The NZDSA, a charitable organisation is currently running its annual telephone fundraising campaign from the 18th June – 31st July 2018 to raise awareness and
to support its ongoing work. This year our annual appeal is twofold:
Our first is to host our annual Youth Development Camp at Vaughan Park Retreat Centre and MERC, Long Bay, Auckland in November 2018 . This camp will focus on building self-esteem, gaining independence and confidence, as well as some activities like rock climbing, archery and abseiling.
The second is to publish and distribute our quarterly journal called CHAT 21.
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: email@example.com or firstname.lastname@example.org
Phone: 0800 693 724 press 1 or 2 or you can ring the Down Syndrome Fundraising Office 09 361 4515
All donations to be posted to the Down Syndrome Fundraising Office P O Box 8635, Symonds Street, Auckland,1150
We appreciate your support!
Your donations enabled the NZDSA to host a camp and to create an awareness video clip "Dear Community" to celebrate World Down Syndrome Day. We hope that you will view and share the video.
Kōrero Mātauranga - let's talk about Education!
In February the Minister of Education, the Hon Chris Hipkins, announced details of the Government’s Education Work Programme, including an Education Summit to seek engagement from the broad range of stakeholders.
NZDSA representatives attended both the Auckland and Christchurch summits to share the experiences and thoughts of NZDSA members with the Ministry of Education.
Although the summit is finished, the NZDSA would still like to hear your thoughts and experiences of the Education system in New Zealand.
If you want to know more about the Summit follow this link Summit website
Strive Funshop 2017
From Thursday 13th July to Sunday 16th July, the NZDSA held it's annual Strive Funshop. There were a number of topics covered on the workshop from Prenatal screening, to the new Disability Strategy, the rights of people with disabilities and much more. It was great to see each Strive member participating and sharing their opinions. They were all tired by the end of the weekend but all thoroughly enjoyed their time!
Great to have Paul Gibson, the Disability Rights Commissioner, and Erin and Dave from HRC come to hear our voices (Strive leadership group) on prenatal screening for Down Syndrome. It was awesome that Paul presented our Strive 5 years of service certificate also!
Our Strive members with Brian Coffey, the Director of Office Disability Issues. It was great to discuss the Disability Strategy with Brian at the Strive Workshop.
The New Zealand Down Syndrome Association is pleased to present a video clip "Dear Community" to mark World Down Syndrome Day 2017. Please view this video and share with your family and friends to join us in celebrating World Down Syndrome Day by promoting awareness and creating more inclusive communities for everyone. #MyVoiceMyCommunity
DSi World Down Syndrome Day 2017 Global Video Event
Down Syndrome International presents a global video journey promoting inclusion of people with Down syndrome. "My Voice, My Community" features videos of people with Down syndrome, among their friends and peers. They talk about how it is important for their voices to be heard, as equal citizens of their countries and they encourage their governments to listen to their concerns. This global video event is presented for World Down Syndrome Day, Tuesday 21 March 2017. #MyVoiceMyCommunity
We encourage you all to have a look at Attitudes Series on Down Syndrome. The series covers a number of different topics from raising a child with Down Syndrome, to adoption and highlights the diverse talents and abilities of people with Down syndrome! You can view the video here
Also take a look at this "Question time" Video. Question Time is another Attitude series where people with disabilities answer questions about their disabilities people have always wanted to know. In this video, Sarah, who has Down Syndrome responds and shares her thoughts. Watch the video here.
World Down Syndrome Day Celebrations
On Sunday 19 March 2017, the ADSA held its 12th Annual Buddy Walk, which is a 3.5km walk around Mt Eden. This was followed by a family fun day with live entertainment, cake stalls, silent auctions, sausage sizzles, bouncy castles, rock climbing, clowns, bubbles and face painting.
On Saturday 18 March 2017, Wellington held it's World Down Syndrome Day celebration. There was a sponsored fun walk, certificates, raffles, sausage sizzle, games, dancing, children's entertainment, balloons and even a bouncy castle and bubbles!
