Cerebral Palsy

An information guide for

parents and families
Cerebral Palsy
An information guide for parents and families

First edition 1989

Second edition 2000
Third edition 2006
Fourth edition 2016

All rights reserved. No part of this publication

may be reproduced, stored in a retrieval system,
or transmitted, in any form or by any means,
electronic, mechanical, photocopy or otherwise
without the written permission of the publisher,
The Royal Children’s Hospital (RCH), Melbourne.

ISBN 0958741654

This book was written and edited by

Dinah Reddihough in association with members
of the RCH Developmental Medicine team,
with other departments providing help and
advice. We particularly thank Dr Simon Harvey
and Professor Kerr Graham who wrote
specific sections, and Marijke Mitchell
who coordinated the production.

The valuable assistance provided by

Vicki Cavalieros from the Cerebral Palsy
Support Network, and Diane McCarthy from
the Association for Children with a Disability,
is also gratefully acknowledged.

The booklet was designed by the RCH Educational

Resource Centre.

Funding was provided by the NHMRC Centre

of Research Excellence in Cerebal Palsy.
Contents
About this guide. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

What is cerebral palsy?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

What are the causes of cerebral palsy?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 1

Commonly asked questions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Treatment, therapy and early intervention . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

What do parents need?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

Who is available to help my child?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

Which organisations are helpful?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33

Equipment and aids . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40

In conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47

Helpful resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48
About this guide
This book has been written primarily for parents who have a child
with cerebral palsy. If your child has recently been diagnosed as
having cerebral palsy, you are probably feeling shocked by the news
and overwhelmed by the implications of the diagnosis. This is a
normal reaction and completely understandable. We know that
parents have many questions, concerns and fears in relation to their
child’s health and development. Remember that you are not alone
and that there are many supports for children and their families
that will provide assistance and guidance when you need it.

We have written this book to help answer some of your questions.

Every child with cerebral palsy is different. In some children the
condition may be so slight that he or she is only a little clumsy with
certain movements. Other children may have more complex problems. 3
Because each child is different, the information is presented in a
general way, and may or may not be relevant to your child. Please
discuss your own child’s needs with his or her therapists, social
worker, nurse, psychologist or doctor. They may not be able
to answer all your questions, but they will honestly try to tell you
what they do know, or direct you to someone who may be able
to help.

This book will discuss the different types of cerebral palsy,

the causes of cerebral palsy, some associated problems, and the
range of treatments available. We have provided information about
support services and where to turn to for help. We hope to convey
the message that no matter how difficult things may seem at present,
and despite the many challenges that you and your family may face
over the coming years, help and support is available.
 What is cerebral palsy?
The brain controls all that we do. Different parts of the brain control the
movement of every muscle of the body. In cerebral palsy, there is damage
to, or lack of development in, one or more of these areas of the brain.
‘Cerebral’ refers to the brain.
‘Palsy’ can mean weakness or paralysis or lack of muscle control.
Therefore cerebral palsy is a disorder of muscle control which results from some
damage to part of the brain. The term cerebral palsy is used when the injury has
occurred early in life, to the developing brain.
Children with cerebral palsy can have problems such as limited mobility, weakness
of hands and/or legs, stiffness or floppiness, clumsiness or poor coordination,
difficulty starting and controlling movement and reduced smoothness (fluidity)
of movements, shakiness and difficulties with balance. These difficulties can range
from mild to severe. In mild cerebral palsy, the child may be slightly clumsy in one
arm or leg, and the symptoms may be barely noticeable. In severe cerebral palsy,
the child may have a lot of difficulties in performing everyday tasks and movements.
4

Movement

Speech

Sight

Balance
What are the various types Athetosis: this is the word used for the
uncontrolled extra movements that
of cerebral palsy? occur particularly in the arms, hands
There are several different types of and feet. The lack of control is often
cerebral palsy: most noticeable when the child starts
to move—for example, when the child
spastic cerebral palsy
attempts to grasp a toy or a spoon. In
This is the most common type of addition, children with athetoid cerebral
cerebral palsy. Spasticity means palsy often have very weak muscles or
stiffness or tightness of muscles. feel floppy when carried.
The muscles are stiff because the
messages to the muscles are being ataxic cerebral palsy
sent incorrectly from the damaged This is the least common type of
parts of the brain. cerebral palsy. Ataxic (or ataxia)
When people without cerebral palsy is the word used for unsteady shaky
perform a movement, groups of movements or tremor. Children with
muscles contract whilst the opposite ataxia also have problems with balance.
groups of muscles relax or shorten
mixed types
in order to perform the movement.
In children with spastic cerebral Many children do not have just one 5
palsy, both groups of muscles may type, but a mixture of several of these
contract together, making the movement patterns.
movement difficult. Some of these concepts are difficult to
understand. Please discuss them
dyskinetic cerebral palsy
further with your therapist or doctor.
This refers to the type of cerebral palsy
with abnormal involuntary movements.
It is divided into two types of movement
disorders, called dystonia and athetosis.
Dystonia: this is the term used for
sustained muscle contractions that
frequently cause twisting or repetitive
movements, or abnormal postures.
 Which part of the body is affected?
Again, this varies greatly from one child to another. Certain words are used to
describe the parts affected:

Hemiplegia: the leg Diplegia: both legs Quadriplegia: both arms

and arm on one side of the are predominantly and both legs, and the
body are affected (also affected. Children with trunk, are affected
described as hemiparesis). diplegia usually also (also described as
have some difficulties quadriparesis). The
with their arm and muscles of the face
hand movements. can also be affected.
Hemiplegia Diplegia Quadriplegia

Affected area Less affected area Unaffected area

How severe is the movement disorder?

The Gross Motor Function Classification System (GMFCS) is a method of
describing the range of gross motor function in children with cerebral palsy.
The GMFCS describes five ‘levels’ of motor function, with a particular emphasis
on abilities and limitations in the areas of sitting, standing and walking.
Children with GMFCS levels I and II walk independently, children with GMFCS
level III require sticks, elbow crutches or walking frames, and children with
GMFCS levels IV and V usually require a wheelchair. You can see a diagram
of these different levels on the opposite page.
Using GMFCS levels and a test of gross motor function called the Gross Motor
Function Measure (GMFM), it has been possible to draw ‘motor growth curves’.
From these curves, we can begin to make a prediction about the pattern of
gross motor development of children according to their GMFCS level.
Gross Motor Function Classification System
Extended and revised

GMFCS Level I
Children walk at home, school, outdoors and in the
community. They can climb stairs without the use of
a railing. Children perform gross motor skills such as
running and jumping, but speed, balance and
coordination are limited.

GMFCS Level II
Children walk in most settings and climb stairs holding
onto a railing. They may experience difficulty walking
long distances and balancing on uneven terrain, inclines,
in crowded areas or confined spaces. Children may walk
with physical assistance, a handheld mobility device
or used wheeled mobility over long distances. Children
have only minimal ability to perform gross motor skills
such as running and jumping.

GMFCS Level III

7
Children walk using a hand-held mobility device in
most indoor settings. They may climb stairs holding
onto a railing with supervision or assistance. Children
use wheeled mobility when traveling long distances
and may self-propel for shorter distances.

GMFCS Level IV
Children use methods of mobility that require physical
assistance or powered mobility in most settings.
They may walk for short distances at home with
physical assistance or use powered mobility or a body
support walker when positioned. At school, outdoors
and in the community children are transported in a
manual wheelchair or use powered mobility.

GMFCS Level V
Children are transported in a manual wheelchair
in all settings. Children are limited in their ability to
maintain antigravity head and trunk postures and
control leg and arm movements.

