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The NZ Down Syndrome Association is a family/whanau driven organization.

Mission Statement
"To promote the participation of people with Down syndrome in their community"

Primary aims:

• To inform and support families/whanau
• To promote and advocate for positive attitudes
• To promote the rights and inclusion of people with Down syndrome
• To review policies and lobby government, and other agencies

The NZDSA offers:

• new parent support - through trained support parents
• national coordinator
• regional groups - activities throughout thirteen centres in New Zealand including coffee mornings, family events, guest speakers and individual support and advocacy
• newsletter - a quarterly update of news, information and stories, sent to all members
• information packs - for schools, professionals, family and friends
• website www.nzdsa.org.nz
• freephone number 0800 NZDSAI - so parents and professionals can easily be linked to support parents or a central information number


The NZDSA prenatal position statement

Download (PDF 157 KB)


NZDSA Telephone Fundraising Campaign

Southern Stars Charitable Trust has run a telephone appeal to raise funds on behalf of the New Zealand Down Syndrome Association. Thank you to Southern Stars Charitable Turst and all the donors who supported this initiative.

Above: Youth workshops made possible by the 2014 Southern Stars Charitable Trust telephone appeal.


NZDSA: A New Look

Have you noticed the NZDSA has a new logo? Click here to read more about it.


NZDSA Birthday / Anniversary Calendar

The NZDSA is selling a perpetual birthday/anniversary calendar for keeping important dates. Only $15 per calendar + postage costs, please download the NZDSA Calendar order form.



Announcing the NZDSA Resource: Learn Through Play and Daily Routines

Helping parents and caregivers to support their child's development through play and routines at home and in their community. NZDSA members who have a child six years of age or younger are entitled to one free copy. This resource is available to members outside of age ranges for $10.00. Non-members can order for $20.00. To order please download the NZDSA Resource Order Form here. Send your order and payment to Linda te Kaat, National Administrator, NZDSA, P O Box 4142, Auckland.


Announcing the new NZDSA Resource: Dress 2 Impress

Learn what to wear and how to wear it. Showing you how to select the right clothes for the right purposes. Contains a DVD and a resource booklet. Free to NZDSA members. Non-members can order the resource for $20.00. To order please download the NZDSA Resource Order Form here. Send your order and payment to Linda te Kaat, National Administrator, NZDSA, P O Box 4142, Auckland.


NZDSA Resources

To order a NZDSA resource, click here to download the NZDSA Resource Order Form. Send the completed order form and payment to Linda te Kaat, National Administrator, NZDSA, P O Box 4142, Auckland. All enquiries phone 0800 693 724 press 2 or email email nzdsai@xtra.co.nz.

  • "Living with Down Syndrome" book is a booklet providing information about Down syndrome. $5 including postage.
  • "Learn Through Play and Daily Routines" helps parents and caregivers to support their child's development through play and routines at home and in their community. NZDSA members who have a child six years of age or younger are entitled to one free copy.
  • "Turn the Page with Me" Resource demonstrates how parents can share books to support both their child's spoken language development as well as literacy skills. NZDSA members who have a child who is six years of age or younger are entitled to one free copy.
  • "Transition Process DVD to Daycare, Kindy or School" provides an overview of parents' and educators' perspectives on how to make the best transition to school. NZDSA members who have a child aged 3 - 6 are entitled to one free copy.
  • "Plan For the Future Resource" provides information on how to take positive steps from school into adult life. NZDSA members who have a child aged 14 - 30 are entitled to one free copy.
  • "Creating a Positive Hospital Experience" consists of a DVD and four booklets: Patient passport; Having your Yearly Health Check; Having your Blood Pressure Taken; Going to the Dentist. $10 for NZDSA members.
  • "Dress 2 Impress" shows how to select the right clothes for the right purposes. Contains a DVD and a resource booklet. Free to NZDSA members.

For a full list of NZDSA resources and an order form click here to download the NZDSA Resource Order Form.


2015 NZDSA National Awards

Left to Right: Christel van Baalen, Andrew Doehring, Maria Bonzon, Ben Reid

Congratulations to Christel van Baalen, winner of the Val Sturgess Memorial Trophy, NZDSA National Volunteer Award for 2015.

