National Executive Officer

“Volunteering is the ultimate exercise in democracy. When you volunteer, you vote every day about the kind of community you want to live in.” – Author Unknown

Kia Ora

On behalf of the NZDSA I would like to extend our appreciation and gratitude to all the past and current volunteers, who through their extensive contributions continue to shape the Down syndrome community. I hope that on Monday the 5th December you took a moment to celebrate International Volunteer Day. I believe special recognition should be given to the outgoing NZDSA President, Shelley Waters, a dedicated volunteer who has served the NZDSA with passion and commitment to foster a vibrant, responsive and sustainable organisation. Shelley, we appreciate all your contributions. This quarter I received a nomination from the Burnett family who nominated the wonderful Sirrea Lumsden (age 9) for the NZDSA Rose Award.

The Rose Award The Burnett family, Di, Brad, Jada, Marlowe and Ivy said that "Sirrea has not only been a great 'buddy' and friend to Jada but she has been, and is, a great role model to everyone around her, especially her peers and Jada's classmates. She goes out of her way to be a great 'buddy', but it is just her - she has an amazing, friendly, happy and fun personality and she not only engages with Jada in the most wonderful way, she also interacts with the whole family. She has a nick-name for Jada's younger brother Marlowe ('chipmunk') and she takes Jada's little sister for piggy back rides and just likes to be with us all and play. Sirrea has waited at the front gate or in class for Jada to arrive many mornings over the year, so she could encourage Jada to class, play, read, listen and be there for her before school started. She runs up the road or across the courtyard to catch-up to us to say ‘hi’ and give hi-fives and hugs – she has a special hug routine designed just for Jada. Sirrea was assigned as Jada's buddy at the beginning of the year because both girls ride horses – Jada with North Shore RDA and Sirrea with Auckland Equestrian Centre. Most buddy's spend time together during a setperiod/time arranged by their teachers, but Sirrea goes above and beyond the role of 'buddy'. She visits Jada at break times to hang-out and play her favourite games with her and her class friends, and she spends time with her on the playground before, during and after school too. She sometimes doesn’t have long but will pop-in to say ‘hi’ with a smile and a hug and she’ll get down low to chat with Jada directly, genuinely interested in what she has to say. I would like to acknowledge Sirrea for her easy carefree spirit, for accepting everyone for who they are and for being a wonderful, kind and caring friend to Jada this past year. Her actions, for being just who she is, promote acceptance and value diversity for all to see and follow in our community and beyond. She has a big heart that is full of love and kindness".

MidCentral Regional Leadership Group.

MidCentral Transformation - Mana Whaikaha The prototype of the transformed disability support system, Mana Whaikaha, launched in MidCentral on October 1. The launch was hosted in Palmerston North and the morning was charged with celebration. Lorna Sullivan, one of the Directors of Mana Whaikaha said “what was most impressive about the launch was the deep sense of investment and ownership that Disabled People and whānau have in this new system”.

Three weeks after the launch over 300 people have engaged with a Kaitūhono/Connector and we are starting to hear positive stories of how people are exercising their choices to meet their needs.

If you want regular updates about Mana Whaikaha, you can read regular posts on https://www.manawhaikaha.co.nz NZDSA 2018 Annual Report

What is Mana Whaikaha? Mana Whaikaha is a prototype of a transformed disability support system which is funded by the New Zealand Government, through the Ministry of Health. The prototype, which will operate on a 'try, learn and adjust' approach, is being tested in the MidCentral DHB region, which includes these districts:

• Palmerston North • Horowhenua • Manawatū • Ōtaki • Tararua.

Mana Whaikaha has been co-designed over the past 18 months with disabled people and whānau, and others in the disability sector. It is based on the Enabling Good Lives vision and principles and aims to:

• provide disabled people and whānau with more flexible support options • give disabled people and whānau greater decision making over their support and lives • improve outcomes for disabled people and whānau, and • create a cost-effective disability support system.

Zandra at the 2018 NZDSA Youth Development Camp

I usually include an extract from the NZDSA’s Annual Report but I haven’t done that this year as this edition of CHAT 21 is a bumper edition and we just don’t have space to include an overview. So, if you would like to read the NZDSA’s Annual Report please email me at neo@nzdsa.org.nz and I will email you a full copy.

Youth Development Camp - Southern Stars Thank you Southern Stars for making it possible to host the Youth Development Camp at Vaughan Park in November 2018. You can read all about the weekend in this edition of CHAT 21.

World Down Syndrome Day It is time to start planning how you will celebrate World Down Syndrome Day on the 21st March 2019. The NZDSA will be promoting two campaigns to create awareness, to promote Down syndrome and to fundraise in our communities.

• The first campaign is T4T (Tea for Trisomy 21) the NZDSA’s signature event to celebrate World Down Syndrome Day (WDSD). We encourage people in our community to host a Tea party in their homes, work place, recreation and leisure spaces to mark World Down Syndrome Day. • The second campaign is LOTS OF SOCKS, which is an opportunity to wear socks in all shapes, sizes and colours which will start conversations about WDSD, create awareness of Down syndrome and raise funds for the NZDSA so that we can continue to provide support and information to people with Down syndrome and their family and whānau.

We will once again be using Everyday Hero to create online fundraising events. If you would like to know more about hosting a T4T party or LOTS OF SOCKS please email Jess (nzdsainfo@xtra.co.nz) so that we can forward you an information pack.

Summer break Yes, it is that time of year when the team at the NZDSA national office starts to consolidate our work for 2018 and plan for events in 2019. The NZDSA national office will be closed from the 18th December 2018 to the 7th February 2019.

We would like to publish your favourite summer photographs in Enews and the next edition of Chat 21 so please send your photographs to Jess at (nzdsainfo@xtra.co.nz)

The NZDSA National Committee and staff wish you and your family a blessed Christmas and a peaceful and festive season. Enjoy the lovely summer weather.