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.

Check out our upcoming events here.

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,

CPActive team

PS. If you can’t make it on Monday night but would like to be part of this new movement, email Teigan at tbutchers@cerebralpalsy.org.au

The NDIS has been a gamechanger for people with cerebral palsy, empowering our community with freedom and choice. But the NDIS is at a crossroads – help us to ensure that the NDIS isn’t forgotten about this election day.

Join Cerebral Palsy Alliance for a fun, empowering day of community action on 28 April on the NSW Central Coast.

You can meet your local Federal election candidates, ask them how they’ll support people with disability and their families, and help make our voices heard.

You can also gather your friends and family, meet other people with lived experience of CP and enjoy a good chat over a cup of tea, and some musical entertainment, grab a lego fun pack and hear from a panel of speakers about their experiences.

Event Details:
DEFEND OUR NDIS: NATIONAL DAY OF ACTION COMMUNITY EVENT
10.00-11.30am. Thursday 28 April
Parkview Room, Central Coast Leagues Club, Gosford
Free event, RSVP here for catering: https://www.eventbrite.com/e/defend-our-ndis-national-day-of-action-community-tickets-310157668937

Help ensure the NDIS isn’t forgotten about on election day.
The CPActive team hopes to see you there!

Don’t live in Gosford or surrounds? There’ll be local events happening all over Australia on 28 April.
Look up an event near you here: https://everyaustraliancounts.com.au/election-events/

When Tamsin Colley arrived for the 2016 Paralympic Games she was the youngest member of the Australian team, turning fourteen in Rio.

It’s an achievement most of us only dream of. As an athlete living with cerebral palsy, it also made Tamsin an advocate, a role she was eager to take up.

“I was the youngest ever Australian to compete in athletics at the Paralympics,” says Tamsin. “I was lucky enough to get support to participate in sport from a young age and want to ensure other people receive the same opportunities.”

With the Paralympics under her belt at such a young age, Tamsin’s focus turned to her high school studies, ready to bring her determination and drive to excel at this next challenge.

But she was in for a rude shock. The support and encouragement that had helped her reach the Paralympics was excruciatingly hard to find in the education sector. Whilst some individual teachers tried their best to accommodate her, it became clear the system was not geared towards supporting people with physical disabilities.

“People making the decisions about disability provisions knew little about what support we need,” she says now.

“In sport, it’s obvious when someone has a disability they are working with. It can be less obvious in school. My cerebral palsy is mild, but I still write slower, and they just didn’t understand what I needed.”

In an article for the Canberra Times, Tamsin recounts her Higher School Certificate exams. It was an uphill battle to get the support and extra exam time she was entitled to. The examiners were not trained in the ExamWriter software she used, causing Tamsin to lose some of her answers and valuable time to complete her exams. For every mistake a misadventure claim was filed, and each was rejected by someone who had never met her.

Tamsin beat the odds and is now studying Exercise Physiology at the University of New South Wales. But she never forgot the uphill battle to academic success – and she’s demanding our education system does better for students like her.

“Sport seems light years ahead of academia because it provides opportunities to excel. The education system doesn’t. It struggles to give us the most basic support,” Tamsin says.

“If I hadn’t had support from my parents, it would have been a lot harder and probably I wouldn’t have gotten as I did. I really recognise my privilege in having tertiary educated parents to advocate for me and navigate the bureaucracy. Not everyone has that.”

Tamsin’s vision for a more equal education system begins with agency, choice, and a voice.

“Recently I started university and unlike at school, they actually met with me and discussed my needs, which was great. In the HSC they don’t meet the person. They can’t differentiate between who needs support the most, even in the classroom too.

“Educating people in schools and just talking to us would make a huge difference.”

Marley Lyras-Hull is a master juggler, Cerebral Palsy Alliance employee, and is currently studying her fourth degree – and she shares the secrets behind her drive on the Cerebral Conversations Podcast.

She’s raising three daughters, one of whom lives with a disability, and Marley herself lives with cerebral palsy. When there really are only 24 hours in a day, how does she get it all done?

Marley talks about how she juggles ALL the things, what inspires her, and her tips for other parents living with a disability or parenting a child with disability.

Listen to the podcast episode here.

CPActive Champion Jerusha Mather is on a quest to find love. Living with cerebral palsy, Jerusha knows that for people with disabilities the journey can take extra twists and turns.

On major dating apps, people with disabilities often experience discrimination, where their prospects of being seen as a potential partner are often judged according to their disabilities.

“I have had many challenging moments with people misunderstanding and judging me at face value because I move and speak differently,” Jerusha says.

Knowing her experiences are not isolated, she wants the big dating apps to acknowledge exactly that.

Jerusha has started a petition on Change.org calling on Tinder, Bumble, e-Harmony to take meaningful steps to increase visibility of people with disabilities using their apps and educate their users to be more open and inclusive when searching for the one.

This includes ensuring that their apps are safe spaces for people with disability, increasing visibility by including people with disability in their advertising, and making mentoring and specialist coaching accessible for people with disability who may need extra support along the way.

The petition already has over 2,000 signatures – click here to add yours!

“Just like the next person, I too am looking for a romantic partner and want to be in love,” says Jerusha.

“People with disabilities have the potential to become great partners. We bring love, care and passion to our relationships just like anyone else. We want to be lovers, parents and experience fulfilling relationships.

“If you’re someone who uses dating apps or websites, there’s a lot you can do to be inclusive of people with disabilities looking for a partner.

“Do not infantilize us and look upon us with sadness, we do not need your sympathy.

“Treat us as you would treat any other person, with respect and dignity.

