your 21st in the United States or another country. She has a passion for movies and television which has inspired her own pursuits in acting and dancing, and she enjoys performing in front of huge crowds

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and has performed at many events throughout the community. Lily has also written and directed many annual nativity plays casting her family in a range of roles and finding creative ways of directing the play which includes introducing a new theme each year. Lily, is also an advocate for people with Down syndrome and has shared her thoughts in printed media and has featured on many digital stories that the NZDSA has produced. Lily has even starred in her very own episode of Attitude TV, The Lily Harper Show, where she was the host of her own talk show, inspired by her hero Ellen DeGeneres. Lily also co-presented with Simon Dallow at the Attitude Awards. Lily is sure to bring a smile to the face of anyone who watches her perform, and it is very inspiring to see Lily living a happy and fulfilled life, surrounded by people she enjoys spending time with.

Josh Cooke Aged 23, from Hikurangi Nominated by Sharon Cooke

Josh enjoys a range of activities but powerlifting and art are his two favourites. He has been involved in powerlifting for around eight years and art for the last seven years. He competes in both mainstream and Special Olympics powerlifting and has achieved well in both in 2017. The New Zealand bench press competition was a mainstream event. At this event he achieved first place in the under-74kg junior men’s division. He represents Northland in mainstream competitions and surprisingly represents Otago in Special Olympics. Northland’s Special Olympics does not offer powerlifting, so Josh joins his old Otago team for these events. Josh is also an entrepreneur. He wanted to attend the Special Olympics Summer Games, so he started a fundraiser and sold kumara, pumpkins, asparagus and eggs to meet the cost of the Games, accommodation and airfares. At the Special Olympics Summer Games in November, 2017 in Wellington he took first overall under-74kg

division with gold in squat, dead lift, combination and silver in bench press. Art has been another passion of Josh’s for many years. He currently enjoys his weekly art lesson at the Quarry Arts Centre in Whangarei. He has a particular fondness for painting sunsets and landscapes. The Quarry holds an exhibition once a year for those attending the art class. It is a highlight of the year for those involved in the art classes as it offers the artists the opportunity to showcase their painting and everyone hopes to see a few of their art pieces sold. At the 2017 exhibition Josh sold seven of his paintings. Josh is also a cadet at the local fire brigade. He is involved in many other activities like swimming, horse riding weekly, a church café team once a month and he loves cooking and food. Josh’s long-term goal is to have his own café which will incorporate his own art gallery and as a true entrepreneur his art will not just be for enjoyment but also for sale.

Governor-General honours Down syndrome heroes

Caroline Quick Aged 29, from Christchurch Nominated by Shelley Waters

Caroline is a lovely young lady, she is a skilled communicator and she is committed to being a great advocate for people with disabilities. Caroline was born in England where she attended a mainstream primary school. Caroline was the first student with Down syndrome the school had taught and she probably taught them a thing or two also. Whilst she was at a mainstream secondary school, Caroline did a childcare course and received the Best Improved Student award for this course, which she was very proud to accept at an awards evening, even though she had scarlet fever. Caroline’s family immigrated to NZ when Caroline was 16 and she attended Allenvale High School in Christchurch. Caroline left high school at 19 and went to Polytech where she did a work skills course and passed with flying colours. Caroline’s first paid job was at McDonalds, which she really enjoyed and gained valuable skills but unfortunately, due to health issues, Caroline had to resign from McDonalds. Once she was on the mend, she went back to Polytech and completed a Barista Essentials Course – Caroline had to make four coffees in 30 seconds and she did it. She then completed the Supported Learning Hospitality Course which involved Barista training – level 2, hotel accommodation and cooking. She has also completed a sewing course run by the Salvation Army and a retail course run by Academy Training Centre. Caroline has volunteered for St Chads, Christchurch, helping with packing of the food parcels for distribution. Caroline is currently volunteering at a rest home for the elderly with dementia in Christchurch where she helps out in the library and with the activities for the residents and also helps in the Café at the Spreydon Baptist Church. Caroline was chosen as an individual to represent

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people with a disability on the initial steering group of the Enabling Good Lives (EGL) initiative, initiated by Turiana Turia. This was where I first met Caroline, and I was so impressed by the way Caroline conducted herself and the contribution she made to this steering group. Caroline has just been elected as a representative on the Regional Leadership Group of EGL in Christchurch fo r t h e u p co m i n g Syste m Transformation initiative which is due to be piloted in the Mid-Central Region but will hopefully be rolled out nationally in 2020. Caroline has been a great advocate for people with disabilities. As well as being involved with EGL, Caroline has been heavily involved in People First and has served as Mid-South President and MidSouth Secretary. Another leadership role Caroline has been a part of is the NZDSA Self-Advocacy group – STRIVE. Caroline has attended meetings and workshops held around NZ with STRIVE and has also presented at a conference in Australia talking about STRIVE, which Caroline said was an amazing experience. Caroline has also presented with a fellow STRIVE member at the University of Canterbury promoting self-advocacy and has also attended World Down Syndrome Day and other events as a STRIVE representative. For all the events, meetings and volunteer work Caroline attends each week, she buses independently and if a venue is not on a particular bus route, Caroline is very confident at messaging people to sort out a ride. For the future Caroline is looking forward to having paid employment, going flatting with her boyfriend, keeping on advocating for people with disabilities and continuing her involvement with the NZDSA and having a fabulous life, and with the amazing set of skills Caroline has, I have no doubt this will become a reality for Caroline very soon.

