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CHAT 21

Issue 75 Spring 2018

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

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

Our faces, our people. The Unforgetaball The Unforgettaball was a â€˜night to rememberâ€™. It was held at the Hornby Working Menâ€™s Club on Saturday 15th September. There were so many decorations, chandeliers and a sparkling disco ball. The music was really good. Everyone had a memorable time dancing and showing off their different styles of dance movements. We had a live DJ and a band which played some of the greatest musical hits from artists of around the world. It was the first time that Seven Sharp filmed live coverage of the Unforgettaball. A lot of people turned up at this event. The Unforgettaball is about networking getting families and friends of people with Down syndrome to get together, to have fun, and have a ball. I would like to thank Linda te Kaat and Tania Grose for all that they have done for their service to the Down syndrome community. By Andrew Oswin

Contents

From the Editor

What’s in a name?

Under Attack. Is the Down Syndrome Community under threat?

I wish I had Down syndrome

The Shortland Street Controversy

Living with Down syndrome

Why we decided to have a baby with Down syndrome

President's pen

Down Write Brilliant

Support to make decisions

World Congress inspires global Down syndrome community

Congress celebrates success of people with Down syndrome

Congress provides inspiring learnings but no magic pill

Becky Donovan wins 2018 IHC Art Awards

Charlize’s love for art earns plaudits and hard cash

Learn, lead and inspire at 2018 Inclusion International Congress

Feedback on the Inclusion International Congress

What’s new in the IHC Library?

NZDSA notices

NZDSA resources

Contact directory

The Recreate Ball

The Spring edition of CHAT 21 attempts to tackle one of the biggest issues facing the global Down syndrome community: prenatal screening and fast declining numbers of babies with Down syndrome. We looked at the international developments and spoke to the Clinical Director of the National Screening Unit and the NZDSA spokesperson about the trends and immediate developments in New Zealand. We hope this article can start a debate in our community around this difficult subject and that our readers will share some of their own experiences. On a lighter note, we celebrate the very talented winners of the IHC Art Awards and look back at the ball season, with plenty of great images from the Auckland and Christchurch balls. The past few months, several New Zealand representatives visited the World DS Congress as well as the Inclusion International Congress and many of them have taken time to report back to our readers. Please make sure you read the story by Carlos Biggeman who was a speaker at the WDSC, as well as the adventures of Andrew Oswin in Europe and the successful mud run by Kathryn Lyons in Hawkes Bay. Thanks to everyone for their contributions and please keep sharing your stories. Coen Lammers

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.

What’s in a name? By Zandra Vaccarino, National Executive Officer, NZDSA.

Kia ora Words have power and we all react to certain words in a particular way and some words have power to empower and others to discriminate and sometimes they offend, even if it wasn’t the intent. I am uncomfortable with the term intellectual disability but it is a widely used term. I know that members of People First have advocated to use learning disability but I personally prefer to use learning differences. I wish that all of society recognised, accepted and celebrated diversity and difference and acknowledged that we may all need different levels of support and adaptations instead of needing to use labels to describe people. Unfortunately, we have not reached that stage, so at times we are forced to use certain language so that individuals can access the support or services they need to participate and shape the life they want to lead. I think it is universally accepted that we use People First language – a person with Down syndrome not a Down syndrome person. However, the term disabled people does seem divisive and it can seem inconsistent with People First language, so it is with reluctance that I use this term because people may misunderstand. However, it is the language used in official New Zealand documents, cabinet papers and the New Zealand Disability Strategy. It is a term that I will need to use when discussing System Transformation in the Mid Central region. Therefore, I thought it would be good to explain that the term disabled people is located in the social model of disability which locates disability in society, it is the disabling barriers society puts in

CHAT 21 | Issue 75, Spring 2018

place versus the medical model of disability which locates disability within the person. The New Zealand Disability Strategy describes disabled people as people who have long-term physical, mental, intellectual or sensory impairments w h i c h i n i n te ra c t i o n with various barriers may hinder their full and effective participation in society on an equal basis with others. I am very short-sighted which isn’t a problem as I wear contact lenses but if I didn’t and I was not able to access lenses, then societal issues would disable me. We c o u l d a l l l i s t examples of barriers in our community that are disabling and as a result create an environment that disables people, hence the term disabled people or a disabled person.

System Transformation

The System Transformation prototype of the new disability support system rolled on October 1 in the MidCentral region. I am fortunate to live in this region and I am looking forward to the empowering changes this transformation will bring for disabled people and their family and whānau. However, I am aware that change always brings uncertainty and soon misconceptions arise and then myths soon start circulating. One myth I recently heard is that carer support is going to be taken away. I realise that hearing this would cause lots of stress to our members, if it was a fact. Yes, there is a change coming, but it is a positive change. The Ministry is replacing Carer Support with a more flexible type of respite support called

I Choose. I Choose (also known as a ‘flexible respite budget’) will make it easier for you to have a break from your caring responsibilities. I Choose will mean that instead of filling in those dreaded blue claim forms, what will happen is that once or twice a year you will receive a cash payment into a designated bank account that you set up. You will be able to use the money that you are paid into your bank account to buy any respite support or service that you want, as long as it gives you a break from your caring role. There are new purchasing guidelines for I Choose - the intent is to make it easier for you to use the money to have a break. I Choose is not ready yet but your Needs Assessment and Service Coordination organisation (NASC) will let you know all about the changes at your next review or reassessment. To read more about the changes see: https://www.health.govt.nz/your-health/servicesand-support/disability-services/types-disabilitysupport/respite/i-choose A few people have asked me to explain what the System Transformation in the Mid Central region will look like and some may be frustrated when I explain that we are all still in the process of creating the prototype and that it will allow disabled people and their families to shape what they want. I see this as an exciting time as we are working together to bring about transformational change. The process is different, it is complex, it is messy, and it will take time; but in the Mid Central region and nationally, we (disabled people and their family and whānau) have the unique opportunity to be part of shaping the prototype. The co-design team, the national and regional leadership group and the MidCentral governance group and disabled people and their families and whānau have used, and will continue to use, the Enabling Good Lives principles to guide the change process. The Enabling Good Principles are: Self-determination Disabled people are in control of their lives. Beginning early Invest early in families and whānau to support them; to be aspirational for their disabled child; to build community and natural supports; and to support disabled children to become independent, rather than waiting for a crisis before support is available.

Person-centred Disabled people have supports that are tailored to their individual needs and goals, and that take a whole life approach rather than being split across programmes. Ordinary life outcomes Disabled people are supported to live an everyday life in everyday places; and are regarded as citizens with opportunities for learning, employment, having a home and family, and social participation - like others at similar stages of life. Mainstream first Disabled people are supported to access mainstream services before specialist disability services. Mana enhancing The abilities and contributions of disabled people and their families are recognised and respected. Easy to use Disabled people have supports that are simple to use and flexible. Relationship building Supports build and strengthen relationships between disabled people, their whānau and community. Returning to my opening remarks that if words have power then I think the most recent example of discrimination against people with Down syndrome was the storyline featured in Shortland Street. This storyline generated a justified outcry but in reality it is just one example of the types of discriminatory practices that expectant parents tell us they experience. The anecdotal stories we hear suggest that discrimination is pervasive throughout the screening process. This situation is of great concern to the NZDSA and to advocate more effectively we need to collate more stories from our members about both their positive and negative experiences of antenatal screening. If you are willing to share your story or thoughts please contact me neo@nzdsa.org.nz I have not done my regular update of events for this quarter, but in this edition of CHAT 21 you can read about my inspiring experiences at the Inclusion International Congress and the World Down Syndrome Congress. Hei konei rā Zandra

What's in a name?

Under Att

Is the Down syndrome commun New Zealand is on the cusp of introducing more advanced antenatal testing for Down syndrome. COEN LAMMERS investigates if the Down syndrome community should feel under attack and looks at the ethical, medical and social issues at the heart of this debate.

Antenatal screening for Down syndrome and other genetic disorders has long been a contentious issue in New Zealand and abroad. The introduction of more sophisticated and conclusive testing methods has increased termination rates and triggered a global debate around screening ethics, the value of a life with a disability and statesponsored elimination of Down syndrome. In some European countries, babies with Down syndrome have become a rarity. Iceland has reportedly reached a 100% termination rate, closely followed by Denmark where in 2017 only four new babies were born with Down syndrome. Whether you agree with the abortion policies in those countries or not, the undeniable fact is that in many countries young people with Down syndrome will soon become an uncommon sight, or worse, an unwanted anomaly.

