Supporting People with Cerebral Palsy: A Guide for NDIS Support Workers
This guide brings together current research and the practical experience we have gained supporting people with cerebral palsy across South East Queensland. Our hope is that by sharing what we have learned, more individuals, families and support workers can benefit from support that is respectful, person-centred and evidence-informed.
Registered NDIS Provider · Gold Coast, Logan, Ipswich & Brisbane
Cerebral palsy is caused by a non-progressive injury to the developing brain, meaning the original brain lesion itself does not worsen over time. That does not mean a person's physical presentation stays fixed. Muscles, joints and bones continue to respond to that original injury throughout life, often producing genuine changes in pain, fatigue and mobility decades later. Cerebral palsy also spans an enormous spectrum, from people who walk, talk and live independently to people with significant physical and communication support needs. Effective support depends on recognising which end of that spectrum the person you support sits on, rather than applying a single mental picture of "cerebral palsy" to everyone.
At Hearts In Action, these principles guide the way we support people every day. This guide combines evidence from the research with practical insights from our work alongside people with cerebral palsy and their families. We hope it encourages thoughtful, individualised support that helps people manage their physical health, communicate on their own terms and live with genuine independence.
A note before you read on
Every person is unique, including every person with cerebral palsy. Presentation varies enormously, from subtle motor differences to significant physical and communication support needs, and no two people experience cerebral palsy the same way.
Use this guide as a way to build understanding while remaining open, curious and responsive to the person you are supporting. Their communication style, physical needs, preferences and goals should always guide the support they receive.
Trust and Clear Communication Drive the Relationship
A realist qualitative study involving people with disabilities, family members and support workers identified three mechanisms that consistently drove positive, sustainable relationships: clear communication, building trust, and developing a sense of flow (Bourke et al., 2025). Flow is the point where support becomes seamless rather than effortful for everyone involved. The same study found each mechanism manifested differently for each of the three groups. Activating each one was shaped by a distinct balance of resources and tensions specific to people with disabilities, their families, and their support workers. Because community disability support often takes place in someone's own home and involves intimate personal care, the quality of this relationship shapes almost every other outcome. Our personal care and daily living support is built around this. We keep the same familiar workers, so the trust behind these physical care tasks doesn't have to be rebuilt every visit. A support worker who rushes physical care tasks or talks over a person rather than with them undermines the flow that makes support genuinely comfortable.
It's worth remembering
Communicate clearly and check in before and during physical support tasks, rather than working on autopilot. Trust is built through small, repeated moments of being asked, informed and respected, not assumed because a routine has become familiar to you.
Recognise the Spectrum: Ambulatory and Verbal Cerebral Palsy Is Still Cerebral Palsy
Population surveillance data show that just over half of people with cerebral palsy walk independently without assistive devices (Kirby et al., 2011). Many also speak clearly and live largely independent lives. In our experience, these needs can be easy to overlook precisely because the disability is less visible. A 2025 clinical overview confirms that functional abilities, including gross motor function, hand function and communication, commonly decline through adulthood (Loewen et al., 2025). Ongoing attention therefore matters even for people who present as highly independent. A study of ambulant adults with cerebral palsy found that most reported a decline in walking ability since reaching adulthood. A similarly high proportion reported falling in the preceding year, well before the age most people expect mobility issues to begin (Morgan & McGinley, 2013). A qualitative study of ambulatory adults with cerebral palsy found walking held deep personal and identity significance. Fatigue, pain and the mental effort of walking were rarely visible to others. Many participants felt their difficulties were dismissed or misunderstood by people who assumed "walking fine" meant "doing fine" (Gjesdal et al., 2020). Protecting that hard-won independence as needs change over time is a big part of how we approach capacity building.
It's worth remembering
Do not assume that walking and speaking independently means a person needs little support, or conversely that their cerebral palsy is not "serious." Ask specifically about fatigue, pain, balance and any recent changes in walking ability. These are common, and easy to miss when someone otherwise presents as highly capable.
