News from the NZDSA

A selection of articles, stories and updates from the New Zealand Down Syndrome Association

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New Zealand Down Syndrome Association

New Zealand Down Syndrome Association

We are the National organisation representing the Down Syndrome community in New Zealand.

TODAY! 7:30pm, make sure your voice is heard. Community Hui – Disability Support Services Bill: Sharing Information, Taking Action and Making SubmissionsWe are hosting an online Community Hui to come together, share information, and support one another to understand the Disability Support Services Bill.This will be a space to meet and discuss what the Bill means for people with Down syndrome and their whānau. We will share useful information, outline possible routes for action, and provide submission templates to support people to have their say.We also want to hear from our community. Your experiences and perspectives will help inform the NZDSA submission and ensure our collective voice is reflected.At the hui, we will also work together to develop a consistent message and key points for our community to use in their submissions, so we can strengthen and align our collective voice.This is urgent. Submissions close soon. We need as many voices as possible from our community to take part. Our community voice matters, and with limited time, we need everyone to get involved, get informed, and help shape our response through submissions.We encourage people to contribute to both the NZDSA submission and to make their own individual submissions before 1.00pm on 12 June.Please RSVP to our Facebook event:www.facebook.com/share/18yGHHD1eH/Or join directly here:Date: 3 June 2026Time: 7:30pm (Auckland, Wellington)Join Zoom Meeting:us02web.zoom.us/j/86440129117...Meeting ID: 864 4012 9117Passcode: 852150Read the bill here Disability Support Services Bill | New Zealand Legislationwww.legislation.govt.nz/.../2026/312/en/latest/Dr Huhana Hickey has also provided a plain language breakdown of the Disability Support Services Bill. huhana62.substack.com/p/here-is-a-plain-language-breakdown?utm_id=97758_v0_s00_e233_tv2_tp1_a1dem...Here is an Easy Read translation of an MSD Disability Support Services Factsheet regarding the Disability Support Services Bill.You can find the Easy Read and other alternates at this link:www.disabilitysupport.govt.nz/improving-dss/dss-bill/factsheethuhana62.substack.com/.../here-is-a-plain ... See MoreSee Less
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This Wednesday - Community Hui – Disability Support Services Bill: Sharing Information, Taking Action and Making SubmissionsWe are hosting an online Community Hui to come together, share information, and support one another to understand the Disability Support Services Bill.This will be a space to meet and discuss what the Bill means for people with Down syndrome and their whānau. We will share useful information, outline possible routes for action, and provide submission templates to support people to have their say.We also want to hear from our community. Your experiences and perspectives will help inform the NZDSA submission and ensure our collective voice is reflected.At the hui, we will also work together to develop a consistent message and key points for our community to use in their submissions, so we can strengthen and align our collective voice.This is urgent. Submissions close soon. We need as many voices as possible from our community to take part. Our community voice matters, and with limited time, we need everyone to get involved, get informed, and help shape our response through submissions.We encourage people to contribute to both the NZDSA submission and to make their own individual submissions before 1.00pm on 12 June.PLease RSVP to our Facebook event:www.facebook.com/share/18yGHHD1eH/Or join directly here:Date: 3 June 2026Time: 7:30pm (Auckland, Wellington)Join Zoom Meeting:us02web.zoom.us/j/86440129117...Meeting ID: 864 4012 9117Passcode: 852150Read the bill here Disability Support Services Bill | New Zealand Legislationwww.legislation.govt.nz/.../2026/312/en/latest/Dr Huhana Hickey has also provided a plain language breakdown of the Disability Support Services Bill. huhana62.substack.com/p/here-is-a-plain-language-breakdown?utm_id=97758_v0_s00_e233_tv2_tp1_a1dem... ... See MoreSee Less
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We hope you are all having a great King's Birthday weekend!The latest edition of CHAT 21 is now online for you to enjoy.This edition is led by two big community moments: World Down Syndrome Day celebrations from around Aotearoa and Special Olympics National Summer Games highlights from Christchurch.Alongside those features, you’ll also find:Part two of our Virtual Down Syndrome Conference overview (Improved Support – Improved Lives) and all your favourite regular sections including Around the world, On the socials, NEO notes, and community updates.Head to the online journal here: Part two of our Virtual Down Syndrome Conference overview (Improved Support – Improved Lives) and all your favourite regular sections, including Around the world, On the socials, NEO notes, and community updates. ... See MoreSee Less