GMFCS descriptors copyright © Palisano et al. (1997) Dev Med Child Neurol 39:214-23 CanChild.
Illustrations copyright Version 2 © Bill Reid, Kate Willoughby, Adrienne Harvey and Kerr Graham, The Royal Children’s Hospital Melbourne.
 What are the causes of cerebral palsy?
Cerebral palsy occurs in about two Current research suggests that
in every thousand children. There are approximately 75% of all cerebral palsy
many different risk factors and some is caused by complications that occur
known causes. A problem with the during pregnancy, 10–15% by difficulties
brain can occur: at birth or in the newborn period, and a
further 10% by illnesses or accidents in
1. If the brain does not grow or form
the early weeks, months or years of life.
properly. The result is that children
may have brain malformations. Conditions that lead to permanent
neurological deficits up to the age of
2. In the early months of pregnancy, about two years (some groups include
for example, if the mother is children up to five years) are included
exposed to certain infections such in the cerebral palsy group.
as Rubella (German Measles),
or Cytomegalovirus (CMV). Children particularly at risk for cerebral
palsy are those infants who have been
3. During labour or at birth, born extremely prematurely. It is
for example, if the baby does sometimes difficult to be sure whether
8 not receive enough oxygen. the neurological condition pre-dated
4. In the period shortly after birth, the premature delivery or whether the
for example, when an infant complications that occurred due to
develops a severe infection, prematurity are responsible for the
such as meningitis, in the first child’s cerebral palsy.
few days or weeks of life. Almost all families continue to worry
5. In children having accidents about the cause and why it happened.
in the early years of life, causing This is understandable and a natural
permanent brain injury. These response. Parents often blame
children are also considered to themselves for something they may
have cerebral palsy. or may not have done during the
pregnancy or birth. But usually the
In some children it is important to event for which the family blame
note that, despite a careful review themselves is either not the cause or
and various tests, the cause of could not have been prevented. It is
cerebral palsy remains unknown. helpful if families can discuss and share
With technologies such as MRI brain their concerns and fears with each
scans and sophisticated blood tests, other and with the people involved
more causes are slowly being identified. in the care of their child.
9
 Commonly asked questions

