NEO Notes

Kia ora

Once again, the start to the new year has been bumpy, and the NZDSA’s thoughts are with our members impacted by the recent floods in the North Island. COVID-19 and now the floods have highlighted the existing and ongoing systemic discrimination that people with disabilities face. It is also apparent via anecdotal reporting and stories in the media, that in times of crisis, disabled people and their whānau are not adequately considered, and if in crisis, help is usually from the personal support that people have created and from community disability groups who try to disseminate information and provide practical support wherever possible. It is widely recognised that disabled people and their whānau who are connected to others in the community, are recognised as having better life outcomes than people who are disconnected and experience isolation. I know that I have heard so many stories of people in the disability community helping each other endure lockdowns, isolations, and now recovery from the floods.

I know that I have learnt life-changing lessons from disabled people and whānau, and when I am faced with challenges or need to solve a problem, my first call is to other parents and whānau in the Down syndrome community, as they are a source of profound wisdom and guidance.

I thought this theme of support and connecting our community is another response to the question “What does the NZDSA do?”

I have previously shared in editions of CHAT 21 that the NZDSA has a number of foci which include:

• 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;

• creating and providing a hub of resources across a wide range of topics and issues for our members, professionals and the wider community, and

• educating and empowering our members and the wider community. All of the above-mentioned foci are critical, but if we look at why the NZDSA was established in 1981, we see that it was to bring parents together so that they could support each other, and forge change in society so that they and their children could enjoy a good life. This purpose has not changed for the NZDSA as we believe that it is only through supporting and connecting members of our community that we can achieve all the work that the NZDSA does.

The NZDSA cannot connect all our members nationally in-person, but we offer many online opportunities to connect and we recognise the invaluable work of our regional groups who offer gatherings like coffee mornings, regular social events, education events, and support youth social groups. Together we are building a nationally connected and supportive community.

The NZDSA has always prioritised ways to connect our community, and has recognised the value of hosting events that bring our community together. This ranges from facilitating new parents meeting faceto-face or online with a support parent, to the NZDSA National Achievement Awards hosted at Government House. The NZDSA recognises that each event that brings people together is an opportunity for people to make new or renew connections and this helps to create a support system. Unfortunately, COVID-19 stopped the NZDSA from hosting events like workshops, the Youth Development Camp and our Regional Meet and Greet sessions, but we are pleased to announce that we have plans to re-introduce events in 2023, such as STRIVE and STEP-UP workshops, the Youth Development Camp, and the NZDSA National and Regional Development Day. The NZDSA is also very pleased that once again we will be engaging with members in our region as we host a series of Kōrero and Kai sessions. These sessions will be an opportunity to meet with the NZDSA National Committee and staff, learn more about Enabling Good Lives, and to find out more about the local needs of the community. These valuable conversations will ensure that the NZDSA includes local voices when working nationally.

It is important to recognise that the NZDSA could not provide support to our community without the amazing work of all the volunteers in the regions and this includes all the hours that the Zone Representatives commit to their role on the National Committee.

I have also shared below a few events in the 2023 Calendar that will provide opportunities for you to connect to others in the NZDSA community. We would love to hear about all the formal and informal connections you have in the Down syndrome community. We would like to create a collage of photographs of activities and events that connect you to the Down syndrome community. Please send these to neo@nzdsa.org.nz

World Down Syndrome Day (WDSD)

The theme for the WDSD 2023 is With Us Not For Us. The global message that Down Syndrome International (DSi) will be promoting is “With Us Not For Us is fundamental to a human rights-based approach to disability”. The theme has strong synergy to Enabling Good Lives (EGL) which is also a transformational shift from a charity and medical model of disability that views disabled people as needing things done for them, to a social model of disability that recognises the fundamental rights of disabled people to enjoy full citizenship rights just like everyone else. This message from DSi, just like EGL, emphasises the importance of a person-directed approach and the right to make personal decisions about having choice and control in all aspects of their lives.

Throughout 2023, the NZDSA will be exploring this theme and we invite all our members to share with us what “With Us Not For Us” means for them. We hope you will join us in creating awareness about this important global message.

This year DSi has also introduced a campaign that focusing on Legal Capacity and Supported Decision-Making. This is of particular relevance in New Zealand as Te Aka Matua o te Ture | Law Commission is undertaking a review of the law relating to adult decision-making capacity.

What happened in the last quarter of 2022

• To mark Down Syndrome Awareness Month in 2022, we hosted the 2nd online conference from 3-21 October, continuing the theme of inclusion. We hosted 21 events at the conference and had over 700 registrations. The presentations were varied, but the key foci were early intervention, education, employment, creating inclusive communities as well as inspirational stories. We offered sessions for parents, whānau, professionals, self-advocates and siblings. The 27 speakers hosted more than 1,300 minutes of webinars, Q&A sessions and social gatherings.