Paul Gibson Life Membership

The NZDSA is proud to present our third Life Membership to Paul Gibson to acknowledge his commitment to raise awareness and advocate for people with Down syndrome while he served as the Disability Rights Commissioner and his ongoing support. Paul actively got involved in promoting World Down Syndrome Day by attending and speaking at NZDSA events, celebrating World Down Syndrome Day, writing thought-provoking articles in the media. Paul has also advocated for the rights of people with Down syndrome, showcasing the contributions that people with Down syndrome make to the community and educating the wider community on the value of diversity. Paul has also championed the STRIVE group and would always meet with the group when they had workshops in Wellington so that he could listen to their voices and to ensure that their advocacy message was included in relevant pieces of work. Paul actively worked with STRIVE over a few years so that they could develop key messages on

prenatal screening so that for the first time in history people with Down syndrome can be prepared and empowered to advocate on this critical issue. The STRIVE members have appreciated that Paul has championed them and that he has valued their perspectives. Paul also took active steps to raise awareness of the ethical issues pertaining to Prenatal Screening. He initiated and steered the side session titled "Our convention, our future, don’t be afraid" People with Down syndrome and their families open up a conversation on living in today’s and tomorrow's world at UN Conference of state parties COSP on CRPD in May 2017. Paul, we would like to acknowledge your valuable contributions to assist the NZDSA to achieve its vision that People with Down syndrome are valued and equal members of their community, fulfilling their goals. Paul, we would like to award you with life membership to the NZDSA and welcome you to our whānau.

Governor-General honours Down syndrome heroes

Down syndrome community gets involved in Education Summit

Several members of Education. the New Zealand Down “It was also an opportunity Syndrome Association have for the NZDSA taken part in Education representatives to ensure Summit events that will that the aspirations and help to determine the goals of learners with Down future education in New syndrome and their family Zealand. and whānau were recorded The Summit events were in the discussions.” part of Kōrero Mātauranga, “I think having Andrew a national conversation Oswin and Abigail Knight about education, which represent the voice was launched by the Prime o f p e o p l e w i t h D ow n Minister, the Rt Hon Jacinda syndrome was extremely Ardern, on March 23. valuable and powerful and The goal was to bring it was the first time we have together the wider had self-advocates attend community and the and contribute to National education sector to achieve Education Minister Chris Hipkins and Abigail Knight Education meetings.” shared ownership of a vision Angelique van der Velden for the education system for the future. attended the Christchurch Summit as a parent, This process will set the direction of travel and agree a teacher, as a member of the Canterbury Down shared priorities across the whole system – from Syndrome Committee and the NZDSA Education early learning, schooling and tertiary through to Committee and said that the event felt like we were lifelong learning. part of making history. The NZDSA was invited to nominate three people to “We truly had conversations about where we want attend the Christchurch Summit and three people to education to go and that what we suggested will attend the Auckland Summit. become the framework for change,” said Angelique. “There were over 3000 expressions of interest and The Christchurch event at the Horncastle Arena on many people were disappointed that they couldn’t May 5, attracted 800 people from all walks of life attend,” says Zandra Vaccarino who attended the including educators from around the South Island Auckland Summit on May 12-13. and Wellington. Zandra says that having NZDSA representatives “I hadn’t realised that the last time such an event attend the Education Summit ensured that took place was in 1937,” said Angelique. discussions included greater diversity and that their She said that it was inspirational to brainstorm with contributions would enrich the 30-year vision for such diverse and knowledgeable people. “And it was interesting to see that over time individual agendas

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Andrew Oswin puts down his ideas at the Christchurch Summit.

became collective passions.” Angelique’s personal highlight was a 40-minute discussion with Children’s Commissioner Judge Andrew Becroft about her own family’s journey through education. “It was a true and honest discussion. I passed on our experiences, the good things we do at my own school, Merrin School, to the all-time lows. I drew on experiences from other CDSA families too. He asked very poignant questions.” As a result, Judge Becroft invited Sir Lockwood Smith into the conversation as well. The former National Party Education Minister Sir Lockwood Smith had just been appointed as one of the members of the Education Review advisory board. He has been appointed to the eight-member board to pull together all the ideas submitted by thousands of people in the national education conversation and the Government's reviews of most parts of the education system. Angelique said her discussion with Sir Lockwood focused on the positives and negatives of the existing system, especially in the disability sector. “I think this will be the best spent 20 minutes of my career,” said Angelique who was assisted at the Summit by fellow CDSA board member and Strive Self-Advocate Andrew Oswin. Andrew said that the summit was about teachers, educators, parents and students coming together to rebuild the education system that is inclusive and utilises the resources and technology that is out

there. He said he was there to hear other perspectives, views and values and to represent the NZDSA and share his own experiences. “I got to speak to other people about my experiences as a student with Down syndrome and how it affected me. I even got to talk about Strive.” Andrew hoped his presence made a difference, “because it was helpful for people to hear the views of someone with a disability.” The highlight for Andrew was meeting Education Minister Chris Hipkins. “It was good to hear what he said about everyone having a right to education.” In his opening speech at the Christchurch Summit, Minister Hipkins said he wanted the participants, and the wider national conversation, to define what education should look like over the next 30 years. "Our government's vision for education is very clear," he said. "We want a high quality public education system that provides all New Zealanders with lifelong learning opportunities so that they can discover and develop their full potential, engage fully in society, and lead rewarding and fulfilling lives". "We believe in an education system that brings out the very best in everyone and that means our educational offerings need to be as diverse as the learners we cater for." In his speech, he also announced the other members of the advisory group. Children's Commissioner Judge Andrew Becroft will chair the group.

