New Zealand Down Syndrome Association (NZDSA)

Behind the Data: The Realities for People with Learning Disability in NZ
2025-10-08 19:30 - 21:00 (Pacific/Auckland) | Zoom, New Zealand
8th October at 7.30pmFocus: Improved Data-Improved Lives
Audience: Parents, whānau and professionals
In 2023, IHC released a landmark report using New Zealand’s Integrated Data Infrastructure (IDI), a large government database holding information on nine million people. This research exposed stark inequities faced by people with intellectual disability, including much poorer health outcomes, higher rates of chronic illness, and a life expectancy up to 22 years shorter than the rest of the population. It also revealed that people with intellectual disability are over three times more likely to be victims of crime, and that families are disproportionately affected by child removals and family violence.
IHC have now updated this research with new data, allowing us to track whether outcomes for people with intellectual disability have improved since 2018. Alongside this, IHC has released The Cost of Exclusion, a new report showing the severe and ongoing economic disadvantage faced by people with intellectual disability and their families. They are three times more likely to live in material hardship, often go without essentials such as fresh food, heating, and transport, and children are far more likely to miss out on school and social activities because of cost.
This presentation will share key findings from these updated reports, highlight trends over time, and connect the data to the lived experiences of families. It will also discuss the action needed to create meaningful change and achieve equity for people with intellectual disability in Aotearoa New Zealand.
Register here

Keeping Children and Adolescents with Down Syndrome Healthy
2025-10-09 12:00 - 14:00 | Zoom, New Zealand
9th October at 12pmFocus: Improved Health-Improved Lives
Audience: All
In this presentation, Dr Brian Skotko reviews all of the questions and concerns that parents most often have about their sons and daughters with Down syndrome. He provides the answers and action steps, stemming from the latest clinical research on people with Down syndrome. Based on his clinical experience in the Down Syndrome Program at Massachusetts General Hospital, Dr Skotko makes sure that every parent can anticipate medical conditions so that the potentials of all people with Down syndrome are maximized.
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How to improve education and employment outcomes for Whaikaha
2025-10-09 19:30 - 21:00 | Zoom, New Zealand
9th October at 7.30pmFocus: Improved Education/Employment-Improved Lives
Audience: Parents, whānau and professionals
This presentation explores how education and employment systems can better support people with Down syndrome. Grant will highlight systemic barriers and share practical strategies to create equitable opportunities that value their strengths and contributions of the people we support. He will also spend time exploring ideas that have made a real difference for him and others in education and employment
Register here

Creating, Sharing and Empowering
2025-10-11 16:00 - 16:30 | Zoom, New Zealand
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 | Zoom, New Zealand
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 | Zoom, New Zealand
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.
Register here

Supporting people with learning difficulties experiencing grief
2025-10-13 19:30 - 21:00 | Zoom, New Zealand
13th October at 7.30pmFocus: Improved Wellbeing and Resilience-Improved Lives
Audience: All
Register here

Home & School: Joyful connections and a strong relationship
2025-10-14 12:00 - 14:00 | Zoom, New Zealand
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.
Register here

From Voices to Power: Making Accessibility a Political Priority
2025-10-14 19:30 - 21:00 | Zoom, New Zealand
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.
Register here

The IHC Library - Responding to Change
2025-10-15 12:00 - 14:00 | Zoom, New Zealand
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.
Register here

Babble Boot Camp
2025-10-15 19:30 - 21:00 | Zoom, New Zealand
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 | Zoom, New Zealand
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.
Register here

Ageing and future aspirations: Navigating Ever-Changing Seas
2025-10-20 12:00 - 14:00 | Zoom, New Zealand
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.
Register here

Improving Brain Health for people with Down syndrome
2025-10-20 19:30 - 21:00 | Zoom, New Zealand
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.
Register here

Building Capability Through Supported Independence
2025-10-21 12:00 - 14:00 | Zoom, New Zealand
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.
Register here

Empowering Self-determination with Volition
2025-10-21 19:30 - 21:00 | Zoom, New Zealand
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.
Register here

Care and Wellbeing Workshop
2025-10-29 19:00 - 20:30 | Zoom, New Zealand
Care Matters and the New Zealand Down Syndrome Association (NZDSA) are excited to bring the Down syndrome community a care and wellbeing workshop!
To mark the UN International Day of Care and Support, we invite parents, family, whānau, and aiga carers to a special workshop honouring your incredible mahi.
This free wellbeing workshop is designed as a calm, welcoming space where you can pause, connect, and focus on you. Together we’ll explore tools and ideas to strengthen resilience, nurture balance, and support you in the important role you play.
Date: Wednesday 29 October 2025
Time: 7.00-8.30pm