CHAT 21 | Issue 75, Spring 2018

tack

tests and subsequent abortions in the UK, increasing from 482 in 2010 to 706 in 2016. This year the National Health Service in the UK is rolling out the Non-Invasive Prenatal Testing (NIPT) which gives women a near conclusive result on whether their baby will have Down syndrome. Some critics in the UK have argued against the introduction of the test, fearing Icelandic statistics. The NIPT test is not yet widely available in New Zealand and Dr Jane O’Hallahan, Clinical Director of the National Screening Unit, says that a slower uptake can in this instance give New Zealand an advantage and the opportunity to have a debate on how to introduce the test in a responsible manner. “We need to tread very carefully around the ethics and the management of introducing this test in New Zealand,” says Dr O’Hallahan. The NIPT is already privately available in New Zealand A striking example of the growing sentiment that but Dr O’Hallahan says that the Ministry of Health is Down syndrome is a burden that some societies likely to make the test available, initially for women can do without, was highlighted last year in the with a higher chance of having a baby with Down Netherlands where some media commentators syndrome or other genetic disorders. debated whether Dutch women had a moral duty to Dr O’Hallahan understands why the overseas abort their babies with Down syndrome. statistics cause concern in the New Zealand Down Their comments were based on a list published by syndrome community and is adamant that the the Dutch Ministry of Health of the most expensive Ministry of Health does not share the views of their diseases and conditions which rated Down syndrome European counterparts. as the most expensive condition to the tax payer. “There is no agenda to terminate lives with Down This list and the articles were widely discredited, syndrome.” challenged and condemned as biased because it Unfortunately, the Ministry of Health does not keep conveniently ignored major health areas like cancer. any records on positive tests for Down syndrome This discussion triggered one and terminations. Dutch physician to tweet that Dr O’Hallahan says that roughly “We haven’t come this close to the same number of children Nazi before,” referring to the with Down syndrome have systematic extermination of been born in New Zealand in disabled people in Nazi Germany. recent years and from that This quote may sound dramatic, she concludes that improved but the overseas trends and testing has not triggered a rise policies in some of these soDr Jane O’Hallahan, in terminations. called enlightened and modern The National Screening Unit has societies have caused strong concerns in the global created a working group of stakeholders to look at Down syndrome community about the value their ways of improving informed choice for all ethnicities. own society puts on a life with Down syndrome. This working group includes the New Zealand Down Unfortunately, as they are introducing more effective Syndrome Association's National Executive Zandra screening programmes, most countries have not had Vaccarino and national committee member Kim a wide public discussion around this sensitive issue. Porthouse. Statistics from the United Kingdom show that the Dr O’Hallahan says these stakeholders are providing termination rate of women who have had a positive valuable insights, beyond the medical discussions. screening test, has not changed over the past few Mrs Porthouse says that the NZDSA wants the medical decades and remains around a staggering 90%. sector to understand that the screening debate is a What has changed with the introduction of more social issue, not just a medical issue. “And the social sophisticated tests, is the actual number of positive implications need to be part of these discussions.”

nity under threat?

“There is no agenda to terminate lives with Down syndrome.”

Under Attack. Is the Down syndrome community under threat?

She has an interesting perspective as a midwife and a If they undertake the screening and it detects a mother of a son with Down syndrome and feels that higher risk or chance of Down syndrome, the families there are two specific issues at stake in the screening are forced to make quick, big decisions. discussions. They need to make a call on having an amniocentesis, In her view, pregnant women firstly need to be better which carries a small risk of losing the baby, or in informed before they decide to have any tests at some centres they may be offered the NIPT test, all, and if they receive a positive which is expensive. They also test, the women need to get more need to consider what impact a balanced information about Down baby with Down syndrome may syndrome. have on their lives. Mrs Porthouse says that most If the additional more-conclusive wo m e n t h i n k t h e t e s t s a re testing indicates the baby has standard and don’t really consider Down syndrome, the medical the impact the results can have provider will explain what Down Kim Porthouse and the sudden life-changing syndrome is, but in most cases decisions they may be facing. this talk will merely feature a long “People think they are just going to take a picture list of medical conditions the child may or may not when they get their first scan,” says Mrs Porthouse develop during their lives. who feels that pregnant women should be better “The doctors will cover themselves for everything, informed that the reason for the 12-week scan is even if there is just a minimal chance the child will for an NT (Nuchal Translucency) scan as part of the ever have those issues,” says Mrs Porthouse. MSS1 (Maternal Serum Screening) (see sidebar on Mrs Porthouse says women are not being counselled next page) screen. on the wider social issue and positive impact a child The Ministry of Health has produced a brochure on with Down syndrome could have on their lives and Screening for Down syndrome, which clearly spells community. out the options and the choices women have, but “These families need to get the chance to talk to Mrs Porthouse doubts if the brochure is used widely parents who have children with Down syndrome or at present. other people who have faced the same decision.” “Women should be offered the option to take this Instead, she is aware of anecdotal evidence that away to read through before deciding to screen, women often feel pressured to terminate their but often due to timing, most decide at the initial pregnancy. booking appointment.” “It is a very emotional time for the families and it is hard to think clearly, so if you are only presented with a long list of all the things that can go wrong with your child, it is not hard to see that people opt for termination. “In many cases, it can be a decision they regret,” says Mrs Porthouse who personally knows of parents who after termination have struggled with their decision. “In some cases, the people get to know more about Down syndrome or get to know someone and they find out it was not at all what the doctors had made them believe. For some it has been devastating.” Dr Jane O’Hallahan is aware of cases in which women feel pressured to terminate their pregnancy. “But we don’t know how widespread this is, but there should be no pressure.” The Clinical Director of the National Screening Unit says that the Ministry of Health is aware of the issues and is continuously improving information going to women. “However the introduction of NIPT in the future will require an overhaul of the informed choice process to enable women to make the right decision for them and their families,” says Dr O’Hallahan, who Dr Jane O’Hallahan admits that her colleagues often portray a future with Down syndrome in a negative light.

“In many cases, it can be a decision they regret”

CHAT 21 | Issue 75, Spring 2018

Antenatal screening What are all the tests and what do they mean NT scan:

Kim Porthouse

Dr O’Hallahan says that the information provided is “over-medicalised” and is not a social discussion. “It does not consider the value of people with Down syndrome or the fact that these people add value to so many lives of others.” As an example, the Director mentions her own daughter who had the privilege of following a family with a newborn with Down syndrome during her medical studies - a lovely experience that would benefit all medical students. Dr O’Hallahan says that the feedback from the NZDSA and other stakeholders on the working group had been valuable to show the social side of Down syndrome and that the National Screening Unit is more focused on counselling and providing better education for medical professionals and medical students about Down syndrome. “We are currently putting a lot of effort into giving more holistic information to give a real picture of what life with Down syndrome is like. We are investing to give women the right information, so they can make the right decision for them and their family.”

CHAT 21 is aware that many of our readers will have their own views and experiences around antenatal screening that they may want to share with our readers, so please email us on editor@nzdsa.org.nz

Under Attack. Is the Down syndrome community under threat?

Nuchal Translucency ultrasound scan performed around 12 weeks (range 11 weeks to 13 weeks, 6 days). It measures the fluid in the nuchal space at the back of the foetal neck. The old test used to combine just the scan with maternal age to give a risk of Down syndrome. Risk results are no longer provided on NT scan alone as they are less accurate compared to MSS1 or MSS2 screens. The NT scan is now only used in conjunction with the MSS1 calculation.

MSS1 screen:

Maternal Serum Screening (combined blood test - 2 markers - and NT scan) performed in the first trimester of pregnancy until 13 weeks 6 days gestation. Current government funded screen, offered to all women who engage with antenatal care in the first trimester.

MSS2 screen:

Maternal Serum Screening (4 marker blood test, no scan) performed between 14 weeks to 20 weeks gestation. Accuracy levels are said to be about the same as MSS1 screen, offered to all women who engaged with services too late for MSS1 screening or those who prefer not to have ultrasound scans of their pregnancy. Government funded.

NIPT (or NIPS) test:

Non-Invasive Prenatal Screening. Blood test only (new blood test which is different to MSS1), is said to be 99+% accurate. Currently not government funded in New Zealand and expensive.

Amniocentesis:

A diagnostic test in which a needle under ultrasound guidance is used to draw fluid from around the foetus. This fluid contains foetal cells which are used to look at chromosomes to see if Trisomy 21 (Down Syndrome) exists. Carries a risk of miscarriage of 0.5 to 1.0% (1:100 - 1:200).

