New Zealand Down Syndrome Association (NZDSA)

Ageing and future aspirations: Navigating Ever-Changing Seas
2025-10-20 12:00 - 14:00 (Pacific/Auckland) | 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

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

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
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

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

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

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

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

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: 720444
Join zoom meeting

Creating, Sharing and Empowering
2025-10-11 16:00 - 16:30 | Zoom, New Zealand
11th October at 4pmMeeting ID: 861 7365 3928Passcode: 776200
Join zoom meeting

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

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.
Register here

Behind the Data: The Realities for People with Learning Disability in NZ
2025-10-08 19:30 - 21:00 | 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

Whaimana - The front door to learn about Supported Decision-Making
2025-10-08 12:00 - 14:00 | Zoom, New Zealand
8th October at 12pmFocus: Improved Supported Decision-Making-Improved Lives
Audience: All
This session will introduce you to Whaimana | Support My Decisions. Whaimana is a new website for decision-makers, supporters, and support agencies to learn about Supported Decision-Making. It has been built by the community in partnership with government, and is the first place to get started with supported decision-making.
Register here

Down Syndrome Regression Disorder (DSRD)
2025-10-07 19:30 - 21:00 | Zoom, New Zealand
7th October at 7.30pmFocus: Improved Health – Improved Lives
Audience: Parents, whānau and professionals
This presentation will cover what the current level of knowledge is on Down Syndrome Regression Disorder (DSRD), including what it is and what to do about it.
Register here

Celebrating Life with Down syndrome
2025-10-07 12:00 - 14:30 | Zoom, New Zealand
7th October at 12pmFocus: Improved Celebrations–Improved Lives
Audience: All
All people with Down syndrome have talents and treasures to share with their communities. In this presentation, Brian Skotko draws upon success stories in his co-authored national award-winning book, Common Threads: Celebrating Life with Down Syndrome, to enable parents, professionals, and friends to discover the potential of all people with Down syndrome
Register here

Improving Support and Improving Lives through Supported Decision-Making
2025-10-06 19:30 - 21:00 | Zoom, New Zealand
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.
Register here

Coming Full Circle
2025-10-06 12:00 - 14:00 | Zoom, New Zealand
6th October at 12pmFocus: Improved Futures-Improved Lives
Audience: Parents, whānau and professionals
Krissy will talk about her journey as a parent of not one but two sons with Down syndrome. Krissy’s story includes initial birth and diagnosis, to living with a medically fragile child and his influence after a brief time in this world. Krissy also talks about a career and how that lead her to raising her second son and seeing him grow into an independent young man living his best life. This is a story of hope, love and inclusion.
Register here

Achievements that Inspire - NZDSA Award Winners’ Panel
2025-10-04 16:30 - 18:30 | Zoom, New Zealand
4th October at 4.30pmMeeting ID: 880 8355 1384Passcode: 927886
Join Zoom Meeting

Supported Independence in Action: Spencer’s Everyday Life
2025-10-04 16:00 - 18:00 | Zoom, New Zealand
4th October at 4pmMeeting ID: 826 6258 2918Passcode: 992960
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Getting to the Good Life – The importance of having a Vision
2025-10-03 12:00 - 15:00 | Zoom, New Zealand
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
Register here

Online Support Meeting for Parents of Children with Regression Disorder
2025-09-17 19:30 - 20:30 | Zoom, New Zealand
17th September 2025 at 07:30 PM
Online Support Meeting for Parents of Children with Regression Disorder
The NZDSA is hosting another online support meeting for parents of children diagnosed with regression disorder. This will be an opportunity to connect, share experiences, and support one another.
Details:

Focus: Sharing and support (not for medical advice)

Join Zoom Meeting
https://us02web.zoom.us/j/81274363092?pwd=5IbvWi9MuKEShjdZ9oFwQKKaBpbeiC.1
Meeting ID: 812 7436 3092
Passcode: 330223
If you’re interested in joining, please contact Zandra at neo@nzdsa.org.nz.

STRIVE Afternoon Tea Club
2025-09-13 16:00 - 17:00 | Zoom, New Zealand
13th September – 4pm -5pm
A session run by people with Down syndrome for people with Down syndrome. All are welcome but focussed on +16 participants
This month we will be talking about the Refresh of the NZ Disability Strategy
Join Zoom Meeting
https://us02web.zoom.us/j/84168326399?pwd=aTnlHxwL0uarOaeFWLcFekn6oTXeuL.1
Meeting ID: 841 6832 6399
Passcode: 843724

NZDSA Disability Strategy Refresh
2025-09-11 19:30 - 21:30 | Zoom, New Zealand
NZDSA: Have Your Say on the Disability Strategy Refresh
Consultations are open on the New Zealand Disability Strategy 2026–2030. This is your chance to make sure the voices of people with Down syndrome, their whānau, and carers are heard.
NZDSA Feedback Events
Join our sessions to share your thoughts in a supportive environment:
Topic: Feedback Refresh of the NZ Disability Strategy
Date: Sep 11, 2025
Time:07:30 PM Auckland, Wellington
Join Zoom Meeting
https://us02web.zoom.us/j/89358630942?pwd=nDCiX8sgPobKjmGIwucgS6FrLAgr5r.1
Meeting ID: 893 5863 0942
Passcode: 078916
Read the draft:

