Cerebral Palsy Disability Snapshot
SGP KP Publishing
Exported on 2026-06-17 23:42:47
FOI 25/26-3216 DOCUMENT 5
The document was released under the Freedom of Information Act 1982 by the National Disability Insurance Agency.
Agency.
SGP KP Publishing – Cerebral Palsy Disability Snapshot
Table of Contents
- What is cerebral palsy?. …. 4
- Different types and measures for describing cerebral palsy …….. 5
- Common characteristics and impacts of cerebral palsy ……… 6
- Common misconceptions about cerebral palsy ………….. 7
- Language and terminology ………………………………… 8
- Enabling social and economic participation ……………… 9
- Families and carers ……………………………….. 10
- How can I tailor a meeting to suit a participant with cerebral palsy?…….. 11
- Peak body consulted……………………………….. 13
- Helpful links……………………………………….. 14
Cerebral Palsy Disability Snapshot
The Disability Snapshot provides general information about cerebral palsy to assist you in communicating effectively and supporting the participant to develop their goals in a planning meeting. Each person is an individual and will have their own needs, preferences and experiences that will impact on the planning process. This information has been prepared for NDIA staff and partners and is not intended for external distribution.
Agency.
This document was released under the Freedom of Information Act 1982 by the National Disability Insurance Agency.
SGP KP Publishing – Cerebral Palsy Disability Snapshot
1 What is cerebral palsy?
The Freedom of Information Act 1982 by the National Disability Insurance Agency.
Tocerebral palsy (CP) is a lifelong physical disability that begins in early childhood. It occurs in the developing brain in pregnancy or in early childhood. It effects movement, posture, muscle control and co-ordination of movement. Many people with CP may also have secondary disabilities.
CP may change and its impact may become more complicated over time but it is not a degenerative condition. CP is the most common physical disability in children. There are currently around 34,000 people living with CP in Australia and 1 in 500 Australian babies are diagnosed with the condition.
CP can affect gross and fine motor skills, as well as speech. This impacts on participation in everyday activities. Although CP is lifelong and non-progressive, factors such as puberty, ageing and weight gain may detrimentally impact a person’s function.
specialists such as paediatricians or neonatal specialists can diagnose CP. General practitioners (GPs) also frequently play a critical role in maintaining the daily functioning and wellbeing of someone with CP. The complexity of CP means interventions from a variety of specialists and allied health professionals are usually required to support participation in everyday activities.
What is cerebral palsy? – 4 Page 52 of 334
SGP KP Publishing – Cerebral Palsy Disability Snapshot
The different types of CP include spasticity, involuntary muscle movements (dyskinesis), writhing or repetitive movements (athetosis or dystonia), and involuntary coordination of movements (ataxia).
CP can affect people in different ways:
- quadriplegia where both upper and lower limbs are affected. Often the torso and head are also affected.
- diplegia where the lower limbs are affected. The upper limbs may be only slightly affected.
- hemiplegia where only one side of the body is affected.
the
The Gross Motor Function Classification System (GMFCS) is the most commonly used measurement tool for describing the severity of CP. This system has a 1-5 rating scale, with 1 being the least severe and 5 being the most severe. The GMFCS classifies the level of aperson’s function in terms of their ability to perform gross motor actions, including sitting, standing, walking, and running.
SGP KP Publishing – Cerebral Palsy Disability Snapshot
FOI 25/26-3216
3 Common Characteristics and Impacts of Cerebral Palsy
The National Disability Insurance Agency.
Although everyone with CP is different, there are some commonalities, including:
- Many people with CP have a second or third disability or associated impairments such as intellectual disability (50%), epilepsy (25%), hearing or vision impairment (10%), speech impairment (25%), behaviour disorder (25%), incontinence (25%), sleep disorder (20%) and saliva control problems (20%).
- Some people with CP have a mental health condition. Anxiety and depression are common. Reasons for this are not the underlying physical disorder but the associated psychological and social factors that may impact the individual.
- Many people with CP experience chronic pain (75%), particularly in adulthood.
- Most people experience a significant decline in physical functioning in adulthood. Exercise, stretching and therapy help people maintain their strength and function.
- People with CP can have muscle weakness.
These additional impairments can have a greater impact than the CP itself and will require higher levels of support to enable someone to engage in everyday life. For example, a person who does not have good hand function and a speech impairment, will likely need assistive technology to help them to communicate effectively.
