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Cerebral palsy Disability Snapshot

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Cerebral palsy Disability Snapshot

SGP KP Publishing

Exported on 2024-10-18 03:10:27

Page 50 of 308

Table of Contents

1 What is cerebral palsy? …………………………………………………………………………………………. 4 2 Different types and measures for describing cerebral palsy …………………………………… 5 3 Common characteristics and impacts of cerebral palsy …………………………………………. 6 4 Common misconceptions about cerebral palsy ……………………………………………………… 7 5 Language and terminology ……………………………………………………………………………………. 8 6 Enabling social and economic participation …………………………………………………………… 9 7 Families and carers ……………………………………………………………………………………………… 10 8 How can I tailor a meeting to suit a participant with cerebral palsy?……………………… 11 9 Peak body consulted …………………………………………………………………………………………… 13 10 Helpful links …………………………………………………………………………………………………….. 14

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SGP KP Publishing – 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.

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1 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.

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2 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
  • 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.

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3 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.

4 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.
    • 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
    • The misconception is ‘everyone with CP has an intellectual disability’.
  • Approximately 10-30% of cases have a genetic component, with 1% being familial (multiple siblings have CP).
    • 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.
    • 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.
    • 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.
    • 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.
    • 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.
    • The misconception is ‘a person with CP appears to be drunk’.
  • Everyone has the right to full citizenship and inclusion.
    • The misconception is ‘people with CP belong together and away from their community’.

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 palsy, or is 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 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 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 of bed or going out with friends. Instead, say nothing and treat the person with CP the same as other people.

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.

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.

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7 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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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 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 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

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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 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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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 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.

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SGP KP Publishing – Cerebral palsy Disability Snapshot

  • Cerebral Palsy Support Network

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Deafblind Disability Snapshot

SGP KP Publishing

Exported on 2024-10-18 03:10:47

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Table of Contents

  • Peak body consulted …4
  • What is deafblindness? …5
  • How many people are deafblind? …6
  • Types of deafblindness …7
  • What are the characteristics of deafblindness? …8
  • Psychosocial impact of deafblindness …9
  • Communication …10
  • Enabling social and economic participation …11
  • How can I tailor a meeting to suit a participant with deafblindness? …12
  • Communication access and supports …13
  • Written communication …14
  • Aids and equipment …15
  • Technology …16
  • Helpful links …17

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SGP KP Publishing – Deafblind Disability Snapshot

This Disability Snapshot provides general information about deafblindness 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.

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SGP KP Publishing – Deafblind Disability Snapshot

Peak body consulted

In developing this resource we consulted with the peak body representing people with this disability, Deafblind Australia.

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2 What is deafblindness?

Deafblind is a term used when a person has a combination of both impaired vision and hearing. Dual sensory loss or dual sensory impairment are other terms used to describe deafblindness.

Deafblindness is described as a unique and isolating sensory disability having both hearing and vision loss or impairment. The disability can have a significant effect on communication, socialising, connecting with others, mobility and daily living (Deafblind Australia, 2004).

A person with deafblindness may strongly identify with the blind culture or the deaf culture (or in some cases, neither) as well as the culture of their family. An understanding of the complexity of each person’s culture is important to respectfully establish communication, language and learning.

3 How many people are deafblind?

  • Studies have reported 0.2% to 3.3% of the population may be deafblind.
  • In Australia nearly 100,000 people are reported to be deafblind and two-thirds of these people are over the age of 65 years.
  • One study reported 36% of individuals over the age of 85 years are deafblind.

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4 Types of deafblindness

Congenital deafblindness is a term used when a person is born deafblind or when their combined hearing and vision impairment exists before any form of language or communication has developed.

Congenital deafblindness can occur due to:

  • hereditary or genetic conditions
  • infection contracted by the mother during pregnancy
  • disease
  • infection or injury that affects a child early in their development.

Acquired deafblindness is a term used when a person:

  • is born deaf or hard of hearing and later in life experience a deterioration in their vision
  • has deafness or hearing impairment at birth and has vision impairment later in life
  • is born with a vision impairment or blindness and has hearing loss later in life
  • has vision and hearing that deteriorates at a later stage in their life through accident, injury or disease
  • experiences deafblindness through the ageing process.

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5 What are the characteristics of deafblindness?

  • A small number of people will have no sight and no hearing.
  • Other people who are deafblind will have varying degrees of vision impairment and of hearing impairment.
  • Experiences and understanding of their world will be different depending on whether a person was born deafblind or if they acquired vision and hearing loss through deterioration later in life.
  • Becoming used to new environments and travelling independently and safely are challenges.
  • Communication is a key challenge for all people with deafblindness.
  • Balance issues may affect some people with deafblindness, particularly those with Usher Syndrome type 1. These balance issues can affect a person’s mobility.

6 Psychosocial impact of deafblindness

The impact of deafblindness on a person’s life will vary. The impact on a person who has a severe vision and hearing impairment can be significant.

Depression, anxiety, frustration, and boredom can occur from the isolation and other challenges experienced by people with deafblindness. A person with this diagnosis may experience low self-esteem and lack of confidence to move about independently and carry out daily tasks.