Down syndrome community gets involved in Education Summit

Sir Lockwood Smith with Canterbury DSA committee members Andrew Oswin and Angelique van der Velden.

The other members are: • Marian Hobbs, a former school principal who became a Labour MP and Environment Minister under Helen Clark. • Professor Welby Ings of AUT University, who wrote a book, Disobedient Teaching, about finding innovative ways to motivate students that were often frowned upon by school principals. • Etta Bollinger, a Wellington poet, playwright and disability advocate. • Professor Rawinia Higgins, deputy vicechancellor Māori at Victoria University. • Dr Debbie Ryan, a Wellington consultant on Pasifika health issues. • Deborah Walker, chief executive of the NZ Centre for Gifted Education. Speaking after the Auckland Summit, Zandra Vaccarino said that there was a real attempt to ensure that the Summit was accessible and that it was exciting to see youth and a more diverse representation of people attend this event. The event had no scheduled programme, but a master of ceremonies, Philippe Coullomb, guided the attendees through the two days. “I think that having collaboration facilitators plan and manage the event created a different platform for engagement which was really dynamic and allowed us to step out of what the current issues are and to work together to create a new vision.”

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The schedule for the two days was different from a usual conference and instead of the typical programme of events, what was offered was a range of “hubs" - each hub exploring a different topic. The six overarching topics were: 1. Ways of Learning 2. Ways of Teaching 3. Lifelong Learning 4. Skills and Abilities 5. Enabling Self-Fulfilling lives, and 6. Creating a Thriving Society. Participants could decide which hub to attend and then answered broad questions in small groups of about eight. Following the discussion, the attendees could attend a range of presentations and then return to their original hub to explore the discussion questions further. Responses were recorded and opportunities were offered to add to the discussion by recording thoughts on whiteboards and discussion cards. Artists were also on hand to turn all the feedback into a visual representation known as “knowledge word” that summarised key themes and ideas that emerged in the discussions. “We also engaged in a process to identify the key values for an education system and my one concern was that equity was not included in the top 10 values identified in the Auckland summit,” said Zandra. To find out more about the summit you can go to https://conversation.education.govt.nz/

Keratoconus â€“ A potentially blinding eye disease may be surprisingly common in Down syndrome By Akilesh Gokul

Keratoconus is a potentially blinding disease of the cornea, the clear dome structure at the front of the eye. The cornea is normally spherical in shape, like a soccer ball, but in keratoconus, the cornea thins and bulges, becoming distorted and forming a cone shape (like a traffic cone). The distorted shape of the cornea in keratoconus results in reduced vision and in severe cases can lead to legal blindness. Keratoconus affects approximately 1/2000 of the general population. Research done overseas estimates that between 1/10 and 1/3 individuals with Down syndrome are affected by keratoconus, making it 10 to 600 times more common than in the general population. Unfortunately, there has not been any research done in New Zealand to determine how common keratoconus is in individuals with Down syndrome. Not knowing how common the condition is likely means that many individuals with keratoconus are not receiving the care they require as their health care providers simply do not know that they should be assessed to determine if they have the disease. It is extremely important to detect keratoconus in its earliest stages as there is a potential treatment option available which can prevent the condition from getting worse. The treatment is known as corneal collagen cross-linking. A team of researchers at the University of Auckland, Department of Ophthalmology are looking to address this shortcoming in our knowledge. The team is headed up by Professors Charles McGhee

and Dipika Patel, world renowned researchers in the field of keratoconus, and is rounded out by Drs Samantha Simkin and Akilesh Gokul, Post-Doctoral clinical researchers, and Miss Joyce Mathan, a PhD candidate. A pilot investigation was carried out at the NZ Special Olympics Summer games 2017 as part of the eye health screening program. The results of the pilot investigation suggest that keratoconus may be detected in up to 38.8% (more than a third) of individuals with Down syndrome in New Zealand, however, further research is required. The team are set to begin a group of large interrelated research investigations in late 2018/early 2019. The aim of these investigations will be to: 1. Determine how common keratoconus is in individuals with Down syndrome in New Zealand 2. Determine what effect it has on these individualsâ€™ vision and overall quality of life 3. Address the way keratoconus is treated in these individuals to perverse the highest possible level of vision. Look out for more information on these studies and how to get involved in upcoming editions of CHAT21.

Keratoconus â€“ A potentially blinding eye disease may be surprisingly common in Down syndrome

Flynn Laker, 14, sells socks at his popup store at Shelley E Coutts Dance Academy on Tuesday.

