NEO Notes

By Zandra Vaccarino

Kia ora

What does the NZDSA do? In the previous edition of CHAT 21, I mentioned that in 2021 I started a series that focussed on answering a frequently asked question “What does the NZDSA do”? In this series, I have shared the following areas of foci for the NZDSA: • systemic advocacy as a means to influence changes in policy and processes so that all people with Down syndrome can benefit and enjoy more equitable access to the same rights as all New Zealanders; • securing funding to deliver our core information, support and systemic advocacy work as well as all the additional projects we undertake, as the NZDSA receives no government funding; • celebrating: people with Down syndrome; the incredible contributions of our regional groups and all our volunteers; • raising awareness of Down syndrome in the wider community to bring about social change and transform our communities and society.

This time, I thought I would focus on resource development. The NZDSA’s aim is to provide a hub of resources for our members, professionals, and the wider community as we want everyone to have access to relevant information across a wide range of topics and issues. The NZDSA’s aim is to provide resources that are both educational and empowering. Creating resources that range from prenatal to aging is an ongoing task and it is important to also review and update resources so that they remain relevant. In addition, as the needs of our community change, so too does the NZDSA strive to deliver resources to meet these needs. Where we can, we access relevant resources developed by others instead of recreating resources, but often the NZDSA does need to step up and develop specific resources for our community. The NZDSA provides resources like the New Parent Pack to our regions and maternity care professionals, and we distribute a variety of resources to our members, students, educators, allied health professionals, and other community organisations. The NZDSA provides most resources in both online and hard copy formats. All our online resources are available to our members for free on the NZDSA website. To access the extensive list of resources, just click on the resources button on the website menu. Remember, membership to the NZDSA is free. On the next page I have included more details about our recently launched resource, Down Syndrome & Autism: A Dual Diagnosis, as well as the Wellbeing Series which is nearing completion. The NZDSA also refers members to the extensive IHC resource library. Many of the resources in the library were donated by regional groups, so it is worth contacting IHC library if the NZDSA does not have a specific resource you are looking for. We welcome suggestions on resources including tips sheets that you would like to see us develop. We are also aware that our members have so much information to share, so if you would like to be involved in resource development, please contact me neo@nzdsa.org.nz.

Down Syndrome & Autism: A Dual Diagnosis resource This resource is in a different format to our usual resource as it is a recording of a workshop. We received numerous requests to host this workshop but repeated lockdown restrictions made it extremely difficult, so when we had a small window of opportunity we recorded a workshop so that more people would have access to the valuable information. We launched the resource online and hosted a Q&A session which we also recorded. The aim of the resource is to provide an introduction to the dual diagnosis of Down syndrome and Autism. The areas covered in the resource are • What is Down syndrome (DS)? • What is Autism Spectrum Disorder (ASD)? • Prevalence of a dual diagnosis of Down syndrome and Autism • Differential Diagnosis – Physical & mental Health • The importance of the second diagnosis • Diagnostic overshadowing • Screening for Autism The workshop is presented by Geraldine (Dina) Whatnell. Geraldine Whatnell is the Nurse Practitioner Mental Health and Addictions Service, Palmerston North Hospital. Geraldine brings with her nearly forty years of professional skills and knowledge in the specialist area of developmental disabilities (intellectual disabilities and/or Autism) and mental health; alongside this, Geraldine has a wealth of personal lived experience – her younger brother Mark having a diagnosis of Down syndrome and now dementia. Launch of an online Down syndrome and Autism Group The NZDSA will be hosting a quarterly online support group for whānau members who have children with Down syndrome and Autism. The focus of the online group is to connect, share, encourage, learn and empower each other. If you are interested in attending these online sessions, please email me on neo@nzdsa.org.nz and I will add you to the mailing list and we will advertise these meetings via E-news and social media.

Wellbeing Series We are planning to host two more online episodes in this series. • Music Therapy will address how to use music in a way to connect and build relationships with people. It contains practical tips for parents and carers.

This episode will explore how music therapy can help with communication skills, movement, and basic motor skills. The presenter is Music Therapist,

Anthony Manere, from Skylight. • Attachment will cover healthy and unhealthy attachment styles, including how to increase healthy attachment.

Presented by Skylight Facilitator Roni

Saul. We will advertise these sessions in the NZDSA E-news and via Facebook

National Volunteer Week, celebrated between the 19th and 25th June 2022, was an opportunity to honour the collective energies and mana of all our volunteers in the NZDSA.

The theme in 2022 was a time to shine/he wā pīataata and volunteer week is a time to reflect/whaiwhakaaro on all those who give mahi aroha/volunteer for the NZDSA. It is an opportunity to recognise and celebrate all our volunteers. As we joined in Matariki celebrations, I am sure we all hope that it marks a fresh start; and that we enter into a time when we can once again dream/moemoeā and make plans for the future. So thank you to all our volunteers - parents, siblings, whānau, young people with Down syndrome, community members, and supporters who willingly share their skills and talents and time to help our community grow stronger together and for creating spaces to dream and creating opportunities for others to shine in their community.

— Thank you to all our volunteers —

NZDSA’s Annual Appeal July to August 2022 A very important event in the NZDSA fundraising calendar is the NZDSA’s annual telephone campaign. We are fortunate that Southern Stars, a Charitable Trust, supports the NZDSA and runs the campaign on behalf of the NZDSA. This year the campaign kicks off on Monday the 11th of July and runs through to Friday the 26th of August. If you receive a call from a Southern Stars team member, take a moment to thank them for supporting our community and if you do make a donation, thank you! The funding the NZDSA has received from generous donors over a number of years has supported so many valuable NZDSA projects which include hosting the Annual Youth Development camp, hosting workshops for people with Down syndrome, supporting our Online Conference last year, and CHAT 21. In addition, the past appeals have enabled the NZDSA to produce resources like the New Parent Pack, Plan for the Future, Turn the Page, Transition from School resource, Creating a Positive Hospital Experience resource, Play and Daily Routines, Dear Community, Dear Health Professionals, Couch Conversations, Golden Years and Down Syndrome and Autism: A Dual Diagnosis digital stories.

Rose Awards I haven’t received a nomination for a Rose Award for a number of editions. So I would like to encourage you to nominate a deserving individual or organisation for the next edition of CHAT 21. The Rose Awards provide the opportunity to thank individuals or organisations who either support individuals with Down syndrome or the Down syndrome community. Please email me on neo@ nzdsa.org.nz any nominations for an individual, family, or organisation explaining what they have done to “promote the participation of people with Down syndrome in their community”. We will acknowledge the person in CHAT 21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.