Facts and figures - main disabilities of Novita clients
In 2003:
- there were an estimated 3,946,400 people in Australia with a disability—about 20% of the population
- 6.3% of the population (1,238,600 people) experienced limitations such that they always or sometimes needed assistance with activities of self-care, mobility and communication.
- 17.2 % of the Australian population (667,200 people) who have a disability are aged under 25 years.
- 66.7% of the Australian population (2,646,400 people) who have a disability are aged over 45 years.
Information obtained from the Australian Institute of Health and Welfare - read the full report:
Disability And Disability Services In Australia on the AIHW website (PDF - large file - 591Kb)
Amongst Australian children aged up to 14 years:
- about 1 in 12 children have a disability (this is 8.3% of all children or 317,900 children in Australia).
- about half of these children, 1 in 24, have a severe or profound disability that affects their ability to do day-to-day activities ( this is 4.3% of all children or 165,300 children).
- boys are more likely than girls to have a disability (10% chance for boys, compared with 6.5% chance for girls).
- boys are also more likely to have a severe or profound disability (5.4% chance for boys compared with 3.1% chance for girls).
- 87% of children with severe or profound disability also have Autism.
- 75% of children with severe or profound disability also have an intellectual impairment.
- an estimated 54,600 people are the main carers of children with a severe or profound disability and most (91%) of them were mothers.
- about 1 in 2 (48%) carers of children are reported to need more support - respite care and financial assistance are the greatest needs.
- almost all (97%) children aged 5–14 years with a disability are attending school - 89% of them in mainstream schools and 9% in special schools.
Information obtained from the Australian Institute of Health and Welfare - read the full report:
Disability Updates: Children With Disabilities on the AIHW website (PDF -266Kb)
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An acquired brain injury is an injury to the brain that has happened since birth. This can happen because of an accident, (such as a road accident, a fall or a diving accident), or various other incidents that result in an injury to the brain.
Acquired brain injury can happen to anyone at any age. People who have an acquired brain injury may experience a number of the following difficulties:
- Physical problems, such as:
- weakness on one side of the body (hemiplegia)
- balance problems.
- 'Hidden' problems, such as:
- short-term memory difficulties
- difficulty in controlling emotions
- greater difficulty in planning things that need to be done
- problems getting started on things
- getting things mixed up or confused
- having difficulty understanding words and how to solve problems.
The difficulties experienced depend on the type and extent of brain injury and this is different for each person - no two people with acquired brain injury will have exactly the same problems.
For more information about acquired brain injury
Disclaimer: General information only - you should consult with the relevant professional before applying it to a particular situation. See disclaimer details.
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Cerebral palsy
Cerebral palsy is the most common reason for a child to have a physical disability. It is a general term for a group of disabling conditions caused by injury to the brain in early life during the period of brain development. Cerebral palsy is a disorder of muscle control affecting posture and movement causing problems such as weakness, spasticity or difficulties with balance and coordination.
Cerebral palsy is not a progressive condition, but changes may occur, with age, due to variations during the child’s growth and development.
In addition to problems with movement, other problems may be present, such as intellectual disability, epilepsy, visual and hearing problems, speech disorders and eating difficulties.
Two children with cerebral palsy are born for every 1,000 live births. This has been the same for many years.
Injury to the brain occurs:
- mainly during pregnancy
- sometimes around the time of birth, for example when the baby is born prematurely
- sometimes after birth, but before the age of 2 years, due to a particular event such as meningitis or nearly drowning.
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Cerebral palsy is divided into the following types:
Hemiplegia
Involves spasticity and weakness of one side of the body. These children are usually late walking, but eventually walk independently. They may have more obvious involvement in the arm. A number of the children have intellectual delay and epilepsy is fairly common in this group.
Diplegia
Involves spasticity and weakness of the lower limbs, the upper limbs being less affected. This form often occurs when a baby is born early.
Quadriplegia
Involves spasticity and weakness of all four limbs. Many of these children have a number of other difficulties, for example, intellectual delay, epilepsy, vision and hearing problems, communication and eating difficulties.
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Ataxia
These children often have an abnormality of the part of the brain that controls balance (the cerebellum). Walking is difficult because of these balance problems. Co-ordination and fine motor skills, such as the way children use their hands to write and manipulate things, may be affected and in some cases speech is also affected.
Dyskinetic cerebral palsy (including athetosis and dystonia)
This type of cerebral palsy, affecting only a small proportion of children, affects the part of the brain that makes it possible for a person to produce smooth, controlled movements. The result is a tendency for uncontrolled, jerky movements, that in the most severe cases, can occur continuously. With training and practice, some degree of control is possible, but control is less when the person is tired or experiencing high levels of stress.
South Australian Cerebral Palsy Register
The Register, run by the Adelaide Women's and Children's Hospital, works together with Novita to maintain records of children with cerebral palsy born in South Australia. This makes it possible to get an accurate record of how many children have the condition, information useful in planning of services. The Register also conducts research into the causes of cerebral palsy and educates the community about the condition.
View the factsheet South Australian Cerebral Palsy Register (PDF - 41Kb)
View other websites providing information about cerebral palsy
View a video clip in which Dr Flett, a Rehabilitation Physician (formerly of Novita), provides an overview of cerebral palsy (this link loads a page that commences streaming of 8.5Mb MOV file of 2 minutes 23 seconds duration - a text description and transcript of the video is provided)
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Muscular dystrophy
The muscular dystrophies are a group of inherited conditions in which there is break down of muscle fibres, leading to gradually increasing weakness.