Full Draft Strategy
Easy Read Document – Whaikaha link https://www.whaikaha.govt.nz/assets/NZ-Disability-Strategy-Public-Consultation/Whaikaha-AF2507003-NZDS-Public-Consultation-in-August-website-content-Easy-Read-24-07-25.pdf

Other events we encourage you to participate in are
Whaikaha consultation sessions
Access Matters Aotearoa Online Session

Date: Monday, 1 September 2025
Time: 12:00 PM – 2:00 PM (NZT)
Where: Online via Access Matters Aotearoa

Other Ways to Provide Feedback

Online via the Whaikaha consultation sessions
Word form via email
3-minute video via videomail.io
Request a group consultation toolkit

Deadline: Feedback closes Sunday, 28 September 2025.
Help shape a fairer and more inclusive Aotearoa for people with Down syndrome and their whānau.

Special Rigs for Special Kids
2025-08-31 08:30 - 17:00 | Edgar Centre, 116 Portsmouth Drive, Dunedin, New Zealand
Dear “Kids” Caregivers,
This years’ fun day is to be held on Sunday 31st August from 8.30am. The event is hosted by the local transport industry to provide children with special needs, a chance to get close to the big rigs they see on the roads.
The invitation is for a child with special needs and a supporting adult to come to the Edgar Centre where they will be taken for a ride in a truck, and then returned to the Edgar Centre for a barbeque lunch.
We would like to emphasise that the day is primarily for children with special needs and their immediate families. We would ask you to take this into consideration when organising your family group
Please Note:
· If your child is aged 7 or under please bring their car seat or booster seat with you on the day
· We require one caregiver per child to travel in the truck, as you know the individual needs of your child.
· Any special dietary requirements for your child must be provided by you on the day.
· St John Ambulance Service will be present.
· There is no need to respond to this invitation other than to turn up on the 31st of August from 8.30am
· There is no cost to you or your family for this event.
· Any other immediate family members will be able to travel in the bus.
· Any enquiries please contact Greg Inch 0274 358 508.

Yours sincerely
Greg Inch
Special Rigs for Special Kids President

ADSA Parents Dinner
2025-08-25 18:30 | 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.

Online Support Group Down Syndrome and Autism
2025-08-20 19:30 - 20:30 | Zoom, New Zealand
20th August at 7.30pm
Online Support Group Down Syndrome and Autism
Online
Join Zoom Meeting
https://us02web.zoom.us/j/85334030961?pwd=YI7jybWyEmTc4JLJoTDpMcVbqe81MN.1
Meeting ID: 853 3403 0961
Passcode: 406176

Strive Afternoon Tea Club
2025-08-09 16:00 - 17:00 | Zoom, New Zealand
9th August
STRIVE Afternoon Tea Club
4pm – 5pm
Online
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/82833353821?pwd=13JukSGYh4IEtsCyf1vHH6Unl6xUKj.1
Meeting ID: 828 3335 3821
Passcode: 788975

ADSA Success in Schools
2025-07-28 - 2025-07-29 | Zoom, New Zealand
Success in School is a 2-day workshop for educators of children with Down syndrome and other learning challenges.
NEXT WORKSHOP: 28 & 29 July 2025 – via Zoom
More Details to come

Whaimana: Support My Decision
2025-07-24 11:00 - 12:00 | Zoom, New Zealand
The NZDSA is excited to invite you to the launch of a valuable new digital resource – Whaimana: Support My Decision
The New Zealand Down Syndrome Association is delighted to have been part of the advisory group that supported the development of Whaimana – Support My Decisions, a new digital resource designed to promote and enable supported decision-making.
We are proud to have contributed to this important mahi and would like to congratulate everyone involved in bringing this valuable initiative to life. We’re excited about the positive impact this resource will have and believe it will be hugely beneficial for our community.
We warmly invite you to attend the official launch – full details are below.
When: 11am -12pm, Thursday 24 July 2025.
Where: Online via MS teams o in person
To register : Whaimana | Support My Decisions Launch
Whaimana – Support My Decisions is a website about supported decision-making. Supported decision-making helps people make their own choices about their lives, with the support of the people that they choose.
The website has helpful information for:

people making choices and decisions (decision-makers)
family, whānau, and friends who want to support people
paid supporters working for disabled people or older persons with reduced capacity
supporters who have may hold legal roles such as EPOA (Enduring Power of Attorney), Welfare Guardian or Property Manager
advocates (people who speak up for others).

The launch of Whaimana – Support My Decisions will be celebrated with Hon Louise Upston, Minister for Disability Issues, and Paula Tesoriero, CE of Whaikaha – Ministry of Disabled People, and advisory group members.
We will take a tour of the website, to show you information, resources, and links. This website was put together by Whaikaha – Ministry of Disabled People and an advisory group made up of people with dementia, disabled people, tāngata whaikaha Māori, and family/whānau who worked alongside non-government organisations and government agencies.
You can join online or in person. Numbers are limited in person so please RSVP via humanitix https://events.humanitix.com/whaimana-support-my-decisions-launch
NZSL interpreters and light catering will be provided.