How is the diagnosis made? 3. Epilepsy: Epilepsy may develop in

about one in three of all children with
Cerebral palsy is a clinical diagnosis
cerebral palsy. There are various types
based on the recognition of delays in
of epilepsy. Some children may only
reaching motor milestones, for example,
have very occasional seizures whereas
delays in sitting, standing or walking, and
in others the condition may be more
changes in muscle tone and/or reflexes.
persistent, and may require the advice
A brain MRI is recommended if the cause
of a paediatric neurologist.
is not apparent. The MRI may provide
information about the approximate time 4. Intellectual or learning disability:
at which the brain injury occurred. In There is a wide range of intellectual
about 10% of children with cerebral palsy, ability in children with cerebral palsy.
the brain MRI is normal. Sometimes Unfortunately it is often difficult to
further metabolic and genetic tests are assess learning ability in the early
undertaken to establish the cause of years of life. Children with severe
cerebral palsy. physical disabilities may have normal
intelligence. If there is a delay in learning
10
in the early years of life, the term
What other problems ‘developmental delay’ is sometimes
may my child have? used. Developmental delay is a
Sometimes, the child may have additional descriptive term used when a young
difficulties. These could include: child’s development is delayed in one
or more areas compared to that of
1. Problems with hearing: other children.
All children should be seen by the
hearing specialist (audiologist) 5. Speech and communication
to check for hearing difficulties. difficulties: Children may have
difficulty in understanding speech
2. Problems with eye sight: (receptive language difficulties) or
Children with cerebral palsy very with oral speech (talking or expressive
commonly have squints. They can language difficulties). They may
also have other problems with vision. be reliant on an alternate means
Most children are checked by the eye of communication such as a
specialist (ophthalmologist) at some communication book or an
time during their early years. electronic device.
6. Perceptual difficulties: Problems developed to provide guidance about
such as judging the size and shape when X-rays should be undertaken in
of objects are termed perceptual individual children. You can find them
difficulties, and may not be apparent at www.aacpdm.org/UserFiles/file/
until school age. consensus-statement-hip-surveillance-
australia.pdf
7. Gastro-oesophageal reflux:
Food comes back up the oesophagus Scoliosis (curvature of the spine) may
(gullet) more commonly in children also occur and is often seen in children
with cerebral palsy. Symptoms may with more severe cerebral palsy.
include vomiting and discomfort during 9. Constipation: This is common in
feeds. A complication of gastro- children with cerebral palsy. The cause
oesophageal reflux is inflammation is not always clear. Sometimes it relates
of the lower oesophagus (called to the lack of usual mobility, or it may
oesophagitis). Children with this be related to the difficulty of eating a
problem may be very unsettled high fibre diet.
or irritable.
10. Bone disease: some children with
8. Orthopaedic problems: As children cerebral palsy are not able to be as active
grow and develop, muscles with as children without disabilities and may
spasticity or stiffness may become 11
have some degree of osteoporosis.
shortened, causing muscle or joint Fractures can occur with very minor
contractures. This is most likely to occur injuries and sometimes during normal
at the ankle, knee, hip, elbow and wrist. activities such as nappy change or putting
In addition, children with cerebral palsy an arm through a sleeve. Occasionally
are at risk for developing hip subluxation children need special medication to
(movement of the head of the thigh bone promote bone mineralisation.
out of the hip socket) and dislocation. 11. Undescended testes: there is a
This is most likely to occur in children higher frequency of undescended testes
that are not walking independently in boys with cerebral palsy.
(GMFCS levels III, IV and V). Regular
monitoring and surveillance with hip
X-rays is important. Physical examination remember
of the hips is not enough so all children No one child has all these problems.
with cerebral palsy affecting both lower There are treatments available to
limbs (diplegia, quadriplegia) require help manage them which are
regular hip X-rays (particularly children discussed in a separate section
with GMFCS levels III, IV and V). Hip (see page 15).
surveillance guidelines have been
12
Will my child get better? which can lead to a tightening of
muscles, and a problem such as toe
‘Cerebral palsy’ refers to a permanent
walking may become more apparent.
condition, and the symptoms
Stiffness in muscles may be due to
associated with this condition
spasticity, contractures or a mixture
(such as muscle weakness or stiffness,
of both. It can be difficult to tell the
and unwanted movements) remain
difference but it is important to
throughout the lifetime of a person with
distinguish between spasticity and
cerebral palsy. However, children and
shortening as they are treated
their families can learn to cope with the
differently.
condition as the child grows. Treatment
often brings about improvement, 3. Any common childhood illness,
though not a cure. such as an ear or throat infection,
can cause a child’s progress to come
to a standstill for a while.
Will my child’s condition
deteriorate? 4. E
 motional stress — when a child
feels he or she is being ‘pushed’
The answer is ‘No’. The damage
to achieve a skill that they think is
done to the brain early in life does
difficult for them to do, they may
not worsen, however sometimes
react by becoming stubborn or 13
it may seem that the child’s condition
refusing to cooperate. In a child with
is becoming worse. There are many
cerebral palsy this can certainly be
reasons for this apparent deterioration
a reason for lack of progress, but it
and some are listed below.
does not mean that their condition
1. As children grow older, more is has deteriorated.
expected of them. For a child with
If your child loses previous skills, discuss
cerebral palsy, simple tasks such as
this with your therapist and/or doctor.
learning to dress and eat
independently may take a longer time
and may be achieved later than usual.
This delay in their development might
make it seem that deterioration is
occurring, but this is not the case.
2. A
 s the child grows and uses his or
her muscles more and more, they
may become tighter. During growth
spurts, the child’s bones may grow
more quickly than their muscles,
 Will my child learn Will my child be able to look
to walk? after themselves?
Parents generally want to know the The aim of treatment is to encourage
answer to this question shortly after the child to learn to be as independent
the condition is diagnosed. as possible. Some children who have
mild cerebral palsy will have not
Unfortunately, it is often not possible
have any problems in achieving
to be sure until after the child has been
independence. For others, it will be a
observed by the paediatrician and
slow process. In some with severe
therapist for a period of time. Children
difficulties, considerable assistance
with mild cerebral palsy (GMFCS levels
from others will always be needed.
I and II) learn to walk independently.
Children with a moderate degree It is always important to encourage
of cerebral palsy (GMFCS level III) your child to do as much as possible
generally walk with sticks or walking for him or herself.
frames. Children with more severe
motor problems (GMFCS level IV
and V) generally require a wheelchair
Will my child develop
for most activities. Over the age of behaviour problems?
14 about two years, the ‘motor growth Over the course of their development,
curves’ described on page 6, are helpful some children with cerebral palsy may
in determining whether a child is likely develop behaviours that are disruptive,
to learn to walk independently. unsociable or difficult to manage.
They may also become frustrated
due to being unable to move or
Will my child learn communicate, for example, a child
to talk? with little effective speech may
There is a wide range of communicative resort to screaming in order to
ability among children with cerebral initiate interaction with others.
palsy. Some children will not have any These behaviours usually respond to
difficulties learning to talk. Other modification, or gradually recede with
children may have difficulties with the emergence of a skill that allows
controlling the movements around the child greater independence.
their mouth, or delayed development Psychologists and other members of
of cognitive (learning) skills; they will the team including speech pathologists
need help from a speech pathologist to may be able to assist and suggest ways
develop speech or to learn how to use to support the child while new skills are
alternative methods of communication. emerging. Every child has a unique
personality and individual ways must be Will my next child have
developed to motivate and encourage
the child to feel good about him or
cerebral palsy?
herself and to be successful and happy. This is extremely unlikely, but you
should discuss this with your doctor.
Will my child have a normal Parents should feel free to seek advice
life expectancy? from their doctor about genetic
counselling and obstetric care of
Most children with cerebral palsy future pregnancies.
are healthy, and can expect a normal
life span. A small group of children
with extremely severe cerebral palsy Treatment, therapy and
and associated conditions such as
epilepsy may be at risk of reduced life
early intervention
expectancy (for example, they may What treatments are
develop recurrent chest infections or
available to help my child?
have prolonged seizures).
This brief summary discusses
both older and newer interventions.
Will I be told everything that Many new treatments have become
15
doctors and therapists know available over the past two decades.
The management of cerebral palsy
about my child?
requires a team approach with the
The answer is ‘Yes’. When staff have parents, therapists, doctors, nurses
difficulty answering questions, parents and teachers all contributing to ensure
may feel that doctors and therapists are optimal progress is made.
holding back information and not telling
all they know. However, this is not the Treatment may be considered in these
case, and parents are told as much as is three areas:
known about the child at the time. 1. Treatment of the movement disorder.
A booklet produced by the Association 2. Treatment of the associated medical
for Children with a Disability, entitled conditions.
Helping You and Your Family has useful
3. Provision of therapy and early
information about relationships with
intervention services.
health professionals (http://acd.org.au/
wp-content/uploads/2014/07/ACD-
resource-Helping-You-and-Your-Family-
3rd-edition-2013-PDF-1.2MB.pdf).
 What treatments are technique using dynamic Lycra® splints
(sometimes called ‘Second Skin™’)
available for the movement may also assist some children with
disorder? their upper limb movements.
Paediatric therapists play a key role in
3. Botulinum toxin A (‘Botox’)
the management of movement disorders.
is used as a treatment for tight or
Physiotherapy, and sometimes
spastic muscles, most commonly
occupational therapy, is essential to
when tightness in the calf or hamstring
provide a program to encourage motor
muscles is interfering with progress
development. Therapy is also necessary
in learning to move, although it is
to implement the strategies discussed
increasingly being used in other parts
below. Parents should discuss their
of the body including the upper limbs.
treatment options with their therapist
A light anaesthetic or sedation is
or doctor. It is important to remember
sometimes required for the injections.
that some treatments may not be
There may be some temporary mild
suitable for your child.
pain at the injection site but other side
1. Orthoses (sometimes known as effects are uncommon. Botox can
braces) are used for the lower limbs reduce spasticity and provide a period
by many children at some stage in their of more normal muscle growth and
16
development. These are custom made development, which may be
and individually fitted for each child accompanied by progress in the child’s
from a combination of materials movement abilities. Disadvantages
including high temperature plastics include the fact that the administration
with velcro closures. Orthoses can be of Botox involves injections; the
worn inside an ordinary shoe. effects of the drug are not completely
predictable and are of short duration;
splinting and the toxin is costly.
2. Upper limb splints (also called
orthoses) are made by occupational medications
therapists to either maintain range 4. Oral medications may be effective
of movement or facilitate better grasp. for spasticity and dystonia.
Both purposes aim to improve a
•D
 iazepam (‘Valium’) is a good
child’s overall use of their arm and
medication for spasticity, but may
hand. Splints are individually made
cause sedation. However it is useful
for each child and depending on their
following surgery, particularly
purpose may be fabricated from low
orthopaedic procedures.
temperature plastic, and/or Lycra®
or neoprene. A specialist splinting
•D
 antrolene (‘Dantrium’) is used Other drugs used for dystonia include:
infrequently and may cause 17
•B
 enzhexol hydrochloride (‘Artane’).
drowsiness, dizziness and diarrhoea.
Side effects include irritability and
• Baclofen (‘Lioresal’) is often used in worsening of constipation.
children with severe spasticity and/or
• L -Dopa (‘Sinemet’ ‘Madopar’). Side
dystonia. Side effects are uncommon
effects include anxiety and tearfulness.
but may include nausea. It is reported to
aggravate seizures though this is rare. •G
 abapentin (‘Neurontin’). Side effects
are very uncommon but agitation is
Very occasionally, a pump is implanted
reported on rare occasions.
under the skin. The pump is connected
to a tube which delivers the drug into surgery
the space around the spinal cord.
5. Selective dorsal rhizotomy
This type of treatment is only suitable
is a major operation on the spine
for a small number of children with
occasionally used to reduce spasticity
severe spasticity and/or dystonia and is
in the lower limbs. It is used mainly in
known as intrathecal baclofen therapy.
young children with spastic diplegia
A separate booklet is available.
aged 3–7 years. Following the procedure
a very extensive rehabilitation period
is required.
 6. Orthopaedic surgery: Surgery is • The knee: Lengthening of the
mainly undertaken on the lower limb, hamstrings or transferring one of
but occasionally in the upper limb. the hamstrings from below the knee
Some children require surgery for to above the knee can dramatically
scoliosis, particularly children with more improve straightening of the knee
severe motor disorders. Physiotherapy and the overall walking pattern.
is an essential part of post-operative
• The ankle and foot: This is the most
management. Gait laboratories have
common area where orthopaedic
several cameras (video and/or infrared)
surgery is required. However, it is
placed around a walkway which are
essential that the calf muscle not be
linked to a computer. Using this
overly weakened by too many or too
equipment it is possible for the staff to
frequent injections of Botulinum toxin
determine why children with cerebral
nor by early surgical lengthening.
palsy walk in the way that they do.
They are useful in planning the surgical Most children with diplegia require
program for children who are able to orthopaedic surgery in several different
walk independently or with sticks or areas (for example, hip, knee, and
walking frames. ankle/foot). Frequently this involves
a single hospitalisation and is called
•T
 he hip: Soft tissue surgery is rarely
18 ‘multilevel surgery’. Multilevel surgery
effective on its own for children with
is of most benefit to children who walk
hip problems who are non-ambulant.
independently or with the assistance of
However, the earlier hip displacement
crutches. The best age is usually 6–10
is detected, the more options are
years old although it can occasionally
available and the better the outcome
be helpful for older or younger children.
(hence the importance of regular
X-rays). Regular hip surveillance The aims of surgery are to decrease
is an essential part of overall hip deformities and to improve both the
management so that the right appearance and efficiency of walking.
treatment can be offered at the Success depends on an accurate
right time. For the majority of children assessment of the walking problems,
surgery to keep the hips in joint, which is done in the gait laboratory.
or to put the hips back in joint, is
A carefully planned intensive
preferable to leaving the child with
rehabilitation physiotherapy program,
a dislocated hip. Recent research
which can last for up to a year, is
shows that more than 90% of hip
required to maximise the benefits from
dislocations are painful and there is no
this surgery.
effective treatment for this condition.
7. Plastic surgery: Tendon transfers and intranasal or buccal midazolam, rectal
releases can occasionally improve diazepam, oral clonazepam or clobazam.
appearance or function in the upper limb.
You should consider having a written
What treatments are epilepsy management plan for your child.
The Epilepsy Foundation of Victoria
available for the associated have plans on their website and can also
medical problems? assist with development of individual
1. Epilepsy: Our knowledge of epilepsy plans. Visit www.epinet.org.au/
has increased substantially in the past The four most commonly used
few years. There are many types of anticonvulsants which treat epilepsy are:
seizures and epilepsy, including in
children with cerebral palsy. Some •S
 odium valproate (‘Epilim’, ‘Valpro’).
types of epilepsy are a direct Used for various types of focal and
consequence of the underlying brain generalised seizures, including
malformation or injury and will persist absences, myoclonic seizures and
throughout life. Other types of epilepsy tonic-clonic seizures. Potential side
are not directly related to a child’s effects include nausea, abdominal
cerebral palsy, and the seizures may be discomfort, weight gain, hair loss and
limited to infancy or early childhood. bruising. Liver damage and bleeding
19
Some seizures and associated EEG problems have been reported but are
(electrical brain wave) disturbances are extremely rare.
impair a child’s development, but others •C
 arbamazepine (‘Tegretol’,’Teril’).
do not. Specialist neurological input is Mainly used for focal seizures. Potential
often necessary to determine the type side effects include nausea, loss of
of epilepsy, its potential impact on a appetite, drowsiness and allergic skin
child, the prognosis and the treatment. rash. If the drug is commenced too
Medication is often prescribed following rapidly, initial drowsiness may occur
diagnosis of the type of seizures and then subside. A controlled release
their cause. Doctors prescribe tablet preparation is preferable for
medications to provide good seizure those children able to swallow tablets.
control with few or no side effects.
• L amotrigine (‘Lamictal’ and other
Medications taken on a daily basis are
generics). Used for focal and
to prevent seizures or reduce their
generalised seizures, often as ‘add on’
frequency, duration and severity.
to sodium valproate. It is well tolerated
Medications are sometimes prescribed
and may cause an increase in
to terminate prolonged seizures or
alertness. The main unwanted effect
manage seizure clusters, for example,
is an allergic skin rash which may
 occur in up to 5% of children, times a day but is very well tolerated.
especially if the drug is introduced too It can exacerbate some seizures.
quickly. If a skin rash develops during
• Oxcarbazepine (‘Trileptal’). This drug
introduction, the drug should be
has a similar profile to carbamazepine
ceased and your doctor contacted.
but is often better tolerated.
Sleep disturbance can occur in some
children, such that it is often given •C
 lonazepam (‘Rivotril’, ‘Paxam’) and
once a day in the morning. Clobazam (‘Frisium’). These drugs are
often used as add-ons or to manage
• L evetiracetam (‘Keppra’ and other
seizure clusters. They can cause
generics). Used for focal seizures.
irritability, drowsiness, disruptive
Generally well tolerated but can cause
behaviour. They can also worsen
irritability, mood disturbance and
drooling, especially clonazepam.
behavior problems.
For more detailed information on
There are a number of other
anticonvulsant medication, visit
anticonvulsants that are used in
www.rch.org.au/cep/treatments
specific situations or after other
drugs have failed. These include: If anticonvulsant medications are
insufficient to control a child’s epilepsy,
•V
 igabatrin (‘Sabril’). This drug is
20 and the seizures are significantly
used almost exclusively to treat
problematic, other treatments might be
infantile spasms, for which it is very
considered, for example, the ketogenic
effective. Potential side effects include
diet, vagus nerve stimulation or surgery.
drowsiness, irritability and agitation.
It has potential detrimental effects 2. Gastro-oesophageal reflux (GOR)
on peripheral vision and therefore is more common in children with cerebral
monitoring by an ophthalmologist palsy. GOR may result in regurgitation,
is necessary. inflammation of the oesophagus
(oesophagitis), difficulty swallowing
•T
 opiramate (‘Topamax’). This drug
(dysphagia), and occasionally,
is a very effective drug but side effects
aspiration. Conservative measures
are not uncommon, including appetite
may help reduce GOR. These include:
suppression, weight loss, kidney
stones and effects on speech, •p
 ropping the infant or child upright
behaviour and temperature regulation. after a meal
•G
 abapentin (‘Neurontin’). This drug • t hickening feeds
is used more commonly for pain • s lowing the rate of feeding
treatment than for seizure management (especially liquid feeds).
these days. It needs to be taken three
If conservative measures fail, medications Botulinum toxin injections into the
may be suggested. These include: salivary glands reduce salivary flow, but
repeated administration is required as the
• anti-acid medications such as ranitidine,
benefits only persist for 6–12 months.
omeprazole and lansoprazole. These
will reduce the acidity of the stomach For older children with persistent dribbling
and limit any damage produced by problems, surgical treatment can be
acid reflux. They are unlikely to reduce offered. The plastic surgeon redirects the
the amount of reflux. submandibular ducts and removes the
sublingual glands. This operation usually
• prokinetic agents such as domperidone.
reduces drooling but does not lead to
These are designed to reduce the
an unduly dry mouth. It is important
amount of reflux but are not always
that children undergoing this procedure
effective.
have regular dental follow up as there
Surgery to prevent reflux is occasionally is an increased risk of dental cavities.
necessary when medications have failed
4. Constipation: Children with cerebral
to control the problem. The surgical
palsy often have problems with
procedure is called a fundoplication.
constipation. A high fibre diet and
3. Saliva control: The speech increased fluid intake can help with this
pathologist plays a central role and can problem. This may not be easily 21
provide strategies to improve dribbling achieved in some children with cerebral
problems. When these strategies are palsy. Careful use of laxatives is
not effective, medication is occasionally preferable to severe constipation.
used, particularly in children over the
5. Nutrition: A dietitian can provide
age of 3–4 years. These medications
useful advice about adequate nutrition.
are as follows:
Excessive weight gain can be very
• Benzhexol hydrochloride disadvantageous for children learning
(‘Artane’) reduces salivary secretions. to walk. Undernutrition and failure to
Occasionally irritability may occur. make adequate weight gains may be
Blurring of vision, constipation and related to feeding difficulties. In a small
difficulty with urination are also proportion of children, the use of tube
potential side effects. feeding can be helpful.
•G
 lycopyrrolate (‘Robinul’) is similar
to benzhexol hydrochloride but seems
to produce fewer side effects. It is not
widely available in Australia.
 What therapies are available used approaches by therapists in
Victoria are listed below.
to assist my child?
Therapy is often incorporated in an 1. Neuro-developmental therapy
early intervention program which (NDT/Bobath) was founded in the
addresses not only the movement 1950s by Dr and Mrs Bobath who
problems but aims to optimise the developed a holistic and functional
child’s progress in all areas of approach to the treatment of
development. The most commonly children with cerebral palsy.

