In 2017–18 there were 60,400 children and young people living with disability in South Australia. This is 16.7% of the population of children and young people in South Australia and compares to 13.1% of children nationally who live with disability1.
Children with disabilities were described in a recent report by the South Australian Commissioner for Children and Young People as “one of the most marginalised groups of citizens in South Australia”2. Her conversations with children and young people noted themes of identity, inclusion and independence as being consistently raised by these children and young people when considering what was key to the quality of their lives.
For families, parenting a child with a disability can present a unique and complex set of challenges ranging from issues to do with employment, family finances, parental mental and physical health, relationships in the family, loss of social opportunity, and time pressures3. Carers cite a greater need for advocacy, significant financial strain, emotional and relationship stresses, exhaustion and fatigue.
The Child Death and Serious Injury Review Committee has been reporting on the causes of death of children and young people with disability since 2012 when it published a Special Report on the deaths of these children between 2005 and 20124.
Prior to the publication of the Special Report, the Committee reviewed the national and international literature about disability to form a framework for identifying disability.
The definition used to determine inclusion on the register as the death of a child with disability was:
- The child was over one year of age at the time of death
- The child’s daily activities were limited due to their disability, illness, disease or health problem; and
- The child’s daily activities were adversely affected for a period of six months or more.
If a child had a chronic health condition (eg. asthma, epilepsy, diabetes) these were only included on the Register if other disabilities were present (eg. autism, global developmental delay, physical disability).
Children under 1 year of age
There is a unique set of challenges associated with identifying disability in infants. The criteria used to identify deaths for the register are:
- Deaths are excluded if the underlying cause of death is prematurity alone; prematurity and maternal factors; infection; haemorrhage; digestive and respiratory problems; cancer; heart disease including myocarditis and cardiomyopathy; or congenital malformations of major organs such as heart, kidney and liver.
Estimates of the number of children with disability vary across data sources due to differences in definitions of disability and age groupings for reporting purposes.
There are five important reasons for reporting on the deaths of children and young people with disability in South Australia:
- To generate a demographic snapshot of the deaths of children and young people with disability
- To identify systemic issues relating to the care and management of children and young people with disability
- To develop an increased understanding about how the care and management of these children and young people may impact service systems
- To inform service systems in order to decrease the incidence of avoidable harms to this vulnerable group of children and young people
- To identify future areas of focus for the Committee.
Figure 1 shows that, with some exceptions, deaths of children and young people with disability account for between 20-30% of the total number of deaths each year. This is a significant proportion of deaths and is higher than the percentage of children and young people in South Australia who live with disability. The number of deaths fluctuates over the years but shows no significant long-term increase or decrease.
Figure 2 (use the dropdown above to select figures) shows that the majority of deaths associated with disability occur in the first 28 days of life from conditions associated with congenital malformations, deformation and chromosomal abnormalities (ICD-10 Chapter 17). Commonly known as birth defects, or conditions children are born with, these include Down Syndrome and neural tube defects such as spina bifida and anencephaly.
Compared to younger children, 15- to 17-year-olds are more likely to have died from external causes including suicide, drowning and transport crashes, but over half of these young people are dying from conditions associated with their disabilities, predominantly diseases of the nervous system including epilepsy and cerebral palsy.
A review is being prepared that considers the deaths of children and young people with autism spectrum disorder and attention deficit disorders – in particular, the suicide deaths of young people with these disorders.
Figure 3 confirms that the deaths of children and young people with disabilities are largely associated with conditions associated with birth defects, especially when they are under one year of age. Diseases of the nervous system – predominantly epilepsy and cerebral palsy – are also more common causes of death for these children and young people.
Figure 4 presents challenging information for service providers. In terms of the number of deaths, it shows that most children and young people with disabilities who have died5 resided in metropolitan areas of Adelaide and a very small number of children resided in remote and very remote areas of the state. However, when balanced against the population of children in those areas, the highest rate of death occurs in very remote areas of the state. Higher death rates, rather than counts, indicate that children and young people with disabilities who live in remote areas are three times more likely to die than those who live in metropolitan areas.
The Committee has noted in previous reviews how important it is for children and young people with disabilities to be able to access the care they need including health, allied health, and family supports. Access to these services is a key factor influencing the quality and length of life for these children.
1 How are they faring? South Australia’s 2020 Report Card for children and young people (p9). Child Development Council.
2 From Checkbox to Commitment. South Australian Commissioner for Children and Young People.
3 Whiting M. Children with disability and complex health needs: the impact on family life. Nurs Child Young People. 2014 Apr;26(3):26-30.
4 Annual Report 2012–13. Child Death and Serious Injury Review Committee.
5 Figures include deaths of children and young people with one or more disabilities occurring in South Australia between 2005 and 2020 (inclusive).