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CHAT 21

Journal About & For The New Zealand Down Syndrome Community

ISSUE 83, Spring 2020 ISSN 11776323

Our People

Aidan Walsh

Keaton Bonser

Paris Parker

Rocky Cornes

Contents

From the Editor

HOW TO NAVIGATE THE MAZE OF BENEFITS AND SERVICES

ALL POLICY ISSUES ARE DISABILITY POLICY ISSUES

THE ROSE AWARD PRESENTED TO…

THE STORY OF HANGPOD

OTAGO DOWN SYNDROME ASSOCIATION FLYING HIGH

HOLIDAY IN MY OWN BACKYARD

JOSEPH GETS PHYSICAL

ALEC COLE IN HIS DREAM JOB

COVID-19 FORCES US ALL TO MAKE MAJOR CHANGES

ATTITUDE AND TALENT SHINE FOR POPPY STAR LIBBY HUNSDALE

HOW SPEC-TACULAR

PEN PALS IDEA BECOMES GLOBAL SUCCESS STORY

POLAR BEARS TAKE THE FIELD IN CHRISTCHURCH

RETIREMENT MAKES TIME FOR RESEARCH…

KEEPING OUR ATHLETES SAFE

IHC LIBRARY

NZDSA NOTICES

CONTACT DIRECTORY

OUR PEOPLE

ME AND MY PET

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

In this crazy year we will remember as 2020, the Down syndrome community is going strong with people with Down syndrome showing us what it means to have resilience. However brave and tough we all are, we all need help. Unfortunately, getting that help from the organisations who need to help our families is not always easy to find. In this edition of CHAT 21, we have tried to pull together all the available information on funding and other support your family or your child may be eligble for. As all parents know, the funding process is often a challenging and at times traumatising experience, at schools, at the doctor or at WINZ. Government agencies often do not fully disclose what you are entitled to or make it difficult to access, and parents often rely on other parents to find out what they can get. We hope the article in this CHAT 21 will be useful, especially for younger parents to navigate their way through life. There are many options to get support, at a national level but also local level, so it pays to investigate and never be shy to ask! With the available funding, our young people can live very independent and meaningful lives. In this CHAT 21, there are many examples of what people with Down syndrome are capable of, like Alec talking about his work place, the young rugby players from the Polar Bears in Christchurch hitting the field and Joseph scoring tries for his Tauranga league team. It is also great to see that Libby Hunsdale is nominated for the Attitude Awards for her role in Poppy, alongside trailblazing entrepreneur Jennifer de Bel who is recognised for her work in support of our community. I hope you enjoy this edition and continue to send me your stories and photos so we can share them with the rest of our community. Coen Lammers editor@nzdsa.org.nz

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.

HOW TO NAVIGATE THE MAZE OF BENEFITS AND SERVICES Families with a child with Down syndrome in many cases face a lifetime of navigating Government departments and agencies to receive the support they need and are entitled to. Editor COEN LAMMERS makes an attempt to point you in the right direction. Dealing with the Ministry of Health (MoH), Ministry of Social Development (MSD), Ministry of Education (MoE), and their off-shoots can be difficult, frustrating, infuriating or even traumatic. Having a child with a disability creates additional pressures on families, but those organisations and officials that are supposed to support your family dealing with unorthodox circumstances often only add to the stress levels. Social media groups are overflowing with endless horrific examples of parents having to fight for what they are entitled to. Many dread the face-to-face encounters with officials at WINZ to talk about benefits, or MoE staff when fighting for teacher aide funding in Individual Education Plan (IEP) meetings. Many simply give up and forfeit what they are entitled to and sometimes desperately need. Trish Grant is an experienced advocate for IHC and has seen every scenario of this state-inflicted trauma first-hand. “Families are dealing with a complex maze of entitlements,” says Grant, whose organisation is working on a new digital tool to help families n av i g a te t h e d i f fe re n t d e p a r t m e n t s a n d entitlements. “At the moment it is impossible for any family to find their way with the information available

from the Ministry of Health, MSD or any other Government department.” Grant says that the system is even difficult for those who are dealing with it on a daily basis. “One pediatrician once put up a slide at a conference to show the pathways to funding and services, but you’d have to study it for hours to make sense of it. It was the most bizarre slide.” The IHC advocate also recalls a recent court hearing to secure a Family Carers Benefit, in which the attending magistrate described “the Ministry of Health funding policy as impenetrable”. So if you think you are struggling to make sense of it all, you are not alone. “It is still a maze for people to get through, especially for new parents.” Grant says that most parents find out what they can get through word of mouth. “That’s why groups like the NZDSA are so important where parents can share information with other parents to find out about financial support or what is on offer as far as support services,” says Grant. Thankfully, Government agencies are recognising that they need to make accessing supports easier for disabled people and their families, and the primary examples of this is Individualised Funding, Enhanced Individualised Funding and the Enabling Good Lives (EGL) approach. Individualised Funding, Enhanced Individualised Funding and the Enabling Good Lives approach provide disabled people and their whānau with more choice and control in their lives, offer more flexibility and provide more opportunities to make decisions about how to use the funding to suit the needs of the disabled person and their family. EGL started in 2011 as a partnership between the disability sector and agencies aimed at long

term transformation of how disabled people and families are supported to live everyday lives. EGL aim is to create a life plan for its participants and through a navigator applies for the necessary funding through different agencies to create a single funding pool to fulfil the life plan for the person with the disability. The Ministry of Health allows people to receive Individualised Funding to buy in services they require, but that only covers MoH traditional supports like Personal Care or Household Management, Respite Services and Carer Support. Enhanced Individualised Funding enables people to pay for a wider range of disability supports that have not traditionally been available and this allows for more flexibility and greater control of how you use your disability support budget. In 2017, a group of government ministers involved in the disability sector approved a new overarching programme to Transform the Disability Sector, The new system, Mana Whaikaha, a prototype in Midcentral was co-designed with disabled people and whānau, and others in the disability sector. It is based on the Enabling Good Lives vision and principles. The interest in the Mana Whaikaha programme has been overwhelming and will provide invaluable information for the Government to implement a nationwide transformation. Until that new system is established, here are the key funding streams families need to be aware of.

MSD and WINZ benefits The Ministry of Social Development offers two global benefits and all families are entitled to the Child Disability Allowance. This allowance is for carers of children with a disability under 16 and is currently $49.25 a week. Officially, this allowance is reviewed every year,

but no longer required for children with Down syndrome, so make sure you remind the person who may still want to assess your case, especially when they start asking silly questions like “does your child still have DS?”, which has happened to many families. IHC advocate Trish Grant says that the number of parents receiving the Child Disability allowance is decreasing. “Many parents don’t know it even exists so I think there is a big issue there.” Once your child turns 16, your child is entitled to the Supported Living Allowance, if the child is cared for full-time or would otherwise need residential care (or the equivalent). Currently the benefit rate is $253 if your child is 16 or 17 and increases to $307 when they turn 18. Your child can still have a part-time job but once they earn more than $115 a week, the benefit will start getting deducted. On top of these benefits, you can apply for a Disability Allowance of up to $65 a week, which is for expenses your child may incur due to their disability. This includes medical appointments, travel costs, prescription fees or heating. You will need to get your GP to confirm these needs and keep your receipts, so this benefit can be a hassle for the relatively small amount and many families choose not to go through the process. Depending on your living situation, these benefits can also get topped up with an Accommodation Supplement, which ranges from $50 to $120 a week. If the person with the disability owns their own property you can also contact your local council for a Rates Rebate. You can visit the Department of Internal Affairs' (DIA) website for more details. Aside from these allowances, MSD can also provide you with a Community Services Card which provides multiple benefits and savings when paying for the bus, pool or other services. Finally, MSD has the ability to provide one-off payments to provide assistance in particular hardship situations. Like other children without a disability, children with Down syndrome also qualify for the standard Childcare Subsidy, or OSCAR subsidy for after school and holiday programmes. It is also important to make sure your family gets

their full entitlements under the Working For Families tax scheme.

