The Brisbane World Down Syndrome Congress 2024
Editorial - Spring 2024
By Sarah Paterson-Hamlin
Tēna koutou,
The metaphorical ink had barely dried on this Editorial when the Government announcement regarding the changes to the Ministry for Disabled People/Whaikaha came through. I was at the Raukatauri Music Therapy Centre when one of my colleagues told me. For a building full of music therapists, the news that Enabling Good Lives (EGL) approach was to be put “on hold” was far from welcome. For now, we hold on to the Government’s emphasis that they continue to be committed to EGL principles. I strongly encourage all readers if they have capacity to write to their local representatives and to Minister Upston to express your response to this announcement.
In much happier news, this edition is full to bursting with updates, photos, articles, and reports of the World Down Syndrome Congress held across the ditch in Brisbane this July. New Zealand sent a 48-strong delegation from across the motu, and I was honoured to be part of it. There was enough going on to fill 50 editions of CHAT 21, so it’s been a challenge to choose just some of the highlights to share with you. In fact, I’m not limiting myself to one edition. This will be the first of five editions of CHAT 21 inspired by the World Down Syndrome Congress, and in particular the incomporable Brian Skotko and friends’ work on the global Down Syndrome Societal Services and Supports Survey (see page 14 for more info). To align with the focus areas of that survey, the next 5 editions will have the following themes.
• Spring 2024 (this edition): Health Equity
• Summer 2024-25: Community Inclusion
• Autumn 2025: Education
• Winter 2025: Policy
• Spring 2025: Independence.
In addition to taking a look at community inclusion, our summer edition will also be our 100th!! Wow! I wonder if we’ll get a telegram from the King? It’s very special to be involved with CHAT 21’s 100th issue, and I would love any contributions or memories from you all to include! Finally, there’s a piece of news I have been SO excited to share with you all. CHAT 21 exists to represent and connect the Down syndrome community. This kaupapa is not possible without the voices of people with Down syndrome themselves, and we are so lucky to have such a wealth of talented writers and photographers who contribute to this publication. One of these writers has long stood out to me for his dedication, his reliability, and his eloquence. It gives me great pleasure therefore, to introduce to you all our brand
new NZDSA team member and CHAT 21’s first ever paid feature writer – Mr Andrew Oswin!!! Congratulations Andrew, I am so excited to be working with you.
I hope as Spring arrives, you all find many reasons for hope and optimism. Thank you so much to all our wonderful contributors, and the NZDSA for enabling me to attend the World Down Syndrome Congress 2024.
Mā te wā, Sarah Paterson-Hamlin
Around the World
This time around, the world came to Brisbane! Around 45 countries were represented at the World Down Syndrome Congress, from every continent on earth (apart from Antarctica – maybe one year a delegation of penguins can take part). So for our Around the World feature this year, please enjoy some of the images of when the world came to our Aussie neighbours.
On the Socials
Kelle Hampton is a blogger and best-selling author who also maintains a beautiful Instagram profile. Her posts celebrate the colours of life and of being a Mum to a daughter with Down syndrome. This shot here has to be my favourite! You can find her @etst.
Charlotte Woodward via NDSS (TikTok)
One of the standout speakers from the World Down Syndrome Congress was Charlotte Woodward, who had everyone laughing, crying, and in general absolutely captivated. One thing she mentioned was her TikTok skills, which you can check out via the National (US) Down Syndrome Organisation’s profile - @ndssorg
Kelle Hampton (Instagram)
Noah’s Dad (Instagram)
From a Mum to a Dad – Noah’s Dad describes himself as “giving a window into what life is like raising a child born with Down syndrome”. From Donuts to Disneyland, this Dallas Dad is always a bright spot on your feed!
Me on the USA TV
By Carlos Biggemann
I want to share my last experience of being interviewed in two TV programs in the United States of America. I was amazed when I received two emails, one from Marc Hoberman and the other from Rico No Suave Show, both have talk shows in which people around the world are invited to be part of their programs.
“Life Stories with Marc Hoberman.” He interviews guests from all around the world to speak about their passions, struggles, perseverance, and secrets to their success.
Marc Hoberman is an educator, mentor, and author of multiple Amazon #1 best-selling books, including his newly released memoir. He interviewed me on Tuesday 13th February at
8:00am because of the time difference with Texas and Tennessee.
With Marc I have talked about my life as a photographer and about my Cumulus book. I told him that the book took four years in the making and how a group of Dunedin poets contributed writing beautiful poems about my sky’s photography.
The Rico No Suave Talk Show is all about bringing guests from all walks of life to the show to talk about their journey in life.
“Every Wednesday evening at 7 pm Rico No Suave interviews some of the greatest gems around the world,” says Rico’s website.
The interview was Thursday May 9th at 12:00pm, this is a television station in Chicago Illinois.
Being a guest on The Rico No Suave Show was an incredible experience to talk about something I really enjoyed, my photography, my career, my learning journey, and, of course, my recent Cumulus book launch.
After the interview I had the opportunity to meet Rico’s staff, they were amazing and fun. It was a big surprise to hear from friends and family living in the USA that were watching the program.
Thanks to both of them for having me in their shows and the privilege to share my life-story in such amazing programs.
If you want to buy a copy of those vibrant colours that only the sky can hold and a combination of poetry of Cumulus, I still have a few copies of my book.
It is available in more than 35 bookstores around the country. If you would like a copy and do not know where to find it, please let me know, I will send you the name of the closest bookstore, or I can send you a copy directly. Happy to sign the book if anyone would like too
You can watch both interviews on Youtube by searching:
Photographer Carlos Biggemann on Life Stories with Marc Hoberman or
The Rico No Suave Show featuring photographer Carlos Biggemann
The Brisbane World Down Syndrome Congress 2024
By Andrew Oswin - Feature Writer
The World Down Syndrome Congress was hosted this year in Brisbane, Australia where self-advocates with Down syndrome and delegates from forty seven countries from all over the world came together to share their perspectives, thoughts and ideas. This year’s theme was Together We Can: Diversity and Inclusion. The Congress took place at the Brisbane Convention and Exhibition Centre from 10th-12th July.
