What has the CPS office been doing in lockdown?

25 May 2020

Members & What They Are Telling Us!

We contacted every member, which included Families, Adults, and Youth, as a means to check in and to see if we could help support them during the COVID-19 (Coronavirus) crisis!

We have contacted (mostly by phone) and checked in with almost every family with a child with CP. In general families are managing the COVID-19 crisis exceptionally well but there have been some major concerns during the lockdown around food; PPE; carer support; accessing services; connecting families to other families; concerns re replenishing medications; maintaining a “super bubble”; loneliness and boredom and physical injuries due to lifting children without carer.

All feedback from families has been overwhelmingly positive to have received a call from CPS staff!

“I hope you and your family are doing ok and you’re having a lovely Mother’s Day. I wanted to write a note to say thank you for keeping in touch during the lockdown and checking in on families, it’s much appreciated.” Member

“It was really lovely of you to touch base and check in on us in such an unknown time. We are still happy and doing well, but we really appreciated hearing a kind, caring voice when you rang us.” Member

“Thank you for caring enough to contact me today. I really appreciate the level of support and care you show our community.” Member

“Thank you for checking in. As an adult my biggest concern is around PPE, medications, lack of carer support, loneliness and mental health. I am worried about maintaining social connections, fitness and therapy routines. So I very much appreciate your call today and checking in and chatting with me.” Member

Youth Alliance:
Emailed and texted the young people and young adults.This is based on previous feedback from young people about their preferred methods of contact and has been reinforced that social medial is the preferred method from Ministry of Youth Development.

Since lockdown, the Youth Alliance has:
Developed a series of podcasts and blogs which will be launched on May 29 on the CPS website under The Crooked Truth.
Attended intersectoral meetings on Housing; Access Alliance and other Ministries’ committees.
Featured on Tagata Pasifika as part of their multimedia story on eradicating stigma of cerebral palsy in the Pacific Island community, and Jordon’s journey on learning to drive.
Planned rolled out and managed entries into the writing competition.
Presented videos for social media e.g. on washing hands.
Initiated consumer feedback on what young people think is important for transition from paediatrics to adult services.

Communications and Marketing:
Swift initial digital content: Produced six quick content videos with staff encouraging members to remain calm at the beginning of the lockdown. This was incredibly crucial and highly strategic in displaying our staff publicly.
EDMS: We’ve sent five EDMs and were opened 3,230 times. We also sent two Steptember based EDMs to two different audiences: 2016, 2017 and 2019; and 2018.
Website: Visits spiked with 13,207; with the top searches being Contact Us, News and now the Information Hub which is a centralised location of all COVID-19 based material.
Facebook: Our coverage on social media, particularly FB has been great. Posts types have included images, CPS created video, “stories”, links to website, links to COVID-19 website, member engagement. In the first nine days of the nationwide lockdown, our posts reached 40,596 people. As of today, our engagement numbers are nearing 90,000 +.
Facilitation creative branding and messaging direction of Youth Alliance podcast and blog: The Crooked Truth! Transcribed each episode to be used as blog entries for people who have hearing impairments.
Writer’s competition: Designed all the promo material for the Writer’s Competition and distributed on social media and the website.
Designed COVID-19 information hub on the website; leading design direction based on feedback from our team during the Member’s Needs Assessment.

In general:
We have also contacted all our donors to thank them and let them know what we’re doing in response to COVIDA-19 for the membership.
We have been in touch with many Ministries and provided feedback issues members and families have been having during lockdown.
We’ve been working on the website and database to make it more user friendly.
WINZ and MSD funded an art gift pack to every child and young person with CP.
CPS has held a writing competition for young people and adults- results to be announced at the end of June so please send your article in to us soon!! The prizes have been funded by MSD and WINZ.
CPS has also announced an art competition for children and young people. The prizes have been funded by MSD and WINZ
Make A Kitchen Creation initiative launched during initial weeks of nationwide lockdown.

We have had an extremely successfully fundraising strategy over COVID-19 we are grateful for the following grants from:

Ministry of Youth Development for our Youth Alliance.
Anonymous donation for power wheels for children aged 7-11 years.
Rano Community Trust for the researchers salary.
North and SouthTrust for the product and programme managers salary.
E L & J B Sanderson Cerebral Palsy Trust via Perpetual Guardian for room make overs for members in 24 hour care in Christchurch.
Ministry of Social Development and WINZ for the website development; prizes for the art and writing competition and art packs for children and young people.
RewardHub fundraising initiative, and MightyApe who continues to fundraise for CPS.

What we are up to in Level 2:

The staff at CPS will continue to:
Continue to provide advocacy- whilst acknowledging the physical distancing and membership concerns. Contact families and members who were in need during the COVID-19 (Coronavirus) lockdown and ensure all is well. We will also connect people to appropriate services and support. Respond to incoming queries.
Continue to gather member friendly and family friendly information on health & recreation services across NZ for CP COVID-19 website.
Continue to work with external organisations to support members.
Continue to extend the members’ perspective in the Clinical Network- SDR; Intensives; transition; early diagnosis guidelines and early intervention guidelines.
Continue to organise trikes as requested.
Following up with Strat Lab.
Gather research and information advocacy.
Publish and disseminating research and member research.
Continue involvement in University research projects and partnerships.
Maintain involvement in intersectoral, interagency, inter Ministry advocacy groups eg Access Alliance.
Continue work on Youth Alliance development and leadership structure.
Youth Alliance will continue to launch their blogs and podcasts.
Continue to work with other agencies regarding the Beach wheelchairs and mats and harness system.
Fulfil our obligations for our funding from various organisations.
Continue to look for funding for our staff and projects.
Working with MediaWorks after the CPS application into the MediaFund was successful in securing radio module to be used as raising awareness.

To view an infographic of our amazing work, please click the link below:

Board Report 2020