Ministry of Health benefits The Ministry of Health also offers a list of support options, but again, they are not easy to access or to understand. The level of support is determined by an assessment carried out by your local Needs Assessment and Coordination Service (NASC) which is different in each region. You can find your local service under the Respite Care section on the Ministry of Health website. The MoH offers Carer Support, which enables you to pay a support person to look after your child while you can take time out for yourself. The Respite Support allowance is also aimed to give parents a breather, but in this case, the allowance pays for your child to go somewhere for an activity or pay a support worker to take your child to an activity. The level of these benefits are determined in your NASC assessment and depend on your personal situation, like how many other children you care for, how old your children are and other issues that create additional stress in your household. Sadly, it does not pay to put up a brave face, because if you tell your assessor that everything is peachy, you will receive little support, whilst describing your worst day will get you more support. A major breakthrough in legislation in 2020 now makes parents or siblings of children with Down syndrome over 18 eligible for Family Funded Care. This change has been created to facilitate disabled people who want to employ and eligible family/whÄ nau member to provide some or all of their supports. Currently, the hourly rate for Ministry-funded family carers is $20.50 per hour, which increases to $25.50 an hour if you have been caring for your family member for more than 12 years after they turn 18. Parents and siblings from 16 years onwards are eligible to become the carer.

The Ministry of Health also provides additional benefits, but they are not easy to locate or access. Most families are eligible to have costs for glasses, fully or partially funded, through the Spectacle Subsidy for children under 15. This covers lenses, frames (and repairs!), examinations and eye patches. You may also get some funding for dental work and other health needs, but you need to talk to your NASC, your pediatrician or GP to find out exactly what your funding covers. If you need to travel for treatments regularly or long distances, you also need to ask for the National Travel Assistance Scheme. The Ministry of Health can also make equipment available through their providers. Accessable and Enable NZ. This could include adjustable beds, shower stools or communications devices. For those families who need some more assistance getting their children ready for school or when they transition to their own home, the Ministry of Health also offers the Home and Community Services. For younger children this could consist of s o m e o n e p rov i d i n g s u p p o r t w i t h m e a l s , showering or getting dressed. For young adults with Down syndrome who start to live independently, this service supports this transition by helping out with cooking, laundry and cleaning.

Ministry of Education Those of you who have or had children at school will be well aware of the Ongoing Resourcing Scheme, better known as ORS funding for students with High Needs and Very High Needs. To access ORS you will need to complete an ORS application. It is important to remember that the application process is emotionally challenging because instead of celebrating and focusing on the achievements and strengths of the student, it requires you to look through a deficits lens to ensure that your child is well resourced. The ORS application has nine criteria and

requires you to identify your child’s need for learning support across five areas: learning, hearing, vision, physical, or language use and social communication. Parents say it helps if you recognise that by accurately reflecting your child’s learning support needs it will clarify whether they meet the eligibility criteria for ORS. The ORS application will be submitted to a team of verifiers who follow a verification process. At least three verifiers, working from separate locations, independently consider each application. Once the verifiers make a decision, a letter is sent to the parents/ whānau and the early intervention centre or school. Resources for students in the Ongoing Resourcing Scheme may include specialists, additional teachers, teacher aides, and a grant for consumables. If the Local Ministry of Education is the fund holder, then a portion of the funding will be used for the battalion of specialists like speech, occupational and physio therapist and others employed by the Ministry. However, many parents feel that the specialist focus is on writing reports and making recommendations for teachers on how to work with their child rather than providing what they desperately want, which is one-on-one therapy. Another very important component of ongoing resourcing is to ensure that your child has a current and well-designed Individual Education Plan (IEP) as ongoing resources will be allocated based on individual needs identified through the IEP process. It is essential that you as a parent are involved alongside the educators and professionals with developing the IEP. The NZDSA recognises for families each step of the ORS process is brutal and at times heart-breaking as there is never enough funding available. The level of ORS funding depends on criteria across the learning support areas and will include things like how independent your child is, whether they have multiple health challenges, whether they are toilet trained and whether they tend to run away. For this last challenge the Ministry, thankfully, has a separate Property fund they can call on to create a safety fence around the school if required. Parents tell us that they are frustrated as they feel the ORS funding is not always transparent and not always fully dedicated to the child who receives the funding. Some schools, with genuine motives, pool the ORS funding to

provide learning support for as many students as they can, including those who did not receive any funding. So it may pay to ask to get some clarity on how your funding is used. Many deserving children struggle to get ORS funding so children with Down syndrome are fortunate as they should qualify as high needs students. It is worth noting that the review process for ORS funding can be used when an application for ORS is declined, or when a student receiving ORS funding has a significant change in their circumstances. Getting your children to and from school can be a logistical or safety challenge so make sure you also look into School Transport Assistance, or you may be eligible for a taxi through the Total Mobility Scheme. To find out more about ORS go to https://www. education.govt.nz/school/student-support/ special-education/ors/

Funding through other charities As the state funding only goes so far, numerous charities and trusts have jumped into the breach to help families at different stages of life. To get a good idea of what is available in your region, refer to the website www.Firstport.co.nz which lists all the support services and funding agencies available in New Zealand. One extremely successful charity is the Upsidedowns Education Trust which provides funding for speech therapy for children with Down syndrome, which is a vital asset to every child but often difficult or expensive to access through other channels. If you child is keen on sport, it is also worthwhile to get in touch with the Halberg Trust who provide equipment and coaching for disabled New Zealanders to get involved in sport. The Halberg Trust has helped many children fund a trike to enable them to bike with their families or their peers, but you can also try to funding for a trike through the Variety Children’s Charity. Each region has dozens of philanthropic organisations that are keen to support families for individual needs or group activities, so make sure you have a good look around and see what’s available. Most importantly, do not be shy or modest to ask and gratefully accept all the help you can get for your family.

Neo Notes

ALL POLICY ISSUES ARE DISABILITY POLICY ISSUES By Zandra Vaccarino National Executive Officer NZDSA

Kia Ora, The Disability Sector Election Event was themed “All policy issues are disability policy issues” which really resonated with me as I believe that legislation and every Government policy, plan or guideline will serve to include, enhance or exclude participation and leadership of disabled people in society. I also believe that all qualitative and quantitative reports, not just government reports, become vehicles to drive and influence change. Whilst we know that all Government policy should be developed with a disability perspective lens and should consider the needs and aspirations of disabled people and their family and whānau, we still see policy that fails to reflect how the rights of disabled people outlined in United Nations Convention on the Rights of Disabled People are facilitated, protected or upheld. The value of changing legislation, policies and plans is that it makes universal change and if done correctly, can bring about transformation which will see all people, including disabled people enjoying full citizenship rights. So I was delighted to see that through the

ongoing work of Access Alliance and all their supporters that the Cabinet Social Wellbeing Committee agreed on the 28 July 2020 to push ahead with drafting an accessibility legislative framework. This new legislative framework will act as a vehicle for progressive implementation of accessibility.