Before the congress began, the Self-Advocates came together for a Meet and Greet at The Southbank Beer Garden for nibbles and drinks and to meet and make new friends. Music got played during the afternoon and we also found a piece of paper under a bar stool, where everyone had to talk about themselves to another person. The next day, we came back together for a Self-Advocates Day for an openmic session to discuss issues that affect everyone in their everyday life and to make suggestions for how it can be improved. The Self-Advocates Day was only hosted for self advocates with disabilities. Parents were excluded from attending because the organisers wanted to hear what people with Down syndrome had to say. The Congress Opening Ceremony began with some Aboriginal dancers and a young man with a disability played the didgeridoo. Everyone had to stand for the flagbearers to come in carrying their national flags. The Opening Ceremony of the Congress was hosted by Claire Mitchell and Ruth Faragher who are two people with Down syndrome. They did a really great job. At the Congress we had some amazing keynote speakers who presented in the Great Hall. Dr Brian Skotko talked about the statistics of how pre-natal screenings of children are seeing fewer children born with Down syndrome in many countries, including New Zealand. Cindy Johns spoke about the life and work of the late Sir Robert Martin who campaigned for people with disabilities to have their rights heard,
and what life was like for him when he lived most of his early life in an institution. Charlotte Woodward, a young American woman with Down syndrome who has a degree in sociology, gave a really interesting presentation. She spoke about how she managed to recover from having a heart transplant and what she has achieved as an adult.
The breakout sessions were chaired by people with Down syndrome and they were supported by cochairs. There were nearly fifty different sessions that everyone was able to select from, including performances of musical items and dances in the Great Hall.
Among the break-out sessions hosted by NZ presenters were:
• Vincenzo Vaccarino – my life and my choice to create a good life!
• Erin Smith and Rochelle Waters - STRIVE: our journey as self-advocates to work together to have a national voice and become champions of rights.
• Zandra presented Career planning and bringing your skills to the workplace: a guide for job seekers and employers to support people with Down syndrome into the workplace.
• Margi Leech - Success in Education – NZ and Maths especially!
• Sarah Paterson-Hamlin – Democracy and Down Syndrome.
• Franco Vaccarino with Andrew Oswin - Selfadvocates with Down syndrome reflect on their role as co-designers and co-researchers on an inclusive research project.
• Andrew also co-presented Health equity findings from DSi’s global consultation with Nathan Rowe (Exeter, England), Programme Director – Down Syndrome International.
• Carlos Biggemann – How does it feel being a photographer?
• Katrina Sneath – My journey to independent travel.
• Luka Willems – YouTube – My Voice, When words fail me, YouTube Tells my story.
• Lily Mae Ivatt-Oakley – Hate to break it to you Mum.
• Maree Kirk – Inclusive Literacy Design – education to enhance literacy, communication, and social inclusion. Maree also presented Capability Transition Pathway – an approach to develop skills for independence when dealing with change through the school years.
• Molly Kate Dennis - this is me, a powerful dance performance piece.
• Lee and Noah Harper - Hogwarts in our home.
• Joseph Blake - Diving off the blacks, being a pioneer on the S18 swimming competition pathway.
• Gabrielle Salmon - Changing the perspective, together we can.
On the last day of the Congress there was a panel discussion with panellists from different countries around the world who reflected upon the issues that were raised at the Self Advocates Day. The panel was chaired by Professor Roy McConkey from Ulster, Ireland. Everyone took a turn speaking on the microphone that got handed to them and they managed to speak really well. The big message from this session was to assume the competence of the person with Down syndrome. Expect them to be able to do things. YES WE CAN!
At the closing ceremony Dr Alastair McEwin
AM, a long term disability advocate with a visual impairment, presented the closing speech and he talked about identifying people with disabilities. That night all of the delegates got dressed up in all of their finery for the Congress Dinner that took place in the Ballroom Suite, at the Brisbane Convention and Exhibition Centre. At the dinner we celebrated the achievements of leaders who received certificates from the Sherry Hogan Foundation, speeches were made, good food was eaten, we danced, and had photographs taken.
I would like to announce that the next Congress will take place in Buenos Aires, Argentina in 2027. Thank you, to the partnership sponsors Down Syndrome Australia and Down Syndrome International for hosting and organising the World Down Syndrome Congress, and also for their generous support and hospitality to all of the delegates who attended this worldwide congress. We were especially proud of the role Bridget Snedden played in the Congress as she is the President of DSi. I also would like to acknowledge the New Zealand Down Syndrome Association for their involvement in congress planning and for a contribution towards my ambassadorial role at the congress.
World Down Syndrome Congress 2024
Health and Down Syndrome –how does Aotearoa rank?
by Sarah Paterson-Hamlin
The health system in Aotearoa has come under a lot of scrutiny in recent years. The Pae Ora (Healthy Futures) process put the spotlight on District Health Boards (DHBs) and determined that fragmenting our healthcare system into 20 different organisations was creating inequities and cost overruns that could be avoided. Thus, Te Whatu Ora/Health NZ was born. For decades we have seen a mountain of evidence that Māori experience worse outcomes on every health metric apart from skin cancers in New Zealand, culminating in a life expectancy seven years shorter than non-Māori. A clear and shameful indictment of the systemic disadvantages faced by the indigenous population of Aotearoa. This in turn led to the short-lived Te Aka Whai Ora/Māori Health Authority. What impact its creation would have had, we will no longer be able to find out, its dissolution becoming official on 30 June 2024, only two years after its founding.
Perhaps at no other time in history was the performance of healthcare systems and health governance more on display than during the COVID-19 pandemic. New Zealand was held up as a bastion of effective response throughout this pandemic, ranking 3rd overall in terms of best responses globally, 5th in terms of fewest deaths per million, and 6th highest in terms of vaccination rates (Puerto Rico is on the top of that list with 100% - 100%!!!!!).
Now, thanks to Dr Brian Sktoko and his team of researchers working predominantly for “passion dollars”, we have a new way to assess our healthcare system – how well it’s working for people with Down syndrome. Skotko presented the findings at the recent World Down Syndrome Congress as representatives of most of the countries listed held their collective breath.