NZDSA AGM
2025-11-08 17:00 - 18:00 | Zoom, New Zealand
8th November at 5pm
NZDSA AGM
Join Zoom Meeting
https://us02web.zoom.us/j/82780897188?pwd=[REDACTED]
Meeting ID: 827 8089 7188
Passcode: [REDACTED]

ADSA Parents Dinner
2025-11-25 18:30 - 21:30 | The Good Home, 37 Normandy Road, Mt Eden, Auckland, New Zealand
This is a dinner for ADSA parents. Come along to connect with other families and meet friends – new and old. Share some delicious food, and plenty of laughs.
Come for a drink, dinner, dessert or everything – The GOOD HOME do fantastic food. (Please note: this meal is not funded by ADSA).
Please RSVP to Angela on 027 605 4496.

Youth Development Camp
2025-11-28 08:00 - 2025-11-30 17:00
28th -30th November 2025
Youth Development Camp
A camp for youth and adults with Down syndrome. It is an 18+ plus event
If you are interested, please contact Linda na@nzdsa.org.nz

Youth and Self-Advocates Registration, Release, Consent and Risk Management FormsFull Name*GenderMaleFemaleDate of BirthMobileEmail AddressName of Parent/Primary carerCarer MobileCarer Home PhoneCarer EmailEmergency contacts when you are at campContact NameRelation to youContact Home NumberContact Mobile NumberTo attend the Outdoor camp, you must be able to say YES to each highlighted question I am or my family is a member of the NZDSAYesNoI will be 18 or older by the date of the campYesNoI will complete all tasks before, during and after the campYesNoI will share the information and experience with othersYesNoI am willing to follow instructions so we all have a positive time and minimise risksYesNoI have experience with air travel and overnight stays at a hotel/campYesNoI am vaccinated and my COVID-19 vaccinations are current YesNoI am fit and will participate in walking and adventure activitiesYesNoI am willing to fully participate in the training YesNoI am independent and can take care of my personal needs/cares YesNoI regularly participate in a social/recreation/leadership group
(if there is one in your area)YesNoI have a support person who can assist me with post-course work. Their name isthey are myAcknowledgement of responsibilitiesTo attend the Outdoor camp, you must be able to say YES to each highlighted question I have read and understood the attached Traffic Light Behaviour - Code of Expected Behaviour - and I know what behaviour is expected of me YesNoI know that I will need to follow the health and safety guidelines provided so that I can keep safe and to help others to be safeYesNoRelease and ConsentI agree that my story and/or photographs can be published in the NZDSA’s CHAT21 JournalYesNoI agree that my story and photographs can be used to promote the NZDSA’s workshops or projectsYesNoI give permission for my e-mail address to be circulated to the other participants who attend the campYesNoI give permission for my home number to be circulated to the other participants who attend the campYesNoI give permission for my mobile number to be circulated to the other participants who attend the campYesNoRisk Management and Emergency ContactNamePhone and MobileEmailDoctorPhoneMobilePhysical description, please include the following:HeightWeightHair ColourEye ColourPlease attach a recent photographIf applicable: Let us know of any accessibility requirements: (Mobility, hearing, vision etc.)If applicable: Let us know of any specific support needs:Special Dietary Requirements: Please note all in this sectionYesNoDietary Requirement Details*What happens if you eat the wrong food?*What do you want us to do if you eat the wrong food?*Do you have any allergies, e.g. bee stings, penicillinYesNoAllergies Details*What happens if you have an allergic reaction?*What do you want us to do if you have an allergic reaction?*Do you have any medical conditions?YesNoMedical Conditions Details*Are you currently on medication?*Please provide full up-to-date details of what medication, dosage, when and who should administer? *Please indicate what we should do in the event of a medical issue. Call the doctor*Please read the following and then sign

In the event of an accident or illness, I authorise the obtaining of any medical assistance on my behalf as may be deemed necessary by the staff of NZDSA.

I understand and agree that I need to follow the Health and Safety Guidelines provided and that everyone attending is responsible for taking the necessary measures to ensure their own and others’ safety.

I accept that whilst the New Zealand Down Syndrome Association Incorporated (NZDSA) staff, volunteer support workers and other organisations will exercise due care and employ health and safety risk management techniques in both support and activities, it will not be liable for injury, damage or loss which a delegate may sustain to themselves or their property whilst attending the NZDSA Youth Development Camp.

I accept responsibility for my own actions and safety.

I understand that the NZDSA will not accept responsibility for loss or damage of personal property.

I have completed these forms to the best of my knowledge. I have read and understood the statement with regard to risk management and the privacy portion of this form. I have completed the criteria for attendance list. I agree to participate in the assigned tasks.