Significant policy changes The past three months has also seen other changes to legislation, policies and plans. I will not mention everything, but I will highlight a few that you might be interested in exploring further. Education and Training Act 2020 The Ministry of Education states that the Education and Training Act is the “biggest rewrite of education legislation in decades". It aims to give all children and young people a high-quality, culturally responsive, seamless and inclusive education from early learning, through schooling, and into tertiary education, vocational training and employment. I feel that transformational changes in the education system are still needed before we can say that the education system works for all children.

NZDSA Committee members and Christchurch committee representatives

However, this legislation addresses the right of all children to attend school or kura for all the hours they are open, which means that schools can no longer suggest that students only attend part-time. This piece of legislation becomes a mechanism for advocating for the rights of students to attend school on a full-time basis, so if a school suggests part-time attendance for your child, you can remind them of their obligations under the Education and Training Act 2020. Equity settlement and professional development for teacher aides The NZDSA and parents have advocated over a long period of time for teacher aides to receive ongoing training and to create a career path for them, so we welcome the investment in teacher aides through the equity settlement and new funding for professional development. International Guidelines for the Education of Learners with Down Syndrome Down Syndrome International (DSi) launched the first International Guidelines for the Education of Learners with Down Syndrome in July 2020 after extensive collaboration with experts and their

global network of members and stakeholders. The guidelines: • Are the first international best-practice guidance in this area and were written by educational professionals and experts in the field, with input from our global network of members and stakeholders, to ensure their global relevance and value. • Provide best-practice guidance for learners, teachers and managers in pre-school, school and post-school education settings to promote life-long learning. • Promote life opportunities and quality of life of people with Down syndrome. • Promote inclusion in society, interests and friendships. • Can facilitate greater independence and future employment. Disability Employment Action Plan The Government has also released “Working Matters”, the Disability Employment Action Plan. This all-of-government Action Plan aims to help ensure an inclusive economic recovery from

Neo Notes COVID-19 where disabled people and people with health conditions have equal access to employment. You can access this document on the MSD website. Policy that Works: A fair go for disability employment post COVID-19 Workbridge Inc has launched "Policy that Works: A fair go for disability employment post COVID-19", a policy paper which focuses on improving the employment of disabled people. Workbridge says the policy intends to contribute to the public discussion about how we can get more disabled people working during an era where bold public policy thinking is urgently needed and should be encouraged. Workbridge has outlined important changes that they feel would have a positive impact on the lives of disabled people. You can access copies of Policy that Works from the Workbridge website. Deaths in residential services In July, Peter Boshier, the Chief Ombudsman, published Off the Record, an investigation report into the Ministry of Health’s collection, use, and reporting of information about the deaths of people with intellectual disabilities living in community residential services. Peter Boshier states the reason for the report was that “in 2018, serious concerns were raised with me about the recent deaths of a group of people with intellectual disabilities receiving full-time residential support. The concerns primarily related to a lack of visibility surrounding the deaths”. He goes on to say that he has “found that the Ministry’s arrangements for collecting information about the deaths of its service users were not adequate or robust”. The Ministry of Health has accepted the 10 recommendations made in the report. You can access this report on the Ombudsman website. The Royal Commission of Inquiry into Abuse in Care The Royal Commission of Inquiry into Abuse in Care is a Royal Commission established in 2018 by the New Zealand Government. The establishment of this Royal Commission is a critical step to acknowledge the call for this level of enquiry from survivors, people in the disability

sector and the wider community, the Human Rights Commission and the United Nations. The Royal Commission is looking into what happened to children, young people and vulnerable adults in State and faith-based care in Aotearoa New Zealand between I January 1950 and 31 December 1999 inclusive. The Royal Commission does have discretion to consider abuse and neglect that occurred beyond this timeframe. The Royal Commission is set to run over several years, with an initial report to be provided by December 2020 and a final report to be delivered before January 2023. I noted that as I was writing this piece, the Royal Commission has held its 500th private session with survivors and that to date about 17000 people have registered to speak with the Commission. The inquiry will be able to address the historical abuse and neglect of survivors as well as making recommendations on how Aotearoa New Zealand can provide better care for children, young people and vulnerable adults.

News from the NZDSA T h e N Z D SA N a t i o n a l C o m m i t te e m e t i n Christchurch from the 7-9th August. The NZDSA National Committee attended the Christchurch Down Syndrome Association fundraising evening so that they could meet the Christchurch families. They also met with representatives from the Christchurch Down Syndrome Association’s committee on the Saturday afternoon. I represented the NZDSA at the Asia Pacific Down Syndrome Federation online AGM on the 4th September 2020. This AGM included an opportunity for representative countries to share what they are currently working on and how they are managing to operate during COVID-19. It certainly was apparent that countries that are able to utilise technology to deliver support and information are in a better position to support their communities.

IHC library I wonder if you use the IHC library. It is a great free service to access resources. The Wellington Down Syndrome Association approached the IHC library to see if they would manage numerous books and educational resources that Wellington

Zandra collecting all the boxes of Hangpods from Nasrin

were managing for their members. IHC library agreed to establish and manage a dedicated catalogue for the Down syndrome community which would then become nationally available. Subsequently, the Auckland Down Syndrome Association has also donated resources to this catalogue and the NZDSA will also be donating resources to add to the catalogue. You can contact IHC to access information on the range of resources currently available. This valuable service is free. I would like to thank the Wellington and Auckland Down Syndrome Associations for sharing their resources with the wider Down syndrome community.

October is World Down Syndrome Month In closing, this year we couldnâ€™t get together to celebrate World Down Syndrome Day because of COVID-19 lockdown, but hopefully we can all meet in our communities during October to celebrate World Down Syndrome Month. We would love to know how you celebrate World Down Syndrome Month, so send your photographs and stories to Coen at editor@nzdsa.org.nz Hei konei rÄ Zandra

Rose Award

THE ROSE AWARD PRESENTED TOâ€Ś NASRIN & RAJIV ANUSHAN The NZDSA has nominated Nasrin and Rajiv Anushan for the Rose Award for their donation of 400 Hangpods to the NZDSA. Hangpod is a beautiful and durable indoor swing that can be used by children between 3-10. When contacted by Nasrin and Rajiv, the NZDSA immediately realised that the children of our families would really enjoy and benefit from using a Hangpod. We expected to receive a few donations, but to our surprise the extremely generous donation consisted of 400 Hangpods in bright orange and purple which, of course, are the NZDSA colours. This was an extremely generous donation and the NZDSA would like to thank Nasrin and Rajiv for partnering with the NZDSA to provide our members with a valuable resource for their families so their children with Down syndrome and their siblings can have a place to have fun and relax. I am sure you will join me in thanking Nasrin and Rajiv for their generosity. You can read more about Nasrin and Rajivâ€™s story of Hangpods on the next page. If you would like to receive a Hangpod for your child, then please send us a paragraph telling us why you would like a Hangpod. Please email Linda nzdsa1@xtra.co.nz And naturally we would like to see a photograph of your child enjoying their Hangpod so we can share it with our readers of Chat 21. The NZDSA would also like to thank and acknowledge the generosity of TIL who donated all the freighting costs.