CHAT 21 | Issue 74, Winter 2018

Young businessman gives back to charities who have helped him By Rebecca Moore

Flynn Laker is putting his business hat on, or socks more like it. At 14-years-old Flynn is learning what it takes to run his own business as well as giving back to causes close to his heart. He has Down syndrome but is not letting it hold him back from fulfilling his dream of being the boss of a business. With his cousins Nick and Georgia Popham, and his sister Meg Laker, 16, they set up the business Flynn's Sox. As well as learning the skills of what it takes to be a businessman, $1 from every sale will go to the Southland Down Syndrome Support Group in Southland. The launch was aligned with World Down Syndrome Day on Wednesday, which was why he chose the group as his first charity. In the future he will donate the money to other charities who have helped him, including Riding for the Disabled and Conductive Education. When asked about the importance of the business, the first thing Flynn mentioned was supporting charity. "It's really positive ... the reason we got it is because we need the money for [people with Down syndrome]," he said. Money will initially go towards helping support people in the region with the condition, then other charities. On the opening day on Monday more than 200 pairs of socks were sold. Flynn's favourite socks were the yellow ones with squiggles â€“ which he called scrambled eggs â€“ and the hot air balloon ones. However, he picked out all of the many styles of socks and comes up with quotes to put on tags for each online sale. Some slogans read "you are the bees knees" and

"man you're going to look cool in my socks". Flynn's mum Tracey Laker said the business was not a lifelong income for him, but starting business was for him to learn the skills of the business and working hard. "Nothing ever happens if you don't put the work in," she said. "It's great to actually help him fulfil his dream and understand business. "It's wonderful. He's so lucky that his cousins have been through university and see that he has potential." From the moment he was born the family decided he would not be held back by the condition. "Ever since Flynn was born our philosophy was to support him to be the best he can be and be independent in the future. "Children and adults with Down syndrome have no limit on what they can do. They can be as successful as anyone else." The socks were in funky patterns to celebrate difference, she said. "People just love supporting the concept of helping out Flynn in business." - Stuff

Young businessman gives back to charities who have helped him

New Zealand Warriors embrace Mark Dekker By David Skipworth

Photo / Greg Bowker

Mark Dekker in his role with the Warriors. Photo / Greg Bowker

CHAT 21 | Issue 74, Winter 2018

Not many people would get away with interrupting Warriors coach Stephen Kearney while he's delivering a team talk. Fewer still would dare to continue to speak over the top of the notoriously stern former Kiwis back rower and World Cup winning coach. But Mark Dekker – or 'Mark Carter' as he prefers to be known – is the exception to the rule, and the one person guaranteed to turn Kearney's frown upside down. The 31-year-old with down syndrome began working with the Warriors football staff earlier this season and has been welcomed into the club's inner sanctum in his role as the team's official water runner. The longtime Warriors supporter enjoys exclusive access to the players and is regularly included in their team huddles, joining in their breathing exercises and sharing a few motivational words in the lead-up to game day. He picks and chooses his moments to speak and feels comfortable enough to interject – even if Kearney is delivering a fierce verbal spray to his players. "We might be getting a growling and Mark will just walk into the huddle and stand under Mooks' arm or start talking over someone," explained front-rower James Gavet. "Everyone will be grinning and you glance over at Mooks and even he'll give us a look that says, 'I really want to be angry but I can't right now'. "It's usually all business and there's not a lot of time to joke around, but Mark brings out a different side and can lighten the mood." Dekker's connection with the Warriors began earlier this year when Kiwi Ferns playmaker and club community relations coordinator, Georgia Hale, offered him the opportunity to get involved. Twice a week, rain, hail or shine, Carter and his caregiver, Leighton Swann, can be found at Mt Smart Stadium, helping Warriors team manager Laurie Hale prepare water bottles and equipment at training. The club issued Dekker with his own timesheet that he fills out after each shift and his contribution to the club gives him enjoyment and adds some structure to his week. "He comes into most sessions so he's got a bit of a presence amongst the group and staff," said Kearney. "He helps fill the water bottles and the boys have embraced him. He does a pretty good job." Prior to the Warriors' round three win over Canberra, Dekker was invited to share a few words in the team huddle, when he borrowed a line from Kiwi social

New Zealand Warriors embrace Mark Dekker

media star William Waiirua: "Do the mahi, get the treats." "The boys were all buzzing and came and told us what he'd said," explained Swann. "Stephen came over afterwards and gave Mark a big hug and said 'I think we'll stick with that saying for the season'. "Everyone at the club has taken to Mark and shown him a lot of love. I've got a lot of time for the Hale family, they've got big hearts and Lozza needs to be commended for what he does with Mark. "It's so awesome to see the genuine care and love they have for him and whanau environment they have created." While most Warriors fans would nominate club icons such as Stacey Jones, Manu Vatuvei, or star halfback Shaun Johnson as their favourite player, Dekker is taken by Mark Carter – the former All Black who switched codes to play just eight games for the club back in 1996. "That's the name that he associates with and Carter's Warriors number was 31," explained Swann. "Every time he goes into the sheds he shows the boys number 31 and the name Mark Carter. "It might not be the most popular choice but its Mark's choice and he likes the name as well." Dekker is particularly close with Gavet, along with wing Charnze Nicoll-Klokstad and ISP centre Junior Pauga, but has won the entire club over through his infectious sense of humour, positivity and work ethic. Mark Dekker greets Warriors forward James Gavet. "They're a good team," said Dekker. "Rugby league is a great game and they are my good mates. It's awesome. "We work hard but when you do the mahi, you get the treats." Warriors captain Roger Tuivasa-Sheck says Dekker's presence helps keep the players grounded and serves as a reminder of how the club can help people out in the community. "It just puts things in perspective having him here," said Tuivasa-Sheck. "He's a big supporter of the club and no matter what happens or goes on he always turns up with a smile on his face which keeps the boys happy." Copyright: New Zealand Herald.

