Neo Notes

By Zandra Vaccarino

Kia ora, In 2021, I began a series that focussed on answering a frequently asked question “What does the NZDSA do?” In the March 2021 edition of CHAT 21, the focus was on systemic advocacy work as a means to influence changes in policy and processes so that people with Down syndrome can benefit and enjoy more equitable access to the same rights as all New Zealanders. In the July 2021 edition, I shared that the NZDSA receives no government funding, so securing financial support is essential so that we can continue to deliver our core information, support, and systemic advocacy work as well as all the additional projects we undertake. In the October 2021 edition, I shared that a more visible task is to celebrate people with Down syndrome, the incredible contributions of our regional groups, and all our volunteers. In this edition of CHAT 21, I thought I would focus on the NZDSA’s commitment to raising awareness of Down syndrome. World Down Syndrome Day (WDSD) is a wonderful opportunity to raise awareness in the wider community. This year, Down Syndrome International chose ‘Inclusion Means’ as the theme for WDSD and it was the ideal opportunity to raise awareness of the human rights of all people with Down syndrome to fully participate in and contribute to their community. It was also an opportunity to discuss the fact that by signing the UN Convention on the Rights of Persons with Disabilities (UNCRPD), New Zealand has obligations to uphold the intent of the UNCRPD. However, this has not translated into full community participation, or the privileges and rights other Kiwi citizens may take for granted. The NZDSA utilised social media, print media, radio, and television to share our key messages for WDSD. Lily Harper and I were interviewed by John Campbell from TVNZ’s Breakfast, and Lily was an inspiring advocate to share why inclusion is so important for people with Down syndrome. The NZDSA has other key awareness campaigns in our annual calendar, including Volunteer Day and Volunteer Week, Down Syndrome Awareness Month, and the International Day of People with Disabilities. In addition, the NZDSA identifies issues that impact on our community and will respond to these issues to raise awareness of the impact that they have or will have on our community. The NZDSA believes that raising awareness in the wider community is essential if we want to bring about social change. Raising awareness addresses myths, changes perceptions, provides opportunities to educate, develops greater supporters, and calls for actions which will create change and transform our communities and society. In this edition of CHAT 21, you can read more about all the range of ways that our communities across New Zealand contributed to raising awareness of Down syndrome.

Big Connect Once again, COVID-19 restrictions stopped the NZDSA and regional Down syndrome groups from hosting their usual WDSD celebrations, but we still wanted the community to gather together to celebrate, so the NZDSA hosted another mega-online community event. The Big Connect was opened by the Minister for Disability Issues, the Honourable

Carmel Sepuloni, who then handed the virtual podium to the President of Down Syndrome International, Bridget Snedden, who passed over to Paula Tesoriero, the Disability Rights Commissioner. The opening was followed by a thoughtprovoking and inspiring discussion on inclusion by expert panel members. • Bridget Sneddon – President of DSI • Paula Tesoriero – Disability Rights

Commissioner of NZ • Brian Coffey – Director Office for

Disability Issues • Trish Grant – Director of Advocacy IHC • Dr Maree Kirk – President Bay of Plenty

DSA and Director, STPDS NZ • Dr Jude Mac Arthur – Senior Lecturer school of Critical Studies in Education,

UoA • Duncan Armstrong – STRIVE member and performing artist • Jonathan Mosen – Chief executive

Officer, Workbridge • Georgina Kirk – Director and

Organisational Psychologist, kindred and a sibling • Andre Oswin – STRIVE member and self-advocate • Carlos Biggemann – Recipient of the 2021 Attitude Creative Award • And Libby Hunsdale – Model and actor These are a few of the responses to the question ‘what does inclusion mean?’ “Inclusion to me is being able to be free to do whatever you like, no matter what your disability is. When I was included on the set of the movie Poppy, it felt really good because I felt more independent and I think giving people those sorts of opportunities is important for inclusion.” Libby Hunsdale “Inclusion to me means having a paid job just like everyone else” Andrew Oswin. If you missed this event, you can view the recording on the NZDSA website.