Congratulations to the recipients of the 2015 NZDSA National Achievement Awards:

  • Andrew Doehring
  • Maria Bonzon
  • Ben Reid

Click here to see the previous recipients of the World Down Syndrome Day NZDSA National Achievement Awards 2007 - 2015.

Inaugural 2014 Val Sturgess Memorial Trophy, NZDSA National Volunteer Award

On Tuesday 18 March 2014, The Honourable Tariana Turia hosted the New Zealand Down Syndrome Association's 2014 World Down Syndrome Day celebrations and the presentation of the NZDSA National Achievement Awards at Parliament Buildings in Wellington. A new volunteer award was also presented. In the words of the Honourable Tariana Turia "The Val Sturgess Memorial Award is a fitting tribute to the life of a very special volunteer, a woman who to her last days was meticulous in her attention to detail, a passionate and dedicated advocate and a true champion for the community." Georgia Garrett accepted the award for 2014 in memory of Val Sturgess (her Grandma).

Click here to see the previous recipients of the Val Sturgess Memorial Trophy, NZDSA National Volunteer Award

Showcasing Our Achievers

Click here to read about Our Achievers. If you have would like to share your achievements on this website please contact nzdsainfo@xtra.co.nz, we would love to hear from you.

NZDSA Patron

The Patron of the New Zealand Down Syndrome Association is Lt Gen The Rt Hon Sir Jerry Mateparae, Governor-General of New Zealand.

NZDSA Membership

Would you like to become a NZDSA Member? Becoming a member entitles you to receive the quarterly NZDSA Journal, resources and self-advocates have the opportunity to attend camps. For more information or to become a member email Linda at nzdsai@xtra.co.nz or phone 0800 NZDSAI (0800 693 724) or download and complete the NZDSA Membership Form here and return to NZDSA, P O Box 4142, Auckland. If you have previously been a member of NZDSA, please complete this form.

The NZDSA would like to update our membership database. Please download the 'NZDSA Membership Details' form, complete all fields and return by post to NZDSA, P O Box 4142, Shortland St, Auckland 1140, fax (03) 360 2868 or email nzdsai@xtra.co.nz. Thank you!



NZDSA Facebook Page

You can "like" the NZDSA on Facebook https://www.facebook.com/pages/New-Zealand-Down-Syndrome-Association/115931619947?ref=ts. Please remember to tick 'get notifications' so you stay connected.


DSi World Down Syndrome Day Global Event 2015

Down Syndrome International is delighted to announce the World Down Syndrome Day 2015 Global Video Event Preview Video.

The title this year is "My Opportunities, My Choices." The videos you will see to the right hand side of the preview video open unique windows into the lives of people with Down syndrome from 39 countries looking at their lives, hopes and dreams and the role of their families.


Events Calendar

For information about upcoming events including trainings and seminars, please download the Events Calender PDF.


Ministry of Education Inclusive Education website

The Ministry of Education's website on inclusive education, provides New Zealand educators with practical strategies, suggestions and resources to support learners with diverse needs. It includes a section specifically on students with Down syndrome. You can read more by clicking here. The guide "Down syndrome - A resource for educators" has been printed and is available for ordering from the Ministry of Education Customer Services, free phone 0800 660 662, fax 0800 660 663 or email orders@thechair.minedu.govt.nz


The State of Caregiving Study

The country's first longitudinal study of caregiving, being undertaken by Tracey-Lee Dalton of Auckland University would like to hear from more carers. So far about 500 carers have undertaken the survey but they are hoping to increase this number by several hundred more before Tracey-Lee closes off her study, which will be repeated each year for a period of at least three years to give a picture of the impacts of caring over time.

The survey is important because it looks at carer wellbeing, the financial costs of health/disability on households, how caring affects paid employment, and other topics we don't know enough about in New Zealand.

The survey link can be found at https://www.surveymonkey.com/s/7L3N9Q2
If you'd like to contact Tracey-Lee about the study please email her at tdal002@aucklanduni.ac.nz


Young Carers Survey Request

Lauren Hitchin is a PhD student at the University of Auckland Faculty of Education, researching young carers, which she defines as: Youth aged up to 25 years providing significant, on-going support for someone who has a disability, illness, drug or alcohol misuse, or who is elderly.