Guardianship: Making decisions in adulthood By Nan Jensen

CHAT 21 | Issue 74, Winter 2018

The Family Court has the power to appoint a person to make decisions for a person who lacks the capacity to understand the nature and consequences of their decisions and/or the ability to communicate their decisions. Roles can be allocated for very specific decisions or for a broad range of decisions. The most common roles are Welfare Guardian (to make decisions about the personal care and welfare of another person) and Property Manager/Administrator (to make decisions about the property of another person).

Welfare Guardian and Property Manager

Families of people with disabilities need to be aware of the legislation around this even if they choose not to take advantage of it. Not all disabled people can have a decision-maker appointed under this legislation – they need to meet the capacity threshold (or rather lack of capacity threshold). The right to make your own decisions is a core element in the United Nations Convention on the Rights of Persons with Disabilities. The Convention protects the rights of a person to make their own decisions, and states that ‘supported decision-making’ is the correct way for decisions to be made for people with disabilities who may have capacity issues. Many disability groups oppose the current legislation as they believe it interferes with that right. Our government has claimed that the current legislation (which ironically is called the Protection of Personal and Property Rights Act) accords with the convention, because of the following provisions: 1. The requirement that the court ‘make the least restrictive intervention’ in the person’s life and ‘enable or encourage that person to exercise and develop such capacity as he or she has to the greatest extent possible’ (s. 8) 2. The duty of a Welfare Guardian to have as ‘the first and paramount consideration’ ….’the promotion and protection of the welfare and best interests of the person for whom the welfare guardian is acting, while seeking at all times to encourage that person to develop and exercise such capacity as that person has to understand the nature and foresee the consequences of decisions relating to the personal care and welfare of that person, and to communicate such decisions’ (s. 18(3))

Making decisions in adulthood

In my work as solicitor I advise families about this law and I make applications under the Act, if that is what people want to do and if their family members fit the criteria. I make people aware of their obligations if they do get appointed to a role under the Act. In an ideal world, we want every person in New Zealand to make their own decisions. Some disability groups seem to encourage families to make financial and life decisions informally with the consent from their family member with a disability and without having to resort to a guardianship arrangement. In my experience, it is getting harder to navigate the major issues Informally. New Zealand is becoming more litigious and there are more and more rules and accountabilities in organisations, as is appropriate. The Privacy Act for example, can make it difficult for families to get information or be involved where there is no Court order in place. Sadly, I run into too many situations where people are abused or neglected, either financially or otherwise, sometimes by their own family members. So in my view, it is appropriate to have a court-appointed, official role that allows scrutiny of how that role is being carried out. Informal arrangements do not allow for this. Having said that, I do not think the current legislation has enough safeguards – so people may or may not be informed of their obligation to consult with their family member and to consult them and encourage them to make their own decisions – and even if they are, there is no mechanism to check that they are actually doing it. On the other hand, I do not believe we have enough safeguards for people with disabilties in general, whether they have a decision-maker appointed under this legislation or not. Some disability activists however, argue for ‘the dignity of risk’ and they want fewer interventions in their lives. I have sympathy for this view – the issue however is that there are many different types of disabilities and some people are more vulnerable than others. The issue is finding a balance between freedom and protection – because the more freedom, the less protection (this is true about everything in life) and clearly the level of protection needed and wanted will vary from one situation to the other. I have seen cases where the courts have allowed welfare guardians to treat their person with a disability like a child and prevent them from being independent, but I have also seen this happen in

situations where there is no welfare guardian. As mentioned, I have also seen abuse and neglect both with and without a Court appointment. I am afraid there are many people with disabilities who are being abused or neglected and nobody knows, because they are 'off the radar' of any organisations,including the courts. New Zealand does not have a Public Guardian (as in Australia), or an organisation along the lines of Age Concern or Oranga Tamariki for people with disabilities. I am sure there are people who know abuse is happening but they donâ€™t know where or how to report it. In this context the appointment of a Welfare Guardian or other role under the legislation at least provides a regular assessment, as it is reviewed every three years. The review is the time when the court should be checking that the appointee is carrying out their role appropriately. Reviews normally take place at 3-yearly or 5-yearly intervals but a review can take place at any time, if someone applies to the Court and the Court grants their application for review. If there was a Public Guardian, that office could request a review if an average citizen was unwilling to do so but had a concern. In my view, there are two options for improvement: Firstly, we can modify the legislation to ensure that appointees are aware of their responsibilities and to check that they are doing their job. This of course will upset families who have looked after their child for 18 years without any issues. The fact is though that when a person becomes an adult, the law is and should be different, even if the person operates at the level of a child. I believe combining this with the appointment of an Office of the Public Guardian would work well. A second option, which exists in Canada and is being looked at in Australia and other jurisdictions, is to have a system of registering support people (supported decision-making), so people with a disability still have the legal decision-making power, but they or the court are able to officially appoint someone to support them. This way there is a record of who is appointed and a way to review those appointments if there are issues or concerns. A Public Guardian or other reporting mechanism would be useful here too.

