2021 – a year of connection Pae Ora submission –

2021 – a year of connection

By Kim Porthouse

I write this as 2021 draws to a close. As you all know, 2021 was our 40th anniversary as an organisation and I hope you all enjoyed our bumper October edition of CHAT 21 that looked back over the past 40 years. I know I thoroughly enjoyed it and many memories were evoked. For this column, I thought I would reflect back on 2021. People often ask the question ‘what does the NZDSA do?’ I hope my reflections may answer that question, especially as this year has been one that saw not only the NZDSA, but the country and world as a whole, face ongoing challenges to stay connected due to the ongoing COVID-19 pandemic. Despite the difficulties presented by COVID-19, I look back with pride at how we, the NZDSA, have successfully adapted to the growing online world. We have embraced the online Zoom platform for connecting with families, regional groups, each other, and other organisations to conduct meetings and provide education and support. Some Zoom events stand out for me. Earlier in the year we celebrated World Down Syndrome Day (WDSD) with a unique online event which we called ‘The Big Connect’, connecting families throughout the country on Zoom. During the nationwide Level 4 lockdown in August/September, we hosted Zoom cocktail hours on Friday afternoons. These were an opportunity for people to come together, see others face-to-face, and simply chat. Zoom sessions also helped our young people with Down syndrome connect with each other regularly throughout the year. Another major event and highlight of the year was the online conference that took place throughout Down Syndrome Awareness Month (October). There were a wide range of speakers covering a wide range of topics, and this event was very well received and attended. A number of the sessions were recorded and are being produced into an online resource that will be available to members via our website. We also kept connected by increasing our use of social media platforms such as Facebook and Instagram to disseminate information to our members and the wider community. As always, the NZDSA has continued with the provision of support and information to the wider Down syndrome community in New Zealand through core services such as regular E-news updates, CHAT 21, the website, our 0800 number, via email, the loaning of Numicon maths kits, and the ongoing development and provision of resources. 2021 also saw the release of the revised and updated ‘Living with Down syndrome’ booklet. This comprehensive resource is available in hard copy as well as on our website. The NZDSA’s introductory brochure has been translated and published in a variety of languages, including te reo Māori, Samoan, and Hindi, and this is also available in both hard copy and online. This year has also seen extensive development of online digital resources. Over 30 resources have been developed and are now available

on our website. Many of these are new resources, with relevant older resources also redeveloped into digital formats. For the safety of our vulnerable community, it was necessary in 2021 to continue with our policy of no face-to-face events unless the whole country was in Alert Level 1. This policy will be reviewed regularly in 2022 to reflect the new traffic light system, vaccination rates, and ongoing new developments associated with COVID-19. The NZDSA, like so many other organisations, had to cancel or postpone some face-to-face events but, fortunately, there were periods earlier in the year when some face-to- face events were possible. A highlight event for me in 2021 was the National Achievement Awards hosted by the Her Excellency Dame Patsy Reddy and held at Government House in Wellington. Congratulations to Achievement Award winners Rochelle Waters, Jacob Dombroski, and Amelia Eades, who all thoroughly deserved the recognition. At this event, the Val Sturgess Volunteer Award was presented to Kathryn Sadgrove who has been a committed volunteer for decades, both in her region of Northland and nationally for the NZDSA. We hosted Capacity and Capability workshops for whānau in the Manawatū, as part of the System Transformation pilot in the region. We were also able to run seminars about aging and Down syndrome, as well as Down syndrome and Autism; these seminars were also recorded for development into online resources. The NZDSA works to support regional committees and volunteers, and we were able to host a National Professional Development workshop for representatives from around the regions. As always, we have continued working towards our vision of the empowerment of people with Down syndrome to reach their potential, and early in the year we were able to hold a youth development camp and some leadership workshops. Furthermore, the NZDSA has supported the advocacy of people with Down syndrome to have a voice, with STRIVE representation at Down Syndrome International Self-advocacy Forums, and our young adult leaders have participated in national research with the Donald Beasley Institution. The NZDSA has the roles of both systemic advocacy and raising awareness. We have undertaken extensive work on a range of submissions, increased media engagement, had representation at meetings with the Ministries of Health and Education as well as the Human Rights Commission,

NZDSA President, Kim Porthouse

At the 2021 National Achievement Awards, Government House, Wellington Health and Disability Commission, and Office for Disability Issues. We maintain strong alliances and collaborations with a range of other organisations that work to advocate for the disabled community. We help to raise awareness through our digital video resources and humaninterest articles, which are released on a variety of media platforms. This year, as part of our advocacy and awareness work, we have done presentations for Perinatal Anxiety and Depression Aotearoa (PADA), Awhi-at-home (via IHC), Asia Pacific Down Syndrome Federation, Mana Whaikaha, Student Midwives, Nelson Child Development Service, and Catholic Women’s League. We have also collaborated with Plunket to produce an educational resource for their nurses. In 2021, we saw the retirement of longstanding staff member Linda te Kaat. We were sad to lose Linda’s experience, organisational skills, and passion for our community. Over the years, she was instrumental in ensuring the strength and financial stability of the organisation. Her retirement, however, did give us the opportunity to review the staffing of the organisation, and we were able to restructure the position to make two parttime positions, which will help to provide additional resilience for the organisation. We welcomed Rose te Kaat – National Administration and Finance Officer, and Grace Perry – National Administration Support Officer. They have both already proven to be valuable members of the team. It has been great to have our National Executive Officer, Zandra Vaccarino, back in full capacity this year. Her operational experience and wide networks are again working well for the organisation. Zandra brings an extra dimension and vibrancy to the organisation, which helps the NZDSA to thrive. I’d also like to mention Jess Waters, Social Media & Information Officer; Coen Lammers, Editor and Communications Officer; and Daniel te Kaat, Publisher and Graphic Designer, for their continuous efforts, commitment, and passion to providing the services of the NZDSA over the past year. They have been instrumental in assuring the success of the new website and a greater presence on social media platforms, which have played vital roles in the success of NZDSA in 2021. We are therefore sad to be losing the services of Coen Lammers. He has brought a vivacity to CHAT21 during his editorship, and his media and communications expertise have been invaluable to the NZDSA over the past few years. I welcome Sarah Paterson-Hamlin to the role of Editor. It is clear 2021 has been a full and busy year for the NZDSA. The activities and achievements of the organisation would not be possible without the hard work, passion, and dedication of not only all our staff and contractors, but also our support workers and volunteers, including regional volunteers and my colleagues on the National Governance Committee, and I would like to express my heartfelt thanks to all. Lastly, I would like to wrap up this reflection by taking the opportunity to express my gratitude to everyone who has contributed to NZDSA activities, events, and CHAT21. I also thank every one of our members who have participated in our online forums and other events. Together, we have all contributed to making this, our 40th year, both memorable and successful. Ultimately, your participation helps NZDSA achieve its goals to support families and empower people with Down syndrome to fulfil their potential and to be valued members of their communities.