Common characteristics and impacts of cerebral palsy – 6 Page 54 of 334
#Common misconceptions about cerebral palsy
- Most people with CP can walk with minimal support. In fact, some individuals mobilise without or little/no support so their disability may go unnoticed. *The misconception: ‘Everyone uses a wheelchair or aid.’
- Intellectual disabilities affect approximately half (50%) but mild cases exist in others too, *Misconception:‘All those affected are intellectually disabled’
- Genetic factors contribute up-to one-third(10%-30%), familial being rare at just over 1%,(siblings having it). *Misconception:‘CP isn’t genetic’.
- Progressive or life-limiting conditions aren’t common; profound cases might reduce lifespan slightly if associated risks apply; *Misconception:‘People have limited lifespans due to CP’ .
- Most adults manage regular sexual activity despite physical and social barriers present for some. *Misconception:’Those cannot be sexually active ’
- Reproductive systems match everyone else’s including pregnancy potential. *Misconception:’They don’t conceive children ’.
- non-verbal communication doesn’t imply intellectual impairment:
- Misperception:‘Non-verbal means they also lack understanding of me’.
- Some with uncoordinated walking appear unstable, not drunk
- Misperception:’A person appears intoxicated because their condition is visible on the surface. ’. -Everyone has full citizenship rights inclusive regardless of disability status.
Language and terminology
In all instances, use language which focuses on people’s strengths and abilities instead of their CP.
| Do Say | Don’t Say and here’s why |
|---|---|
| Person with cerebral palsy | Don’t say: Spastic. Medically, spastic means tight and stiff muscles; its ok to use in technical medical context; however, it is offensive and derogatory when used to define, insult, tease or belittle someone. |
| Person with cerebral palsy | Don’t say: Retarded. Discussing intellectual function uses ‘intellectual disability’. The term retarded is outdated, offensive and harmful. It is not socially acceptable irrespective of context. |
| Wheelchair user | Don’t say: Wheel chair bound. This term is offensive and out dated. It implies that people are permanently stuck in their wheelchairs. ‘wheelchair user’ is more appropriate because a wheelchair is used for mobility. |
| The person has‘cerebral palsy,’or a person “with” cerebral palsy. | Don’t say: Suffers from CP. This phrase implies that the person is suffering and does not have a good life. This is often incorrect as many people with CP have great lives. |
| Has cerebral palsy | Don’t say: Special needs. The term special’is now seen as demeaning implying they need less than others, rather then having something else |
| State their achievements only if they are out of the ordinary | Don’t Say Inspirational. The term inspirational can be offensive when used in simple everyday circumstances like getting out bed or going out with friends instead, say nothing and treat the person with CP same as other people. |
SGP KP Publishing – Cerebral palsy Disability Snapshot
6 Enabling social and economic participation
it is important to explore how a person with CP can be supported to enable or maintain their participation in mainstream activities, education and employment, taking into consideration their interests and aspirations as an individual.
to enable and maintain work, ongoing supports or adjustments at work may be needed. This might require NDIS funding for specialist disability or employment-related assessment services. Alternatively the person can access external employment retention and support initiatives such as Work Assist provided by the Disability Employment Services (DES) program.
disability Insurance Agency. NDIS funding for personal care, assistance with travel or assistive technology may also be required to support participation in the workforce.
of Information Act 1982 by National If the person is preparing to enter the workforce, NDIS funded supports can assist people with CP to build life skills, capabilities and independence. Supports can be used to assist them identify what their interests are and what work might be suitable. The supports can assist with building specific work related skills, manage barriers to work or develop a career plan. Additionally, they can help prepare people with CP to connect with other government services such as DES.
the under released was enabling social and economic participation – 9 Page 57 of 334
SGP KP Publishing – Cerebral palsy Disability Snapshot
Families and Carers
The following text was released under the Freedom of Information Act 1982 by the National Insurance Agency.
generally, the family of an individual with CP will play a vital role in their physical, social and emotional health for an extended period. A family’s ability to provide these supports will vary based on their own physical and mental health, work responsibilities, parenting capacity, resilience and whether the parent has a disability themselves.