I won’t leave you in the suspense we experienced that day - New Zealand ranks 15th in the world when it comes to healthcare for people with Down syndrome. The best country in the world by this measure is the Netherlands, followed by Canada, Italy, the UK, and Switzerland. I know what some of you are thinking, and Australia comes in comfortably ahead of us at 9th. In bittersweet news, we fare even worse on the Global Health Index, coming in at 25th (Australia is in at 21).
It’s not ideal, clearly, and we’d love to see New Zealand not only in that top spot of course, but gaining it because of our successes rather than as a result of the failures of others. But to start with, let’s flip that idea of coming behind 14 other countries, and have a look at why we might be ahead of 180 other countries.
Skotko and his team’s survey identified that people with Down syndrome did not experience worse access to healthcare in general, and our Government did develop a plan for healthcare access for people with intellectual disability during COVID-19. Related to this, we were able to report that people with Down syndrome received the same access to care if they did contract COVID-19. When it comes to lifesaving heart surgery, we were able to report that most or all children with Down syndrome received access. Likewise, hearing tests and treatment for hearing loss, birth control, and free public healthcare in general were accessible to most or all people with Down syndrome. The survey also reported that New Zealand does have an established set of medical guidelines, written by the medical community, for children with Down syndrome. All big ticks in our favour.
So where did the survey find room for improvement? While the access to healthcare and a range of
treatments that are known to improve the quality of life of people with Down syndrome rates highly, the quality of the care received is reported as being lower for people with Down syndrome than the general population.
One contributing factor in this may be a term that came up in several of the health-related presentations at the Congress which is “diagnostic overshadowing”. This refers to when a person with a known disability or health condition has their symptoms attributed to that rather than having those symptoms investigated as a non-disabled person would. For example, if a person with Down syndrome came to their GP with heartburn, fatigue, and shortness of breath and the GP did not refer to a specialist or conduct any tests because “this is common with Down syndrome”, this would be diagnostic overshadowing, because if a person with no other known conditions presented with the same symptoms, they would be assessed for a heart problems.
It was certainly no shock to this former CEO (and dishwasher) of the UpsideDowns Education Trust, that we did not rate so highly on the question “What proportion of babies with Down syndrome receive speech therapy services by 2 years of age.” My word limit is nowhere near enough to say all I’d like about this one, so all I will do is encourage you to visit upsidedowns.co.nz if you aren’t already familiar with this kaupapa.
The proportion of people with Down syndrome who have access to mental health/behavioural services, if needed, is also at the very low end of the scale. We know our mental health workforce is facing critical shortages. The waitlists for diagnoses of things like ADHD or autism are years long and closed off entirely in some regions. Funding has been slashed for services such as youth mental health in-patient wards. Add into this diagnostic overshadowing and other forms of entrenched ableism, and the outlook is not currently positive for the Down syndrome community, including wider whānau and support networks.
When it comes to pre-natal testing and screening, the landscape of the survey is more complicated, at times appearing paradoxical. Aotearoa rates highly because of our universal access to free healthcare and birth control being available to women with Down syndrome and others, but our ranking slips because that very same access includes prenatal screening and NIPT, though the user-pays nature of the latter is also acknowledged by the survey. The connection lies in the final two questions of the Health section, which ask, “What proportion of parents feel pressured to terminate pregnancies prenatally diagnosed with Down syndrome” and “What proportion of expectant parents receive prenatal information about Down syndrome from their healthcare professional that is accurate, balanced, and up-to-date.”
As with any new technology, medical or otherwise,
it is not the existence of NIPT in and of itself that is causing distress for this community. Used differently, NIPT could be a reason for an increase in the number of babies born with Down syndrome. It is how that mechanism is being utilised, including the communication around it, which determines how this particular measure ranks New Zealand’s health landscape for people with Down syndrome.
The first wero or challenge to the medical profession that this survey offers, is how the various forms of pre-natal testing and screening are being presented in the first place. Some expectant parents aren’t made aware at all that these are an option, whereas others are led to believe they are a compulsory part of a pregnancy journey, even receiving procedures by default, without permission being sought. The manner in which screens and tests are presented differ for each individual situation, but it would be naïve to imagine that ethnicity, age, and socioeconomic background are not part of why some parents are encouraged and expected to undertake these procedures where others are left unaware of their existence.
This leads directly to the answer New Zealand provides in response to the question of pressure to terminate. Our response is “Most or all” – the most extreme end of the scale. Its mirror question reports that “None or few” – the other extreme –are receiving prenatal information that is accurate, balanced, and up-to-date.
This is not something that most readers of this publication need to be informed of. There are thousands of stories in this country alone of the trauma caused by healthcare professionals, often
forgiven but rarely forgotten. In some instances, entrenched ableism colours the most accurate of information. In others, wildly out of date expectations, half-recalled from a 1960s textbook, devastate a whānau that has every reason for hope and optimism.
Of course, there are those who have received carefully delivered, fact-checked, culturally appropriate, sensitive, and balanced diagnoses and information, and we salute those health professionals who do so, and those who are striving towards these goals.
The good news is, this journey is becoming easier thanks to an evidence-based guide prepared by some of the same researchers involved in the global survey, including the indefatigable Brian Skotko. [This guide is available here: chrome-extension:// efaidnbmnnnibpcajpcglclefindmkaj/https://dsaco. net/wp-content/uploads/Prenatal-Diagnosis-ofDown-Syndrome-How-Best-to-Deliver-the-News. pdf]
In short, Aotearoa has been found to have the medical infrastructure and the Government guidelines in place to make this one of the best places in the world in terms of the health and wellbeing of people with Down syndrome. The main barrier in our way it appears, is the ability of an already overstretched health workforce to take a step back and evaluate current habits within their own practice.
In the next CHAT 21, we’ll be looking at why New Zealand is ranked 24th for community inclusion.
What is Self-Directed Funding
Self-Directed Funding is one of the options available to implement positive life changes resulting from a needs assessment.