Communication

People with deafblindness are a very diverse group because of the varying degrees of their vision and hearing impairments. Some people who are deafblind may also have other disabilities. A wide range of communication methods might be used, including:

  • speech, oral and aural communication (communication using verbal and non-verbal signals)
  • various forms of sign language including tactile and deafblind fingerspelling alternative and augmentative communication (adding to communication often through devices like tactile feeling boards, use of signs and gestures)
  • print and braille.

Do not assume all people who are deafblind communicate in the same way as they may use one primary form of communication or a combination of these. Some people who are deafblind (and people who are blind) use social haptics, a form of communication which involves touch signals on the body.

Because of the wide range of communication methods, it can be difficult for another person to know how to communicate with a person who is deafblind. Many organisations fail to recognise communication needs and preferences for people who are deafblind. This is especially the case when arranging the most appropriate interpreter. Different types of interpreters can be needed, for example tactile or Australian Sign Language (Auslan).

You need to be aware of, and have confidence to ask the person who is deafblind about their communication requirements. A person who is deafblind is often familiar and comfortable in explaining how they prefer to communicate.

8 Enabling social and economic participation

A person’s support needs for social and economic participation will vary depending on their areas of strength and level of function. It is important to explore how a person with deafblindness can be supported to enable their participation in mainstream activities, education and employment, taking into consideration their interests and aspirations as an individual.

This may include using supports to assist a person through a vocational ‘discovery’ process to explore their strengths and interests in the context of work. For those who have acquired deafblindness later in life, re-exploring their strengths and interests will be important.

Individual supports can enable participants with deafblindness to build life skills capabilities and greater independence; including in the work place. Volunteering can be a first step in building confidence and connecting to the community and the idea of employment. Peer support from other people with deafblindness can also play a key role in improving social and economic participation.

To maintain work, ongoing support and customisation of work tasks to match the level of function should be considered, along with any needs related to personal care in the work place or assistance with travel. Supports should take into account the degenerative nature of some people’s sensory abilities and mobility. This might require NDIS funding for specialist disability or employment related assessment services as well as access to employment retention and support initiatives such as Work Assist provided through the Disability Employment Services (DES) program. If regular, intensive ongoing support is required to assist a participant with deafblindness maintain meaningful participation in the workplace, supported employment supports could be considered.

Assistive technology or interpretation may also be required to support participation in work.

9 How can I tailor a meeting to suit a participant with deafblindness?

Consider the following for face to face communication:

  • ask the person who is deafblind about their communication requirements and book the most appropriate interpreter/s. For information on deafblind interpreters refer to Communication access and supports below
  • face the person and make eye contact
  • identify yourself verbally and/or by signing. Say your name
  • physically touch the person on the shoulder or elbow. The sense of touch is a core communication means for people who are deafblind. However each person has their own preference and sensitivity in terms of being touched. Ask each person their preference.

If the person has a preference for touch as a method of communication, you may find it beneficial to softly touch the back of your hand on the back of the person’s hand or arm to ensure they are aware of you and are ready to communicate.

A lack of response by a person who is deafblind should not be considered as being rude, but rather as a sign of ineffective communication. This would also be the case if a person who is deafblind moves away from the speaker.

Observe the facial expressions of the person who is deafblind – an expression suggesting worry can indicate confusion or unhappiness with the type and effect of the communication.

Conversely, a person who is deafblind might interpret the other person’s message and intentions by the person’s body language. So, friendly and open body language will aid effective communication.

10 Communication access and supports

People who are deafblind can live independent lives and may travel with CommGuides. CommGuides are specialised support workers that understand the needs of deafblindness. They facilitate independent community participation through communication support and guiding support.

Deafblind interpreters are important to ensure people who are deafblind receive information and communicate effectively in more complex situations such as attending appointments and professional services.

A CommGuide can also be used for communication support during short informal interactions such as at the shops or at the gym. However, for any formal meetings or workshops an interpreter should be booked. In many instances two interpreters will be required depending on the length of the meeting and the potential need for tactile signing.

11 Written communication

Some people who are deafblind have not received appropriate support to access education and may require additional assistance with literacy and numeracy tasks. It is also important to note that for people who are deafblind and have Auslan as their first language, English is a second language.

Plain language should always be used. It should be simple, clear and straight to the point. Explain the context of the communication and keep it focused and relevant. Increase understanding by using examples. Avoid slang, acronyms and bureaucratic language.

12 Aids and equipment

There are a variety of aids and equipment which many people with deafblindness require to access communication, information and their environment. Common aids and equipment used by people with deafblindness include:

  • Hearing aids and Cochlear implants
  • Wireless microphones with Blue Tooth (Roger Pens)
  • White mobility canes
  • Seeing eye dogs
  • Home/personal alert systems
  • Magnifiers, such as Zoom text
  • Jaws screen reader
  • Closed circuit televisions
  • Smart phone with accessibility apps (sometimes paired with braille display)
  • Braille devices and displays (Braille watches)
  • Smart watches with accessibility apps including haptics
  • Vibration devices such as ‘Ditto’.

13 Technology

Technology is very important to people with deafblindness. Technology can assist with communication, social and community engagement, access to information and education, transport assistance (GPS), safety in the home and community and activities of daily living.

The following accessibility considerations may support a person to be able to access content on websites:

  • adjustable font sizes
  • contrasting colours
  • accessibility for screen reading software
  • plain language
  • image descriptions – text format screen readers do not pick up images, so picture description is required.

14 Helpful links

  • Deafblind Australia
  • Deafblind Information website

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