Community news and views
How are you?
Kia ora Awhi community,
How are you doing? We are grateful to everyone who gave their feedback to the Disability Services Taskforce. We will let you know if we hear any updates about the consultation.
Here is some news and opportunities from around Aotearoa for the disability sector. We hope you are well - we are working hard on upgrading our website and we can’t wait to show you our progress!
Petition for a plan to implement the Rare Disorders Strategy
We are deeply concerned about Te Whatu Ora | Health New Zealand's refusal to engage with Rare Disorders NZ and our community to make a plan to implement New Zealand’s first Rare Disorders Strategy.
The rare disorder community has been calling for action for over 20 years to improve services for people living with a rare disorder. The Government has finally delivered a Rare Disorders Strategy, but unless it is implemented it will not be worth the paper it’s written on.
People living with a rare disorder cannot be expected to continue to wait for better health and wellbeing. They have already waited too long.
Writing from the community
From
- I am tired of consultation - It is exhausting and for what?From
Why the recent Pharmac changes don’t fix access barriers to ADHD medicationTāngata whaikaha join the nationwide hīkoi for Te Tiriti
From
in the PSA Magazine - The Government’s attacks on the disabled are relentless.
Webinar on emergency preparedness
Access Matter's next Kōrero for Change webinar is about ways to make emergency preparedness inclusive and effective for all in Aotearoa New Zealand.
When:Wednesday11 December 2024, 1.00pm to 4.00pm
Where:Via Zoom
Register:Register for the emergency preparedness webinar
Accessibility: please advise your requirements on registering.
The full line up of speakers will be available next week. It currently includes:
Dr Michelle Villeneuve, Associate Professor, Deputy Director from The University of Sydney's Impact Centre for Disability Research and Policy,
Prudence Walker, Disability Rights Commissioner
Mojo Mathers, Chief Executive, Disabled Persons Assembly
Juliana Carvalho, Access Matters Aotearoa Lead Campaigner
There will also be representatives of emergency management experts from NEMA, Te Whatu Ora, and NIWA, and Renee Corlett from Wellington Region.
Find out more about the Emergency Preparedness webinar.
Ōtaki Summer Camp
Have you heard of Ōtaki Summer Camp? It’s an annual three day camp for politically keen people aged 17-35 (ish). With talks by seasoned activists and change makers, discussions, hikes and music. All on an organic farm in Ōtaki. From 17-20 January, 2025. At a ticket price that’s as low as possible, so everyone can join in.
Disability and housing survey
A research team from He Kāinga Oranga - Housing and Health Research programme at the University of Otago Wellington are looking at how children with disabilities and their whānau feel about the houses they have lived in.
They want to know whether their houses are accessible, and what works and what doesn’t work for housing for children with disabilities. He Kāinga Oranga hopes to use this research to advocate for a housing system that better supports children with disabilities and their whānau.
They are looking for parents or caregivers with children with disabilities to participate in an anonymous online survey, which has some short answer questions and multi-choice questions. The survey asks about your experiences and opinions around housing, as well as some demographic questions. It will take about 10-20 minutes, depending on how much you’d like to share.
Once you complete the survey, you can choose to enter your contact details to go into a draw to win one of two $50 vouchers from a supermarket of your choice (Woolworths, Pak'nSave or New World).
In the news
Residential schools for disabled students failing children and their families, report finds
Disabled students face difficulties accessing support in tertiary education
Facing genocide while disabled - Palestinians with disabilities in Gaza have experienced immense suffering due to displacement and the collapse of the healthcare system.
Disabled abuse survivors still face inadequate care
Upper Hutt development a space disabled folks can call home
Blind and disabled advocate Jonathan Mosen to quit NZ in frustration
Disabled man claims he was abused, neglected while in supported living
'An awful life': Former students of deaf schools speak out about abuse
'These children are not being seen' - Severely disabled kids lose teacher aide hours
Emily named Kiwibank Local Hero Medallist
Congratulations to our director Emily Writes who was named a Kiwibank Local Hero Medallist in the Kiwibank New Zealander of the Year awards.
For over a decade, author and advocate Emily Writes has generously used her platform and heartfelt, relatable writing to give voice to New Zealand's most vulnerable people. A tireless advocate raising two young tamariki of her own, Emily consistently makes and provides resources, spends her time volunteering, and truly grows community.
Whether fundraising for diabetes pumps, raising awareness about autism, or championing parents across Aotearoa, Emily is a driving force for positive change – bringing thousands of others with her in the process. She is deeply involved in community efforts, from organising events and creating safe spaces for parents and children to speaking up at parliament and marches. Emily also founded the Courage Club, a podcast that addresses important issues like disability and child safety. If it's a cause close to her heart, she'll get stuck in – fundraising, showing up, and speaking up, all to build an Aotearoa our kids can be safe and thrive in.
We hope you have a great weekend. And please give us your feedback on anything you’d like us to share in this newsletter or anything you’d like us to know by commenting below.
Arohanui from the Awhi team.