NEWS & UPDATES
Latest news from the Cerebral Palsy Society
31 Mar 2026
Kia ora,
Are you like me – wondering how we are at the end of March already?
Easter and the school holidays are just around the corner and autumn is making its presence felt.
Whatever Easter means to you, and, however you spend the long weekend, I hope it’s an enjoyable one.
Here at the Cerebral Palsy Society, we’ve been keeping busy with all sorts of projects, meetings and providing support to you, our valuable members.
Flexible funding – DSS
The Ministry of Social Development says that “from April, people who use flexible funding through Disability Support Services will have more choice and control over how they use their funding”.
From 1 April:
– People’s allocated budgets for flexible funding will stay the same as they are now. There will be no change.
– The purchasing rules for flexible funding will be removed.
– Flexible funding must still be used in line with people’s plans – but people will have more choice over what supports work for them, including respite options for carers.
– A small number of items will remain prohibited or require pre-approval before spending.
– There will be more support for people to plan and manage their flexible funding in line with their plan. People with Hosts can expect to hear about this support from April onwards.
– People don’t need to do anything to get ready for these changes.
Halberg Games
The Halberg Games kick off in Auckland next week. It’s always a magical event to be at – the atmosphere is absolutely fizzing as youngsters get out there to have fun, to test themselves, prove themselves and make new friends.
The games take place at Kings College from April 10 to 12.
Good luck to everyone taking part – we hope you have an absolutely amazing time.
Thank you to all the volunteers and parents who make sure the participants get there and the event is a success. And a huge thank you to our friends at the Halberg Foundation who pull this awesome experience together each year.
Oceania Academy conference
At the beginning of March a few CP Society representatives travelled to Hobart to attend the 13th biennial conference of the Oceania Academy of Cerebral Palsy and other Childhood-onset Disabilities.
The conference was a wonderful opportunity to learn, share and network with our counterparts from around Oceania.
We were absolutely delighted to see Cerebral Palsy Society’s researcher and member support advisor Amy Hogan named as co-president of the Oceania Academy. It is believed Amy is the first person with lived experience to hold a presidency role within all the worldwide Academies. Congratulations Amy!
You can read more about Amy’s appointment here: www.cerebralpalsy.org.nz/new-appointment-lays-groundwork
Pictured, left to right: Past Co-President Sarah McIntyre, from left, new Co-Presidents Amy Hogan, and Georgina Clutterbuck and Past Co-President Alicia Spittle.
Also at the conference, Anna Mackey, pictured below, Project manager – New Zealand Cerebral Palsy Register, presented on “Health funding for people with neurological conditions in Aotearoa New Zealand”.
CP Society Executive Committee member, Dr Meg Smith, pictured below, presented her research “Adjusting to a different way of parenting – The experiences and perspectives of mothers raising a child with CP in NZ”.
It was a wonderful trip, and Amy is working hard on turning what she learnt into articles to share with you all in due course.
Accessible Futures Summit
Just last week, the Cerebral Palsy Society’s chairman Daniel Clay, and three members of the Society’s Advocacy Committee (Amy Hogan, Melanie Louden and I) went to Wellington to attend Access Matters Aotearoa’s Summit and Parliamentary Reception.
Amy is co-chair of Access Matters (along with Dr Rebekah Graham, national executive officer of Parents of Vision Impaired NZ) and represented the Society well by sharing our members’ experiences when it comes to accessibility.
From left: Three of the members from the Cerebral Palsy Society’s Advocacy Committee, Amy Hogan, Melanie Louden, Clare Williams, and Society chairman Daniel Clay.
After the Summit there was a Parliamentary Event with a number of MPs present. The event served to summarise the work carried out during the Summit and Daniel was on a panel that spoke on the topic “What will it take to change the system?”.
From left: Clare Williams, Daniel Clay, Melanie Louden, Tim Clarke (Senior Partner at Russell McVeagh – Access Matters’ pro bono law firm), Amy Hogan and Dr Rebekah Graham. Photo: Vishwas Sharma
The Parliamentary Event included the launch of Kōrero for Change – Insights and Actions. The document is a collation of the thoughts and outcomes from the Kōrero for Change webinars held by Access Matters.
Click the button below to read more and watch the live stream from the Parliamentary Event.