I wish I had Down syndrome

Jess Waters with her sister Rochelle.

Jess Waters from West Melton in Canterbury provides a very personal reflection on growing up with a sister with Down syndrome and the recent controversy around Shortland Street’s depiction of the disability.

CHAT 21 | Issue 75, Spring 2018

When I was growing up, I always wished I had Down syndrome. As a sister of a young adult with Down syndrome, it has been extremely frustrating to hear of Shortland Street’s ignorant and insensitive storyline around Down syndrome in recent weeks. Their portrayal of the disability could not have been more wrong. My sister Rochelle and myself are very close in age and I have seen first-hand just how great her life is. She brings joy everywhere she goes and people love her. She gets all the attention and is offered amazing opportunities, which is why I often wished that I had Down syndrome myself. More importantly, my sister brings positivity to negative situations and doesn’t judge people. Rochelle has got it good. She works part time in a bakery, she is learning to become a dance teacher, she is part of a mixed ability dance group, she is the chairperson of the Special Olympics Athletes committee, where she also trains as a swimmer, and she is on the Canterbury Down Syndrome Association Committee. She is very much like anyone else her age, has a boyfriend, loves spending time with her friends and watching movies, she can cook and clean, loves to

have the odd beer and she enjoys travelling around New Zealand to catch up with the family. Rochelle is very independent, catches the bus by herself, has flown on her own on occasions and likes to make her own decisions. At 23, she's achieved probably more in her life than any other 23-year-old I know. I very often remark how people with Down Syndrome are geniuses because they have people wrapped around their little finger. Take school for example where Rochelle got away with murder. Teachers would see her disability and not expect much from her and she played right into that. I knew she was more than capable as I would see her doing these things at home and outside of school. But if she couldn’t be bothered doing something, she would happily and deliberately play the disability card. She and her friends know how to use their disability to their advantage. One part that is often overlooked in the discussions about how valuable a life with Down syndrome is, is the impact they make on the people around them. Having a sister with Down syndrome has made me a better person. Like many other siblings of people with Down syndrome, I'm accepting, empathetic and have the ability to see things from other people’s viewpoint. I've spent my whole life being around people with Down syndrome and often think the world would be a better place if everyone had Down syndrome. I love being around these guys, there's always laughter, fun and positivity. Being Rochelle’s sibling has brought me many opportunities, from coaching swimming with Special Olympics, to camps where I've made lifelong friends. As a committee member for Special Olympics Canterbury, it makes me proud to see Rochelle running the meetings and contributing to the discussions we have. It's great that she's on the various committees to advocate for her peers. It bothers me when people refer to Down syndrome as a curse. How can a happy child who rarely argues back like most kids, loves routine and brings laughter everywhere, possibly be a curse? The understanding of this disability is, so so wrong. I am disappointed that so many people have such a wrong impression and ignorant storylines on shows like Shortland Street do not really help to educate the community about how great life with Down syndrome really can be. I wonder why other storylines are portrayed with more sensitivity than this, but it just reinforces why I don’t watch this programme and never will.

I wish I had Down syndrome

The Shortland Street Controversy By Andrew Oswin

Andrew Oswin appearing on the September 1st edition of Newshub.

I had an interview on national media with a reporter which got put on television for the 6pm Channel 3 news. This got filmed for the Auckland Newshub. I got asked to do this as a Representative of the Canterbury Down Syndrome Association. I spoke a little bit about one scene that got filmed on Shortland Street which was disturbing to the Down syndrome community. I gave my opinions, thoughts, views and perspectives. I shared about my experiences living life as a person with Down syndrome and what I value in the community. I think that we need to hear from people with Down syndrome to promote their voice, to share their stories, to value diversity in life, to have equal rights, to be respected and have acceptance in society. The message I would like to give to the wider community is that we will not tolerate discrimination against us and to accept us as equal individuals. Andrew Oswin is a member of STRIVE and Canterbury Down Syndrome Association Committee.

Living with Down syndrome By Coen Lammers

Having a daughter with Down syndrome is possibly the best thing that has happened to our family - as well as the most challenging. Watching Bella flourish for the past 16 years, we know that living with Down syndrome is not a curse or punishment, but a terrific, enriching adventure filled with joy and surprises, as well as the odd road bumps. The recent storylines on Shortland Street created a storm in parts of the Down syndrome community because they depict old-fashioned, ignorant ideas around the disability and have nothing to do with our day-to-day experiences in a modern, inclusive New Zealand society. Bella’s birth was a shock and surprise to the family because we had decided not to have any pre-natal screening test. My wife and her family took a while to come to terms with this new reality, but I had grown up with an uncle with Down syndrome and thought I knew what to expect. What I did not realise back in 2001 was the incredible impact our wonderful, multi-talented, sociable and loving daughter would have on our entire wider community.

CHAT 21 | Issue 75, Spring 2018

Bella performing with Jolt in last year’s stage show.

Her outgoing, chatty and cheeky personality has turned her into a mini-celebrity in our small town and most people only know us as Bella’s mum, dad or brothers. We are fortunate that Bella was born in a marvelous, inclusive New Zealand society that encourages and practices mainstreaming in education and positive community participation by disabled people. Like many other countries though, we are currently grappling with the ethical debate around improved pre-natal screening, which now gives pregnant women near conclusive evidence to determine if their baby will have Down syndrome. The New Zealand Down Syndrome Association does not challenge any woman’s right to choose whether she wants to abort her pregnancy, but there is a desperate need for more balanced information for expecting parents to make a well-informed decision. Currently, the advice to pregnant mothers is purely medical and based on potential medical complications that MIGHT happen. On top of the initial shock of a positive screening, young parents are exposed to blatant fear tactics, so it is not surprising that many of them opt to terminate. Unfortunately, our Government does not keep any

statistics on how many women have a positive test They would also see the multitude of life skills Bella for Down syndrome and what percentage decides to is unknowingly teaching her peers, around kindness, abort, but in several countries a deliberate campaign patience, accepting and appreciating diversity, and by governments and medical officials to eliminate helping others. Down syndrome from their society has produced Bella would also be proud to take them to her partsobering results. time job at Coffee Culture where she serves coffees Iceland has nearly reached a 100% termination rate, to her local community two afternoons each week while in 2017 only four births with Down syndrome and is a much loved and valued workmate. were recorded in Denmark. She would show them her swimming medals from Before the New Zealand medical community quietly the latest National Special Olympics, or the video eliminates one section of our society, it is vital for from her Tinkerbell dance solo in the latest stage our country to have a national debate on the value performance of Jolt, a high-profile dance company we put on people with Down syndrome, or any for mixed ability dancers. other disability that can be Or she would take them along screened. to the barista course she is The crystal-ball gazing by currently completing under doctors, who may never guidance of one of New have met anyone with Down Zealand’s leading baristas. syndrome, is frustrating to say Between her school, dancing, the least. sports and work you would D o c to r s d o n ’ t te l l o t h e r struggle to find any Kiwi expecting parents that their 16-year-old girls juggling such child might be obese, may an exciting life. have problems with drugs or Our oldest child is a wonderful alcohol, may have behavioural role model for her younger or learning issues, will cost brothers on how to embrace them hundreds of thousands life and make the most out of of dollars and pretty much it. ruin their carefree life, so We are proud of what Bella why are they so insistent on has achieved, but we’d be the presenting a list of doom for first to admit that the journey children with Down syndrome. has not always been easy, Yes, children with Down with numerous battles with syndrome have a higher officials, teachers, principals chance of heart complications, and agencies to give her the but these are mostly fixed in best opportunities. Bella working at Rolleston Coffee Culture the first months of lives. But saying that, most parents Our Bella has coeliac face similar battles for their disease like many other Kiwi kids, and has been in children, whether they are disabled or not. hospital with pneumonia, but the list of doom never And that is the point that many medical experts miss. materialised. People with Down syndrome are people like all of us In fact, we probably have visited the doctor more with an endless variety of personalities and passions, often with her two brothers and Bella is physically with different strengths and weaknesses. the staunchest and most resilient one of our three Next time you meet a person with Down syndrome, children. maybe try to get to know the person and look When we dragged our family around Europe, the beyond the disability. boys would walk and moan around Rome, Paris You might be surprised to find out how interesting or Barcelona, while Bella would just get on with it, his or her life is, filled with dreams. Just like the rest inspired by the next gelato shop around the corner. of us. I really wish some of the “experts” providing advice to vulnerable pregnant women would spent a few Coen Lammers is a communications advisor, writer hours with our Bella. and editor of CHAT 21. If they would see how she interacts with fellow students at her high school, disabled or not, will show them how wonderfully integrated she is in that community.