• STRIVE celebrated their 10th anniversary and we marked the occasion with a hybrid face-to-face and online celebration with members of STRIVE and STEP-UP. At this event STRIVE introduced the new members joining STRIVE as well as announcing the establishment of the STEP-UP group and introduced the members of STEP-UP. In the next edition of CHAT21, STRIVE will share a little more about their 10-year journey, introduce you to the new STRIVE members and share more about the establishment of STEPUP.

• The NZDSA hosted two hybrid selfadvocacy workshops. Self-advocates prefer to call these Funshops as they say learning should be fun. We hosted the first two-day Funshop in Wellington in November and a second in Christchurch in December.

• We also hosted a number of online events (see photos on page 23).

• The Employment Resource was launched and is now available on the NZDSA website. A special thanks to Georgina Kirk and Kate Maroulis from Kindred - Psychology at Work, for partnering with the NZDSA to produce a range of resources to support more people with Down syndrome into work. For further information about Kindred, visit www.kindredwork.co.nz

We also hosted the final session in the Well-being Series. This series consists of eight digital resources which include a range of qualified counsellors, therapists, and psychologists sharing strategies for addressing well-being, grief, and finding supports. This series is available on our website and consists of the following sessions:

• Strengthening ourselves through challenging times - Kyra Lindsey

• Strengthening my skill set - Kyra Lindsey

• Mindfulness - Debbie Buddle

• Coping with Change - Debbie Buddle

• Attachment - Roni Saul

• Music Therapy - Anthony Manere

• Managing Your Feelings - Dr Mark Sinclair

• Well-being – STRIVE (the NZDSA’s leadership and advisory group for people with Down syndrome).

The NZDSA continues to advocate on a range of key issues at stakeholder meetings.

• COVID-19 remains an issue in our community, so in addition to systemic advocacy, we have collated and disseminated information in the COVID-19 Bulletin. We have also secured some funding to help our community members who are isolating due to COVID-19. So, if you or someone you know in the Down syndrome community are isolating, please contact grace@nzdsa.org.nz to see if we can see help with providing some practical support

• The NZDSA also produced two new resources: ‘Hospital Stays’ and ‘Down syndrome in New Zealand’. Both of these resources are available on our website.

It was so exciting to once again meet for the NZDSA Youth Development Camp on 25-27 November at Vaughan Park Retreat Centre and MERC, in Long Bay, Auckland. The weekend was action-packed with exciting and sometimes challenging activities, great food, lots of laughter and dancing, and great company. It was an incredible weekend so if you are interested in attending the next one, please see the notice page for more details.

What’s coming in 2023

• The NZDSA is heading to Whangārei in Northland and hope to meet many members of our community.

• STRIVE Afternoon Tea Club online meetings for people with Down syndrome start on the 4th of March at 5pm and will be hosted regularly.

• The Big Connect will be back to celebrate World Down Syndrome Day. Join us online at 7pm on Tuesday the 21st March.

• The NZDSA is hosting the NZDSA National and Regional Professional Development Day for our regional groups in Auckland on the 31st March and 1st April.

• Opportunities for online and in-person events to explore Enabling Good Lives.

• The NZDSA is planning to visit more regions in 2023.

• Self-advocacy workshops for people with Down syndrome.

• A variety of online support groups and education online sessions.

• The 3rd Virtual Conference will be held from the 3rd to the 21st October 2023 to mark Down Syndrome Awareness Month.

• The Youth Development Camp, 24th26th November at Vaughan Park, Long Bay, Auckland.

Information about all these events and more will be shared via CHAT 21, social media and Enews.

Top: A rest break for STRIVE and STEP-UP at the November Funshop

Centre: Group pic at Youth Development Camp 2022

Bottom: Conquering great heights at the Youth Development Camp

Rose Awards

I mentioned earlier how important support is for our community and the Rose Awards is an ideal opportunity to recognise and 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 “support or promote the participation of people with Down syndrome in their community”. We will acknowledge the person in CHAT21 and will post them a letter outlining why they were selected and include a box of Rose’s chocolates.

Notices

Just a reminder to look at the NZDSA notices which include a call:

• for adults with Down syndrome to tell their life stories

• for expressions of interest in accessing the NZDSA Numicon kits

• for expressions of interest in attending the Youth Development Camp

• to share your employment stories.

Enjoy your WDSD celebrations and remember to send your photographs to either editor@nzdsa.org.nz or neo@nzdsa.org.nz

Hei konā mai Zandra