22
Today, NDT/Bobath-trained therapists 3. Modified constraint induced
work as a team with the child and movement therapy, often abbreviated
family, with the focus on identifying the to ‘mCIMT’ is a therapy for children
everyday functional areas that a child with hemiplegic cerebral palsy that
has difficulty with, analysing why there aims to increase the child’s use of their
are difficulties and then planning a hemiplegic arm and hand. This therapy
variety of intervention strategies to approach has developed from studies of
achieve the desired functional outcome. the effects of constraining the non-
The intervention strategies are affected arm and hand of adults
individualised for each child and may following stroke to ‘force’ the use of
include active guidance to help learn a their hemiplegic arm and hand.
new skill as well as how to practice mCIMT involves constraining a child’s
tasks in everyday settings. NDT/Bobath unaffected hand and/or arm for a
helps parents and carers in practical period of time, usually in a modified
ways on how to assist their child’s daily glove or mitt, while they receive
functioning in the areas of mobility, intensive structured training or
self-care, play, communication, encouragement to use their affected
eating and drinking. hand and arm in play activities.
2. Programs based on the principles 4. Goal-directed training involves the
23
of conductive education: Conductive child and/or family identifying specific
education is a system developed in tasks that the child may need to, want
Hungary by Dr Andras Peto for to or have to do at home, school or in
educating children and adults with their leisure. The approach developed
movement disorders. Peto recognised from our understanding of how children
the importance of meaningful activity learn motor skills. The therapist works
and social interaction to stimulate the with the child and family to identify
development of movement and the specific goals or tasks and to assess the
possible effects of movement child’s performance. The therapist may
challenges on all aspects of a child’s structure aspects of the task or
development. Conductive education environment to optimise the child’s
provides an integrated group program performance. Skills required by the child
where children and their carers/parents are identified and developed. Repeated
learn to develop skills in all areas of life, task practice is an important part of the
for example, daily living, physical, approach and requires the child and
social, emotional, cognitive and family to be active partners in the
communication skills. There are some therapy process.
programs that apply the principles of
conductive education in Victoria.
 What do parents need? 3. Information about services that can
help with the care and wellbeing of the
The impact on parents of having a child and parent and assistance in
child with any sort of difficulty can gaining access to them at the time they
never be underestimated. Parents may are needed. Sometimes information can
experience emotions such as anger, be provided by one of the disability
grief, a sense of disbelief and feelings support groups or organisations such as
of isolation. These emotions are often the Cerebral Palsy Support Network
very intense at the time of diagnosis (see page 37).
and may recur over time. 4. Information and skills to help them
Children with severe cerebral palsy may assist their child in the best possible way.
need a lot of assistance with daily living 5. Having a break: Time off from
skills such as eating, bathing and dressing, childcare is important for most parents.
placing enormous stress on the family. When the child’s daily needs place
There are a large number of hidden extra demands on time and energy this
financial costs. These include visits to is even more important. A break
doctors and other professionals, special enables families to have a rest and
equipment, maybe extra nappies and to spend time doing other things.
24 extra childcare.
All parents will have their own What shall I tell my friends
individual needs. However, for most and relatives?
parents their needs will include: It is sometimes difficult to know what to
1. Having their questions answered: tell your relatives and friends. Each family
It is sometimes helpful if parents write will manage this differently and at varying
down the questions they want answered times. It is your personal choice and you
when they see someone to discuss their should feel able to do this in your own
child’s needs. time when you are ready. A simple
explanation is often all that is required:
2. Support in understanding the that your child has difficulty in controlling
nature of their child’s condition: his muscles, and that his or her progress
This support will include the in some areas will be slower.
opportunity to share the feelings,
hopes, and fears they have for their
child. Support may be from other family
members, friends, parents with similar
experiences and professionals.
What about the rest of Hurtful comments or teasing can be a
problem for both the child with cerebral 25
the family? palsy, for brothers and sisters, and for
Sometimes it may seem impossible to the rest of the family. ‘Spastic’ has
fit all the activities suggested into the become an unfortunate term because
daily schedule. Parents may then feel it can be used in an unpleasant way.
guilty that they have insufficient time to However, to doctors and therapists,
carry out therapy programs with their the word simply means stiffness or
child. All parents face the same problem tightness of muscles. There are ways
and it is important to set aside time of coping with teasing, and books are
with your partner or other children as available about this subject.
well. The needs of brothers and sisters
must not be overlooked, and it is Sometimes the difficulties seem
understandable that sometimes they overwhelming. Remember that you are
might feel jealous or left out because of not alone and that help and people who
the extra attention given to the child understand are always available: other
with cerebral palsy. Sibling groups are parents, parent support groups, and all
organised by several organisations the people who work with your child.
where brothers and sisters of children
with disabilities, get together to share
experience and gain support.
 Who is available to the people who are involved in helping
children with cerebral palsy and can
help my child? make referrals to other specialists
as necessary.
A number of professionals work with
children with cerebral palsy and their 4. Paediatric rehabilitation specialist
families. Depending on needs, some assesses and treats children and young
children may be seen by all of these people with limitations in function or
people, others only by one or two. disability. The aim of Rehabilitation
Different professionals will be helpful at Medicine is to allow the child or young
various stages of the child’s development. person to function at the fullest level
they are capable of in physical, mental,
Some of the people involved are: social, educational and vocational
1. Parents: Parents are the most domains. Rehabilitation Medicine
important people of all as they know specialists may recommend various
most about their child. All children need interventions, including the involvement
the love and security parents provide. of allied health professionals. They may
In day to day family life parents will prescribe medications, recommend
incorporate many of the suggestions adaptive devices or modifications to the
made by therapists and teachers into environment of the child or young
26
the daily routine. person. Paediatric rehabilitation
specialists are trained in the
2. Family doctor/general practitioner: administration of Botulinum toxin
Children with cerebral palsy have the injections for the management of
same health problems as other children increased muscle tone.
of a similar age. They are just as likely to
develop coughs and colds and other 5. Other medical specialists may at
common childhood illnesses. The family times be helpful including paediatric
doctor will help with these problems. neurologists, gastroenterologists,
General practitioners may also know endocrinologists, respiratory physicians
the whole family and be able to provide and orthopaedic surgeons.
support and encouragement. 6. Nurses provide assistance in various
3. Paediatrician: This is the doctor ways. Maternal and child health nurses
who specialises in children’s health monitor children’s early development
and development. Paediatricians can and provide support to parents. If your
provide advice regarding the special infant needs more monitoring than is
health conditions that occur in children typical, your maternal and child health
with cerebral palsy, such as epilepsy. nurse may refer you to an enhanced
The paediatrician works closely with all maternal and child health service.
 7. Paediatric therapists are skilled in
working with children with cerebral
palsy and provide assessment, advice
and/or treatment. Depending on the
setting, they may work with children
and their parents either individually or in
small groups. Those most commonly
assisting children with cerebral palsy are
physiotherapists, occupational therapists,
and speech pathologists. Not every child
needs to have assistance from all of
these people. For children with complex
needs, the therapists often work together
in planning or providing treatment.
Therapists aim to teach parents how
best to help their children learn to move
and acquire all the practical skills needed
for living and ensure optimal functioning.
All young children learn through play
27
and this principle is used when advising
School nurses, who are in some parents about the best way to encourage
mainstream and special schools, are able their child’s development.
to address everyday health issues such
as nutrition, immunisations, bowel and The special areas in which each
bladder management. You may be therapist works are as follows:
referred to other specialty nurses, such a. The physiotherapist advises
as continence nurses, stomal nurses, parents on ways to encourage children
epilepsy nurses or gastrointestinal to move, and to develop skills such as
nurses who have specific expertise sitting, crawling and walking. Practical
in an area. advice on ways to lift and carry
Following any procedures, such as children, and on positioning children
orthopaedic or gastrointestinal surgery for play and eating, can also be given.
where ongoing medical or nursing The physiotherapist may also give
interventions are required, arrangements advice on suitable footwear, splints to
can be made for nurses to visit at home improve children’s foot posture and gait,
to support you. Nurses may also be and equipment such as supportive
helpful in liaising with and obtaining chairs and standing and walking frames.
appropriate health care services.
28
b. The occupational therapist may need to learn an additional
specialises in hand skills and activities or alternative means of communicating,
of daily living, and advises about play such as using hand signs, a
and appropriate toys. Occupational communication book with words
therapists also suggest easier ways of or pictures or an electronic
bathing, feeding, dressing and toileting. communication device. Children with
As children become older, occupational cerebral palsy may have difficulties with
therapists help them to become more eating and drinking due to poor control
independent in these self-care tasks. of the muscles of the mouth, face and
They also assist children to acquire throat. They may dribble excessively at
skills needed for kindergarten and times. The speech pathologist can help
school (such as handwriting). with these problems.
c. The speech pathologist sees 8. The social worker can provide
children with difficulty talking, information about services and
understanding speech and swallowing entitlements and can help find
difficulties. Advice is given to families appropriate early childhood intervention
on how to encourage speech and programs, kindergartens and schools.
language development. Some children The social worker can also provide
information for parents who wish to 11. The orthotist works closely with
meet others with similar experiences. the physiotherapist and doctors to
Most importantly, social workers can determine appropriate bracing for
provide counselling and advocacy those children that need it. The orthotist
support. You can talk to social workers designs and makes braces and is
about your child and discuss any responsible for all ongoing alterations
problems or worries that you and and adjustments to improve fit and
your family are experiencing. function of the brace as the child grows.
The orthotist will provide information
9. The psychologist is concerned with on suitable footwear types and may
progress in learning and emotional and also be involved in the modification of
social development. The psychologist some equipment.
may be available to help if there is
concern about a child’s emotional 12. Dentist: Dental care is very
well-being and behaviour or difficulties important for your child. Regular
within the family. check-ups and help with tooth brushing
and preventing dental decay can be
10. Special education teachers work in sought from either your local family
a variety of settings, including family dentist or a public community dental
homes, early intervention programs, clinic. Alternatively, you can ask your
preschool settings (kindergarten and paediatrician to refer you to the 29
child care centres), playgroups and department of Dentistry at The Royal
special schools. Children’s Hospital (RCH). Eligibility
Special education teachers provide criteria for acceptance are listed at:
support to families by: www.rch.org.au/dentistry/about_us/
Eligibility_criteria  The department of
• helping families understand more Dentistry at the RCH will be able to
about their child’s disability and the provide your child with ongoing regular
impact it may have on learning and dental care until 18 years of age. Your
development child will then be transitioned to an
• establishing individual therapy/ adult special needs service for future
education program plans dental care.