Self-Directed Funding means that you are in control of how, when and who delivers your support at home and in the community. The funding is managed by a ‘host’ – such as Manawanui – but it remains your money, so you make the decisions and buy the things you need.
This means you choose the support you need, employ the people you want and manage your available budget. Manawanui (as a ‘host’) are available whenever you need, and we provide as little or as much support as you’d like.
Benefits of Self-Directed Funding: It’s all about Choice and Control
• You choose who supports you –at the time and in a way that suits you
• Control in how and when you use your funding
• Contractor and item purchases are on your terms
• Greater care plan personalisation to suit your needs
Who can have Self-Directed Funding?
Anyone with a disability!
• Funding is not means tested so doesn’t affect any benefits
Fast Facts about Down Syndrome Regression Disorder
by Sarah Paterson-Hamlin
One of the highlights for many of us at the World Down Syndrome Congress, was a special extended session on Down Syndrome Regression Disorder at the Health Day prior to the opening of the official Congress. Some were all too familiar with this topic, others just getting to know a bit more about it, and others like me were total novices. Here are some fast facts about this condition, which we’re learning more about all the time.
The NZDSA is organising an online support group. If you would like to join please contact Zandra at neo@nzdsa.org.nz.
Symptoms can include…
• Unexpected social and emotional withdrawal
• Insomnia
• Significant loss of speech
• Mutism
• Onset of autistic behaviours
• Skill regression
• Catatonia
Treatment options currently being used/investigated
• Benzodiazepines
• Anti-depressants
• Anti-psychotics
• Electroconvulsive therapy (ECT)
• Immunotherapy
• Cholinergic agents
Timeline
• 1946 – Henry Rollin does a case study on ‘catatonic psychosis’ in people with Down syndrome, the first stage in identifying DSRD
• 2002-2019 – eight case studies published, taking us towards identification
• 2022 – expert consensus reached on the name, assessment, and diagnosis of DSRD
Core feature
• Rapid and significant decline in functional skills
Onset
• Most often around late adolescence
• Can be triggered by trauma
• Identified in children as young as 9
Quotations
• “Periodic reminder that when a [parent], especially of a child with complex needs, thinks her kid is sick, she is right.” – Matt Klein
• “The skills are not lost – they are just buried”. – Dr Cathy Franklin
• “We are a global group, we have to be” – Diane Draganovic
Film Crew Fun at the WDSC 2024
Kia ora everyone. My name is Luka Willems and I went to the WDSC2024 in Brisbane. That means World Down syndrome Congress 2024. There were people from 45 different countries and it was amazing.
I shared my presentation ‘YouTube my Voice’. People took photos of my slides to learn how to make cool YouTube clips and I loved making people laugh … and subscribe.
I also joined the Congress Film Crew which was made up of about 15 people with Down syndrome. I had some zoom training in New Zealand before the congress started. We learnt about technical things like the importance of good lighting and sound
and the best way to capture people talking. We practised how to ask interesting questions and interview people.
At the Congress we were split into 5 film crews and started to put all our new skills into action. We learnt to work as a team. We interviewed at morning tea time and lunch time when people were free to talk. That was hard because I wanted to eat too.
We took our camera, light stand, mic and film board and talked to people from all around the world including America, Scotland, Australia and New Zealand. Some people had Down syndrome and some did not. It was surprising how nervous people were to be in front of the camera. We tried to make people relaxed by asking simple questions like ‘ what is your name and where do you come from? We then asked questions like what are you enjoying at the conference and have you learnt something new?
Being on the film crew was just the best way to meet new people and learn interesting things. I made many new connections and I even got offered a job. They didn’t know I lived in New Zealand. I can use many of my new skills when I make new YouTube clips. Watch out .. Luka might be about and about to interview you - just kidding.
World Down Syndrome Congress 2024
How to Register for 111 TXT
Sue Dell from ADSA sent this through from NZ Police, and we thought it was such a helpful resource that this edition it is taking the place of our usual Easy Read Guide. Our Easy Read section will return in our Summer edition.
For now, 111 TXT is only for people who are deaf, hard of hearing or speech impaired.
You must register for it to work.
To register for 111 TXT you need to set up a ‘My Registration’ account. It’s how you enter your information into the Police application. Then in an emergency, they know you’re deaf, hard of hearing or speech impaired.
Important: This service is best accessed using a desktop computer or laptop with the latest version of the following web browsers:
• Microsoft Edge
• Google Chrome
• Safari (if using an Apple device)
• Mozilla Firefox
Using a mobile phone, tablet/iPad and a different web browser version may generate issues in the registration process.
If you are using a mobile device, make sure to use its native browser. For iPhone users, this would be Safari, and for Android users it will be Google Chrome.
It’s easy – 4 simple steps
Write down this authorisation code now: 111DFHItxt. On the Step 1 page, enter this authorisation code. Tick that you have read the terms and conditions and the privacy statement.
On the Step 2 page, enter your mobile phone number in the ‘username’ field, and your chosen password. The password should be easy to remember and something only you know. Select a secret question. This is something only you will know, like your cat’s name or the make of your car. This is to help you remember your password if you need to change your registration details later.
3.
4.
On the Step 3 page, put your name, birthday and email address (if you have one). Put in the mobile number you use most. If you want to register more than one phone, like your partner’s or your second mobile number, then you will need to repeat the process and register them separately. If you want to, you can put in the details for someone we can contact in an emergency if you can’t communicate for yourself.
On the Step 4 page, put your home address. If you want to, you can enter your work address.
You have now created your ‘My Registration’ account. That means you are registered. You will receive a text and email to confirm.
The last page will say ‘Congratulations!’.
Inclusive Research
By Franco Vaccarino and Zandra Vaccarino
The NZDSA’s STRIVE members have been involved in an inclusive research project in which they wanted to find out how people with Down syndrome were coping during the lockdowns. They worked with Zandra, Averil, and Franco as co-designers and coresearchers throughout the project. Ultimately, they were also co-authors in a top international peerreviewed academic journal. There are not many academic journal articles with learning disabled individuals as co-authors!
But what is inclusive research?