Living with Down syndrome

Why we decided to have a baby with Down syndrome Thanks to routine testing, parents are often well aware of whether their child has a high chance of Down syndrome. New Zealand Herald reporter Emily Winstanley looked at how three families handled the news. Auckland parents Kirsten McDonald and Philip Venables found out their unborn baby could have Down syndrome after the 12-week screening offered to all expectant mothers in New Zealand. They decided to find out for sure with an amniocentesis test. McDonald says the doctor who delivered the news asked her to look at the piece of paper with her name and the result, confirming their child had Down syndrome. "Then [her] next words were, 'You're going to have a beautiful baby boy.' That still stays with me, those words from her. She just reminded us that first and foremost, we were going to have a beautiful baby boy, rather than saying, 'Oh I'm really sorry' or even words like 'but'." Thirteen weeks later, baby Joshua was born. At 39, McDonald knew her age would increase her baby's chance of chromosomal abnormalities like Down syndrome, but when she had the 12-week test, the chance showed at one in 80. They'd decided to delay the amniocentesis until she was 25 weeks, because for them, it wasn't a question of whether to continue with the pregnancy, but of wanting to prepare themselves. "Every time we had a scan we were told the risk had increased. We just needed to know so I could enjoy my pregnancy, rather than spend the next 15 weeks being stressed." The test was conclusive, so they met with families of children with Down syndrome, and did plenty of research. "By the time I had Joshua we were just so ready to meet him and not have this abstract diagnosis of Down syndrome. We just wanted to meet our boy.

CHAT 21 | Issue 75, Spring 2018

There was no shock or worry or trauma. It does have an impact on him and I wouldn't change him for the world. If we could take away the Down syndrome, no way, that's what makes Joshua who he is." But like many parents of children with Down syndrome, McDonald is concerned about the way the diagnosis is presented to families. "I don't have anything to say against testing because it prepared me for the birth of my child. I guess what I have an issue with is what information people are given when they are encouraged to have a test and when they get the diagnosis. Most of it is about everything that could be 'wrong' with our children. Imagine if we did that with every diagnosis. I think everyone has a right to have a test and a right to make their own decision, but it's about information." Peter Stone is Professor of Maternal and Fetal Medicine at the University of Auckland, and a representative on the National Screening Unit Advisory Group, which oversees antenatal testing. He disagrees with the idea that there is pressure or coercion of women to make a particular choice. "The screening is based around reproductive choice. The majority of women, whatever they decide, want to know what is going on in their pregnancy." Twelve-week testing, also called "first trimester combined screening", takes into account an ultrasound scan, a blood test, and other factors like a mother's weight and whether she smokes. It gives a specific chance of the baby having Down syndrome or one of a handful of rarer chromosomal abnormalities. If the test shows an increased chance of Down syndrome, one in 300 or less, parents are offered further diagnostic testing â€” the amniocentesis, or less often chorionic villus sampling. It's hard to work out exactly how many women choose to terminate once a diagnosis of Down syndrome is given. Stone says in New Zealand, about two-thirds of women who are given a high chance of Down syndrome and other chromosomal disorders will have diagnostic tests done. In 2015, that was 655 women. Of those who have a diagnosis confirmed, he says about two-thirds again will choose not to continue with the pregnancy. The Abortion Supervisory Committee doesn't keep information on the specific reason for an abortion, so it's impossible to know the exact number.

Kirsten McDonald and Philip Venables with son Joshua

Stone says the termination rate in New Zealand is much lower than in other Western countries â€” for example, Denmark. "I think this suggests there's no evidence of pressure or coercion to have a termination." Iceland and Denmark are often highlighted as extreme cases, where nearly 100 per cent of pregnancies involving a Down syndrome diagnosis are terminated. In England and Wales it's roughly 90 per cent. In the United States, the rate is similar to New Zealand's. One parent who chose not to continue their pregnancy after the diagnosis is Jess (not her real name). After trying to conceive for two years, then a miscarriage, she and her partner were thrilled to become pregnant again. Then came the news they faced a one-in-five chance of the baby having Down syndrome, which was confirmed with diagnostic testing. Jess was in her 40s when they conceived, and, as a medical specialist, was well aware of the higher risk that posed. Before testing, she was sure in the case of Down syndrome, her decision would be to terminate. But in reality, she says making the decision was probably the worst thing she and her partner have ever been through.

Why we decided to have a baby with Down syndrome

"It took us weeks to decide, and I wondered if it might break us up at one point. We went to counselling with the social workers at the hospital, we had a couple of sessions with them really going through what are our hopes and fears and our real core beliefs. I think we came to a place of support for each other. In the end, I felt termination was the only way forward." She didn't feel any pressure to terminate, "I almost felt pressure the other way, but I think that's just personal circumstance." In the end, Jess opted to be induced at 17 weeks. "I felt like I wanted to meet my son, I wanted to be able to bury him and mourn him, so I went through the induction and that was pretty horrible." She's since had another child, who she calls her 'rainbow baby'. Two years on, Jess knows it was the right choice for her family. "It's something that comes back to me often, but I've made peace with the fact it was the right decision." World Down Syndrome Day saw many people celebrating what those with the syndrome can contribute to their community. For others, it was a chance to advocate against antenatal testing, with some saying the syndrome is being tested out of existence. But doctors point out that can't happen altogether, because many mothers choose not to screen at all. In New Zealand, 20 per cent of pregnancies aren't screened, by circumstance or by choice. And then, even when the chance is calculated to be extremely low, it's still a chance nonetheless. Charlotte Ammundsen was 24 when she became pregnant, and her combined testing showed a chance of just one in 12,000. Then, when her now 1-year-old daughter Hayley was born, she immediately thought something wasn't quite right. "In all honesty I didn't immediately think Down syndrome, but I felt like something was a bit off. The midwife was looking at me and she said I see you've picked up on something. We think there are certainly signs of Down syndrome." That diagnosis was quickly confirmed. Ammundsen's in two minds about whether it would have been easier to have known ahead of time. "It would have been so wonderful to properly enjoy the first week, because she was in NICU for three days, and everything combined was overwhelming. Also, the community is amazing, so to be part of that earlier would have been awesome. On the other hand, I'm glad I didn't have that conversation with doctors about all the bad stuff. It's not that scary, she's the best thing that's happened to me." Copyright Canvas/New Zealand Herald

President's pen

Hi Everyone Hope you have all managed to survive the winter without too many illnesses. Spring is upon us and the nights are starting to become shorter as the countdown to Christmas begins. Well, these past couple of months have certainly been a media feast for the NZDSA following on from the storyline of the Shortland Street episode. One of the characters found out she may be having a baby with Down syndrome and the father of the baby advising the character there are several options available if this was the case – one of them being termination. The NZDSA wrote to the programme to ask them to supply our contact details at the end of the programme in case anyone going through this same scenario may want some support. TVNZ declined to do this as they felt it wasn’t necessary and the storyline was in early stages of development. The NZDSA was horrified at some of the language used during these episodes and the fact that TVNZ did not consult the NZDSA on some of the emotions that would have been going through the parents’ minds. They advised they consulted a health professional, which is all well and good, but that doesn’t give a balanced representation for the character to portray to the public who watch Shortland Street. A lot of our young people with Down syndrome watch Shortland Street and the NZDSA was horrified to think that they may not feel valued when a programme on TV raises the question on the reasons why a character would not have a baby with Down syndrome. The great thing to come out of the media attention is all the good news stories we have been reading on people’s experiences around having a person with Down syndrome as part of their family.