Understand That Cerebral Palsy Affects the Whole Body, Not Just Movement
Cerebral palsy is often thought of purely as a movement condition. Large studies of adults with cerebral palsy, however, consistently find high rates of chronic pain and fatigue that are frequently under-recognised in everyday support. A large study within the Swedish cerebral palsy follow-up program found that nearly seven in ten adults with cerebral palsy self-reported pain (Rodby-Bousquet et al., 2021). The highest rates were reported by adults with the mildest physical presentation. Severe pain was also strongly linked to interference with daily activity and sleep. A study of young adults with cerebral palsy found that those with milder motor function (GMFCS level I) generally reported less pain and fatigue than the general population (van Gorp et al., 2021). Those with moderate to severe motor impairment (GMFCS levels II to V) reported significantly more of both. Pain and fatigue were also far more closely interrelated in people with cerebral palsy than in the general population, with strong flow-on effects for mental health. Research using real-time fatigue tracking similarly found that fatigue in adults with cerebral palsy follows distinct daily patterns (Verschuren et al., 2023). Some people experience stable low fatigue, others a steady increase across the day, and others stable high fatigue throughout. A person's energy on a Tuesday morning can therefore tell you little about their energy by Tuesday afternoon.
It's worth remembering
Do not assume someone's physical or energy presentation earlier in the day will hold steady. Equally, do not assume that a person's level of physical impairment predicts their level of pain in a simple way. Ask specifically about pain and fatigue rather than waiting for someone to mention it. Both are common and easy to underestimate from the outside.
Communication Differences Are Not Cognitive Differences
Many people with cerebral palsy have communication differences, ranging from mild speech difficulty to reliance on augmentative and alternative communication (AAC) tools. These differences are frequently, and wrongly, equated with reduced intelligence. Eye-gaze control technology is a form of AAC that lets a person operate a device using only eye movement. Research into it found that access to the right technology opened previously inaccessible forms of communication and participation (Elliott et al., 2026). Outcomes, however, depended heavily on the consistency of support, the expertise of the people helping, and the person's opportunity to build confidence with the system over time. The same research found implementation was often a long, complex journey involving funding hurdles and technical troubleshooting. A person who seems slow to communicate through AAC may be managing a genuinely difficult system, not struggling to think of a response. A person's rate of speech or reliance on a communication device reflects a physical or technological barrier to expression, not the quality of the thoughts behind it.
It's worth remembering
Give people using AAC or slower speech the time they need to communicate, without finishing sentences for them or moving on before they have finished. Learn their specific communication system and preferences rather than expecting them to adapt entirely to typical conversational speed.
Support Self-Determination Actively, Not Passively
Communication ability and self-determination are closely linked, and simply providing an AAC device is not enough on its own. In our experience, adults with cerebral palsy who cannot speak show greater self-determination when the person and their support worker are trained together to use the AAC system. That collaborative training matters more than simply introducing the device to the person alone. This matters directly for support workers. Your own comfort and skill with a person's communication tools shapes how much genuine choice and control they can exercise. That holds regardless of how capable the device itself is. Our community access support is built around the same principle. Real participation in the community depends on genuine, active support, not just the availability of the right tool. Passive availability of a communication method is not the same as active, skilled use of it in daily interactions.
It's worth remembering
Take the time to properly learn a person's communication system, rather than relying on family or therapists to interpret for you. Practising alongside the person, and asking them to teach you, directly increases their ability to make real decisions in your presence.
Watch for Secondary Musculoskeletal Decline and Accelerated Aging
The muscles, joints and bones of a person with cerebral palsy continue to respond to their original brain injury across a lifetime. As a result, adults commonly experience musculoskeletal and neurologic conditions, such as osteoarthritis, osteoporosis and myelopathy, more often than their typically developing peers (Loewen et al., 2025). Cardiovascular and metabolic conditions, including type 2 diabetes, hypertension and ischemic heart disease, also tend to appear earlier and more often than in the general population. This is compounded by a well-documented gap in clinical follow-up after the transition from paediatric to adult care. Secondary health issues can therefore develop with less monitoring than during childhood. Movement itself is also significantly more energy-intensive for people with cerebral palsy than for the general population. That helps explain why fatigue and functional decline can emerge well before midlife. It also explains why some adults choose to use a wheelchair or mobility aid part-time. For them it is a way of conserving energy, not a sign they have lost the ability to walk. These changes affect functional status, independence and quality of life over time. They matter just as much for someone who currently walks and talks independently as for someone with higher support needs. That is what makes early detection genuinely important, rather than a minor convenience.
It's worth remembering
Report gradual changes in mobility, strength, pain, balance or stamina to family or clinical supports promptly. Do this even if the changes seem small, and even if the person seems highly independent. These changes come from the body's long-term response to the original injury, not from the brain injury itself getting worse. Many respond well to early physiotherapy, pain management or energy-conservation strategies if caught early.