familymembers of a person with cp are usually quite involved in providing direct support with personal care, daily living, assistive technology, implementing therapy, teaching and supporting communication, study and work, as well as attending medical and allied health appointments. This is often beyond the age you would generally expect a parent or family member to providesupport.
family members are often expected to advocate for their family member with cp, which is not always possible. Family members may feel disempowered, exhausted and lacking in confidence to challenge systemic barriers and mainstream services where supports are inadequate.
supports including respite for family members can be critical to maintaining their own health and wellbeing and allowing them to continue providing informal supports.
supporting and considering holistic family needs, as well as other informal supports is important when working with an individual with cp. this means the individual and those important to them can function at their best.
page 58 of 334 Families and carers – 10
#8 How can I tailor a meeting to suit a participant with
cerebral palsy? Every person with CP is unique and has different needs, wants, likes and dislikes. This means persons will vary in their support requirements.
Before the meeting
- Ask about any accessibility requirements needed for this individual.
- Ensure that all necessary accommodations are available at your location (e.g., ramps/elevators).
- Consider both timing ( duration) & logistics: It takes longer than usual before someone affected gets ready; it’s also more complex when traveling there due to physical limitations like needing assistance dressing or using public transportation safely without help from others present.) People might need breaks throughout meetings because they get tired quickly; some individuals struggle understanding information even if it’s simple enough otherwise—especially those who have intellectual disabilities which make them feel overwhelmed easily upon hearing too much detail at once so consider how long you plan on speaking together as well as what time works best for everyone involved beforehand) Ask whether additional supports such as pictures/signed language would be helpful during discussions since these could assist people better comprehend instructions given verbally rather than written down alone – especially important considering possible visual impairments affecting vision acuity directly impacting ability process text properly visually impaired may require larger print font sizes etc… Determine ahead of schedule whether an advocate/support person accompanies participant into session with them? Provide ample advance notice regarding purpose behind gathering, as participants often benefit preparing responses alongside representatives accompanying them particularly those utilizing speech generating devices must prepare messages stored within their device prior meeting starts Also provide any required materials in plain English/Easy Read format several days preceding event itself.
Communication During the Meeting
It is crucial remember each individual has unique needs & support requirements. Roughly 25% experience verbal communication challenges while having sensory issues that affect sight/hearing thereby also influencing linguistic abilities and articulation skills similarly many face difficulties planning complex sentences due to cognitive impairment or other factors making spoken words hard-to-understand; speak clearly using appropriate volume/speed; observe others familiarized with this person’s usual mode interaction, listen carefully clarify meaning if needed; check personal communication systems (e.g., books boards iPhones iPads) used by individuals present ensure adequate time provided for responding asking questions interacting throughout discussion period don’t assume all who struggle communicating have intellectual disabilities they might not use vocalization but still able understand
SGP KP Publishing - Cerebral Palsy Disability Snapshot
everything you say. When communicating with someone with CP where speech may be affected, speak normally and use age appropriate language.
- If the person has intellectual disability: Use short sentences and provide pauses to give enough time to hear process what you’re saying.Avoid using jargon.
- ifthe person’sspeech is difficult understand: Ask them repeat it.Speaking require great effort for peoplewithCP so repeatwhatyou’veunderstoodsothepersoncanconcentrate on saying part you did not understanD.If theyrepeat themselves several times still unableto understand,try alternative ways communicate such as gesturecommunication board/device or pointing alphabet display.- Speak usually but awareit takes while verbalise want say.Don’t correct jump ahead make assumptions about trying say.Somepeopleuse informal methods communication including facial expression gestures bodylanguagebehaviour.- Understand some need more meetings discuss everything.
9 Peak body consulted
The following organisations assisted in the development of this resource:
- Cerebral Palsy Support Network (members and staff)
- Cerebral Palsy Education Centre
- Members oof{the AusACPDM}
- Melbourne Disability Institute
- The Royal Children's Hospital (Victoria)
- Centre (Research Exce ence) - CP
- Murdoch Children’s Researh Instiute
- Victorian Paediatric Rehabilitation Service
- CP Austraia
- CP Alliane/Aliance Reasearch Insitut NSW
- CQL QLQD
- Abilily Centre WA
- Nova/Scosa SA
- Australin Cathlic Univerity.
FOI 25/26-3216
SGP KP Publishing - Cerebral palsy Disability Snapshot