• supporting the child and staff in 13. The audiologist tests children’s
the child’s participation in local hearing to make sure they can hear well
kindergarten and child care programs enough to learn to speak and understand
language. Some children with physical
• assisting with the child’s disabilities, and very young infants,
successful transition to school cannot respond consistently to sound.
and post-school options. They sometimes cannot show us how
 much they hear. Audiologists have They will communicate your child’s
special tests to measure the hearing of needs to other professionals who can
such children. If deafness is detected the provide advice or work directly with
audiologist works with the ear specialist your child when necessary.
(otolaryngologist) to improve children’s
Your ECI professional will be someone
hearing. If that is not possible the
you trust, who is skilled and wants
audiologist will arrange for hearing aids to
to work with you to learn what works
be fitted and advise parents in their use.
for you and your family. They will
14. The ophthalmologist assesses help you to think about what they
vision, manages eye disorders and can do and what is possible for you
prescribes glasses and other treatments and other family members to do to
that may be necessary for children with help your child.
cerebral palsy.
It is important to work with an ECI
working with early childhood professional with whom you feel
intervention professionals comfortable. Some ECI professionals
will assist you with a wide range of
Early Childhood Intervention (ECI)
activities such as linking into other
professionals are qualified in specialist
services, setting goals for your child
areas such as early special education,
30 and family and establishing and
health, occupational therapy,
refining routines. Home, childcare or
physiotherapy, psychology and
kindergarten-based sessions are
speech pathology.
especially valuable for linking therapy
ECI professionals work from a child strategies to your child’s needs in daily
and family-centred approach where an life. It is useful to check whether your
equal partnership is created between therapist or service can offer sessions
parents and ECI professionals to help in different settings.
each family build on its strengths and
develop new skills. Sometimes ECI professionals may
have experience with particular
In state funded ECIS, as much as developmental concerns — it can be
possible you will work with one key worth asking if they have experience
worker who supports your family, to with children with similar needs to
reduce the need for you to tell your your own child.
story over and over. Your key worker
will assist you to identify which When working with ECI professionals
therapies and supports may be helpful it is good to trust your instincts.
to assist your child to learn and develop. If necessary ask a lot of questions.
Communicate your needs clearly.
If you haven’t experienced the support Where will my child go
you’d hoped for and the approach
doesn’t feel right for your family, you
to school?
can always change to a different ECI Choosing the most appropriate school
professional, key worker and service. can take considerable time and planning
when your child has cerebral palsy.
All of these professionals may assist
families to develop advocacy skills. There are several options available.
However, parents may choose their All children are entitled to an education
own advocate or support person to through their local primary school.
accompany them to meetings and This entitlement is known as inclusion,
appointments to provide support. where the special resources for the
child are made available to the local
school. A small number of schools
What is advocacy? provide more specialised programs
Some families who have a child with for children with special needs.
cerebral palsy feel they need someone Workers who know your child well,
to help them gain access to services or such as your therapists, pre-school
insist on their own or their child’s rights. teacher or paediatrician, will be able to
This service is known as advocacy. provide information and support during
An advocate works alongside the the process of choosing a school. 31
family, often attending important The final decision should be yours.
meetings with them and sometimes
Schools may request assessment
speaking on their behalf. People
reports to establish your child’s needs
involved in the care of the child,
and your doctor or therapist can ensure
a case manager, a friend of the family,
these are performed and made
or a special ‘advocate’ may be used.
available to you to provide to the school.
Sometimes an advocate can be
provided by one of the disability Regional offices of the Department
support groups or organisations of Education and Training provide
such as the Association for Children information and resources about
with a Disability. An advocate also schooling for children with cerebral
helps the family or the person with a palsy. There are several publications
disability develop the skills to speak that may be useful for families including
confidently for themselves. the Program for Students with Disabilities,
which is available from the Department
of Education and Training website
www.education.vic.gov.au
 What about different What are the current trends
approaches to treatment? in the provision of services?
Every child is an individual. Just because Children with cerebral palsy benefit
a particular child is receiving one type of from the same activities as other
therapy does not mean that another children. Hence a child may attend
child needs the same therapy. a local playgroup or childcare centre,
Therapists and paediatricians keep and progress on to a local preschool
up-to-date with the latest treatment and school. It is important the child
approaches, and are happy to discuss receives the extra assistance that may
different approaches with parents. be required.
There are many non-mainstream (or Specialised services are often available
‘alternative’) treatments available and within local communities. Staff may
parents should always feel free to work with children and families at
enquire about them, both from the home and later in playgroups, childcare
practitioners of these therapies and from centres and kindergartens.
the child’s paediatrician and paediatric
Some children may benefit from
therapists. Sometimes great claims are
attendance at a specialised program.
made for alternative approaches.
32 Specialised programs are provided by
These claims are not always justified. a variety of agencies, and may include
Every parent and professional wants the early childhood intervention programs,
best outcome for children with cerebral preschools and schools. It is important
palsy, so families can be reassured that that parents are aware of all
any new treatment that is of value will available programs.
be assessed and incorporated in to
mainstream practice. There is currently
no evidence that suggests alternative
methods are better than conventional
therapies and many of these alternative
methods are very expensive. It is
important that both parents and
professionals keep an open mind about
new approaches but also be prepared to
critically examine their claims.
 33