CHAT 21 | Issue 75, Spring 2018

Rochelle gets ready for The Unforgetaball with her sisters Gemma and Jess

This will be my final “President’s Pen”, as I have now completed my two three-year terms, and the AGM in October will see a new President take the reins. I would like to thank those of you who have given me positive feedback about what I have written over the years. It has been difficult at times trying to think about what to write but I have drawn from my experiences and hopefully some of the things I have shared with you have helped some of you when faced with similar dilemmas to what I have been faced with. I hope to see some of you at our AGM in Auckland on the 26th October. Until then, take care and enjoy this edition of CHAT 21. Shelley

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

Andrew's Adventures The Travels of Andrew Oswin

Andrew on the bridge in front of the river Danube in Budapest

Down Write Brilliant

I have had a very adventurous and luxurious holiday with my parents for four and a half weeks. We started in Singapore and we got to go on the Singapore flyer, went to the Gardens by the Bay, and had a gondola ride and two luge rides in Sentosa Island. I also went on a night safari tram ride looking at the wildlife animals. After that we flew to Amsterdam and stayed one night at the Hotel Aitana Room Mate. Then the next day we went on board the Avalon Expression, our home for the next fifteen days. During the river cruise I did some fitness in the gym, as the food at every meal was absolutely amazing, and went on excursion activities with the other passengers. We had lots of entertainment in the evening. Some of the cities I visited were Cologne, Würzburg, Bamberg, Linz, Vienna and Bratislava. I also visited

Meeting the Governor General By Edward Borkin At the last STRIVE Funshop we went to the Government house. There I met the Governor General and a few lucky people got National Achievement Awards for being valuable members of the community.

Down Write Brilliant

Budapest, the capital city of Hungary, and I got to go to a concert by the Hungarian Folk Ensemble and Orchestra. During the day I went out for lunch to have pizza and pancakes, stayed one night at the Starlight Suiten Hotel and completed my fifteen-day river cruise along the Rhine, Main and Danube rivers. I had such a lovely experience in Verona, the city of Romeo and Juliette. I got to see two beautiful operas and they were called ‘Aida’ and ‘Carmen’. The operas were held in the huge outdoor amphitheatre. There were thousands of people attending both operas and it was very special for me. I got to catch up with my uncle and his partner from Perth who are both New Zealanders. We got to meet up with them at the apartment. I also got to share this part of the holiday with my sister and her boyfriend. After leaving Verona we went on the train to Lake Como. It is very famous for its attractions, visitors and film sets. I wrote a journal of my overseas holiday so that I can remember what I did. The last train ride of my holiday was to Milan where I got to visit a beautifully painted church which used to be a convent for nuns’. The final stage of my overseas holiday was going back to Singapore to attend the operatic lights at the Gardens by the Bay. The highlights of the holiday for me were experiencing the Singapore culture, the river cruise, and attending the operas ‘Aida’ and ‘Carmen’. I hope this will truly inspire many readers who will read this article and be encouraged to take their children with Down syndrome travelling overseas with them. ‘This was a trip of a lifetime’. Andrew Oswin

Everyone clapped and I shook the hands of the people who won awards. We also talked about how to interview people. This is because STRIVE members are going to be interviewing people with Down syndrome. The research will be looking at friendships relating to people with Down syndrome. I enjoyed interviewing people and I learned how to get people’s attention when interviewing. I look forward to seeing the results of the research from the interviews. Edward Borkin is a member of STRIVE

Unforgettable Glasgow By Carlos Biggeman I would like to share with you all my experience as one of the speakers at the World Down Syndrome Conference in Glasgow. It was a great experience for being a participant and to meet wonderful people. I felt privileged to meet the Lord Provost of Glasgow, she was lovely, we talked a little and then she asked me if I was enjoying the congress. I met Andy and Sara Merriman from London at the congress and then we shared the table at the Family Scottish Night. Andy is a full-time author and scriptwriter for television and radio. He works with his daughter Sara, they both are a great team. We met also Adam Sloan from Glasgow, a Contemporary Dance Artist, my parents and I shared a table with him and his mum at the Gala dinner. At lunch time I met three lovely Brazilian ladies and with them I had the opportunity to practice my Portuguese. We had a great time attending together some presentations. There were some Spanish speakers as well and it was great to interact with them in Spanish. I also met some Kiwi friends whom were speakers too, Katrina, Adam, Erin and of course Zandra was there on behalf of NZDSA. Shéri Brynard from South Africa was the speaker before my presentation. Her presentation was very interesting, then between our presentations there was a workshop. The organisers did some questions related to Human Rights and while I was waiting I was feeling a little nervous. Then the big moment arrived. I was calm standing while I speak. I used body language to emphasise my words. I felt so proud when I finished it. I just had an amazing week visiting tourist places and attending every presentation that I could at the congress. I was very lucky to be part of such a wonderful event, having the opportunity to taste the famous Haggis, experiencing, dancing the Scottish music, making new friends, speaking in front of lots of beautiful people about my achievements. Hanging around with my parents and taking many photographs. This is part of my speech which I would like to share with Chat 21. I am sure that for many of you my story would be familiar. “Down Syndrome is not a disability, disability is not to try”. I am an international champion swimmer, awarded photographer, polytechnic graduate, traveller, loving brother, caring son and I have Down Syndrome.

Down Write Brilliant

Carlos Biggeman with DS advocate Sheri Brynard from South Africa.

Over the last 27 years of my life it seems that the odds have been against me from the beginning, however I’ve grown accustomed to a good challenge, in fact, there’s nothing I like more. By nature I am an underdog but not in spirit. From a very young age, doctors, teachers, peers and a large number of the society around me has undermined me and every time I have proved them wrong. “He won’t learn to speak and you’ll be lucky if he lives past the age of five”, that’s what the doctors told my parents. Well, look at me now. I speak five languages and I’ve lived five times my life expectancy. This is only one of the many barriers I’ve broken, only one of the many expectations I have exceeded. What I am here for is to tell you my special secret, although it should be no secret at all. I am here to tell you that the old saying of “you can do it if you put your mind to it” applies to absolutely everybody. My achievements, and I’ll try to be humble, are extensive. None of them came for free, like everything in life, there needs to be great effort and great passion. I have both of these elements in buckets. I am lucky enough to see what is in front of me and to grab every opportunity that comes my way, because the way I see it what I was born with is not a disability. Nowadays some people who are my age, they waste their time playing Xbox or Play Station and watching TV for hours, doing absolutely nothing. They don’t appreciate their opportunities and that’s what I call disability. I face the challenge, I work hard and my aim is to achieve high. Hard work and determination is what we need to achieve anything in life. Believe in yourself, believe in us.

Getting down and dirty By Kathryn Lyons I did some exercise like running, crawling and climbing in the mud in the Tough Guy and Gal competition. We got our numbers that went on our shirts. We started running, got our clothes dirty I actually felt happy. I climbed onto the sheep bales, walked on the beach, went through the little bit cold water, climbed over the trees, climbed under the wires and I got zapped on my bottom only once. Having fun running to the finish line, I got dressed in warm clothes and got some sport prizes at the end. Oh, and I fell asleep in the van on the way back home. Kathryn is a second year student studying the NZ Certificate in Skills for Living, and Skills for Work, at EIT in Hawkes Bay. She competed with some mates in the Tough Guy and Gal at Clifton Station for the second time.

Kathryn competing in the Tough Gal competition

Partying at Pink By Bella Lammers

Bella at the Pink concert in Dunedin

Down Write Brilliant

We drove to Dunedin to see Pink. We stopped in Ashburton to have hot chocolate for morning tea. Pink is my favourite CD in the car and “So What” is awesome. We went to the hotel and unpacked my bag. We got a Pink t-shirt and went to the stadium with Mum and Dad. Pink had a sparkly black dress on stage. My two favourite songs were “So What” and “Just Like Fire”. In the car on the way back I ate chocolate and told Mum and Dad that now I want to see Miley Cyrus.