On Saturday 18 March 2017, Dunedin held their World Down Syndrome Day celebration. It started off with a walk around the street lead by bag piper, followed by a magic show with Jay the Juggler and burgers and chips for lunch!
This year Canterbury Down Syndrome 'socked it to em' on WDSD. Families hooped, boxed, ran and jumped, with beautifully painted faces then relaxed, and chatted with tummies full of healthy delicious food. This year the Canterbury community supported World Down Syndrome day with sponsorship and donations, our sincere thanks to the following wonderful people who offered up their time and expertise to provide an afternoon of joy:
Rapid Relief Team Christchurch
Right Know Health and Fitness
Rotary Neighbourhood project
Christchurch City Council
World Down Syndrome Congress 2018
Experience, Research and Practice, widening opportunities, improving lives
25th - 27th July 2018, SEC, Glasgow, Scotland
Registration is now open, so book now to secure your place.
Delegates can register online via the WDSC 2018 Congress website where you will also find lots more information about the event, the venue and Glasgow, along with details of the plenary speakers already confirmed. (follow the link below to register)
The hosts, Down's Syndrome Scotland want this to be the best Congress to date, and your participation will help make this a reality. The Congress will bring together people with Down's syndrome, their families, teachers, medics and a host of others who have an interest in their lives. It's definitely not one to be missed!
NZDSA Charity Cycle Ride: Bluff to Cape Reinga, 2 100km, over 19 days
The NZDSA would like to express a huge "Thank You" to Stuart Bayne for his marathon cycle ride from Bluff to Cape Reinga in 18 days and also to all the donors and sponsors who raised over $11,000.
Ride for the Kids
The NZDSA would also like to express a huge "Thank you" to Danny Harrison, his team of organisers and supporters, sponsors and the many participants who raised over $6,000.
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 and all the donors who supported this initiative.
The New Zealand Down Syndrome Association is pleased to present a video clip "Dear Future Family, Whanau and Communities" to mark World Down Syndrome Day. This video clip features self-advocates sharing a message with their families, whanau and communities. The key message is that they enjoy meaningful and happy lives, they are valued members of their families and whanau, and they are contributing members of their communities. The New Zealand Down Syndrome Association invites you to join us in celebrating World Down Syndrome Day by promoting awareness and creating more inclusive communities for everyone.
A special thanks to Te Pou and Southern Stars for partnering with the NZDSA so that all the participants could attend the Key skills for Self-Advocacy and Self-Determination Workshops.
T-Shirts for Sale
Auckland Down Syndrome Association (ADSA) are selling "Down Right Perfect" and "Buddy Walk NZ" T-shirts. Please email Christel at email@example.com with the type of shirt you want, size and address you want it sent to. Stocks and sizes are limited, please be in quick to order. Click here to see the flyer.
Regional World Down Syndrome Day Events 2018
Otago World Down Syndrome Day Celebrations
Sunday 18th March, 11am – 2pm
Come along to bowlline Dunedin for a fun family day out bowling and a catch up over lunch.
Starting at 11am we'll go bowling followed by lunch at around 12.30 in the function room upstairs.(A great time to catch up with other family's)
Bowling and lunch will be supplied FREE by the Otago Down syndrome Assn.
So come along for a FREE family day out.
Looking forward to seeing you all there.
PLEASE RSVP BY 20TH FEB to firstname.lastname@example.org
Canterbury World Down Syndrome Day Celebrations
Saturday 25 March 2018 at North New Brighton Community Centre from 2 – 4pm.
Join us this year for a fun-filled family afternoon of Zumba, bubbles and music with all ages groups provided for.
Each person will receive a coupon for the real fruit ice cream truck, the one shot coffee cart available at your own cost. Please wear something comfortable that represents your voice and who you are in the community at work, school or socially. Please RSVP at cdsa.org.nz/wdsd2018
Wellington Down Syndrome Association Family Fun Walk
Details to come.
