By Marusha Pride
Wednesday, 23rd November, was the launch of CPActive’s Blaze the Trail campaign. A world first
campaign that was design by an incredible group of young people to build better pathways from
school to work. Fourteen CPActive champions- Sophie Geeves, Eric Barrett, Nicholas Lapsley, Eirean
Wood, Meret Hassanen, Declan Lee (who, unfortunately, could not be there in person), Jack
Calderan, Jack McCutcheon, Nicole Kozeji, Aaryan Shah, Tahlia Blanshard, Joseph Issa, Sasha
Dansereau, and me, Marusha Pride, launched this campaign at Barangaroo. We were joined by the
Shadow Minister for Disability, Kate Washington.
Our presentation covered three main areas: Provisions for exams at school and University,
pathways for teachers with disabilities to enter the teaching workforce, and a statewide initiative to
help develop professional pathway for students with disability. Our presenters shared their
experiences in each of these areas. Tahlia kicked off the launch with an introduction and her
experiences with provision in university. We had Nicole and Sophie speak about exam provisions in
both school and university. Next up, Aaryan and Eireann talked about having more teachers with
disabilities in the teaching field. Then Jack C and Meret shared their experiences with pathways into
larger workplaces and businesses. We were honoured to receive positive feedback from the Shadow
We had the opportunity to chat with our guests and make connections while the interviews
with the remaining champions were being conducted. Then we went to the pub to celebrate our
launch with Teigan Butchers. All in all, it was a great day!
Our third and final ‘Youth Lab’ was held on 14th September, where young people with cerebral palsy came together to help inform a pilot program that teaches young people with CP around Australia how to use networking to their advantage.
NextGen ambassador Meret Hassanen gave insights into how she was able get into the tough media industry through the power of networking.
“I was fortunate enough to do an internship with the ABC as part of my degree and I kept in touch with the manager I worked with… I emailed her and asked for feedback. She rang me one day out of the blue and said ‘I have a job going in my team, you should apply’ and that’s how I got my first job with the ABC and all the rest have taken a similar track,” Meret said.
Participants shared their excellent tips and tricks of the trade in finding and utilising your best networks.
“Networking equals having access to providers who work towards supporting your through achieving your goals. Goals in work, social and life circumstances,” explained Cassie.
For others, technology was listed as an important asset, like Eleanor who encouraged others to “use fear as a motivator!”
While Jack summed it up perfectly with “sometimes you’ve got to take a risk!”
Although this was our last Youth Lab, it is also just the beginning of something much bigger for CPActive including our pilot program which is being launched in 2023.
Our next event is on October 14 for the World Cerebral Palsy Day Awards. Absolutely everybody is welcome to come, keep an eye out in your inbox for the invitation.
Our second Youth Lab on 24th August was all about empowering ourselves and others to know what our rights are and how we can exercise them effectively.
NextGen ambassador Sophie Geeves joined Teigan Butchers on the panel to speak about some of her own experiences in advocating for herself.
“This is about knowing what you’re worth and don’t be afraid to fight for it, allowing yourself to think outside of the boxes that are sometimes enforced on us”, Sophie said.
In breakout groups, young people were able to share their experiences and together, create their own top three tips on exercising your rights.
The Exercising Your Rights at School group shared hot tips including being assertive about what you need and when you need it, and being your own voice by not allowing others to speak for you.
The Employment/at Work group shared hot tips like ‘it’s not what you know but who you know’ in networking and identifying any discrimination early.
“I am currently advocating for a ramp to be built in my workplace so I can more easily access it!”, Eleanor said.
And the Funding Systems group advised that people should know what they want before going into a meeting as well as doing research like reading the legislation.
“We are all free agents, and we are capable of making our own change”, Declan explained.
Our third and final Youth Lab is coming up on 14th September where we will go deeper into the topic of networking and how to get the keys to success – keep an eye out for an invite in your inbox!
Representatives from Cerebral Palsy Alliance were honoured to attend the first NDIS Jobs and Skills Forum, organised by the Federal Government, in Canberra last week.
NDIS participants, their families, providers, disability organisations and the wider disability sector came together to talk about employment and disability, including representatives from CPA’s advocacy community, CPActive!
Two incredible young CPActive Champions, Meret Hassanen and Declan Lee, joined Minister for the NDIS Bill Shorten MP, Chair of the NDIS Joint Standing Committee, Libby Coker MP and Every Australian Counts organiser Elly Desmarchelier at the summit.
Meret and Declan held critical roles in driving discussion in face-to-face breakout groups and were front and centre stage. In fact, they even met the Prime Minister at a special summit dinner on Wednesday night, discussing the current systems and advising the Government on the best ways to support people with disability into work.