Support to make decisions Trish Grant, Director of Advocacy at IHC explains why people with intellectual disabilities need to be enabled to make their own decisions. “People with intellectual disabilities want to be able to make decisions on how we live our lives. Sometimes we may need help but that doesn’t mean we can’t make decisions. It feels awful when you are not heard, not listened to, not acknowledged or treated with respect. It feels very awful when someone else takes control of your life. It is disempowering when someone else has the final say, you don’t have a choice.” David Corner (IHC Self Advocacy Advisor) Being able to make our own decisions is a key part of how we all live our lives and being able to make free and informed choices is linked to our sense of wellbeing. Most of us use supports to help us make decisions - we ask for advice, gather information and often consult with family and friends we trust. All of us, including people with intellectual disability, get better at making decisions when we have lots of practice starting from childhood and the right support. The support a person with intellectual disability needs will look different for each individual and can change with each decision being made. Knowing and understanding the person who is being supported is critical, as is ensuring that the right support people are involved for specific decisions being made. Typically, other people’s judgement of an individual’s capacity and ability to make decisions determines the extent to which they are allowed to make their own decisions. There is a general misunderstanding about intellectual disability and capacity, with views that capacity is fixed and that unwise decisionmaking indicates a lack of capacity. If a person with an intellectual disability makes a poor decision, they can be viewed as being incapable of making future

Support to make decisions

decisions – but, like building a muscle, the more someone has the opportunity to do something, the better at it they become. IHC promotes supported decision-making as being central to quality life outcomes for people with intellectual disability. In all of our Advocacy work we draw guidance from the United Nations Convention on the Rights of Person’s with Disability (UNCRPD). Article 12 of UNCRPD is about being treated equally by the law. For people with intellectual disability this means: • being respected by the law like everyone else • having the same right to make their own decisions about important things as everyone else. • having the proper support they need when making decisions • If a person really does need someone else to make decisions for them then there should be rules to make sure this is done properly. New Zealand’s progress on implementing the UNCRPD is up for review this year and the Committee will ask about what has been done to shift to a supported decision-making approach in legislation and practice. Issues of concern are likely to include whether: • all people with intellectual disabilities have the right supports and safeguards to make and give effect to their own decisions, including those with more severe impairments and who communicate nonverbally • sufficient recognition is given to “will and preference” rather than “best interests” • the way capacity or competence is defined and assessed is inconsistent with the UNCRPD. You can find more information about supported decision-making, workshops and IHC’s Advocacy programme at ihc.org.nz/advocacy

2018 World Down Syndrome Congress

World Congress inspires global Down syndrome community By Zandra Vaccarino

The hosts of the 13th World Down Syndrome Congress in Glasgow, need to be congratulated on delivering on their marketing that the 2018 World Down Syndrome Congress would be “three days filled with world renowned speakers, cutting edge research presentations, and opportunities to socialise and meet people from across the Globe”. I attended the WDSC 2018 as a participant, National Executive Officer for the NZDSA and as co-presenter with Erin Smith, a member of STRIVE. The title of the presentation was STRIVE – SelfAdvocates Working Together To Have a Voice and Become Rights Champions. The presentation highlighted the journey of STRIVE, the milestones in the development of STRIVE and how they use their self-advocacy and leadership skills to influence service quality and contribute to transformation. I had minimum input into the presentation, and watching Erin so confidently present was my personal highlight at the WDSC 2018. I also attended the pre-conference “Health Day Symposium” organised by Down Syndrome International for health care providers and researchers who have a special interest in the clinical care of children and adults with Down syndrome. The symposium provided the opportunity to consider current and important developments in prevalent medical conditions. The four topics presented were 1. Emerging issues relating to coeliac disease in children with Down syndrome. 2. Adult health screening – Should we be screening for conditions less common in Down syndrome which are recommended for the general adult population? 3. Sleep disordered breathing in children with Down syndrome. 4. Mental health in adults with Down syndrome – prevalence, presentation, grief/ bereavement, impact on caretakers/family, comorbid medical concerns, treatment approaches.

CHAT 21 | Issue 75, Spring 2018

Following the initial presentation, we had the opportunity to share our thoughts and experience in the field. The focussed discussions facilitated participants to reach consensus on key areas, moving forward with the long-term aim of improving healthcare outcomes for people with Down syndrome. The discussions also highlighted the disparity of approaches, resources and health outcomes around the world. Unfortunately there is not enough space to report in detail on all these sessions in this edition of CHAT21, but I will be sharing the information in future articles. The key message I took away from the Health Symposium was the additional health risks that seem to be emerging around sleep disordered breathing. This is crucial for further research and awareness, so children and adults with Down syndrome are assessed and treated. The discussion did address the issue that whilst assessments can be done, often the treatment, like the use of CPAX machines may not be tolerated well or even used, so the solution is not without challenges. Back at the main conference it is very difficult to put into words the energy, excitement and anticipation that was almost tangible at the opening ceremony. It was truly a sense of community as an estimated 1250 people with Down syndrome, their families and professionals from over 95 countries watched as people with Down syndrome marched into the auditorium carrying flags to represent the global Down syndrome community attending this event. It was a wonderful celebration. The WDSC programme offered four strands: experience, research and practice, widening opportunities, and improving lives. I certainly experienced many moments of intense FOMO (Fear Of Missing Out) as each session offered so many concurrent sessions that it was extremely difficult to select a handful of sessions from the over 150 sessions on offer.

Erin Smith and Zandra

Zandra and Christel van Baalen at the opening ceremony

Deciding on what to attend was challenging but I finally decided that instead of following one or two streams, I would rather cover a broad range of topics, so I could glean information from across the various stages of life for people with Down syndrome. I also attended presentations that were relevant to the NZDSAâ€™s recurring support requests and work streams. These are the key sessions I attended: 1. Informing, supporting and empowering families 2. Youth and adults â€“ journey to independence and a good life 3. Antenatal screening 4. Health 5. Education 6. Speech and language. As I mentioned before I will share my insights in future articles and through new resources in more detail, but the information I gained will inform the support the NZDSA can provide, and assist with systemic advocacy. The key message I took home from the range of sessions I attended was that the people with Down syndrome and their families truly drive change, widen opportunities and improve lives.

2018 World Down Syndrome Congress

Systems, programmes and professionals assist, but the true drivers of sustainable and ongoing change and transformation are self-advocates and their families. Congress presentations are made available on their website To be attending a WDSC is indescribable and is something that must be experienced to be fully appreciate.

As such, why not make plans to experience a WDSC for yourself? The next WDSC will be in 2020 in Dubai and the 2022 WDSC will be closer to home in Brisbane, Australia.

2018 World Down Syndrome Congress

Congress celebrates success of people with Down syndrome By Maree Kirk

The World Congress involved a great celebration of the lives and capabilities of children, youth and adults with Down syndrome in families, local communities and the international arena. The Congress celebrated the recognition of success, of the range of achievement for people with Down syndrome that involves both relationships with families and relationships to others as health professionals, educators, support workers or personal assistants, disability organisations and those providing work opportunities. The Congress evoked enormous respect for selfadvocates who addressed the Congress and a quest for understanding of the experiences, research and international practice presented throughout the four days of the Congress. The online information is now available and this is a valuable source of reference. The topics covered ranged from screening, neonatal challenges, early intervention approaches, emotional and behavioural reflections from parents, siblings' experiences, children with and without Down syndrome peer relationships, workplace advocacy and support models, adults and aging, health and fitness, adolescence and regression, dementia and a range of relationships topics and personal assistant relationships, and aspects of curriculum topic support. This was a broad and comprehensive coverage and I have selected a very brief number to highlight. The key speeches from the Health Symposium on Tuesday were around sleep apnoea presented by medical specialists such as Cathy Hill (http:// wdsc2018.org.uk/wp-content/uploads/2018/09/ Cathy-Hill.pdf) and Coeliac diagnosis presented by Peter Gillet (http://wdsc2018.org.uk/wp-content/ uploads/2018/09/Peter-Gillett.pdf). On Friday, Rachel Carr presented on Relationships and sexuality. The literacy presentations were focused on reading intervention, apps and communication tools I would suggest. For example on Wednesday Prof Sue Buckley, and Talking Mats (available in New Zealand); or on Thursday, Colin Dean and Julie Brown,

CHAT 21 | Issue 75, Spring 2018

Christopher Lemons. The maths and numeracy advances were particularly encouraging and a lot of research and data was presented in these sessions with a new app developed in Germany based on cognitive ability for students with Down syndrome. Please check out the three Friday sessions by Elisabetta Monari Martinez; José Ignacio Cogolludo Agustín, S. Lanfranchi among others. Down Syndrome International (DSI) is working to develop International Guidelines for People with Down Syndrome based on Article 24 of the UN Convention for Rights of People with Disabilties, 2006. Through these guidelines DSI aims to assist member countries to meet obligations under UNCRPD and to provide guidance to countries developing their own standards for the provision of evidence informed, best practice education for learners with Down syndrome. I will be following this up for New Zealand with Bridget Sneddon who we are lucky to have as our long-serving New Zealand representative on DSI and this will coincide with New Zealand’s Education Review. For further information on the speakers or their presentations go to the World Congress website: wdsc2018.org.uk/speakers/ or feel free to contact me on bopdsaproject@gmail.com

