New Zealand Down Syndrome Association (NZDSA)

Care Matters & NZDSA Future Planning Workshop 3
2025-04-30 19:00 - 20:30 (Pacific/Auckland) | Zoom, New Zealand
Care Matters and the New Zealand Down Syndrome Association (NZDSA) are excited to collaborate and bring you a free four-part online workshop series designed to empower whānau in planning for the future. Rooted in the Enabling Good Lives (EGL) principles, these sessions provide practical tools, insights, and connections to help you navigate the journey ahead.
Attend all four for the full experience or join individual sessions as they suit you!
These sessions, led by facilitators with lived experience, will cover:
2 April – Understanding how EGL principles support future planning
16 April – Discovering ways to envision the future for your loved one
30 April – Turning your vision into actionable steps
14 May – Developing skills to overcome challenges along the way
These workshops have been designed specifically for parents and whānau who have family members with Down syndrome
Register here: https://carematters.org.nz/events/turning-your-vision-into-action/

Autism Awareness Month Online Support Session
2025-04-29 19:30 - 20:30 | Zoom, New Zealand
This April, the New Zealand Down Syndrome Association (NZDSA) is proud to support Autism Awareness Month and raise awareness of the co-occurrence of Down syndrome and autism. April begins with World Autism Awareness Day on April 2nd, marking the 18th annual United Nations-recognised day of advocacy and understanding.
This year’s theme, “Celebrate Differences,” highlights the importance of embracing neurodiversity and ensuring equitable support for all.
NZDSA Online Support Session for Parents & Whānau
To celebrate Autism Awareness Month, NZDSA is hosting an online support session for parents and whānau of people with Down syndrome and Autism.. We’re thrilled to welcome Geraldine Whatnell, Nurse Practitioner and Director of Down Right Healthcare, who will answer questions and share valuable insights.
Did you know? Research suggests that a significant percentage of people with Down syndrome also have autism (with estimates ranging from 16-18% or even higher. Navigating a dual diagnosis can be complex, and we’re here to support families on this journey.
Date: 29 April 2025
Time: 7.30pm -8.30pm
Where: Zoom
Meeting ID: 821 3899 8023
Passcode: [REDACTED]

Care Matters & NZDSA Future Planning Workshop 2
2025-04-16 19:00 - 20:30 | Zoom, New Zealand
Care Matters and the New Zealand Down Syndrome Association (NZDSA) are excited to collaborate and bring you a free four-part online workshop series designed to empower whānau in planning for the future. Rooted in the Enabling Good Lives (EGL) principles, these sessions provide practical tools, insights, and connections to help you navigate the journey ahead.
Attend all four for the full experience or join individual sessions as they suit you!
These sessions, led by facilitators with lived experience, will cover:
2 April – Understanding how EGL principles support future planning
16 April – Discovering ways to envision the future for your loved one
30 April – Turning your vision into actionable steps
14 May – Developing skills to overcome challenges along the way
These workshops have been designed specifically for parents and whānau who have family members with Down syndrome
Register here: https://carematters.org.nz/events/vision-planning/

STRIVE Afternoon Tea Club
2025-04-12 16:00 - 17:00 | Zoom, New Zealand
Join us at the 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.
Topic: STRIVE Afternoon Tea Club
Date: 12 April 2025
Time: 04:00 PM Auckland, Wellington
Zoom Meeting – https://us02web.zoom.us/j/84558163827?pwd=[REDACTED]
Meeting ID: 845 5816 3827
Passcode: [REDACTED]
This time we will talk about what you did for World Down Syndrome Day

CDSA - Navigating the transition from school into employment
2025-04-09 19:00 - 20:30 | The Village Presbyterian Church & Community Centre, 460 Papanui Road, 460 Papanui Road, Christchurch, New Zealand

Care Matters & NZDSA Future Planning Workshop 1
2025-04-02 19:00 - 20:30 | Zoom, New Zealand

ADSA Big Picnic
2025-03-23 11:00 - 14:30 | Papatoetoe East Primary, 138 Tui Road, Auckland, New Zealand

ABCD Group Lido Get Together
2025-03-22 11:00 - 14:00 | Lido Aquatic Centre, Park Road, Palmerston North, New Zealand