Traditionally, research about learning disabled individuals often placed them in a passive role, where they were research subjects who had little control or influence over the research process. Researchers held the expertise and power, making decisions about the research objectives, methods, and dissemination of findings. This in turn impacts on things like health advances for learning disabled people. The shift from traditional research methods to more inclusive research approaches represents a significant development in how research involving learning disabled people is conducted.
Inclusive research, a term coined by Jan Walmsley1, emphasises the active participation of learning
disabled individuals throughout the research process. Inclusive research involves the research participants not merely as subjects but as collaborators and cocreators of knowledge. This approach aligns with participatory and emancipatory research paradigms. In inclusive research, learning disabled individuals are engaged in various roles beyond that of passive respondents. They can take on roles such as coresearchers and contributors to the writing and dissemination of research findings2. This model acknowledges their expertise and perspectives, allowing them to shape the research questions, methods, and interpretations in ways that reflect their lived experiences and needs.
Some benefits of inclusive research include:
• empowering learning disabled individuals by validating their experiences and contributions
• enriching the research by incorporating diverse perspectives
• challenging traditional power imbalances and ensuring that research outcomes are more relevant and applicable to the lives of those who are directly affected
• incorporating participants as co-researchers who are actively involved in every phase of the research process - from deciding the research focus, creating the research questions, determining the
methodology and research design, to analysing, interpreting, and deriving conclusions from the collected data3
• representing a more equitable and respectful approach to studying learning disabled people, and
• fostering a collaborative environment where all participants have a stake in the research process and outcomes. This collaborative approach signifies an equal but different contribution from all involved.4
In the context of inclusive research, non-disabled researchers are encouraged to adopt an activist stance, supporting learning disabled individuals in their advocacy efforts and facilitating meaningful participation3. This role shift underscores the researchers’ responsibility to utilise their skills in ways that empower rather than overshadow the contributions of learning disabled co-researchers. Walmsley and Johnson2 offer a valuable framework for evaluating whether research adheres to the inclusive research paradigm. This framework provides a metric for ensuring that research is genuinely inclusive and collaborative:
1. The research problem should be one that is owned by learning disabled people, meaning that they have a significant stake in the issue
being studied. Ownership does not necessarily mean that learning disabled individuals must have initiated the research, but they should have a meaningful role in identifying and framing the research problem.
2. The research should further the interests of learning disabled people. Non-disabled researchers must align with the goals and needs of learning disabled people, advocating for their interests and working towards positive outcomes for them.
3. Research should be a collaborative effort, involving learning disabled people in the research process. This includes their participation in various stages of the research, from planning and data collection to analysis and dissemination.
4. Learning disabled people should have the ability to exert some control over the research process and its outcomes. This means they should have a say in how the research is conducted and how findings are used or reported.
5. The research question, process, and reports must be accessible to learning disabled people. This includes ensuring that all materials and communications related to the research are presented in a way that is understandable and usable by the participants.
In conclusion, inclusive research is a critical research approach that redefines the research process by:
• actively promoting the inclusion and well-being of learning disabled people
• exploring issues relevant to learning disabled people
• drawing directly on their experiences to shape both the research process and its outcomes
• recognising, fostering, and communicating the valuable contributions that learning disabled people make to research
• providing information and findings that disabled people can use to advocate for social change and improved policies5.
By involving learning disabled people in every stage of the research, from design to dissemination, inclusive research ensures that their perspectives and needs are adequately represented. This approach not only enhances the quality and relevance of research but also empowers disabled people, giving them a voice and agency in matters that directly affect their lives.
1. Walmsley, J. (2001) Normalisation, emancipatory research and inclusive research in learning disability. Disability & Society, 16(2), 187-205.
2. Walmsley, J., & Johnson, K. (2003). Inclusive research with people with learning disabilities: Past, present and futures. Jessica Kingsley Publishers.
3. Kiernan, C. (1999). Participation in research by people with learning disability: Origins and issues. British Journal of Learning Disabilities, 27(2), 43-47. https://doi.org/10.1111/j.1468-3156.1999. tb00084.x
4. Walmsley, J., Strnadová, I., & Johnson, K. (2018). The added value of inclusive research. Journal of Applied Research in Intellectual Disabilities, 31(5), 751-759. https://doi.org/10.1111/jar.12431
5. Strnadová, I., Dowse, L., & Watfern, C. (2020). Doing research inclusively: Guidelines for coproducing research with people with disability. DIIU UNSW Sydney.
Together We Can
Kia ora,
As we navigate through this quarter, it feels much like a rollercoaster—full of thrilling highs, challenging lows, and unexpected twists and turns. One of the standout highlights was the World Down Syndrome Congress (WDSC) 2024, which was outstanding. The event truly embodied the theme “Together We Can: Celebrating Diversity and Inclusion.” It was an inclusive conference in every sense, with individuals with Down syndrome playing key roles—from planning and promoting to presenting and chairing sessions. The closing presentation by people with Down syndrome was particularly inspiring. Thanks to Sarah, you can now experience some of the magic from the WDSC in this edition, as she shares some key takeaways. It was exciting to see so many New Zealanders attending and presenting at the WDSC. The NZDSA will be inviting these presenters to share their work at our Virtual Conference in October. Mark your calendars for October 3rd to 21st.
We extend our heartfelt thanks to Down Syndrome Australia, especially Rhonda Faragher, Angus Graham, Darryl Staff, and all the working committees and volunteers for their incredible efforts. Penny Robertson OAM, Co-Founder of Down Syndrome International, who has attended all 15 WDSCs, remarked at the closing ceremony that this was the best congress ever. We’re sure Argentina, the hosts of the next WDSC, will rise to the challenge of making the 16th Congress even better.
Another high was the launch of our new and improved NZDSA website. If you haven’t visited
yet, please do check it out and update your contact details if needed. A huge thank you to the Lindsay Foundation for funding this project, and to Jess Waters for her outstanding mahi. We appreciate the contributions of Abel, Dan, Sarah, Siobhan, STRIVE members and all the regional groups. We’re always eager to add more photos, stories, and information, so if you have anything to share, please forward it to Jess at kiaora@nzdsa.org.nz.