Auckland Down Syndrome Association Buddy Walk
On Sunday March 18th ADSA is holding its 13th Annual Buddy Walk and we would love you, your family and friends to join us.
The Buddy Walk is a 3.5 km walk around the base of Mt Eden starting at Tahaki Reserve, 250 Mt Eden Road. The area opens at 9am, a fun and energetic warm up starts at 9.45am and the walk starts at 10am. A fun filled day follows through to 2pm with lots of free activities and entertainment for you to enjoy, and lots of things to buy.
Read more here - https://adsa.org.nz/about-us/buddy-walk/
New Zealand Down Syndrome Association's Annual Report 2016
If you would like to receive an electronic copy of the NZDSA 2016 Annual Report, please contact Sharon at email@example.com
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.
Creating a Positive Hospital Experience Resource
The New Zealand Down Syndrome Association in collaboration with Geraldine Whatnell, has developed a resource that will empower individuals with Down syndrome, their families and healthcare professionals to create positive hospital experiences. This resource is suitable for people with Down syndrome, people who have intellectual /developmental disability, young children, educators and professionals.
The resource consists of a DVD and four booklets. The booklets are:
Having your Yearly Health Check
Having your Blood Pressure Taken
Going to the Dentist
To order a copy of the DVD please contact Linda te Kaat, National Administrator, firstname.lastname@example.org. 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.
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@example.com.
"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.
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:
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 firstname.lastname@example.org, we would love to hear from you.
The Patron of the New Zealand Down Syndrome Association is the Governor-General, Her Excellency, The Rt Hon Dame Patsy Reddy.
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 email@example.com 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.
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 firstname.lastname@example.org
Do you live in Auckland, Canterbury, Wellington, Waikato, Bay of Plenty or Otago?
Do you have an intellectual disability? And are you over 18 years of age?
Do you care and support (paid or unpaid) for somebody with an intellectual disability?
Have you travelled together (domestically and/or internationally) during the last year?
If you answered 'YES' to all of these questions, you have a unique opportunity to have your say!
Brielle Gillovic, a PhD student at the University of Waikato, wants to hear your stories.
This study hopes to explore the idea of 'care' during travel. To achieve this, we need to understand the relationship between the 'care giver' (informal carer or formal support worker) and the 'cared for' (person with intellectual disability), important as significant people in one another's lives. The aim of this study is to develop a more holistic understanding of what care means to your lives, in the hope that we can further support and enable independent travel for other carers, support persons and people with intellectual disabilities.
Brielle would like to hear about your perspectives and experiences of travelling together domestically and/or internationally, whatever they might be. She will ask you, for example, what your travel aspirations are, the challenges you face, or what 'care' personally means to you.
Please feel free to pass this message on, if you know of someone else who can answer 'YES' to the questions above.
If you are interested in being a part of this study, please contact Brielle at email@example.com or on 027 3919 020
Research Into Barriers To Inclusive Education
Youthlaw is surveying young people and their supporters about their experiences of "kiwi suspensions" and hear their stories when they were denied entry and participation in school. We are wanting to hear where formal processes of formal notification to the Ministry of Education or a suspension and Board of Trustees disciplinary meeting were not followed.
We want to hear about all of your experiences which may include the following:
Refusal of entry to school
Being barred participation in class
Being told to stay away part of school days
Being exempted from school or taken off the roll
Being informally told to stay away
Being told to leave school permanently to avoid a "bad record"
Please email us at firstname.lastname@example.org / email@example.com or call us on 0800 884 529. We are hoping that with your stories we can show where there are problems in the system for young people and getting an education. We are hoping that these stories will help us to tell law makers how they can make changes to make the system better for young people.
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.
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:
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.
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.
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.
you are interested in participating in this study, please contact firstname.lastname@example.org 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.
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.
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.
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.
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. They can be downloaded from this page.
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
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.