News for our community

And some awhi x

Oct 17, 2023

Kia ora friends,

We hope you are well and coping OK. We know it’s a hard time for many right now. Here’s a short round-up of things we thought the community would like to know about. We will keep it short as we know everyone is flat out and feeling tired!

Post-election wrap-up

Awhi Ngā Mātua co-founder Elizabeth Goodwin and director Emily Writes had a wee chat about how things will shake out after the election and what we can do to support each other. Watch it below:

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A post shared by @awhi_nga_matua

Rare Disorders New Zealand have a survey out

Rare Disorders New Zealand is the only umbrella group for rare disorders in New Zealand. They provide a strong voice to advocate for an equitable healthcare system that works for the 300,000 Kiwis with a rare condition. About half of those who have a rare disorder are children.

Rare Disorders NZ have a platform and connector hub to link people to information and rare disorder groups specific to their disorder, and help people navigate different systems. If you’d like more info you can contact them directly at enquiries@raredisorders.org.nz or visit their website. You can also find them on Facebook.

Their guide Raising a child with a rare disorder: A guide for parents and caregivers living in Aotearoa New Zealand is a great resource. They also have an excellent resource on how to get financial assistance.

Their major survey is now out. You can access it directly here.

Currently, no comprehensive data is collected on rare disorders in New Zealand, which is why our biannual surveys are so vital to fill the current data gaps. Through this survey they hope to collect much needed data on what it means to live with a rare disorder in New Zealand in 2023 and what barriers people continue to face within the health and social systems to access the care they need.

It is crucial to the success of their survey to have as many respondents from the rare disorder community as possible. So please share it wide!

Courage Club podcast for parents of disabled, neurodivergent and medically fragile tamariki

It’s hard to talk about, and that's exactly why we need to. In Aotearoa, disabled children are most at risk of sexual harm - and that fact hurts. Talking about it and normalising brave conversations - one kōrero at a time - is a protective factor in itself. But it can be hard to know where to start.

This podcast navigates the tough stuff, with all the feels - tears and laughter and through sharing candid experiences. The Courage Club is intended to empower other parents to begin these brave chats, teaching our children about their body and their needs, navigating carers and visitors in and out of the home, and building the foundations for their positive sexual wellbeing and identity which all contributes to keeping our Deaf, disabled and neurodivergent children safe when it comes to preventing child sexual abuse.

We hope that The Courage Club will be the first step towards brave, bold, powerful conversations that make our homes and communities safer for our precious tamariki.

The Courage Club podcast and supporting resources are available now at courageclub.co.nz and on podcast platforms Spotify, Youtube and Apple Podcasts.