“Turn up to the date, with the intent to get to know us.

“Do not use negative words such as suffering, problem, vulnerability, and weakness to describe disability, a person’s disability should not be the central focus or be made a big deal of.”

By targeting the gap where many misplaced and uninformed assumptions about dating someone with a disability are formed, people with disabilities can have better and more positive dating journeys and experience the love and companionship that everyone deserves.

You can sign and share Jerusha’s petition here: Bumble, Tinder, e-Harmony: Make your platforms more inclusive of people with disabilities

By Ananya Choudhary

My name is Ananya Choudhary, I am sixteen years old with Cerebral Palsy. I am in my last year of secondary education and currently studying at Macarthur Girls High School. I am interested in technology and I like creating digital content such as social media posts, posters, flyers and many more.  As I am growing and slowly entering the real world outside of school, I want to learn more about the work environment. I think that through work experience I will be able to learn about the work environment and how to use theoretical knowledge in the real world.

I got an offer to work in CPA’s Global Influence and Social Impact Department from 14^th January 2022 to 28^th January 2022. This department works in championing an inclusive society for those with cerebral palsy both domestically and globally and building the community through digital media like websites, emails, social media, blogs and many more.

When I started my work experience in CPA, in the first week I got to edit photos, create email banners and a guide on creating content and design. I found the photo editing and creating the email banners were simple but enjoyable tasks. These two tasks helped me to use my creative mind by experimenting with design elements. I initially found a guide on creating content and design task challenging. However, the knowledge of literacy and creativity that I gained from school assignments allowed me to create and present this guide for professional purposes. Through all these tasks I got the ability to enhance my creativity, organisational and time management skills. It also gave me the opportunity to present my work in a professional layout.

Since COVID-19 was at its highest peak in Sydney, I was not able to travel to the CPA office. This is a downfall because I didn’t get the opportunity to work in a team with the CPA staff and learn about their physical work environment. However, I was able to learn about the online work environment of CPA. I also got to learn how to communicate effectively through emails. This helped to enhance my online communicational skills as well.

Overall, throughout the first week of online work placement in CPA I got to gain many skills such as organisation, time management, execution of different content, creativity and effective communication through online platforms such as email. I also had first-hand experience in applying the learnings from school education to the real world. I hope to learn and gain more experiences in my second week and in the future as well.

My Tips on Work Experience

– Brainstorm what type of career you want to pursue in the future and look for workplaces that can help you to get an insight related to that career stream.

– Try contacting many workplaces to get the opportunity. If you don’t get any opportunity because of COVID-19 or any other reason, don’t lose hope and keep trying.

– Create a relevant resume as evidence for skills you have acquired, just in case workplaces need it.

– Be open to different opportunities as there is a possibility that it might not be an exact fit.

If you or someone you know is interested in work experience at Cerebral Palsy Alliance, you can visit the Student placement FAQ’s on the Cerebral Palsy Alliance Website and register your interest on the students page or you can email students@cerebralpalsy.org.au

The employment rates for people with disability are unacceptably low in Australia. Less than 50% of people aged 15-64 years with disability are employed, compared to 80% of their peers without disability. This gap has not changed for decades.

Various projects, strategies and schemes have been implemented by federal and state governments. But despite this, Australia’s participation rate for people living with disability is on par with developing countries – and it needs to change.

Any strategy for inclusive employment needs to be based on the lived experiences of people with disability. That’s why Cerebral Palsy Alliance is conducting consultations with people living with CP and similar conditions to understand your employment journey.

Would you like to have your say? Email project officer Dula Hettiarachchi at dula.hettiarachchi@cerebralpalsy.org.au to express your interest!

The consultation will include questions about:

• What employment means to you
• Your positive and negative experiences with finding a career
• What are your tips for organisations and companies
• Creating inclusive practices and environments
• Hopes for the future of employment

These consultations will shape CPA’s recommendations for how governments and employers can support people with disability to find and retain a fulfilling and successful career.

If you’d like to participate in this exciting project, please email project officer Dula Hettiarachchi at dula.hettiarachchi@cerebralpalsy.org.au. If you’re not comfortable speaking directly, that’s okay – feel free to send your thoughts in writing!

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: the new campaign from the disability sector

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.”

Reflections from CPActive Champions

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.

Lia Sintras

“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.”

Johanna Garvin

“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.”

Jerusha Mather

“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.”

Every Australian Counts

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.”

Neuroplasticity is the secret ingredient for better brain power – and better outcomes for children with disability.

Professor Iona Novak, CPA’s Chair of Allied Health, co-founder of the CPA Research Institute and renowned journalist, author and broadcaster Tracey Spicer go deep into our grey (and white) matter to explore the brain’s ability to create new neural pathways and what that means for a child’s critical early years of neurological development. How can we rewire our brains by learning new skills? Why are some pathways a bit overgrown and others rather well-trodden? Can teenagers and adults harness neuroplasticity, and how is it relevant for people without disability?

Professor Iona Novak, CPA’s Chair of Allied Health, co-founder of the CPA Research Institute and a Fulbright Scholar. Her research aims to discover, test and translate new treatments that have the potential to make a real impact for people living with cerebral palsy. Learn more about Iona’s work at cerebralpalsy.org.au/our-research/

Author, journalist and broadcaster, Tracey Spicer is a passionate advocate for the causes that matter most. For her decades of work for social welfare and charitable groups (including as an ambassador of the Royal Hospital for Women’s newborn care unit), Tracey was awarded the Order of Australia in 2018. Learn more at traceyspicer.com.au 

Click here to listen now.