Her thesis explores the ways in which participants' insights can inform care policies and services in New Zealand. She hopes her study will lead to recognition and support for New Zealand young carers, and lead the way for further research in this crucial area. She is looking for research participants. There are 3 categories of participant:

  1. To qualify as a current young carer: You are currently aged up to 25 years and you are providing significant, on-going support for someone who has a disability, illness, drug or alcohol misuse, or who is elderly.
  2. To qualify as a former young carer: Your age now doesn't matter, as long as you provided significant, on-going support for someone with a disability, illness, drug or alcohol misuse, or who was elderly when you were aged 25 years or under.
  3. To qualify as a service and agency representative: You currently work or previously worked in an organisation where you think you may have dealt with young carers, or where you see a need for work with young carers.
  4. you are interested in participating in this study, please contact l.hitchin@auckland.ac.nz or (09) 623 8899 #46387 and Lauren will send you through more information on her study. However, there is absolutely no obligation to take part in the study if you contact her - she understands that you may just want further information about my research.

IHC Education Survey

In 2008 IHC lodged a complaint with the Human Rights Commission. IHC's complaint said that disabled children experience discrimination at their local school. Families had told us about the ongoing difficulties experienced in having their child's right to education recognized and responded to. Disabled children are treated differently to non disabled children in matters to do with enrolment, access to the curriculum and participation in school life.

This year IHC has filed an amended complaint with the Human Rights Review Tribunal. We are looking for new evidence from families and schools. We have developed a survey for families https://www.surveymonkey.com/s/RS7KFRM to complete so we can record family experiences. IHC invites you to complete the survey and provide details of the particular difficulties your family has experienced. Once you have completed the survey IHC Advocates will make contact to confirm your willingness to provide evidence and explain the next steps.

Please assist IHC by sharing this survey with other families. More information about IHC's Education Complaint can be read here: http://www.ihc.org.nz/campaigns/education-complaint/can-help-involved-ihcs-education-complaint/ If you have questions or concerns you wish to discuss please call Director of Advocacy Trish Grant (04) 495 2773 or email trish.grant@ihc.org.nz

IHC Free Book Project

The IHC/Freemasons free book scheme has been going for over 3 years now and has distributed nearly 1,000 books to families of children with an intellectual disability.

The scheme, which until recently was available for families of 0 to 12-year-old children, now includes a new book, "Believing in Better: steps to an ordinary life for your family member with an intellectual disability: a workbook." This New Zealand book, published in 2010, is for families of teens and young adults 13-24 years of age.

Currently the following books are on offer:

  • Gifts : Mothers Reflect on How Children with Down Syndrome Enrich their Lives by Kathryn Lynard Soper (for families of a child with Down syndrome under 5 years)
  • Gifts 2: How People with Down Syndrome Enrich the World edited by Kathryn Lynard Soper (for families of a child with Down syndrome over 5 years)
  • Believing in better: steps to an ordinary life for your family member with a disability: a workbook By Lorna Sullivan (for families of teens and young adults 13-24 years of age)

If your family qualifies for a book, please apply online http://www.ihc.org.nz/information-for-families/free-book-project/, email librarian@ihc.org.nz or contact the library on 0800 442


Press Release: Not for profits suspicious of Government decision to pay family carers

The Government's decision to allocate $23 million a year to family carers of adult children with disability needs seems positive, but it does not bear scrutiny, says the New Zealand Carers Alliance.

The Alliance, a coalition of 45 national non-profit organisations, says the Government's move will help a limited number of families.

The Government expects 1,600 people to be eligible. On those numbers, the $23 million is an average of $14,000 each. And the payment will be earned at the minimum wage.

"We had hoped this announcement would be a thoughtful first step to recognise the work of family carers, but it seems anyone not in the 1,600 group is unlikely to get anything," says Carers NZ Chair Roger Palairet.

The Bill introduced into Parliament as part of this week's Budget package is designed to shut down any further claims or entitlements.

"No wonder carers are disappointed," says John Forman, Chair of the Carers Alliance.

Payment for family carers is an issue governments are considering worldwide. With more people living for longer in the community with higher health or disability support needs than past generations, assistance for those providing care also has to advance, they say.