The Big Connect
2025-03-21 19:00 - 21:00 | Zoom, New Zealand
Join us online on Friday, March 21, 2025, at 7:00 PM for The Big Connect as we come together to celebrate World Down Syndrome Day!
This year, Down syndrome communities worldwide are calling on governments to improve support systems for people with Down syndrome and their families. Now is the time to connect, advocate, and take action!
Why Support MattersSupport isn’t just helpful—it’s a human right.• People with Down syndrome deserve the opportunity to live, thrive, and fully participate in their communities.• Families need the right resources to provide meaningful support to their loved ones.• The right support at the right time ensures dignity, choice, and independence.
What to Expect at The Big ConnectExpert Panel & Discussion – Hear from a diverse group of experts and leaders as they discuss what a strong, inclusive support system should look like.
The panel experts include:• Prudence Walker, Kaihautū Tika Hauātanga Disability Rights Commissioner• Bridget Snedden President of Down Syndrome International• Paul Gibson, Chief Executive, VisAble former commissioner on the Abuse in Care Inquiry. As the first Human Rights Commissioner with responsibility for disability rights• Loren Savage, Senior Advisor to the Chief Executive, Whaikaha, Ministry of Disabled People• Juliana Carvalho, Project Manager, Access Matters Aotearoa Trust• Shara Turner, Advocate, IHC New Zealand• Trish Grant, Inclusive Education Lead, IHC• Dr Maree Kirk, Director of Networks of Expertise– Supporting Teachers Practice• Jennifer Del Bel, Managing Director, Downlights• Grant Cleland, Managing Director, Creative Solutions• Andrew Oswin, STEP-UP member and Ambassador on Down Syndrome International,• Erin Smith, Abigail Knight, Vinnie Vaccarino, Rochelle Waters, Peter Rees, Mohit Chand, all STRIVE members• Laurie Hilsgen, CEO, Carers New Zealand• Associate Professor Brigit Mirfin-Veitch, Kaiwhakahaere – Director, Donald Beasley Institute
Community Voices – Share your insights, learn from others, and help shape the conversation.
Although our community is spread across the country, The Big Connect is our chance to unite, celebrate, and make our voices heard.
Together, we can send a powerful message to our government about real actions needed to improve support for people with Down syndrome.
Let’s make a difference! Mark your calendar and join us at The Big Connect.

ADSA Rock your Socks
2025-03-21

ASID Aotearoa NZ Conference
2025-03-17 09:00 - 16:30 | Harbourside Function Centre, 4 Taranaki Street, Wellington, New Zealand
ASID Aotearoa NZ conference – Data, Design and Delivery: Research to support people with a learning (intellectual) disability – Australasian Society for Intellectual Disability
Monday 17 March 2025
9am – 4:40pm NZDT
In person: Harbourside Function Venue (Shed 22), Wellington
This conference will be of interest to:

People with lived experience of learning (intellectual) disability
Whānau and family members
Researchers (including student researchers)
Service providers
Health and disability professionals
Government officials

Disability Support Services Community Consultation
2025-03-12 19:30 - 21:30 | Zoom, New Zealand
The Disability Support Services (DSS) community consultation is open and will run through 24 March 2025. This consultation builds upon the feedback DSS received from their 2024 survey and submissions.
In alignment with World Down Syndrome Day this year, the NZDSA calls on all governments to Improve Our Support Systems. We strongly encourage you to take part in the consultation process to help shape future support frameworks.
The NZDSA will also host two online forums to provide a space for our community to come together and share their insights. These contributions will play a key role in shaping the NZDSA’s official response to the consultation.
Topic: NZDSA – DSS Consultation
Date: 12 March 2025
Time: 07:30 PM Auckland, Wellington
Meeting ID: 846 4073 2262
Passcode: [REDACTED]
Read here for all the details on DSS Consultation
https://www.disabilitysupport.govt.nz/consultation

Youth Development Camp
2024-11-22 08:00 - 2024-11-24 17:00
NZDSA Youth Development Camp. More details to come.

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

National Achievement Awards
2024-11-14 | Government House, 1 Rugby Street, Wellington, New Zealand
More details to come.

This is me
2024-10-21 19:30 - 21:30 | Zoom, New Zealand
This is me - Molly KateID: 862 4558 8856Passcode: 628 365
Join Zoom Meeting

NZDSA AGM via Zoom
2024-10-21
Save the Date! Details and zoom link to come.

Hate to break it to You Mum
2024-10-19 | Zoom, New Zealand
Register Here

My life, my choice to create a good life
2024-10-19 | Zoom, New Zealand

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

Volition and Supported Decision Making
2024-10-17 19:30 - 20:30 | Zoom, New Zealand
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.

