New Zealand Down Syndrome Association (NZDSA)

Diving off the Blocks: Being a Pioneer on the S18 Swimming Competition Pathway
2024-10-12 16:30 - 17:30 (Pacific/Auckland) | Zoom, New Zealand
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Easy Tips for Home to Support Early Development Through Play and Connection
2024-10-14 19:30 - 21:30
It is commonly known that ‘early intervention’ is key in ensuring the best possible outcomes for children with Down syndrome. And while access to a comprehensive team of therapists to support this is ideal, it is often not an option in Aotearoa for all whānau. However, there is a lot that families can do without specialist equipment or training that will naturally support their toddlers’ development. Through small changes to daily routines and play, caregivers can lay a lifelong foundation of connection, curiosity and independence.

Clare Pudney

Clare Pudney is a Speech Language Therapist and Clinical Director of the Pudney Hub, an early intervention centre based in the Hawke’s Bay for children under 6. She has over 15 years experience, including time in early intervention services in Australia, establishment of disability services in Laos and specialist schools in New Zealand. Her passion is nurturing communication and connection in whatever form works best for children and their whānau. Her approach has a strong emphasis on play being the best vehicle for supporting the development of the whole child.

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Brain Train: SMART Actions That Might Boost Cognition and Prevent Alzheimer's disease in people with Down syndrome
2024-10-15 12:00 - 13:00
Two of the most common, yet challenging, questions that Dr Skotko is asked by caregivers: (1) How can you prevent Alzheimer’s disease in people with Down syndrome? and (2) How might we boost their cognition? While exciting research is unfolding in laboratories across the world, there are strategies that caregivers can take right now in respect to these two questions.
In this presentation, Dr Skotko reveals his recommendations.

Dr Brian Skotko

A Board-certified medical geneticist, Dr. Skotko is the Emma Campbell Endowed Chair on Down Syndrome at Massachusetts General Hospital. As the Director of the hospital’s Down Syndrome Program, he has dedicated his professional energies toward children with cognitive and development disabilities.
He co-authored the national award-winning books, Common Threads: Celebrating Life with Down Syndrome and Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. He is a graduate of Duke University, Harvard Medical School, and Harvard Kennedy School, and he is currently a Professor of Pediatrics at Harvard Medical School. Dr. Skotko is a leader on clinical and translational research about Down syndrome. He has been featured in The Wall Street Journal, The New York Times, The washington Post, The L.A. Times, NPR’s “On Point,” and ABC’s “Good Morning America.” Dr. Skotko has a sister with Down syndrome and serves on the Honorary Board of Directors for the Massachusetts Down Syndrome Congress.

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Empowering Support for Breastfeeding Mothers of Babies with Down Syndrome.
2024-10-16 12:00 - 13:00
The World Health Organization (WHO) recognises breastfeeding as a critical component of infant health and feeding, and this offers numerous benefits to babies, including those with Down syndrome (World Health Organization, 2019). This presentation examines the evidence supporting the unique advantages of breastfeeding for infants with Down syndrome and its potential to optimise their health outcomes. Research indicates that breastfeeding can play a crucial role in supporting the health and development of babies with Down syndrome

Heather Miller

Heather Miller has worked in intellectual disability health for over 20 years and is a registered nurse specialising in intellectual disability nursing, her initial nursing qualification. Her experience includes community learning disability nursing in the UK, medical undergraduate teaching in developmental disability health, content contributor in post graduate nurse education on managing the heath needs of people intellectual disability, and disability case management in the non-government sector. She currently works as a disability practice nurse in general practice. Heather holds a Certificate IV in Breastfeeding Education (Community) and has been a breastfeeding educator with the Australian Breastfeeding Association for over 15 years. She provides education and support to expectant mothers, and mothers who are breastfeeding their baby with Down syndrome, health professionals and is a disability resource breastfeeding educator on breastfeeding and Down syndrome at ABA.
Her most rewarding job however is being mum to her nine year old son who has Down syndrome, teaching her more than anything she has learnt in her career and training!

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Changing the Perspective - Together We Can
2024-10-16 19:30 - 20:30
Gabrielle: ”What do you see when you look at me?” “I bet you see my disability. yet when I look at you I’m not looking for your disability because everyone has them.” “What you cannot see are my talents.” It’s time to change the erspective and together we can do just that. Molly “Guess what?” ” I have a superpower. Can you guess what it is?” “Don’t worry if you can’t because I’m going to tell you.” “My superpower is DOWN SYNDROME” Did you know that I can do everything that I want? And, not only that but people with Down syndromehave specific qualities that make them excellent employees.