Xolaris, Xheherazade, Rajiv and Nasrin Anushan

THE STORY OF HANGPOD By Nasrin and Rajiv Anushan

The Hangpod was a personal project of passion for our family. Our older daughter developed infantile esotropia and had two surgeries before the age of two. During her recovery we explored different ways to help her exercise her eyes and develop integrated coordination. One thing that seemed particularly helpful was gently swaying side to side or back and forth. Living through a wet New Zealand winter at the time of her second surgery had its own unique challenges â€” so we ultimately needed to have an indoor product. But it needed to be safe and fun for her too. We tried lots of different products, but never found one that we absolutely loved. The main problems we faced were with durability and quality. When we saw how much her little

sister and friends were enamoured with the idea of an indoor swing, we decided to explore building the best indoor product that we could. We wanted it to be something that would offer kids unfettered joy and comfort. After more than three years of prototyping and searching for a manufacturing partner, we finally struck magic. We uncompromisingly used the very best materials: a thick 240gm cotton fabric forms a cocoon around kids to create a floating cloud seat like no other. Our core desire was for this product to bring joy to kids everywhere and our product has been used and recommended by several sensory therapists. Unfortunately, in early 2020 we had to close Hangpod. However, we could not think of a better way for us to end this chapter, than to be able to bring some joy to children with Down syndrome and their families â€“ so we are donating our approximately 400 units of remaining stock to the New Zealand Down Syndrome Association to be distributed to children/families across New Zealand. Best wishes Nasrin and Rajiv Anushan.

Regional Focus

Jett Dawson a Balclutha local

OTAGO DOWN SYNDROME ASSOCIATION FLYING HIGH In this edition of our regional focus segment, President Glen Jelley from the Otago Down Syndrome Association shares what they have been up to in Highlanders country.

Isaac Murgatroyd-Mcnoe skiing

My name is Glen Jelley and I am the current president and regional representative for the Otago Down Syndrome Association. First, I would like to give you a bit of background on how the ODSA came to be. Before the current ODSA there was an Otago Down Syndrome Association that had stopped operating before we became part of the Down syndrome community, but I understand they did a lot of amazing work around the Otago area. On the 20th of August 2008 we were blessed with the birth of our beautiful daughter Jessica who has Down syndrome. We knew before she was born there was a high chance of her having Down syndrome so had done a bit of research and soon after Jessica was born joined the New Zealand Down Syndrome Association and Upside of Downs. When Jessica was around 7 months old, we were introduced to Karola and Graeme Franklyn with daughter Emily and Victoria Murgatroyd with her son Isaac. Karola, Graeme and Victoria went on to become three of the founders of the new ODSA in 2010. We joined a few years after Karola and Graeme

Bradley Whipp with his art over lockdown

Grace Moreton dressed up for her nana's 80th.

Franklyn, Victoria Murgatroyd, Jean Elmes and Karen MacDiarmid had started a social group that later formally became the Otago Down Syndrome Association. Karola was the president, Graeme the treasurer and Jean the secretary. There was a lot of work put in in the early years to get the ODSA off the ground and build the membership to where it is today at around 75 families. The ODSA covers a large area from south Otago (Balclutha) to North Otago (Oamaru) and up to Central Otago (Queenstown, WÄ naka, Alexandra). There have been some awesome social activities in the early years with Halloween parties, ten-pin bowling, outdoor parties with the Highlanders visiting as well as fire engines and lots of great memories and friendships were made. Karola was our president for around 5 years. As a professional teacher she was deeply passionate about education for our children (and all children) and spent a lot of her time researching and presenting seminars around adapting the curriculum and better learning practices for our children. There were often emails that would arrive at midnight from Karola (I swear she never slept). The ODSA are deeply indepted to the

work put in by the committee in the early years as we certainly would not be where we are now without them. If I got my years right, I joined the committee at the AGM in 2014. At that time, we were focusing on monthly social events and running three to four seminars around education a year. Around this time there were a lot of younger families and we had a lot of fun at our monthly social gatherings. As the children of the families got older the social gatherings became less as the now teenage youth moved onto likes of the UPP club, which was originally formed in Christchurch and is more focused on social and life skills. There were not a lot of younger families coming through the ranks, so the decision was made to cut back on the social gatherings to one each quarter. In 2015 Karola and Graeme made the decision to step down from the ODSA committee and I was elected president. The current committee consists of myself as president, Karl Walker as Treasurer, Jean Elmes as Secretary, Victoria Murgatroyd for Media, Lisa Gallacher for Education, Catriona McKee and Carlo Biggemann self-advocate.

Jessica Jelley at the top of Cardrona after a morning of skiing

We were lucky to get Lisa Gallacher on the committee in 2017 who is a private speech language therapist and is extremely passionate about speech/language and education for children with Down syndrome. In 2018, we ran our first “Better learning Together Conference” in Dunedin where a range of professionals presented at our first one-day conference. We would like to thank the Auckland Down Syndrome Association for having us at their conference to see how it was run to give us ideas for ours. Our conference has gone from strength to strength over the last three years with on average 50 teachers, TAs, RTLBs, parents and caregivers attending each year from all over the greater Otago region. We have a range of presenters presenting on topics such as numeracy, behaviour, sensory processing, social skills and speech and language. We are excited with the direction we are heading with the ODSA and the conference. We develop it further each year going off the feedback from the year before. This year we were extremely fortunate to have Grace Moreton, Katie Beamish and Beau Campbell who are all youths with Down syndrome as keynote speakers at our conference. It was an immensely proud moment for the parents of the youths but also the ODSA. We currently hold three to four socials per year concentrating mainly on education. We hold a social on World Down Syndrome Day, one around Christmas and one or two in between.

We have done a lot of fun things over the last 10 years, such as the Taieri Gorge train trip, Highlands motorsport park visit, Wānaka visit, Dunedin museum and much more. It’s been crazy times lately with Covid-19 and our last two social gatherings had to be cancelled. In my position as ODSA regional representative I have had a few phone calls over lockdown asking for advice around resources for education and what we are allowed to use our respite days for and such things. Generally, the families I spoke to over lockdown were coping well under the circumstances. I did have a couple of families comment that their children suffered from a bit of anxiety when it came time to go back to school. In my role as Otago regional rep I have had the opportunity over the last five years to attend the NZDSA Youth Camp in Auckland in November each year. The first year I attended as a support person and each year since I have been fortunate to take a youth from Otago to the camp. It is a great opportunity for the youth to attend these weekend camps. They are a fun weekend building confidence, new friendships and skills. I am excited for the future of the Otago Down Syndrome Association and for people with Down syndrome. We have an awesome website www.odsa.org. nz and our freephone number is 0800 682 463. Please check us out.

Down Write Brilliant

This is one of the scenic walks of Akaroa. I am walking the track around Children’s Bay heading up to the metal statue of a rhinoceros.

Here is a lovely photo of me standing in front of a statue of the French artist, Charles Meryon. I am pretending that he is doing a portrait painting of me.

