At CPSN, we’ve taken a step back to truly tap into our Community and listen. As part of our recent brand refresh, we partnered with strategic marketing team Harvey and engaged deeply with our members, Support Workers, and team—through workshops, community events, and ongoing conversations. This work wasn’t just about changing how we look—it was about understanding how we can better show up for the CP Community and deliver support that feels personal, relevant, and real.
Over the last three decades, we’ve seen enormous change. From our beginnings as a parent support group to the introduction of the NDIS and the complexities that have come with it. Through it all, our purpose remains the same: to share knowledge, create connections, and provide support in partnership with our members—working toward a world of equal opportunity for people with CP.
To ensure we’re meeting the real needs of our community, we set out to better understand the biggest barriers people with CP and their families face—and what needs to change. Their experiences highlight a common theme: a system that is often fragmented, overwhelming, and isolating. From struggling with NDIS processes to finding quality support workers, the voices of the CP community reveal a sector in need of greater connection, clarity, and compassion.
These conversations are helping us shape our own services and strengthen collaborations with other great organizations—like CP Australia and My CP Guide, to amplify voices, advocate for change, and drive better outcomes.
It’s important to note that this is not a formal research study and is not statistically representative of all people with CP. Rather, these insights are based on our conversations with members, discussions at our Community Family Fun Day in December 2024, and the lived experience of our team as well as those who work tirelessly to improve accessibility and support for people with CP. This is our interpretation of what we’ve heard, shaped by our role within the community.
Here’s what we heard.
Challenges and Needs
The Weight of Isolation
For many parents of children with CP, loneliness is one of the hardest parts of the journey. Life is busy and overwhelming, filled with medical appointments, therapy sessions, and advocacy efforts. What they often crave most is connection—with other families who understand their reality.
“I feel isolated as a parent of a child with CP. I just want to connect with other families who are going through the same thing and get support on how to navigate parenting a child with CP.”
Beyond parents, people with CP themselves often feel disconnected from the wider community. Hospitals and Community programs (especially for those with complex health needs) frequently fail to meet their needs, leaving many without the support networks they need.
NDIS: A System That Feels Like a Maze
The National Disability Insurance Scheme (NDIS) was designed to provide choice and control, but for many, it has become a source of frustration. Constant updates, complicated jargon, and unpredictable wait times for application decisions and appeals make it difficult to navigate.
Confusion over plan reviews vs. rollovers leaves people uncertain about their future support. Many people who could benefit from NDIS don’t have a plan—especially through the ageing process, where support is often overlooked.
For those who rely on the system, the lack of transparency and accessibility is exhausting. A clearer, more consistent approach is desperately needed.
The Challenge of Finding Quality Support Workers
A major concern we heard was the difficulty in finding reliable, committed Support Workers. While there may be no shortage of workers, the real issue is quality—finding those who genuinely care and are in the field for the right reasons.
“The ads they run for NDIS support work aren’t realistic—fake images of dancing and making pink cupcakes. The reality is, people with disabilities struggle with things others take for granted. Don’t glamorise it.” - A mother with and adult child with CP and complex needs
Many families struggle with:
- Continuity of care—having to constantly adjust to new support workers.
- Availability—long wait times or difficulty securing workers when needed.
- Funding limitations—not enough NDIS funding to access the right support.
Parents, in particular, feel that many workers don’t understand what meaningful support looks like.
“I don’t want a support worker who’s just going to put my son in the corner while tasks are completed- he is worthy of being engaged with his interests and building a relationship with”
The CP community wants support workers who prioritise connection over tasks, who empower rather than simply assist.
Transitioning to Adulthood: A System That Feels Fragmented
Young people with CP face a daunting reality when transitioning from childhood to adulthood. The once-structured supports of their youth become fragmented, leaving them feeling abandoned and forced into self-advocacy.
- They suddenly become responsible for organising their own care.
- Many don’t know where to go next, as their previous pathways disappear.
- Support that once felt consolidated now feels scattered.
Without clear guidance and support, this transition can feel overwhelming.
The Need for Holistic Healthcare
Finding healthcare professionals who truly understand CP remains a major challenge. From GPs and dentists to occupational therapists, too many professionals lack knowledge of CP-specific needs.
Beyond medical care, there is frustration with being viewed only through a medical lens—as if Disability defines a person’s identity.
“I don’t want to be just looked after or objectified from a medical perspective. I am a unique person with real interests, talents, and goals—just like anyone else.”
This highlights the need for a more holistic approach to disability support, one that sees the person, not just their diagnosis.
What Needs to Change?
The voices of the CP Community are clear—there are urgent gaps in the Disability sector that must be addressed.
- More peer connection opportunities for parents and individuals with CP.
- Clearer, simpler NDIS communication—less jargon, more transparency.
- Access to quality, committed support workers who prioritise connection.
- Structured support for life transitions, particularly into adulthood.
- A healthcare system that understands CP beyond just its medical aspects.
- Greater public awareness—no assumptions, no judgment, just understanding that CP looks different for everyone.
What CPSN are Doing to Help Address These Gaps
At CPSN, we are taking action to address these issues by providing real, practical solutions that empower individuals with CP and their families.
Building Community Connections
We’ve seen incredible success with our recent in-person events, including the Family Fun Day, a zoo outing, and a Youth event featuring metro travel training and a movie outing in the city. Feedback has been overwhelmingly positive. People have shared how wonderful it is to attend a truly accessible event where they feel 100% comfortable (without stares or judgment) and connected to the Community. We are committed to providing more of these opportunities.
Simplifying NDIS Navigation
We will be releasing easy-to-digest articles and resources breaking down the complexities of the NDIS, including:
- A-Z guides on jargon and key players
- Practical examples of how funding can be used
- Success stories from our Support Co-ordinators and nursing NDIS assessments
- Timely updates on NDIS announcements, explained in plain language
Quality Support is our heart and soul
We are not a mass recruitment agency—we take time to find the perfect match, provide specialist CP training, and offer flexibility (clients can bring their own support workers or we can recruit). Our Service team is always available to ensure every need is met, leading to long-term Support worker relationships.
Guidance Through Life Transitions
Our team includes people with Lived Experience and professionals who have worked closely in transition support. We will continue to share stories, lessons, and tips on key life transitions, including:
- Starting school
- Parenting with CP
- (Coming soon) Youth-to-Adult transitions
Strengthening Allied Health Understanding
While we don’t directly recommend providers, we are working to grow partnerships and provide training and education to Allied Health professionals to better understand CP.
Supporting Greater Public Awareness
We actively support campaigns and initiatives that elevate CP awareness, including World CP Day.
This is just the beginning. We remain committed to listening, learning, and evolving to better support the CP Community and create a more inclusive future.
The Disability sector must move beyond bureaucracy and rhetoric to focus on real people, real challenges, and real solutions. Because no one should have to navigate this journey alone.
Where to from here?
This blog reflects more than just feedback. It reflects the direction CPSN is moving in. Our refreshed brand, new website, and service design are built around what you told us matters: real support, not just services. Connection, not just communication. Purpose, not just policy.
We’re proud to be evolving, but we’re not changing who we are at the core. We’re simply expressing it more clearly and confidently: a specialist, client-led, Not-for-Profit provider working alongside the CP Community.
Thank you to everyone who shared their stories, challenges, and hopes with us. You’ve shaped this work, and you’ll continue to guide what comes next.
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