property (there are separate documents for each). You need to have the capacity to make these. These can be helpful for people who can give their own medical consent and make their own personal care and welfare decisions but need help with managing their money, because the Property one can be activated while the person has capacity. There is currently a government initiative to get more people to do these, particularly older people. In my practice I have witnessed powers of attorney for people with Down Syndrome and other intellectual disabilities. I do this in cases where I am certain that the person understands enough about the document to satisfy me that they could sign it, but I doubt many other lawyers are willing to do the same. I will often get a letter from their GP before I witness the documents to ensure that they support my view. Enduring Powers of Attorney are for people who have at least some capacity to understand their decisions, and they need to understand the significance of giving Power of Attorney. I believe everyone with capacity should have these in place. I had all of my children do them as soon as they turned 18. Anyone can have an accident or a medical event that reduces or removes their capacity. If you have not done powers of attorney and you do lose capacity (as many people do as they get older), then someone in your family will have to apply to be your welfare guardian and property manager. I am aware that I sound like I am trying to sell my services when I say these things, but in my view these documents are like insurance. You hope you will never need them, but if you donâ€™t do them your family may wish that you had. Enduring Powers of Attorney are prepared and witnessed by a lawyer. Unlike Welfare Guardianship and Property Management, no Court order is required and there is no expiry period. For more information about Enduring Powers of Attorney, please have a look at these resources: http://www.peoplefirst.org.nz/news-and-resources/ easy-read-resources/ Nan Jensen is a consultant with Quinlaw Solicitors

Enduring Powers of Attorney

Enduring Powers of Attorney are documents where you appoint someone to make decisions for you about your personal care and welfare and/or

CHAT 21 | Issue 74, Winter 2018

Invercagill woman developing photography business

An Invercargill woman has turned her passion for photography into a business. Roseanne Zyskowski, who has Down syndrome, has put 101 photos of her favourite places throughout Invercargill into a calendar. Zyskowski, who has been a photographer for a year now, has taken pictures of the Reading Cinemas, Queens Park, Thompsons bush as well as her own backyard. The most difficult part of the project was getting motivated on some days but with the help of family, friends and support workers she got it finished, Zyskowski said. Her mother Clare developed the idea after attending a social enterprise workshop held in Invercargill in November. The initiative was run by the Ä€kina Foundation with the support of the Community Trust of Southland, Venture Southland and the Southland Regional Development Strategy group. The idea was to give Roseanne a way in which she could use her passion for photography to support herself.

"When people hear the word 'syndrome' the story they have in their head might be quite different to the way a lot of young people with Down syndrome are growing up and developing." The vision she developed at the workshop was to change the story around people living with down syndrome and give them the opportunity to stand on their own feet. Included on the back of the calender was a quote "No disabilty, only people," that was designed to encourage others that those living with disabilities are just normal people in the community. The hope was that by showing Roseanne how she could develop her passion for photography, she could turn in into a microbusiness. "She can actually take her photography and do something with it." If the business did not succeed it would still be a valuable learning opportunity for Roseanne, Clare said. Each photo had a story or a person behind it, Roseanne said. She is selling the calendars for $22 Photo by Kavinda Herath, Article by Dave Nicoll

Invercagill woman developing photography business

STRIVE members introduce themselves STRIVE is a team of people with Down syndrome who are members of an advisory and leadership group who advise and support the New Zealand Down Syndrome Association National Committee, and are ambassadors and advocates for people with Down syndrome. STRIVE’s mission statement is: We believe in people with Down syndrome and value and promote their voice. The initials of STRIVE stand for: • • • • • •

S peak up to be heard T eamwork R espect I nclusion V alue individuality E mpowerment

In this edition of Chat 21 the STRIVE team will introduce themselves.

Andrew Oswin My name is Andrew Oswin, I am 28 years old and I live with my family. I started to attend a leadership development self-advocacy camp which the IHC hosted in Christchurch 2008. I learned a lot about how to be an advocate, ambassador, public speaker and leader to speak up for myself and other people with Down Syndrome. Being part of STRIVE is very important to me because I get to meet and make new friendships with New Zealanders who have Down syndrome, it gives me the opportunity to attend workshops, annual general meetings and forums. I feel that I am accepted, included and valued in the community from being involved with STRIVE and it is the thing I enjoy the most. I have got two part-time jobs. I work for Parent

CHAT 21 | Issue 74, Winter 2018

to Parent Greater Canterbury and I am a Regional Administrator. In my role, I get to do computer and database administration, photocopying, scanning, filing in alphabetical order, confidential and general recycling, to attend meetings and functions. Sometimes I will attend the Disability Support Services Consumer Consortium representing the New Zealand Down Syndrome Association. My responsibility is to represent the Down syndrome community and to type up a report on a laptop computer which I have been provided with. For voluntary work I go to the Harakeke Club to help the elderly who suffer from Dementia. I help in the kitchen and sometimes I get to assist them with their activities and music entertainment. I think the biggest misunderstanding for society has about people with Down syndrome is fearing the unknown. At school students with Down syndrome must have a daily routine and be involved in activities.