HOLIDAY IN MY OWN BACKYARD By Andrew Oswin Let me tell you about my holiday in Akaroa and some background history of what I learned. I went on a great holiday over in Akaroa with my parents. We were staying at the Rose Cottage which is very near to the township. The name Akaroa means Long Harbour in Māori. The Māori settlers came to Akaroa first. During the reign of Queen Victoria the officials signed The Treaty of Waitangi on 6th February 1840 in the Bay of Islands. After the English settled during the 19th century

This is a photo of me at the Old French Cemetery reading the names of people who died in the nineteenth century.

the French came to settle here. Lots of street names are named after French people of places during the reign of King Louis Philippe the 1st. There are also some cemeteries for Catholics, Anglicans and Dissenters. I really enjoyed my holiday very much. I got to go out for dinner with some friends at La Thai Restaurant, went on some local and hill walks with my father who is my best buddy, visited the Akaroa Museum to look at some very interesting history, and enjoyed tasting local foods. I think it is important to encourage people with Down syndrome to write articles about what they have been doing during the holidays with their parents. I would like to recommend to suggest they write about somewhere they went on holiday with a little bit of the township history. I hope that this will be a good read to everyone in the Down syndrome community!

Down Write Brilliant

Joseph gets ready for kick off

JOSEPH GETS PHYSICAL

Joseph Doyle is 10 years old and loves rugby league and his team. He has had a great season playing for his club, the Tauranga Whalers. Joseph was invited to join the Whalers after meeting Sach, the chairman of the club, at his school Christmas party. Sach mentioned a rugby league day and at that gathering Georgia from the New Zealand Ferns inspired Joseph with some drills. The Whalers are happy with Joseph's participation and say we are the lucky ones. What an awesome club for Joseph. Joseph loves the weekly practice together and drills. Coach Johnny says " itâ€™s a huge achievement for Joseph to commit to a physical game like rugby league". Joseph gets to play alongside some of his favourite mates from our local kura. He feels welcome. He has a lot of fun. Joseph said: "I love mum coming to watch me

Down Write Brilliant

Joseph receives an achievement award for the team this week

play. I like rugby league and want to be good like Matua Leighton (his teacher aide from last year). Thank you, Johnny. I like Johnny." The coach himself says it is great Joseph has joined the team. “Over the season he has taught us some things and it’s been great to see he enjoys it. Hope to see him back next year.” Joseph’s team and the fantastic other teams in the competition make sure Joseph's participation includes a try. His teammate thinks mum should pay some cash for the try and Joseph suggests the ice-cream shop for the winnings. The team manager, Chloe, acknowledges that it was a big step for Joseph and the family to join the club. She says that Joseph has achieved a lot in physical game like rugby league, “which would not have been easy”. “I’d like to say a big ‘Thank You” to Joseph for teaching and making not only me but the whole team understand the meaning of patience.”

On the charge

Me and My Job

ALEC COLE IN HIS DREAM JOB By Alec Cole

Where do you work? J A Russell Ltd Electrical Warehouse Palmerston North. How long have you been there? 12 1/2 years. What do you do at work? I am a storeman. I have a whole lot of different tasks keeping the warehouse clean and tidy. I do some stock control work and restocking jobs. What is the best thing about your job? It is quite easy for me to do this job as I have been here a long time and I work every day. I have lots of workmates and I like the way customers say "Good morning Alec" and Daniel talks to me. We went to primary school together and now he is an electrician. What don’t you like about your job? Nothing. I like everything about my job. What have you learned on this job? I have learned all my tasks and to be independent and to be reliable because my workmates depend on me to do my job. What are your work colleagues like? They are nice people, they care about me, especially Big Terry. I've got cool colleagues. Sometimes they bring morning tea in for us all. How does it make you feel to have a job? It's awesome to have a proper job because I earn my money to live. I love my job and it keeps me busy every day.

Alec hard at work

Is this your dream job or do you want to do something else as well? THIS is my dream job.

President's Pen

Kim Porthouse and Linda te Kaat

COVID-19 FORCES US ALL TO MAKE MAJOR CHANGES By Kim Porthouse Greetings everyone, well hasn't 2020 turned out to be a year like no other. COVID-19 has certainly turned life as we know it upside down. I do wonder how everyone's family member is coping with all the changes. I'm pretty sure our Brendon is struggling to understand why he can't go to some of his favourite activities. He asks often to go to bowling and to the fire station where he cleans, but in level 2 neither of these are available. And whilst he enjoys the online StarJam meetings he still wants to go to an actual class each time he puts on the t-shirt, quickly putting his shoes on expecting to go out. Although he gets to go to a couple of his activities, I’m sure he gets a bit of cabin fever at times. During the first lockdown he definitely became quite grumpy and some of his obsessive behaviours became more obvious and now in

level 2, I am seeing that creep in a bit more than is usual for him. I have been thankful we don’t live in Auckland, but really feel for those of you that do! For the NZDSA it has also curbed the events we have been able to hold with many events having to be postponed. Our community is vulnerable, so we have had no choice but to put in place a policy that prohibits us from holding events in any level other than level one. I count our blessings that we are in New Zealand where the Government has managed to keep community infection at a very low level compared to many other countries. Moving away from COVID-19, I have to share some other piece of unhappy news. It is with much sadness that we have to announce the resignation of our much-loved National Administrator, Linda te Kaat. Linda has worked for the NZDSA for over 17 years. She is one of the most organised, efficient and effective administrators an organisation like ours could ever hope to have. She has carried out her job to a high standard and with a passion for our organisation that would be hard to rival. Her expertise and experience with funding applications and financial accountability has meant that the NZDSA has maintained a strong financial position that has enabled our organisation to grow and flourish to be able to achieve the things we have. Linda is the one who really organises the committee and keeps us on track. We will miss her very much, her shoes will be difficult to fill. Linda has indicated she will be leaving at the end of March 2021, by which time she expects the current major database project, which will interface with our new website, should be up and running. I would just like to express my eternal gratitude to Linda for all the guidance and support she has provided to me in the role of President, as well as for her unwavering support of the committee and the NZDSA as a whole. Linda has become a special friend over the years but feels it is time to focus more on the support her family needs and I really wish her and her family every happiness for the future, it is certainly most deserved.

Attitude Awards

ATTITUDE AND TALENT SHINE FOR POPPY STAR LIBBY HUNSDALE Libby Hunsdale, who plays the leading role in feature film Poppy, has been recognised as a finalist in the Attitude Awards. Libby is one of three Attitude Youth Courage Award finalists. This section of the annual awards celebrating the achievements of the disability community is for a young person with a disability whose courage and determination will remind Kiwis of the power of the human spirit, and the quest of young people with disabilities to lead full lives. “We know Libby embodies the spirit of this award. Her courage has been shown in her overcoming personal loss and throwing herself into auditioning for, and successfully gaining, the

role of Poppy,” says producer Robin Laing. “She not only brought her talent and courage to the set every day, she came back from the lockdown hiatus to the final week of the shoot more prepared and confident than ever.” Poppy is the story of a young woman with Down syndrome who refuses to be defined by her disability and decides to take control of her own life. Written and directed by Linda Niccol, Poppy is produced by Robin Laing and Alex Cole-Baker. It is funded by the New Zealand Film Commission’s 125 Fund set up in 2018 to celebrate 125 years of Women’s Suffrage, and supported by TVNZ, NZ On Air, IHC Foundation and generous philanthropists. Australian-based New Zealander Ari Boyland and newcomer Sebastian Hunter feature alongside Libby in this warm and brave-hearted drama filmed in Kāpiti this year. The producers plan for Poppy to hit New Zealand screens before the end of the year. The Attitude Awards winners will be announced at a televised ceremony on 2 December 2020. https://www.attitudeawards.org/2020-finalists

