Cerebral palsy is the most common physical disability in childhood, and behind every diagnosis is a story.

Right now in Australia, there’s no standard program for screening babies for CP. That’s why the Window of Opportunity campaign exists: to advocate for a national Baby Movement Screening program for every child born, or BaMS for Bubs.

At the launch event the CPActive community heard from four parents about their child’s journey to diagnosis and treatment. These are their stories.

Kylie

Kylie’s daughter Anika had a stroke shortly after she was born. At the time, it was devastating for her family, but Kylie says it was also lucky in a way, because it meant her health and development was closely scrutinised, and she received her cerebral palsy screening at only a few days old.

By 6 weeks, Anika was receiving intensive occupational and physical therapy.

“We know through having done our own research how incredibly important neuroplasticity is in babies and children, so I really do think that that early start for her has made a world of difference,” Kylie says.

“We went from having a little girl who had no idea she had a right-hand side of her body – we would have to pick up her arm and shake it – to now a little girl who has worked very hard over the last four and a half years, that she is able to do just about everything that a little girl should be doing at that age.

“That early intervention, as far as I’m concerned, has set her up for a life that she should have.

“I can’t believe there are so many kids who slip through the gaps because they don’t get that opportunity.”

Eden

Eden knew early on that her son Kingston wasn’t like other children. For months she was told that all children do things in their own time, that there was nothing to worry about.

But when Kingston’s first birthday arrived he was not hitting the same milestones other babies his age were, like sitting up independently, and Eden’s anxiety reached a fever pitch.

Finally, as Kingston was receiving his one-year vaccinations, the paediatrician remarked casually: “I think he’s got CP.”

“It hit me like a ton of bricks,” says Eden.

“I felt anger and disbelief. I just didn’t understand it. It wasn’t the world that I had ever thought that he would be in. I actually had no knowledge of CP at that time and everything that popped up [in my research] was very, very scary.”

In the months that followed, Kingston finally received his CP screening and assessment.

“Absolutely every baby in Australia born needs to have early screening… It’s so important for our future because that would have saved me. It would have given me peace of mind, at least knowing what path I was taking from 6 months onwards, not waiting, not every day pushing him… hoping that he would walk at 10 or 11 months and it just never happening.”

Eden has this message for the Federal Government:

“It is our duty of care to help create a better future for our children. We need to use science and health education to prevent any misleading diagnosis.”

Marelle

Marelle’s daughter, Katie, is 44 now, but when she was born early screening wasn’t heard of.

Like many parents, Marelle knew Katie wasn’t typically developing, but struggled to have her concerns taken seriously by medical professionals.

“We were told all along the way that she was a slow starter, that we just had to wait and see,” Marelle says now.

“I spent 9 months searching for an answer to what I believed to be a problem with my baby. I had a gut feeling from day one that there was something not quite right.”

After taking Katie to see two more paediatricians, several GPs and a chiropractor, they were finally referred to a cerebral palsy specialist, where Katie was diagnosed almost immediately.

Katie is now living happily in specialist accommodation and close to her family. But forty years later Marelle still feels the pain of her family’s struggle to get Katie diagnosed.

“Perhaps if there was such a thing as an early screening program life could have been different for Katie,” she says.

“That window of opportunity that we talk about was lost for her. There was nothing in that 9 months for her. Had somebody taken up her cause and sorted out on day one, when a mother says there’s something wrong with my baby, there could have been a different outcome.”

Anne

Grace hardly had a heartbeat at 35 weeks, meaning that even after she was born her mother Anne was always on the lookout for health complications.

“I really knew from the night Grace was born that it would be a different journey… I was always looking for things, milestones that Grace wasn’t hitting,” Anne says.

After “a diagnostic odyssey” they finally arrived at Cerebral Palsy Alliance, when Grace was 18 months old.

“We tried to make up for lost ground with really intensive therapy,” says Anne. “It wasn’t as early as what it should be by a long shot, but I was searching for a measured approach for helping Grace develop.

“My wish is that families don’t have to go on those sorts of journeys because… we really did miss those early years. Grace has done extraordinarily well… but I really feel that we lost those critical early days and weeks and months.

“When we were on our journey there was this concept of protecting the parents, and I really don’t understand that concept. I think that the earlier parents know and can be supported in the early stages of this journey… is the best start you could hope for.

“My message is the earlier [CP is diagnosed] the better… I wonder where we might have been if we could have put our energies into supporting Grace and really understanding Grace’s needs much earlier than what we were able to.”

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We are so grateful to Anne, Eden, Marelle and Kylie for courageously sharing their stories and driving home why the Window of Opportunity campaign is so important for us.

If you have a story of your own, please share it with us at our Share Your Story page.

Every baby born with cerebral palsy has a window of opportunity that makes a lifetime of difference. But in Australia, we’re missing it.

Every baby born is tested for hundreds of health conditions, but not for cerebral palsy. It’s the most common physical disability in childhood, yet across Australia the approach to diagnosis is just ‘wait and see’.