Edward Borkin

Alexandra Hewitt

My name is Edward Borkin and I am a member of STRIVE. I am 38 years old and live at home with my Mum and Dad. My two younger brothers are married and have left home. I have a job and work 5 days a week. I have been a trolley assistant at Pak n Save in Botany since August 2001. I enjoy swimming, table tennis and bowling. I have won a gold medal in the Special Olympics World Summer Games in Greece for 100 meter backstroke. That also earned me a National Achievement Award in 2012. I enjoy watching TV and in particular Coronation Street and Home and Away. I am also an advocate for people with disabilities. I do public talks like “Success in Schools” which helps teachers to understand what life is like with Down Syndrome. I would like to tell everyone to respect and include people with Down Syndrome. I think the biggest misunderstanding people have about people like me is that they are nervous about what I might do until they get to know me and about whether I am able to do things and how they might even talk to me.

My name is Alexandra Natalie Christine Hewitt. I am 30 years old and I live by myself sometimes in the weekends I stay with two of my best friends socialising. We became a Member of the NZDSA and then decided to make a team called Strive to discuss things we would like to happen to change people’s attitude and accepting people with disabilities in society. My biggest passion is working with slow-learning people to give them a chance to have full-time or part-time paid employment. We are also here to share a message that we're all different, that all lives matter and that everyone has a right to live a happy and healthy life. I enjoy spending time with mum having lunch, trying different foods and learning to get my driver’s licence. I am studying the Road Code now, so one day I can drive about everywhere. I have a part time job at NZAS (Tiwai) as a mask and helmet servicer. I think most people enjoy people with Down Syndrome because of our kindness, mostly always smiling and happy disposition. Having said that I have come acoss other girls in the streets saying "What are you looking at?" and I’m not sure what they are on about, but mostly other people accept me as I am.

STRIVE members introduce themselves

Sarah Jones

Duncan Armstrong

I am Sarah Jones and I come from Auckland. My goal was to move out of my parents’ home and my mum and dad helped me to find a flat to live in. So I don't live with my mum and dad, but I live with a flatmate!! I am very independent and like doing things for myself. I am on STRIVE as a self-advocate, I like these workshops, as I learn lots at the workshops and I have lots of fun with my other STRIVE members. Leadership, building friendships and being honest are important to me.

My name is Duncan Armstrong and I live in Wellington. I live with my Mum and Dad. My sister Zoe has gone flatting. I have lots of cousins and I like to catch up with them. It’s important to have a job, be independent and stand up for disabled people’s rights. I have represented the NZDSA on the Ministry of Health Consumer Consortium and the Wellington Youth Council. My passion is performing arts. I am a dancer, an actor and a muso.

Advocating for Our Rights I attended a STRIVE funshop in Long Bay, Auckland at the Thomas Vaughan Park earlier this year. The funshop was held for four days and I had a great time catching up with my fellow members. The topic we were focusing on was ‘Advocating for Our Rights’ _ Becoming a STRIVE Champion. A group of other self-advocates from across New Zealand participated in a self-advocacy group and building on leadership. Everyone got filmed for a video which got called, “Dear Health Professionals", and this film got produced by Borderless Productions. The film was used for World Down Syndrome Day 21st March 2018. We got to work individually to review our journey, declarations, position statements and research. All of us were very good support buddies towards the self-advocates who attended. Andrew Oswin is STRIVE Editorial Committee Representative Christchurch

CHAT 21 | Issue 74, Winter 2018

Erin Smith

Caroline Quick

My name is Erin Smith, I am 34 years old and I live in Kamo, Whangarei, Northland. I work at Whangarei Base Hospital as an administrator of Human Resources Department. My interests and hobbies are: 'Mindfulness', colouring, crosswords, ahopping, walking, dancing, music, youth club and my baby nephew. The STRIVE Funshops have helped me to become more confident in my work and in my life. I have been challenged to get out of my comfort zone. I was really shy talking to groups and now am much more relaxed, I have had to consider other people's points of view. I really enjoy meeting up with the other STRIVE members. We are now close friends. I am a Strive Rep to the NZDSA Committee. I use the skills I've learnt at workshops to support and advocate for young people with DS in my community. I believe people with Down Syndrome should speak up more for themselves.

My name is Caroline Quick I am 29 years old. I live with my parents at the moment. I work as a volunteer at a rest home and on a Monday I help with different activities. I love cooking, hanging out with my friends, shopping, going to the movies and being with my boyfriend. I love going on holidays and trips away. I have been with STRIVE for a long time now and I got chosen to be on the leadership group. Advocacy is important to me. I believe all people with learning disabilities got a powerful voice and dedicated beliefs. I love being part of STRIVE because people with Down Syndrome are amazing and do amazing things in their lives. I believe all people with Downs Syndrome are powerful and amazing.