2018 World Down Syndrome Congress

Congress provides inspiring learnings but no magic pill By Tracey Laker

Zandra, Sarah Merrimant and Tracy Laker

It is nice to take some time to think about the World Down Syndrome Congress, as life since has been a whirlwind. I am a joint business owner with my husband Tony, of Laker House of Travel in Invercargill and mum to our daughter Meg who is 17 and the most incredibly patient, kind and forgiving sister. I am also mum to Flynn, who has Down syndrome, but more importantly who is “turning 15 on the 1st of October” just in case you are one of the few who haven’t heard. Flynn is an amazing boy, exceptionally polite, quick witted, really clever and fortunately has great speech. He and his sister and cousins (who he calls his Minions) run a sock business called Flynn’s Sox and he also works at a legal firm, Cruickshank Pryde, for one hour each week doing office duties. He loves working there, applied himself and would have accepted any position given. Even when toilet cleaning was mentioned jokingly by his lawyer cousin Nic Popham during the interview, Flynn replied “no problem, I have dreamt of being a janitor since I was a baby”. Getting Flynn to work is the easy part of our day, getting him out of bed (unless it’s the weekend), in the shower, brushing his teeth, getting him to school, keeping him at school, stopping him continually

2018 World Down Syndrome Congress

wanting food and getting him off technology is what makes my hairdresser a rich man, continually painting out the greys. So when I learnt that the World Congress would fit in perfectly with a work trip my husband and I were escorting to Europe, I jumped at the chance, hoping to pick up a magic pill to help get us through each day. The Congress was a well-run event with interesting speakers, inspiring stories and at times a little bit sad. Although there were many learnings at the Congress with different parts of the world doing some stunning things, my favourite part was listening to keynote speakers Sarah Merriman and her Dad Andy. They have written a book called A Major Adjustment, “How a Remarkable Child Became a Remarkable Adult”. I had the pleasure of having lunch with the Merrimans and when Sarah asked me for the third time if I had bought her book yet, I pushed my lunch to the side and lined up to purchase a copy. As for the magic pill, I am still searching, although I did find a queue of others also looking. So if you are reading this and can help our crazy household become not quite so crazy we would love to hear from you. If not WDSC Dubai 2020 here I come.

The flag ceremony

Becky Donovan wins 2018 IHC Art Awards An intricately detailed drawing by Dunedin artist Becky Donovan has won the 2018 IHC Art Awards and $5000. Becky’s piece, Cat, after Barry Cleavin, is a tribute to Christchurch-based printmaker Barry Cleavin. She used graphite to copy a Barry Cleavin image, and then experimented with erasing what she’d done. Her intricately detailed stalking cat has its skeleton visible in some places. This is not the first time that Becky’s work has been featured as a finalist in the IHC Art Awards. Her drawing, Fashion Models, came second in 2016. Becky works at the IDEA Services Art Space studio in Dunedin. Art Space hosts between 30 and 35 artists with an intellectual disability. Over recent years, a number of Art Space artists have been successful in the national IHC Art Awards – reaching the finals and winning top prizes. Second prize of $2000 went to Amanda Brennan and third prize of $1000 was won by Colleen Bauer. For the third year in a row the top three prizes went to an all-female line-up of artists. There were 428 entries in this year’s Awards. At the gala event Art Awards Ambassador Dame Denise L’Estrange-Corbet noted this resulted in a broad range of mediums. “As well as the sheer volume of artwork, I am particularly impressed by the

CHAT 21 | Issue 75, Spring 2018

wide variety of media and themes, showcasing the versatility and scope from the people here in this room.” The top three prize-winners were picked out of 30 finalists nationwide and announced at Shed 6 in Wellington on Thursday 26 July. The finalists’ work was auctioned at the event, with all proceeds from the sales going solely to the artists.

Charlizeâ€™s love for art earns plaudits and hard cash By Kymberlee Fernandes of Stuff

She might only be 13, but one of her artworks has already earned almost $3000. Charlize Wilson was named the winner of the 2018 IHC Art Awards People's Choice Award from the 400 art entries across the country. The South Auckland Middle School student says art helps her "be herself". "I like doing art because it's so much fun," she says. Her painting is called Looking Out from the Inside. "The art is just a person looking outside. She is happy, she likes the view a lot," Charlize explains. Her award includes $1,000 in prize money, but then collected a further $1,650 after the piece was auctioned. When Charlize found out she won, she says she felt like "a superstar". Her parents say she's been singing and dancing ever since she could walk and first started drawing and painting at eight.

IHC Art Awards

She's been surrounded by that kind of environment - music, performing arts, her dad Petia Wilson says. "It was probably natural for her to just pick up a brush and paint. I'm really impressed and happy for her." The IHC Art Awards have run since 2004 and is open to all New Zealanders with an intellectual disability, age 13 or over. Thirty of the top artworks were selected by judges Jae Kang, Tim Walker and Sarah Wilkins where the winner of the People's Choice category was then selected by way of online public voting. Charlize will join her dad in his upcoming art exhibition where she will contribute some abstract art pieces. Her next work will be about a girl looking at her phone. Her mum, Caroline, says Charlize has always been good with colours and the canvas is an opportunity for her to showcase her world. "Because of the fact that she has Down Syndrome, she sees things quite differently," she says. "It's exciting because it gives us an insight into her world, and maybe explains the colours, the strokes and the angles." There are plans to eventually build a collection that revolves around the theme of a girl looking through. "It gives a different angle of the world." Copyright: Stuff

Learn, inspire and lead at 2018 Inclusion International Congress By Zandra Vaccarino

do to ensure that our son is always empowered and supported to always exercise his right to make his own decisions and what he needs to know so that he can advocate for his rights and dignity. The Global Self-Advocacy Summit at the Congress was attended by over 400 self-advocates and supporters from over 30 countries to discuss the big issues in their lives. The outcome of the discussion was to develop a call for action and demand to: 1. be included and be part of our communities 2. be equally valued 3. be employed 4. have inclusive education 5. close institutions Zandra and Vincenzo Vaccarino

I was very fortunate to be sponsored by IHC to attend Inclusion International’s 17th World Congress in Birmingham. It was such a privilege to participate in the largest global gathering of self-advocates with learning disabilities, their families and supporters as we shared examples of successful inclusion and we celebrated progress of the inclusion movement across the world. Over a thousand people from 71 countries gathered in Birmingham with a shared vision and unwavering commitment to ensure that all people with learning disabilities have the right to inclusion. The theme of the Congress was Learn, Inspire and Lead in response to members asking for opportunities to learn new skills, and to share inspiring stories, practices and models. The Congress also provided the platform for discussions on how to lead change, how to become effective change makers, to ensure that local communities become more inclusive, and to work together at a global level to drive progress to ensure that we build a fully inclusive world. Whilst the congress was an opportunity to celebrate achievements and success, it also included many sobering and painful moments because people with learning disabilities continue to be the most marginalised people in society. A few times I was challenged by self-advocates sharing their aspirations and the challenges they face. It made me stop, reflect and consider what I need to

CHAT 21 | Issue 75, Spring 2018

Other sessions I attended explored: families, education, health, employment, systemic advocacy and prenatal screening.

Strong Families

The consistent message was that families need support when they are most vulnerable. They said that hope was important and that the support of other parents was crucial. The connection to other parents was mostly facilitated by support groups within their communities. The parents shared that prior to connecting to other parents they were isolated, stressed and struggling, but once they connected to other families who shared a similar experience, it helped them to build their capability and resilience. A number of initiatives were shared and it struck me that it started with just one parent or family member but it didn’t end there. The initiative led to parents meeting and working together either informally or formally and now the individual was sharing the initiative at a Global Congress. A few national organisations also shared how collective family advocacy had brought about change for their community. A consistent message emerged and emphasised that change will only occur with significant and ongoing advocacy because 10 years after the ratification of the UNCRPD we still see the same issues at play. So the message was that “one proud and powerful voice” is crucial and the best ambassadors and

New Zealand and Australia delegates

advocates for change are people with learning disabilities. Our role is to listen and to support selfadvocates.

Education

The key message was the call for inclusive schools. The cautionary note was that as long as funding is invested into segregated schooling and two parallel education streams continue to exist, then realising inclusive education will continue to be challenging. The self-advocates also demanded the right to go to school and to be included in the same classrooms as other learners.

Health

We all know that people with learning disabilities experience the worst health outcomes in society and that health systems routinely fail people, so I attended the session “Transforming Healthcare”. The common messages that all the different p ro g ra m m e s i d e n t i f i e d we re t h a t m e d i c a l professionals need information. The programmes therefore included creating awareness, and providing resources and training. Some of the programmes discussed sexual health, Fit 5, and “Treat Me Well” https://www.mencap. org.uk/get-involved/campaign-mencap/currentcampaigns/treat-me-well

Employment

The conversations I had with different people and organisations indicated that while pockets of employment stories can be showcased, it is not something that is universally enjoyed, and is a crucial area for change.