Attitude Awards Finalists Attitude Youth Courage Award Geena Hill Libby Hunsdale Caleb Wright Attitude Employee and Entrepreneur Award Curtis Smith Grace Stratton Independence Collective Attitude Impact Award Jennifer Del Bel Sheridan Jackson Jonathan Mosen Attitude ACC Employer Award Stopping Violence Dunedin (Cinnamon Boreham) GPSOS Ricoh New Zealand (Vicky O'Neill) Spirit of Attitude Award Lusi Faiva Katrina Matich David Winterburn Attitude Community Champion Award Jenny Hogg Thomas Tuki Timothy Young Attitude Sporting Endeavour Award Cody Everson Anna Taylor Eamon Wood Attitude Support Superstar Award To r e c o g n i s e s u p p o r t w o r k e r s , c a r e r s , occupational therapists, physiotherapists, nurses and family members who provide critical support to a person / persons with disability. The person may also have gone above and beyond when performing their role as an essential worker during the restrictions and challengers of COVID-19. This person will have an X-factor. Shelley Clark As People and Capability CoOrdinator at SdE, Shelley is usually the nominator not the nominee. She goes above and beyond for all of her staff and is the glue that held the team together during the confusing COVID-19 induced lockdown.

Elizabeth Goodwin Elizabeth is passionate about developing innovative ways to support whānau with disabled children, and working for the inclusion of disabled children at school and helping parents to codesign solutions to their challenges. Jenny Hogg Jenny makes the world a better place for all those who meet her. She’s not interested in what people can’t do, only what they’re great at and constantly uses her skills and connections in the community to help people find their dream. Whether it’s employment, choice, or finding a purpose, Jenny lives and breathes Disability.

Downlights Breaks All Barriers Jennifer Del Bel and the Downlights company has also been among the awards recently. Downlights is extremely proud to win the Breaking Barriers award at the annual NZ Diversity Awards. Jennifer and Downlights have been a wonderful supporter of the NZDSA, and have also been named as a finalist in the Attitude Awards in the Impact Award category. Jennifer is the Founder and Managing Director of Downlights, a New Zealand social enterprise that employs young Kiwis with disabilities. J e n n i fe r wa s r u n n i n g a s u cce ss f u l artisan candle company (Illumina), but has pivoted the company and now employs seven school leavers with Down syndrome, and other learning or intellectual disabilities. Even though Jennifer does not have a disability herself, nor within her immediate family, she is considered by many as a strong ally of the disability community. This is demonstrated by the relationships she has with her employees, their families, and also the wider disability sector, including the NZDSA.

Health

HOW SPEC-TACULAR

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Did you know a research unit exists to study visual development in children with Down syndrome? • Since 1992 a special research team at Cardiff University has been working with 100 volunteer families to create the Down syndrome Vision Research Unit. These are some of their key findings: Babies with Down syndrome have vision like other babies. Children with Down syndrome are not born with abnormal eyes. The refractive errors (long and short sight) are exactly the same among infants with Down syndrome as among typical children. But, whereas ordinary children grow out of any errors very quickly in the first two to three years of life (a process known as emmetropisation), children with Down syndrome do not. •

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Children with Down syndrome tend to keep their infant defects instead of outgrowing them, or even to become more long or short sighted as they grow. Children with Down syndrome are much more likely to need glasses than other children. Children and adults with Down

syndrome are much more likely to have eye defects than members of the general population. The defects include the long or short sight that many of us experience and for which we wear spectacles. But whereas only about 5-8% of ordinary children of primary school age need spectacles, approximately 60% of children with Down syndrome need them. Other defects are more common too, such as squint (eye-turn), poor focusing and reduced detail vision.

During close-up work children with Down syndrome usually focus past the right point unless they wear bifocals. • Many children with Down syndrome do not focus accurately on objects near to them. This means that near tasks, including books and pictures in school, are out of focus and blurred. • This poor focusing seems to be present even at the earliest age at which the unit sees the children, around 3 months of age. • They find that over 70% of the children focus poorly. • Focusing improves dramatically with bifocal spectacles. • Even with glasses children with Down syndrome do not see as much detail as other children. • Children with Down syndrome do not reach the same level of detail vision

(visual acuity) as do ordinary children of the same age. The difference is two or three lines on a conventional sight chart, whether measured by children reading the chart or by brain wave activity. T h i s m e a n s t h a t s c h o o l re a d i n g materials don’t look the same to a child with Down syndrome as to the rest of the class. Enlarging the material may help, but it will still not look normal to the child.

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couple of days.

First week (or so) • •

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Getting used to glasses Getting your pre-schooler's eyes tested is hard enough. But when you do go home with a small pair of glasses, how do you get your child used to wearing them? Here are some suggestions you may find useful. There are two aims when getting your preschooler used to glasses. • I now wear glasses (for however long) • Mum or Dad takes my glasses off. If I take them off, they will ALWAYS go back on.

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Next few weeks •

First few days •

Have some treats or rewards ready that your child particularly enjoys and does not get often. Put her glasses on, then take them straight off again. Don’t wait for her to get worried about the change in her vision. Do this five or six times a day, for a

•

Wealth of information at your disposal The NZDSA team has been working hard over the past few months to dig into 40 years of history and experience from our families to share our learnings. We have delved into our archives and old editions of CHAT 21 to find historical information and brochures that are still just as relevant as when they were written five or 20 years ago. The NZDSA is now in the process of updating, editing and redesigning these resources for our members in 2020. The resources cover a wide variety of issues,

Put the glasses on and leave them on for a few seconds only. While doing this be happy and full of praise. Raise your hands in the air, sing, dance etc! Gradually increase the amount of time the glasses stay on - in increments of ten seconds only in the beginning. Initially, you do not want your child to touch the glasses while they are wearing them so you will need to be almost holding their hands down while helping them to do something they really enjoy. Once you can leave her arms free for a few seconds, let her play but as soon as you think she is going to pull off her glasses, either hold her hands or you take the glasses off.

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Once your child is wearing the glasses for longer periods there will still be times when she will pull them off herself. You need to ensure that you put them back on straight away with a specific phrase - e.g. “glasses stay on”. You want to ensure a situation where your child learns that glasses do come off at times, but will only stay off if it is Mum of Dad who takes them off.

like glasses, coeliac, living independently, ante-natal testing, visiting the doctor, behavioural issues, nutrition, mental health and many other subjects that are relevant to our families. In the coming weeks, we will start uploading these resources onto or upgraded website www.nzdsa.org.nz , so please make sure you are registered for a free NZDSA membership so you can download these resources, along with any CHAT 21 copies, and get access to all the other information on our website. We will continue to expand and build this invaluable resource as we gather more information from around New Zealand and around the world.