Which organisations education, parent-to-parent contact,

and assistance to the childcare centre or
are helpful? kindergarten. Details of all local agencies
are available through the websites of
Children with cerebral palsy can use Early Childhood Intervention Australia
any of the regular early childhood and Victoria Chapter (www.eciavic.org.au)
children’s services such as maternal and the Association for Children with a
and child health centres, playgroups, Disability (www.acd.org.au), which are
child care centres, family day care, further detailed later in this booklet.
kindergartens and schools. Many of the same organisations
There are also a large number of continue to provide assistance to
Government and non-Government school-age children, although some
organisations that can provide additional are restricted to the preschool (early
help. Early intervention and school childhood intervention) years. On
services may include special education, the next page is a list of some of the
therapies, family support, parent organisations that are helpful. Some do
charge a fee so please enquire about this.
 early childhood department of health and
intervention services human services (dhhs)
Early Childhood Intervention Services Children eligible to receive services from
(ECIS) support children with a disability Disability Services, the Department of
or developmental delay from birth to Health and Human Services have a
school entry and their families. ECIS disability defined as sensory, physical
provides special education, therapy, or neurological impairment or acquired
counselling, service planning and brain injury which:
coordination, assistance and support to • is permanent or likely to be permanent
access services such as kindergarten
and child care. Services are tailored to • c auses substantially reduced
meet the individual needs of the child capacity in at least one of the areas
and focused on supporting the child in of self-care, self-management
their natural environments and in their or communication, and
everyday experiences and activities. • r equires significant ongoing or
These services are funded through the long-term support.
Department of Education and Training
Case management, respite care and
(DET) and provided by Specialist
Children’s services teams and Early behaviour support may be available.
34 Childhood Intervention agencies. Disability intake and response service:
The overall aim of these services is to Telephone: 1800 783 783
provide parents and families with the http://dhhs.vic.gov.au/
knowledge, skills and support to meet www.dhs.vic.gov.au/home
the needs of their child and to optimise
the child’s development and ability to
participate in family and community life.
All services are provided using a
family-centred approach, recognising
the importance of working in
partnership with the family.
For ECIS central intake:
Telephone: 1300 662 655 metropolitan
1300 662 655 rural
www.education.vic.gov.au/childhood/
parents/needs/Pages/ecis.aspx
hospitals yooralla
Limited therapy services are provided Yooralla provides specialised services for
through some hospitals, particularly children with disability including cerebral
The Royal Children’s Hospital and the palsy, within their home, community
Monash Medical Centre, but also and school from birth through primary
through a number of other metropolitan and secondary years. This may include
and rural hospitals. Hospitals may also therapy, assistance with equipment,
assist families of children with cerebral home modifications assessments and
palsy through provision of medical and support with funding applications as
surgical services at various clinics, and well as recreation activities.
through other departments such
Telephone: (03) 9831 5632
as social work and psychology.
Developmental Medicine at The Royal www.children@yooralla.com.au
Children’s Hospital provides a range of
education and training resources for
parents, carers and families which
can be viewed from our website.
www.rch.org.au/devmed
35
 scope cerebral palsy
Provides therapy, information, training education centre
and education, resources, equipment, This Centre provides specialised
respite and recreational programs for early childhood intervention services to
children with cerebral palsy. families who have a child with cerebral
palsy or similar motor disability.
Telephone: 1300 472 673
The services are provided by
www.scopevic.org.au physiotherapists, occupational
therapists and speech pathologists.
villa maria The services include family support,
Villa Maria provides therapy, educational, educational group programs, advice
respite and recreational programs for on equipment, individual therapy, and
children with cerebral palsy and with training and support into home, early
other physical disabilities. childhood settings and local schools.
Telephone: (03) 9854 5111 Education and training opportunities
or 1800 036 377 for professionals, parents and the
community are listed on the website.
The Centre is located in Glen Waverley.

