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Cerebral palsy Disability Snapshot
This 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.
What is cerebral palsy?
Cerebral 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.
Different types and measures for describing cerebral palsy
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
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hemiplegia where only one side of the body is affected.
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 a person’s function in terms of their ability to perform gross motor actions, including sitting, standing, walking and running.
Common characteristics and impacts of cerebral palsy
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 misconceptions about cerebral palsy
Most people with CP can walk with minimal support. In fact, some individuals mobilise with little or no support so their disability may go unnoticed by others.
o The misconception is ‘everyone with CP uses a wheelchair or walking aid’.
Intellectual disability only affects 50% of people with CP. Some people with mild CP have an intellectual disability and some
o The misconception is ‘everyone with CP has an intellectual disability’.
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Approximately 10-30% of cases have a genetic component, with 1% being familial (multiple siblings have CP).
o The misconception is ‘CP is not a genetic condition’.
CP is not progressive or a life-limiting condition. In rare cases where a person has profound CP, associated risk factors may reduce their life expectancy.
o The misconception is ‘everyone with CP has a limited life expectancy’.
Most adults with CP can have regular sex. In some cases, physical limitations, societal attitudes and other social barriers may present challenges to sexual activity.
o The misconception is ‘people with CP cannot be sexually active’.
People with CP have the same reproductive systems as everyone else. Women with CP can expect to have typical pregnancies.
o The misconception is ‘people with CP cannot have babies’.
Non-verbal people with CP are most likely able to understand you. An inability to communicate verbally does not mean the person has an intellectual disability.
o The misconception is ‘everyone who is non-verbal and has CP also has an intellectual disability and cannot understand me’.
Some people with CP may appear unsteady if they have uncoordinated, shaky, walking patterns.
o The misconception is ‘a person with CP appears to be drunk’.
Everyone has the right to full citizenship and inclusion.
o The misconception is ‘people with CP belong together and away from their community’.
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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. It is ok to use in a 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. If discussing intellectual function use “intellectual disability”. The term retarded is outdated, offensive and harmful. It is not socially acceptable, irrespective of context.
Wheelchair user Don’t say: Wheelchair bound. This term is offensive and outdated. 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 Don’t say: Suffers from CP. This phrase implies that the palsy, or is a person ‘with’ person is suffering and does not have a good life. This is cerebral palsy. 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 derogatory, implying that the person is less than, or that people with CP are only amazing because of their CP and nothing else.
State their achievements Don’t say: Inspirational. The term inspirational can be only if they are out of the offensive when used in simple everyday circumstances like ordinary getting out of bed or going out with friends. Instead, say nothing and treat the person with CP the same as other people.
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.
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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.
NDIS funding for personal care, assistance with travel or assistive technology may also be required to support participation in the workforce.
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.
Families and carers
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.
Family members 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 provide support.
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.
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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 people with CP will have varied support requirements.
Before the meeting
Ask if there are any accessibility requirements to consider. Check if the meeting place meets the participant’s needs. (For example, if the
participant is a wheelchair user the meeting place should have a ramp and/or
elevator and spacious disabled toilet with a railing). Consider the time of day and duration of the meeting. It can take a number of hours
for a person with CP to get up, dressed and ready to leave their home. Travel is also
often more complex. People with CP may require breaks during meetings. Some people become fatigued
easily and others with an intellectual disability may be overwhelmed with complex
information. Consider the length of the meeting and ask what time of day suits them
best. Ask the person if they require additional supports to understand information (such as
pictographs or sign language). Check if the person has a hearing or vision
impairment which may impact on how they need to receive information. Check to determine whether the participant will be bringing an advocate or support
person with them. Provide as much information as possible about the purpose of the meeting ahead of
time, as they may need to discuss and prepare their responses with their support
person. People using a speech generating device to communicate may need to
prepare messages and store them in their device before the meeting. Provide any written material in plain English or Easy Read well before the meeting if
this is required.
Communication during the meeting
It’s important to remember each person is different in their communication and the
support they might need. Approximately 25% of people with CP have challenges
with verbal communication. They may have sensory issues that affect their vision or
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hearing, which may also affect their language and speech. They may have an
intellectual disability with difficulty in planning how to say complex sentences.
People with CP may have speech that is difficult to understand. When speaking, use appropriate volume and speed. Speak to the person directly
and observe how those known to the person communicate with them. Listen to the
person and clarify understanding. Check if the person has a personal communication system such as a
communication book, board, iPhone, iPad or speech generating device. If they do,
ensure you give them enough time to respond, ask questions and interact during the
meeting. Don’t assume people who have communication difficulties have intellectual
disabilities. They may not use speech to communicate but may still be able to
understand 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 an intellectual disability, use short sentences and provide pauses
to give the person enough time to hear and process what you are saying. Avoid
using jargon. If the person has speech which is difficult to understand, you may need to ask them
to repeat what they are saying. Speaking can require great effort for people with CP,
so repeat what you have understood so the person can concentrate on saying the
part you did not understand. If the person has repeated themselves several times
and you are still unable to understand them, try alternative ways to communicate
such as using a gesture, communication board/device or pointing to an alphabet
display. Speak as you usually would. Be aware it may take a while for someone to verbalise
what they want to say. Do not correct them or jump ahead or make assumptions
about what they are trying to say. Some people may use informal methods to
communicate, including facial expression, gestures, body language and behaviour. Understand some people may need more meetings to discuss everything.
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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 of the AusACPDM Melbourne Disability Institute The Royal Children’s Hospital (Victoria) Centre of Research Excellence - CP Murdoch Children’s Research Institute Victorian Paediatric Rehabilitation Service CP Australia CP Alliance/Alliance Research Institute NSW CPL QLD Ability Centre WA Novita/Scosa SA Australian Catholic University.
Helpful links
Cerebral Palsy Support Network
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Version control
Version Amended Brief Description of Change Status Date by
1.1 KHM678 Annual review and new information added on DRAFT 2020-02-06 employment.
2.0 CRG656 Class one approval APPROVED 2020-03-13
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