Gabrielle Salmon

Gabrielle Salmon is a young woman living a very busy, fulfilling and purposeful existence. Gabrielle would like to share a few aspects of her life and encourage us to think about how diverse we all are, we all are different, we all have talents and we all need to be valued. Gabrielle has worked hard to achieve independence and contribute positively to society. She acknowledges the importance of the support network that has allowed her to become who she is today. Through her dedication to be prepared to speak publicly she brings passion about sharing her journey to inspire others to recognise and support diversity. Her dedication to spread this message reflects her commitment to fostering understanding and appreciation in our communities.

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50 years of Music Therapy in Aotearoa
2024-10-17 12:00 - 13:00
Music therapy has been transforming the lives of disabled people and those with mental health conditions in Aotearoa for 50 years this year.
To mark the occasion, Registered Music Therapists from across the motu and beyond Aotearoa are converging on Wellington in September for a conference to share their insights and inspirations. Sarah works at Raukatauri Music Therapy Trust who operate New Zealand’s only dedicated music therapy centres and will be bringing up highlights from the conference and insights into how music therapy can support the development and wellbeing of people with Down syndrome.

Dr Sarah Paterson-Hamlin

Dr. Sarah Paterson-Hamlin is the Editor of CHAT 21, the NZDSA’s quarterly publication. A published poet specializing in political poetry, she also serves as the Funding Coordinator for the Raukatauri Music Therapy Trust, where she helps secure resources for music therapy programs

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Volition and Supported Decision Making
2024-10-17 19:30 - 20:30
Volition is on a mission to empower everyone to be a decision-maker in their own lives. It’s a human right! ​Volition champions supported decision making. This presentation will include an introduction to the principles of Supported Decision Making, then take a closer look at Volition, a new app to support Decision Makers and Supporters to collaborate in decision-making and care with confidence

Erika Butters

Erika Butters is the Founder of Volition, and is committed to ensuring everyone has smart and simple tools for decision making and self determination. She has a background in disability advocacy and supported decision making, and lives and works in Wellington.

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STRIVE: our journey as self-advocates to work together to have a national voice and become champions of rights
2024-10-18

My life, my choice to create a good life
2024-10-19

Hate to break it to You Mum
2024-10-19

This is me
2024-10-21 19:30 - 21:30
This is me - Molly KateID: 862 4558 8856Passcode: 628 365
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Getting to the Good Life – The importance of having a Vision
2025-10-03 12:00 - 15:00
3rd October at 12pmFocus: Improved Futures-Improved Lives
Audience: All