Pen Pals

Tammy gets lots of mail

PEN PALS IDEA BECOMES GLOBAL SUCCESS STORY The COVID-19 pandemic has caused havoc around the world but has also created some great new ideas and initiatives. One of these initiatives is the Down syndrome Pen Pals programme which started in WinstonSalem in North Carolina, and in a few months has included families across every corner of the United States and 11 other countries. Programme lead Jay Callahan is now inviting New Zealand people with Down syndrome who want to meet new people and enjoy writing to join the 350 other participants who have already joined up. “In late March, the Down Syndrome Association of Greater Winston-Salem wanted its members with Down syndrome and their families to meet new friends with Down syndrome, while they were stuck at home during COVID-19 quarantine,” explains Jay who is Executive Director of the Down Syndrome Association of Greater WinstonSalem.

Caitlyn Chambers

“We reached out to the Omaha, Nebraska Down Syndrome Alliance of the Midlands to see if they had members who might want to partner up with the Winston-Salem organisation as pen pals and the Down Syndrome Pen Pal Program was born.” Callahan is blown away by the success of this very simple idea that has captured the imagination around the world. “The pen pal members range in ages from 16 months to 62-years-old and come from all different backgrounds." “The program is growing daily and many of the members are on their third or fourth letter to their new pen pal.” Jay says it is really easy to become a pen pal by just emailing your name, age and address to jay@ dsagws.org. From there Jay puts you in touch with others. The birthdays have become a real focal point for the group as Jay coordinates members who like to receive or send birthday cards so some members have their mailbox full with birthday cards from around the world. If you want to find out more, you can check out their Facebook page https://www.facebook.com/ groups/dspenpalprogram/ “During these times, we believe that this program is a great example of good that has come out of COVID-19,” says Jay.

Polar Bears Rugby

POLAR BEARS TAKE THE FIELD IN CHRISTCHURCH Several players with Down syndrome recently featured in New Zealand’s first fully disabled rugby team in Christchurch. The team is called Polar Bears and is part of High Schools Old Boys’ and an international organisation called Tri Trust Rugby. The team has 20 players with intellectual and/ or physical disabilities and are aged between 12 and 40. After months of training, the players were buzzing to take the field, along with ‘enablers’ who helped facilitate the game to get everyone involved. The team’s ultimate goal is to have other teams to play against domestically, and one day internationally.

The team in action

Champion Centre Column

RETIREMENT MAKES TIME FOR RESEARCHâ€Ś Champion Centre director Susan Foster-Cohen is a familiar face to many families in the Down syndrome community as they have passed through the Christchurch-based early intervention centre. Susan has been a regular contributor to CHAT 21 and in her final piece she reflects on her 17 years before embarking on a new adventure.

It has been my pleasure over almost 17 years as Director of The Champion Centre to facilitate and contribute to research in support of children and families. And while I have now stepped away from the role of Director, I am continuing my research on language and communication development through the University of Canterbury. Now is therefore a good time to reflect on the role the Champion Centre has played, and continues to play, in research that supports children with Down syndrome and their families/whānau. The Champion Centre has a well-deserved reputation for its services to infants and young children with Down syndrome and their families spanning more than 40 years. A hallmark of that reputation has, from the start, been the role that both the production and consumption of up-to-date research on how best to support children’s development has played at the Centre. Although the Centre now serves children with a wide range of challenges to their development, it was Dr Patricia Champion’s doctoral research on engaging parents of children with Down

syndrome as partners in early intervention that was the foundation of the Centre’s model of early intervention services. Champion Centre-based research aimed at understanding the development of children with Down syndrome and how best to support each child has continued ever since those early days. Highlights include the doctoral work of Dr Christine Rietveld exploring the transition from preschool to school; the masters work of Clare Tatterson on children’s problem solving abilities; the masters and doctoral work of Dr Anne van Bysterveldt on the emerging literacy skills of children with Down syndrome; and my own work on the role of sign in building early vocabularies, on the importance of developing communication skills to support the emergence of language, and on parent perceptions of children’s successes, challenges and quality of life. Much of this work has appeared in refereed journals and a full list of Champion Research https://www.championcentre.org.nz/championresearch.html can be found on our website. The Centre has also developed more practical supports, including two DVDs produced in collaboration with, and available through the NZDSA, one on sharing books with children and one on the value of routines. We also produced an article by Julie Wylie on the role of musical play for Down Syndrome News and Update, and a booklet for teachers on helping children reach their full potential in early childhood and primary school which is freely available through the Champion Centre website. Beyond our own resources, we have also kept up with practical advice from trusted colleagues such as Down Syndrome International which has just published International Guidelines for the Education of Learners with Down Syndrome. https://www.championcentre.org.nz/resourcesfor-professionals.html. A true focus on research to practice has been a hallmark of the Champion Centre model of early intervention services and will continue to be so as the Centre moves into its next phase of leadership. Susan Foster-Cohen, PhD Adjunct Associate Professor, University of Canterbury

Special Olympics

Thames Valley Special Olympics athletes enjoying their Fun First day in June 2020

KEEPING OUR ATHLETES SAFE 30

At the start of March, Special Olympics New Zealand (SONZ) was gearing up for the yearâ€™s much anticipated competition season. However, the COVID-19 crisis and resulting lockdown forced a halt to SONZ activity, leading to immense challenges for our athletes as their routines were disrupted and their connections to teammates restricted. For many athletes SONZ is a large and important part of their life. Athletes work to improve their physical health and gain important benefits to their self-esteem and confidence. Additionally, the social connections athletes foster through SONZ is huge. Athletes become very close to their fellow teammates and coaches, often socializing outside of their sports and forming lifelong friendships. Therefore, it was a big shock to the system when New Zealand went into lockdown and SONZ had to cease all activity. For our athletes this meant no training, no events and no seeing their teammates or coaches, which caused anxiety and stress. During this time, we worked to mitigate the stress

Waitakere Special Olympics athletes happy to be back to ten-pin bowling training in June 2020

Contactless Thermometer use demonstrated at SONZ training

of isolation as much as possible by talking to our athletes regularly online and providing resources on staying fit, healthy and connected to friends. SONZ organisers and coaches stayed in touch with athletes through Facebook live events and through organising team Zoom calls. Exercise videos and tips on staying active were also promoted to our athletes. Additionally, athlete and health leaders, such as James Wilson and Scot Jackson, created positive content on staying healthy and keeping a strong mind, to keep everyoneâ€™s spirits up. When New Zealand returned to level 1 in June, we all relaxed as training started up again and our athletes began getting excited once again for the oncoming competitions in September. This made it particularly difficult for our athletes when we halted all activity again on the countryâ€™s move to level 2 and 3 in August, even as other sports resumed across New Zealand. Our athletes are part of a vulnerable community, where due to a host of reasons related to being medically underserved, people with intellectual disabilities suffer disproportionately

from preventable disease, chronic pain and autoimmune issues. Our goal is to protect our athletes as much as possible, which for us means no training or events unless there is no significant risk of COVID-19 community transmission within the region. A s we co n t i n u e to m o n i to r G ove r n m e n t recommendations and adjust our response accordingly, we have implemented hygiene and safety protocols for clubs who wish to return to training at Alert Level 2. This includes requiring coaches and volunteers to wear a face mask where possible, contact tracing, the use of contactless thermometers and hand hygiene protocols. Our full Alert Level protocols can be found at specialolympics.org.nz. Many of our athletes are highly goal-oriented, and the postponement of many of our competitions is leaving many feeling adrift and uncertain. As the situation continues to change and evolve we will continue to adapt in order to ensure that as many of our athletes as possible are able to train and attend events safely.