Register Here

50 years of Music Therapy in Aotearoa
2024-10-17 12:00 - 13:00 | Zoom, New Zealand
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

Register Here

Changing the Perspective - Together We Can
2024-10-16 19:30 - 20:30 | Zoom, New Zealand
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.

Register Here

Empowering Support for Breastfeeding Mothers of Babies with Down Syndrome.
2024-10-16 12:00 - 13:00 | Zoom, New Zealand
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!

Register here

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 | Zoom, New Zealand
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.

Register Here

Easy Tips for Home to Support Early Development Through Play and Connection
2024-10-14 19:30 - 21:30 | Zoom, New Zealand
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.

Register here

Diving off the Blocks: Being a Pioneer on the S18 Swimming Competition Pathway
2024-10-12 16:30 - 17:30 | Zoom, New Zealand

You Tube – My Voice. When Words Fail Me, YouTube Tells My Story
2024-10-12 16:00 - 17:00 | Zoom, New Zealand

Inclusive Literacy Design – Education to Enhance Literacy, Communication, and Social Inclusion
2024-10-10 19:30 - 20:30 | Zoom, New Zealand
It’s crucial to consider how children and young people develop their ability to express themselves through spoken, visual, and written language.
Teachers and families can aid in this development by using a range of tools. Inclusive literacy design helps students develop their literacy skills across all subjects. It aims to improve their understanding, competency, communication, and comprehension. By doing so, students can communicate independently, engage, and learn within the curriculum and community, and participate fully in their own unique way. By using the four-resources model and multisensory approach, students can create meaning within texts and produce their own texts. Teachers and families can aid in this development by using a range of tools such as ICT, literacy resources, and communication strategies
Inclusive Literacy Design Packs are developed as part of workshops. These packs are the foundation to help students learn strategies that they can use throughout the school years, later in tertiary education or work opportunities. The evidence-based approach is enjoyable and popular with students, teachers, and families.

Dr Maree Kirk

Dr Maree Kirk is the director of Networks of Expertise – Supporting Teachers Practice for learning disability and Down syndrome. The first Network of expertise to be awarded a Ministry contract for the Professional Learning and Development of teachers and kaiako working with Down syndrome and those with learning disability students. Dr Maree Kirk is the Developer and National Director of Supporting Teaching Practice for students with learning disability and Down syndrome (STPDS), a capability model that she has run as a national collaborative programme that has reached over 250 schools in New Zealand, thanks to Lotteries, COGS, TECT, and local community Trusts. https://www.stpds.co.nz/home She is the Regional Coordinator of the Bay of Plenty Down Syndrome Association Inc.

Register here

Democracy and Down Syndrome
2024-10-10 12:00 - 13:00 | Zoom, New Zealand
When democracy was first getting started, only men with property could vote. these days, in most parts of the world, everyone over the age of 18 can have a say in who their leaders are – whether they have two X chromosomes or three copies of chromosome 21! Unfortunately, much of the political process is still challenging for the majority of citizens to navigate. In this presentation, you’ll hear about how NZDSA approached this issue in the New Zealand elections last year, and some ideas for getting engaged with democracy at all levels -from the local to the national to the global!

Dr. Sarah Paterson-Hamlin

Dr. Sarah Paterson-Hamlin is a locally elected member of the Whau Local Board within Auckland Council and the Editor of CHAT 21, the NZDSA’s journal. She is also a published poet with a focus on political themes and serves as the Funding Coordinator for the Raukatauri Music Therapy Trust.

Register here

Success in Education – NZ Maths
2024-10-09 19:30 - 21:30 | Zoom, New Zealand
Numicon and other approaches have provided schools and families with tools to make the understanding and use of maths accessible. The results are exciting and provide a justification for the inclusive education of our children. The impact of inclusion is far-reaching. We will explore the challenges of maths, research in education of children with Down syndrome, using maths every day and the use of the Numicon approach. Other resources shared: Maths for Life, Maths No Problem, EY Maths, Time4Learning, and See and Learn.

Margi Leech

Margi Leech has extensive teaching experience both in New Zealand and internationally, working with students from new entrants to secondary levels. Over 15 years ago, driven by a commitment to support her neuro-diverse children, she explored effective math teaching methods and discovered the ‘mastery’ approach through the work of Tony Wing and Dr. Helen Drury.
This led her to implement the Numicon programme, which employs a concrete-pictorial-abstract (CPA) model and significantly enhanced her children’s mathematical understanding. Inspired by this success, Margi deepened her expertise in structured math instruction based on science of learning principles and founded Edushop to positively influence math outcomes for students nationwide.

Register here