Systemic advocacy

The need for more effective ways to advocate was another common message at the Congress. The sessions I attended looked at different strategies like engaging more at a policy and political level,

as well as exploring opportunities for like-minded organisations to work together to identify allies, stakeholders and other human rights’ movements to progress transformational change. Mentoring families was also stressed so that they feel empowered to share their powerful stories and to ensure that we continue to renew, strengthen and sustain the family advocacy movement. Another powerful message was that “an inclusive life starts with family life” - it is the gateway for selfadvocates to build their potential and capacity to advocate for self and others.

Prenatal screening

“From Cradle to Grave” was a session that explored the profound social impacts of prenatal testing and physician-assisted death. The discussion delved into the ethical issues, and how prenatal screening and assisted death undermine the value of life with a disability. The discussion also explored the injustices and current norms. We ended with a discussion on what we can do to change the current situation. Systemic advocacy, raising awareness and ensuring legal frameworks were in place were offered as specific means to address current practices. We also discussed the importance of changing the current negative narrative through positive valued narratives so that the lives of people with disabilities can be valued. I left with Robert Martin’s words echoing in my thoughts “institutions are not just brick and mortar but the actions of attitudes and actions of others”. My personal call to action is to be unwavering in my position on full inclusion and to continue to challenge institutional attitudes and actions and to advocate for real change in every aspect of life. Special thanks to IHC for sponsoring me to attend a fantastic Congress!

Learn, inspire and lead at 2018 Inclusion International Congress

Feedback on the Inclusion International Congress By Vincenzo Vaccarino

I was so happy and excited to attend the Inclusion International Congress. It was so cool. I learnt more about my rights, inclusion and leadership. I met lots of people and made new friends. I got to see new things and do different things and I loved it all. I would like to go again.

Global Self-Advocacy Summit

The Global Self-Advocacy Summit I was part of was such an awesome meeting with hundreds of selfadvocates from lots of countries. We watched a great video about Rights. I joined a group of self-advocates to discuss issues in our lives and what is difficult for us and what we want. We got to choose posters that we believe are important. I picked: • We demand real jobs in the community with real pay. • We demand that all institutions are closed. We spoke about what we want for the future. What was important for me was to stop discrimination. I also want to tell you about the different workshops I went to. In “My Voice Counts” we talked about how to use your voice and what to say. It is important to learn about your rights so that you can use your voice and our abilities. I appreciated what they say. I didn’t understand everything because people come from different countries and their accents were different. In the “Empower us – Becoming a Self –Advocate” workshop, Luis Gabriel Villlareal from Colombia, Mia Farah from Lebanon and Frances Stel from Italy told us about self-advocacy groups. They said selfadvocacy is for everyone and we can learn more and we need to tell others about self-advocacy. The workshop called “Empower Us: What are my rights”, had two presenters, David Corner from New Zealand and Jayne Akinyi from Kenya. David Corner spoke about lots of rights like the right to vote and the rules like the right to decide where you live and what you want to do in your life.

CHAT 21 | Issue 75, Spring 2018

Jayne talked about people living in Kenya what they do in Africa. She spoke about people with disability belonging to self-advocacy groups in Africa and about people wanting to having jobs. She said people did have rights but it was difficult for people with learning disabilities. I also attended a presentation by Carlos De La Torre from Spain, Mia Farah from Lebanon and our Voices Council from the UK. The session was “Including Self-Advocates in Running organisations” The speakers spoke about their leadership groups, what they do in their countries and tips about how to run good meetings. It was interesting. “Where Do We Go from here? Anywhere we Want; Equality for Women with Disabilities”. The speakers told us about women living in Mexico and Romania, how some of them struggle for their rights which made me feel sad. I also attended a workshop “Empower us: The Right support” where Sara Pickard from the UK and Jayne Akinyi from Kenya talked about what good support looks like, when we may need support and how we can teach people to give us good support. I really enjoyed this workshop. The final workshop I attended was “My Community Includes me” by Joachim Bosch, from Germany, Simon Duffy and Wendy Perez from the UK and Tia Nellis from the USA. We talked about inclusion like flatting, having friends, working, getting married, going to weddings and parties. I liked hearing about what is happening in other countries and telling our stories. There was a lot more to do at the Congress and I met lots of new people at night when we were watching singers, dancers and musicians at the town hall and during the disco. Thank you so much IHC for supporting me to go. It was awesome, I learnt lots and I loved it. My dream is to talk to politicians about rights for people with Down syndrome.

What’s new in the IHC Library? IHC is very pleased to let you know that they now have access to a few streaming videos from Kanopy films. Library members can access these for no charge using their library username and password. If you are not sure what they are please contact IHC and they will help you out. To view the list of what they have simply go to the “Advanced Search” feature on the IHC Library catalogue and select “Streaming Video” under “Limit to any of the following” and then click on the pink search button.

Some that have proved popular so far are:

Lily: a longitudinal view of life with Down syndrome

These films together present a longitudinal portrait of an impressive person who is living with Down syndrome. Produced by her mother, they present a loving portrait of the triumphs and challenges in Lily's life at age ten, twenty and thirty.

The sandwich kid: the siblings of people with disabilities

Disabilities affect not only those who are diagnosed, but they have a strong impact on the siblings of people with disabilities. The Sandwich Kid seeks to give a voice to those who are impacted by the day-to-day living with a brother or sister having a developmental or other disability.

Down syndrome YouTube clips

We have also added some YouTube clips providing a selection of 18 items of varying lengths and subjects portraying positive and life-enriching stories about people with Down syndrome. You will find these on the list of streaming videos.

What's new in the IHC Library?

New DVD: Me too = Yo, tambien (DVD)

"Daniel is the first European with Down's syndrome to graduate from a university. He starts a social services job as an office worker and embarks on a romance with Laura, a neurotic but 'normal' co-worker, drawing the attention of both their co-workers and families. But these rebellious souls refuse to give in to the rules as they find friendship and love as they've never known." - DVD CASE Please note it contains offensive language and some sex scenes. The book “Pablo Pineda: being different is a value” is about the actor who plays Daniel in this film based on his life.

The many faces of Down syndrome: stories of inspiration, hope and laughter

compiled by Ann Aubitz This book is a collection of stories from families caring fo r p e o p l e w i t h D ow n syndrome. Follow these 15 amazing people with Down syndrome in their life journey. From a year old to sixty the families share their stories of inspiration, hope and laughter.- Book cover IHC would love to hear from you with your queries and to help find the right resource for you. Your library team (Phil, Ros, Ann and Michael) on 0800 442 442, email tem 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 Numicon Kits Calling For Expression Of Interest

Yes, now is the time to start thinking about whether you would be interested in loaning the NZDSA Numicon kits for 2019. Numicon is a multi-sensory, structured maths programme. If you would like to know more about Numicon the website is numicon.co.nz • • • • •

•

The NZDSA has 16 kits to loan to NZDSA members. These kits can be used at home or school. The loan period is from February/March to the end of November. The NZDSA does require you to pay a refundable bond of $60.00. The NZDSA will reimburse you the $60.00 bond if the kits are returned clean and complete. The only cost to you is the courier and handling fee which is $30.00 and the cost of returning the kit to the NZDSA.

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

World Down Syndrome Congress needs a logo

The World Down Syndrome Congress (WDSC) is coming to Brisbane in 2022 and we're inviting people with Down syndrome from all over the world to design a logo for the event. Entries can be drawn on paper or created on a computer. Please email us on info@downsyndrome.org.au if you would like to enter the competition and we will send you an entry form with more information. Entries close on 30 November 2018, so get in touch with us soon.

Thanks

If you would like to loan a kit form please contact Linda te Kaat at nzdsai@xtra.co.nz or phone 0800 693 742, ext 2. and return by post or email by 10 December 2018.

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.

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

Joyce Fisher Charitable Trust Lottery Minister’s Discretionary Fund NZ Lottery Grants Board Holdsworth Charitable Trust The Trust Community Foundation Thomas George Maccarthy Trust Eastern & Central Community Trust COGS Christchurch COGS Hamilton COGS Manukau COGS Manawatu/Horowhenau COGS Central Otago COGS Whangarei

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 75, Spring 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 75, Spring 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

Coen Lammers CHAT 21 Editor 027 730 239 editor@nzdsa.org.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.

The Recreate Ball

0800 693 724 | nzdsa.org.nz