"Often family carers have had to sacrifice their own career opportunities and paid employment to provide intensive support for family members," says Mr Palairet. "Their lives can easily spiral into poverty, compromising their wellbeing and their ability to provide long-term support to loved ones."

"The aim of the carer movement in New Zealand and around the world is to increase the recognition and respect for family carers, who are the biggest health workforce. These Budget decisions responding to the Government's longstanding breach of the Human Rights Act shows we have a long way to go to achieve proper recognition and respect for family carers in New Zealand."

Carers NZ and the Carers Alliance have called on all political parties to ensure fair long-term solutions for the challenges of ageing, caring, and disability support.

Click to read the Health Minister's announcement, and you can find further information about the new policy at the Ministry of Health's website, along with questions and answers.


Need information about the disability sector response to the Canterbury earthquake?

To find out more follow this link www.newzealanders.org

Ministry of Health - Introducing the New Model for supporting disabled people

Disabled people want a good life and more choice and control over support they receive. After talking to disabled people, their families, providers and the wider disability sector, the Disability Support Services (DSS) Group at the Ministry of Health has developed a new model for disability support services. DSS are demonstrating this new model in Tauranga/Western Bay of Plenty over the next year, working with the local community to make sure the model works well.

What is different about the new model?
OLD WAY - Someone else makes decisions about what support you get and when you get it
NEW WAY - With support, you decide what's important to you to have a good life

The new model has four components:

  • Information and assistance - Local Area Coordinators walk alongside the disabled person, help them work out what they want from life, help them build community networks
  • Funding - Moving towards giving funding rather than types and levels of services and increased use of self assessment (Note: funding is not given directly to the disabled person. Allocated hours are given a monetary value which the person can decide how to use and who to pay, within MoH policy)
  • Buying support - More choice and control over what disabled people can buy with the funding by increasing availability of Individualised Funding and making supports more flexible
  • Quality of support - Better ways for disabled people, MoH and providers to confirm that people are having a good life.

To find out more follow this link www.health.govt.nz/our-work/disability-services/new-model-supporting-disabled-people or read this document


Carers Strategy Action Plan for 2014 - 2018

The New Zealand Carers' Strategy Action Plan for 2014 to 2018 was launched in Parliament by the Minister for Senior Citizens, the Hon Jo Goodhew, on 18 February 2014. The Action Plan for 2014 to 2018 was developed in consultation with whanau, aiga and carers. It builds on the results and lessons of the previous Carers' Strategy Action Plan from 2008 to 2013 and reaffirms the Government's commitment to the Carers' Strategy. The New Zealand Carers' Strategy recognises the immense contribution of whanau, aiga and carers to New Zealand. Its purpose is to improve support for carers. To download the document click here.


Updated government Guide for Carers

The updated Guide for Carers is now available online and as a hardcopy booklet. Attached is an electronic version for you to view.

It offers practical help for whanau, aiga and carers who assist family members and friends who need help with everyday living because of a health condition, disability or injury. A flyer based on the Guide is also available in eleven other languages, as well as English. They can be downloaded from this page.


Carers NZ

Carers NZ exists to support our country's family, whanau, and aiga carers. Click here to visit the Carers NZ website. The Facebook page can be found at www.facebook.com/wecarenz

Click here to find the Young Carers NZ Facebook page. It helps young carers connect and stay informed. The Facebook page can be found at www.facebook.com/youngcarersnz


21 March - World Down Syndrome Day

Down Syndrome International has officially designated 21 March as World Down Syndrome Day. The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome, hence the date 21/03.

What is T4T?
T4T is a catchy title for a concept which is centred on tea parties. Tea 4 Trisomy 21 refers to the third copy of chromosome 21and the date of World Down Syndrome Day. T4T parties will be an opportunity to raise awareness of Down syndrome in the community.



Click to enlarge

World Down Syndrome Day (WDSD)

If you are interested in hosting a T4T event in your region, please register your interest so that we can send you a quick guide information pack.

Please contact Zandra 0800 693 724 or nzdsainfo@xtra.co.nz




The New Zealand Down Syndrome Association thanks Pub Charity for their support.