36 Telephone: (03) 9560 0700

www.cpec.org.au
kids plus foundation ACD also advocates for improvements
This organisation is situated in to government policies and works
Geelong and serves the Barwon region. to increase community awareness
The purpose of Kids Plus is to deliver about the needs of families of children
specialist multidisciplinary therapy with a disability, including the need
programs for babies, children and for more appropriate toilet facilities
young people with neurodevelopmental for children and adults who require
disabilities, including cerebral palsy with hoists and larger change tables (see
a focus on supporting children and their www.changingplaces.org.au). Members
families maximise their participation receive the quarterly Notice Board
and engagement in daily life. magazine which includes family stories
and updates on services, supports
Telephone: (03) 5223 1475 and policy.
www.kidsplus.org.au Membership cost:
association for children $16.50 for families or $55 for
with a disability (acd) organisations and professionals.

ACD is a not-for-profit organisation Telephone: (03) 9818 2000

that provides free information, support or 1800 654 013 (rural)
and advocacy to families who have a Email: mail@acd.org.au 37
child with any type of disability or www.acd.org.au
developmental delay in Victoria.
Services include free telephone support cerebral palsy
about any disability related issue, support network
including aids and equipment, The Cerebral Palsy Support Network
education, respite, and recreation. (CPSN) is a not-for-profit organisation
Our ACD support team are parents providing information and support
of children with a disability and so services to people living with cerebral
they understand issues from a family palsy and their families. It helps empower
perspective. Information resources individuals to lead more independent
available to families include the booklets lives and provides support in a variety
Helping You and Your Family, Through the of ways to both individuals and families.
Maze, Growing Together, Positive Education The CPSN provides a wide range of
Planning, Transition to Secondary School supports including social, health and
and Learning to Lead. Online copies recreational programs, fitness
are available through the website programs, camps, website resources,
www.acd.org.au  information library, information
seminars and workshops, carer
 support groups innovative choices preschool field officers
respite service and a care centre. Preschool field officers support
The care centre includes services such teachers to assist children in
as advocacy, case coordination, intake, kindergarten and provide advice to
access and referral services, telephone families immediately prior to and
support and information and face to during the kindergarten year/s.
face consultation. Membership is free
for individuals with cerebal palsy, www.education.vic.gov.au/childhood/
as well as their families. parents

Telephone: (03) 9478 1001 action on disability within

Email: cpsn@cpsn.org.au
ethnic communities inc. (adec)
ADEC is a state-wide organisation that
www.cpsn.org.au
strives to empower people with a
noah’s ark toy library disability from non-English speaking
and family resource backgrounds, their carers, and families
Noah’s Ark is one service that provides to fully participate as members of the
Early Childhood Intervention Services Victorian community.
(ECIS) to families of children from birth Telephone: (03) 9480 1666
38 to school age with a developmental Toll free number: 1800 626 078
delay or disability. They can also loan
specialist equipment and toys. www.adec.org.au

Telephone: (03) 8823 8600 free kinder association

multicultural resource
support agencies Provides support to early childhood
Support agencies help support services for children from culturally
childcare, family day care and and linguistically diverse backgrounds
out of school hours care services attending children’s services.
that may require extra support to
include children with additional needs. Telephone: (03) 9428 4471
Supports must be requested by the www.fka.com.au
children’s service staff.
carers victoria
www.dss.gov.au/our-responsibilities/ There are times when you may just
families-and-children/programmes- need a break. The services which
services/early-childhood-child-care/ enable this break are broadly referred
inclusion-and-professional-support- to as ‘respite’ and can include in-home
program help provided by a support worker,
recreation-based activities (like camps Therapists must be chosen from the
and excursions) and assistance with Government approved authorised
special equipment. The services may provider panel.
also include ‘residential respite’ where
Children must be under six years old
the person you care for has a short-term
to be registered, and families will have
stay at a facility which offers an intimate
until the child’s seventh birthday to use
home-like setting with tailored activities.
the early intervention funding.
Every care situation is different. What
works for one family may not work for Carers Victoria supports the
another. Respite can provide a much registration and information services
needed break from the caring routine — for families wanting to access the
time to get other things done, to have Better Start program.
fun with the family, or simply to relax
and recharge your batteries. Telephone: 1800 242 636
www.betterstart.net.au
Telephone: 1800 242 636
parent support
better start
This may be provided by consumer
Better Start is an Australian Government organisations such as:
initiative funded by the Department of
Social Services (DSS) that supports •A
 ssociation for Children with a 39
eligible children and their families by Disability (see page 37).
giving them access to early intervention Telephone: (03) 9818 2000
funding and services delivered by 1800 654 013 (rural)
registered service providers.
www.acd.org.au
Children who are eligible for the
program can access funding of up to •C
 erebral Palsy Support Network
$12,000 (to a maximum of $6,000 (see page 37)
per financial year) for a range of early •R
 egional parent support programs.
intervention services, including:
Telephone Association for Children with
• speech therapy
a Disability for further details.
•o  ccupational therapy
•p  sychology Telephone: (03) 9818 2000
or 1800 654 013 (rural)
• audiology
•p  hysiotherapy
• orthoptics
• e quipment that is essential to the
child’s therapy when ordered by an
approved provider (up to 35%).
 flexible support packages Equipment and aids
Flexible support packages provide
early preventative supports for people the state-wide equipment
with a disability and their families. program
Flexible support packages include the The State-wide Equipment Program
provision of information, planning and (SWEP) provides people who have a
low-level, short-term disability supports permanent or long-term disability with
as well as assistance to access subsidised aids, equipment, oxygen,
community and mainstream supports. continence and vehicle and home
Telephone: 1800 783 783 modifications. SWEP aims to enhance
the independence and safety of people
with a disability in their own home and
or facilitate their participation in the
community and support families and
carers. SWEP is funded by the
Department of Human Services.