Treating cerebral palsy in those first few months of life has a massive impact on that child’s wellbeing for the rest of their life. Every baby deserves that chance, and every parent deserves to know how to help their child thrive.

Register now for the launch of our new  Window of Opportunity campaign at 7pm on Thursday 19th August. We’re calling on the Federal government to provide universal cerebral palsy screening for every baby born in Australia.

We’ll share stories and discuss how we can work together to create lasting change

Hope to see you there!

We’ll keep you updated about the campaign. Click here to read our privacy policy.

Our CPActive event ‘Activism 101’ was a smaller skill share session where three prominent disability activists dropped in to share their wisdom with the CPActive community.

Grassroots campaigner Jerusha Mather, Jean Cotchin from the Every Australian Counts campaign, and Elly Desmarchelier from Women With Disabilities Australia joined us to discuss how they found their passion for activism, their experiences dealing with politicians and decision-makers, why the world needs to hear more voices with lived experience of disability.

They also shared some of their top tips on activism for everyone new to campaigning. Here are some of their words of advice:

1. Choose your issue: “If I spent all of my activist energy on everything I cared about, I would be spending 2 seconds on every issue and completely burn myself out. So, you have to be very specific.” – Jean
2. Find out who’s active: “You just really need to spend some time talking to people who know this issue. What have they found, what have they heard – and often there’s not one answer… there’s multiple decision-makers along the way, and it’s who influences those decision-makers that you might need to get to… we’re working on the Senate crossbench because the PM needs the crossbench to pass anything.” – Elly
3. Put your hand up: “Don’t be afraid to jump in and put your hand up. You’re entitled to participate in this democracy. Even though it’s intimidating when it’s new, you’re totally entitled to it.” – Jean
4. Know who you’re talking to: “I think it’s really important to find your target audience and write to them and ask them to support your cause… have discussions about your cause and how to go about changing the systems.” – Jerusha
5. Use your tools (MP meetings, online petitions, news): “Get as many media outlets to write about your cause [as you can], have meetings with Members of Parliament to talk about your issue.” – Jerusha

Above all, all three believed in the power of people with disability telling their stories. These stories, your stories, will be the foundation of CPActive’s campaign for change. Whether it’s in education, healthcare, or the workplace, we believe Australia should be accessible and inclusive for everyone.

That’s why we want to shine a light on the experiences of people with disability and bring your stories to the world. Please, share your story with us on the CPActive website.

Yesterday the Federal government released its budget, which included another boost to the NDIS as well as new funds for community and support services.

Here’s a brief breakdown of what’s new:

Major Highlights

• $13.2 billion to the NDIS
• $1.9 billion for vaccination rollout which includes extra cash for workers involved in the roll out and a national ad campaign.
• JobTrainer program extended
• Up to $1,080 back in tax for low to middle income earners (people earning between $37,000 and $90,000)
• $354 million for women’s health
• Additional funding for mental health and suicide prevention

What’s in the budget for the NDIS?

The budget invested an extra $13.2 billion in the NDIS, bringing its total extra Federal Government funding to $17.1 billion. The Government is expected to spend $23.3 billion in NDIS supports this financial year, and is projected to reach $32 billion in 2024-25. There’s also an extra $12.3 million to boost the number of disability support workers under the NDIS.

What’s in it for women?

There’s some good news for women too, with nearly a billion dollars in the budget to support victims of family and domestic violence. Additionally, $10.7 million for teaching young people about respectful relationships in schools. A women’s safety package of $1.1 billion, including financial support and emergency accommodation, will be rolled out, with a further $376.2 million for legal support. The government will also provide $20.5 million toward implementing the recommendations of the Human Rights Commission’s Respect@Work report. Nearly $27 million set aside for people living with eating disorders. The Pelvic Pain Foundation will get $5 million to roll out a program on endometriosis for school students, and there’s extra money for breast and ovarian cancer support, too.

For education?

$2 billion being delivered toward early education, allowing universal free access to preschools around the country. Children will receive at least 15 hours a week, beginning from mid-2022. Australian schools will also receive an increase in funding from $13.8 billion in 2014 to $23.4 billion in 2021.

What’s in the budget for health?

$1.5 billion will go to telehealth services and COVID-19 testing as well as outbreak prevention in remote communities. $1.5 billion will go to telehealth services and COVID-19 testing as well as outbreak prevention in remote communities.

For mental health?

The budget includes $2.3 billion for mental health and suicide prevention measures. Headspace will get an extra $278 million over four years, and there’s cash for mental health services for FIFO workers, and to support families who’ve lost loved ones to suicide.The government is setting aside $487 million for 40 new services for people aged 25 and over, called Head to Health.

What’s missing?

• The Arts: only a small spend ($12M) for the arts, targeted at big productions and international films. No extra budget for ABC or SBS.
• Universities: a small spend for universities to create online learning resources for foreign students.

For the very eager among us, here are links to a few more in-depth explainers:

• ABC Budget Explainer
• PWC Budget Insights
• Channel 9 Budget winners and losers
• What’s in it for young people

Until next time,

Bronya Metherall

For the CPActive campaign