The launch of the video series complementing our NZDSA Employment Resource Toolkit was another highlight. This includes “A Guide to Hiring Someone with Down Syndrome” and the “Career Plan Workbook for Jobseekers with Down Syndrome and Their Whānau.” These resources were made possible thanks to Georgina and Kate from Kindred, the teams at Alvarium, Downlights, Nandos, Woop, Compass Group and Borderless Productions. If you haven’t seen these resources yet, I highly recommend checking them out on the NZDSA website. After all these wonderful highs and celebrations, it was very sobering to read two significant reports: Whanaketia – Through Pain and Trauma, From Darkness to Light, from the Royal Commission into Historical Abuse in State Care and in the Care of Faith-based Institutions, and the Report on Complaints to HDC about Residential Disability Support Services from the Health and Disability Commissioner.
We recognise that sharing personal trauma is an incredibly brave act, and we extend our heartfelt gratitude to all the courageous survivors who have shared their stories.
These reports contain distressing information and explicit descriptions of tūkino - abuse, harm and trauma. If reading these reports is triggering for you or someone in your close circle, support is available. The Survivor Experiences Service is available for people who were abused in State, faith-based, or other forms of care, as well as for a survivor’s whānau - you can contact them on 0800 456 090 or email contact@survivorexperiences.govt.nz The NZDSA is dedicated to advocating for continued improvements to prevent future abuse and is actively involved in advocacy, including our participation in Aotearoa Safeguarding Adults Alliance and VisAble and also collaborate with The Personal Advocacy and Safeguarding Adults Trust (PASAT).
• VisAble: A disabled person-led organisation that builds capacity and capability across disability, health, police, family violence, and sexual violence sectors in preventing and responding to abuse against people and adults at risk. VisAble works to ensure safe lives, free from harm, abuse, and violence, and that people are heard and supported.
• Personal Advocacy and Safeguarding Adults Trust (PASAT): Offers a range of services including ongoing and short-term advocacy, support for decision-making, discretionary trust
management, safeguarding adults from abuse (SAFA) response, and wellbeing support for survivors of abuse.
In light of recent reports and ongoing announcements about pauses, cuts, and changes within the disability sector, coupled with the increasing difficulty in accessing limited funding, the NZDSA must adapt and navigate these twists and turns effectively. Our priority is to continue advocating for our members while sustaining our core support and information services.
Collaboration has never been more vital. It is essential that we come together and advocate collectively for the needs of our community. As Andrew Oswin, a STEP-UP member highlighted during the closing panel discussion at the WDSC: “We need to work together because together we can”. I fully support Andrew’s call to action to unify our advocacy efforts and work together because together we can drive meaningful change and achieve our common goals.
Kia kaha Zandra
CDSA High Tea
Some of CDSA’s Mums and female caregivers had a fabulous time enjoying High Tea at Eliza’s Manor House; a lovely old Christchurch food haunt. Yummy food, great environment and fantastic company. What better way to spend a cold, wet Sunday afternoon.
Dr Maree Kirk In Canterbury
CDSA recently hosted Dr Maree Kirk of Supporting Teaching Practice for Students with Learning Disability and Down syndrome (STPDS). 36 teachers, representing 12 Canterbury schools, and 8 parents attended across two days; learning to enhance capability and wellbeing for children and young people with a learning disability and Down syndrome in the home, school and the community.
Ruakataur School Holiday Music Therapy Sessions
By Kathy Sadgrove
GreatM8’s is an adult mixed disability social group that has been running for around 10 years. The group was started by parents due to the need to fill a gap.
We meet once a fortnight and do different activities like 10 pin bowling, Lazer tag, healthy cooking, etc. Our base is the Anglican Church Hall in Kamo. We hire the hall at a good rate, which gives us a great space to be able to do group activities.
We have recently added music therapy sessions working in partnership with Raukatauri Music Therapy Trust who have a Northland Centre in Whangārei. With the group meeting in the evenings, it works for our group to hold these sessions in the school holidays. We see the benefits of music therapy for everyone, including parents, grandparents, and caregivers. The sessions are funded by Northland Down Syndrome. The participants pay $10 and this goes towards pizza after the session. Loads of fun for everyone. If our funding allows, we hope to have a group session during every school holiday.
Levi’s eating journey
by Victoria Coleman
Our son Levi (5½) was diagnosed with Down syndrome, and a rare bowel condition called Hirschsprung’s disease a few days after birth. He was helicoptered to Waikato hospital for multiple surgeries, and we returned to New Plymouth a month later with a long, unknown, and very unexpected journey ahead of us.
Although Levi was initially able to eat and drink small amounts orally, he failed to thrive, and he soon stopped eating completely. He nearly starved himself shortly after starting solids. No amount of different feeding techniques helped, so he had to have a PEG tube surgically fitted to his stomach so we could feed him blended foods.
Unbeknownst to us, this only made the pain worse for Levi over the next year as we fed him, and his little stomach could not empty. He was later diagnosed with another rare bowel condition called duodenal atresia. It was only through seeking private healthcare that we were able to finally receive this diagnosis, followed by corrective surgery shortly before Levi turned 4.
It was extremely stressful as Levi was unable to communicate to us the extreme pain he was in and for almost four years whilst he had an undiagnosed blockage in his small bowels that was missed by doctors. As his stomach was unable to empty properly, he never felt hungry, and he regularly vomited. Eating was associated with extreme discomfort and pain.
After Levi’s final surgery we found ourselves in the position of having a medically fit child that was unnecessarily dependent on a feeding tube due to psychological trauma. We searched for treatment within New Zealand and Australasia, only to find that there are no nearby medical facilities that assist with tube weaning highly complex children. The best option to help Levi learn to eat was the NoTube feeding school in Austria.
We knew that taking Levi to Austria for treatment would be a massive undertaking and we would need to fundraise to make it happen, so we kicked off a nationwide fundraising campaign with a Give-a-Little page, several Stuff articles, a NZ Woman’s Weekly
magazine article, a quiz night, and raffles with prizes kindly donated by generous local businesses and individuals.