The following information is about the most common form, Duchenne muscular dystrophy, which occurs only in boys. More than one boy in the family may be affected. Female relatives may be ‘carriers’ of the condition. This means that while they do not ‘show’ the condition, they carry the condition in their genes and may pass it on to their children. In such cases, genetic counselling of families is very important.
The main features of Duchenne Muscular Dystrophy include:
- lateness in learning to walk - the boys do not have obvious problems until about three to six years of age, when they start to have problems with climbing stairs, getting up from the floor, have difficulty running and may have frequent falls - they walk with a ‘waddling gait’ because of leg muscle weakness and later will start walking on their toes
- increasing muscle weakness - walking gradually becomes more difficult and the boys are usually in a wheelchair by the early teens - they also become weaker in the arms and trunk muscles
- increase in body weight - many, but not all boys become quite overweight due to the lack of exercise resulting from natural movement
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intellectual disability - well known to occur for some children- weakness of breathing muscles - this tends to occur at later stages in the condition with chest infections becoming a frequent problem
- curving of the spine (scoliosis) - this is due to increasing weakness of the muscles that usually support the spine and may require surgery to correct this
- weakness of the heart muscle.
Treatment
- While there is no definitive treatment, corticosteroid treatment has been found to slow the progress of the muscle weakness, although side effects of the treatment may be a problem.
- Physiotherapy is their main need in the early stages. Later the occupational therapists become vital in providing assistance to ensure that the boys can live at home and go to school and that families obtain all the equipment currently available to help them, for example, lifting equipment.
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It is important that the young person is appropriately medically managed in the latter phase of the disease as respiratory and cardiac issues become evident. Most affected people survive into their twenties, a small minority survive only to their late teens and another small number to more than thirty.
View other websites providing information about muscular dystrophy
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Rett syndrome
Rett Syndrome is very rare syndrome that affects the grey matter of the brain. The syndrome is not progressive as once thought, and mainly affects girls. The condition occurs in about one in 15,000 girls aged 5 to 18 years in Australia, with about 10% of these being in South Australia.
Girls with this condition progress fairly normally for most of the first year of life, after which development stops and gradually starts to go backwards. Learning is seriously affected and the girls have involuntary movements of their arms and hands. Most eventually rely totally on others for all their care.
View the PowerPoint presentation 
Rett Syndrome: Diagnosis, Management and Treatment
Disclaimer: General information only - you should consult with the relevant professional before applying it to a particular situation. See disclaimer details.
View other websites providing information about Rett syndrome
Spina bifida
Spina bifida is the term used to describe a group of congenital conditions in which there is abnormal development of part of the spinal cord. The most common and serious form is myelomeningocele in which the abnormal spinal cord is exposed on the surface of the back when the baby is born. The incidence of spina bifida in South Australia is about 1 per 1000 births.
The major effects of spina bifida are:
Paralysis of the legs
There may be complete paraplegia, or partial or minor paralysis depending on the level of the spinal injury. Children with complete paralysis use wheelchairs for getting around. Those with part paraplegia may walk with orthoses, splints or crutches. A few are able to walk by themselves without equipment. Orthopaedic surgery on feet and legs may assist some children.
Anaesthesia
There is loss of feeling in the legs that depends on the level of paralysis. This may lead to problems with pressure ulcers and burns, followed by infection.
Hydrocephalus
About 80% - 90% of children with myelomeningocele have hydrocephalus, which is a build up of fluid in the brain. Most children will require a shunt operation to control the hydrocephalus. The shunt may need to be revised as the child grows or if it becomes blocked.
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Bladder and bowel paralysis
Nearly all children with spina bifida have problems with bladder and bowel control. Bladder paralysis may lead to repeated urinary infections and kidney damage. Bladder paralysis is managed by regular catheterisation every few hours during the day. Parents are taught how to do this, and the child will learn to self-catheterise when they are about six to eight years old. Bowel incontinence is managed in various ways such as by careful attention to diet, medicines that soften the faeces, enemas or suppositories.
Bone and joint deformities and spinal curvature
These are common and may require splints or surgery.
Educational problems
Most children with spina bifida have learning difficulties. They often have problems with self-organisation, and poor motivation and may need special educational help.
Children with spina bifida and their parents face many challenges. However, with the support of a coordinated team including doctors, nurses, therapists and teachers, these can be met successfully. Physiotherapists have a large involvement in helping such children with how they move about, occupational therapists assist them to learn how to manage activities of daily living and psychologists are essential in helping the child to learn as well as they can.
View other websites providing information about spina bifida
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For further information about disabilities
Reading
Novita Toy and Resource Centre has an extensive collection of reading material covering all aspects of disabilities. Send an on-line message to the Centre
Videos
The following videos can be found in the Novita Toy & Resource Centre. If you are registered with the Centre, you can borrow them by completing the on-line request form.
- Acquired Brain Injury
- Retts Syndrome
- Cerebral Palsy - A positive future
- Muscular Dystrophy
- SMA (Spinal Muscular Atrophy)
- Spina Bifida
- A variety of other videos on other topics concerning various disabilities
Websites
View links to other websites that provide information about disabilities.
Disclaimer Detail: The information on this website is of a general nature only and does not constitute advice. Novita Children's Services makes no representations as to the accuracy, usefulness, suitability or application of the information to a child's particular circumstances. You should seek professional advice before acting or relying on the information. In using this site, you are agreeing to the Terms and Conditions of Use for the site.