Physical Assistance Should Never Come at the Cost of Autonomy
Cerebral palsy support frequently involves hands-on physical assistance with mobility, transfers or personal care. That closeness creates a genuine risk of support becoming something done to a person rather than with them. The same relationship research identifying trust and communication as key mechanisms also found "flow" worked when physical support felt collaborative rather than mechanical (Bourke et al., 2025). Participants with disability specifically valued being consulted about how physical tasks were performed, not just that they were completed safely. A support worker who moves a person's body without narrating what they are doing can make support feel disempowering. So can defaulting to the fastest method rather than the person's preferred method, even when the support is technically competent.
It's worth remembering
Narrate physical support as you go, and ask for the person's preferred method before defaulting to your own, even for routine tasks. Technical competence and a genuine sense of control are not the same thing, and people notice the difference.
Families Are Partners, Not Peripheral
Family members are frequently central to a person's communication, mobility and health management, particularly where communication support needs are significant. The same realist study found families navigate their own distinct balance of trust and communication tensions alongside the person and support worker (Bourke et al., 2025). That relationship is separate from, but connected to, the other two. Coordinating clearly with families, always with the participant's consent, extends consistency across the different people and settings involved in someone's care. It also helps prevent conflicting approaches to physical support or communication, which can otherwise confuse or frustrate the person at the centre of it.
It's worth remembering
Where appropriate and with consent, check in with families about physical support techniques and communication preferences rather than assuming. Share what you learn, so approaches stay consistent across everyone involved in the person's care.
References
- Bourke, J., Johns, J., & Martin, R. A. (2025). Unpacking how trust, communication and flow interact to sustain quality relationships between disabled people, family and support workers: A realist qualitative study. Disability and Rehabilitation, 47(8), 2054–2064. https://doi.org/10.1080/09638288.2024.2390049
- Elliott, S., Wallen, M., McInerney, M., Parry, A., & Karlsson, P. (2026). Perspectives of people with cerebral palsy and communication partners about eye-gaze control technology opportunities and service provision in Australia: A qualitative study. Augmentative and Alternative Communication. Advance online publication. https://doi.org/10.1080/07434618.2025.2604826
- Gjesdal, B. E., Jahnsen, R., Morgan, P., Opheim, A., & Mæland, S. (2020). Walking through life with cerebral palsy: Reflections on daily walking by adults with cerebral palsy. International Journal of Qualitative Studies on Health and Well-being, 15(1), 1746577. https://doi.org/10.1080/17482631.2020.1746577
- Kirby, R. S., Wingate, M. S., Van Naarden Braun, K., Doernberg, N. S., Arneson, C. L., Benedict, R. E., Mulvihill, B., Durkin, M. S., Fitzgerald, R. T., Maenner, M. J., Patz, J. A., & Yeargin-Allsopp, M. (2011). Prevalence and functioning of children with cerebral palsy in four areas of the United States in 2006: A report from the Autism and Developmental Disabilities Monitoring Network. Research in Developmental Disabilities, 32(2), 462–469. https://doi.org/10.1016/j.ridd.2010.12.042
- Loewen, H., Tapper, J., & Condliffe, E. (2025). Adults with cerebral palsy. CMAJ, 197(32), E1034. https://doi.org/10.1503/cmaj.241683
- Morgan, P. E., & McGinley, J. L. (2013). Performance of adults with cerebral palsy related to falls, balance and function: A preliminary report. Developmental Neurorehabilitation, 16(2), 113–120. https://doi.org/10.3109/17518423.2012.725107
- Rodby-Bousquet, E., Alriksson-Schmidt, A., & Jarl, J. (2021). Prevalence of pain and interference with daily activities and sleep in adults with cerebral palsy. Developmental Medicine & Child Neurology, 63(1), 60–67. https://doi.org/10.1111/dmcn.14678
- van Gorp, M., Dallmeijer, A. J., van Wely, L., de Groot, V., Terwee, C. B., Flens, G., Stam, H. J., van der Slot, W., & Roebroeck, M. E. (2021). Pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy. Disability and Rehabilitation, 43(15), 2164–2171. https://doi.org/10.1080/09638288.2019.1694998
- Verschuren, O., Benner, J. L., Balemans, A. C. J., Horemans, H., van den Berg-Emons, R. J. G., & van der Slot, W. M. A. (2023). Real-time daily fatigue, sleep, physical activity, and health-related fitness in adults with cerebral palsy. Developmental Medicine & Child Neurology, 65(4), 509–516. https://doi.org/10.1111/dmcn.15421