“Coming together with participants, providers and people from the NDIS and government, provided a great forum to discuss current challenges in the sector and new ways forward. It was great to be able to contribute experience ideas through being part of the panel discussion and co-facilitating a breakout session. I look forward to more of its kind,” said Meret.
“I’m proud to say that I’m beginning to feel more comfortable in my own skin as an advocate with multiple disabilities. I look forward to seeing what Bill Shorten and the Labor Government take from this forum (with cautious optimism!) to improve the employment prospects and the NDIS. Never have I been so proud and so humbled to be a member of the disability community,” Declan said.
The forum was a promising step forward in developing a co-designed, inclusive approach to increasing employment opportunities for people with disability and ensuring the NDIS is truly meeting the needs of our disability community.
We’re about to kick off a series of ‘Youth Lab’ virtual events where young people with cerebral palsy and similar disabilities will have the chance to co-design a set of recommendations that makes school, university, and the transition into the workforce more inclusive.
At this first Youth Lab on Wednesday July 27, we’ll be asking for your help to design what an inclusive education looks like. What do we need to change in the classroom? And what about outside of class?
The Youth Lab events will also be an opportunity for young people with cerebral palsy to share their experience, connect with each other, and be part of co-designing a pilot advocacy and leadership program for 2023.
If you’re a young person (under 30) living with cerebral palsy or a similar disability – please fill out the registration form and we’ll be in touch with the event Zoom link.
On 21st June, we held a Town Hall event with Australian of the Year Dylan Alcott and hosted by Elly Desmarchelier.
Our panel of CPActivists spoke about their lived experiences of social inclusion at school, how they have had to advocate for themselves and the power of networking to get into the workforce. Watch the highlights video now:
We’d love to see you at our next event.
The future of the NDIS is a hot topic, but what does this mean for young people with disability and have we heard enough of these voices throughout this Federal election campaign?
So how do we turn this attention from a ‘moment’ into longer-lasting momentum for the change we need to see to create a better future for young people living with disabilities?
Are you a person with a disability aged 16-24 and have ideas you want to share?
Register now for CPActive’s Youth Future Forum from 7pm on Monday 9 May.
The Forum is your chance to join other like-minded young people for a discussion about what the future could look like.
It could be something local like making a local sporting oval more accessible. Or discuss your experience in areas like education and employment. Or the lack of media representation of young people with a physical disability.
Or it could be something else entirely … it’s up to you and others in this small group chat.
This is your opportunity to be part of something new and co-design and grow a movement from the very beginning.
Register now for this free online event from 7pm on Monday.
Captions and Auslan interpretation will be provided.
The future is unwritten – we’d love you to be part of this.
Yours in action,
PS. If you can’t make it on Monday night but would like to be part of this new movement, email Teigan at firstname.lastname@example.org
On 30 November CPActive hosted our final event of 2021. After a very strange year, it was fitting to look back on everything we’d achieved together.
To relive some of our best moments and biggest achievements, check out the highlight video below!
We also took a look forward to all the exciting opportunities for change in 2022! If you couldn’t make it, here’s a wrap on a few things we discussed.
Teamwork Works is a new national campaign from National Disability Services, uniting people living with disability with service providers to oppose funding cuts to the NDIS.
Emma Dawson, Director of think tank Per Capita, joined the CPActive event to present their new report for the campaign False Economy: The economic benefits of the National Disability Insurance Scheme and the consequences of government cost-cutting.
“It’s fundamentally about shifting our understanding of investment in this kind of social service to a frame of investment. Of seeing it as an essential social infrastructure, rather than, as is too often the case in the rhetoric coming from our political leaders, a burden or a cost for the community,” Ms Dawson explained.
“Public health measures typically have… a return on investment between about 0.8% and 4%. And we calculated quite a conservative return on investment for the NDIS… of $2.25 returned into the broader economy for every dollar spent, or I prefer the term invested, in that scheme.”
“If we proceed down that very dangerous path of seeing this as a cost to be reined in, rather than as an investment that lifts us all up, then for every dollar cut from the NDIS we see a loss of over 10,000 jobs in our economy, and a drop in economic activity of over $2 billion a year.”
“That’s just for every dollar cut from the scheme.”
It’s been a challenging year for all Australians, but especially for people living with disability and their loved ones. Three of our campaign Champions Jerusha Mather, Johanna Garvin and Lia Sintras shared some of their own struggles and triumphs in 2021.
“I’m really passionate about helping people and sharing my story in order to help as many people as I can. So I think the whole idea of CPActive, for me, is an amazing opportunity because we can help each other share stories and really work on these issues that are really complex.”