We were blown away by the warm response and kindness once we shared our story and we were blessed to be successful in raising the required funds. Preparations were made to travel to Austria in June 2023.
The two-day journey from New Zealand through airports, flights, trains, and trams to the city of Graz, Austria was very exhausting and stressful with two young kids. It was all worth it though when we finally arrived and were introduced to ten other desperate families and their young children, some with disabilities or eating disorders who also required the same type of support and treatment.
Being with other families who had similar journeys and were facing similar challenges was a real blessing. The journey with a child who won’t or can’t eat can be extremely isolating, so as a group we were able to support each other through the process of helping our children learn to eat.
Under the close supervision of experienced doctors (we attended medical rounds every morning to review Levi’s health), we weaned Levi right back on his tube feeds so he could feel hunger for the first time in several years. He needed to be able to feel his hunger as this would eventually drive him to eat again but we also needed to support him through this process as it was very stressful for him. Suddenly he felt hungry, but he had no idea what to do with this new feeling.
The next few days with Levi receiving reduced nutrition via the tube was stressful for all of us but he was closely monitored to ensure he was ok to continue treatment and we spent our days playing with food, doing sensory activities, sharing meals with the other families, and encouraging our children to try food in any way possible.
Levi was still very afraid of food but eventually he began licking yoghurt from Mum’s fingers. He was still too afraid to allow the spoon anywhere near his mouth. Slowly, Levi tasted soft foods and on the sixth agonizing day, to our amazement, Levi finally began eating again and accepting the spoon. Over the next few days his interest in food and flavours grew and he learned how to satisfy his hunger by eating. Soon he was content with orally eating full
meals throughout the day, a feat we had previously thought would be impossible.
Once Levi began eating and realised that the associated pain of his medical conditions was gone there was no stopping him. We could not be prouder of him for overcoming his fear. He thoroughly enjoys his food these days and despite being non-verbal he very clearly lets us know when he is hungry!
Levi has had to work his way through the usual developmental stages of eating that he missed in the first few years of life, and this has had a positive flow on affect to his overall development. He is now able to participate in life and enjoy so many experiences he could not before.
Our family would like to express our gratitude to everyone who made it possible for Levi to attend NoTube eating school in Austria as this has been a life changing experience and has made Levi’s future so much brighter.
Levi is such a happy little boy now that he is out of pain and can eat and he can get on with enjoying his childhood and growing strong.
https://www.notube.com/en/eatingschool
IHC Library
In this issue we are focusing on some of IHC’s new books in the library as well as an article looking at ways to ensure good policy on health equity.
Raising capable kids: the 12 habits every parent needs regardless of their child’s label or challenge By Deborah Winking Summary: Many children are labelled ‘different’ - by doctors, psychologists, educators, or even peers- and as parents, this label can limit our hopes and expectations for them. Although the challenges that come with these labels are very real, and can be daunting, all of our children can be raised to be strong, capable, curious humans. This book brings together the 12 habits you need to set your child up for success regardless of diagnosis. Chapters range from defining what ‘capable’ means for your child and setting expectations for how others treat your child, to challenging your child in safe ways, and helping your child build a narrative of strength. With true stories that bring each habit to life, the neuroscience underpinning each habit, activities that encourage reflection and practical application, this is a gamechanging guide to understanding, supporting and celebrating your extraordinary child.
And some great news from the library - they now send return courier bags with what you borrow so you no longer have to pay to return items. Using the library is entirely free.
From the Hearts of Mums : Stories of love and inclusion in the world of Down syndrome by Julie Fisher Summary: When you enter the world of disability with your child or anyone you care for, it can be a scary time of the unknown. Your idea of what life was going to be like suddenly changes in an instant.
From the moment of discovery, even the language in which many doctors, nurses and practitioners use to tell you the news of being diagnosed with Down syndrome can be very cold and negative, which leaves you feeling lost, lonely and empty. During this time of uncertainty, connecting with other families and sharing each other’s journeys provides you with the love and support you need to get through these difficult and unexpected times. In this heartwarming book, Julie Fisher shares 13 deeply personal stories from mums around the world of their lives with loved ones who live with Down syndrome. You will discover how these mums navigated the path from diagnosis to present day, and how with love and guidance, this new world of disability has led them into a world of support from people they never imagined possible.
The brain forest by Sandhiya Menon Summary: Come explore The Brain Forest, which follows a mother and her son down the path of understanding the different ways brains can be. Brains that go fast, brains that go slow, brains that do what they’re told, brains that say NO! A heart-warming read that helps celebrate neurodiversity without dismissing its challenges, and centers around building a strengths-based society where everyone is valued for what they have to offer. This book helps start conversations and offers ideas to the reader about what they can do to create more inclusive environments.
The beautiful unwanted: Down syndrome in myth, memoir, and bioethics by Chris Kaposy
Summary: “Prenatal genetic testing has changed the circumstances under which parents choose what pregnancies to carry to term. Some have predicted that as a result of parents’ choices, people with Down syndrome will disappear from our communities in the near future. Chris Kaposy, a bioethicist who has a son with Down syndrome, reflects on parenting his son in the midst of this supposed disappearance. Writing from a pro-choice, disability-positive perspective, Kaposy presents some of the decades-old bioethical controversies involving children with Down syndrome, illustrating a prehistory of disappearance that has shaped current attitudes toward intellectual disability. The Beautiful Unwanted draws creatively upon the past and the present, upon myth, history, science, and personal stories, to present the world of families that include children with Down syndrome from a series of uncommon perspectives. We must recognize that we have some control over the future, Kaposy argues, and we must ask what kind of future we want for those who have
intellectual disabilities. The Beautiful Unwanted poses this question in a way that is engaging, often bewildering, and always fascinating.”-- Provided by publisher.
Featured article on Health equity.