CP Toolkits
Happy Birthday to our Early Years Kete
March 11 marked 1 year since we launched Cerebral Palsy – Hōkai Nukurangi: The Early Years Kete.
We’ve had wonderful feedback about the toolkit and we encourage the family and whānau of our 0-5 year old members to take a look at it, share it with people you know, your child’s GP, their early childhood educators etc.
It’s such a useful tool!
We’ve published it in English, Te Reo Māori, Samoan and Tongan.
Survey – Primary Years Kete
We’ve started work on the Primary Years Kete and to kick things off we’ve sent a survey to the parents of our 5-11 year old members. We want to pick your brains about those primary school years – what worked, what didn’t, what do you wish you knew, what advice do you have for others?
The survey closes on April 7.
Please take a few minutes to share your thoughts and experiences. Your input will help shape the content of our next toolkit.
Cerebral Palsy Society families who take part and provide us with their name and email address will go in the draw to win one of six $50 supermarket vouchers.
getMoving
getMoving has had a few changes, which I’m really excited to share with you.
getMoving is our weekly customised exercise programme for 6-21 year olds in Auckland, run by the awesome team from Functional Adaptive Movement™ Ltd (FAM™).
– The venue has changed to 09 Thrive, 2/49 Sainsbury Rd, Mt Albert. (Great news – there’s plenty of parking.)
– The one-hour sessions are now held on Saturdays from 11am-12pm.
If the new day and time works for you or your child and you want to check out getMoving, then come and take a look!
Oakley Herd – softball success
Last month I mentioned the success of 13-year-old CP Society member Oakley Herd who had been selected to represent New Zealand in softball.
Oakley went to Sydney, Australia to play for the ISA New Zealand U14 Boys Softball team.
The team competed against Australia and Japan, in the Blacktown International Junior Challenge Softball Tournament from March 17 to 29.
Oakley Herd in action at the tournament. Photo: Nixon Herd
Mum Keziah says Oakley and his teammates did well at the tournament, and the highlight was when they beat Japan 2-1 in their last game.
Congratulations Oakley – what a great experience.
Auckland FC player escorts
Five lucky members of the Cerebral Palsy Society had a wonderful experience on March 21 when they were amongst a group of kids from the Halberg Foundation who escorted Auckland FC players out the tunnel and onto the pitch at Go Media Stadium before the match against Mcarthur FC.
We were lucky enough to get hold of these great photos of Ashley, pictured with Jesse Randall, and Flynn, with Francis de Vries, as they walked out onto the field.
Photos: Tristram Pearson
Ashley and Flynn had a great time and thoroughly enjoyed the day and the kindness of the AFC players and volunteers.
Thanks to the Halberg Foundation and Auckland FC for giving our members such great experiences.
The Review magazine – latest edition
The latest edition of The Review was sent to members last week. If you haven’t had a chance to take a look yet – be sure to do so.
In this edition you’ll meet young Charlie who has flourished thanks to Riding for the Disabled, and the badminton duo who travelled to Bahrain to represent Aotearoa.
Allison writes about moving into residential care, and actors and performers are given the chance to shine.
“A different way of parenting” and genetics are explored in our research pages.
* If you receive The Review in your letterbox, and would prefer to receive it via email only, please drop us a line and let us know. Send an email to cpsociety@cpsociety.org.nz with “The Review – hard copy only” in the subject line. You’ll be helping us save costs and save trees.
Neurological Foundation article
The Neurological Foundation featured Cerebral Palsy – Hōkai Nukurangi in the latest edition of its magazine, Headlines.
“New Zealand will soon have a national research platform dedicated to cerebral palsy, thanks to a Neurological Foundation platform grant of nearly $1M.
“The platform is an evolution of the existing cerebral palsy register, shifting our health system from simply recording births to collecting genetic, MRI and long-term data – providing answers to families and opening doors to treatments during the critical early months of life.”
Professor Susan Stott, right, with NZ Governor-General and Neurological Foundation patron Rt Hon Dame Cindy Kiro.
Huge thanks to the Neurological Foundation for the incredibly generous grant. We’re excited to see what comes from the grant and the work that goes into the national research platform.