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Community Hui – Disability Support Services Bill: Sharing Information, Taking Action and Making SubmissionsWe are hosting an online Community Hui to come together, share information, and support one another to understand the Disability Support Services Bill.This will be a space to meet and discuss what the Bill means for people with Down syndrome and their whānau. We will share useful information, outline possible routes for action, and provide submission templates to support people to have their say.We also want to hear from our community. Your experiences and perspectives will help inform the NZDSA submission and ensure our collective voice is reflected.At the hui, we will also work together to develop a consistent message and key points for our community to use in their submissions, so we can strengthen and align our collective voice.This is urgent. Submissions close soon. We need as many voices as possible from our community to take part. Our community voice matters, and with limited time, we need everyone to get involved, get informed, and help shape our response through submissions.We encourage people to contribute to both the NZDSA submission and to make their own individual submissions before 1.00pm on 12 June.Here is a link to our Facebook event:Community Hui – Disability Support Services BillOr join directly here:Date: 3 June 2026Time: 7:30pm (Auckland, Wellington)Join Zoom Meeting:us02web.zoom.us/j/86440129117?pwd=udYCyOyuDpmNnp5gDhYnOiwgd1eJag.1Meeting ID: 864 4012 9117Passcode: 852150Read the bill here Disability Support Services Bill | New Zealand Legislationwww.legislation.govt.nz/bill/government/2026/312/en/latest/Dr Huhana Hickey has also provided a plain language breakdown of the Disability Support Services Bill. huhana62.substack.com/p/here-is-a-plain-language-breakdown ... See MoreSee Less
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The Disability Support Services BillAt this stage, we are actively working through the detail of the Bill and what it means for people with Down syndrome and their whānau.Our position is grounded in representing our community and ensuring the rights, dignity, wellbeing and everyday inclusion of people with Down syndrome and their whānau are upheld in any disability support system. Any legislation must reflect the principles of Enabling Good Lives and acknowledge the significant contribution parents and whānau make through meaningful recognition and appreciation of carers, support for their health and wellbeing, and more responsive financial support.At this stage, we have concerns about the lack of meaningful prior consultation with the disability community and the potential implications for disabled people, and whānau. We are also concerned about the language used in the announcement about families and whānau having responsibility “in the first instance” for supporting disabled family members, as this is likely to cause understandable anxiety for many people already under significant and sustained pressure. We will be advocating on this point as we engage further with the detail of the Bill.We will always advocate for the wellbeing of parents and whānau, alongside the rights and inclusion of people with Down syndrome.Next steps for the NZDSA include:• Encouraging our members and wider community to read the Bill• Hosting an online hui to hear directly from people with Down syndrome, carers, and whānau• Gathering feedback to inform our collective responseWe will continue to engage closely with our community and share opportunities for engagement.Please read the following for more information:www.beehive.govt.nz/release/bill-strengthen-disability-supportwww.legislation.govt.nz/bill/government/2026/312/en/latest/#LMS1607979Community responseWhy a new disability bill is being called ‘authoritarian’ and Trumpian - three news ft Carers NZwww.stuff.co.nz/nz-news/360981060/why-new-disability-bill-being-called-authoritarian-and-trumpianBreaking: the Government is attacking disabled people and their carers. Again. - Emily Writes ft Rebekah Grahamwww.emilywrites.co.nz/breaking-the-government-is-attacking-disabled-people-and-their-carers-again/Government to overturn court decision recognising family carers as employees | StuffDisability Support Services Bill ‘worst piece of legislation I’ve ever seen’ – advocate and Advocate condemns Govt's new Disability Support Services Bill - ft Jane Carriganwww.newstalkzb.co.nz/news/national/disability-support-services-bill-worst-piece-of-legislation-i-...www.newstalkzb.co.nz/on-air/heather-du-plessis-allan-drive/audio/jane-carrigan-disability-advocat...Substack posts:The Government Says This Bill Strengthens Disability Support. Many Disabled People Disagree - Huhana Hickey huhana62.substack.com/p/the-government-says-this-bill-strengthensWe Have Seen This Bill Before - In 2013 They Called It Clarity Too - Nick Ruanenicholasruane.substack.com/p/we-have-seen-this-bill-before-inMeans testing for disability supports? - Rebekah Graham nicholasruane.substack.com/p/we-have-seen-this-bill-before-in ... See MoreSee Less
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