“A really big highlight for me was just the impact that we were able to make being online. Maybe not accessing everything in a normal way, but being online and adapting to being online, and just making a big impact as a group together, and really tackling these big issues. Because I feel like the more we speak up, the more we’ll be able to really see some change.”
“One negative thing to me would have been the fact that we weren’t able to access our support workers in the normal way, face to face, that we were able to before. But I think… we were able to adapt to being online. Being there for one another and just finding different ways of achieving similar things.”
“But just seeing the impact that we can all make being online has been really amazing, and I can’t wait to see what’s in store for 2022.”
“One highlight for me this year was doing a course at RMIT on digital marketing strategy. That kept me really motivated through lockdown, because I found that last year in our first lockdown I wasn’t feeling very motivated, so I was determined to find different ways to keep me motivated and get out in one piece.”
“A challenge for me this year was trying to secure funding through the NDIS for a manual wheelchair. My first application was rejected, but luckily I’ve had more success in the last couple of weeks in resubmitting, and I’m going to get a new manual wheelchair, hopefully before Christmas. Fingers crossed!”
“I think what’s motivating me for the new year’s just hopefully continuing this motivation that I’ve had over the past lockdown thanks to the course, and keep making new goals and achieving them.”
“I really suffered this year because I was uncertain about changing things in the environment in the world that were very challenging for me and others in the community.”
“I would love to see change, and it’s really important that we stand for justice and change the world for positivity.”
“I have learned so much about the world around me and I have done some very deep reflection on what I want to do, and how I want to do it. I think there are really exciting times we’re living in, and I think for next year I would like to see more change in society, driving inclusion and accessibility… to help people with disability achieve their goals.”
“I’m so excited for what’s to come, and I hope we can keep supporting the NDIS because it’s just a great solution for many people. It’s supported many lives, and a lot of people have seen a great improvement in their lives.”
Jean Cochin from the Every Australian Counts campaign dropped by at the event to share what’s on the horizon in 2022.
“People in our community… not only fought so hard for the NDIS to be established, but continue to feel a very strong sense of ownership over it. And we all want to see the NDIS working as well as it possibly can,” she said.
“So we’re still here to help facilitate communications between people on the ground who have busy lives and know what’s going on, and the people that make decisions in Canberra and at the NDIA.”
Jean invited everyone in the CPActive community to get involved in campaigning next year.
“Before I was in this sort of behind the scenes role, I always wondered how much actually an individual can make a difference and I know it sounds so cheesy, but it really, really does, so I would strongly encourage everyone to get involved in any way that’s easiest and most accessible,” she said.
“But also, do you own things too. Contact your local MPs, tell them what’s going on in your life. These things all really to help paint a picture for them of what the real world looks like, and you know, they’re elected to represent you!”
“Stay tuned we’ll have more for you to participate in, but you know don’t be afraid to do things on your own and feel confident.”
Australia’s Paralympic team put in an inspirational performance at the Tokyo 2021 Paralympics. They lifted the hearts of millions of Australians watching at home, struggling through a new wave of the COVID-19 pandemic.
At the CPActive Virtual Ticker Tape Parade, we asked young aspiring athletes with cerebral palsy to interview some of their Paralympic heroes returning from the Games: sprinter Evan O’Hanlon, swimmers Matt Levy and Lakeisha Patterson, retired Paralympic champion Katrina Webb-Denis, and two members of our Pararoo football team, Christopher Pyne and Ben Atkins.
These Paralympians shared their wisdom on training, resilience, representation and inclusion for people living with disability, the importance of activism, and how to set and smash your goals.
You can read a few of their key lessons here.
For those who missed out, we’ve put together a video with some of the highlights from the event! Check it out below.
At CPActive’s Window of Opportunity launch event, four parents of children with cerebral palsy bravely told the story of their child’s diagnosis and treatment.
Some were able to receive an early diagnosis, giving the family the answers they needed, and their child the chance to receive the early treatment that can drastically improve their health and mobility outcomes as they grow up.
Sadly, other parents weren’t so fortunate. Their families endured long months of fear, stress, and desperation as they sensed something was different with their baby, but were forced to seek answers on their own as they tried to help their child.
You can read about their stories in detail in our wrap-up article, Stories from the Launch.
Watch the highlights from the parent panel at the Window of Opportunity launch below.
The stories of Eden, Kylie, Marelle and Anne prove how early detection can change lives. Families can’t just ‘wait and see’ – they need answers so they can give their child the support they need to thrive.
That’s why Australia needs BaMS for Bubs: to open the window of opportunity for every baby, and every family. With your support, we can make it a reality.
If you haven’t already, sign the petition to the Federal Government here!
If you have experience with receiving a CP diagnosis and treatment, either your own or a family members, you can share your story with CPActive here.