40
SWEP incorporates the following • ComTEC provides resources and
programs: Aids and Equipment advice in the use of specialised
Program (A&EP), Supported technology by people with disabilities.
Accommodation Equipment Assistance ComTEC therapists provide
Scheme (SAEAS), Domiciliary Oxygen individualised assessment of needs.
Program (DOP), Continence Aids (CA), ComTEC also has an enquiry service;
Vehicle Modification Scheme (VMSS) an outreach service and an electronic
and Top-Up Fund for Children (TFC). equipment library (hire fees apply).
To be eligible, young people need to
The Electronic Communication Devices
have a long-term disability. Clients must
Scheme is co-located with these services
be permanent Victorian residents or
at the Brooklyn site. The Electronic
holder of a Permanent Protection Visa
Communications Devices Scheme is
or an asylum seeker. Assessment and
funded by the Department of Human
prescription is required by a SWEP
Services, to provide funding for the
registered Allied Health Professional
purchase of communication devices,
or Respiratory Physician. Certification
voice output software and apps,
of disability is confirmed by the
mounting systems and specialised
appropriately qualified medical
switches to people of all ages with
practitioner.
complex communication needs.
http://swep.bhs.org.au 41
Devices, repairs, training and follow up
are provided to residents of Victoria
yooralla’s equipment services
with a permanent disability resulting in
Yooralla’s Equipment Services have a severe communication impairment.
three programs for children, people The ECD program is a subsidy scheme
with disabilities and people who want which has ceiling limits for equipment
to maintain independence as they purchases, however many of the
live longer: requests do fall under these limits.
• The Independent Living Centre Telephone: (03) 9362 6111
provides advice, assessment and (03) 9314 9001
information on daily living aids 1300 885 886
and equipment.
Email: ilc@yooralla.com.au
• The Equipment Library houses www.ilcaustralia.org.au
assorted equipment and aids, and
complements the Independent Living
Centre with a short-term loan service.
 scope go kids solve disability solutions
Scope Go Kids is a specialised Solve Disability Solutions (formerly
mobility assessment and intervention TADVIC) custom makes and modifies
service. Scope Community and equipment for people with disabilities
Inclusion Resource Center provides when there is no commercially available
non-electronic communication aids product or service that will meet their
for children, telephone advice for needs. Health professional project
parents, teachers and other in coordinators work with volunteers who
augmentative and alternative have a range of technical abilities to
communication, disability education assist the client to solve equipment
for schools, services and organisations, related issues. The service is funded by
and workshops and courses in a range the state government and charges
of disability-related topics. apply for reimbursement of volunteer
for the cost of materials and traveling
equipment recycling expenses incurred. Charges for service
network inc costs for NDIA participants (see below)
Equipment Recycling Network Inc are also included in their quotations.
runs a website where clients can place
Telephone: ( 03) 9853 8655
an advertisement for their ‘Disability
42 or 1300 663 243
Aids’ that they no longer require,
including wheelchairs, bedding, chairs Email: info@solve.org.au
and scooters. Desktop PCs are also www.solve.org.au
supplied for people with a disability. For
children, a support letter from their
paediatrician is required, stating that Continence services/support
the child in question has a disability and continence aids payments
would benefit from owning their own scheme
PC. The cost is $30 for a PC with Continence Aids Payments Scheme
Windows 7 and Office 2010. (CAPS) is an Australian Government
www.erni.asn.au Scheme that provides payment to assist
www.erni.asn.au/sale-of-computers- eligible people who have permanent
for-people-with-disabilities.htm and severe incontinence to meet some
of the cost of their continence products.
Free Help Line: 1800 330 066
www.continence.org.au/pages/
national-continence-helpline.html
43
 continence support service for The allowance helps with transport
children with a disability (css) costs if you cannot use public transport
Advice for toilet training strategies and without substantial assistance, either
products from local continence nurse permanently or for an extended period.
and provision of disposable product. •A
 ssistance for Isolated Children
Victorian Continence Resource Centre Scheme can help parents and carers
Telephone: (03) 9816 8266 of school aged students who cannot
go to state school on a daily basis
statewide equipment because they have a disability or have
program (swep) special health needs.
For provision of catheters other •S
 pecial Disability Trust helps
drainage systems reusable products, immediate family members of people
that is, bed protection, chair protectors with severe disabilities make a private
and underwear. financial provision for their future care
Telephone: 1300 747 937 and accommodation needs.
Centrelink telephone: 13 27 17
Financial assistance For more information:
44 The Commonwealth Department of www.humanservices.gov.au/customer/
Health and Human services provide subjects/payments-for-people-living-
payments and services to help families with-illness-or-disability
and people who have a disability. www.humanservices.gov.au/customer/
•C
 arer Payment and Carer Allowance subjects/caring-for-someone-with-an-
can provide financial assistance if you illness-or-disability
provide care every day to someone the companion card
with a disability
This is for people with a lifelong disability
• Carer Supplement is an annual lump who require a companion to enable
sum payment to help you with the costs them to access activities and venues.
of caring for a person with a disability. The cardholder’s companion may be
•C
 hild Disability Assistance Payment admitted to public venues at no cost.
is an annual payment that helps you Telephone: 1800 650 611
with the costs of caring for a child
with a disability.
•M
 obility Allowance helps you to
participate in approved activities when
you have a disability, illness or injury.
the national disability Looking after yourself
insurance scheme and your family
The National Disability Insurance
Scheme (NDIS) is a new way for people counselling
with a disability and their families to gain All families are different and will
support to link into community services. have competing demands, for example,
The NDIS will ensure that people with the number of children in their family
disability are given every opportunity to and possible financial impacts on family
make their own decisions and exercise living. This could mean that at different
choice and control. It is recognised that times in their lives parents and carers
the role of families and carers is often may need or seek the assistance of
essential in supporting people with others either informally with family,
disability to realise these goals and friends or support group members
will include them in discussions or more formal methods such
about supports. The NDIS will provide as counselling.
information, referral and linkage to ensure Assistance for counselling is
families and carers are able to access available through:
supports in the community to assist
them in their role. Where a permanent ACD
and significant disability exists, NDIS will www.acd.org.au 45
fund supports to achieve individual goals. CPSN
In Victoria, the Barwon region is used as www.cpsn.org.au
the trial site for the NDIS. Most disability-
specific, government-funded programs Regional Parent Support Coordinator
are transitioning to the NDIS. Roll-out can be located on your Regional
of the full scheme in Victoria, will Quick Guide: www.acd.org.au/regional-
commence progressively from July 2016. quick-guide
www.ndis.gov.au Other support and counselling options
To find out more and to see if you are listed on page 22 of ACD’s
are able to access assistance: publication Through the Maze
www.ndis.gov.au/my-access-checker http://acd.org.au/through-the-maze
or call ACD for a copy (free for families).
 national carer The University of Melbourne, has a
counselling program substantial cerebral palsy research
Provides free short-term counselling program, spread over the campus.
for parents and carers. Your GP or case The Victorian Cerebral Palsy Register,
manager can make a referral or you can managed by researchers from
contact the service yourself. the Developmental Disability and
Telephone: 1800 242 636 Rehabilitation research group at
Murdoch Childrens Research Institute,
www.carersvictoria.org.au collects basic information about people
mental health care plan with cerebral palsy born or living in
Victoria since 1970. The Register is
Anyone who has a mental health extremely important in enabling us
condition that lasts longer than six to determine how the incidence of
months and needs the care of several cerebral palsy has been changing
providers may benefit from a Mental over time in Victoria. It also allows
Health Care Plan. The plan explains the us to better understand any trends in
support given by each provider and is the type and severity of the movement
done in consultation with your doctor. disorder in cerebral palsy, and to
Medicare will cover some or all of the advance our knowledge of the
46 cost of care planning by a doctor and multitude of factors that appear to
may rebate some of the costs of increase the risk of cerebral palsy.
specialists or other health professionals.
Ask your doctor or mental health Telephone: (03) 9345 4808
professional for more information. Email: vic.cpregister@rch.org.au
www.betterhealth.vic.gov.au www.mcri.edu.au/research/projects/
victorian-cerebral-palsy-register
Is any research being In March 2006, Solve! At the RCH was
carried out? launched, an initiative of Developmental
In Australia and many other parts of the Medicine. The aim of Solve! At the RCH
world there is research into the causes is to research the causes and improve the
of cerebral palsy. Research is also being outcomes for children with disabilities.
carried out to help find the best www.rch.org.au/devmed
methods of management and
treatment. The Murdoch Childrens
Research Institute, with its partners,
The Royal Children’s Hospital and
In conclusion
• Focus on what your child can do and how his or her capabilities
can be developed to their maximum.

• Your child needs the same love, care and acceptance as all children.
However severe the cerebral palsy, your child is more like other
children than unlike them and obtains the same enjoyment from
play and pleasurable activity.

• Be optimistic about your child’s progress, yet be realistic when the
problems are severe (this is, of course, often a difficult balance
to achieve). 47
• Good cooperation and communication between parents
and professionals will help the child achieve independence.
The greatest achievement, however, is the development
of the child into a mature person able to adjust to life.

• Take care of yourself. Continue with activities you enjoy,

talk to someone who understands what you are going through
(join a parent support group), make time for regular exercise,
have healthy, regular meals, get enough rest and sleep. Look after
your back if you need to lift or transfer the person you are caring
for, make sure that you have regular and frequent breaks and
make time for yourself each day for relaxation.
 Helpful resources
publications
Finnie’s Handling the Young Child with Cerebral Palsy at Home.
Edited by Eva Bower, 4th Edition. 2008. Butterworth-Heinemann.

websites
Cerebral Palsy Support Network (CPSN)
The CPSN website provides a range of resources including an
information library and useful links. The site covers an extensive
range of topics including CP, education, advocacy services,
equipment, financial assistance, mobility, respite and much more.
www.cpsn.org.au

48 Cerebral Palsy Australia

www.cpaustralia.com.au

Ability Centre
www.abilitycentre.com.au

Cerebral Palsy Alliance

www.cerebralpalsy.org.au

Hemi-Kids
Information for children with hemiplegia
www.hemikids.org
 151025 Sept 2016
Developmental Medicine
The Royal Children’s Hospital Melbourne
50 Flemington Road Parkville
Victoria 3052 Australia
www.rch.org.au/devmed