New e-Card suppliers
We’re delighted to welcome the companies and service providers that have come on board as e-Card suppliers in the last month.
getOutThere
Driving Miss Daisy – Kapiti
Metro Cabs Limited – Rotorua, Tauranga, Invercargill
getPhysical
PhysEx Rehabilitation & Performance – Tasman
Christiana Barker – Physiotherapist – Auckland Central
Lions Den Gym & Fitness Centre – Stratford, Taranaki
getThis&That
Shoe Clinic – Invercargill
Do you have a potential new supplier in mind? There’s information about onboarding a new supplier here – www.cerebralpalsy.org.nz/member-services/e-card-funding/get-suppliers
Coffee group
Coffee group kicked off for 2026 at the start of this month. It’s been great to hear about everyone catching up and enjoying the opportunity to reconnect.
Groups are held in Auckland (Glenfield, St Lukes and Manukau), Whanganui, Masterton, Wellington and Christchurch (Shirley and Addington).
Each Cerebral Palsy Society member is welcome to bring a companion, support worker, family or whānau member with them. The Cerebral Palsy Society will provide up to $15 worth of refreshments for each member and for one of their guests.
If you’d like more information about your local coffee group, please call us on 0800 503 603 or email cpsociety@cpsociety.org.nz.
e-Card tips
We thought we’d share a few important e-card tips with you……
How to check your balance:
– Go to https://ecardsolutions.nz/portal/cps/
– Check your last receipt
– Or go to www.cerebralpalsy.org.nz, click the Dashboard button, sign in and click the “Check Your E-Card Balance” button.
If you’re making online purchases, be sure to do your shopping 2-5 work days before the funding round ends. This will give the supplier enough time to process your order before the funding expires.
If you want us to consider bringing on a new supplier, be sure to get the process underway at least 4 weeks before a funding round ends. It can take a little while for all the onboarding steps to fall into place.
If you haven’t received the automatic funding top up, don’t wait till the day you need your funding to ask us to top up your card. Top ups are only done on Tuesday and Friday mornings.
Automatic top ups at the start of a funding round are not processed on the first day of the month if it falls on a weekend.
Any funds that haven’t been spent by midnight on the last day of a funding round will expire and be removed from your card.
If you’ve got any questions about using your e-card phone 0800 503 603 between 9am and 3pm, or send an email to cpsociety@cpsociety.org.nz
Research opportunities
There’s plenty of research going on for you to take part in.
– Looking for Lived Expertise to Guide Research – The Motion Connect study aims to collect and share information about how people with neuromuscular conditions walk (clinical gait data) to inform treatment options for conditions such as cerebral palsy, spina bifida, and muscular dystrophy. Researchers are looking for people with lived experience of these conditions, or their carers or representatives, to join the research team and provide input and feedback throughout the research process.
Researchers expect to meet with participants up to 10 times for 1-hour meetings online in 2026 and 2027. You will be paid for your time at approximately AU$50/hr.
– The United Cerebral Palsy Association of Hawai’i is conducting The Impact of Aging with Cerebral Palsy Survey – open to adults with cerebral palsy who are 20-years of age older and/or their caregivers
– Assistive Technology Survey – Intopia invites you to take part in the Assistive Technology Survey 2025, a survey exploring how people across Australia and Aotearoa New Zealand use and experience assistive technology
– Free gait training sessions – weekly sessions with Auckland University at the Newmarket campus on their positive-pressure (“anti-gravity”) treadmill.
You can read all about these projects on our Research Opportunities page.
What’s On
Adaptive Football Festival
Eastern Suburbs AFC is proud to be hosting a free Adaptive Football Festival next month. No registration required, all ages and abilities welcome.
Sunday, April 18
10.30am
Madills Farm Reserve, Kohimarama, Auckland
Outward Bound
Outward Bound is hosting its 7-day Youth Activate course for 16-18 year olds with a physical disability or impairment.
It’s designed for young people with a physical disability, including those who use manual wheelchairs or walking aids.
Students who are blind, have low vision or a deaf or hard of hearing are also encouraged to apply.
Course dates: 21 – 27 September 2026.
The course will start and finish in Picton.
The course is fully funded thanks to the generosity of a sponsor. Participants will need to cover the cost of travel to and from Picton and the cost of completing an Outward Bound medical form with their GP.
For more information: www.outwardbound.co.nz/courses/youth-activate
That’s all from me. The team and I wish you all a happy Easter, and to everyone who has school holidays coming up, we hope you have a great time with your family and friends.
Ngā mihi,
Clare Williams
General Manager