Recruiting the Voices of Persons with Intellectual and Developmental Disabilities in Policy Development: Priorities for Health Equity Data by Gloria Krahn
From Intellectual and Developmental Disabilities 61 (5) 368-384: 2023
Abstract: Through focus groups, adults with intellectual and developmental disabilities (IDD) provided their priorities for health equity data, surveys, and information dissemination by U.S. federal agencies. Participants reported privacy concerns about sharing information, need for better data to promote access to quality health care and services, and need for information on social contexts that influence quality of life. Data should include functional limitations, health risks, and priorities for health care, and should support choice and selfdetermination. Adults with IDD believe parents or support persons do not always share their views, raising concerns about proxy reporting. Surveys and information need to use clear language, visual aids, and provide neutral supports. Information should be shared broadly, including to persons with IDD and families, health care professionals, and policy makers.
Please contact the IHC library team on 0800 442 442, email them at librarian@ihc.org.nz or visit the online catalogue at https://ihc.mykoha.co.nz/ You can watch their library videos at https://ihc. mykoha.co.nz/cgi-bin/koha/opac-main.pl
And a reminder their Free Book Scheme that gives a free book to families who have a family member aged 0-24 years who is autistic or who has an intellectual disability. Please check it out at https:// ihc.org.nz/ihc-library-free-book
NZDSA Committee
Kim Porthouse President 0800 693 724 president@nzdsa.org.nz
Zone 3 Representative Whanganui, Manawatū, Gisborne & Hawke’s Bay 0800 693 724
Shelley Waters Treasurer treasurer@nzdsa.org.nz
NZDSA Staff
Zandra Vaccarino
National Executive Officer 0800 693 724 neo@nzdsa.org.nz
Jess Waters Social Media & Information Officer hello@nzdsa.org.nz
Regional Liaison Officers
Corrie Paice Taranaki Community Liaison Officer 0800 693 724 taranakidownsyndrome@gmail.com
NZDSA Socials
Contact Directory
Bev Smith Zone 1 Representative Northland 0800 693 724 northland@nzdsa.org.nz
Deborah Jones Zone 4 Representative Wellington & Wairarapa 0800 693 724 zone4@nzdsa.org.nz
Averill Glew Self-Advocacy Portfolio averill@nzdsa.org.nz
Maia Faulkner Zone 1 Representative Auckland 0800 693 724 auckland@nzdsa.org.nz
Angelique van der Velden Zone 5 Representative Ashburton & all areas above 0800 693 724 zone5@nzdsa.org.nz
Gwen Matchitt Vice President
Zone 2 Representative Waikato, BOP & Taranaki 0800 693 724 zone2@nzdsa.org.nz
Averill Glew Zone 6 Representative All areas below Ashburton 0800 693 724 zone6@nzdsa.org.nz
Linda te Kaat
National Administrator 0800 693 724 na@nzdsa.org.nz
Siobhan Vaccarino Administration Support Officer hello@nzdsa.org.nz
Sarah Paterson-Hamlin CHAT21 Editor editor@nzdsa.org.nz
Daniel te Kaat Graphic Designer 021 22 333 93 daniel@slaughterhaus.co.nz
Kathryn Sadgrove Northland Coordinator 0800 693 724 ksadgrove@xtra.co.nz
The NZDSA has a Facebook page that serves as a community forum and notice board for relevant issues, events and stories. facebook.com/NZDSA
Follow us on Instagram to see what our communities are up to at nz_down_syndrome
Check out the NZDSA’s website at nzdsa.org.nz
Paula Beguely Auckland Community Liaison Officer 0800 693 724 clo@adsa.org.nz
Pauline Marshall Canterbury Community Liaison Officer 0800 693 724 cdsainc@gmail.com
NZDSA Membership
Membership is now done online. For all details please go to www.nzdsa.org.nz or for any queries please ring 0800 693 724. If you have not received an email to update your membership online please call the number above.
Donations
The NZDSA receives no Government funding and relies solely on donations and grant applications to keep us running. If you can make a donation big or small, please go to www.nzdsa.org.nz or ring 0800 693 724.
NZDSA AGM
The NZDSA AGM is on the 21st October 2024 at 7.30pm on Zoom. Here is the link, We will also share it via Enews, Facebook and the calendar on the NZDSA website.
Topic: NZDSA AGM
Date: 21st October 2024
Time: 07:30 PM Auckland, Wellington Meeting ID: 862 4558 8856
Passcode: 628365
NZDSA National Committee Vacancies
Reminder that we are calling for nominations to the NZDSA National Committee Vacancies
We have vacancies in Zone 2, Zone 3 and Zone 6. If you are an NZDSA parent or whānau member and interested in serving on the National Committee, please get in touch with me at neo@nzdsa.org.nz.
Tell us your story!
We are looking for adults with Down syndrome to tell their life stories! We will either publish these stories in a book or include them in CHAT21 or on the NZDSA’s website. We will be looking at different aspects of life stories, for example education, work, friends, love, leisure time, spirituality, inclusion, and dreams for the future. If you are interested in being part of this project, please contact Zandra at neo@nzdsa.org.nz and we will send you a list of questions that you could have a look at. We will organise a Zoom meeting where you can tell us your life story. You are welcome to bring a support buddy or whānau member to this Zoom session. Hope to hear from you soon!
Numicon Kits
We still have Numicon kits available if you are interested in loaning one for the school year. Numicon is a multi-sensory, structured maths programme. If you would like to know more about Numicon the website is http://www.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 $40.00 and the cost of returning the kit to the NZDSA.
If you would like to borrow a kit please contact Linda te Kaat at na@nzdsa.org.nz or 0800 693 724.
Thanks
Thanks to the following funders and sponsors who have made donations to the NZDSA this financial year:
• Lottery Grants Board
• COGS: Rodney/North Shore
• COGS: Hamilton
• COGS: Auckland City
• COGS: Coastal Otago
• COGS: Manukau
• COGS Southland
• COGS Manawatū/Horowhenua
• COGS Whangārei
• Grassroots Trust Central Ltd
• Holdsworth Charitable Trust
• Eastern & Central Community Trust
• Te Whatu Ora — Health NZ
• Ministry of Social Development
• Joyce Fisher Charitable Trust
• Pub Charity
• T G Macarthy Trust
• Lion Foundation
• Southern Stars
• Lindsay Foundation
Autumn, 2024.