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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 whose lives have been changed by Down syndrome
• 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

The NZDSA is currently running its annual telephone fundraising campaign from the 16th June - 18th July to raise awareness and to support the ongoing work of the NZDSA, a charitable organisation.
This year our annual appeal is twofold to;

  1. host our annual Youth Development Camp at Vaughan Park Retreat Centre, Long Bay Auckland on the 7th - 9th November 2014
  2. produce a resource called HEALTHY LIVING-HEALTHY LIVES, which will empower people with Down syndrome to take a lead in their own health and lifestyle.

We would like to extend our thanks to Southern Stars, a registered charity working to raise funds on behalf of the NZDSA.
For all enquiries:
Email: nzdsainfo@xtra.co.nz
Phone : 0800 693 724
All donations to be posted to P O Box 8635, Symonds Street, Auckland,1150
We appreciate your support!


Thank You to all NZDSA volunteers

There are many individuals who regularly spend time volunteering and supporting NZDSA and regional groups. We appreciate all the work you do and time you spend as a volunteer. Many thanks to you all from the team at National Office.


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 "Plan for the Future" Resource

The NZDSA has developed the "Plan for the Future" Resource kit to empower people with Down syndrome, their parents, family/whānau, professionals and future employers with knowledge, information and inspiration to support the journey from school to fully participating in adult life. This resource will assist all involved to create and nurture a plan which will enable people with Down syndrome to achieve their dreams and goals so that they can live the life that they have imagined. This resource contains generic material so it would be relevant to all ORS funded students. To order a copy of the resource please download a copy of the order form and return to Linda te Kaat, National Administrator, NZDSA, P O Box 4142, Auckland or email nzdsai@xtra.co.nz. For enquiries phone 0800 693 724 ext. 2. $20 per DVD for non-members. NZDSA members who have a child aged 14 - 30 are entitled to one free copy of the DVD resource. Members with a child under 14 or over 30 years, or affiliate members can order the resource for $5.50 to cover postage.


Announcing the Creating a Positive Hospital Experience DVD

The New Zealand Down Syndrome Association in collaboration with Geraldine Whatnell, has developed a new resource that will empower individuals with Down syndrome, their families and healthcare professionals to create positive hospital experiences.

The resource consists of a DVD and four booklets. The booklets are:

  • Patient passport
  • Having your Yearly Health Check
  • Having your Blood Pressure Taken
  • Going to the Dentist

To order a copy of the DVD please download the order form and send to Linda te Kaat, National Administrator, NZDSA, P O Box 4142, Auckland or email nzdsai@xtra.co.nz. For enquiries please phone 0800 693 724 ext 2. NZDSA members can order the resource at $10 to cover the cost of administration and postage. Non-members can order the resource at $20 including postage.


Announcing the Turn the Page with Me DVD

The NZDSA in collaboration with the Champion Centre and the University of Canterbury has developed a new resource that demonstrates how parents can share books with their children with Down syndrome to support both their child's spoken language development as well as developing their literacy skills. It models effective strategies, explains why they work and provides suggestions for choosing appropriate books.

The resource is free to members who have a child who is six years of age or younger. NZDSA members with a child older than six years can order the resource at $10 to cover the cost of duplication and postage. Non-members can order the resource at $20 including postage. Click here for the order form. To order a copy of the DVD, please request from Linda te Kaat email nzdsai@xtra.co.nz or phone 0800 693 724 ext. 2.


NZDSA Resources

To order one of the following NZDSA resources, please click on the link to download the relevant form and return with payment to Linda te Kaat, National Administrator, NZDSA, P O Box 4142, Auckland. All enquiries phone 0800 693 724 press 2 or email nzdsai@xtra.co.nz.

  • Recordings of NZDSA 2010 "Planning for the Future Forum." $25 per DVD set including postage. Click here for more information or for the order form.
  • "Living with Down Syndrome" book. $5 including postage. Click here for more information or for the order form.
  • Transition Process DVD to Daycare, Kindy or School. $20 per resource. NZDSA members who have a child aged 3 - 6 are entitled to one free copy of the Transition to School resource. Click here for the order form. For more information see Announcing the Transition Process DVD
  • Plan For the Future Resource. $20 per DVD. NZDSA members who have a child aged 14 - 30 are entitled to one free copy of the DVD resource. Members with a child under 14 or over 30 years, or affiliate members can order the resource for $5.50 to cover postage. Please click here for the order form.
  • Turn the Page with Me Resource. The resource is free to members who have a child who is six years of age or younger. NZDSA members with a child older than six years can order the resource at $10 to cover the cost of duplication and postage. Non-members can order the resource at $20 including postage. To order contact Linda te Kaat, email nzdsai@xtra.co.nz or phone 0800 693 724 ext. 2. Click here for the order form.
  • Creating a Positive Hospital Experience DVD. NZDSA members can order the resource at $10 to cover the cost of administration and postage. Non-members can order the resource at $20 including postage. To order a copy of the DVD click here for the order form.
  • For a full list of NZDSA resources click here to download the NZDSA Resources pdf.

2014 NZDSA National Achievement Awards

Left to Right: Katrina Sneath, Christopher Tavite, Chris Whitmore

Congratulations to the recipients of the 2014 NZDSA National Achievement Awards:

  • Katrina Sneath
  • Christopher Tavite
  • Chris Whitmore

Click here to see the previous recipients of the World Down Syndrome Day NZDSA National Achievement Awards 2007 - 2013.

Inaugural 2014 NZDSA 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).

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.

Down Syndrome International 2014 Global Video Event

Down Syndrome International presents the Global Video Event: "Let Us In - I Want Access To Healthcare!" In partnership with 50 countries for World Down Syndrome Day 2014, please watch this video and help create a single global voice for advocating for the rights, inclusion and wellbeing of people with Down syndrome on Friday 21 March.


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


Upcoming Trainings and Seminars

For information about upcoming trainings and seminars please download the pdf Trainings and Seminars 2014


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


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.


Work and Income Benefit Changes

If you're receiving a benefit from Work and Income, there are some changes occurring from 15 July 2013 you need to know about. You can find out more by reading Changes for people on Sickness Benefit or FAQ's Invalids Benefit and FAQ's Sickness Benefit.


We Care Campaign

To find out more follow this link www.wecare.org.nz The campaign Facebook page can be found at www.facebook.com/wecarenz

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

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.


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



Carers Strategy Update

The Government has launched the Carers' Strategy and we have formally entered the five year Action Plan period. You can access the Strategy and Action Plan document by going to www.carers.net.nz and clicking the homepage Strategy button, which links directly to the document at MSD's website. Or you can access the online document at www.msd.govt.nz


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