Congratulations to Libby Hunsdale On World Down Syndrome Day and at the Big Connect event we heard that Libby Hunsdale was awarded the Best Actress in a Narrative Feature at the Socially Relevant Film Festival in New York. This is not the first time Libby was recognised for her leading role in Poppy, but it was wonderful to celebrate this international recognition with her on World Down Syndrome Day. Linda Niccol, the writer and director also shared the Best Narrative Feature award with another director. Congratulations to Libby and Linda for this wonderful achievement.

Lily Harper and Zandra Vaccarino afer the Breakfast show interview

The Big Connect, World Down Syndrome Day 2022

NZDSA launches a New Resource and Support Group The NZDSA was pleased to host an online launch of the “Down syndrome and Autism Spectrum Disorder (ASD)” digital resource as part of our World Down Syndrome Day celebrations. This resource is an introduction to the diagnosis of dual disability: Down syndrome and Autism Spectrum Disorder. The NZDSA would like to thank former committee member Geraldine Whatnell who is also the Nurse Practitioner Mental Health and Addictions Service at Palmerston North Hospital for her willingness to collaborate with the NZDSA to produce this resource. This resource was developed in response to the request to host more workshops but this was not possible in the pandemic environment. We recorded a workshop which means anyone in the country can now access this online. This resource will be available on our website. The NZDSA will also be hosting a quarterly online support group for parents and whānau who have a family member with the dual diagnosis of Down syndrome and Autism Spectrum Disorder. We will advertise these events in our E-news and via social media, or you can email neo@ nzdsa.org.nz and I will add your name to the mailing list. Wellbeing Series We have also hosted two more online episodes in the Wellbeing series. The episodes are Coping with Change and Mindfulness. The Coping with Change episode offers an understanding of how change impacts on us and how to adjust to life after changes. The Mindfulness episode explores how to use different techniques to stay in the present moment and improve our wellbeing The presenter of both episodes is Debbie Buddle, a Wellness Practitioner specialising in Physical and Mental Wellness through Nutrition and Counselling. These episodes will also be available on the NZDSA website.

Down for Love In the next few months, you will be seeing a few familiar faces on your television as Down For Love, a primetime television series for TVNZ 2 produced by Attitude TV goes to air. Down for Love will focus on people living with Down syndrome who are on a quest for romance. We look forward to featuring the participants in a future edition of CHAT 21.

Changes in the Disability Sector I am sure you have all been following the changes associated with the Disability System Transformation and the national rollout of Enabling Good Lives across Aotearoa, as well as the setting up a new Ministry for Disabled People. This quarter we have seen the Highest Needs Review and consultation on the draft Physical Restraint Rules and Guidelines in the education sector. We have also seen the Disability Commissioner calling for an Inquiry into the Support of Disabled People and Whānau During the Omicron Outbreak. All of these changes, consultations, and the enquiry represent a significant step and a positive change for upholding the rights of disabled New Zealanders and their whānau. The NZDSA is aware that our members will have questions about the establishment of the New Ministry for Disabled People, Disability System Transformation, the national rollout of Enabling Good Lives, and the outcome of the Education consultations, so the NZDSA will be sharing news with you via E-news and CHAT 21. The NZDSA will continue to advocate for people with Down syndrome and their whānau through our established alliances and networks. Catholic Women’s League of Aotearoa NZ The NZDSA was delighted when the Catholic Women’s League of Aotearoa NZ (CWLA) selected the NZDSA for their 2021 Mission At Home Appeal. Throughout 2021 members of CWLA partnered with the NZDSA to raise awareness, promote the work of the NZDSA and fundraise for the 2022 Youth Development Camp. I was fortunate to meet a number of members of CWLA at their annual CWLA National Conference and to learn more about the variety of ways the various branches promoted awareness and fundraised for the NZDSA. In January we heard that CWLA raised just over $10 000.00 which will be a significant contribution towards the costs of hosting our annual Youth Development camp. I would like to extend our sincere thanks to everyone involved in raising awareness and supporting the 2021 Mission at Home Appeal. I would like to thank Alex Snedden for all his support of the 2021 Mission At Home Appeal as well as other members of the NZDSA who participated in the activities their local branches organised. I am sure you will join me in thanking all the members of CWLA for their support. Hei konei rā Zandra

Zandra with members of the Catholic Women’s League of Aotearoa’s National Conference