STRIVE members introduce themselves

STRIVE member joins Disability Consumer Consortium Recently I attended a meeting for the Disability Consumer Consortium at the Brentwood Hotel, Wellington for a three day conference. 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 impairments, 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: • the Disability Support Services are updating their report and are working in collaboration with Whaia Te Ao Marama. The hospital staff are finding out that the behaviour of people with mental disabilities is too challenging for them and placing their work colleagues at risk; • the need to support tangata whaikaha to recognise experts to participate in disability training, to ask staff to promote disability information to Maori communities; • Work and Income New Zealand should have friendly staff that need to have people skills. Government agencies need to understand Kiwis with Disabilities to help them engage from both sides; • learning how different government agencies can help people with disabilities to engage with them by giving some good advice and feedback. We have every right to be treated with respect, remembering we are allies and we are not enemies. Everyone has the right to know what the information is they are collecting, receiving the feedback even if it is not going to be used and being informed about what is expected from us. We all need to be treated as equals, all having rights and responsibilities; • Kiwis with disabilities need to know how to live in the community within the family home, transferring into school and the workforce to enable them to live healthy enriched lives. The message I would like to spread is knowing who needs the information and to use the agencies to spread the information through LifeLinks, IHC, New Zealand Down Syndrome

CHAT 21 | Issue 74, Winter 2018

•

Association, Canterbury Down Syndrome Association and Healthcare New Zealand. The resources we need to use for people to have access to computers, community, post and postage included or by snail mail; improving the Disability Support Services complaints webpage by having more visuals. Not everyone can read and type. The best way to present information to meet these needs is to have Easy Read documents with lots of visuals. I think the website is to include information about how to make a complaint. The best way to make it clear for people with disabilities complaining if their supports are not responding to Te Ao Maori is to find an advocate or support person that will help to support you in helping how to make a complaint; Kiwis with disabilities can live with their parents at home and can decide where to live in the future. Their parents can help to support their son or daughter if they would like to go flatting one day; Residential pricing model will allow for regional cost factors, people can live alone and they need to have community interaction so that they are not isolated. When living on their own they will need some funding for transport costs to allow them to be involved in the community. In aged residential care it now results having less staff and a reduction in the quality of care. When in care they will require having time and could not be rushed so that the provider will not allocate time doing the tasks providing a quality service;

‘The future is for the living, you can see what tomorrow will be and what value there is in our everyday lives’. I am hoping that many people, organisations and viewers will enjoy reading this report. I greatly enjoyed my time at the Disability Consumer Consortium meeting. Reported by Andrew Oswin STRIVE Representative New Zealand Down Syndrome Association

IHC book reviews Here are just some of the new resources in the IHC Library. If you would like to recommend any books, DVDs or games for the library we would love to hear from you. The Library has a significant and growing collection of children’s picture books. These are a wonderful resource that can be used by parents at home and by teachers and teacher aides in the classroom.

Pablo Pineda: "Being different is a value"

Albert Bosch & Maria Sala ; illustrated by Silvia Alvarez Pablo Pineda is the first European with Down Syndrome to obtain a university degree. A teacher, a writer, and an actor, he radiates charisma and the will to learn. This is his endearing story which reminds us that the only disability is not understanding that all of us have difference abilities" - back cover. Booklist describes it like this – “Pablo Pineda's life story is remarkable and inspiring, reminding us that anything is possible. This beautifully illustrated biography chronicles his life from birth to success.” Translated from Spanish to English.

We are all born free: the Universal Declaration of Human Rights in pictures

This beautiful picture book was produced to commemorate the 60th anniversary of the adoption in of the Universal Declaration of Human Rights. A different international artist illustrates each article of the convention. The 30 articles have been simplified for children by Amnesty International. The book includes forwards by John Boyne, author of “The boy in striped pyjamas” and actor David Tennant.

IHC Book Reviews

Sometimes I feel sad

Written and illustrated by Tom Alexander With clear and simple illustrations this book explains that you are not alone if you feel sad. This is a useful book for children who struggle to express their emotions. I t ' s n o t a l ways e a sy to encourage children to open up about their feelings, and even if they are willing to do so, they can struggle to express themselves, so books can be a big help to both child and adult. Feeling sad is only natural at times, and children should not feel there is anything wrong in feeling sad. This empathetic book, through simple text and expressive line drawings, helps explain to children aged 5+ that they're not alone in feeling this way, and the approach is especially useful for children who struggle to express their feelings. Simple and effective. (Editorial Review Amazon.com)

Ebooks in the Library

The Library also has a growing collection of ebooks. The ebook collection is always available and popular series such as the “Can I Tell You About…” books are also ebooks. In many cases the library has access to the ebook before the hard copy arrives and so ebooks are a great way to take a look at a book before borrowing a print copy. Ebooks can be found using the library catalogue and are accessible with your IHC Library username and password. If you’ve forgotten your login details please get in touch and we can reset it for you. Please do not re-register. Please contact your library team (Phil, Ros, Ann and Michael) on 0800 442 442, email us at librarian@ ihc.org.nz or visit the online catalogue at https://ihc. mykoha.co.nz/ You can watch our library video at https://www. youtube.com/watch?v=AunmBYTIZTM

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

Date:

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

Rose Award

I would like to encourage you to nominate a deserving individual or organisation in. 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 hello@nzdsa.org.nz

Friday the 26th October 2018

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, Winter 2018

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

Recipe book Contains numerous gluten-free recipes.

$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

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

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, Winter 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.

National Achievement Awards 2018.

0800 693 724 | nzdsa.org.nz