IHC Library IHC library is full of good resources to help with anxiety. Here are just a few.

Something bad happened: a kid's guide to coping with events in the news. By Dawn Huebner Summary: "[This book] guides children ages 6 to 12 and the adults who care for them through tough conversations about serious world events, from environmental threats to human tragedies. Care is taken to use the non-specific "bad thing" throughout, helping parents retain control over which events to talk about, and how much information to provide. Written by child psychologist Dr Dawn Huebner "Something Bad Happened" normalizes fear, sadness and worry about "bad things" while teaching coping skills to help children preserve feelings of safety, optimism and strength." BOOK JACKET

All birds have anxiety. By Kathy Hoopmann Summary: "Life as a bird can be stressful! From worrying about airplanes, windows and getting enough worms to eat, it is clear that birds can be anxious beings. Through a humorous, quizzical depiction of bird behaviour, this book validates everyday experiences of anxiety, provides an understanding of the associated symptoms and offers compassionate coping strategies." - BOOK JACKET

When my worries get too big: A Relaxation Book for Children Who Live with Anxiety. By Kari Dunn Buron Worry and anxiety are on an upswing. In fact, anxiety is the most frequent of all mental disorders in children. High levels of stress and big emotions related to social situations, sensory issues, or general frustration are common in children who live with anxiety. Such stress can lead to a loss of

control, resulting in aggressive behaviour, such as screaming, throwing things or even hurting someone. Prolonged anxiety can also seriously impact success in academic achievement and cause children to avoid social and extracurricular activities. Now with a special section on evidence-based teaching activities for parents and teachers alike, this bestselling childrenâ€™s classic just became even better and more relevant. Engaging and easy to read, this illustrated children's book is filled with opportunities for children to participate in developing their own self-calming strategies. Children who use the simple strategies in this charming book, illustrated by the author, will find themselves relaxed and ready to focus on work or play!

Can I tell you about anxiety? : a guide for friends, family and professionals. By Lucy Willetts Summary: "Meet Megan - a young girl who has an a n x i e t y d i s o rd e r. M e g a n invites readers to learn about anxiety from her perspective, helping them to understand why she sometimes feels anxious and how this affects how she thinks and behaves. Megan talks about techniques she has learnt to help manage her anxiety, and how people around her can help. With illustrations throughout, this will be an ideal way to explore feelings about anxiety, and how people around her can help. It shows family, friends and teachers how they can support someone who experiences anxiety and will be an excellent way to start a conversation about anxious thoughts, in the classroom or at home. Suitable for readers aged 7 upwards." BOOK JACKET This book is a great introduction to anxiety for any age. It describes anxiety, itâ€™s effects and what you can do about it in a friendly, non-scary way. Please contact the library team (Phil, Ros, Ann and Michael) on 0800 442 442, email them at librarian@ihc.org.nz or visit the online catalogue at https://ihc.mykoha.co.nz/ You can watch their library video at https://www.youtube.com/ watch?v=AunmBYTIZTM

NZDSA Notices

ZOOM into the NZDSA AGM

Date: 30 October 2020 Time: 5:00pm-6:30pm Due to changing COVID-19 Levels around the country, not everyone may be able to attend the NZDSA Annual General Meeting on October 30. We want every person in our community to be able to take part. If you want to join, we have shared a link on our Facebook page, the link will be shared again on the 30th of October and will also be available on our website under the news section.

Rose Award

Thanks

The Rose Award provides the opportunity to thank individuals or organisations who either support individuals with Down syndrome or the Down syndrome community. Please email Linda at nzdsai@xtra.co.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”. We 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.

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

Numicon kits Yes, now is the time to start thinking about whether you would be interested in loaning the NZDSA Numicon kits for 2021. Numicon is a multi-sensory, structured maths programme. If you would like to know more about Numicon, the website is numicon.co.nz/

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

Joyce Fisher Charitable Trust NZ Lottery Grants Board Holdsworth Charitable Trust Thomas George Macarthy Trust Pub Charity Southern Stars Downlights NZ Enable NZ - Mana Whaikaha COGS Christchurch COGS Hamilton COGS Manukau COGS Manawatū/Horowhēnua COGS Otago COGS Whangārei COGS North Shore COGS Wellington COGS Southland Page Charitable Trust

If you would like to loan a kit please contact Linda te Kaat for more information at nzdsai@xtra.co.nz or on 0800 693 725 press 2.

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

NZDSA Committee

Contact Directory Kim Porthouse

Bev Smith

Diane Burnett

President Wellington & Wairarapa 021 297 0298 president@nzdsa.org.nz

Zone 1 Representative Northland 0800 693 724 press 3 northland@nzdsa.org.nz

Zone 1 Representative Auckland 0800 693 724 press 3 auckland@nzdsa.org.nz

Zone 3 Representative Whanganui, ManawatĹŤ, Gisborne & Hawkes Bay 0800 693 724 press 3 zone3@nzdsa.org.nz

Bridie Allen

Gwen Matchitt Vice President Zone 2 Representative Waikato, BOP & Taranaki 0800 693 724 press 3 zone2@nzdsa.org.nz

Angelique van der Velden

Zone 6 Representative All areas below Ashburton 0800 693 724 press 3 zone6@nzdsa.org.nz

Shelley Waters

Zandra Vaccarino

Linda te Kaat

Coen Lammers

National Executive Officer 0800 693 724 ext. 1 neo@nzdsa.org.nz

National Administrator 0800 693 724 ext. 2 nzdsai@xtra.co.nz

CHAT 21 Editor 027 730 239 editor@nzdsa.org.nz

NZDSA Staff

Zone 5 Representative Ashburton & all areas above 0800 693 724 press 2 zone5@nzdsa.org.nz

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

Regional Liaison Officers

Averill Glew

Auckland Community Liaison Officer 0800 693 724 press 3 clo@adsa.org.nz

Jess Waters Social Media and Information Officer 021 032 8539 hello@nzdsa.org.nz

Treasurer treasurer@nzdsa.org.nz

New Zealand Down Syndrome Association PO Box 4142, Shortland Street Auckland, 1140 0800 693 724

Donna Higgs-Herrick

Sandra Slattery

Canterbury Community Liaison Officer 0800 693 724 press 3 cdsainc@gmail.com

Taranaki Community Liaison Officer 0800 693 724 press 3 taranakidownsyndrome@gmail.com

NZDSA Membership Membership is now done online. For all details please go to www.nzdsa.org.nz or for any queries please ring 0800 693 724 ext. 2. If you have not received an email to update your membership online please call the number above.

Donations The NZDSA receives no Government funding and relies solely on donations and grant applications to keep us running. If you can make a donation big or small, please go to www.nzdsa.org.nz or ring 0800 693 724 ext. 2.

Zone 4 Representative Wellington & Wairarapa 0800 693 724 press 3 zone4@nzdsa.org.nz

Our people

Luka and Angelique van der Velden (right) The Robson family (centre left)

Bella and Coen Lammers (centre right) Matai Kerr, 8 with his sister Mia (right)

Me and my pet

Dain Whiting helping out with the pet lambs (right) Martin Cropp is 8 years old and his dog's name is Chiquita (centre left)

Our son Maverick Stewart, (14 months) bonding with our family dog, Tank (centre right) Keegan Rutherford (16) of Lyttelton with Gypsy (right)