It is your North Star
Gives power and strength when things go wrong

Soon after his birth, Garry and Bridget were determined to create a life for Alex that would follow the same path as his siblings. They wanted him to have a strong sense of belonging in his local neighbourhood. That he would be known and cared about because he contributed to community life. Alex would be educated with the local children, work, and eventually live in his own home. Today Alex has his own house and lives his life on his terms. Bridget understands what it takes for parents to create a vision for the future, plan for that future, and then make it happen for their son or daughter with Down syndrome. It takes a very long time, and the decisions made 30 years ago are being lived out today. Alex lives a good life because of the vision we held for him; he now has his own vision for his own future.
“A vision that clearly identifies in your mind your child’s rightful place in the world is essential to the pursuit of an inclusive life; to a good life in community” Quote: Bruce Uditski
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Achievements that Inspire - NZDSA Award Winners’ Panel
2025-10-04 16:30 - 18:30
4th October at 4.30pmMeeting ID: 880 8355 1384Passcode: [REDACTED]
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Improving Support and Improving Lives through Supported Decision-Making
2025-10-06 19:30 - 21:00
6th October at 7.30pmFocus: Improved Supported Decision-Making-Improved Lives
Audience: All
Supported decision-making is central to people having the support and lives they want, need, and deserve. In this presentation, Brigit will talk about what supported decision-making is and why it is such an important part of the United Nations Convention on the Rights of Persons with Disabilities. She will also tell us how we can all be involved in supported decision-making. Having a better understanding of what supported decision-making is, and how to put it into practice, will mean that everyone has more choice and control over their own decisions and lives.
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Creating, Sharing and Empowering
2025-10-11 16:00 - 16:30
11th October at 4pmMeeting ID: 861 7365 3928Passcode: [REDACTED]
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STRIVE and STEP-UP: Shaping Futures Through Advocacy
2025-10-11 16:30 - 17:30
11th October at 4.30pmMeeting ID: 883 0045 4710Passcode: [REDACTED]
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Books Beyond Barriers and more!
2025-10-13 12:00 - 14:00
13th October at 12pmFocus: Improved Information-Improved Lives
Audience: Parents, whānau and professionals
Krissy is the National Librarian at the CCS Disability Action Library and Information Service. Krissy will talk about her passion in sharing information to empower people. Krissy will share the different accessible forms of information and talk about sharing information through community radio and podcast.
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Supporting people with learning difficulties experiencing grief
2025-10-13 19:30 - 21:00
13th October at 7.30pmFocus: Improved Wellbeing and Resilience-Improved Lives
Audience: All
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Home & School: Joyful connections and a strong relationship
2025-10-14 12:00 - 14:00
14th October at 12pmFocus: Improved Education–Improved Lives
Audience: Parents, whānau and professionals
I’m presenting in my capacity as a parent, not in a professional capacity. My daughter Charlotte is in Year 4 at our local primary school. I’ll be sharing with you about this journey so far and how we work together with our school to ensure that we have a strong relationship. It’s a long-term relationship, and it’s not always smooth – but I’ve learned some important things along the way.
I’ll talk about how we communicate, plan and solve problems together, and how our focus has changed over the last 4 years.
This is suitable for anyone who is starting school in the next few years or who has already started primary school.
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From Voices to Power: Making Accessibility a Political Priority
2025-10-14 19:30 - 21:00
14th October at 7.30pmFocus: Improved Advocacy-Improved Lives
Audience: Parents, whānau and professionals
How do we transform lived experience into political influence? In her talk, Juliana Carvalho will share the story and strategy behind the Access Matters campaign, a grassroots movement working to make accessibility a political priority in Aotearoa New Zealand. Drawing on lessons from collective action, community organising, and coalition-building, Juliana will explore how diverse voices can be amplified into a united call for change. She will highlight practical steps the campaign is taking to engage policymakers, mobilise supporters, and shift public narratives—demonstrating the power of collaboration to create a more inclusive society for all.
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The IHC Library - Responding to Change
2025-10-15 12:00 - 14:00
15th October at 12pmFocus: Improved Information-Improved Lives
Audience: Parents, whānau and professionals
A brief look at what the IHC Library is and how it can support parents, caregivers and anyone with an interest in intellectual disability.
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Babble Boot Camp
2025-10-15 19:30 - 21:00
15th October at 7.30pmFocus: Improved Communications-Improved Lives
Audience: Parents, whānau and professionals
This presentation shares a pilot study of Babble Boot Camp, a caregiver-led programme that supports early speech and language development in infants with Down syndrome, offering insights into proactive strategies for lifelong communication
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Health equity for people with Down syndrome and intellectual disabilities
2025-10-16 19:30 - 21:00
16th October at 7.30pmFocus: Improved Health-Improved Lives
Audience: Parents, whānau and professionals
This talk will cover the unfair health outcomes faced by people with Down syndrome and intellectual disabilities, including findings from Down Syndrome International’s ‘Our Say in Our Health’ report. We will also discuss work happening on this topic from the World Health Organization, and actions that we can all take to make things better.
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Ageing and future aspirations: Navigating Ever-Changing Seas
2025-10-20 12:00 - 14:00
20th October at 12pmFocus: Improved Aging-Improved Lives
Audience: Parents, whānau and professionals
Navigating Ever-Changing Seas is a new model for understanding the experiences of ageing people with intellectual (learning) disabilities and the family/whānau who support them. These relationships can be complex and change over time, often involving multiple generations. Everyone’s experience is shaped by their identity, relationships, past and present support, and the wider community and social context. Understanding these perspectives helps guide future planning, support practices, service development, research, and inclusive policies.
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Improving Brain Health for people with Down syndrome
2025-10-20 19:30 - 21:00
20th October at 7.30pmFocus: Improved Aging-Improved Lives
Audience: Parents, whānau and professionals
People with Down syndrome are at increased risk of Alzheimer’s disease. This talk will discuss common symptoms of dementia, and how medical specialists can assess memory and brain health. It will cover current and emerging treatments. Lastly, it will cover how to optimise brain health across all life stages.
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Building Capability Through Supported Independence
2025-10-21 12:00 - 14:00
21st October at 12pmFocus: Improved Wellbeing and Resilience–Improved Lives
Audience: Parents, whānau and professionals
Dr Maree Kirk’s presentation situates the World Down Syndrome 2025 theme — Improved Support, Improved Lives — within the New Zealand context. Drawing on her PhD research, she developed the theory of wellbeing for children with a disability, which identified three principles of acceptance, recognition, and supported independence. She highlights how capability must be intentionally built across home, school, and community. Supported independence is not about doing everything alone, but about balancing autonomy and support to enable full participation in education, family, and community life. Maree also shares insights from recent Ministry of Education pilot projects and the national Network of Expertise (NEX) contract, alongside findings from her action research on the Transition Capability Pathway. Her presentation shows how family-led, holistic, and rights-based approaches to support can transform independence and inclusion for learners with Down syndrome.
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Empowering Self-determination with Volition
2025-10-21 19:30 - 21:00
21st October at 7.30pmFocus: Improved Supported Decision-Making-Improved Lives
Audience: All
Having choice and control in your life starts with knowing what is important to you and then telling others. This session will walk through Volition, a new app that empowers Decision Makers to work with their Supporters to understand and communicate the things that matter to them.
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