Privacy

The information provided will only be used for risk management purposes and for our records.
Your information will not be given to any other agency or person without your permission. Type Full Name to Digitally Sign*Submit

Strive Afternoon Tea Club
2025-12-06 16:00 - 17:00 | Zoom, New Zealand
6th December at 4pm – 5pm
STRIVE Afternoon Tea Club
A session run by people with Down syndrome for people with Down syndrome. All are welcome but focussed on +16 participants
Join Zoom Meeting
https://us02web.zoom.us/j/84924519282?pwd=[REDACTED]
Meeting ID: 849 2451 9282
Passcode: [REDACTED]

Strive Afternoon Tea Club
2026-02-14 16:00 - 17:00 | Zoom, New Zealand
STRIVE Afternoon Tea Club
Join us for our first STRIVE Afternoon Tea Club of the year — a fun social session run by people with Down syndrome, for people with Down syndrome.
This session is open to everyone, but especially for participants aged 16 and over.
Date: Saturday 14th February 2026
Time: 4pm -5pm
https://us02web.zoom.us/j/84054182031?pwd=[REDACTED]
Meeting ID: 840 5418 2031
Passcode: [REDACTED]

Regression Disorder Support Group for Parents and Whānau
2026-02-24 19:30 - 20:30 | Zoom, New Zealand
Join us for a special online gathering to connect with other parents and whānau who support people experiencing Regression Disorder.
This is a chance to share experiences, learn from one another, and be part of a supportive and understanding community.
Topic: Down Syndrome Regression Disorder (DSRD)
We will be viewing a recording of Dr Cathy Franklin’s presentation from the recent Virtual Conference.
This is an excellent opportunity to catch up if you missed the live session or to discuss the recording together.
About the Speaker:
Dr Cathy Franklin is the Director of the Queensland Centre of Excellence in Intellectual Disability and Autism Health at Mater Hospital, South Brisbane.
She also leads a Down syndrome clinic for adolescents and adults.
Tuesday 24 February 2026
7.30pm -8.30pm
Join Zoom Meeting – https://us02web.zoom.us/j/85698082370?pwd=[REDACTED]
Meeting ID: 856 9808 2370
Passcode: [REDACTED]

STRIVE Afternoon Tea Club
2026-03-14 16:00 - 17:00 | Zoom, New Zealand
Join us at the STRIVE Afternoon Tea Club—a fun social session run by people with Down syndrome, for people with Down syndrome.
Date: Saturday 14th March 2026
Time: 4pm -5pm
This session is open to everyone, but especially for participants aged 16 and over.
https://us02web.zoom.us/j/82442809092?pwd=[REDACTED]
Meeting ID: 824 4280 9092
Passcode: [REDACTED]

The Big Connect
2026-03-20 19:00 - 20:30 | Zoom, New Zealand
You’re invited to The Big Connect on the eve of World Down Syndrome Day!Our community, spread far and wide across Aotearoa, will come together to celebrate the incredible people with Down syndrome and their whānau as we kick off World Down Syndrome Day.
Join us:Friday 20 March 2026, 7.00pm – 8.30pmOnline via Zoom – https://us02web.zoom.us/j/89888084692…Meeting ID: 898 8808 4692Passcode: [REDACTED]
Or here is a link to our event:https://www.facebook.com/share/1GSEbsC1hP/
World Down Syndrome Day – Together Against Loneliness
Loneliness is not just a feeling – it’s a human rights issue. Research in New Zealand shows many people with learning disabilities experience social isolation. When rights are upheld – to live in the community, have relationships and be part of a family, go to an inclusive school and job, and take part in cultural life, sport, and play – loneliness is reduced and people are more able to experience a good life.
What to Expect at The Big Connect
At The Big Connect, you’ll hear from self-advocates, parents, and professionals about how real inclusion helps combat loneliness. You’ll have the opportunity to take the open mic and share your own stories, joining others in standing against loneliness. Connect with people from across Aotearoa as we launch WDSD.
Let’s do more than celebrate in 2026.Let’s strengthen advocacy.Let’s challenge exclusion.Let’s stand Together Against Loneliness.

World Down Syndrome Day!
2026-03-21

Down Syndrome and Autism Support Group for Parents & Whanau
2026-04-01 19:30 - 20:30 | Zoom, New Zealand
Join us for a special online session to recognise International World Autism Awareness Day on 2 April.
This year’s theme is “Autism and Humanity – Every Life Has Value.”
This session is for parents and whānau supporting people with Down syndrome and autism. It is an opportunity to connect, share experiences, learn from one another, and be part of a supportive and understanding space.
Wednesday 1 April 2026
7.30pm – 8.30pm
https://us02web.zoom.us/j/83004530090?pwd=[REDACTED]
Meeting ID: 830 0453 0090
Passcode: [REDACTED]
